Progress and drama

Madeleine spent all day at the hospital and her doctors were extremely pleased with her progress. She weighed in at a whoppign 12 lbs 2 oz, meaning that she's gained over 2 lbs in the last three weeks. For those keeping score at home, our goal is 2 lbs every month-- yup, we finally beat a weight gain goal!


That's the best news but the other news is also good. We learned that the pulmonary hypertension was slightly elevated (nothing major-- about 35 %-- should be 25-20%). The doctors weren't concerned and in fact thought it made sense as they hadn't increased her medicine dosages despite her growth spurt. They readjusted the medicine and we think we'll see a decrease in the percentage next time we go back. Madeleine met with the team of GI doctors and they were also pleased with the weight gain. It was their first time seeing Madeleine (weird isn't it?) and they did stress that its important we continue this weight gain and also really amp up on the physical therapy. It sounds strange but makes sense: as Madeleine gains core body strength, her GI tract will strengthen and will function more effectively. We've been doing some activities but haven't pushed Madeleine ... until now. Coach Bushey (that would be me) is on the scene and Ms. Madeleine's going to be in two a-days for the foreseeable future. I expect the Dr. will be amazed by the progress she'll see in a month.


Also-- I want to post a few pictures. Per Will's request, the first two are for comparison's sake-- the first is a picture taken during Madeleine's first week of life. If you remember, my wedding ring fit loosely on her wrist. The second picture was taken this morning and its a good demonstration of Madeleine's growth. The final picture demonstrates that Madeleiene knows which basketball team is going to be ready for March Madness... :) Even if you're not a Spartan fan, you gotta admit-- that's a great smile! Check out all of the January pictures at this link.

One more quick note-- as the title indicates, there was some drama associated with the hospital visit. In addition to meeting with three different doctors yesterday, Madeleine also made a trip to the X-Ray lab to replace her feeding tube. Her last tube had come out of her intestines and was placing food directly into her stomach. Since they're not convinced that madeleine can keep food in her stomach and protect her airway, they wanted to replace the tube. The tube was placed easily late Wednesday and didn't appear to have any problems. However, when they got home yesterday, the feeding pump couldn't push food through the tube. We called the hospital and at first were told that nothing could be done last night but since Madeleine can't go without food or liquid for a full night, we needed to bring her to the ER for admittance into the Cardiac ICU. (Madeleine has to go to the ICU when admitted due to her Pulmonary Hypertension and the fact she is on a ventilator.) If you know my wife, you know that she doesn't always take the first answer she gets when she disagrees (and she had my full support on this issue.) She ended up finally reaching a Fellow in the radiology lab and convinced him that it made more sense to place the tube last night rather than admit a perfectly healthy but medically fragile patient to an ICU because a tube needed to be fixed. It ended up taking about five minutes last night and the fellow was able to move the tube and get rid of a kink in the line (they use X-Ray to see the line.) We were obviously ecstatic to avoid the ER and ICU last night.

That's all. Madeleine has a few more appointments tomorrow so I'll provide updates once we get more information. Take care,

Brent

Growing and Rolling Over

Just a quick post today to let you know that Madeleine is slowly learning how to roll over. Its a bit more difficult with a trach but she's getting it. We're a bit afraid of what will happen when she gets really good at it as I imagine we'll be undoing some rather interesting knots. In addition to rolling over and remaining the happiest baby alive, she's also growing like a weed. I'm going to start taking pictures of her next to a prop so the growth is evident but last night I was amazed-- it wasn't the same child that I saw before I left for work. We'll have more data to report tomorrow when Madeleine goes to the doctor and is weighed but we're ecstatic that she's moving in the right direction.

Great Weekend

We spent the weekend at home (kind of a given with Madeleine right now) and had a great time with her. We tried taking lots of pictures and I've posted some of the best to our picasa site. Here's my favorite from the weekend:

That face pretty much sums up our weekend-- Madeleine was happy and we were too. For more pictures, follow this link.

That's all for now. We hope to have more good news to report this week as Madeleine goes back to the hospital on Wednesday for a number of appointments. Other than that, we're just glad to be settling into a new routine. Normal parenthood is tiring and busy but its also a lot of fun and we hope it continues.

A Really Good Week

The subject posting applies to pretty much everything this week: Madeleine, politics, and even my health. Everything is going great. Since this blog is about Madeleine, lets focus on that: She's doing great. I just created a January folder of pictures and will post more this weekend. Here's my favorite:



Despite the strange formatting, you can see that Madeleine looks great. (Its not a bad looking family, if I do say so myself.) Here's the best part: this was taken over a week and a half ago and Madeleine has continued to make huge strides. The change that we're witnessing is truly remarkable and Kirsten and I simply can't put into words how nice it feels.

We're afraid to get too confident as Madeleine still faces many medical challenges. She still has Pulmonary Hypertension, she's still breathing with a ventilator, she still has to have a surgery to re-attach her intestines, she is still feeding from a tube.... the list could go on. However, we finally feel like we've reached the bottom and while we face many challenges, we know that Madeleine has already been through much worse. Here's a few more reasons for confidence:
- She weighed in at the pediatrician's yesterday at 11lbs 10 oz. Madeleine goes back to Children's for five different appointments next week (just check-ups) and we're hoping she tops the scale at 12 lbs.
- Perhaps the best news is this: when Madeleine was admitted on New Year's Eve, the doctors ordered an echocardiagram to see if her pulmonary hypertension was acting up. Instead of identifying a problem, the test showed that Madeleine's pulmonary hypertension was fully medically managed. In English: her pressures were the same as yours and mine. This is great news as it shows that her pulmonary hypertension is responding to the drug treatment. She's not technically cured becaused she's still on two PH drugs but the PH is under control and we can hope that as her lungs develop, we might be able to wean Madeleine off the medicine.

