Parents of premature babies check in here.

[all4fun]

Thanks to everyone for sharing your stories! Big hugs to all of you who have been down this road with your precious miracles.

Here's our story: DS was born at 28w/4d via c/s due to pre-e and HELLPS. Up until 27wks I had a pretty uneventful pregnancy with him really. At my 27wk u/s appt they measured elevated bp levels in the umbilical cord and low fluid. Long story short, I was admitted on hospital bedrest.

Someone else mentioned joking around with the hospital staff. I was the same way when I was being checked in. I guess it's my way of dealing with a stressful sitation too. It was either laugh, or cry, so I chose to laugh, kwim? Unfortunately, after only 4 days my b/p got out of hand and I started to show signs of going into HELLP syndrome so they told us ds had to be delivered. They brought me to the OR and were prepping me with an epidural but it wasn't working. All the sudden there was a flurry of activity I heard someone say that ds heartrate was dropping too low, I heard "do a general" and they put a mask on my face at which point I was knocked out. It wasn't until after I woke up that I found out about the HELLPS diagnosis. When I ponder what led up to ds's birth I feel really grateful the doctor decided to admit me 4 days earlier instead of putting me on home bedrest. The HELLPS might have gotten a lot worse if they hadn't been monitoring me.

Dh was there in the recovery room with me. I was shocked to find out ds was only 1lb 5oz, 13". They wheeled me thru the NICU on the way to post-pardum and I got to touch his hand. I didn't get to see him again except for in a very blury polaroid picture for over another 24hrs because they had me on that awful Mag-Sulfate. I was sent home about 5 days post pardum and while I was glad to not be in the hospital any more I was heartbroken to be leaving the hospital without him.

Except for his PDA ligation surgery at 2wks, and a few blood transfusions which is pretty common, his NICU stay was fairly uneventful. The surgery was actually a major turning point for him. Up until 24hrs after surgery he had been vented for a week so it was great to see him off the vent and back on CPAP and eventually of course he was weaned to just the nasal canula. He had a's and b's up until about 6 days prior to coming home. He was two days shy of his due date and exactly 5lbs when we brought him home. At the time it seemed very rough but looking back and knowning now what others have gone through I realize that he had a pretty smooth NICU stay considering everything.

After he came home we had more drs visits to monitor his status than the average newborn. He had some lingering issues like elevated bilirubin (on meds for that and it cleared up w/in a week of coming home). He also was being watched for an immunoligical disorder called cyclical Neutropenia which thank goodness it turned out he didn't have. We've only had one sick visit to the dr - at 10mos he had bronchiolitis which was thankfully mild enough it was treated w/a 10day course of antibiotics. So even though the first few years were kind of stressful on the medical front, overall he's been fairly healthy. I'd say the roughest part was dealing with his eating issues. He was dx'd w/ reflux at about 4mos and wouldn't eat more than 1-2 oz at a time. We were feeding him about 10-12x day and he ate a lot less than the average kid so his feeds were fortified breast milk (I pumped for several months so we could do this). DS also developed oral aversion issues which at age four we are now just dealing with a very picky eater but its much improved over where we started (at 13mos, gagging and throwing up when food came anywhere near the mouth). Somehow despite all the feeding issues ds has managed to maintain his growth curve. Oh and the first food he ate w/out gagging? Cheetos, which is still on the list of one of his all time favorite foods. LOL

I remember the neonatolgoist telling us because of his IUGR status he would never be big and I guess that has remained true to a degree. He's only 30th percentile in weight right now however he's tall for his age - 90th percent for height. I attribute his good growth to the Cheetos. Haha Developmentally he's had some delays, now the only thing he has to catch up on is his speech. He is also a late potty trainer, I think mainly due to chronic constipation issues. This next trip will be our first diaper free trip with him. Woo Hoo!

Well if you hung in here this long thanks for reading. It's been a little bit of a rough road and there's definitely been a lot of emotion. I'm just happy to be able to report that he's doing so well. He's a real blessing to us.

 

[Mean Queen]

Thanks to everyone for sharing your stories! Big hugs to all of you who have been down this road with your precious miracles.

Here's our story: DS was born at 28w/4d via c/s due to pre-e and HELLPS.

It's interesting to see how many of us had HELLPS. I had never heard of it before. I was prepared for Pre-eclampsia, but HELLPS was so much scarier (and painful for me.)

