Parents of former NICU or Preemie babies ???

[Periwinkle]

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!!! :eek

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]

:hug 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]

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 does...post 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]

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]

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]

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]

:hug :hug :hug

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. :hug 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. :crying

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.)

:hug :hug :hug mamas!

[Justice2]

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 height....so 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 tiny.......as 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]

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!

Heartmama

[mojomom]

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]

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]

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]

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]

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]

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!:love

[Lady of Z Lake]

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]

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]

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. :D 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!!!!!:love They are still a bit delayed, but what the heck!!!!

[heartmama]

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]

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]

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]

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. :thumb
My precious little miracle was born at 25+ weeks after my water broke at 23 weeks :jaw. 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 :love born at just 2lbs 0.5oz and 13.25in long his apgar scores were 2/6 :eek. 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. :crying 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 :banana :banana :banana. 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) :balloons 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:grouphug

[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. (http://www.angelfire.com/ny4/columbia79/Birthstory1) 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)

:hug 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 :) :grouphug

[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]

:crying 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 one-year-olds! They are both total cuties! :love

:banana :balloons :banana :balloons :banana :balloons :banana :balloons :banana :balloons :banana :balloons :banana

[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!!!!

:champagne :balloons :love :champagne :balloons :love :champagne :balloons :love

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. :grouphug :grouphug

[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. :love

:hug :hug 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]

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.

[charmarty]

Allison74~You said somethign that caught my attention.
I had to stare at my own demons from being a preemie right in the face.
Do you remember being there?Can you elaborate?Would you share this with us?Maybe it can help all of us.

[Katana]

I'd be happy to share.

As I said in my first post, my sister and I were born at 32 weeks.

I do have choppy memories of the NICU. When I was smaller, I'd have these dreams about bright lights, and discomfort, and fear. Mostly, I just felt so alone and so displaced, in these dreams. I knew I was in a hospital, but I didn't know what I was doing there. They faded as I got older. But I knew, somewhere inside me that I was remembering my early days.

When my daughter was born at 35 weeks, it was like history was repeating itself all over again. I didn't want her to ever be alone, or lonely, or seperated from me. And she was, for 9 days. I had to fight to get into that NICU, every single time. I had to fight just to hold her for 10 minutes. I had to go home and lay there at night and know that I didn't know what they were doing to her, what they were injecting her with, what kind of outcome there was going to be.

I had to consider that maybe she would never bond with me, like how I have never bonded with my mother. I had to take all my panic and grief and try not to let it be on my face or in my eyes when I was with her, because it was so short.

I was so afraid she was going to think I didn't want her or I didn't care because I wasn't by her.

I don't think it's like this as much anymore, but when I was smaller, there was a stigma to being born premature. No matter what age my sister and I were, people were constantly asking, are they up to par, are they normal, are they doing what they should be? They were still asking, when we were 18 years old. :eek

Whenever something went wrong with our health, or in school, or wherever, it was blamed on our 32 week delivery. We weren't expected to be smart, or accomplish anything of note in our lives. And people said the rudest, most insensitive things. Someone once said to my mom, they put you under such stress, maybe it would have been better if only one of them had survived. :(

So all the hard and sad times in my life were battling with the part of me that said, it doesn't have to be this way with her. She knows she's loved, and you're going to make sure she always feels that way. It doesn't have to be how it was with you, make it different.

That's what I've tried to do with her, just make sure she knows she's loved, and safe and there's nothing to be afraid of. That she is worth everything to us, and that she can do whatever she wants to do.

One day at a time.

Hope that makes some sense.

BTW, Charmarty, your girls are two days older than mine. Charis was born October 24, 2000. :)

[charmarty]

Allison74~Thanks so much for sharing you story.
It breaks my heart though. I am sorry you and other babies have to start life this way.:crying
Your DD is very lucky to have you.



Our Preemies will be 3 soon
:jaw
Can you believe it??????????I cant!Do you or anyone else here for that matter ever go back to the NICU to show off?I just cant bare to go back there.Been there once to visit momoftristan and her wonderful baby boy and that was enough for me.I just focused totally on them.Have no desire to go back for any other reason though.My Godson was an exception :love .


Peace

[Katana]

Thanks for reading, Charmarty.

It is actually pretty healing to write about either my or dd's birth. This thread is so amazing. I'm either :D or :crying whenever I read it, but I think it's so wonderful. All of the mothers here are so strong and brave and amazing.

Originally posted by Charmarty
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!

I love this, and knew exactly what you mean. I feel the same way. How are your girls doing? I've caught some things here and there in the Vaccination forum, and it seems like things are going in a good direction for you. I hope so.

I can't believe that my baby girl is almost three. It is amazing how fast the time has gone. I haven't been to a NICU since the day she left it. I know they would have loved to see her progress, but I just couldn't do it.

I can't even look at her medical records yet. That's my goal for the fall. To look at her records. They've been sitting in the closet for a couple of months, as I finally made myself get copies of them.

Everything is still so fresh and raw sometimes, even though it has been almost three years. I just need a little more time. I'll get there, baby step by baby step.

As we all will.

