Posted By Posting
Jul 13, 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
Photobucket
Feels like the old days *sigh*
I posted a few days ago that Elyse was drinking an average of 9 oz of formula while we were on vacation, but drinking a little water and juice besides that. Well, yesterday she drank 8 oz of formula the whole day, refused all water and juice. We tried open cups, different straws, different sippies, popsicles, to no avail. At one point I was saying dirty words because I just want my baby to act like a normal kid!!!! Today so far is turning out to be the same. I can't see anything in her mouth but I can feel two top teeth coming in, so that has to be the cause. It just sucks to throw away whole bottles of million dollar formula, and to be living in 100 degree weather and your kid won't even eat a popsicle to get a little hydration. What kid won't eat a popsicle???!!
Jul 13, 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
I am so sorry. This is concerning b/c in this heat, they can dehydrate so fast. Have you called the dr? i probably would if I were you. I hope today turns around and she does better. Big hugs!
Jul 13, 2008
daniejo
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.
That stinks!! I know that with Nate, he STILL won't eat or drink much at all when getting teeth. He is getting another bottom one now...he only drank about 10oz yesterday...that is NOT like him...he is my milk-a-holic. Hopefully after her teeth pop thru, she will drink more. BTW-Nate will NOT eat a popsicle...I too think that is crazy :)
Jul 13, 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
Photobucket
coopers mom....nope, I did not call the pedi. When I used to in the past I always got the same answer...oral IV (syringe 5mls every 10-15 minutes). I did not do this yet because she was still peeing and crying tears. We stayed inside in the AC all day because of the lack of drinking, and kept wetting her mouth at least with all the attempts to get fluids in her (which essentially, IS an oral IV anyway) :) The pedi says that if you can at least get the mucous membranes of the mouth wet, it is good enough for a little while to get them hydrated enough. Today she has drank 11 ounces and we will probably be able to get in another 3 at bedtime :)
Jul 13, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
I am so sorry to hear that Elyse is not drinking for you. I too remember those days :( Lauren is almost straight sippy these days and while I feel like I waste a lot of milk because it sits too long, I think she really likes the freedom of having it when she wants it...Does E hold her own bottle/sippy yet? I know gas is an arm and a leg right now, but Lauren seems to drink best in the car or the stroller. I fill a sippy before we leave to run an errand and usually it's empty by the time we arrive (10-15 minutes). Just a thought.

I also love this picture of her munching on her peach! So cute and she looks so proud of herself!

Jul 13, 2008
mom2coy
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.
I know the feeling. Coy too is a bottle refuser while teething. He has 6 and the eye teeth are popping thru. The only thing that he loves is I freeze pear juice and put it in the safe feeder. Makes a mess but he really enjoys it.
Jul 13, 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
Photobucket
jennifer, she *can* hold her own sippie/bottle but A) only when supervised (like on my lap or laying in her stroller) and B)if she doesn't want to drink she just throws it or holds it upside down and lets it empty slowly, making a huge mess (she still can only drink from sippies with no valve, which means they leak). When I say the "old days" I guess I mean the old days of only a couple weeks ago. We go thru this all the time still, so when we have a week long reprieve of her actually wanting to drink it feels like a vacation from normal life. I am hoping that when we get to try milk she will like it. Right now I worry about the lack of fat in her diet since she doesn't drink much formula. Coys mom....I just looked at your blog, he has such long curly hair, how cute! Elyse usually throws her safe feeder. :( I may try your idea anyway.
Jul 13, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
Oh yes, Lauren throws her cup when she's not interested as well! I have become a pro at driving and fishing my arm into the backseat floor board for it! We started out with the "take-n-toss" cups with no valve. The babysitter switched her to the Gerber soft spot and she did well with them so I haven't messed with it...Sometimes she will throw it hard enough to knock the valve out tho! OR my dh forgot to put the valve in a few days ago, I couldn't figure out why she was dribbling so much milk!

