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NICU Parents
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Date:2011-10-16 13:52

Hi - I'm new. :)

My first child, a little girl named Evelynn (Evey, pronounced ee-vee) was born at 32 weeks, 3 days on 9/10/11 at 3 lbs, 3 oz, after I got severe pre-eclampsia. She is beginning her 6th week of life (and in NICU) today, and will be 38 weeks adjusted on Wednesday.

A lot of times, I feel kind of alone in what we're going through just because it's been hard to meet other moms/parents who have had a child at a similar gestation as ours to talk to (I've met moms of micropreemies and moms who had preemies born between 34-36 weeks who got sent home after just a few days in NICU.) So I'm sure this community will be a great asset for me. :)

My husband and I are very, very positive minded people, our faith is really important to us, and our family is incredible so our NICU journey has not been plagued with much fear, depression, or anything of the sort, for which we are extremely grateful. It's really been fairly uneventful really. She's simply "acted her age" as they say. We've endured no major complications. She's simply been growing and growing! She's over 5lbs now.

However, we ran into some issues when it came to feeding. The short of it (and maybe someone in here has experienced something similar?) is that her oral skills were fine, but after a swallow study, speech pathology found that something funky is going on anatomically in her throat region ... so much anatomy vocabulary was thrown around that I can't remember much. I know the the speech pathologist thinks that the back of the throat, which is supposed to be smooth, is not (she feels like there may be some kind of webbing, she isn't sure) and that the wall separating the esophagus and trachea is moving out instead of up to open the esophagus. So essentially, though Evey is really trying her best to eat, she has been having a bad time because eventually she chokes and then has an "episode" with a major drop in O2 saturation.

That being said, the doctors and speech pathologists have decided that they are going to cease trying to feed her orally, mainly because she is beginning to have a negative relationship with oral feedings (she shows a LOT of stress signs when we try to feed her) and instead, she'll be sent home on an NG tube and instructions on how to provide positive oral stimulation during feedings (mainly making sure she has her pacifier when she eats, stroking her cheeks, holding her on her side like we would if she was eating from a bottle.)

So, it was tentatively planned that Evey would go home this week. Well, I guess this morning she had two "episodes" after not having had any since the 2nd of the month! (By episodes I just mean apnea/brachycardia) and NOT while eating. The nurse says she may have just been trying to clear her throat. As it is, sometimes her respirations go a bit high and speech thinks that's due to her trying to swallow saliva or something. (Part of what happens is that, if she doesn't outright choke, she just swallows so much that once she starts to breathe she is out of breath and it's like she's trying to run a marathon.)

Anyway, has anyone in this community had any similar experiences? The hardest part is not being able to really learn more about what is going on because I don't even know what to Google, haha. (Not that Googling is necessarily a good thing, right now, in terms of trying to stay positive.) Once she's home she is going to go see an ear/nose/throat specialist in the city an hour away (Indianapolis) so he/she can take a look at her with a camera and get a better idea what is happening.

Really, I just want to know if anyone has gone through something similar and how did it turn out?
Have you had to take your baby home on an NG tube? We will be trained in how to insert and change hers and I am TERRIFIED, especially knowing that during the training, we'll have to do it to her numerous times and I know it can't be comfortable. I can't bear the thought of doing that to her over and over again just for the sake of learning how to do it ... I wish there was a mannequin we could practice on. It kills me.
Have you gotten close to going home and your baby had another episode before leaving the hopsital? (I don't think they will send her home on monitors, the doctor really doesn't like to do that because he feels they're too intrusive, but it's been tossed around.)

It kind of sucks not knowing what is going on. I am just grateful that everything else about her is tiptop.

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Date:2011-01-23 17:58
Subject:Sorry to post this here; I'll delete it after I get a response

Maintainer 'todayidream'-- I need to speak with you and could not find any method to contact you. Please message me an email address or some way to contact you regarding this community.

