A few days ago, I was really looking forward to giving a weekly update. Besides some GI issues we are concerned with, Annabelle was having a GREAT week. The kids got to hold her for the first time on Monday, and she was just doing really well. They were talking about doing a surgery on her stomach to help with her reflux, and I was really concerned about that, but now, I would give anything to just have to worry about reflux again!
As my previous posts noted, Annabelle had an episode yesterday morning where her heart-rate dropped dramatically as did her oxygen rate, so they had to call stat and revive her. They intubated her after that, saying it was what they call a Vagel episode. Not sure how to describe it, but it’s the same kinda thing adults have if the, for example, faint at the sight of blood. Both times, Annabelle was highly agitated and basically just fainted. However, due to her heart condition, this sudden drop in BP and oxygen is very dangerous for her and she can’t recover on her own.
Well, she had another episode around 4:00 yesterday, and it was even worse than the first, as her rate went even lower and they had to do chest compressions for about 5 minutes.
Right now, they have her completely sedated and paralyzed so she can’t move and nothing can agitate her. They are also keeping her body very cold since she had 2 coding episodes in one day to prevent damage to her other organs. They’ll start “warming” her this afternoon and start the process of bringing her out of her present state and back to normal.
They also have concerns because her previously mild to moderate leaky valve is now moderate to severe. The leaky valve is the reason she was still in the ICU (or at least the medicine she was on for it was.) So they’ve upped her medicine to try to help that, but it is still a pretty big concern at this point.
We’re holding off on talks about her stomach surgery until we get over this newest development.
Scott and I are holding up, Scott better than me (which is good because it’d be hard if we both fell apart!) Yesterday was just really difficult and stressful, and sleep was illusive last night. I kept hearing footsteps and fearing it was someone coming to tell us bad news. It didn’t help that a little girl whose pod was across from Annabelle’s didn’t make it yesterday. My heart breaks for her family, so please keep them in your prayers as well. It just wasn’t a great day in the PCICU yesterday.
Your prayers are appreciated. We are hanging in there, God is STILL good even though we don’t always understand.
Here are a few pictures from this last week:
Annabelle and her big sisters! This was taken on Labor Day. Annabelle’s shirt, which you can’t see well, says, “I’m the little sister!” All three of the girls got to “hold” her for the first time that day!
I just liked her purple outfit and bow:-) It was SO SO fun to actually be able to dress her in whatever we wanted because she had so few tubes!
And *sigh* the sad picture. I took this this morning. But I’m firmly believing that she will be back to her “normal” self in just a few days and so I’ll have a fun, happy picture to share with you, and we’ll be able to all celebrate how fast she got better again! We serve a faithful, loving God, and I’m believing that His hand is on my Annabelle even now.
Oh Krista! Your pictures brought me to tears! You're really having some major ups and downs. I just can't even begin to imagine the emotional roller coaster. Hang in there, sweetie. Sending you a big hug!
Krista, like Jody, tears were a part of reading your post. I am just so sorry Annabelle and your family are having to go through such difficult times. We are praying hard and know that God's hand is upon your family.
(((HUGS)))
I'm crying. Your pictures have made me cry, and my heart hurts so badly for you. Whatever happens, I want you to know that I believe – I KNOW your daughter will have loving, caring arms around her. Please keep faith. My heart and prayers are with you.
Oh Krista, this just makes my heart hurt so bad for you all. Like everyone else, I'm crying. Your girls are so beautiful and I just love that Annabelle has that pretty blanket to cover her…Praying for you all. *hugs*
Your girls are all so sweet. Thanks for sharing the pictures. Continuing to pray.
Much love and blessings,
Karen
Continued prayers go out for your precious daughter and all your family. Hugs are sent too.
Krista, like the others, your post brought a few tears. And a ton of prayer. May you feel God's arms around you during this difficult time.
Krista, all your daughters are so beautiful. Praying for you and Annabelle.
Krista, I'm so sorry that you are going through this. She's such a beautiful little girl–as are all of your babies.
Praying for you.
Patti
Hi Krista –
What a difficult time for you and your family! We're praying for you. I'll be putting a special note on Annabelle's difficulties in my email prayer list.
Hugs,
Susan
Krista, my heart aches. I am praying now that the Lord be with you all in a way that only He can.
Take comfort that we are all believing the best:) For with God nothing shall be impossible.
Like everyone else, I'm crying, praying, and hoping that you find the strength to keep getting out of bed each morning.