Archive for August, 2011

Apnea Clinic

August 30, 2011

Today was Troy’s visit to the Apnea Clinic at Phoenix Children’s Hospital.  I thought I would post a picture of Troy in his apnea belt with the monitor because I figure most people haven’t seen one before.  If you look closely at the upper left picture you can see that the monitor records heart rate (high and low) and the respirations.   Troy’s monitor will alarm if he has as few as 60 heartbeats per minute or as many as 200.  If he stops breathing for 16 or more seconds, the monitor will record an event and it will alarm at 20 seconds.

The results were sort of a mixed bag today.  It was as I predicted but a little worse.   Good news was, the alarms on the 21st and 22nd WERE labeled false alarms.  They assumed a loose belt and I confirmed that I felt that is exactly what it was.  The loose belt wasn’t catching his shallow breaths.   The other thing I liked knowing was that they commented on every alarm I was aware of (including the first day alarms when the RT put it on wrong) and I felt they interpreted everything just as I had seen it.  The bad news was that the alarm on August 2nd, WAS in fact, absolutely real AND that he has had several more (I’ll call them) near misses.   In total,  they evaluated the report as “abnormal”.

The clinic nurse said that the event from the 2nd was a definite but that there were several others that she felt the Dr. was going to classify as real events as well even though they fell just short of the 20 second mark (therefore I was unaware of them).  Technically speaking, a “normal” baby may have periods where they stop breathing – even as much as 15 or 16 seconds BUT that is not common.  When a baby is having REAL apnea plus several of these lesser apnea events, it is cause for concern.    She agreed though that Troy was on the lesser end of the apnea scale (which I am well aware of post Ty and boy am I thankful for at least that).

She said that in total he has had over 100 recorded events.  Some of those events were tachycardia.  His heart rate was too high.  These we can discount because he was crying.  No biggie.  A few were the ones from the July 7th when the RT put the belt on incorrectly.  Then there were the ones from the morning of the 21st and 22nd.  All the rest though were those minor apnea events that just came shy of the 20 second mark.  For this reason, they have advised that he be on the monitor at all times unless he is awake or being held by someone who would know if he stopped breathing.    She said the EARLIEST he would come off the monitor would be October because he needs to reach 45 or 46 weeks gestational age first (he is 42 right now) AND he needs to be a full 2 months past any event.  He will be seen again in early October to see how things are going.

I love Phoenix Children’s Hospital.  When a child is admitted to one of their clinics, they get such great universal care.  Ty was admitted into the pulmonology clinic there as well so this is my second clinic experience.   When you see a clinic Dr., they concentrate on the area of specialty but they don’t stop there.  They discuss everything else as well and even send a nutritionist in with every visit.  Because of this, we had a good long talk about the continuing reflux and projectile vomit issues and they decided to take Troy off zantac and pull out the bigger guns of Prevacid which is a pro-inhibator.  They said to give it about a week but that the Prevacid should help to start slowing the vomiting down with very little side effects.  Hope it works.

He weighed 10 pounds 6 ounces today and was 20 inches long.  (Tanner was 9.11 and 22.25 at birth).  The Dr. said that preemies are notorious for looking really chubby because their weight increases ahead of their growth usually.   I am surprised that Troy is only 20 inches long.  For two weeks/two months old, that is pretty diminutive so far it seems.  He’ll catch up soon I am sure.

I also must let you know that his amazing cuteness became a hallway discussion because the last nurse to come in said that she had to see him because everyone in the office was discussing what a beautiful baby he is.  :)   You know what I think about that.  :)

So no that isn’t the news I wanted to hear but it is what I expected to hear.  My gut did tell me that the first incident was the real deal so I wasn’t surprised.  I am not happy to learn that he has come close to several more too BUT I AM glad that he obviously started breathing on his own because the alarm didn’t remind him nor did I so I can look on the bright side of that I guess.  I am so GRATEFUL that his pediatrician supported me in getting him a monitor!!!!!   We’ll never know what could have happened without it.   I feel even more concerned today than I have been knowing that technically speaking, he is continuing to have events but we have been through MUCH worse with Ty and all lived to tell about it so I am just trying to be thankful that we HAVE the monitor and leave it at that.