:D

[aquarianangela]

i posted on life with a babe and noone knew of any preemie threads. i delivered by csection on july 13 my 32 week girl -i had broken my water 2 days earlier. she was breech. csection extended into classical csection. she was in the hospital for 3 and a half weeks. i have a lot of anger and grief and nowhere to express it. it doesn't help to read all of the AP books which all devote chapters to the natural birthexperience being an integral part of bonding etc with the newborn - i feel guilty that my daughter didn't have it and angry that i didn't experience it. so i feel like i will never be totally AP. the NICU staff was okay but despite extensive lipservice to breastfeeding they didn't go out of their way to support it. just pumping at her isolette was abig deal. one nurse fed her formula because she didn't look in the freezer to see if there was any frozen ebm and i was a whole 20 min late for her feeding (had to go interview a pediatrician since i hadn't chosen one yet) so i walk up to find her getting formula! after that feeding she didn't poop for 2 days and then had a dark green major blowout! grrr. they didn't want to send her home until they knew she could feed but if i wasn't right there when she woke up would tube feed her so finally i spent the night in an empty room there and fed her around the clock so they would see she could survive without tube feeds and bottles. i insisted if they fed her orally they had to use a syringe and not a bottle and half of the nurses didn't even know how to do that! she had ivs in both elbows, both feet both hands and scalp as well as a uac. every morning i came in to find a new iv site my heart just broke. she had rds and a collapsed lung and got a chest tube and was on the vent. it was heartbreaking. and i admit i got a little sorry for myself when i would see new moms going home with their babies and lots of flowers etc - nobody sent me flowers! all i got was a scar and the luxury of pumping every 3 hrs. and the thing that made me maddest was all the nurses etc would say "you look tired you need to get some rest!" how was i to rest - between pumping at night so i wouldn't lose my already not great supply and trying to be there all day to try to feed her there was no time to rest! you have got to be kidding! i also am bitter that i didn't get to experience a full term pg and birth - i feel like i was so unprepared for all of this and no one understood that. okay done with my vent - despite the above i am truly grateful for my little one - she was 3lb 15 oz at birth and yesterday was 5 lb - she is still on oxygen and monitor but i leave the monitor off half the time because the leads just won't stay on and she sets it off all the time because of that. peace to us all, angela

[Katana]

Angela,

:hug :hug

Strength and love to you. I know this is so hard. I can relate to so much of what you wrote, especially the part about not being ready for this to happen and dealing with NICU 'politics' as I like to call them. And, the worry about not bonding.

I don't believe for a second that you can't be really AP because you had a traumatic and early birth. It would be wonderful if every woman could have a gentle, perfect birth. But, as all of us on this thread know, sometimes that is not to be. And that is okay. I truly think that it's about what you do once you get your baby home, and the way you treat them there. It's not just about the birth, it's the whole parenting experience.

The memories from the birth and NICU may never fade completely, but I promise, they will become bearable, after time. I know that might not mean anything right now, as the shock and upset of the birth are probably foremost in your mind. But hang on, it's going to get better.

Feel free to vent, cry, laugh, whatever you have to do. Whatever helps you heal, do it. And please feel free to PM me if you ever need a listening ear.

Wishing health and happiness to you and your daughter.

[Staceyhsmom1]

well I just found this thread as I just realized a tribe could be a concept not just a location!
My heart ang hugs goes out to all you strong strong mommas and your wonderfully strong children!
My dd's birthday was pretty shocking and I never knew I could be so strong, so strong that I think I still haven't let down my guard, kwim?
My dd, maegan rain, is everything to me!
dh and I have a 9 yr old son, born c/s cuz he was 10 days overdue and a big baby and we just plan didn't know anybetter. When I was prego this time we both wanted things better, so be took birthing from within classes, hired a friend who is a doula, had a birth plan and was trying for a vbac...well after 12 days overdue of no signs of labor and I was leaking fluid, I decided to be induced, but after 2 hrs of petocin the pains were so strong and kept on being so strong for hours later dr's decided to c/s dd. She was born at 1:15am and I was very nervouse cuz ds c/s was very tramatic and painful for me. DH was so awesome and supportive and he woke me so I could see dd all wrapped in a towel? before they took her away to the nicu. back in the recovery room DH told me she wasn't breathing upon delivery and a nurse ran up to the dr's and slapped the baby's feet to get her to cry and she also had miconium complications. But dh was told she would be fine. I was dozing in and out on the recovery room when a 'matter of fact', ie mean) dr came in while my dh was outside getting something to eat and told me dd may not survive, dh walked in as dr said this and dr said the next hr would tell all. All I could think of was we have an hour, and I thought of the changing table topped burea dh spent months refinishing and all the cloth diapers I had bought and we had an hour, over and over again, and my dh squuezed my hand so hard and dropped to the floor, crying, and I felt like I had to be strong for dh, as he was for me during labor. My dh was a wreck, he couldn't talk or think or move. I told him we had to wait the hour and if things were that bad I would think they would let us be with her. Well after an hour a nicer dr came in and said things look better but the next few hours would still be touch and go and we could see her soon. We did around 6am, she was 6 lbs 15oz in the nicu, pretty big compared to all those precious premes. She had tubes everywhere, both legs, and arms, and down her thought. I forget all the tech terms, but she had miconium in her lungs, had punctured one lung and had been covered in it too. They had never seen a baby with this much miconium ever. the dr said they had to restrain her to get the iv's in. We could touch/stroke her though, her eyes were asleep, then wide open and she knew us and we knew she didn't belong there, she was off the heating pad that night and off oxygen. by Sunday pm she had no tubes or iv's in her and mon pm she went into my room. I went to see her every 3 hours in the nicu and breastfeed, i was so tired, the nurses were worried about me cuz I never slept, I became supermom for my baby, I just snapped into the role and knew I had to go to see her as much as possible. One nurse in the nicu tried to stop me from coming so much and tried to give dd formula, well it was awful and emotiional for me, but dh stuck up for us and complained. She has no side effects, she is now asleep, but she is perfect and even started crawling at 5 months. For her 6 month b-day I want to send in pics and a fruit basket to the nicu.
I am worn out! Thanks for letting me share.

