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....

Slow Improvement

It looks like we're back on the "boring day" routine. I'll be honest-- I was able to handle boring a lot better a few weeks ago. That being said, I'll accept boring over many of the alternatives. Here's a quick update: Kirsten is with Madeleine this morning and things are slowly improving. She has been weaned a little off the dopamine-- she's gotten as low as 8 and is currently at 10. She is fluctuating quite a bit and I believe this is due to the relatively high level of infection. Speaking of the infection, her lab results just came in and her white blood count is at 38-- a slight decrease from yesterday. All in all, it appears that Madeleine is winning the fight against the infection, albeit very slowly.

There's one more bit of good news: an abdominal scan was conducted last night and it didn't reveal any "hot spots" for infection. As you may recall, there was some concern that something was left inside during surgery last Friday and could result in a large infection. This does not appear to be the case. Instead, it just appears that Madeleine has a pretty major infection and she's slowly winning the fight.

That's all for now. I'll be at the hospital this evening and I hope to establish some timelines for weaning from the dopamine and the vent. I'm sure they'll just be preliminary timeframes but this is important for me-- I want to know that we're making progress and getting closer to the point where she can begin eating again and begin behaving more like a normal newborn baby that just needs to grow. I know we're getting close... just not as fast I'd like.

Have a great day everyone.

Brent and Kirsten

Better News

Madeleine is still struggling with her blood pressure (dopamine is now at 14), but we learned some good news this afternoon. An echocardiagram revealed that the blood clot in Madeleine's heart has disapeared. There is still evidence of where the clot was located (I guess just a small bump) but the cardiologists believe that the majority of the clot was simply absorbed back into Madeleine's blood stream. This is great news as there was always a concern that the blood clot could become infected or could take off and cause problems in the body. With this off the table, its just one less hurdle for Madeleine to negotiate.

Other than that, Madeleine is still fighting to keep her blood pressure up and this is likely evidence that she is still fighting the infection. We'll get more information about the infection tomorrow when another CBC (blood test) is conducted. Until then, our hope is simply to keep her stable and hope that she can keep her blood pressure up and even wean a bit off the dopamine. As far as her breathing is concerned, they've weaned Madeleine completely off oxygen-- she's just breathing room air through the ventilator. The doctors won't consider weaning any further until she is done with the dopamine. They'll also keep Madeleine on a small morphine drip to keep her comfortable with the tube in her mouth.

In short: the only goal we have right now is to keep her blood pressure up and get her off dopamine. When this happens, we can be fairly confident that the infection is done.

Make sense? Thanks again for your concern and support.

Brent and Kirsten

Infection Ups and Downs

After successful surgery on Friday, Madeleine has been fighting the ups and downs of infection. Its hard to understand how serious the infection is because, to a certain extent, the Doctors expected Madeleine to get worse after surgery. We knew going in that infection was an issue as Madeleine was fighting the infection for two days prior to surgery and the goal of the surgery was to reattach the ostomy, thereby eliminating the likely cause of infection. Since the surgeons disturbed the infected area around the ostomy, it makes sense that Madeleine got sicker following the surgery and that is exactly what has happened. On Saturday morning, Madeleine was very sick-- her white blood count was high (60), she was fighting an infection, and she was also struggling to maintain her blood pressure. To address the blood pressure, the doctors increased her level of dopamine to 20 (the highest level possible) and also administered epinephrine (pure adrenaline). The epinephrine was started at .1 and was increased to .23 (the highest level allowed is 1.0). In addition to the blood pressure, the doctors also used tylenol to decrease Madeleine's temperature.

Fortunately, beginning on Saturday evening, Madeleine began to stabilize allowing the nurses to wean the dopamine and epinephrine. Since early Sunday morning, Madeleine has been completely free of epinephrine and her levels of dopamine have been lowered and is hovering around 11-- she's been as low as 9 and had one spike on Sunday night. The spike occurred last night and the nurses increased her level to 20 and were prepared to administer epinephrine when Madeleine stabilized. Its not entirely clear what caused this drop in blood pressure but shortly beforehand, Madeleine had an episode with the ventilator where she couldn't breathe. The nurses immediately addressed the situation and realized that a piece of mucus was blocking the air tube. The nurses cleared the tube and Madeleine resumed normal breathing. We can't be certain, but it is possible that the trauma caused from the breathing incident led to the drop in blood pressure. In terms of the infection, labs on Madeleine's blood show that her white blood cell count is still elevated but it has decreased to a 39 today-- it was 40 on Sunday after being in the 60s on Saturday.

