Parents of former NICU or Preemie babies ??? - Page 2

[Quirky]

After a great unmedicated birthing center birth, except for meconium staining when the midwife broke my waters, my son wouldn't latch and his respirations were consistently high all that first night that we spent at the birthing center. The next morning the midwives decided to transfer my son to the NICU because of the rapid respirations, which as we then found out can be a sign of infection in the newborn. They were worried about the possibility of meconium aspiration as well as GBS infection.

It took four days for them to figure out that my son didn't have an infection and didn't have any meconium aspiration. Longest four days of my life. ITA with the posters above commenting about the anti-APness of the NICU: the nurses were constantly telling me I should put my son back in the plastic box because he needed to rest quietly. Ummm, no, my baby needs to be held by me or my husband. The LC was a no-show after many requests for help with nursing. The nurses we had were of the school of thought that if you grab a breast and shove the baby onto it, the baby will nurse. Even though my son was huge compared to all the other babies (he was born at 42 weeks and was 8 pounds 7 oz.) I couldn't convince them to take him off the glucose IV drip so that he would get hungry enough to nurse. He had some weight to spare, it wasn't as if he would starve to death without the IV even if he couldn't nurse. Then they required us to bottlefeed him for 2 days so we could prove he could take enough nourishment by mouth before they would let us go. Can you say nipple confusion?? They wouldn't let me stay and hold him when he blew through IVs and had to get them replaced. Grrrrr...

It took us over 2 months to get my son nursing full-time, and we had (and have) major thrush issues. Part of that was due to his rapid breathing and small mouth, but part was also due to the IVs, bottles/formula, antibiotics, and lack of lactation help in the hospital.

I realize that our stay of 4 days was nothing compared to what so many of you had to go through, and I'm not trying to say our situation compares with what so many little babies and their parents had to overcome. Still, it was a very painful and very frustrating experience, and it took a while to come to terms with it. In retrospect, I don't know what if anything I would have done differently except have the number of an outside LC lined up and have her come in immediately to help with pumping and nursing. But I think I would have tried harder to be there for the IVs, etc. even when they wanted to kick me out.

[ellery]

nicu

ellery was in nicu for 1day after major open heart surgery to remove a large blood clot long story but what a wonderful placefor it being so sad i have the highest respect for the strong parents.Also for the doctors and nurses i couldnt do it it takes a special person.

[momoftristan]

What a wonderful thread, Thank you so much for starting it.
My precious little miracle was born at 25+ weeks after my water broke at 23 weeks . My best friend had started a thread about us and I'm sorry I haven't figured out how to get back to it again.
Here is our story. DS is my first baby born at just 2lbs 0.5oz and 13.25in long his apgar scores were 2/6 . Being a micro preemie he had many complications, intubated right after birth he had hyaline membrane disease and required 2 doses of surfactant and a high frequency oscillator vent for the first week and then on to a conventional vent for a total of 2.5 months. After extubation he required CPAP, high flow then low flow for a total of 4.5 months on oxygen.
He had seizured a few times the first couple of days which led the Doctors to believe it was one of the sedatives causing them. A UAC and a UVC were inserted a photo therapy lamp over head to treat the severe jaundice, his billi count was so high up until the week he was released then it slowly started to decrease. He required numerous medications and sedatives.
He had a PDA Ligation, bilateral inguinal hernia repair, stage 3 ROP which was corrected with laser surgery. He had severe RDS and with the long period of ventilation caused BPD as well as major swelling to his vocal cords causing partial paralysis to his left cord and a subglottic cyst to his right that was marsupialized. He had NEC and was unable to nurse or take in EBM for the first month. He then had an NG tube placed but suffers with GERD and was unable to tolerate feeds, he had an NJ tube placed and was finally able to tolerate EBM, all the complications with his feeds led him to have his NJ tube for over 5 months. We had a long battle with his feeds and weight gain and am now happy to say he eats very well, though he still suffers from GERD it is not as severe.
He had a total of 5 spinal taps, 10 blood transfusions, 3 batches of platelets, many ultrasounds and x-rays.
After exactly 5 months in the NICU, 8lbs 3oz, we finally got to go home . With only him suffering from GERD and a paralyzed vocal cord he is happy and healthy.
Now 11 days from turing 1 (actual) 8.5 month(corrected) he is crawling, standing while holding on to something, 16lbs and 25in long and a very energetic boy.
The long journey that we took, the emotional rollercoaster that we were on took all our love, strength and courage to make it through.
Thanks for giving us a place to tell our stories and meet other parents who have had similar experiences

[untomySelf]

What a wonderful thread, I only just found it!