Maybe your DS's constipation issue is from all those Cheeto's since cheese is binding. (As if there's actually any cheese in Cheeto's.) But whatever helps them grow sounds like a major food group to me.

 

[karenTX]

Hmmm...Maybe there is something with being premature and loving Cheetos! My DD LOVES Cheetos too!!! In fact, that was one of her first words we were able to understand..."Eetos"!!

 

[tmonferdini]

My preemies were born on 11/9/98, DD weighing in at 846g (1 lb 14 oz) and DS at 923g (2 lbs 1 oz). I had problems early on with only 25% of my cervix remaining from a botched cone biopsy after bad paps. I had a cerclage (2 stitches, actually) and they became infected and had attached themselves into my bladder wall, thus causing constant uti's & the need for antibiotics, etc. I was often in labor & delivery for pre-term labor and they finally couldn't get it stopped, so they flew me to University of Chicago hospitals (about an hour away from home) to try and maintain the remainder of pregnancy. Three days later, my water broke & that was it. I delivered my twins at 26 weeks & they went through the myriad of tests & tribulations. Septic, possible NEC, jaundice, and basically everything that goes along with a preemie. My son's skin would tear from the tape & they had to put i.v.'s in his head because he had no more good veins.

They were transported back to our local hospital to grow on 12/31/98 (before a huge snowstorm was to hit) and were there for a couple more weeks. Sometime, a week or so later, he became septic again & they helicoptered him back. They ran a gamut of tests & found a heart irregularity, but, thank goodness it's only classified now as mild and he has no restrictions, other than antibiotics before any invasive procedure. My DD came home on 1/15/99 and my son on 1/20/99 and they have been happy and healthy since. They were both released when they weighed 4 lbs 4 oz.

They are now completely caught up and my DD is the tallest girl in her class. They like to take their "baby doll diapers" and their little hats and blood pressure cuffs (size 2) for show & tell with pictures of themselves in the isolettes & tell everybody exactly how little they once were. The other kids really get a kick out of it.

Luckily, we can all look back now and realize just how lucky we were/are that they are as perfect as they are.

 

[letthewookiewin]

The first part of my pregnancy with my oldest DS was so perfect that it had my co-workers hating me. I didn't gain any weight, in fact I lost 2 to 3 pounds a month, which my doctor monitored. I had no morning sickness at all, and only had cravings for anything pina colada.
At the end of my 30th week, I drove from North Texas to Arkansas to see my sister march with her college band. After sitting through the 5 hour drive and the football game, I became sick, but shrugged it off to sitting as long as I did.
The following Monday I was in so much pain that I could not stand up right. Luckily, I had my monthly appointment that day, so my doctor came back early from lunch to see me. My blood pressure was 230-somthing over 148. He wanted me to walk over and admit myself immidiatly. Before doing that however, we stopped off at me MIL's office b/c she worked in the hospital. She went with us to admit me and took off from work to stay with my husband and myself during the days of my stay. Also, I had blood work, and blood pressure checks every hour of the day and night.
Like karentx, they started the first of many rounds of mag sulfate. woo hoo, lucky me (for those who've had mag sulfate, you can read the sarcasm in that. ) I was told to stay laying on my left side, and put on a clear liquids diet. Since they thought I would be there a while, my MIL brought me a bag full of movies to watch. After a high blood pressure check while watching Jurassic Park 2, all of my movie were taken away except for the Disney movies.
When we would ask when I could go home, or when my baby would be born, I got the same response. The only date we can tell you for sure is your due date. My due date was December 24, and it was the middle of November. They were trying to put off the birth of my son to December 1st at the very earliest.
After being in the hospital several days, they gave me a sedative. If after 12 hours sleep and no mag sulfate my bp was good, I would be released to my MIL’s house (b/c she’s a nurse and lived close to the hospital). When they took my bp after the time, it was still high. They gave me the option of staying at the hospital I was at, and then have my son moved to Baylor in Dallas after he was born, or I could be moved that day. Since I wanted to be at the same hospital with my son, I was transported by ambulance.
After several more days, the nurses thought I was getting good enough to be able to sit up long enough to take a real shower. WOO HOO!! Then right before the shower I had my hopes dashed b/c the lvl of protein in my urine my 14. They started another round of mag sulfate & started inducing labor. Early the next morning, just as I fell asleep, the doctors came in and started prepping to do a c-section. Before my DH could get to the OR, they decided to do an emergency c-section due to how my DS’s heart rate was dropping lower with each small contraction.
He was born November 13, 1997 (at 32 weeks), and upon leaving the OR the NICU nurse handed him to my DH to carry to the NICU. He weighed in at 4 lbs. The only problem he had was a little jaundice. We brought him home the Saturday after Thanksgiving. We say that he came early b/c he didn’t want his birthday anywhere near Christmas.
He is now 9 yrs old. I am 5’5”, and he comes up to my chin, and can where the same size shoes that I wear. If you look at the picture in my signature, he is the DS to the right on Mickey Mouse and was 8 when it was taken.
I will be forever grateful for the angels that work in the NICU at Baylor Dallas.
I love reading everyone stories about our special little ones. I know that while I was going through it, the nurses that gave me the greatest hope, were those who had gone through it before me.

