I haven't updated you all on Harper lately...mostly because there wasn't much to say. Things were going well, we were loving our new, normal life, and Harper's appointments had shown no changes to her heart.
Until two Thursdays ago.
We saw Dr. Robinson on the 4th and while doing an echo cardiogram, he found some less than desirable things going on with Harper's heart.
We knew at the time of Harper's surgery, that considering how complicated things ended up being, the surgery went extremely well. But it didn't go perfectly. Harper still had a hole in her heart, the exact size unknown at the time.
At her appointment several weeks ago, the hole measured 2.2 mm and Dr. Robinson still mentioned the possibility of it closing up on its own.
Unfortunately, at her appointment on Thursday, we discovered that the hole now measures 3 mm and there is increased blood flow and pressure through it. The possibility of this hole fixing itself is....well it's gone.
Her heart is still broken and now...so is mine.
What this means for Harper is that she will most likely need to have the exact same surgery again. I was so optimistic, so hopeful, so sure that we were past all of this. We knew this was a possibility, but I hadn't even entertained the thought of it actually happening and I'm having an extremely hard time coming to terms with this.
The first few days after finding out, I felt frustrated, sad, angry, and scared. We could have lost Harper the first time and I'm terrified of facing that again. Most of all, I don't want Harper to have to do this again. It just doesn't seem fair.
I don't know any specifics. I couldn't even muster up the courage to ask any questions on Thursday. Dr. Robinson in his gentle, compassionate, but straight-forward way told me to go home and love my baby, enjoy her, and let him worry about her heart for now. And while that seems like a ridiculous request and I won't be able to follow those instructions completely, I intend to try.
I feel like I've been cheated out of so much time with Harper already. I can't let myself be consumed with worry or stress about this because it's just allowing the situation to control me and it's not fair. It's not fair to Eli and Landon, to Dustin, to Harper, or to myself.
I really hesitated to even tell anyone because I don't want this to define us like it has for so long. I want so badly for things to be okay...for Harper to be well, that sometimes I just have to pretend that it is (yes, I realize that this is called denial and I'm okay with that.)
There is a small chance that she won't have to have surgery, but I can't even let myself hope for that. The disappointment just hurts too badly and to protect myself, I just have to prepare to face this surgery again.
My poor, sweet Harper. She's the most precious little thing in the world. I don't understand why this is happening to her, but one day, she's going to be amazed at how strong and brave she was, even as a tiny baby.
We pray that the conditions for surgery are perfect, that when the time comes, they will be able to close this hole up once and for all, for peace and understanding as we face this situation again, for Harper's continued strength and ability to fight, and for God to be glorified as He has certainly accomplished great things on such a little body. May He continue to bless us and watch over Harper in the coming months.
We will see Dr. Robinson again mid-September and I already have a lengthy list of questions for him. I am anxious to get answers and clarification as well as see what changes there have been to her heart.
We have gotten through this once and we will get through it again, but not without the help and prayers of our friends and family. This past year has been a huge lesson in dependence (among other things), but with that dependence on others has come the assurance that I am never alone in my struggles and for that I am so very grateful.