Parents of former NICU or Preemie babies ??? - Page 5

[chrfath]

Wow, thanks for starting this thread. Very timely for me to have found it today too.

My little Veronica is a graduate of both the NICU and the PICU. I won't post our whole story today because it still just gets me to upset.

Veronica was born on her due date super healthy great pregnancy. But she has Down syndrome and a CHD. She spent 4 days in the NICU.

Today is the one year anniversary of her open heart surgery. She spent 12 days in the PICU.

Now we are facing another open heart surgery and are meeting with the surgeon on monday. I just hate thinking about it.

I know what you all mean about scars. Veronica has "vampire bites" on her neck, foot, groin, a "lady bug" from her chesttube, and of course her "zipper".

She is pretty far behind developmentally but moving forward so that is all that matters. She is still pretty small I don't even know if she has doubled her birth weight yet.

I am glad to have found you mama's. I have been feeling very alone lately. I remember when she was first born thinking now we are one of those families that I used to feel sorry for and said I can't imagine having _____. but now I don't have to imagine I have to figure out how to deal with it. My friends who try to be nice but can't think of any thing to say so they comment on how long her hair is getting(that she looks like she has a comb over- NICE) and tell there kids not to tell me how much better their baby is doing than Veronica. There needs to be some sort of handbook. Or maybe I need to stop telling people with babies it is hard for me.

Ah, I am rambleing and just having another one of my really bad days. Sorry.

I do have to add...I just wish my friends and everyone could get to meet Veronica and really know her. She is just the sweetest little thing. She is always happy and smiling. She is the light of our lives and a real joy. I wouldn't trade her for the world.

[hadleys_mom]

I have tried several times to post to this thread but every time I can't bring myself to. I guess my emotions are still too raw.

As I read through all the posts, I'm flooded once again with the emotions the NICU produced. My daughter was born at 23 weeks due to unstoppable preterm labor, weighing in at a might 1 pound 5 ounces. Her birthday was the saddest day of my life. I remember during her delivery the doctor told me to push and I faked it. I thought there is no way I am going to assist in forcing this little life out of me. I was able to see her for just a moment before they took her to the NICU. I was told at best she had a 40% chance of survival and if she did make it, most likely she would have some major health problems. It was more than a week before we were able to touch her and about a month before we could hold her. We spent 116 days on a roller coaster of emotions. But some amazing things happened during that time. How many people can say they watched their baby develop nipples? Three days before my due date, DD came home and other than some eye issues, has been healthy and gaining weight wonderfully. She'll be 9 months on Saturday and weighs 15 pounds.

We had a wonderful NICU staff that encouraged use to hold as often as possible, once she was healthy enough and to breastfeed. (Though after 110 days of pumping, my milk was no where to be found.) I feel for those moms that did not have a positive NICU staff, that would make an awful situation unbearable.

I have not come to terms yet with the loss of a "perfect" pregnancy and birth. I don't even know what the third trimester is like! I long to be pregnant again but am terrified of another NICU experience. Finding support is probably the hardest thing now a days since unless you've gone through the NICU experience or have a special needs child, most people don't understand what it is like.

Does anyone else struggle with feeling personally responsible for their babies health problems as a result of their own body failing?

Nap time is over,
Michele

[eilonwy]

Originally Posted by hadleys_mom

Does anyone else struggle with feeling personally responsible for their babies health problems as a result of their own body failing?

I feel this way too, just because I have yet to experience the perfect, easy, natural pregnancy, labor, delivery, that people are always raving about. Eli went to the NICU, there's something wrong with Rivkah's kidneys (though it's looking more and more like something we'll just watch)... It makes me feel a bit defective. Especially with my water breaking the way it does. It's like, my amniotic sac doesn't actually "break" it sort of slowly disolves and the fluid leaks out so slowly that I can barely tell it's happend (and the doctors can't tell at all, until they do an ultrasound and see that the fluid is gone). Why me, what am I doing wrong? This time, I took in gallons of vitamin C, hoping that my sac would remain intact, and it didn't work, it melted away just like last time. Only this time, I didn't have contractions, I didn't go into labor at all. It messes with my head.

Your baby had a much rougher time of it than mine did, but I can still relate to how you're feeling.

[clothlovinmama]

my son Jack was born at 34 weeks unexpectidly..i was actaully induced after my water broke. He was fine and didnt need the NICU, however because of my previous "preemie" baby they kept a close eye on my cervical length during my pregnancy with grace and it kept getting shorter and shorter. At 19 weeks they sent me to a perinatoligist to see about getting a cerclage put in. When i got there they said i was 100% effaced and 1-2 cm dilated and there was nothing to stich
he said he was sorry, but i was too far along to help and to drive home the 2 hrs and call my OB
My ob admitted me, on Aug 12th of last year and there i stayed upside down in trundellenburgh (sp?) and full of drugs until oct 18th when Grace was born at 30 weeks. She was 3 lbs 12 oz and 17 inches long. She stayed in the NICU A little over a month and now at 9 months is holding her own.

