Monday, April 11, 2011

Minor Setbacks and Miracles

Original plan was to extubate yesterday.

Revised plan was to extubate this morning around 8 to 9.

Rerevised plan was to extubate around 11 to 12ish.

ReReRevised plan is to MAYBE extubate later today, but if not, hopefully tomorrow.

ReReReRevised plan is definately not today, hopefully in the morning.

Goal: Extubate and NOT HAVE TO REINTUBATE (as is Annabelle's history!)

We've had a few concerns with some pressures in her heart that were high, but they came down a little, so that was good. Biggest problem now is fluid balance. They put her catheter back in (they'd pulled it yesterday) and started her on a lasix drip as well as back on Diaryl to get fluid off of her.

She has done a few CPAP trials, failed a few, passed a few. Letting her rest and will start some tonight and do them every 4 hours during the night. As long as she passes them, we'll extubate in the morning.

She's starting to wake up a little more (and not look like she wants to strangle us...) so this is a good thing! She has had a string of nurse visitors saying "OH MY GOSH SHE GOT HER HEART!" which is fun! She has a big sign on her door for everyone to sign as a keepsake! Will post a pic of it later!

Miracles:

Had a comment on a previous post that I thought important to address.


"While it is amazing and wonderful that organ transplants are available to add a silver lining to a tragic situation, I think it is somewhat disrespectful to call this a miracle. God allowed another innocent and beloved infant to die. Your child was able to be saved as a result, but God still allowed that other child to die. I doubt the parents of that other baby think that this was a miracle.

Regardless, I certainly pray for the best outcome in a less than ideal situation."


While I don't agree with the sentiment completely, I understand it.

Personally, I don't believe calling it a miracle that Annabelle has a new heart disrespectful. If a donor family feels that way, then my heart truly breaks for them because that is NOT NOT NOT my intent.

I don't believe a baby dying is a miracle. It is a part of life, a very sad, sad unfortunate part. It breaks my heart that any baby dies, and I know this because Annabelle has been on the verge many, many times. I've also seen one too many babies in the PICU go home to be with Jesus, including the son of my very good heart-momma friend, and my heart absolutely aches for their parents. Never would I suggest that a baby dying is a miracle, regardless of organ donation status.

But we all have a certain number of days in this world. For some, it's a few hours, for others, they live until they are 100. For most of us, it's somewhere in between.

As a mother of three healthy children, I can honestly say that if one of them were to have an accident and go home to meet their Savior, I would count it as a miracle of God that he's given doctor's wisdom and ability to be able to prolong the life of another child and give hope to their family using the tragedy that we would go through. Would I like it? Nope. Would I rejoice in the death of my child because of it? Of course not.

But I would thank God for causing good to come from bad. I would rejoice that all was not in complete vain.

Life happens. Death happens. Illness happens. It is a reality we all have to face. Some may disagree, but the Bible never says Christians, or innocent children, will be immune from it. Suffering is a part of life, and if we let it, can make us grow stronger.

I won't address this anymore after this, but wanted to make sure I was clear on the point of how thankful I am for the donor families willingness to let life happen from their tragedy. Being the recipient of a donor organ is very humbling, and I will NEVER forget the gift they gave, the choice they made, that changed the course of my daughters life.

Will update again tomorrow... hopefully when she is TUBE FREE!!!!


Resting with her dolly


I love this! She keeps rubbing her nose... not sure if it itches or if she's not using there being no nasal canula there!

Waking up!!! "Mom... what are these people doing to me?? Where there is a stupid tube down my throat??" Then she just says, "ah, I think I'll back to sleep..." We're playing all the music she likes in her room today too.. I think it's helping! And she kinda held onto one of her toys too, FUN STUFF!

39 comments:

Krista Phillips said...

One more note: While I don't agree with said commenter completely, I believe in the right to express ones opinion... and I believe in showing EVERYONE Jesus' love, so please, if you don't agree or don't like what they shared, let's still be loving and kind!

