Parents of premature babies check in here.

[StitchandPooh'sMom]

I must start by saying I am humbled by what everyone has been through. Even though our story was terrifying at the time, I am so impressed by all of your strength as I hear your stories!

DD4 was born six weeks early. It was a stressful pregnancy from the beginning. We had just moved to WV and had trouble finding an OB (due to malpractice issues in the state), so we were very thankful when our primary care doctor found an OB who would take a new patient (we soon discovered why he was available ). I was going to be 35 at delivery, so we had an amnio and several other "high-risk pregnancy" tests (not sure why, since the results wouldn't have changed anything, but that's a discussion for another time). Our test results suggested all kinds of horrible things, from anencephaly (which I knew was wrong since I saw DD's head on the ultrasound) to a ventral wall defect. I had to request my test results and saw a notation of placenta previa, which the OB had not even mentioned. He said it was "marginal" when I asked about it. The results also contained errors about my due date, which skewed the results to make things look bad. The doctor hadn't bothered to check that the inputs were right when he saw the results. I switched doctors.

Fast forward to Christmas Day 2002, when I started bleeding. DH took me to the hospital (fortunately DMIL and DFIL were visitng and stayed with DD8 (who was 3 at the time). The ER doc said I clearly had complete placenta previa - nothing marginal about it. He also said I lived too far from the hospital (10 minutes) to go home, since I might bleed to death on the way back (and DD was breech and was not coming out by herself). I spent two weeks in the hospital while my wonderful in-laws stayed with my first DD and brought her to see my every day. She has little memory of that time, but I still cry when I think of saying goodbye to her every day.

DD was born six weeks early with an emergency C-section. DH had just left for the night when I had a huge surge of blood and they had to deliver her. He barely made it back in time - they were about to cut me open when he got there. DD was a great size - 5 pounds 8 ounces, but her APGAR was 1 and I didn't get to see her. DH said it was the scariest thing he had every seen - she didn't even look like a baby - she was grey and very still. Her heart would not keep beating on its own and she spent three weeks in the wonderful NICU at WVU Children's Hospital. She was a week old when I got to hold her, and it was terrible to have to go home without her. Once again my wonderful in-laws came to the rescue, taking me to the hospital every day to see her and bring breast milk, since I couldn't drive after the C-section. I couldn't see her one day because I had a fever - I thought she would never come home. She spent two months on a heart monitor and they wouldn't release her until they were sure we could do CPR on her. Her heart monitor went off 13 times her first night home. We kept a log of each alarm, which we still have.

She is now a normal, healthy wonderful 4 year old who is 95% percentile in height and weight. She has caught up to her peers and can even take on her big sister when she gets teased too much. We are so blessed with two wonderful girls and a supportive family who helped us survive everything.

God bless all the families who go through this for their little miracles, and God bless those who don't ever have to go through that worry and fear. What miracles all children are, no matter how they come to us!

 

[clownchk]

well, her eis goes.

We got pregnant on our honeymoon (As was out plan LOL!) and carried on a normal prgnancy until a miscarriage at 11 week. We found out it was twins that had passed at 8 weeks 6 days and 10 weeks 2 days. We had to have a D&C to stop the bleeding, but I was given a clean bill of health and told to try again in 6 weeks.

I couldn't bear the thought of my "failure" and waited a few months before we tried again. To our surprise, it only took 3 months to get pregnant again! Yay!

I was cautiously optimistic and didn't tell a sole (Well, my DH knew LOL) until we were 20 weeks! We had an uneventful pregnancy, but I was very cautious and took nothing for granted.

I went away by myself for a convention just 4 hours form home for a 4 day weekend and had a blast! (I'm a professional Clown and this was a clown conference I even competed- and medaled in severeal events!!).

The next weekend I had my very first babyshower. I was 34 weeks. Monday I finished my parenting class, Tuesday we finished Lamaze, Wednesday I finished my Breast feeding class. Thursday I had my monthly OB visit, all was well, see you in 2 weeks. Firday I was to work a full day at work, then I was going to take the weekend off since I had another baby shower coming on Saturday.

Fridy Night my water broke. I was 34 weeks 4 days. Cntractions started 45 mintues later while on our way to the hospital and were 3 minutes apart.

We were redirected to a different hospital than the one we were pre registered at, but it was just 5 minutes further away.

Short story is that my baby girls was born 2:18 AM absolutely perfect just a touch small, 5 pounds 10 oz. THe problem is that we did not know she had been a twin, too, but her twin never beveloped. THe placenta, however, did, and did not want to detatch. After nearly 1/2 hour on bleeding on the delivery table and no sign of the afterbirth, my doc "went in" and manually extracted it. Not knowing any better, I had really no idea how serious this all was. the baby was ready to go home at 24 hours, I had to stay 2 extra days, and they actually wanted me to stay a 3rd. They wnted me to get 6 pints of blood since my blood pressure stabilized, but never fully recovered. After muchback and forth I foolishly made them agree to give me just 3 then send me home with the understanding that I was pretty much on bed rest until my 2 week post partum appointment. We had no "real" complications other than 36 hours of hosputalizations for jaundice and monthly Sinergist (sp) shots during the winter which they sent a nurse t our home for.

