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| 3 days post-op |
It has been an interesting few days since I last posted. I finally feel a peace I was unable to feel after the first surgery. There was something telling me things weren't right. The baby we brought home was not the same baby that we brought to the hospital. I found myself wishing we were back at the hospital. When we got here, I still felt like something wasn't right. She was extremely fussy even as we started to get the reflux under control.
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| A rare moment of rest in between surgeries |
Pardon my language, but the shit hit the fan Tuesday afternoon. I took a break to pick Hope up from a playdate and spend the afternoon with her before we went back in for dinner. In the hour that I put my phone aside to play with my toddler, I received two calls and a text from our cardiologist. My phone was on silent left over from the echocardiogram Mireya had had that morning at the hospital, so I had no way of knowing he was trying to reach me. When he couldn't reach me, he called Chris. For this I am glad. Any time the hospital calls you, it is not good news and this was no exception. The results from the echo were bad. On Saturday, when we came in, they had done an echo and noticed an anomaly on her conduit. Our cardiologist had noted it before we were discharged, but wasn't significant enough at that time to do anything but make note of it. By Saturday it was noticeable enough to see there was a small aneurysm. Tuesday's echo was to recheck this aneurysm. It had doubled in size and was growing rapidly. The only way to fix it was surgery and it needed to be done sooner rather than later. They had never seen one burst, but the way this one was growing was somewhat alarming. Our surgeon was open the next day, so they decided to go ahead and fix it immediately. I will admit I have never been more scared than I was after we got the news that she would need a second surgery. While I have been well aware of the risks that come with open-heart surgery, I am also aware of the success rates that they boast here at Boston Children's. I've always felt confident that the girls would pull through and not become a statistic. But this time felt more urgent and more scary and I actually had to think about what it might feel like if we did lose her. It was really an awful feeling and I can't possibly imagine what it must feel like to lose a child.
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| Morning of surgery |
Tuesday night, I stayed the night with Mireya and she did not have an easy night. She was incredibly needy and would not allow me to put her down. They came for us first thing to take her down to the cath lab. Our surgeon wanted to have an accurate road map before going in for surgery. While she was in the cath lab, I ran home to see Hope and take a shower. Running home from the hospital is something I do frequently. It allows me to stay overnight and only take one car in. It also gives me time to clear my head. It saves time because it only takes me about an extra half hour to run home. I really needed the run on Wednesday. Aside from being tired, I felt really tense from the news we had gotten the day before. Running frees my mind and lifts the tension.
After I got home, we left Hope with Chris' brother and his girlfriend and headed back in to the hospital to spend some time with Mireya before they took her down to surgery. They left her sedated and intubated in between the cath and surgery. This was good so they didn't have to bring her in and out of anesthesia twice. We hung around and waited for surgery to come by with consents and then went down with her to surgery. Taking your child down to surgery and handing her off never gets easier, though this time I didn't actually cry. At this point it was 3:00 and we decided, given the fact that it was pouring, to try and beat the traffic and head home and wait for news there. Per tradition, especially given Hope was out on a field trip with her uncle, we went out for drinks, first to Not Your Average Joes then to one of our favorite restaurants, Tango. Not Your Average Joe's had $1 oysters so I had half a dozen and a pomegranate martini. Tango has a cozy bar with empenadas for Chris and a drink called the Buenos Aires martini, that I love. We had a gift card that our friends had sent us and it seemed like the perfect occasion to use it. As we drank the afternoon away, the updates came in. The surgery was moving along swiftly. We went home to catch up with Hope, Robbie and Tiana. Finally we got the call that it was over. Chris headed in to the hospital to meet with the surgeon.
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| In between the surgery and the cath and not looking so great |
The surgery was a success. A new 9mm femoral conduit made of goretex supported by an external stent had been placed, replacing the homograft conduit that had failed due to the high pressures in Mireya's heart. These high pressures are a result of her MAPCAs. There is a normal flow of blood coming in from the aorta on the left side of the heart. It goes through the VSD (the hole in her heart) and out through her narrow pulmonary arteries, building the pressure in her heart. They leave the VSD open so that the blood can shunt back over to the other side of the heart, rather than causing the pressure to go too high.
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| First photos post-op |
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| Day 1 post-op, 3 months old |
Now on to recovery. We are back to where we were two weeks ago, just one room over. We are in the room Hope spent 12 days in post-op. Her first day of recovery went great. She looked really good and they were ready to extubate. It was clear that the tube was making her angry. We waited around for them to pull the tube and they came close at one point, but then she fell back asleep. They needed her awake. We finally gave up because we wanted to grab dinner before going home to put Hope to bed. We found out that they extubated her just a few minutes after we left.
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| Having a rough day |
Yesterday was not as good as Thursday. Mireya is a little bit of a princess and felt the need to cause a ruckus both when they extubated her and then the next morning during a routine chest xray. She is a very calm, sweet baby when things are going her way, but when you piss her off, there is hell to pay. She does not care for chest xrays or diaper changes, especially if wipes are involved. She gets angry and when she gets angry, it is quite dramatic. She begins to shunt blood through the VSD. This is a problem because then the unoxygenated blood goes back across the VSD and out to the body causing her to desat and go cyanotic on us. She tends to recover well, but it can be quite scary She did that a couple times overnight from Thursday Friday and almost resulted in her being reintubated. Fortunately, the attending on duty was the same attending that was on duty when she was extubated and he had seen this dramatic reaction and more importantly, the recovery. So after that dramatic performance, yesterday was a rest day where not many changes were made other than to slowly wean her oxygen. When we got there yesterday she was on 8L of high flow nasal cannula at 100%. When we left, she was at 6L at 70%. When I called to check in before bed, she was at 6L at 40%. So while it was slow, there was definitely progress.
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| Heartbreakingly sad eyes |
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| Peaceful |
Today is a new day. She was resting comfortably in her throne when we got here. I noticed the high flow oxygen machine was turned off. I was about to go check to see where her oxygen was, when I noticed there was no longer a cannula in her nose - off oxygen and on room air! This is a big step towards the floor and then home. The plan for today was to get her to start eating, take out the chest tubes and intercardiac line (which will mean we can hold her again) and start weaning some of the painkillers. So far we pulled the line and the tube, and she is settling into Chris' arms to eat. They are talking about moving us to a more private room with walls. It looks like we will probably be in the CICU until Monday. Then depending upon how things go, I'd suspect we'll go home mid-late week.
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| The essence of Hope |
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| Love this kid |
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| Picking out a tree |
So all in all today was a good day. We are heading in the right direction. We thank you for all your thoughts and prayers, food, and offers to help. Currently, my parents are here to entertain Hope and help out. We have used some of this down time to spend time with Hope. We got a Christmas tree last night and my mom is going to get the lights on it today and start decorating it, so that we have some semblance of the holidays in our house. While I really didn't feel very Christmas-y at all, I am feeling better as the decorations go up and Mireya starts to make big progress. It will be nice to have all those decorations up when we do finally get home. It's been hard not to get discouraged and feel down the last few days, but its also so important to remember that it is a marathon and not a sprint.
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| First time holding her post-op 2 |
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