Sunday, March 9, 2014

Oh by the way, she has heart disease

Before I start I need to say that this is the first time I am going to relive this whole thing and it's been a year. This is going to be pretty heavy so if you want to keep things light, I suggest skipping this post. I'm going to try to make most of this about facts because if I don't, I may end up having an emotional break down. At the time all of this happened, I was extremely scared but I try not to think about it because I know it's over now and I want to enjoy as much happiness as I can with my daughter. I appreciate every moment I have with her and I think that is the one good thing that came from all that happened to her.

Trip to the ER:
I left off where we got to leave the hospital, we got home and everything seemed to be going well. She still wasn't eating great but she was eating. The next day we brought her to her pediatrician for a check up, he said everything was good and she looked healthy. That night is when things started to change, she stopped eating. It took me about 45 minutes to get about 10mls of breast milk into her. I figured she would be very hungry her next feed but the same thing happened again. She was also crying every hour or so but it wasn't for too long. I decided to call her pediatrician but it was already 11pm so I got connected to a nurse line. I explained what was going on and she asked me several questions. After talking to her she said to call my pediatrician in the morning. Olivia refused to eat ALL night, I was up trying to figure out what I should do, I let her sleep and then in the morning tried again, she refused. She was pretty much out of it and just wanted to sleep. The nurse came around 10am (the nurse the NICU told me they would have visit) and I told her everything that was going on, she looked concerned but stayed calm and called my pediatrician. She told him what was going on and I heard her say "okay, that's what I thought, thanks" then she looked at me and said "go get a bag ready because I need to call an ambulance" she was pretty calm so I wasn't really sure what was going on, I got everything for Olivia and myself. On the way to the hospital she got oxygen and I called my husband to meet us. When we got there, they started putting IV's and oxygen and all sorts of other stuff on her, I had no idea what was going on. There were a ton of people around me and they just told me they were trying to figure out what was wrong, ranging from not serious to life threatening. At that point I didn't know if it was anything serious, I was hopeful that she would be okay and felt relieved that we were at the hospital and she was getting taken care of. One of the doctors told me they were going to do an ultrasound of her heart "just in case" but they didn't think anything was wrong because they didn't hear a murmur. I honestly did not think she had heart disease.

 Left: I snapped this picture right before the nurse came over.
Right: I really debated taking this picture but I think it's important to explain to her what she went through when she is older, she is a strong girl & I am so proud.

Heart disease and surgery:
I was trying to overhear what they were saying while doing the ultrasound and I heard "heart disease" but I thought "okay maybe they said that they don't see any signs of heart disease, just because they said heart disease doesn't mean she definitely has it". The doctor came over and told me that her heart was enlarged and the cardiologist would come explain to me what was going on. I was in shock. It didn't really sink in until the cardiologist said "heart surgery" then my heart dropped, my throat became dry and everything around me was blurry. I could hear him continue to talk but I was in my own head. I went numb, I guess that's the best way to describe it. I've heard that your body goes into survival mode and you block everything out to deal with the pain. If you've ever seen the movie 50/50, when he finds out he has cancer - that's exactly how I felt hearing my daughter needed heart surgery. My first question was, is she going to die? I know that sounds morbid but I wanted to hear that she would be okay, they told me it was very likely that she would be just fine. They said CHD was more common than we think and that 1 in 100 babies are born with a heart defect. They also told me a little boy was there a few weeks ago with the same problem and he was doing great now. That softened the blow a little bit but still.. it was MY baby this time and how could I know what the outcome was going to be?! Nobody can say 100%, not even the doctors. Olivia had coarcation of the aorta, which is the narrowing of a valve, she also has a medium sized ASD & VSD (two holes in her heart). They decided to only do surgery on the coarcation because the holes can close over time. The heart surgeon came in to speak to me and he was very nice, he put my mind at ease a bit but still, signing a paper that says surgery can leave your child paralyzed is extremely scary. I had no choice. Having heart disease can be because of other underlying issues, although not always but they tested her for lots of things, one of the big things was turner syndrome. Luckily all her blood work came back normal but while I was waiting for it, I convinced myself she had turner syndrome (too much time on the internet during that hospital stay). The nurses told me to stop looking online and if I had questions, the doctors were the best people to ask. I tried to stay offline but it was harder than I thought. Before Olivia could go into surgery, she had to be stable. She was very dehydrated (I had no idea how quickly a baby could become dehydrated) and her body had basically shut down, her kidneys took a day or so to start working again. At eleven days old she was finally stable enough to go into surgery. I kissed her a bunch of times and I cannot explain or describe the feeling I had when they wheeled her away. I wondered if that would be the last time I would see my baby alive. Eleven days was not enough, I needed her to be okay. Waiting in the waiting room was pure torture, hours went by without anyone updating us on how she was doing. Finally I couldn't take it anymore, after about five hours I asked and I was told they were just about done. When the doctor came in I was shaking because I was so nervous, he said "she's doing good, I'm very happy with the way the surgery went". We (me & my family) all started crying (tears of happiness of course) and hugging. We thanked the doctor and went to see Olivia. She didn't have open heart surgery (she had thoracotomy heart surgery), the incision is on her left side below the armpit (the scar is very thin and looks so great today, I'm pretty impressed with the surgeon). They said that the open heart surgery wound is less painful than the one she got; which sucks.. I felt horrible for her. She had a breathing tube, feeding tube and several IV's. Nobody wants to see their child suffer, especially not when they are so tiny. Her recovery was a few weeks long, it was so up and down. One day she was great, they next day something bad would happen. While we were there, her lung collapsed twice, her chest tube was taken out too early so her oxygen started going down, they needed to put a new chest tube in and she was still refusing to eat. Which brings me to the next part of all this.. the feeding tube.

