Posted By Posting
Dec 03, 2008
mollybeth
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
Cooper is not well
Things are still bad. We got the testing back this morning; no rotovirus, no infection/ bacteria. This was good and bad news. We are very thankful that he doesn't have some gosh awful infection, but have no idea what is causing the diarrhea. It has been a full 2 weeks now since it began and it has only gotten worse. But, for the most part he doesn't act sick. He is very cranky b/c he is so hungry and his belly and hiney hurt. They think he has either developed a new allergy or he has a kink or malrotation in his intestine. We are seeing the GI tomorrow. Today they wanted an u/s of his belly, but or local hospital is crap and didn't think it would show anything. SO they took a strait xray and couldn't see anything and wanted to do a ct. I told them I did not feel comfortable doing that here b/c they sedate him and he struggles to keep his o2 sats up with that, an they are not well enough equipped here. They said since we are seeing the GI tomorrow, it would be fine. The pedi and the gi spoke today and they want him off breastmilk completely and on to elecare for at least 3 days and see what happens. I am devastated. I am crying as I type. I worked so hard to nurse him and I can't imagine loosing that. I don't want to quit yet. i am not ready and he is not ready. I will pump to try and keep my supply up and If there is no improvement with the formula, I will switch back to nursing. I am heart broken to take it away from him. He loves it and so to I. I never imagined it would be this important to me, but it is. I am sure some of you don't understand, I never would have before. I am just really struggling. He may be my only baby. This really hurts. I don't know what else to say. It has been a really rough day!
Dec 03, 2008
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Big Hugs! It is completely o.k. to cry after the day you have had. I totally feel for you having to quit breastfeeding for a few days and you shouldn't feel bad about not wanting to stop. It is an awesome bond between mother and baby and everyone should be able to stop on their terms. That being said I think you are doing the right thing and continue to pump while you are giving the Elecare. Does he take a bottle for you at all? It might be a rough transition and you may need someone else to help with feeding if he has been nursing exlcusively for a while. Hang in there it will get better. I hope the GI is more of a help tomorrow. Please keep us posted on Cooper. You both will be in our thoughts and prayers.
Dec 03, 2008
amber f
I totally understand. BFing is hard to give up esp. when it is taken away. I really hope they can help tomorrow. Keep pumping, hopefully you can go back. You have done such a great job this far and you even toughed it out through the elimination diet. I'm soooo sorry. (((HUGS)))
Dec 03, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I am so sorry that Cooper is not well. Do they think there is any connection to the testing he had done?

It helps to cry and type it out doesn't it? It is the most painful thing to know that your child is not well.

I hope they will help you tomorrow.

Dec 03, 2008
mollybeth
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
He cried for about 45min and just now is taking the first bottle from dh. He will not take it from me. He pushed it away a screamed. Dh is about to have ot go to work. Tonight will be rough. And, my sister may be in labor, and I was supposed to be in the delivery room. This has been a really sh*tty day.Sorry, but it has. I think there is certainly a correlation w/ the egd. I really want to know what is wrong with my baby! Oh yeah, and we were having his bday party this weekend. Who knows now.
Dec 03, 2008
bib3mama
I have 3 boys, youngest has gerd, 18 months of no sleep. Prevacid 2x/7.5 mg thinking of switching to prilosec.
I'm so sorry and I cry for you. This must be so hard on you. I will mention Cooper in our rosary today. I would be struggling too. I can't imagine that not nursing will improve things. I've never heard or read of such a thing but it sounds like the drs are seeking answers. Can you get a different dr?
Dec 03, 2008
rissaroo
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!
((((hugs)))) Oh, Mollybeth! I am so sorry it's so tough. Hang in there, though...this may well just be a bump in the road, and you may be back to breastfeeding in a few days! There are all sorts of things that can cause diarrhea, and most of them wouldn't take away your ability to breast feed. Keep pumping, and freeze that milk! I bet you'll need it later. Another thought is probiotics, maybe ask the GI about that tomorrow. Maybe the antibiotic he was on for the pneumonia knocked out his good bacteria and he just needs to get them replaced. He may very well be right back to normal in no time, so try not to feel like this is it for the nursing...at least until you know a little more. I know it's hard! With the bottle...you might need to try a cup with him instead, Rachel would not take a bottle until she was over a year old, so we went and got her an Avent sippy cup with the soft spout, and she took that better (she was just around 5 months old and i had to leave her for something...can't remember what...for more than a few hours, so we had to try *something*!). It might be that he'll take a cup easier than a bottle when you're the one feeding him, and hopefully he'll be back to bf'ing in a few days. The good news is, you have ruled out in the last few weeks most of the major things that could be wrong...so the chances are good he's just got some sort of minor virus, or an imbalance in his GI tract due to all the tests followed by the abx, not to mention the reflux flare up with med changes before the tests...oh, man. I'm so sorry you're going through this and i know it must feel like the last straw in a month of stresses, but you'll get through this and it will be OK. Is there anyone at all who could watch Cooper tonight? I hope you get to go be with your sister, or that it's a false alarm and you'll get to be there later. If you can call someone, do...he'll be OK and will be sleeping most of the time anyway, and one difficult night will be OK in the grand scheme of things. Email me....I'll give you a call if you want to talk. I'm praying for you!
Dec 03, 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.
((HUGS)) -- I cried along with you reading that. I know exactly what you mean...and it tears me up inside just thinking about the fear and loss that goes along with unexpected weaning. I'll be praying that you can keep up your supply and resume breastfeeding ASAP.