Our ds (3 in June) was born right on time, a long long(40 hour)drug free labor, out he came, wonderful grand and then a few minutes later, he was taken off my belly and next thing we knew he was in NICU with pneumonia.
What the???
He was there for 10 heartbreaking painful days. They ran every test known to man on him...my protests didnt matter to them. It was pretty inhumane (and I too got the "dont overstimulate him" thing and 3 days before I could hold him).
I too learned alot about the medical "system" and their concerns with being sued overriding family emotional needs.

God I remember sleeping in the car and waking at 5am (thats the earliest they would let me in) and hanging around all day and until 8pm.
the nurses where actually very helpful with helping us learn to nurse.
I pumped like an overripe cow and insisted that the nurses gave him nothing but my milk. It still took us another 8 weeks or so to really really exclusively nurse. I am so glad I persisted bc it has helped him heal alot of that trauma and helped me heal my undescribable need to nurse him and be attached.
I had to ask my dh to take the photos of him in there bc I couldnt bare it. Slowly, day by day, the tubes and iv's grew less and God I remember scrubbing in and just about peeing myself to get in there!!

I remember one day arriving and the nurses where sitting having a chat while my ds was left in a babyswing. He wasnt crying but when I saw this, I of course instinctively ran there (totally pissed that they werent attending to him in my view), they said oh no he is happy there leave him.
What the *(&(^)&*^)*&%)*&&(*& is that?!
I think the look I gave her said it all and I quickly took him out, placed him against my bare skin and put him in the sling I bought there everyday and then felt like I could breathe again!

Wow, it is such a painful journey..what memories I have of that. I still feel deep grief when we look at his pictures together...but he is a healthy wonderful loving and seemingly trauma free boy now.
I did work hard when he came out to help him heal. He was in arms seriously at least 8 hours of my waking day and he slept with us. We did some cranial work, some homeopathics, quiet time when he came out so he could heal from all the NICU sounds, dim lights all that kind of thing.
I like to think and I do sense this helped us both.
I just glanced over at him and there he is naked doing a headstand. LOL
I guess life is a blessing ladies
I know I am blessed and Im grateful too, Im not who I was before it all happened.
I also agree that until you ahve had a baby in NICU, its hard to really know this kind of grief.
thanks for the thread, I am enjoying all your precious stories.
Namaste

[JesseMomme]

Wow I had only just found this thread.
I'm reminded almost daily of my son's NICU stay when I see the small light scar on his chest, from the tube inserted to treat a partially collapsed lung.
It was a very traumatic experience and even now I speak very little of it. I find myself discussing his birth more, well over the years, although it was his birth that landed him in the NICU anyhow. If you have 20 minutes you can read his birthstory here. I wrote it back when I just didn't understand or know why or what happened. So I want to mention here if you read it his lung was punctured (causing a part of it to collapse) by rescusitation equip. and because he was believed to be in trouble before he was born, they should not have cut his cord while it was still pulsing. I also had nubain during the labor - which is associated with breathing trouble. They blamed his pnuemothorax on meconium (there was some, but it was old, and some mec babies can cough up on their own, not a big deal) and his trouble (pulmonary hypertension) on being "late" (42 weeks, 8 lbs 4 oz). I went through agony wondering what "I" did during my uneventful pregnancy to cause this and was certain it was somehow my fault, or just "one of those things". (that belief was pushed on me further by others, esp during my second pregancy, and when I tried to break away from it they dug their claws in further)

to all of you strong mommas. It is true that it is hard to convey what it is like to other people when your baby is sick, and/or hanging by a thread. Or what it was like too. It was a blur for me...time seemed to have stopped. I dreaded leaving every night with out taking him home with me, and cried myself to sleep every night, slept little and when I did sleep I had nightmares.

