Posted By Posting
Jul 12, 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
Sort of Sad About This Suggestion
I have a friend whom I haven't seen since 2006, but we still chit chat. I emailed her an update about Quinn because she asked me about her. she writes me back with a bunch of suggestions that just sort of struck me the wrong way. She told me that maybe it would be better for her to vomit and just deal with her acid reflux. that the reflux will get better as she gets older. That she would feel terrible if she could not vomit. That i should just let her eat normally and remove the feeding tube and that when she gets older she can tell me how she feels. That maybe she should just try to live a normal life. Although she is concerned about her sleep apena, she said that all these surgeries and hospitalizations are just "torture". Mind you, she has a very healthy normal child who has never spent a day in the hospital. It's not like I WANT to torture my child. It's not like she is on all these things because she WAS being a normal kid! It's not like I WANT this life for my baby girl!!! I seriously don't know how to respond as I am sure that she is just trying to help. It is just a little hurtful. How did we get here anyway? This journey that we travel is unimaginable for some and it is so hard for anybody to put themselves in anybody's shoes. -Sarah
Jul 12, 2008
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!
This is harsh, but did you say she's a FRIEND? I guess she is trying to help, but she should know that those type things aren't gonna help. I'm sorry...after all you do for Q, you'd think your friends would be supportive. In all honesty, if my friends gave me those suggestions, I'd let them know that until you live through what you've lived through, you don't have a clue.
Jul 12, 2008
PAGER Volunteer Services Coordinator
Melina 7/24/02 now reflux free!!
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I am SO SORRY! I am sorry your friend was insensitive and I am sorry you are going through all of these things with Quinn. You are right, no one is going to "get it" when they have a healthy kid, that is just the bottom line. I know that doesn't make it any easier when people say things the wrong way. You ARE doing what you think is best for Quinn and that is all that any of us can do! People who think like your friend are usually the same ones who say, "Oh, all kids eat when they get hungry". Not true!!!

Compassion is a lost art.

I am with Melissa, as far as what my response would be. Though I might not be a sweet and patient. LOL. ;)
Jul 12, 2008
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site:
Oh Sarah, you def. didn't need to hear that ....that's for sure!!!! I am soo sorry you had to deal with a "Friend" who didn't seem to have a clue.
Jul 12, 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
Wow, I'm just amazed sometimes what comes out of people's mouths. I'm sure you will handle it much more sensitively than I would - she wouldn't hear from me again.
Jul 12, 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.
Until people have walked in your shoes they have no right to give suggestions...JMHO. They don't know the consequences that giving even simple motrin can have on a reflux baby. HUGS
Jul 12, 2008
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
I just can't believe how people respond sometimes. I am sure you will come up with something very good to say back to her. I think people just don't use their heads!!
Jul 13, 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. is so sad when people aren't able to put themselves in another's shoes...

Since she is a friend, I would consider just expressing to her the pain you feel about her response -- speaking from your heart. Let her know how much turmoil you have experienced, the times you have questioned how everything is being handled, the times Quinn has been in pain and you have felt helpless to do anything, the fear you have lived with, the agony of being the one holding her while procedures are performed, the absolute inability to know, as parents, if we are ever doing The Right Thing because there is no Right Thing -- just the best we can do given the circumstances we find ourselves in. Perhaps let her know that you suspect that she would not have expressed herself in that way if she had understood how much it would hurt you, that you know her intention was not to hurt you, but that you were, nonetheless, hurt.

I guess I always just feel like the best way to help others improve their compassion quotient is to model it. On the other hand, sometimes it is best for your own sanity to just let it slide and keep a friendship limited to chit chat. It can get to feel like a lot more responsibility than we need to take on to guide others to their own open heart...

