A Great Night

Kirsten and I finally got to spend a night with our daughter last night. It wasn't in our ideal setting-- we were still in the hospital-- but it was really great. I know I posted last week that the overnight stay was scheduled for Monday night (tonight), but on Friday evening, another family requested the room for Monday night and we were able to move to this past night. Overall, the night was quite uneventful-- we bathed and weighed Madeleine at 9PM and also changed her colostomy bag-- our first time doing it alone. After the 9PM feeding, we held her for a while and then put her to sleep around 10:30. Madeleine was fully willing to sleep all night long-- a dream for most parents but not so much for us as she has to eat every three hours-- she needs to gain some weight. Outside of changing and feeding Madeleine every three hours, the rest of the night was pretty great. I was able to get a few hours of sleep-- Kirsten didn't sleep nearly as well. Its definitely going to be a challenge but its a challenge that all parents must face.

During the day time, Madeleine is doing great with bottle feeding-- she has taken the last two full feeds from the bottle from Kirsten today-- 50cc's. At night, she is just so worn out from the day time that she doesn't seem to recognize the need to feed and we end up putting the formula through her feeding tube. We think that as she continues to grow, she'll figure out the feeding during the night time and we'll be able to remove the feeding tube.

Overall, we feel quite confident that she will be released on Wednesday. She's still struggling a bit with breathing-- she's tachypnic every once in a while-- but it seems to be improving and we don't think it will set us back.

That's all for now. We'll let you know if anything further develops and hope to post a picture of Madeleine on Wednesday as she is leaving the NICU.

Brent and Kirsten

A Plan to Go Home

You read that correctly, we've put a plan in place. Before I offer the details, Kirsten and I wanted to send a thank you to all of my co-workers at Treasury. Everyone at work has been extremely supportive of our situation and has allowed me tremendous flexibility with my schedule. On top of all that support, they also held a really nice shower for us yesterday afternoon. Knowing that Kirsten and I are big baseball fans, they ensured that Madeleine's first baseball outfit will be a Nationals outfit-- sorry to the Grandpas that support the Tigers and Yankees respectively. Again, Kirsten and I are humbled by the support we continue to receive and can't say enough thank yous!

Now, here are the details that I've been waiting to write for nearly four months: The doctors have established Madeleine's homecoming date as next Wednesday, July 2. Here are the details:

- Madeleine has reached full feeds of 47 cc's every three hours. She is processing the food very well and we're just hoping that she won't run into any issues in the next 6 days.

- Bottle feeding continues to slowly improve. Since Madeleine hasn't fully mastered bottle feeding, we're bringing her home with a feeding tube. This has been expected for a while and we think that within a few weeks, we can improve feeding and get her feeding exclusively from the bottle.

- Breathing: This is the biggest hurdle that Madeleine faces in meeting her time frame of next Wednesday. We were surprised a little over a week ago when Madeleine started to struggle with breathing. She has had some problems "de-satting" and has also been intermittently tachypnic (breathing fast). We talked extensively with her doctors and nurses and learned that tachypnea is caused by one of three factors: infection, cardiac troubles, and Bronchopulmonary Dysplasia (BPD). Madeleine doesn't have an infection and they did an echocardiagram on Tuesday that confirmed no troubles with the heart. Therefore, they confirmed that Madeleine has BPD-- basically, she has premature lungs that need to develop further. They started her a few days ago on nebulizers-- essentially asthma treatments-- and her breathing is steadily improving. She's still on breathing support and will likely come home with some form of oxygen support. The good news is that they believe her BPD is 100% correctable and we're thinking that oxygen support will only be needed for the first few months.

Assuming that Madeleine continues progress on the breathing and meets her feeding goals, our plan is to spend next Monday night in the NICU-- they have a parent's apartment for practice nights. We'll have all of the equipment that we'll be using at home and the nurses will leave us alone unless we request their assistance. We feel pretty confident in treating Madeleine's different issues but its nice to have a practice run at 3AM. Its a little different when you can't think and/or see straight.

In any case, if you're a frequent reader of this blog you know full well about the best laid plans.... We're not getting our hopes up too high (yet) but we'd be lying if we weren't a little excited. Have a great day.