Most of the NICU staff was wonderful and caring, and ecouraged breastfeeding (when I pumped they saved my milk to give him when I wasn't there) though I remember one nurse, who was preg herself of all things, who would have a fit if I touched him, and was always saying something too harshly and acted like I shouldn't be there in general, making me feel like I was constantly in her way. I also had to leave and come back later during shift changes which I felt was stupid. The level 4 NICU staff in the second hosp where he was transfered to were angels.
He was in two nicus for a total of 3 weeks, from day 2 to day 6 he was on two different types of respirators. In a way I am grateful it happened because otherwise I wonder if I would not have taken the path I did had it all not happened. I might not have eventually wizened up about the state of medicalized birth in North America, I might not have had my unassisted birth which helped to heal me in so many ways.
Ah, baby's hungry I have to close

[khrisday]

JesseMomme,
Yes, yes- the scars!!
Man, I HATE those things. My dd has one on her neck from her surgery, one on her head from IV (can't see it anymore- covered by hair), and one on her hand from IV. Nobody else even notices them, but everytime I look at her I see a piece of my child that was sliced into, and it kills me.

[Periwinkle]

Oh, the scars! My dd and ds have tiny white scars on the top of each foot by their ankles... from those horrendous IVs. I kiss them there all the time, trying to "make it better" I guess.

I am so overwhelmed reading all of these stories. I want to share our story in more depth too, but I have to go because they're ready for lunch now!

[Quirky]

my ds has a scar (kind of a dark mark) on his forehead from the scalp iv. i'm hoping his hair will grow to cover it.

one of the reasons the iv scar bugs me so much is that i was in the hospital for a month when i was 6 with osteomyelitis, and the ivs were the worst. they hurt so much, and i would scream all the way through them. i still remember freaking out when they didn't wait once for my mom to come so she could hold me while they did another iv. the fact that my newborn son blew threw ivs in both hands and both feet, and had to go to the scalp iv, and i wasn't there to hold him for it, still makes me cry.

[Periwinkle]

I wanted to put in our longer story earlier, but have not had the time. Here goes...

I found out I was expecting twins at my 14 week sono. My pregnancy was totally uneventful until one day at 28 weeks I had a sonogram that showed preterm labor with cervical "funneling". In fact, they caught the contraction during sono and could measure changes. Though I was still 0 and closed thank God. From there, I went on strict bedrest, with terbutaline pump, daily uterine contraction monitoring, etc etc. I probably bounced into the hospital three or four times over the next month due to contracting over my threshold. The last time I went in I was 32 weeks - I was having 13 and 14 per hour, and the IV I was given, and all the terbutaline did nothing to touch them. They gave me the steriod shot right away, fearing the babies would be born soon. I've never been so scared in my life... until 2 days later... I had been in the hospital on mag sulfate, which wasn't bad, but it only got them down to 6 or 7 an hour. At 3am on Saturday, I "broke through" the mag, and started contracting more (though painlessly). Early morning, I was 0 and 50% effaced. By late morning, I was 4cm and 100% effaced. At that point, I was told, "Karen, there is nothing more we can do - we need to prepare you for delivery." I cried and cried, called dh panicked, and he rushed to the hospital. At 12:30pm, I was wheeled into L&D room with dh, the two of us practically screaming our prayers over and over again begging God to let our babies be OK. I delivered dd vaginally w/ no drugs/interventions and ds was heading in the right direction when he turned and became transverse. We gave him about 2 minutes to turn, but no one was interested in playing any games with a 32-weeker, so into a c-section I went. Dd was 4 lbs even and 18.5", and ds was
4.5 lbs and 18". They were pink and healthy and screaming bloody murder - apgars 7/8 and 7/9. They were in the NICU for almost 5 weeks, just growing, learning to suck/eat, and generally getting big enough to come home. That sounds good, but those of us with preemies know that meant NG tubes in their noses, IVs in their arms, legs, feet, heads. It is horrible to remember that.

