If there is one thing that is certain when it comes to Gracie's health, it's that things can turn on a dime. We've learned that we can't count on this hour being the same as the next, we can't make plans - - even carefully laid ones - - without them often being shifted to "Plan B" or even "Plan C." We cherish the quickly moving moments, hours and days that she feels well and we nurse her through the moments, hours and days when she doesn't - - those days that our hearts are heavy and time seems to stand so very still.
The pattern is nothing new, so you'd think I'd be fully accustomed to it. But, during the trauma of the summer and 42 more days in the hospital, I guess I somehow allowed myself to hope the pattern would change - - that maybe, after all she'd been through, the reward would be more stability for my chronically ill daughter. That is not the case.
Since her discharge in August, she's had three ear/sinus infections and two cycles of abdominal migraines. The most recent abdominal migraine started on Sunday and lasted through Thursday; the sinus symptoms seemed to have started Saturday... but it's really so hard, with these repeated problems, to tell what is actually coming first. Are the sinus symptoms a result of the migraine brewing or is the migraine a result of the sinus/ear pain? Or, are the sinus symptoms just environmental allergies flaring up (because everyone else in the family was irritated by their allergies)? I am not certain we will ever know. And this time, we had another factor involved because of an attempt to change formula.
At her GI visit two weeks ago, the doc was happy with her tolerance, but not happy that she is losing weight... we are back to that pattern, too. Only this time, she is not losing nearly the calories as she was before. Her bad days now yield more calories than her worst days before surgery. Because of the weight loss, the doctor upped her calorie requirement, figuring that being sick so much is messing with her metabolism. He also wanted me to change her formula. I was not happy with that idea and I expressed my concerns. He heard me, but still wanted to try - - his hope was that all previous issues were solely related to the complications of her her stomach and liver being so tightly fused, the hernia, etc. He wanted me to bump her calories and once that was successful, try a whole day on the new formula.
She easily handled the addition of the calories and once she was successfully there for a week, I added in the other formula. I only did half and half... for one feeding... so she only had a total of three ounces of the new formula. One ounce into the second feeding, she was white as a ghost, clammy, had beads of sweat under her eyes, was gagging and writhing around in agony. I cut the feeding pump off and she proceeded to have crazy, major diarrhea about twelve (not exaggerating) times in a four hour period... straight-out-the-diaper-no-matter-how-tight-it-was kind of diarrhea. Poor sweet girl... and poor mama for cleaning it up and dealing with the guilt of trying the formula when I knew the doctor's logic was not at all logical.
We are still working our way back to full feedings, but she is perky again and I'm grateful. She went to school for a few hours on Thursday and Friday. Hopefully she can hold onto this space for a while - - feel well and do the things she loves... go to school and therapy, see her friends, play outside. I'm amazed, as always, by her resolve. She passes through those painful, dark places all too frequently and comes out the other side with her spirit seemingly unscathed. I, on the other hand, am not unscathed and try to recover from the heartbreak and exhaustion of those lows. As I shared with a dear friend the other day, I tell myself to exhale, for lately I seem to be spending a lot of time holding my breath, knowing that the next downturn is looming around the corner. Instead of focusing my energy and worry there, I try to capitalize on the days Gracie feels well and fully live in the space between.
10 comments:
I LOVE the picture of her and Preston... absolutely sweet and precious!! She looks so cute in that skirt!! Hope the space between is a large space for ya'll! Thinking of you often!
Kim
"S" is for strength and you have more than anyone else I know! "S" is for sweet, such as the picture of Gracie and Preston talking. And "O" is for one. One minute, one hour, one day, one month, one year at a time, which is how I know you live your life. You are one amazing woman, mother, wife and somehow you seem to find the time to be an amazing friend! Love to all of you. I hope Gracie continues to feel better!
My heart soars to see these photos of Gracie girl out in the fresh air, sassy and sweet in her cute outfit, inspecting leaves and feeling the grass under her heels.
Friend, your heart and mind and body experience more tumultuous ups and downs than most of us will ever know as you so beautifully care for your Gracie and the rest of the Flock - and all that life throws your way. In the face of what is, you lead such an inspiring example of perseverance, love, advocacy and (as your daughter is so perfectly named), grace. So much love being sent your way...*h
I love these photos! I think these are some of my favorite ones of Gracie, and the one with Preston is adorable. I am sorry that the formula change didn't work. GI wants us to try changing formula again also, and I am resisting. Every time we try it's a nightmare, just like you described. Our dietician agrees with me, but GI is insistant. I hate it. :( We do a blenderized diet during the day, but she gets Neocate Infant overnight. Yes infant, even though she's almost 7! Speaking of 7, I really hope you will all be feeling well and able to come to Emily's party on Saturday!! It's going to be fun, and most of our other special needs friends will be here. :)
We absolutely love you Swann Family, and are here cheering you on, praying, and sending lots of hugs and kisses your way.
We relate only too well to all that you go through, and if it helps to know, you guys are such an inspiration to us.
Much love,
the Nelsons
Adorable I love how she is watching her brother and really "listening"
I found your blog from your SIl, Vanessa. :) And I read it ever so often and pray for you and your family. Your strength is amazing.
My fave pictures are all of them! Especially the conversation one. What a moment that I'm sure you wished could of lasted hours. :)
I love these pictures of Gracie--outside, soaking up the sun, looking so perky and happy! I'm sorry to hear that she's still experiencing frequent illnesses, though, and that the feeds still aren't going well. I was really hoping her surgery would improve all that for her.
Hang in there, Kristi. You are an amazing mom! I don't think any of us can watch our kids go through what they do, no matter how minimal or severe, and come out unscathed. But I think those dark times make us appreciate the "in betweens" all the more.
Big hugs to you!
Kristi you are such a good momma! So smart to take advantage of those times in between. I hope they become more abundant for Miss Gracie. You're amazing AND you've got some super cute kiddos too! That last pic is completely adorable.
Kristi,
Wow! This post choked me up. I am so sorry that you have gone through repeated tough times with Gracie's health. Caden has those "down" days, too. Not nearly as much as you amazing people have had to face, but they are there. I can so relate with "telling myself to exhale". When Caden has a rough day it is so scary because you never know where it will lead. "Will he be hospitalized?", "How long will this last?", and even bigger, scarier questions that I am sure you have asked yourself as well.
You are all always in my thoughts, and I loved those beautiful pictures of Gracie on the "space between" day. You can really see that twinkle in her eye. I am sure you just cherish those days.
Would love to meet up sometime and talk "in person" :).
XO,
Mary
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