DD is 2wks old in the NICU.......

A place for moms and moms-to-be with special needs children to find support.

Moderators: B Michaelson, southernbelle, jessm, 1daysoon, reapage, Honey Bunny, unaffected, maddy, TrebleLily

DD is 2wks old in the NICU.......

Postby MommaSweets » Fri Jan 25, 2008 3:42 pm

and will be there a while. She was born when I was almost 26 weeks pregnant. Her doctors heard a heart murmur and I think it might be genetic since it is on both sides of my(maternal and paternal) families.. and maybe not PDA. She just recovered from a setback after being given Ibrophin for her murmur which they think is PDA. Her kidneys shut down for 3 days and she gaind 200 grams of fluid. She has since lost 60 of those grams, and will get Echocardigraphs next week to tell for sure.

I don't know if anyone still posts here but I just need to talk to other moms who have had premature babies and maybe have gone through something like this.

I think I just need to feel that this was something I could not have prevented. I search the internet for all this infomation and I couldn't prevent my baby from getting swollen and having to be intubated after only having a CPAP and being on 23% oxygen.

Any insight, info, or stories would be much appreciated.

I'm off to the hospital now but will be checking back in the am :hi:
Sweets
*25*
:angel: 1.29.05@15wks
Image
Evelyn Marleyah (due April 22, 2008) was born early@25 wks ~January 11th, 2008!!!
ImageImage
User avatar
MommaSweets
StickyDuster
StickyDuster
 
Posts: 151
Joined: Wed Aug 15, 2007 12:00 am

Postby Baby4Staci » Fri Jan 25, 2008 10:38 pm

My prayers go out to your precious little angel for a quick and complete recovery!!!

Good luck in your journey.
Mason Anthony born 1/9/07
Savannah Ray born 5/9/09
User avatar
Baby4Staci
Girlfriend
Girlfriend
 
Posts: 8008
Joined: Sat Aug 12, 2006 12:00 am

Postby Lindsey » Fri Jan 25, 2008 10:49 pm

I did not have a preemie so I can't offer advice on that.

I just wanted to assure you, there is nothing you could have done to prevent this. I'm sure it is hard not to feel like it though... **HUGS** to you and I hope your little sweetie gets stronger every day.

Kathyaden was due around the same time as me (Aug 2007) and had her baby at 23 weeks in April of 2007. I'm sure if you PMed her she would be happy to talk to you :) Her little Abigail is 9 months now!
Lindsey
Moderator
Moderator
 
Posts: 15379
Joined: Sat Nov 25, 2006 1:00 am

Postby MommaSweets » Sat Jan 26, 2008 3:55 pm

Thank you ladies for replying..IT is just so hard see my baby like that and not being able to hold her and really do anything to "make it better"
Sweets
*25*
:angel: 1.29.05@15wks
Image
Evelyn Marleyah (due April 22, 2008) was born early@25 wks ~January 11th, 2008!!!
ImageImage
User avatar
MommaSweets
StickyDuster
StickyDuster
 
Posts: 151
Joined: Wed Aug 15, 2007 12:00 am

Postby mirose » Sat Jan 26, 2008 7:12 pm

I had Clark at 28 weeks, he was 1lb 13oz. He had a PDA, it did close up. He was on CPAP for the longest time. One thing we learned is the nurses normally have a better idea than the Dr. on day to day things.

Also, I know this may sound morbid, and I am sorry if it upsets you. But your daughter will have bad days and good days. Expect that you may almost lose her several times. Clark came out screaming. He was on Cpap till day 3 then turned a grayish color and did not do well. He had to be put on a Vent. Later on he was doing very well, but he would suddenly have bad days. Sometimes we could not even lift the curtain to see him. He had chest compressions on 3 separate occasions. Other than that, he had nothing really wrong with him.