Thank God they didn't have any problems. The only issue was both came home on apnea monitors at 36 weeks gestation equivalent. Which was good because they went off all the time during those first couple of weeks! They would urp-up milk and their heart rates would plummet ("bradycardia") -- we all got so used to doing to that over-the-knee baby Heimleich maneuver, and they would come around quickly and resume noshing just like nothing had ever happened. I can laugh about that now, but man it was hard to trust my instincts back then.

All in all, they are happy and healthy, with no problems. We had a big 6 month checkup at a developmental clinic at Children's hospital and all was OK thank God. They did have bad reflux, but that never bothered me much. Plus, they started growing out of it around 6 months, and now it's a non-issue.

Dd is 90% for height and around 85% for weight - she caught up fast! Ds is about 60% for height and 7th for weight! He's a stringbean. Everyone always comments that he's smaller than she is, which used to bother me a lot, but now I don't really care.

[stretchmark]

Hi, I posted here a while ago and don't see my post, perhaps I clicked to a defferent screen too soon.
Anyways, here is my story:
Kira was born at 26 weeks or 24 depending on how you look at it. I was 5 1/2 actual months. Her umbellical cord wrapped around her neck a few times and she quit producing amniotic fluid. It all dried up and she quit moving for an entire week.
I was told she was going to die by my doctor and a specialist.
during monitoring, her heart rate went down to the 50s and I was rushed down the hall to have a baby. She cried when she came out so quietly that I thought it was a huge baby being born down the hall.
We were in the hospital for 2 1/2 months and I don't even want to go into the hellish experience of the NICU. I hated it and haven't fully processed it.
Kira was 1 lb. 7.8 oz.
She gained weight better than they had seen any 26 weeker gain. I tested my breastmilk throughout and it had about 46 calories per ounce. Still they fortified with corn sryup crap.
Coming home was not exactly a treat either with all the developmental specialists and home health nurses. We had so many appointments. We had so many people warning us about RSV shots and vaccinations, washing our hands,etc. It was crazy. I saw my daughter turn blue, quit breathing, eyes roll into back of head. I saw IVs coming out of every vein, feeding tubes, ventilators, temp. monitors, ughh. We came home of feeding tube and monitors.
DD never breastfed because she never ate through her mouth. She was on a tube for over her first year and finally, after having a doc almost kill her and want to retry the surgery, we saw an Ayurvedic doc and Kira was eating within a week. Long story.
It is a tough experience to rehash in my mind.
We saw many wild situations in there. We saw a baby born whose insides were not formed properly, the trachea and esophogus were not serapated, she could poop out her mouth, it was very sad, but everything was corrected with surgery. They also thought she was a boy when she was born because of an enlarged clitoris. There was a baby in there who had been in there for over a year whose mom lived two hours away with his twin brother. It was so heartwrenching and yet I couldn't let it wrench me because I had to survive and pump milk for this tiny being who could leave me at any second.
I still have the hat she wore the night she was born. It is so small. I carry it around sometimes to remind me of what a gift I have, as if seeing her isn't enough.
Ok, that is my piece,
Tiffany

[Piglet68]

This thread is amazing, and so are all you mamas who are sharing your experiences. I don't even know what to say, except that my heart goes out to each and every one of you, and I am in awe of your strength and courage.




I'm going to move this thread over to Finding Your Tribe, so it can have a more permanent home.

[Quirky]

Happy birthday to TwinMommy's babies!

Happy birthday to TwinMommy's one-year-olds! They are both total cuties!

[JesseMomme]

I can still hear the noises sometimes. Those dings and bleeps coming from all of the moniters hooked up to all of the babies. I remember once, several months after my son was born, going to visit a friend of the family who was in ICU due to a heart attack. When I walked into the unit I was overwhelmed with the noises, they were the same. I nearly burst into tears immediately, and had to struggle to hold it all in during my visit. When I left, I thought I was going to throw up.

