3/27 Ups and Downs

Welcome to the NICU roller coaster-- that's the theme for this post. My apologies for the lack of updates over the last two days. I've been busy at work and when I've had a moment to post, I haven't been entirely clear on what to say. I'll give my summary at the end, but here's the information we've learned over the past few days:

1) Madeleine didn't start feeding last Tuesday contrary to what the last post said. The doctors were prepared to start feeding on Tuesday and the last step was taking an X-Ray. The X-Ray revealed that Madeleine's intestines were "gassy." All intestines should have gas in them but when you looked at an X-Ray, rather than looking evenly filled with gas (like a coiled garden hose), her intestines resembled more closely sausage links. (not a perfect visual but you get the idea.) Yesterday, the doctors determined that it is possible that Madeleine is swallowing air from the nasal canula and simply couldn't pass all of the gas through the intestines. Therefore, they inserted a pump into her stomach to pull the air out of the intestines. An X-Ray this morning will confirm that this worked but our nurse this morning confirmed that her stomach looks less lumpy. If this is the case, it is possible that the pump will be removed and feedings will begin today or tomorrow.

2) The X-Ray this morning should also give us more information about her heart and lungs. As one can expect with Madeleine's heart condition, she is breathing faster than they want. The concern yesterday is that her breathing may be an indicator that the heart is demonstrating signs of failure. (Failure is a scary word but its the word they use to describe her heart. If her heart "fails" it isn't disastrous, she just needs surgery. Make no mistake about it: her heart will fail-- we're just hoping it doesn't occur for at least a few months.) This isn't likely-- based on our discussions with cardiologists-- but the X-Ray this morning should provide a better picture of the heart. Additionally, it will give us a better idea of her lung condition. If the heart is enlarged and/or the lungs are partially filled with liquid, this will lead them to focus more on the heart. On the flip side, Madeleine'e vital signs (heart rate, breathing rate, etc.) appear to be improving and this is an indication that her body is readjusting. Further underscoring the importance of starting feeding, the cardiologists believe that once her feedings begin her body will slow down breathing as it focuses on digestion.

I guess the summary of the past few days (which I've rushed and not explained well) is that Madeleine is in a very frustrating stage. She is making progress and is still ahead of the schedule posted last week but it seems that any procedure that the doctors contemplate must be weighed against the negative side effects. This frustration speaks to the interrelated nature of the human body and the complicated challenges faced by Madeleine. In short, our game plan is simple: keep Madeleine comfortable, get her feeding as soon as she demonstrates she is ready, and over the next two-three weeks, hope that she begins to put on weight. While focusing on this game plan, the doctors will also "worry" about her heart issues and anytime she takes a step back, they'll look to see if the heart is worsening. Obviously, the goal remains that she won't need heart surgery any time soon and we still think its likely that she'll have the intestinal re-attachment surgery and will come home before having heart surgerty 4-6 months from now. However, as we've learned many times over the past few weeks, the best laid plans.... you get the idea. :)

I'll try to post more often-- it is very cathartic and I'm frustrated for not writing the last two days-- but I'll warn everyone that bad news/up and down information is to be expected-- we've been warned that the re-introduction of feeding in babies with NEC is very traumatic (akin to running a marathon for us) and the doctors will let Madeleine's body tell them what to do next. While we expect these ups and downs, we're confident that she's moving in the right direction. Moreover, Kirsten and I are slowly becoming comfortable with the ups and downs (comfortable isn't the right word but gets closer to our sentiment) and we're enjoying our daughter-- despite not gaining weight over the past week, she's developing more and we'll post pictures in the next few days to show this development.

Thanks-- again sorry for the lack of posts. I'll try to update everyone this afternoon/evening with our update from rounds-- we're waiting for the doctors right now. Have a great day!

Brent and Kirsten