Sunday, November 6, 2011

So, I Don't Do Such A Good Job of Growing Airways

Like I said before, Bailey had to have surgery on her airway at 5 months due to a narrowing in it. I want to take a minute and clarify that in my last post I commented that I was somewhat ignored about my concerns over Bailey's breathing.  I do feel that I wasn't listened to, but only after she went into respiratory distress and was admitted to the hospital in Meridian and kept for almost a whole week being treated for symptoms that weren't really there.  Bailey's peditrician, and her staff, including Aunt Kylie, always went out of their way to make sure Bailey was well taken care of. Bailey was initially treated for asthma and/or croup.  After being treated for that for so long, her peditrician, Kayti, did tell me that she thought her problems were going past what she was being treated for and we might need to look at other things.  Bailey went into respiratory distress before that options could be explored. But I just wanted to clarify that those who took care of Bailey on a weekly basis from birth did all they could do given what we knew to help Bailey.  They were, and still are, wonderful!!

Elissa had her sedated scope with Dr. Carron on Friday.

Here she is in recovery.

She won the hearts of all her nurses.  

Elissa was diagnosed with a condition called Laryngomalacia.  This is a very common condition found in infants, as Dr. Carron says he sees about 3 to 4 new cases a week.  What is means is the tissue and cartilage around the upper larynx collapses as she breathes and therefore, obstructs her airway.  Dr. Carron called the tissue "floppy" and in certain positions "flops" over her airway and closes it up.  Elissa realizes this has happened and repositions herself so it will "flop" off her airway.  Sound scary???  It does to me!

The information I read says that it presents within the first few weeks of birth, but might not be noticeable until the child gets a little bigger and starts moving around more.  I believe Elissa had it at birth because I asked in the NICU why she was making such a loud "quacking" noise when taking her bottle.  I was told she was just making the sound because she liked to eat. Then the pediatrician noticed it and said it was not normal.  From about 9 weeks until now (12 weeks) I have seen/heard a tremendous increase in her loudness. I also notice it when she is just lying still or taking a paci.  Of course, I always notice it when she is taking a bottle.  

Dr. Carron says that it only requires surgery in about 5-10% of babies.  He didn't see any reason why Elissa would need surgery.  He told us that she should outgrow it by 18 months, but it would get louder/worse before it got better.  

So, I didn't do such a good job of growing Elissa's airway either.  I guess what I will be thankful is that Bailey is just fine and although that was a terrible ordeal, she is doing just fine.  Her condition was not life something she would have to deal with forever and it was fixable.  For that, I am thankful.  Elissa's condition is dangerous, but it will fix itself.  She will grow out if it and grow into a happy, healthy child.  For that, I am thankful!

It really puts the whole deal into perspective when you pass the children's cancer wing in the hospital or when you see parents of babies with obvious, life-long problems. This, too, shall pass!  For that, I am thankful!

So, here is where Friday took a turn for the worse.  If you remember, Elissa had some apnea spells in the NICU.  To my knowledge, she didn't have one for at least 7 days prior to us coming home.  Apnea in newborns/infants is different than sleep apnea in adults.  Apnea like Elissa had in the NICU means that for some reason, she didn't breath for 10 seconds or longer and her stats dropped.  In the NICU, they called her apnea episodes "no-stim", meaning they did nothing to her and she started breathing and brought her stats up totally on her own with no intervention from outside sources.  I have been telling Sid that I felt like she was having breathing problems or maybe even apnea, but I never saw her not breathing.  What I would see, or hear, was her gasping for breathe and chocking and gagging after what appeared like she wasn't breathing.  

When they came to get me to come to the recovery room, her nurse, a sweet young man named Brent, said he was a little worried about her because she wasn't bouncing back from the anesthesia like they would like for her to.  But they wanted me to go ahead and try to get some juice in her.  They asked me to stop letting her suck and give her a chance to breathe if her oxygen level dropped to 90%.  Sure enough, it dropped after about 5 sucks.  Once I would pull the bottle out, her stats would continue to drop down to the low 70's before she would bring them back up.  But she always did.  They had us stay in recovery longer and finally, after observation, and me telling them that she does at home what they were concerned about, they moved us to the lower level recovery room for more observation. We were there for what seemed like forever.  But, the nurse there witnessed what we were seeing, too.  

It appeared that Elissa was holding her breathe for and then when she realized it, she would struggle and move around and gasp and gag until she got some air.  She was hooked up the the o2 sat monitor this entire time.  What we learned is that Elissa was, in deed, having some apnea/non-breathing episodes.  I would wager that isn't have true apnea, as I don't think she goes longer than 10 seconds before she realizes she isn't getting any air.  But, after her nurse witnessed this, she left and came back in to tell me she had looked Elissa's diagnosis up and apnea is a symptom of what Elissa has.  

In fact, here is the list of signs/symptoms:

Signs of laryngomalacia

  • Noisy breathing (stridor) – An audible wheeze when your baby breathes in. It is often worse when the baby is agitated, feeding, crying or sleeping on the back
  • High pitched sound
  • Difficulty feeding
  • Poor weight gain
  • Choking while feeding
  • Apnea -- Breathing stoppage
  • Pulling in neck and check with each breath
  • Cyanosis -- Turning blue
  • Gastroesophageal reflux -- Spitting, vomiting and regurgitation
  • Aspiration – Inhalation of food into the lungs
Elissa has stridor, high pitched sound, choking while feeding, apnea, pulling in neck, reflux, and I've thought she turned blue a time or two and even asked about that in the NICU.  So, I'd say she has pretty classic Laryngomalacia.  

Dr. Carron told us that the thicker the liquid/food, the easier it would be for Elissa to take.  We have seen this come true just since Friday.  I'm going to check into that stuff you add to liquids that doesn't  have an calories because she is currently getting ALOT of rice in her bottle and she takes a BIG bottle.  She weighs 12.5 pounds at 12 weeks.  She is a big baby, but not out of proportion.  But I don't think all this rice is a good idea as much as she takes.  So, I'm going to check into that.

And, the big news is, we came home with a o2 monitor that monitors her heart rate and oxygen level.  I haven't used it much this weekend because I can't get the probe on right.  But we will follow up with her pediatrician tomorrow and see what she thinks about all of this.  

I'm so glad to have a diagnosis and even more thankful to know that it doesn't require surgery.  I sure did miss Bailey and Ellie while we were gone, but again, thankful Mom was here to be with them.  

Elissa won the hearts of her nursing staff through that whole ordeal on Friday.  But especially this one nurse, Brent, who told me he and his wife were trying to have a baby.  He told Elissa he hoped when they had a baby, they were as pretty and just like her.  He later told her that he'd just take her on home with him if I wasn't looking. Haha!  He lingered a little longer and kept coming back to the crib and telling her how sweet and pretty she was.  Elissa just smiled and talked to him. He finally told Elissa that she gave him a pretty good scare and woke him up early that morning.  It really was sweet, but it broke my heart.  It appeared that he and his wife had been trying for a pretty good while with no luck.  And it also appeared that he would/will make a great dad someday.  I've thought about how sweet and caring he was my sweet Elissa several times since Friday morning and I hope that one day he and his wife will have him.  

But it sure did make me thankful for the three sweet girls in my life.  Bailey, Elissa and Ellie- Mommy loves you all very much my pretty and sweet girls!!!

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