This is the day, 2 years ago, we got the phone call that Genevive was sick. 2 am in the morning, I know we rushed to the hospital, but I can't remember the ride, or getting ready to go. This is the day she had her first bowel resection surgery. It is also the day she was baptized. I have been running this day through my head over and over today.
The hospital called and I remember I assumed it was a problem with Lillian. I was surprised when they said Genevive was sick. They said she had blood in her stool and distention on her belly and a hole in her intestine, they just said I needed to come in right away to sign surgery papers.
When I got there, they stopped me from scrubbing in, they brought me to the small family room behind the desk. I remember a male nurse manager, he asked me if I had anyone ("a support system") I could call to come be with me, he said "the baby is really sick". I said there was no one, my husband had to stay with our son. They told me a bit about NEC, they said it was an inflammation of the intestine and usually presents near full feeds. They said at 5:30 her belly looked fine, at 9:30 it looked bad, at 11pm it was very bad and they called in a surgeon from hasbro to check on her. The surgeon said a large amount of bowel is involved and the 11pm x ray showed a large amount of air, she said there is a good chance of a stoma needed. They had me sign the papers for the exploratory laparotomy, bowel resection if necessary, and also to put in a Central line (Large IV that threaded into one of the large veins that lie close to the heart, it has several ports). When all the signing was done I asked if I could go see her now, I scrubbed in and went over to A-bay.
In A-bay I was heading past Lillian's isolette to Genevive's which is on the other side, but the nurse stopped me and pointed to a warmer on the right side of Lillian in the corner. I walked right past her because I didn't recognize her, she looked so sick, I had thought it was another baby. She was green, and her belly was really swollen, and she was intubated. I remember I walked up to the warmer and saw her and gasped and cried right off the bat, it just took me by surprise. I gained my composure back and walked over and talked to her a bit, she opened her eyes and looked right at me. I remember that moment brought me peace, it made me feel like she was her alert little self still. I felt my voice was comforting to her, and that she knew it was me. I was nervous to touch her, but I did rest my hand on her head, something I did a lot in the NICU with them both. A surgeon from hasbro came and talked to me a little bit, I don't remember a lot of that conversation, I was focused on Genevive. But I know it was basically we don't know what will happen until we get in there and see what is going on.
Then the transport team came to get her ready for her surgery. The transport unit is an isolette on wheels, it has everything attached to it. They put her in it, and moved her oxygen and pulse ox and blood pressure cuff to the machinery in the transport unit. But she didn't like being moved. Her sats dropped, and she struggled a bit. They watched for a minute to see what she would do, then they bagged her and manually pumped 100 percent oxygen for a few minutes. Right when someone mentioned to me that she might not be well enough to transport, she stabilized.
They asked me if I wanted to wait in the NICU. They thought it would be better to sit with Lillian and wait. I declined and said I would rather go with Genevive. The surgery was being done in Hasbro Children's Hospital next door, so it meant going through the basement maze over to the next hospital. They warned me they had to go fast with the transport unit. They were not kidding, We ran through the basement halls, it was a long run, I was getting worried I couldn't keep up. Finally we reached a point where they had to bring her into the surgery room, and someone else walked me to a waiting area. It looked like a recovery room for patients after surgery, lots of curtains with beds in between, but empty. I sat in a chair and waited for what seemed like forever. Later on I know it was 2 and a half hours. Finally the surgeon came out and told me that the surgery went well. That it was a severe case of NEC and he had to remove 75 percent of her bowel both small and large intestines, but that she had enough left to survive if the NEC doesn't progress. He said her recovery would be a long road but she is more stable than she was, She had a central line put in and two stomas. First they needed to get her stable after surgery, then see if she can feed and if the bowel she has left is enough or functional. They said someone from surgery would talk to me in more detail later, and then someone escorted me back to the NICU. I was disappointed I couldn't stay with Genevive, but she was in recovery. I spent some time with Lillian and waited for her to come back about an hour later.
