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Support for parents of preemies & NICU babies, #2

post #1 of 284
Thread Starter 
A new thread, to be smaller and less intimidating to new members. The old thread is here if you'd like to read it.
post #2 of 284
Subscribing to this one . . .
post #3 of 284
I am so glad to see a thread like this. All my children were born premature 40 wks to me is a myth. I got to 35 wks with my son Edan(my only living son born medication free!) he was 7 lbs 5 oz I was so proud. I have had ~20 wk twins~, 29 wk twins, a ~23 wk son~ and a 24 wk daughter. I have spent more time in SCN's as we call them up here then anyone I know. I am also dealing with many preemie issues like the long term effects of ROP, very mild CP and learning delays. I feel so blessed to have my healthy babies though I know we are truley lucky to have these babies with us. Come on NICU mommies lets chat! :
post #4 of 284

I have cut and pasted my story here

Hi all,

I am in tears having just read all of your stories. I am another one who didn't expect to not take her baby home with her.

I had an awesome pregnancy, wasn't sick, felt great, swam up until the day I went into labour. Labour wasn't even that bad.

I was nearly at 42 weeks when I went into labour.

I had been in labour for about 18 hours by that stage and was fully dialated, but had no urge to push. My dr. was on vacation (she had warned that she was going to be away during spring break at my very first appt and we had joked at the time that I would definately have my baby then) and the OB who was covering for her thought that breaking my water might allow her to move into position and allow me to need to push. (Breaking my water was the only invervention that I had had at that point)

When they broke my water, everything started to break loose. I looked as though I had pooped myself. My water was brown and thick with meconium. They figured that she had had some type of stress at least a week prior and had been practice breathing the meconium for that entire time.

Her (we didn't know the sex at this time) heart rate started decelerating with every contraction and we decided to go with the emergency c-section. There were two drs. an OB, four nurses and an anthes. in the room. The Anthes was trying to make me laugh by cracking stupid jokes ( I don't think that they realised the seriousness of her problems at that stage).

When they got Jade out she was green from soaking in meconium for so long, the inside of my uterus was green. They pumped her lungs and stomach and got a greater volume of meconium out than a newborns lungs and stomach could possibly hold. They literally ran out the door with her, giving me a 10-second look as they raced to the nursery to get her on o2.

DH went with her leaving me alone in recovery in serious denial that I had even had a baby, let alone one with serious problems. By the time I had made it back to the mat ward, they had arranged for a paediatrician and transport team to fly in to bring her to the nearest major centre.

When the paed. came in, he told us that she had a 15% chance of even making through the night and if she did there were so many potential side-effects - CP, brain bleeds, seizures etc etc etc. They were going to put her on an occillator ( sp) which is a super-industrial strength ventilator which shakes to help force air into the lungs. If that didn't work they were going to have to do heart-lung bypass surgery to place her on a machine called ECMO ( extra-corporeal membrane oxygenation) to breathe for her.

ECMO works by inserting two catheters into the jugular vein, down to the heart, one brings old blood out and runs it through a circuit to re-oxygenate the blood and the other brings the new blood into her body to help her breathe.

She did really well on this and was off in five days ( they had told us that she would be on it for two weeks) and on a ventilator for a week after that ( had been told four weeks for the vent). She did amazingly well and was out of NICU and SCN after a total of five weeks.

I have been amazed by the stories of non-AP hospital staff that the majority of you have experienced.

My experience couldn't have been more different that yours. As soon as Jade was disconnected from the tubes in her belly button ( were using those instead of IVs) I was able to hold her and could hold her as much as I could. Every dr and nurse encouraged me to pump, bring her to my breast, hold her spend as much time as I wanted in the nursery.

When the only reason that she was still in the hospital was because she wasn't eating they actively tried to discourage me from bottle-feeding my EBM to prevent nipple confusion. I had been getting major pressure from DH and SIL to just give her the bottle so we could get out of there and try and get BF established at home.

I had not had any problems pumping and ended up donating over 1000 oz to the milk bank and got named the "dairy queen"

We got out when Jade was five weeks old and finally got bf established at eight weeks, after working with seven different LCs and OTs.

She is 26 months old, still nursing, no problems at all.