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Date:2010-12-18 19:09
Subject:cold/flu/rsv fears

i apologize in advance if this post sounds so disjointed but there is a lot of history that i hope to cover.

my baby was born at 32 weeks with respiratory distress syndrome, a PDA valve, slight murmur, needing surfactant, anemia, jaundice, needing oxygen etc. we were discharged and 9 days later, we went back because he had acid reflux, i had overactive letdown, and he had suck/swallow/breathing issues that caused him to choke on my milk and he turned blue so on we went to the PICU for another 5 days til we were released.

we were almost ineligible for synagis because he was over 32 weeks and the cutoff is 32 weeks or less. but we got the shots because he was in the picu and our pediatrician fought the insurance for him to have it.

so needless to say, we hibernated for the first cold/rsv/flu season because we were afraid that he would get sick and have serious aftereffects from getting any kind of sickness. we would strip off our clothes and wash our hands in the very beginning. we went directly to the back and not waiting in the waiting room  at the doctor's. we carried hand sanitizer and lysol wipes with us EVERYWHERE we went and used them after we touched anything that others might have. we never put our baby in public high chairs in restaurants and we never let people over during the cold season because there was just too much risk of people being sick. it was about 4 people that he got to see during the winter. our baby was literally in a bubble. i mean, literally, we have OCD about germs and we were never like this before having a preemie baby.

fast forward to now: we are back to hibernation and although we'll take our baby (now 14 months) to SOME places, we avoid all public places  where there might be a lot of kids. so malls, library, etc are off limits. if we go out anywhere, one of us is at home with baby so that he isn't in too much contact with germs right now.

so this is where my husband and i differ in our child raising thoughts: i'm with my husband on keeping my baby (toddler?!!) free from sickness for the first two years but my husband read something on a preemie site where someone's kid got RSV at age 3 or 4 and even 5 years old. seriously, i feel bad that their kid got sick but if i have to closet myself off from the outside world til my kid is going to kindergarten, then i'mma seriously hurt someone. probably my husband. and my husband was saying that he wants our son sickness free for as long as we can but til when? i understand that my husband doesn't want to go back to the hospital because our kid is sick....but we can't make our kid a bubble boy forever. he needs to see other kids and be with other kids....and get sick every once in awhile. i'm of the mindset that a little dirt and germs for a kid is ok and actually helps him. my husband was saying that he just wants to keep our kid clear of sick people during the winters but it's so isolating if we keep doing what we've been doing.....

i guess i'm wondering if any of you have gone through the same thing. do you keep your kids safe from sick people? how long did you keep them healthy by the power of lysol and purell?

hope this made sense!

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Date:2010-11-17 22:52
Subject:It's Prematurity Awareness Day!

Well, it technically still is where I am, but only for another hour.  I wanted to get this posted here earlier but, well, life.

I've been thinking of this community a ton today.  The Fight For Preemies Bloggers Unite event has generated a TON of blog posts about these precious babies.  If you haven't already, I hope you get some time in your busy day to read through some of the posts.  Some of them take me back to the NICU like 1999 was just yesterday.  Some of them break my heart.  All of them are amazing testaments to love for a preemie.  They're truly amazing.  They made me think of you guys and all of our experiences. 

Here's my submission, 'cause  I said a couple of weeks ago that I'd come back and share it.  Did anyone else post anything?  I'd LOVE to read.

I hope that everyone is doing well. Take care, everyone.  

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Date:2010-11-03 09:30

I don't know if everyone is already aware, but on November 17th (2 weeks from today), the March of Dimes is coordinating a "Bloggers Unite" event to raise prematurity awareness.  The event, called Fight for Preemies calls for everyone available to post a blog entry about their preemie experience / a preemie they love.  Right now, only 218 bloggers are registered for the event, even though 1 in 8 babies is born prematurely and so many people have been touched by these small lives. 

I know the community has been quiet lately, but I am hoping that someone checks out this opportunity to share their story and decides to participate.  I'm participating because my son Jonas was born at 26 weeks and is now a healthy and active 10 year old.  My son Christopher Robin, however, was stillborn at 22 weeks just over thirteen months ago.  I am now pregnant again for the third time, and am doing everything I can do carry this pregnancy to term.  But at the end of the day, I just don't know what will happen and I am terrified for my daughter.  There are more questions than answers and we need to keep raising those questions and fighting for answers if we're ever going to reduce our children's risk of having premature babies themselves.  I am excited to help raise awareness just by talking about my two beautiful sons.  

Please join.  Write, or read the blog posts submitted, and share them with your family and friends.  And if you are participating, I'd personally love to know so I can read your contribution, if that'd be okay. 

