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Preemie/NICU sub-forum or sticky? - Page 5

post #81 of 111
7/12/06 at 9:15pm
You said it so beautifully! I know EXACTLY what you mean. I still kick myself every day for the things I did/didn't do/allowed!
I don't want this to happen to someone else!
If MDC doesn't have a Nicu/preemie sub-forum here to give people vital and very time sensitive information regarding AP/NFL who will?
I had the Dr. Sears preemie book and, although it was very informative, it barely scratched the surface.
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post #82 of 111
7/12/06 at 11:00pm
I love the idea of having it in the pregnany section, or birth and beyond maybe. I know I keep reiterating this, but I think women who are facing PTL or a possible NICU stay for their DC would love to have a resource of ideas and BTDT mamas.
post #83 of 111
7/13/06 at 12:12am
Quote:
Originally Posted by crissei
I had the Dr. Sears preemie book and, although it was very informative, it barely scratched the surface.
it scared the daylights out of us w/ his not so happening for micros like my dd
post #84 of 111
7/13/06 at 12:58am
I think this would be so helpful for lots of reasons. I had three months of Preterm Labor, DS was born at term but with pneumonia. I am still trying to process what happened when he was in the NICU. I can't get straight answers from doctors, I wonder what could have been done differently, and I have SO much guilt for the way I handled things (I had never heard of AP then - but I should have known better. I can't believe I didn't).
Also, I would love to help out moms going through this now, so that they don't have the same residual issues I do, or just so that they have support. I learned a lot from the experience and from research I have done since.
It never occurred to me to look under special needs, I just happened to catch this thread on the main board.
Amber
post #85 of 111
7/13/06 at 2:55pm
Cyneburh s how many weeks along are you now? Were you contracting at all or was it just the water breaking? I think there are some moms on here who had ruptured membranes for many many weeks before delivering. There's a book called "preemies", I'll see if I can link to it, that has information om babies born at different stages of development and what some of the most common concerns and tests and procedures are at each stage.
http://www.amazon.com/gp/product/067...006232?ie=UTF8
post #86 of 111
7/13/06 at 3:10pm
That sounds really good! You're almost 33 weeks! If your babe is born pretty soon, you probably won't have a very long NICU stay at all. And maybe he/she will hold out a little longer and you won't have a NICU stay at all! My 36 weeker didn't, and my 33 weeker was only there 23 days. I'll keep you and your babe in my thoughts.
post #87 of 111
7/14/06 at 1:16am
Oh no problem, I don't mind posting at all. She was 4 pounds 1 ounce at birth, and lost some weight down to 3 pounds 7 ounces. She needed oxygen for less than 12 hours, probably because I had steriod shots for her. I don't remember them discussing this with us while I was in the hospital, but because of some complications I was a little out of it. Her records indicated that she had an infection, and they gave her antibiotics, but I'm not really sure if it was more of a preventative thing, since I had a fever and a virus when she was born.

She was IV fed only for a day or two, and then when she was a little more stable she was tube fed colstrum. Aftera while she was tube fed breastmilk and then bottle fed breastmilk because she still wasn't latching well at the breast even though we were trying. She did end up learning to nurse, but it took us three months. Most of her stay in the hospital was to learn to eat and to grow larger and maintain temperature. She was released at under 5 pounds, I think 4 pounds 11 ounces after 23 days there.

Let's see, we had to do the carseat test before being allowed to go home. They montior heart rate and breathing while the baby is in the carseat, the angle sometimes makes it hard for preemies to breathe well. They have to have a good heart rate and breathing for an hour and they pass. She failed twice and finally passed on the third try.

While in the hospital they tested her hearing, did an ultrasound of her head, did some blood tests, and measured her urine output by weighing her diapers and counted her dirty diapers as well. She was fine on all these things, just a small baby, as I said.

