It has been so nice to have the little guy home. Of course, we're not getting any sleep, but enough to get by. Ezra is 11 weeks old tomorrow; 10 days old had he been born to term. We're supposed to think of him as a 10-day-old, when it concerns development. He doesn't do things a term 2-month-old does. He is very much like a 1 to 2 week-old newborn. So, from here on out, we'll talk about his chronological age and his corrected age. It gets a little confusing, but we're used to it.
NIGHT 1: The kids were ecstatic to have Ezra home. They wanted to hold him and take pictures. But first, upon arriving, we had to feed Ezra, cook dinner, and I had to pump milk. It was a hectic 2 or 3 hours. All three kids were asleep by nine and Peter and I sat down to watch a movie and both of us fell asleep during it. And that night was a doosie. I got about 20 minutes of sleep every hour between 10pm and 6am. It added up to be about two and a half hours. Saturday was busy running errands to get last minute things for Ezra. But my mid-afternoon we were all zonked and just sat in the livingroom, zoning out in front of the TV. Sunday was not much different.
The rest of the week went fairly smooth. Ezra is having a terrible time eating independently—either from the bottle or nursing. We find ourselves relying more on the feeding tube and I don't like that. And Ezra is on so many medications, that it's difficult to keep them all on a timely schedule. On a good note, Ezra is a good sleeper, sleeping through most of the noise the kiddos make. But, like most other newborns, he has his days and nights confused and wants to be awake at 3am. He's also a lovable little guy that LOVES to cuddle.
A home health nurse has been visiting him every other day to check his vitals, his weight, and his O2 levels. He's passed them all.
On Thursday, he had his check up with the pediatrician. By that time he was up to 6 pounds and was 18 ½ inches long! The pediatrician is concerned about him having a milk-protein allergy, which means I have to cut ALL dairy if I want to nurse. Please pray against that because I LOVE my yogurt and cheese! (I could do without the rest of the dairy stuff.)
On Friday, he saw the eye doctor, who suggested an ultrasound ON HIS EYE. Can you even believe that they are capable of that? Then, they can better see what the problem is and redirect him to a cornea specialist. The opthamalogist is certain Ezra will need a cornea transplant to have viable vision. Please pray they can figure out what the issue is and that they can fix it so that our little man will see!!! If it's a transplant, that Ezra would NOT reject the new cornea (which can happen about 20% of the time).
As we look ahead I am trying to stay positive and not think about the potential disabilities that may arise. Ezra has what the doctors call "dysmorphic features", which could be indicative of some congenial abnormality. Most of the doctors he's seen (the neonatalogists, his pediatrician, the eye doctor, the neurologist, and the geneticist) are all pretty certain he has something, but they've run many tests and aren't finding exactly what is wrong. I drove myself crazy this last week, looking stuff up on the internet and found a few RARE syndromes that Ezra might have. The thing of it is that if Ezra does have something, he would have been born with it even if I had carried him to term. Actually, it is very likely that it is what put me into preterm labor, because that is often the case for many of these syndromes. And it may also have been the reason I got so sick. Don't ask me how—that's what the doctors say though. I am just holding onto a prayer that all Ezra needs to do is grow and get a hang of eating and he'll "grow into" these features (the small, off-set eyes, low-set ears, elbow contractures, and limited range of motion). Only time will tell, and God's will be done. We just pray that Ezra can have a "normal", healthy existence, with all the same opportunities that his siblings will have.
Peter took the whole week off work. He goes back tomorrow and I am a little panicky about that. We don't have family here to help us, and our friends all live too far (and are busy with babies and older kids of their own) to offer any sort of assistance either. Its just us. I can already tell that the hours between 4 and 6pm are going to be the hardest. In that time I will need to feed Ezra, pump, cook dinner, and entertain the other two children (or keep them from killing each other). YIKES! I SO wish we had a back yard because then I could just send them outside to play without worrying about Jeremiah calling out to every car that drives by or Alayna running into the street. I long for the days when we will finally be near family!!!
Again, thank you all so much for your prayers, thoughts and support. It means so much to us. Please continue to pray for Ezra over the next year as he develops. He has quite a few hurdles to jump! God's blessings on you all…
