Parents of former NICU or Preemie babies ??? - Mothering Forums
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NICU & Preemie Parenting > Parents of former NICU or Preemie babies ???
Periwinkle's Avatar Periwinkle 11:48 AM 05-06-2003
I started this thread because I have seen various threads that have touched on NICU or Preemie experiences, but I wanted a place to share - this isn't about "special needs", but more about parenting babies who started life in less than ideal circumstances. We are coming up on ds' and dd's 1st birthday, and I recently I have been having "anniversary" memories of our NICU days...

Here's our "short story" - dd and ds were born at 32 weeks after 5 weeks of preterm labor. I had a "natural" birth for dd then ds became transverse and nothing would move him so I had c/s for him. Both babes were in the NICU for a little over 4 weeks. No complications per se, unless you consider not being able to hold your babies any time you want for an entire month a complication. They came home from the hospital a MONTH before my due date!!!

They are happy and healthy, but we sure had some rough days - both came home on apnea monitors for bradycardia due to reflux, they both had reflux for a while, and then there were the weeks and weeks of working almost daily with a lactation consultant to get them to nurse well when they shouldn't even have been born yet. But there are still some vestiges of our NICU days that I run into every now and then. Like the whole "corrected age" for major milestones. e.g., I find myself getting worried about dd not crawling yet (just creeping - I actually posted a thread on this a week or so ago) then I remember technically she's only 9 months corrected, so I can relax a little.

I'd love to talk with other ex-NICU moms. See how you handled it. What challenges you face as your babies get older. Anyone else get bittersweet feelings around your baby's birthday too?

Justice2's Avatar Justice2 12:26 PM 05-06-2003
mama! My dd was born at 32 weeks (after 144 hours of extremely slow labor due to MAG) and was amazingly healthy. We were only in the NICU for 5 days and then the regular nursery for 9 before she was allowed to come home, also on the monitor. At the time I was only 19 and noone had explained to me "adjusted age" or "milestones". When we did go to the doc, it was only for well check ups. To this day, dd is never sick! I think the hardest part for me was the IV in her head. She needed no oxygen at birth, so I didn't have to see a vent. She had so many wires all over her tiny body (3 # 13oz). I think that I am truly blessed to have gone through the "preemie" experience and have come this far, dd is almost 8). My ds tried to come into this world at 25 weeks (and 30 and 32 and 34) and finally was allowed to do so at 36 weeks! He was a biggun! 6lbs 10oz. Also very healthy!

I am glad to hear that your twins are doing so well! Keep up the good work. I am sure that your little one will be crawling all over the house in no time!!!
RileysMom's Avatar RileysMom 01:55 PM 05-06-2003
Hi, my Riley Jane was a 29 weeker now born via emergency csection. (I went into premature labor that they couldn't stop and she was high and lateral)

She didn't have a chance to get steroids or anything and was in the NICU for 3 long, hellish months She did come home on a monitor, but not for long.

Today, she's a happy healthy 22 month old with no long term effects other than a belly button scar (from the IV lines), a teeny bald spot on the back of her head (from a pressure sore), and being a bit slow to talk.

She's unvaxxed, had breastmilk for 16 months, and has only had a few head colds...nothing serious.

