Tuesday, February 11, 2014

Little N's First Year, Part 7: Recovery in the Hospital

We were told to go to the PICU where Little N was still coming out of the anesthesia. It was a quiet room with few patients, but only one baby, ours. He was in a small hospital crib, with an oxygen mask over his face, his arms braced with cuffs so he couldn't bend them, an IV in his arm, and he looked very groggy. He barely moved, and all you could hear was the sound of him breathing in the mask. He looked miserable. I wasn't prepared to see him this way. But what really surprised me was his mouth...it looked SO swollen, much more than I expected it to. He couldn't even close his mouth, it was so puffed up inside. I knew he would be in so much pain if it weren't for the medication.

The nurses told me I could hold him. I carefully lifted him out of the crib and held my precious boy. But I couldn't do it for long. I began to feel nauseated, so much that I handed him to my husband and had to walk away. I couldn't bear to look at his mouth and how swollen it was, and what really made me feel sick to my stomach was the smell. The after-surgery smell, the blood, the trauma, it was too much for me to take in. I just hated seeing him this way, but I also knew he would get better. It would just take time.

We were moved to a recovery room. Once there, the nurses said I could try feeding him. I didn't think he was ready. How could he possibly eat with such a swollen palate? I gently put the nipple to his mouth, and he instantly tried eating. I squeezed the bottle to assist, and it seemed like he was at least trying to eat, although not much was going down. It was then that I knew this recovery was going to be harder than I ever imagined, than I ever was told by the surgeon.

The first day I continued the feedings, but he never got anything down, really. So they kept him on the IV. Dr. Martin came to visit and said he looked good, and that most likely he would go home tomorrow. I already knew this, and planned accordingly. I could handle one night in the hospital.

The first night he woke every few hours, not because he was hungry, he had the IV, but because he was in pain. The Tylenol study that I agreed to do proved to be ineffective, so the nurses gave him morphine. Sometimes he was in so much pain, crying, wriggling around, that I didn't know what to do except ask the nurses to administer more medicine. And he still wouldn't take the bottle. We even tried different types of bottles, even went back to the pacificier/syringe method I used as a newborn. But his pain was too much.

We made it through the night, and the next day, but things did not improve much. He still needed morphine, still wouldn't drink from the bottle, still on IV fluids. Dr. Martin wasn't concerned yet, and told us he does have some patients that stay more than one night. Well, I wasn't prepared for more than one night. I was told it would only be one. So when the evening approached again, and he still wasn't eating, I faced the fact that I'd be in that hospital room, trying to feed my baby who didn't want to eat. In a way it was very similar to his birth...I spent the first day or two learning how to feed him WITH the cleft palate. Now that it was fixed, I spent the first day or two learning to feed him again, WITHOUT the cleft palate. Only this time, I wasn't the one recovering from a traumatic experience: my baby was. And it broke my heart.

The second night was the hardest. Little N squirmed and cried until about 4 am, not sleeping at all. The medicine wasn't helping as much as it did during the day. He still wouldn't eat. I was so worried. I kept wondering when he would break through, when he would be my Little N again. The morning came, and very early, I woke to a whole team of doctors surrounding the bed, Dr. Martin not included. They asked how he was doing, and I told him, NOT GOOD. They said he really should be able to go home today, as long as he can drink at least one ounce of milk. They decided to take him off the IV to encourage more hunger from him. If the diapers became too dry, they would simply put him back on the IV. They also told me that today, many babies would be coming into the recovery area, some with bad infectious diseases, so they really wanted to get Little N home. Wonderful.

Since I had the whole team there, I asked how they repaired the palate. I wanted specifics. So far, all I heard from Dr. Martin is that they were going to "close the bridge," so in my mind, it just meant that they sewed the middle together. But after the swelling went down some, I noticed he had stitches around his gum line. One of the doctors got a piece of paper and drew how the repair was done. He described that they first CUT OUT the two sides of the palate from the gum line. They then sewed those two pieces together down the middle. And then they stretched the sewed palate out to the gum line again. But since his palate was so wide to begin with, they had to fill the middle with a little collagen. I HAD NO IDEA. I felt horrible for Little N. No wonder he didn't want to drink from his bottle! I just could not imagine how much pain he was feeling, especially as the medicine started to wear off. This is what I mean, doctors don't give you all the details.

After they left, I made the decision: I was going home today. Little N was going to eat. I was not staying in that hospital one more night. So I worked with him, tirelessly, and by early afternoon, he finally got down one ounce of milk. But then the next time I tried, he didn't want it. It was still hit and miss. Some of the doctors came back to check on him, and I told them I really feel like he's ready to go. By that time, he was back to his usual self--happy, playful, smiling, just not wanting to eat. His diapers were barely wet. But I knew I could do it. I got that same feeling I had when I was in the hospital after his birth--I knew I could care for him now. Somehow I convinced the doctors that we could go home, despite him not eating much yet. So my husband met me at the hospital, we got our pain medicine from the pharmacy, and off we went, leaving behind the morphine, the nurses who could come at a moment's notice, the IV fluids. I tried to remain hopeful.

On the 30 minute drive home, I tried feeding him once again. And then something amazing happened...he took the bottle in his hands, for the first time ever, and produced enough suction to drink a little bit on his own. After seeing this miracle, I knew we could do it. And for the most part, we managed okay....until the next surprise sent me into complete panic....

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