When people ask me what’s wrong with Eleanor, why she’s in the hospital, I stumble a little bit. I say “um” and “well” a lot, before finally coming up with “she doesn’t eat.” That is simultaneously true, and completely NOT the whole story. I mean, the feeding stuff is what keeps her admitted to the hospital instead of at home, so that’s the big focus for now.
But even that single piece of the puzzle is a little hard to explain. In a nutshell, she has never taken feeds well by mouth, and was aspirating liquids when she tried. In addition, she has extreme reflux, which makes it darn near impossible to keep much of anything in her stomach (and is also a nasty deterrent any time she tries a bottle – it all comes right back up). So, she no longer takes anything at all by mouth, and is tube-fed straight into her intestine, bypassing the stomach. To that end, she is having surgery on Monday. She’ll have a g-tube placed to deal with the fact that she can’t feed adequately by mouth, as well as a procedure called a “fundoplication” to tighten the opening between the stomach and esophagus, to deal with the reflux. I can barely express the degree to which we tried to avoid the surgical option, but here we are. At least it’s a ticket home. I’m sure I’ll have plenty to say about life with a g-tube baby in the weeks and months to come.
After all this time and the unbelievable number of tests she’s had done, Ellie has no single, consistent, comprehensive diagnosis. She remains, for the most part, a collection of unusual symptoms and characteristics. Now with a few inconclusive test results thrown in. While the feeding problems are our current focus, it’s entirely possible that they are simply a symptom of something else.
One of the things the doctors picked up on from day 1 is that she has very low tone. Not in the extremities – her arms and legs move pretty well and are reasonably strong. No, she has low tone in her trunk. Even as a one-day-old newborn, she couldn’t pull her head up the way you’d expect an infant to do. That is still the case at two months old. While most babies are starting to gain some control over those big noggins of theirs (and Ellie’s is bigger than most), hers still flops backwards alarmingly and is only showing slow, small improvement. Is the feeding trouble related to this? Maybe, since the low tone also seems to affect the smooth muscle of her organs (like the stomach). Sure. Possibly. No one can or will say anything definitive.
The low tone seems to (maybe? we think?) be a neurological issue. Or maybe a genetic one? Let me tell you something about genetics and neurology – these are two specialties that like to run LOTS and LOTS of tests, and then say, “well, we’re not sure. We’ll just have to wait and see how she develops.” Yeah, that’s the best I’ve gotten over the last two months. Of all the tests, she had two come back with some kind of abnormal result. She had an MRI that showed “simplified folding” in her brain, but neuro is hesitant to say what that might mean. And she had a chromosomal study that showed a duplication in one small piece of one chromosome. Genetics, shockingly, is also hesitant to make any grand statements. Both departments, however, are fascinated by Ellie and want to follow her as she grows. Lucky us?
The area affected in the MRI result might relate to gross motor or cognitive development. Maybe. The genetic duplication has shown some correlation to Autism Spectrum disorders or developmental delays. But we all remember the first lesson from statistics class: correlation does not imply causation. It’s possible our entire family has the same duplication, and you’d never know if you didn’t have this test done. Also, the two test results are not necessarily connected to one another.
I’m sorry, am I being vague? Well, yeah. Welcome to my world.
All I want to know is how this is going to affect my kid, and what that will mean for her life. But, absent a crystal ball, no one can tell me that. My hunch? I think we will see developmental delays, but I have no idea in what areas or how dramatic. Will she walk at 9 months, at 19 months, or not at all? No idea. Will she have a feeding tube for six months or six years? No idea. Will she talk or read or do multiplication or make jokes? No idea.
She’s a big question mark. I suppose you could argue that all babies are, that you never know what you’re going to get until it happens. But when you start out your life with more than two months in the hospital, surgery, and a feeding tube, when you know you’ll need physical and occupational therapy from the moment you get home, and when neuro and genetics find you “interesting?”
Yeah, we’re in for a wild ride.
But let me not forget what is right with my sweet girl. She is generally pretty mellow, and when she gets upset she is relatively easily soothed. She sleeps for nice stretches of time, even if those stretches are happening during the day instead of at night for the moment. She looks right at you, and if she’s interested, will track with her eyes and move her head to follow an interesting sound (or that pretty baby in the mirror). She passed her hearing test. She likes to chew on her hand. She’s incredibly snuggly. And if you’re lucky, she’ll give you her sweet, sly smile.
Oh, the smile. It’s elusive. It’s fleeting. But both my mom and my friend swear they saw it a few weeks ago (while I was in another room pumping, of course). My husband saw it the next day. It took me a while longer, but I’ve seen it myself. Not just the one in her sleep, and not because she’s got gas. A real, honest-to-goodness social smile. Not only is it a beautiful thing to see on her sweet face, but dammit, it’s a milestone. Right. On. Time.
Ellie has her own plan. I just wish I knew what it was.
