Sunday, June 19, 2011

Hospital Days 5 & 6

It is so much easier to blog when I have great things to share about Harper's recovery and progress, but part of the reason you haven't heard from us in a while is because we've had a rough couple of days.

Thursday morning, Harper had an echo cardiogram done. Dr. Harrell was in the room and after looking at the patch area, he determined that the leak in the patch (which we knew about immediately after surgery) was about 2.5 mm. Of course, we asked him what that meant and if he was concerned. He said that he didn't want to minimize the situation because basically it means that Harper still has a hole in her heart, but it is small enough that they don't worry too much about it. A hole that small should close up on it's own and not be a problem as Harper's heart grows.

So, we felt okay about it and we were relieved that even though it wasn't a perfect outcome, the residual hole is small enough to manage with medicine for now and it should close up over time.

Unfortunately, after Dr. Robinson studied the echo a little more, he determined that the hole/leak was more like 4 to 5 mm in size. This is a big difference. Dr. Harrell talked to us about it Friday morning and said that normally, they would do something about a hole this big, but because the surgery was so incredibly difficult the first time and he hardly had enough tissue to sew the patch into, he doesn't feel that there is any way he could come out of another surgery with a better outcome at this time. He wants to wait about a year until some scar tissue can build up and then go back in and do another repair. In the meantime, we manage Harper's symptoms with medication.

This news was really hard to take. Our hopes of Harper's heart being all better are gone for now. I spent most of the day just mourning the loss of the expectations I had to leave here for the last time with a good heart for Harper. I also just feel sorry for my sweet baby who would have to go through this again...and struggle a little in the meantime. In addition to that, I just didn't know what this all meant for us. Will we have to continue tube-feeding? Will she still need her monitor? Will we still not be able to leave our house? A year seems like a really long time.

It was a really, really hard day.

But yesterday morning, Dr. Robinson came and talked to Dustin for the first time since the echo had been done. He was able to explain it a little better from a cardiologist standpoint rather than the views of the surgeon, who doesn't necessarily deal with the clinical/medical management side of things.

Dr. Robinson said that they aren't exactly sure how big the hole is, but it's somewhere between 3-5 mm. Dr. Robinson is a little more optimistic that she may not need surgery down the road. He is hopeful that the hole can be managed medically for now and as she grows, it will be less of a problem for Harper and won't need to be addressed surgically. Unlike the original hole that grew with Harper's heart, this hole/leak will stay the same size as Harper's heart grows bigger around it. That fact, combined with the possibility of scar tissue building up and making the hole even smaller, could mean that Harper won't need anything done in the future. In the meantime, he doesn't feel like Harper's symptoms will be very bad. He feels like she should definitely be able to eat on her own and we can continue on the medication she was on before surgery to keep the fluid off her lungs and help her heart beat the most efficiently. Considering what Harper was working with before surgery, her heart has been improved tremendously.

So, it's more waiting...more not knowing...and more praying. We were definitely encouraged after talking with Dr. Robinson.

I want so badly to understand know why this precious girl has to go through all of this. I can't help but think that these trials are meant to teach me some lesson....some lesson I didn't learn the first time with Eli and Landon. Dependence, prayer, hope, faith, or all of these things that I must be lacking.

But I know better. I know that while I may be strengthened in some way as a result of this, it's just something that happened. Even though I was hoping so badly that we could be done with all of this, I have faith that God has protected Harper thus far and He will continue to be with us while we wait to see just how this leak in Harper's heart will effect things in the future.

In addition to these things, Harper has had a rough couple of days. She is in more pain and since they took her last IV out, she can't have morphine. She is only on tylenol and it doesn't seem to be doing the trick. It is just awful to sit here and watch her be this uncomfortable. I would rather have ten times her pain than to sit and watch her be in any pain at all. They keep trying to convince us that she shouldn't be in any pain at this point, but I'm not buying it. There is definitely something wrong with my usually happy girl.

Hopefully we'll get past this part of the recovery process quickly and she can be a little more comfortable. She has had all of her chest tubes taken out, all of her IV lines taken out, and her pacing wires removed. She just has all of her exterior monitoring leads, a feeding tube, and she's still on just a whiff of oxygen that we can't seem to get her weaned from.

There is talk of us going home mid-week, but I'm not sure I'm ready for that. I want to make sure we know exactly what Harper's body is going to do in reaction to her heart before we leave here. seems like we've gone from the best of the best nurses to the most inexperienced nurses and that is frustrating and making me long for home. I personally think I make a pretty good nurse for Harper and no matter what it is that she ends up needing, I consider it a privilege to be the one who gets to do it for her. She's a real sweetheart.

Here she is at this very moment...finally resting after being up most of the last 24 hours. I just can't wait until she feels better. This is sure tough on a momma.


Anonymous said...

Dear Ones, GOD will take care of you. We send much LOVE and prayers.Grandma and Papa

Fiona Smith said...

Hang in there Amy - we are praying for you all - for what it's worth when I read about the healing that the Lord did while on this earth I can only be absolutely convinced that illness, death and sickness are not something that He condones but something that happens as a result of the world we live in. I know He is with you, I know He holds us close when it is hard and difficult and impossible to understand and maybe we are not meant to understand but just meant to accept and hang in there with His strength.
I am teaching at a girls' camp this week up in Virginia and there are so many broken families and struggles with these young girls and all we can do is love them, teach them and be there for them. Who can know why bad things happen when we are trying to do the best we can???? I remember the orphans I worked with in India and they had nothing, not even a family to care for them, and it breaks your heart but we would love them and teach them and be there for them and that was about all we could do. You want so much to fix it all and make it all okay for them but you can't and so you cry with them and hurt with them and pray for them and .......
My heart goes out to you because I know this is very hard and difficult but I do know that the Lord healed and the Lord raises us from death and these things are not something okay.
We used to say to one another when we were struggling "let God hold you in the palm of His hand and feel it with everthing within you." It doesn't make the pain go away but it does help.
Our Lord and Father is not a God who keeps us at arm's length. Lean on Him.
Love you

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