Thanks for your time!

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Date:2010-05-17 10:48
Subject:Anti W sitting short

I come to you all seeking some advice...
Years ago, when my youngest twin was having problems with W sitting, I found some shorts on line that were designed to prevent that. They were a spandex mini-skirt type thing, that were stitched down the center, to create "legs" butwould't allow enough hip movement to W sit. I can not remember the name of these shorts, or the website, and my google-fu is failing me. Our old PT has a client who needs a pair, and I can't remember, to send her in the right direction. Please, someone has to know what I'm talking about.
Thank you!!!


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Date:2010-02-27 19:32
Subject:Trying not to stress out

I don't post here too often any more. My preemie is now 3 and doing wonderful. But (and I remember asking questions about this at least 2 years ago), I got pregnant again.

I've been doing very good not thinking about this too much. My first daughter was born at 34 weeks.

I'm 25 weeks along. SOO theoretically 15 weeks left...however, its 9 weeks until when my 1st daughter came. I am trying so hard not to stress out about the possibility vs probabilities of having another premature child, cuz I know it will only make it that much worse!
But I'm still a little stressed about it all.

While I am very glad I have a Level 3 NICU less then a mile away from my house the 5 days I spent there with my little girl was more then I ever wanted to. The thought I may have to do it all again freaks me out.

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Date:2009-12-04 13:35
Subject:MasterCard matching Mard of Dimes Donations through Dec 31st

Hello! The March of Dimes has long been synonymous with the fight to save preemies. Through the end of December, if you donate to the March of Dimes with a MasterCard, they will match your donation. Go to the March of Dimes donation page to see how. This might be a great time to create a band in honor of your NICU survivor or angel baby. To create a band, go here. The band can list the names of all the donors who have contributed to the March of Dimes in your baby's honor as well as show the total amount raised in your baby's name. If you were looking to give friends and family an opportunity to make a charitable donation in lieu of holiday presents this year, this might be something worth looking into.

And no, I'm not affiliated with the March of Dimes in any way. I was just going to create this band to give folks a charitable contribution option for our upcoming wedding, and so created a band in the memory of our son who was stillborn at 21 weeks just 10 weeks ago . (Our 26 weeker turns 10 next week and is doing great.) I signed up for their newsletter and got the email with the matching gift information so wanted to pass it along.

I hope everyone is doing well. Thanks for your time. :)

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Date:2009-09-20 14:12

Our little girl is almost 7 months and has outgrown a ton of her stuff. Please take a look at what we have for sale if you're interested. Some items included are:
Arm's Reach Co-sleeper
BumGenius Cloth Diapers
GroBaby Cloth Diapers - she didn't outgrow these, we just have too many :-)
Organic Moby Wrap - again, we just have too many carriers now
Starsling Baby Sling
Cloths from preemie size to 6 month

I wanted to give my communities a chance to buy anything before we listed them on Ebay. If you need more info, feel free to email me directly or comment here.

**please remove if not allowed**

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Date:2009-08-30 14:11
Subject:Does anyone have any experience here?

Hey everyone-

In a while I'm heading over to Legacy Emanuel Hospital in Portland, OR because I'm showing signs of pre-eclampsia (which is what resulted in my 1st daughter being born premature) and need to be checked out. While I'm mostly optimistic that this time we're catching things early enough that my baby won't be another preemie I am still, understandably, concerned. Does anyone have any knowledge of their NICU and the staff? How do they typically treat parents? Do they let you stay next to your baby (I've heard some NICU's are able to do that now)? Anything you feel is relevant without being nasty (it's the internet so I always feel I have to add that).


P.S. To all those moms dealing with a new preemie, have hope. My daughter was born at 31 weeks 5 days and is now a thriving and healthy 3 year old so I know it can go right even if it doesn't always. *hugs*

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Date:2009-06-03 10:39
Subject:Sad news
Mood: disappointed

I know that many of you are readers of Emily McDonald (a member of this group), mom of Dakota, via the "Two Preemies and the Big Sister" blog and her other blogs (including one here on LJ). Emily and I shared lots of information with each other about chronic lung disease and commiserated about our children's medical issues. (My preemie is Ricky, now 13, who has cystic fibrosis and other issues...

