Saturday, March 28, 2015

Updates and an anniversary

It has been one year since the ultrasound that turned our world upside-down.

What a day of highs and lows that was. We were thrilled to find out that we were having a little girl, our Aberdeen Wren. Jameson had suspected from the start that we were having a girl, but I hadn't had any strong inclinations either way, so was elated to finally know! Everything at the scan had seemed to go well, but our world came crashing down a few hours later when we got the call that something might potentially be wrong. Though it was still unclear at that point what the issue was or what it might mean for Abby's overall well-being, it didn't matter, something was wrong and it was devastating. 

Though I will worry about Aberdeen every single day for the rest of forever, as any parent would, I don't think anything was as anxiety-inducing as the concern I had for the questionable health of our unborn child. The surgeries have been hard, the recoveries have been harder; waiting to see what Abby would be like, if she would be ok, was the hardest thing I've ever had to do.

It has been a challenging year, no doubt, but being able to see and love on our sweet baby, makes the difficult days so much easier to deal with.

Abby's procedure last week went great, even better than expected. We got to say hello to some great friends (families and nurses), and then we got to go home! It was so reassuring to know that Abby can now tolerate small procedures without landing herself back in the CICU, and that her heart surgery really has made a difference. 

The rest of this past week has fit in nicely with the last-week-of-March-highs-and-lows theme we seem to have started. 

Highs: Jameson's birthday was this week! Yay! Abby's vomiting was not as frequent - we started her on a new medication a few weeks ago, and while it certainly hasn't fixed the problem, we're happy it's at least helping! Abby had her last Synagis shot and flu shot booster, so we should be able to start taking her places here soon without the hightened risk of contracting a respiratory virus! 

Lows: I slipped down the stairs while doing laundry on Wednesday, and bruised up my leg and ego pretty badly. Seriously, you'd think I'd be able to walk up and down stairs with all that dancing growing up, but no. I'll be fine, just a klutz. The balloon in Abby's new g-tube button popped last night (see image below). These things are supposed to last months, but this one only made it a week. We had a spare on hand and got it all fixed up, but gosh I hope this isn't a representation of what's to come. 

All in all, things are going well enough and we're looking forward to Spring and getting out of the house some more!

Thursday, March 19, 2015


We are already home!!!! Barely more than 24 hours after being admitted for Abby's procedure, and we are ALREADY HOME! 

Everything went smoothly today during the endoscopic removal of Abby's PEG tube and placement of the AMT Mini button. She spent a whopping 45 minutes in the OR, and briefly recovered in the PACU before being sent back to the cardiac step down unit for observation throughout the afternoon. This is the very first time that she has been put under general anesthesia, intubated, and NOT had immediate complications. We could not be happier!

Thursday, March 12, 2015

7 Months Old

I know I'm a couple of days late on this, it's been a busy week!

We have been home for seven weeks now!!! Abby has been doing well overall, making huge strides in her ability to reach, lift her head, and hold a supported sitting position. We were told numerous times that after about a month at home we would probably start to see her really start to progress developmentally, but I didn't expect to see so many improvements in such a short amount of time! With her newfound skills, Abby has developed a great love of grabbing my sleeves, hair, face, and anything else she can get her hands on. It's really pretty funny.

This has been Abby's biggest area of struggle.
The fact that she can look at this toy now while on her tummy is amazing.
She has really gotten great at sitting.  She is even starting to support herself on things in front of her.
Pretty soon, she's not going to need me to hold her up!
Abby has continued to average about four appointments a week. She had recently seen GI, ophthalmology, nephrology, radiology, complex care (pediatrician), the interdisciplinary feeding team, pulmonary, and cardiology (along with PT and OT). We will follow up with orthotics and neurology in the next week as well, and she will start regularly seeing speech therapy for feeding therapy. She handles her demanding appointment schedule pretty well, all things considered. It requires quite a bit of time in the car and definitely doesn't coordinate with her preferred nap times. Hopefully as we get more of her post-hospital follow-ups out of the way, things will settle down a bit. 

Abby has had strabismus and nystagmus for some time now.   To ensure that the strabismus does not start interfering with her vision, we now have to alternate patching for an hour each day.  Pirate Abby is not a fan, arrrr.
We will be heading back to the OR next Thursday for a very scheduled procedure for once. Abby is due to have her long g-tube changed out for a button. Tubes aren't designed to last forever, and because her tube was initially placed endoscopically, it will need to be removed the same way. Once she has the button setup, we will be able to change out the tube at home. Hopefully we will be inpatient for a max 48 hours - I've explained this to her many times. It's going to get through to her, I just know it.

Dear Abby,

You are now seven months old! You have changed so much in the past month, it's astounding! You can now hold your head up for a couple minutes when laying on your tummy, can stay sitting up while hanging onto my fingers, and can reach and grab everything in sight! You like to tell us long, involved stories, and despite the fact that you have 10,000 toys, you've decided that washcloths, sleeves, bibs, and my hair are the absolute best things to play with. You have developed a great love of Silly Songs with Larry and kicking the crunchy paper at your medical appointments. You make the funniest faces and are so quick to smile, it lights up my day.

Yummy bib
In the past couple of weeks the weather has started improving and we've gotten to have some really fun experiences with you! We've taken walks around the lake behind the house, and you even got to experience snow for the very first time. It has been so nice to get to do things with you that have nothing to do with doctors or therapy - things that are truly just for fun! I hope that as the winter ends and respiratory virus season along with it, we'll get to have even more adventures! Maybe we can go on a hike, or to the park. We might be able to take you to a restaurant or out shopping even! I know that we'll have to take it easy, but it would make me so happy for you to get to experience life outside of the house, car, or doctor's office. 

Beautiful little snow baby
Looking cool on her walk
We have to take you back to the hospital next week for a quick procedure, and while I've tried to stay optimistic about how everything will go, I'd be lying if I said I wasn't nervous. I've loved having you at home so much, that I don't even want to think about another extended admission. You're going to do great though, you will, and we'll be back home before either of us know it.

I love you, sweet baby. This past month has held so many gifts and surprises as you've thrived and grown. I can't wait to see what the next month has in store for you. 

Your Mommy