Monday, April 18, 2011

A New Plan

Harper had another echo cardiogram this morning. Because of the symptoms she is starting to show, Dr. Robinson wanted to make sure everything was the same with her heart and rule out any new problems as the cause of these symptoms. The PDA is still closed and there aren't any new problems, such as back flow of blood through her valves.

So this means that everything happening is a result of the hole in her heart and now they have to decide how to move forward.

Our new plan is this:

Harper will only attempt to eat from a bottle once per day. The rest of the feedings will be given through her feeding tube to help her conserve as much energy as possible. We want the very most growth we can get the next few weeks and we don't want her to work at all. Eating from a bottle might as well be running a marathon for my sweet, little Harper.

They have started adding supplemental calories to my breastmilk to help her grow even more. She has gone from 18 calories per ounce to 24 per ounce and as long as she can tolerate it, they will try to get up to 30 calories per ounce.

We wait for a couple of weeks. Then, in 2-4 weeks, they will go ahead and do the major repair surgery to patch the hole in her heart. This news really took me by surprise, but a whole team of doctors met on her case this morning and all agreed this is the best course of action.

The exact time that they will do the surgery will be dictated by Harper herself. If she is stable enough to make it 4 weeks, then we will wait that long. If something just absolutely must be done in two weeks, then that's when we'll do it.

Of course, considering how quickly her energy level has dropped, there is a chance that something must be done even sooner.  Dr. Robinson mentioned the possibility of Harper ending up on a ventilator if she is too weak to breathe for herself.  If that happens before she has had time for adequate growth, then Dr. Robinson will go ahead with the PA band but, he really would like to avoid that procedure.

The whole thing terrifies me just because I thought we would have more time for her to get bigger and stronger before undergoing major heart surgery.  But at the same time, if we can get little Harper to grow and get through this surgery successfully, then the worst of all of this will be behind us so much sooner than we thought it would be. 

It's going to be a hard two months. I tear up every single time I think about Harper's tiny body having to endure all of this. I tear up thinking about how long it will be before I'm with my sweet husband and my sweet boys at home. All we can do is take this one day at a time and lean on our family, our friends, and most of all, our God who has certainly given us strength thus far.

Thank you for the support you've been to us. Every prayer, every comment, every phone call, every text...they help so very much.

Please keep praying for Harper. Pray for growth. Pray for stability. Pray for strength. Pray for comfort. She is such a sweetheart and I know that there are great things in store for her.

12 comments:

Ophelia said...

Dear Amy & Dustin, every time I pray, I say a little pray for Harper and you very Esp when I'm in Church. Just keep on trusting in HIM. God bless.

Crystal said...

Praying. ((Hugs))

Jacki said...

Prayers going out to your sweet family!
Miss Jacki!

Bekah said...

You are such a strong christian and such an inspiration to me. I will continue to pray for sweet Harper and you and your family!

Megan said...

Praying! To quote from a Mandisa song (I know I go a little overboard on the CCM stuff sometimes!):

Hold on and let Him hold your hand
And go on and fall into the arms of Jesus
Oh, lift your head it's gonna end
God's right there
Even when you just can't feel Him
I promise you that He still cares


'Cause if He started this work in your life
He will be faithful to complete it
If only you believe it
He knows how much it hurts
And I'm sure that He's gonna help you get through this

Steph said...

Thinking of your sweet girl. I found your blog "by accident" a few weeks ago. We had our 4th baby 11 days ago. He ended up in the NICU with pneumonia and pulmonary hypertension. It was the hardest 10 days of our life trying to juggle life with three girls at home with their daddy and our sweet boy fighting in the NICU.

I hope you are able to bring your sweet little princess home soon to be together again with your boys.

I can't imagine having no immediate end in sight. I remember when they told us we'd be going home, and it didn't happen - so discouraging.

Hang in there!
Stephanie

A and E Gourmet Candles said...

Amy and Dustin....you know that our hearts and prayers are with you both and you dear sweet children. Let God hold you in the palm of your hand...... doesn't that sound like it would feel so strengthening. You are both so strong and we love you so very much!
LOVE,
Grams and Grandpa Ed

Bruce said...

Dear Amy and Dustin,
We are praying. Hang in there. One day at a time.
Love Bruce, Fiona & Jess

Katlynn said...

You, Harper and Dustin are definitely in our prayers. Y'all are so strong, your children couldn't be blessed with better parents.

Elizabeth said...

Fervently praying for you Amy & Dustin. Hang in there while leaning on each other and mostly God. Praying for strength and comfort for yall daily. Love,Elizabeth

Bethany said...

It's so wonderful to hear that God has sent you such skilled doctors to care for your little princess :) I'm praying for you and your family, Amy! God bless...hugs, Bethany Anne

Anonymous said...

Please know that our family is thinking of yours--I get my updates from Randy and your blog. Many prayers are going up for Harper from this part of the country. Linda Gage and family

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