Nightmares

The late night hours of July 2 / early morning of July 3 were pretty typical for our house. Addie took a late nap after a fun day playing with Grandmama while I worked and started cleaning the house for weekend company, so I was afraid it could be hard to get her to sleep that night. My guess was right, and by midnight she was still going strong, harassing Philip while he worked on his notes and Emails from the day's work calls. Happy as a clam and playing cheerfully in the floor despite the late hour, we enjoyed her energy more than usual since she had been sick the prior week. Eventually, she fixated on Philip's pen and notebook and playtime came to an end so her daddy could finish his work and get some rest. So, I took her to our room and pulled her in bed with me. Bad habit, I know, but since she had been sick and sleeping with us while her fever was so high, this had proven to be the best way to get her to sleep. The plan from there was to slip her into her own bed once she was out. Pretty typical night by our standards.

That's when the nightmare started.. She had continued to climb and play in bed, and I would firmly lay her back down and snuggle her in close to get her to settle down. She must have settled for a bit because I dozed off. I woke up at 1:30 and noticed she was basically asleep and decided she needed to be in a deeper sleep to make the transition to her bed. Around 2:35 she was up, rolling around again, much like she had been earlier, and it seemed to be a part of her usual routine. It was then that I noticed she wasn't crawling up and over the pillows like usual, but her arm seemed stuck under them, which was odd because, well, it's a pillow and she's an active, strong 2 year old little girl. A few minutes before this she had signed "all done" while sitting up, and I remember muttering, "yes, yes you are all done playing.. It's time to sleep." Anyway, I noticed her eyes were wide open and not blinking and she just looked distressed. Thinking it was a tough dirty diaper or something like that, I picked her up to go check things out. Once we were into the light I could tell her breathing was shallow and her body felt "wrong". There were no tremors, no noise, no warning signs.. But she was having a seizure. I can't even think about if it had been an earlier night and she were in her bed by herself.. .

Philip was wonderful, and he didn't ask any questions when I said something was wrong and we needed to go to the hospital. When I told him we needed to call 911 instead of driving ourselves, I could see the concern in his eyes, but he picked up the phone and jumped into action. We had changed, grabbed a bag for Addie and pushed the 911 operator again and again to tell the ambulance to hurry faster, all while taking turns holding our sweet, immobile baby girl, telling her it was ok and begging her to keep breathing. 

The EMT's were amazing, and they got us to ETCH in a hurry. They were able to give Addie some medicine to try to stop the seizure, held oxygen up to her nose and got her O2 saturation back up out of the tank, and somehow helped keep her mom from falling apart. I couldn't help but remember the last time I looked out into the blur of lights and darkness in the back of an ambulance, the first time we saved Addie's life when I was in preterm labor. After that, I kept my head down and focused on remembering all of the details the EMT's needed. Those girls were wonderful. ..working on Addie without ever looking up, talking to her, giving me enough to do to keep me busy, and at one point one of them pushed my hair out of my eyes so I wouldn't have to let go of Addie. Such a small gesture, but it touched my heart.

The ER staff was equally wonderful, and I swear we had most of their staff in our room as they debating intubating her and pumped more anti-seizure meds through the IV they finally got in.  My stomach was in my throat when I realized they were debating ET tube sizes.. The medicine that helped stop the seizure also made it hard for her to maintain her airway and breath. Thank God we were able to stimulate her to remind her to breath, her O2 sats stayed up throughout, and she managed to avoid the vent. Philip was awesome at this part, tickling her feed, under her arms, anything to irritate her and keep her semi-conscious. X-rays, CT scans, an IV, and several blood draws later, we had nothing to do but wait and watch the hospital monitor that we had come to know so well in the NICU. The worst of the meds wore off and she was able to rest and breath at the same time. Philip and I took turns reclining her on our chests so we could hold her while keeping her airway open and cannula in place. When we were stable enough to leave the ER for a room on the second floor, all we knew was this wasn't a shunt malfunction.

