TYny Ty - NICU Blog Intro

The following blog entries were written from January 17th 2004 through April 7th 2004. They were previously located on other web pages but I moved them into a blog in 2006 for easier reference (which is why there are no comments on these entries - feel free to write some though :) ).

Briefly, Jim and I, after miscarrying a total of 10 children post Tanner, decided to pursue the “easier” route of domestic adoption LOL! We met Ty’s precious birthfamily in Dec of 2003 and they chose us to be Ty’s mommy and daddy on Christmas Eve. We were expecting Ty’s arrival on or around May 1st, 2004. When he arrived three weeks later on January 17th, I set about to prepare myself to lose my 11 th child.

God had other plans though as you will see in these entries. Ty LIVED and thrived! Though he was born at a mere 25 weeks and 2 days, he has survived the trauma of his early birth miraculously! Hoping these entries will encourage the hearts of other micro preemie mom’s.

Note: If you notice the letter “J” awkwardly positioned in these blogs - it represents a smiley face like this > :) . I may not have caught them all in my editing :) . The entries only cover the first 81 days of Ty’s life. For current information on Ty, see my blog - Mama’s Diaries.

Jan 17th, 2004 - Ty is BORN!

The initial email sent to friends and family on Ty’s day of birth.

Friends and Families,

I am so dead tired I hardly have any energy to write to you this morning (3:40 am) but I need your prayer support desperately. At 5:08 this evening, our new little son Ty Jordan was born. Amanda (birthmother) went into pre-term labor and by the time she got to the hospital was already fully dilated and Ty’s foot was on it’s way out. They had to do an emergency c-section.

Ty weighed in at 2 pounds. We thought he was 24.5 weeks but the Dr. seems to think he is at 25.2 weeks. At this stage every day counts. The Drs have been so precious with us. They believe him to be a fighter and are telling us that he is doing very well at this early stage. They are giving him a 60 to 75% chance of survival. His first 72 hours though are critical. At this stage, hemorraging is possible and could very potentially be fatal.

Jim and I were with him until 3:00 am this morning. He was already gripping mommy’s fingers. He is soooo tiny. We laid Jim’s wedding ring beside his wrist and no doubt his wrist would fit inside. Yes I have pictures but I must get some sleep so I will be posting them in the next couple of days. I will send out a more detailed note later but needed to let everyone know right away so that you could be praying.

I don’t know much tonight but I do know God is good. We want Him to get glory out of this irregardless of the outcome. Please pray that God will give us courage. With all the loss we have already faced…..I am just overwhelmed with this. Mommy’s heart has already bonded and there is no going back.

Love Doni

Jan 18th, 2004 - Day 1

Well, the best we can figure, our little Ty Jordan was determined to not be upstaged by his big “brudder”. If Tanner was a miracle baby then by golly he was going to be too! I am operating off very little sleep as I write this (1/18/04) so won’t give many details yet. I am about to get ready and go to the hospital to be with him again - Jim and I are only home a couple of hours to sleep a little bit.

So far Ty is doing well but he is not even 24 hours old yet. The Drs have given him a 60%-75% chance for survival. They say he shows all the signs of a survivor so far. I am just taking a second to write this so I could post his pictures real quick as I know many people are waiting. He won’t be coming home with us for at least 10 to 12 weeks and even then will be very limited to what he is exposed to.

When you see his pictures, you will notice some swelling above his eyes. This is because he is wearing blindfolds:) most of the time as he is under a heat lamp and his eyes must stay protected. He can’t regulate his body temperature yet and gets very very cold easy. His little skin is so thin.

I cried and cried yesterday but when I finally saw him I had a real sense of hope. He is teeny teeny yet he looks strong. He looks like another miracle personified. He is a beautiful little guy - mommy loves his nose right now especially! This tiny little baby holding on to mamma’s fingers. I almost felt like he was the one offering his little hope and comfort to me.

UPDATE
January 18th, 2004 11:30 PM: We just got home from the hospital and Ty is now over 24 hours old! We have past our first critical milestone. Several family members have got to see him and I even held him for a second today while his nurse was rearranging his “nest”. Most of the day he was doing great but he did start to “desat”? (am I saying this right? - it is when his vitals start diving because his oxygen in his blood starts going down) at about 3:00 PM. They had not given him his second dose of steroid yet and he decided he needed it - now! Mommy panicked and started crying while nurses hovered over him (and me:) but he pulled out of it just fine. By this evening when daddy and mommy told him night night he was resting peacefully and looked great. I have so many more details to share but in order to be there for him during this critical time, I don’t have the time to post much because I have to get some much needed sleep. I will try and update this at night for those of you who are being so faithful to pray for him (and us:)! Words can’t express our appreciation for that. And….Amanda (birthmom) is doing well too. She is in another hospital as Ty had to be air evaced to another NICU. C-sections are no fun but she is a trooper. We got to see her today too and she still had that sparkle that has endeared her to us - even after the 48 hours she has had. Please remember to pray for her as well. Love to all.
(P.S. For those of you a mite curious:), Amanda did give me permission to post her name on his page:)!

Jan 19th, 2004 - Day 2

12:30 AM

The honeymoon period is ending. (Dr’s warned us that he may do good at first - thus honeymoon, but then start struggling a bit). Ty had a harder day and Daddy, and Mommy are worn out. He “crashed” twice today. Once around 5:00 PM and then again around 10:30 PM. His stats just started diving. The first time was due to his intubation tube being in the wrong spot and the second time, he needed to be suctioned and was very uncomfortable. He was having a really fragile day so any upset or excitement required longer recovery time. By the time we left at 11:00 PM he was stabilized and sleeping but the ventilator was doing all the breathing for him. The nurse said not to worry about that because sometimes they just need a bit of a rest. He was given a little morphine to relax him. I can’t tell you how terrible it is to watch him trying to cry with that tube down his throat. No sound comes out but it is obvious that he is crying. Please pray that he has a good night and better day tomorrow. We have been warned that this will be a roller coaster. He wasn’t supposed to be outside the womb, his little body was not ready for this so we just have to pray and love him through each day.

Jan 20th, 2004 - Day 3

8:00 AM

I am getting ready to leave for the hospital but am hoping for prayer for the latest. If you see this note, feel free to copy and send it out as a prayer request as I will not have time. This morning at 12:30, right after I finished the last update, I called the hospital and Ty was crashing again. The Dr. suspects that he has an open duct in his lung. This is treatable with medication. However, it is also possible that he is bleeding internally (brain) which could be fatal. They did a head ultrasound at about 7:00 AM to check for bleeding and will be doing another test (echiocardigram) to check on the duct issue. PLEASE PRAY IT IS THE DUCT. I am an emotional mess and kept calling the hospital through the night so am just not getting much sleep which isn’t helping. I know there are a few of you following this who have lived this nightmare and you know exactly where I am at. I have appreciated your words of comfort and encouragement more than you. At this moment, Ty is resting nicely and has been for a few hours. He has been sedated so he can rest better after the constant trauma of last night. If you are family hearing this for the first time, I know it is hard to read these updates and not hear my voice. I am sorry for that but this method of communication is just the best I can do right now.

11:30 PM

We are home a little earlier tonight as we need sleep so I am going to take the time for a more detailed update - this may get long so be forewarned!

Ty’s Day - Technical Info:)
Overall it was a good day:). Some of this may be a little technical but as there are several families reading this update that have experience with micro preemies, I decided to list some more technical info. While I am beginning to learn this stuff you’ll have to bare with my spelling and sometimes misunderstandings. It takes awhile to get this but I am trying. I must be doing a pretty good job because Ty’s Dr. started quizzing me today and I gave him a list of facts and questions and before he answered he wanted to know if I was a Dr. or nurse! Hee hee! This brought a big smile to my face. I told him I was reading books and driving his staff nuts asking questions:) He said my knowledge was surprising! Being a little OCD (obsessive compulsive), my family is not at all surprised and I have watched twinkly grins on Jim’s face all day as he listened to me interrogate the nurses. I was getting the “Yes Doni - I am on that right now” line from nurses I was following around:). All in good humor though because I appreciate them more than I can say. They are incredible and I appreciate their patience with me hounding them.

Body Temp - Good today
Weight - 1 pd 14 oz (weight loss on target)
Blood Pressure - We had some trouble. 19 (average mean) was the lowest but was put on Dopamine and that corrected it in a hurry. They want to see him at about 25 to 30 right now due to his tiny size.
Billyruben - about 5.5 - not bad
Respiration - Up to 40 bpm - not bad considering
Oxygen - hung out in 90s - good
Ventilation - Ventilator was on 21% most of the time which is great but intensity was at 22 (that’s the “umph” power. We are shooting to get him down to 18 on intensity).
Blood Gas - Up and down but mostly good
Glucose - coming down 140s finally
Sedation - He didn’t do well with the morphine so today he was on phenylbarbitol mostly and that helped. He was really out today and not moving much but he needed that after yesterday.

Overall, today was very good considering. I was very frightened this morning because I wasn’t extremely pleased with his initial test results. There are two issues at play right now.

First, Ty is experiencing some bleeding in his brain. On a scale of 1 to 4, 1 being best, he is rating a 1 on one side of his brain and a 2 on the other. This is not too serious at this point and not likely to create a long term issue (his development will be watched because of it though). The scary thing is that if this bleeding progresses to a level 3 or 4 he could be in very serious trouble including discussions of removing life support. This sent me for a loop!!!! I felt better this afternoon though when I talked to his Dr. because the Dr. said that this level of bleed is very common for 25 weekers and that it USUALLY does not progress. He said 25 weekers do not escape crisis during their NICU stay. They are NOT supposed to be here so there will be crisis points often. For now though, the Dr is still working toward the goal of Ty going home in 10 to 12 weeks and based on where he is TODAY (which admittedly could change at any moment) he is still on target. (I am still very very concerned about this issue though).

Second, Ty has PDA - Pulminary Duct Arteriosis (I was confused in this morning’s update). The echocardiogram showed that his pulminary duct (right above the heart) is open. This is not a big surprise for a 25 weeker. This causes respiratory issues and could ultimately cause congestive heart failure. They are treating him with meds right now in hopes that the meds will cause constrictions that will help close this duct. He will be treated every 12 hours for 3 days. After that, if the duct is still open they will do another med series. If that is still unsuccessful, he may have to have surgery. The Dr. assured me that while any procedure is risky for his age, this is an “easy” surgery and these babies usually tolerate it pretty well. One known risk of the meds he is on though is a catastrophic bleed. This is rare (thank God). I am trying to give you real detailed info so you will know specifically how to pray for him.

While neither of these issues were things I wanted to hear, I am at least glad to know that many 25 weekers have survived both of these issues. I was also extremely relieved today to get an email from a new friend that her 25 weeker had a level 3 bleed and is a healthy happy 5 year old today - praise the Lord! That was just the encouragement we needed.

QUESTIONS FOR YOU
For those of you who have walked this road or have NICU experience, anything you can tell me on brain bleed and PDA will be VERY appreciated! Please send an email.

ABOUT OUR ADOPTION
Isn’t it funny that in most scenarios our biggest emotional concern right now would have been the adoption itself? This has taken the backseat in light of everything else. Jim and I were laughing today realizing that our very biggest adoption advocates have been our birthfamily. We are still working towards getting this done and we are now officially Ty’s foster parents while waiting on all paperwork “stuff” to get done. Amanda is doing great and got to see Ty today. She has been in another hospital all this time.

We knew the Lord put our families together but never dreamed we would all experience this kind of trial by fire! As hard as this has been on all of us (Ty’s early birth), it has been a true blessing where our bonding is concerned. We have sincerely fallen in love with this family - all of them. Cheri (birth grandma:) and I touch base several times a day and have become support partners for each other as we go through this. We are both convinced that even though the nature of this situation has created an even tighter bond, we would have loved each other had we met under different circumstances too.

We are all on the same page with wanting what is best for Ty and are working hard to achieve this adoption plan. We all felt the Lord leading us to open adoption from the very beginning but we are now seeing just a glimmer of how important it has become especially during this time. In the beginning we were adopting a baby boy, now we have adopted into our hearts this whole family and they have adopted us. I could spend hours writing on how incredible this has been.

HOW WE ARE FEELING ABOUT THIS ADOPTION?
This is a question that is coming up often due to Ty’s special needs. I know it is a realistic question and one that many are wanting to ask but are a little afraid too:). I will attempt to put our heart in words on this subject.

A couple of months ago we had a high risk adoption opportunity present itself. A young birthmom who had severely abused drugs and alcohol during her first trimester (not Amanda) wanted to meet us. Wow! We didn’t know what to do. Jim and I did not feel especially “called” to a high risk adoption or a special needs child. We are just a daddy and mommy wanting to build a family. We have the same dreams of everyone else. Healthy happy children. HOWEVER, we needed to know what GOD wanted for us. We prayed and prayed and finally decided that in order to proceed with a high risk adoption we needed to have two things (1) peace from the Lord (2) we asked the Lord to intervene however He needed to stop the adoption unless it was HIS perfect choice. It was never a question of whether or not we would love a baby who had some problems, but if we did end up in that scenario we wanted to KNOW that God CHOSE that baby for us and Jim and I and Tanner for the baby. No sooner had we reached this conclusion that the birthmom decided she wasn’t ready to meet. God intervened just as we had asked.

This brings us to Ty. Applying the criteria above to Ty we have total peace that God chose this for us and Him. We are not questioning for one second that we are outside His plan. Everything that has happened to date has assured us that this is just where God wants us. The fact that Ty was born a micro preemie has actually confirmed to me that God chose this. Why? Because God has made it very obvious that He is going to choose the high and hard road for us in building our family. It seems that no matter what we do or what road we take there is loss or tragedy involved. Nothing we do - no decision we have made has allowed us to escape this. I have finally progressed to the point of saying “Ok Lord. You are good. Your purposes in this are good even when they hurt. I am accept that You are continuing to allow these hardships - You have consistently chosen this for us (7 years of infertility, 10 children miscarried, 3 failed adoptions/losses, and now a micro preemie) . You are making a point in our lives. This is not an accident - it is very evidently on purpose. Therefore we have to circle back to God is good and all this is about bringing Him glory. I don’t know how this story ends but I know that today Jim and I are Ty’s parents and God chose this. I know that we are hopelessly in love with him. I know that at some point real soon this question is going to be hurtful to us because this is our baby boy and we are committed to him. Adoption does not limit love. Ty “got us at hello” and we are in this for the long haul with him. He will have our commitment and love for the rest of his life. (*This may seem “strange” that we are saying this before the official placement, but everything I have just written has been discussed with Cheri and Amanda too so we are all on this same page with this. This is their desire for Ty as well and I talked to them about writing this.).

HOW WE FEEL ABOUT GOD RIGHT NOW?
I am getting emails pouring in saying “I can’t believe the Lord allowed something like this to them after all they have already suffered”!!! Well guys I can believe it. I say that with a smile. As I said before, God has allowed everything about our journey to building our family to be filled with crisis for 9 years now. This no longer surprises me. It is not spiritually hurting me either. The years and trials are teaching me that I am incredibly loved by the Daddy of the whole wide universe and beyond. No matter what my little finite mind thinks or sometimes feels, HE…….IS…….GOOD….and He is God. He loved the babies He took home but for reasons we’ll likely never understand, He took them for His good purpose and His ultimate glory. He loves Ty more than any of us can ever dream. The decisions He makes for Ty, irregardless of what they are…will be for good and perfect purpose. I absolutely know that and this one point alone is helping me to have peace. I am not struggling with anger because of this. Don’t get me wrong though, this tender mama is still going to grieve her heart out every time our little Ty even grimaces. This is more agonizing than anything I have been through to date and that says a lot as you well know. I woke up throwing up this morning in fact because my mommy heart was pushed beyond the limits of stress worrying about my baby. While I know it is in the Lord’s hand, I am still going to hurt for my little boy. When he has a bad day, I am going to have a bad day. I do NOT look forward to the roller coaster of the next days, weeks and months. Every day I will be afraid. Some days more than others. God created me to be a mommy crazy in love with her children. He understands my fear and need to grieve and hurt along with my baby. Goes back to the C.S. Lewis quote “We are not necessarily doubting that God will do the best for us. We are wondering how painful the best will turn out to be.” Every day I wonder how painful the day will be. First for Ty, then for us.

HOW YOU CAN PRAY
I tried to give very specific detail today so that you would know exactly where we are. We are hoping Ty’s bleeding will not advance any further. He is at crucial risk until he is 14 days old and after that the risk will be not be as high. We also hope the meds he is on will close the duct and he will not have more problems with this. He has no immunity right now so we are also hoping he can mange to escape any infections as this will really set him back and could be another serious risk.

In relaying Ty’s needs to you though, I am not asking you to make “demands” of God. He is God and we are not. We need to trust God’s decision for Ty. We, of course are hoping that God’s will for Ty will include a healthy little boy coming home with us in a matter of months. We will ask Him for this. We will not demand it though and we will submit to His ultimate plan for Ty. His love for Ty is bigger than ours and Ty is safe in the Father’s hands. We believe that God loves for us to bond together and lift our prayers to Him. We believe that He calls us to do this so we can take intimate part in watching His plan unfold. We hope that God’s choice is the miraculous choice of complete health and healing for our little one - if it isn’t though, we hope that our hearts and lives will be changed because of what God does as a result of Ty’s life. So this is how we would ask you to pray.

