So, Brei has just celebraed her 2nd birthday and I'm a frazzled mom. I'm running a business from home and raising a 4 year old preschooler and a 2 year old angel who can't seem to get well, visiting Children's Hospital more than I care to think about and now I'm finally venturing out and going to Help Me Grow outings by myself. In the past I wouldn't really go anywhere unless my sweet Barry was by my side. I'm feeling a little more comfortable in my new role as nurse and doctor but I'm getting really sick of all of the stares. By this time I'm noticing that not only does my daughter not look 2, but she looks (to others not me) sickly, puny and she behaves...well autistic. Can I say that? Dare I say that out loud? We don't have any other diagnosis at this point except for failure to thrive, asthma and cataracts so could this be what autism look like? I quickly put that thought at the other end of my brain and promise myslf I'll never have to think about that AGAIN!
So Breianna's nutritional needs really aren't getting any better...we are visiting the feeding team very rarely but they did mention at one of our previous appointments, if she continues to not tolerate formula you may try blenderized foods. It was just one more thing and I pushed the thought aside. I pushed it aside until I couldn't look at her one more day without feeling the guilt that I hadn't tried that one last option to help her with her nutrition. She was now getting sick ever 4 weeks, it would last about 8 days, she'd lose all abilities and just lay on the couch and vomit. We'd end up in the hospital on IV and then come home. She'd perk up just in time to get sick again. I was beginning to think that we needed to revisit neuro and GI but I knew that GI in Cincinnati was not the place for Brei. Now I want to say that GI in Cincinnati Children's is amazing, top notch, one of the best in the country, but they just didn't talk to us about motility and we wanted a motility study. About this time we met the Batton's and Holly was a nurse, g-tube mom and had a daughter a year older than Brei that was the closest thing to Brei I'd ever seen. So we became friends...not instantly....she was tired and I was tired and why make a new friend when I live in a very shut in world where I can't get out much to nourish a friendship. So we'd se each other at Help Me Grow from time to time and then in July of 2006 we said....hm...I wonder if other parents could use some of our experiences...by now we had learned to navigate the system, insurance, BCMH, Medicaid, Home Health, nursing care, respite etc etc etc. Let's start a support group to see if other families will come. So - we did and for 3 months we were the only ones there...we decided to give it one more go and that month 2 more moms showed up so we decided that we'd meet monthly and just meet people where they are. In that time the mom's really pushed me to leave Cincinnati Children's GI and go to Columbus to Dr. Mousa and DiLorenzo and the motility clinic. If they couldn't help me then probably no one could. I prayed over it and my husband and I made the switch.
In 2006 we had our first appointment in the motility clinic. By this time I am doing blendrized food.....looking back it was a very blah job of it but I was learning and reading and doing the best I could. We were basically taking baby food and blending it up with her formula into a thick puree that would fit down the tube. She wasn't vomiting as much but she still wasn't gaining a considerable amount of weight. Dr. Mousa was impressed with the blenderized diet we were doing and said to keep it up and in the meantime we were going to do the full fledged motility study. In other words, we were making Columbus our new home for awhile. We were driving there often. One of the blessings of living in Wilmington, Ohio. We are 1 hour from Cincinnati Children's, 40 minutes from Dayton Children's and 1 hour 10 min from Columbus Children's (now Nationwide Children's Hospital). So, our first round of motility testing was a 3 day stay and lots of testing. Brei hung in there. The findings were scary...things like mitochondrial, biopsy, neurogenic dysmotility etc etc are coming out of the doctor's mouths. The thing is, scary findings are better than no findings. I was beginning to think I was crazy so I was overwhelmed but almost overjoyed to hear researchable words on the lips of Brei's doctors. We had nothing before and now we have real words to find out the meanings for. The biopsy came up negative for mito but we know now that a fresh biopsy is best and just haven't retested. The next set of studies did show neurogenic dysmotility and after her swallow study she was diagnosed with dysphagia.