[Periwinkle]

It's time for a big ol BUMP!

I've read sooo many threads recently about hospitalized babes and/or preemies, that I thought we should revitalize this one.

Please share your story or give us an update!!

[momoftristan]

It's been a long time since I have been on the site. I apologize for not posting updates sooner. I love so much to hear how everyone is doing with their miracles. :angel
My little Tristan is not so little anymore, it's hard to believe that in just 4 months he will be 2 years old. It seems like just yestarday when I brought him home from the hospital after a very lengthy 5 months stay.
A quick recap, ds was born at 25+ weeks, my water broke at 23 weeks and I was on bed rest till he was born. He was 2lbs 0.5oz and 13.25in long.
He had a PDA that was ligated, RDS, BPD, ROP which required laser surgery, bilateral hernias, NEC, GERD and severe jaundice. He was on a high powered oscillator ventilator for a week to a conventional ventilator for the next 4 months, then on to CPAP for a total of 4.5 months on oxygen. He required a feeding tube for 5.5 months. :jaw
He is now 25lbs and 30in long, running, screaming, babbling, climbing and doing everything a boy his age should be doing. We are very fortunate that his only complication is he is very near sighted and has to wear glasses. :)
We are blessed with such a little miracle, we thank god everyday and pray for all those still in the NICU.
If you would like to see some photos, please feel free to check out his website
[url]www.babiesonline.com/babies/t/tristanjws/
:grouphug

[Len]

Hi, momofTristan!
Thankyou for letting us know how your little one is doing! He looks great in the pics, very handsome and pretty active....
I can't believe two years have gone by.... time goes by so fast.

[tofumama]

I am so emotional right now, I don't know if I can type through the tears...all of your stories were beautiful, courageous, and touched my heart. Thank you all for sharing... I stumbled upon this thread accidentally, but I can relate...
My dd was born at 35 weeks. My water broke, and I called my midwife and off to the hosp. we went. It was a small hosp. and they wanted to transfer me to another larger one, b/c they expected complications, and they (hosp. staff) thought I was only 34 weeks. ( my ultrasound had put me at 35 wks) My midwife fought them for me to stay, saying I was strong, as was my dd. I was so scared, I wanted to be with my midwife, not some sterile Dr. who wouldn't respect my wishes. Plus, dh delivered my son, and my midwife had agreed to allow him to deliver dd. So after 20hrs of labor (with pit. ugh) and 2 pushes, my girl was born, into her Daddy's hands, weighing 6lbs. 10oz. (big girl!) I did get to hold her, but they took her away after a couple mins. and dh went with her. There was no NICU at this hosp. (which may have been a blessing in disguise) She had dangerously low blood sugar, so they gave her formula (aaah!) and they wanted to monitor her all the time, I fought to have her in my room with me. I was trying to nurse her, but she was so tired, it was hard for her. Her sugar kept dropping so they told me if we didn't supplement, they'd have to put in an IV. So, I did. My midwife was SO great. She came in and said 'do whatever you need to to get her out of here and home with you. Then get in bed with her, and don't get out, until she nurses. You'll both be fine.' Promising to feed her the bottles (yeah right) We were released after only 3 days. They detected a heart murmur, and wanted her seen by a specialist, so the following day we saw a pediatric cardiologist. (our Dr. is the best in the area...it pays to have my mom around- she's a pedi. nurse!) Lilly has mild pulmonary stenosis, which at last check (7 mo) is getting a little worse. No surgery or meds. yet, they are still just watching. She also has a hole in her heart, that they are hoping will close on its own, or surgery will be neccessary. She cried almost nonstop for the first 5 mo. of her life, and had a pretty bad case of reflux. But she was a champ nurser, and I love her more than words can say. She will be 1 in March, but is already 27 in. and 20+lbs!!! I thank Spirit for her life every day, she is a miracle and a gift. It could have been so much worse, we were so very lucky.

[Len]

Tofumama :hug
thankyou for sharing your experience with us.... It must be so hard for you, but you are an awsome mama. I wish you the all the best for Lillys full recovery, she is so lucky to have you as her parents!

[birdinhand]

we have a story to share, but nursing. i have felt strengtened by your storys. i will try to post tomorrow.

