January 21, 2012

Just wanted to post a Britta-update for the weekend. The last couple of posts have been about ME and MY feelings, and while it's part of the struggle, I feel incredibly selfish for devoting those posts to myself...

So, back to Britta!

She is doing fairly well. She had a large number of her tubes and lines removed this past week, and all that remained were her pacemaker lines, her foley, her o2 sat, her arterial line (I *think* that's it!) Today, they removed her foley and her A line. Meaning we could hold her! Only, it didn't work out that way. Earlier this morning they told us they'd be taking the lines out and that we could hold her when we came back that afternoon. I went in after running around with the other kids who are in town for the weekend (yay!) and Britta was sleeping soundly. Her poor nurse told us that she had every intention of taking the lines out, but Britta threw the BIGGEST tantrum ever after she changed her diaper and she couldn't get her to calm down enough to remove the lines. She screamed and cried and thrashed around until she passed out. After that, her nurse didn't want to risk waking her so she let her sleep and decided to try to remove the lines when she woke up. She was able to remove them later on, but more on that later in the post...

The doctors have prepared us from the beginning that feeding would be one of the hardest parts of Britta's recovery. She has been on an NJ tube (it pumps food from her nose to her intestines, bypassing her stomach) for a few days and doing okay. She has thrown up a couple of times and appears to constantly have a stomach ache. They may do a GI study to determine if she has some sort of secondary stomach issue in addition to her heart problems. They will continue to feed her NJ for a couple of more days (best case) and then move on to an NG tube (her nose to her stomach) before moving on to *trying* to bottle feed her again. The docs have said that heart babies in particular have difficulties re-learning to bottle feed because 1) it has been several weeks since she has had a bottle and she may no longer have that newborn natural sense of how to bottle feed and suck and 2) because of the great amount of effort it takes to suck, breath and swallow, especially on someone so little and with such an extensive medical history already. SO, she is doing "okay" with feeding, but it is a slow process and we have no clue how long it will take to get her eating and gaining. (And she can't go home until she is doing both of those things well!)

Back to her tubes/lines being removed. We took the kids out around town today and of course, that's the one time since we've been here that the hospital calls with an "issue." Nothing major that we needed to rush back for, but to let us know that her heart rate was (still) high (it has been the last two days). They had had her on a Nitro patch, but it was no longer keeping it at an acceptable level so they put her back on Digoxin but a higher dose than she'd been on previously (and had been taken off of it) and also had to re-sedate her. So, while her lines had been taken out, by the time we got back to the hospital, she was sedated and we weren't able to hold her after all.

I've been waiting to do that for weeks, but honestly, all I want now is for her heart rate and blood pressure to go back down and be under control. That's my main concern. Though, when I am able to hold her again, I probably won't ever, ever, ever put her down again! ;)

So, that's what's going on in Britta's world the last few days!

There was this, though, when Chris went to the hospital to check on her early this morning, she was having a little face-off with Mr. Squirrel. :)

Before I close, I just want to say again how COMPLETELY and TOTALLY blown away, grateful and humbled Chris and I are for the generosity we have been shown lately. In terms of prayers, donations, time, cards, amazing care packages, and countless other things (coloring my sweet Hailey's hair to take her mind off of things and make her feel good about herself; gift cards for that much needed cup of coffee or sweet treat; sending me your amazing manuscripts to read to take my mind off of things for a while; friends making the trip to NOLA to see Britta and/or bring us things from our home that we need/want, taking on the enormous task of fundraising for us....the list is long and overwhelming!) We are forever thankful and our entire family is changed forever because of each and every one of you who has helped us during this time. Thank you will never be enough, but thank you, thank you, thank you.

Love to you all, thanks for reading and keeping Britta in your heart! :)

-Steph