I opened my blog to write a new update and had an update I had started previously about having Reagan home and how wonderful it was to watch her play and laugh and walk around. Unfortunately, that’s not the blog I’m posting.
On Tuesday evening around 6:40 p.m. we had finished feeding Reagan and were playing…my mom was over and had just given Reagan some more clothes…she’s pretty fashionable if you haven’t noticed. Reagan had just taken a couple steps to me by holding on to my finger and she rushed in to give me a hug. I love it when she does that! All of a sudden she was on her belly, I figured she was going to crawl. Her left arm was stuck under her and she was grunting…maybe she was pooping? We kept saying, “Reagan, what are you doing? Are you going to get up?” Rob said, “Anne- Marie, help her.” When I picked her up, she was completely limp. My heart sank, and so did Rob’s…I saw it in his eyes.
Oh, my goodness I thought, is this a metabolic crisis? Have we lost her forever? She was staring into space. I called 911.
The paramedics arrived and our neighbors were there asking if they could help. I gathered a few items like her formula and Rob rode with Reagan in the ambulance, my neighbor drove me, and my mom drove behind the ambulance. Rob said she was dazed, looking out a million miles away and she did cry for most of the way, but when I saw her and heard her, it wasn’t her normal cry. She looked debilitated. Rob and I looked at her and each other with tears in our eyes, biting our lips and shaking our heads in disbelief and confusion. All we could say to each other was “I don’t know…”
I kept looking at her saying, “Where are you baby girl? What are you looking at?”
Reagan had a CT scan and all her blood levels were checked for her GA-1. Both were normal. We were moved to the neurology floor.
Even though so much was happening, I did have the presence of mind to make our room request known…”Can we please have the biggest room you have? We just got home on Sunday after being here eight days…and a large room helped our sanity.”
As soon as she was moved onto the Neurology floor, she had a seizure. A real, minute long, scary looking seizure. It’s what the ER doctors suspected she had, but her episode at home was nothing like this. Rob and I wept as we held her with the nurses. I remember the nurses from our previous visit telling us that they like to see fighters. And that’s how they categorized Reagan. But this go around Reagan was not her feisty self, she cried at her IV being put in, she cried during a few things, but I just don’t know where her usual feistiness was hiding. And we are scared. I want her to rip things apart, I want her to be difficult and strong willed like she is.
Last night, she was hooked up with an EEG to monitor all her brain activity, and I had a button to push every time I thought she was having an episode. I asked the tech how many times it was pressed and she said around 50 times btw 1 a.m. – 5 a.m. She had lots of mini tremors and four big, one minute long seizures. The good news is the Neurologist came in this morning and said those mini episodes were not seizures.
During the EEG test a bunch of flashing lights at varying speeds and intensity were put in front of her, the purpose was to induce a seizure if there were any “seizure remnants” in her body, and it did. She had another big seizure as a result of the flashing lights and then for probably the next several hours she had tremors. Not as intense, only 10-20 seconds, her body didn’t always shake, sometimes it did a little, sometimes it just stiffened. And there was a period of about an hour and half where she slept and didn’t have anything. At one point she woke up and said things like Bauer, Dad and just made babble sounds. She kicked her legs a couple times at one point and gave us a smile…we would see glimpses of our Reagan. It took several doses of different drugs to actually make her seizures stop, and that has allowed me to write this update.
I honestly don’t know how Rob and I can take much more. She had RSV, a virus that’s really tough on babies, and b/c of her metabolic condition, we had to stay in the hospital for eight days to get her to a place her Nemours Dr.’s were comfortable with her eating. Since being home, she has not wanted her formula, she has developed a bottle aversion we believe, so on Tuesday morning, we went to an occupational therapist to assist and give us ideas on how to get her to drink her formula. It was a major concern for Rob and I but her Nemours team said we had a little flexibility, maybe two weeks ,for her to figure out not to associate her formula with the hospital and vomiting since she was eating really well. But now…with this seizure episode, I just don’t know how we will overcome two major obstacles…eating and her GA-1 and these seizures, which we still don’t know where they are coming from, why or a diagnosis. And the formula, she’ll likely have administered through a tube again…I hate saying my baby is on a feeding tube. It seems lifeless. And she’s not a lifeless kid.
Last night they moved Reagan from Neurology to the intermediate section of the PICU floor…I remember coming back up the elevator at some point last night and thinking to myself, “at least we’re not on the PICU floor” and here we are, on the PICU floor.
I don’t think we’ll know anything until Reagan starts to wake up more…the medications make her groggy and seizures really take it out of babies. She didn’t get much rest last night b/c of all the episodes and now she’s surely groggy and trying to rest as she’s not having any episodes right now.
What we are praying is for our baby girl to come back to us. I don’t know how severe all this affected her, it just feels like we have this huge mountain to climb. We climbed a big mountain for four years to start a family, and then found another mountain range with her GA-1 diagnosis…we just keep climbing and climbing and the weight just gets piled on top of our backs.
Jesus says, in Matthew 11:28-30 “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
Truth be told, I hate that God has chosen us to go down this path. Our friends say “oh, you have such strong faith, it’s so encouraging.” I don’t think so…I’m mad, I’m upset, I want to yell at God…I feel like He’s far away, I feel like He’s being mean to us. But when you don’t think God is there, that’s when He’s right next to you, right behind your shoulder, giving you the extra strength to take a deep breath or standing in front of you catching your tears. I just wish I didn’t have to shed so many tears…I’m tired of crying and it feels like we don’t have much energy left to go down this path.
I will say though, that our friends and family have greatly helped us. My mom, our neighbors Tom and Debbie, and our friends Rachel and Laura came to the hospital without thinking twice, without me even asking. They just sat in the ER waiting room, hoping I’d come out with an update. This morning, Trey brought us breakfast and coffee. And I know there is an army praying for our warrior girl.
Not really sure what to pray for but off the top of my head, I’m praying that Reagan will be her normal self. I pray that this can be managed, that these seizures did not have damaging affects on her brain, that she will run and walk and play and have friends and of course, be back with her furry partner in fun, Bauer.