Whenshe turned a year, we decided to was time to try again since doc assured us that it was a fluke that my water broke so early. I figured it would take a bit of "trying" to get pregnant again,b ut it took us less than 2 months. We are good LOL!

everything was fine until 9 weeks when I had a miscarriage. I called my doc, knowing what he ws going to tell me and he had me go in for an ultra sound to make sure all feta lmatter had passed. He first did an internal and confirmed that my cervix was open and there was "Significant' Blood loss. Wheel imagine ALL of our surprise when he put the US machine on my belly and hte first thing we all saw was a little heartbeat!! Yup, I had TWINS yet again, but one had passed. ALthough Doc said there was little he could do to prevent the passing of the 2nd baby if it was meant to be, he wanted to make sure I had it in my head that we did "Everything" we could, so he put me on bed rest and pregetersone suppositories. The bleeding stopped in 3 days. and 10 days later I was told I could return to work restricted activities (I worked retail, so that was no biggie)

THe "rest" of my pregnancy was uneventful until one day I was 28 weeks 5 day. I was doing paperwork at work and decided I should get soemthign to eat and as soon as I stood up I heard/ felt a familiar "Pop/ gush" and called my doc, my DH, my supervisor, my mom, a replacement and Mall security since i was pretty sure I'd have to close the store if my DH got there before my replacement did.Everyone pretty much arrived at once, and I headed to the hospital, trying to stay calm and not even thinking about ANY "what ifs."

I ws put on montiors, but I kept telling them I was NOT in labor. 24 hours later they determined I was NOT In labor, but even witht eh leaking fluid, teh baby was not in any immediate danger. Their goal was to keep me out of labor until at least 34 weeks, 37 would be "ideal" EEEk 6+ weeks in the hospital with a 19 moth old baby at home?!?!

Day one was spent with me doing a lot of barganiing with God and DD and DH coming to visit as often as they could, but it was heartbreaking to me to have to tell DD that no, I can't go for a walk with her.

Day 2 in teh hospital and afte my AM us and breakfast I was given "special " clearance to now have unassisted bathroom visits! THey showe dme how to manuuver out of the compression stocking and keep my IV pole tangle free. DH and DD came to visit early since they would not be home most of the day (We belong to a water ski show team and we ahd 2 shows this AM - I was supposed to announce them since I was not skiing). They gave me hugs and kisses and we off. I got my 2nd shot of steroids for the baby, a fresh IV bag with antibiotcs in it and new instructions fr "resting " positions for me and was basically left alone.

I waited until after early lunch to try my first bathroom visit alone and got out of the stockings and into the bathroom no problems. I Went potty and when I wiped I felt "IT". THe Umbilical cord was in my hand!!

I hurried, jumped back into bed and called the nurses station an dwithin seconds there was a flurry of activity in my room, Docs and nurses introducing them selves, a resident telling me her name and that she needed to get the baby's head off the cord. Um, OK, at least I got her name before she shoved her hand up there LOL! Random Doc informing me that the baby was going to be born NOW while in my head I was screaming "NO! No one knows I'm having this baby today!"

I was now crying and resident was doing her bes tto keep me calm. I managed to yell out phone numbers for ranbom nurse to call but DH had already turned his phone off for the ski show and while she did get a hold of my mom, she lived at least 20 minutes form teh ski show site, which was around 1/2 hour form the hospital! I wsa going to have this baby all alone!

The anestegeologist (sp) was wonderful and talked me though just aobut everything, but it was all happening wy too fast. There was so many people in teh OR and not one of them "knew" me. Turn here, lay there, now just breathe! I felt a finger on my tummy and a baby crying in a far off room. I was confused, alone and scared out of my mind. Then the Anistegelogist asked me how much I wanted to remember. What kind of question is that! I informed her I did not want to be put under until after my baby was born! SHe told me, the baby was out and was crying. The cry is very weak, but based on the size, it was a good cry. - that far off cry I had heard was my baby right near me! I asked if it was a boy or girl and she smiled and said Tis A GIrls! COngratulations! I then told them her name and to "stitch me pretty" and tehn that was all I remember until a fw hours later. I woke up, DH was by my side with a picture of our daughter! SHe was tiny = 2 pounds 14 oz, and intubated, but perfect! I asked what her chances were and my nurse said "About 95%" and I burst into tears, but thenshe told me, NO 95% to LIVE - she is remarkably healthy! After an excrutiating LONG time (I had to move my toes before they'd let me out of recoery) I was finally wheeled upt o see my DD for the first time in the NICU DH had managed to arrive jsut as they were wheeling her out of the OR, snapped a few shots, ran home and printed them out and made it back to the hospital before I came to!!) and all I could see form my bed was a mass of wire and a turf tof black haor. I did get to touch her foot before I was wheeled away again.