Unfortunately we didn't know a lot about kangaroo care, and i was exhausted from the traumatic birth experience and pumping around the clock plus nursing my older daughter. I was really torn between this tiny baby that needed me but had all these expert nurses around to care for her, and didn't yet seem like "mine" and her older sister, who was very vocally missing me and confused about why i had been gone so much and was so sad. I spent less time there than i should have, and didn't work on nursing as hard as i would have like until we were home. That made bonding with her difficult at first. but she is the light of my life now.
A few minutes after birth:
http://i13.photobucket.com/albums/a2...Firstnight.jpg
Three days old:
http://i13.photobucket.com/albums/a2...ehandsmall.jpg
http://i13.photobucket.com/albums/a2...u/PC240012.jpg
Ready to come home:
http://i13.photobucket.com/albums/a2.../readytogo.jpg
This year, Father's day:
http://i13.photobucket.com/albums/a2...thersday06.jpg
post #88 of 111
7/14/06 at 4:40am
Cynburh, my girls were born at 33-5/7 and were in the NICU for 2 weeks to learn to suck better and grow. After they came out from the bililights, they cobedded in an open bed for 9 days. I know you've been hearing it, but the longer you can go, the better. I'll be praying for you and your babe!
post #89 of 111
7/14/06 at 10:06am
Quote:
Originally Posted by Amys1st
it scared the daylights out of us w/ his not so happening for micros like my dd
It bugged us with his only two types of parents: the go with the flow and the high maintenance. Because we asked a lot of questions we were considered high maintenance?
post #90 of 111
7/14/06 at 10:11am
Quote:
Originally Posted by Marlow's mom to be
It bugged us with his only two types of parents: the go with the flow and the high maintenance. Because we asked a lot of questions we were considered high maintenance?

I guess we were considered high maitence too then. Funny I saw his book and thought- Great we would have never survivied w out the Baby book so this will be great. Wrong!

DH thinks it needs a new edition and it hasnt been updated w the times.

There is a story out today about the growing amount of premature births. The news showed our nicu and had Maggie's Dr on. Watching the couple who live 2 blocks away from me talk and seeing the isolette and all those noises etc sent both of us into a crying fit. I guess its still more raw than I thought
post #91 of 111
7/14/06 at 10:23am
Quote:
Originally Posted by Amys1st



I guess we were considered high maitence too then. Funny I saw his book and thought- Great we would have never survivied w out the Baby book so this will be great. Wrong!

DH thinks it needs a new edition and it hasnt been updated w the times.

There is a story out today about the growing amount of premature births. The news showed our nicu and had Maggie's Dr on. Watching the couple who live 2 blocks away from me talk and seeing the isolette and all those noises etc sent both of us into a crying fit. I guess its still more raw than I thought
Interestingly, our neighbors 3 doors down also had a 34 weeker a couple of weeks after we did. We thought maybe there was something in the water. We even had our water tested afterwards. We never found out why Marlow was born early.

I'm so grateful for you putting your NICU thread in our DDC. Without it I would have felt so much more isolated.

My DH and I were watching a hospital show on PBS the other night and the DSAT monitor went off on the show and my husband started crying and I had that sick panicky feeling I used to get in the NICU and he made me change the channel. Those beeping alarms are forever stuck in our minds.
post #92 of 111
7/14/06 at 7:11pm
Kimber, have you reaccumulated any fluid? Have the doctors given you your AFI? I'm rooting for you! I made it 10 weeks between my rupture and ds's birth, but his lungs were quite stunted because I didn't have a lot of fluid. Feel free to PM me anytime!

And, once again, I am wondering why this need (very obviously a need) hasn't been addressed.

Mandy
post #93 of 111
7/20/06 at 1:32pm
Just giving this thread a bump. I really need it now. I've been dealing with nap issues with the girls (10-20 minute cat naps, overtired, fussy, arms-only) and was reading The Baby Book and NCSS and they both have charts on the average # of naps and hours babes need based on age. So, do I use cga or chronological age?
post #94 of 111
7/20/06 at 2:01pm
Quote:
Originally Posted by Cyneburh
Thank you!

