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

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!

Update on Madeleine and the March

I just spoke with the hospital and, as I hoped this morning, all is boring with Madeleine. She's been slowly weaned off the dopamine today with the goal of getting her off (hopefully) by tomorrow. I don't know how likely that is to occur but that's the goal right now. Other than that, not much else has changed with her.

As far as the March for Babies is concerned, Kirsten and I are walking with her parents, Carol and Steve on Sunday. Feel free to contact me (202-222-5416) if you'd like to join us. If you've already donated-- thanks again for your tremendous support. At last count, we've raised $2985 with a total of 50 different people donating. We're floored by your support and are proud to be marching on Sunday with the Children's National Medical Center. It's really great to see that Madeleine's challenges can have such a postive impact.

That's all for now. Have a great weekend.

Brent and Kirsten

Friday Morning Update

There's not much changed with Madeleine this morning. She's been weaned a little bit off the morphine but she's at a fairly low level and they don't want to wean any further until her incision stops hurting-- when the nurses touch near the incision, she winces a little bit. Madeleine's also on very low ventilator settings but the nurses don't want to extubate until they're certain that she is stable. Right now, the only area of any concern is her blood pressure. Yesterday, Madeleine "rebounded" a little bit from her morning progress and her blood pressure and levels of dopamine continues to fluctuate from a high of 11 to low of about 8. Its not entirely certain why this is occuring but right now, the nurses/doctors just want to hold the course and expect that she will stablize on her own. Since we're still less than 72 hours from surgery, the dopamine levels, from a large picture, are quite low and there is really no concern at this time. If she's still fluctuating like this early next week, then the doctors will be more concerned.

That's it for right now. Cross your fingers for a boring and stable day for Madeleine!

Continued Improvement

All,

I'm at work but wanted to put out another post showing how well Madeleine is doing. Here are the stats:

- The infection is on the run. Her white blood count is down to 30 (from 45) yesterday and further evidence (the doctor called them "bands") show that the infection as a whole is definitely decreasing.
- The ostomy is working as Madeleine continues to have output into the bag-- about 3-4 cc's every three hours. This isn't huge but it is more than she used to get out of the bag, and she's not eating right now. As far as eating is concerned, the surgeons cleared her to eat today-- the typical time frame is 7-10 days. The neonatologists think this is way too agressive-- we're inclined to agree-- but her output indicates that feeding isn't far off.
- Her blood pressure remains stable and Madeleine continues to be weaned from dopamine. At last check, she was at 5 on the high concentration. The doctors were debating just pulling the dopamine or switching her to a low concentration and weaning all the way to 1. The high concentration doesn't go any lower than 5.)
- The ventilator is at low settings and Madeleine appears capable of breathing without it. The doctors may choose to keep her on the ventilator for another day just to be safe. The main concern is that the ventilator makes sure that Madeleine breathes deeply. Without the vent, the concern may be that any remaining pain from her belly may cause her to breathe shallower than she normally would. Regardless of when she is weaned, she is breathing over the vent (faster than the vent settings) and this bodes well for when they do remove the tube.

That's all for right now. Kirsten and I are of two minds. First, we are extremely encouraged by Madeleine's recovery and feel that Madeleine's strength is absolutely astonishing. The fact that she's had two major surgeries in a week and has fought off a major infection is awesome. At the same time, given all of the ups and downs of the past few weeks, we're trying not to get too far ahead of ourselves. Simply put: we're as happy as can be right now but we're still taking it one day at a time. At some point over the weekend, we hope that Madeleine can begin feeding again and at that point, we'll start to set some benchmarks for her.

That's all for now-- please keep the prayers and support going-- they're obviously helping. Thanks,

Brent and Kirsten

A Much Better Day

Its a quick post as I'm tired but want to get out an update. Madeleine has had a much better day. Here's the evidence:

- She has slowly been weaned from dopamine throughout the day-- at 8PM, she was moved to 8, from a high last night of 20. What is particularly encouraging is that she hasn't wavered at all today. Unlike after the surgery on Friday when she constantly moved up and down, she's just slowly moved down all day-- a sign that she's stable and winning the fight against infection.
- She has been weaned on the ventilator to room air. The doctors feel like they could wean further but want to wait for a day or two to ensure she is comfortable before weaning further from the vent.
- She has output in the ostomy-- quite a bit of output. In the past 24 hours, she's had over 15 cc's of output. That's more than she ever got in a 24 hour period with the previous ostomy and she's not even eating right now.
- Her white blood cell count was 45 today. that's high but not as high as it was after the last surgery (60). We hope to see progress tomorrow morning when the next results come in.

That's all-- as you can see, its been a steady and good day. We hope for the same tomorrow. Thanks again to everyone for your support.

Brent and Kirsten

Crazy Day

So much for the "boring routine." About an hour after posting my previous entry, Kirsten called with bad news from the hospital. A morning X-Ray showed "free air" in the belly indicative of a perferation of the intestinal wall. This is an extremely serious problem and the doctors agreed that immediate surgery was the answer. As the surgeons expected after reviewing the X-Ray, the intestine that was connected in last Friday's surgery came undone. Thankfully, they don't think it was undone for a lengthy period of time-- no more than 12 hours-- and a limited amount of stool was able to escape into the intestinal chamber. Since Madeleine was extremely frail during the surgery, rather than reattach the intestine, the doctors chose to create a new stoma and closed off the rectum-- just like her first NEC surgery. At this point, Madeleine is resting well and we expect to have a very difficult 24-48 hours. The doctors have told us to expect her infection to rise again, similar to last Saturday and we know that maintaining her blood pressure will be the key to success.

Needless to say, we're pretty emotionally whipped right now as we weren't expecting such a surgery. Additionally, this is a clear step back in Madeleine's recovery. At this point, our focus is on simply getting through the next 48 hours and then we'll start to re-focus on Madeleine's recovery path. The surgeons did hint that before any further reattachment surgery is discussed, they will want to see Madeleine feed and grow. They indicated that part of this recovery period may include addressing her heart's surgical needs before reattaching the ostomy. We're not sure if that is the ultimate path for recovery and right now, we're just glad that she's resting peacefully.

That's all for now. Once we get through these next two days, someone please remind me not to complain about boring days....