I cried again later whenDH told me he was heade dto the NICU since they were taking her tube out (It was just 8 hours after she was born!) and I cried thinking they were going to let her dise and not let me hold her, but DH assure dme she was doing GREAT and it was a good thing! He returned and said all was well. SHe had her ups and downs,b ut we had MANY more ups thandowns. SHe was 3 days old before Iw as able to hold her for the very first time. I pumped like a champ the entire 6 weeks 1day she wa sint eh nuce and she came home fully breast fed without ANY supplementation weaighing a whopping 4 pounds 14 oz. she passed all her other tests with flying colors, including a "Suspect" shadow on her brain and was cleared of any ROP. She got PT for a year, but now you'd never guess she started her life so small! She will be attending Full day kindergarten this year. THis summer she took gymnastcs AND swim lessons!

THe girls are now 6 1/2 and just turnd 5. THey are both big sisters to the boy who was born VBAC at 39 weeks 2 days, weighing one ounce MORE then the 2 of them COMBINED!!. He is now 2.

THanks for letting me share their story!!!

 

[MSSANDRA]

Anyone else have that love /hate relationship with the apnea monitor ? Our followup clinic wanted to D/C ours at 6 mo when he came off O2 but i was scared to death to take it off as he had so many A's & B's for so long. Our wonderful ped. had lost her child to SIDS and told us she would sign for the monitor as long as we wanted it. DS was 11 mo old when he Learned to pull off the belt to make mommy run in the room.That was when we let it go!!

 

[fakereadhed]

My son turned 3 and I can't even go back thru it all to post the details. I went to a couple of NICU reunions thinking that would help me get over it. It almost seems like an entirely different baby than him, but it still haunts me. When does it get easier?

We were at the playground today and he was laying down in the sandbox playing with cars. A man came up and said, "What's your secret? How do you get him so relaxed like that?" I just smiled, but on the inside I was thinking "placental insufficiency-I don't recommend it." Maybe if he ever catches up to other kids I will get over it.

 

[StarLight StarBright]

Here is my preemie story. In April of 2003, I was 24 weeks pregnant with boy/girl twins. I went to the hospital for bleeding. Little did I know I was in labor. They sent me to a larger hospital 80 miles away by ambulance. They gave me every drug known to man to stop my labor. It couldn't be stopped. My babies were born, and immediately hooked up to vents.My son was 12 inches long, 1lb,8 oz.My daughter was 12 inches long, 1lb,6oz. My son lived one day. He had a stage IV brain bleed, a pulmonary bleed, and they couldn't regulate his blood pressure. They told us we needed to decide whether or not to keep him on life support. God was merciful to us, and made the decision for us. Before we could sign any papers, they told us to come quick to the nursery. Our sweet boy passed away in our arms. I could not believe I was no longer the mother of twins. I began to focus on my daughter who was not doing well either. She was transferred to yet another hospital, that could do surgery on such a little one, should the need arise. It seemed like every day she had a new problem, another scare. I would pray, harder than I had ever prayed in my entire life for that specific problem she was having that day. Her problems began resolving themselves. I have been a Christian all my life, and I had never seen God work , and never had felt his presence like I did when my daughter was in the hospital. The doctors went from saying, she is a very sick little girl, to instead of IF she goes home, to WHEN she goes home. Hope is the most wonderful thing in the world, and for the first time in months, I felt hope. I began to see the light at the end of the tunnel. She was taken of the vent, she was gaining weight! She was moved from the NICU to the Intermediate Care Nursery! She drank her first bottle like a champ. She did have to have 2 eye surgeries due to ROP( retinopathy of prematurity). The best day of my life was 87 days, after my tiny ones were born, walking out of the hospital with my little miracle in my arms. The doctors, and nurses hugged, and kissed us. My little girl is now 4 years old, and we have been extremely blessed by how well she is doing. She is just as normal as any other kid. Sometimes it is hard for me to believe what all she has been through, and then I just look at all of those pictures I have of her, hooked up to machines, and it just brings it all back, and I know how blessed I am to have her. She has turned into a Disney nut like me, our upcoming Nov. trip will be her 4th trip! And, we have also been blessed with another boy, who will turn 2 this year at Disney. No problems with him at all, he was born at 39 weeks! Sorry so long, this is just one of those topics that I can go on and on about!

 

[mericletwins]

Anyone else have that love /hate relationship with the apnea monitor ? Our followup clinic wanted to D/C ours at 6 mo when he came off O2 but i was scared to death to take it off as he had so many A's & B's for so long. Our wonderful ped. had lost her child to SIDS and told us she would sign for the monitor as long as we wanted it. DS was 11 mo old when he Learned to pull off the belt to make mommy run in the room.That was when we let it go!!