I know this got long tonight. If your still hanging in there with me reading this still - thank you for caring so much and loving us and praying for us and Ty.

THANK YOU’S

* For all your prayers!
* For all of you that have put us on prayer chains across the country (and there are many)!
* For your loving emails
* For checking this page to keep updated so that you know how to pray for him. (I had 500 hits on this page yesterday alone!)
* For your stories of hope meant to encourage. It helps so much. I am reading email each evening and have so many people that I want to personally respond to.
* To my sisters in love, Brooke and Jodi, who cleaned our house, cleaned our bathrooms, folded our clothes, cleaned the dishes still on the table from Saturday’s dinner:), and even turning down our beds and laying our pajamas out. I haven’t even had the chance to talk to you much less say THANK YOU. I love you and we got a GREAT big smile to see this.
* I was told tonight that Brooke initiated a time of prayer at 7:00 PM tonight and that the news spread like wild fire. For the record, it was right about this time that Ty’s blood pressure was brought back under control. To all of you that took the time to pray for us tonight - we are so grateful.
* For the beanie babies for Ty! Alma you crazy gal - getting 5!!!! I am writing down who gave what so Ty will know someday. They are going to go in a basket by his bed so that as he progresses they can be used in his isolette to comfort him when we are not there. The nurses say beanie babies are the best for this - and they just so happen to have a “Ty” tag on them:) How ironic is that? Hee hee!

Time for bed for me. Would you believe it is after 11:00 and Tanner is still watching a movie in our room with Jim? Daddy couldn’t stand to put him to bed tonight after not seeing him much the last few days. Jim has such a tender heart:). He has already threatened to snuggle Ty under his shirt and make a run for the door because Daddy just wants to hold him:) Don’t worry grandma’s - he knows better:)

Oh and one more thing…just a little funny that is only humorous in light of everything else….today Jim and I are in the NICU and all of the sudden the fire alarm goes off. All the nurses walk out and shut the door behind them leaving one nurse alone with us and the babies in our pod (about 5). Jim and I just looked at each other like “Go Figure!!!” We quickly asked “Well now what?” We were told the doors were fire doors and that in the case of a “real” emergency we would have to wait to be rescued as the babies can’t be moved. It’s amazing how many things CAN go wrong in a day. Thankfully, it was a false alarm. Thanking the Lord for all the things that He does prevent!

Love Doni

Jan 21st, 2004 - Day 4

9:38 PM

Ty’s Day

Today was again a good day. I got a little stressed when I got to the hospital this morning because there were several people around him. It turns out that his tube (he’s intubated) was extending only to his throat and not to his lungs. This was very surprising to all because he had been doing quite good even with his tube in the wrong spot. They reintubated (which I hate because it can’t feel good and it scratches his throat) and then he started to have a little dip (desat to about 70). They hand bagged him (oxygen pressed manually by hand into his lungs) and that brought him right back up.

He was very very still again today and hadn’t been sedated in awhile. He didn’t even twitch a toe. No one but me (and Grandma CheriJ)was worried about this so I guess that is ok. I was told that he was just needing a real good rest.

At 2:00 PM, he was given more meds, changed diaper, suctioned, etc and he dipped a little after this too but was brought back up by adjusting his vent. Our little guy is NOT liking people messin with him right now. The nurses are being very cautious about this and are trying to stay very hands off until he is ready. I only got to touch him once today. I laid my hand on his tiny chest and felt a rattling. I told them something felt wrong so they suctioned him and then he was fine. (See! I am learningJ!)

I just called to check on him and he is still stable. We (Jim and I ) wanted to see him again tonight but Tanner would have none of it. He has been slighted for 5 days and is crabbier than he has been in a very long time. He kept saying his “Pizza wouldn’t work!” I have no idea what he was talking about but I guess we all are a little irrational when we are tired, emotional, and just plain grumpy! It is so hard trying to figure out how to divide our time when we have a 2 hour round trip drive to the hospital.

Tech Info

Blood Pressure: 25 – 35

Oxygen – 90’s (except for the 2 little desats that were quick)

Resp – 35

Ventilator: 21% most of day, 19 intensity, 35 bpm, and 5 peep.

He started breathing above the vent at around 2:00 so that was good.

Blood Gases were good today

Glucose – good

He was a little vinegary (acidic) so they gave him some medicine for that

Tests

He will have his last dose of med for his PDA tomorrow and his 2nd echocardiogram tomorrow. Hopefully this will show some improvement (closing of the duct). His head ultrasound (10 day) is scheduled for the 27th so please keep praying for this (stay at 1 or 2 or better yet, 0- might as well dream big because God is able!).

Overall Appearance

I didn’t think he looked so good today. His coloring isn’t bad but he just has a haggard look to him. His skin is looking a little dry to me (and yes the humidifier is at 50%) and his skin is just hanging off the bones – literally. Today the nurse turned him and I could see the white of his ribs through his skin. When they removed his sunglasses for a minute, his little face looked so sad and drawn. Mostly because the tubes are pulling his nose and mouth down so it makes him look as though he has no facial muscle control. When you are this tiny, it doesn’t take much. I am sure this is a normal stage but it just hurts my heart. He is back up to 2 lbs today but looks even smaller. I think when he was first born his skin must have been more hydrated and now he just looks soooo frail.

I am incredibly grateful that we have had it pretty quite for closing in on 48 hours now.

Gift from God Today

As I was sitting beside Ty’s isolette today I had my bible open to Hebrews. Jim and I have been reading this together and emailing our notes to each other (well we were……) Anyhow, my mind was so preoccupied I was having trouble concentrating so I decided to switch over to the Psalms. I normally am not big on the “close your eyes and pick a page” method but today that’s what won out. As I began reading the first chapter on the page (Psalm 113), I noticed that I had written a date in the margin – 5/1999 – a year before I got pregnant with Tanner. When I got to verse 9 I knew why I had marked the chapter. Psalm 113:9 He makes the barren woman abide in the house {As} a joyful mother of children. Praise the LORD! “

What an encouragement that was to my heart! Today I am indeed a joyful mother of children. I loved it that the verse first stood out to me 5 years ago and now it jumps off the page again as I was sitting beside my new son’s little bedside.

Thank You’s

· My sister in love Jodi is loaning me her second cell phone for my long trips and I REALLY appreciate it. *This probably seems stupid that I am thanking her via a web update but she, like me, is also a bit OCD and watches Ty’s page throughout the day even KNOWING that I am at the hospital and can’t possibly be posting anything new so she will probably read this before I could call herJ!!! I haven’t had time to even call family much (another reason for these long detailed updates – get everybody in one shotJ.

· Brooke – another sister in love, organized friends to make some freezer dinners for us so that we wouldn’t have to make dinner and grocery decisions when we are running low on time. Thanks for thinking of that – that will be really nice.

· I have been told today that people are praying from so many different states, Hawaii, Panama, Brazil, and even Sweden and those are just the countries I have been told about! Wow! This site was hit over 600 times yesterday so I know that so many people are following Ty’s progress. Jim and I are just overwhelmed with your loving care and response. Each time I read my email I cry. I wish I could forward so many of the emails I am getting to all of you because they have helped my heart so much. Today my cousin (DennetteJ) told me that she was telling her boss all about Ty. I am going to go ahead and share her email with you (see Dennette – I am reading your email!!!)

“This morning after reading the update about Ty (here at work) I went to fill my boss in and to ask her to keep him and you guys in their prayers. I told her the whole story and she agreed to pray for him daily. As I was leaving her office, she said “hey Denette, what is the baby’s name?” I said “Ty Jordan.” And she said “Really??!! I have been praying for him for a few days already…I got an email from a friend, who got an email from a friend, who got an email for a friend asking for prayer for a Ty Jordan.” That made my smile. So many people who you don’t even know and who don’t even know you are praying for Ty.”

Thank you for sharing that Denette! I always wondered how email managed to get as far deep and wide as it does and now I am finding out first hand. I am starting to think that we can’t even begin to realize the amount of prayer support Ty is getting right now.

Micro Preemie Parent Questions

As many of you that have been writing me have “been there done that”, I have a couple of questions for you.

· How in the world do you balance your time? Especially if you have a long drive to the hospital?

· How do you tell your other children what is going on? I am afraid if I make a point to tell Tanner that I am leaving to see Ty in the hospital, he will start getting upset and resentful that I am sharing my time with his brother that he has not yet had the privilege of meeting. (He has been asking while at the hospital for Daddy to put “Bay in hands” – translation – go get my brother and bring him to me and put him in my hands!)

· How much time should I be spending at the hospital? I know this is a tough one. I have trouble tearing myself away from Ty’s side right now yet I realize that my other child needs to see his mommy too. Just wondering how some of you have handled this. I don’t know how to avoid compulsive and obsessive behavior about being at the hospital. I already tried to negotiate with Jim about going by myself back to the hospital as soon as Tanner goes to bed but Jim said “No way your making that drive in the middle of the night!” Jim is frustrated with the stress of balancing too. We both want to be everywhere at once and not short change either child. The 2 hr drive time complicates this.

· If you read something that I have written that you are familiar with in regards to Ty’s medical issues or treatments, please share your experience with us. We are trying to learn all we can and other parents have been a huge blessing to us! If I write something that sounds a little “off”, please correct me. I might misunderstand some things.

Until tomorrow…

Jan 22nd, 2004 - Day 5

11:35 PM

Ty had such a good day I am almost giddy with excitement to share it with you!

Tech Info

Vitals similar to yesterday. Blood Pressure was raising a little bit (49) for a bit but that was because he is on dopamine and was ready for them to take his dose down some! By this evening he was off blood pressure medication completely. He still is desating with handling but that is not surprising. He gained a tenth of an ounce from yesterday and is up to a whopping 2 pounds 1/10 ounce. We’ll take all we can get! His billyruben was down to 2 so they took him off the billy lights! Yeah – no more sunglasses! Mama can see his beautiful face now!! His coloring looked much better than yesterday. In fact, he looked like a different kid. I don’t know why he looked so sickly to me yesterday but today he looked much much better.

Test Update – Awesome News!!!!

He had his echocardiogram this morning and the pulminary duct is almost closed!!!!! It went from very large a couple of days ago to barely visable. Thank you for your prayers! No surgery required and no more meds for this! Yippee!!!

General

I got to change his diaper today! Do you even know how fun that was? I was very careful and a little nervous as he is so incredibly fragile but it was my first opportunity as his mom to “do” something for him. I also get to start doing his laundry so that his little isolette will “smell” like home instead of the hospital. I am so excited to be able to participate in his care. I also got to touch him more today and of course I love that. Today he got to have his teddy bear too! Daddy named Tanner’s first bear “Carl” (I have no idea why) so Mommy decided to name Ty’s first cuddle bear. His name is “Charlie”J. Daddy thought “Charlie” was a dumb name for his bear and thought we should use “Dexter”. I vetoed that. Charlie is only a little tiny beanie baby. I added a picture of him cuddling his bear to his slideshow so be sure to check it out. When you see the picture, you may think Ty looks big. Keep in mind though, the bear he is holding is a tiny beanie BABY and it takes up most of his body. I’ll try to take a picture of Charlie next to a regular size Beanie Bear and post it tomorrow so that you can get a better feel for perspective. The pictures don’t come close to doing justice to his teeny size. A preemie outfit would be impossibly big for him at the moment. Picture putting Ty in a shoebox and that may help a bit. Beanie babies work great for micro preemies because they can be used for propping stuff and helping him feel cuddled when we aren’t there. We already have 7 in a basket by his bed.

Amanda

Please be praying for Amanda. Not only did she have to go through the stress of preterm labor and a c-section, but now is getting a blood patch as she is having terrible migraines from the spinal block! After the blood patch her headache disappeared but now her back is hurting. As if all this wasn’t hard enough…..

Thank You’s

To the sister of my heart, Heidi Jo Warnick for coordinating more prayer partners and helping communicate to everybody. If I send you Ty’s footprints will you make me some booties? Please please please???? It won’t take you long as their soooo tinyJJJ!
To the sweet Pastor who found out about Ty from a friend and posted Ty’s pictures inside of the church for his congregation to see and pray. I am amazed at the support, love, and prayers from people we have never been blessed to know…yet.
To Vicki Williams who must have contacted every church in the valleyJ!
To my sweet friend Sarah Rosenbarker who already finished making a blanket for Ty and for offering more preemie clothes (she had preemie twins).
To Aunt Becky who is handling my Junior High and High School Sunday Class for me when I can’t be there to teach. I am going to miss my class but I know they will be praying too.
Grandma Longo for bringing encouraging info from the March of Dimes to us and for “volunteering” to make some preemie clothes. (It’s in writing nowJ). Grandma has to go back to Chicago in April so we are going to keep her busy in the meantime. She is currently working on Ty’s John Deere Tractor curtains and will soon be painting his room. I WAS going to help. She might be on her own for awhile nowJ.
To Barbara Mack from the March of Dimes for Ty’s sweet presents today and more info on preemies.
To Brooke Zimmermann, my sister in love, for once again doing chores in my house and leaving a darling bear for her new nephew. Who made the cookies and who made the dinner that is now in my freezer?J I am especially thankful the trash was taken outJ. I got your note at the hospital - when did you leave it? Sorry I missed you.
To Jenni Saake for posting my updates on the Hannah’s Prayer site to encourage prayer support. I am so thankful for that as I don’t have much time now to catch people up in more than one place and we want all the prayer covering we can get.
To both sets of grandparents who are on call for Tanner. I know you love to have him, but thanks for being willing to rearrange your day and nights right now. We love you.
I hope you all can feel the sincerity in my heart when I don’t have the time to thank you directly. Your probably thinking that if I spent less time writing this update I could get back to more people. That is true but I am literally overwhelmed with email right now (I love it though) and spending time in one place is just a better use of time for me. Not to mention the fact that this nightly update has become my personal journal and it is very therapeutic!!!!

Tanner Update

Tonight Tanner was in the hospital lobby with me while Jim was in with Ty. I watched him drag a stool up to the window and climb up. He stood there quietly studying the babies. (No you can’t see Ty from this room if you are wondering). Finally he looked at me and said “Ma - take home!”.

“Which one?” I asked.
“That one!” he said pointing to a tiny girl in the back.

I then explained that when Ty got bigger we would put his car seat in the car right next to his and we would take him home but that it would be a long long time from now so he would have to wait patiently. Mistake. He asked about that car seat from the 3rd floor all the way to the car pulling out of the parking lot. When will I ever learn……

Mama’s Ty Journal

Son,

Today on my way to the hospital I could hardly wait to get there and see you. While driving I listened to a song that filled my heart with thoughts of you. Many would think that this song doesn’t really apply to you and to our situation but mommy thought it did, on many different levels. I think I will always think of you when I hear it. Following are the words and an explanation of what they meant to mommy.

Song: Child of Mine
Artist: Mark Schultz
Album: Stories and Songs

I’ve been hearing voices
Telling me that I could never be what I wanna be

(Ty – I know you don’t hear these voices yet but Mommy and Daddy do. We hear them when the Dr.s and Nurses tell us that because of your premature birth and all the crisis possibilities that can still come, especially if your bleed raises to a 3 or a 4, that you may be deaf, or blind, have cerebral palsy, brain damage…and the list goes on. Guess what son? The only thing you ever have to be is who you were created to be. The Drs. are right. You are imperfect. So is mommy…and daddy…and Tanner. God says we were all born imperfect. Many people don’t think that is true but it is the God of the whole universe and everything in it that said it so I believe it. The only perfect thing in Daddy and Mommy is Christ and that is because we asked him to cover us with His own perfection. We are committed to you and will love you and be your mommy and daddy for the rest of your life. You don’t have to be “perfect” in the eyes of the world because we don’t need a perfect child, we just need you)

They are binding me with lies, haunting me at night
And saying there is nothing to believe

(I am glad that when mommy gets scared, when I lay awake with worry, when I fight the fear with faith and get weary, I am so glad that I KNOW there is someone to believe in. God’s love for you and His choice – you are safe in His hands no matter what comes).

Somewhere in the quietness when I am overcome with loneliness
I hear you call my name
And like a Father you are near
And as I listen I can hear you say

You are a child of mine

(Ty, I hate it that I can’t be with you all night. I know you have loving care but it isn’t mommy. Mommy wants you to know, even in the quiet of the night when we aren’t with you that your are loved – and You are His child)

Born of My own design

(Oh Ty how true that is. I sit and marvel when I look at you. If I ever could have doubted our creator, I would be proven a fool looking at you. Even though our medical science is so advanced, we can’t come close to caring for you the way God designed for you to be cared for in the womb. We are making your body work so hard now just to live. I am sorry we can’t do better son but we will never be able to compete with God’s perfect way of doing things. Know this, I sit in awe of who God is just by holding your tiny hand. It is obvious that you are a creation of His design.)