Don't make me join hands and sing Cum-bi-ya (no idea how to spell that...) Really... you do NOT want me to sing!

Linda said...

Hi Krista,
All I can say is that you're amazing! I pray the Lord continues to give you strength (along with the rest of your family and others who closely assist you). We continue to pray for Annabelle and look forward to what the Lord has in store for her life. You are such an inspiration! I bless you today :o)

Linda

Anonymous said...

Very well said, Krista! I could not have said it better in a million years. Keep that faith and we'll all keep praying!!
Kristy Branson

Mrs. Curry said...
This comment has been removed by the author.
MaryC said...

Please ignore the deleted post above. I was signed in under the wrong account.

Krista, thank you for giving such a detailed and honest update. I've been holding my breath all day waiting to come home and check how Annabelle's day had gone.

You have been such a model of grace and graciousness, not to mention faithfulness,throughout these past 8 months. It has been an honor to follow along and pray for your family. I will continue to lift both families in my prayers.

Terri Tiffany said...

I have been blessed by your attitude through all of the ups and downs you have endured. You are amazing and I am so happy to read this good good news.

Julie Jarnagin said...

You're handling everything with such courage and grace. God bless!

Cheri Horgan said...

I doubt any of us were thankful a child had to die, but that their heart still beats inside of our precious little Annabelle is certainly a miracle any way you look at it. I am sure it would break the donor family's heart to know someone tried to take the joy and amazing love out of this sacrifice. They chose to donate that heart to allow another baby to live, it was not a forced decision, and as such they will forever be remembered anonymously for their unselfish love. The miracle in the timing, fit, and acceptance is all God's work. Someday when Annabelle is out sharing her testimony, she will change someone's life that might have never been touched or changed if it had not been for her...and that will also be a miracle. We may not ever know this baby's name, but I hope their family knows that thousands of us believe that baby died a hero in our eyes. Still praying, Cheri

Sherrinda said...

Cum-bi-ya-ya-ya-ya-ya!

Makes me want to light a fire, pull out the marshmallows, and toast to your character and Christ-like spirit.

Well said, my friend, well said.

Bridget said...

Krista,
I learned of Annabelle thru a friend and am praying for her. Continue to rest in the Lord. Although we do not understand why God allows some things to happen we do know that in a bad situation God can and will bring about good. May God give peace and comfort beyond all measure to the donor family and strength to you and your family as you ride this roller coaster with your precious Annabelle.

The Real Life of a Red Head said...

Krista,

I know you are going to address this again, but I wanted to share my thoughts.

We have been on the other end of the spectrum. Our son died. Did I think it was a miracle? No. But was there a miracle mixed in? Yes. The miracle is that he is in Heaven- with a whole and healthy heart. That Jesus came, to save my son- an innocent child- and give him eternal life. The miracle is that he is no longer suffering.

And if we had donated his organs (I wish we would have thought about it, or that one of the doctors would have suggested it to us- our minds were blank and didn't even think about it...) it would be a miracle that part of his physical body is allowed to live on and give life to another baby.

You are exactly right in saying that life will give us sick and dying babies. Our family knows that all too well. Organ donation is a double edged sword....a baby has to die to give life, but fact of the matter is is that there are going to be babies, children, middle aged, and elderly people who die. And for as much as it SUCKS, it's part of the consequences of sin.

Know that you and your family have been prayed for and are loved.

Jill

Jessica Nelson said...

This is a beautiful post. I'm praying for you all and baby Annabelle.

Anonymous said...

Mark 11-24
"Therefore whatever you ask for in prayer,believe that you have received it, and it will be yours."
james 1.6-7

Karen Schravemade said...

This brought tears to my eyes. You have such a beautiful spirit.

Anonymous said...

Krista, there are no words to truely say how much I admire your strength, grace, faith and spirit. I'm so so so happy for you and Annabelle and your family. I'll be praying tonight and in the morning for safe extubation. I hope we can make a trip to TN next year and meet Annabelle. You speak so beautifully, even in the face of something so uncomfortable...nicely done!!!
Love, cousin Tracy

Anonymous said...