I probably have more long term affects than she traumatic stress, nightmares, flashbacks, you name it. It has all really come back to me over then past couple of months because I am unexpectedly pregnant again. I *thought* I was mentally prepared, but the emotions sure have come back strongly!
momatheart23's Avatar momatheart23 09:02 PM 05-06-2003
OK, mine wasn't a preemie, but he was in the NICU for 12 days. I almost had a harder time with it because since he was fullterm with a problem free pregnancy and normal labor, I didn't expect it at all. In fact the first two hours after labor were uneventful(as much as can be). But then his breathing sounded rattley like he had fluid in them, so they took him to the nursery just to check him out and bring him right back. Well two hours later I get called to the nursery where he has tubes all stuck in him and a ventilator hood. They tell me he has low blood sugar, too rapid breathing and a heart murmur. They don't have a NICU at that hospital, so he is going to have to be life flighted out and I can't leave for 12 hours postpartum. My husband had gone home for the night and I fell apart. Having a baby in NICU is an eye opening experience. There is no understanding it unless you have been there. I couldn't hold him for three days because it would overstimulate him, I couldn't even touch him "too much" I had to learn to pump before breastfeeding. The plan to wait to introduce a bottle gets thrown out the window. I had to go home without my baby, when all along all I had pictured was coming home with the baby. The day he was released was the night of September 10, 2001. So his first day home we woke up to view the attacks all day long. I have to say is hind sight since my son is now the healthiest most amazing toddler I know who had no health issues, that is was a blessing in disguise because it taught me to take my health alot more seriously. I have made huge strides in becoming healthy because of him. I also question the mainstream medical establishment and have realized all the things they don't tell us. I get all teary thinking of it even now, but in the long run it was a great thing.
meg's Avatar meg 10:39 PM 05-06-2003
My sweet little preemie was born at 35 weeks via c-section due to IUGR. He was 3 lb. 7 oz. at birth and lived in the NICU for three weeks.
The time he spent in the NICU was sort of a blur - they had a strict schedule of when we could visit and interact with him. I visited him three times a day, so most of my time was spent driving to and fro.
We had to learn about all the typical preemie issues first-hand such as apnea, jaundice, reflux and hernias. Nursing never clicked for us no matter how hard I tried so he lived on ebm for months until my supply diminished and then he went on formula (ugh!).
I totally agree that unless you've had a kid in the NICU you just don't know what it's like. Leaving your brand new baby in the hospital when it's time to go home is heartbreaking.
My ds avoided major medical issues and is now a very healthy, happy 20 lb. two year old.
I still worry about having any other children for fear we will have to relive this experience.
I'm glad you started this thread - it's good to talk through these fears and emotions with people who have lived it.
jingwen's Avatar jingwen 03:33 AM 05-07-2003
Thanks TwinMommy for starting this thread!

My ds just had his first birthday and i was thinking the same thing... reliving some of our "anniversary" moments.

My ds was born 37 weeks because my membranes ruptured early and he was breech. Unfortunatley, i had a C-section and my son came out seemingly fine with apgars 9/9 and weighed 5lb 15 oz. It was about 2 hours later when he started to struggle to breathe. Later he was diagnosed with RDS (That was after he was misdiagnosed first, but that's another story). He stayed in the NICU for 2 weeks, particulary to wean off of the chemicals and narcotics that was wrongly given to him.

This past year, life with ds has a roller coaster. After the NICU he had colic, reflux and he's "spirited" to boot. He met some of his milestones a bit late as well but made up for it in his weight!

Now, the only medical complications he has is asthma. The doc said that is probably caused by the ventilator. Any long term complications with his kidney and liver from the chemicals we won't know until he's older.

Being a new mom to a NICU baby was the most frightening and emotionally draining experience. I felt so guilty, as if i must have done something wrong during my pregnancy to have caused my son to be in the NICU.

During his one year birthday, my husband and i took some time and looked over pictures of him in the hospital to appreciate how blessed we are that he's happy and healthy now. Plus, it sure does put it in perspective when we get frustrated with the joys of parenting to remember where we came from...
Periwinkle's Avatar Periwinkle 11:04 AM 05-07-2003

It is awful to read all these stories but it is wonderful at the same time. We all went through so much. It's amazing that everyone's dd's and ds' seem mostly healthy and happy in spite of it all.

Justice2 - our stories sound so alike! It's so wonderful to hear about toddlers who are healthy and doing great in spite of early arrivals!

RileysMom - I've often thought about getting pregnant again and if I'll be worried the whole time. I remember feeling that way a little bit during the last month of my pregnancy... any little twinge and you jump worrying about premature delivery. to you. And prayers that all will go smoothly with this little bundle!

MomAtHeart - I do think it probably is harder when you're not expecting it. I don't take offense to that at all. I saw mamas in the NICU of big full-termers just shocked to death that they were there. It makes you realize how fragile life can be sometimes, how complications aren't always avoidable... or expected. I totally agree re: being more aware of health and questioning docs. I was a pretty mainstream gal before :LOL and now I research everything and ask sooo many questions.