They're talking induction because of the risk of infection from PROM between 34 and 35 weeks. I'm hoping to hold out a little beyond and make it to 36 weeks. Or at least into the 35th week. But I've decided to start advocating for that after I get to that point. It's just not worth it to advocate for it now since realistically I could go into labor at any point between now and then.
How are you doing Kimber?

My 35 week 5 day baby came home from the hospital with me so I would try to hold out as long as possible I wish you the best of luck
post #95 of 111
7/20/06 at 2:59pm
here is the NICU Maggie was at and the Dr is her Dr.
http://cbs2chicago.com/health/local_...194164354.html
post #96 of 111
7/20/06 at 7:16pm
Miraim- i'd use their adjusted age. Sorry about short naps and all, you must be so tired


Wondering why no answer on our requests? I saw that artists got a subforum after only 2 pages of requests. Nutrition got 4 new subforums. Here we have some moms in desperate need of support and we don't have a sub-forum? Honestly I feel a bit sad about that. A lot of the big "mainstream" boards have a seperate board for preemie/nicu issues and really I think it is vital that a commutity such as mothering should have one also, as it's really hard for us moms that follow this lifestyle to get any support on certain issues that pertain to a nfl lifestyle on the other "mainstream" boards.
post #97 of 111
7/20/06 at 7:38pm
Thanks Laura! That's what I was thinking since we use cga for developmental things and the body needs those naps to get to the developmental stages. We do great at night now (7-8ish bedtime and up at 7-8 with 1 night feeding). They just get so sleepy during the day.

I hav to say that I'm pretty disappointed in MDC about this. When you browse through the board, it seems like some of the boards could easily be done without but something that is such a big part of life for a lot of people is just ignored. Its not like I'm thinking "Well, my girls are preemies, but now that they are out of the NICU everything is normal and I can forget about it," because I can't. Everything I read, hear or talk about, I have to figure out cga or chronological? Then add or subtract 6 weeks if cga. Not to mention extra appointments, dealing with insurance and paperwork, and figuring out what things you should do for your preemie that you never dreamed of doing with a full-term baby. <<<sigh>>> It is something I knew I would have to deal with, but never thought it would be so tough.
post #98 of 111
7/20/06 at 7:50pm
Quote:
Originally Posted by mimid
I hav to say that I'm pretty disappointed in MDC about this. When you browse through the board, it seems like some of the boards could easily be done without but something that is such a big part of life for a lot of people is just ignored. Its not like I'm thinking "Well, my girls are preemies, but now that they are out of the NICU everything is normal and I can forget about it," because I can't. Everything I read, hear or talk about, I have to figure out cga or chronological? Then add or subtract 6 weeks if cga. Not to mention extra appointments, dealing with insurance and paperwork, and figuring out what things you should do for your preemie that you never dreamed of doing with a full-term baby. <<<sigh>>> It is something I knew I would have to deal with, but never thought it would be so tough.
Add to the list- rxs, after care appts, adjusted age when and when not, early intervention.....

Who is the mod? Can we PM her or Cynthia?? I would love to get this up and going its so simple and can be part of birth & beyond or right after that.
post #99 of 111
7/21/06 at 1:13pm
Quote:
Originally Posted by mimid
Thanks Laura! That's what I was thinking since we use cga for developmental things and the body needs those naps to get to the developmental stages. We do great at night now (7-8ish bedtime and up at 7-8 with 1 night feeding). They just get so sleepy during the day.

.
My preemies slept a lot (all of the time) for the first 3 months after birth. actually with baby #3 he only opened his eyes half a dozen times before 8 weeks
post #100 of 111
7/22/06 at 1:41am
I spent half the day looking for a preemie AIO.
I found one that is in the 2-4lb range.
http://www.preemie.com/get_item_kuu060.htm
What a nice sticky that would make.

Now has anyone here CD in the NICU/PCN? Will hospitals allow it? How do you deal with the I&O?
Hmm... would make for an interesting thread...
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