Thankful

Since my last post there have been a few changes, most notable that we now have a 7 lb girl (7 lb 0.7 oz as of last night). After another week of only minor improvement on the eating front, we decided to remove Casey's NG tube (or nasogastric aka feeding tube) to see if her hunger urge would take over when she didn't automatically get what she didn't take by bottle through her tube. She showed us pretty quickly that she wasn't ready. While she started out well and did improve to taking about 60 percent of her daily volume by mouth, it just wasn't enough to gain weight and stay hydrated long term. She had 3 feeding bradys on the second day, another big sign that all this eating was wearing her out, so we decided to put the NG tube back in. The two nights she was off the tube, I stayed the night with her to see if it would help if there was one consistent person feeding her. After getting a combined total of about 7 hours of very interrupted sleep over the two nights, and then playing an exhausting game of "Mommy, I dropped my paci...again" for an hour and a half one morning, I was ready for the comfort of my own bed! We are going to continue to give her some more time to grow stronger, and we expect if there isn't a significant change soon, that the doctors will start discussing the possibility of taking her home on a feeding tube. Please keep praying that her endurance will increase enough that this isn't necessary, but we are mentally preparing ourselves that it may be the best thing nutritionally for a while. Yesterday, we did get the good news that Casey passed her hearing screen! Now, we are just hoping to get the same news about her eyes soon, and prayers are appreciated that there will be improvement at the next exam in two weeks.

As for my health, I had my 3 month check up with my Endocrinologist today, and she was happy that my A1c level, or average blood glucose, is now at 6.1%. Compared to the 14% I started out at when I went into labor, (which was so high it wasn't even on the chart I got in my Diabetes education class), this is really good. Now we are going to work to control my lows (when I become hypoglycemic) by adjusting my long lasting insulin dose I take at night. Hopefully this will also improve when I am no longer living off of fast food and not eating as often as I should when I am running back and forth to the hospital.

As we prepare to spend Thanksgiving in the hospital (and my first Thanksgiving at home in all of my 29 years!), I can't close without mentioning some of the things I am most thankful for. As you can imagine, the list is pretty extensive as we have a lot to be thankful for this year, but in a season of giving thanks, I wouldn't have made it through the last 3 1/2 months without all of these things:

1. Casey - First and foremost I am thankful for our little miracle baby and all that she has overcome to get to where she is today. We know we have a long road still ahead, but we are thankful every day that she is here and for the precious time we get to spend with our Doodlebug.

2. An Incredible Husband- I can't even begin to imagine going through this long journey without Brian by my side. Words can't even describe the overwhelming love I felt when I saw my husband holding our tiny girl for the first time. B, thank you for being the strongest person I know. You are my rock and Casey is so lucky to have you as a Daddy!

3. Family - We are so lucky to have such an amazing support system in our family. Our parents have been there to comfort us and encourage us from the day I went into the hospital, and we appreciate you so much! I have to say a special thanks to my mom, who makes the long drive to the hospital every couple of days to sit with my sweet baby and who has willingly agreed to sacrifice her first year of retirement to watch Casey so that I can return to work when the remainder of my maternity leave ends. Brian's parents have also been incredible and have made the long drive up from Houston every few weeks to visit Casey. Our extended family has been so amazing in checking up on us and staying updated on her progress, and your words of encouragement have meant so much.

4. Modern Medicine - It goes without saying that without the advancements in modern medicine, Casey's future would have been a whole lot more uncertain. We have had an incredible team of doctors and specialists who have helped Casey overcome some pretty tough odds.

5. Amazing Nurses and Hospital Staff - We have been blessed to have some outstanding nurses caring for Casey, and I think our precious girl has made quite an impression on some of them as well. In the NICU, we were fortunate to have 3 primary nurses, Lauren, Amanda, and Lindsey, along with many others who were always there to encourage us about her progress, answer our bazillion questions, and have even checked in on us in the weeks since we have moved to Special Care.  We also loved our favorite Respiratory Therapist, Jeni, who always made sure her oxygen equipment was just perfect. We have now grown very fond of several Special Care nurses, particularly our weekend nurse Olivia, who always takes the time to sit down with us and talk about how much improvement she has seen.

6. Caring Coworkers and Faculty - I am truly blessed to work with the kindest and most compassionate faculty. I was flooded with cards and messages of encouragement from them when Casey was born, and they have continued to check on her progress and make my transition back to work so much easier. They also made sure we were well fed by providing delicious meals for many weeks! My fourth grade team has also been incredible, and I can't even imagine coming back to work without all of their help and support.

7. Our Friends and Blog Readers - We know there are so many people out there following Casey's story and praying for our daughter every day, some that we have never even met! We can't thank you enough for all of your kind words and prayers. Even though I can't respond to all of your messages, please know every one of them has been read and appreciated, and please keep the prayers and encouraging words coming!

We hope everyone has a blessed and wonderful Thanksgiving! Our nurses keep commenting on how expressive Casey is, so enjoy the many faces of Casey Elise:

"Look mom, no tube!"

 Look at those cheeks!

 She was over picture time!

 I can't get enough of this face.

Snoozing away!

Pretending she can actually hold her own paci...moments later we were putting it back in her mouth.

Big girl in a bouncy seat!

Our sleeping beauty

 My two greatest loves!

 Thanksgiving Family Photo!

 Happy Thanksgiving!

"But I don't wanna wear my Thanksgiving outfit! I know, I'll just spit up all over it!"

And this lovely face is the "Eww she just spit up, but quick get a picture of her cute turkey booty!" look.

The turkeys I made our nurses for Thanksgiving.  Another Pinterest idea!