Confusing Day

Today's been a very weird day for us as Madeleine's body is sending mixed signals. Clinically, Madeleine is doing very well. She continues to eat very well (we're up to 9cc's every three hours) and she is resting well. We spoke with the nurse about an hour ago and the nurse said that she can set her clock by Madeleine's cries as she has learned to expect her food every three hours (this is going to be an issue when she comes home.) The only other times she cries are when her pacifier falls out (she's a pacifier addict) and when one of the IV's starts beeping-- she doesn't like the high pitched noise. Other than that, she's usually sleeping or just looking around.

While all of this is really good news, the lab results from this morning indicate that Madeleine's infection is getting worse as her CRP and white blood counts are all elevated rather significantly. The doctors don't believe that there is an infection related to the heart or the ostomy site and they're a little stymied to pinpoint what is going on. They've sent off cultures and hope that something will grow in the cultures that would provide further evidence. (Don't hold your breath-- its common for nothing to grow in the cultures.) In any case, the assumption right now is that one of Madeleine's lines is infected-- she currently has an IV in her arm and has the two leads going to the heart. The IV has been in longer so that's more than likely the culprit. The doctors haven't pulled the IV as this is providing her nutrition and there isn't an easy substitute if that IV needs to be removed.

In short, we're trying to learn more while also not trying to get too frustrated with the situation. From a medical standpoint, the only change for Madeleine is that she is receiving two anti-biotics to help the infection. Everything else remains the same and our hope is that we'll see the infection drop off in the next few days.

That's all for now. Thanks again for the support.

Brent and Kirsten

Not So Fast

I knew I shouldn't put up a post saying that things should get boring. Kirsten is at the hospital and just called to say that the doctors think Madeleine has a slight infection. There was some concern about an infection last night-- Madeleine had a slight temperature-- so the nurse sent off a blood test (CBC) to see if any numbers were out of whack. Madeleine's numbers came back slightly elevated but she appeared relaxed so there wasn't a huge area of concern. Still, they sent off one more test-- a CRP-- and it also came back elevated, indicating that Madeleine is fighting an infection. With this information, they are going to start Madeleine on 7 days worth of antibiotics. No one seems too excited (not including Dad) about this issue and we're all hoping that it won't affect the overall plan. Unless Madeleine shows further signs of infection, the feeding plan will continue as previously planned and we'll just hope to see her blood work come back clear in a few days.

The best news regarding the infection is that no one believes it is related to the heart as the incision is healing great. Instead, it is much more likely that the ostomy site is responsible for the infection-- that's a common problem with colostomy bags-- and they'll hope that the antibiotics helps resolve it without further complications.

That's all for now... Kirsten and I continue to keep our guard up as it seems whenever we let it down, we run into another issue... have a good one.

Brent

"Things Should Slow Down For a Bit"

Sorry for the lack of posts for the past two days-- I've been busy at work and home and haven"t had time to post. The short update is that Madeleine is doing very well-- the quote in the Title of this post was taken from our conversation with the attending NICU doctor. At this point, Madeleine is fairly well recovered from heart surgery and the doctors don't have many immediate goals for her other than the following:

- Finish weaning off breathing support: Madeleine is still on vapo-therm, a high flow nasal canula but is no longer receiving oxygen (only room air) and should continue to wean for the next week or so. They're not weaning any further today (she is on 4 mls of flow) as she shows some signs of being tired and they don't want to push her too far.

- Feeding: Madeleine is currently receiving 6 cc's of breastmilk every 3 hours and this will increase by 1 cc every 12 hours until she reaches full feeds (around 25 cc/feed). She's currently being fed by a tube but she will begin bottle feeding-- starting once/day and increasing as she gets better at it. The doctors like to wait until the nasal canula is reduced to 2 mls before starting the bottle feeding.

- Weight gain: Madeleine weighed 1820 grams (around 4 lbs) last night and the doctors hope to see close to 20g/day gained. This may be a little too aggressive given Madeleine's heart and intestinal issues but that's the goal.

