Monday, May 9, 2011

One Month Anniversary

Today marks the one-month anniversary of Annabelle's new heart.

A month ago today, I was wringing my hands, excited and petrified at the same time. It was finally heart day... the day we'd all waited for for three long, but at the same time short, months.

And a month later, we're still here.

I'm okay with that though, mostly. (Geez, I sound very indecisive today!!) I had prepared myself to spend about a month in the hospital post-opt. They say "average" is 3 to 4 weeks hospital stay post transplant. When they told me we'd be going home at around 2 weeks post op, I smiled and nodded. And didn't believe them at all. Partially because Annabelle has NEVER beat the average. But mostly because somewhere in the depths of me, I think God was whispering, "It's not time quite yet, Krista." So I prepared for her to come home, got everything ready just in case, but was trusting God that she would come home at the BEST time for her, when she was truely ready to be home.

And as dumb as it sounds, I'm glad she didn't. I know we would have gotten home, and she would have had breathing issues and we would have come right back, and oh my, that would have been disappointing. I'm glad we got her diaphragm surgery out of the way while we were here. I want her at her BEST when she comes home and sees her home for the first time. I don't want her barely keeping her SATS up and me being scared to go to sleep for fear that she'll stop breathing while I'm not watching.

Granted, I'm probably gonna worry about that anyway, but still.

Annabelle is doing well this morning. Fever free since 2 p.m. yesterday. Finally down to a half of a liter of oxygen again. Her lungs are MUCH clearer (Doctor's said we should frame her Xray this morning because it's one of the best we have ever seen...and looking at it, I concur! I saw AIR instead of FLUID... WOOHOO!) and while she is coughing some, they are good productive coughs.

Her numbers that were elevated WAY high over the weekend (for those of you who like to know numbers, her CPR was 374 at the highest and her white count was 24... these should both be like under 10)  are now trending down. Unsure if she had a virus and they are trending down because she is over it, or if she had an infection brewing and her antibiotics are helping. We are still waiting cultures to find out for sure.

When she comes home is directly related to the outcome of that, and how fast we can get her on NO oxygen.

She still has a chest tube in as they still see a little concerning spot, but they'll reevaluate tomorrow and hopefully it will come OUT!

Yesterday in my bible reading, I read Romans chapter 8 (specifically vs 18 through end of the chapter.) Verse 18 starts out by saying, "Yet what we suffer now is nothing compared to the glory he will reveal to us later."

THANK GOD FOR THAT!!!

I think sometimes we are under the belief (and I apologize if this denominational) that as Christians, we are not supposed to suffer. That our bodies are not supposed to hurt. And if we DO suffer and we DO endure pain, it is because of a sin that we have committed or because we aren't having enough faith in God that he will heal.

I just can't agree with that. The past nine and a half months have sealed the deal. Annabelle was born into a fallen world, as part of a fallen creation. It was by no fault of hers (or mine) that her heart was damaged. It was purely due to the fact that sin is IN our world and bad things happen, even to those of us who are saved by God's amazing grace. Verse 23 (NLT) says, "And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised."

I'm reminded that even though Annabelle has a new, functioning heart, her body is not perfect. And it won't ever be. She's having lung issues, and she is always at a risk of her body turning against her heart and rejecting it. She's at a much higher risk for all cancers, and a myriad of other issues.

And it will be something she has to deal with the rest of her life. But for believers, there is hope for our future Glory... God only gives us a taste of it now. Annabelle is a GREAT example of God giving us a taste of a "new" body in Him. Only our new bodies will be "risk free", with no consent form to sign with all the possible side effects or risks involved.

I DO believe God heals in this life though. The Bible is full of times he has chosen to heal. And since our God is the same yesterday, today, and forever, I believe he still chooses to do so. But our healing is temporary, we all will die (I'm betting even Lazarus, who Jesus raised from the dead, eventually died again at some point...), and is only a small foretaste of the work God will do in us when we go to heaven and no longer live in a sin-filled world.

Maybe this doesn't help anyone else, but I needed this. Sometimes to accept the reality we are in helps us to face the coming days.

My reality today is that Annabelle is doing well. Hopefully going to the "floor" today! And I'm embracing every moment with her and the rest of my family.

And God is still Good. Every second. Every moment.


Mommy and her girls! Having all my girls with me was the BEST Mother's day present EVER!


My whole family... hopefully soon we'll have a picture of this on our couch... at HOME!


