Cautiously Going Great

Sorry for the lack of updates yesterday (especially to the grandparents). Kirsten and I just emotionally crashed yesterday-- in a good way-- and didn't realize many folks were as concerned. (Of course, you weren't getting the good updates from the hospital.)

Before I get into all of the nitty-gritty details, allow me one sports metaphor. (If you know me, you know how odd it is that this is my first extended sports metaphor on the blog.) Kirsten and I feel like coaches of an underdog football team playing the number one team in the nation. Our team (Madeleine) has just played a perfect first half-- we simply couldn't have played any better. While the coach of any such team is ecstatic at the first half, they are also extremely cautious to celebrate and/or relax because they know how devastating one play in the second half can be. If I extrapolate this admittedly simplistic metaphor, Madeleine's playing her guts out and simply couldn't have had a better first 24 hours and we're ecstatic. We're not expecting any Hail Mary's from the other side but we're definitely keeping our heads down and worrying about every last detail.

Okay, with the coach in me satisfied, here are the nitty-gritty details:

1) We spoke with Dr. Jonas in the afternoon a few hours after surgery and he reiterated that all of the negative surgical issues had been avoided. They're honestly too long to list out so just take our word for it-- surgery went great.

2) Madeleine has hardly needed blood pressure support. After her previous three surgeries, this was a major problem as the doctors administered "pressers" to keep her blood pressure at a stable level. This time around, they tried giving her dopamine-- a common presser-- but had to stop as her blood pressure was too high. This is great news and bodes well for her recovery.

3) Madeliene-- as expected-- has been intubated (on a ventilator) since the surgery and has been reliant on high levels of oxygen. This was somewhat surprising to us as this has not been an issue following the past three surgeries. However, the doctors and nurses assured us that this is common following a bypass surgery. Furthermore, we learned that Madeleine has done great this morning and the doctors/nurses think that she could be extubated as early as this afternoon. This is REALLY great news as we expected her to be intubated for many more days.

4) Infection: This is the major hurdle left for Madeleine and it isn't likely to be an issue in the next few days. Dr. Jonas explained that his concern for infection isn't in the first few days. Instead, he is concerned about the proximity of the ostomy site to the heart incision and the potential for infection in 4-5 days. While this is a cause for concern, even if she does get an infection, it shouldn't be in the "potentially fatal" category. Instead, it would more than likely just slow down Madeleine's recovery. We can't explain how nice it is to hear a doctor say (and I'm paraphrasing) "Something bad might happen but if it does, it wouldn't be life threatening."

Those are the major issues we're facing right now and we hope that you can see how great everything is going while appreciating how scary this situation is. Kirsten and I are feeling good and we're admittedly reserving some of this good-will until we feel completely out of the woods. Rest assured, we're confident that we will be celebrating in the not too distant future and, if you know us well, you know we won't hold our emotions in check for long.

Kirsten just brought up one other point worth mentioning. For the heart surgery, Madeleine was transferred out of the NICU to the Cardiac ICU (CICU) and we're struggling with some communication challenges. We're not unhappy with the CICU folks at all and we feel like they're doing a great job. However, we know pretty much everyone in the NICU at Children's and the relationships we established allowed us to communicate more effectively. (The NICU folks are also a little more touchy-feely-- as one might expect.) The CICU folks have been great at answering all of our questions-- and we ask a lot of them-- but we're still learning who can best provide answers to specific questions and we're learning how to read the various nurses assigned to Madeleine.

That's all for now. We're headed up to the hospital right now so that we can meet with Madeleine's doctors and-- hopefully-- witness Madeleine's extubation. Keep your prayers coming and your fingers crossed.

Kirsten and Brent

Successful Surgery

We just finished speaking with the surgeon and he was very pleased with the surgery. We were warned about many possible complications and, at this point, we've avoided all of them. I'm typing on my blackberry right now so I'll wait until later to provide all the gory details. The main concern for the next 24 hours is keeping her free of infection and maintaining blood pressure. Taht's all for now. Kirsten and I are cautiously elated by this out come and we're trying to relax a little bit. Thanks to everyone for your support and prayers.

Brent and Kirsten

Surgery Tomorrow Morning (Tuesday)

Yes, you read that correctly. Madeleine is scheduled for heart surgery tomorrow morning at 7:30AM. We were fairly surprised by this news but we learned that Dr. Jonas-- the top heart surgeon in the area-- has an opening in his schedule tomorrow and then is booked for two weeks. (He is going out of town on Wednesday and his following week is bookd up.) After weighing the pros and cons we decided that there is very little, if any, benefit for waiting for surgery-- Madeleine's weight has actually decreased slightly the past week-- a clear indication that heart surgery is necessary-- and by waiting, we really couldn't expect to se any appreciable gain. On the flip side, by waiting, we also run the risk of Madeleine getting an infection and delaying surgery further.

Taking all of this into account, this was a fairly easy decision to make. Make no mistake about it: this is major surgery and with it, there come some serious riks. However, we feel confident that Madeleine will come through surgery stronger than ever and we look forward to providing a positive response tomorrow night. With that being said, we've been told that the first 24 hours post-surgery are often times more difficult than the surgery itself.

In short: we're nervous about the surgery and all of the potential challenges but confident in Madeleine's ultimate success and future health. Please keep Madeleine in your thoughts/prayers tomorrow. Thanks again for your support.

