This is the story of my life as a SAHM to a deaf-blind former 24 week preemie. Isolating, frustrating, heartbreaking, and so worth it.
Monday, December 17, 2007
P.S.
You might have noticed in my last post that I mentioned Noah "happily playing" in the church nursery. If you know us well you're probably scratching your head. Since when does Noah happily play in the nursery? That's the place where he screams, sobs, hold his breath, and cries 'til he vomits (not that it takes much). Apparently not anymore. It would seem that when the developmental books said that separation anxiety lasts until 2 1/2 they weren't kidding. Noah turned 30 months on November 30, and in the last few weeks a surprising change has happened. We first noticed that something was up at the Chattering Children Christmas party - he wasn't scared of Santa! Then at our Sunday School Christmas party he happily went into the basement to play with the teens hires to entertain the kiddos. When he didn't scream through his speech therapy session I knew something was up, and when he was unaffected by a change of room at feeding therapy I was hopeful. But it wasn't until he happily walked into church nursery this morning that I began to rejoice. Instead of starting to cry in the parking lot he was content to be carried, and when we reached the nursery doors he hopped down and went to play. When I said bye-bye the resulting "Mommy!" had me a bit worried, but he just ran up to me for a hug and a kiss and went right back to playing. This evening at the choir concert he didn't even look back for a hug. The boys were playing cars and he wasn't about to be left out. Somewhere when I wasn't looking my baby turned into a big boy.
What do you say...
...to one of the people who is responsible for saving your baby's life? I firmly believe that had Noah been born at the big, important NICU he was transfered to he wouldn't be alive today. What Noah's birth hospital lacked in pediatric specialists they more than made up for with dedicated, caring staff and the best in developmental care. Going to the NICU reunion last year was hard. What do you say to the nurses who fought by your side willing your son to live? What do you say to the neonatologists who sat by your child's bedside waiting for the inevitable, hoping that statistics would overlook one little boy?
Last night at church was the choir Christmas concert. Brian was singing and I was listening while Noah was happily playing in the nursery. After the concert I had Noah on my hip while talking to a friend. From behind me I hear "Noah? Is it really Noah?!" and turn around to find a familiar face - one of the NICU respiratory therapists, who's in-laws apparently attend my church. He was so excited to see Noah. He said that they still talk about him, which I knew since some of the nurses keep in touch. Our ped. lives next door to one of Noah's former primaries and I've given him permission to keep her updated on Noah's progress. This respiratory therapist wasn't Noah's main one, but he was around enough to get to know us well. He's a rather large man and I recall marvelling at how gentle he was with my tiny baby. Noh developed some pretty significant issues with tough the first time he went into septic shock and everyone walked on tiptoes around him. The respiratory therapists would hold Noah's hand and sing or talk* to him to keep his sats up while the nurse got a blood gas. When I saw this man I wanted to tell him how fondly I remember his part in the NICU. I wanted to thank him for his part in saving my son's life, because I know that it was the little things they did that kept him alive to keep fighting. When it came down to it, it was Noah that continued to fight when there was no medical reason left for him to be alive. But he wouldn't have had that chance if it weren't for the faithful, caring staff at that first NICU.
*Although this was likely around the time when his ears were damaged by the Gentamycin (his levels were way too high due to renal failure), he continued to respond to sound until about a month after this.
