(OT) 10 Years Ago Today (and beyond)

[Guest guest]

10 years ago today, I was standing in the Neonatal Intensive Care Unit at the Gundersen Lutheran Medical Center in LaCrosse, Wisconsin, scared to death. The night before I had ended my 7 short but excruciating hours of labor by delivering a 1 pound, 6 ounce baby boy, measuring 13 inches long. This came after a pregnancy lasting only 5 1/2 short months. Even though the doctors had given me assurances that babies born at 25 weeks gestation still could have a better than 90% survival rate, looking into the warmer at that tiny red miniature version of an infant, with his ventillator and all manner of wires and tubes coming him every which way, I couldn't believe something - someONE - that small could live, could be okay. His eyes were still fused shut, and his ears were still fused to his head. As my husband, mother-in-law, and sister-in-law drove me home on Valentine's Day, I felt numb. I cried. I had moments where I thought maybe I

hadn't actually been pregnant. Or maybe my baby had died and I'd just convinced myself he was in the hospital so I didn't have to deal with it. I would call the hospital and ask about him, sometimes surprised when a nurse had a report instead of telling me there was no baby by that name. But he was alive, and he did okay. In fact, he did better than most 25 weekers do. He grew faster, had less NICU complications, and was home sooner than most. He was a miracle by even their standards! came home with oxygen, but was otherwise doing great. All of the "could be's" and "should be's" of micro-preemies had passed us by - blindness, deafness, cerebral palsy, brain bleeds, etc. He did have a tiny hole in his heart that they weren't concerned about.Our next few years were rough at times. He had several hospitalizations because of pneuonias, but otherwise he was doing pretty well. I did notice that his immune system wasn't the strongest when

he started getting cold sores and they went absolutely insane and broke out all over his face. And the time all three kids were swabbed for strep and Sam was positive, the other two were negative, then 3 days later, had full blown Scarlett Fever.By around age 4 or so, things seemed to settle down, and seemed to be doing pretty well. He went to Head Start, then on to Kindergarten, and First Grade. That was when everything seemed to fall apart. His first two lung collapses. The discovery that the hole in his heart had gotten bigger and would need to be repaired. Learning he had hypothyroidism. All of this between September and December of his 1st grade year. By the end of the school year he'd missed over 60 days of school, and had a CT scan showing that his lungs were terrible. We went to the University of Minnesota Medical Center that summer to have the hole in his heart fixed, and to see a Pediatric Pulmonologist. (The week

before the trip, he had his third lung collapse, and therefore his third chest tube.)In the past 2 1/2 years since, had another 5 lung collapses (each with a chest tube), discovery of liver disease, a GJ-tube placed, a PICC line placed, a double lung transplant (2/26/2006), 4 more chest tubes, 2 more PICC lines, 13 ERCP's with stent placements, a hickman line placed after being septic from a PICC line infection, and eventually getting a liver transplant (7/16/07). We finally came back home in October, 2007, and rejoined the school world in November. As of yesterday, Fox is 10 years old and in 4th grade with a new set of lungs, a new liver, and a new outlook on life. He's working on getting caught up in some areas of school, but is doing okay overall. He had his check up with GI and his liver transplant surgeon last week, and, though GI would like to see him gain a smidge of weight, he is healthy and doing well, and

they are very pleased with how things are going. He also had his central line removed while we were there. Children's Miracle Network wants to feature him, once again, as one of their Child Champions for this year's telethon. He's a video game freak, likes Tony Hawk, adores his new kitten, and can't wait for summer so he can ride his bike, again, and take swimming lessons for the first time. He's also excited to be able to finally go to phy ed class, now that his line is out.And I can't find the words to describe how blessed I feel to have this wonderful little boy still with me today, to have been able to hug 8 times last night before he went to sleep.