That's it. At some point, we'll begin thinking about the re-attachment surgery but we have a few weeks before they would even begin trying to schedule the surgery. Typically, the surgeons like to wait 6 weeks following the last intestinal surgery but given Madeleine's past struggles, they may wait a bit longer. The six week period falls on June 3, so it is possible that surgery will be scheduled for early to mid-June. Still, at this time, its too early to project with any level of certainty. Our goal to get her home is still July 1 and that looks like it could be possible (give or take a few weeks).

That's all for now. My camera is charged and I plan on taking a bunch of pictures at the hospital tonight. I"ll try to post some new ones ASAP.

Thanks again for the support.

Brent

A So-So Weekend

First off-- thanks to all that sent Mother's Day wishes to Kirsten. It was a unique Mother's Day as one doesn't expect to have to visit their child in the hospital on Mother's Day. Still, we had a nice day hanging out with Madeleine.

In terms of Madeleine's health progress, this past weekend was largely treading water. We're a little frustrated with the slow progress and I think that Madeleine's quick recovery from surgery led us to believe that she was ready to take off. As we continue to learn in the NICU, progress is a roller coaster and we're sliding just a little bit. Still, there's nothing serious to report-- there's no infection to speak of-- so we're confident that the past few days are a mere speed bump. Here are the specifics:

- Madeleine is still on a relatively high nasal canula setting-- 6 mls and around 40% oxygen. An X-Ray on Saturday revealed that Madeleine's right lung was partially collapsed and they increased the flow a bit to help "blow it back up." Sunday revealed some progress and we haven't heard anything further yet today. We spoke with one of the cardiac surgery fellows as well as the attending doctor and they reassured us that this is common for patients after the AV canal surgery, especially with children with Down Syndrome. The nurses hope to slowly wean over the next few days as the lung issue resolves itself.

- Feeding: Madeleine's feeds were increased to 2 cc's every 3 hours and we're hopeful that the feeds will begin to increase a little more rapidly. Its possible (likely?) that they'll be hesitant to increase feeds until the lung issues are resolved. Additionally, we've been warned that as feeds increase, they may have to go up and down as Madeleine's gut gets used to feeding again. So far, they haven't seen any signs of residuals (inability to process food) or the converse-- dumping-- where the food just passes through the gut without digestion. If either condition arises, we'll figure it out.

- Future surgery-- we raised the issue of when the gut would be reattached and got the standard response of "it depends." We have a family meeting scheduled for tomorrow afternoon so we'll push a bit more. The basic thought that was expressed yesterday is that if Madeleiene's feeding increases as we hope in the next 1-2 weeks, and if she starts gaining weight, the surgery would likely be scheduled around the first of June. Additionally, Madeleine would have to dodge any infections and other complications. Since we know how up and down the NICU can be, we know that a June 1 timeframe is tenuous at best but it at least gives us something to shoot for.

That's all for now. I'll get a report from Madeleine's nurse around noon and I'll relate anything that's groundbreaking. Enjoy the Monday-- we're just hoping it stops raining in DC.

Kirsten and Brent

Quick bragging on my daughter

I'm leaving the office right now to visit my daughter in the NICU. That's right, you read that correctly. She's already been released from the Cardiac unit. I'm a proud papa!

Extubation and Continued Good News

Madeleine is off the vent and is doing great. Here are the details:
- She is breathing on a nasal canula with a relatively high flow (6 mls). They started her back at 100% oxygen but have already reduced to 60% and will go down to 40% soon. They'll continue to wean throughout the day with the eventual goal of eliminating all breathing support. (We're probably weeks away from removal of all support.
- The ostomy is working well-- she is getting output into the bag (a lot of output after surgery) and is now stooling (one of my favorite hospital words) as she is feeding on small amounts of breastmilk.
- They've removed morphine from Madeleine and will give her Tylenol 3/Oxy Contin via her NG tube (feeding tube). I'm not sure how long they'll continue the pain medication-- probably for a few days.
- They weaned off a heart medicine-- I forget the name-- and she is doing great.

