I was writing to you to let you know that the conversation with the Cardiologists went well. There wasn’t good news or bad news. They are glad that they did not do the surgery, as they are not sure that her left ventricle is big enough. They think it’s big enough, but marginally. They got good numbers suggesting that the left side of the heart is happy at least and that the pulmonary band is doing a good job of restricting her blood flow. They had decided to increase her feeds and calories, and yesterday in honor of her sister Molly’s 5th birthday she hit 5 lbs.
Unfortunately my daughter doesn’t give me much time to celebrate good news before more bad news comes along. Lisa and I have a cold and have not visited the hospital for 2 days keeping in touch often with doctors and nurses via cell phone. Last night when I was talking to the nurse she told me Madeline’s heart rate was 180 and asked if that was normal for her. I told her it certainly wasn’t, her normal rate is 137-140. The nurse called back at 1am to tell us that Madeline had a distended belly and that an xray of her abdomen showed signs of pneumatosis.
Let me explain this new term. Pneumatosis is the presence of gas bubbles in the walls of the intestines. This can be caused (most likely in her case) by poor blood profusion to the gut and/or too much feeding. The intestines aren’t able to properly digest, and get dilated which causes less blood to get to them and worsens the problem which can ultimately end in Necrotizing Enterocolitis (NEC) or tissue death in the intestines. Yes, it is as bad as it sounds. Sometimes antibiotics can take care of the problem, other times surgery is required.
This isn’t really a new problem for Madeline. Although she hasn’t had it before, being premature and a cardiac patient has put her at risk for this since she’s been born. There have been times where they suspected this and took every precaution and avoided it each time.
The nurse called us again at 4am to tell us there was definitely Pneumatosis, and they had stopped her feeding and started her on fluids, antibiotics, and pain medication. If the situation got worse, they had surgery room scheduled for 6:30am and a surgical team on standby. The would open her abdomen and remove portions of her intestine that were infected and stitch the rest back together. Lisa left for the hospital. Linda came over to watch the kids and I got here shortly after.
Dr. Barry (the top dog for the last 3 weeks) came in this morning. Briefed by everyone, he came into the room, stroked Madeline’s head for a while, turned and whispered: “Dammit”. All those that have been working with Madeline are upset about this. We’re all asking the question: “Could this have been prevented?” The xray they just took showed no change, it’s not getting better yet, but it’s not getting worse. The surgical team came by to see her again, they are ready at a moment’s notice. For now there is nothing we can do but wait and see if Madeline can start getting that gas out of her intestines.
Please pray for Madeline, pray that she can work all this gas out and return to normal. Pray that the antibiotics will work for her and that surgery can be avoided. Pray that God would heal not just this, but her whole body so we can start talking recovery. Pray for Lisa and I as we bear under this new obstacle.
Shanker & Lisa.