anyone else with a nicu experience - Page 2

[babycarrier]

I wanted to thank everyone for sharing their stories. It has meant a lot to me.

[USAmma]

Babies forgive very easily. I'm sure you'll remember it longer than he will. (((HUGS))

I don't have NICU experience but I do have experience with a sick baby. Mine cried and cried for 3 mos before I found a doctor who would take my concerns seriously. My baby took awhile to heal from that whole experience but she's a happy, well adjusted toddler today. It's amazing how resilient babies are.

[bri276]

I couldn't read all the stories because it hurts too much.

like others have stated I feel extremely lucky in that I had a short NICU stay with a full term baby and was acutely aware even at the time that other parents there were wondering if they'd come in to find out whether their 25 wker just had a brain bleed etc. I thank God I wasn't dealing with those kinds of issues. Yet it was, and is, still traumatic.

The 3rd midwife to check me around the 8th hr of labor was the one to question meconium. I still think it was brown blood. But of course, if you're in a hospital and anyone even *thinks* the word meconium, peds are sent up for delivery and forget about waiting until the cord stops pulsating and forget about holding your baby until she's all checked out and cleaned off. That's when they noticed her cleft palate and her rapid breathing and decided to admit her. She still has rapid breathing to this day at times, it's just a Jessica thing, not an oxygen thing, I know because I watched that sat machine like a hawk the 5 days she was there and several days once she was home. However she did once go down to the low 80s for some reason (maybe from being separated from mommy and taken into a cold, harsh, opposite-of-the-womb environment?) on the 1st night and that bought her a few more days. Then she got jaundice and was an extra-sleepy baby to begin with so that made it even worse, and she wasn't doing great with feeds because we could barely keep her awake long enough to get 40 ccs in her. She got better once it was purely breastmilk though they continued to give her Enfamil even when she had clearly marked beautiful colustrum in the fridge. That angers me more than anything else.
It was awful, congratulations left on our answering machine sounded so bittersweet. when I was home I couldn't eat, all I did was cry and pump and get ready to go back. The only upside is that there was never a bf'ing relationship possible so it didn't get ruined, and since she was so sleepy, I doubt she was too traumatized by the experience, and mommy and daddy were there a LOT. so while those five days still feel more like 5 years to me, it could have been so much worse.

[sweetpeasmom]

s Lily- you know i felt the same way about congratulations. People told me congrats and i was just like "what do you mean? my baby should still be inside me, my baby is fighting for her life and you offer me congrats, what congrats that she came 15 weeks early?" i didn't say it but it was what i felt.

[Brinda]

Originally Posted by sweetpeasmom

s Lily- you know i felt the same way about congratulations. People told me congrats and i was just like "what do you mean? my baby should still be inside me, my baby is fighting for her life and you offer me congrats, what congrats that she came 15 weeks early?" i didn't say it but it was what i felt.

Oh, god that made me want to cry. I was the same way. I was 27 weeks, and my mom said her and my sister were praying the baby would hurry and come so they could meet him! : He was born at 31. Not only that, but I had to bring the carseat in for a carseat test, and he flunked right away. When going home in the elevator with an empty carseat some rude jerk laughed at me and said I forgot something. I burst into tears. Congratulations were the last thing I wanted. I wanted prayers that my baby would live.

[mommystinch]

I'm not going to write everything out, but my 41 weeker was transfered from the birth center to the NICU because of fluid in her lungs. I was never afraid of the worst. I "knew" it was just amniotic fluid. But the whole experience, what they did to her, and the seperation is so traumatic. She was in the NICU for a full day, and then in a pediatric room with me for several more while they did more tests that weren't needed or warranted and made her have a full course of un needed antibiotics. Grr. The hurt and anger involved is so much. She is now 2.5 and I think about it all of the time. I used to just start crying out of nowhere... usually in the shower... just because it came into my mind. In fact, I started crying the other day about it in the shower. I think I've been thinking it even more lately since I am 29 weeks pregnant. The biggest problem was not having anyone act like they understood. The NICU nurses were cruel to me. My dh was there the whole time, but doesn't understand my feelings and thinks I should just move on. My mother constantly talks about how they saved her and I should be greatful. But, the fact is, she didn't need saving. I can't stand that I can't get my mother to understand that she wasn't, "on death's doorstep" like she told our family. Even the friendly nurse at the birth center that assisted in her birth makes light out of my dd being her first hospital transfer, like it's a good memory or something. It's just sickening how other people can't accept the pain the experience causes. Yes, I was lucky to bring home a healthy baby. But, that doesn't erase what we went through. I honestly don't think I'll ever "get over" the experience. I'm just trying my best not to focus on it during this pregnancy. I am so scared of ended up in the hospital again.