And you bare the heart of life

(What a beautiful line. Everything about you exudes life Ty. To look at you, the most fragile of all humans yet perfectly formed and designed. Many have said that a “fetus” in the womb is not a baby until it is viable outside the womb. They believe you do not have the right of life unless granted to you by your biological mother. (Thank the Lord for Amanda!) You are on full life support and could not live without an enormous amount of intervention. Maybe your pictures will change hearts and minds. Maybe someday you will help your brother Tanner in lovingly standing up for all the little ones who can’t stand up for themselves – from the tiniest embryos (snowflakes) to the full term babies – all are precious in His sight).

No matter where you go
Oh you will always know
You have been made free in Christ

(May daddy and mommy help you learn how to live a life of freedom – by teaching you about the only one who can save you both now and eternally.)

You are a child of mine

And so I listen as You tell me who I am

(Always listen son – may your security always come from knowing that you are His child. It is what He whispers in your ear about who He wants you to be that will carry you through all your life.)

And who it is I am going to be

(We can’t wait to watch you grow and see who you will be)

And I hang on every word
Knowing I have heard
I am Yours and I am free
But when I am alone at night
That is when I hear the lie
You’ll never be enough

(Your already enough my son)

And though I am giving in to fear
If I listen I can hear
You say – You are a child of Mine

(May you always hear Jesus calling you. May He whisper in your ear even as you sleep and fill your little heart with peace. Good night baby boy).
*If you would like to hear this song, you can purchase it off Napster for .99 cents. They’re back and their legal:)

Jan 23rd, 2004 - Day 6

11:54 PM

Ty’s Day

Another fabulous day! Hurray! I know I shouldn’t get to excited yet as this is a little bit typical to experience good days after the first week and that inevitably the bad days come, but still I want to rejoice on every good day.

I am not going to repeat all the vitals unless their is a significant change. He did have to get transfused today - this is his 3rd time. Micro preemies don’t have a whole lot of blood so having their blood drawn takes more than they can afford to give which contributes to anemia issues. It’s interesting to watch how they do it. They first draw blood “off the top” and set it aside. They won’t use it because it is too saturated with IV fluids and would skew test results. Then they draw just a teeny tiny bit for testing and then give the initial draw right back to them. In the next couple of days he will be advancing to a PIC line too. (Percutaneous Intravenous Catheter for administering meds and fluid).

Ty’s ventilator got backed off even more today and word on the floor is that he may very well be extubated in 2 days!!!! He would still be on oxygen but would not be intubated (tube down his throat). That means I’ll get to hear his little cry! He is breathing above the vent enough with steady vitals that they think he can handle it. I have been warned though that over the course of his stay he will probably have repeat ventilator time. I hope not but am preparing myself.

I thought his blood pressure was getting a little high after handling today but no one seemed to be concerned. He did desat once after being handled but came back up fairly quickly with manual breaths off the vent. (I learned today that hand bagging is very bad on their lungs so I was glad tonight’s nurse tried hard to avoid this).

Yesterday, I made a mistake on his weight. I got confused. He was 2 pounds 2 oz but today he is back at 2 pounds even (birth weight) again. I know where the other 2 oz went too - I changed those diapers:). He actually looks even smaller now that his swelling from birth has gone down. Amanda did such a wonderful job taking care of him on her shift:), now he is messing it all up!:):)

I had such a fun day with him. I changed diapers and held him while they weighed and changed his blankets. He actually had one diaper so wet it leaked through his blanky. I had to take it home to launder it! Yeah for me! I get to “do” something for him!!! His Grammy Sweetie (my mom) and I went shopping this morning before I went to see him and we bought him more blankets (no not because I don’t want to do more laundry - but your right - I don’t!). I am a blanket fanatic and love the micro fiber fleece and anything super soft. We also looked for preemie clothes and I agree with my MIL, what a waste of time. First of all, they are ridiculously expensive and second of all, they would swallow him up. He is no where near being able to fit into a preemie outfit - wwwaaaayyyy too big for him. I did buy him a couple preemie beanie hats just to see but when I held them up to his head I had to laugh. Not going to work anytime soon. So mom, guess you better get busy sewing (hee hee!).

I also got to give him a little bath (kinda:) today. I was gently pointing out some things that just “didn’t look right” to me and so the nurse basically said “so wash him then”:). I gladly complied. I got very very psyched when I was 10 seconds away from giving him his first feeding. He was going to get a huge whopping 2 ccs;) of preemie formula and the nurse was going to let me administer it down his tube. She suctioned his stomach first (this had not been done yet) and the absolute ickiest looking black stuff came up. I asked for an explanation and never really got a definitive answer. I think it was probably meconium that he swallowed in utero - yuck!!!! Anyhow, his feeding got put off because of this as they wanted to make sure it was all out before feeding him. Maybe tomorrow……

I laundered all his blankets and brought them in to him tonight. What a difference it made to snuggle him down for the night with his puppy behind his back, his caterpillar supporting his knees, and his blue puppy blanket covering him. (And yes, the nurse probably took it right back off when I left but she was gracious enough to humor me!:) I am trying to make his little isolette more cozy. I am going to be taping Daddy and I and Tanner talking and reading stories as well as soft music for him. I can put my mini recorder right in his isolette and the nurses will play it some while I am gone.

A bit of perspective

All our family members are going out of the ever loving minds. They can’t wait to get back in to see Ty (he is still on restriction). I know 2 grandmothers are going to get downright cranky soon:). As so many have not seen him up close and personal, it is really hard to grasp his size. I took a few pictures today to try to help with this a little bit more. The beanie bear picture I used yesterday only works if you know how big a beanie baby is (or how little I should say). I posted another picture tonight that shows a regular beanie bear and the baby beanie bear. Ty is cuddling the baby. Still, it isn’t actual size but I think it helps a little bit.

I also took a picture of him with my favorite childhood doll Kizzy. When I first saw him I thought “he looks about the size of Kizzy” so I measured her and sure enough, 13.5 inches just like Ty. She is actually a little bigger than he is though as she is not proportioned as tiny. Of course this only helps you if you can see Kizzy but it was the best I could do today. I would like to take a picture of Kizzy with a full term baby and then you could really see the difference. Any volunteers??:) And before you ask, I chose an African American doll as a child because I thought she was prettier so no, Ty is not quite that pale. The picture is posted on his slideshow.

Thank You’s

* Laurie Kurluck - All I can think to say right now is “Wow”! I got an email from Brooke about all the dinners you organized through your dept at work. I had to read the note twice for it to sink in. Thank you! Tonight was our first night using a home cooked meal out of the freezer (Brooke made us Chicken Divan and it was great!). It saved so much time. Right now I am with Tanner in the morning, at the hospital all afternoon, go home for an hour to leave again with Jim to go back to the hospital (about 4 hours in the car a day). Saving this much time and money while eating something other than fast food was wonderful. I want you to know that we appreciate all you have done! Thank you Laurie!

* Grammy Sweetie - Ty loves his lamb:) LOL you know why!!! I also can’t wait to use his new duckie blankets in his isolette. Dressing up his isolette helps me feel like I am taking care of him. A baby snuggled in the blanket Grammy got him just looks so much more comfortable and happy than laying in a diaper under a heat lamp don’t you think?

* Grandma Cheri - I saw the red bear! Ty said thank you for adding to his collection. He is loving his beanie babies. It was pretty much all non verbal conversation but he did raise eyebrows at me today so I am sure that is what he was trying to convey:).

*Great Grandma Pat - that is the cutest frog ever! I wanted to cuddle it myself! Ty thanks you!

Mama’s Ty Journal

Ty,

As tired as I feel right now, this is my favorite section to write so I will tary on a little longer. This morning your Grammy Sweetie and I were driving to get you some “prizes” (as your brother would say) and we were talking about the song I wrote out to you last night. I was telling Sweetie about the first song I ever heard Mark Schultz sing. Half way through my explanation to her my heart sank and a lump filled my throat. I couldn’t speak. How could I have forgotten? How could I have forgotten the words to that song are now a complete reflection of my own heart? Oh my gosh….I can’t believe…..THAT song…..the words….. they were never supposed to apply to me…I cried every time I heard it…I never wanted to feel it….and now I do….and now I know exactly why I cried.

No further explanation will be needed. Here are the words:

Song: He’s My Son
Artist: Mark Schultz

I’m down on my knees again tonight

I’m hoping this prayer will turn out right

See there is a boy that needs your help

I’ve done all that I can do myself

His mother is tired

I’m sure you can understand

Each night as he sleeps

She goes in to hold his hand

And she tries not to cry

As the tears fill up her eyes

Chorus~

Can you hear me?

Am I getting through tonight?

Can you see him?

Can you make him feel all right?
If you can hear me

Let me take his place somehow

See he’s not just anyone

He’s my son

Sometimes late at night I watch him sleep

I dream of the boy he’d like to be

I try to be strong and see him through

But God who he needs right now is You

Let him grow old

Live life without this fear

What would I be

Living without him here

He’s so tired and he’s scared

Let him know that You’re there

Chorus

Can you hear me?

Am I getting through tonight?

Can you see him?

Can you make him feel all right?

If you can hear me

Let me take his place somehow

See he’s not just anyone

He’s my son

Can you hear me?

Can you see him?

Please don’t leave him

He’s my son

*Again, you can purchase this song off Napster for 99 cents if you would like to hear it

All mommy’s love little one……night night.

Jan 24th, 2004 - Day 7

11:40 PM

Ty’s Day

Guess what everybody! Ty celebrated his 1st week birthday today!!!! If that isn’t cause for excitement and celebration than I don’t know what is! God has given this precious bundle of God’s mercy to all of us for a full week and I have been grateful for every minute of every day. I also acknowledge that Ty’s life is a gift to more than just our family and Ty’s genetic family. From the responses I have been getting, it is clear that God has placed Ty in the hearts of so many people and called so many to pray. I am confident that prayers are being lifted to the heavens on his behalf at all hours of the day and night. I know this because every day I am getting emails about when God woke individuals up to pray for Ty. From my experience, when God moves this many peoples heart to prayer, it’s because He wants to reveal His glory on a magnificent scale! Again though, I need to remind you (and myself), God loves Ty more than we ever could. I am this little guy’s mama, but I am the daughter of the King first and I know that we MUST trust what He chooses for Ty. I know God will get glory through Ty’s life but I am trying to wait and see how instead of telling Him what I expect Him to do (even though the mommy in me really wants to). Ty’s life has turned our life upside down. We are crazy in love with this little boy. I sit and stare at him for hours – literally (you can even ask his nurses!) and so often the tears just stream down my face as I rest my head against his isolette. For as much as I wish he wouldn’t have come this soon, for his sake, I also feel so incredibly blessed to watch him, to watch a miracle every day. Ty’s life draws me into worship every day because as I look at his tiny frame I feel totally in awe of our Creator. Even though Ty has some very hard day’s ahead, when I see him cuddled with his little baby beanies, my heart is resting so peacefully knowing that God prepared Jim and I for this…for him…for this moment. I long to take him in my arms and shower him with all the love inside of me. God gave me this time of incredible bonding with Ty and I will be thankful my whole life for it.

Now for the details…

Today I was granted the privilege to do two things for Ty. First, I got to feed him his very first 1 cc of preemie formula! You knew I was looking forward to this. Maybe this sounds a bit anticlimactic to many but it was pure joy to me. (If there are men reading this, I know you are rolling your eyes and skimming for “Just the facts Ma’m” – sorry guys, just can’t do itJ).

Secondly, this protective mommy got to rally behind her son on a health care issue. Here is what happened. Each day Ty has been making great progress and his vent settings keep getting lowered. His Dr. decided that he was ready for CPAP (still on vent but air is delivered through the nasal passage). I was happy that he was going to be extubated (tube removed from his throat) but was concerned about this decision. My concerns? Well, for the most part he is doing really good but he gets tired. He does not breathe on his own super consistently. I know, I sit there and listen and I watch his patterns. When he sleeps deeply he often quits breathing entirely. This is not uncommon for his age. In the womb he would barely even be practicing breathing much less responsible for every breath. This is tough work for him! He also still tends to desat some with handling still. Not every time, but often enough. As a result, I didn’t like the idea that they would extubate and then have to turn around and reintubate. It’s quite a process to put his tube in and get it in the right spot and it is definitely not a fun experience for him. Besides all that, without the tube, if he does have trouble they will have to hand bag him more and I don’t want that. On with my storyJ……so I go out into the hall and I call Jim and explain the situation. Jim doesn’t like the idea anymore than I do. He say’s call Cheri, she already discussed this with the nurse this morning. By the time, mommy, daddy and grandma conferenced, we were unanimous. Ty wasn’t ready. I went back to his nurse and asked for this decision to be re-evaluated. She was also on “our” team but knew that what the Dr. said would stand. I said, “I understand that but tell me how YOU feel.” When she said “He’s not ready.” I said, “You are the one who has been watching him breathe all day, can you go discuss this again because I trust what you feel – Ty’s family is behind youJ.” She did as I asked and brought the Nurse Practioner back in. In the meantime, Ty was not breathing nearly as well as if to say “Listen to my mom!” (They had him on 10 bpm in preparation for the extubation and he just said “No!” so they turned it back up to 20 bpm. He was much happier with that. I am learning that the Dr.s like to push them a little bit from one stage to the next. I am sure they have excellent reasons for this. As a mom though, I trust my instinct and when several of us feel strongly about something like this, it’s time for mom to go to bat. We won this round – go team!J.

We’ll have to wait and see if Ty can tolerate the formula yet. I have a feeling that he won’t. The contents in his tummy that had still not been digested lead me to believe his little body isn’t ready. He got more tonight though so I guess he is handling it well enough so far. We’ll see……

His billyruben raised a bit today and he needed billy lights once again (pretty normal to take this step back). There weren’t any available so they gave him a billy blanket (I may be making that term upJ). It glowed a neon blue and he did NOT like it. Here he was all quiet and content. He had his caterpillar between his legs for support and his soft red bear hugging him from behind and his puppy blanket covering him. All of a sudden, he gets this yucky blanket on him. (I have a thing for soft blankets and this one did not meet my soft criteria by a long shot!). His little shoulders and arms were just wiggling trying to get away from it. It was cute to watch the struggle actually buy I did feel sorry for the little guy. At least he didn’t have to wear his sunglasses with the blanket – that was one advantage.

His weight is down to 864 grams (1 pound 14 ounces by my calculationsJ). I just called his nurse and he is getting ready to have his PIC line put in. I was hoping I would be there for that. He has been sedated and seems to be tolerating it well. (Sometimes, I wonder if I am telling you wwwaaaayyy more than you want to know then I remember there are grandma’s and great grandma’s reading this!)

Tanner Update

Please just pray for our little guy that he can adjust to this chaos. This morning when I left he sobbed his heart out and hid behind my chair covering his face. It broke my heart and I left crying too. He just is not used to being away from mommy this much.

Amanda Update

Many of you have been asking about Miss Amanda! I asked her permission this evening to share a bit of her day with you. Many of you reading this already know and love Amanda but some of you haven’t had the blessing of meeting her. Amanda’s 17th birthday is coming up next week (Jan 28th) and guess what she wanted? A puppy! Amanda “adopted”J a Queensland/Aussie/Golden mix and named her “Maddie”. They are in love. Maddie was just what Amanda needed and Amanda will be just what Maddie needs. Grandma Cheri is a very wise woman :) !

Amanda is such a fun loving bubbly person. She is very secure and confident and carries herself with grace. She is loving and compassionate and, obviously, very unselfish. I also think it is wonderful that she doesn’t mind this violation to her privacyJ! She is just like me, very open. I think that is another reason why God put us together. It makes me wonder what opportunities the two of us may have together to promote adoption. I can’t imagine being partnered with a more perfect person. But then again, why should I be surprised? That is just like God to work it out this way isn’t it?

Many of you have asked how Amanda is doing emotionally. I can’t answer that question for her. I can’t put myself in her shoes and my heart can only imagine it. Is this hard? Of course it is hard! The hardest thing she has ever done. My daily updates are bittersweet for Amanda. She has graciously and lovingly allowed me to publicly post all this information about us. She knows that when she reads these updates she will be reading the journey’s of another woman calling herself mommy to the child of her womb. That could not be an easy thing. That is the bitter part for her. The sweet part though is that I don’t think Amanda would have it any other way. For as hard as it must be to watch Jim and I move into the role of Ty’s Daddy and Mommy, she is also comforted knowing how much we love him and how committed we are to being his parents. She knows that Ty is safe and loved and I think that goes a long way in helping her heart. Maybe sometime she will want to speak for herself on this…we’ll see.

Amanda is a Junior in High School. She is continuing her education and will graduate on time. She hopes to be a Doctor someday. She loves sports (basketball and softball particularly) and can’t wait to “get back in the game”. She has set such an awesome example throughout her pregnancy with her precious reverence for life and her compassionate heart in regards to what is best for Ty. And something else that touched my heart this week……Amanda is already beginning to consider the possibility of one day adopting children. This say’s so much. Amanda obviously knows that the love that an adoptive mother has for her child is not any different than the love a biological mother has. She knows that true love has no bounds.