I was seeing an OB and a HB midwive together...had i made it to 37 weeks, she would have been born at home. I hate to seem greedy since i am lucky to even HAVE her...but i morn my "dream birth". She is prob my last baby and that saddens me as well
I am also upset by what i did to jack. He was a nursing 2 yr old at the time who was used to being home with me all the time..in fact he had NEVER had a babysitter up until that point. He needed to start full time daycare the next day and had a HORRIBLE HORRIBLE adjsutment.
He refused to eat, drink, play or use the bathroom the WHOLE day and all he did was cry. They ended up putting me on zoloft for my horrible depression.

I have to stop writing now..i am too emotional...
i'll continue later

[prudies]

I've been looking for a thread like this! Elliott was born at 34 weeks. One day I went to the OB for my regular appointment, the next thing I knew I was in the hospital. I had pre-eclampsia. My blood pressure was very high, and I was completely puffy. I felt like a mess. They gave me a steroid injection for Elliott's lungs, and an iv full of magnesium to control the blood pressure. I felt like crap for two days. Finally, they delivered him by c-section Friday morning.

I definitely felt guilty that my problem forced him out early. Luckily, he had no major problems. He stayed in the NICU for two weeks, to gain weight primarily. I was torn between wanting to spend every minute with him, and wanting to rest.

Whenever we're out of the house and people say, he's so tiny! Or, how many days old is he? (He's 8 weeks!) I feel incredibly protective.

We had and, to a certain extent, have a lot of problems with breastfeeding. Finding a good LC changed everything. He's finally on now, but I still have to give him bottles because he wasn't gaining. My next challenge will be to slowly remove the bottles.

Sometimes I think about whether or not we'll have more kids, and whether I'll ever be able to give birth naturally.

[BubbiesMami]

Well I know this is for former NICU or preemie babies but I didnt find anything for current so here I am.
My daughter Mia was born June 17th 04 at 24 weeks. She weighed in at 1lb 3oz. She is now almost 6 weeks old. This is by far the worst thing for a parent to endure. I keep trying to tell myself it's making me stronger but every time I walk into the NICU to see my baby my knees get weak and every phone call I get from the hospital makes me feel like I am going to pass out. The emotions of this roller coaster ride is very draining.
She is now 1lb 12oz. Her major issue is lung problems. She was just put back on the oscillator last night, her lungs are in bad shape. She has a cyst on her lung that is getting bigger and she is battling high CO2 levels in her blood. She has had no brain bleeds. She had a PDA that closed with her first dose of meds. She had many seizures and for now is on long term phenobarbitol (?sp) and is also on morphine to help relax her. They said she is too active and aggrivated so the phenobarb is helping to calm her down. She has had 2 rounds (3 days each round) of steriods. She also had the surfacant when she was born a total of 4 doses. She also battled low blood sugars which she has pulled through and also low blood pressures. She hasnt needed meds for her blood pressure for almost a week.
I know she has a very long road ahead of her. I would give anything to hold her. They keep telling me maybe next week. My arms feel so empty.
This might sound weird but how many of you felt like you wanted to get pregnant again? I keep thinking maybe this time nothing will go wrong, maybe I would be able to carry longer. My DH said I just feel that way because I have HAD a baby but the baby isnt here with us. I guess I will feel more like a mommy when I can hold her. She IS my last baby. I have 2 other kids and actually signed a consent form to have my tubes tied but ended up delivery in a different hospital and they would NOT tie my tubes. They said they couldnt because of the situation. I know I cant get pregnant again but what I wouldnt give to be able to have a normal pregnancy. Mia was my 9th pregnancy. I had a 24 weeker 14 years ago who weighed in at 1lb 4oz but he only survived 22 hours. I had my DD at 35 weeks she was 5lb 5oz and my DS at 36 weeks he was 5lb 15oz. The other pregnancies were miscarriages between my 4th and 5th month. My 2 kids that I do have were hellish pregnancies. Mia's pregnancy was horrible too. Here I sit no longer pregnant and with a micro preemie WHY would I even THINK about wanting to get pregnant again?! I am nuts!
Well that is me and my story. I made a web page for Mia that ya'll can check out HERE

[mamatojade]

Lori - I am so sorry that you are going through this after such a difficult series of pregnancies and losses.

