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Thursday, April 5, 2012

3 steps forward, 2 steps back

Pin It I walked in to a puffy girl at 5am. She could barely move her head to say hello to me. She ate a few bites of cereal, drank an ounce of milk, drank some water and threw it all up. I talked to the doctor and they agreed, she was not right. Her O2s were riding in the low 90's to mid 80's and not really maintaining the higher numbers after her easy pap treatments. Her heart rate was high and she was not peeing :(



It was right after rounds that they decided to put her back on the ventilator and possibly put in a new chest tube. They also discussed the possibility of pneumonia.
Fast forward a few hours to now. She is sleeping peacefully and has the ventilator down her throat. She did not need the chest tube, her lungs are very wet but they are not causing the problem. Her heart is causing the problem. They did an echo cardiogram  but the cardiologist is in surgery now so it has not been read yet. If it looks like they need more data to find the problem she will need another heart catheterization. That would make 3 in 10 days. My heart breaks for all she has had to endure and continues to endure. Here I was feeding her until midnight last night to get her strong and back at 5am this morning with my bowl of oatmeal, whole milk, peanut butter and yogurt smoothie just so she wouldn't need a tiny feeding tube. Never ever would I have guessed she would be having a ventilator put in her throat by noon! I so badly want to protect her. I want to tell her we are almost done. I want to take her home, healed! Yet we were warned, 3 steps forward, 2 steps back! Yesterday was  like an early Easter surprise. I would have never expected to spend the day holding Ivy, playing with toys, Seeing her sit up, feeding her!!!! I can look forward to the next time we have one of those days! Lots of those days!!! And they will come! Pin It

31 comments:

Anonymous said...

Plead God, shine hard for this sweetie.

Anonymous said...

OH NO! I am soooo sorry! You know the prayers are still coming strong and Ivy will pull through this. I just know in my heart God has BIG plans for her in the future!!

Please keep us all posted. I know you guys will get through this. God is good. God is good.

Love,

Sharyn

Anonymous said...

Praying!!!!!!!!!!

Darlene said...

Praying!

Anonymous said...

Dear God, please, please, please heal this little angel you created. We look so forward to meeting her and Alexandria wants to go play with her China sisters. God Bless you all. major hugs your way!


Annette

Suzanne said...

Holding you and Ivy ever close in prayer.

Jennifer P said...

I'm sorry for the tough day. Hang in there. Praying for you all.

sierrasmom said...

Continuing to pray for Ivy here in NY. God please touch your hand to sweet Ivy's heart!!! Guide the doctors as they make decisions on how to proceed!!
Kathie

Kim said...

Oh my, I'm so sorry for this roller coaster ride. Praying!!

Prayers from michigan said...

Every day I ask my wife "how is Ivy today?" we are adopting Meilyn, a little girl from china who has TGA. I want you to know that we are thinking of you, praying for you, and asking others to pray for your family! you and your family including Ivy. We are learning so much from your journey....Thank you,

Lori said...

Hang in there, Mommy! Jesus is still shining through you and your precious girl, even when it hurts! Lean hard into His all-sufficient Grace and allow all of us to stand in the gap for you! Blessings from Florida, Lori McCary www.lorimccary.com

Mélanie said...

It's ok she needs help! When my girl got her surgery they put her back three Times on the ventilator, the nurse told me: you think it's a step back but she's tired and she needs help... It's to go further next Time!

We are actualy in the intensive care got a surgery tuesday and probably another one next week... We have to trust!


Melanie

Wendy said...

I'm a newby to your site but wanted to pass on my prayers for your sweet baby girl and your family.

johnjohntwo said...

He has not abandoned you ... he still SHINES ... but His plan and His schedule may remain a mystery for a while.

Ivy is a Giant and He uses giants for special tasks.

His love and respect for this child and her new family is forever. You are Blessed.

We will just have to re-double our prayers

John C.

Kristi said...

Her little tiny body was so sick, for so long, and now she has been through so much. She needs time to heal. Your attitude is so remarkable. I wish you continued peace and joy in even the smallest victories!

Carmen said...

Remember to put on the armor of God.
Praying for you and your sweet baby girl.

Kristi said...

Hang in there and keep the faith!
She's a fighter for sure and her coloring looks fabulous.....baby steps following such a major surgery. I can literally feel ur love for Ivy thru ur words..so sweet and special...just like Ivy!
Praying for Ivy's strength and continued healing!

ashley said...

God, bless this precious child. I pray for miraculous healing as she rests. Your ways are so great and so beyond our comprehension. I pray that her amazing mama and family are clothed in your loving embrace. Amen.

Praying so hard for Ivy! Praying that we can see her shine!

Anonymous said...

We continue to pray for your family and ask the Lord for peace in your heart and protection over your precious girl. Every time I read your posts, it takes me back 8 years. Our children's paths are so similar. My Blake also ended up on CPAP and had to have diaphragm surgery. It's so hard for us to watch them go through this. Your family has touched my heart and I remember so clearly pleading with the Lord to allow my son to be healed and have a break from the procedures. We care very much and pray that God will show the doctor's EXACTLY what they need to do to get your sweet girl home.

Love to your family from ours.
Angela Livesay

Leah Mei said...

I am at a loss for words. Your strength amazes me and I know it comes from the clear faith you have. Ivy is a precious and strong little girl who has already endured so much. God must have such plans for her. I pray for strength for all of you and quick healing for your baby girl.
Daisy

Catherine said...

So sorry....praying.

Curt, Pam, Ryan and Carissa said...

So sorry to hear of the set back. The Lord is in control and we will continue to pray for your precious little one. I so remember reading Jaime Kinsers blog and all the set backs they endured and now look at her and getting better all the time.

Heather N said...

Noooooooo...I was so hopeful. I still am, but feel so awful for what your baby has to endure again. Ok. Back to praying for her.

Shelley said...

Prayers for your beautiful Ivy and the rest of your family. Recovery from these heart surgeries can be long. My son is 9 and had his TGA surgery as a baby. He too was put back on the vent after an unsuccesfull run off of it. Stay strong. Our recovery was longer than others, but he is great today. They will heal at their own pace. Take care.

One Happy Mama said...

Oh Mary, sorry to hear this, praying for you both. Nancy

Laine said...

Praying praying!

Luciana said...

Lots of faith in our wondrful creator.

Teachn18 said...

Continuing to pray for your sweet girl. God has his hands on her, and he is working a miracle. Praying for this time so Ivy can continue to heal. She's a fighter!

Much love and prayers,
Krissy

Mary said...

Hi Mary -- I'm a friend of Diana's, and can't remember if I've posted yet, but just wanted to let you know that we are praying for your sweet girl, and for your entire family. And this is a weekend for miracles, isn't it?

Mary (another one)

Paige said...

praying for all!!!!

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