Following is a picture of Amanda. Pictures of Amanda and Maddie coming soon (I hopeJ).

Mama’s Ty Journal

Son,

There is so much on my heart to share with you. I have talked about Amanda on your web page a lot tonight and she is still on my mind. I know that by the time you are old enough to read what I have written for you, you will know and love Amanda too. The decision she made concerning you was so hard for her to make. She loves you and she always will. She made one of the hardest decisions anyone would ever have to make and she did it for you…out of great love. I hope you will grow up cherishing that in your heart. Knowing that for the few short months that she carried you, she gave you all she had. I did some research tonight and I could not find one 25 week old baby that was born at 2 pounds. Every baby I researched under 29 weeks weighed less than you did. When I first met Amanda she made a point to tell me that she was trying to take very very good care of you. Obviously she did exactly that. I feel so proud of her. I think every decision Amanda has made concerning you have all been to your great benefit. Daddy and Mommy are so incredibly proud of Amanda for this. Amanda has character and she also knows how to be accountable. Very few adults are capable of assuming responsibility for their choices much less someone Amanda’s age. Some people have said hurtful things to Amanda because of her choice. They have asked her why she didn’t abort you. They have asked how she could just “give you away”. Amanda did not “give you away” son. She placed you with us for your sake irregardless of the great cost to herself. Her decision was born out of love and I know that you will have a heart full of gratitude for her your entire life. You see it wasn’t that she “couldn’t” raise you. She could have and I am confident that she would have done a good job even though it would have been very very hard. Instead, she chose to write a list of what would be best for you. When she was done with her list, she decided that the very best and most loving thing she could do for you was to allow your dad and I the incredible gift of being your parents. She was the first person to know and love you and make a love based decision for you. Daddy and Mommy are still in awe and overwhelmed with Amanda’s love for us and her faith in us. There could be no greater gift given and we know that we were blessed beyond what we can even comprehend to be chosen for you. (And furthermore, if your Daddy and Mommy ever ever hear someone say something hurtful to Amanda in our presence they will really wish they hadn’t!J).

Because of our great love for Amanda, I am anxious to see her in you. The moment I first saw her I thought “I hope he gets her eyes.” Amanda has happy eyes. They are a beautiful color brown with such pretty long eyelashes. (I also loved your Grandma Cheri’s nose – she has a perfect nose. I keep telling her that I think God answered that prayer;)! God knew how much Daddy and I would love Amanda and her family and I believe He intended this adoption for all of us. Adoption is a beautiful word to God. God understands the heart of a birthmother – He gave up His only Son. God also understands the heart of an adoptive mother. He adopted us and grafted us into His line. Our adoption in Him is complete. His love for us knows no bounds. When He was knitting you together in Amanda’s womb, He already knew how you would bless all of our lives. God, in His great sovereignty, planned for this. He created you to be our son. He also wanted Amanda to be a part of our family story. I am anxiously watching to see the beauty He will create in Amanda’s life. Apparently, God decided, for reasons we may never know, to give Amanda the first part of pregnancy with you, and me the secondJ! I didn’t think I would get this time with you but God decided to deliver you early – wrapped up in love.

May the angels guard you while you sleep baby!

Jan 25th, 2004 - Day 8

11:30 PM

Once again, it is 11:34 PM and I am just starting on this update. It has just been impossible to do this any earlier. By the time I am home from the hospital, have Tanner in bed (and this is quite a process�brush teeth, cold cold water, read bible story, pray, tuck in�.you can�t miss a step and both parents must be present � those are Tanner�s rulesJ) and finally sit down to write this, I am approaching midnight. I would love to say I am getting support from my family in this but quite honestly, I am not :) . When I talk about being dead tired I hear �Okay � sleep but first write Ty�s update� :) . As some of you crazy people have actually been telling me that you are waiting up for it (good heavens), I am trying to be very faithfully committed. Not that I am complaining � it is a joy to write this every night.

(*Note: I just checked the statistics on Ty�s page for today and it had almost 2000 hits for today alone!)

On to Ty�s Day

This morning before church, I made my morning call to his nurse. I was disappointed to hear a couple of things. First, Ty did not get his PIC line. I was anxious for this to be over. This kid has so many wires coming out of him it is unreal. His umbilical lines have all been removed so it is becoming very important that he gets his PIC line in. At the moment, he has an IV needle taped to his little hand and he doesn�t like it. Apparently, when they tried to put the line in last night, they just couldn�t get it so they decided to give him a break (which I do appreciate). Sometime tonight he should be getting it but we�ll see. The nurse suggested I not be there to watch this. It is not a �major� thing but still she thought I would be better off not watching it. I think she knows that I desat when he does and didn�t want to have to worry about me on top of matters. In fact, she also told me that she made sure to get his IV in before I got there. She is a pro at it but she knew if she had to stick him more than once it would make her nervous if I was watching because she knew I couldn�t bare to watch continuous poking! Good assumption on her partJ.

The second thing I was sad to hear was that Ty had a hard night. He desated a couple of times and by the time I called this morning his oxygen was up to about 50% (from 21%), intensity to 18 (from 17) and bpm to 35 (from 20). This is that 2 steps forward one step back thing I have been warned about. He had some not so good blood oxgen tests today but then this evening they were a lot better.

On a good note, he has tolerated his formula better than I expected and he is continuing these feedings. Everyone has warned me that this feeding process is very stop and go so jury is still out.

So all in all I don�t think I would classify this as a �bad� day � just not as good as the previous two. Will somebody let us all of this merry-go-round???? I am hating this!!!! This has been the longest week of my life. Last Saturday feels like 2 years ago. Funny how life can change so fast. I never would have dreamed we would be in this place now. My mind is still thinking about �when Ty comes� and then I catch myself �He is already here!�. I haven�t adjusted to all of this yet and I am not sure that parenting in the NICU ever normalizes.

While my heart is dwelling on happy thoughts of Ty coming home, that reminds me of something else. Before Ty was born, we had been discussing having Ty�s baby dedication when he was about a month old. We wanted all the family to be there (including genetic). In light of all that has happened, I think that this will be one of the most emotional baby dedications I could ever have imagined. Not only will we be celebrating the commitment of two families wanting to dedicate little Ty to the Lord, but we will ALL be praising God for the miracle that he is. All this to say, I am thinking that we may just post an open invitation. I think there will be quite a few people ready to celebrate by the time Ty comes home! More details on that later.

Thank You�s

Heather Kurluck � You go girl! That is exactly what I wanted!!!! Now if only we can find the striped hat to match. Thank you so much for going out of your way to do this for me. I loved everything you picked out and no I don�t think the one pair are too girly � especially not with a green onsie, you know? Love you! (I sent a picture of an outfit I wanted for Ty to several girlfriends so they could watch for it while shopping. Heather found something very similar for me � and a bunch more to bootJ! Of course it now feels like years before he will be able to wear it but I hear they really do grow�eventuallyJ).
Darin and Jodi Zimmermann � Thank you for spending the day with your nephew. He definitely needed Uncle Darin time (and Aunt JodiJ)! And thank you thank you for the cell phone too!
Alma Uribe � I was thinking tonight that since the nurses have put Ty on visitor restriction, they may soon put him on beanie restriction too. His beanie basket is steadily growing, and as you have been the major contributor, you did NOT need to buy him two more today! (But I did love themJ)! I sure appreciate you and all the love that you give us.
East Valley Bible Church � Thank you for the care packages that you leave for NICU parents. What a wonderful testimony.
Sarah Longo (Mom) � Grandma you have been busy busy busy! Curtains this weekend, painting this week, star pillows and tractor pillows, and even last minute mini blankets today just so I could get them to Ty in the morning. Not to mention, the home away from home and the great roast dinner. We love you and appreciate you.
Deanna Zimmermann (Mom) � Here is a funny for you. I was trying to ask one of Ty�s nurses a question yesterday and she refused to answer until I told her where I got the little ducky blanket! It�s a real hit!
Brooke Zimmermann � For once again stocking my fridge with the necessities. What would I do without ya?
Amanda Update

As promised � pictures of Amanda and Maddie! They are doing fabulously! Just pray that puppy doesn�t jump on her incision!!!! Protective me is a little concerned about that part. Her c-section incision is at the yucky burning stage. I told her to try ice packs as they worked for me. Any other suggestions out there? And while I am asking for suggestions�anyone out there know how we can get this chick to clear out her voicemail everyday so that I don�t have to keep getting that darn �Voice mailbox is full� message?? Sheeeeeshhhhhh���.J! And yes, I know, in the earlier picture she was a blonde. I am thinking of adding “the many colors of Amanda’s hair” page! Hee hee!

Mama�s Ty Journal

Ty,

Mama is very very tired tonight so my journal entry to you may be a little shorter. There is something that I wanted to share with you tonight though. Something that I have been thinking about all week.

A couple of weeks ago, mommy was re-reading a book series that I love. In my life, I have found that God speaks to me in gentle whispers and often times I hear His voice best in the words on a page. So many stories I could tell you about God preparing me for what He was about to do in this way. Anyhow, I came across a short paragraph in my book that I had highlighted in April of 1999. When I re-read the passage, tears began to stream down my face. It was significant to my heart again.

In the book, Prince Thomas is speaking with his faithful servant Joan. He is broken hearted because his wife, Lady Elizabeth has been unfaithful to him. The passage begins with Joan.

*********************************************

Taken from �By Love Redeemed�, Dodson, Deanna Julie, page 205
�We will pray about it love. Is not our God able to do much, much more than we can ask or even think to ask of Him? Can He not make everything right, even now, if we believe in Him to do it?�

�Oh Joan, I need Him,� he murmured. �Why will He not hear me any longer?�

She kissed his temple. �He hears, my Tom. He always hears. And He knows what we need.�

�I can see nothing in any of this to fill anyone�s need,� he said, with more despondency in his voice than Joan had ever before heard, and she kissed him again.

�You are strong, boy. You�ve always been strong. Perhaps, knowing her weakness, the Lord gave you to Lady Elizabeth because He knew you could help her bare up under it and show her His love, too. A lesser man would have destroyed her over this.�

And this Ty is mommy�s favorite part:

�And who�s to help me bare up under it?� he asked in desperation.

�There are everlasting arms to bare you up, my love,� she said softly. Then, holding him closer, she began to pray.

This passage came from Deuteronomy 33:27 that says �The eternal God is your refuge, and underneath are the everlasting arms��

Ty when I read this book again a couple of weeks ago, that verse once again jumped off the page at me. I think I asked that question over and over for years. Because the Lord had a call on my life, and I knew I was called to continually step up to greater spiritual maturity, I often found myself asking �and who is to help me bare up�? It took a lot of years for me to hear the Lord say �I am your refuge. I will bare you up in my everlasting arms.�

Baby boy, you have no idea how important it was that mommy understand that verse before your birth. I think I spent too many years trying to figure out how to be �strong� and I had to learn the hard way that I can�t be. When I try, it is a �pull yourself up by your own boot straps� kind of method and years of pulling were beginning to break those straps right off. Your Daddy said it best this week. He said, �I don�t think these tragic experiences in our life have made us stronger � I think they have made us softer.� I completely agree. It isn�t about being strong � it is about having a softening of the spirit that leaves us open to the spirit working within us.

Last week on my way to the hospital one morning this verse kept going through my mind. I loved the way the author had presented her heart and was thinking about emailing her and thanking her. While I was thinking about the book, I remembered something. Part of the tragedy in the book, part of the reason that Prince Tom needed help in baring up, part of the reason he needed refuge�was because Lady Elizabeth kept going into pre-term labor and her babies were too young too survive. Very interesting that the Lord would use this story to prepare my heart to start placing myself in His loving refuge.

Once again � I don�t think it was an accident that I highlighted that passage to come across it when I needed the reminder. What a loving God we have. He looks for ways to love and teach us and if we are listening, we hear Him whispering.

Son may you always remember that He is your refuge and that underneath it all are His everlasting arms to bare you up.

I love you Ty.

Jan 26th, 2004 - Day 9

11:30 PM

Today was meltdown day for me. Don’t worry – Ty is still stable – I am just notJ. As of today, we have been on this fast moving train for 10 days now and I am realizing that it will not slow down anytime soon and I am tired tired tired. Tired mother’s make for cranky and emotional mother’s. That is where I am at. Tonight, after we left the hospital we were walking through Walmart to get last minute items for Grandma’s painting tomorrow (she is starting on Tanner’s big boy room and Ty’s nursery). Tanner gets very unhappy in Walmart and starts doing his little I am really angry “dance” while crying because he really thought I should buy him a truck. (Like Tanner needs another toy…..good grief you should see his room). Anyhow, I continued to walk holding his little hand completely ignoring the outburst. Jim turns and looks at us like “Are you going to handle this?” I was without energy. The last of my coping skills left me several hours earlier. I just had to plead mercy from Jim and let him take over. (Oh, and by the way, none of this was made any easier by the fact that Tanner learned a new phrase in Walmart “Ma – now!” Don’t worry – mama is going to put an end to that one in a hurry! Ever been thereJ?

Ty Update
Not a tremendously easy day for our littlest son either. They tried his PIC line last night for the second time and once again – no go. Finally this morning, after much prayer on our part, they got it in. I was very disappointed though when I learned that this supposed “permanent” solution only lasts 3 to 4 weeks max. If he is not ready for full feedings by then, they have to put another one in. My poor poor baby! His stats were pretty similar to yesterday but his blood gases were pretty good today. He had two desat episodes though after handling (no one was surprised after a high stress day with the PIC line). To make matters worse, he got his first suppository this afternoon. At least it worked. Even though his day was fairly good, I couldn’t help but sit in the rocking chair by his bed and cry. The nurses tried to comfort me but sometimes there is just no comfort. The bottom line is – I am tired of seeing him suffer and I know that this is only the beginning and my heart was just breaking for him today. No amount of reassuring that “today is a good day” was going to help. I hate this. Every mother who has had a sick child hates this. You can’t prepare yourself for it and you can’t hide from it. I don’t want to hear “He is a micro preemie and micro preemie’s do this” one more time! I have that memorized already. I still don’t like it. I am never going to like it. He is my precious little boy and every instinct that I posses wants to protect him and cuddle him and keep him safe – and everything is completely out of my control. Control….frustrating thing. So much of this boils down to not being able to control. This is a battle we all fight in our various situations isn’t it? When will we learn to just surrender? Moment by moment day by day. I was weak and weary today and I hate to say it but it just got the better of me. Maybe I’ll do better tomorrow. My “heart sister” Heidi, wrote me recently and commented on my vulnerability when I write. I can’t write and not be vulnerable. I can only write what is on my heart and what overflows is honesty. Sometimes that is a good thing – sometimes is probably isn’t. If you are still reading this everyday and are following us on this journey, I would rather you know the truth – the real woman behind this page – the woman who loves fiercely and grieves deeply – the woman who is imperfect and can’t do it all right – the woman who just gets a little out of control some days and needs a good cry. I’ll try to rally up again tomorrow but tonight I just thing I need to sleep. Now you at least now how to prayJ!

Mama’s Ty Journal

Son,

Tonight I got to sing to you. The nurse turned the lights down low and just let mommy comfort you. I laid my hand across your chest to help you feel safe. It is amazing how much of your body I can cover with just my hand. You are absolutely perfect. I love everything about you. I wanted to pick you up and just squeeze you and kiss you all over. This wait will be agony…

I love you precious.

Jan 27th, 2004 - Day 10


Jan 28th, 2004 - Day 11

2:00 AM

My heart is so heavy with grief tonight, I just don’t know that I can find all the words to express all the emotions I am carrying. I will warn you right now – this will be very long. I can’t sleep and so much is on my heart. I won’t be able to rest until I write it out. If you can’t stick in there with me through this long narrative, it’s okay. I am writing this for me – I need to write it - but thank you for loving and caring enough that you would even attempt it.
There were many things in my day today that made it hard to bare, but the worst was being told that Ty’s ventricular hemorrhage has advanced to a 2 and 3 (I think) from a 1 and 2. This is not good news. At the 1 and 2 level, babies can continue on with normal development with little or no future problems from this bleed. At a 3 level, statistics show that problems will likely develop. At a level 4 they almost certainly will and will likely be severe. I would give you more specific information on this but to be honest, I just don’t have the heart to research it right now. I know that (for example), more minor issues can arise like ADHD or Cerebral Palsy, severe mental and physical handicaps, etc. Feel free to research this on the web on your own, but for now I just can’t go there. Will this get better? Worse? Stay the same? I don’t know. No one but God does.