[wende]

I'm just seeing this thread for the first time and I wanted to share my story. It will be long :)

Kaiden is the 4th of my babies. My oldest dd was born 9 days past my due date, I was 15 years old. She was 9lbs, 13 oz. My next dd was born 4 days past my due date at 6lbs, 15 oz. I was 18. My first ds was induced 12 days early (I was severely uninformed about induction at the time) and was 7lbs, 8oz. I was 22 years old. All 3 of them were perfect, healthy, amazing children. I had very uneventful pregnancies. No morning sickness, no hearburn, I was adorable pregnant (the basketball under the shirt syndrome) I loved it! My oldest dd latched on right away and nursed until I went back to work when she was 6 months old. My next dd didn't enjoy nursing. She really hated being that close and when she was 6 weeks old I had my wisdom teeth pulled and was told I couldn't nurse with the antibiotics and pain killers they gave me and so she was given a bottle. Sadly, she was much happier that way. My first ds latched on quickly and nursed until he was 2 when I weaned him, much to his dismay. All 3 of the children were born easily with no pain medication. I was made to have babies! When I got pregnant with Kaiden I decided I would go with a midwife. There was no reason not to.

My dh had been begging me to have another baby and I kept telling him that it wasn't the right time. I'd just gone back to school and was only in my first term. Finally I agree'd saying that he had 2 months to get me pregnant. If it didn't happen I was going back on the pill. That way I would have the baby in the summer and when it was time to go back to school in the fall the baby would be old enough that I could take him with me. My dh took that challenge and fulfilled it! The morning before finals I went in and had a pregnancy test done. I just "knew". It came back positive and I went on to finals glowing and happy. I aced it!

I waited 2 weeks to tell dh. It was going to be his Christmas present but I couldn't hold it in anymore. I wrapped up a big box of rocks with a pillow on top and the pregnancy results on top of the pillow. I pulled him into the bedroom and told him that the kids couldn't see the present, that it was very private. I pulled out the video recorder and recorded him opening the gift. It took him a minute to register what was going on and then he started crying. He was so happy! We found something for the kids to do downstairs and went to make love. As soon as I laid down something didn't feel right. I ran into the bathroom and blood was running down my leg. Ryan came in a little bit after me and didn't know what to say or do. We thought we'd lost the pregnancy. I took the kids to my friends house and went to the ER. They did an ultrasound and blood work and said my hormone levels were great. The pregnancy stuck and they weren't sure what was going on. I went in for another u/s the next day and went to see my midwife for the first time (my actual 1st appt wasn't for 2 more weeks). She said that it appeared that I had lost a twin, that I would continue to bleed for a few days, that I may still lose the one that stuck, and to be prepared. I prepared and prepared. The bleeding stopped...and then started again worse than before. More blood work. My hormone levels were unusually high, my midwife didn't know why but she was concerned. She told me to take it easy.

I made it to 12 weeks without many more difficulties. My midwife sent me to a specialist for another u/s and they found a mass. They weren't sure what it was but it was growing. That thing that they originally thought was a twin was getting bigger. They couldn't explain what was going on. More roller coasters. I continued to bleed a little bit and was put on modified bedrest at home. I quit my winter term at school and started taking care of myself. By the time the spring term started I was feeling great. I was past the point of miscarriage. I was able to be up and about. Nothing special had happened so I enrolled in a couple classes. Two weeks after classes started I was at home and I stood up and gushed blood. I was back at the midwife's and then to the specialist. I was told to prepare for a spontanious abortion. The baby wasn't going to stick. There was nothing we could do, but I may as well take it easy anyhow. I made it to 20 weeks. I found out I was having a boy. I was still, all this time, preparing not to ever be able to parent this baby and would not allow myself to bond with him. My emotions had been so up and down that I just couldn't. Finally my dh said that I needed to be strong, the baby was going to make it, and I needed to let myself love him. He was right and so I did.

At 23 weeks I was put into the hospital to be monitored. They thought the mass in my u/s's was my placenta pulling away from my uterine wall. We discussed what would happen if the baby were to be born at 23, 24, and 25 weeks. I told them that I didn't want them to take any heroic measures if he were to be born before 26 weeks but it didn't matter because he was going to be just fine. I prepared myself to have the baby early and not survive anyhow. They told me that it was highly unlikely that I would be able to have the baby naturally and to prepair for a c -section. I spent most of the next 9 weeks in the hospital. They allowed me to go home a couple times but I always ended up back in the hospital. I was on fetal heart monitors and the contraction monitor morning, noon, and night. I was given shots every 3 hours. I was having blood work done regularly. I got very little sleep. I was on magnesium to stop my contractions. It took quite a while for the magnesium to work well enough so that I could be taken off of it and given (brain fart) some pill that stopped my contrax. I was finally sent home with a prescription for the pills and was told to take them every 4 hours.

When I was 31 weeks, 3 days, I was having contractions. I felt great and knew that the baby was going to be just fine. The pills weren't stopping them this time and I knew that Kaiden was ready to be born so I went about my day. I packed a bag and finished up the things that I needed to do. When dh woke up for work I said "you need to call into work, it's time." He started to freak out and I reassured him that it was going to be just fine, there was no rush. He said "ok, then I can have a cigarrette?" LOL. I took my kids to my friends house and went to the hospital. They hooked me up the the contrax monitor and they stopped! I was dialated to 1, but they weren't concerned. I was sent home.