Brent and Kirsten

Continued Progress

The steady climb continues. In addition to the great weight gain from last night and continued progress with feeding, she's slowly getting her breathing under control. We're still a little confused by the cause of the breathing issues but Madeleine is slowly being weaned and everything seems to be going well. She's still slightly tachypnic (breathing fast) but not as bad as last week and we're hoping that this will continue to dissipate. We have a family meeting scheduled with her doctors tomorrow where we'll discuss the different medical issues that Kirsten and I will need to administer when Madeleine's home. This includes:

1) Feeding through the bottle and tube. We've already been trained on placing the tube and feeding through it. We'll get more practice but know that, at least in the short run, we'll do some of the feeding through the feeding tube.

2) Breathing support: Its likely that Madeleine will have some breathing support when she comes home. We're going to discuss tomorrow how long this support should continue and what warning signs we can look for at home. This is the big mystery area for Kirsten and I as we're not entirely certain what is the cause of her current breathing issues.

3) Ostomy care: We've already been trained on how to empty the colostomy bag and we'll get more practice in replacing the bags-- they need to be changed every couple of days.

4) Monitors: We're not sure if they're going to send her home with any monitors. This is another topic for discussion during tomorrow's family meeting.

5) Medicine: Madeliene is currently on a diuretic (laseks) but we're not sure if they will send her home with this medicine. Additionally, she is getting a medicine for her reflux (Prevasid) that we'll need to give once daily. That's the only medicine she is currently receiving. There has been discussion of possibly administering a steroid to help out her lung development but no decision has been made.

I typed out the list to get it straight in my head and while it seems like a lot, for the most part, we're just hoping to get her home so that we can watch her grow. If all goes according to plan, she'll be big enough in about two months for the re-attachment surgery and when she is finished with that surgery, all of the issues above should be resolved.

That's all for now. Keep your fingers crossed and prayers coming-- the next few days are pretty critical in our plan for getting her home next week. Thanks,

Brent and Kirsten

PS-- I'm posting this information with trepidation as it seems that every time I post good news and/or a plan for coming home, everything falls apart...

A Good Weekend and Plan for the Week

Madeliene has continued her steady improvement over the weekend. Here are the quick stats:
- Weight: 2.58 kgs (5 lbs 11 oz.) We're finally seeing some significant weight gains each week.
- Feeding Volume: Madeleine is now getting 37 cc's ever 3 hours and there are no signs of dumping at this point. If all continues as planned, Madeleine will be at her projected full feed of 42 cc's by Tuesday.
- Breathing: For the past week, Madeliene has struggled with some breathing issues and the cause hasn't been clear. Over the weekend, the doctors decided to switch Madeleine to a high flow nasal canula with the added benefit that the air flow would be 100% humidified. The assumption was that Madeleine's nasal passage was congested and the additional humidity would help her out. With this in mind, the goal is to reduce the amount of oxygen that Madeleine is getting and she is very close to being back to room air. Over the next few days, we'll hope that she can remain on room air and the flow can be weaned.
- Bottle feeding: While Madeleine has had no digestion issues related to food, she is very inconsistent with bottle feeding. Some of these issues can be directly attributed to her breathing struggles and some is probably related to the fact that different nurses are feedig her each day. At this point, the doctors have agreed that Madeleine will likely be sent home with a feeding tube and we'll use the tube to supplement feeding with the goal of bottle feeding as much as possible.

In short, the path home is pretty clear. Our plan is:

1) Reach and tolerate full feeds by Tuesday. Once the doctors are convinced that dumping is unlikely, they'll remove her PIC line (IV). We're hoping the PIC line can be removed by this Friday, Jne 27th.
2) WEan breathing support. Its possible that we can bring Madeleine home on breathing support but we'd prefer that it isn't full-time. We'll monitor her breathing over the next few days and will report back what the plan is for her breathing.

That's about it. If we can get to full feeds and wean breathing support, the doctors hope to let us go sometime near the end of June. There are obviously a ton of challenges that we'll need to overcome this week but we're hopeful that we're close to getting home. Once we get her home, we'll still need to improve her bottle feeding and will also have to plan for her re-attachment surgery once she reaches 5 kgs (11 lbs). Nevertheless, we're hopeful that we're getting closer to getting her home. Thanks again for everyone's support.