When I finally saw her, I was so relieved. She looked so much better! She was not that sickly green color anymore, and she was a tiny bit swollen from the surgery, but not the same as the swelling from the NEC. The team kept a very close eye on her. And she also had a nurse assigned to her alone, this nurse was Pat. She was wonderful, she knew exactly what she was doing, and she put up with me. She answered my questions, and was very supportive. After Genevive's death I asked her to be Lillian's primary nurse, and I am not sure I could have made it through the rest of my NICU journey without her. When she changed the bandages, she showed me the incision and stoma's, really they didn't look bad at all. I expected much worse.
The surgeon came and spoke with me a bit more about the surgery during the day. We talked at length about what NEC is and what could have caused it. She said it was "NEC on the worst end of the spectrum, a severe case but not catastrophic". She said Genevive had 50 cm of small intestine left. 5 to 6 cm of the remaining bowel was diseased but not dead, and they would keep and eye on it and felt it could heal. She explained that 40 cm is the bare minimum to work with, that without a colon the body can't absorb nutrition properly and eventually there would be liver failure. You can't survive without a bowel. She said they took care of what they needed to, but that doesn't mean the NEC is cured. We have to wait and see of the disease continues. About half of these babies go on to lose more bowel. The next 48 hours are critical. My job is to talk to the baby and be with her. And the single most important thing I can do is to keep pumping. That if she recovers they want breastmilk for her.
The morning was mostly uneventful. The team did a lot of tweaking settings and things. I sat in the big blue comfy chair they had brought me in the middle of the night, getting up when something seemed to be happening to be nosy, and watching her sleep. Around noonish she finally woke up from the sedation. But she had been through a lot, I talked to her for a couple minutes and then she closed her eyes, and went back to sleep.
The second half of the day she just seemed to get progressively worse. Her blood pressure kept dropping a lot, and they were pumping a lot of fluids into her. She got blood transfusions, and plasma. Pat told me that they had to give her fluids to keep her blood pressure up, but the extra fluid would move out of her blood and into her other cells, so even though she is swollen she still needs more fluid. She told me that Genevive would continue to get more swollen. I also at one point asked if I could see the X-rays from the night before. And someone showed me all of Genevive's X-rays and I took photos of them. It was sobering to see the before and after X-rays.
At around 7pm she started having issues oxygenating herself. They did an X-ray to make sure the vent didn't get out of place. I remember at this point I was asking a lot of what if questions. and Pat asked me "you know this is very bad right?". I said I know, I am just trying to stay positive. But it made me think and I spoke with Eddy and we decided to have her baptized just in case. At around 10 pm the catholic priest from Hasbro came over and baptized both babies. The nurses brought out the most beautiful baptism gowns from threads of love, with little bonnets and little blankets. Genevive's was 3-6 lb and trimmed with purple, and Lillian's was 1-3 lb size and trimmed with pinks. Genevive wasn't really able to be moved, so we put the gown over her, and made it look good, then I used the blanket to cover most of her wires.
Then after the baptism Daddy and the Priest went over to Genevive and did an extra blessing for her. The priest said "because she really needs it right now". I was still holding Lillian.
Once that was done I stayed at the hospital a while longer, but hadn't slept in two days. So the Neonatologist that was on the night shift had a conversation with us. She first talked a bit about "heroic measures" to save genevive's life if things went south, and asked us how we felt about that. We said we felt whatever was needed to save her we should do it. Then she assured us that Genevive would be ok, and that we really should go get some sleep. I told her I was worried about leaving because Genevive got sick and no one called us until hours later. She assured she would call for any tiny change. So we went home to get some sleep. She did call once to say that Genevive was still having trouble oxygenating and they decided to switch her to a jet ventilator, she said it is gentle on her lungs but gives more respiratory support. And she was still having trouble maintaining her blood pressure and they gave her some new medication to try to help that. I slept for a total of maybe 3 hours. Finally I couldn't take it any more and we showered and headed back to the hospital.
