A Very Good Weekend

My apologies for the lack of posts over the weekend, we were very busy and had a great weekend with Madeleine. More importantly, Madeleine made some really great strides this weekend. Here's the medical information:

- Ventilator: Madeleine was extubated on Saturday and was moved to a simple nasal canula. This was a major step and she continues to breathe fine with minimal support from the canula.

- Blood Pressure: Madeleine was completely weaned from Dopamine over the weekend and is slowly being weaned from hydrocortisone. These medicines are both "pressers" and can present a serious stress to the heart if overexposed. It is great that she is almost done with this support.

- Infection: Madeleine's white blood cell count and all other signs of infection are extremely low and indicate that she is over the infection. She'll continue taking antibiotics through Friday to be safe, but it appears that the worst of the infection is over.

- Pain Medication: Madeleine has been on morphine since the last surgery and is slowly being weaned. She is on a very low setting and we expect her to be fully weaned in the next few days.

- Feeding: Madeleine continues to have output into her ostomy-- its mostly enzymes and gas in the colostomy bag-- and this indicates that her bowels are working and should be ready to begin feeding. The nurses expect Madeleine to start small feedsin the next few days-- possible tomorrow (Tuesday) and we'll hope that this slowly increases and helps her continue growing.

- Current weight: Madeleine was weighed last night and she weighs 1935 grams (4 lbs, 4 oz.).

- Medical outlook/Plan Going Forward: As you might expect, we're extremely encouraged by Madeleine's improvement-- its really nothing short of outstanding. At the same time, we're trying to keep everything in perspective and expect the Doctors to be extremely cautious and conservative moving forward. With that being said, we have the following basic goals:

- Feeding: Get Madeleine eating and determine how effective she can feed with the ostomy. The hope is that she can reach full feeds and the IV nutrition can be removed. While this is possible, it may be unlikely as many times, the doctors reach a point where the food goes through the intestines so fast that nothing else is absorbed. If the doctors increase feeds, it just passes through and ends up in the ostomy. The doctors will monitor the volume going in and coming out of the ostomy-- they know that for full feeds to occur, the output in the bag should be about 35% of the volume she receives in breastmilk. So long as the output meets this goal of 35%, they'll continue increasing feeds until she reaches the desired caloric intake/feed.

In addition to simple monitoring, in a week or so, we think it may be possible for Madeleine to begin trying to bottle feed. When feeds first start, the doctors will use a feeding tube so that Madeleine doesn't burn any extra calories feeding. However, it is important that Madeleine learn how to bottle feed and we'll work with her. She's already sucking on a pacifier and this bodes well for bottle feeding.

- Removal from the Isolet/incubator: At her size, Madeleine is now a candidate to leave the isolet and be in an open crib. The doctors will be cautious to remove her from the isolet as they don't want Madeleine to burn excess calories in order to stay warm. At the same time, maintaining one's temperature is a key component in development and they'll push her as they see fit. Another factor is that Madeleine was very sensitive to light and sounds after her surgery last week. They won't fully remove her until they are convinced that she can handle the change.

- Plan for surgeries and going home: At this point, it is still too early to determine a time frame for either of the surgeries or for going home. That being said, we've heard the following explanation: If Madeleine can gain weight and feed effectively with the ostomy--we expect this to be the case-- then the doctors expect to schedule the heart surgery first. In terms of timing, there is no exact timeframe for scheduling the surgery but there are some guiding principles. First, the doctors want Madeleine to continue growing and reach at least 2.5 KGs. While growth is important as it is easer to operate on a larger heart, the doctors will also monitor Madeleine's breathing and the size of her heart with the goal of avoiding any undue stress on the heart. We know that over time, Madeleine will become stressed and this will lead to surgery. The big question we've asked is "will Madeleine come home before the surgery is scheduled?" Right now, we don't know but we think it is unlikely. The factors that would lead Madeleine to be released are very simple: She must be able to maintain her own temperature in an open air crib without external heat. Additionally, she must be able to feed on her own from a bottle-- full feeds. It is possible, but unlikely, that Madeleine could be sent home with an IV or with breathing support. However, given her multiple health challenges and the factors I've listed out above, we don't think it is likely that she'll be discharged before her two surgeries. Instead, we expect to closely monitor Madeleine's weight gain and breathing and expect that heart surgery will be scheduled in about 4-6 weeks. (This is just a guess-- the timeframe can change dramatically.) Once we get through the heart surgery, we'll figure out when to re-attach the ostomy and when she can come home. Again-- this is all tentative and can change based on Madeleine's progress. We'll continue to revisit this topic in future posts as we monitor progress.

That's all on the medical front. A few more quick notes:

- Thanks again to all that donated for the March for Babies. We raised a total of $3080! We walked this past Sunday and had a great time. (Pics will be posted later.) Additionally, we've talked with the March of Dimes contact at the Children's NICU and we intend to schedule a party to collect donations that can benefit parents in the NICU. We haven't finalized a plan quite yet but we'll let you know what we come up with and expect to collect money and/or goods at the party that we intend to hold.

- I'll post more pictures of Madeleine this evening. I've been warned of the importance of this a number of times. Look for an update tonight.

Thanks again!

Brent and Kirsten

PS-- I forgot to mention that Kirsten and I are feeling much better. We've both held Madeleine in the past few days and that has really helped settle us down. It is really hard to feel like a successful parent when you can't hold your kid-- that problem has been solved and we're ecstatic!