I wish you and your daughter the best. If you need to talk, you can IM me :-)
Baby Twinkie ~ 71 days in NICU. Home now on a monitor.
Image

BFP 12/26/07 ~~ Baby Zinger!
Image
User avatar
mirose
Girlfriend
Girlfriend
 
Posts: 1013
Joined: Mon Aug 21, 2006 12:00 am
Location: Grand Rapids, MI

Postby kated » Sun Jan 27, 2008 1:07 am

Best of luck to you - NICU nurses and docs are wonderful and usually treat the parents as part of the "team" - NEVER be afraid to ask them a question or to have them explain something to you again - IT is your baby and the only thing you can do is be an advocate for her right now! Let her know you are there by talking to her (we read to our son constantly) and don't worry - you will be bonded to her just as much as moms who bring thier baby home right away. My son was not early, but was in the NICU/CICU for 85 days! - He was born with a un-diagnoses heart condition. He was in a med induced coma and vented on hi-fi for almost 1 month. I didn't get to hold him until then (except for immediately after birth) - Today he is healthy and happy AND a complete mommy's boy! My thoughts are with you!
DS - Jack - April 2007
DS - Thomas - January 2009
User avatar
kated
StickyDuster
StickyDuster
 
Posts: 152
Joined: Tue Aug 15, 2006 12:00 am

Postby mirose » Sun Jan 27, 2008 2:04 pm

ok... Now that I am a little more awake... Have they assigned you a Social Worker yet? I was offended when I got one, but then realized they are not after you because they think you will be a bad mom, they are there to help you get anything you need for your little one....

If you do not have one, inquire about yours. Ask the desk personnel. How much was your daughter at birth? If you have a Social Worker (I will refer to them my SW from now on so it is easier typing) Inquire about maybe meal cards. They gave them to some parents when I was in NICU, but if you live to close they may not give you any.... Still, does not hurt to ask and it helps you remember to eat when you have them.... Also in a few weeks when your daughter is able to "wear clothes" ask if they have any. most of the time they are simple smocks that open up the arms and front. Also see if they have donations of hats and booties... I swear it really made my day when Clark had some sort of item on... It just made me feel better that things would be ok because he could wear "clothes". If your hospital does not have any let me know and I will get some for you.

Also you can ask if they will allow you to change diapers and depending on how thye are feeding your little one, if you can hold the gavage syringe. When they do allow you to hold her, ask about kangaroo Care also called Skin to Skin... It it really good for you and little one to do this. Yes it can be done with a baby that has IV's and Cpap. If you can hold the baby out of the incubator then you should be able to do Skin to Skin (that is what a nurse told me). Though sometimes they do get a little to comfortable and set off a few more alarms, but that is normal. Studies have shown that babies do better that have skin to skin. Plus, there is nothing like having your baby against you.

Oh, Ask about if you can use your own receiving blankets in the incubator. Ours let us. Just the simple flannel ones. But it allowed for a more personalized touch. If you can make a hem, you can go to Joann Fabrics and make some using their baby flannel... That is what we did.

I found out most of this stuff after a month of being there. Wish I would have known sooner...

I will try to find some pictures of him when we had our own blankets in there so you can see.

*hugs*
Baby Twinkie ~ 71 days in NICU. Home now on a monitor.
Image

BFP 12/26/07 ~~ Baby Zinger!
Image
User avatar
mirose
Girlfriend
Girlfriend
 
Posts: 1013
Joined: Mon Aug 21, 2006 12:00 am
Location: Grand Rapids, MI

Postby MommaSweets » Mon Jan 28, 2008 8:50 pm

I thought I would just let everyone know that Evie is doing so much better now. I mean she had started peeing, so much that they stopped the medication but now she isn't going so they started it up again. She is eating more and even more feisty then she was before.
She is also over 2lbs now and I should be able to hold her for the first time some time this week, should she gain 40+ more grams. Your prayers have meant and done so much for my DD and we really appreciate it.

oh my sliver lining.. I got to see Evie's eyes/face for the first time since she was born....

I haven't been issued/given a SW by the hospital although my insurance has given me a case worker don't know if it's the same but I talk with her about once a week.

The NICU does do Kangaroo Care which I plan on doing ASA(As Soon As) I can hold Evie(which should be soon) since she is 960 grams and they want her to be over 1000.

They are letting my do things like take her temp and hold her tube for feedings and I declined changing her diaper only because there are still too many wires. I need to ask about clothes b/c that too would make my day to see my DD in SOMETHING besides her diaper.. I found this website that has clothes just for preemies (b/c of their IV's and wires)....


