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.