October 1, 2015

the drama that is Seth's life sometimes

At the beginning of August, Seth got a cold and then a fever. It started in the morning on a Wednesday and I gave him some ibuprofen. Around noon or one it was really high, like 103.6 high but I gave him some tylenol and the fever went down a bit and he slept. By five that evening, it was high again and this time it didn't go down with medicine so we made an appointment with the after hours clinic at the pediatrician's for 7:30 pm. At seven, after taking his temperature again (103) I was about to get in the car with him when he started zoning out and drooling weird bubbles. This seemed really really wrong so I made Sam and Carter come too so I could sit in the back with Seth. While we were driving, the drool turned into full on foaming at the mouth and his left arm started twitching, then jerking, then his whole body was jerking. A full seizure. Like you picture when you hear the word seizure, not like the ones he's had in the past. Very different. I called the doctor right when we left and they said go straight to the ER so we did. Sam was speeding like crazy and we ran a red light but we made it there. I jumped out of the car and carried Seth, still seizing, and ran into the ER, choking back sobs and barely able to stammer out that my child was seizing. I had to sit and check in for probably less than a minute while the front desk called ahead and got a bed and then they wheeled the two of us in a wheelchair back. I laid him on a bed and then for the next hour, twenty nurses and techs and doctors worked on him. They had to give him a ton of sedatives to get the seizure to stop. It was about 30 minutes long, from starting at home with the drooling to stopping in the ER, which is long. For perspective, we now have a prescription for a rescue med so that if he has another seizure like that, we can give it to him ourselves instead of going to the ER and we are supposed to give it to him if the seizure is longer than 5 minutes. So yeah, 30 minutes is quite long. But the team there at Utah Valley was so amazing and focused and kind to me and I loved them all so much that night.

Anyway, they gave him so much sedation and paralytic that he couldn't breathe on his own so they had to intubate him. Then he was stable and sleeping. They got the fever down too. They did a spinal tap to rule out meningitis and did other tests and bloodwork to figure out what he did have, which turned out to be adenovirus. It normally acts like a cold but sometimes can be really brutal, I guess. Then it was calm for awhile and Sam took Carter home to get ready for bed. Before leaving, Carter spent the whole time sitting in the hall with games on Sam's phone and nurses bringing him Oreos and root beer so I think it wasn't too bad of an ordeal for him. After they left, the medical staff told me that there is no pediatric ICU at Utah Valley so Seth had to be transferred to Primary Children's and protocol is the life flight helicopter, even though he wasn't in any danger really. So that was actually super fun! I got to ride it with him and Sam drove Carter to my mom and dad's for the night and then he met me at Primary Children's. 

Seth stayed knocked out on his meds until about one am and when he started to wake up, they took out his breathing tube. I slept in a little sleeping room for parents for about four or five hours while Sam stayed up with Seth since he was supposed to be awake at work anyway. Then in the morning they released us from the ICU to the regular infant unit with the hopes of going home later that day because he was just normal sick, not really hospital sick anymore. The seizure was declared to be due to the fever with the addition of Seth being prone to seizures in general. But we kept staying because he couldn't keep his oxygen levels up while he slept so he had to keep the little tube in his nose. Sam and I traded off nights since only one of us could stay in the room with Seth overnight. The other one slept at my parents who were still watching Carter, bless them, and then we were back at the hospital first thing in the morning to relieve the poor night duty parent. Let me tell you, sleeping on a little couch in the hospital in a teeny room with an extremely mopey, fussy baby who is miserable and attached to tubes and wires and can't crawl around or sleep well is THE WORST THING EVER. Except for the other worst things ever which really are much worse and I should be slapped in the face for complaining when I knew he was going to be fine. But it was very exhausting. FINALLY on Saturday morning they released us with an oxygen supply to take home. He was actually still on oxygen at night for an entire month which is crazy but the pediatrician told us every week or so when we went in to check his oxygen levels and they were continuously low that sometimes kids just need it for a few weeks even if otherwise they're fine. Which is he is now, thank goodness. It was so weird to be at Primary Children's for something other than tuberous sclerosis.