Nobody can understand what you are going through better than those of us who have been there with you.

Hugs and prayers for you and your family.

Lisa

[Taosmama]

to all of you for sharing your stories, and prayers to those of you who are going thru this now.

Dd was born by semi-emergent c/s at 31 weeks 4 days. I had been in the hospital the greater part of a month for a placenta previa, bleeding, and finally preterm labor. She was in the NICU for 5 weeks, and did very well, but it was still a nightmare as all you know. Our NICU was good about letting me kangaroo her, nurse her, etc., but some of the nurses were horrendous - one told me my milk was too rich and that was why dd was vomiting her first feeds! Another gave another mom a hard time about holding her baby, which was especially sad because she was commuting from an hour away and couldn't be at the hospital much. My biggest complaint is about the LCs - they were incredibly good at getting moms to pump, but not so good about actually helping babies to nurse! Before I left the hospital, one told me that I'd endanger my child if I just nursed her at home!!! We were very lucky to get the breastfeeding thing down on our own - in part because dd "got it", and also because I had previously nursed ds. Still had tons of trouble with thrush because of all the antibiotics both of us had been on.

I have a lot of guilt too about leaving ds. Thank God, he weaned himself at 19 mos, just a month or 2 before I was first hospitalized, but the separation was so hard on both of us. Dh was amazing through the whole thing. He took almost 2 mos off from work, basically moved down with ds to the hospital where we were, and helped keep us all together. (The NICU was 3 hours from our home - I had left home at 27 weeks pregnant and was gone for 3 months!)

Dd is now an amazing CHUNKY (!) 19 mo old. Still nursing! She's a very spirited child and the world's worst sleeper, which I wonder if it has to do with her early experiences.

I'm very grateful that she is so healthy. No more pregnancies for us, tho' - my chances of having another previa are extremely high, and I never ever want to go thru all that again!

[mamatojade]

Paige,

What does semi-emergent mean? Sort of an emergency or a baby who is partially vaginally delivered?

Thanks,

Lisa

[Taosmama]

Hi Lisa,
What I meant was that it was urgent but not emergent, ie, I didn't have to have general anesthesia. Basically, I had started bleeding again (right after dh had brought me a piece of key lime pie), and the doctor said, the baby's stable, you're stable for now, it's time to deliver you. Vag delivery wasn't an option because of the previa, my placenta was covering part of my cervix, and dd was footling breech to boot. I tried and tried to negotiate one more day with the doctor but no go. In retrospect, it was a huge relief to have had it all over with, even tho' I would have liked her to stay inside a few days more.

[Dawnalex]

Its soo nice to finally find a Preemie thread on here LOL
Landon was born 6-12 at 34 wks after 4 wks of hosp bedrest for pre-term labor. He was 5 lbs 3 oz.
He was able to come home after 2 wks in the NICU, then he ended up back with a cold for a week.
His due date was on the 20th....he is still on oxygen at 1/4 liter and he has been having problems with his bowels, hopefully it can work itself out.
He has just started BF YAY....this is the biggest milestone in my mind....he started on his due date. Before that he would not eat very well and miss two feedings..but now hes doing great he loves his mommys booby LOL..

Last wk he weighed 7 lbs 6 oz, the public health nurse comes tommorow to see how much he weighs.

I can definaly say that the NICU was hard, really hard especially because i had already been in the hosp for 4 wks and i couldnt go home. We live 4 hrs from the hospital. So while he was in the NICU i stayed in a room and went back and forth to feed him every chance they let me.

How do you guys deal being home? I am having a hard time not worrying about every little thing...Like him not pooping..
They did an x-ray on thu and he was FULL of gas and poop..i think there going to do another this week to make sure all the poops out.
and his oxygen is hard im always worried about that. Especially because he fluxiates so much.
Well hes hungry i gotta go

[mamadawg]

Checking in

Hello,

I'm just checking in. My twin girls were born at 32 weeks, 6 days and spent exactly 2 weeks in the NICU. I had thretened to deliver at 26 weeks, so they gave me steroid shots then. As a result, the girls didn't have to go on oxygen. They were extremely healthy for being 7 weeks premature.

The NICU experience was horrible, for the most part. I spent every day at their bedside from about 9am-10pm. I was there so much that if I left to go to the bathroom or get something to eat in the cafeteria, the nurses would get worried about where I was. I pumped religiously for them while they were in the hospital 8-10 times a day. They were pretty jaundiced the first few days and the doctors kept threatening to put them under the lights, but in the end their biliruben levels went down on their own. I credit that to them getting breast milk for most of their meals (about 90%). I had some really horrible NICU nurses. One nurse bossed me and dh around so much that we just learned to ignore everything she said. She treated us like complete idiots--she would supervise us when we changed the girls' diapers, she gave us a lengthy lecture about how to make sure to put more clothes on the girls when they got cold, and take more off when they got warm We had serious problems with breastfeeding and while the girls were in the hospital they were not very good latchers. Many of the NICU nurses were not very encouraging about breastfeeding. I did have a couple of really good nurses who were very encouraging about breastfeeding (one was studying to become a LC) and one pulled dh and I aside one night and told us what great parents we were and how she loved watching us with our girls.

