There are many mental images that I have cataloged over the years, some good, some not so good… but there is one that just doesn’t fit in any category previously held – the moment I saw Liam for the first time. It doesn’t matter how many children you have, you spend your pregnancy wondering what your baby looks like. Does he have Dad’s ears? Does she have my nose? Will he have my crazy fang? We hope upon hope that they are born perfect and whole and healthy and because we live in America and eat bread fortified with Folic Acid and take our prenatal vitamins and abstain from drugs and alcohol, we assume that this will be the case. But I digress… Here’s the picture - The moment our son is placed on my chest, I am concerned. He is purple. Dark Purple. He is hard-core screaming and his face is incredibly swollen. My mind is already beginning the process of folding in on itself and at this point I see his lip. Something doesn’t look right. I look closer and sure enough, my fears are not unfounded. I immediately think of my husband and feel enormous guilt. Did he see? Was he blaming me? What had I done? What had I not done? A hundred questions race through my mind in the blink of an eye. After what seems to be an eternity I finally work up the courage to look at Bill. He hasn’t moved, he is still just over my left shoulder. I look at him without really seeing him and hear 2 words I desperately need to hear. “It’s ok”. I hear other voices and slip back enough into the real world to realize that the midwife and the nurse are in the room with us. I hear the midwife whispering about how swollen he is without sounding offensive, just commenting, really. I hear the nurse whisper something to her and I hear Noreen say, “what? Ohhhh… awwww…”. I can’t look at any of them.
After a few minutes it is apparent that he is cold so we get out of the tub and into the bed. I hold Liam while they wrap us in warm blankets and begin the post-birth process. The entire time I’m trying to wrap my mind around everything. I can’t stop asking myself what I had done wrong. I feel Bill next to me, I feel his strength, I feel like he’s protecting us. That feeling never went away. I sweep my finger across the roof of his mouth when no one is looking. It feels ok. Noreen asks me if I thought it was his palate, too and I tell her I don’t think it is. They call the Neonatologist. I try to nurse Liam before I have to allow him to be examined, but he’s having trouble latching on. The nurse takes him and starts looking him over and starts making loud observations about how wide-set his eyes are, how far apart his nipples are. She starts listing syndromes. I want to grab my baby and punch her in the face. I don’t want to think about all the could-be’s right now, I want to get back in the tub with my baby and do the whole thing over. I want the picture I had painted while I was pregnant, of me and Bill looking down at him as he’s born, me lifting him to my chest, of us both seeing the baby we created in love, of him seeing us. I don’t know whose nightmare I’m in.
My Mom arrives and I send Bill out to the hall to “prepare” her. She comes in and stands right next to me and strokes my hair. I can tell she’s trying not to cry. Bill is standing by Liam, taking pictures. The Neonatologist comes in and examines Liam and says he has a cleft lip and palate. So many things are going through my mind and I can’t stop my brain for a second to try to get a handle on any of it. I hear my Mom tell me it’s going to be ok. That she’ll be there if I need her to go to appointments. I hear the midwife and nurse and Neonatologist talking and I feel myself fading in and out. I hear Bill’s voice, he’s telling me something, I look at my Mom, she repeats it. “He looks good. He thinks it’s just his lip and palate.” I’m not sure. His eyes ARE very wide-set. His neck is really thick, his face is so swollen we haven’t even seen his eyes yet, other than a quick flash when we could see that they were completely bloodshot. I am praying like I have never prayed before. I am praying for this to be all that’s wrong. I am praying for forgiveness for whatever I have done to cause this, and I am praying for my baby.
The next day or so was a whirlwind. By about 6 AM I was able to nurse him and he continued to nurse until they came in to check his bilirubin levels. This would become a common occurrence in our hospital room. I wanted to check out AMA like I usually did, but his bilirubin was so high from his excessive bruising that we needed to stay until it was under control. We had a constant stream of medical personnel “visiting” us, and a lactation consultant that basically set up camp in our room for the entire day. Nurses and patient advocates brought us countless internet printouts and pamphlets. I nursed him as much as I could, but he was so sleepy. It was such a challenge to get him to wake up enough to even latch on and once he did he fell asleep. I consider myself a nursing pro. I’m borderline militant. I have nursed 4 children and have helped dozens of other women nurse their babies. I got him to stay latched and listened for the swallowing and when they came in to weigh him I was not concerned. I was in for another surprise… he had lost almost a full pound. I doubled my efforts and begin pumping just in case.