I guess I'm just rambling a bit, trying to provide a sense of what is going on so let me summarize where we stand. First, Madeleine is stable but is struggling with an infection post-surgery. The surgery itself was a success but given her struggles with infection, Madeleine is reliant on blood pressure medicine to keep her stable. In the next few days, the Doctors will continue to fight her infection while hoping to slowly wean her off the blood pressure medicine and from the ventilator. Kirsten and I are a little scared but mostly, frustrated with the ups and downs of the NICU. We know that progress in the NICU is typically followed by a few steps back... we're just hopeful that Madeleine gets over the infection sooner rather than later.

That's all for now. We'll provide further updates as they come in. Right now, we don't have a time frame for recovery-- the doctors are content to watch Madeleine and let her body tell them when she is ready to be weaned.

Brent and Kirsten

PS-- Thanks again for everyone's support. We've raised yet again our goal for the March-- we've now raised $2,475! We're amazed by everyone's generosity and look forward to walking this coming Sunday. Let us know if you're in the area and want to walk with us.

Success!

I'm typing this through teary eyes-- I do fine getting through surgery but post-surgery, I fall to pieces. No worries-- Kirsten and the four grandparents are doing great so I don't have much to worry about. Madeleine came through surgery like a trooper. She is in the NICU getting cleaned up right now but the surgeon spoke with us and was very happy with the outcome of the surgery. As we hoped, the intestines were only blocked at the ostomy and the surgeons simply clipped the end off and reattached the intestines to the rectum. This is great news because there was no guarantee that all of the intestines were intact-- we're obviously overjoyed. Additionally, the surgeon commented that Madeleine's rectum is long-- this will help long term as it will help with her ability to absorb water.

The immediate concern will be on eliminating any remaining infection. We've been told that the former ostomy site is likely to be infected (it may already be infected with all of the stool leaking in that area prior to surgery. Nevertheless, the infection should be localized and Madeleine is already on antibiotics that will help eliminate any remaining infection. Once we get past the infection concerns, we'll wait for her bowels to become active again. As with everything, timeframes are difficult to establish but we'll hope that within a week, Madeleine stools at least a little bit. The nurses will also focus on weaning her back off the vent and off of dopamine-- she's on a low level drip (I don't know the amount.) All in all, there are plenty of obstacles/challenges but this really feels like we've cleared a major hurdle... and despite the tears, it feels really good.

We'd be remiss if we didn't thank everyone for their tremendous support. We continue to be floored by all those that have expressed concern and have prayed for Madeleine's full recovery in the NICU. We simply can't thank you enough for this support. Please know how humbled we've been throughout these difficult weeks.

Please have a great weekend-- we're going to see Madeleine and once we're convinced she's stable, we're going to get out and enjoy the weather. It is absolutely beautiful outside.

Take care,

Brent and Kirsten

Update from the Past 24 Hours

The past 24 hours has been difficult-- sorry for the lack of an update. I'll list out all of the difficult information etc. but will first say up front that everything is looking alright at the moment. With that in mind, here's the gritty details:


1) Surgery: Madeleine is going to have surgery tomorrow morning. We spoke with Madeleiene's surgeons yesterday and again today and they believe that Madeleine's ostomy (the end of the intestines hanging out of her stomach) is forming a stricture or blockage that is severely limiting her ability to expell waste from her gut. It is possible that there are other strictures inside but they don't see any evidence and feel that fixing the ostomy will enable Madeleine to eat and improve dramatically. Fixing the ostomy is a surgical procedure and the doctors believe that Madeleine is stable enough to handle the full re-attachment surgery. The other option is to fix the ostomy-- essentially open her up, pull out a little more intestine and cut off the end that is causing a problem-- but once she is open, they prefer to re-attach the intestine instead of waiting a few weeks to perform a second surgical procedure. There are obvious risks for any surgery but the doctors seem quite confident that Madeleine can handle the surgery and they feel that, once she makes it through the recovery period, this could accelerate her feeding and overall improvement in the NICU.