Having babies in the NICU was something that I had expected because I had such a difficult pregnancy, but nothing could have prepared me for it. I didn't know how empty I would feel when I got to go home from the hospital without my babies. When I was home, away from the girls, I couldn't do anything. All I could do was think of them and I felt really uneasy being away from them. I missed them terribly and I often cried on my way home from the hospital. They finally came home exactly two weeks after they were born--5 weeks before my 40 week due date.

We had serious difficulty nursing. It took them three months to learn to latch, suck & swallow properly. I spent countless hours sitting on the couch trying to get them to nurse. It was horrible. I'd have two babies crying at my breasts, I'd be crying, dh trying to console me, the dog freaked out because the house was in chaos. Ugh. It was awful. But thankfully, we finally got it and now they're both little booby addicts.

My girls are 10 months old today (yay!). I'm so thankful to have healthy, happy, beautiful girls. Parenting twins is the hardest thing I've ever done, but when things get really hairy I try to remind myself of the time they were in the hospital and how all I wanted was for them to come home. I do admit that there are days when we do wish we could return them to the hospital, if only for a night.

One of the hardest things about having preemies in the beginning was having newborns for so much longer than normal. They were -5 weeks old (adjusted) when they came home, so we had newborns (and all the challenges that come with having newborns--especially 2) for about 6 weeks longer than most people do. We didn't get a good night's sleep until the girls were at least 6 months old.

I'm glad I found this thread. I know it's pretty old, but it seems to still be active. I feel a special kinship with other mamas who have gone through similar experiences.

[eilonwy]

So here's a question:

Does anyone get nervous when they think about having another child? I know that while I was pregnant with Rivkah I worried about doing the NICU thing again... we had a very nice NICU, but I'd be perfectly content never to see the inside of it again, kwim? It seemed like it was unlikely she'd go to NICU at all, until we found out about her kidneys and then it seemed suddenly very possible. I was so relieved that I got to keep her in my room that she only went into her bassinet when I was in the shower; I kept her in my arms almost the entire time.

Now Rivkah is here, and doing well but she still needs to be watched carefully. I've been thinking about #3 and wondering about the chances of something going wrong again. Are these really random events, or is *something* going to go wrong with every child I have? Is it me, or is it fate? The things that went wrong with Eli's delivery were unlikely to happen again, and the things that went wrong with Rivkah's, while entirely different, are also unlikely to happen again... but what about all the other things that might happen?

[leavesarebrown]

Thank you all for your stories. I've had to take crying breaks in between to get through it all. And we had a really good family discussion last night about our feelings about Talia's hospitalization that was really good for everyone (she's a year and a half now). My 4 1/2 yr old was more open about his feelings about it than he has been to date, and that was VERY encouraging, because the effect of all of this on him has been one of my biggest concerns (major separation anxiety still).

Tali was born at home but had a blue spell and went limp at the ped day two when they did her PKU heel stick. She came to with vigorous stimulation, and appeared well after that, but they sent us straight to ER for further testing to see what was up. In ER she had a couple more spells, and they immediately ran every test in the book including spinal taps, and arterial blood draws, etc. She had the spells WHEN they were doing the tests, but that didn't stop them. I understand they needed to try to find out what was up, but it was really hard to see her well appearing when she was left alone but distressed to the point of stopping breathing and heart decels when she was being poked and prodded, like that extra stress is what was putting her over the edge, you know?

She was put in PICU rather than NICU. I'm still not sure why. Some said 'cause she was term date-wise (37 1/2 weeks, 7 lbs 2 oz) but she was clearly premature by other signs--tons of vernix, not closed umbilical site, open genitals. Others think it was because she was a home birth (therefore not "sterile enough?). Or maybe NICU was simply already full. I don't know if that made it better or worse for us, but reading some of these stories, I'm guessing not worse except for lack of staff experienced in putting in neonate IVs, etc. (which made for many blown lines and "trials" to get the new ones in).