I felt like we were finally getting somewhere. Except, there's not a pill or a surgery to fix this. And it gets worse....or better, I really didn't know at the time....Neurology called us in to discuss some new "old" findings. It seems something had been overlooked. It took a neurologist in Chicago to see what our docs had missed. It was hard to see but it was there.....too much brain, ripples in fact. Extra ripples that shouldn't be there all folded over on top of themselves doing extensive damage to her nervous system. BAM! I felt like someone had just shot me in the chest. Do I dare ask if there is a cure? Does this extra ripply brain situation have a name? Do I want to know...I'll just google it later, stay up all night crying and be no better off than I am now....or will I? So I asked....no, there is no cure, no surgery, no fix. No making my daughter's body work right? No making her talk? No making her be able to swallow or suck or chew? And the name of this monster is so hard to spell I'll have to practice....Polymicrogyria. Wow, can you repeat that and then spell it for me please doc? I'm going to need to get more schooling to be able to explain this one to people :).
To top it all off I'm pregnant....oh man....I don't think I can take it. Neuro is saying things like genetic and I wouldn't advise having more children and well it's too late for that. So I worry and fret for 9 months fearful, high rish, more ultrasounds than I care to have to pay for. And little sister comes into the world and then can't breathe and then I'm asleep and then my husband comes in wiping back tears followed by a doctor from Cincinnati Children's and I just scream......and I'm not buying what this doc has come to sell me because I have Brei at home who needs me and if my Baylie has to go to the hospital and stay there then who TAKES CARE OF BREI!!!!!!!!!!!!!!!!!!!!!!!!!!!! Well I needed to pull it together because I think Bethesda North has a floor for loonies and I didn't need to end up there. So I watched Baylie (on life support) in her little pod with a dozen docs from Cincinnati Children's whisk her away....and then the docs gave me a shot and I was out like a light. When I woke up my docs had released me and my friend was waiting to drive me to Children's, my new home. I was worried and I knew Brei was with my inlaws so we'd be ok. Just get me there so I can hold my new baby. I don't know if I've held her yet. I had, but I didn't remember. I didn't get to hold her again for 4 weeks. All I remember is the docs talking about a Congenital Diaphraghmatic Hernea. I would have plenty of time to research in our little pot in the NICU. They said we'd be there for aobut 4 months so to get comfortable. But, I have this special needs daughter at home that really needs me to be there for her. She has therapies and a neuro appointment next week and a case study she's a part of and not to mention I have this son who is 5 and will be starting kindergarden and he needs me. No one was listening. It ended up being a 6 week stay, a surgery and recovery and home. So she was our MIRACLE child. Everyone was talking about it. She was the buzz in the hospital, still is. She's the baby that shouldn't have done so well and did better than anyone could imagine. She's the pie in the sky for what CDH parents want. We had met families whose children weren't doing well an so the guilt set in. Why did Baylie do so well and these other children are not? Well, that wasn't God's plan for her. I believe he needed me to have more energy for Brei. To continue being her defender.
So we pressed on....Brei is now 3 with a baby sister at home and did I mention, just before she turned 3 she started walking. Yep you heard me right, she's walking. Just about the time the therapists were talking about a wheelchair, Brei had other plans. So, walking brought it's own set of challenges, more than when your typical child walks. This is different, this is a kid who doesn't understand things about the world and who has a high pain tolerance, I don't mean she's tough I mean it's dangerous. She loves extreme hot and extreme cold because I think that's when she finally feels. Nerve damage, gotta love it. So, now that she's upright she can touch say the stove....and she wants to touch it and burn herself because it wakes up her brain and she can feel it. That's just an example....but it happened more than one...OUCH!
Nutritionally we are climbing..I mean, we're in the upper teens at this point....she's tiny, people mistake her for a 1 year old but hey, she's here, my laundry piles are a little smaller and I don't reak of vomit 24/7. At least her vomit, I do have a newborn at home. :)
Stay tuned......
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