We are truly blessed and like a pp said, definately see the world and parenting through different eyes than I would have without this experience. I believe that Jade is here and went through this horror in order to do amazing things in this world. I have learned so much about the human spirit, the sheer will to live and the incredible strength that these tiny bodies have. I never take her for granted because I recognise the incredible gift that I have been given.

Thank-you all for sharing your stories with us.
post #5 of 284
Glad to start a new thread but hope newcomers WILL read through the old one sometime... it had such good info in it not to mention all of our introductions!

Here is mine cut & pasted from the old one...

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, "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 at all. They caught up completely by around a year. They are 3 years old now and quite a handful but so much fun!

We are blessed to have had another child - just 3 months old now - in a completely healthy and full term pregnancy. Passing the 32 week mark (when I had dd and ds last time) was incredibly emotional for me and brought back all kinds of "anniversary reactions". But having a healthy full term baby is such a blessing and really allows me to both feel good about what we went through with the NICU and preemie infant stage (not to mention twins!) but also allows me to cherish every moment of ds' babyhood.
post #6 of 284
I just wanted to let you mamas know that my first, who was in NICU for 2 weeks, turned 9 years old last Thursday. His relationship with me is unique of all my children, and while it was a rough start, it's been a beautiful ride.

Much love and light to all of you; I remember those memories making me feel so raw for so long...
post #7 of 284
I'm glad to see this forum! I'll tell my story as best I can.
I was induced at 41+ weeks, which I will never do again. My labour went very fast, 8 hrs. from start to finish. Too fast, I think. Ds breathed in meconium, but worse was the heart decels. His cord was bent on his chest and w/ every contrx his O2 was cut off. The L&D team got him breathing and he was doing fine. He wouldn't breastfeed, though. I was told that that wasn't unusual at first. He stayed w/ me all night, but I didn't sleep very much.
The next a.m. he still wouldn't suck, and the nurse took him in to see the dr. and that's when he started to have seizures. My dp was on his way to pick us up, but he walked into the ICN to see his son getting a spinal tap. Ds seized all that day, and stopped breathing often, due to the meds. He was intubated that night and transported to the NICU. I still hadn't slept, mind you.
Ds was in the ICU for a week, and got a little better every day. He didn't "present classically" for what happened, so no one really knew what was wrong w/ him. After the 1st week, he was moved to an intermediate care nursery, and he was taught how to suck (ebm in a bottle). We were there for a week or so, and then he came home (happy day!). I still had to give him cheek and chin support for another 2 weeks, and got him to breastfeed a little @ 6 weeks. He'll only bf when he's sleepy, but I'm pretty happy he does it at all.
The staff at the NICU were awesome and very encouraged kangaroo care as soon as he was extubated. They also gave him all the colostrum and bm that I had pumped. Sadly, he went back to the hospital at 4 weeks w/ a bad case of RSV and was there for a week. RSV totally blows, by the way. I only knew something was wrong w/ ds because he stopped breathing in my arms.
Right around this time my supply just tapped out. He bfs at night and at nap time, and though I pump 5-6 times a day, I can't get more than 3oz. Hellish way to start motherhood, but it really changed my outlook on life- don't sweat the small stuff. I mean, ds breathes on his own and doesn't have a feeding tube in his head, so everthing is right on.
Thanks again for this thread, and my support to you all.
post #8 of 284
I want to post my story as soon as I get the chance, but it nearly bedtime here and I need to read some stories to dd. I'll be back soon.
post #9 of 284
Hi all. Glad to see a new thread going

I posted my story on the other one, just do a short intro here.
My first went into ptl at 31 wks held out till 36 wks, she came home in 2 days she was fine. My 2nd went into ptl at 24 wks, held out for 6 days and had her shy a few days of 26 weeks. She was 1 lb 11 ozs and we spent 102 days in the NICU. She had no major complications and she is almost 8 mths now (4 1/2 adjusted) She's doing great!
post #10 of 284
Subscribing, will share my story later. My NICU baby is almost five years old now!

I had a very good NICU experience, and I am thankful for it after hearing of those who didn't.
post #11 of 284
Hi everyone! Great thread, thanks for starting it.

For a long time, I've hesitated to use the word premature about my first daughter, since she was only 4 weeks early, and not a NICU baby. However, she was quite sleepy for a few weeks after her birth, weighed only 5 pounds 4 ounces, and had difficulty latching and sucking for a couple of weeks. I usually say only that she was "early," especially now that I've had the experience with dd#2. But the reason she is in my sig as preemie is that her early birth turned out to be a signal to me to keep an eye out for #2. I had PROM with her, which ended up happening again.