Of course some staff had attitudes about home birth and about breastfeeding. But I was allowed to stay, and did the whole week she was there. They found severe reflux and sent us home on meds and oxygen and a monitor which we were able to stop using within days, thank God. I'd already lost my mind. And the monitor was making it impossible to co-sleep. She has continued to choke when she refluxes (unlike "most" she hasn't outgrown her reflux by 1 1/2, so she may have it for life).

One of the hardest things for me were separation from my then 3 yr old who had never been apart from me for so long, and who was completely unprepared for any separation, even for the birth since it was a home birth. He couldn't even come see her in the hospital since he had a cold. Another was not knowing what was going on. Communication was horrible. I seriously thought she was going to die. And when she found out she was fine, and staff talked about reflux being something she would just grow out of and basically something she would have survived even without all the intervention, that made me feel like I'd just been through a concentration camp, made to watch people torture my daughter powerless to do anything about it. I know this reaction is a bit extreme and in part based on having been a battered and abused child when I was little. But it is hard to imagine anyone not feeling tortured in a situation like that.

I had preterm labor with my first also, and have had three miscarriages, so I have a hard time imagining another "try", let alone more than one, but we have both sensed another spirit "waiting" for us to get ready for him. It will be a while, though. My own sanity can't take another too soon. Pregnancy is difficult enough, let alone as others have mentioned the risk of premature birth again. It makes me really glad that our first hung on for that extra month (I was at the hospital a month before his EDD, I was on bedrest for two weeks, then he held on for two more and was born on his EDD. I was 3-4 cm for a month.)

Someone mentioned post traumatic stress and depression. People just don't get it if they haven't been through it. I don't feel brave or strong. I was an absolute basket case. And not just while I was in the hospital. The first counselor I went to in an attempt to deal with my PTS took one look at Talia and decided she was clearly fine so I just needed to get over it and not become a "smother mother." And when I posted to MDC for support in the homebirth section, I got lots of criticism from OB and NICU nurses for not being grateful for everything the hospital staff did for me, and for my relatively healthy daughter.

A couple of you have also talked about guilt. It was major for me--not because of the home birth as most people assume. Her problems had nothing to do with home birth. Actually, she would likely have been "taken" even sooner if we'd had a traditional OB. My guilt was in having my membranes stripped at 5 cm and then later my water broken (at 8 cm). Maybe if I hadn't pushed her, I'd have stayed at 5 cm for longer, maybe even long enough to have prevented her problems. After all, my first was at 3-4 cm for a month! On top of that, I was an induced baby myself, and always felt like I couldn't do anything on my mom's timetable. So I never wanted to do that to any of my kids.

But I mostly feel guilty for wondering if another miscarriage wouldn't have been better, given how much more stress and mourning the hospitalization caused than the miscarriages did. I'd always seen miscarriage as natures way of stopping a pregnancy I wasn't ready for or that wasn't healthy. So that made people's comments about "well at least she's healthy now!" really hard to take, because I was lastingly impacted by her hospitalization--even to the extent that it affected the quality of my mothering. Does this resonate with anyone else?

[leavesarebrown]

I know, I've been too long already, but...

One more thing--something I found really helpful was creating a journal just about Tali's hospitalization. I made a collage for the cover (it's just a 3-ring NB). I put the notes I made while in the hospital and after follow-up visits, any time I wrote about the experience, and copies of posts I put on MDC, information I got about ALTEs (what they used to call near-SIDS, which is what she had) and reflux either from docs or the internet, copies of her medical records... And a hospital map, that I got when I took my son back to see where Tali and mom had been that week... It has been a really good thing to have, and healing to make. I have little journals for each of my miscarried babies, too. I keep them with Tali and Reuben's pregnancy journals.

I took pics while in the hospital, too (wish I'd taken more now actually), but at first couldn't even look at them, or put them in the photo album. They're in the album now, and I've even looked through it with the kids to talk about it when they seem to want to. That's been another good thing (but also emotional, too). Though I must say it gets better each time I deal more with it.

Oh, I also wanted to say I have a really good counselor now who has been MUCH more understanding and willing to actually talk about and help me deal with the hospitalization and how it effected me. She's going to do a session w/ neurolinguistic programming--I don't really know much about it but apparently can help clear the emotional toll of traumatic experiences thorugh some form of hypnosis. I need to read more about it, but I'll let you all know if I find it helpful.

[BelieverOTC]

Hello everyone. What a great idea to start such a thread.

My son was NOT a preemie. But was in the NICU ( here it is called PICU) for 5 days and in a private room for an extra 5 days.