2) Infection: Madeleine's nurse yesterday morning was suspicious of infection as she just wasn't behaving the same. (It was the nurse's third day in a row of having Madeleine-- continuity of care is a GREAT thing.) Given her changed condition, the nurse ordered a blood analysis (CBC) and it showed evidence of infection (heightened white blood cell count and CRP-- may not be the right term.) Infection is a constant concern in the NICU (any ICU for that matter) but by catching it early, it looks like the worst of the infection was stopped yesterday by hitting Madeleine with a dose of three antibiotics (Venc, Gent, and something else-- I'm putting these medical terms in for those in the industry.) Madeleine's nurses took additional blood this morning and all of her numbers have improved. There is still evidence of infection so we're not out of the woods yet but we're moving in the right direction.

3) General intestinal nastiness: The stricture/blockage finally reached a breaking point yesterday and Madeleine starting backing stuff back up into her stomach and even out the side of the ostomy. In short: she was filled up with stuff and her body decided to get rid of it through any means possible. Her stomach filled up with nasty green stuff (looked like ground up seaweed) and they're now pumping it out continuously. Initially, we were extremely concerned that this was caused by a re-occurence of NEC-- this would be the worst possible scenario-- but the doctors didn't share our concern and follow-up X-Rays showed no evidence of NEC. For now, the assumption is that the infection is under control and her body is just clearing itself of all the nastiness. (that's a technical term)

All in all, its been a rough 24 hours but we're feeling confident about the surgery and are cautiously optimistic that the surgery will serve as a major turning point in Madeleine's recovery. We're meeting this afternoon in a "family meeting" with Madeleine's cardiologist and neonatologist to review plans for the surgery and to also discuss post-operative recovery and plans for Madeleiene's heart. In short, we're just trying to get a better handle on all of the issues affecting Madeleine's health. Its complicated and difficult but we're doing well (we actually slept well last night) and we really appreciate everyone's support. (On a related note: we've increased the March of Dimes goal to $2500 as we are poised to blow by the $2000 goal).

That's all for now. We'll provide another update once we know more-- if you don't see another posting before tomorrow, expect to see a celebratory post tomorrow afternoon post-surgery. Thanks,

Kirsten and Brent

Rick and Kay Wherabouts

My mom asked me to post to say that they are staying here in DC through the planned surgery on Friday. They expected to drive back today but given the uncertainty surrounding the surgery, they'd prefer to stay and we're glad to have them... under certain conditions. We've provided a full list of chores including yard work and cooking. So far, they're doing okay. :)

If you need to reach them, they both have their cell phones but Kay said that her granddaughter is more important than work so she might not return every message in a timely fashion.

That's all- have a good one.

Not Much to Update... for now

I'm posting right now to let you know that we're still waiting to learn more from the surgeons and others concerning the surgery. Kirsten waited yesterday to talk with a surgeon but the surgeon didn't show up. Our assumption is that the surgeon was stuck in surgery longer than expected. (we'll give them the benefit of the doubt.) I'm going to be at the hospital today for rounds and will definitely get our questions answered. We still intend to hold a "team meeting" with the surgeons, cardiologists, and neonatologists as this should allow us to draft a plan for the surgery as well as her post-operation recovery. At this point, we're cautiously optimistic that this surgery could serve as a turning point and could help accelerate her recovery. That being said, this is serious stuff and we have a lot to learn. I'll write more once we learn some more information.

Brent

PS-- Madeleine was weighed last night and she is now 1610 grams (3 lbs, 9 oz.) This continued growth is great as it shows that she is gaining weight despite not getting much nutrition from milk (The IV feed is good but not as efficient as regular eating). Madeleine is also resting well-- all signs that are in her favor as we prep for surgery on Friday.

