In addition to his cord being around his neck, he also had a true knot in his cord. The doctor said it was "chilling" whenever she saw that. So scary. I didn't get to hold him for too long when the took him over to examine him, because of the cord issues.
I was looking over there at him while she sewed up my little tear. I heard the nurse say to Ken... "Put your finger in his mouth. You feel that? He has a cleft palate."
I had absolutely no idea what that meant, what it entailed, what would happen. I was kind of in shock because of the cord and the palate. I was really worried. My doctor assured me that he'd be fine and I should be able to nurse him. The nurse said she didn't think he'd need surgery til he was over a year. But I still didn't know what would happen. They cleaned him up and gave him back to me. He was just beautiful and perfect. They said his lip and gum weren't involved, just his palate. I tried to nurse him in the delivery room and he latched on and off just like my other newborns. It turns out 22 babies were born that day and night, so we waited down there for several hours before we were moved up to the room.
We got up to the room about 2am. The nurses came in and checked us. I went to the bathroom by myself (the nurse was surprised, lol) Then a lactation consultant came in and tried to get him to latch on. We used a modified football hold so he was sitting more upright. I was able to feed him a little bit and we got left alone at 4 am. Yes we were up for 24 hours. Then of course someone came to take our vitals at 4:45, and then i got up at 5:45. I took a shower and got ready for Leo's pediatrician to come. I had lots of questions for him. He came around 7:30. He said he was going to refer us to this great surgeon who would come see us that day. He said that a lot of cleft palate babies are able to nurse, most have to have some kind of supplementation. Not knowing whether he'd be able to breastfeed caused me the most anxiety all day. I called the lactation consultant in every time we tried, and they were very helpful. We tried all kinds of positions, nipple shield, etc. I had to pump every 2 hours and feed him the colostrum with a syringe. And I had to try to nurse him every 2 hours as well. We focused so much on feeding for the three days we were in the hospital that we asked our family and friends not to come. It was the first time we didn't have many visitors, but it was really good to be able to focus on feeding him.
We had some success nursing with and without the shield, and I also diligently pumped colostrum and fed him with a syringe every 2 hours. I got anywhere from 1-4 ml each time for the first day, then the next day I got up to 7-10 ml at each pumping session. My milk did not come in fully until the third day. By that time his biliruben levels were up and he had lost a whole pound. The nurses and lactation consultants said he was ok though, and we never did have to supplement formula. I was really happy about that.
The surgeon came the first evening. He was SO nice and put my mind at ease. Before he came, I didn't know if he'd need surgery in a few weeks, few months, or what. He said that he would have one surgery when he is around 18 months, and that should be the only one he needs. He explained what that entails, and said he'd have us come to his office in January to explain it in more detail. He looked at him and said he has a "complete cleft." He said that he would most likely be able to breastfeed with some extra help and patience. He also said I didn't have to do anything differently when starting solid food. After his surgery, they will follow up with him with their team until he's an adolescent, and give him any help he needs, with speech therapy or whatever.
The second day he was so sleepy he hardly ate for about 10 hours, just a few sips and a few syringes here and there. Not even the lactation consultants or nurses could wake him up. But in the afternoon he woke up and nursed for about 40 minutes, which was by far the best he's ever done. I had several different lactation consultants and nurses help us. He started doing better. But the pediatrician wanted us to stay one extra day to make sure we had it down, and to make sure his bili levels weren't too high when we left. Heck I didn't mind too much - it's almost like a vacation at that hospital! The food is fabulous, the nurses are great. I love it there. I did miss Madeleine and John Paul though. They were able to come meet him the first night. Madeleine was THRILLED, and got up on the bed with us, touched him, held him, and was just in awe. It was a beautiful thing to see. John Paul didn't pay much attention at all, but that was to be expected ;) We got to go home last night (Saturday.) But when we left, his bili levels were high so they wanted us to come back the next day for another blood test.
His first night home wasn't bad. It's a lot harder to feed him that the other babies. It takes longer for him to nurse, then I have to supplement with a special bottle, then I have to pump for the next supplement session. It takes quite a long time to feed him. I'm hoping and praying that when he gets a little bigger and stronger, we will just be able to breastfeed with some supplementation. I know nothing about this. He is doing MUCH better but it's taking a lot of work. But it's totally worth it to be able to nurse him. He is just a wonderful, sweet, beautiful baby and I love him SO much.We took him back to get his levels checked and they were even higher than before. So they sent a home health care worker out today with a bili blanket. He has to lay on it 24/7 until they tell us he's ok. We have to go back tomorrow and check again.
Then Tuesday I am going to meet with his pediatrician and the lactation consultant at his office. And Thursday I am going back to the hospital for a follow up with their lactation consultants. We have got to get this feeding thing down. Please pray for that!
I am convinced that Jesus and His mother were watching out for my sweet baby. I know it's dangerous to have a cord around his neck and a knot in it as well. I don't even want to think about what could have happened. I am so thankful for our little miracle baby born on the feast of the Immaculate Conception.












