Again-- we have a long ways to go, but this week we're not focused on that. Instead, we're ecstatic that our little girl continues to do great and smiles at us whenever we walk in the room. Thanks-- have a great weekend.

Brent and Kirsten

PS- look for inauguration pictures soon. We ended up on Pennsylvania Ave in front of the White House. President Obama and Michelle walked right in front of us. A great day!

Different Kind of Drama

Sorry for the lack of posts-- can't believe it has been 8 days-- but I have a good excuse as I was hospitalized for five days. That's right-- I was in the hospital, not my daughter. (Side note, if our house burns down, our insurance company had better have a good alibi.)

Here's my quick story: I developed a heart arrhythmia issue over the summer and despite my doctor's best efforts, they weren't able to solve it. Instead, they put me on daily medication and all appeared to be under control... until last Friday morning when my pulse inexplicably topped 200 beats/minute. (FYI- a normal adult pulse is around 50-70 bpm.) I ignored the racing heart and associated pain for about two hours-- I had lots of work to do-- but I ended up at GW hospital in downtown DC. My heart proved more resistant than most as it failed to respond to the common techniques (vegel, massage of the carotid artery, flexing, etc.) for slowing it down and it also failed to respond to many different drugs including a wonderful drug, adenosine, that stops your heart for a second. (yeah, that doesn't feel so good) After repeated tries (I remember about 6 doses) with adenosine, the doctors decided to shock me with the difibrillator. I wasn't fully sedated the first two times they shocked me and I can tell you that getting shocked is not a lot of fun. Thankfully, my heart finally stopped on its own right as we reached the four hour mark of racing. I did experience a few more episodes in the next few hours but none as substantial as the first.

As you might expect, this heart trouble landed me in the hospital over the weekend. I went into a heart catheter lab on Monday and thankfully, the doctors were able to fix my heart issue-- they think. (certainty is fleeting when it comes to medical issues in the Bushey family.) I was released on Tuesday on no medications with no diet restrictions and while I'm still a bit tired, I haven't had any heart issues and hope that remains the case.

You're hear to read about Madeleine-- not my crazy health issues-- and all I can report is good news. Madeleine continues to grow, is healthy, and she's happy as can be. I have some pictures at home and plan on taking a bunch more this weekend-- I'll post ASAP. Rest assured, she's doing great and Kirsten and I couldn't be happier. We're hoping that this string of health continues for her and we look forward to week in the near future where none of us ventures into a medical facility.

That's all on our end. Kirsten and I scored tickets to the Treasury building for the inauguration so we're headed down there and expect to have a good time on Tuesday. We might not have a great view but we'll be warm inside with access to indoor plumbing. You can't ask for much more, can you? Have a great weekend!

Brent and Kirsten

A Good Week

I really need to get some pictures up as you may not recognize Madeleine soon-- she's growing like a weed. Here's one example of her growth-- the following picture was taken on Christmas morning:



You can see the light blue strap around her waist-- we use that to keep the ventilator tube from moving too much. If we don't put this on, Madeleine frequently disconnects herself from the ventilator. Its not dangerous as you just have to pop it back on (like a lego) but it can be a nuisance. In any case, you can see that the two ends overlap quite a bit in the picture. I'll try to get a picture tonight as it is likely one of the last few days that the strap will fit around her-- it hardly fits now as we use a piece of velcro to hold the two ends together-- they don't touch.

It is starting to feel like we're hitting the growth stride that we've wanted to hit for so long. Madeleine is still struggling a little bit from an oxygen standpoint-- she's running a fever from vaccination shots yesterday and we've had to increase the amount of oxygen she is receiving. Still, she looks great and is happy, when she's awake. With all of her recent growth, she's been doing a lot of sleeping.

That's about it on our end-- we've been really stable and relaxed this week and it feels really good. We're slowly settling into a routine with nursing-- our hours get cut back starting next week so we'll be taking over some more duties. There are definitely some tiring days ahead but so long as Madeleine continues growing, you won't hear any complaints out of us.

Have a good one.

Brent

She's Home and is Doing Great

As we expected last week, Madeleine's stay at Children's was short-lived. With the support of additional oxygen and a medicine that thins out mucus, she was able to overcome the cold pretty quickly and came home yesterday (Sunday). She looks great and so far is doing great. That's all for now-- we're both crazy busy at work and while busy, its nice to be able to focus on work knowing that Madeleine is doing well. I hope the New Year is going as well for everyone else.

Brent

Back at Children's

This information is a little old but just an FYI-- Madeleine was re-admitted back to the CICU on New Year's Eve. It really isn't anything serious but as I mentioned in my last post, she has been fighting a cold for the better part of a week and we finally got to the point where she needed more oxygen support than we can provide at home.

Since being admitted on Wednesday, Madeleine is already showing signs of improvement and the attending doctor hopes to release her over the weekend. We were shocked by such an option as the doctors always told us that discharges had to take place during the week. However, their willingness to release her over the weekend is based on the fact that we have nursing services set up and this is clearly a case where Madeleine needs extra support.

As you might expect, we're upset that we had to take her back to the hospital but we're heartened by her quick recovery and we hope that we'll get her home and keep her healthy for a long time. I'll post more once we're certain of when she's coming home. Take care,

Brent