 

[MSSANDRA]

The cheeto thing has to be a premature thing . DS was about 18 months and had NO junk food. He only had a few teeth and about two spoons of food would fill him up so we were VERY particular about what he ate. He was also VERY picky and only would eat a few select things. Well we were at this small family owned children's clothes store and the owners son was about DS's age. He was sitting there eating cheetos and the next thing I know he is feeding them to DS. I had never seen him eat anything like he was chewing on that cheeto. It was a while before he got another one but even at 15 it is his favorite snack food.. TOO FUNNY.

 

[Maliki2]

Well I didn't have a premature baby....but I do know how you all feel. Both my brothers kids were premature. But with our son it was a whole different ballgame. Sam was born with a birth defect that is a 1 in 5000 chance. He had to have a emergency operation 2 days after being born. Sam had a ostimy bag for the first 6 months of his life. He had four surgeries in the those first 6 months. We were at the NICU for a week or more during every surgery except the last. And that has included weekly visits to be looked at by our surgeon. Which was cut back to once a month, which we are on now.

From the start we had to dialate him a few times a day, then down to once a day, to once every three days down to once a week and finally now a year later once a month. We are now seeing the surgeon one more time and if everything is good which it seems like we may be down to once a year or once every six months. Believe me there are always people alot worse out there than yourself, even though you think your world is crashing, the first two weeks with Sam at home were the hardest two weeks of our lives.

I remember being at the NICU and there were many babies worse off than ours or at least Id like to think so, even though Sams problem was serious.

I cant wait for Disney and Sam!!

 

[brettgirl]

I have been enjoying not feeling alone.........

My DS was born Dec 12, 2000, 8 weeks premature. He was not growing though and I had very low platelets. He was born at 3.11 lbs, 17 inches. Although he was not inubated he did have oxygen by his nose, could not suck, and would stop breathing when he did learn to eat (isn't just like a man, not to be able to do two things at once! hee, hee), jaundice and he was hooked up to everything. The worst thing about it was I got to see him for a split second and then he was wisked away and I did not get to see him until the next day. When we did see him, I was not to touch him! A week later I ended up in the hospital from internal bleeding from having him (I was in another hospital!!!!). Nico spent 30 days in NICU and came home with an apnea machine for 4 months. He ate all day long.........It seemed like forever to get the child to drink 2 ounces, and then you would start all over again! He gained weight very quickly but did not get as pudgy as his older sister did. I was grateful when the day came that he slept all nite, which he did unlike his sister who did not sleep all nite until she was 4!

Our problems (well, I don't see it that way now) started. He had a double hernia operation (very common in premies), they had to CAT scan his head as it was growing way too fast and his left ear tampanogram was flat. His head was also flat because no matter how I propped him he managed to get onto his back, it is finally getting a little more rounded.

Hernia is fine, head was fine and he has no problems hearing now.

He was developmentally delayed but the wonderful NJ hospital hooked us up with therapists at the home, he also had many sensory integration issues which later became diagnosed as PDD-NOS (autistic spectrum). We have had the help of NJ and PA to get him free help and pay for special nursery schools that specialize in developmental delays and we work with him at home (I am a early childhood teacher).

He successfully completed kindergarten in a regular class this year (he does have a helper to keep him on task and help with his anxiety) and will be in first grade next week, regular class with his helper.

You would never guess he has autism, he is a beautiful (a little small at 33 lbs, size 5t and 6.5 yrs old) smart and becoming quite funny little guy. He is the up and coming electric guitarist from Led Zeplin (jimmy page!!!).