Brent and Kirsten

Better Day

After a number of frustrating days, Kirsten and I finally feel like the roller coaster is headed in the right direction again. Madeleine is doing very well with the slowly increasing feeds and she's slowly improving with her bottle feedings-- of her 8 feeds yesterday, she took 4 of them completely from the bottle. We expect that its going to take a few more weeks until she uses the bottle all the time but we're fairly confident that she's headed in the right direction. Additionally-- and perhaps more importantly-- it looks like her intestines are processing the food effectively. There was concern last week that she was "dumping" meaning that food was essentially passing through the gut without being absorbed. This can cause immediate dehydration issues and long-term impedes one's ability to grow effectively. We're hoping that by slowly increasing feeds, Madeleine won't have further dumping problems.

In addition to the improved news with the feeding, we also feel better about her breathing issues. Madeleine is still on a nasal canula and is getting some oxygen-- last check it was 30%. (room air is 21% oxygen.) The reason for the breathing support and oxygen is that madeleine has been breathing fast (intermittent tachypnea) and has also desaturated a few times-- meaning she stops breathing effectively or for the less medically inclined-- she starts turning blue. (we all love the smurfs but its not cool.) What has been really frustrating is that desatting and thakypnea are problems that affect premature babies but since her heart surgery, Madeleine has had no problems until recently. This morning, we think we finally determined the cause-- her sinuses are plugged with a lot of fluid and need frequent suctioning. The cause isn't entirely clear-- it isn't infection-- but now the doctors know what to focus on and we're hoping that it will either clear up on her own-- completely possible-- or the doctors can find an effective way to eliminate the problem.

Assuming that this breathing issue gets resolved in the next week and Madeleine doesn't have any feeding problems over the weekend, our scheduled path home is as follows:

1) Reach full feeds on 6/24. Bottle feed as much as possible.
2) Take out PIC line, Friday 6/27.
3) Remove breathing support-- NLT next Friday, 6/27.
4) Have a boring, safe, growing weekend in hospital-- 6/28-6/29
5) Go home with bewildered parents on 6/30.

If you've read any other posts on our blog, you'll know that the timeline above is extremely tentative and we're very likely to deviate from it. However, we're crossing our fingers and hoping that things continue to trend in the right direction.

That's all on our end. Have a great weekend.

Brent and Kirsten

Elation and Frustration

The elation part of the post relates to the fact that Kirsten and I are Aunt and Uncle to baby twins-- Blake and Ella Bushey. They're both doing well-- as far as we've heard-- and we're excited for my brother Brian and his wife Erica.

While we're ecstatic for them and the healthy birth, we're getting a bit frustrated with Madeleine as she's continuing to struggle with her breathing. Thankfully, feeding is going well and it appears that the "take it slow" strategy of increasing 5 cc's ever two days is working. At the same time, we're pretty confused by Madeleine's sudden struggles with breathing. Since her birth, Madeleine has had relatively few breathing episodes. Prior to heart surgery she breathed faster than the doctors wanted but that could be attributed directly to her heart. Furthermore, while she was on different forms of breathing support, it was never chronic and she usually was weaned quite easily. At over three months of age, we didn't expect her to develop breathing issues and we're confused by the fact that she's breathing fast again and periodically having problems with her saturation levels. At this point, it doesn't appear to be anything major-- they have her on nasal canula and can easily correct any breathing struggles but we're frustrated as the doctors can't explain why we're having these struggles at this point in the game. The not knowing is worse, in many ways than much more serious conditions.

In any case, that's the update for today. Assuming there won't be any explanation-- the doctors are hoping that Madeleine clears it up on her own-- it is our goal to report slow progress on the breathing front in the next few days while continuing to report improvement with feeding. Thanks again,

Brent and Kirsten

Up and Down

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

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

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

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

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

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

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

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

Brent and Kirsten

Quick morning update

Not much has changed this morning. Kirsten is at the hospital as she wanted to try and feed Madeleine at 9AM this morning. I haven't gotten an update yet but the goal is to get her to take as much as possible during each bottle feed. She's still pretty slow with the bottle but I could see a definite improvement in the three days that I was gone.