My respect and love for the neonatologist on duty tonight grew exponentially. He heard rumor that Ty’s head ultrasound didn’t look so good. He decided to investigate and look at it himself (he has past experience reading these ultrasounds). He came to talk to me and told me that he had expected it to be much worse than it actually was. He explained that it was definitely concerning but that we would not likely know the true impact of it for a very long time. As we watch Ty grow we will just have to watch for signs of developmental or physical issues. He is going to have a neurologist talk to us and explain what this means in more detail. For the record, I have had mom’s write me and tell me that their child had level 3 bleeds and are okay today. That is encouraging to me. I know this is not always true though and am trying to preparing myself. One thing the Dr. said that I will never forget was “As parents we have dreams for our children…of children being perfect and healthy. Sometimes though we have to change our dreams. This isn’t necessarily a bad thing – just different than what we had planned. You will still love and be greatly blessed by this child.” He is exactly right and I appreciated him so much for saying what was already on my heart. He validated Ty’s life for who he is irregardless of what challenges he may have to face. I needed that and I will never forget him for it.

Since I have jumped to the worst moment of my day, I’ll back up a little bit. When I first came in Ty was doing pretty well all things considered. When it came time for his feeding though (trophic), our day started unraveling. Before giving him more formula they suctioned his tummy to make sure what they had given him before was digested. It wasn’t and it was turning green. They decided to hold off on his feeding and check it again in a couple hours. It was darker green. I wish I could tell you what this means but I can’t. Apparently it can be a sign of any number of things and at this point would be anybody’s guess. For the moment, his little body has decided it can’t digest food yet (not real surprising) so he will be getting a tummy ultrasound (I think).

After this, each time he was suctioned there was more and more old blood appearing from the lungs. The volume was concerning. The good thing is, it was evidently old. They are running some tests on this as well. Early on Ty had a pulmonary hemorrhage. Is he having it again or did he? I just don’t know.

At around 5:00 PM when his nurse was suctioning him he had a bronchospasm. This is when the little lungs just freeze up. His heart rate plummeted into the 40’s (and probably lower I didn’t have the nerve to look back up) and his oxygen down to the 30’s. I was feeling close to hysteria myself while they were bagging him and so some tender hearted nurses led me out of the room so I didn’t have to watch this. They tried to distract me but I couldn’t be distracted. Within 2 hours of this episode, the Dr. delivered the news on the head ultrasound. Oh, and I forgot to mention that his sugars skyrocketed as well during this time. They did more blood tests tonight to make sure he doesn’t have an infection (sepsis) on top of everything else. (And I just called 12:00 AM and they think he does have an infection but haven’t isolated where it is right now).

I don’t know how to make these words on this page present the reality of my day. I felt like I was falling all day. By 7:15 PM I was holding Ty’s hand trying so hard not to cry my eyes out. Ultimately, I couldn’t take it anymore and I told him I loved him and drove home.

Amanda
For all of you close to Amanda’s heart, this is your official reminderJ! Tomorrow is Amanda’s 17th birthday.

Thank You
· Jim Brinkman – The day I married you almost 10 years ago I knew that God had chosen us for each other and I knew we would have a wonderful life together. We have been through so much together and it appears we are headed for the valley yet again. At least we have experience being in this place and have learned to bond more through it. Tonight when I called to tell you that our baby was at serious risk with a level 3 bleed, I was so thankful for your strength. I have been praying for you through this too. Praying that God would give you courage to face this. I know it must be so hard to carry your own emotions and feel responsible for me, Tanner, and Ty too. When you said “What changed from yesterday? We are still in the same place. Did you expect this baby was going to come home healthy and perfect?” My heart filled over with pride in you. The question you asked said it all. You had already been preparing for this and had been releasing it over to the Lord. You are trying to help me take each day as it comes and give it to the Lord come what may. Our boys are so lucky to have you for their daddy and I feel abundantly blessed to get to be your wife for life.

· Brandley and Stephanie Williams – We didn’t get to eat the dinner that you left for us yet but we sure are thankful we have it. Thank you for doing this for us. We love you guys (and Parker tooJ).

· David and Aimee Zimmermann – Holy Cow! What can I say? For your privacy I won’t publicly say what I am thanking you for but…you should not have done it, I can’t believe you did it, I am incredibly grateful for it, and just….wow! My baby brother and sister are taking care of us and I so appreciate your tender tender hearts.

· Dr. Waterkotte – I don’t have words right now to thank you for your compassion. You went out of your way for me on more than one occasion and it made a difference. You are honest and you are comforting even the news is not easy to deliver. Mostly though, you have a heart for children and recognize that every individual has great worth and value –come what may.

· Cheri Brennan – Cheri you and I both are just “getting through” this every day. I am so grateful to you and for you. We are going through this trial by fire together and each day I love you more. You have been one of our biggest supporters through everything. Everyday I see some beauty in this crisis – as hard as it is, you, Jim, Amanda, and I are incredibly closer for it. Jim and I appreciate who you are every single day. We think you are a very wise mom and have incredible respect for you. Everything about you is loving and unselfish. We will always be grateful God brought us together.

· Judy – Ty’s Day nurse (today). In Ty’s 11 days of life he has had 12 nurses. This has been overwhelming to me as well you know. He has received excellent care from all and I have been so fortunate and grateful. I, however, was nearly as fragile as he was today and I needed you. I prayed yesterday that God would send me a loving compassionate nurse because I knew that I was near the breaking point. He sent you and I knew that you were His gift to me today. Thank you!

· To all the mommies from BabyCenter and ParentPlace - Your love, support, and encouragement warms my heart every day. Thank you for all the precious notes you are sending my way. Please forgive my lack of response. I want to respond to each of you but just haven’t been able to yet. (And thank you Kristi Simpson for posting our link there – we need all the prayer support we can get).

· Dori Parker – I know you have been here in this place. I know you love me and are hurting for me. I am grateful you called and shared your heart. Throughout the day I was reminded of several points you made – control for one thing! Thank you.

· To everyone who has written in the last week and have not heard a word from me – I am very sorry. I am so thankful for you. A few of you have written me long emails and then apologized for taking up my time. That seems very funny to me after I know you spent your whole lunch hour reading my updatesJJJ!! I am taking the time to read them even though I don’t have time to write back yet. I appreciate all that you share with me and your love – never apologize.

To my Tanner,

You are breaking my heart little guy. This morning when you realized I was getting ready to leave the tears started falling down your precious face and you began following me through the house everywhere I went. I was trying to not even look down at you because I couldn’t bare it. I know this has been so hard having mommy gone so much when you have so rarely been away from me. Grandma was watching you (and you love your Grandma) but right now, you just need your mommy…and I have not been there. I know that my tears create fear in you. You don’t understand what is going on and I see you emotionally responding to everything. I know your emotions are a reflection of mine. I want so badly to be everything you need. To protect you from mommy’s pain so that your life does not change and you are not impacted. Sadly, honey, I just can’t fix this. The worst part was when you asked your grandma to help you carry your car seat out to the truck. I watched you desperately pulling your car seat across the family room hoping you could get it out there before I left without you. Tears are falling as I write this. Honey, you are my joy and it hurts mommy’s heart so much that each day I fail you. When I leave your brother I feel the same way. I am trying my best to figure out how to provide balance but I just don’t know how to do this. I am praying that your little heart can forgive me and not resent this situation. Today I don’t know what else to do. I love you with everything in me. – Mommy

To my Ty,

Sweetheart – I could write a novel to you tonight but I think it would be in all of our best interest if I save the things I have to say to you for later because right now, it is God I need to write my heart out to. I love you baby. – Mommy

To my “Abba” Daddy,

And now the tears come…I think I have waited all day for this moment. I need to write my heart out to you so that I can figure out how I feel. Some may thing I am crazy for allowing something this personal to be public…I probably am. I just have the sense that this is more than my journey though and I figure there are other people that are going to say “ditto” to what my heart is going to say…so again I’ll just be vulnerable.

These are the days in my life I wish I didn’t have to go through and would love to never go through again. Wishful thinking. I am overwhelmed with such deep sadness for my baby Ty, for the babies I have lost, for the babies that never were…sometimes they just all begin to blend together into one enormous heap of grief.

You Lord were also a man well acquainted with grief and sorrow. You watched your Son suffer and held back your own hand…for me. I’ll never know how you could love me that much.

So many have lovingly said “Trust You”, “God will work a miracle”, “Faith will bring a miracle home”….etc. You and I are on a totally different page though. I do trust You – well mostly. I know that I should trust You and that everything I know about you demands that I give you my full trust, but my weak human nature behaves badly sometimes and I fail. With each loss though I believe you have taught me something absolutely invaluable. You have taught me that YOU are God and I am not. Your ways are not mine. You see the end and I only see little pieces of the beginning. Your miracles aren’t always wrapped in the beautiful paper I laid out for You. Your “justice” isn’t always mine. Your timeframe is eternal – you are not bound by my clock. Your love for me is something I will never be able to comprehend. You alone are good – even today and especially today.

Lord I do have the sense that you are working a miracle. I feel that as deeply as I hurt right now, you are in control of this and are working out a plan that I couldn’t have dreamed of…a plan I may not understand until I see you face to face. You are comforting me though in the very depths of my spirit. I feel like you are telling me “I know you hurt daughter – now is when you have to trust me to carry you.”

I am not asking you to heal my son and bring perfect health to him. I fight this. Every day I want to beg You, plead with You, throw myself prostrate on the ground at your feet. I somehow keep stopping myself. Some may think I lack faith in You. I don’t. I have just learned through years of loss that you love me and are working in my heart for Your purpose. I don’t want you to change Your plan. I know in the deepest part of my soul that you have already made a decision regarding my little Ty’s future and You want me to let you be God and trust you with what You see fit to do. This means I must carry Him daily to You. Lift Him up and hand Him over. I feel every day like I approach that place on trembling knees with a well of grief springing up and I beg you for courage to do this. Help me submit to You. Help me give Him back when I want to hold onto Him for dear life.

I find myself trying to micro manage everyone around me. Poor poor nurses don’t stand a chance. Help me to have compassion and mercy in the midst of this crushing pain. My controlling behavior is not going to help anyone – certainly not my son. Thank you for those who have gently addressed this with me with the best and most loving intentions in mind. I hate to feel helpless Lord. I always feel helpless. I have lost and lost and lost and lost and I can’t stop it. Now I look at my little baby and my heart hurts so much I can’t breathe. Will I loose this baby too? Will he always suffer? Am I capable of being the mommy he is going to need? Can I do this? Can I stand by his bed and watch this day after day after day? Lord the miscarriages, you know how heavy…how I waited and watched and cried so many tears I could fill the ocean. The infertility that put me in this place to begin with… Yet even as I write this out to You I really do know that you put all these things in my life as a gift. Some of the beauty of that gift I already see in the eyes of my two boys. Without infertility and loss I wouldn’t have them. I would suffer this again for them – of course I would. Each time I have prepared my heart to loose children, I have said “Lord I can’t do this. No mommy can do this.” Yet I did. You got me through. I lived to tell about. I still breathe every day. You have helped me overcome anger and bitterness and helped me to understand You a little more in the process. I am grateful for that. I wouldn’t want to be who I was and would have been. Thank you for this grief I now bare. From past experience, I know that at some future date (even if it is when I am in heaven) I will be overwhelmed with Your goodness for choosing this for me.

This was not my plan Lord. In a sad sense it was almost laughable when Amanda went into labor at 25 weeks. Of course she did. I don’t say this with bitterness, just not understanding. You have asked so much and I don’t understand why. I don’t want to ask why either. It doesn’t matter why. It just is…I have to trust You or not…pretty black and white. I get angry with myself for my tidal wave of emotions. I want to be steady as a rock where my faith in You as concerned. You and I both know I am incapable. I am also pretty incapable of faking it. My true colors will come out some where. I trust You but I hurt and I need Your comfort desperately.

My heart does overflow with gratitude for one thing in particular though. You prepared me for this with previous losses. You have taught me each time to bring my burdens to You and to stop pleading for my way – to just let You choose – even when my heart drowns in the grief of Your choice. You have given me complete assurance that I am just where You want me. I know, absolutely know, that you chose this for Jim and I…that you chose Amanda…that you chose Ty…for us. I don’t have any doubts about that. That alone is a huge burden lifted because I know that I am in the middle of where You want me. If I have to be here, in this dark place suffering this, I HAVE to know that you planned it…planned it from the very beginning of my life. Prepared me for this…

I don’t understand Your purpose but I do know that You want me to choose to give you glory despite my suffering. I am trying trying trying. This ventricular hemorrhage…Lord what in the world do I do with this? Are You going to wow us all with a miracle of Your healing powers? Are You going to ask me to surrender Ty completely and then have the courage to face the grief and offer all my sacrifices of praise to you? If You ask this can I do it? I don’t think You are setting me up to fail You so I am hoping and trusting that You are allowing this in my life because You know where You are carrying me and You know that ultimately I will surrender to being carried. I don’t know that I am capable of this but it seems to me that You are allowing me the opportunity to trust You when the lights go out – for my best good. Help me to say thank you for this every day even though Lord I do NOT understand. I don’t. I am trying…but the tears won’t stop falling.

Underneath it all I still have this sense that you are about to do something beautiful for Jim and I and Tanner and Ty and probably many other people as well. Lord help me to help those who are angry at this suffering. I am not angry. We have been there done that on this subject and I don’t want to go back. I don’t want people to put their faith in You contingent on You healing and saving Ty. That may not be Your purpose for Him. How do I help others understand this? I want it to be Your purpose. I hope to stand in awe of what You are going to do…I know someday I will irregardless.

The Dr. told me to prepare to change my dreams. I need You to do that. No mommy wants to see her child suffer. If You ask Ty to suffer, You are asking me to suffer…again. But Lord, if that is in my son’s very best interest – beyond what I can see into the eternity of only what You see – help me submit to this. Teach me what I need to know to raise Him for Your purpose. Help Ty to love You with a love that surpasses even the love I have for You. More than anything in the whole world, I want my sons to grow up to be men that seek Your heart above all else. Do I have the faintest idea of how to really do this? I am such a failure how do I stand a chance? At the end of every day would you help me to have the courage to say “Do what You must to bring my boys hearts closest to You?” I say courage because this is what I asked You for in my own life and look what happened. I asked for mercy and compassion and You gave me suffering. I then realize that You answered my prayer. Would I have been brave enough to ask this had I known? Not likely. Right now though, train already left the station, everything is already way way way out of my control and I can’t stop this. It makes more sense than ever to me to say “Lord do what ever You are going to do to refine my character and the character of my husband and son’s.” You obviously aren’t going to let me off the hook here. I have tried and tried to evade another outcome like this. I didn’t do Snowflakes again – I didn’t want to face more loss. I didn’t want a high risk adoption because I couldn’t face the possibilities. I was matched with a beautiful precious healthy teenager – that was supposed to spell healthy happy baby. It didn’t. You have made Your point and I love You for that. This is killing me inside but You have made it so so so so clear that you CHOSE this for me.

Please encourage those around us, those reading my letter to You, please place it upon their hearts to pray for Jim and I to have courage and to love You every day even more BECAUSE of this and not in spite of it.

There are probably few that followed this long prayer of my heart. That’s okay – it was meant for us anyhow. I am only letting them in it so they know where I am really at because there are hundreds praying for us. Lord that alone is amazing to us. Did You call them to this? I wonder why. I wonder what You want all of us to know about You. No matter what happens, help Jim and I to always always be found faithful to You. Even when we are crying all the way down the road…

I heard this song to today and I knew it was what You were speaking to my heart:

Mark Schultz
When the Mountains Tremble
Songs and Cinema

“Faith is coming to the edge of all you know and trusting God will give you something to stand on or you will be taught to fly.”

You stand on the edge

You followed the call

No turning back you are risking it all

He whispers your name

In a moment of truth

The rocks fall around you

The grounds starts to move

You step out in faith

It’s all that you know

You jump into darkness and hold onto hope

When the mountains fall

When the rivers rise

Security crumbles before Your eyes

The on thing you know

In faith you’ll find

Something to stand on or you will be taught to fly.

So dream your dreams

And live your life

Knowing there’s more than to merely survive

Don’t give up

Don’t give in

Fight through the rain and lean into the wind

Til you come to the edge of all that you know
Run right through the dark knowing your not alone

When you walk through the fire

It will not consume you

The the water may rise

It won’t overtake you

Though the mountains will fall

Oh still I am with you

I’ve called you by name

And I will not leave you

I’m learning to trust you

I’m learning to fly

I’m learning to trust you

I’m learning to fly

I love you and I am going to choose to thank you right now for this…someday I will know why. For now though…teach me to fly.

Your daughter who is proud to belong to You – Doni

Jan 29th - Day 12

Yes, I know, it is 1:00 AM and I am just now starting this. I have been lectured and lectured about this late night business but so far I just haven’t managed to get this done any earlier. Some days I have been tempted to go to bed and catch you up later but then I start hearing that some of you were hitting refresh throughout the night waiting for me!!!! I feel so humbled by this. I realize though that this isn’t about me. It is about all of us. Many people have fallen in love with our little Ty and need to know how he is doing each day. I was giggling with Cheri (birth grandma) tonight and said this update has escalated to the web equivalent of reality television. I would prefer a whole lot less drama though personally!