Jul 13, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I am so so sorry that this happened. People don't get it. Of course you don't want this for Quinn. What parent would. And you are the best mommy in the world. Everyone of us wishes we could take our child's problems away. And if I could get rid of Cooper's reflux I would and we are working towards it. There is no way I would let him reflux just to live a "NORMAL" life. That isn't living either! Of course this hurt you. I think you should email her back and tell her how you feel and how what she said made you feel. The way to do that without attacking the other person is "When you (fill in the blank), I felt (_____), Because (______)" That way she can try to better understand what you are going through and why you do what you do. What is the worst that can happen? You guys stop talking? If so, she's not the kind of friend you need right now anyway. Big hugs. You are a wonderful parent. Don't every doubt that. You have helped me so much through our struggles with Cooper. I found strength through you in some of our darkest hours with this battle. When I had no one else to talk to or to trust, I knew you would answer my questions and help me deal with my fears. Thank you for that. Quinn's new pic is so sweet btw. Love ya girl!
Jul 13, 2008
Josh 12 yrs colic as a baby
Jenna 6 yrs dream baby
Jessica (6/11/07) Silent reflux dx at 3 weeks
Went off meds successfully at 3 mos
Went back on Prevacid 8 mg TID 1/3/08
Wow. I have to say the older I get the less advice I give. It sounds like this friend of yours does lack an understanding of all you and Quinn have been thru. She also lacks wisdom in knowing when to speak and when to keep silent. Maybe there's a reason you haven't seen her in so long and maybe you always kind of knew she wasn't going to be some one you could be close with. I'm sorry she was so insensitive. If I were you I would have been very hurt by it all. I was a NBICU nurse so I have seen parents and kids suffer thru and triumph. I have seen the struggles. Like everyone else said, this person just doens't have a clue. You are a wonderful mom and you have just done marvelously with Quinn. I don't think you should have any regrets whatsoever. Of course you wish life wasn't like this for Q, but you have made her life as fun and wondrous as possible and have given her abundant love. I would rather be a sick kid whose mom adored me than a healthy kid whose mom neglected me. Anyway, don't take what she says to heart. She's wrong about it all. Cristy
Jul 13, 2008
Tracey, mom to Katie diagnosed with GERD at 3 week.
I am so sorry your friends said that to you! Who would want their child to go through this! People don't understand the consequences of letting these kids eat "normally" and that the steps you have taken have been to help Quinn overcome obstacles and THRIVE! People with healthy kids can never understand how much these little ones suffer! We know that you are doing what is right for Quinn and we all share in each others joys, triumphs and heartaches over each others kids because we are in the same boat to one degree or another. Keep up the good work Sarah and don't get discouraged!! BTW: she is BEAUTIFUL and I agree about the previous modeling post! :)
Jul 13, 2008
Tracey, mom to Katie diagnosed with GERD at 3 week.
Oh, yeah. Send her the video of little Quinn sleeping and see if she still believes you should just let her be "normal"!
Jul 13, 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
um, so does she think that you just happened to convince a dr to place a G-tube? and that you convinced a dr to do a fundo? that they weren't medically necessary?

Does she work for an insurance company, by chance? >;)

Sorry Sara, I have been so lucky that my friends/family trust myself and Elyse's drs to know what's right. (they have been calling me "Dr Sharon" since I was a teenager! maybe being the only college/grad school graduate in the family has something to do with it!)

Jul 14, 2008
oh how horrible for you. I am so sorry your friend sent that email. Some times people people will say stuff when they dont know what is really going on. We have been there as well... as Joslyn is not any where close to the set backs your baby girl has. Please just know that we are here and we understand! Even if some other people dont
Jul 14, 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
Thanks guys for all your responses and suggestions on how to handle this situation. It has really helped me to respond to her. THANK YOU!!!!
Jul 15, 2008
Does this ever go away?
Sometimes people who don't completely understand and can be a little insensitive. I don't think she realized how hurtful her words might be, .......forgive her. You have to search her heart, pray and get all the information you need to make a good decision that would be best for your daughter. I have a daughter with reflex and I am terrified that the side effects of the surgery would make this worst. I am trying to weigh the pros and cons to see what is reasonable. Feeding after having the fundoplication surgery, could hurt her more. In my opinion, I think I would rather my daughter deal with the reflux and to be able to throw up. But every baby is different, what might work for you might not for me and vice versa. I know it is not easy. Trust God for the comfort you and your daughter need to go through this. Do what you think is right for you and not just what other people think you should do. She is a beautiful child. I send my prayers to God for you both.
Check with your
doctor first!