Abby will be getting her g-tube placed tomorrow "mid-morning" hospital time (translation: around 3:00 p.m.!) She does not have to have the nissin, a more extensive procedure done to prevent reflux, so the surgery and recovery should be fairly simple.
Of course, any kind of surgery makes me anxious and I'm going to be alone during this one, so please pray for us tomorrow!
She will be without feeds for a day or two, which will probably mean a little weight loss. Hopefully, we'll be able to get it back quickly (they increased her calories again) and finally reach that magical 5 pound mark!
Also, please pray for us as Thanksgiving approaches. I seriously had no idea how close it was and was hit hard with the reality that we will be spending the holidays away from home. While we are incredibly thankful for the Ronald McDonald House, we would much rather be home with our entire family of four.
However, we're trying to focus on everything for which we can be thankful---mainly, that Abby is here with us!!! I've also been truly thanking God recently for Dr. P, the surgeon who placed her trach. He saved Abby's life with his decision and quick thinking. A thank you note is so trivial in comparision with what he did, but it will have to do. We also are SO thankful to all of you who have come along side of us and prayed, send cards and gifts, made food, provided for a physical need, etc. Our family and friends are the best!
Alright, enough jabber for tonight. I really do need to get to bed earlier. This morning I broke down and drank a Coke to keep myself going, which I rarely do. NO MORE! :)
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Tuesday, November 16, 2010 11:21 PM, EST
Abby's g-tube placement went well. There were no problems and she is sleeping it off now!
Here is is...the last installment of the Q & A! (with a few light-hearted ones too!)
Since your hospital stay was sudden, how did you do your plans for school? Well, I didn’t! Thankfully, I have a wonderful team and administration who all pulled together to make it work. Teaching honors reading means that I am pretty much on my own, which made grabbing stuff a little harder on my team. Unfortunately, those first few days of my hospitalization were so full of stress, procedures, and ridiculous amounts of mind-altering medicine that I was absolutely NO help at all to them! Once things at the hospital slowed down and I was able to focus again, I did a lot of typing and emailing things to my sub. However, the bulk of that first week or so was taken care of by my team. They are awesome! I have to also say that my long-term sub has really taken on quite a responsibility and just run with it. He stepped into a difficult situation and has done really well!
Has your principal been supportive of your situation?
If she weren’t, I certainly wouldn’t be answering this question! J YES, my principal has been amazing!! She has not only been really helpful in lesson-planning and providing support to my sub, but she has also been incredibly encouraging to me! She often sends me “just thinking of you” emails and posts notes on the site. She has also been great about answering the more technical insurance and job-related questions because she knows that my detail-oriented mind needs those answers even now! I seriously couldn’t have asked for a more supportive principal through all of this.
Does Piper [the little girl who also has CCMS] live in the hospital?
Yes, she does. Her condition is too serious for her to be safe at home. Living in the hospital is just the best place for her to be. I’m sure that must have been a difficult decision for her parents, but we all want to do what is best for our kids! You can check out Piper’s story at www.reagansblob.com In case this question is come up, our plan is for Abby to come home. Her doctors believe that she will be able to, but we will ultimately do what is safest for her.
What is your favorite food?
I like Fuddrucker’s bread, broccoli casserole, crab chips, Reese’s Peanut Butter Cups, Brussels sprouts (for real!), and pomegranates.
Do you miss driving?
Actually, not really! I haven’t driven since September 19th and haven’t really thought about it at all! I’ve had other things on my mind, I guess. Plus, I really like the walk from RMH to the hospital and am starting to feel like a real city girl. I never thought I’d see the day when I would cross streets in between cars and navigate my way around a humongous hospital. I’m doing a lot of things I never thought I’d do…
Is it safe for you to drive?
Yes, I believe it is. Thanks, Amy, for the vote of confidence. If I am a bad driver, I blame you. You taught me!
Do you think you’ll be getting your own TLC or Discovery Health show?
Well, if they will help pay our medical bills, we most certainly will!!! J (Betsie Camilliere, you make the call and we’re there!) In all seriousness, we’re definitely learning about insurance benefits in a whole new way. Major medical claims take on new meaning for us!
How are you juggling the demands placed on you?
Ha, I really don’t know! Yes I do. That’s a lie. It’s God…100%, totally God. I could never, ever, EVER do this on my own. I would have had a nervous breakdown by now. God has truly granted us enough grace for the moment to get us through. We are starting down a path that is unknown and scary, but God knows exactly what is going to happen. He loves Abby and has an amazing plan for her. We just can’t quite see it yet!
We are also relying heavily on lots of wonderful family and friends! As I have mentioned many times, my sister has been amazing with taking Caleb. He can be a handful and she is taking it all in stride. My family has been available to bring us things from home, watch Caleb here, bring dinner, etc. Matt’s brother raked leaves and cut our grass for us. We’ve had lots of friends helping out by making meals, sending care packages, watching Caleb at church, etc. We could never do all of this alone. We’re definitely blessed!!
The nurses in the NICU have been amazing and we are incredibly thankful for them. They allow me to participate in Abby’s care and are beginning to teach me some of what I will need to do when we take her home. Every little thing I learn is helping me to feel more comfortable, so I eagerly do whatever I can! I know I’ve mentioned the awesomeness of Megan before, but Carrie, Wendi, and Christie have also been wonderful at allowing me to be an active participant in Abby’s care.
I’ll say it again; RMH has been such a blessing to us! Every meal they provide means one less that I have to worry about making (or, more likely, buying!) and the activities they have for Caleb are so wonderful! The books that were donated this weekend were a lifesaver for us more than once! I really can’t say enough about this wonderful organization. It’s not home, but it is as close as we can get right now.
How are you doing? As a new mom recovering from delivery, have you been able to rest?
Well, no…not so much! I blog at night after getting back from the hospital, wake up several times a night to pump, and my alarm goes off at 6:45. However, God obviously knew that I would need to be there for Abby. He gave me an easy delivery and an almost non-existent recovery. I seriously felt absolutely fine just a few days after having her. By the time I left the hospital, I didn’t feel like I’d had a baby. And no, I didn’t have an easy delivery/recovery with Caleb—quite the opposite! I’m so thankful that God allowed me to focus on Abby. He is also giving me a lot of energy that I didn’t know I had—all without the assistance of caffeine!
If you read all of this, good for you!! You're pretty darn dedicated. :) Shoot me further questions and I'll answer them every now and then on here.
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Wednesday, November 17, 2010 12:00 PM, EST
Last night, Matt and I had the opportunity to go to the Carrie Underwood concert. Tickets for various events often get donated to RMH, but this is the first time we've accepted them. I was hesitant and struggled with feeling guilty or that people were going to judge us. I didn't even post anything ahead of time because of that! But Matt (and others) convinced me that it wasn't a bad thing to take one night off, and Matt and I have not been anywhere alone together besides RMH and the hospital in 2 months!
It was a really nice evening, even if it wasn't quite Matt's style of music. He appreciated the musicians and the performance though. Carrie did some crazy stuff that including being suspended on a swing, flying through the air on the back of a blue pick-up truck, and wearing a LED-lit dress that had it's own light show! We both agreed that it was pretty cool. Unfortunately, I couldn't take any pictures because they wouldn't allow me to bring my "professional" camera in. It did NOT say on the website that SLRs were not allowed! Sigh...
I missed my Abby and we called twice, but she was sleeping off the anesthesia and didn't wake up at all anyway.