I just loved my apnea monitors and absolutely did not want to give them up. Our Dr. said that they have to wean the parents off more often than the kids. With the twins, when I fell asleep, I slept deeply because I knew if something were to happen the monitor would wake me up. With my singleton, I didn't sleep at all because I had to keep getting up to make sure he was breathing. I asked my Dr. for an apnea monitor for him, but got shot down.

 

[blanq]

DD that was intubated for 7 weeks has a very soft sort of raspy voice. The Dr's told us we could expect it. I just found it interesting that another preemie intubated for an extended period of time has that in common.

How interesting that our preemies have this in common! I have not met another preemie who does! When DS was a baby, his cry was so soft we could barely hear it. We never had to deal with the screaming that parents of non-preemies have to handle. That part was nice. But, today, DS has a hard time trying to project his voice and often he is asked to repeat himself which can be a frustration for him. When we go out to eat, it can even be hard for the server to hear him when he places his order, especially with the background noise that is common in restaurants.

 

[blanq]

My son turned 3 and I can't even go back thru it all to post the details. I went to a couple of NICU reunions thinking that would help me get over it. It almost seems like an entirely different baby than him, but it still haunts me. When does it get easier?

I can very much relate to how you feel. My DS is 14, and it is still hard for me to make a conscious decision to relive those memories of his NIC days. Typing my post on this thread was hard. So, maybe it doesn't really get easier. I think it's important though as our experience can help and provide support to newer preemie parent, and I know I don't want to forget because it's just part of who my son is and that needs to be celebrated. I know his experience, and how hard his first months of life were, makes me a more patient mom and reminds me how precious he really is.

 

[blanq]

Here is my preemie story. In April of 2003, I was 24 weeks pregnant with boy/girl twins. I went to the hospital for bleeding. Little did I know I was in labor. They sent me to a larger hospital 80 miles away by ambulance. They gave me every drug known to man to stop my labor. It couldn't be stopped. My babies were born, and immediately hooked up to vents.My son was 12 inches long, 1lb,8 oz.My daughter was 12 inches long, 1lb,6oz. My son lived one day. He had a stage IV brain bleed, a pulmonary bleed, and they couldn't regulate his blood pressure. They told us we needed to decide whether or not to keep him on life support. God was merciful to us, and made the decision for us. Before we could sign any papers, they told us to come quick to the nursery. Our sweet boy passed away in our arms. I could not believe I was no longer the mother of twins. I began to focus on my daughter who was not doing well either. She was transferred to yet another hospital, that could do surgery on such a little one, should the need arise. It seemed like every day she had a new problem, another scare. I would pray, harder than I had ever prayed in my entire life for that specific problem she was having that day. Her problems began resolving themselves. I have been a Christian all my life, and I had never seen God work , and never had felt his presence like I did when my daughter was in the hospital. The doctors went from saying, she is a very sick little girl, to instead of IF she goes home, to WHEN she goes home. Hope is the most wonderful thing in the world, and for the first time in months, I felt hope. I began to see the light at the end of the tunnel. She was taken of the vent, she was gaining weight! She was moved from the NICU to the Intermediate Care Nursery! She drank her first bottle like a champ. She did have to have 2 eye surgeries due to ROP( retinopathy of prematurity). The best day of my life was 87 days, after my tiny ones were born, walking out of the hospital with my little miracle in my arms. The doctors, and nurses hugged, and kissed us. My little girl is now 4 years old, and we have been extremely blessed by how well she is doing. She is just as normal as any other kid. Sometimes it is hard for me to believe what all she has been through, and then I just look at all of those pictures I have of her, hooked up to machines, and it just brings it all back, and I know how blessed I am to have her. She has turned into a Disney nut like me, our upcoming Nov. trip will be her 4th trip! And, we have also been blessed with another boy, who will turn 2 this year at Disney. No problems with him at all, he was born at 39 weeks! Sorry so long, this is just one of those topics that I can go on and on about!

Your experience brought tears to my eyes. 24 weeks is so early, and I am so sorry your sweet son is not with you. The absolute hardest time I had while practically living in the NIC, was watching from afar when a baby did not make it. I am so happy you have been blessed with a wonderful daughter, and that she is doing so well.

 

[Schmeck]

First DD was only 3 1/2 weeks early, but I remember the delivery doctor saying "it's a girl, and she has hiccups", which made me laugh, but then she stopped breathing...

They rushed her to the nursery, hubby looked at me and I told him I was fine, go with our daughter!

She stopped breathing at least 3 times that I know of, and had preemie jaundice, but she weighed 6 lbs 4 oz. She spent 10 days in the special care nusery, and I saw babies much worse off than she was.

Now she's 16 yrs old, 5'7" tall (which is 4" taller than me, and only 3" shorter than hubby) was the highest scoring student in the tri-state math league, a high honor student, and her synchronized skating team qualified and competed at synchro nationals last season...

My water broke at 25 weeks with 2nd DD. DD#2 was measured at 12 oz. at the time! I was rushed by ambulance into the city, where I stayed for 2 weeks. My mom and his mom took turns caring for DD#1 so hubby could work. DD#1 was only 2 yrs old at the time.