Meg - The pumping was so hard in the beginning. I think that tops the list of one of my most hellish/traumatic experiences to tell you the truth. I remember vividly sitting there alone in my cold hospital room at 2AM, after waking up to an alarm clock I set, attached to an electric pump and looking intensely at a Polaroid of my babies to try to let-down. Then asking the night nurse to bring my tiny amount of milk down to my babies. It didn't get better for weeks until they could finally latch on and suck hard/long enough.

Jingwen - I love the idea of looking at some old pictures and comparing them to "today". That seems like a really cathartic thing to do. Thank you for that. I also think it helps put things in perspective... people are always saying to me (about the fact we have twins) "Oh it must be so much work" or "The first months at home must have been a nightmare" and so on. Aside from the cruelty of those remarks, I am always dumbfounded... because I never really felt like it was terrible because even at the worst of it (e.g., the 5th nursing in the middle of the night and it was only 2AM!!!) I was so very glad I had that chance. It sure beats the alterntaive.


Keep the stories coming! This is so therapeutic! How has everyone handled "corrected" vs. actual age? Any freak-out stories re: growth, milestones, etc.? (I had some earlier on.)

Justice2's Avatar Justice2 11:26 AM 05-07-2003
Last year I get a call from Justice's (my 32 week dd) school telling me that she had a fever. Well, the night before Justice had mentioned a sore throat, but said it wasn't that bad, continued to play, no fever and ate all of her dinner. So, I go to the school and pick her up. I took her temp at home and it was a whoppin 104 and her throat was a mean red. Instead of taking her 30 min away to her ped, I took her to the urgent care center that is literally right in front of her school. We go in (bare in mind that my 7 1/2 year old is very petite) and they weigh her and take her on. The nurse comes in looks at her throat and says "I don't think we need the test, but I know the doc is going to want one" and does the strep swab. The doc comes in a few mintues later and the VERY FIRST THING HE SAYS is "Have you consulted an endocrinologist (this is a "gland" , ie pituitary specialist) about your daughter's retarted growth?" I (barely keeping my growing hysteria under control) explain to this man that my daughter was a 32 week preemie and that the docs say that she will catch up eventually. He looked at me as if I had lost my mind and declares in his "I am a doctor and I know everything" voice that she should have caught up a long time ago. Well, it was determined that my daughter did in fact have strep throat, was given very mild antibiotics (at my request and he argued about this too - my daughter is NEVER sick and was completely over this strep thing within 24 hours, where most people are out of commission for at least a week) and we went home. I immediately called her ped and told them what the quack had said that they asked my to bring Justice in the next day (it was time for physical anyway). My ped told me, upon examination, that my daughter was perfect and so was I and not to take her to idiots anymore! Since that day, I don't take my daughter to anyone but the doc that treated her when she came into this world an afterthought, at our last visit my baby had finally hit the curve!!! She is now at an even 25% for both height and weight!
heartmama's Avatar heartmama 03:17 PM 05-07-2003
I'm writing a book for ap parents of hospitalized babies/children (and by book I'm not refering to this post, which is a really, really long one *LOL*)

Ds was born at home, but needed open heart surgery two weeks later. His first stay was for six weeks. He's been hospitalized 5 more times since then. He is now 7 and a very happy, active boy.

I think early NICU exposure breeds many long term complications for some children. I think what we feared most was the possible detachment being out of contact can inflict on a baby in ICU. Thankfully, even though we could not hold ds most of his first month and half in the hospital, we fought a lot of red tape to stay in constant contact with him--singing, talking, touch therapy, etc. He came off the ventilators very attached and with a strong preference to be held and comforted with human contact. Some babies begin to find human contact distressing after being deprived from it, and we wanted to avoid that, though the hospital made it as difficult as possible for us to succeed.

Complications we did have were stranger anxiety and nightmares, even when he was a very small baby.

He also had horrible sleep patterns--he could not fall asleep without an overload of sensory input--meaning if he awoke during the night several times, he had to be taken out of our bed and carried, sung to, or driven in the car to fall back asleep. Otherwise, he cried hysterically. Patting him or rocking him or feeding him wasn't sufficient. He seemed incapable of experiencing organized internal rhythms for a long time. He craved "sensory overload" in order to fall asleep. He was 2 years old before he could fall asleep with more "normal" comforts, like being read to, or rocked, or a bottle. I have no doubt that spending weeks semi sedated as a newborn thwarted his own natural rhythms so completely, it just took *that* long to build them back up.