Beautifully written post, per usual. Such a trying time for your family but it seems you are handling it with such grace. Sending good thoughts to you all for Monday.
Love from Chi.
I cannot even imagine how tough it is to not have answers. Thinking of you guys and praying for miss Ellis… more pictures please! I just love her mop of hair, such a cutie!
We’ll be praying for an easy surgery on Monday. Medical mysteries are the pits. I’ve heard we don’t know and we don’t have any answers for most of my life. Not fun at all.
I don’t know you personally and can’t remember how I stumbled across your blog. Your quilting is beautiful.
Anyway, I don’t know if neurology or genetics has suggested having your daughter tested for SMA, Spinal Muscular Atrophy but if I were you I would have them test her. It is a neuromuscular disease that is passed genetically. My 2nd daughter was born with SMA type 1.
I totally don’t want to frighten you by suggesting a disease but I also have been in your shoes and simply wanted an answer.
I’ve found that SMA is often overlooked for whatever reason but it is a simple blood test.
Two of the symptoms you’ve described your daughter having are also symptoms of SMA and that is why I’m suggesting it.
I’m sure your team of doctors has already done the test but in case they haven’t it’s worth mentioning.
Molly
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You are amazingly strong (and sane) for all you’re going through. The not knowing has got to be the worst. I hope you get the answers you’re hoping for, and that little Ellie rocks her surgery.
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It’s impossibly hard to not have all the control or at least all the answers. You are a strong, strong lady, and it sounds like Ellie is taking after her momma. Good luck, Sweet Ellie, with your surgery, and I hope you get to come home soon!
So sorry there are no answers. I can’t even imagine dealing with all of this. I hope the surgery allows her to come home soon! Thinking of you!
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Good luck with the surgery…thinking of you all. I’m sure she will be perfect just the way she is!
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I am so sorry Liz! I can’t even begin to imagine what you are going through. For what it’s worth you appear to be incredibly strong and that’s wonderful. But I’m sure you know that the smile and the eye contact and all that is a GREAT sign! I also wanted to let you know that my plus 1 baby, Jackson, had low tone in his trunk as well. We didn’t pick up on anything though until he wasn’t able to sit unsupported at 6 months, and even then he was hunched over like a little gremlin. He was never able to hold his head up while he was on his belly. He’s had all the tests and they couldn’t find a damn thing wrong with him – which is worse, I think, than knowing that there is something wrong with a definitive diagnosis. He started Early Intervention physical therapy one time per week in our home. He walked two days before his 18 month birthday – that was the cut-off for our peditrician. If he wasn’t walking by then we were off to Childrens Hospital of Philadelphia for more tests. My point is that there is hope and there WILL be answers and you’ve already shown how strong you are. God never gives us more then we can handle and Ellie chose you because she knew you would be a wonderful and caring Mama. *hugs*
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I will be sending prayers that Ellie’s surgery goes smoothly on Monday.
I work with kidlets with developmental delays, and I’ve often wished I had a crystal ball for the parents I work with. It’s so hard to tell a mom that you just have no way of knowing how things will turn out. It’s even harder now that I’m a mom myself.
Thinking of you, Liz. I hope all goes well with the surgery. Enjoy those awesome smiles!
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Hi Liz – you don’t know me and I’m not entirely sure how I stumbled upon your blog originally…it’s been years now.
I just wanted to say how impressed I am with how you’re handling all of these questions and non-concrete answers and huge maybes and all the up-in-the-airs. I love how graceful and loving you are. I also wanted to share that our son had a lot (a LOT) of unanswered issues as a newborn too and we were assured time and time and time again that all would be fine. And it was. He is not “normal”, but he’s amazing and ours. There’s a lot of blessing in the unknown. Hang in there – many prayers for a successful surgery!
Dear Liz,
How you’re managing to write so beautifully in the middle of all this, I’ll never know. I have no useful medical input, but know that we’re all thinking of you and M. and Ellie. And of course of your amazing big kids who know what adenosine tri-phospohate is.
love, L., M., A., and C.
Thinking of all five of you and sending good, strong thoughts for Monday.
Erika
Liz, thinking of you and hoping Ellie’s surgery goes quickly and smoothly. I also hope you get some answers soon. As the song goes, “the waiting is the hardest part.”
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Thanks for sharing, Liz- I’m sure it can’t be easy to talk about this . Your strength and tendency to a lighthearted outlook continue to be inspiring!
Strength tomorrow comes in knowing you are not alone. I’m glad you are sharing as I can somewhat relate. My grandfather after a stroke had feeding issues, surgery on the same flap and months of tests and therapy to figure out the aspiration thing. Granted he was a lot older than Eleanor but the fear, frustration are the same. But we had hope, prayers and friends to push us through. And maybe by sharing your story & eleanor’s story, you will learn more, find more. Hugs and if you need a hand tomorrow, call me.
Your description of Ellie’s smile is beautiful, thank you for sharing your family’s journey, as it must be so difficult. You have our family’s support and wishes for good health.
