Posted By Posting
Sep 05, 2008
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
One year ago today
Some of you will be getting this in your inbox today (along with a pic)

One year ago tonight, about 9:30 pm, Elyse recieved her life-saving intestinal surgery. She was inpatient at Sutter Memorial's Pediatric Intensive Care for 12 days that admit. It is hard to believe that a whole year has passed since then. I can still smell the medical tape, see the tube that was down her nose, hear the beeping of the monitors, feel the hardness of the short couch I slept curled on for 2 weeks, and taste the awful hospital food! It feels like yesterday. In many ways, this hospital visit is more memorable and imprinted in my brain than her NICU stay, because for 4 days no one could figure out what was wrong with her. For several weeks before that admit, we were sure she was going to die because no one seemed able to help her. It was all very traumatic!

But praise God, one year later we have our beautiful daughter. Her scar is nothing more than a short white line. Her delayed gastric emptying is mostly a thing of the past. She takes only one med, plus her vitamins. Her reflux still acts up, but that is resolving beautifully and is absolutely nothing compared to what it was even 3 months ago. She is vibrant, ACTIVE, strongly independent, and joyful. Who would have thought that a 3-pounder who could not breathe, eat, regulate her temp, keep her heart rate up, create enough red blood cells, have a bowel movement, and who had a hole in her heart, a hemangioma near her brain, and a deadly intestinal defect etc etc could turn out to be so "normal"? Well, I think God must have big plans for her (and us).

Please continue to pray for her and us as we struggle through what we hope is the end of the feeding stuff and reflux. Hug and kiss your children and thank God for them and for the Gifts that they are.

Sep 05, 2008
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
I now have tears running down my face. God Bless you and everything you have been through. You are a special mommy and have done a beautiful job! It is amazing what she had gone through and you would never know. Keep up the good work. Thanks for sharing! Jennifer ((((((HUGS))))))
Sep 05, 2008
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
All I have to say is....Praise God for Elyse! I am so happy for you and for Elyse, what a blessing it is to have children who are healthy and how much more of a blessing it is to those who know what it's like to fear for their child's life! Plus, she is darling. You can see how vibrant she is in the picture!
Sep 05, 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
She is such a miracle baby! And so darling. I am amazed too at what she has overcome and how well she is doing now. You two are so awesome! -Sarah
Sep 05, 2008
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
Sharon - where was that hanky alert LOL! What a beautiful tribute to all that she (and you) has overcome over the past year. I hope that you'll print that out and put it in her baby book. Or maybe put it somewhere to read when she's out raising hell at 16 :-)
Sep 05, 2008
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i am so glad you let us be a part of your journey, it means the world to me that elyse is alive and well. although i may never meet you in person i am so glad you are a part of my life- even if it is because of such an awful thing like reflux lol. *hugs* Happy "re-birthday" elyse! :)
Sep 05, 2008
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
What a special little girl you have. I'm so glad that i've come to know the both of you. Thank you for reminding us that love of a child is so amazing. G-D Bless Elyse..
Sep 06, 2008
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.
Wow -- what a beautiful tribute to Elyse, your experience, and the miracle that this wild and crazy path called life can be. Thank you, congratulations on all that you have both overcome, and may the future be full of joy for your whole fmaily.
Sep 06, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Wow, what an amazing story! You are both amazing and a blessing. Thank you for allowing us to be part of your life and to share this beautiful moment. What a miracle!
Sep 06, 2008
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I knew you had it rough, but I had no idea it was so horrible. My heart goes out to you all. What a little fighter she is! And so is her mommy!! Elyse has always reminded me of my friend's baby, Brooklynn. Brooklynn was born at 33 weeks and 3 lbs, 13 oz. She had pyloric atresia. She is now nearly 14 months (next week) and she is tiny, but she is thriving! She is a super active and has a storng personlaity, just like your DD. Thank God for babies like Elyse and Brooklynn.

I am so touched by this story. Huge to you both.

Sep 06, 2008
amber f
I'm tearing up to. That was beautifully written. Your family has been through a lot. She is a miricale and it is humbling to think that we were able to share this moment with you. These babie are Gods greatest gift.
Sep 06, 2008
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.
ohhhhhhh how wonderful! to come from such a unknown outlook...... I found myself shaking my head reading your post! What a wonderful miracle she is!
Sep 07, 2008
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
Thank you for all your kind responses. I love PAGER :) I hope that I can be a support for other moms who have to go thru similar situations and am starting to take measures to do so (perhaps part of God's plan and reason for giving me Elyse and her issues and my own fertility issues).
Sep 08, 2008
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
Thanks for sharing your amazing experience. I'm deeply moved and inspired much by your story. God bless little Elyse, you and your family.
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