We also had to switch over the milk VERY gradually to get her to accept it. And if she's having a low intake day we give her pediasure instead of milk because it's so calorie dense and it has all the vitamins/minerals she needs.

I hope she gets those teeth so that you can get a small break! Lauren also reduces her intake when she's teething...

Jul 13, 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
Photobucket
So far the takentoss are the only ones she can use! She can drink out of a regular straw so I bought her some straw cups but when I tried drinking out of it to see if it was hard, I found that you have to bite the straw then suck to get anything out! I don't know that i want to teach her to bite straws. I decided that I am just going to treat her low intake fluid days like I do her low food intake (as long as it does not get too out of hand). Offer it, then ignore and don't make a big deal if she won't take it! With her food I put it on the tray and if she won't eat it I don't worry about it. Sometimes this means she eats only a tablespoon of food, but I want her to accept a variety of food instead of offering cheerios every meal!
Jul 13, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
I haven't tried the straw cups yet, even though I know lots of people here really like them.

I also have never tried to give Lauren a popsicle to eat...bad mommy...I never buy them. Now ice cream on the other hand...she's had lots of that :) because that's what mommy wants to eat!

Sharon, I also sent you an email when you get a chance.

Jul 14, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Same experience with the sippy cups with straws and she hates them. She LOVES drinking out of straws with us so thought she would love her own cup but now she won't try either a straw from us or her sippy straw cup because she got frustrated with the sippy straw cup. (sigh)
Jul 14, 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
Photobucket
Tracey, you should try the take n toss sippy, it is the only one Elyse can use and she is 13 mos old. I just put water in it or a tiny bit of juice with a lot of water because there is no valve and if she turns it upside down it WILL drip out. She also likes to fling it around, spraying everyone and everything!!
Jul 14, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Oh man, I'm sorry she's not drinking for you again. :( That really, really doesn't seem like a lot of formula, even if she is eating. Hydration would worry me too, but if she's drinking water and juice, my concern would be her nutrition. She likes yogurt, right? I freeze the yogurt tubes and give them to Rory. She will usually take a couple licks. Another thought, too, is you could experiment with temperature. Do you give her bottles/cups cold? Rory LOVES freezing cold water. I usually put ice cubes in her cup with water. She won't drink cold formula though. If it's so hot, she might like it really cold. I wish I had more advice for you. The only thing keeping me sane is the fact that Rory now LOVES her bottle, so I don't worry too much about nutrition. I'm sorry you're dealing with this. If it goes much longer, I would take her to be seen, because she could potentially lose weight. Teething is most likely the cause, so hopefully she'll pop them through soon. HUGS.
Jul 15, 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
That is good that you already new what to do. I KWYM when you say you know what the dr will say! Like you said on another post, I think it was Sarahs, about being called a "dr" yourself. I was gonna tell you a cup we've had luck w/. The nuk sippy's are the only ones Cooper can take. They are a trainer cup and has been a lifesaver, I was so glad we found it. I gave him an Avent today and he choked so bad on it I had to take it away. Were sticking w/ Nuk. I know this doesn't matter if she doesn't want a drink though;) Hope she's doing better!
Jul 15, 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
Photobucket
michelle, I gave her a frozen gogurt (yogurt tube) 2 weeks ago and she threw up all over me :( She loved it until that point! mollybeth, we had a nuk cup that I never got to try because I MELTED IT a couple months ago! I will have to go get another one! (I forgot and left the burner on way low after cooking dinner one night and set her plastic tub containing all her dishes right on it, noticing only after it had melted the tub and half her dishes!!!!!)
Jul 15, 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
That stinks! Especially b/c it is an expensive cup. $7 is alot to pay but it has been well worth it. I cant tell you how great it has been. he uses it to soothe when he is upset or sleepy for a nap. This has been just great. It gives us a longer stretch between bf now, which was so needed. I can actually leave him for more than an hour in a half now. Plus he never chokes ob it, which is the most important thing for me. I hope she likes it.
Check with your
doctor first!