Change of Plans

The NICU roller coaster took a different curve today. We don't have all the answers yet but last night, Madeleine struggled quite a bit with residual feeding. They would feed her and then before the next feed, they'd suck out her stomach and each time, residuals remained. The good part of the story is that the residuals were clear and showed signs of digestion. If the residuals were yellow or green, this would indicate a potential infection and would be cause for great concern. Instead, the clear residuals appear to indicate that very little is getting through her intestines. (Another related sign is that she has had very little output into the ostomy over the past few days.) The surgeons examined Madeleine this morning and they believe that the cause of this problem is an obstruction at the ostomy (the part of the bowel that sticks out of the gut.) In the past they've tried dilating the ostomy with very little improvement. Still, they are convinced this is the problem and have reccomended that the intestines be reattached this Friday. This news has caught Kirsten and I by surprise and we have a number of questions. I'll list them out right now and will post answers once we've spoken with the surgeons:

1) Why do the surgeons believe the ostomy is the cause of the backup? Could there be another problem (ileus) that is leading to low output?
2) What is the risk of doing the reattachment surgery right now? (Typically, this surgery is scheduled 6-8 weeks after surgery and Madeleine is only at 4 weeks.)
3) What are the risks for waiting on surgery and hoping the ileus/ostomy/gut resolve the issue on their own. (Why are we deviating from this course when this was the course that most have preferred in the past few weeks?)
4) What is a typical recovery period for the reattachment surgery?
5) What if the surgery doesn't solve the problem? Does this put us in a better or worse position to address any other issues?

As you can see, we have a lot of questions about the surgery and we're hoping to get some clarity soon. Regardless of the answers to these immediate questions, we plan on having a meeting with Madeleine's neonatal attending doctor, her cardiologists, and the surgeons as we want to be sure that everyone agrees this is the right decision at this time. While we're being very cautious right now, we're hopeful that this could serve as a major step forward. While we obviously have many concerns, we are optimistic that, should Madeleine have the surgery, she'll come out of it stronger than ever and, once feeds begin again, she may be further ahead than if we waited the traditional 6-8 weeks for surgery.

We'll post more as soon as we get more information from the Doctors. Thanks,

Brent and Kirsten

Succesful Weekend

Sorry for the lack of posts over the weekend-- we were busy with friends and family. I'm at work right now and don't have a camera so I'll just post a quick update right now. Madeleine continued on the slow and steady road to recovery this weekend. The primary focus continues to be on her feeding and the doctors increased her feeds to 3 cc's/hour. This is still quite small and the doctors are trying to determine if Madeleine can handle additional food. They are somewhat reluctant as her X-Rays continue to show signs of low motility/ileus functions and while she has some output, it is lower than the doctors would like. On the other hand, Madeleine has not had trouble with residuals in her stomach indicating that she may be capable of eating aditional food. this line of thinking would surmise that the slow bowel may be caused by the slow feeds. In past instances, the doctors have preferred to take a slow and steady approach and I don't see that changing in any dramatic manner.

That's the major issue as other factors continue to look good: Madeleine had an echocardiagram last week and the heart remains unchanged-- there are no signs of failure and the clot/thrombis is slowly decreasing in size. Additionally, Madeleine continues to gain weight-- she weighed 1590 grams (3 lbs 8 oz.) last night. Other than that, she looks good and seems to be getting healthier and larger every day.

That's all for now. I'll try to post some more pictures tonight and will provide any further updates at that time.

New Clothes, New Food, New Video

All,

So far, Madeleine is continuing her string of good days. (Kirsten and I think she can catch Dimaggio's streak.) I just got off the phone with the nurses and they have doubled the amount of food she is getting to 2 cc's per hour. They are going to wait until tomorrow before deciding to increase it further. This is still a small amount but is yet another step forward.

As you can see in the picture, Madeleine is in new clothes and we've posted a new video of her in the new clothes. I know the videos aren't the most exciting but dont' worry, Madeleine and I are working a new back flip for a soon to be released video :).

Have a great weekend everyone-- we'll provide additional information over the weekend as it becomes available.

Our Best News Yet

From the pictures associated with this post, I think you can see that Madeleine continues to improve. We took this picture last night as Madeleine was awake and alert for over half an hour-- by far the longest we've seen her alert. This was the first time where Kirsten and I felt really comfortable playing with Madeleine and she responded really well to our interactions tracking back and forth with her eyes and generally having a good time. Suffice it to say, we left the hospital floating.

