Berklee has been in and out of the hospital 6 times from August 13th to September 15th. In that time span, we spent 23 nights in a PICU. I lost count of how many times Berklee had been poked but I honestly wouldn't be shocked if it was triple digits now. It seems like everyday was at least 5 times :( Somehow she really was a strong little girl. I never thought I could go through the things I went through until I looked at her. If she was being strong through, I better be!
So here's how the hospital stays went:
August 13-16: Cabell Huntington PICU - Start Propranolol 4 times a day every 6 hours :/
August 18-19: Cabell Huntington PICU - Continue same medications, medication didn't have enough time to take full affect
August 21: Trip to ER at Cabell Huntington
August 25-30: Cabell Huntington PICU - Start Digoxin with Propranolol (Made things worse!) Discontinue Digoxin & ween off Propranolol, start taking Flecainide exclusively
September 4-5: Cabell Huntington PICU - Continue with Flecainide, add Propranolol back
September 5-15: Transport to WVU Children's at Ruby: Discontinue Flecainide and Propranolol. Start Amiodarone.
It's so easy to just type that out like it was nothing, but that was the worst, lowest points in my life. My sister gave me a journal called the "Berk Book" to keep all my thoughts in while going through this. It was a great thing! It got my emotions out and it's something that we can all look back on to see how far we've came and what we conquered. I've continued writing in it every other day for the hopes that one day Berklee will want to read what I thought of mommyhood and of her. Knowing how I feel about Berklee, I couldn't imagine her treating me the way I sometimes treated my mom. It would crush me if Berklee back talked the way I did. I just pray daily that Berklee knows and understands how much I truly love her. I think it will take her having a child of her own to fully realize it, at least I know thats what it took for me.
The medication Berklee is on now seems to be working. She is currently on day 15 of being SVT free and it's the longest stent she's gone with no SVT!! We're so happy!!! The medication, however, is the toughest drug out there and has some pretty nasty side effects. She has to get labs, aka get blood taken from a foot or hand and a lot of it, every 6 months. It can effect her thyroid, lungs, kidneys, liver, and skin. We have to put sunblock on her anytime we go out because if she gets too much sun they say her skin will turn a blue color. Talk about scary! John and I still live a bit on pins and needles but we're getting through.
The last little tidbit to catch up on is what happened the evening we got home from Morgantown, our last hospital stent. My mom, myself, and Berklee got home around 5 from Morgantown. At 7:30, after Berklee's bath and while reading a Bible story, Berklee went into SVT. I completely broke down. I couldn't do it again. I couldn't go to the hospital one more time and especially not 2 1/2 hours after just getting back from one. John told me that this was not a time to faint. Berklee needed me and I had to be strong. I wanted to be so bad but just couldn't stop the tears. He told me to go get a quick shower in case we had to go to the hospital and to pray hard while in there. I prayed the hardest I could between the sobs. It wasn't 5 minutes later John comes in the shower and tells me Berklee was out of SVT. I lost it again, in the shower, just sobbing. I gave Berklee a quick, wet kiss and hurried up so I could talk with John and Berklee. What John told me was nothing short of God's miracle! He said that as soon as I went into the shower, he began to pray. He said he had be praying all along to heal Berklee, but this time he prayed of surrender. He said he told God, "You gave Berklee to us, you can take her away. I'm completely surrendering Berklee to you, take you if you want her. If it be your will, let us keep her. But whatever it be, plus let your will be done." He said as soon as he opened his eyes from prayer, Berklee was opening her eyes too from SVT! We were both just speechless and knew it was only God that did this. We immediately pledged to reading our Bible's more and promising God to raising Berklee in the best Christian home we could. We started in Proverbs that night and for no reason at all. When we got to Proverbs 3:23-25, we were struck again. It was God showing us that he was with us through what he did with Berklee and then his word was backing it up. I was telling John how I wouldn't sleep at all that night because I'd be scared Berklee would go into SVT again and this is what the scripture said ... "Then you will walk in your way securely And your foot will not stumble. When you lie down, you will not be afraid ; When you lie down, your sleep will be sweet. Do not be afraid of sudden fear Nor of the onslaught of the wicked when it comes." Now, as we were reading, Berklee was just staring without blinking at the ceiling. There was no ceiling fan or fancy stuff up there, just a plain white ceiling. She stared FOREVER and it wasn't just a stare but like she saw something. We saw nothing, but it wouldn't surprise me that she saw her angel watching over her. Her face was just so calm and content. God taught me a lot that night. It was such a life changing event for us. Since that night of complete surrender, God has kept SVT away from Berklee and us.
Anyway- I will try my best to do better with this blog. I have tons of pictures of Miss Berklee but I will leave you with one from her 2 month pictures :)
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