The nurse suggested that I contact the electric company and let them know I have a child back on medical equipment so that they prioritize us in case of an emergency and she also suggested I try to get insurance to agree to synergis (RSV shots).  That will be a toughy because he is borderline for qualifying but I HOPE HOPE HOPE we can push him through.  Will help me feel much better this winter.  I also wanted to add that they sent me home with a CPR kit that includes a little practice doll.  The protocals for infant CPR change all the time it seems.  The new standard is 30 compressions to two rescue breaths.  As of Dec 2010, they want you to start with compressions first because keeping the circulatory system going is the most important to keeping the brain alive.   The kit they gave me still starts with the rescue breaths but that is fine in Troy’s case because chances are, him not breathing would be the primary issue anyhow.  After Jim and I watch it, I want to pass it through the family because I think a 22 minute investment is wise for all of us.

One other thing I found interesting…the nurse said that from her 21 year experience, premature babies often go home after the NICU experience and don’t have their first apnea event until they are a month or more older.  This is exactly what happened with Troy.  No apnea in the NICU thus the reason they refused him a monitor.    It worked out in my case because of my relationship with Troy’s pediatrician but if I should ever adopt a premature infant again, I will INSIST upon a monitor until they are a couple of months old.  (And no, we are not planning on another adoption but one can never tell what will happen in life so if a baby fell in our laps…well who knows).

I am a little blog AWOL lately because this is my last week before I start school with the kids and I have a long list to accomplish.    This blog post is serving to set me even further behind so off to work I go.  Busy busy busy…

Troy – Aug 24th – 1 Mo

August 25, 2011

Look who is turning into a little butter ball?  :)   UH-MAZING too considering how much he vomits a day.  Seriously – the vomiting is making me CRAZY.  I am so tired of wearing it!  Good thing Jodi gave me extra burp clothes because I have to use huge ones and I go through one a feeding.  The oatmeal cereal isn’t helping him a bit in terms of keeping it down.  Hopefully though, it IS keeping him from aspirating it when he projectile vomits it.  A little curious about a possible lactose intolerance.  I THINK this is a reflux issue and not an allergy one but who knows.  I did notice him getting a rash on his face (mostly sides, eyebrows and into hairline) that I thought could have been an allergy but then it went away.  It resurfaces but I think I have narrowed down to his temper.  :)   Like, Ty, they turn themselves red (even their eyebrows) when they are crying.

His right eye is still gunky everyday too and I am starting to wonder now about a clogged tear duct.  I have rejected that idea because I thought it way too coincidental that he would have an icky eye issue that started at the same time as Tori and Jim (who had the same symptoms).  This has gone on for a few weeks now though and hasn’t spread to the other eye so I am getting suspicious a this point.

He is getting so many darling rolls that cleaning the spit up out of his neck rolls is becoming a challenge LOL.  He is, by far, the chunkiest baby I have had to date (and I have to admit to being a little excited about that – six month pictures are going to be great!)
AND….guess what he has done the last THRRREEEEE nights?  (Brooke don’t hate me!)  Slept SEVEN hours in a stretch.  Midnight to 7:00 AM (pretty much Jim’s normal schedule).  Now I don’t count this as sleeping through the night yet because mommy needs nine hours of sleep so until he sleeps a nine hour stretch, he doesn’t get the “sleeping through the night status” with me.  Tori and Ty both made it to 9 plus hours in their second month and he hit two months today (8/25) so it is reasonable to think that he just might be sleeping through the night before he hits three months just like his other two siblings.  Tanner was six months before he slept through the night but he was my first so I didn’t have the tricks of the trade down yet.  :)    I also think the cereal may be helping Troy in this department too.  He is now starting to take several 4 ounce bottles a day and then goes a little longer between feedings (three to four hours).

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Setting:  Me giving Tori a foot rub at bedtime

Me:  Don’t foot rubs feel so nice?

Tori:  Yep

Me:  They are so relaxing they can help you go to sleep.

Tori:  Or they can make you wake up.

So much for that idea.  She outwits me at every turn.

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Tori:  I got an Easter Egg!  (Goose egg)

 

 

Where is Pointer?

August 22, 2011

Where is Thumpkin where is Thumpkin?  Here I am.  Here I am.  How are you today sir?  Very well I thank you.  Run away.  Run away.  – Tori loving this one lately.