After nothing happened in the fancy, expesive hospital, I was shipped off to a local one. Spent another 2 1/2 weeks there, still nothing happened. They sent me home, on bedrest. My mom came to stay with us so hubby could still work.

Many, many weeks later (36th week?) my doctor says I can stop bedrest. My due date comes, and goes....

The little bugger was born 4 days past her due date, my membranes had resealed and refilled, and the doctor who had sent me to the fancy hospital months before was the one who delivered her, and laughed that he had to rupture my membranes!

DD#2 does have one birth defect, a palsy in one eye, fixed 80% by surgery. She's almost my height, a high honor student, and a bit of a brat. I tell her she can't give me any more trouble, she had the nerve to be 4 days past her due date to begin with!

 

[MSSANDRA]

My son turned 3 and I can't even go back thru it all to post the details. I went to a couple of NICU reunions thinking that would help me get over it. It almost seems like an entirely different baby than him, but it still haunts me. When does it get easier?

We were at the playground today and he was laying down in the sandbox playing with cars. A man came up and said, "What's your secret? How do you get him so relaxed like that?" I just smiled, but on the inside I was thinking "placental insufficiency-I don't recommend it." Maybe if he ever catches up to other kids I will get over it.

Prayers as you continue to cope with your child's birth. Parents of full term babies can not understand that there is a greiving process involved in a premature birth. I greived for the wonderful new born homecomming and not ever nursing my infant (though MANY premature infants do nurse well, mine was too ill for too long). I pumnped for months! Please reach out to others that have been there and sometimes that does help. Feel free to PM me. Remember that however you deal is ok. A freind of mine whos DD was a 25 weeker still needs help to get through her DD's b-day ever year and she is 15!!! I for some reason cope pretty well, though I have shead a few tears over this thread and remembering. We do not love our kids more but we sure appreciate them more!!

 

[MSSANDRA]

How interesting that our preemies have this in common! I have not met another preemie who does! When DS was a baby, his cry was so soft we could barely hear it. We never had to deal with the screaming that parents of non-preemies have to handle. That part was nice. But, today, DS has a hard time trying to project his voice and often he is asked to repeat himself which can be a frustration for him. When we go out to eat, it can even be hard for the server to hear him when he places his order, especially with the background noise that is common in restaurants.

DS experienced some trama to his trachia from intubation. He developed a spastic cough several years ago. I took many doctors to finally diagose trachiomalashia, from damage from the vent. It is controled by managing his allergies well but just thought I would put that out there in case you deal with this and the doctors have a hard time figuring this out. As a toddler he was always a raspy/coughy child. It took a pediatric pullminologist that delt soley with post premature infants to figure him out!!!

 

[MightyMom]

MSSANDRA

My DS8 is a "Jordan" too.
I had a fairly easy pregnancy with Jordan. But I went into labor... and the terbutaline didn't work. My water broke.

He was born at 30 weeks. He had some typical preemie problems in the NICU... but otherwise sailed right through.

When he turned 3 months he woke up and his eyes were crossed. I took him to the ped and she said he most likely had cerebral palsy.(Sudden onset of strabismus is an early indicator of cp) After 3 different neurologists (I was in denial) and 2 brain MRI's..... our worst fears were confirmed.

Jordan has cerebral palsy.

Intellectually I knew it wasn't my fault. I was only 23... healthy... and I was the picture perfect patient. But I was consumed by guilt, convinced my body was defective. No one could tell me why I went into labor early.

Fast forward 4 years.

I got preggo with DS3... Dillon.

I went into labor at 20 weeks. My doctor did everything short of hanging me by my toes. I was in the hospital on Mag and STILL contracting. My little stinker came bouncing into this world 6 weeks early.

He has a LOT of sensory issues. There is no one on earth who can convince me they are NOT related to his prematurity. His little body was NOT prepared to enter the world. There is a reason we're supposed to stay pregnant for 40 weeks.

I am 110% certain my body can not carry to term. The doctors just can't tell me why I delivered early. So my baby factory is shut down for good.

Having a physically disabled child... is difficult. Throw a sensory defensive child into the mix and life can be overwhelming.

But life is SO rewarding. I take no breath for granted. Everyday I sit and look at two miracles.

 

[Mono~rail]

He has a LOT of sensory issues. There is no one on earth who can convince me they are NOT related to his prematurity. His little body was NOT prepared to enter the world. There is a reason we're supposed to stay pregnant for 40 weeks.

My DD's sensory issues mainly involve her mouth and throat - from being intubated and feeding tubes. She's defensive of her entire face but very defensive with her mouth. About 3 weeks ago she finally started sucking a pacifier so that is a huge step in the right direction for her! We are realistic though, and we understand that it will be years before we can even think about her being able to nutritionally sustain herself orally. We've also been told that she may need her feeding tube her whole life. She may never be able to completely overcome her sensory issues. I don't really like to think about that though. It is difficult to balance reality with optimism.