One of the doctors actually found a growth on his spleen while we were there that is tuberous sclerosis caused. Should be fine as long as it doesn't get too big, doesn't cause any symptoms now. We have had a couple ultrasounds on it and it's about 7 cm, called a hamartoma meaning it's made out of the same tissue as the organ it's growing on, and is holding steady in size. Apparently though, it is quite rare, even for tuberous sclerosis patients to have growths on the spleen so hooray for my over-achieving child. They wanted an MRI of it just for more detail since it is rare and we went in for that a couple days ago but Seth refused to sleep even with the sedation meds. Every time they turned on the MRI machine, he would pop up awake. What a weirdo. This was his third MRI and he'd done fine the first two times. They maxxed out on the sedation and he still was awake. So now we have to schedule it for under general anesthesia, yay. Besides that, we seem to be done with the infantile spasms! Such a little miracle that I didn't think was going to happen. We are off the Sabril, which is the medication for the infantile spasms that can cause permanent vision loss, and we had his final eye exam and no vision damage either! Sigh of relief. For now, medically, he is quite fine, we are just working on catching up his development. He had another assessment a few weeks ago and no significant delays in most categories, except cognitive and receptive communication so we are working hard on those! He is coming right along, I feel. I don't know what the future holds for him, but I am feeling extremely good about things as they stand. 

With all of this for the last couple months, I have been so grateful for my relationship with God. I know He is real and He is there. I have felt Him. He has answered my prayers, over and over. I wouldn't be able to sleep so many nights for worrying about what might be except that I pray for peace and calm and it immediately washes over me. It is a tangible thing, the Spirit. So easy to dismiss when you hear someone else talk about it, but so undeniably real when you seek for it and experience it yourself. I read a quote recently from President Henry B. Eyring that expressed so perfectly how I've been feeling: "We all know that human judgment and logical thinking will not be enough to get answers to the questions that matter most in life. We need revelation from God. And we will need not just one revelation in a time of stress, but we need a constantly renewed stream. We need not just one flash of light and comfort but we need the continuing blessing of communication with God." YES. I can't live without it.


September 1, 2015

august, instagrammed


August 1, 2015

july, instagrammed


July 1, 2015

june, instagrammed


June 1, 2015

may, instagrammed


May 22, 2015

raising a baby with tuberous sclerosis

I've been putting off writing this post for six months now. It's something I need to write, for my own remembrance, but life since Seth was born has been hard. Very hard. Exhaustingly, overwhelmingly, heartbreakingly hard. But also beautiful and wonderful and joyful. And I need to write it down. But it's like how I love the movie Cast Away but I never want to watch it. Too much of an emotional investment. That's why I haven't written this down yet. But I need to! So I am.

The first four months of Seth's life exist in my mind as a blur of tears and wondering why we had children at all. It didn't have much to do with the tuberous sclerosis, actually, except for the millions of doctors appointments (seriously, I counted, and it averaged one appointment per week for the first six months. That is a lot). It was just that he was a colicky newborn. If you haven't had a colicky newborn, don't do it. Carter was in behavioral protest mode, wanting his old life back where he got all the attention, Sam started school full-time again (plus work full-time) when Seth was a month and a half old, and Seth fussed all the time. All. The. Time. He had to be held and bounced and nursed constantly. Poor Carter was so bored and attention-less. And, you know, no one slept ever. I got in the habit of getting pajamas laid out and dinner ready to pop in the microwave (cooking! What's that!) and blinds closed and everything ready for the Two Children Bedtime Routine I Had to Do By Myself by like four pm when it was relatively calm because trying to do it when everyone was tired and screaming was something I dreaded all day long. The Two Children Bedtime Routine I Had to Do By Myself was a thing. It deserves an actual title because that's what it felt like to me. The event I dreaded and simultaneously looked forward to all day because if I could complete it, it meant a couple hours of freedom. Ha I just remembered that back then it used to take an hour or so of bouncing Seth in his bouncer in the living room (because Sam was asleep in our room where the crib was) before I could risk transferring him to his bed. Oh newborns! The ridiculous things we do for them!

I really really really considered being done having children because I was so miserably tired. Poor Sam was gone and exhausted all the time and I was trapped in the stupid house with the very unhappy babies. It was a party. There were good days, of course. Like weekends and holidays. And I would take the kids to my parents so someone else could bounce the baby and play with the toddler while I sat on the couch and sighed loudly. And we got Seth on some antacids and that definitely helped. Poor baby. And really, he was the sweetest for the few minutes every hour or so that he was calm. And we started purposefully giving Carter as much positive attention as we could and that helped him settle into our new life much better.

So we made it out of the newborn stage. And the colic went away. But Sam was still gone most of the time and I still had two kids to take care of by myself. And then, only two days after I posted Seth's birth story, only one day after he hit four months and I posted on instagram how great and miraculous it all was that he was fine, he had his first seizure.

The first one was the worst one. And I immediately knew what it was, and moreover, what it meant for our future. And I sobbed at Seth to please stop, no no no no no, please no, don't do this, no. I had hoped so much that maybe he didn't actually have tuberous sclerosis or maybe it was going to be a very mild form and we would be fine. The geneticist had told us when he was two weeks that if he didn't have a seizure for the first year, he would be in great shape. But then he did. And a seizure means brain tumors. It means medication. It means immediate medical intervention and the very real chance of developmental delays. I knew all of that immediately and watching that first one felt like my heart was shredding inside me.