The next morning Ryan went to work and I went over to my friend's house. It was her mom's birthday and I was tired of laying around the house all day, I decided to go lay around hers :) That afternoon I'd been having contractions all day but they weren't bad. I'd have one here and there but wasn't about to go back to the hospital just to have them send me back home. My friends mom was a doula so she kept me relaxed and smiling. By the time my dh showed up to pick us up I was laying on my friends bed in pain. He asked if we needed to go to the doctor and I said "oh, let's just see how these next few contrax feel". When I couldn't talk through them I said "ok, we're going!" When I got to the hospital the specialist came in and checked my dialation and said "oh, that's no good". I was dialated to 5 and he could stretch me to 7 during a contraction. He said "well, we can possibly buy you a couple days if we put you back on the magnesium. It may not work, though and at this point you need a couple of weeks to make any difference at all". We decided to just let it happen. We did want to buy a couple of hours to get antibiotics in me, though, and I have a history of VERY quick labors and deliveries. I was worried that I would lose my cool and allowed them to give me an epideral. My doctor came in a couple hours later and checked my cervix and said "ok, time to go". We headed to the O.R.

In the OR the doctor broke my water and my contrax stopped! They finally started back up and with just a couple pushes Kaiden Ryder Malone was born into this world, pink and pissed off! He was beautiful and my first words were "OMG look at how big he is!" My doctor said "yeah, he's probably about 3 1/2 lbs." I just shook my head. They took him away and rolled me back into my room. It was a few hours before I found out any info about him. When I finally did hear, I was ecstatic. He was born 4lbs, 8oz and was 17" long. His apgar scores were 8 and 8. His gestation was 31 weeks, 5 days. He was perfect!

He never needed oxygen and was breathing on his own from the start. He had some jaundice issues and was under the bili lights for a bit. He couldn't keep his temp up so was in an incubator for most of his NICU stay. He took a while to learn the whole suck, swallow, breathe thing. He was only hooked up to the mandatory machines that they have on all the babies though. He was the biggest baby in the NICU. I pumped, and pumped, and pumped like crazy to make sure that my baby was given as little formula as possible. I had an overflow of ebm in the hospital's freezer! They told me I could have fed all the babies there, lol. It was difficult though, with 3 other kids. They didn't want my kids in the NICU all the time, but I couldn't go w/o them usually. Also, I thought it was very important for the other kids to bond with their brother. The kids and I went to the NICU once a day and then I went alone once a day. There were plenty of times where I went in there and they had a tube in his nose and the feeder taped to the top of the incubator. Plenty of times I had to remind the nurses that I was planning to bf and that if they knew I was coming NOT to feed him and could they please at least hold him while they fed him? Of course, they were busy with other babies, blah, blah, blah, and he would probably never nurse exclusively, blah, blah, blah. There were days when they wouldn't let me hold him at all and we could only touch him for a short period of time. Most of the nurses refused to let the kids hold him and reprimanded me when I allowed it. I did not feel like his mother most of the time and more like a visitor.

After 3 weeks in the NICU I was allowed to take Kaiden home. He was still not keeping his temp up well, so even in the hot of summer I had to keep him bundled in layers of clothes. He still wouldn't nurse regularly so I was still pumping like crazy and giving him bottles of ebm. After being home for 2 weeks though he was nursing exclusively and to this day, he is exclusively nursing. In fact, I can't get him to take anything other than mommy milk! He caught up in length and weight and at his doctors appt's they don't don't adjust his size because he's such a big boy. In fact, the other day when someone asked how old he was and I said "8 months" they said "wow, he's a big boy!"

He is healthy, happy, and sooo smart! He is developmentally right where he should be for his adjusted age. He will be 9 months old in 11 days and he is just starting to sit up on his own and has begun pushing up on his toes but not crawling yet. He rolls all over the place and thinks he's very funny! He "talks" like crazy and laughes all the time. He is amazed by his brother and sisters.

I feel like as soon as I allowed myself to become attached to him he spoke to me. He let me know he would be fine and that everything happens for a reason. Because he was born prematurely he was uncirc'd and I allowed myself to become informed on circing. My experience has also brought me to decide what I want to do with my life. I've decided to become a midwife. I think that the communication between a mother and a child is amazing and important and doctors don't always encourage or nurture that. I'm grateful for his early birth, there was a reason for it, and he is just an amazing little boy.

Check out Kaiden's growth here. (http://www.kaiden.aboutmybaby.com)

[lunchbox]

My dd was born 3 weeks early but weighed 9 lbs 15 oz! She as diagnosed with pathologic jaundice, which is quite rare. It was the result of a blood incompatibility between her and I. After 4 days at home, we were rushed to a NICU in Atlanta because her bili level had soared to 28.5.

She spent 5 days there, and received a double transfusion and was on constant lights. You should have seen how HUGE she was compared to all of the other NICU babies.

