Posted By Posting
Sep 24, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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We Are The Mommies
Yesterday, my family was over at my house. Quinn had just gotten out of the bath and she was running around naked. As I looked around the room, I saw the amazement in each of our eyes. And then my sister commented, "I can't believe how much healthier she looks." Quinn had enough fat on her body that her butt was actually jiggly. Her color is so healthy and her eyes are so bright. She has muscles now, that you can see as she flexes them. She no longer has a cloudy thought process and her words are clear and developmentally on target. It's hard to believe that a year ago, Quinn was on all continuous tube feedings, was constantly having diarrhea and was still in and out of the hospital. She was severely to profoundly delayed in her speech and I was fighting to get someone to please help me help her. Two years ago, Quinn was struggling with her weight and development. She got sick constantly in her lungs and was on antibiotics every couple of weeks. We were threatened with the NG tube. Today, quinn does come with quite a bit more equipment and meds. Sometimes, if I think about how medially involved she is, I get sick to my stomach. Sick just thinking about the 911 calls, trips to the ER and hospital stays it has taken to get here. I get sick thinking about watching my baby turn blue and go into convulsions. I get sick thinking about just how sick my baby was until today. But she is, finally, healthy enough. Healthy enough to have been out of the hospital for three, almost four whole months. And guess what... I was right. Sometimes doctors don't listen. Sometimes, they rely more statistics than the individual patient. Quinn is a great example of the "exception". And I have been right all along. Quinn is healthy today because I made sure she had what she needed. So I encourage all you mommies to follow your instinct. It is right. That is why we are the mommies, because we know. -Sarah
Sep 24, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Awwww...I love the jiggly little bottoms!! I'm so glad that she's doing well - it's a testament to your perseverance. It's been really inspiring to watch. I hope that if I'm ever in the same situation that I'll have the strength to do what you've done. Give that little (healthy) girl a hug for me!
Sep 24, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Beautiful, as always, Sarah. Thanks for the reminder... I'm so glad to hear that Quinn is doing so well these days!
Sep 24, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Sarah- It is so great to hear such a happy testament. I know that you guys have struggled so much and to hear where you are now is wonderful. Quinn is so lucky to have you as a mom. I hope things continue to get better. -Amanda
Sep 24, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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More equipment yes, but so much happy new stuff too :) Great to hear
Sep 24, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
such a wonderful post!!!!!!!!!!!!!!!!
Sep 24, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Sarah, I assure you that you are one mom that I will never forget and for the rest of my life I will use your story as an example in conversations :) You truly should write a book someday about Quinn and all the stuff you've been through with her.

I'm so excited about how long she has gone between hospitalizations. I remember when you were so excited to go for a month!

yippee and hugs for Quinn!

Sep 24, 2008
nicholasmom
So glad she is doing so well. Sounds like you have both been through so much. You are an amazing mom and Quinn is an amazing girl!
Check with your
doctor first!