Ami - Migraines, FMS

mom to - 9 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADD, Osteopenia, Varices http://caringbridge.org/visit/seanfox

mom to Emma - 13 yrs - Migraines

stepmom to - 14 yrs - ADHD, ODD

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

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[Guest guest]

Beautiful, Amy.God bless him and you, his wonderful mom.Lee10 years ago today, I was standing in the Neonatal Intensive Care Unit at the Gundersen Lutheran Medical Center in LaCrosse, Wisconsin, scared to death. The night before I had ended my 7 short but excruciating hours of labor by delivering a 1 pound, 6 ounce baby boy, measuring 13 inches long. This came after a pregnancy lasting only 5 1/2 short months. 

[Guest guest]

Ami, You made me cry, I am an NICU nurse and unfortunately we never get to watch our babies grow up, and get to know how they are doing. Thanks for sharing your story, Happy Birthday to your miracle baby! Sands UC 2002, PSC 11/07leedeubert wrote: Beautiful, Amy. God bless him and you, his wonderful mom. Lee 10 years ago today, I was standing in the Neonatal Intensive Care Unit at the Gundersen Lutheran Medical Center in LaCrosse, Wisconsin, scared to death. The night before I had ended my 7 short but excruciating hours of labor by delivering a 1 pound, 6 ounce baby boy, measuring 13 inches long. This came after a pregnancy lasting only 5 1/2 short months.

[Guest guest]

Ami,

Your story is amazing, and I’ve always admired your positive attitude

and tenaciousness. Congratulations on ’s tenth birthday and his medical

miracles!

Ricky

PSC 2003

From:

[mailto: ] On Behalf

Of Ami Fox

Sent: Wednesday, February 13, 2008 12:42 PM

To: tamahr@...; Alycia Goggin-Weighter; McBride; Andy

; Helen Steidl; Shoop; Anita Haderly; Autumn Cole; Barb

Henshaw; Beth Roder; Woodhull; Chloe; Mikesell; Cory Schultz;

Deanna Vinovich; Geneva ; Jean Moe; Jeannie Zuelsdorff;

Amundson; Jill Hansen; Jodee; Jodi McCrady; Joni Kay Zeiler; Juli Evers;

Kriston ; Frei; Liz Frei; Lonnie Frei; Lori Arentz; Lynn Sturm;

Mallory Adriaens; Martens; Eggen; May Cross; Mahan; Misty

Quiring; Forman; Batinich; Pagans with Fibromyalgia; Patti; PSC

Moms; PSC Support; rachel carlson; Ernst; Sharon Sauby; Lee

Briggs; Lindbo; Strauss; Rod Schultz; Mears;

Pederson; Stanoch; Shanai Cole; Sharon Ernst; Mohns; Tami ;

Teri Fry; Tesa Rude; Theresa Cormican-Tanajauskas; Tia Bourgoin; Traci ;

Keim

Subject: (OT) 10 Years Ago Today (and beyond)

10 years ago today, I was standing in the Neonatal Intensive

Care Unit at the Gundersen Lutheran Medical Center in LaCrosse, Wisconsin,

scared to death. The night before I had ended my 7 short but excruciating hours

of labor by delivering a 1 pound, 6 ounce baby boy, measuring 13 inches long.

This came after a pregnancy lasting only 5 1/2 short months.

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

Never miss a thing. Make Yahoo

your homepage.

[Guest guest]

Thank you for sharing this inspiring miracle with all of us.

Congratulations on your son's birthday. It's great that he can be so

healthy and happy after going through so much!

>

> 10 years ago today, I was standing in the Neonatal Intensive Care

Unit at the Gundersen Lutheran Medical Center in LaCrosse,

Wisconsin, scared to death. The night before I had ended my 7 short

but excruciating hours of labor by delivering a 1 pound, 6 ounce

baby boy, measuring 13 inches long. This came after a pregnancy

lasting only 5 1/2 short months.