I’m so glad you decided to write this post and share. Graceful and beautiful as always. Will be thinking about you and your family tomorrow.
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I am so, so sorry, Liz. After being followed by multiple doctors for many years, I can tell you more doesn’t mean better! Tanner is somewhat of an anomoly as well. Every time we go to a doctor, they haul in some intern to “look” at him. While he looks fairly normal to me, he has markings (apparently to the medical world) that indiciate he may have a genetic issue. We’ve been offered genetic testing and we’ve declined it to date – because we’ve come to the conclusion that unless a test is going to alter his treatment, we aren’t doing it.
Praying for you guys – and that you can bring Ellie and all of her wonderful, uniqueness home soon.
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Thank you for posting an update. I started reading your blog because I’m also a twin momma. But your story of Ellie has kept me checking often because it so closely mirrors my niece’s. She is currently exclusively g-tube fed and has run the battery of tests and seen multiple experts to the same end — ‘we don’t know’. If you would find it helpful to talk to someone who has lots of experience with the g-tube, I’m sure my sister would be pleased to e-chat with you. Just let me know. Wishing you all a speedy and successful surgery and that you’ll soon be snuggling her at home.
Thinking of you all and hoping that the surgery goes well tomorrow.
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I will be praying for all to go exceptionally well tomorrow. All my words seem so inadequate right now…I will be checking in tomorrow on facebook to follow your updates. Take care, Liz.
~krissy
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Your strength right now is amazing. I hope that once you leave the hospital and get home you’ll find even more support from your EI therapists. Being an OT that also works in EI I know how stressful the feeding challenges can be. Keep asking questions and keep the doctors on their toes. Definitely ask to be seen with a team of people who work together.Not sure if they have included a metabolics doctor, but they are my new found feeding heroes. Please let me know how I can help, your daughter is off to a great start, she’s a fighter! It’s amazing what strength such little babies offer the rest of us!
I wish I had something to say or offer, but I don’t – there’s so much unknown out there in the medical world, as you know now better than anyone. We’re all thinking and pulling for you guys today and hope she is home soon!!!
Liz. This fucking sucks. I’m so sorry.
Kami recently posted..Terrorism- Violence & Family Values
you and your family are in my prayers Liz!!
xx
Thinking of you guys today! I hope the surgery goes well and she’s home soon.
Erin K recently posted..1 fun
Hugs and prayers Liz!!!
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Sending good thoughts to you all, and I am so glad the surgery went well today
Just stumbled across your blog from another blogger from priorfatgirl.com. I wish you nothing but the best with your daughter’s surgery and hope that you are able to hang in there
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Liz, I am thinking of Ellie, you and your family. You all are wonderful, wondeful people. I really hope that this is a turning point.
Here’s hoping the surgery went well.
I can’t imagine you being okay with not knowing, but you are handling all of this so elegantly. Whatever lies in Ellie’s future, she will never lack love.
My neighbour recently had her g-tube removed and is eating again. I’ll wish the same for Ellie. How are the big kids?
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I’m a little behind on email/blogs/life but I wanted to add another message of support for little Ellie! I hope she is doing well, recovering from the surgery and getting ready to come home. You are in my thoughts always.
hi liz. just wnated to say i have been reading and thinking of your little ellie. i used to work as a pediatric PT and the world of peds can be so very frustrating in ways. the other side of it is that it sounds like she is getting wonderful careful and thorough care with a team that will stick with you and the family. you are a really strong smart woman and i know that you are being the best mom and (yes) advocate for your lovely new little girl. the last line, well, you hit the nail on the head … you don’t know. but i know you will be there for every milestone aware and supportive and that is the best mom she could have in any situation. happy mother’s day, mama. let’s hope she can be home with you on that special day. xo a
Dear Liz, i can’t tell you the last time you made me cry… I wish you strength. It’s not the road you expected to travel, but God is with all of you, especially Miss Ellie. I have no words but am thinking of you.
Just saw the news that you were spring! Long anticipated, I hope you guys have a WONDERFUL time at home.
Stacy recently posted..Dealing With It
Welcome home Eleanor!!!
Hi, you don’t know me, but I’ve been reading your quilting blog for quite some time. Your little Ellie is gorgeous and will bring you great joy. My 7 year old has Down syndrome and as a result I belong to some DS forums. Low tone and reflux issues are a common issue with kids with DS (I’m sure they have ruled DS out with blood testing), but I wanted to let you know that most kids who are g tube fed usually get off the g tube in a reasonable time frame. There are feeding clinics around the country that can help with feeding issues down the road. Early intervention (we did tons of that) will be very helpful with the issues you may face with Ellie. Finally, you are not alone with your issues with your beauty–many, many children have similar issues. There are lots of forums on line that you can use to connect with encouragin parents that have BTDT. http://www.downsyn.com is one for parents with children with DS, but they are very willing to help anyone with similar issues. Good luck and enjoy your little darling.