Wednesday came and we were due to go home. They checked his bilirubin levels and they had skyrocketed to 17. They wrapped him in a biliblanket and told us it should work. He looked like a glo-worm. I continued to hold him and nurse him as much as possible. By Wednesday evening it became apparent that Liam’s bilirubin levels were not declining and due to the breakdown of his excessive bruising, his levels were only getting worse. Our nurse, an angel sent straight from heaven to our room that day, held me while she told us that our baby was being admitted into the NICU and that we would have to leave. Without him. I completely lost it at that point. “I’m not the kind of mother that just LEAVES her baby!” I told them. “There’s just no way I can do that!” I begged them to find another option, but when faced with the reality of the true danger of high bilirubin levels, I had to relent, under the condition that they allowed me to sit next to him in the NICU. After a few conversations with the patient’s advocate and some string-pulling from our angel-nurse, they agreed.
At 11 PM I walked Liam into the NICU and Bill had to leave us at the door. Bill had stayed by my side almost constantly, leaving only to eat and shower. Without needing to be asked he became our shield and my filter. He greeted visitors at the door, he made phone calls, he held my hand and wiped my countless tears. Having to leave his wife and new baby at the hospital after all we had already been through had to have been heart-wrenching. Watching him kiss Liam good-bye that night tore my heart in two. Had we not suffered enough?
That night in the NICU was rough. I wasn’t allowed to sleep so I stayed awake reading magazines and counting the hours until the doctor came to release Liam to go home. 7 AM, I can make it that long. 7 AM came and I was asked to leave so they could do rounds. When I came back at 8 I learned that the pediatrician had already come and gone and said that Liam’s levels were still too high and he would have to stay until the evening. I literally collapsed. At this point, I hadn’t slept more than 45 minutes since Saturday night. I was emotionally drained and this was just too much for me to take! I thought we’d be finally taking him home that morning!
Bill showed up minutes later and we decided it was best if I went home to get some sleep. I hadn’t seen my kids since Sunday evening and I knew they were worried. We went home and showered and I tried to lay down, but my sister and my stepmom were there taking care of the kids and I really wanted to visit with them. We had some good laughs, which I REALLY needed and soon after we left to go get Liam. When we arrived at the hospital they told us the doctor had been by and again did not clear him to be discharged, he’d have to stay another night. At this point, I was SO numb. I still hadn’t slept and I just gave in and accepted it, realizing there wasn’t a whole heck of a lot I could do. Let go and let God, right? We stayed to give Liam a bottle, since being introduced to the Haberman in the NICU, he was refusing to nurse, I pumped so he’d have food for the night and we went home to bed.
The next morning, we received the call we’d been waiting for – Liam was going to be discharged that day! We showered and dressed as quickly as possible and made it to the hospital in record time. We were told Liam had one more blood draw at 1 PM and then he’d be cleared. It was the loooongest 3 hours of our lives! At one point while we waited for the results we realized we hadn’t eaten since sometime the day before so we ran down to the cafeteria to get some food and when we returned we were greeted by the most wonderful sentence I have ever heard… “Daddy, get the carseat, baby’s going home.” After being there for 5 days, Liam was finally being released!
Once we arrived home, Liam met Isaac, Gabe, Jack and Hannah and Bill went to pick up Van and Logan… they all gathered around him on the floor and took turns holding him… they were so gentle and loving… I had been so worried about how they would react to their still puffy, red-eyed, purple baby brother, but each one cradled him with love and affection, each one kissed him tenderly and told him they loved him. They accepted him readily into our fold… it was if we had all, banded together as a family, side by side, holding hands, opened our circle and pulled him right into the center…
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