Brent and Kirsten

A Great Weekend

I haven't thrown the "great" word around much but this weekend definitely qualifies. Kirsten and I were able to get away for the weekend as we left Saturday morning for Ocean City and had a relaxing weekend of staring at and listening to the ocean and reading. More importantly, while we were relaxing, Madeleine was steadily improving and Kirsten's parents were working like dervishes on our house-- Steve mowed the lawn while Carol weeded all of our borders. When they werent' working, they were up playing with Madeleine and had a great weekend.

In terms of Madeleine's health, things are going quite well. She continued feeding on breastmilk and the doctors increased her feeds twice. First, they increased her frequency to 2 cc's every three hours and then increased to 3 cc's/feed. Throughout, Madeleine continues to process the food well and the ostomy appears to be working very well. We're not sure how much more they are going to push her to feed as they want her to be eating but don't want to push her too much before surgery. As far as her heart surgery is concerned, we hope to find out tonight when the surgery will be scheduled. We've been to expect that Madeleine will be transferred to the Cardiac ICU (CICU) tomorrow and surgery could be as early as Thursday. We'll update the blog with the date as soon as we have more information.

That's all for now. Thanks for checking in with us.

Brent and Kirsten

Friday update

Not much has changed with Madeleine-- she was resting calmly this morning when I visited with her and she's taken a liking (make that an infatuation) with her pacifier. (pics will be posted later) Whenever the pacifier fell out (frequently), she voiced her disapproval. Suffice it to say: the nurses are spoiling my daughter right now.

Other than that, we're just hoping for a very boring weekend. Madeleine continues to feed on the pedia-lite and the doctors may consider introducing breastmilk some time over the weekend. Other than that, we're not expecting any other changes as the goal is to keep Madeleine calm and healthy in advance of the heart surgery. We'll find out on Monday evening when the surgery will occur-- as early as next Thursday/Friday or early the following week.

Kirsten and I are going to take a short break from the hospital-- we're headed to Ocean City tomorrow morning for a day at the beach and a night at a hotel. Carol and Steve (Kirsten's parents) are taking over hospital duties for the weekend and also have the joy of taking care of our two monsters, Grady and Savannah. :) We'll be back in full parent mode on Sunday night for bath time and I'll post pictures and ideally a movie on Monday morning. (To help out with your "case of the Mondays.")

That's all. Have a safe and enjoyable weekend.

B & K

2nd Opinion on the Heart

Kirsten and I spoke earlier with another cardiologist regarding Madeleine's heart and other health challenges. We specifically chose the doctor that first diagnosed Madeleine's condition (in utero) for three reasons: first, he saw Madeleine in utero and in her first week of life and was familiar with her heart condition. Second, he hasn't been involved since Madeleine was transferred to Children's so while he's informed on her condition, he's impartal when it comes to her current care plan. Finally, he came across as extremely conservative when we first discussed plans for surgery and, if anyone would express reservations about the plan for surgery in the next 1-2 weeks, we'd expect him to take such a stance.

With all of this in mind, Dr. Telep listened to our story and then unequivocally agreed with the plan for surgery. He explained that while it is ideal to wait for a child to grow before operating on the heart, Madeleine's limited growth demonstrates the need for surgery. Additionally, he agreed that, once fixed, her repaired heart will help her deal with her GI issues and should also improve her overall development and growth.

Kirsten and I were relieved to know that, while Madeleine's care plan isn't ideal, we feel like surgery is the best course of action and we're doing everything we can to advocate on our behalf. We're still scared by the surgery, but we've always known she needed it and we are excited for the days when we are worried about her other health challenges.

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

quick update

There's not much change today with Madeleine's medical status. She battled some high heart rates and breathing issues last night and its not entirely clear why. Its probably a combination of her coming off the morphine, being uncomfortable, and struggling with her heart issue. Regardless, after receiving a small amount of morphine this morning at 4AM, she has rested peacefully all day and is breathing at a very low rate. She is on a higher canula setting (they actually switched her to the vapo-therm canula) but this isn't cause for concern-- they're just keeping her comfortable. Additionally, the doctors started feeding yesterday afternoon with a very small amount of pedia-lite-- essentially water with electrolytes. They decided to use Pedia-lite instead of formula or breast milk as they wanted to see how she reacted. After a day of feeding, she appears to be doing well and the doctors are just taking a very slow approach to feeding. They will get a new X-Ray each day and will continue to assess before switching to feeding with breast milk. As stated yesterday, they are in no rush as their goal is "do no harm" right now.

In terms of heart surgery, we're still planning to have surgery in the next few weeks and expect to hear about the exact date for surgery on Monday. While we await this date, we have contacted an external cardiologist to get a second opinion regarding the planned surgery. We don't disagree with the planned course of action. Instead, we just want to make sure that this makes sense as we weigh this very difficult decision.

That's all as far as medical updates are concerned. Here's just a few more specific thank you's and comments:

- Thanks to Mary Kay Rau and Liz Singley for joinging us on the March this past weekend. They braved the nasty weather and we are really appreciative.

- Congratulations to the Kessel family-- our neighbors in West Virginia. Judy had successful back surgery next weekend. FYI-- our goal is to take Madeleine to John Henry Days as our late "Kick-off to summer."

- Thanks again to everyone else for all of your support. We can't say this enough-- your support humbles us and we're eternally grateful.

Have a great day,

Brent and Kirsten