Update on Feeding and the Heart

Kirsten and I met with Madeleine's attending neonatoligist and cardiologist yesterday-- we now have weekly Tuesday afternoon meetings scheduled to review her progress and ensure that we're all on the same page. The meeting was very helpful as we've learned a great deal more about Madeleine's heart and plan for surgery and plan for feeding.

Let's discuss feeding first. X-Rays taken on Monday and Tuesday showed that Madeleine isn't quite ready for feeding yet. X-Rays will be taken on a daily basis and the attending doctor is going to be extremely conservative in re-introducing food and will most likely delay feeding until he sees an even distribution of gas throughout the bowel. Such an even distribution will indicate that Madeleine is back to "normal" and is prepared to feed. Given all of the trauma to her bowels in the past week and a half, it is not surprising that she isn't quite ready for feeding. Additionally, the doctors simply don't want to push Madeleine any more at this time. She is stable and is gaining weight and, for right now, that is just fine and feeding will be reintroduced very slowly.

Given Madeleiene's stability and overall improvement, the cardioligists and cardiac surgeons discussed Madeleine's case on Monday (there is a weekly meeting where all potential cardiac patients are discusses) and it was decided that Madeleine's heart surgery will most likely be scheduled for the next 1-3 weeks. Here are the reasons that have led to this decision:

1) As Madeleine has been weaned from the morphine, her breathing has increased quite rapidly. Fast breathing is an early sign of heart failure and to limit this fast breathing, they have increased her laseks (a diuretic) to three times/day, the highest dose that they can administer.

2) Madeleine's AV canal is a large AV canal. Given this large opening, a large amount of blood shunting is occuring also leading to potential early heart failure.

3) Madeleine's down syndrome increases the likelihood of pulmonary hypertenstion-- a very serious problem that should be avoided as much as possible. Hypertension can be fatal and given the possibility of it occurring, the cardiologists are inclined to operate on her earlier than they would on a child without down syndrome.

4) Madeleine has gained enough weight and has also demonstrated the ability to rebound well from surgery.

5) Finally, and perhaps most importantly, Madeleine's intestinal issues and other health issues (weight gain, etc.) are tied to her heart condition. While it would be nice to have her grow more before surgery, it is also possible-- perhaps likely-- that her overall development will increase dramatically once her heart is fixed.

In short, this schedule is not what we expected but we think it could be a very good thing and could put us on a fast track for improvement. With that being said, we've raised the issue of getting a second opinion and we're working with our cardiologist to plan out the best approach. We're inclined to agree with Madeleine's team of doctors but, given the importance of this decision, we want to be sure that this decision makes the most sense.

Assuming we go forward with the surgery, Madeleine would most likely be transferred to the Cardiac Intensive Care Unit (CICU) next Tuesday, May 4, and surgery would be scheduled about a week later (give or take a few days). Once surgery is complete, there is a 4-5 day observation period and then Madeleine would most likely return to the NICU while she continues feeding and growing. At that point, we'd begin discussions around a scheduling for re-attaching her ostomy and also bringing her home. There are a number of hurdles/challenges related to both of these events (surgery and bringing her home) and we'll worry about those once we get past the heart issue.

That's all for now. We'll keep you updated as we learn more about the plans for heart surgery in the next few days. Thanks,

Brent and Kirsten