I was not expecting this; we had a good pregnancy, and a prefectly swift and great homebirth. But, day 4 after birth, my milk was still not in, and my son's voice was raspy. The midwife came on Jan 1, new years. And she told us that we really needed to take the baby to get checked. No peds offices were open, so we had to go to the emergency room. When we got there he had a fever so they had to run tons of tests. After about 5 hours there, they knew nothing and sent us to another hospital in an ambulance. Well when we got there, some doctors looked at him and said he had to go to P(NICU). So they took him there at about 11 PM, we didnt see him until 7 AM the next morning. He was hooked up to all kinds of things. He didn't open his eyes for 4 1/2 days.
Well they couldnt tell us what was wrong with him, only that he was dehydrated. So on day 5 they moved us to a private room, but were constantly in checking on his heart beat and things. And they came in 4 to 5 times during the day and another 4 to 5 times at night to poke him and get blood. They had a hard time finding veins.. Our son was 8 lb 4 oz when he was born, in that hospital he went down to 6 lb before we got out of there.

Now, he is 7 months old, about 15 lbs.. and SOO strong. I am so thankful.. But sometimes, i will be nursing him and just start thinking about how he was so weak back then, couldnt even open his eyes... and I just about cry.
I won't even go into how bad they treated us because we had a homebirth and because we didn't want vaccinations. But I will say that we refused the Hep B shot that they wanted to give him when HE WAS ILL, because it could have been very dangerous, yet they said .. "Oh the risks are minimal"

ANd the pumping... what a terrible thing... I wanted my baby, not some pump... and then you hardly get ANYTHINg out of there at first... geesh..
and now he can nurse and be finished in like 10 minutes tops.

I feel for all of you who had to be in the NICU longer, I still have nightmares and had it easier than most of you.

Thank you all, this is very encouraging

[wendygrace]

I don't think I've replied although I have been following for quite some time. Its been hard for me as I spent four months in the NICU and another 2 in PICU appr. For those who wonder about the NICU/PICU difference...NICU's are generally for babies directly from delivery room to ICU. PICU's are for any child, infant through age 18, who were not delivered and immediately placed in th ICU. Why that is is usually germs. Hospitals cultivate their own germs and most NICU's are typically full of preemies who have a hard enough time dealing with the germs that are already there. Dealing with foreign germs is more difficult. Usually, although not always, if a child is transferred from one hospital to another, the child is transferred down to PICU.

HTH

Anyways, about us. Ds, 2, was born with a condition called an Omphalocele. He was full-term, emergency c-section, 9lbs 10 oz. An omphalocele is when the abdominal cavity does not close correctly and the umbilical cord contains the abdominal contents. My son's contained liver, intestines, kidneys, stomach and "who knows what else" . He was immediately prepped for surgery and was intubated. I won't go into all the hell we went through but will say that the hospital screwed up, he ended up septic, was dying and were told to pull his tubes. We were getting ready to and went to our online community to let them know and called our parents to come say good-bye. When we got back to his bedside, there was a wonderful nurse angel at his bedside who had somehow woken his spirit to live and he was fighting back. We waited and waited and he came back to us. He's gone through several surgeries and still has his organs out covered in skin grafts. We finally had enough with our original hospital, who threatened us with calling the state (funny since I work for them! ) for not putting in a tracheotomy and we changed hospitals. They extubated him a month later but not with much damage from the first hospital. Ds has communicating hydrocephalus, brain atrophy, chronic and restrictive lung disease, liver and kidney disease, he had "overgrowth syndrome" because he was born so big and currently is near Failure to Thrive . He was on oxygen until his first birthday (stinker was completely off his o2 a day after his birthday party) and was on an NG tube until 16 months...when we finally decided to ignore the doctors and force him to eat. He has sustained his weight and has finally started to inch up! Yeah! He was discharged from the hospital with over 16 medications and we took him off all of them, on our own, within a few months. His reflux meds were causing high blood pressure, his high blood pressure was causing kidney probs, his kidney meds were causing liver issues...well, you get the picture.

I have become a medical dictionary and have taken control of our son's conditions. We stopped vaxing him once we realized that he was spacing after his DTaP shots. We discovered a severe allergy to egg (respiratory distress), soy (severe eczema) and peanuts. He was on soy formula for quite a while and really screwed up his system. The doctors just shake their heads with us cuz we don't take their crap anymore. (can I say that?)

Did I mention the PICU wouldn't let us go home without signing a Do Not Rescuitate order? When we got him home, we realized that they had him on too little oxygen and he was overcompensating and would get tired so his lungs with spasm. I hate doctors and I hate hospitals. Ugh!

We do love our pediatrician though. He just spends our doctor's appointments shaking his head and asking us what new thing we're doing now.

We did end up having another little baby. Dd is 19 months younger than her brother. She was a "kinda accident". I delivered with midwives. One good thing about going through all this is that it woke me up to alternatives that I may have never done and/or would have never convinced my dh to try. Dd is not immunized and we didn't start her on food until this week (6m 1w) and we're taking it slow.

