Lilly's Story - Surgery in the ICU

After that heart wrenching night in the hotel, we called the ICU first thing in the morning to get an update on Lilly’s status. Lilly's infection levels had not decreased, and her belly was becoming increasingly red and inflamed. They put her on a ventilator in the night, not because she couldn't breathe on her own but because of the large doses of pain medication they were giving her. They also informed us that the doctors had decided that she would need surgery and that we needed to be there by 8:00 AM. The doctors weren’t sure what they were going to find, but they were concerned that if they waited any longer and her large intestine perforated, it would be fatal. We got dressed and got over to the hospital as quickly as possible.

I will be the first to admit that I looked terrible. A night of crying had left my eyes swollen to small slits. When I walked into the ICU, Lilly’s nurse asked if I was able to get any rest during the night. They prepped Lilly for surgery and then let us sit by her bed in the OP as they waited for the doctors to arrive. I wanted to say a prayer aloud with Peter, but I was doing everything possible not to lose control of my emotions at that moment so I silently prayed to God to protect her and to guide her doctors. I had an enormous lump in my throat, and my heart felt as if it had a 100 lb. weight sitting on it. I was doing OK, and then we had to leave the room and stand outside the door as the anesthesiologist started talking to us about the risks. It wasn’t his talking that got to me, but just not knowing what was going to happen. I was just so scared for my little girl. You would have thought that I wouldn’t have had any tears left, but as I watched them finish their prep, I could hardly see through all my tears. It was a really ugly cry, but I imagine the ICU folks see a lot of that.

Lilly pulled through the surgery like a champ. We are lucky that she is such a chunky little thing and that she went to full term. Apparently her condition is one that is very commonly found in premature babies, and her size and fully developed body give her a huge advantage. The doctors informed us that the surgery was a success. When they saw inside her tiny tummy, they found exactly what they had suspected. A part of her large intestine was inflamed, bright red, and even black in some places. They created a sort of bypass exit route at the end of the small intestine and put in an opening for a colostomy bag (we kindly refer to this as a poop bag, and it is essentially a bag that attaches on the outside of her abdomen and collects the waste). Having this new exit pathway will allow the infected portion of her large intestine to either have a chance to heal or the severely infected part will kind of shrivel up and die away. After 12 weeks, they will go in again and cut out that dead part of the intestine and reconnect the pieces of healthy intestines allowing food to move through the regular pathways again, after which the bag can be removed.

If all goes well, she will be a regular kid who can run, jump, swim, and play with all the other kids. Relief washed over me at the idea of Lilly having the “normal” life that I had hoped. I was also relieved to learn that my efforts of pumping to get breast milk for Lilly were not in vain. She would not get any food for a while after surgery, however she would slowly be started on tiny doses of breast milk a few days after surgery and if things go well, they will increase slowly and eventually she will even be able to nurse.

We saw Lilly after her surgery, but kept our visits that afternoon short to allow our little girl the rest and quiet that she needed to recover from surgery. I have to say here that the hospital that Lilly is at is incredible. The building may be old, but the staff is excellent. I truly believe that Lilly has the best doctors around who are incredibly knowledgeable and skilled. The nursing staff is an amazing combination of skilled and nurturing. Everyone has treated Lilly as if she were their own baby, and they have treated us with patience and kindness, always available to answer questions and listen to our concerns.