I have been putting off writing this update for about a week now. (Well 8 days since we met with the pediatric cardiologist….but who’s counting, right??) I wanted to be able to write when I would be more calm and not super emotional.
We met with the pediatric cardiologist at Children’s Hospital last Monday. We did not get the news we were hoping for. Well, Tim did, but I didn’t.
See, I didn’t know that he and I went into this appointment with such different perspectives. He was going in preparing himself for HIS worst-case-scenario which was that we would not be able to meet our little girl. That this heart condition would be fatal.
That was not MY worst-case-scenario! The perinatologist said that this was not in the life threatening category, so I couldn’t possibly even let my mind go there. I just couldn’t. MY worst-case-scenario was that she would need surgery. I was praying that God would heal the hole in her heart and the doctor’s wouldn’t see anything. Or at least that it would be small enough that she may need some monitoring, but that it would close on its own with no more intervention. Surgery was the worst for me.
The pediatric cardiologist confirmed what the perinatologist said last week. MY worst-case-scenario!
There is a hole in her heart and her aorta has grown a little bit off from where it is supposed to be. This kind of hole is not one that will close on its own. Because of the size of the hole and the placement of it, unless God decides to miraculously close it, she will need to have open heart surgery as an infant.
The condition is not so severe that she would require IMMEDIATE intervention. After probably a week or a couple weeks she will need to be put on heart medication. Because of the hole she will experience heart failure SYMPTOMS, NOT heart failure, but the symptoms. The medications will help deal with the symptoms (fluid on the heart, etc.) until the surgery. She will also get tired easier, especially while eating. Her heart will be working a little harder than normal to pump the blood because of the hole and the blood not getting pumped properly. I was assured she will not be in pain, it’s just like she is exercising, so she will become more tired easily.
They will continue to monitor her closely to see when we need to do the surgery. This will happen somewhere between her being 2-5 months old. This gives her time to gain weight and grow a bit before going through surgery.
It will be open heart surgery. She will be put on a heart and lung machine – her heart will need to stopped and the machine will pump her blood and breathe for her. The surgery will take 4-5 hours. About the first 1.5 hours will be prepping her, then the actual surgery for 1-1.5 hours, then recovery. I won’t be able to hold her for the first 1-2 days but will be able to see her. She will be in the hospital for about a week and recovery will take 6-8 weeks.
Right after she is born she will be taken to the NICU to be assessed and given an echo of her heart. She can then be returned to me if everything is ok.
There, I got it out. FACTS. That’s all I can deal with most days… just the facts. Remove the emotion and just relay FACTS.
We are trying to look at the things that we DO have to be thankful for. This was much easier for Tim since this was “good” news to him.
So, in the spirit of Thanksgiving this week, even though my heart is aching and breaking, here is what we are thankful for in this situation:
- We live very close to Children’s Hospital and great doctors. There are people who travel from around the country to get here, and it is close to home for us.
- She should be able to lead a normal life after all this. There shouldn’t be any restrictions on sports or activities as she grows up.
- The hospital takes our insurance and it appears that we won’t go into horrible amounts of debt with all of this!
- There is no indication at this point that it is life threatening.
- The people at Children’s have been so good to us so far!
- She does not, at this point, have to have surgery immediately after birth.
- It looks like, hopefully, I will still be able to breastfeed. It will be a lot of extra work, but I think we can make it work.
- She has SO many people praying for her.
- We will have an easy “modesty marker” when we go shopping for clothes….”if I can see your scar, the shirt is too low cut! PUT IT BACK!” 😉
But this is really, really hard. My heart just breaks for what she is going to have to endure. Tim said, and I agree, this will be harder on us than on her and she won’t remember it. But, MAN this is gonna be HARD! I think I’m still in shock a little bit. I just can’t believe this is happening. I’m very concerned about getting to all these doctors appointments and everything while still taking care of Caleb, getting him to school, not letting him feel pushed aside. It’s all just a lot to take in.
It’s hard to not wonder why. It’s hard to not wonder why God is doing this. We already have so much going on that is making life really challenging, why would He add another BIG thing? Why does He keep ripping my heart apart when it hasn’t had time to heal yet? When will we get a break?
I know in my head, He knows what He is doing. He is doing what is best. He never promised us an easy, uneventful, rosy life. There are so many people who have it so much worse than I do and I should NOT be complaining.
It’s just very exhausting.
But not impossible. (Right????)
And we DO have things to be thankful for. And THAT is what I need to choose to focus on. Because “Why me?” or “Poor me!” is just not productive or how God will be glorified. Or how I will grow. Or get me ready to take care of this precious little miracle girl we will meet in a few short months.