*Written at Methodist Children's Hospital after Dylan's feeding tube surgery.
Today, I'm grateful for modern medicine, that it will allow Dylan's quality of life to be better by sparing him the exertion of sucking and swallowing his nutrition from bottles. His life will be that much nicer through spoonfuls of ice cream and mashed potatoes, and through eating at the table with his mommy, daddy and brother.
Today we no longer worry that he's not getting enough calories.
Today, I'm grateful that we had no surprises during the night--no drops in oxygen levels, fevers, infections or other issues.
Today, there is no more forgetting that we have an SMA child--no pretending that our lives fit the typical definition of "normal." We are solidly, undeniably on a path that doctors call the "disease process."
Today, I feel the weight of learning how to use the tube--how to feed, administer meds, and what to do if it comes out.
Today I feel an even greater responsibility toward Dylan than ever.
Today I am eager to start slow feedings, because it will make Dylan happy, and it is one step closer to going home.
Today I thank the family and friends who prayed, texted, called and walked with us through the last 24 hours.
Today I miss seeing Colin in the morning, and I miss my bed.
Today my heart is lightened by the return of Dylan's gummy grin, feet flapping and babbling through the morphine fog.
Wednesday, September 21, 2011
Sunday, September 4, 2011
Milestones: Dylan's Feeding Tube
Dylan has surgery to inset a feeding tube on September 20, and we couldn't be happier.
Before you get sad reading this, hear me out. Before the diagnosis, if someone told me that about their child, I would have fought back tears. But what a feeding tube represents for parents of an SMA child is a happy milestone. See, with SMA babies, the act of eating--of getting the proper nourishment by mouth--is a significant challenge. Eating means sucking and swallowing, an exercise that can be very tiring for both the baby and the parents. It means expending calories as you are taking them in. It means having to stop in the middle so your baby can rest from the strain--sometimes several times during one bottle. It means eating less and less each bottle over the course of time, and therefore more bottles and more frequent feedings in a day to get the necessary nutrition needed. It means struggling more as you grow--as you need even more. It means not getting yummy baby food that day if you haven't consumed enough nutrition from formula.
But a feeding tube means getting your calories without working so hard because they are pumped directly into the stomach. It means you can get fed part of your daily nutrition at night while you sleep--leaving daytime for play, tube feedings that don't tire you out, and eating fun foods like pureed fruit and ice cream by mouth at the table with mom, dad and brother (if you're an SMA child who can still eat by mouth, as Dylan is). It means Dylan can be weaned off bottles (and parents can be spared the preparing and washing of them). It means growing faster and (potentially) having more energy to play Peekaboo Barn on the iPad--which totally rocks.
It's the closest to mirroring the regular milestone of weaning your child off the bottle.
With an SMA Type 1 baby, your concept of milestones is turned on its ear. Accepting the feeding tube as a benefit is a major step of acceptance with SMA. Essentially, you must alter your thought process to accept a new definition of milestones, so that your child can still be enriched by pleasurable experiences. I look forward to feeding him mashed potatoes much like I look forward to pulling him in his first wagon ride--which I'll accomplish by placing his Tumbleform chair inside the wagon and securing it around the sides so he doesn't fall out.
It's a practice akin to starting yoga, in which you have to contort your body into positions that are not normal for you, and you practice them over and over, and they get easier. It's no coincidence that people refer to yoga as a practice. You may get good at those positions, but there are always more, new positions you have to adjust to doing, and in that practice you open up physical and mental pathways you never knew you could.
I now look for new ways to help him swing, bounce on the trampoline (in my arms and very gently, of course) play, sit. I never would have let a 10-month-old use an iPad before Dylan, but his touching the screen to make the next barn animal appear and make a sound is his way to play.
Thank God for feeding tubes, and Thank God for Dylan.
Before you get sad reading this, hear me out. Before the diagnosis, if someone told me that about their child, I would have fought back tears. But what a feeding tube represents for parents of an SMA child is a happy milestone. See, with SMA babies, the act of eating--of getting the proper nourishment by mouth--is a significant challenge. Eating means sucking and swallowing, an exercise that can be very tiring for both the baby and the parents. It means expending calories as you are taking them in. It means having to stop in the middle so your baby can rest from the strain--sometimes several times during one bottle. It means eating less and less each bottle over the course of time, and therefore more bottles and more frequent feedings in a day to get the necessary nutrition needed. It means struggling more as you grow--as you need even more. It means not getting yummy baby food that day if you haven't consumed enough nutrition from formula.
But a feeding tube means getting your calories without working so hard because they are pumped directly into the stomach. It means you can get fed part of your daily nutrition at night while you sleep--leaving daytime for play, tube feedings that don't tire you out, and eating fun foods like pureed fruit and ice cream by mouth at the table with mom, dad and brother (if you're an SMA child who can still eat by mouth, as Dylan is). It means Dylan can be weaned off bottles (and parents can be spared the preparing and washing of them). It means growing faster and (potentially) having more energy to play Peekaboo Barn on the iPad--which totally rocks.
It's the closest to mirroring the regular milestone of weaning your child off the bottle.
With an SMA Type 1 baby, your concept of milestones is turned on its ear. Accepting the feeding tube as a benefit is a major step of acceptance with SMA. Essentially, you must alter your thought process to accept a new definition of milestones, so that your child can still be enriched by pleasurable experiences. I look forward to feeding him mashed potatoes much like I look forward to pulling him in his first wagon ride--which I'll accomplish by placing his Tumbleform chair inside the wagon and securing it around the sides so he doesn't fall out.
It's a practice akin to starting yoga, in which you have to contort your body into positions that are not normal for you, and you practice them over and over, and they get easier. It's no coincidence that people refer to yoga as a practice. You may get good at those positions, but there are always more, new positions you have to adjust to doing, and in that practice you open up physical and mental pathways you never knew you could.
I now look for new ways to help him swing, bounce on the trampoline (in my arms and very gently, of course) play, sit. I never would have let a 10-month-old use an iPad before Dylan, but his touching the screen to make the next barn animal appear and make a sound is his way to play.
Thank God for feeding tubes, and Thank God for Dylan.
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