Up and Down

Sorry for the lack of posts since last Thursday. We've been very busy and I haven't been sure what to write. At this point, we were hoping to report that Madeleine was either sleeping in her nursery or was ready to come home in the next few days. Instead, we're closer to getting Madeleine home but there have been some bumps in the road.

Over the weekend, Madeleine started acting strange and there was a general consensus that she had come down with yet another infection. Thankfully, she doesn't have an infection but here's the concerning characteristics/data:

1) After reaching full feeds (42 cc's every three hours), Madeleine started showing signs of "dumping" where food passes through her intestines with very little digestion. Dumping is diagnosed when a large volume of output ends up in the colostomy bag. There are varying degrees of dumping and Madeleine was on the lower side but this caused them to back off and eventually stop feeding Madeleine for a few days.

2) Madeleine developed an abscess underneath the colostomy bag near the stoma (the intestines that stick out into the bag). No one is sure how this happened but it is clear that some stool (still my favorite hospital word) leaked out of the bag and burned off some of the skin. There was some concern that this area could cause a large scale infection. Thankfully, with help from a wound specialist, the diseased area is improving and Madeleine doesn't appear to be in any pain from it. (When first identified, it was obviously hurting Madeleine.)

3) Madeleine has been breathing slightly faster than the doctors like and no one is sure why. Typically, breathing fast can be related to an infection or some condition where water ends up on the lungs. (Madeleine's previous heart condition caused this issue.) An initial blood test showed that Madeleine's blood was slightly acidic-- another initial sign of infection. These two factors together led the doctors to conduct a series of tests: they checked her CBC and CRP to see if her white blood cells were elevated or if her blood showed signs of inflammation. They also took blood, urine, stool, and spinal fluid samples to culture for infection. All of this is standard procedure when it is likely that a baby has an infection. Fortunately, all of these tests confirmed that Madeleine doesn't have an infection.

While it is comforting to know that Madeleine doesn't have an infection, everyone-- nurses, doctors, and parents are confused as to what has been troubling Madeleine. In the end, we'll likely never be certain of the problem but the assumption is that we were simply pushing Madeleine too fast. The doctors wanted to get Madeleine feeding as fast as possible and between increasing her volume and trying to aggressively feed her via bottle, we think Madeleine was simply overwhelmed with change. Currently, Madeleine is being slowly worked back up to full feeds-- she gets increased today to 27 cc's every 3 hours and this volume will increase 5 cc's every 48 hours. She should reach full feeds again by next Tuesday. We'll continue feeding via a bottle but we won't be aggressive. In other words, if Madeleine looks tired, we'll feed via the tube in her nose and we won't push her as much to work with the bottle. In short, we're just going to approach everything in a conservative manner.

So what does this all mean in terms of getting her home? We're not entirely certain but its likely that Madeleine will be hospitalized for a few more weeks. She still has a PIC line in her arm that will stay until the doctors are convinced that she can tolerate full feeds and won't need further antibiotics. (They started her on a general antibiotic drip when infection was suspected.) She is also on a small amount of breathing support-- to help slow down her breathing-- and this will need to be weaned. (They could take it away right now but they're limiting the amount of any changes in any given day so that they can be more clear on what issues might cause Madeleine to dump.) If all goes according to plan (and we all know how often that happens) once Madeleine reaches full feeds next week, they'll want to observe her for close to a week before she will be released. So-- our new goal is our old goal-- we'd like to get Madeleine home around July 1.

That pretty much sums up our situation. Kirsten and I have been fighting conflicting emotions over the last few days. We're obviously disappointed by this delay as we were pretty confident that she'd be home before the weekend. At the same time, we're extremely thankful that she doesn't have another infection and we hope this won't be a huge delay. Thanks again for everyone's support.

Brent and Kirsten