Saturday, November 29, 2014

Our Adoption Story: Part 6

Francie was readmitted to the hospital on Tuesday in preparation for her surgery on Wednesday. As soon as we got to her room, people started coming in to prepare Francie for surgery the next day. Her nurse told us that Francie wouldn't eat again before her surgery, and that made for a long day. It was sad seeing her hungry and wanting a bottle but not getting one. She was also going to be given something to "clean her out" before surgery. So the poor girl was EMPTY and she wasn't pleased. A team came in to look at Francie's veins for her PICC line that would be placed the next day. David and I spent the day at the hospital with Francie and signed about a million consent forms on Tuesday, and that evening we went back to the Children's House to try to get some sleep. We knew we were in for a long day on Wednesday.

David and I got up at 5:15 on Wednesday morning and went over to the hospital. I was feeling really emotional and jittery that morning. When we got to Francie's room, it was still dark and she was wrapped up sleeping in her bed. She looked so peaceful, and it made me SO sad to think about what was to come. She wasn't connected to any wires at that point, so David and I were able to pick her up and hold her for a few minutes. I was crying as we prayed over her. Pretty soon, someone came to take us to the OR waiting room. I sat in a wheelchair and held Francie and David walked with us. It felt similar to leaving the hospital with a new baby. Except this tiny baby wasn't leaving the hospital. She was about to have major surgery. It was surreal. When we finally got to the OR waiting room (it felt like it took forever), they put us in a little curtained off room. There were more consent forms to be signed and people coming in to talk to us about what was going to happen when suddenly someone mentioned Francie's PDA in her heart and everything came to a full stop. I need to back up a little bit right here.

After Francie was born, they tested her heart to look for possible heart defects. Children with Down syndrome have a pretty high chance of having heart abnormalities, so we were very relieved and happy to hear that Francie's heart was structurally good. This was a huge answer to prayer. They did tell us that Francie had a moderate to large PDA in her heart. They told us that this is common in newborns and that it would most likely close on its own. When they told us it wasn't cause for concern, we kind of put it out of our minds. All of this happened at the first hospital where Francie was born, and after she was transferred to Hopkins several people asked us if Francie's heart was ok. When asked, we would mention the PDA, but again, no one seemed concerned.

So, back to surgery day.... apparently the doctors at Hopkins had just gotten the results from the other hospital, and they were concerned about the size of her PDA and going under anesthesia. Different doctors kept coming in to talk to David and me about the benefit of going ahead with the surgery vs. the risk of putting Francie under anesthesia for so long and putting stress on her heart. (They had told us that the surgery would take about 10 hours, Yes, you read that right. TEN HOURS.) They said they were going to need to do a sonogram to see if the PDA had closed or at least gotten smaller. They said if it hadn't, they weren't comfortable going forward with the surgery.

That was a blow. Of course David and I were thankful that they were being cautious. We absolutely did not want to put Francie's heart at risk by going forward with the surgery. But we were literally sitting there waiting for them to take her to the OR. They had done the surgery prep. We were as mentally prepared as we were going to get. We were THERE. And suddenly it just felt like the rug had been pulled out from under us. I was a little bit frustrated that this wasn't discovered sooner, to be honest. But it wasn't, so there was nothing to be done at that point but wait and see. I'll be honest, I did NOT think that the PDA would be closed. I even told David that there was no way the surgery was happening that day. One of the doctors even said that sometimes "people with Francie's genetic makeup (meaning Down syndrome) are a little slower to do things"... like close PDA's. I prayed that it would be closed, but I'm ashamed to say that I didn't have much faith.

They took us into the actual operating room for the sonogram. David and I got to stand there and hold Francie's hands and watch the whole thing. Of course we had no clue what we were seeing, and the person doing the sonogram just told us that a doctor would have to read the results. So, after it was over, we waited. There were a couple of doctors and nurses in and out and we made small talk for a bit. But I was so nervous and tense the whole time. Finally, one of the doctors got a text and she said, "It's closed. We're on." I think I probably looked really shocked and I said, "You mean she's having surgery?!" She said yes, and I just remember thanking the Lord and being so blown away. I know that the Lord closed that PDA. At that point, David and I had to quickly leave the OR. We kissed Francie goodbye, and walked out. The goodbye was actually a lot less sad than it could have been because we were just so thankful that the surgery was actually HAPPENING at that point.

David and I then had the whole day ahead of us, and it was hard to figure out what to do with ourselves. They had our phone numbers, so they told us there was no need to stay in the waiting room or even the hospital. They advised us to go back to the Children's House and try to get some rest. I thought we probably would, but we ended up never leaving the hospital. We went to the cafeteria for a long time and called/texted family and friends and then we walked around the hospital and went back to the cafeteria, and on and on the day went. Every once in a while, someone would call to tell us that the surgery was going well.

Finally late that afternoon, they called to tell us that the surgery was over and the doctors wanted to talk to us in the waiting room. We hurried up and got to talk to Francie's surgeons. They told us that the surgery had gone really well and that Francie would need to be in the hospital recovering for about 4 weeks. I don't think I've mentioned yet that Francie had to be in traction after her surgery for the whole 4 weeks. Part of her surgery included closing her pelvis, so they had to keep her totally still so that it could heal properly. That meant that we couldn't hold her that entire time. Four weeks is a LONG time, but we were expecting her to be in traction for 6 weeks, so we were actually really pleasantly surprised and excited when the doctor said 4. After we finished talking to the doctors and they left, David and I stayed in the waiting room waiting for them to let us know that Francie was in a room and we could see her. We waited. And waited. And waited some more. It was literally about two hours before they told us she was in a room. Apparently when they said they were "finishing up" they just meant that the surgeons' work was done. They later told us that they still had to close everything up and bring her out from anesthesia.

David and I finally got to go to the PICU and see our sweet baby, She was lying on a full size hospital bed with her little legs tied up completely vertically. It was really bizarre to see her like that, but I was just SO relieved to see her! She was still asleep and the nurse said that she would be for a long time. They have to keep these kids pretty sedated so that they don't move around too much. Thankfully, Johns Hopkins does a GREAT job with pain management post surgery. This surgery that Francie had is an EXTREMELY painful recovery, so one reason why we wanted to go to Hopkins was because of their great pain management. Fun fact: Francie actually had an epidural! That blew my mind. It was great because it kept her fairly still but after she got past the most painful days, she was able to be awake and still comfortable instead of just being completely sedated the whole time.

Anyway, David and I visited with Francie for a while that night, and then we went back to the Children's House to get some sleep. By the time we left, we had been at the hospital for about 14 hours. We were exhausted, but we went to bed oh so thankful that night.


Ashley @ Our Happily Ever Afters said...

I am so honored to be your friend as I read Francie's story. I can't wait to hold her and tell her how much she is loved!!

Anonymous said...

I check your blog way to often waiting for the next installment of francie's story!!

Megan Garrott said...

Carrie, I have been reading your blog for a while through Sarah Denley's blog. I went to college with SD (and you too I suppose ;)). I have loved reading Francie's very special story and have been praying for your family! Hoping y'all have such a fun and special Christmas season this year with your new addition!