I spent an hour this morning holding her at her bedside and her good mood continued as did good news from Madeleine's doctors. Madeleine continues to receive 1 cc of food/hour and has had no signs of residuals in her stomach (a very good sign.) Her overall comfort level and clinical appearance is further encouraging and the doctors are hoping to begin increasing food in the near future. They took an X-Ray this morning and they see some progress. They are going to take another X-Ray tomorrow morning to be safe and if it comes back positive, they'll begin increasing her food tomorrow afternoon. The goal is to continue feeds every three hours and every 12 hours (every 4th feeding), they will increase by 1 cc. The ultimate goal is to get her feeding enough where they can remove her IV-- at her current weight, she would need to eat 25cc's of breastmilk every three hours to allow them to remove the IV. We've been warned that we're still weeks away (at best) from such a scenario, but we feel great that we're trending in that direction.

We're currently awaiting results of an echocardiagram taken yesterday on Madeleine's heart. This echo should provide additional information regarding the blood clot/thrombis in her heart and should also let us know how well she is handing her AV Canal issue (the missing central valve in her heart.) We're hoping that the X-Ray will indicate that the clot is slowly decreasing in size. If not, when Madeleine has heart surgery on the AV canal, the surgeon will most likely remove the clot at the same time. (the clot is located in the same area as the missing valve.) As far as the canal itself, the echo should alert us to any potential signs of distress. While it is always possible that the heart could begin to cause trouble, Madeleine's continued growth and positive signs indicate that this is unlikely. There is no doubt that Madeleine will eventually need heart surgery, but as time goes by and Madeleine continues to improve, it is increasingly likely that this surgery won't be scheduled until months down the road.

You may be trying to piece together a calendar of prospective dates, so let me try and lay one out for you. (NICU Disclaimer: Dates are all tentative and can be expected to change at a minutes notice.)

- Begin Feed Increases: Friday, April 11.

- Reach full feed level of 25cc's every three hours: May 2 (this is agressive)

- Reattachment surgery: May 30th. (This is a wild guess).

- Recovery from surgery and Madeleine prepared to come home: July 4th (another wild guess)

- Heart Surgery: Sometime after October 1, 2008.

Again, these dates are extremely tentative but it may help you see what we're up against. Kirsten and I have settled into a fairly standard routine and while it is time consuming, we're really enjoying the time we spend with our daughter. We'd obviously prefer to have her home but in the end, we just want to be happy parents with a happy and healthy baby. In some ways, we're already there and we're steadily headed toward a full time arrangement and we really can't ask for much more.

That's all on the medical updates. Please check back for more (hopefully) good news tomorrow afternoon. Also, check out our snapfish site for additional pictures of Madeleine. (If you can't tell, I'm the annoying father at the hospital that won't stop taking pictures.) In case you forget, the site is: http://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378.

A New Movie

Everyone,

We've uploaded another video for everyone's viewing enjoyment. Please also see the new pictures-- we've posted a few on the right and more at our snapfish folder: http://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378. One of these days, we'll put some shorter albums together that we can post on the blog-- we just need to get some extra time. (If anyone has some time laying around, we could use some extra...)

As you can see from the video/pictures, Madeleine is doing quite well. The feeding is going slow, but we still have a fun time hanging out with her and we don't give the nurses too hard a time when we have to leave.

Have a good one.

Kirsten and Brent

Still Going Good

I'm hanging out with Madeleine this morning at the hospital and things continue to slowly improve. Yesterday, the doctors decided to double her feedings- she is now getting 1 cc of milk every 3 hours. It is still a very small amount but its a step in the right direction. So far, she hasn't had any residuals in her stomach so that is good. Output into her bag is low and there are three potential causes:
1) Her ostomy is blocked at the end- surgery continues to look at her and can dilate the ostomy if needed.
2) Her intestines are still slow- ileus symptoms.
3) She's not getting enough food to push stuff through.

At this point, there's no way of telling if any are truly problematic and the basic course is to watch Madeleine and feed her slowly. At times, the approach is frustrating-- I'm not the most patient of people-- but given the alternative, I'll take slow and boring every time.