Last night at church was the choir Christmas concert. Brian was singing and I was listening while Noah was happily playing in the nursery. After the concert I had Noah on my hip while talking to a friend. From behind me I hear "Noah? Is it really Noah?!" and turn around to find a familiar face - one of the NICU respiratory therapists, who's in-laws apparently attend my church. He was so excited to see Noah. He said that they still talk about him, which I knew since some of the nurses keep in touch. Our ped. lives next door to one of Noah's former primaries and I've given him permission to keep her updated on Noah's progress. This respiratory therapist wasn't Noah's main one, but he was around enough to get to know us well. He's a rather large man and I recall marvelling at how gentle he was with my tiny baby. Noh developed some pretty significant issues with tough the first time he went into septic shock and everyone walked on tiptoes around him. The respiratory therapists would hold Noah's hand and sing or talk* to him to keep his sats up while the nurse got a blood gas. When I saw this man I wanted to tell him how fondly I remember his part in the NICU. I wanted to thank him for his part in saving my son's life, because I know that it was the little things they did that kept him alive to keep fighting. When it came down to it, it was Noah that continued to fight when there was no medical reason left for him to be alive. But he wouldn't have had that chance if it weren't for the faithful, caring staff at that first NICU.
*Although this was likely around the time when his ears were damaged by the Gentamycin (his levels were way too high due to renal failure), he continued to respond to sound until about a month after this.
Thursday, December 6, 2007
Thank You God
Like a good little Baptist Noah has been learning to say a prayer before he eats. Sometimes he's thankful for more than his food, though. I'm thankful for Signing Time, too.
Tuesday, December 4, 2007
Happy Birthday?
Today I'm celebrating the first anniversary of my 29th birthday. As if being 30 wasn't hard enough, today is also the 2nd anniversary of Noah's PICU admission. A lot of preemie moms seem to really struggle around their baby's birthdate, but I was too sick at that point to really remember much. What I do remember is the sheer terror of giving my baby back. I fought for 6 months to keep him, willing him to come home, and then 3 days later had to give him back. Not the greatest feeling. Hopefully we won't be inviting the ambulance crew to my party this year.
Sunday, December 2, 2007
Walmart Strikes Again: Noah's Special Needs
I know, I know. I should shop at Target. When Noah stops drinking 120 cans of Pediasure a month I'll consider it. Until then I'm a Walmart shopper, but it doesn't mean I have to like it.
Today we needed Pediasure and Noah didn't look ready for a nap, so we decided to go as a family. Since we had coupons (thanks Kim!) my husband and I went through the line separately. When Brian was checking out the sales associate asked, "Is that one of them special needs kids?".
My husband, assuming he saw the CI said, "He's deaf, that was a cochlear implant that you saw."
The man said "No, besides that."
What exactly does that mean? I doubt they teach that at Walmart manners class. You're supposed to ask "Did you find everything you were looking for?" not "What are your kid's diagnoses?"
Part of me is paranoid now. Can you look at him and know he has special needs? Do I care if you can? Will he care?
Perhaps the sales associate just wasn't used to seeing happy toddlers at Walmart...
Today we needed Pediasure and Noah didn't look ready for a nap, so we decided to go as a family. Since we had coupons (thanks Kim!) my husband and I went through the line separately. When Brian was checking out the sales associate asked, "Is that one of them special needs kids?".
My husband, assuming he saw the CI said, "He's deaf, that was a cochlear implant that you saw."
The man said "No, besides that."
What exactly does that mean? I doubt they teach that at Walmart manners class. You're supposed to ask "Did you find everything you were looking for?" not "What are your kid's diagnoses?"
Part of me is paranoid now. Can you look at him and know he has special needs? Do I care if you can? Will he care?
Perhaps the sales associate just wasn't used to seeing happy toddlers at Walmart...
Saturday, December 1, 2007
Two Years Ago Today
Two years ago today Noah sat in his stroller for the first time. (Yes, he really was that tight - gotta love EI!)
Two years ago today Mommy and Daddy got to take a picture with their son outside for the first time.
Two years ago today Noah got to ride in a car (he'd previously been in only a helicopter and an ambulance).
Two years ago today our son came home after more than 6 months in the NICU. He brought with him O2, an NG tube, a Kangaroo Pump, a Pulse Ox, an Apnea Monitor, an Ambu Bag (thankfully never needed!), a nebulizer, way too many medications, and a schedule not conducive to sleep. It didn't last long, but that's another story...
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