During my second pregnancy, I started having BH contractions around 25 weeks that were frequent enough that I went to L&D. I had a negative fetal fibronectin and was not dialting or effacing so I was given terbutaline and sent home. At 28 weeks I went in twice in one week, and after that, my doctor gave me oral terbutaline to take on an "as needed basis" and told me to take it easy. I was already on disability from work. I was then scheduled to start coming in weekly. At 32 weeks I had some crampy contractions and the next morning at my OB check I was 50% effaced. My doctor sent me home and told me to keep an eye out for anything unusual.

I went to the hospital that same day because I felt that i was still having some uterine irritability, and they gave me a shot of terbutaline and monitored me and sent me home. A few days later I caught some type of stomach bug that had me throwing up like crazy. I was contracting a lot and took a warm bath and my medication, but neither helped. My husband drove me to the hospital and I threw up all the way there. By the time I got into L&D I was contracting every 3 minutes. They gave me a shot of terb and another shot for nausea. When the nausea settled down, they had me suck on ice chips and try to drink little sips of clear fluid. I was so thirsty that I probably drank too much and got sick again. More anti-nausea meds.

They were able to slow contractions down to 8-9 minutes apart, but they wouldn't stop. They were like that for 3 days. I wasn't sleeping because of contractions and nausea and the huge array of meds (they started an IV, gave me antibiotics, steroid shots, morphine to try to get me to sleep, terbutaline for contractions). The combination of the terbutaline and the IV gave me a rare complication, pulmonary edema (my lungs were filling with fluid). My pulse was racing up to the 130's when I got up to use the bathroom and my oxygen was desatting into the 80's. I was put on oxygen and given a diuretic to get rid of excess fluids. They did a biophysical profile on Hazel, and she looked fine, estimated weight was 4 pounds. I had another fetal fibronectin, which was negative, and a cervical check indicated just a little dilation (from 1/2 cm to 1cm).

I got up in the evening to use the commode (right by the bed because I couldn't walk across the room without getting winded) and when I got back into bed, my water broke. The contraction intensified right away, and after 3 days of no sleep, throwing up, and breathing through a tube in my nose, I was exhausted. After just an hour (I was already 3cm) I requested pain meds and was given nubain. It made me very tired and fuzzy. The labor was very short, and I ended up asking for an epidural and got one, just about 30 minutes before she was born (I wish I had known I was that close, I wanted the epidural so I could sleep!). She came out screaming which made me thrilled, and weighed 4 pounds 1 ounce. Apgars were 7/8.

Hazel was in the NICU for 23 days and needed to learn to eat and gain weight. She failed the carseat test twice and I cried all the way home both times. Because of dd#1, I didn't spend as much time in the hospital as i would have liked, because Mel was very upset and clingy. I had never been away from her overnight and then was just gone for 5 days. I went to the hospital at least twice a day, more when i could, and tried to nurse her. Nursing was a huge struggle for her and it actually took her three months to learn to nurse effectively without a shield. I have very mixed feelings about my NICU experience which I'll post when I have the chance.

Hazel is 5 months old now, and the memories are still fresh and painful. I mourn the birth experience I never had (and the shower, and the belly cast). We're most likely done having children. The good news is that she nurses like a champ now and is over 12 pounds! She has chubby arms and legs, and a double chin. She's rolling over, and trying very hard to sit up, although she still can't do it.

I'm super late this morning so I must go, more later.
post #12 of 284
My youngest was born full term (38 weeks) after a very long and dragged-out labor (after 3 previous births my uterus just didn't seem to want to do the job any more ); at a birthing center within a smallish local hospital. The next day, the new ped in our practice (did her residency in the NICU of a larger hospital south of us) mentioned that DD's breathing did not seem quite right, and that her O2 levels were on the low side. This was our first time meeting the new ped; so we consulted with one of the Sr partners in the practice, who told us nothing was wrong and not to worry. However, he mentioned that they planned to keep her in the hospital for another day or two for observation, just in case.