Ty’s Day

I felt much better today than yesterday. I was also more of a coward today. I went in to see Ty when he was doing good and I made sure I left when he was doing good. I couldn’t bare to watch the things that I watched yesterday. I felt a bit of post traumatic stress coming on actually. If the nurse was about to suction his tummy or lungs, I instantly felt sick and didn’t want to watch. Thankfully, his tummy was apparently doing better and they started formula again (this could be a process of starts and stops so hang on for the ride on this one). The secretions from his lungs didn’t have nearly as much blood today than yesterday so that was a positive sign too. He did have his fourth blood transfusion today but this did not surprise me with all the blood tests they did yesterday (they don’t have much to spare). Tests are not in yet in regards to his infection so we are still waiting on that. He did get put on antibiotics in the meantime though so hopefully we are getting ahead of it even before we know what it is. His sugars are also down due to intervention. One more thing back under control is good at this point.

He seemed to be much more alert today too. He was opening his eyes and looking at me when I was talking to him and waving his arms and feet around more than he had been. I asked his nurse to allow me to get his hand and feet prints today (I’ll post them tomorrow – they are precious) and I had to keep moving his hand away from his mouth. Figures he would decide to put his fingers in his mouth right after we stamped them black. Little turkey! I thought he looked pretty good overall today.

As to the bigger question, “How is he really doing?”…I just don’t know how to answer that. The ventricular hemorrhage issue is a biggy. That is not a question that will be answered timely – maybe not even for years. I have talked to different Dr.s and nurses and will be talking to a neurologist soon. Everyone’s opinion is slightly different and I feel pretty confused. I am not sure if we are looking at a 2/3 or a 3/3 or a possible 3 /4. I will know how he “rated” more definitely after I speak to the neurologist. Everyday I am having to give this right back over to the Lord though. There is absolutely nothing I can do to stop this or change this. I am not going to get the answers I want when I want them (which is now) and I am trying so hard to make myself take each day as it comes and not borrow troubles of tomorrow for today. Quite honestly, my shoulders are not big enough for that right now.

For those of you I am interacting with personally (telephone and in person which is mostly familyJ) – I have a favor to ask. I know you want to know everything I know and I am trying to tell you all I can think of. Please don’t ask me how Ty is doing right now. Instead, read his updates or maybe ask me how his day was. My reason? I don’t really know how to answer you. There is never a clear answer. Someday’s things look good but all these underlying issues are very confusing and I don’t know what to say about them other than what I have said already. In a few days or weeks, when I feel capable of holding up my end of the conversation without an emotional outburst, I will try to answer your questions but for now the questions force me to think into my little boy’s future into all the big questions that are scary for a mama and emotionally I just can’t do it at the moment. Can you forgive me for this? (I am not saying I don’t want to talk about Ty – I definitely do – I just don’t want to theorize through questions that don’t have answers because it is too heavy for me right now).

Prayer Service
This afternoon my sister in law Brooke sent out a note to many asking for prayer at 7:15 PM this evening. For all of you that participated in that either at GFF or at home, from the bottom of our hearts, thank you! Tears streamed down my face reading Brooke’s note. Your love has amazed us.

A note about Brooke: This situation has been especially hard on Brooke. Brooke has a chromosomal disorder that can cause her to miscarry 50 to 75% of all babies she carries. So far, she has miscarried 3. Two of these babies she lost in the last year. Brooke is pregnant a 5th time now and is right in the middle of “crisis” time. She is 7.5 weeks and this is the point she has not been able to get past with prior pregnancies (exception – Noah). Needless to say, Ty’s early birth filled her with grief and fear. She is a mom scared out of her mind for her little one too and all of us sisters are wearing emotionally thin after loosing so many babies. (Doni – 10, Brooke – 3, Jodi – 1 = total 14 babies in heaven). Please be lifting Brooke and Daniel up in your prayers as well as we nervously await her first ultrasound.

Thank You’s

· Diana Besset – I love banana bread! Thank you thank you thank you! Can’t wait for park day to get reinstituted.

· Uncle Dave and Aunt Beck – the seal is perfect. Just what he needs for support between his little legs when he sleeps.

· Meredith Grey – I just love you. I haven’t written you because I have too much too say and not time to write it. When Ty is off “groundation” J I need to just take you to the hospital with me. (Obviously I wasn’t sleepingJ).

· Kim Conger (HP) – Thank you for wrapping up your love in a little red bearJ.

· Ty’s Secret Friend – So you have reappearedJ. I hope you are following this web site so that I can finally thank you (as I never got to for Tanner). First, every gift you ever sent for Tanner was cherished. You wanted to make my pregnancy special after all we went through to get that little guy – and you did. The blanket is the absolute best and you don’t know how much that gas card will help. Thank you so much for your love for both of our boys and us.

· Darin and Jodi (well probably just JodiJ) - Thanks for the spaghetti!

· To all of you who took up a collection for gas money for us tonight – Jim and I just can’t believe your outpouring of generosity. Thank you! (Tom Chambers – rumor has it you orchestrated this. Why am I not surprised?J! You are such a softy! Did you know that Tanner now thinks every car in his room came from “Tom”?)

· My Heidi Jo – keep em’ coming! I am waiting expectantly for your inputJ sister of my heart.

I am not going to write my Ty journal tonight. I have too much to say and it is 1:35 AM. You have realized by now that once I get started I can’t reign myself back in so I have to draw boundaries tonight and not go there.

I did have something else that I wanted to share with you (only if you have the time to read it). Last year, right before loosing my last set of twins, circumstances motivated me to write an article on the topic of faith. Little did I know what today would bring when I wrote it. My plan was to begin a newsletter under Grace Abounds Ministry. It was to be a discipleship newsletter for women. I wrote the first one but then logistical issues came up and I never did anything with it so it has been just waiting. I did put a link to “Grace Abounds” on my site and my intention is to post these newsletters there but it may be awhile before that becomes a reality in light of our current circumstances.

While what I wrote is over a year old, I found it interesting to look back and see that even then God was preparing me for higher places of faith to climb too. What I believed then, I believe now and am clinging to it all the tighter.

+++++++++++++++++++++++++++++++++++++++++++

Taken from the first “issue” of Grace Abounds – never printed. Written January 2003

Along the Way

“NO! This isn’t happening again! Lord you wouldn’t ask this of me a second time! You wouldn’t…right?”

It was September 2002 and for the second time in four months I knew I had to begin saying goodbye to three more of my precious children. Didn’t the Lord know that I couldn’t go through this twice? Didn’t I pray hard enough? Didn’t I ask for all the right things? Weren’t so many godly men and women pleading on my behalf for these children? Wasn’t suffering through the agony of infertility for 7 years surely enough to teach me whatever it was I needed to learn? Wasn’t it a slap in the face to carry the burden of infertility and then have my babies taken from my womb? Hadn’t I explained very clearly that I could face many things but infertility and repeated miscarriage was not on the list of burdens I could bear?

You have been there haven’t you? Maybe it wasn’t a miscarriage or the loss of a child, but you have seen your dreams go up in smoke. You’ve had that moment when time stood still and it took concentrated effort to breath. You’ve walked right up to the edge believing God would never allow…and then He did. You have felt the overwhelming sense of abandonment and wondered how He could betray you. If you haven’t had this experience, hold on girls…your story isn’t over.

“Thank you for sharing THAT piece of good news” some of you may be saying. I don’t write this to discourage you. My goal is to encourage. I don’t have all the answers but I know the One who does. I am excited to share with you some of the things that I have learned along the way and am continually learning. Don’t worry too much…the good news is still to come!

I don’t know why God has taken home eight of my babies that I prayed desperately for but I do know that He has been teaching me a lot about faith and, quite honestly, …my lack thereof. By nature, I tend to be a fearful person. If there is something to worry about I am “right on that”. If there isn’t, I will invent something if need be. (Don’t ask me how many times I have sobbed myself silly on the freeway after dreaming up all the terrible things that could happen in life). For heaven’s sake, if it isn’t raining today it will tomorrow so I might as well start figuring out what I will do about tomorrow’s storm today. (Silly isn’t it?). I have learned to laugh at myself and I have coined this behavior of mine “black cloud syndrome”. One of my favorite movies is “Joe Versus the Volcano.” In this movie, Joe (Tom Hanks), a severe hypochondriac, believes himself to be dying. Every blessing along life’s way is shadowed by the ever-present fear of the problems on the horizon. I see myself in that movie and I laugh. Well…sometimes I laugh. Other times I cry. It gets very tiring carrying fear.

There are several topics that come to mind in light of the questions above. Questions related to fear, faith, the betrayal barrier, God’s will versus God’s plan, God’s sovereignty…I could go on and on. For this article though, I am going to concentrate on faith.

What exactly is faith anyhow? I have been asking that question a long time. With even the faith of a tiny little mustard seed I could move mountains. That is what the bible says doesn’t it? If I could just muster up enough faith, my problems would be solved. Loved ones wouldn’t be sick, spouses wouldn’t leave, bills would be paid, children wouldn’t run from the Lord, babies wouldn’t die…right? What a lot of pressure that is! What happens when all the above does happen? Did we pray wrong? Did we not believe that God could really do it? Was our faith just not quite up to par?

Ladies – we have been deceived. Good ole Satan doesn’t need new tricks when the old work just fine. He loves it when we doubt our Daddy (that is daddy with a capital D). He wants us to believe “God lied”. I think he laughs when we are convinced that we have been abandoned and betrayed.

What really is the truth though? How often have I heard “pray in faith believing”? “Believing what?” I want to shout. “Would someone please tell me what I am supposed to have faith in?” I scream in frustration. Should I have faith that God planted the desire in my heart for children so He will be faithful to fulfill it?

I believe the answer to that question is yes – IF God really did plant that desire in my heart. There is another possibility though. Maybe my desire is just that – MY desire. Did God promise me that I would have a home full of bouncing babies? He did promise Abraham and He was faithful to fulfill that promise. He is ALWAYS faithful to fulfill His promises. Did He promise ME babies though? The answer is no – He did not. I cannot sum up my journey down the road of faith in one article but I do want to share one thing I have learned that has been very prevalent this past year.

God wants me to have faith in what HE wants to do – not in what I want Him to do.

As mere humans, I think we love to misinterpret verses pertaining to faith. For a brief moment it may give us a sense of control. We are foolishly thinking that there is something we can do to actually bend God’s will to ours. That is not faith. That is treating God like a genie in a bottle. I don’t expect I will ever really understand why He asked me to surrender my children. I am not sure that this side of heaven there could ever be an answer that would truly satisfy my mother’s heart. I do know this though. Every day I trust Him a little bit more. I love Him a little bit more and I am a little bit less afraid. “How can this be?” you may ask. My answer is simple. I am learning to trust His heart. There comes a point in each of our lives where we have to stop and say “This is the moment. I either trust Him or I don’t. He is either telling me the truth that His plan will work for good or He is lying. There can’t be any in between.” After 25 years (on June 29th) of knowing Him personally, I know beyond a shadow of a doubt that He loves me and is faithful.

After the year I have had I would have thought that I would be in panic mode right now. As I am writing this I am a week away from transferring Tanner’s last two genetic siblings. A year ago the mere thought had me in tears. I don’t know if God will choose life for them. I don’t know if the desire for babies is one planted by Him or by me. I have survived what I believed I could not survive though. If I miscarry yet a third time in the next couple of months I will certainly grieve and I will be deeply and profoundly sad but I will not be bitter and I will not loose faith. I look at Tanner and I say “Lord, if you would have answered my prayer and healed us of our infertility we would never have had this child. The story I was writing for me could never compare to the story you have written. Forgive my lack of faith.”

For those of you who are praying for our babies, I want to ask a favor of you. I don’t want you to focus your prayer on asking for them to be welcomed into our home in 9 or so months. I would rather you focus your prayer on asking the Lord to bring our hearts in alignment with what my Daddy God has already chosen. I will not ask Him to change His plan. If babies are not the desire of His heart for us, He will be faithful to comfort us. If He planted the desire He will see it fulfilled. I just need to rest in His embrace knowing that even if the underside of this tapestry looks a mess to me – the topside will leave me speechless.

If you are struggling along the road of faith and are asking some of the same questions in regards to circumstances in your own life, I want you to know that I will come along beside you and share more of what I have learned. You need only ask.

Forsaking All I Will Trust Him.

Along side you,

Doni Brinkman

* On February 17th, after the above article was written, Tanner’s last two siblings were ushered into the arms of Jesus. All that was written above has remained true.

Jan 30th, 2004 - Day 13

First the precious pictures I promised you from last night. I measured them on my screen so that they would be actual size when you view them. This may or may not work depending on your monitor settings but the tape measure should give you a better idea anyhow. (Heidi - will this work for making his booties?) His hands and feet actually look huge for his body size if you can believe that!

I thought I was getting to this early tonight and now see it is already 10:00 PM. Last night I was so tired that when I had to get up to use the restroom, I was a bit clumsy on my feet. I tripped over Tanner’s stool in the bathroom hit my head against the counter and then the toilet landing in a heap on the tile. I have a scratch now by my eye that is still stinging all these hours later. Don’t want to repeat another episode of that tonightJ! (And by the way, Jim slept through the entire thing – even when I stood beside the bed telling him I was bleeding…shhheeeesh!!) He told me this morning that now is just not a good time for people to think that he is beating meJ!

Ty’s Day

Some day’s this question feels harder than ever to answer. It was one of those day’s were several things went wrong but by the end of the day, he still looked no worse for the wear. This morning they decided to go forward with extubating him. I told them that I didn’t think he was ready and were they sure sure sure they wanted to do this. They decided they needed to try it. My mommy instincts were working well. He was on CPAP (Continuous Positive Air Pressure) for all of 45 minutes before he was reintubated. He wasn’t ready.

The feedings were stopped…again. Not ready. There is still old blood that they keep suctioning out of the lungs too. I wait with baited breath every time they suction anything! I even start to feel like I am gagging too! (It is absolutely terrible to watch him gagg!) I am too psychosomatic to watch some of this. I have had a cough for weeks and each time his isolette opens I am so paranoid about coughing that I, naturally, start coughing. Please pray this will go away!!!! I am washing my hands like crazy and obviously not coughing on him but still it makes me ultra paranoid. (The nurses have no fear of me being contagious at this stage though…just the lingering thing).

And the worst news of the day…the neurologist determined that Ty has a level 2 bleed on one side of his brain and a level 4 on the other. Folks this is not good news by any standard and I hardly know what to do with it. I take that back…I absolutely don’t know what to do with that information. At first I wanted to talk to the neurologist myself but then I changed my mind. I am not ready. What is he going to say that will help me? I suspect he will tell us that this is not a good sign and that Ty will most likely be impacted by this as he grows. No one can say in what form. Deafness? Speech? Developmental delays? Motor skills? Cerebral Palsy? Blindness?????? I just don’t know. I don’t know what all the possibilities are either but I don’t know if I want to know right now. It won’t change anything so what is the point of knowing. I am assuming that the problems that may come will be based on what areas of the brain the swelling affects. As I understand it, (and I could be wrong), the blood is not pooling anywhere right now but has caused swelling that is or is going to ultimately press on brain tissue thus an indication of potential future problems. If the blood pools (which would make things even worse exponentially I am sure), they can attempt to release it. This decision has not been made at this point because we aren’t “there” yet. He will get another head ultrasound next week to watch the progress of this. I will be hoping with all my heart that there will be no progression. We can only wait…

Here is the good news. I barely even flinched when I got this news. A complete calmness swept over me. This was what I feared hearing and I took it in incredibly well under the circumstances. This tells me something. You are praying for me and God is giving me a peace that passes all understanding because believe me, having any kind of peace about this AT ALL goes way beyond my comprehension. Am I scared? Very. Do I know Ty is safe in the Master’s hand though and so am I? Yep. I guess I am just deciding that there is where this whole thing has to stay. God knows I am helpless and He is keeping me that way. There is nothing I can do physically for my son to prevent or change this. I know though that there is incredible love springing up in God’s heart for Ty and for us and that this overflowing of great love appears in a form that I can’t recognize today. I know some days I will struggle with this. I am not sure I could think of something worse (especially for my personality) than to have this kind of “threat” hanging over our head for an indefinite period of time. How do you live like that with that kind of fear? I think that is the point though don’t you? God doesn’t want me to live in fear and He is teaching me to live above it even when I don’t understand.

I know so many of you were praying for Ty last night – maybe waiting for a miracle today. I honestly think a miracle did come – in my heart. I did NOT want to hear the words level four!!! I really am okay though tonight and so is Jim. Besides that, the Lord brought something beautiful to me tonight to brighten my day considerably – her name is Amanda…

Amanda

This evening the phone rang. When I picked it up I heard Amanda’s cheerful voice. She said, “Hi Doni. I just wanted to let you know you have a baby!”

