Welcome everyone!!

[Jennie]

I hope that this is a small group - no offence to anyone but we moms of preemies and kids with special needs don't like to see others going through the ups & downs associated with our kids.

Check in if you are here!

Jennie

[KristenG]

I am here!

Miss Olivia is almost 15 months now! Born @ 35 weeks, she is doing really well! She has an official asthma diagnosis, and wheezes consistently throughout the day when doing any activity. :( We have her on a home nebulizer and she gets 2 treatments a day right now. She is not walking yet, and doesn't even want to stand up holding on to furniture anymore. I think she has almost regressed over the past two weeks in that sense. Other than that, she is PERFECT! :) :) She is soooo smart, and such a cuddler.

Here is a recent picture!
http://im1.shutterfly.com/procserv/47b4df35b3127cce86defbd2b2070000002611 (javascript:openSlideWin(1, '67b0de21b3daccc3e4d9', 13);)

[Karri]

I am here!!!
Norah and Elliott are 11 weeks old, 2 weeks corrected, and are doing great.

[Shanna]

I'm not sure that my girls are actually preemies, although their ped calls them preemies. They were born at 36w1d and were 3lb14oz and 4lb10oz at birth. They didn't have any real problems other than size when they were born. We spent 2 weeks in the NICU growing. Right now, they are 9lb8oz and 8lb14oz.

[kalynnsmom]

Can I join you?

My daughter Kalynn, has Neurofibromatosis Type 1. It's a genetic disorder affecting the nervous system.

She hasn't had any problems, so far. She seemed behind a little on her gross motor skills (common). Basically, it's a wait and see which I HATE. She could get fibromas (little tumors all over her skin), have a Learning disablitiy, scoliosis, and other things. I am TERRIFIED. I hate not knowing what's going to happen. She could have a mild case of it, or she could have bad case of it. There is no way to tell.

She has had a plexiform fibroma removed from her tongue. They consist of "branches" and can grow back, and I think it is.

I also wanted to add that I HATE Bill's insurance. We switched to a deductible. That's all fine and good if you only see the Dr on a occasion, but Kalynn MUST see several specialists every couple of months. It's a $1000 deductible and she needs to have an MRI. But can't, because we can't afford the $1200 out of pocket! :angry:

[Mamey]

:bighug: to all of you!

Alyssa is 3.5 years old, and is doing wonderfully. You'd never know how much she went through to look at her now. She was born at 34.5 weeks with something called VACTREL syndrome. Basically, it stands for all the things that can be affected.
V~Vertebrae (Alyssa has two funny shaped vertebrae and extra ribs)
A~Anal (no problems there)
C~Cardiac. Alyssa had two holes in her heart (ASD,VSD)
T~Trachea (windpipe)(connected to esophagus and lungs rather than dir path to lungs)
R~Renal (no problems with kidneys, but Alyssa did have missing tissue at entrance to her vagina, protecting ureter. Shouldn't cause problems.
E~Esophagus (Alyssa's was connected to her trachea instead of her stomach)
L~Limbs (Alyssa is not affected)

Thankfully, Alyssa's is actually a mild case. Basically, her insides were disconnected. Esophagus wasn't connected to tummy, connected back to trachea instead. Tummy not connected to intestines, and intestines all messed up. Organs were in the wrong places. Holes in her heart. So she had surgery at about 18 hours old to correct most of that. At that time, they placed a G-tube, which is how she was fed for a good portion of her first 9 months. She spent 6 weeks in NICU learning how to eat and digest (intestines never worked in utero) and came home very healthy. She did great; crawled on time, sat on time. She was in speech and physical therapy for only a few months. When she was 9 months old, she had open heart surgery to correct the VSD (hole in the ventricle wall) The ASD and PDA had finally closed on their own. After heart surgery, she was a new baby. She quickly got the hang of eating again, and was off tube feeding almost immediately. At 12 months, she was walking and saying over 50 words! At 13.5 months she finally got her first tooth! From about 15 months on, anytime she got a cold, she was on nebulizer treatments, and was officially diagnosed with Asthma at age 2.

In April of 2002, she had corrective eye surgery for lazy eyes. She wore glasses for 6 months before, and about 6 months after. Since then, she's been without and doing great. Most likely, she won't have to have any other surgeries. The big stuff is all fixed! She's my little miracle!!!