We're hoping that there won't be too much to update until the end of the weekend. At that point, we'll have a better idea of her progress with feeding and should have clearer timelines concerning when the PIC line will be removed and when she might be ready to come home.

Its really strange to think about Madeleine coming home. Kirsten and I went into the nursery this morning and it really hasn't settled in that Madeleine is going to sleep in the room. Intuitively, we know that she's coming home but the reality just hasn't settled in. It promises to be an exciting but very challenging venture...

That's all for now-- check out the small number of new pictures on Picasa-- http://picasaweb.google.com/brentbushey/. Take care,

Brent

Getting Closer

This is the posting that we've been waiting to send out for quite some time. We're getting closer to getting Madeleine home. I'm typing this on my blackberry while I stare at Madeleine so this posting may be a bit disjointed. However, Kirsten met with Madeleine's surgeon and neonatologist and they laid out the plan for getting Madeleine home. Here are the main steps:

1) Re-attachment surgery is going to be delayed until Madeleine weighs around 4-5 kilos (10 lbs). By waiting, it should enable Madeleine to grow and she'll be much better prepared to have surgery as the typical waiting period reduces from around three weeks to four to five days. We'll have to deal with the colostomy bag in the interim but that's not such a big deal.

2) Madeleine needs to eat. They are increasing feeds by 5 cc's every 24 hours and she'll reach full feeds of 40 cc's every 3 hours on Monday afternoon. They try feeding Madeleine through a bottle every time and she is getting markedly better with the bottle.

3) Finish antibiotics and get the PIC line out. Madeleine should be finished some time in the next week. The PIC line will come out once everyone is convinced that she won't need further antibiotics and/or nutrition through the IV. Our goal is to get it out by next Friday.

In terms of when she can come home,we're shooting for the end of June. It is possible that she'll be ready earlier- the longest issue will likely be feeding and the earliest she could be home is late next week (highly unlikely). More than likely we're looking at around the 27th. Two weeks from Friday.

As always, this post comes with the caveat that all dates can change if Madeleine gets an infection. We're hopeful that this doesn't happen but we're pretty much prepared for anything.

That's all for now- I'll post pictures tomorrow morning and will type more when I'm in front of a real keyboard. Tonight- we're going to celebrate a bit asa it feels good to have a healthy kid...

Brent

Good Weekend

This is just a quick update as I'm in Norfolk at an IT conference (actually much more interesting than it sounds.) I spent the weekend with Madeleine as Kirsten got some much needed R&R on the beach in Fort Lauderdale. At first glance, it might sound like Kirsten won out but she didn't get to see Madeleine. For the first time in a while, Madeleine was back "on her game" this weekend. She started crying when her pacifier fell out, she started bottle feeding with mixed success, and she really wooed her father. Her coloring is back (pictures coming soon) and she is even growing-- small amounts but she's moving in the right direction again for the first time in a little over a week. Her weight is 2090 grams-- not certain but I think that is close to 4 lbs 10 oz. The only other development was that after a few unsuccessful tries, the nurses were able to install a PIC line. This ensures that Madeleine gets all of her medicine and supplemental IV nutrition in the most efficient and safe manner possible.

In terms of future plans, the doctors will start increasing feeds this week-- she spent the weekend getting 10cc's/feed. A "full feed" for her is around 35cc's ever three hours. In addition, we have a family meeting scheduled with the neonatologist and pediatric surgeon to discuss the best plan moving forward regarding the reattachment surgery. We hope to weigh the pros/cons of scheduling surgery in the short-term before bringing her home vs. bringing her home and scheduling the surgery at a later date. Kirsten and I are anxious to get all of the surgeries done and also to get Madeleine home but we're obviously most interested in pursuing the path that ensures Madeleine's short and long-term health. There is no easy answer but we expect that the doctors can weigh all of the available data allowing us to lay out the best path moving forward.

That's all for now. If I don't get time to post until Wednesday, don't worry. We're hoping to get back to the "boring days" in the NICU but we'll keep you posted of any news as it comes in. Thanks again for your support and interest.