This afternoon at about 4:00 PM, Amanda relinquished Ty permanently placing him into our home to be his mommy and daddy. We knew this was going to happen but were also very excited when it was made official today. I am so glad that she was the one to call me. She gave me the most precious cherished gift any person could give another and I was so thankful to hear her voice. I know so many of you love Amanda and want to know how she is with this tonight. Again, I can’t speak for Amanda on this. All I can say is that she is one of the bravest young woman I have ever had the privilege of knowing and she seems to be doing really good, even though I know this was incredibly hard for her. Please keep Amanda in your prayers too as you are praying for Ty.

Your help?

· Anyone know anything about pulmonary hemorrhages? Apparently Ty had one early on and is still having old blood appear in his lungs. I haven’t found adequate information on this? Do I even want to know?

· I was told today that if Ty does not get off the vent within the next two weeks or so, we will be asked to sign consent for steroid treatment. Why consent? They explained that the use of steroids for the lungs “could” be another factor later in development issues. It boils down to a choice of which is worse for Ty. How in the world do we make a decision like that? Hopefully we won’t have to. I would welcome your thoughts on this if you have experience with this.

Mama’s Ty Journal

Son,

Mommy is very sorry for the day you had. I know that every time that tube is taken out and put back in, it hurts you. Your vocal chords are swollen now and the Dr.s now have to give you medicine to help the swelling go down so that nothing is blocking your airway. It just never ends…

It is so hard to watch your suffering. Never before have I had to close my eyes at the sight of blood but I almost feel myself getting weak when the nurses are handling you and it looks painful. I am so miserable for you and if I could take all your pain on myself I would not hesitate a second to take it.

I think you are starting to recognize my voice. I have noticed that when I start talking to someone near your isolette you start to open your eyes as if you are looking for me. When you open your eyes it reminds me of a newborn puppy checking out the world for the first time. The experiences of the last 12 days have been the most traumatic of my life but also the most magnificent. I just sit in wonder watching you.

Today I kept trying to contain your feet within your cozy blanket. You are just like your brother. Every time I would wrap you up you would kick kick kick until you got those cute toes right back out. After the 3rd time in a row I gave up – you wonJ!

I look at you Ty and know in my heart that God is working something beautiful in you. Sometimes in looking at you I wonder if you will teach me more than I could ever dream of teaching you.

When the Dr.s wanted to extubate you today mommy’s heart sank. I did NOT want them to do it. I knew it would not be comfortable for you, I didn’t believe it would work, and I didn’t want to see you suffer. However, some things were explained to me that I had to consider. First, the longer you are on that ventilator the more susceptible you will be to lung damage. Second, the tube is making your vocal chords swell which will make it even harder for you to breathe. Third, intubation creates an environment that begs for infection. The Dr.s believe that if they keep giving you a chance to breathe on your own, eventually you will do it. No risk, no gain. You must learn to breathe without help for your very survival. So as much as it hurts me to watch this agonizing process, I do understand that they intend this for your ultimate good.

I was thinking about this driving to the hospital and realized that this serves as a good analogy in regards to our relationship with Christ. I don’t want to suffer. I don’t want to be uncomfortable. When I look through the eyes of the short sided, many things do not make any sense and I question the point. I just want the agony to come to a quick end. God, on the other hand, lovingly allows our suffering because he sees the end goal. I think God is extubating me right now too and I am wondering if I will breathe.

I love you baby boy!

Your mommy

Song of the day

You knew I couldn’t leave this out didn’t ya? I have so many driving hours now and that leaves a lot of time for music so I am inspired every day.

First the story behind the song (yes, there is always a story with me isn’t thereJ). In October of last year, Heidi and Seth came for a visit. They were here on the weekend that my twins were due to be born. I thought I would handle their due date better than I did. The tears felt endless. During this same week, Jodi also lost her baby.

I had bought an album that month called “Next Door Savior” and had been listening to it. There is an old hymn on the album that was redone by Zoe Group that really caught my attention. It completely grabbed me. I played it in the car for Jodi that week and we both cried our eyes out…but we needed it. Heidi and I sang this song acappella at church that very weekend. I didn’t think I would make it through the song but I did. You can bet this soft sweet hymn of old will be sung to my little Ty.

Be Still My Soul

Be still, my soul: the Lord is on thy side.
Bear patiently the cross of grief or pain.
Leave to thy God to order and provide;
In every change, He faithful will remain.
Be still, my soul: thy best, thy heavenly Friend
Through thorny ways leads to a joyful end.

Be still, my soul: thy God doth undertake
To guide the future, as He has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: the waves and winds still know
His voice Who ruled them while He dwelt below.

Be still, my soul: when dearest friends depart,
And all is darkened in the vale of tears,
Then shalt thou better know His love, His heart,
Who comes to soothe thy sorrow and thy fears.
Be still, my soul: thy Jesus can repay
From His own fullness all He takes away.

Be still, my soul: the hour is hastening on
When we shall be forever with the Lord.
When disappointment, grief and fear are gone,
Sorrow forgot, love’s purest joys restored.
Be still, my soul: when change and tears are past
All safe and blessèd we shall meet at last.

Until tomorrow my sweet friends…

Jan 31st, 2004 - Day 14

10:00 PM

Ty’s Day

Ty had a good day. Good day is defined right now as: all things stayed the same and nothing else brokeJ! I thought his sats where hanging out kind of low often but no one but me seemed concerned. I also learned today that if his sats (sats = oxygen in his blood) stay too high for too long (97 – 100ish) damage can occur to the retina (eyes). Great! One more new thing to worry about. Somedays I want to walk in there and say “Don’t tell me a thing today! I am just going to love my baby and if you know anything I don’t please keep it to yourself!” Funny coming from a control freak huh? I think control freaks only like to pamper this behavior if we can at least maintain the illusion that we are somehow “doing something”. I think I am beyond that and know that I am 100% absolutely helpless. I had to fight depression with this today actually.

I can’t write long tonight because my husband wants me to spend some time with him when Tanner goes to beddy bye. He (Tanner) is currently tying ropes around his stuffed animals and dragging them around the houseJ. NICU nurses were telling me today how few marriages survive these experiences. Without the Lord, I can totally see why. Jim and I are doing well through this so far. I think because we are not “new” to the grief process, we are a little farther down the road on how to work through this together but still, it would be near impossible to suffer from more stress as a couple. Thank you for praying for our family in this.

How You Can Pray

· Ty’s 3rd head ultrasound is on Tuesday (the 3rd). I am pretty stressed about this and am trying to not let myself think about it. I am going to pray that a miracle happens and that the grade 2 and 4 have already started reabsorbing. If God chooses not to do that, please pray that Jim and I will be strong and just trust what God is doing.

· I am feeling emotionally and physically worn out. Please pray for strength for me. There are days that I have said “Lord I know people are praying for me today because I can feel you holding me through this.” Thank you.

· Jim is having a lot of pain in his shoulder. I don’t know what specifically triggered it but the stress of all this is certainly making this worse. Please pray for him.

Mama’s Ty Journal

Hi little one,

Today mommy was so tired I began to fall asleep in the chair near your bed. I saw the nurses giggling at me. Trying to be all places at once can really wear a person out. I look at you through the glass and feel like I am staring into a fish tank. You feel so close yet still out of reach. I can reach in and touch you but because I know that you have no immune system and have already been sick, I get afraid to touch you too much. I am washing my hands like crazy yet I never feel “clean” enough. If I even touch my hair, I have to go wash them again. It’s a wonder I haven’t washed the skin off yet. Tomorrow mommy gets to give you a bath! That will be fun! Doubt you will get real clean though because I can’t stand to rub anything on your little fragile skin right now.

I thought you had a mommy preference today. When I would put my hands on you and “contain” you, you seemed to do better. If nurses started talking though or touching you, you would begin to desat. So fragile still. I wonder if you are starting to know the difference between your mommy and all others. I would like to think so. That makes me feel like I am doing a little something for you. Your brother is now laying across my hands making it very hard to type. I think he is trying to tell me it is “his turn” right now. So I am off to tuck Tanner in for the night. I love you honey.

Mommy

Feb 1st, 2004 - Day 15

Ty’s Day

My little one was about to drive mama out of her ever loving mind today! He decided to stop breathing….regularly. These are apnic episodes which are pretty common to these little preemies but today it just got down right excessive. This morning his vent setting were lower than I had seen them in awhile and he was doing great. By about 2:00 though he was looking really restless to me. I reached in and contained his little legs for awhile. He now was safe, secure, loved, cuddled, warm……slept so deep he stopped breathing! I saw him stop breathing before the desat even started. He ended up getting bagged twice today for this. (They usually try not to bag if he will bring himself right back up but he had trouble recovering on his own today).

Jim and I were going to give him a bath today but this got put on hold for good reason. There was pandemonium in the NICU. The little boy in the isolette next to Ty’s took a nose dive today. I am not sure exactly what happened but he had a lot of people around him for a long time, his mommy got called from a city a couple of hours away, a pastor came in to pray for him, and he was moved into a critical isolation unit. This broke my heart! This little guy was also a 25 weeker (I think) only a few days younger than Ty. Please pray for Ty’s little friend too and his family.

Apparently, Ty didn’t like all the attention being drawn away so he continued to have apnic episodes throughout the afternoon. The nurses decided to let me hold him anyhow as they figured they would bag him on my chest if they needed too. I was less than confident about this but they figured he would actually do better while sleeping on mommy. This was true the first hour. He loved it! He was so cozy and warm and happy (and so was mommy!). During that hour, he was more stable than I had seen him all day. His levels stayed just exactly where they needed to be and he hardly yo-yoed at all. Finally, though he just got to comfortable and stopped breathing again. He recovered pretty good that time though. Jim and I went and got dinner and then went back to the hospital around 7:00. He was up to his antics again. I finally just couldn’t watch it anymore and asked Jim to take me home after he was stable again. By the way, the nurses don’t generally panic about this too much because they see it a lot but today was far worse for these episodes than I have seen before so it made me completely miserable.

They are going to do blood work in the morning to see if by chance he is getting another infection (sick) again. Sometimes this will cause higher than normal apnic episodes. I would like to think it was one of two things. (1) They were suctioning a lot of mucas out of his lungs today – maybe this contributed to more breathing difficulties? (2) They dc’d (discontinued) his caffeine today and I don’t think he was ready for that. They use caffeine as a respiratory stimulant like you would coffee for an asthmatic (I remember this as a child – it worked pretty good actually).

His billy reuben was up to 6 so he is still under lights today (this isn’t too bad) and they will check his thyroid levels again tomorrow. Please pray that he will stop this apnea stuff! At one point throughout the day I said to Jim “I can’t believe I am being so calm about my child not breathing!” Terrible thing to get used to! I feel like such a coward because at this moment I don’t even want to call and check on him. I know if he started this up again I won’t be able to sleep and there is nothing I can do. I have a feeling the theme of “helplessness” is going to go on and on for months isn’t it? So many of you reading this have been there and you well know this far better than I do. I HATE IT!!!!

Prayer Requests

Ty’s head ultrasound Tue. Same request as yesterday
Brooke’s ultrasound tomorrow
My sanity!
Thank You’s
Alma Uribe – You just don’t know when to quit do you??JJJ “Your baby” loves his angel!
Amanda Brennan – For the shoe box! Got it! And your right…what was I thinking???? That DID give me a good giggle this morning.
Today at church I saw the gas can that Tom made sitting in the lobby. Thank you all so much for that. We feel so blessed and don’t know how to express our appreciation to everyone on the level that we feel it.
I am feeling so guilty for not responding to the 200 emails sitting in my inbox! (I am also feeling guilty for not cleaning my house, doing my laundry, and not balancing my checkbook and budget….I’ll stop with that or this guilt thing will go on for a page). First, and most importantly, know that I have read every single one of them and I make time to read them everyday. I truly intend to respond to these emails it is just going to take me a little while to catch up. They have been so meaningful to my heart though. You are not overwhelming me by sending them. I can’t tell you how much I appreciate these notes of encouragement. They truly make a big difference in my day. They also are this constant reminder that you are continuing to pray for Ty and for us and that is more important to me right now than anything else. I am keeping all of these emails so that I can make a scrapbook out of them later. Today I had an email from an HP friend that heard a prayer request for Ty at her home church (and she had already been praying as she knew about Ty through HP) and ended up tracking down my Aunt who submitted the request and attends her church. Isn’t that crazy? I am guessing she met Karen Cooper (Aunt) at High Desert in Hesperia, CA or possibly Sheryl Mercer (cousin)??? Haven’t figured that out yet. I am sure word will travel back by tomorrow thoughJ.

Tanner Update

Today Grammy Sweetie watched Tanner for us. Apparently she didn’t do things fast enough for him so when he wanted to go home from church he said “Sweetie NOW!” Aaarrrgghhh! Daddy and Mommy do not permit Tanner to run our household and we thought we put a stop to that one in a hurry last week. Guess he just decided he had a better chance of pulling this off with his grammy. He was right. She kept telling me over and over on the phone “He was just teasing!” Sure mom.

Mama’s Ty Journal

Ty,

Mommy had one hour of absolute joy today! I got to hold your little body so close to mine and we snuggled and got so comfy we both fell asleep. Little babies in the NICU need lots and lots of bonding time with their mommies. Your developmental specialist has assigned you 1 hour every other day of “Kangarooing” with mommy. This is where mommy puts on a hospital gown (or button down shirt) and places your little body right on my chest. Then we put warm blankets on you and snuggle you up. Auntie Brooke bought you an outfit off a micro preemie website and the hat and sockies fit you perfectly. They are ridiculously little! You wore these while we snuggled. This is the best way to hold you for now because it keeps you so warm. It is also a very intimate and bonding kind of hold reserved only for mommy and I love that. Well….maybe once in awhile I will let your daddy hold you “kangaroo” but I doubt I will want to share this precious time much – not even with your dadJ. All your other family members will, at some point, get to hold you in their arms (not Kangaroo) but we have to be very careful to not get you sick right now as your little body can’t fight off infection on its own yet. You seemed so contented and peaceful while I held you. I am hoping that as you get more and more stable, I can hold you this way every day for a couple of hours. We’ll take our afternoon naps together! Believe me, I am in desperate need of an afternoon nap right now.

Mommy’s heart hurt so badly for your little friend, baby D. tonight. I never even asked what happened though because mommy is having a very hard time fighting fear and to be honest, I didn’t want to be paranoid about you having the same crisis D. did so I thought it would just be better to stay uninformed. I prayed for his family a lot though. I so hope he can pull through this. I felt so selfish being thankful that all the attention was on someone besides you. I bet other people are thinking the same thing about their own kids right now though after reading your story. Thankful that they were born full term and not premature. I don’t blame them one bit! I am now realizing how much we take that for granted and how thankful we should be for every baby born healthy and at full gestation.

Today I asked daddy to take pictures of us while I held you. When I looked at the pictures later all I could see was beautiful you. I asked your dad what in the world happened to the “us” part. I guess he just thinks you are much cuter right now because he left mommy out of every picture. That’s what happens when I give daddy the camera I guess. Sheeeeeessshhhh! I am going to have to be more specific next time! (Don’t worry baby…your daddy loves your mommy to pieces but was just a little distracted today by how incredibly beautiful you are!)

Let’s have a better day tomorrow okay? I don’t want to come in and find out that you are sick. I don’t want to hear that you were continuing to have apnea. I especially don’t want to hear that anything else “broke”. Okay?

This weekend your Great Aunt Becky mailed an article to me on ambiguous feelings towards premature birth. The article pointed out that mommy’s who have premature babies struggle with post traumatic stress and feelings of loss. They also are torn between wanting to rejoice in their new child but being so burdened by the trauma and fear. Family and friends have trouble to. Do they send congratulations cards or sympathy cards? Now that I am adjusting to this drastic turn of events, I am just now realizing “Hey! I have another son! I am now a mother of CHILDREN!” I want to rejoice in that. Even though I am so scared, I still want to treasure every day. When someone asks about you I want to brag my full head off (sorry mom – yes you did teach me better than that) just like I did (and still doJ) with your brother. There are so many things I want to tell people about you. I want to tell them that I love your hair and it always looks combed to perfection naturally. I want them to know that you look so cute when you are sucking on your tube and when you stretch and fan out your little toes. How you look absolutely adorable when you are laying on your tummy with your arms and legs scrunched underneath you and your little diapered bottom in the air. How your hiccups move your whole body and how you love to grip mommy’s fingers. I could go on and on.

While driving to see you today your daddy said “I think we should enjoy the blessing of Ty every day that God has allowed us to have him.” I agree with your dad. We didn’t think you would make it this far but you are over 2 weeks now and even though this has been very tragic in so many ways, it has also been filled with blessing. I have friends who didn’t get to spend anytime with their little babies before they went home to Jesus. I didn’t get to hold 10 of your siblings either or even know their sex. I am so thankful for each day and each minute that I have with you. Holding you today was one of the most precious experiences I have had in my whole life. I cuddled you promising myself that I would hold that memory in my heart for as long as I live…and I will.