Also, after many exhausting months, breastfeeding failed for us. He had low muscle tone to begin with (meaning a very weak suck), and the six weeks he spent intubated without eating further diminished his strength. He nursed around the clock when we came home but continued to lose weight, as he burned more calories nursing than he took in from the milk. We used SNS systems and haberman feeders but he hated them and refused to eat at all when I used them. He was going to be scheduled for an ng tube when we decided to try a variety of bottles to see if he could tolerate any of them, and found one he could use without gagging. Once he found how easy it was to use that nipple, he refused everything else.

One of the worst parts of NICU for us was the complete lack of awareness from the staff and the hospital over the emotional needs of a baby/child who is hospitalized. Worse, there are many hospitals with policies that actually discourage or prohibit parents or staff from addressing a child's emotional needs. And there is so much research showing the connection between emotional state and healing, that hospitals who ignore this are simply not doing there job, which is to do the best they can to help every child in their care.

Hospitals that restrict visiting hours, fail to provide accomodations for parents (such as chairs and cots in their childs room), and who discourage parental involvement in their childs care (such as feedings, diaper changes, learning to administer meds while still in the hospital), and who in any way fail to support the family as a part of the child's healing process are ignoring a basic element of healing, and it's unacceptable.

I am fascinated reading other's experiences in NICU, and so happy to hear how well the children in this thread are doing!

mojomom's Avatar mojomom 04:16 PM 05-07-2003
Momatheart23- I could really relate to your feeling it being harder with a full term baby. My ds spent 4 days in the NICU. It was a very big blow to me emoitinally because my birth with him started it out as a VBAC in a freestanding birth center run by a CPM. I asked to be taken to the hospital because 6 weeks before my sons birth my SIL and good friend lost her son during birth at the same birthing center. it became to much emtionally for me to stya there so after pushing for 2 hours they brought me to the hospital at my reguest. I thought worst case scenario would be c-section and then have to wait 45 minutes for my son. He had respitory promblems as a a complication to the c-secion(huge mommy guilt), they heard home birther and there alarms went off and assumed he needed all kinds of blood work and had to stay in the NICU until it all came back okay. It was hard seeing my big,healthy boy in this little incubator around all these babies who were fighting so hard to live. I felt like I had no right to complain or feel bad for my situation and did not feel right telling anyone how disappointed I was, my family just lost a grandson,nephew and son. Who was I to complain about having to wait a few days. I worked real hard to walk down there every 2 hours to nurse him and bring him milk I pumbed,I had to fight around the constant "encouragment" to give him formula. My dd could not see her brother for 4 days, she was at the birth and wanted so bad to see him.This was my 2nd child and the nurse staff made me and dh feel incompetent,they did all the diapering and they had to hand him to me to nurse and they stood over me and watched me nurse him. He was attached to monitors and if they went off to many times(because he moved around,no danger) they would get fustrated and say we held him enough for now and dont want to over stimulate him.It did help me to see how quick your birth plans can change and how quick life can throw challenges at you, I learned alot of hard lessons that year and I firmly it has changed who I am as a human being and mother I never take anyhting for granted anymore.
khrisday's Avatar khrisday 05:08 PM 05-07-2003
This is a great thread, and despite the fact that I had vowed not to post here anymore, I have to add my story LOL