We went to the ER after that first one and then started on the road of EEGs, MRIs, neurologists, and medications. We did a round of super high dose steroids to begin with, which stopped the seizures for a couple weeks but had a trade-off of a terribly fussy baby. Steroids are the worst. They tasted awful and we had to shove so much down his throat every night. And they made him so irritable. Poor, poor baby Seth. We tapered off those and had a little while of a preventative med, Keppra, that he also hated, but then the seizures started creeping back. So we tried another round of the high dose steroids, again with the hating and the terribleness, but it didn't work the second time. I should also explain that these seizures are not what you normally picture when you hear the word "seizures." They are a specific type called infantile spasms. Not nearly as scary to witness, thank heavens, and not as traumatizing for the patient, I don't think. But still damaging to the brain in the same ways. Anyway, after the second round didn't work, we started on a newer medication called Sabril with its terrifying possible side effect of permanent peripheral vision loss which they cannot predict whom it will affect. So every six months we have to have an eye exam, which because Seth is so young, has to be performed while he's totally out, under general anesthesia. It's treated the same as an actual surgery, just without any cutting open anything. And then the eye exam doesn't actually prevent vision loss, of course, it only tells us if it has started so we can stop the Sabril. Lovely, right? But, it has made some difference in his seizures, so that is great. And it doesn't bother him, which is even better. The colic was gone, the steroids making him hate life were gone, and his own wonderful personality could finally be seen. We've been on the Sabril about four months now and since then, he's been a beautiful, happy, sweet baby.

We added another medication, Trileptal, on top of the Sabril about six weeks ago because the seizures kept pushing through periodically. We haven't quite seen a complete ending of the seizures even now (although they are less frequent and less intense) and maybe we never will. Sometime recently I had to grieve again at the loss of expectations. The geneticist who told us that no seizures in the first year was best, also told us that if he did have them and we could get them under control (stopped) quickly, he would also be fine. So of course I expected that, too. But it hasn't happened. And I have had to come to terms with the fact that he is delayed developmentally. All my friends with babies Seth's age were posting things their babies could do, just as updates as they grew, and Seth wasn't doing any of them, not even close. Not sitting on his own, not playing peekaboo, not really interacting yet, etc. It was painful to accept. Every time he had a seizure I would worry and cry and ask God why are these still happening? And every time I noticed what he couldn't do yet, I would do the same things. It was a combination of letting go of my expectations, realizing that Seth is beautiful just as he is, learning that God knows and loves my little baby, and figuring out how to hand over the burden of my fears to the Savior that made me ok. There is so much power and beauty in the Atonement that before this experience I had only glimpsed. Now it is my rock to cling to in the stormy sea. I always knew that theoretically I could use the Atonement for more than my sins but I never knew how. Now I do. Christ is yoked to my burdens with me and will pull almost all the weight if I let Him. I can't ever express my gratitude to Him for that enough.

After accepting that things as they are will be ok, I called early intervention services and now Seth has an occupational therapist that comes to our house twice a month and he is progressing! He can sit up on his own! He almost has the pincer grasp! He makes faces and imitates laughter! Even if he's slower than a normal ten month old, it isn't bad. That was/is the take-home message for me. It isn't bad. In fact, it is good! He is all things good! There are hassles and inconveniences, but Seth himself isn't difficult. He is sweet and loving and learning and growing like any baby.

So now, life is better. I have a much better perspective. The ins and outs of the tuberous sclerosis are not more than I can handle, in partnership with my Savior. Sam is graduated and home so much more now and that has made a huge difference. Seth is a doll and I love seeing his face light up and giggle at everything every day. And Carter is a gem most of the time too. Smart as a whip, I swear. He talks like a six year old and has the funniest imagination. He asks questions all. day. long. and you can practically see his brain working as he assimilates your answers and works out new paradigms. He plays with and takes care of Seth, too. They laugh at each other constantly and I'm getting a glimpse of the bond they're going to share forever, I think. Makes it all worth it.

This is a novel and probably too self-indulgent to really publish but I will anyway, at least for myself and whatever posterity might want to read it eventually. If you are actually still reading (bravo!), know that I know that my life is so much easier than many have it. There is so much to be grateful for and I don't intend for this to read as a huge complaint but I did want to be honest about how I was feeling at the time. Overwhelmed and scared and tired, but certainly not with a monopoly on pain or hardship. And finally, know what I have learned from this. God doesn't abandon us, ever. He knows us and He loves us. We are His children and we have His ear, always. We can't do it alone and we never have to.


May 1, 2015

april, instagrammed


April 1, 2015

march, instagrammed

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