Time for an Update

I should have updated a long time ago. I am so tired and drained by the time I get home in the evening, all I want to do is sleep.  But I still have to be mom for a few more hours.  And the cycle repeats itself day after day....


I also have this ridiculous idea that I can't post if I haven't uploaded the pictures related to my post.  Well, I am going to try and get past that, and eventually get the pictures posted....


Thank you all for your thoughts and prayers and help in any fashion.  We appreciate it greatly.  We are so blessed to have so many people who love and care about us.  And who are willing to help.  We couldn't do it without you!


So, today is day 29.  He passed Aynsli 4 days ago in days in NICU.   On Day 11 Zachariah had his first surgery.  It is called a tongue lip adhesion.  Because he has the small lower jaw, much of his airway issue is caused by his tongue falling back and blocking his airway, causing oxygen issues.  In the surgery they sewed his tongue to the inside of his bottom lip, to prevent it from falling back.  To keep it in place while it healed, they sewed 2 buttons--one on the outside on the bottom of his chin--one on the inside, on the back of his tongue.  Yes, and I am sure it is as bad as it sounds.  He was nasally intubated for 3 days post op, to make sure he had a sure airway while some of the swelling went down.  (That was intubation #2).  After he was extubated, they put in a nasal trumpet, which helps hold the tongue down, and create an airway.  During the 8 days with the buttons, Zachariah had some pretty bad episodes with his breathing.  I am sure that having a feeding tube, a nasal trumpet, and a button all in the back of your mouth is not an enjoyable thing, and when you are still learning to coordinate your breathing, it can cause some issues.  --I would imagine even if you know how to coordinate your breathing it could cause some problems. 


Obviously this was never a happy thing to witness, and we worried a lot about what our options might be.  We had been told the only 2 other options were jaw distraction, where they put little screws into his jaw, pull it forward, and turn them weekly to create bone growth behind it.  His gap is relatively small-- only 2mm, so this didn't seem like a good option for him.  And beyond that, was a tracheotomy.  Obviously no one wants to have that, and it is certainly something we didn't want to do  if it wasn't absolutely  necessary.  He did so well most of the time that just seemed so drastic.  But we weren't sure what was going to happen. 


On Day 19 he got his buttons removed.  That alone was great.  He looked so much better.  He had the nasal trumpet and high flow oxygen, but seemed to be doing well.  By Day 21 he was still having some occasional "bad" episodes where he would desat and couldn't recover without intervention.  And he was still having episodes where he would desat and recover on his own.  The frequency of both of these was very concerning, and we weren't sure what was going to happen, because he can't come home with the frequency and severity of desat episodes he was having.  It was a very discouraging and frustrating few days.


On Day 25 we requested a care conference with all his doctors, so we could create a plan to work towards getting him home.  His ENT, Dr. Muntz, who is kind of in charge of his care, said that there was no issue  going home with a nasal trumpet, and oxygen/air flow.   He also said that they send kids home all the time with NG tubes.  The NG tube is going to be the NICUs biggest issue if his airway issue is stabilized.  They just don't send babies home with NG tubes.  We can totally understand--it does have risks.  If the tube were to somehow get into the lungs instead of the stomach, you could have major problems.   It is certainly  not my favorite thing to place--but I have done it before with Aynsli, and if Zachariah is stable with his airway, and the NG tube is all that is holding him back--we will do it again--we don't want that to keep him in the NICU.  And I guess that past experience is playing in our favor, because they have agreed to let us do that.


On Day 24 Zachariah had his feeding assessment.  He has to have a special (and expensive--$25 per nipple) bottle, but he did really well.  He still isn't able to take a whole feeding through a bottle--hence the need for the NG tube--but he is able to do it and coordinate his suck, swallow, breathing pattern without aspirating. That is such good news!


On Day 27 he had his hearing screening, and did not pass.  That does give us cause for concern, because his loss right now is in speech developing tones.  However, they do say that the test suggests it could be do to fluid in his ears--which is particularly common with small jaws and cleft palates.  So they will retest in 4-6 weeks.  We will continue to pray that it is just fluid, and will resolve itself with or without the need for tubes.  We also got confirmation that we are to start our training in preparation for going home.


So yesterday, on Day 28 we started some of our airway training with the Trach nurse.  He is not getting a trach, but she is the one who is doing the all the respiratory stuff.  She told us yesterday we are "blazing new trails", because they have never sent anyone home with the nasal trumpet before.  So there is no training module, no teaching packet--we are making it up as we go along.  We are grateful they are letting us do this!  So we did some placing of the nasal trumpet, did some suctioning, and did a placement of the NG tube.   All things that we need to do a few more times before he can come home.   And he will be coming home with all kinds of paraphenalia.  A pulse oximeter monitor, oxygen/flow in some form, a suctioning unit, and probably a feeding pump.  We are going to have our own little NICU corner set up in our bedroom.  But we are grateful that we are at least talking about it and it is getting closer.   


Zachariah also got his casts on his legs yesterday.  For the next 4-6 weeks he will be in hip to toe casts.  And they are plaster and probably double his weight.  Not quite, but he is bottom heavy now!  :)  He will get them changed weekly, and then they will lengthen tendons, be in cast for 3 more weeks, and then move to shoes with a bar for the next 2-3 years.  


All kinds of craziness, but we are moving forward and making progress.  We still have a lot to do, and a lot of things we need to get in preparation for bringing him home, but we are headed in the right direction.


So that, is the last 18 days in a nutshell.  It all runs together, and keeping things straight is nearly impossible.  But we are so thankful for the good care he receives, for the blessings we all have received, and that this situation is temporary.   We in the last few days have been reminded by babies around us, that our situation isn't really that bad--but that is a story for another day.


I will add pictures as I can, but at least I got the words down!  : )


Thank you all for your love and support!