From there our day was a blur of EEG testing, resting, holding Addie so we could keep her calm and she could rest, and waiting to talk to doctors. It was nearly 4 before we saw another doctor and heard about test results. Addie's EEG showed some abnormalities, and she has a seizure disorder. ..that's all the pediatrician could tell us. Later we saw the neurologist who shared the details with us, and gave us both the good and bad news. Good news - Addie's sweet little brain is functioning in most areas and on most levels as a normal 2 year old (music to this micro preemie mama's ears!!). Bad news - in two of the lobes on her right side, there were abnormalities that would indicate that she has a seizure disorder. They can't call it epilepsy at this point because she has only had one event, but based on her history and abnormal EEG, she feels confident that Addie does need to be treated for the seizure disorder and followed with subsequent EEG's. She may never have another one. ..or she may have one tonight. There's just no way to know. So, her recommendation was to start her on maintenance anti-seizure meds and go from there. There are some negative side effects to the meds that we will be watching closely for - dizziness, trouble with coordination, delayed learning process, irritability and mood swings. Most of those are exactly what we don't need with everything else we are working on. ..but the risk of what could happen if she has another seizure is too great not to treat at this point. Most seizures last 1 - 2 minutes. ..hers lasted 45 minutes to an hour. So, we are home now with a maintenance med and an emergency med to use if she should have another seizure lasting longer than 3 minutes. Thank God that ignorance is bliss, and Philip and I didn't realize how dangerous a seizure lasting as long as hers was until well after the fact. ..she should bounce back and be 100% back to normal in a few days. Next time, we may not be so lucky. So, we have a plan in place with the emergency meds, and this mama likes nothing more than a plan.

I would love to tell you all about the emotions of the whole thing and what I'm thinking now ... but beyond the obvious ones like fear, anger, and exhaustion. ..I don't know quite what to tell you. It's still a blur, and I'm still processing. Obviously, we knew this was a possibility, but we had been home so long without problems that we thought we were in the clear. When it happens, your entire body just goes numb, and you're living in a dream, functioning on pure adrenaline. I'm proud of us for handling the situation, making quick, good choices, and for keeping her safe until help got here. I was and still am angry that she's had to deal with something else and there isn't a darn thing we can do about it. I'm not mad at God. ..I'm just angry at the unfairness of life. I get that it isn't fair, but it doesn't mean I have to like it. I know God will use this and Addie and us. ..but can't He just use someone else for a change or just have something hurt me instead of her so we can all learn / help / be used? Our sweet girl has already faced enough adversity, is conquering it every day, and is still touching other people's lives. ..does she really need to stack this on top of everything else? And while I'm venting. ..it really isn't fair to have a shunt and a seizure disorder. ..if she has another seizure, she will always have to go to the ER or at least to the hospital to check on her shunt just in case it's a shunt problem and not "just" a seizure. *sigh*

At the end of the heart ache, tears, anger, and fear. ..I am thankful. Every rant in my head or to a friend ends with "but I'm just thankful. ..". I'm thankful that I was awake and laying beside her. I'm thankful that Philip was on board without a second's notice and was moving without a second's hesitation. I'm thankful that we had just the right EMT's and ER staff. I'm thankful that the medicine worked and that she didn't have to be intubated. Most of all, I'm thankful to be home with our precious little miracle tonight. She's not a bit sleepy and that's ok. I'm thankful for the dozens of friends who texted, wrote messages, Emailed, and simply loved us through this newest challenge. I'm thankful for friends who brought us food, mowed the yard, and ignored us when we said we didn't need anything. I'm thankful for my sister-friend who drove to the ER in the middle of the night just to sit in a waiting room in case I needed her, which I did. I'm thankful for our NICU family who continues to love us and cheer us on. I'm thankful that as much as I'm scared of another seizure happening, our sweet girl is alive and home, and if we have to worry about seizures in order to have her, then we'll just worry about seizures. I'm thankful for the other preemie moms, heart moms, and therapists and doctors in our life who love us and our little girl and who understand how much this set back hurts without us saying a word. So, you see, in the face of one of the worst nights ever (and we've had a few. ..), there is still so much to be thankful for, and I'm doing my best to just focus on that.

Our sweet girl is recovering amazingly well. The host of meds she received between the ambulance, the ER, and starting her maintenance meds are finally wearing off, and she's starting to act like herself. The only residual effects we are still seeing are wobbly legs, so she needs extra help trying to walk right now, and she's a little more irritable. We are all still in need of extra naps and rest, but we're getting there. We'll follow up with her pediatrician on Monday and neuro soon thereafter. Philip and I have aged at least another 10 years. ..but all things considered, we are doing ok.

Resting on Daddy

Sweet, groggy smiles later that night.

Holding her baby while Philip holds his.

Note that she didn't sleep one moment in her hospital bed. ..only on me and Philip.

My girl and her baby resting on my lap.

Home at last!! Poor tired girl wanted to check out all of her toys but was SO, so tired.

Mommy-Daughter Nap Time

Notice that she and baby get to cuddle but I have to maintain my distance. ..

Totally not feeling the love.