I got word today that Emily has been arrested. Details are here and many other places in the Texas media (check Google news if you wish).

I am in total shock. It sounds like Emily needs help but I am so sad for her husband Raff and her kids. Please keep them all in your thoughts and prayers (if you pray).

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Date:2009-04-30 16:40
Subject:My 16 year old baby...

She was so funny, she had to have oral surgery last week to have her wisdom teeth removed. So what was bothering her? GETTING AN IV !!!

I had to reflect and just laugh... I said to her "Darlin' look at your feet, look at all those scars, those are from blood tests... look at that scar on your hairline, that's from an IV!! You're worried about getting one in your arm! bwahahahahahahha"

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Date:2009-02-22 22:08
Subject:Participating in the March for Babies
Mood: hopeful

This year I will be participating in two March for Babies events here in Tennessee. One in Lewisburg, the other in Nashville. I am walking in memory of my son Drayke and all the other babies I have seen lost during my stay at both Centennial & Vanderbilt. The March of Dimes has done so much for premature babies but more is needed. Please sponsor me in this as it goes to one of the most worthy causes I know of, our future children.

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Date:2009-01-27 02:53
Subject:Drayke is with the Goddess now
Mood: crushed

At 8:55PM central time, Drayke Alan Crom passed from this world. He was two days shy of his nine month birthday.

There is going to be a memorial service at Vanderbilt Childrens Hospital in the chapel on Saturday.

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Date:2009-01-20 13:34
Subject:Sorry.. this got kind of weird and long..

Hey, haven't posted here in awhile.

My sister-in-law, my husband's sister, is 26 weeks today. I had my daughter 5 years ago at 26 weeks. I don't know why, but when my sister-in-law first got pregnant I felt really tense. I was just inordinately worried about her. I don't know why.. we've had other family members, only cousins though, have babies since we had our daughter, but they don't live near us and I didn't see them pregnant except for once really. For some reason I have this totally illogical feeling that pregnancies of people close to me can't turn out well. I don't know if it's because my sister-in-law has PCOS like I do, is overweight like I am, or because we've been TTC for 8 mo. ourselves, or what it is. She had a miscarriage a little over a year ago and when she was pregnant that time I wasn't very worried; I was just overwhelmed with this sense of doom when she announced her pregnancy this time. Anyway, obviously I don't let on about any of this to anyone, especially her, but it's been really upsetting me. I don't like feeling like this and worry that it's going to be ten times worse when I get pregnant. It's also a horrible mindset for someone wanting to go into maternity nursing to have! When she got to be about 3 or 4 months I started feeling more relaxed, but now that she's at the point where I was, I'm worried again. Has anyone else ever felt like this regarding others in their lives? I try to tell myself that I'm being completely illogical, that the human species wouldn't be here if we couldn't propagate, but then I remember that any species can go on even if some of it's members die off or are unable to reproduce.

Oh, my daughter is deceased and is my only child, which I'm sure is effecting how I feel.

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Date:2008-12-11 21:26
Subject:NCIU and the holidays
Mood: grateful

Every year at this time I remember sitting in the NICU, with christmas music playing, feeling empty and isolated because I could not take my daughter home. She was in a children's hospital for 65 days (intestinal blockage.) I pray for the NICU families all the time, but particularly at this time with christmas approaching. As you can see from the icon, my four year old is healthy and vibrant now, truly a miracle. God bless all of you, you are a great support system, even to those who have NICU graduate kids, but who still struggle with the process of healing. Thank you.

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Date:2008-12-06 18:36
Subject:a reintroduction and some questions

I've asked this question elsewhere in the past, in my pregnancy, parenting, and c-section communities, but I never get very good reasons. I thought you folks might identify with my situation more.

Some of you may remember me. I gave birth to my daughter Brenna Rose at 26 weeks almost five years ago. She fought hard for 7 mo. in the NICU, but eventually died due to complications of prematurity. I'm actually a maintainer here, but haven't been very active since we lost our daughter.

Anyway, we're now TTC #2 and I want to know if I will start showing earlier with my second pregnancy or not. As I said, my first only went to 26 weeks. My baby was measuring more like a 21-weeker, though. I never really thought I was showing much with my pregnancy, but after my c-section it was obvious that I'd gotten much smaller. Still, I was never very big. I'm thinking that since I was never very big, I won't show that early (I'd love to show earlier), or that perhaps I'll get to a certain size quickly, but then the stretching out will slow down.