The NICU nurses were EXTREMELY supportive of BFing. In fact, when they saw that I was determined to BF on demand, they allowed us to use a room to stay in since we lived so far away. They would call me on the phone every time she cried so I could feed her. They helped me with positioning (hard with all those tubes and wires) and with her latch. I have to say that they are primarily responsible for our BFing success (still going strong at 23 mos!).

I felt so blessed to be taking home my big healthy baby after only 5 days. There were so many babies there who had been there for months, and some who wouldn't come home at all. :(:

Lucy was diagnosed as hypotonic at 2 mos. Our ped suspected brain damage (kerinicterus) from the high bili levels. An MRI at 4 mos determined there had been no brain damage and she grew out of the hypotonia.

At 23 mos., she is 43 lbs and 38.5 inches tall. :eek

[eilonwy]

Wow, i've never seen this thread before.. :LOL

My EliBean was born at 37 weeks (39 by my math, but that's a whole different discussion) and spent a week in NICU due to the chorionamnionitis we developed (prolonged rupture of membranes). He hypervenitlated and retracted the whole time, indicating an infection in his lungs and the placenta tested positive for infection. It was the longest week of my life, and I hope never to have to do it again.. :crying. I know that lots of people have to deal with more, and I admire their strength; I had such a hard time dealing I don't know if I could do it again. :(

[edamommy]

We live at high altitude (11,200feet) and during my 3rd trimester it really affected me. I was put on bedrest for 5 weeks prior to my "induction". I went in for a weekly check up and ultrasound and they decided to induce me then. At what they thought was 36 weeks. After 3 days of awful induction drugs morning and night I was only dialated like 2 cm. SO they broke my water and things started moving quickly. Then my bp sky rocketed. Then his did too and they decided he was in too much distress and did an emergency csection. Come to find out he was really a 33-34 weaker and the cord was doubled around his neck and around his foot. I was very sick during and after the csection. Baylor was flight-for-lifed to a Denver PICU unit and I didn't see him at all for 48 hours!

My nat'l birth didn't happen. My excitment to see him for the first time and to breastfeed him immediatly didn't happen. ALthough he NEVER received formula or nipple of any kind other than human. He was on donor milk for those 48 hours via gavage feedings and after that I pumped and gavaged him and also bf'd him directly if he had enough energy. He was on oxygen for almost 3 months which really sucked. He was moved back to my mtn. hospital after that 48 hrs., when he was stable. And we stayed in the hospital for 17days after that.

I have a ton of hang ups regarding my pregnancy and birth experiance. I feel like a failure as a woman to be honest with you and I cannot imagine ever putting myself or my husband thru it again.

I'm glad to say that, although he's a super high needs baby, he's so healthy and smart now. Not delayed in any way and even advanced in some areas!

:) Kimberley & Baylor (3/7/03)

[TreeLove]

[sofiabugmom]

Glad to see this thread, here's our story:

DH and I got pregnant the first month (please, don't throw things at me!). We'd planned on having a homebirth after lots of research. We met a great midwife and had an equally-great backup FP, and everything was pretty good until just before 30 weeks.

I ended up in the hospital for a week with P-PROM. As far as getting the birth we wanted, we got almost nowhere near it. Hospitalization, three ultrasounds, bedrest, EFM, IFM, lithotomy position, "purple pushing", epidural, C-section. However, since the baby was head down and face down, we realized happily that we wouldn't know the sex until birth. Wouldn't you know that NO ONE on the ENTIRE surgical staff of EIGHT PEOPLE took a look? DH and I were waiting to hear "boy" or "girl", and got silence! A nurse had to go into the resusitation room to find out for us!

DD was 3 lb, 7 oz., and 17 inches long. Her APGARS were 4, 6 and 7, but the highest score was always heartrate (whew!). The whole staff described her as "feisty". When DH went to take a picture for me, she had already grabbed her intubation tube with her left hand and started yanking at it. She gave him a look that said, "Hey, you look like you've got some influence here, GET ME OUTTA THIS!" He never worried about her again.

She spent exactly 4 weeks in NICU, primarily as a feeder/grower. I gotta say, for the most part the staff was incredible. The only issue we had was they were pushing to add fortifiers to my milk when she was gaining and developing just fine without them, thank you very much. She gained a pound and half an inch before she came home.

I've brought her back to the NICU a couple of times to show her off to the staff. She's still a tiny little thing (at almost two years, she's just under 18 1/2 pounds), but we're so proud of everything she's accomplished since her not-so-smooth beginnings. At her 18 month check-up, the docs said she was already caught up on everything but size!

Best to all,

JA & not-so-patient DD 23 mos.

[geekgolightly]

Originally posted by heartmama
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....


As soon as you finish your book, I'll buy a copy!

This is my first post here and I am so glad I found this thread. My Seth was born 35w and was small for gestational age due to reduced perfusion (PIH which turned to pre-eclampsia). He was 4#6oz and apneac (imho he was apneac bc of the mag sulfate and that wore off after 24 hrs.) His only problem was with suck swallow, which was because they insisted on EBM by bottle only, which can drown a child who is only just learning. Nursing by breast is the best way to go... why keep a child in a hospital longer than necessary? He was detained for 12 days total, and only that long because I began to raise the roof.

