Sunday, August 29, 2010

Where to begin...

So much has happened this past week that I'm almost at a loss for where to begin! I'm tempted to jump right to our exciting Friday, but I guess I'll start at the beginning.

Monday was a very hard day. After 14 weeks at home with Miss Charley, it was time for me to go back to work. For those of you that don't know, right before my maternity leave started I accepted a new job with South Dakota State University. I will be considered a 50/50 employee and will be based out of the Avera Cancer Institute. Part of my time will be as a pharmacist in the clinic setting and part will be precepting pharmacy students on their 4th year clinical rotations and giving oncology related lectures to 3rd year students. Its a brand new position, so I'm excited to "build" it into a functioning practice site. A part of me was excited...ready to start my new job and to get back to being around adults, I was super sad to have to send Charley to daycare. Not only sad, but quite anxious as well. Monday and Tuesday were probably the hardest, but like everyone had told me, it got easier day by day. I'm proud to say that I only cried on Monday...haha...I was pretty impressed with myself! Everyone loves her there and we know that she is getting wonderful care.

Starting my new job, a majority of my first week was orientation. Unfortunately this meant daily trips to Brookings (about an hour away) and by Friday I was ready to not have to make the drive. Also, Friday marked a big day in our house. Charley was scheduled for a follow-up appointment with Dr. Sami and to have an echo. We haven't had an echo since we brought her home 2 months ago and as the day approached I got more and more anxious. We know that sooner or later she is going to grow out of her current shunt and have to go back for more surgery, but the thought of it ties my stomach in knots.

Dr. Sami's office has always been a very emotional place for me. The first time we went for a fetal echo I was terrified of what they were going to tell me about our little girls heart. It was only a day after we found out that something might be wrong, so we were still operating in shock mode. Since that first visit, every time we've had an echo I've left the office in tears. I wanted them to see a perfect beating heart. I wanted everything to be fixed and that was never the case. I cried again on Friday afternoon...but my tears were different this time. They were happy tears.

Before Charley had her first surgery, Matt and I had a long discussion with her surgeon where we were given a decision to make--

1. We could opt for the traditional surgical route where they would, over the course of a few years, bypass the whole right side of her heart.

2. We could take a little more "upfront risk" with a procedure to try and stimulate the right side of her heart to grow. This is a new school of thought in the management of these heart kiddos and is definitely accompanied with some risks. I think that both of us knew that we wanted to go with #2, after all, a whole heart is better than a 1/2 of one, but it was still an agonizing decision to make. No one likes to hear "increased, upfront risk" or that it could lower the odds of us getting to bring her home with us. In the end we chose this route and Charley tolerated surgery better than we ever could have expected!

This brings us back to Friday...

Charley's exam was pretty uneventful. She looks healthy, her blood pressure was right on target, she finally made it onto the growth chart in the 3rd percentile for weight and her O2 sats are still holding steady in the mid to upper 80's. Then it was echo time. This process takes a good hour to get all of the views of the heart that they need, most of which Charley sleeps through. I usually spend the first 10 minutes trying to figure out what we are seeing on the monitor before I just give up and wait for the explanation afterwards! Here is what we heard...

1. There appears to some growth of her right ventricle. Its still markedly smaller than the left side, but we knew that this would be a very gradual process if we were to even grow at all. We were thrilled to hear this. THRILLED.

2. During her 2nd surgery they put a patch where her pulmonary valve is supposed to be. This would let blood flow passively in and out of the right ventricle, encouraging it to stretch. On Friday's echo Dr. Sami saw that the ventricle was beginning to actively pump a small amount of blood. This is a good thing as it shows that she might not be 100% dependent on her shunt. Its still very little blood flow, but its progress and a step in the right direction.

Dr. Sami said that he didn't want to get ahead of himself, but that what he saw Friday afternoon was encouraging. He is going to share our echo results with our surgeon for feedback on how he would like to proceed. For now the plan is to hold course. We will continue to monitor her O2 sats and will repeat an echo in 2 months. Its hard not to get overly excited about this news as we know that there is still a long road ahead. For now we're celebrating the good news and praying that God continues to strengthen her heart day by day. WHAT A GREAT WAY TO START THE WEEKEND.

As for the rest of the weekend, Charley's "Aunt" Jessy came to visit! While she was here we had an official 10 pound party for Charley complete with gifts and cupcakes. I think that between the two of us we probably gained about 10 pounds in honor of our little peanut finally hitting the same mark!

A special gift from Aunt Jessy
Hehe...her new shoes are too adorable!
What an exhausting weekend!

4 comments:

  1. So happy for the good news! Looks like you had a great weekend with a great friend. Looking at the last picture,...."What did you do to her hair?" :)

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  2. Haha...its called "bathday!" The greasier her hair gets, the more crazy it gets!

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  3. So glad the Aunt Jessy came for a visit! And what a creative gift! I love that girl! :) Great news about Charlotte! Can't wait to see her in a week!

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