It’s been way too long since I’ve blogged and I’ve missed it. I think I can easily blame fb for my lack of effort and I’m going to regret not having this “journal” to look back at some day. So, here’s to updating a little bit more.
It’s been a crazy year filled with more doctor appointments than I can count… appointments with 7 different specialists just for one kiddo plus all of the other routine stuff. As you all pretty much know, Ryan, Cora, and I traveled to Boston with hopes that a bi-ventricular repair would be successful. After a cardiac catheterization, Dr. Marx and Dr. Emani were confident that she was an excellent candidate for such repair. So, on Sept. 2 we handed her over to someone we had only met once and prayed that God would hold her and give her back to us. We waited at the end of this LONG hallway for our hourly updates. We have done this surgery wait game too many times before but we always had friends and family to help pass the time. This was extremely different.
After 8 long hours, we met with Dr. Emani and Dr. Marx who reassured us that the repair was successful and then we waited to see our beautiful girl.
She was in the ICU for 6 nights with many ups and downs. Our scariest day was when they pulled her PA line. We knew that her blood was thinner than they like to see for this step but it was the one thing holding her back from progressing. So, they had blood products in the corner of her room “just in case”.
I remember assuming that they were being cautious and didn’t think we would actually need them. The Dr. pulled the line, tied the stitch, cleaned up his tools, and then started to walk out of the room. I looked at my beautiful girl and watched her face and hands go sheet white. Her lips were gray and all color was gone from her face… in a split second. The nurse looked at the monitor and told the dr. he wasn’t going anywhere. She was indeed bleeding from her PA. Within seconds, her room was filled with doctors, nurses, RT’s., and our prayers. We sat back on our bench as we watched them working on her. That cooler was opened and the contents saved her life. We sat there and fearfully prayed. After several scary minutes, she was stabilized and then the next few hours were spent getting her blood volumes back where they needed to be. We were blessed with the most amazing nurse that day and we are so incredibly thankful for her.
That evening, they let her rest and then in the middle of the night, they decided it was time to get her off of the ventilator. Let me just say that it couldn’t have been worse timing as far as we were concerned. We were emotionally and physically spent from the events of the day and if we had known that it wasn’t going to be smooth sailing, we probably would have asked for them to wait. But, we didn’t know and they didn’t ask. So, 3 days post op, she was extubated. She wasn’t quite ready to fly solo so she quickly ended up on the bi-pap machine which she hated.
That awful mask was basically clamped to her head so she couldn’t yank it off and we spent the next 24 hours in a battle of getting her strong enough and ready to be off of it. I watched my sweet girl go from fighting it to surrendering to it. That surrender was the worst part. I prayed for her fight to come back because I knew we were stuck until it did.
We had an amazing nurse who did chest PT and suction on the hour which Cora hated but it kept that awful mask off so we soldiered through.
After 6 nights in the ICU, this girl made her way to the step down unit and we continued to see little glimpses of our sweet Cora return each day. We were able to go on walks around the hospital and even out in the garden. She loved getting out of her room and we knew that her discharge was coming soon.
My favorite and most frustrating thing about my girl? Her stubborn, independent self. There was absolute no bribing this girl to do something she didn’t want to do. We were able to bribe Maggie along in her recovery to help her get stronger, but not Cora. If she didn’t want to eat, walk, go to the bathroom, or even show the dr. her incision, she wasn’t going to. Period. However, it’s this fierce determination that has brought her to where she is now and this determination is pretty darn adorable too.
So, after 10 days in Boston Children’s, we said goodbye to the two men who had given our girl a whole new chance at life. God used these two to give her a quality of life that we never thought possible. We are forever indebted to Dr. Marx and Dr. Emani and they will always hold a very special place in the hearts of our family.
As Dr. Marx walked out of Cora’s room, we just kept saying thank you and he just kept giggling with that contagious smile. He turned and look at us and said, “if only you could know… if you just knew.” This is a man who truly cares for each of his patients and he was overjoyed to see such an amazing outcome.
Then, there’s this man. He looked too young to know what he was talking about but he’s a genius. He reworked her wonky heart to an even better wonky heart. Seriously, her heart is still wonky but it’s a good wonky. He’s quiet and humble and so precious to us.
So, we left that place… “Cora’s hospital” with hearts over flowing in gratitude. Somehow, she still has fond memories of it and even asks to go back. I don’t know how that’s possible after all that she endured but I think somehow she knows. She knows that’s where she started feeling better… feeling as a child should feel.
We kept her discharge a total surprise. It killed me to not shout it from the rooftops but we didn’t want anyone spoiling the surprise for our kids. After arranging the surprise with my parents and the kids’ teachers, we stayed the night near the Boston airport and flew home bright and early in the morning. We surprised the kiddos at school and that was THE BEST. They had no idea we had even left the hospital yet. So, seeing their faces was indescribable. We walked out of Crosspoint with ALL 5 kids better than ever and so incredibly thankful to the Giver of all Good Gifts.
Since then, Cora had some struggles with her heart and lungs catching up to the huge changes. She had pretty significant pleural effusions for the first 3-4 weeks after coming home. As of December, she is off all medications except one aspirin a day and doesn’t see cardiology for a whole year. She is happier than ever and thriving.