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| Earlier tonight at the hospital. |
Since we last chatted...
Caroline did great at home. Phil and I were starting to feel confident about checking to make sure her tube was in the right place. We had to learn how to do an air bolus---use a syringe filled with air that you push in her tube. At the same time you put a stethoscope on her stomach and listen for a woosh or pop sound. Yes we have a stethoscope! We had one night where the sound sounded different and we freaked out a bit but it was all okay. We worked on doing massive amounts of laundry and getting all the medical supplies organized and cute looking. We also bought Caroline an awesome mobile. Man she loves that thing!
We had a great weekend at home. Phil took Caroline and Zach to the park on Saturday and I had a much needed spa day. I had scheduled the spa day weeks ago but it ended up being really good timing. I needed that after 4 days at the hospital. On Father's Day Caroline and I took Philip out to lunch at Taco Bell (his favorite food place). Later on we went on a long walk at the park with Zach. It was great! Caroline and I gave Philip a framed picture of the two of them, a book with her handprints and room to put her handprints every year on Father's Day, a corney "World's Best Dad" mug, and two kids book about loving Daddy.
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| Happy Father's Day! yuuummm Taco Bell |
We met our home nurse who comes by 3 times a week. She is great! It has been reassuring to know that we have additional support.
New Developments
Our home nurse noticed on Monday that Caroline was pulling some in her chest to breathe. Look at the picture below to know what I mean. On Tuesday I still saw it so I decided to take her into the pediatrician. The pediatrician called the cardiologist to discuss what she was seeing with him. Basically the pulling in her chest was a sign that she is having difficulty breathing. We have increased her food in order to help her gain weight but the increase in food is too much for her little body to handle. Thus, she is laboring more to breathe. We don't want to back down on the amount of food she is given because she needs that food in order to thrive. Actually what we were officially admitted to the hospital last week under was "Failure to Thrive". The cardiologist had us up her medications to see if that helped. And we were told that this means that it is time for surgery. Like the cardiologist has been saying all along, Caroline will let us know when she is ready.
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| Normal breathing when we first got home last week. |
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| This week. You can see the definition between her ribs and belly. That is the pulling/labored breathing. |
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| You can see it here too. Also, look how much she loves her mobile! |
Today despite the increase in medications Caroline was still laboring to breathe. I took her back into the pediatrician who said that Caroline was slightly worse than yesterday. She wanted us to go home and pack and she would talk to the cardiologist and the hospital and get us admitted. While I was packing she called to say that we needed to go see the cardiologist. They didn't know whether they wanted to admit us directly to UVA's hospital in Charlottesville (about an hour from our house) where she will be getting the surgery or the local hospital. I was now told to pack like we were going for surgery which will be 5-10 days. I just started throwing stuff into bags and into the car. I was scared. Going to UVA already meant things were bad or that surgery was going to be in the next day or two. Once we got to the cardiologist we were seen by one of the doctors in the practice (our doctor was at UVA for his weekly meeting with the surgery team). She was pleased with Caroline's numbers and even considered not admitting us to the hospital. Phil and I expressed our desire to readmit her because we are nervous and don't want to miss something. She then did an ultrasound of Caroline's heart. She noticed that most of her blood flow is going through the right side and not the left side of the heart. That means blood is mainly going to her lungs and not as much out of her heart an into her body. She thinks this will be fine after surgery but it is just another thing to add to the mix. She agreed to admit her to St. Mary's Hospital in Richmond. Caroline is admitted under the labels "Failure to Thrive" and "Congestive Heart Failure". Basically we have upped her medications as much as possible and she is getting fed by a tube. There really isn't much more they can do other than surgery. Our cardiologist should be by tomorrow and let us know the plan for surgery. We think we may be getting medically transported to UVA tomorrow, we are not sure. Long story short, Caroline needs her heart surgery. It is sooner than we originally thought and she hasn't gained as much weight as we would like but as Phil's cousin reminded me tonight, this is all God's plan not ours. What is that quote? "If you want to make God laugh, tell him about your plans." It is okay that it is June and not August or September. This is just when she was meant to have surgery (easier said than done but a friend suggested that idea and I have tried to run with it). I also try to remember what our cardiologist said, "This isn't her forever heart. What we are dealing with now is temporary." The surgery is a good thing because it will fix what is wrong and make things easier for her. Yes we would like to wait longer but if she needs it now then that is just what needs to happen. Basically I'm trying to look at the surgery as a positive thing. I'm still scared shitless about it and what her prognosis will actually be afterward because I know it depends on how well it goes. But hey, gotta find something positive about your child having open heart surgery right?
I answered questions about the surgery back at this post.
I answered questions about the surgery back at this post.
Phil and I are hardly holding it together. We keep holding her and snuggling her. We can't believe surgery is upon us. We are both scared. Actually yesterday when they told me she would be having surgery in the next week or two I started crying and saying "I can't loose another baby, I just can't loose her." I pulled myself together and was fine until getting to the hospital today. Last week I was all calm and comfortable at the hospital. I really wasn't scared. Now I'm terrified. I went for a walk earlier so I wouldn't just sit in the room and cry. I don't think Phil nor I know how we will be able stay somewhat composed while she is in surgery for hours. Our fears of loss are hard to handle. We just love Caroline so much.
I think the hardest thing to come to terms with is why/how this could be happening to such a wonderful, small, innocent little child. I look at Caroline and can't believe that something is wrong with her heart. I look at her chest and I am sad that one day soon there will be a scar there. I look at her feet and still see little red dots on her heels from all the blood they took at the hospital last week and I can't imagine her with tubes everywhere but I know they are coming. It doesn't seem fair that she is and will have to go through so much. I don't know how to deal with these feelings of unfairness and sadness that your child has to go through this. I try to remind myself that we are so lucky to have her and that we have amazing doctors and technology. If we didn't have the technology that we have today then Caroline would not be okay and my fear of two urns would be a certainty. Now with technology that is no longer a certainty. This past year has taught me to be realistic and I know it is a possibility but I try to focus on the positive. It is scary to have the fear of loosing her in the back of my mind always... there is nothing I can do though. One of my friends said to me when I was pregnant and freaking out one day..."It is okay. It is in God's hands." I find myself repeating that to myself when I get overwhelmed with fear. It is in his hands and I have to have faith in him no matter how hard that may be (and it ain't easy) because if I don't have faith that it will be okay how do I go through each day?
I don't know when I will feel like writing again or when I will have the chance to write again. Right now we are just taking each moment as it comes.
Please join us in praying for the doctors and nurses taking care of Caroline. Please pray for Philip and I to have strength as we go through this. And pray for our beautiful daughter Caroline to make it through this impending surgery with no complications. Right now we are living off your prayers. Thank you :)
Love,
Megan
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| 9 weeks |
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