Also, I am hoping to have a VBAC after a vertical incision. Has anyone here had one, or has anyone here who has a very low vertical incision (more common when your uterus isn't all stretched out yet) had a VBAC? Thanks!

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Date:2008-11-22 21:50
Subject:Weight gain
Mood: curious

How much did your baby weigh at birth and how much did they weigh at 3 months (actual age)?

Edited to add that I'm looking for answers from those who were exclusively/mostly breastfed.

My daughter has consistently (in the NICU and once home) gained weight at the rate of 1oz every 3 days (rather than the typical/average 1oz every day), and I'm wondering if this is similar to other preemies.

She was born at 32 weeks if that matters.

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Date:2008-10-30 06:46
Subject:I wanted to introduce myself and my son

Hi every one *waves*. My name is Sara Rae and I have a son who was not a preemie but spent the first three months of his life in the NICU, and he is pretty much in and out of the hospital all the time. My son Kadyn was born on 07-02-07 at 8:11 am in the boring via c-section. When I was 22 weeks pregnant they diagnoised my son with severe congenital hydrocephalus. They pretty much gave him no chance at life, but my mothering instinct told me to just keep going with this pregnancy. So every week I was taking into ultrasound to check Kadyns head circumfrance. (I'm sure everyone here knows what hydrocephalus is? If not, I can explain or googling it may be easier) At 39 weeks gestation, I went in for an ultrasound and because by now his head was so overly large they couldn't find a fluid pocket. That was on a Thursday and they schedualed my C-section for that Monday because the baby wasn't in distress or anything. Monday came, and I had Kadyn. He came out pink as can be, and crying. The most healthy looking newborn I'd  ever seen. His head was 55cm. He was than taken to the NICU at the hospital where he required oxygen through nasal prongs for about 10 minutes. I got to hold him for maybe 10 minutes and he was put back in his bed and I was wisked to my room to recover. He was transfered to Childrens Hospital where he recieved his first brain surgery to recieve and VP shunt. He did so well. He acaully decided he didn't want to be intubated anymore, and extabated himself that day. Since then Kadyns been a "puller outter". Kadyn spent the first three weeks at the NICU in Childrens. He wasn't feeding on his own, and when he came home I had to learn to put the NG tube down his nose. I did that and took my little bundle of joy home. 3 days after being home Kadyn was off his NG tube. About a week later Kadyn came down with a serious shunt infection. HIs shunt had acually erroded through his skin. He was a very sick child. Kadyn went in for emergancy surgery and I was told that i may want to call the hosptials Chaplin becuase he may  not make it. He made it, and the next day was back to his normal self. He was on an EVD for 2 months. He has 5 EVD rotations to help get rid of this infection, He finally came home again. While in the NICU this time, he deveolped a siezure disorder. He is now on 3 medications to help control his siezures. Kadyn is delayed in just gross motor skills. He can not hold his head up, which means he can't sit up or crawl or anything like that.

Today Kadyn is 15 months old. I was told that he wouldn't make it after he was born, then i was told he wouldn't make it to 6 months, then 1 year. Well here is he 15 months later and he is still thriving. He is at the right height and weight for a 15 month old, his head is still larger than normal but this is normal for hydro babies like him. He is amazing little angel and my hero. I of course have pictures. What NICU mom doesn't lol.

My Amazing Little Hero KadynCollapse )

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Date:2008-08-22 21:00
Subject:Please spread the word about Drayke's Blog

I understand if the moderator pulls this post but I need to get this out to everyone I can.

My son was born in April at 28 weeks, 3 days gestational. After four months things have turned for the worse.

There may be someone out there that can help with anything concerning him. Does anyone know of doctors, treatments, fundraising, anything? We are entering into uncharted territory now and dont know where to proceed.

A local church and small business are both doing fundraisers for our son. We will be needing all the help we can get and this is a very small town.

We will be finding out Monday if he makes it thru the 2nd stage of approval for transplant based on the info Centennial gave them. If we are the next step is he gets transported to St Louis Childrens for a physical assessment. Where Drayke goes, kapua23 and I will be going for the duration of treatment and recovery.

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