In recovery - my little heart warrior.

Love/hate relationship with a feeding tube:
Olivia did not want to drink more than 7-10mls of formula at a time, despite many efforts on my part and a feeding therapist, it just wasn't happening. When they first told me she was being discharged WITH the feeding tube, it really scared me. I had to learn how to put it in, "what?! I'm not a nurse, I have no idea what I'm doing!!" they assured me it was easy enough and I practiced on a doll. She had an NG tube which basically goes in her nose and down her throat into her stomach. Not a pleasant feeling for her and putting it in was a struggle as well. Much easier to do on a doll that's not moving and crying. She had the feeding tube for about five months and the older she got, the more she would pull it out. It was my enemy but I knew it was helping her grow and get the nutrition she needed so there was nothing I could do about it. With not much progress on oral eating (despite many therapy sessions), the doctors started suggesting a more long term option, a G tube (tube that goes directly into her stomach). I went back and forth with the idea for months. My main concern was, if she got the G tube, she would have it for years. I did so much research on tubes and found a great website that connects moms with other moms who have children that are tube fed. That was the best thing that could have happened (my crazy obsessive searching finally paid off!) There was one mom who really helped me, I talked to her almost everyday and she gave me tips on weaning Olivia off of the tube (which I discussed with our doctor) and she really just helped calm me down on certain days when I would have melt downs. My family also helped of course but it's hard to understand when you aren't in the situation directly. Before I found this site I tried taking out the tube several times and letting her get hungry but it made no difference. We had a surgery date scheduled for a G tube. We ended up cancelling the surgery the day before because I was able to wean her off the tube and she was gaining weight.. very slowly but gaining. I did this by slowly decreasing what was going in the tube and letting her make it up orally. This was in no way an easy task. It took months and she lost weight (she was always on the 5% curve for weight and by the end of weaning her off the tube she was around 1%). Just a quick side note, if you are having the same problem with your child and they are tube fed, ALWAYS talk to your doctor before attempting a wean. I had a very specific plan with her pediatrician, GI doctor and feeding therapist. We also had a stop point, if she lost a certain amount of weight in a certain time frame, the weaning would stop. I tried once before the successful wean and she ended up getting sick so that wean had to stop. It was also helpful to start purees and rice cereal because she loved eating, just not drinking. We started purees at about 5 1/2 months and that was a huge turning point and the whole reason why I decided it was time to try weaning.

 The picture on the left is her screaming, which she did often. I decided I was either gonna go crazy or laugh, I chose the latter. I look terrible but that's what spending three weeks living at the hospital does to you.

Here we are now:
Olivia is now 13 months old and doing well. She is by NO means a "good eater" but she has definitely come a very long way. She drinks around 1-4oz every three hours (yes they still want her on that newborn schedule ugh) except I don't have to wake her up during the night anymore (yay sleep!) She still enjoys eating foods although she likes table food a lot more than purees and yogurt now. Unfortunately she was teething last week (three teeth coming it at once and one is a molar) so her eating suffered and she lost a few oz. but the doctor isn't concerned and she is back on her 5% weight curve. She is still tiny and we have bad and good eating days but she is happy and meeting her milestones! As far as her heart goes, she will always need to have yearly check ups for it. It was more frequent at first but now the visits are more spread out. The ASD & VSD are closing, one of them is no longer even an issue. The other (I can't remember which) most likely wont be an issue, as long as she has no problems. The cardiologist is confident that she wont need anymore surgeries.

Left: Half the food gets spit out or thrown on the floor but it's okay. ;) 
Right: Olivia with her heart warrior blanket. It has her name and says heart warrior - it also says "a mended heart is a special heart".

Okay, exhale! That was really long! I hope I can help anyone going through the same thing or even something similar. I know while it was happening to her, talking to other moms or just reading about others who went through it and now their child is fine really put my mind at ease, if only for a moment.

*I joined this great website for children with heart defects and I shared Olivia's story, here is the link if you want to check it out, join or share your heart warriors story!  Little Hearts - Olivia

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