Thanks so much for these questions to ask the docs and I'm glad I did..it does make me feel like I'm taking care of Evie also.

I'll keep you all updated thanks so much
Sweets
*25*
:angel: 1.29.05@15wks
Image
Evelyn Marleyah (due April 22, 2008) was born early@25 wks ~January 11th, 2008!!!
ImageImage
User avatar
MommaSweets
StickyDuster
StickyDuster
 
Posts: 151
Joined: Wed Aug 15, 2007 12:00 am

preemie

Postby babymagik18 » Tue Jan 29, 2008 8:29 am

We are in the sameboat as you if you need anyone to talk to. Things DO get better but as you know its a rollercoaster ride in the NICU. My twins were born at 26 weeks on christmas so they are 5 weeks today. Marc had chest tubes, a tummy drain a brain hemmorage but has pulled through and now joins his sister on bypap and full feeds. I would totally do the kangaroo care i honestly just started witrh my 2lb 11 oz daughter but she LOVES it and relaxes for a long time afterwards. Your princess id going to be just fine. Jesus loves to heal children and babies are so tough. god bless
melodi
Melodi- 25, dh 26, TWINS DUE 3/27..OUR IVF MIRACLES!<br>Image
babymagik18
Member
Member
 
Posts: 50
Joined: Thu Jul 26, 2007 12:00 am

Postby PixieB » Tue Jan 29, 2008 3:48 pm

My Talia was born at 27+4 weighing 700g (1.5lbs). She had PDA which closed just fine with the help of the medication they used on her.
I spent three months expressing every three hours (including getting up to an alarm clock overnight in order to keep my supply up), and visiting the hospital nearly every day. I got my first cuddle at 4 days (I was shocked) and my first skin cuddle at 9 days. She was intubated for almost a day, then on CPAP for 7.5 weeks. She pulled out her NG tube 2 days before coming home and never looked back. She's now fully breastfed (all that pumping paid off) and fully mine!

I know you're not from Australia, but this is a prems community I adore and is really really helpful:
http://www.lilaussieprems.com.au/
I know there are other prem sites in the US too, but I haven't looked for them.

From everything I've read and all the other prem mums I've spoken with, all of them have gone through phases of feeling guilty and responsible for their child's premature birth. My baby girl was born early because an u/s had shown she was the size of a 24 weeker and that the placenta wasn't working properly. Others I know went into premature labour (many weren't believed by hospital staff when they said they were in labour), at least one hadn't felt her baby kick in the last while and saved her baby's life by being that aware.

Be as involved as you can. Ask to help with nappy changes, with changing the sats probe around. Ask about your baby getting a prem sized dummy which you can put a couple of drops of milk on to build and keep their suck reflex. Keep a diary of your baby's progress (I'd write in mine during the nurses handover when I wasn't supposed to be in the NICU), mine's an absolute treasure to me, though it's hard to look back on. Ask for footprints to be taken as soon as your baby's skin is strong enough. My first footprints from Talia are from when she's 2 weeks old and they're treasures. I've been taking her footprints every month since and it's amazing to see the progress. Take loads of photos, including size comparison photos with a teddy or your wedding ring or something similar.

Ask about what stage your baby needs to be at before you can have a cuddle. Some nurses will be better than others.

I also bought some beautiful prem sized clothes for my baby girl. I didn't mind her being a naked baby whilst in the isolette, but once she was in the open cot somehow it was so important that she be dressed. This woman is Australian, though she may post internationally for you. She makes gorgeous NICU friendly prem clothes which you can have your choice of fabrics rather than being stuck with just pastel pink, pastel blue or white.
http://www.loddonmalleekids.org.au/inde ... &Itemid=50
She does a beautiful job. I've got photos of my daughter in her prem clothes here:
http://pics.livejournal.com/littlebutto ... TummyBear/

And more prem clothes:
http://www.babybunts.com.au
http://www.loddonmalleekids.com.au
http://www.earlybirds.com.au
http://www.momentbymoment.com.au

And quite seriously, girl prems do better than boy prems. They'll still go up and down health wise, because that's what it's like to have a prem.

