Posted By Posting
Jul 12, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
Mila Update
Why doesn't my child sleep? I mean... once I get her TO sleep, she'll sleep but she's been up till midnight many nights and then she wakes up as soon as I come back from walking the dog. ( Don't get me started on the damn dog )

We are trying to increase M's calories from 750 to 800 and we manage that * most * days... We've gone up 1 ml every few nights to get her up to 45 mls X 8ish hours.,p.,p. We are having a SERIOUS ISSUE with the tape on her face and I do NOT KNOW WHAT TO DO. She has a patch on the back of her neck that looks like excema. Then it cropped up under the tape on her cheek. And under her nose. And now she's got it on her PALM. A nurse friend of mine told me we'll have to use a differant kind of tape - thick white tape. No more clear stuff. I cannot WAIT till M gets her gtube.

Oh, and I'm availabe to you all 24 / 7 now with the addition of hubby's new toy : blackberries! If anyone needs anything from me ( or just to talk ) email me at spawnspoet001@hotmail.com. It goes directly to my phone.

Oh, and at her last visit M was 20 lbs 13 oz and 82 cm tall.

Jul 12, 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
Wish I could give you advice in the sleep department, but we're in the same boat *yawn*. That stinks about the tape...I can't imagine most people's skin can take medical tape day in and day out for any length of time without getting irritated. I'm sure you've done this, but have you asked on the p-2-p forum if anyone has any other ideas (maybe a different brand of clear tape) that may help? She sounds like she's thriving - a testament to your excellent mommy skills :-)
Jul 12, 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
YAY for weight gain. I soo understand how you can't wait unitl the G gets put in!!!!! HUGS.....
Jul 12, 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.
Ugh, I know how awful that late night bed time thing is. Lorenzo almost never goes to sleep before 10pm (often later) and wakes up as soon as there is light in the sky.

Having just spent several hours trying to get the adhesive out of Lorenzo's hair and off of his skin (unsuccessfully, I might add), leaving him with red rashy patches, I cannot imagine having to deal with tape on his skin all the time. I feel for you, and Mila... I hope you can find a less irritating alternative.

Jul 12, 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
Elyse and I always do better with the paper medical tape, it causes less irritation. I know we used it when she had her pH probe and it worked fine for that tube....when she had her ng tube for a long time though I think we had to use that other stuff.....duoderm? tachyderm?<------that last one sounds like a dinosaur! can't remember the name (oh how glorious that it has been long enough to not remember....can't wait until you are far enough out to not worry about stuff like this....)
Jul 12, 2008
mdbarbagallo
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.... :(
Is it latex tape? If so, can you try a different kind? Does she react similarly to band-aids?

As for the sleep, I am useless in that department. I have been up at 5 a.m. every night this week with lots of wake-ups in between. Damn kid. Good thing he is freaking adorable.

Mila is getting tall!!
Jul 12, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Hi all! I don't have any advice what so ever about the tape but Katie does have blackout curtains and a fan on the floor that provides white noise because she is such a light sleeper. We have headphones to watch TV and whisper when we talk 3 rooms away. Once we got the curtains she actually started sleeping and the fan helps because I swear she can hear footsteps on carpet and it wakes her up.
Jul 12, 2008
mommyto2
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.
Photobucket
Glad to hear she is gaining weight! Hope you get her gtube soon!!
Jul 12, 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
We play an ocean waves CD as "white noise", it works really well!
Jul 12, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
eheheh tachyderm... very very close. Its tegaderm. We use a barrier wipe underneath ( Cavilon no sting barrier ), then a layer of duoderm, and then a layer of tegaderm. Papertape isn't gonna cut it unfortunetly.

yawwwwwwwwwn is it wrong for me to want to make ( and drink ) a SECOND pot of coffee?

Jul 12, 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
YOu're right paper tape does nothing for us either..LOL It's just NOT sticky enough. It kept falling off....

Sorry she's not sleeping...HUGS I hope you can grab a nap tomorrow to help.
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 don't know when Cooper will sleep either. I have no expectations at this point. Sorry about the tape. I am super sensitive to adhesives so I know how "fun" that can be. SO are you totally addicted to the berry?
Check with your
doctor first!