As a matter of fact, he sucks so little they won't let him leave the hospital. That's right - he's
still in the hospital.
After Parker was born on Monday afternoon, we were moved to my room at around 6:00 that evening. They took Parker to the nursery to check him in. We ate some dinner and waited for him to come back. My family left and they brought Parker back to my room so I could try to feed him. When I tried to get him to nurse, he had a really hard time latching on and sounded
very conjested. Brian and I suctioned out his mouth a couple of times and just got clear fluid, so we figured it was just left over amniotic fluid or something. After a few minutes when the conjestion didn't improve, we decided to call the nurse to take him back to the nursery to be checked again.
After what seemed like half of forever, our nurse came back into the room and announced that the neonatologist had determined that Parker had a cleft palate and was going to the "Special Care" Nursery, which is the NICU (his lip is fine, which is why no one saw it earlier). I couldn't believe what I was hearing. My whole body went numb. Then the tears started. I was so scared, angry, confused. How did this happen? Was it my fault? What would this mean for his future? I turned the lights out and cried. Brian remained calm, and tried to console me as best he could, but I was very upset. I know he was too, but he kept it together for me.
It wasn't until around 11:30 p.m. that we actually saw the doctor that admitted Parker to the NICU. He explained Parker's condition and what we may be looking at for the future and some information about the Special Care Nursery. I have to admit I remember little of what he said, I was so shell-shocked and upset. I do remember the doctor saying these babies have a really hard time eating/feeding because part of the roof of the mouth is missing, creating problems forming a good suction on the breast or bottle. In retrospect, that was quite an understatement.
On Tuesday evening,
Dr. Burstein from Atlanta Plastics came to see Parker. Dr. Burstein is affiliated with
Scottish Rite's Cranio-Facial Center, and does the majority of their surgeries. He has an excellent reputation and is considered to be the best for this type of surgery in the southeast, so at least in dealing with this problem we are in the right place, thankfully. He examined Parker and thought he looked really strong. When Dr. Burstein checked Parker's mouth, he pushed his tongue against the tongue depressor and yelled. The doctor said this was a good sign, because babies with clefts tend to have "floppy" tongues which can obstruct their airway. Parker's tongue is not floppy, so luckily he doesn't have this problem. Dr. Burstein talked to us for a while and explained what he thought happened with Parker and his cleft. He believes Parker has what is called
"Pierre Robin" Sequence (looks like the bird, but is pronounced "roban"). In Pierre Robin, somewhere between six and twelve weeks gestation when the facial bones are forming, the baby tucks the chin to the chest and stays there, possibly getting the chin stuck between the collarbones. This pushes the chin back and the tongue up into the roof of the mouth, blocking the palate from being able to close together. Parker's cleft is the exact size and shape of his tongue. They will still do genetic testing to rule out a genetic problem, but the doctor thinks this is likely what happened with Parker. He said in some babies they need to do surgery when they are about a week old (!) called a mandibular distraction to lengthen the jaw to help with breathing. Luckily, he did not believe Parker needs this surgery and prefers to see how his jaw grows on its own. He would like Parker to be followed at Scottish Rite's Cranio-Facial Center and their feeding clinic, then he would have surgery to repair his cleft at around 9 months old. He said after surgery most babies make a full recovery and needs very little follow-up after that. I felt a lot better after talking to Dr. Burstein.
We started out in the 2nd floor NICU, where we were from Monday night the 30th through Saturday night, then we were moved to the 7th floor NICU on Saturday night, where we have been ever since. The 7th floor NICU is a transitional unit where babies go that are not quite as critical and are on their way home. It is so much nicer upstairs! We're working with physical/occupational therapy every day until Parker figures out how to feed from the bottle. The special bottle he uses is called a "Haberman Feeder". It's a bottle that requires very little suction to get milk out, but he's still having a hard time with it. He needs to take in 50 cc's (1.69 oz) every three hours in order to gain weight, and right now he usually takes in around 20cc's and gets so tired he just poops out on us and goes to sleep. We also only have 30 minutes to feed him, then we have to stop because at that point he's probably expending more energy and burning more calories than what he is taking in. Wish I had that problem. I've also been working with the lactation nurses here at Northside to see if he will also be able to nurse some as well. In the meantime, I'm permanently tethered to a breast pump every. three. hours. Good times, people, good times.
The bottle feeding and nursing have both been very slow going, which is why we are still here. Right now, he tries to take a bottle two to four times per day, and the other feedings he gets through tube. He's never finished a whole bottle, and when he doesn't, the remainder of the bottle also gets fed by tube. The important thing is that he is gaining weight. He was 6 lbs., 11 oz. at birth, then lost a few ounces and weighed 6 lbs, 5 oz. As of last night he weighed 6 lbs., 9 oz., so we're almost back to birth weight. They want him back there by the time he's two weeks old, so he has two more days to gain two more ounces-come on buddy, you can do it!
The doctor that has been seeing him here in the hospital has started to talk about sending us home with tube feedings, which terrifies me because the feeding tube has to be changed every three days, and they expect us to do it. We watched the nurse do it last night, and I can tell you I want no part of it. This is something that I will probably have to leave up to his Dad.
Well, I think that should bring everyone up to date - now I'll try to post a little update every day so everyone knows how he's doing as well as a few photos here and there. Please pray for Parker's feedings and growth, for Mommy and Daddy's sanity, and that he can make it home with us soon. I have now been in this hospital for 13 days, and most days I'm here for 10-12 hours. I just can't bear to leave him for much longer than going home at night to sleep, and even that's hard for me to do.
We're going to be able to give him a bath tonight, which I'm really excited about. Hopefully I'll have some photos to post later.