I would not give up any of the moments Nico and I have spent together, I knew I could not have any more children so it did not matter to me that he did things at a slower pace than others. Having a child with disabilities also gives you a sence of enjoying the littlest things in life and with your children and a non judgemental feeling to all others you see out in the world.

Just so you know, being premature did not have a thing to do with his autism, it is just something he has.

To all of you Mom's with premature babies now......you can do it, read our SUCCESS stories and realize that you WILL write your own.

 

[RachaelRol]

My one and only DS, now six was born at 30 weeks. HE was 3 lbs 1 oz and was 14 inches long. Pretty big I was told. Like many of you I was told he had a 50% chance of not being completely healthy and and 80% survival rate.

The day he was bron was both the worst and best day of my life if it makes any sense.

I had a scheduled doctor's appointment, but I knoew something was definitely wrong. For two weeks prior to delivery I had headaches, and was swelling. My doctor at the time, told me to take it easly, but my feet up and place a cold towel on my forehead. Did as was told, since this was my first pregnancy and I didn't know better.

Fast forward to my next appointment, blood pressure was extremely high, spilled level 4 protein into my urine and I gained 21 lbs in 3 weeks. After only gaining 18 during the first 27 weeks. Needless to say I was sent to the hospital. Alone and in a cab since I took the train to work and DH was at work.

I get to the hospital and find I was having contractions, 12 minutes apart. Never felt them, had no idea. After a series of tests and being questioned about drub abuse I was transferred via ambulance to a hospital that handled early deliveries.

New Dr./specialist ran test, hoping I could either go home on bed rest, stay in hospital for two weeks, then deliver or at least 3 days so steroid treatments could hel DS lungs.

Silly me, I was fighting saying I had to go back to work. I also fought with the doctors and nurses because I wanted to pee in the bathroom, not in a bed pan. They taught me a lesson and inserted a catheter.

Well,bad test results, required delivery that night.

I had a c-section, found out my uterus is upside down if I remember correctly, threw up on the delivery table and had a reaction to the epidural.
Dr. said had I not had appointment I would have stroked or seizured within 48 hours.

I remember very vividly, DS peed as we welcomed the world and cried. DH follwed him along. My parents made it in from Maryland and my siblings and in laws were all in the hospital.

DS held his own for the first couple days. My liver and kidneys returned to normal. I was not allowed to see him for 3 days. T

he first time i saw him I had a break down. The tubles, IVs, covers on his eyes, the thinness of his skin. I felt so guilty. I remember apologizing to him over and over. Had I not been sick he would not have suffered.

Shortly after seeing him his lung collapsed. He was not doing well at all and doctors said he was 50/50 and may not make it. He had our priest come to the hospital and baptize him. He wore a white cap knitted by some volunteers and a diaper. My sister and BIL are his god parents and my mom videotaped it. I remember asking God to take him and not let him suffer.

I was discharged that day.DH and I were devestated by leaving him there. I wanted to stay, but my DR insisted I rest. DH and iwent to the hospital every day. I dragged myself there every day. We lived on the 3rd floor walk up apartment and I wasn't supposed to go up and down but I didn't care. I also went back to work two weeks after delivery so I could use my time off when he came home. I still went to see him everyday until late at night.

After his baptism, he started to improve. I believe God saved him and us. DS, spent 35 days in the hospital, came home with the apnea monitor. He developed just fine. Hit his marks at or before his adjusted age. He has asthma that kicks in around dogs/cats or during colds but is otherwise fine.

Reading all of your stories remind me of the Opthamologists appointments, RSV synagis shots, learning infant CPR, apnea monitors. I also remember sleeping with lights and music on because he was used to the noise.

It is a very special bond we share and our preemies are special children. They are fighter and determined. DS is 54 lbs and 47 inches tall and just fine. What more could I ask for?

This experience left me gun shy to have another, I'll be 34 on 9/13 and the clock is ticking. I have an appointment with a new doctor on 9/10 to see if it is a good idea to try again. We want another child, but I will not jeopardize being around for my son at full capacity for it.

I love this thread... Thank you for sharing. I do believe this is the longest post I have ever written. sorry...

Rachael

 

[MSSANDRA]

Your story of noise and lights reminded me of our comming home problems. Ds had a "sweet" little music tape that the nurses played for him in his isolet. It calmed him down like nothing else We knew he loved it and it was always on when we got there but did not realized it was on 24/7. Fast Forward comming home and we put him to bed the first night and turned the tape on. All was well for Exactly 37 minutes. The tape stops and DS screams. Flip tape, start and all is well for 37 minutes. AGGGGG. In the NICU there is always someone up to flip, not so at home! it took about a week to wean off of it. funny now but was not then.