Looking Good is Feeling Good

I don't have any pictures from this morning-- just was too busy talking and playing with Madeleine-- but for the first time in a week, Madeleine looks healthy. When she's sick, she is much more "floppy" and is just kinda out of it. Today, she seemed a little more with it and just felt normal. That look corresponds with the data that we have as a morning X-Ray showed that her intestines are back to operating normally. We expect feeding to begin later today-- they're still waiting for one surgeon to weigh in before finalizing the feeding amount-- but so far, everything seems to be going very well.

In addition to feeding Madeleine, we expect that her nasal canula will be removed and I'll try to take pictures after work. I don't like pictures with the canula as there is so much on her face. The only major area of concern for today is getting a central line into her. Madeleine is currently getting her antibiotics and nutrition through a normal IV line. The problem with IVs-- especially with babies-- is that they tend to fail after a few days and the doctors want something more permanent in the event that they have to give Madeleine food or medicine. Previously, Madeliene had a PIC line in her left arm that extended to her heart. This line lasted about 11 weeks but failed on Monday. The nurse practitioner was able to get a new PIC line in on Monday but it failed on Wednesday and since Wednesday, they've just been using the normal IV. Today, they'll try again to insert a PIC line. If this fails, they've raised the possibility of inserting a broveac (sp?). This is a surgical procedure where a line is inserted into the heart. It was briefly explained to me this morning and the nurse practitioner assured me that it is fairly common and safe but with the events of earlier this week, we're wary of any new procedures and hope that the efforts to insert a central line prove fruitful.

Other than that, our goal for the next few days is to get Madeleine feeding as quickly as possible and to start fattening her up. We don't have any plans for surgery at this time and really, won't do much for at least a week-- probably closer to two weeks-- until we can see how she is growing and developing.

That's all-- have a good day.

Brent and Kirsten

Better Information Today

Kirsten and I met with the surgeon that ordered the contrast study yesterday and I spent the morning meeting with more doctors and nurses this morning and we learned a great deal. Our first question focused on why the contrast study was conducted. The surgeon ordered the study yesterday to ensure that, in advance of any surgery, they identify any possible problems in the rectum. No problems were expected in such a short length of bowel but given Madeleine's complicated history they simply wanted to make sure that everything was healthy and no challenges would pop up during or after surgery. The surgeon also explained that he entered the order yesterday morning expecting that Madeleine wouldn't be taken down to the radiology lab until at least the afternoon. Typically, there is a long line for the radiology lab and the fellow thought he would have more time to talk with the radiologist in question. Unfortunately, the lab had an opening and Madeleine was taken down late yesterday morning before the surgeon had a chance to explain Madeleine's case to the radiologist. The surgeon explained that in most cases with babies with surgical NEC, the small intestines is primarily affected by the infection and therefore, the contrast study is ordered to examine the large intestines. Therefore, a large tube is inserted into the anus and the large intestines are filled with contrast fluid. In Madeleine's case, there are no large intestines and the insertion of the tube caused the end of the rectum to perferate. When the contrast fluid was pumped into Madeleine, some of this fluid escaped through the hole into her abdomen. Kirsten and I were obviously concerned with this communication failure and we discussed at length with the surgeon as well as Madeleine's nurse practitioner the need to be more attentive to Madeleine's special needs. This message apparently got through last night as I was swamped with doctors and nurses stopping by Madeleine's crib this morning to discuss her case and determine next steps.

In addition to learning what happened during the procedure, the surgeon also raised the issue of when the re-attachment surgery should be conducted. While acknowledging that a mistake was made, he did say that he would not typically expect the rectum to perferate even given the mistake and this may indicate that Madeleine needs to grow and improve her nutritional standing before scheduling the re-attachment surgery. In fact, we think this mistake could turn out to be a blessing in disguise as the worst possible situation would be to have complications arise from re-attaching the intestines too soon.