The next morning, when she was about 36 hours old, our baby's right lung collapsed without warning due to a pnuemothorax. Around 6:30 AM I had changed her dipe and was about to nurse her; and the nurse came in and wanted to take DD to the special care nursery to monitor her vitals for 20 minutes (they had been doing this every two hours as part of her observation b/c I had insisted that DD room in with me). Some time later, the nurse returned with forms for me to sign and gently broke the news that DD's lung had suddenly collapsed; she also explained that DD needed a chest tube immediately, and that a surgeon was on the way to insert it because the ER doc had never done a chest tube on a newborn. I signed the forms in numb shock and started praying. Soon after, the nurse reappeared with the ER doc, who told me that they just couldn't wait for the surgeon; and that he (the ER doc) had inserted a small catheter to release at least some of the air from DD's chest cavity so that her lung could inflate. They were working to stabilize her.

I didn't see my baby again until later that afternoon. She was sedated and in an oxygen tent. She was unable to maintain her O2 saturation and they had no idea why her lung had collapsed...x-rays showed nothing amiss. The pnuemo did not seem to be resolving itself.

The new ped talked to us about transferring DD to the NICU at the hospital where she did her residency. The hospital we were in just did not have the technology to figure out this puzzle. Mentally, I had a hard time with the decision b/c I knew that by agreeing to the transfer I was admitting that DD might never come home. The hospital was an hour away and I knew that I would want to be there with DD; which meant making (possibly long-term) arrangements for the other three kids at home.

The next morning (Monday, DD was born on Friday) she was transferred. When we went to the car to follow the ambulance to the hospital, I lost it upon seeing the empty carseat. I had never before left this hospital without a baby. I saw the ambulance up ahead, sirens blaring and lights blazing, and I just couldn't believe that my baby was in there.

We didn't see her again for several hours. Upon arrival in the NICU, she had to be stabilized again and evaluated. Her case was a huge mystery...nobody had ever seen it before. The neonatalogists just didn't know what to tell us. The good news was that DD didn't appear to have any holes or leakages in her lung. The bad news was, they still couldn't solve the mystery of what caused the pnuemo in the first place. DD received a regular chest tube, because the catheter wasn't getting the air out of her chest cavity.

The next day, DD had an extensive CT scan. Finally, some answers were revealed. Several minute, air-filled cysts (here's a great medical term for you - they call them "blebs") were discovered on the outer surface of her lung. The docs theorized that, due to a congenital defect, DD's lung had been covered with these cysts; and that when she took her first breath and inflated that lung, the majority of the blebs had burst, releasing so much air into her chest cavity that her lung collapsed from the pressure. They optimistically predicted that once all the air was out, the remaining blebs would dissolve without incident and that DD would be fine; but, having never encountered the condition before, could give us no guarantees.

We were able to resume nursing on Thursday; and DD's chest tube came out later that afternoon. She was released from the hospital on Saturday, having lost only 1 oz of her birthweight throughout the entire ordeal! She received follow-up care from a pediatric pulmonologist for a year, at which point a CT scan revealed just one bleb present; and she was declared healthy and released from special care. She has probably been our healthiest child, overall.

We had an excellent NICU experience. Once the nurses discerned that I wouldn't freak out about stuff, they encouraged me to assist with DD's care in every way. I even held her while they drew blood from her head; and they convinced the doc to let me be there when DD's chest tube was removed. DD received ONLY breastmilk during her NICU stay - first in an OG tube, then in a bottle, then straight from the source as soon as it was possible. I was there for 5 days, and never saw one baby receive formula. There is a nice pumping room and a huge freezer, right inside the NICU unit; and the nurses and docs encourage ALL mothers to breastfeed their babes. Never once was formula even mentioned! The nurses were kind and caring, and gently reminded us mommies to get enough sleep and nutrition. I could be by my daughter's side any time, except during the nursing shift changes (1 hour 2X/day) and doctor's rounds (approx 2 hours every morning). They always encouraged us to use that time to eat and/or catch up on our rest. My DH and our other kids were welcomed in any time, as well. The nurses patiently answered my kids' many curious questions, and encouraged them to bring photos and pictures to decorate DD's area.

I did butt heads with one nurse (over picking up my clingy and still-nursing DS, who didn't understand what was happening and needed his mommy), but I firmly told her to mind her own business and she left me alone. There was also a "gopher" girl with a major attitude who bugged the living hell out of me...I finally let her have it one day, and she avoided me after that.