Mommy and Annabelle. Ahhh, what a way to end Mother's Day! (and ha, I just noticed Annabelle's like, Um, look at the imaginary time on my imaginary watch... time for me to get back in bed, watch some Veggietales, and go to sleep Mom. Also time to get this flower off my head! I can barely see!)

10 comments:

Tammi T. said...

Krista,
So nice to see the pictures of you with all your girls and then the family pic. I look forward to seeing the family pic that will be taken at home on the couch.

I love the passage you shared from Romans 8, too. What an encouraging passage and it only confirms what you said about Christians and suffering.

We continue to pray for you. May God bless and I hope and pray that God's timing for Annabelle to go home will be soon.

Christine said...

I love your pictures! No, we're not free of suffering as Christians, but we can do all things through Christ who strengthens us--our spirits and our souls.

God Bless!

Jean said...

What a difference a month makes for a little girl! Less than a month ago, she had so many tubes in her you had trouble finding a way to hold her.

This family photo shows an almost tube-free Annabelle (and a wonderful rest of the family).

I saw a headline for a little girl in San Antonio who is finally going home after 7 organ transplants, and she doesn't look older than about 2 years. What a joyful day for that family.

http://radio.woai.com/cc-common/mainheadlines3.html?feed=119078&article=8543178

Go Annabelle! Hang in there, Mommy and family.

Keli Gwyn said...

What wonderful pictures. I'm glad you had such a good Mother's Day and that Annabelle is doing well today.

Sarah Forgrave said...

Ha! I love that translation of Annabelle's thoughts in the last picture. You have a gift for writing poignant words followed with words that make us giggle. :) Praying for a homecoming soon.

Sherrinda said...

Awwww! What a special Mother's Day! I'm so glad it was a good one. It won't be long....:) Squeeeee!

Melissa said...

Krista,
You and your family will be in our prayers. I hope you will be able to take your little girl home soon.
Melissa Randall

wannagrowwannago said...

I am sitting here at the Children's hospital in Wilmington, DE....waiting for my daughter to drift off to sleep, reading your blog. I so needed to read it tonight. I sometimes feel a bit guilty when I know how impatient I am go home(we have been here for 5 months...not as long as you, but still too long....) when we have so much to be thankful for. Yet when I read the verse...which I knew...but needed the reminder...of us groaning inwardly, even though we have the Holy Spirit.....while we wait for the redemption of all things. I am groaning inwardly for home too, even though I am sure it is coming at some point...I want it to be now also. God understands the longing. I am 44 yrs old....probably more into the 3rd part of my life than you are...lol....our boys are already teens and we have one out of high school..we have started all over again with the adoption of our daughter. Ahsya (21months) had her heart day on April 12, 2011.....we were told average stay was 4-6 wks after transplant....and it will be 4 wks tomorrow. And we are still here also.....she is doing ok...but her blood pressure is WAY to high and she can't go home till that is down. We thought we were going on Friday but then her pressure started climbing and hasn't come down. I so relate to the feelings you post about. I was just sharing on our caringbridge site that as much as I want to go home...I am also a little bit nervous. I wonder if you are also nervous about getting back to life in general...especially---as you said..you will look back at this as a marker of you not being the same. Yet so much of home is still the same....so finding our "place" might not come immediately. But it will come. I was so glad to see the pics you posted with your family and to see you had a nice Mother's Day with them. Those times are much needed!!! God is indeed good!!! Don't know how we would do this without His Presence before us, behind us, around us and in us!!! I hesitate to ask as I know how busy life at the hospital can be..but I would love to maybe chat sometime after you are home. We have a website at www.caringbridge.org/visit/babyahsya if you care to leave an email...I have met quite a few folks here at the hospital, and it has also been a wonderful time of ministry..but I have not met many folks who share my faith in Jesus...many are "religous" and talk of prayer and God and angels...all of which I value!!!!...but I dont heare much about Jesus....I am so glad you know HIM!!!!

Tina Radcliffe said...

Remember that Annabelle and you and your family are already a ministry, touching lives for Jesus. I am blessed (and humbled) every single time I visit.

Thanks for the pictures too!!

Krista Phillips said...

THANKS everyone.

Melissa Randall... if you are the Melissa Randall that I THINK you are (the one I know from a loonnngggg time ago) you better e-mail me or leave me yours! We need to catch up girly!!!!

If not... well... sorry, HA!

wgwg: Absolutely I'd love to e-mail! I'll visit your caring bridge... but e-mail is just krista at krista phillips dot com. It totally know what you mean! Having someone who knows JESUS to share this journey with is SO SO SO important!!!! *hugs* Praying you get your "home" day soon as well!!!