They wheeled me down to our recovery room. There Jack was looked at by the Pediatric Hospitalist. He checked Jack over and said that he looked perfectly healthy. Sean and I agreed because we of course think he's perfect :). I tried to get him latch again and was unsuccessful so I asked the lactation nurse to come back in. We worked with Jack for around 45 minutes and still couldn't get him to properly latch on. He hadn't eaten much but he wasn't fussy so they said we would give it a few more hours and try again. We laid Jack in the bassinet and were getting ready for bed when he started choking. The nurse was in the room with us and saw him struggling so she picked him up and used the bulb syringe to suck out his mouth. Ella had the same issue the night she was born. Because both of my children had an extremely fast birth ( Ella was 15 min. of pushing and Jack was literally 3 pushes) they didn't have much compression to help them get all the mucous and fluid out of their airways. With Ella they just sent her down to the nursery and used a higher powered suction device that helped her stop choking and she was just fine after that. I told the nurse that I wanted her to do the same thing with Jack and she agreed, so she wheeled him down to the nursery. About 20 minutes later the Hospitalist came back in. Which immediately we thought was odd because he said he was done with us.
He walked over to my bedside and said "I need to talk to you about your son's mouth". I'm sure that Sean and I looked like a deer in headlights. The doctor explained to us that Jack had a cleft in his soft palate. They had missed it in his check up earlier because its so far in the back of his mouth. The doctor explained that it would mean a few things for us.
1. Jack would most likely have some feeding issues- meaning he couldn't nurse like a normal baby, he would need a special bottle and possibly even a feeding tube if he was unable to use the bottle.
2. Jack would need surgery. A cleft in the soft palate makes certain sounds impossible to say so at around age 9-12 months they will have to close the cleft so that Jack can speak properly.
3. He will probably need speech therapy. We sat there quietly while he listed these things off to us. I kept trying to pay attention to what he was saying while trying not to burst into tears.
The nurse brought Jack back to the room and I all but ripped him out of her arms. Sean and I immediately got online to research cleft palates. We found that it was extremely rare to only have a soft palate cleft, no one really knows the cause of it and that Riley Children s Hospital has the best craniofacial surgical team in the country.
They sent a new lady in from lactation to see if Jack would latch at all. When he was unsuccessful again they told us that he would have to be fed a bottle of formula so that we could see if he was able to eat properly. Apparently a cleft in the soft palate makes it hard for him to breathe while eating and it is easy for him to aspirate milk into his lungs. An hour or so later a different Pediatric Hospitalist came to our room to inform us that Jack would be moving to the Special Care Nursery. They wanted to make sure that his oxygen levels were staying up while he drank his bottle. Yet again I sat quietly while a doctor explained things to us and tried my best to focus on her every word w/o bursting into tears. She walked us down to the special care nursery, explained all the rules to us ( only 2 visitors at a time, one had to always be a parent) She showed us where to wash our hands and arms before entering and then what button to push on the outside wall so that a nurse could buzz us in to the nursery. They took him over to a special bed and started hooking him up to the monitors.
I lost it.
I had been trying to hold it in for the past few hours and was doing my best to be strong but seeing them hook him up to the monitors did me in. I was uncontrollably sobbing for a few minutes. I tried to hide behind my husband in the corner of the room. The pediatrician was so very compassionate. She quickly grabbed some tissue and found a rocking chair for me to sit in. She handed Jack to me and said "Mommy, he's going to be fine, I promise you this is fixable". I kept apologizing for crying and she kept assuring me that Jack was healthy and would be fine.
They showed us a special bottle called a Haberman and said that it would help Jack eat. He took it like a champ and sucked down a half ounce of formula in 10 minutes. For the next 24 hours Sean and I took turns doing Jack's feedings ever 3 hours. One of us was always in the special care nursery holding Jack and talking to him. Later in the evening the doctor came back in to give us a hand out about cleft palates. She listened while we asked questions and voiced concerns and then she put her hand on my shoulder and told us we were good parents. It is amazing how much that touched our hearts! In the midst of everything that had just taken place it was so nice to hear that. For the past 24 hours we had felt like we were swimming upstream and playing catch up and for her to say that really reassured us that we could do this. We could get Jack through whatever obstacles were coming our way.
I pumped every 3 hours even though I was only getting a few drops (if that) and then I would syringe feed him the drops. We annoyed the nurses, asking questions about every monitor, every stat and every test. Because a cleft palate is a midline defect they wanted to check other organs for defects so they ordered a head to toe ultrasound for him. Everything came back normal except for a heart murmur and even that closed the next day. Every time they gave us a goal for Jack he would blow through it! AFter 24 hours they let him come back to our room and we had to wheel him back down for each feeding to be monitored. After 24 more hours they didn't need to monitor his feedings anymore, but wanted to keep him there just in case. Then on Tuesday morning they came in and started walking us through the discharge papers.
We left the hospital on formula (which broke my heart). I wanted so badly to nurse Jack but its just not possible for him. 5 days after he was born my milk finally came in and we were able to cut back on his formula in take and after 7 days we were able to cut formula out completely. So far my milk supply is keeping up with him and I've actually been able to put some reserve milk in the freezer. Jack eats like a champ and is gaining weight beautifully! He gets extra gassy from swallowing air during his feedings and that can make him fussy but he's normally such a chill baby. For the first few days it was hard to enjoy him, I know that sounds awful but I just felt like he as so fragile and that I would do something wrong. But now we are into our own routine and learning his little personality and loving every minute with him!
So there you have it. The story of Jack's birth and the discovery of his cleft palate. I will be keeping you updated on our journey with EPing and with Jack's surgery in the future. Thanks for sticking with me and reading all of this :)
here are some pictures for you as a reward !
