Thursday, December 16, 2010

The 6th floor... and beyond!

Well, we finally made it to the 6th floor!

We moved late Monday night... I got a call at 10 p.m. saying they were moving her then. I said, uh, NO YOU ARE NOT, and made them wait 45 minutes until I could get there! My baby was NOT going to move without me being there with her!

So far, she's doing fairly well. Her first day was rocky, though. She ran a fever, got a urine culture, had her sedation meds bumped back up because she was so fussy she was requiring additional doses, and generally just had a cruddy day.

This obviously made MOmmy feel cruddy as I really think she just neede dme there with her, yet I had to be at work.

So on Wednesday, she had some desat issues and was again cranky, so I choose to work from the hospital that afternoon/evening. It was a MUCH better afternoon! Her and I rocked for a good 2 hours. Then she had some good awake and toy playing time (aka accidently hitting the toys with her hands!)

Mommy also got to try and do some fun things with Annabelle on her day at the hospital. In the past 2 days I have:

  • Transitioned to giving ALL of her meds myself --except for the middle of the night ones which I lovingly still allow the nurses to do... I wouldn't want them to feel left out!
  • Gave my daughter her Lovanox (blood thinner) shot 3 times-- although note that she has an insuflon port so I'm not actually "poking" her each time.
  • Changed Annabelle's insuflon port which means I DID have to poke her -- TWICE because the first one came out when we put the dressing over it wrong. I had sworn that I would NOT NOT do this, but am proud of myself for doing so. Needles and Krista are NOT NOT NOT a good mix!
  • Taught myself how to prime Annabelle's feeding pump all by myself because I couldn't find the nurse, had added feeds to her bag, and didn't want her to get a whole bunch of air in her belly.
My goal is this: I want to learn EVERYTHING I need to know ASAP so when they say, okay, Annabelle is ready to go home, that Mom is ready too! I don't want them to have any excuse for keeping them, any "but mom needs to know ____"

On a slightly sour note, the attending doctor yesterday didn't quite make me happy. In his words: "I'll be really surprised if Annabelle is able to go home before her Glenn." I reminded him that the surgeon said that he wanted her to go home and come back in the Spring. His response? "Well, he wants a lot of things and doesn't always get them." Or something to that nature. *sigh* So I'm now getting the feeling that there are mixed opinions on when Annabelle's next heart surgery could be.

My point back to him was this: WE ARE NOT SITTING HERE TWIDDLING OUR THUMBS UNTIL SPRING.

If it is decided as a team to not go home, then we need to DAD GUM IT schedule her surgery. She is 5 months old. They usually do it around 4. Yes, we need to make sure her pressures are good, but she is plenty old enough for them TO be good.

If it is decided as a team to go home, then we need to stop scaring mother with the doomsday attitude. I'm an optimist... if we are going to have a plan, we are going to assume that it will WORK instead of saying it probably won't, and continue to take steps toward that goal.

Can you tell that I'm a wee bit passionate on this subject?

So, that brings us to today.

For some reason I'm having a difficult time today. I feel the cards of everything I need to do stacking up way high, and they are dangerously tilting, and a few are even slipping off. Couple that with the increasingly slim chance of Annabelle being home by Christmas, I'm just having a tough day. I heard the song, "I'll be home for Christmas, if only in my dreams" this morning on the way to work. I sobbed. I KNOW home is not a building but the people in it. I really do. But... *sigh* I'm having a hard time giving my dream to God.

Maybe that's why I feel so crummy today. Part of the reason anyway. That and I've not slept well in the past week. Five months is a long time to be in the hospital. I KNOW others have been in the hospital longer. I know I should toughen up and just get through this (for those of you who don't know me well... this is my motto!) But right now I'm dragging. I need a mental/physical/spiritual/emotional energy drink. My sister said, too bad you don't drink Vodka. I said... it's a good thing I don't drink Vodka right now!

On a brighter note, Annabelle got a visit from Matt Hammitt again tonight! He and a friend from Sparrow Records came by, brought us some fun CDs, and talked for a bit. If you haven't read his blog, he and his wife Sarah write about their son, Bowen, who was born a few months ago with a hypoplastic left heart as well. Bowen had the same surgery as Annabelle, spent 10 long weeks in the hospital, and is home doing well at the moment. Matt writes some amazing stuff about going through this journey as well, and I for one have been very encouraged and impacted by it!

One of the things he writes about is counting your suffering as joy. UGH. That seems like such a contridiction. And days like today, I look at Annabelle in the hospital and wonder, how in the world am I supposed to count my daughter's suffering as JOY, Lord? Really??