That's all on the medical update. We stayed for bath night last night and that was a lot of fun. Kirsten "bathed" madeleine with a wash cloth and we got some great pictures of Madeleine with her eyes open. In true Brent form, I left the camera in the car this morning so I'll have to post pictures later tonight.

One final note- thanks again to everyone that has donated to March of Dimes. I've moved our goal to $2000- no worries if we fall short. We're amazed and humbled by everyone's support. If you're interested in monitoring progress, the link is under the top picture on the right. Have a great day.

Brent and Kirsten

Quick (but good) update

Kirsten pulled morning duty this morning so I don't have any pictures/video to report. I'm going to the hospital tonight and will either post pics/video tonight or tomorrow morning. On the medical front, we have good news to report. The Doctor (new attending Dr. is Dr. Scavo) ordered a test to determine if the intestinal ileus could be related to an infection. The test came back inconclusive last night and a new test was ordered this morning. Kirsten and I were a bit worried last night but the test came back with improved results and it appears that, at this time, there is no sign of infection. This is obviously good news and fits with the rest of her physical outlook-- she's comfortable, is still eating the small amount each day, and isn't displaying any other signs of infection (temperature, blood gasses, etc.) The Doctors will continue to monitor the results but right now, all looks good.

That's all as far as a medical update is concerned. A huge thank you goes out to all that have donated to the March of Dimes walk. I raised the goal again since we reached $1000 quite easily. Don't feel obligated to donate-- we just ask that you consider donating here if you'd like to provide support (the link is under the picture of Madeleine on the right). Thanks again-- have a great day.

B & K

Update from the Morning

I stopped by the hospital this morning and held Madeleine for about an hour. Last night was a good night for her-- Sunday night is bath night, so they bathed Madeleine and weighed her-- she gained weight again and now weighs 1410 grams (3.12 lbs). She continues to put on weight slowly and gradually and this is a very good sign as it indicates that, at least right now, the heart isn't causing any problems that would require early surgery. Its too early to state this definitively but, as I've written a number of times, the doctors would prefer to delay the heart surgery until she is larger and instead reattach her intestines before worrying about heart surgery.

In terms of feeding, Madeleine is continueing to get 1 cc of milk every 6 hours and they don't envision changing this for at least a few more days. This small amount isn't really providing much nutrition, instead, they consider this "entrophic" and the goal with such a small amount is to "prime the pump" and ensure that everything is working right before sending more food down. In terms of the ileus, they took another X-Ray this morning and it shows some signs of improvement but they still see some of the contrast fluid from last week as well as signs that the intestines aren't working that hard. In short, the intestines appear to be improving slowly and they're calling it an evolving ileus. They will probably wait until Wednesday for another X-Ray-- at this point, their focus is on observing Madeleine's behavior. If there are any signs of discomfort (hard or distended belly or residuals in her stomach), they'll shut down feeding immediately. However, at this point, she doesn't show any signs of discomfort and the hope is that she'll continue to trend in this direction.

That's all for now. I intended to post another video today but our camera battery wasn't charged-- I'll try to post one tomorrow. Have a good day.

Brent

A Good Weekend

We told Madeleine about the fundraising efforts for the March of Dimes and the picture on her right was her reaction. Actually, this was her reaction when we showed up at the hospital today-- seriously. She was asleep when we showed up at her bedside and when we raised the top to her incubator, she stretched out and then looked around with her eyes wide open.

As you can tell from the tone of this posting, Madeleine had a really good weekend. She continues to breathe well, her heart seems to be stable, and she began eating this weekend. The eating is the best news but it comes with the typical NICU warning: it is going to be very slow. Previously, she was eating 0.5 cc's/hour. This was considered conservative but is no where near as conservative as she is now getting 1 cc every six hours. (less than a teaspoon/day) The good news is that she has not had any residual milk in her stomach (they check before they feed) indicating that Madeleine's intestines may ge working again. They are taking an X-Ray tomorrow and with the contrast fluid still in her-- a small amount remains-- this should tell us how the intestines are doing. Madeleine also passed a milestone this weekend: she weighs 3 lbs! Yup, she's still tiny but she is slowly putting on weight which is yet another good sign.