Your post was well written.

I think it is a miracle. Because let's say you have 2 very sick babies. The fact that one baby died is so tragic, but that baby gave life to other one. If that baby wasn't a donor for the other baby, then both babies could have died and that's even more tragic.

I will pray for you and your family. Just remember you are doing the best you can with the situation you are given. Of course people are going to always have their opinions, but remember this is your life and this heart is a special part of your journey. God Bless!

Anonymous said...

I have been following Annabelle's progress for several months now. Her name is on a sticky note on my computer and I pray for her and think about her many, many times a day. Organ donation is an intensely, personal private decision, and one that I am sure the donor family thought about very carefully. It is a miracle that Annabelle was able to receive this blessing and gift. The true miracle is the Jesus was in heaven to receive their child and Annabelle received the ultimate gift from a very generous and loving family. You have taught me a lot as I have read your blog posts about patience, love, and the power of prayer. May God continue to bless your family, as well as the family of the donor. I know God will bless them as only HE can!

Leslie Gilmore
Harker Heights, Texas

Anonymous said...

I’ve been following your blog about Annabelle since I saw it mentioned on Matt Hammitt’s (baby Bowen’s) blog a while ago. Ever since then, I’ve been praying for you sweet Annabelle. It breaks my heart for “the other family” but I’m rejoicing for your family now! I’m so glad God gave her a heart in His perfect timing. She’s going to grow up to be a great woman for Him! Thank you for sharing your story.
“But anyone who trusts in Him will never be disgraced.” – Romans 9:33
-Aly

Anonymous said...

Krista, my own little granddaughter can only be saved by a heart transplant, just as your Annabelle. So I have thought about the conflict you are facing.

I'd just like to say that although God doesn't cause our suffering and death, He is able to use bad situations for good. This is one of those situations. In fact, I like to think that the organ donor/transplant recipient is one of those "mysterious ways" in which God works, "His wonders to behold."

One thing is certain: the donor gift is among the most priceless blessings on earth.

May God bless each of your families, and may our own little Emma Janae, who is six months old, be blessed with a new heart one day, too.

Hugs from
Emma Janae's Nana Jana
[www.emmajanae.blogspot.com]

Anonymous said...

The last time I read your blog was April 7th the walk. I was once again brought to tears and amazed at your strenght. I wanted to leave a comment saying you will make it around the curve soon but I didn't. Some days I check on Annabelle 3 times and there are no updates so this weekend I took a break. Monday evening I checked and Praise God! I was thrilled. I started jumping up and down and telling my daughter (born July 26the with Hypoplasitc Right Ventricle) Annabelle got her heart, she just beamed with the biggest smile. We have been praying for you a ton and have been encouraged by you Krista more than you can know! I am so thrilled I'm crying, laughing and praising God! We love you Annabelle!!! Thank you Krista for everything. We will continue to pray pray pray for sweet Annabelle and your family! I just want to shout!! I'm SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO happy for you all!

With love and many prayers and Thanks to god!
Still praying in Canada
Shannon

Deanna said...

I learned of Annabelle and your family through @matthammitt on twitter. I have been praying for her ever since and I am glad to see her great progress and her new heart! My roommates dad is an donor heart receiver and I know how exciting it is to finally make it this far.
I was actually wondering if there is a music therapist at the hospital you are at? I know you mentioned that you are playing her favorite music, which is awesome! I am a student studying music therapy and I am a HUGE advocate for my future profession. If there is a MT available, I would highly recommend looking into it for Annabelle and your family!

Krista Phillips said...

THANK YOU everyone for your encouraging comments!!!

Deanna... I'm a HUGE believer in music therapy! My husband plays the guitar and sits for hours playing for Annabelle some days! So I guess we have our own, built in music therapy! Of course, we also have CDs we play at night for her... but she loves her daddy's playing best!

Hope's Blog said...