But my JOY comes from knowing that God is going to use my daughter to do amazing things, and that He is already using her to impact people's lives. She has impacted my life, that is for sure! Some day's it is easier to do than others though.

Prayer requests for today:

That Annabelle stays fever free! (ran a 102.9 fever yesterday again...)
That Mom doesn't go postal.
That Dad is able to come see Annabelle a little more so he can learn all the fun "care" as well.

Prayers for my other kiddos are appreciated as well. They're doing good, but I'm seeing many ways where this is starting to take a pretty good sized toll on them well, and it concerns me. My prayer has always been that this increases their faith, however lately I feel like it's been a little much on them. Please pray as Scott and I figure out how to meet the needs of ALL of our children during this time.

And for strength. Really, that's what I need most of all.

 Loves snuggling with her lamb!

 Getting ready to move!!! LOTS Of stuff!

 Princess Annabelle on her throne. The chariot awaits!

 In the elevator! The ceiling is blue with a big duck on it, so it makes her look bluer than she is (although most hypoplasts are a little blue tinged anyway!)

 In her new digs... the move exhausted her! (and lamb too if you'll notice...)

 So, Annabelle had air in her tummy. This is her fun rigged up method of getting rid of it while still eating! Modern medicine at work here, folks!

 Need to bring Annabelle's mobile to the hospital since we no longer have a lamp to hang toys from. The string from the venting system works for now though!
Good night folks!

11 comments:

Keli Gwyn said...

Krista, I appreciate you sharing your heart. It helps me know how to pray.

You don't need to apologize for your feelings. They're normal for a person under tremendous stress. I admire you for how well you're handling this. You're a loving mama with a great big heart. I wish I could drop by, give you a hug, and meet your little princess in person. Alas, you'll have to settle for another cyber (((hug))). I'll say an extra prayer for you tonight.

Wendy Delfosse said...

CONGRATS!!!! I'm so happy to hear you're back on the 6th floor! Aiieeee!
I will pray tonight for you and Annabelle and the whole family.

Anonymous said...

Oh Krista...how I love this post!! I am thrilled for you and your family! The pictures are fabulous. I will keep ALL your kiddos in my prayers, and of course, I will pray that your don't go postal!! Even though things could be worse, it's OK to be upset and disappointed at your situation. I promise you I would be rolling on the floor kicking my legs if I was in your shoes. You are amazing!
Jessica Scranton

Carla Gade said...

Krista, I'm glad to hear your little sweetie pie in on the 6th floor. All of this is beyond frustrating for you and I'm so glad you have shared your heart. Praying good things for all of you and especially for you to be overwhelmed with the peace of God.

Carla Gade said...

PS Thanks for sharing all the photos of your beautiful baby girl!

Heather Sunseri said...

Hi, Krista! I love the pictures of your sweet daughter. Saying prayers for you and your family!

Nicole O'Dell said...

She is so beautiful!

Praying!

Cindy R. Wilson said...

Yay for the 6th floor! Krista, you and your family truly inspire me with your strength. That you can go through all this and still find the good in it is a lesson to all of us. And I will definitely pray for you and your family and little Annabelle. Thanks for the pictures, too!

mom2lo said...

Thanks for sharing this encouraging update! I'm so glad to hear your sweet little one is finally on the 6th floor!

I must admit we too had one of those docs with a "God complex" -- I would've wanted to punch that guy in the face there and then when he said what he did about Annabelle not going home before the Glenn. I know it's hard to keep up that optimistic mindset, but hang in there! God already knows what tomorrow holds so there's no reason for you to worry or fear over it. Let Him hold you and Annabelle and carry you both through these trials.

God bless you!

((Heart Hugs!))
Kathy

Tammi T. said...

Glad to hear you've made it to the floor! I'm still praying for your dream "to be home for Christmas". No matter how God answers, I know you'll keep trusting Him. Don't let that keep you from being "real" with us and with God.

I understand about trying to balance the needs for all of your children. We faced that dilemma, too. One of the things we tried to do was designate a "special day" where I would take our other son to do something and spend time alone with him. I know this would be more time consuming for you since you have 3 other girls and I only have one other boy; however, I thought I'd put the idea out there.

My boys pray for Annabelle almost every night that God would "help her heart" and "let her come home". I will continue to pray for you, too.

God bless.

Tina Russo Radcliffe said...

You're so allowed to have down days.

Those are truly the days when your friends get the honor and privilege of holding you up.

Praying@!@