NICU Parents

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.

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.
Thanks.

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!

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.  

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!

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!!!

cross-posted

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.

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. :)

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).

Thanks!

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*

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... http://cfboy.blogspot.com.)

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).