Wonderfully written post. I am praying like crazy for extubation to be successful and the doctors to know when to do it. I know Annabelle has had issues with it in the past, so I will be saying extra prayers that all goes well.

Deanna said...

That's awesome! Music therapy research has shown to regulate heart rate/oxygen sats and other physiological issues as well. If music is already a big part of her life, I know she'd do great in music therapy and benefit from it as well!

Tara Wilhelm said...

Krista, I love your loving spirit! I continue to lift Annabelle, you, and your family up in prayer. Karalynn was so cute when I had her share her wonderful news with the class. Even more so, was the joy we shared when she came to class. We practically danced in each others arms!

Sarah Hammitt said...

You are in my thoughts and prayers all day long. We are so happy for you:)

Hollie said...

She is gorgeous!! Sending up prayers. May god continue working his miracles and healing!

Danica/Dream said...

Thanks for sharing Krista. I love the thoughts you express here. Praying for your family, and for Annabelle.

Janice D. Green said...

As sad as it is than another infant had to die to make it possible for Annabelle to get a new heart, I think most organ donors want to see something good come out of their personal tragedy. This is a form of therapy for them too. The person who wrote that comment may be suffering from a great loss and needs prayers and healing as well.

Courtney Walsh said...

Krista,

It is so so sad that a baby had to die--and I think you said that in one of your pre-surgery posts...that another family was grieving and going through something unimaginable...but to know that that little baby gave Annabelle the gift of life, well, that IS a miracle. And I am still praying for all of you. I do understand and love the way you've addressed this here. I can't pretend to understand what any of you are going through. All I know is there are a whole lot of emotions mixed in and I think you have to let yourself feel every single one.

Lynnette Bonner said...

Krista, I saw on the loop about your little one and just wanted to drop by to say how happy I am that the surgery went well and she is doing well in recovery.

Praying for quick healing and that God will let you take her home to her family soon.

I've also prayed for the donor family. How hard, but yes I agree, a miracle that such good can come from such tragedy.

Anonymous said...

Praying for all of you! What wonderful news!
Blessings, Verena & family

Christine said...

May God bless you for your insight during this time. I am praying for your daughter.

Blessings!

Jenn said...

Krista, we are still praying for Annabelle's recovery.
I also want to say that those of us who have been following along know from your previous writing how grieved and torn you were about another child dying.

But no one can deny the miracles in all of this. The fact that God allowed Annabelle to be in really good shape to receive a new heart, the fact that she did not have to be on ECMO for days, the fact that her body accepted the new heart so well... there are too many to count.

And there is also the fact that another family, in the middle of unbearable grief, were able to see the potential of life in their child's death and give such a precious gift to your family... that is a miracle too great for words.

And while I understand the commenter's sentiment, I also think they too easily dismiss the trials and suffering your family has endured. It's not as though one child died and now you and Annabelle get to skip off gleefully into the sunset! (Oh that you could!)

You have been through so much, and Annabelle has been through so much, and there will be more to come when she does get to go home... but through it all you have been so amazing in your ability to hang on and trust God. Annabelle's story has given so many people hope and you have done a beautiful job both as her mama and her narrator.

Lis said...

Blessings to you Krista! ~Lis

Tammi T. said...

Krista,
Thanks for the update. We're still praying for all of you. Hope you're all home soon.

Mary Connealy said...

Keeping all of you in my thoughts and prayers, Krista.

Carla Gade said...

Praying for that precious little one, for comfort for the family who lost their own, and for a peace that passes understanding in the midst of a very difficult time for all of you. It is only by God's grace that any positive can be found in such a trial. Keep focused on your blessing. I know you hurt for the other family deeply, but please do not let this rob your own joy and peace of mind. You are a great inspiration to all of us.

Kit said...

I have to say that it is amazing to see her "pinking" up, and while I can understand the tragedy that the donor family is going through, I believe that whatever the circumstances that brought that little child home and your daughter a heart is a miracle that allows that donor's family to live on.

God Bless your strength and your family!