I was able to get him to breast, but only after a month of trying daily and crying while he was crying and feeling as though I was collapsing from the inside. We finally did a 24 no feed unless by breast and he took to breast after the 17th hour. The longest and most desperate hours of my life thus far.

Until the day I went to the hospital (I started spilling protein, whcih I was checking on my own) I assumed I would have a home birth with the midwife with whom I had developed a bond. To go from the idea of a home birth, to an induced labor with IV's, strangers rushing in and out and having my baby taken swiftly away from me as soon as I delivered was heart wrenching.

I hope that your book, heartmomma, can empower some parents. Even though I am a nurse, I felt helpless against the machine which confronted me. When I go back to work, after Seth's first year, I will go back with an entirely new perspective.

[geekgolightly]

Originally posted by Quirky

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.




This was, by far, the most frightening and frustrating aspect of having my son sequestered in NICU. It blew my mind that these NICU nurses weren't up on the latest literature (meaning 1990 on) and actively encouraging me to hold my son as often as possible. One nurse actually blamed my kangaroo care (which they begrudgingly allowed me to do) on his inability to feed as they wanted him to feed. :demon She said I was spoiling him and I was also tiring him out. he needed peace and quiet to sleep properly. Drove me up a wall!

[eilonwy]

I was encouraged to hold Eli, even when I was still on the Magnesium & very weak and I needed someone else to help me with him. There were always people willing to help me nurse, and he never got a bottle or formula.. but he was much bigger than most of your babies, maybe that's the difference?

[geekgolightly]

Originally posted by eilonwy
I was encouraged to hold Eli, even when I was still on the Magnesium & very weak and I needed someone else to help me with him. There were always people willing to help me nurse, and he never got a bottle or formula.. but he was much bigger than most of your babies, maybe that's the difference?

I think it's more luck of the draw and location rather than how big babies are. I know that in Seattle, a friend of mine just had a baby who will be in NICU for about a month, and they have NICU set up in a special unit so that the babies stay with the moms in a private room. the nurses monitor via computer and are in very close proximity. The moms are encouraged to be as hands-on as possible.

Here in the south, you don't see that as much, if at all (I would love to know of hospitals in the south with stay-in-hoispital mom rooms for NICU pts).

My friend also told me that this is the only hospital in Seattle that has this kind of set-up.

[edamommy]

Just an update as Bay had his one year check up yesterday (he's 13 months). He is 31 1/2 inches long and still just 18.9lbs. The doc suggested that we give him pudding, ice cream, and other high fat stuff?!?! I will party when he finally reaches that damn 20lbs mark. My life is trying to get fat on this kid~

Kimberley

[eilonwy]

Originally posted by geekgolightly
I think it's more luck of the draw and location rather than how big babies are. I know that in Seattle, a friend of mine just had a baby who will be in NICU for about a month, and they have NICU set up in a special unit so that the babies stay with the moms in a private room. the nurses monitor via computer and are in very close proximity. The moms are encouraged to be as hands-on as possible.


:nod That's how it was where I delivered. I was offered the chance to sleep in a room just off the NICU and have Eli with me the whole time he was there. I had to decline because I was totally unable to sleep when he was near me, I was so eager to spend time with him. :crying

How did you ladies deal with not having the birth/labor/delivery/taking baby home situation that you'd planned on? I have to tell you, it was beyond shocking to me not to have Eli room in with me, to say nothing of not being able to take him home... :eek. I was absolutely beside myself. I still am! I can remember being given a pamphlet at WIC while I was pregnant (designed for single teen moms-- I look very young. :rolleyes: ) where a girl is talking to another girl and says her goal is to take her baby home from the hospital with her. I looked at my mom and said "That never occured to me, to have that as a goal. I'm sure my son will come home with me." Famous last words, I guess. :(

Seriously --never in my wildest dreams did I imagine this. I told my niece she could visit him when he was born, but it turns out they only allow siblings into the NICU, so she wasn't able to see him. :crying My heart still breaks when I think of this. I was so upset when I found out! :crying She didn't talk to me for two weeks because of it, and we've always been very close. :crying :bawl :crying

I worry about it happening all over again.. thinking I'm going in to have a healthy, term baby and finding out that something's gone wrong and she'll have to stay at the hospital and Eli won't get to see her (he's too young even for siblings and he hasn't had the chicken pox or the chicken pox shot) and my nieces won't get to see her and it'll just spin my head like it did with Eli, only it'll be worse because I have to divide my time between Eli and NewBean.

We had an ultrasound that indicated a potential problem with NewBean's kidneys (it looks like she might only have one) and she'll have to have an ultrasound after she's born to verify. Most of what I've read has been reassuring; she's definately got one working kidney and most people do very well with that. Still, my mind swims with "what if's" and I sometimes find myself starting to panic about it. It was hard enough for me to leave Eli in the hospital, but at least when I was there with him I felt like I was in the right place. If NewBean needs to stay in the NICU, I'm going to feel torn every time, because I'll be with her, but her big brother will be waiting for his Mamma. :crying. I have not told my nieces that they can visit NewBean in the hospital when she's born for that reason alone... what if they can't? :crying

[Periwinkle]

:OT

He is 31 1/2 inches long and still just 18.9lbs. The doc suggested that we give him pudding, ice cream, and other high fat stuff?!?! I will party when he finally reaches that damn 20lbs mark. My life is trying to get fat on this kid

I think this is extremely common, and I'm not sure why, to tell you the truth. My dd has grown like a weed from day 1, but ds has always struggled to stay on the charts. Right around 6 months his growth curve tapered off at 5th percentile! :eek Anyway, at 23 months he is 33.5" and 23.5 lbs... he is pretty skinny, but is a very healthy kid. His height is around 50% I think and head is 75%!!