My dd was a planned homebirht attended by 2 CNM's. She was my second child, so I really was not worried about anything going wrong. Labor and delivery were just fine- no problems. But whe she was finally born (my water didn't break until I was pushing, the midwives realized there was meconuim, and a lot of it. They were traying to get the baby to breathe, attend to me, and make arrangement to have the ped meet us at the hospital at the same time. They were so calm, that I really didn't realize how serious it was. They encouraged me to birth the placenta as soon as I could, and get up to tajke a shower right away. We drove to the hospital (where the ped was waiting) with my dh at the wheel, the baby in the back and a midwife with her holding the oxygen mask to her. SHortly after she was admitted there, and they were doing some testing, the hospital staff realized that she needed more care than they could give her. They called a University hospital an hour away and told them to send a transfer team to get her. So she ended up at the university hospital, and withitn 24 hours she had undergone heart/lung bypass surgery. She just wasn't responding to traditional therapy, and this was the only chance we had of saving her. She spent a week on the heart/lung machine (it's called ECMO), and another week there at the university hospital, then she was transferred back to our local hospital and stayed there another week.
She was in the hospital 3 weeks total. I couldn't nurse her until she was 2 weeks old, and even then it was very restricted. We were lucky that the hospital she was in was pretty good about involving and allowing us to do things. We were encouraged to help changes her diapers, bathe her, dress her feed her, take her temp, etc when those things could be done. The local hospital was much worse about these thigns. It was definately a neye opening experience, and we all have issues stemming from it. Lucy is 4 now- yesterday was her birthday, and it is definately a bittersweet day for me.
momatheart23's Avatar momatheart23 07:59 PM 05-07-2003
Wow reading all your stories made me realize at least how much better my hospital's staff was. I mean I couldn't hold him the first 3 days because they said his breathing was too fast and he could aspirate, but once that stopped I was encouraged to hold him, change him, take his temp, start nursing. They had a nice private room with a door lock and a electric double pump to hook up too. The nurse I had was also wonderful and helped my spirits out alot. I didn't mean to sound insulting saying it was so hard being full term because I didn't expect it, but as Mojomom said I almost felt guilty complaining about him being there because I saw all the other babies there who had such a harder time. When I went to my first hairdressing appointment after my ds was born, one of the other hairdressers had just delivered her baby at 26 weeks and the baby was in the NICU for 3 months or more. She had only gained 8 lbs with her pregnancy. It does put things in perspective for sure. Now that ours are both toddlers we can talk about it a little easier, but it definitely is a life altering experience.
jannan's Avatar jannan 12:36 PM 05-08-2003
On december 10, 1998 I gave birth to catalina celeste via c-section at kaiser hospital in sf. she was 37 weeks gestation , one kidney. I had gone to a pre-natal the day befor for a check up and they discovered i had severe toximia. so they took her out the next day. she came home dec 30. so far, the kidney has not caused problems. she weighed 3.6 oz she also had intra uterine growth retardation. she would not breast feed so she had a bottle.
Benjismom's Avatar Benjismom 11:49 PM 05-08-2003
I feel like I'm about to burst into tears reading everyone's posts. My dd was born 1/24/03 at 34 weeks after I went into labor during a horrible bout of the flu. She was decent sized, 4 lbs 12 oz, but had a very weak suck and was in the NICU for 2-1/2 weeks, half of that time on an NG tube. She had very bad jaundice and was under the bili lights for several days and on the bili blankets for a while longer.

Although the hospital was OK (didn't restrict our visitation except during shift change, encouraged us to do feedings and disper changes etc.) it was one of the worst times of my life. I felt like we were on an emotional rollercoaster with her feedings, and one of us was there for every feeding other than midnight, 3 a.m. and sometimes 6 a.m. And I had a toddler at home who needed me too. She never has learned to nurse (I'm pumping my life away) and has moderate reflux but is still managing to gain weight. I cant even imagine how hard it is for parents whose babies are in worse medical shape or are in NICU for months. I salute your vigor!

I have decided that I can't even entertain the notion of having any more kids because I worry I would have an even earlier birth (my son was born at 35 weeks after months of preterm labor which I had hoped was an anomaly--guess not).