 

[Statler]

Sorry for the bump, but I wanted to tell you how therapeutic it was to read this thread. Our daughter is in the NICU right now. She was born on Sept 12 at 1 pound, 10 ounces. My wife had severe preeclampsia so she had to have a c-section at 28 weeks after 4 weeks at the hospital. But so far our baby is doing great! She's gaining weight from breastmilk with extra calories added to it and shes up to 2 pounds, 5.8 ounces. We hope she will be a big princess in no time


I have a question for you. I know I'm getting waaaay ahead of myself, but how far along were your babies after a year? I know everyone is different but I wanted to take our first family trip to Disney World to celebrate her first birthday. I figure she's such a miracle that DW is the only place worthy of hosting such an event! Would it be a major mistake?

 

[mommylicious]

My first DS was a preemie. He was 5.5 weeks early. I remember the night they brought him to the NICU and just being devastated then going to visit him and looking at the other babies in his "pod." I sat there sobbing. Partially because I was upset at seeing my baby with all the monitors and wires etc. and partially b/c I was so thankful that he was doing as well as he was and realizing that the road ahead of us was so much smoother than the road ahead of some of these other precious little ones.

We tried for almost 3 years for DS #1 and were on our last round of injectable fertility meds and IUI before moving on to IVF when I got pregnant with DS. Since we did an IUI with triggered ovulation there was no confusion about his conception date (he was 7 lbs at birth so that was the first thought of many of the nurses...your dates must have been off...). Everything seemed great for us untill about 18 weeks. We went house hunting and later that night I started bleeding pretty heavily. Went to the ER just positive I was losing the baby. I had 4 previous miscariages so I was sure this was #5. The ER doctors did an ultrasound and said everything looked OK, did an exam and said my cervix "appeared closed" so they sent me home and told me to see my doctor the next day. My OB said I had a low lying placenta and had small tears in the placenta so I was on bed rest for a few weeks.

Everything was fine again untill 25 weeks when I went to the bathroom at work and had some spotting. Called the doctor and was told to go to L&D as it was 4:40 pm and the office was closing. I earned a 3 night stay for that as I was starting preterm labor. I went home on bedrest with orders that I was only to get out of bed to pee, to go to my appointments or to shower no more than 3 times per week untill further notice. I was told further notice would be untill 36 weeks or I delivered, which ever came first.

I started developing preeclampsia around 30 weeks. When I went in for one of my twice weekly appointments for fetal monitoring at 35 weeks I had such a severe increase in swelling that since my last appointment my feet had gotten so big I had gone out and bought a pair of mens canvas sneakers, cut the tongue out and had to cut from the top of the laces up to the rubber at the top of the shoe in order to get my foot in them. The doctor looked at my feet and at my BP and said "I hope you have your bag, you are to go straight to the hospital. Don't even stop to eat anywhere." I got there and had bloodwork done, was given the mag sulfate and a shot to help develop DSs lungs. They told me they would hold off as long as possible monitoring DS constantly and me with blood work 3 times per day but that I was already showing signs that my kidneys and liver were being affected so as soon as I had any change, we had to deliver. That was on a Monday. On Wednesday morning they told me that was the day, he would be born within 12 hours or I'd have to have a c-section so they started the pitocin. DS was born that evening.

He was 7 lbs even and seemed to be doing great. The NICU team was in the delivery room and agreed to let him stay with me for about 30 minutes before they took him since he was doing so well. By the time they took him, I was a dishrag so the nurses gave me something to help me sleep. The next morning they told me they were sending DS back to me b/c he was doing just great. The orders were that he was to go to the nursery if I went to sleep so that someone was watching him at all times though. He seemed to do fine most of the time but after I would feed him, he seemed to have trouble breathing occasionally. I told the nurses and they thought it was a result of me being on the mag sulfate for 3 days before he was born. That night DH stayed with us at the hospital untill around 11:30 when he left to go home and feed our dogs. I sent DS to the nursery around 12:15 when I was ready to go to sleep. At around 2:00 a nurse came in my room and woke me. She sat on my bed, took my hand and said "where is your husband?" I lost it right then. Nothing good could follow that. She told me DS had turned blue in the nursery and his heart slowed down. They revived him and sent him to the NICU. She told me the neonatologist would come talk to me as soon as they were done admitting DS. He came at around 3:20 am. DH had his cell turned off and the batteries were dead on the cordless at home (we had just moved in to that house and had only unpacked that one phone) so DH wasn't there and I was not handling things well alone, tired and scared. They told me they had already done a mag level and that wasn't it but that I could go see DS when I was ready to and that they would do some tests in the morning. I went and held DS for as long as I could keep my eyes open that night.