Here's a pic of Alyssa and my neice Mikayla; they are 5 weeks apart. This was summer 2003. Alyssa is on the right. :) http://im1.shutterfly.com/procserv/47b3d737b3127cce8ec507c893cb0000001610

Amy

[Eleanor]

I'm here too...Isabelle was born at 34 1/2 weeks due to my pre-eclampsia which turned into eclampsia. Other than being in the NICU for 3 weeks, she's done great, and was pretty much caught up to her actual age group by the time she was about 9 months. (She's now 27 months, and big for her age!!). Hopefully I won't have to be posting about #2 here...but suspect I may...I'm 31 1/2 weeks, and have started to have signs of pre-eclampsia again. Hopefully this one will make it to 36 weeks, though... (also had a trisomy scare with this one...but things look ok from that standpoint, baby is extremely vigorous and doing well :) )

[Hilary]

:wavey: I don't post in here a lot, but I do lurk in here at UB. I am Hilary. Madelynn was born at 36w4d and was fine, but she got RSV when she was a month old and now has asthma because of it. We're hoping she'll outgrow it, but this winter was rough on her with going to daycare.

[Dawn]

Hi! :wavey: I would post/lurk in this forum over at UB as well and just wanted to write some details about Alexia. I figure it won't hurt any in case anyone needs any info. or has any questions at all, as I know it can be helpful.

Alexia was born 1 wk. late and weighed only 4 lbs. 15 oz. Although she was not a preemie, she did have some problems.

I delivered her via emergency C-section and she was in NICU for about 9 days. She was stressed and had miconium aspiration.

She also had hip dysplasia in both her hips, resulting in a body harness 24/7 for 4 mos. As some time went on, Alexia was diagnosed with hypotonia (weak muscle tone in her legs and arms), as well as gross motor skills delay, and sensory dysfunction. She has undergone TONS of therapy (physical and occupational) thru Early Intervention and the Children's Specialized hospital.

She's doing much better and they continue to evaluate her until she's 3 yrs. old. From what I can tell, she still has some sensory issues, but I will address those again when they do a re-evaluation on her in March.

[AmyP]

I don't have kids, but I come in here from time to time. My friends Chris and Amanda have a son, Nathaniel James, born 8/8/02 at 39w6d. He has Hunter's Syndrome. I'm not completely clear on what it is or what it does, but he is tube fed and on oxygen. He finally came home just before Christmas (over a year old!) and is doing great. He is already requiring a lower amount of oxygen than recommended by the hospital.

I need to call them again sometime soon and go see him and see how he's doing.

[Tam]

Of course I'm here. :)
I'm glad to see some of my friends over here too!

My son Carson was born via emergency c-section at 25 weeks, weighing a mere 1lb. 14oz. I was diagnosed with an incompetent cervix. He suffered severe lung problems, and we were told on two seperate occasions that he would not live another day. We were even told to call our preacher to do final procedures and given the option to "pull the plug" to end his suffering.

Carson is now 2½ years old, healthy as a bee and only suffers from asthma, though he's never had an attack. He's mentally on target, maybe a little ahead, yet physically a little smaller than the others (quite understandable). Carson has BPD (bronchiopulmonary disease), which means he gets sicker than normal when he encounters a cold. We've received RSV shots both years, and he's ended up with the virus, but never hospitalized.

I consider myself very lucky to have been blessed with a miracle. We're now anxiously (yet nervously) trying to make Carson into a big brother. I hope to start my pregnancy journal soon (and that I can actually go past the 6-month mark this time!).

[Jennie]

TAM!!!!!!!!!!!! :cheerleader:

[Tam]

:lol: Jennie - you didn't think I could miss out on all the fun, eh?

Let's hope we keep this group to a minimum!

[sru]

Hi all!:wavey:

I am here also--just not much. Abby was born 32 weeks(9/7/01) weighing 3lbs 8oz due to what they thought was eclampsia but we now know was caused from me having nephritis. I did not know at the time that I had nephritis. Abby remained in the NICU for 31 very rough days. She had several complications and a NEC scare but is now a thriving 2.5 year old. She is still thin for her age but tall. Otherwise she is doing great. She knows her alphabet and can count to 20! We are currently working on potty training.

Due to the severity of my nephritis it is recommended I not have anymore children.

Here is a recent pic
http://www.shutterfly.com/jsp/proceserv.jsp?rostate=67b0de219390d3bb6588&co=-1&js=1076819798310&ps=1&rs=6

[LISA]

Hey everyone :wavey: My name is Lisa, both my girls were born premature, Cass was born at 34 1/2 and Paige at 34 wks..right on the dot .. I have a bicornate uterus or heartshape, which kind of means I have a wall dividing my uterus so therefore the baby runs out of room and thinks its "done" this is how it was explained to me, Cass was in the hospital for a week but Paige it was 2 1/2 weeks, it almost killed me to walk out without her, I thought because she was born at 5 lbs that she would be "safe" and not have to stay in NICU but I was wrong, she needed the tube feedings etc, set off the alarms when she forgot to breath god it was a nightmare that I don't ever want to go through again which I was told would if we do decide to have another, after weighing everything we decided that we can't do it again and dh is going to have a vasectomy..it sucks.