You may also want to check in at the La Leche League forum in the Relactation forum -- it is sometime possible to re-lactate if your supply disappears, and it might help you to at least explore that option if it comes to that. Please keep us posted -- I'll be thinking about you and Cooper both.

Dec 03, 2008
mely
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
I am sooo sorry. I totally understand why you are sooo sad about weaning abruptly like that. I could only nurse mine until she was 4 months old because she was such a poor nurser due to the acid reflux- my milk dried up- and she was soo unhappy. I pray they find an answer soon. God Bless.
Dec 03, 2008
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
I am so sorry to hear all that you and Cooper are going through. I will keep you in my prayers. Hopefully, you will be able to nurse again and they will be able to figure out what is going on with him. The timing so close to his birthday does stink. Big hugs to you both!
Dec 03, 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!
I know you're emotional right now but first I want to say...I said Morgan would be my only one and look at me. :)

I know how you feel about nursing. I was able to go 8mos with Mags and honestly-after I stopped, I wished I had stopped sooner. I know it's hard right now but I believe that these reflux babies just need the consistency of the formula. I feel that unless a mom can keep up the blandest diet there is and be very consistent with what she eats, it's just hard on their tummies. I'm not saying that bfeeding is bad for them, but I believe that in many cases formula is better for them. It's a sticky situation. Breastfeeding is so much more to a mom than nutrition and I know that's the parts that you're gonna miss the most. Hugs to you!

Do you think it's possible he's having some kind of reaction from the sedation? Could that even be possible lasting this long?

Dec 03, 2008
jedd'smommy
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: www.caringbridge.org/visit/jedd
OH Mollybeth, I am sooo sorry sweetie!!!!! (((HUGS))) I hope the GI can give you some answers tomorrow. Make sure they check him real well for dehydration because all that pooing and then the not taking bottles will just do a number on his little system.
Dec 04, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
I am so sorry that you are going through this. I am still nursing my 16 month old, and I understand the amazing connection you feel and how heartbreaking it must feel.They love their milky treats !!! You are trying everything possible to help Cooper be comfortable and to figure out whats going on.. He's feeling the love flowing from you, no matter what! I hope that the GI can help shed some light on what's going on with Cooper. I'll be thinking of you tonight and hope that you update us after your appointment. Good work, mama!
Dec 04, 2008
mollybeth
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
Oh ladies. Thank you all so so much. I am sitting here getting one last pumping in before bed and was reading through all your kind thoughts. It means so much. I think once I sit down w/ the GI and tell him what i am eating and how much I am eliminating, perhaps he will think it is ok. I am willing to go back to the way it was the first few weeks if I have to. I was so sad tonight getting Coop to bed w/o nursing. It took everything in me not to do it. I am praying that I can pick the nursing back up soon. I haven't added anything new, so I really don't know what it could be. I am ready to talk to the GI and see what he thinks. Cooper ended up taking about 7oz today as well as about 8oz of pedialyte, so that was decent. He took the bottle really well in the car and we have 6 hrs in the car tomorrow (to the gi and back) so I figure we will get some good feedings in. He has had 2 doses of kaopectate and still had lots of diapers, 8 I believe. Anyhow, he is sleeping now and I have got a big day tomorrow, bright and early, so I will be off to bed now. I love you guys!!!
Dec 04, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
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!
Was Cooper tested for c.diff? :( I hope that the GI will be able to give you some concrete answers and that it doesn't involve you having to quit breastfeeding. I do remember that kind of anguish... and there is no other word than anguish to describe how I felt when they told me I could not bfd Melina anymore. I hope that will not be the case with you and Cooper but if it is please know that you did such a WONDERFUL job!!! I am really feeling for you right now. E-mail me or call if you need anything! Please let us know what the GI says. ((HUGS))
Dec 04, 2008
bib3mama
I have 3 boys, youngest has gerd, 18 months of no sleep. Prevacid 2x/7.5 mg thinking of switching to prilosec.
I thought of this last night- When my 2nd was little he had bad diarrhea, eventually with blood in his diapers. With much searching I came into contact with the oldest La Leche League leader in the NW.(a 30 yr veteran) She told me that his brushboard of his intestines was severely irritated and needed the enzyme lactase to digest milk- breast or formula. Maybe that could help Cooper. It helped my Daniel. It took a couple days but it worked. I gave him lactase with every feed. There is something called Lactaid fast act, vanilla twist flavor. It tastes good and is easy to crunch up. You might try a 1/4 tablet. Let us know how you are doing. You're in my prayers.
Dec 04, 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.
omg! i am so sorry!! off bm? that hurts me and he is not my baby!!

i understand you are upset! it is an amazing experience and to be told to stop...... i am in tears now!

please do pump and hopefully you can resume in a few days.

get better soon little man

Check with your
doctor first!