My very dear friend has a dd who was born on time, but she has CP. We had just moved down here, and the nursing director at the pediatric group that I chose put us in contact with each other. It was such a relief when I met her because I had not ever met another parent of a tube fed child. Her dd is 4, and she had not met another parent of a tube fed child either. It just helps so much to be able to talk to other parents with similar experiences.

 

[jakoky]

Reading all these stories of our little miracles makes me aware again of how blessed we all are...i have been pregnant 5 times and have 3 beautiful children

My first pregnancy I lost our little boy kody at 28 weeks from something called amniotic band syndrome...I still miss him very much but am grateful for the time i got to carry him..I then had a healthy daughter and then a son, both full term and with just some spotting and minimal problems...i then m/c at 10 weeks

This brings me to our little miracle...at 10 weeks i had a massive bleed, but found out the next day baby was well, possible twin pregnancy(lost one) or placental tear(to this day we dont know)...19 weeks, baby has a bright bowel and enlarged-both indications of possible chromosone problem...I refused an amnio, did scans every 4 weeks and got to 33 weeks...this scan showed the bowel so large it could burst..emergency induction-kyana was born pink, screaming and huge but very sick...She spent 47 days in the hospital and had 3 major bowel surgeries-her first one they removed one third of her stomach and connected her bowel to her stomach and they removed 4 atresias(improperly formed areas of bowel), 2 weeks later they had to go in again and removed an area filled with ecoli....2 weeks later kyana still couldnt "poop" and they went in again and found the last problem-she had a web(layer of skin blocking the bowel)...my poor baby had surgery at 1 day, 2 weeks and 4 weeks...all this while she was fighting the preemie issues like apnea, rds, jaundice, bradycardia...she also had the ecoli infection she had to battle, a central line put in(ran out of veins) and 3 transfusions...I still remember her first "poop", we waited almost 40 days for it....She had to have one last surgery before she came home to remove her central line-simple little surgery-i go to check on her to find out she is in the picu-she had some kind of spasm when they vented her...she was also having apnea again, one night in there and we get to bring her home the next morning...She is a little fighter and came home well on her due date..She is now almost 12(her birthday is 11 days before our disneyland trip in sept)...Kyana is still small for her age, she was huge at birth-5 lb 11 oz and 18 1/2 inches-at birth, she was in the 95 % for everything, after she scraped the bottom 10...She gets a lot of stomach aches and had a small calibre airway(due to all her preemie issues) which she outgrew...Her many, many scars remind us daily of how lucky we are...we were also so lucky that kyana did not have downs syndrome or cystic fibrosis, these were the docs biggest fears while i was pregnant...

To all the docs and scn nurses-WOW, you got us through it all...having my then 2 and 4 year old 4 hours away from me(including a 1.5 hour ferry ride) for 47 days was so hard, then having to watch my little one struggle to get well, and having to "ask" to hold her, was harder than most can imagine, but having our "miracles", we can all relate so much to each other....Just remembering the hospital days can bring tears to my eyes and it has been almost 12 years-i think i can even remember the smells..

sharon
me, dh, dd-16-, ds-almost 14-, dd-11 1/2-
WDW-Dec 04-first disney experience for my DH, DD, DS, DD and first time at WDW for us all
DL-MAY 06-first time at DL for DH and kids , and my 9th(but the first 8 were all by the time i was about 13) so it was all new to me
COUNTDOWN IS ON....WE ARE GOING BACK TO DL SEPT 15-25!!!!!

 

[paysensmom]