[Lousli]

These last few posts have really hit home. The feelings of not getting over it, the wondering why people were saying congratulations. I felt that too. I'm really having a hard time lately as it is almost her birthday, and the memories are really overwhelming to me. Today we have to have a Synagis shot.

Her birthday party is the 18th, which was the day I went into the hospital. I was sick with a virus that made me throw up, and then on top of it, my irritable uterus went into overdrive and I was contracting every 3 minutes.

I'm sick right now, just with a chest cold, but it is making me think of the hospital experience. I had pulmonary edema and had to be on oxygen. I look at the pics of me in labor and I have a tube in my nose.

Anyway, I'm stressing out right now, and very sad when I think about all the joy a first birthday should bring. I am so happy, and so lucky to have this perfect, healthy (tiny) baby. She is a joy and delight. But will I ever get over the circumstances of her entry into the world?

[Zus]

My NICU experience was very traumatic for me too. I know we were very lucky, my dear girl was in there only for 5 days because she was born with IUGR at term (37 weeks), and they just needed to keep her for observation. Luckily her twin sister weighed a bit heavier and she never needed anything more than 1 night in the incubator in the regular nursery.
I have many wounds from the NICU. One of them is that one nurse kept referring to her as "him" and told me that I could correct her a million times, she would never remember

Also, during her 5 day stay I NEVER, not once, got to speak to a ped!!!!!!! I wanted to, but they were never around or doing more urgent stuff, or whatever. On the 5th day I spoke to a ped assistant, who told me that they *might* transfer her to the regular nursery that day. She promised me that they would tell me when/if they would, and I was patiently waiting in my room.
My mother came to visit me and we decided to go to the cafeteria downstairs to get some lunch, so I brought my other girl to the nursery. The nurse was just dressing a baby, and she said: "this is your baby". Turns out that they transferred her from the NICU to the regular nursery without notifying me!!!!!!!!!!!! They were lucky that I saw her in the nursery, and that I didn't go to the NICU first just to find her missing. I would have raised living hell.

Because I never spoke to a ped (also not afterwards), I don't really know what procedures they did to her. I tried reading her chart, but the handwriting was very unclear. She did have several IVs and she has 2 tiny scar dots on her hand until today.

[ComfyCozy]

horrific

Our oldest was born at 27 weeks. I was 20, we were in college and broke. DD weighed 1 lb 13 oz, and within days had a grade three head bleed on the left side of her brain and a grade one on the right. Her left lung had problems... then her right femur snapped...then the eye doctor neglected her and she was rushed to another hospital 4 hours away, only to lose the vision in her left eye (this was after 3 months). She was intubated for 8 weeks and so we couldn't hold her. Some days we'd go in and they would tell us, "Just look at her. Don't even talk...her heartrate is too high already." The phone would ring in the middle of the night and my heart would drop into my stomach.

Visiting hours were wretched. 4 hours a day, split up, was all you got because "the nurses needed to do their job". 12A-1A, 8A-9A, 4P-5P, and 8P-9P. We couldn't make them all due to our circumstances and I was bitter that they wouldn't work with us so that we could visit at different hours. I had to keep one class, or I'd lose my campus job, and as I said, we were broke. DH was in the same situation.

I remember leaving the hospital the day after having delivered. I was so numb, holding the little polaroid of my baby, and I stood up to get into the wheelchair, and collapsed into my mother's arms in tears. I wanted my baby so badly...I wanted her back where she was supposed to be. We went to visit her, me for the first time, and shock rippled through the nurses' station as what looked like a 15 year old mommy showed up. "YOU'RE the Mom??" "Uh..yes.."

She was red...her mouth was open from being intubated...her movements were jerky. I knew that was my baby...but she felt like a stranger. Didn't matter, though...I loved her, and stroked her head.

I remember not wanting to eat...I just wanted to stay in bed, crying, holding my empty belly. Maybe if I cried hard enough she'd come back in there. No... and the phone would ring, the Dr. with his thick Spanish accent saying something I couldn't understand about her lungs and can they do this procedure..."Okay"... Thank God my sister and BIL-to-be were pediatrics residents and would speak to the Dr. to get it all straight and explain it to us.

Up...down...up...down....it was a nightmare. In the bitterness of dealing with her pitiful vision situation, we had a little bit of sweet--with her transferred to Tulane Medical Center, we got to experience THEIR visitation policies for the last two weeks of her 3 month ordeal--23 hours a day visitation. I was there all day, all night...holding her, rocking her, loving her... and to top it all off, my sister was in the NICU rotation, so she made rounds daily and we got to see her.