With all of that good news to report, we were floored this evening when we checked the progress of fundraising on our March of Dimes site: www.marchforbabies.org/madeleineeva. Thanks to everyone that has donated already-- we're continually amazed by the support everyone has provided. We initially set a goal of $300 but we've already blown past that amount. The new goal is $1000. I don't know what is realistic, so if we beat that, we'll just raise the goal again. Thanks again for everyone's support.

We hope everyone has had as restful weekend as us and you're looking forward to the week and to hearing more news regarding Madeleine. Take care,

Kirsten and Brent

Moving On Up

Hey folks,

Madeleine is still at Children's (and will be for a long time) but she has been moved from the main NICU to the NICU's "Green Room." The green room is essentially the spill over area that is in use when the NICU needs extra room. Babies that are transferred to the Green Room are considered stable so this is very good news for Madeleiene. I'm busy at work so I won't bore you with all of the details, but the short story is as follows:

1) Madeleine received a blood transfusion on Wednesday and that has really helped her stabilize her breathing. Her color is improved and the doctors are hopeful that this will continue.
2) Madeleine is still not eating but the doctors, at this point, aren't concerned. The reason for holding feeds is that she hasn't cleared all of the contrast fluid inserted earlier this week. The surgeons were concerned that there was a blockage at the end of the stoma, so they dilated the stoma on Wednesday. This procedure helped as Madeleine has had some output in the bag but the doctors feel that her intestines aren't doing too much work right now-- they call this an ileus, or a temporary paralysis of the intestines. That description sounds bad, but the doctors aren't concerned as this is common following intestinal surgery. If it goes on too long (a week or two longer), they can consider prescribing medicine. However, at this point, they think a few more days of rest can't hurt Madeleine and are hopeful that once she begins feeding again, this won't be an issue.

That's all on the health front. We're cautiously optimistic that Madeleine is on a long, slow recovery road. She obviously has two major surgeries in front of her-- the intestinal reattachment and the heart surgery-- but right now, the focus is on keeping her stable, starting her feeding, and watching her grow.

One more quick note (don't worry, I'll be hounding you for the next few weeks): Kirsten and I have started a Team as part of the March of Dimes March for Babies on April 27. Our team site is http://marchforbabies.org/madeleineeva. We've set a goal of $300 for our team to contribute. In lieu of clothing, food, etc, we ask that you consider making a donation. (We're not ungrateful by your support. On the contrary we're extremely humbled by all your support and hoping to share it with others.) You're also welcome to walk with us-- the site has all the details.

Slow Progress

My financial planner (who also happens to be my father-in-law) is fond of a quote by Warren Buffet that goes something like this "good investing is boredom bordering on sloth and lethargy." I think one could use this quote to describe the best NICU experiences. In short, things are trending in the right direction, just slowly. Here are the details from rounds this morning:

1) Madeleine had a poor blood gas this morning which prompted the nurses to put her back on vapotherm at 3 liters. This seemed to help as a blood gas taken at noon was much improved. At this point, she'll stay at the 3 liters for at least a few days.

2) Despite her blood gas improving, she's still breathing a bit faster than the doctors want and they decided to give her some blood. They've debated doing this for days as it can help her with replacing blood taken for gasses and can also help out with oxygenation in the body. The downside is that they don't like to introduce foreign substances in any body unless necessary. Additionally, their is some concern about adding fluids with Madeleien's heart condition. To counteract the fluid problem, they are going to administer a diaretic immediately after the transfusion and they believe that this should help slow her breathing.

3) The intestines appear to be improving and they have a plan to ensure that they drain appropriately. I spoke with a surgeon and they are going to insert a straw (can't remember the fancy medical term) into the stoma (end of her intestine) that should help the intestines empty. If you remember, after the procedure two days ago, she had a large amount of output from the stoma but that has stopped and the X-Ray indicates that much of the fluid inserted into her intestines remains inside. By inserting the straw, they feel that this will allow the intestines to drain and should ensure that blockages don't occur in the future.

4) Given all of these ongoing issues, the plan is to see how she reacts this afternoon and most likely hold off feeding until tomorrow morning. There is a chance that the gut will empty quickly and they may decide to start tonight. However, echoing the sentiment at the beginning of this post, they don't want to go too fast...