Good luck, stay strong, and know that you don't have to endure this alone. :hugs:

PS Bump and beyond (like with my ticker) let you do multiple dates on the ticker, so you can use the birth date and the due date, helps you keep track of corrected age and actual age at the same time :wink:
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
http://pics.livejournal.com/littlebutto ... y/0000scpq
Image
User avatar
PixieB
Girlfriend
Girlfriend
 
Posts: 1730
Joined: Sat Jan 27, 2007 1:00 am
Location: Australia

Postby mamalynn » Wed Jan 30, 2008 9:16 pm

oh my heart goes out to you and your family. looks like you have some great advice from moms of preemies! glad to hear your last update on evie and that you got to see her eyes for the first time! what a fantastic moment for you both! you are in my thoughts!
michelle 41, dh 44,
pj 5 diagnosed with down syndrome & av canal defect of the heart (repaired 2007)
Image
PhotoEffects-635011925132850000 by milybr, on Flickr
Image
Repeat losses & MTHFR
Image
User avatar
mamalynn
Girlfriend
Girlfriend
 
Posts: 2027
Joined: Thu Aug 10, 2006 12:00 am

Postby _kelly_s_ » Thu Jan 31, 2008 7:36 pm

My twins were born at 29 weeks (2lbs 8oz, and 2lbs 6oz). One of the twins was diagnosed with a heart defect during an u/s at 24 weeks. Sadly, she didn't make it due to her tiny size. She had a full repair on her heart, but developed an infection.

I just brought my other daughter home on Jan 8th after 85 days in the NICU. I can tell you that being a NICU mom is hard work. There was lots of driving for me back and forth to the hospital. When they are tiny, you can only sit by the bed and watch. As your baby grows, you'll be able to hold her more and more. Then at some point she'll be ready to come home. It feels like a lifetime, but she will get there!

Best of luck to you and your Daughter. PM if you have questions or need to talk.
Kelly (32) DH (33) IVF miracles- twin girls! Born 10-16-07 @ 29 weeks Brooklyn Marie- became an angel Nov. 30th Aubrey Lynn- came home after 85 days in NICU on 1-08-08<br />Pregnant again! EDD Nov. 16th
User avatar
_kelly_s_
StickyDuster
StickyDuster
 
Posts: 114
Joined: Tue May 01, 2007 12:00 am

Postby bonita23 » Tue Feb 05, 2008 11:51 am

My heart also goes out to all you girls, your stories brought tears to my eyes. As a nurse and having my baby in the NICU (only for 8 days), I just know that you go through a wide range of emotions. Do all you can for the little ones and he nurses will always support you, even if you are not comfortable. Be vocal in your LO's care, speak with the neonatalogist daily. No question is ever a stupid question. At the hopital I delivered in, the neonatologist was so wonderful. When i was still there b/c of my c-section, she would actually come in my room early in themorning after rounds and give me updates. She spoke to me as a nurse and as a scared first time mother. I have seen alot of uncaring Dr.'s unfortunatley working in the Medcial ICU, but I believe it takes somewho who is really caring and dedicated to become a Neonatologist. You will get through this. Your little one knows mommy is there.
ImageImage
ImageImage



Just Gineen and Gabby now!
DD-Gabrielle Lynn born on Sept 13th 2007 weighing 6lbs 12oz 19 1/4 in.
User avatar
bonita23
Girlfriend
Girlfriend
 
Posts: 936
Joined: Sun Feb 11, 2007 1:00 am

Postby MommaSweets » Sat Feb 09, 2008 1:46 pm

I know it's been a while since I have update :oops:

On Thursday my DD had Surgery for her PDA and it has been a really trying time for me. Her surgery day was also my birthday and she gave me the best present by opening her eyes to look at me and smile back at me. She did very good through surgery and has been doing really well so far in her recovery. So well she was ready to be transported back to our home hospital 24 hrs after her surgery.......


So far all things are looking in a better direction for now...Thanks for the prayers and thoughts :hi:
Sweets
*25*
:angel: 1.29.05@15wks
Image
Evelyn Marleyah (due April 22, 2008) was born early@25 wks ~January 11th, 2008!!!
ImageImage
User avatar
MommaSweets
StickyDuster
StickyDuster
 
Posts: 151
Joined: Wed Aug 15, 2007 12:00 am

Next

Return to Special Needs Babies

cron