She left the NICU at 5lb 10oz and went through 5 years of physical, occupational, and speech therapy. She's 8, almost 9 now. We were told she'd be non-walking, non-talking...etc...and she's proved them wrong. We homeschool, which is good because she's very ADHD, and she's academically ahead. She still has vision in her right eye, but we know she may lose that in early adulthood if her retina detaches again. We, therefore, have a strong devotion to St. Lucy She's back in PT/OT, but not for long, especially since her ADD meds have seemed to help her incredibly with her physical deficiencies.

I don't know what happened to get us there in the first place. I noticed brownish discharge early in my 27th week. After a couple of days it stopped. I called my SIL to ask her opinion, and she said if it continued to the end of the week to call the Dr. Well there's only so much mucus plug, you know? It was a fleeting thought "What if that was my mucus plug?" but I thought "Noooo" and since the discharge had stopped... End of the week, dh and I had relations, and the contractions started before he could even withdraw. I arrived at the hospital within 2 hours (after realizing that yes, this was NOT stopping), and the nurse who checked me said "I don't feel a cervix." I thought "You feel AGAIN, woman!" The next nurse confirmed it. They tipped me upside down to keep her in, shot me up with demerol (to stop the contractions), gave me a shot for the baby's lungs, and tried to keep her in for 48 hours. We got about 17. They wanted to do a section, but waited too long, thank goodness. My body had about pushed her out by the time the Dr. came in.

A priest was on hand to baptize her (it was my mother's brave request to me) and they prepared to whisk her off to the hosp. with the NICU. I got one glimpse of her very quickly...enough to say "Hi! It's Mama..." She popped her eyes open and they whisked her off.

I'm thankful, so thankful, for this child. I wouldn't wish what we went through on my worst enemy. I've since had 4 full-term babies.

CC

[sweetpeasmom]

s for everyone. I don't think the experience will fade quickly. I still think of it. I still get irked at what they did. I'm still pissed that they gave my little girl who was only about 36 wks gestation cereal I'm still pissed that they had her on a feeding schedule, restricting her feeds, whilst i'm holding her and she's crying and can't rest because she's hungry but then told i need to leave because of doctor's rounds. So therefore i need to leave my crying, hungry, baby all alone in her crib

CC- you know i was told that she's most likely be a very late walker but her she is not even 12 mths adjusted age, already standing and taking some steps. She's been proving them wrong right from the get go I also noticed some discharge and that was the only indication i had, if i had ignored it I probably would have lost her since i wasn't contracting at all.

Michal- i also hardly every spoke to the ped's there and i was there for 3 1/2 months. I saw them first about a few days after delivery and that was it until about a few weeks before discharge and that was only because i refused the hep B shot and they "needed" to talk to me, yeah whatever! grrrr

leaving the hospital after birth was just so hard, leaving without your baby just wasn'r fair, then seeing daily all these new parents leaving with their babies.

[Lousli]

It is Hazel's first birthday tommorrow. I wanted to take her to the NICU to show them how well she is doing (18 pounds 1 ounce last week!), but we both have a cold, and I don't want to endanger those little babies.

I wanted to let you all know that there is a new section of the pregnancy board called pregnancy resources. It was created because I specifically asked for a sticky to be placed about signs of preterm labor. If you have any information to post about preterm labor, please go to the new section and post there!

[Mommy!Mommy!Mommy!]

My BG twins were born at 36 weeks (full term for twins) by C section. DS was born first and went into my husbands arms. He watched his sister being born. As soon as she was born she had respritory problems. They rushed her up to the NICU. She was hooked up to oxygen, machines and IV. About two hours later I got to see her in her isolette and touch her foot. My recovery bed knocked her IV out of her little hand. In my room I tried to put her brother on the breast but he was too upset to try. The backdrop for this was his hysterical crying. We had to keep suctioning out his mucus and hold him up for the rest of the night. I didn't get to hold my DD for 24 hours after her birth when I was able to go down and visit her. Her brother didn't stop crying unless he fell asleep, until I put them together in the same blanket. Once she held him in her arms she noticably started to get better. DD had a hard time latching due to unauthorized tube feeding she received in the NICU but with lots of work we corrected that. There were a few other things that happened during that hospital stay that left a bad taste in my mouth but I know we were very lucky. I cried remembering this and still I wish I had done things differently at the time. Fighting to put DS in with DD would have helped but I couldn't see that at the time. Fear for DD and not understanding the relationship between some twins made me hold onto DS. I couldn't see past the moment.

After we were discharged we had to come back for almost daily tests, many times I would pass by the NICU. For that month I saw some of the same exhausted mothers sitting, sleeping, walking the halls, pumping, sitting with their spouses just staring. I saw that though things were aweful in the beginning, we were and are truly blessed.

[sweetpeasmom]

Happy belated birthday Hazel