I need to get this off my chest. I’m sitting on pins and needles and probably will be for quite a while until I see no signs of illness in my little girl.

This is what has been happening with Hailey lately:

Her feedings had been off and on. Sometimes she would take a full bottle, sometimes a half bottle, other times completely refusing bottles. She may or may not have been showing signs of dehydration but at this point, we think she probably was.

Tuesday morning, she woke up around 4:00 am. I went into her room and fed her a full bottle. We sat, like we usually do, to give her time to digest. About 5-10 minutes after burping her, she suddenly curled into me and stiffened. Her eyes were wide open and she was convulsing. I immediately screamed for Eric and just kept trying to get Hailey to respond to me. She wouldn’t. She was staring blankly after her convulsions ended. We called 911 and the paramedics showed up. By this time, she was asleep in my arms. We laid her down and they looked at her and pretty much determined there was nothing wrong. There were like 6 of them, just standing over her, not offering her oxygen or anything. They left, not suggesting that we ride with them in the ambulance to the hospital. Eric and I were confused and frightened and ended up staying at home, unsure of what just happened. Hailey went back to bed with me as Eric left for work. We woke up around 7 am and went downstairs, like usual. I fed her another full bottle. She was acting fine. She was smiling, laughing and playing. She became sleepy and I put her down for her nap around 9 am. I sat down on the couch and about 20 minutes into her nap, I heard something strange on the monitor. It was like a choking sound and I just knew it was happening again. I think it only took me three steps to make it up to her room, I was practically flying to get there. I opened the door, went to her crib and there she was, having a seizure.

She was straight as a board, arms down at her sides and legs straight. Her head was tilted up and her eyes rolled back. She was convulsing. I grabbed her and she was almost limp in my arms. I tried to get her to respond, once again, nothing. I ran downstairs and called Eric to tell him we were going to the ER. I waited until I could get her to respond to me and then we jetted off. Once we got to the ER, they had nurses there, putting needles in both of her little arms, fishing for veins to get blood. We’re sure they spent about 15 minutes on each arm. Hailey was screaming. They then pricked her foot to get the blood because they couldn’t find a vein. She ended up having another seizure right there in the ER. They gave her oxygen and Ativan to help prevent another seizure. They did a spinal tap to test for meningitis and a cat scan. The results of the cat scan came back before we left the ER to be transferred to another hospital with a pediatric unit. The scan showed a cyst on her cerebellum. We were told at that point it shouldn’t have anything to do with the seizures. Then, someone from the lab came and had to try to get blood again, so there she was, screaming, again.

I went with Hailey in the ambulance and Eric followed. We arrived at the other hospital and she was admitted. She had her fourth seizure shortly after being admitted. She was given more Ativan and then a loading dose of Phenobarbitol (anti-seizure med). She was pretty groggy from that point on. The rest of the afternoon and early evening, we just sat and spoke with the doctor and nurses and held our breath that she would not have another seizure. That evening, all hell broke loose. We were not allowed to feed her because she was scheduled to have an MRI and EEG first thing in the morning. She was inconsolable. My poor, helpless little 5 1/2 month old. She was crying and upset and groggy and we were tired and scared and angry. Needless to say, none of us got much sleep that night.

Wednesday morning arrived and the EEG was performed and results showed no seizure activity. Results had come back from the spinal tap, no Menengitis. Other results showed that other levels were normal. She was then sedated and brought in for an MRI. We were able to view the MRI and see the cyst on her brain. The Neurologist and Neurosurgeon then both spent time with us, talking about the cyst and the seizures. At this point, we still do not have any answers as to why this happened. We were reassured that Hailey is fine, the seizures did not harm her in any way. We were not reassured, however, that it would not happen again. The rest of Wednesday, Hailey ate and ate and ate and then slept. We were all able to sleep a little better that night.

Thursday arrived and I thought we would be able to go home and the doctor came in and told me they were going to run one more test on her. A neogram, i believe. It was to test for acid reflux because apparently, they have linked some seizures to it. So, once again, discomfort for my little baby. She had a tube with a probe at the end of it placed into her noise down into her esophagus. This was to measure the stomach acid. Friday morning came and the results were fine, no acid reflux.

We were finally discharged Friday afternoon (yesterday) and so far, everything has been fine. Hailey is taking her full bottle (an extra ounce each, as a matter of fact). She is looking plump and healthy again. We were all able to get a better night of sleep last night.

My stomach is still in knots. I fear every moment that she will have another seizure. I am worrying myself sick and I don’t know how long it will be before we can put this in the back of our minds. I feel like I need 100% proof that it will never happen again and that is something that I will never have. I think what makes it worse is that she is so little and helpless.

So, for now, we will go on each day hoping and praying that this was just a fluke and it won’t happen again. Our baby has always been so healthy, I have a hard time believing that she might actually have a problem. It’s too coincidental that this happened right at the time she was so sick. We just want to get back to normal and have everything be ok. For now, she has to have a repeat MRI in a month to check on the cyst on her brain and probably another follow-up after that. Maybe this happened for a reason – so we knew about that cyst and we could do something about it if it grows?

All we can do is try to get past this and treat our baby like we did before all of this happened. I am one ridiculously worried new parent right now.