I intended to post the above picture the other day with the other set but I forgot it.  I especially wanted to include it to because Tori has been cracking me up with her expression when she points.  She makes that face every time.

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Tori:  Oh for goodness sake!  Are you putting milk in your tea?

(And yes I was.  My cousin Kelly mentioned a London Fog the other day and now I am hooked.  Earl Grey – Steamed Milk (or frothed) – and 2 T Vanilla Syrup)

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Ty:  Mommy!  Tori is saying that we can’t say a word that we CAN say.

Me:  What word Tori?

Tori:  (Deer in headlights)

Me:  Tell me what word you think you can’t say.

Tori:  Winnie the (whispers…)  Pooh.  We can’t say “pooh”.

Me:  Uh well Winnie is a pooh bear and they are very nice so that is a nice word.  You can say Winnie the Pooh.

Tori:  (Running down the hall)  YAY!!!!  We CAN say Winnie the Ppppppppooooooooohhhhhhh!!!!!

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Troy has nearly given me a heart attack the last two mornings.  All is okay.  Know that first.

Yesterday, Troy had a tough 6:00 AM feeding.  He ate but cried and cried and took about 1.5 hours to go back to sleep.   This happens sometimes and I think it is a reflux pain issue.  I got him back down somewhere around 8:00 AM.  The other kids were still asleep and I laid back down.  By about 8:30 AM his apnea alarm went off.  It was a two alarm.  I jumped out of bed and shook his belly a bit and the alarm stopped.  I saw him take a breath.    What especially freaked me out about this incident was that I had just been dreaming about pulling my brother Darin behind a boat and he was drowning and I was trying to get everyone to stop the boat because he couldn’t breathe.  I woke up from that and prayed for my children.  Jim and Tanner had left for early target shooting and having some of my birds out of the nest added to my post dream anxiety.  No sooner did I fall back to sleep that the alarm went off.

My bedroom is dark but even still, nothing stood out to me by Troy’s appearance.  I laid back down and watched the monitor.   It seemed to be reading accurately.   Was this a fluke like the one three weeks ago?   Within 10 minutes the alarm sounded again.  It was a 4 alarm this time.  I was scared to death.  When I shook his little belly, again I saw him breathe.   I was getting ready to call the Dr. when the loose lead alarm went off.   Breathed a sigh of relief.  Must be the monitor acting up.    Tanner had pulled the respiratory chord out by accident earlier in the day so I wondered if that had anything to do with it.  Maybe the chord was damaged.  I took off the apnea belt and inspected everything but nothing looked out of the ordinary.  I replaced the pads and leads just to make sure.

This morning, the same thing happened at 6:00 AM again.  It was an hour and half before I could get him to sleep once again.   And just like yesterday, his alarm went off at 8:30 AM.  It was at least a 4 alarm.  Moments later he had a seven alarm.  I broke away from him long enough to turn my bedroom light on and then sat with my hand on his belly tracking the monitor.  It was reading his breath movements the same as I was.   I called and left a message with the Dr. and stayed bedside watching his every breath wondering how long a person could keep this up.  Within about 15 minutes he alarmed again.  This time I about made myself sit on my hands.  I didn’t want to wake him this time.  I wanted to ignore the alarm and study his face, color, and chest.   I thought I detected slight chest movement and his color didn’t look any different.   He  alarmed two or three more times after that and I was finally convinced that he was breathing albeit very shallow.   He would continue to alarm until I would shake him (so I quit counting the alarms at that point) but when I would shake him he would take a deeper breath and the monitor would register it.    I am so glad that I made myself not intervene for long enough to truly assess the situation without panic dictating my actions.  I talked to the Dr. later in the day and he said that he thought all was fine if I could detect any chest movement at all.

Later when I checked the apnea belt again, I adjusted the pads a tiny bit for his larger size and noticed that it wasn’t as tight as I normally like.  Mid morning he had a bit of a crying jag and when I changed his diaper I again noticed the belt looser than my earlier adjustment.  My theory is that Troy’s temper causes his belt to expand so when he has gone back to sleep after crying through those morning feedings, he has loosened his belt too much to detect shallow breathing.  Tomorrow I will make sure it is tight before laying him back down to test my theory.

