Hellobee

After D’s surgery to treat NEC, he was left with an ostomy bag and plans to have a reconnection surgery in 6-8 weeks. This happened in the beginning of December, so I mourned the idea of having him home for Christmas; at least he was home for Thanksgiving. The weeks in between the two surgeries were mostly uneventful. D was on IV nutrition and was only allowed to get 1 mL of breastmilk an hour (since they didn’t want to stress out his compromised digestive system, but still wanted it moving), but I continued pumping every 3-4 hours in hopes that I would need the supply later when he recovered. This stay was different from his first in so many ways – the first time we kept pushing and testing him and anxiously awaiting him being discharged. This time, we knew he was only coming home after recovering from the reconnection surgery, so I just waited until we got to the 6 week mark to start bugging people. But even then I knew he’d have to stay a while longer to get up to eating his full volume of food again.

Lots of conflicting emotions!

At this NICU (which we were briefly at before for his feeding tube surgery), the babies were in private rooms, and the nurses would typically hang out outside of the rooms in the hallway when they weren’t in with a baby. Although other moms I talked to really liked the privacy (especially those who lived at the bedside and never went home), I didn’t like it. I missed our old NICU where there were so many people in one big room, always someone to chat with or idly ask questions. My schedule (of when someone could be with K so I could be with D) was still pretty similar, about 4-6 hours a day. However, this hospital was farther from home, in downtown DC with parking issues, so I spent more time dealing with that and not as much time with D.

Another big difference was in the “rounds” style. Our first NICU had a policy that the doctor on shift would either meet you at some point while you were at the bedside to update you, or give you a call if they couldn’t catch you or you couldn’t come in. It wasn’t a teaching hospital, so there was only one doctor to deal with at a time.

This NICU was a teaching hospital, and had morning rounds (ranging between 9am-12pm) where they would go down the hallway stopping at each baby to discuss that day’s plan. If a parent was in the room, they’d open the door and try to include them (although rarely going so far as to enter the room). If you missed those few minutes, then it was much harder getting a doctor (or nurse practitioner or fellow or whatever) to come give an update, and you relied on the nurse, who may/may not have caught them as well. As I’ve mentioned in the NICU tips post, our social worker was helpful in getting me to speak with doctors and surgeons when I’d otherwise miss them (surgery rounds were at like 4am!). I tried to make rounds but wasn’t always able to get there on time.

D was still sleeping a lot, so it was some lonely days for me spent letting him sleep in my arms/on my chest, reading stuff on my phone, and carefully trying to transfer him so I could pump. There was a pump in the room. I brought a cover to deal with the glass walls and got totally comfortable talking with 6+ doctors while holding everything together!

The surgery was finally scheduled for about 8.5 weeks after the first. It was first thing in the morning, and due to traffic Mr. Tiger and I didn’t make it in time to see him before he went into the OR! We were surgery waiting room pros at that point and although we were anxious, it was such a better wait than the initial one where we didn’t know what to expect.

D shortly before the reconnection surgery – goodbye ostomy bag!

When we met with the surgeons afterwards, they said it went well; so well that they were able to extubate him right after the surgery! He had lost a lot of intestines but they were hopeful that he would be fine, although the recovery would be slow. When Mr. Tiger and I were allowed to see him back in the NICU, he was very unhappy; obviously his tummy was hurting a lot. Because he wasn’t on the ventilator, they were being very cautious with the amount of morphine they would give him, since too much could lull him into not breathing. However, he kept startling which of course made his tummy hurt, and then he would cry which would also hurt, etc. Our voices and gentle touches seemed to calm him down some, but it was awful for all of us.

The next morning when I was driving in to see him, I got a call from the social worker telling me they had to re-intubate him since he just gave up breathing. His nurse told me she thought the pain was just too much. She was right there next to him and thankfully was able to quickly administer the needed meds and get him intubated. They didn’t want me to have to discover that without some warning, which I appreciated, although getting an unexpected call from the NICU while driving basically gave me a heart attack! I was so sad that they hadn’t just left him intubated so he could have been more sedated and in less pain. At least he would now have a few days where he could be zonked out and recover. Because I couldn’t pick him up when he was intubated, I just sat with him talking to him, holding his hands and feet and stroking him.

Sigh, intubated again…

Thankfully a few days later he was extubated and weaned back off oxygen. Then it was just a waiting game for restarting his food and then seeing how his new, shorter intestines could handle everything! To be continued…

Look at that tummy – all put back together!

Friendly reminder of D (and big bro K!) doing awesome these days