All in all, I had a wonderful experience in the NICU. They treated me with respect, and they saved my daughter's life. I couldn't ask for much more than that.
post #13 of 284
Just wanted to stop in, say hello, and subscribe.

My daughter Anna was born via emergency c-section at 31 weeks weighing 2lbs 7oz. I had Preeclampsia and Class 2 HELLP Syndrome. She spent 4 weeks in the hospital and turned 11 months old yesterday! It's been a long and bumpy road. She's in physical and occupational therapy, but we're currently in a struggle with our insurance company, so therapy is on hold for a while. :

Hooray for my 100th post! :LOL
post #14 of 284


We went for ds's follow-up EEG yesterday, and he was given the all clear! No more Phenobarb, no OT (so far). Yipee! Though the neurologist did tell us that only about 50-60% of babies w/ ds's type of birth trauma fully recover... no one mentioned those stats initially... Just thought I'd share my good news.
post #15 of 284
Thread Starter 
Okay, I wrote my NICU birth story in parts because it was very long; it is here, in "Personal Growth." I posted it before the Birth Stories forum existed. :LOL

It seems like a lifetime ago, though. And I suppose, in a way, it was.
post #16 of 284
Originally Posted by eilonwy
Okay, I wrote my NICU birth story in parts because it was very long; it is here, in "Personal Growth." I posted it before the Birth Stories forum existed. :LOL

It seems like a lifetime ago, though. And I suppose, in a way, it was.

How did your second birth go?
post #17 of 284
Oh my goodness, Anna is reaching so many milestones in such a short time it's making my head spin!!

In the past week she has mastered the commando crawl, started a real crawl on her hands and knees, gotten back to a sitting position from being on her hands and knees, started to pull herself up on her own, and learned 3 new sounds (nana, gaga, and baba)! She's also accomplished something we've been trying to get her to do in OT for months - putting a ball into a small hole in her toy She'll be a year old (10 months adjusted) in 22 days (not that I'm counting or anything : ) and she actually fits into the dress that I bought her before she was born to wear on her birthday! I am *so* excited about this. Here's a picture of the set. The diaper, cover, and hat are all too big :LOL but the dress works! We're going to get her first professional portraits taken in it sometime in the next couple of weeks.

She's finally on the charts for her adjusted age in weight, and for her actual age in height! At 11 months old she weighs 15lbs 10oz and is 27 inches long.

We are just thrilled with everything that she has been doing lately. My little peanut is growing up. :
post #18 of 284
Can I just say Tara, that you and Tara are both gorgeous! Congrats on all her milestones, that must be a fantastic feeling!
post #19 of 284
Thread Starter 
Originally Posted by mamatojade
How did your second birth go?
Entirely differently! BooBah was born by emergency c-section at 39 weeks for a prolapsed cord. I had no labor at all, a completely pain free birth, and a very quick and easy recovery. BooBah was smaller than I expected her to be (6 lbs 13 rather than a solid 8) but I had also expected to carry her to 42 weeks (I just felt like I would ). She's got some kidney problems, but thus far it's nothing major. It's all good. She never went to the NICU, in fact she wasn't out of my sight at all after I got out of recovery. She'll celebrate her first birthday this month. She's petite (my kids are not huge) but not super tiny or anything, and she's growing well and fairly advanced in all of her milestones, so I don't worry much about her.
post #20 of 284
I'll subscribe to this thread. It will be helpful I think, especially now that we are considering #2. It has taken me a LONG time to come to terms with my son's birth.

I had a super easy pregnancy right up to the day I went into PTL. I did have quite stong BH contractions, and now I know that may have been a warning sign. My ob at the time gave me Magnesiocard which is a magnesium supplement that is kinda like an alka-selzer that dissolves in water and is lime flavoured. I was taking 2 a day to help with the BH.

We went to visit my mum and step-dad inthe USA for 2 weeks and my asthma acted up due to the climate (humid HOT) in New Hampshire. I was using my Ventolin nearly everyday. I also had a mild urea plasma infection that my OB was going to treat upon my return home. The day we left for home (Switzerland), I got a whack in the belly with a suitcase by accident, which made me . We also had the WORST terbulance I have ever experienced in my life on that flight home. The whole plane VIOLENTLY shaking and people getting sick and the baby was very active.