I can still almost remember what everything smelled like. That it always felt cold in there. I recall the other parents that came in to see their babies, we were strangely silent to each other outside of niceties. It was all these different dramas, all happening right next to each other, each one oblivious to the next. But sometimes I listened in, hoping their babies were getting better. Then my attention fell back to watching my own son, and the reasons why we were there.

For scars, I don't see any on his hands or feet, but he had IV's in all limbs. I remember the nurses loved all of his dark hair he had, they were hoping they didnt' have to shave some of it to get an IV in there as well. He almost did, but thankfully didn't. In my mind the IFM scar was more than enough.

[khrisday]

The way the soap smelled- if I smell it again I feel sick to my stomach. The hospital my dd was in was an hour drive from our house, and although they found us a place to stay in the city across the street, we did have to drive back and forth several times. For the first few years afterwards, if we drove to the city I cried on the way. Even seeing a carpool van from the universtity made a catch in my throat. My dd did have to have part of her hair shaved for IV's. It felt like it would never grow back. I put her in hats for all of her baby pictures.

[RileysMom]

Oh, that smell! :Puke

When I was pumping, the lc kept telling me to bring something home that smelled like my baby to use to try to help me let down. Everything smelled like that horrible hospital smell.....and the pics of her just made me feel more upset

[Periwinkle]

Thank you Jane!!!!

My 32-weekers turned 1 yesterday! WOO-HOO!!!!



We had a wonderful day. Family and friends came over for a casual cookout at lunch, then we went for a walk (in our NEW baby backpacks.. thank you MIL!!) by the Potomac river. It was so much fun. I baked the babies their own cakes from scratch (one yellow cake and one banana cake), and they dove into them, smearing icing everywhere! Then baths, then they "crashed" from their big day. Dh an I looked at old pictures, and remembered how far we've come. This day last year was no doubt the hardest in my life - the day after they were born... the reality of our long NICU stay, the first time witnessing an IV change in poor little dd, sitting next to their incubators just sobbing, reaching in to touch them gently through two tiny doors, holding them for the first time for only 2 minutes each because their body temperatures started plummeting, pumping for half an hour just to get 5cc before my milk had come in (and not knowing that it ever would), holding their little skinny wing-like arms while I learned to take their temperatures, calling our priest in tears and asking her to drive for over an hour to come give them each a blessing... and that was just the morning.

Looking at dd and ds on their first birthday yesterday, it was hard to believe what a tough beginning they'd had. And reading all of these posts, I am reminded that miracles happen everyday.

[girlzmommy00]

My now 3 year old, Lauren, was my 33 weeker. I'd gone into labor at 21 weeks and was held off until we discovered at 33 weeks, through ultrasound, that I had no fluid left and was induced. Lauren was 5 lbs 8 oz and 19 in, and was breathing fine on her own, so she came home with me 2 days later.
We've had a big up hill battle of severe allergies, digestive tract problems and asthma since then. Though my 8 month old also has the same severe allergies and asthma, so I just think those were bad family history. But we went to the pedi dr weekly, the pedi gastro dr and drove 3+ hours to NYC to see a pedi allergist (we are in NJ and usually only 45 min from NYC, but with traffic it took that long to get there). Lauren was on an elemental amino acid based formula, called Neocate, only until she was 2 1/2, no solids, nothing but the Neocate. Everything else made her vomit, there were days she threw up 20 or more times. All they could figure was that her system was being so irritated by the allergies and her digestive tract wasn't properly developed since she was early.
Now at 3, she is 46 in tall and 45 lbs. We still giggle at the drs who said she'd be small and not to worry about it She's doing well. She still has some food allergies and asthma, but no more vomiting. She did take longer with the potty and is still working on that now. I've heard that preemies often take longer to learn to potty, something the dr's leave out.
I was very nervous when I was pg with Lily last year. I did have the same low fluid problem but saw a high risk dr who kept a really close eye on things (weekly u/s the whole pregnancy) and we made it to 38 weeks.