Sorry for the book.

[chilipepper]

How timely as my little NICU babe just turned 4....

I delivered at home as planned with an extremly experienced midwife at 38 weeks. I had an uneventful pregnancy and labor delivery.
As my son was crowning I started to worry and vocalize my worry that something was wronge with him. I knew it was ridiculous he wasn't even born yet but at the same time I had a very strong mothers knowing.
My sweetheart was born 8 pounds even 2 weeks early at home.
He did not cry and apreared to go right to sleep after birth, never opend his eyes, did not root to nurse. I KNEW something was wronge but my midwife assured me that he was fine and reminded me how active he was during my entire 9 hour labor.
I went to take a shower and was told while I was away he woke, screamed and pitched a grand fit. This did make me feel better but my heart was sick with worry.
His apprearence was fine, his apgar an 8, his lungs were clear his heartbeat reg. and steady. I have a nursing background the rational side of me said he was fine but the nagging would not go away.
I had labored thorugh out the night and fell asleep an hour or so after he was born. I woke to the sound of him grunting between breaths ( he was "asleep" in my arms) He was also turning blue between some of his breaths. I called my midwife who came right away with O2. (she had gone home it was hours after the birth) The grunting stopped while on O2 but he did not wake and could not be woke so she advised we go see the ped.
We drove with O2 tank to the ped about 40 min away she advised my sweet babe be admitted to the local hospital I was no ok with. This hospital is known for issues and non experienced staff. So we chose to self transfer to the bigger childrens hospital. The ped. refused to call an ambulence for transport because she had no practicing rights at the children's hospital. But something in my heart said my baby needed to be there.
I sat in the back seat while my now xh drove. We ran out of O2 apporx 10 from the ER entrence. My son stopped breathing and had no pulse in his car seat so I did CPR in the back seat while my x drove as fast as he could to the ER. ( thank god for my nursing/medical background)
My son arrived at the ER dead....I ran down the hall with him in my arms screaming "my baby is dead someone please help me" he was taken from me and I collapsed in the hallway out side the triage room. I had a fabulous receptionist who called social services and stayed with me and just let me cry and sob on her until I was just raking in sobs and was delerious with grief and emotion.
After several attempts they brought my son back and put him on a vent. After a few hours he was stable enough to transfer to NICU. The first 24 hours were touch and go they were convinced he had an infection my midwife had other ideas of what could be wronge. After the 2nd day he had more tests and he was found to be suffering from persistant fetal circulation that had lead to pulmonary hypertension and cardiac arrest. Basically what had happened was at birth his circ. system didn't switch to being outside the womb so the valve between the heart and lungs never opened. The heart pumps blood agaist this "wall" and enlarges because the blood is going no where untill the newborn goes into cardiac arrest and ... in the case of my son because no one listened to me and it wasn't caught early enough dies. The only " cure" is O2 support and waiting for the circ. system to swtich and the valve to open. We were lucky that we caught it and got him medical treatment as he was going into cardiac arrest a few more min and my son would not be with me now.
Once diagnosed I was told the good news, most newborns circ. "switch" in the first 72 hours, bad news if they don't do it then there is a less then 10% chance that they will and there is nothing to do but wait and then decide to leave on the life support or turn it off.
In the NICU my son could not be held , he O2 stats went down, he could not be touched, exposed to light, noise, ect. Any bit of stim. would send his O2 stats down. He was on a vent for the first day and then CPAP O2 for the days after but always witht he threat of needed the vent again. I sat with him from 8 am to 8pm except shft change in a dark, windowless, noiseless room, watching his monitor and hoping he would come out of his " coma". The 72 hour mark came and went and I was advised every morning that he odds were agaisnt us, soon he would need more life support, kidney support, ECHMO for the heart lungs ect to cont his "life". During this time my exh ( at the time my husband) could not handle what was happeneing so he went back to work and to stay with him family so he could be supported, this left me completly alone 60 miles from home, him and my elder son to decide on my own what to do with my sweet baby. I chose to keep him on the CPAP but not pursue further life support options because I felt at that point they would be futile. On the night of the 5th day I was told that in the morning my baby would need to be put on by-pass machines as his heart was damanged by the near cardiac arrest episode and days of being in this state.
I held my son despite the falling O2 level and told him that he had a whole family who loved him and wanted him but he had to choose if he was to be with us or to go because we could not stay in this state of limbo. I then left the hospital for the first time in 5 days because it was my elder sons birthday.
When I returned it was to a ringing phone in my room (they set up a transitional home for me as I lived an hour away and my son could have died at any time, thank goodness for them ) On the phone was my babies primary nurse who I had grown close to, she said my sons eyes were open for the first time and he was rooting and pissed that his mama wasn't there. I rushed right over and met my son for the first time. His circ. system had switched, the valve had opened, despite the odds at day 5 almost 6.
We stayed at the hospital another 4 long days while I arranged home health care for me son. After returning home he recieved 7 weeks of home health care. During that time I pumped every 2 hours 24 hours a day to provide breat milk for his nose tube. At 7 weeks his suck was stronge enough for the first time to attempt the breasts but it still took us months to really nurse full time.
Over the past four years we have faced a few medical challeges due to his post birth trauma.
I suffered horrible PTSD , I could not reenter that hospital , I had nighmare of doing CPR on my son and running that long hall screaming for help. My marraige fell apart and I am now a single mother to both my sons.
My little NICU babe had heart damage from his birth illness that self resloved just one month short of schedualed open heart surgery. He was deaf until last sept when we were able to correct his hearing through surgery. He suffers from bi-pulmonry dysplasia from the life support he received at birth a progressive lung cond.ition . At this point it is controlled by meds and regular visits to a ped. pulomo. His speach is behind due to his hearing loss.
BUT my son is happy, and in so many ways healthy. He nursed until he was 3 1/2 . He is expected to regain complete control of his speech in time and it is coming in leaps and boundes. Mentally he is fine which is a miracle given the amount of time he went with out proper O2. I know he chose to stay with us and I am forever grateful.
I am terrified of having more children. My NICU experience still haunts me.

