Tuesday, August 31, 2010

Our Journey

Wow...two years ago today we were finally able to bring our sweet baby boy home from the hospital. After spending 10 days in the NICU, we brought Wyatt home at 11 days old.
Nothing with this pregnancy was typical so I should have known his birth and hospital stay would be no different. We went through 8 months of fertility treatment, had many ultrasounds and then find out our baby was breech...so a c-section would be in order. That was not what I had 'planned' which meant I was bound to flip this baby and prepare for a natural birth. ;-)
It was on the day we went in for our 36 week check up that we found out my fluid level was low so he needed to be delivered within 48 hours. That was when the drama began and the rest of the story is history.

As I look back two years later, it is amazing how much I had forgotten from our 10 days in the NICU...it's a good thing I documented it at the time. In case you are interested, feel free to read Wy-man's story below. (I warn you it is lengthy...)
I just thank the Lord everyday for bringing Wyatt into our lives and for healing him. You would never know now that he had such a tough start to his life...

Our NICU Journey - Aug. 22, 2008 - Aug, 31, 2008

Fortunately, Wyatt is a pretty healthy baby - just born 3 1/2 weeks early. He was frank breech (with his feet up by his face) and when we went in on Aug 18th to find out if we could flip him, we found out his fluid level was low. They were worried he wasn't getting good enough blood flow so they quickly scheduled a c-section. We went in 2 days later and Mr. Wyatt arrived. He checked out well in the OR so they let us take him to the newborn nursery. So our first night in the hospital we were able to spend quite a bit of time with him. He started out really well with nursing but it would really tucker him out. So as the first night progressed, he became too sleepy to eat so his blood sugar dropped. Once that happened the nurses got a little concerned...so they tried the bottle, but he didn't want a thing to do with it and that made his respiration really high (which was also concerning them) so they kept him in the nursery to monitor him. In order to make sure his levels didn't drop any more they had to put a feeding tube down his throat to get a little food in his belly. From there we thought our troubles were over. We tried to nurse again and he was still too tired. Since his blood sugar wasn’t rising they were going to need to do the tube again and that meant he had to go to the NICU. Mike and I were both very upset and Wyatt was off to the NICU at 5:45 on Thurs. the 21st.

So that began our 10 day stay at the NICU. They put in an NG (Nasogastric intubation) tube through his nose and into his stomach so they could use that to feed him. We were put on a feeding schedule (8, 11, 2, 5) so he could eat 8 times a day. I was only allowed to feed him 4 out of the 8 times (at the most) and the other 4 had to be done to through the tube. So that helped us keep his weight up. (He would burn too many calories and lose too much weight if he had to nurse and/or bottle all 8 times. Since I was discharged on Saturday I was allowed to choose what time his NG feeding were – that allowed us to go home a get a couple hours of sleep. He had his own room so they would allow us to ‘room in’…Mike tried that the first night but got no sleep b/c all of Wyatt’s neighbors were loud criers. ;-)
Finally, on Sunday (the 24th), they took out this NG tube allowing him to nurse/bottle for all feedings. It was at that time that he needed to bottle at least 3 of his feedings so we chose the 2 am and 5 am feedings for the nurses to bottle so we could get some rest. (That schedule was really a lifesaver.) I would go in for his 8 am feeding and stay until midnight (for this 11 pm feeding) then go home to sleep and pump. The nurses were wonderful in helping me cope with leaving his room for short periods of time. ;-)

Then he started getting jaundice so they put him on a Bilirubin blanket. He was on that for 4 days and they took him off of it on Thursday to see how he would do in the next 24 hours. (It is amazing how much dressing him in ‘regular’ clothes lifted my spirits.) He did well so that was nice.

The requirement to leave the NICU (in Wyatt’s case) was to gain weight consistently for 2 days in a row. We started out strong, then had 2 days of weight loss so that was why we weren’t about to leave on Thursday as the doctors had originally planned. After seeing some weight gain on Wed. night, I was feeling very positive until we had a little ‘spell’ Thursday afternoon. When he would take his bottle feed he would make this gasping noise – which we now know is called stridor. After a video swallow test (they took x-rays while he was swallowing from different bottles and nipples) that allowed them to see if he was aspirating. Come to find out he was…it was only a miniscule amount, but just enough to be concerning. They didn’t want fluid going into his lungs. We were 95% sure he wasn’t doing it while nursing but since they have no way to test that during the swallow test (as he had to drink barium) they couldn’t know for sure. The conclusion of the swallow test was that he was diagnosed with larangoomalacia (caused by prematurity). So in laments terms, he has a ‘floppy airway’ allowing fluid down his airway causing him to aspirate…and because of that, they now need to thicken his feedings to syrup consistency. So they took him off nursing for at least 2 weeks – I am allowed to pump but then we have to fortify my milk to add extra calories and then add a gel thickener as well. This thicker consistency allows that extra nanosecond while he is swallowing for his vocal cords to close so he doesn’t get fluid down them. This is something he should out grow – could be 2 weeks or maybe more. (It ended up being 9 months before we was on thin liquids for the first time.) We go back in 2 weeks for another swallow test – if he passes he will be allowed to nurse again, but if he doesn’t we will continue to thicken his milk until he grows out of it.
On Friday, they also had an ENT doctor (ear, nose, throat) come and put a scope up his nose and down his throat to look at his vocal cords. (They wanted to make sure there weren’t any other issues related to the tracheomalacia.) The ENT dr. gave us a good report and the only thing he saw was that his vocal cords were a little red which indicated he had a little reflux. So we learned about that early on (thankfully he hadn’t become cranky yet) and now we know to hold him at a 45 degree angle (or more) after each feeding to keep the reflux under control.

Then Saturday rolled around (our second expected discharge date) and we weren’t able to go home. They wanted to watch the stridor to make sure it was under control before they would let him leave. We found out at that time they would release him today (Sunday) if we would go home on a monitor – this monitor checks his heart rate and his respiration. They just want to make sure that all of this goes away. They would hate to send him home and then something happen. It is an inconvenience but a peace of mind at the same time. When he is in our eye sight, we don’t have to have him hooked up…but when he is sleeping or we are in another room, we must have him hooked up. Then if something goes wrong, an alarm will sound and we will know to tend to him right away. I think the dr. biggest concern is we are entering cold and flu season and if he happens to get a cold, since he was premi his airway could close off and we would have no way of knowing. As time progresses hopefully we will only need it on him at night when we sleep. But it sounds like it could be on him for 4-6 months. But it makes me feel better that we are being cautious.

That brings us to today- now we are HOME! They discharged him this morning around 10 am and I have never been happier (and emotional of course). He is a wonderful baby and so far not too fussy. I hope he stays that way as he gets older. So keep your fingers crossed. ;-) He now weighs 6 lbs. 7 oz. so we are on our way!

We are VERY thankful that his issues have been mostly minor in comparison to what other families are going through. I have learned a lot and hope to adjust well to life outside the NICU.

1 comment:

  1. What a precious little guy! What a rough start. So thankful God took care of your precious bundle. =)