[Len]

I'm glad to have found this thread. After planning to have my son protected from all "medical" interventions, he came to the world 12 days after his due date only to be attached by IV to constant antibiotics for his first 10 days of life (GBS + meconium aspiration). All the wonderful baby clothes carefully selected, had to be replaced for oversized gowns and plastic diapers from the hospital. I ended up having a C-section but was "released" two days later. The hospital had an abandonded ward, and they let me stay there (even though I live 15 minutes away from the hospital, I didn't want to go home without my baby) but it was totally freakish and spooky at night. But I got to spend around 1 of every 3 hours holding and feeding my baby, and I had to go through shift after shift of nurses giving me unsolicited advise (why are you here? why don't you go home? why don't you go to sleep and we'll feed him some formula?) I found comfort on the beautiful moon we had that week (it was in the middle of summer) and on several spiders that used to visit us once in a while.

[Katana]

Thank you for this thread.

to all you mamas for your bravery and strength and love for your babies.

I can't even look at those blankets they use, the green and pink and white ones without all the feelings coming back. Or even hear the click on an automatic door. I hope that will fade in time.

My twin sister and I were born at 32 weeks, and I spent the first three weeks of life in NICU back in '74.

Almost 26 years later , dd was born at 35 weeks. (six days after my birthday).

I had planned a homebirth but went into the hospital because of the earliness. She was born unassisted and perfectly natural because the doctors didn't believe I was going to push her out, so they left me and dh alone in the room. That was the only 'good' part.

One minute, she was with us, 6lbs, 19 inches, with an apgar of 9, and the nurse was saying she'd be able to go straight to the newborn nursery. Then, they came in and took her to NICU saying it was policy for any baby born before 37 weeks to stay there, for at least a week.

For four days she was in the huge NICU. I got to hold her maybe three times. Most of the time I couldn't even get in to see her because they were doing procedures on another baby, and no parents were allowed in whenever they were doing procedures. They wouldn't let me nurse her, even though she latched onto everyone's fingers and wanted to. They kept feeding her formula, pumping her full of anitbiotics, and puting her under the bilirubin lights. Just to 'be safe'.

I felt so horrible for crying hysterically that I couldn't hold her or nurse her when the baby on the one side had been born at 23 weeks and was barely holding on, and the one on the other side had swelling around the brain, was in a coma, and even if he recovered would have constant seizures for life.

It was the most life altering experience of my life. I had to stare at my own demons from being a premie right in the face, and know what could happen. And then just pray that it wouldn't. Not knowing was the hardest part. The uncertainty and the waiting, it just gnawed parts of me away.

The one thing I clung to was that she was a fighter. She was so strong and so feisty. She held up better than I did. She was crying so much and so active by day four that they moved her up to the newborn nursery, into a 'stepdown' part.

I don't know why they kept her in the hospital for a total of nine days. They kept insisting it was just to make sure that her bilirubin levels didn't go up, but I never believed that. They were never above 12. Someone there told me that the levels should be at a 23 before a baby is put under lights.

We got her out of there, that's all that really matters. She's been perfectly healthy and perfect. I had a lot of resentment in me that she was just a guinea pig, for no reason other than policy, but I have learned to let it all go.

She's the sweetest, gentlest, most loving angel ever. She's taught me so much, that I needed to learn. She's taught me about love and trust and forgiveness, and most importantly, hope.

Peace and strength to all of you.

[charmarty]

have you noticed........

That we parents of our sppecial little miracle angels are some what ummm different?I am not exactly sure how to explain it but we seem to see our children differenlty through our eyes.Almost like they are special warriors and know deep in our souls how blessed and special these children are?
I know all parents feel this with thier children but I think its a different degree.We have watched our tiny babies truely struggle.We KNOW thier inner strengths!They are just so special!

BTW my 33 weekers were born 5 lbs and 4 lbs 7 oz.We were there for 2 weeks.I will never ever forget it.