Next Steps include:
- Removal of the last cardiac monitor-- there is one wire remaining inside her heart. This will likely be removed by tomorrow.
- Weaning from breathing support.
- Slow increase in feeds.
- Continued weaning from Laseks-- a diuretic administered after surgery.
- Transfer back to the NICU-- she is still in the Cardiac ICU. This could occur as early as Saturday.

Once Madeleine is back in the NICU and has established regular feeds while weaning off breathing support, we'll sit down with her doctors to determine her path moving forward. In order to come home, the benchmarks are still the same: She must be off all medical support, must be able to maintain her own temperature, and must be able to feed on her own from a bottle. Once we've met these three benchmarks-- or at least have a general idea of when these three could be met, we'll have to determine when it is best to re-attach her intestines. It is possible that we could bring Madeleine home with the colostomy bag and then would return when the doctors are more comfortable re-attaching. It is also possible that we'd schedule the surgery while she is still in the NICU. Generally, the surgery is scheduled 6 weeks after the last gut surgery. If they stick with this timeframe, Madeleine would have surgery around June 1.

In any case, those are all issues for another day/time. Today is a day to smile and celebrate! Thanks for your support.

Brent and Kirsten

Still Going Strong

This picture was taken this morning and should give you a good indication that Madeleine is doing very well. You can see in the photo that Madeleine is still intubated. The doctors were hopeful that they could remove the tube yesterday but were concerned enough by her afternoon X-Ray to delay until today. The X-Ray has already come back today and Madeleine could be extubated as early as this afternoon. (There's a small chance it could get delayed until tomorrow but this isn't a concern-- she should be off soon enough.)

Here's the game plan for today:

1) Extubate: This could occur as early as noon today.

2) Feed: The doctors will begin feeding with breastmilk 6 hours after extubation. Most likely, she'll be fed this evening.

3) Removal of surgical wires. Madeleine has one pacing wire remaining in her heart and the doctors expect to remove it.

If we meet these three milestones today, it would be a GREAT day and Madeleine would be close to returning to the NICU. Over the next week, the remaining goals would include the following:

1) Slowly increase feeding to reach Madeleine's full caloric intake.

2) Slow weaning from the nasal canula. (The breathing tube will be replaced from the canula.)

3) Removal of the arterial line. This will be removed once the doctors are convinced that she won't need additional breathing support. (As early as Friday).

4) Return to the NICU-- could occur on Friday but also possible to be delayed until next Monday.

There is one disclaimer to this entire message: Every date/timeframe is subject to immediate change and slowing down isn't necessarily bad. The largest concern remains infection and that will be the biggest thing that the doctors worry about throughout the next few days and weekend. If we can make it through the weekend without an infection, we're probably close to out of the woods and can begin focusing on other worries.

One of the questions that I've been asked is "With the heart fixed, is it reasonable to expect to see a faster recovery?" Our answer is a firm "Maybe." Long-term, the heart surgery will allow Madeleine to grow and we're expecting great results. (We'll know more about the surgery's effectiveness when they do an echocardiagram next week.) In the short-term, it is possible that Madeleine's body will struggle with the new heart and the doctors refer to this as a "breaking in period." The analogy that I've used (and haven't shared with the doctors) is an alcoholic that quits drinking and starts eating healthy food. Obviously, this will improve the person's health in the long-run but the first few weeks can be very difficult. Its still too early to know if Madeleine is going to struggle with the heart (though all signs indicate she is doing great) so while we fully expect a full turn-around and long-term success, we can't predict when she'll begin to thrive and grow.

That's all for now. We hope that our next post will report that Madeleine has been extubated and is prepared to begin feeding. Thanks again for everyone's support. Kirsten and I are beginning to breathe a little easier and its feeling good. Take care,

Kirsten and Brent

PS- Check out the new pics on the side of the blog as well.