Beth, Mom to Benji (3/23/03) and Maggie (1/24/03)
boobykinmamma's Avatar boobykinmamma 02:08 AM 05-09-2003
We had planned a home waterbirth for ds, now 3. I went into labor at what we thought was 35 weeks, went to the hospital to try to stop it so we could make it to 36 weeks for legal homebirth. Contractions couldn't be stopped, ended up giving birth in the hospital. It was actually a wonderful birth in many ways. The OB we ended up with was a wonderful, compassionate man, who allowed our midwife to stay by my side all along and do everything but catch DS. We decided to make the best of the situation--dh ran home for music, photos, etc, to make the room more home-like. Ds arrived and he was TINY. The nurses and other staff took him over to the warming table--he was breathing fine. Then one of them said, "I don't think this is a 35 week baby. He's full term." He was very growth retarded, small placenta. He weighed 3 pounds, 5 oz, and was 16 in long. I guess there are certain characteristics that show a baby to be full term--creases, genitals, etc. We got to hold him breifly before he was whisked off to the NICU. He ended up with an IV in his head and monitors all over, in an incubator. I was able to breastfeed less than an hour later. He never had any breathing problems or other complications, just needed to show that he was starting to gain weight. We had to give him supplemental bottles of ebm with milk fortifier. He never had nipple confusion. The biggest difficulty was waking him up for long enought to eat enough. Most of the nurses were fairly clueless about breastfeeding, but fortunately I'd done my reading while pregnant. Shankar went down to 3lbs. 2 oz at his lowest. He went home after a week, weighing only 3pounds 6 oz, but started to gain really fast--doubled his birthweight by 6 weeks. He slowed down his growth after a few months and is still a peanut, just 24 pounds at age 3. Like yours meg, he was also around 20 pounds at age 2. But he's extremely healthy and very, very smart ( mamma bragging allowed, right?).

DD was born at home in the water just 2.5 months ago. She was a little early--36 weeks, and weighed 5'11'' It was wonderful to be able to hold her all the time. It's so surreal, among other things, having a baby in the nicu. It's like they're not quite ''yours" until you get them home--and ours was in for a short time compared to many of you. Thanks for your stories!
Lady of Z Lake's Avatar Lady of Z Lake 04:06 AM 05-09-2003
At 12 days post-term, and after a horrible labor experience, I had a semi-emergency (if that exists) C-section. My dd had experienced consistent, serious heart decels, and was born meconium aspiration. She was whisked away immediately to the NICU where she was put on a respirator/ventilator. She ingested and inhaled the meconium and was extremely sick. She stayed in the NICU for 4 weeks-- the biggest baby in there as most were preemies (and she was only 6 lbs 15 oz!).

Leaving the hospital without my baby was not only totally unexpected, but perhaps the most difficult experience I'd ever been through. Not to mention that I dealt with the C-section (and a subsequent surgery the next day to take out a resulting hematoma). I went to be with her every day. I hated leaving. I was pumping and not producing much. It was soooooo hard to pump and not have my dd (even though I was thrilled she got my milk).

Our NICU has a reunion every year for "graduates." We went the first three years, but probably won't go any more. You know your baby was sick when most of the staff still remembers her by name, even now. She almost didn't make it.

We have tons of pictures from when she was in the NICU. She now talks about when she was in the hospital and asks lots of questions about it.

One of my greatest accomplishments has been making it through that period pumping and being able to breastfeed. We couldn't even hold her until the last week, so she didn't nurse until a couple of days before leaving. Everyone was worried she wouldn't latch on, but she did. And nursed like a pro for 2-1/2 more years!!

Anyway, dh can't look at the pictures without getting all weepy. It's an experience we'll never forget. It makes my dd so special. She still has scars on her chest from whatever lines were running into her there. I see them every time I help her get dressed. A reminder of how fragile life is, and that no matter how well you may plan something, it's not for you to decide.

She is extremely healthy now, BTW. Nary a cold or anything. And she is bright too. (They had been worried about brain damage.)

We're so blessed.
meg's Avatar meg 10:30 PM 05-09-2003
It's like they're not quite ''yours" until you get them home
I know exactly what you mean! It's as if they belong to the NICU nurses and drs and you just get to visit! How un-AP is that?!
I'm wondering if this is a common experience for other NICU baby parents?
GoodWillHunter's Avatar GoodWillHunter 01:58 AM 05-10-2003
My twins were born at 37 weeks. I had gestational diabetes, so their lungs were not as developed as they should be. Granted, they weren't too preemie, but there you go. They were delivered by c-section b/c my dd was in distress. I had no idea they were going to be okay. I remember shuffling into the NICU and going to the incubator with my daughter in it and watching a phlebotomist squeeze her little heel to draw blood. While she was doing this, she was talking to her friend. I went into momma bear mode and said "ARE YOU DONE YET?????" She finished up in a hurry. I would fall asleep holding their bassinets. I remember the first time I held them both. My DH said it was the first time I relaxed in six weeks. They went home on apnea monitors, caffeine, and reglan. At 6 months, I took them off, against medical advice. They're fine!!!!! They are still a bit delayed, but what the heck!!!!
heartmama's Avatar heartmama 01:59 PM 05-10-2003
meg, yes it is, please see my post above.