>

> Even though the doctors had given me assurances that babies born

at 25 weeks gestation still could have a better than 90% survival

rate, looking into the warmer at that tiny red miniature version of

an infant, with his ventillator and all manner of wires and tubes

coming him every which way, I couldn't believe something - someONE -

that small could live, could be okay. His eyes were still fused

shut, and his ears were still fused to his head.

>

> As my husband, mother-in-law, and sister-in-law drove me home on

Valentine's Day, I felt numb. I cried. I had moments where I thought

maybe I hadn't actually been pregnant. Or maybe my baby had died and

I'd just convinced myself he was in the hospital so I didn't have to

deal with it. I would call the hospital and ask about him, sometimes

surprised when a nurse had a report instead of telling me there was

no baby by that name.

>

> But he was alive, and he did okay. In fact, he did better than

most 25 weekers do. He grew faster, had less NICU complications, and

was home sooner than most. He was a miracle by even their standards!

came home with oxygen, but was otherwise doing great. All of

the " could be's " and " should be's " of micro-preemies had passed us

by - blindness, deafness, cerebral palsy, brain bleeds, etc. He did

have a tiny hole in his heart that they weren't concerned about.

>

> Our next few years were rough at times. He had several

hospitalizations because of pneuonias, but otherwise he was doing

pretty well. I did notice that his immune system wasn't the

strongest when he started getting cold sores and they went

absolutely insane and broke out all over his face. And the time all

three kids were swabbed for strep and Sam was positive, the other

two were negative, then 3 days later, had full blown Scarlett

Fever.

>

> By around age 4 or so, things seemed to settle down, and

seemed to be doing pretty well. He went to Head Start, then on to

Kindergarten, and First Grade. That was when everything seemed to

fall apart. His first two lung collapses. The discovery that the

hole in his heart had gotten bigger and would need to be repaired.

>

> Learning he had hypothyroidism. All of this between September and

December of his 1st grade year. By the end of the school year he'd

missed over 60 days of school, and had a CT scan showing that his

lungs were terrible. We went to the University of Minnesota Medical

Center that summer to have the hole in his heart fixed, and to see a

Pediatric Pulmonologist. (The week before the trip, he had his third

lung collapse, and therefore his third chest tube.)

>

> In the past 2 1/2 years since, had another 5 lung collapses

(each with a chest tube), discovery of liver disease, a GJ-tube

placed, a PICC line placed, a double lung transplant (2/26/2006), 4

more chest tubes, 2 more PICC lines, 13 ERCP's with stent

placements, a hickman line placed after being septic from a PICC

line infection, and eventually getting a liver transplant (7/16/07).

We finally came back home in October, 2007, and rejoined the

school world in November.

>

> As of yesterday, Fox is 10 years old and in 4th grade

with a new set of lungs, a new liver, and a new outlook on life.

He's working on getting caught up in some areas of school, but is

doing okay overall. He had his check up with GI and his liver

transplant surgeon last week, and, though GI would like to see him

gain a smidge of weight, he is healthy and doing well, and they are

very pleased with how things are going. He also had his central line

removed while we were there.

>

> Children's Miracle Network wants to feature him, once again, as

one of their Child Champions for this year's telethon. He's a video

game freak, likes Tony Hawk, adores his new kitten, and can't wait

for summer so he can ride his bike, again, and take swimming lessons

for the first time. He's also excited to be able to finally go to

phy ed class, now that his line is out.

>

> And I can't find the words to describe how blessed I feel to have

this wonderful little boy still with me today, to have been able to

hug 8 times last night before he went to sleep.

>

> Ami - Migraines, FMS

> mom to - 9 yrs - Double Lung Tx 2/26/2006, PSC - Tx

7/16/2007, Diabetes, Hypothyroid, GERD, ADD, Osteopenia, Varices

http://caringbridge.org/visit/seanfox

> mom to Emma - 13 yrs - Migraines

> stepmom to - 14 yrs - ADHD, ODD

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

>

>

>

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