[leavesarebrown]

Chilipepper--thank you for sharing your story. Are there things you have found helpful for the PTS?

Wendygrace--thanks for the PICU/NICU clarification. We did stuff AMA, too, that really benefitted Talia. Two providers "quit" on us because of it, though (one doc, one nurse). The doc because I resumed nursing once we knew there was no perforation in her esophogus. The nurse because she was uncomfortable being in the room while I nursed, and the doc said we had to have supervision initially. So she said get someone else. HOW CAN THIS PERSON BE A NURSE???

As far as pumping goes, I had to ask for a pump myself when they said nothing by mouth (until the upper GI the next day) and the nurse didn't know ANYTHING about even setting the pump up so I had to try to figure it out myself. And she'd taken it out of the bag for me, so the instructions got thrown away. So I had to throw out all of her collostrum since it hadn't been collected right (I hadn't been cleaning the equipment between pumps, and I didn't want to risk hospital germs after we were discharged). Then there was the nurse who didn't bring my pumped milk down for the upper GI so I'm sure she had formula for that test. Grrr... I know that's a little thing compared to everything else everyone's talking about here, but for me it was really hard to throw out all that irreplacable collostrum that I'd pumped under such duress and especially knowing all the antibodies & etc it contained that preemies especially need. Who knows, maybe Tali wouldn't drink it because of all the stress hormones in it--or the hospital smell everyone talks about. (Smart baby.)

[Taosmama]

Chili pepper,
I cried reading your story. What an awful awful thing to go thru. I'm so glad your ds is with you today and doing so well.

My heart really goes out to those of you who had homebirths and ended up at the hospital with your babes. What a shock it is, and I know that often hospital staff really look down on homebirthers. I was already in the hospital hooked up to IVs, magnesium, etc, so I knew my experience was going to be highly medicalized! We also got to talk to a really wonderful NICU doctor before dd was born. (By the way, my point is not at all that homebirths are dangerous!!)

I should also admit my disclaimer that the actual NICU experience itself wasn't that bad, for several reasons - I do think the doctors and nurses were overall pretty good, but also, I'm a doctor myself, only family practice, but I'm sure that affected how we were treated. At least with the nurses, I think some of them were too intimidated to mess with me! Actually, tho', I'm very sensitive about not wanting special treatment and favors, so I didn't speak up too much over little things, and I tried very hard not to come off as a demanding pain in the butt M.D.

One of dd's first nurses, when she was still in the main NICU, tried to use formula on her first instead of her colostrum. I was livid - but talked to one of the LCs who intervened. That nurse was saying that my milk was "too rich" for dd!! That colostrum is gold - I made sure dd got every drop!

Getting back to the subject of PPD/PTSD, I had PPD (still have maybe) with dd, probably had it before she was born, just from the stress of not knowing what was going to happen next. I finally started zoloft at my postpartum check, which was actually 3 mos after she was born. I'm still on it, even tho' I think I've come to terms with the actual birth experience. I don't do well with prolonged sleep deprivation and dd is not a sleeper!

This thread is great for me to read, very painful, but helps the healing!