Hospitals are usually anti ap to the point of neglect IMO, of the basic needs of infants and children.

It isn't just that they fail to provide a nurturing environment for babies, but they actively discourage parents from providing one either.

It would be nice if hospitals supported ap, but I would be satisfied if they simply attended to the physical needs of the baby (that necessitated the hospitalization) and then let parents do the parenting, without getting in our way.

I guarrantee that if hospitals provided a minimum of parental amenities-- a locker room, shower, and cots, and unrestricted access to the baby, they would see hospital stays shortened and the overall hospitalization perceived as a much more positive, secure experience than it currently is for most families.

It is absurdly shortsighted that hospitals treat infants as solitary patients--as if they checked themselves in, or will care for themselves once discharged. A hospitalized baby means a hospitalized parent. Once hospitals recongnize that, they can get busy appreciating the boon such an unpaid personalized caregiver brings to their facility, and learn to support and enjoy our presence.

Off my soapbox....
Gemini's Avatar Gemini 11:37 PM 05-11-2003
Thanks for starting this thread!

Wow, I'm so surprised to hear about your hospitals being so non AP. Our experience was just the opposite.

I was due Feb. 1, 2000, and because of something abnormal found on the first ultrasound at 19 weeks we had a follow up u/s at 31 weeks. The issue at hand had resolved itself but heart decelerations were found with each of my Braxton-Hicks contractions (always have them with every pregnancy early on). So I had to go get a non-stress test done at the hospital which was connected to the office I was at, by the way the date was December 1, 1999 (9 weeks before my due date). My hubby and I walked over to where we needed to be without any concerns really and no sooner than the monitor was on my belly did my baby's heart rate drop to the 60's! I thought they were gonna do the emergency c-section right then and there!
Well, my doctor tried to put me on MS to stop the contractions which it didn't touch (I didn't think it would), so that's when my doctor decided to do the c-section (so yes, I do get the reference to a semi emergency c-section! my baby needed to come out, but not immediately, so she was able to take her time).
Our dd was born 3 pounds 4 oz, and actually did very well those first minutes. My hubby actually got carry her upstairs while I was stitched up and put into recovery (with doctors and nurses in tow of course).
But from the get go she was in the Special Care Nursery and not the NICU and never needed oxygen. The issues she did have were that she needed a platlet transfusion, her blood sugars ran a little low for a few days and she needed the bili lights for about a week. She was in for a month to learn how to eat mostly and gain weight. I pumped like a mad woman and got wonderful support from the staff to take her out and get to hold her to breast, but she just couldn't get it yet or handle my let down (she would let it squirt all over her face with a grin!) The nurses would let me stay all day, I'd get there at 11am and leave at 9 at night. I'd get to take her out every 3 hours to feed her than I'd just watch her sleep in the recliner right next to her isolette. They let my hubby and I do "kangaroo care" with her often and they wanted us to! The staff was so great and helpful the whole time. I'm so sad to hear about you gals with yucky experiences!
My dd is 3 1/2 yo now and doing great. She did get diabetes last year, but that's not a preemie issue. She also got glasses last November.
I didn't really get too caught up with her milestones since I knew she'd be late. I just let her do her thing when she did it. Don't think she walked til 15 months, no good talking til well after 2, but we had the privledge of doing testing to see where she was at, and she was always a little bit behind, but she's up to par now!
Quirky's Avatar Quirky 12:48 AM 05-12-2003
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's Avatar ellery 01:03 AM 05-12-2003
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's Avatar momoftristan 05:13 AM 05-12-2003
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's Avatar untomySelf 11:58 AM 05-13-2003
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 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.
JesseMomme's Avatar JesseMomme 02:10 AM 05-14-2003
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's Avatar khrisday 03:10 AM 05-14-2003
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's Avatar Periwinkle 01:55 PM 05-14-2003
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's Avatar Quirky 03:45 PM 05-14-2003
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's Avatar Periwinkle 12:21 PM 05-17-2003
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's Avatar stretchmark 12:59 AM 05-18-2003
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,
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