Have a good one--

Brent

PS-- I gave blood this morning. Have you scheduled your appointment? The number for Children's blood donor site is 202-476-5437. They're open at 7AM so you can go before work. If you don't live in DC, check out your local hospital's website.

4/2 Update from Hospital

I'm sitting with Madeleine against me chest- this beats a cup of coffee in the morning bya country mile- and have a short update to provide. Madeleine had a little difficulty with her breathing last night- nothing too out of the ordinary but they took her blood gas this morning and they had some concerns. Again, nothing major but her blood was slighly acidic. The doctors believe that this resulted from ordinary breathing issues and possibly because they have limited the amount of fluid they are giving her. The fluid limitation is designed to help with her heart condition's tendency to over burden the lungs. In short- this isn't a major incident but until her blood gasses clear up, they'll hold off feeds. I'm waiting for rounds and will get a better idea of when the gas could clear up (potentially today). Additionally, they took an X-Ray of Madeleine and that should tell us if any intestinal issues remain. Since I haven't heard anything yet, my assumption is that this isn't an issue. So far, its a little bumpy day but the bumps don't seem major. Days like today just reinforce how important patience will be throughout Madeleine's stay in the NICU..

4/1 Good Update

We just heard back from the hospital regarding the surgeon's report and they don't see any issues with Madeleine's intestines. Right now, the plan is to give her the rest of the day to let her intestines clear out (stuff is still coming out.) Additionally, the doctor would prefer to give her another day as her intestines still show some dilations (the intestines look lumpy) and the hope is that an extra day will allow them to settle down. The hope is that feeding will start tomorrow. If that occurs, we're hoping that we have a slow, boring few weeks of basic feeding and watching her grow.

That's all for now. Enjoy the rest of the day-- we'll try to post some newer pictures in the next few days.

How You Can Help

As I've stated numerous times on the blog, Kirsten and I have been humbled by all of the offers for support that we've received and this isn't just a throw away statement. We've seriously been overwhelmed by the support and many times question how we're so lucky to have such a great network of family and friends. With that in mind, I'm looking to call in a few favors right now. I'm sitting in the NICU (yes, breaking the rules) as I type this posting and its finally dawning on me how you can best help. Here's a list of quick thoughts (please feel free to add additional ideas in the comments section):

1) Give blood. If you live in DC, the Children's hospital has a blood donor link on their website. If not or there is a more convenient site closer to your home/office, schedule an appointment right now and post a comment when you do it. There is always a need for blood in the medical community- Madeleine has used her fair share so consider this your way of paying it back.

2) Donate to the March of Dimes. They are doing great work here supporting families that truly need support. Your donation can help make a difference.

3) Take care of your own health. Kirsten and I love each and every one of you and selfishly, we don't want to be concerned with your health. If you've been putting something off (diet, work out), here's a way for you to help.

4) Support Barack Obama for President (sorry couldn't help myself).

I won't list any more ideas right now but I do ask that you take this post seriously (except for politics-- that one's entirely up to you). Kirsten and I take the concept of public service seriously and if Madeleine's health challenges can serve as a rallying point for small improvements, we would feel great.

Don't worry- we'll still be relying on you for meals and emotional support. However, there's only so many meals we can eat while there are so many other ways for folks to make a truly important contribution. Thanks,

Brent

4/1 bedside update

I'm typing this update while holding Madeleine. Don't worry mom- I'm holding her against my chest with one hand while typing with the other. This is very slow so I'll keep it short- we still haven't gotten an official result from yesterday's test but things appear to be better. As a reminder, the surgeons decided to do a test of the ostomy to determine why there wasn't much output. They took her down to the OR and injected the intestines with fluid. The fluid shows up in an exam allowing the doctors to identify any blockages or areas of concern. Since the surgeons haven't provided an update, the assumption is that there isn't a major problem. Supporting that theory, since coming back from the exam yesterday, Madeleine has had a large amount of output into her colostomy bag. It appears that a side benefit of the exam is that it can serve an enema like function

That's all for now. I'm waiting for the doctors for rounds and I expect to report that feeds will start again this afternoon.

Brent

PS- madeleine just opened her eyes. I'm not fluent in baby communication methods but I think she means to say, good morning and thanks for the support.