In the immediate future, surgery is not being discussed as the most important issue is to ensure that Madeleine overcomes her existing infection and avoids any further complications/infections. So far, things are looking good as her lab work came back today and her numbers are trending in the right direction. In the next few days, the doctors hope to also begin feeding Madeleine and they are going to focus primarily on getting her as nutritionally sound as possible. The plan right now is to re-assess where we are in two weeks and then determine any further surgical plans. Our hope is that Madeleine will begin to feed soon and will begin working on bottle feeding again. In two weeks, we'd hope she is near full feeds (getting all of her nutrition from breastmilk/formula) and is improving with her use of the bottle. If we reach that point in two weeks, we'll then ask the question "should we schedule the re-attachment surgery or should we take her home with the ostomy and re-attach at a later date?" If we choose to bring her home with the ostomy, we'll establish benchmarks for when the final re-attachment surgery should be scheduled. We definitely plan on having the intestines re-attached, we just need to determine if it makes sense to do while she's still in the hospital or if we should bring her home and schedule the surgery down the road once she's reached a more stable weight, etc.

In short, we're still frustrated and disappointed but our anger, for the most part, has subsided. We'll continue to closely monitor Madeleine's health but we're not going to take an aggressive stance with surgery. Instead, we want her to do the things that 3 month old babies should do: feed, sleep, cry, etc. and we'll figure out when to "hook her back up" once we know that she's stable and the surgery makes sense.

Thanks again for everyone's support-- we're continuously amazed by the outpouring of support we receive. Madeleine will get over this bump and we hope to one day look back at June 4th as just a small bump in the road.

Take care,

Brent and Kirsten

Another Bump in the Road

I'm going to ramble in this post as I'm just trying to get my thoughts together so let me be clear-- Madeleine hit a bump in the road today but she is okay and we're hopeful that there are no long-term consequences. With that out of the way, here's what happened and what I think about it.

Today, the surgeons requested that Madeleine have a contrast study done in preparation for her re-attachment surgery. This is a fairly common procedure that is done prior to re-attaching the intestines as it allows the doctors to see if there are any problems with the bowel before surgery. The procedure starts off with injecting contrast fluid into the bowel and then an X-Ray is taken to see if there are any areas that are blocked, strictured, or otherwise damaged/restricting. Madeleine had this procedure done one time before so we were familiar with the procedure. However, rather than injecting the fluid into her small intestines above the ostomy site, they instead wanted to inject fluid into the remaining rectum area below the ostomy site. For those that don't remember, Madeleine lost her large intestines in surgery from complications related to Necrotizing Enterocolitis (NEC) and only the small intestines and rectum remains. My understanding is that her existing rectum is about 1 cm long, so there's not too much down there. Still, the surgeons decided to inject this area with contrast fluid to see if any complications for surgery could be identified in advance.

The test didn't identify any problems but acutally caused some problems as the rectum area was perforated during the procedure and contrast fluid leaked into her abdomen cavity. The cause of the perferation isn't clear and it is hoped that the perferated area will heal itself. In the short run, the main concern is infection. The fluid itself is harmless and can be absorbed by the body-- it is water soluble. Still, as with any opening in the body, there is a concern that bacteria entered the abdomen cavity and they have added a third antibiotic to Madeleine's care to provide general coverage. Moving forward, the plan is to wait two weeks allowing the area to heal and the antibiotics to eliminate any infection. After this two week waiting period, the surgeons intend to re-attach Madeleine's intestines. In the meantime, the surgeons hope that Madeleine will begin feeding again.

If this issue only relates in a two week delay (it actually only amounts to a one week delay as surgery would have likely taken place late next week), we will be relieved and it won't make that big of a difference. At the same time, Kirsten and I are really frustrated by this latest setback and we're dealing with a wave of emotions. In no random order, they are:

1) Frustration that I didn't ask more questions about the procedure. The surgeons recommended it and while it seemed strange to me-- there's not much to examine in a 1cm piece of rectum-- I didn't push the issue.

2) Anger that my daughter was hurt. As any parent can attest, you hurt as bad or worse when your kid is hurt. When your kid weighs 4 lbs, I can't tell you how angry it makes me when I hear that she's in pain. I know the intention to hurt her wasn't there but it is really maddening to know that Madeleine is in pain and we can't do anything about it.