Hi everyone. Great stories, I am sorry to hear about some of the things you have gone through.
My daughter Gracen was born at 31 weeks. Its a long story so bear with me! I had a speck of blood when I wiped. (By speck I mean a tiny speck that you find in a chicken egg) I was NOtT worried, but you know the doctor always says get checked just in case. Better safe than sorry. OR so I thought... My doc office was closed, it was about 5PM. I took my husband to his softball game and I took my 28 month old son with me to the hospital to get checked out. I peed in a cup and they hooked me up to see if I was having any contractions; all the normal stuff. I was NOTworried at all. I turned on cartoons for my son and I layed in bed crocheting a blanket for my daughter. (I brought it because I thought I would be waiting for a long time, you know emergency rooms!) So a nurse comes back in and says everything looks fine, she just wants to check me to be sure I am not dialated or anything. She said to be safe, they wanted to keep me for observation over night. So I call hubby at the softball game to tell him I wasnt gonna be picking him up later. I told him they wanted to keep me overnight and he said he will be up soon. So, she starts the normal way, and then it started to hurt really bad. I asked her what she was doing and why did it hurt? She said she needed to check the baby. OK WHAT?? I told her to stop touching me. At this point, she climbs up on the end of the bed with her knees and has her face pressed against my thigh. She was pushing so hard, it felt like she had her entire arm up there. I was in tears it hurt so bad. She finally got up and told me "oh wow, your baby is going to have a lot of hair I felt it"
Not two minutes later I start having contractions. I was like, what did you do to me? Why am I having contractions after you checked me like that? I have never been checked that way before. I told this crazy nurse that I had to pee and she told me I could not get out of the bed and I should just pee because that is what the pad on the bed is for. I said excuse me, you want me to pee on myself, are you kidding me? you better get me a bed pan or I am getting out of this bed. Pee on myself, good god lady. So, they call the on call doc and he told them to give me the pills that disolve under your tongue to stop labor. I asked them to give me the shot that stops labor. (Cant recall the name now) They said that is saved for a last resort kind of thing. So after two pills disolving and contractions not slowing down. My husband arrives and tells me he called his mom and she was going to take our son for the night so he could stay at the hospital with me. He was getting ready to leave with our son and a different nurse comes in to check me. I told her no way it hurt last time. She was like, no it shouldnt hurt. She checked me and it was the same as I have been checked before. She was like, "sir, I dont think you should leave, your wife is dialated to 5, she is having this baby now!!" I just broke down. It was too early, why was I in labor?
So, they call the on call doc and he comes in and they wheel me down to get an ultrasound. By this time I was dialated all the way with no desire or need to push. The doc kept telling me are you sure you dont feel like pushing? I was positive!!! He says, then the baby must be breech. Lets do an ultrasound. So he does the ultra sound and says, ok, she is not breech. I think OH thank God right! WRONG....
He says, but she is transverse. What? What is transverse? That meant she was horizontal in my belly. She was way up high too. So to me that means there is NO way, she is the one who wanted out OR put me into labor.
I am convinced the nurse put me into labor the way she checked me.
The doctor tells me that I need to have an emergency C section. Of course I just started bawling right there. In the mean time, my son was being watched by the nurses in the nurses station. There were about eight people in my room now running around like mad men. My husband was the one emptying the bedpan since I was peeing like every two minutes.
The anastesiologist (sorry, cant spell that one!) came in and told me what he was going to do. I just couldnt stop crying. He was like its going to be ok. I sign the papers and they wheel me into the OR. Of course I have a major contraction while he is trying to do the spinal block and I cringe, I just heard the anasesiologist gasp "oh dont move now" he was in the middle of putting the needle in!! SCARY
I was so worried it wouldnt work and I would feel everything. He assured me I would not feel it. So, finally he put ice up on my side, I jumped a little, he said you feel that? I said yes, he says well, for the past minute I have been rubbing it over your belly. I was convinced I wouldnt feel anything after that!! My husband was still being prepped for the room and they started
He almost passed out when he walked in because he said he saw more of me than he ever wanted too!! When they told me she was out I didnt hear anything. Nobody was talking and no cry. I was scared and asking what was going on. She wasnt breathing so they had to get her breathing.
After they got her breathing, they brought her to me and showed her to me for about a second and then wisped her away. I got put into what seemed like a linen closet? All I could see was shelves full of sheets and towels. Every now and then a nurse would come in and ask if I could feel my toes yet. I could hear my son crying from somewhere down the hall, he just kept saying I want my mommy. FINALLY, my husbands mom brought my son into me and he just wanted to lay with me. I just put a pillow beside me, guarding my belly and he layed with me and went to sleep within one minute. He was just worried about me!!
My daughter never really had any serious problems. The occasional brady kardia and apnea. She had a feeding tube for 30 days. She had the PIC line that went from her arm down into her heart. It was so sad seeing my little girl with all these wires, and cables coming from her. We were only allowed to hold her for a short amount of time and only just before she ate so she didnt end up spitting up. Of course I pumped and she got breast milk mixed with neosure for the extra calories. It was heart breaking, feeding her through the tube by slowly pushing milk through a syringe.
She was in the NICU for 36 days. When we took her home, she wasnt allowed to leave the house and nobody could come over because her white blood cell count was really low. She turned 3 July 6th and you would never know she was a preemie if I didnt tell you!! She is advanced for her age with no problems at all! Thank God. I am happy to say, I had a disposable camera in my purse, so I have a few pictures from that day. I am a scrapbook addict, so I always have a camera with me of some sort.
Sorry it was so long.
Heather

 

[maedelken]

I have three wonderful children and one on the way. My first daughter was born 7 weeks early. I had a little spotting in the early weeks of pregnancy but nothing too scary. My OB who is no longer my OB discovered I had a bicortaid uterus which gives me the risk for preterm labor. At the time I asked him what the risks are he told me there was no need to worry and I could continue on as normal. At 27 weeks I even got approval to travel to Greece which was probally a mistake. When I was over seas I had some signs of preterm labor luckily it stopped and I was able to travel home. It was very scary. I told my doctor and he said I was probally dehydrated he didn't even check to see if I was dilated. So I went about my normal routine and at 33 weeks I was sitting on the couch and I stood up to go to the bathroom and I heard a pop gush. It is all a blur after that I could not believe this was happening I think I was in shock. My DH rushed home from work and met me at the hospital. They MAGed me for 48 hours so they could give me two doses of steroids and antibiotics. Those 48 hours were like torture and so blurring I think I was a whining mess because of the MAG. After 48 hours they gave me pitocin which was no fun either and my baby arrived a couple hours later. She was 4#4.8 ounces and I gave her kiss and they took her away to the NICU. I was very lucky she was breathing and didn't need a vent. I feel the steroids really helped her. The whole Nicu experience is so uncertain you never know if will stay good because it can go bad so quickly and there is never a for sure answer from the nurses. I went home without her but was very lucky she was our first so I was able to be there all of the time. She was in the NICU 10 days and then she came home.