When I got home I made an appointment with my OB that day to pick up the antibiotics to treat the infection for both DH and I. We went grocery shopping first and when I was walking around I was having lower back cramps kinda like my period and I notice they were every 5 minutes. Since we had an appointment we went immediately to my ob who monitored me and immediately sent me to the Frauenklink (maternity hospital) much to my surprise. I was 27 weeks.

They put me immediately on gyneprial, which is a tocolyctic. I was on that for a while and on strict bedrest. They then changed me to a hormonal based tocolyctic which worked much better without the side effects. My cervix was nearly 100% effaced (only 0.5 cm thick) but I was not dialated. I was given 2 shots of cortisone to simulate surfactant production in my son (which hurt like NOTHING I've ever experienced).

I was there for just over 2 weeks and they were considering sending me home. I had a bad night. No sleep. it was hot as heck and no A/C. More contractions. Loose stool. A bit of a bloody show (I think). My husband arrived at about 10 am. The doctors were coming to tell me whether I could go home or not (I was orignially told they would keep me until I delivered, this was JULY I was due in OCTOBER).

A few minutes after my DH arrived my water broke. The assistant doctor checked me and I was 3 cm dialated. I was sent to L/D. I was with a midwife. I threw up. I had to use the BATHROOM. My midwife was afraid to let me go alone. I was having serious contractions. All I could think was, I cannot make it through another 8-12 hours of this. I ask my midwife about drugs. She knoew I wanted a med-free birth. She checked me. I was 8 cm. She asked me if I wanted to stand up and hang from the sling attached to the ceiling, I did. That baby came down fast. Seconds later, I was on the birthing stool and the NICU swat team arrived. 3-4 pushes and my son was out.

I had an episiotomy. : : : For a freaking preemie. I gave the doctor a piece of my mind and the head of the department too.

Anyway, Erik was born at 29 weeks 5 days with apgar scores of 9 and 10. No intubation. He was on a CPAP for 2 weeks. Caffiene for 4 weeks. An OG tube for a week, an NG tube for 5 weeks. He had desats constantly due mostly to reflux. He was only ever feed my milk. He had a blood transfusion due to anemia.

We had a rather uneventful NICU stay. 6 weeks in intensive care. 5 in the growing unit.

Our hospital was extremely progessive. Using hammocks for the babies in the growing unit. They encouraged us to care for him from the beginning. Kangaroo care was immediate. The nurses carried fussy babies in slings once they were out of incubators. I walked in more times to a nurse with two wheeled bassinets next to her and an infant in a sling than I can count. Or they would just hold them while filling out paper work, etc. They did regular baby massage. Instructed us on how to do it. All babies had physiotherapy to improve lung function. We have the same physiotherapist that Erik has had since he was born. They also had baby wearing classes.

We had a full-time lactation consultant just for the NICU. We were given a Medela Symphony pump to pump with and were show how to use breast massage to help. We were also given hints to increase supply. They have their own milk kitchen which puts pumped milk into bottles and freezes excess milk for you. They also sterlize all the pumping equipment for use in the nursery. We also had many many pumps on wheels to pump in the nursery complete with sterile tubing, horns, membranes, and bottles. We had lables with our childs name and a spot to fill in the date and time the milk was pumped. You put the bottles in the milk fridge which was emptied several times daily by the milk kitchen. You also had 2 sterile bottles and a refrigerator box to take home to fill with milk given to you every evening when you left the nursery. They had great nursing pillows.

The nursery was open 24 hours a day 7 days a week to parents.

If I sound like I am bragging about our hospital, it's b/c I am proud that they have it the way it SHOULD be for all parents.

Erik left the hospital after 11 weeks... 2 days after his due date. He had reflux. It has resolved itself. He has been diagnosed with a mild form of cerebral palsy. We have our same physiotherapist that we've always had, an OT, and a great chiropractor all paid for by national invalidity insurance.

He has new forms to help him walk. Which were molded for him. It's taking a bit to get used to for him, but he's doing great. He is cognitively normal, albeit on the slower end of normal. He's not walking yet, but he stands. He's vocabulary has exploded in the last few weeks and over all we're okay.

Whew, now that was a book. I love reading your stories about your children. It helps me so much to know I'm not alone.

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Mothering › Mothering Forums › Baby › Life With a Baby › NICU & Preemie Parenting › Support for parents of preemies & NICU babies, #2