3) Frustration with the surgeons. For the first time, I feel like someone at Children's made a big mistake. I don't want to blow it out of proportion but I feel the need to communicate my frustration/anger/disappointment in a manner that ensures, as best as possible, that another mistake is not made. I need to ask more questions but I really wonder how necessary the procedure was. Additionally, I feel like the perferation was caused by a mistake. I don't know this for certain-- and probably never will-- but I'm definitely frustrated by the situation.

4) Worry that something else will go wrong. We keep thinking that all of the bad things have happened and that Madeleine is on the road to recovery and then.... this happens. There's a voice in my head wondering "what's next?"

5) Disappointment that we have to wait longer. Along with the worry, this is the other big issue. I know its just a week delay (hopefully) but I'm getting tired of visiting my daughter in the hospital. I can rationalize all I want about knowing that she's in a good hospital and where she needs to be, etc. but at the end of the day, I just want her home. When I wake up in the middle of the night, I don't want to call and ask someone how she's doing. I want to go into the nursery and check on her myself. Simply put: I'm ready to be a dad and any delay is frustrating.

Alright-- that's enough rambling on my end. I needed to get all of that typed out so that I can talk with her primary doctor this afternoon without blowing my top...

We'll report back when we know more about any other effects (hopefully none) of this setback. Right now, our hope is that she addresses her previous infection (not much has changed since yesterday) and can get back on the road to recovery including feeding and removal of her breathing support (she's on minimal settings right now). Two weeks from now, I hope to report on a successful reattachment surgery and lay out the final steps that will lead to her release from the hospital.

That's all-- thanks for your support and interest.

Brent

Still Fighting Infection

Madeleine seems to be slowly getting over her infection. When I held her this morning, she was a little tired/groggy but for the most part she seems to be getting better. She had a fever last night that got high enough that they gave her some tylenol and that seemed to control it pretty well. She hasn't had any further problems with a fever so that's the best we know right now.

As far as surgery is concerned, we expect to hear tomorrow on the proposed date. We're not expecting a huge delay in the surgery as Madeleine seems to be doing quite well so we'll let you know what we hear tomorrow.

Other than that, things seem to be going pretty well, just a little slow. Have a good one.

Brent

Improved Health but Delayed Surgery

Madeleine fought her infection all weekend long and they finally were able to determine the type of bacteria that she is fighting. Blood cultures revealed that she is fighting a bacteria commonly found in the intestines and it is likely that the ostomy site was the source of the infection. Once the bug was identified, the doctors were able to shift her antibiotics to target it more effectively and we're hoping that by tomorrow most of her lab work shows a declining infection. While this is all good news, since the bacteria originated in the intestines, the surgeons have decided to delay surgery. We don't have a new date yet as the NICU doctors need to discuss the plan with the surgeons. At this time, they are taking daily cultures of Madeleine's blood and they hope to get two days in a row of negative cultures. Once they've had two days in a row, they intend to keep Madeleine on antibiotics for an additional 10 days. Its not clear if the surgeons will wait until the full ten days or if they'll go in once all lab work shows that the infection is under control. At this time, we're assuming that it is likely she'll have surgery around the end of next week-- June 13th.

As far as feeding is concerned, Madeleine is currently getting all of her nutrition via the IV as her intestines show some signs of the infection-- an X-Ray showed that her intestines aren't doing much right now. (Remember the term ileus?) They'll take X-Rays every two or three days and once the X-Rays show an improved picture, they'll consider starting her back with feeds.

As you can see from the picture, Madeleine is back on breathing support and will probably remain on it for at least the next few days. She was moved to a high flow nasal canula over the weekend as she had some hard mucus secretions in her nose (aka boogies) that were making it difficult for her to breathe. The high flow provides more humidity and helps break up the boogies, allowing her to breathe easier. They'll probably keep her on this for a few days before they try to wean.

In short, we're a little frustrated that the surgery will be delayed but we're happy that the doctors know what bug they're fighting and pleased that they're confident that they can treat the infection effectively. We hope to have a better idea of when the surgery will take place in the next days. Thanks again for your support.

Kirsten and Brent

PS-- the picture was taken on Saturday. Despite fighting an infection and weighing 4 lbs, 8 oz, Madeleine still was able to lift her head and even pushed up a bit while laying on her chest... small victories... See more new pictures in the may album at http://picasaweb.google.com/brentbushey.