Anyway, we tried feeding him higher calorie foods back around 1 year, which wasn't a great success - the end result was he got fuller and so ate less. In other words, the net calories were still basically the same. And worse still, he was getting his calories from cheese toast and Kozy Shack pudding and such that he was starting to expect foods like that, I mean all the time not just occasionally. :shake We realized pretty fast that was a disaster waiting to happen, and went back to offering mostly very healthy fare.

But most recently, he has been putting on the weight in the past couple of months. :D He always had "gut" issues for lack of a better word - loose poops, frequent poops, etc etc (sorry.. tmi) - but since starting him on Baby Jarrowdophilus (probiotics) his poops have firmed up nicely and he is up to almost 10th percentile in weight now, up from 3rd :eek at his 18 month check-up.

Here is my PERSONAL opinion of what the problem was... I think his being preemie meant he didn't get that transfer of my immunogloblins and antibodies etc from the start (as this placental transfer occurs at the end of the 3rd trimester) PLUS he had a round of antibiotics (and none since - live and learn) at 6 months which I'm sure wiped out his gut flora. 6 months is when his weight started tapering.

If anyone's interested, there are some great threads in Health & Healing (e.g., Power of Probiotics) which were a great help to us.

HTH.. fwiw. :)

[Periwinkle]

eilonwy :hug

Your post made me want to cry right along with you. I hope your sweet bundle-to-be is healthy and also that you don't have to choose between your two children when the time comes. I know our month-long NICU stay was hard enough as it was, but at least I got to be with BOTH babies at the same time. I never really thought about that side before - my heart really goes out to the mamas who had another little one (or more) at home while baby was in the NICU. :crying

[beaconlighthero]

I've had two Nicu experiences.

My first baby I carried to full term. Perfect pregnancy, vaginal birth, no drugs, just perfect. I had him in my room for about 48 hours (if even that) and they took him to the NICU. Why? Well, when we had him circumsied (I was'nt thrilled about it at the time, but now am thankful) the circumcision would not heal and just bled all day. My husband felt there was something wrong and asked the doctors to look at it. They figured out he had Neonatal alloimmune thrombocytopenia. Basicly while I was pregnant I formed an antibody that was crossing over the placenta and killing my baby's platelets. It is a very rare disorder. Brandon only had a platelet coun't of 11,000 when normal is about 120,000. They told me they were not sure if he was going to live or die. This tore my heart apart, I could not believe it, he looked fine. They gave him a transfusion of doner platelets and he made it through the night. The next couple of days they gave him 2 or three transfusions of my platelets and then he started to build his own. It was so hard going home without him, especially since he was my first baby. I could'nt bare to go home and see an empty crib (we lived in a one bedroom apartment, so his crib was in our room), so I stayed with my mom. Brandon was in the NICU for a week, I could at least hold him all I wanted to when he was in there and touch him. It was hard seeing the tube coming out of his head where they gave him transfusions and he had the wires for the monitors (3 of them) and his little foot was so bruised from them poking it to get blood samples for platelet counts. Today he is a happy normal 6 year old.

With dd we knew she would probably be in the nicu, because she was certain to have the same problem. They gave me a treatment called IVIG for 10 weeks to try to slow down the antibodies that were crossing the placenta and killing the platelets. They took Hailey by c-section at 32 weeks so that she would not get any internal bleeding (the longer you keep them in with this disorder, the more the baby is at risk of getting an internal bleed and dying, my son was very lucky).

She came out great, she was 3 pounds 10 oz and the steroids must have worked, because she could sure scream. I got to see her for a few minutes before they stiched me up. Her platelets were fine and they gave her a little bit of oxygen, because she was breathing fast, but other than that they said she could probably breathe room air. They gave her 3 days of IVIG (one treatment a day) and she had a feeding tube she pulled out after 2 weeks and of course the wires for apnea, heart, etc... and a tube in her arm (she had it in her head for a day). Again it stunk to go home without her, I cried when they released me from the hospital.

I could touch her in the isolett, but the nurses told me when I could take her out. That stunk. This one nurse would only let me hold her for about an hour. That was heartbreaking, because I lived on the other side of town and that was the only time I would be there to see her, I could not be with her as much as I was with my son (he was born at a different hospital). It was even worse when she was moved to a crib, because they would cover her up and I could not see her just to sit and look at her. I took comfort in knowing that this was a sign that she would be coming home anytime. Hailey was in the NICU for 3 weeks and came home on an apnea monitor. Thankfully the alarms that did go off were all false. She is doing great today, they don't even have her on the preemie chart.

[beaconlighthero]

:lurk:

[Boobiemama]

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 ha