Good night baby. - Mommy

Feb 2nd, 2004 - Day 16

For all of you waiting up late for this :) …aren’t you glad when I get it posted early so you can go to bed? :)

Ty’s Day

I think today I would classify Ty’s day as an okay one :) . He continued to have apnic episodes through the night and when they tested his blood this morning, found that his hematicrit was low. He was given his 5th blood transfusion early this morning. His nurse said this could have contributed to the apnea of the day before and he did seem to do much better today. The tests they sent off today to test for infection won’t come back for a couple of days. He did have a lot of yellowish secretions in his lungs today that they kept suctioning. Who knows what this is…? He isn’t acting septic though (sick) so it is anyone’s guess. I just can’t tell you how crazy this makes me. I just called the hospital to get another update and would you believe I actually get a sick and nervous stomach every time I call. They said that he did have one spell of bradycardia (heart and oxygen dropping) and had to bag him. Aaaagghhh! How long will this last????? Usually his heart doesn’t drop so I really hate hearing this.

On a nicer note, I did get to give Ty a bath today! Washed his hair with baby shampoo and even combed his hair. And guess what? He loved it! I used a big syringe filled with warm water to wet him down then little towlette’s with soap and scrubbed him all up (very softly of courseJ) and then rinsed him off using the syringe. He was so relaxed to. I thought he was going to get mighty upset over this but he surprised me and just reveled in it. He would just stretch and relax and just seemed to take it all in happy as could be. I think he just gets happy when mommy is loving on him don’t you?J

Praise

Daniel and Brooke hit the 8 week mark and got to see their newest little one’s heart beating today!!!! Yeah! All good so far!

Prayer

I am stressing over tomorrow’s head ultrasound. I don’t even want to think about it!

Prayer Journal

Lord,

I am trying so very hard to fight fear every day. Each day draws me into a closer bond with Ty making all thoughts of his future scarier as each day passes. I am not even sure how to pray for Ty at the moment. My heart is begging you for a miracle. I know you are capable but I don’t know what you would choose. I get so weary of this day to day stress. Please help me to surrender my little boy to you – especially on the days when I want to hold on to him with everything in me. Help me to have the courage to place my trust in You no matter how bleak things look some days. As much as I want to beg for an easier road, it seems that You have already made it obvious that you don’t want an easy road for us or for Ty. Lord you tell us to lay our petitions before You. I don’t know what to even ask right now. Would you please help my heart know what to ask You?

I love you - Doni

Feb 3rd, 2004 - Day 17

11:50 PM

Ty’s Day

It was with a very nervous stomach that I approached the hospital today. I had just dropped off Tanner with his grandma in Ahwatukee and he was NOT pleased that mommy was leaving again. Walking out the door while one of my son’s was crying his heart out for mommy while worrying so much for my other son…just a heavy morning.

I felt sick even asking the nurse about his head ultrasound results. She didn’t know and said she would check. In the meantime, I was able to hold and cuddle my boy against me and just pray. When Ty’s nurse came back and said “the bleed is resolving” tears just started streaming down my face. I had to hold my head back to keep from showering Ty’s little face with mommy’s tears. There are some moments in life that just draw you into such a state of worship. This was one of them. Inside my heart I was screaming THANK YOU to the Lord over and over.

What does “resolving” mean? My attempt to explain this will probably be a lousy one but I’ll do my best. The damage of the grade 4 bleed is not reversible (short of a miracle). Only time will tell how it will impact Ty’s future. HOWEVER, the fact that his little body is beginning to heal from this is a very good sign. Instead of the bleed growing worse or spreading, it is beginning to run its course towards healing. Ty will continue to get head ultrasounds for awhile to watch this. It is unlikely that the bleed would begin again at this point. That is the good news. What we need to pray for now though is that the ventricles will not swell and that all of the fluid is absorbed as well. It seems as though it is tough to tell right now how much “fluid” will remain to affect these fragile ventricles. If there does appear to be swelling, a shunt will be necessary. This swelling is what will contribute to future developmental and physical problems. Please pray with us that Ty’s hemorrhage will heal completely! NO SHUNT OR DRAINING! (*If I didn’t explain this well, and someone else can help clarify, please email me.) We are also of course praying that God will intervene and that Ty will have no lasting effects from this hemorrhage. Again though, I don’t know what God is choosing for Ty so at the end of the day we still need to submit to His plan. I can’t tell you how much my heart rejoiced at this piece of good news though. I think I have had the “shoe drop” soooooo many times over the last few years that I struggle with hope. I am always in a state of preparing for the worst possible scenario and more often than not, that has been necessary. When God allows these sunbeam moments I am so grateful. I usually don’t cry at good news – today I did. (His next head ultrasound will be on the 12th).

As for the rest of his day….things are going well. We still don’t have his blood cultures back but I don’t think he has an infection. He had a little trouble digesting his formula this afternoon but then did fine this evening. Up down up down up down……eventually his little body will be able to handle this. His vent settings were lowered again and he seems to be handling that pretty good. (Ventilator: 28% most of day, 15 intensity, 30 bpm, and 8 peep). Looks like he is preparing for CPAP but we’ll see. It is a slow process to wean him. I giggled today when one of his nurses changed his intensity by ONE. He dropped instantly as if to say “Whoaaaaaa there!!!! I noticed that!” She gave him a minute and he decided to live with the change. His nurse said “I am showing him whose boss now!”J. I hope he continues to obey! He still continues to have “Brady’s” a bit when his nurses handle him but not every time. When mommy held him today he was happy as could be. His sats stay so solid when he is cuddled up with me. It is obvious that he is very content being held. I wonder if he is going to be my little snuggler? I hope so! Like it or not, I doubt I’ll let that kid down his first year!J Poor Tanner crawled up in my lap today and pretended to be “Baby Ty”. I guess he is already feeling a bit slighted. He must think we have made up some fictitious character as we always talk about his little brother that he can’t see. My heart hurts through all this for Tanner too.

(And one more thing…Ty is not and has not been on a high speed ventilator. I asked about this today as this has come up in many emails. Apparently, his respiratory progress is pretty on target for a 25 weeker).

*** Correction: I have been spelling Billy Reuben wrong. It is Bili. Thanks Judy:)!

Prayer Support

Each day as I read my email I am amazed at how many are reading this page daily and praying for us. Truly overwhelming. I decided that it would be fun to start tracking where all this prayer support is coming from. My list is far from complete at the moment. Partly because most people don’t mention their home state. Partly because I have not been tracking it. This list just encompasses what is coming to mind at the moment but I would appreciate it if you would help me with this list. If you know of people praying in states/countries that I haven’t listed, will you email me? I just think this will be neat to share with Ty someday. Thanks for your help with this. My quick list appears in a table preceding today’s journal entry.

Thank You

· Heather Shaver and Kelly Ellison – It would be vain of me to think that your song on Sunday was “just for us” but I know in my heart that you were thinking of us when you decided to sing it. It was all I could do to hold it together when you sang it. You both did a beautiful job and your harmony was great. Thank you for loving us and for holding us up and carrying us to Jesus.

· Ike and Pat Belt – Tanner loves his cars and was playing with them this morning. Thank you!

Prayer Journal

Lord,

My heart is brimming over with gratitude today. I try so hard to prepare myself to accept Your will but sometimes I just feel like I am begging and pleading with you for a day of grace. Today You gave that and I felt oh so needy of it. This morning in the shower I felt schizophrenic. First asking for a miracle, then asking for Your will, then a miracle….round and round I went. Either way I needed a miracle I guess. Either a miracle for Ty or a miracle for me.

If I could have run to the nearest mountain top and shouted my praise to You with tears streaming down my face, I think I would have. Instead, I snuggled Ty even closer and just washed him with my tears.

I am so sorry that these euphoric moments of utter worship spill over when Your hand extends blessing. I wish that I could worship You with this same emotion when Your hand extends pain and suffering too. I am working on that. Right now though, when I worship through the pain it is mostly by choice of my will – not truly my emotion. There are moments though, that I feel You working in the quiet and the stillness and my worship is completely heartfelt and sincere. In those moments I am in awe of you even when I am drowning in my sorrow. I think these are the moments of the truest form of worship and while I am not brave enough to “request” more of them, I am grateful for them too. That is when I feel the safest. When my world has been set upside down and I still feel wrapped tightly in Your love. That has been a true privilege – to know You better because of this.

Day by day I realize that without You there would be no purpose. Everything that is, is for Your ultimate glory. All that you have called us to – for Your higher purpose. Not for our own self fulfillment but for the fulfillment of Your plans. Please help me to trust You when Your plans scare me to death.

I know that many reading this journal have trouble identifying with my conversations with You. It is scary to me to realize that these conversations between us may play a role in someone else’s understanding of You. I don’t want to fail You and by making these journals public, I take great risk in that. I could “what if” from now until eternity on this subject… I am just an imperfect person who is as capable of failure as the next person. Maybe more so as my knowledge of You results in a much higher level of personal accountability. Please help me to be humble and transparent. Not appear to have all the answers – we both know I don’t.

I belong to You first and even though I question my level of “exposure” sometimes, I feel in my heart that You are directing me to “go there”. Above all us – I am accountable to You. You planted this seed in my heart to testify for You and I hope to always be faithful to that. For as long as I live, I will not go out silently. Pieces fall where they may….

Overwhelmed by You and with You tonight – Doni

(Sorry baby Ty – no journal for you tonight. Sometimes what mommy needs to say to her Daddy God has to take precedence. You will come to appreciate this some day because my relationship with Him will make the biggest difference in the mommy I am to you and Tanner)

Feb 4th, 2004 - Day 18

(27 weeks 6 days)

Ty’s Day

Our little guy was ornery today. He continually had desat episodes all day. He was bagged 3 times that I know of. While I watched him, his saturation levels would fluctuate between about 77 and 100 never staying more than a moment in one place. This is so stressful to watch. Every time he was handled by his nurses he would desat. So so frustrating! Will I have nerves of steel by the end of all this or be a basket case? I think from outward appearance, it may look as though his desats roll off me like water off a ducks back. Not so. I carry it with me all day and all night. My worry must be rubbing off on some of you because I have had more than one email telling me that sometimes this page is opened with dread. Sorry!!!

Today they upped his formula to 4 cc’s every 3 hours. We are making progress in the digestion department anyway. (I am getting really distracted writing this because Jim is shooting off his paintball gun in our bedroom – noJ, of course there are not paintballs in it – apparently he is just getting it in prime condition and annoying the socks off of me in the processJ). ANYHOW…we’ll see how long this new feeding schedule lasts. I am not counting my chickens!

All other factors remained pretty consistent. The vent settings were changed off and on trying to find that perfect “spot” but Ty just wasn’t going to cooperate with anything today so his poor nurses basically just had to stand guard all day. It is so scary to me when I realize how often he needs life saving intervention. I know we are only 2 and a half weeks into this but every day seems so long and I just keep wondering when things will get better. In reality, they are getting better but these little steps are so slow when you are staring at him through a plastic window all the time.

Your Prayers

My heart is sure full on this subject. Each time I would write down updates for my State/Country table, more would come in. I just can’t believe that in a little over 2 weeks, Ty’s story has reached this far. It is just totally unbelievable to me. I kept calling my mom updating her on new states. She just laughed (was that at me or with me?). I appreciate all of you so much and feel so inadequate expressing it.

The subject of prayer was on my heart a lot today as I was contemplating the overwhelming numbers of people praying for Ty. I think I hold a different opinion on prayer than many so I think I am going to go out on a limb here and share it with you.

It occurred to me today that while God has indeed called upon the hearts of so many to pray for Ty, I am not sure Ty is really the point. In fact, I am almost positive he isn’t. Let me explain. To be frank, Ty is safe in God’s hands whether we pray or not.

I got an email from a precious woman today who told me that when her baby was in the NICU she had trouble with the subject of prayer because it made her wonder what happened to all the babies who weren’t prayed for. Hmmmmmm….. She makes a good point. So often we assume that we run the universe and God is our servant. We use prayer as “power” and believe that just the right words, just the right timing, just the right number of people, etc. will accomplish OUR purpose. Surely if thousands upon thousands are praying, God will work a miracle…we think. Is this an accurate assumption though? I don’t think so. I had many many people praying for my 10 babies – they still died. Did God hate me? No way! I knew in the depths of my heart that His love covered me as far as the east from the west. He simply said “No”. I don’t know why. I just know that my babies didn’t die because of anything I did or did not do and neither did Tanner live because of what I did or did not do.

Is what I am saying uncomfortable? Does it stir up a lot of questions for you? To many, it probably does.

Now let me be clear on this point, if God put it on all of our hearts to pray for a miracle because that is what He intends to do and wants us to join Him where He is already working – then yes – we are absolutely going to see a miracle (and boy am I hoping that). I don’t think it will be BECAUSE we prayed though. I think it will be because that is what God wanted to do and He was involving us in the beauty of His plan. God loves to involve us in what He does.

Then why pray you ask? A relationship with God is just that – a relationship! As we all well know, relationships don’t grow without work. How can one build a relationship without communication? Can’t happen. Why would it be any different with God? So to get to the point…I think maybe God chose to use Ty’s little life for YOU. When I look at how many people across the world have been called to pray, my heart tells me there is a reason beyond what we see. I can’t assume that I can “figure this out” – I can’t. I do know though that people who haven’t spoken to God in years starting opening the lines of communication back up. I know that people who have been bitter and angry at God are starting to think through this. I know that people who have never uttered a public prayer – did. I know that people who haven’t entered a church in many a year – are on their way. I guess it wasn’t difficult for me to come to this conclusion in light of this. God is drawing many to Himself through Ty’s life. Please don’t misunderstand. I definitely do believe that God is calling us to pray for Ty and I know that when God burdens our hearts to pray, it is for a beautiful purpose. I just don’t want us to miss out on some of the incredible beauty of this by assuming we already know God’s “point”. He may want to heal Ty completely. He may not. Either way though, He does want us to lift Ty up in prayer and He does want to become more intimately involved with each of us in the process.

Many emails I get are saying that Ty has become everyone’s baby. I think you are right on the mark with that. I think God planned it to be just that way. Am I saying that was/is Ty’s purpose? No – I would be speaking for God if I said that and who am I to know that? I am just making an observation and wondering out loud with you. If you have followed my train of thought at all, I hope by the end of this you are realizing how much God really does love you.

If I just made a hard issue even harder, I apologize. I bet it will be clear from your emails if I did and I’ll try again another night if I muddied the water. Some of these questions I have pondered for years and these are just little pieces of the conclusions I have come to in my own life. Tonight I just figured I couldn’t go wrong in believing that all the credit goes to Him for what He does and none of the credit goes to me. Like I said, I am probably going out on a limb with this one but it was just on my heart to say it…so I did.

Tanner Funny

Maybe this is just funny to me but I’ll share anyhow. Tonight at dinner, Tanner spilled his coke. I was a bit surprised when he immediately looked at me and said “What are you doing?”. How male is that?!!!!! (And yes he was serious!)

Mama’s Ty Journal

Hi baby! You were breaking my heart again. This up and down stuff makes me loco. I am so anxious for your little lungs to mature so we can get past this stage. It is terrible to watch. Some days I wonder if I am going to start ticking from stress! Do you know how hard it is for me to not reach over and adjust your oxygen myself? I also have been dying to push the “shut up” buttons on your monitors. (To all Ty’s nurses who may be reading this – I promise – I won’t!) I don’t know how your nurses deal with bells and whistles all day every day. It seriously can push a normally sane person right over the edge. If anyone buys you toys that make noise I am going to hide them until you have your own kids, then I’ll give them to youJ!

Because of all that I am writing to you and about you, I keep having people ask me to put all this together in a book someday. I am giggling about this. It brings back a memory of a decade ago…

Almost 10 years ago, right after your daddy and I got married, I attended a women’s seminar with your Grammy Sweetie. The speaker was wonderful and moved my heart to laugh with her and cry with her. I remember sitting in the pew thinking “Lord, someday I hope you will use me in this way. I believe You gave me a love for writing and speaking and I hope to use it for You.”

As the seminar went on though I began to realize something…something that changed my heart entirely. I realized that the woman speaking would not have had nearly the impact on my heart had she not survived great suffering. The reasons that I laughed and cried were because she was able to share her tremendous trials with us and still be faithful and full of joy.

Son, I am embarrassed to say it but when I walked out of the building I actually told God “Never mind”! True story – I really said that. I can see that moment plain as day, I know exactly where I was standing when I said it. I concluded that as much as I wanted to serve God I did not want to suffer. I checked book writing and public speaking off my list of things to do and went on my merry way. I am tempted to use the word “ironic” for this but I guess we know that this had nothing to do with irony. I don’t know if God will ultimately call me to either of these things but I have learned to look for where He is working so that I can try my best to join Him there. He has allowed your suffering for great purpose. I am sure part of God’s purpose is for you but more and more I am seeing purpose in your suffering for the sake of others too – including mommy. Your great grandpa used to say “Some people are so heavenly minded they are of no earthly good.” I think grandpa’s point was that those who have been “too” sheltered from the reality of pain, are not usually very useful. That’s my interpretation anyhow. I certainly hope that going through all of this will help your mommy to be both heavenly mind and of earthly good. Just sharing my heart with you tonight little guy…

Love mommy

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