here is a pic of Paige a couple day's before being let out of the hospital..my little peanut :)
http://im1.shutterfly.com/procserv/47b4dc36b3127cceb8e9329f4ebe0000001610

and a more recent one
http://im1.shutterfly.com/procserv/47b4dc29b3127cceb877d737c8fd0000001610


So far the only delay we are finding is speech, but it's mild and she is in therapy for it right now and improving tons each day :)

[Dawn]

Lisa ~ Just wanted to tell you that my sister has a bicornate uterus as well. Her son was born 5 wks. early I believe, which I know is common to give birth early when you have a b.u. Her son will be 3 the end of April. :) I just wanted to tell you because when I read your story, you don't hear of much other pple with a b.u. Your daughter is adorable, btw. :)

[LISA]

Thanks Dawn :) no you don't hear from many people with B U . :wavey:

[Cyndifsu]

Hey to all. My little boy Jackson was born 36 wks 4 d and has had congestion since he was born (he will be 4 mths on 3/7/04). About two weeks ago, he was diagnosed with bronchiolitis and had to be hospitalized for 2 days for fever, wheezing, coughing, volmitting, dehydration. He is doing better now but is on a nebulizer every six hours and has to take a steroid once a day. He will be off of the breathing treatments in about two weeks but will continue with the steroid once a day until the end of spring. He will then go back on the steroid next fall, winter, spring.

[May2003t&d]

Hi everyone :)

My son Antonio was born on 2/20/04 at 28 weeks weighting 1lb 8.8oz. They delievered me via c-section because of Pre-eclampsia, low fluid and a very small placenta that was esentially breaking down. My little man is still currently in the NICU unit and is doing wonderfully. He is now 3 lbs 2.1 oz and starts bottle feedings tonight!

I'm looking forward to getting to know you all :)

[Shanna]

I'm so glad to hear that he is doing so well!!

[KimInCanada]

My little miracle Troy was born 3mths early, weighing in at a wopping 2lbs 5oz! I had to leave him in the hospital NICU for 8 long weeks and it nearly killed me every day when I had to leave him. It was so heartbreaking, and especially for the first 4 wks when they couldn't guarentee me that our son was going to live.
Anyway, he's doing wonderful. He's a little behind in some things, more so his speech. He sees a speech therapist and that really helps. Troy is also in day care full time and that has been awesome with his learing from other kids... even the bad things! LOL


http://img46.photobucket.com/albums/v141/KimInCanada/4wksold5frame.jpg


http://img46.photobucket.com/albums/v141/KimInCanada/troy2.jpg

http://img46.photobucket.com/albums/v141/KimInCanada/aftercut.jpg

[AmyJ]

:wavey: My name is Amy and my son, Nathaniel James was born at 34w6d. Due to my pre-eclampsia. He was delievered by emergency c-section. He was 5 lbs. 7oz. and perfectly healthy. Our only issues were his difficulty sucking, so he never did get the hang of nursing and I pumped for 3 months instead. He came home from the hospital with me and never had to be in the NICU or special care nursery.

He is now 8 and in 2nd grade. He is VERY tall for his age, but thin. Congintively, he is ahead of alot of his peers. He is reading at the mid 5th grade level. As a toddler he did have a speech delay, but it was very mild and he overcame it before kdg. His only issue now is fine motor skills. He still has difficulty with writing, cutting and things like that. We work on daily activities to work on that.

It is inspirational to hear so many of your stories and how far your miracles have come!!

[Subwife]

I'm Nichole. My son, Dade is almost 2 and a half. He has a speech delay, he is up to like 10 words now I think maybe 15 but he doesn't use them often. He is also get OT and visits from the special ed teacher though EI.

Nichole

[SophiasMommy]

HI all!

I'm April, my dd is Sophia! She was born at 25 wks(24 according to the hospital!). She spent 5 months 2 days in the hospital. I was in the hospital on strict bedrest for 2 weeks prior. We found out I had an incompetent cervix and then 3 days before I delivered(vaginally) my bag of waters got a tear!

Sophia had a Grade 3 IVH and hydrocephalus, but it resolved itself in a month..no surgery thank God! She also had stage 3 ROP, CLD, BPD, and subglotic stenosis(narrow airway). She came home on 1/8L of O2 and an NG tube. She is currently being weaned off the O2..only needs it when sleeping, eating or in the car(because she falls asleep). We have been 2 wks without the NG tube. She decided for us that she was ready to have it out when she pulled it out 2 times in 2hrs! :)

She will be 7months old on Friday(Apr 30) adjusted 3.5 Months...So far she is on target for her adjusted age! She is even doing things that babies her adjusted age aren't doing!! I'm so proud!

I can't wait to get to know all of you!!!