I feel like I will never get over my post traumatic stress from the sound of alarms.    I am so thankful for the monitor though.  Under the circumstances I would have a terrible time sleeping without it.   Having said that, because I have been through this before, I am not panicking as much as I would have otherwise.  When Ty would alarm, he would start losing color in his lips first and would go to dead weight and limp.  It was very obvious to me that he wasn’t breathing.  Because I haven’t experienced this with Troy, I have found myself at more peace about it.

I have an appointment with the Apnea Clinic and Phoenix Children’s Hospital next week so they can download the machine and see what they think.  I am eager to hear what the report says.   I think all is okay.   I really do.  Still…those alarms and the “what if’s” are a parents worst nightmare.    As much as I am enjoying his little stage, I must confess to being eager for him to get a bit older so we can get past this stage.  I never want to have to deal with apnea and a baby AGAIN!!!!

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I think he smiled this weekend while awake.  :)

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He loves to be kissed by mama and he seems to try to reciprocate it.  So cute.   My Grammy observed this and said “he is just wanting to eat”.    I refuse that explanation.  ;)    He LOVES mama’s million kisses a day (and Tori’s).

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His eyes have me baffled.  Troy’s birthfather has brown eyes and birthmother has hazel eyes (ironically they look VERY much like mine with green on the inside and brown on the outside).  I had Troy tagged for a brown eyed boy for sure.  However, his eyes keep reminding me of Tanner’s.  They have a distinct blue cast (more so than the newborn blue) and the inner portion is getting lighter.   Still too early to tell but I suspect he will move towards the lighter hazel side because they just don’t look like they are going to be a deep brown.  It’s so fun waiting and watching to see who he is going to be.  Next time I talk to S and K I will have to ask if they have much in the blue eyed genes in the family.

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And yes.  Still vomiting.  Mostly right after a feeding but sometimes not.  I go through so many burp clothes a day it is ridiculous.  I wish the cereal would help hold it down but so far that doesn’t seem to be the case.

That is all I know for today.

Did you know that Jim plays the guitar?  Well I should say “played”.  He hasn’t picked it up in years and currently it is underneath our bed.  I was inspired by a shot on Pinterest and wanted to put my spin on it.  The picture I saw of the guitar in grass but I thought (in this instance) I would prefer the wood of the guitar on wood (or was that just an excuse to shoot more on my new wood?).  I LOVE wood backdrop for babies.

Also inspired by the fact that my mother requested pictures of the top of Troy’s head for memories sake.

Tori Quote:

(Her explanation for why she was sitting Troy’s bouncer)

Tori:  I was trying to be small in there but it didn’t work.

Tanner: That is not true – your not supposed to be in there

Tori:  I WAS TRYING TO FIT ME IN THERE BUT IT DIDN’T WORK!

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Tori’s first short story:

You can get by to the fish so you cannot go under water because you can die. Write that down.

Sigh…ya that’s gonna need some work.

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Hello.  My name is Doni.  I am a PINTEREST addict.

(While I didn’t really “get” it a few months ago, I am a little obsessed now.  Darn it.  As if I have time.   Visual inspiration while feeding and snuggling baby is acceptable multi tasking though right now.  :)    Also have read some great books during night feeds.    For fantasy lovers, try To Darkness Fled trilogy by Jill Williamson or the Firebird Trilogy by Kathy Tyers.   Good stuff.

 

 

But We’re Girls

August 18, 2011

In an attempt to make my only daughter feel cherished in her role of “only girl”, I may have gone to far.   When we do makeup together, I say it is “girl time”.  When we take a bath it’s “girl time”.  When we go shopping “just for girls”.

Today when she sat with her cereal on the couch and I said “No way Jose!”  She said “but we are girls”!   After a few more Tori retorts of “but we are girls” it occurred to me that her interpretation of girl time is anything mommy can do, is okay for Tori to do as well BECAUSE we are girls.   I need to get more specific apparently.

So sometimes my plans come together and sometimes they don’t.  I tried to get shots of Troy in the lion hat yesterday and he wasn’t going to for it.  Tori wanted a few shots holding her brother so I changed my plan.  Maybe it was for the better.

Is it a little bit funny to you that my lion is eating an elephant?