With my 2nd DD I went into labor at 26 weeks but I had a new OB who took the right steps. They put me on MAG and let me tell you it was very high dose and it was very scary because they didn't think the contraction were going to stop. They head the NICU doctors come in and talk to us about the survival rates of 26 weekers. Thank heaven they got my labor to stop I was so lucky. They sent me home on bed rest on terbutiline pills two days later I was back in Hospital to go thru the same routine again. Apparently the pills did not work because I needed a constant level in my system for it to work so when the pills would wear off right before my next dose the labor came back. So they gave me a terb pump and 10 weeks of bed rest later my DD was born at 36 weeks she had jaundice but still came home weghing 6#2ounces.

With the third I was magged again at 26 weeks and then everything settled down. I took it easy and that little bugger stayed in there until 39 weeks. They were just about to induce me because my blood pressure was getting high and I was getting huge when my water broke. DS was 7#11ounces and came home with us. He was a big baby. It was weird having a big baby when our first DD had no butt she was so small I was afraid to brake her.

All my kids are doing fine now the girls just on the small side but thats okay they are girls. I fell very lucky that everything turned out okay. I am 14 weeks prego now and I kinda feel like a ticking time bomb just waiting to see what will happen. Maybe everything will be fine but you never know. I really hope that it will be okay. To all the other preemie Moms I really look up to all of you. All of you show such great courage.

 

[Tigger&Aidan]

My DS was born at 30 weeks. Before him, I had heard of prematurity, but never really understood the full impact of what it means. I think that until you have been there, you can't really "get it."

I had sudden, severe Pre-E and was hospitialized a few days before he was born. I had been monitored by my OB for my creeping up BP, but everything seemed ok. Over a weekend, I went from being ok to being really, really sick and I didn't even realize it! I thought it was normal PG problems! I felt crappy, but just attributed it to the PG. I was given steroid shots and monitored for two days until my kidneys started to shut down. Aidan was born via c-section (he was also breech). He did well for the first week. Off the vent within a few days and onto to a nasal canula, tube feeding, etc.
At a week old, he developed NEC and ended up having surgery at 10 days old. They removed 1/2 his large intestines and left him with an illeostomy. Aidan was also born with a Cleft Lip and that made it difficult to BF, so I pumped. We spent 71 long days in the NICU. We spent another 3 weeks in the hosptial for surgery to recconet his intestines and for his lip.

Today, he is a happy, healthy toddler! He's so cute I could just squeeze him! We are truly blessed to have him here - that's something I think about each day. We have no delays and he is doing well, just normal colds and stuff. Since he came home, I volunteered for the local March of Dimes, which really helped me to meet other preemie moms and share our experiences. It's been healing for me, to share what has happened and to know that others understand. I don't think i'll ever "get over it", but it does seem to get better....

here's a link to a slideshow I did about Aidan, if anyone wants to watch....
www.walkamerica.org/team_aidan_pgh I've watched it probably 100 times, and it still makes me cry....

Special thank you to any NICU nurses out there - you have no idea how much preemie parents appreciate the little things you do to make us feel like "real" parents!

 

[DbleTheFun]

Your video brought back SO many memories.... thank you for sharing it!! I dont even know you, but I feel as though I do after watching.... THANK YOU!!!!

Do you mind me asking, what the names of the songs and the artists are that you used?

 

[kileybeth]

It is kinda hard to type through tears ya know?

It is an emotion no one can understand unless they have walked that road.

I would catagorize our preemie birth as a mild ride compared to some of the stories here but for us, it was survival one day at a time. I have often heard it said that a day in the NICU is like a week anyplace else, oh so true!

Our 31 weeker was born on 5-5-05 by emergency c-section. Trauma does not begin to describe those hours and the following weeks. She is now a tiny but fiesty 2 year old.

She still has a few lingering health problems due to her lung deficency but otherwise is doing great.

I did smile at the vocabulary used in this thread. I have always felt like I got an education those 5 weeks in the hospital that is suddenly not good for much once you are released out into the real world of healthy newborns!

I had 5 healthy newborns prior to our last little surprise. They were all born at 36-37 weeks gestation. Still full term deliveries. Little did I know what a few weeks difference could make.

The feelings of failure to carry my baby to term still haunts me today.
So much more I could type but you all have been so eloquent in sharing I just wanted to say I so appreciate you sharing.