Long story a little shorter...DS was diagnosed with severe reflux. He would stop breathing when he would reflux and being a premie, he lacked the reflex to make him try to take a breath when he needed it. They said he was "borderline" for pyloric stenosis. He spent 2.5 weeks in the NICU before being released with 3 different meds, instructions for feeding and sleep positioning, never to crunch his tummy, to hold him upright and still on my shoulder for 30 minutes after eating and to add 1 TBSP of rice cereal per oz to his feeds. They were like sludge, but they helped. We were gradually able to reduce that to 1 tsp per oz after a couple of months. We had 3 seperate overnight stays at Children's Hospital from apenic episodes but every month he got better. Everyone at the peds office knew him as "the big preemie reflux baby." He was 7 lbs at birth and I always got a real kick out of seeing new nurses come in and look at his chart. They'd look at him, look at the chart, back at him and say "he's not a preemie? he's too big!"

He's now a very bright, happy and active 7 year old.

I love hearing everyone else's stories. It reminds me of how I felt that first night, I was scared for my child but realizing that as far as issues in the NICU went, we were very lucky. NICU parents are always an inspiring bunch.

On the flip side, when DS #2 was born it felt so weird that they let me leave the hospital with him, without monitors and without a huge list of appointments to go to later that week! I felt like "so that's it? we just go? really?"

 

[fakereadhed]

I know everyone is different but I wanted to take our first family trip to Disney World to celebrate her first birthday. I figure she's such a miracle that DW is the only place worthy of hosting such an event! Would it be a major mistake?

Congratulations on your new baby girl!!!

As you said, everybody is different, but you can count on using your baby's adjusted age(how old they would be if they were born on their due date)until they are 2. So, if you go when she is actually 1, you will really be traveling with a much younger baby in reality. Just something to keep in mind when considering timing of a trip to WDW.

 

[tweedlemom]

Sorry for the bump, but I wanted to tell you how therapeutic it was to read this thread. Our daughter is in the NICU right now. She was born on Sept 12 at 1 pound, 10 ounces. My wife had severe preeclampsia so she had to have a c-section at 28 weeks after 4 weeks at the hospital. But so far our baby is doing great! She's gaining weight from breastmilk with extra calories added to it and shes up to 2 pounds, 5.8 ounces. We hope she will be a big princess in no time


I have a question for you. I know I'm getting waaaay ahead of myself, but how far along were your babies after a year? I know everyone is different but I wanted to take our first family trip to Disney World to celebrate her first birthday. I figure she's such a miracle that DW is the only place worthy of hosting such an event! Would it be a major mistake?

Best of luck to and your family! So glad you are finding comfort in this thread. Congratulations and keep us updated on how everyone is doing!

 

[Mean Queen]

Sorry for the bump, but I wanted to tell you how therapeutic it was to read this thread. Our daughter is in the NICU right now. She was born on Sept 12 at 1 pound, 10 ounces. My wife had severe preeclampsia so she had to have a c-section at 28 weeks after 4 weeks at the hospital. But so far our baby is doing great! She's gaining weight from breastmilk with extra calories added to it and shes up to 2 pounds, 5.8 ounces. We hope she will be a big princess in no time


I have a question for you. I know I'm getting waaaay ahead of myself, but how far along were your babies after a year? I know everyone is different but I wanted to take our first family trip to Disney World to celebrate her first birthday. I figure she's such a miracle that DW is the only place worthy of hosting such an event! Would it be a major mistake?

Congrats to you and your wife on your new addition. While my preemie was never as small as yours, she was almost totally caught up by a year. I think a trip to Disney would be great for yours, as long as there are no other health problems. We took ours to WDW for the first time at 4 months (we're local.) Disney is really made for kids of all ages, even babies.

 

[GEM]

Sorry for the bump, but I wanted to tell you how therapeutic it was to read this thread. Our daughter is in the NICU right now. She was born on Sept 12 at 1 pound, 10 ounces. My wife had severe preeclampsia so she had to have a c-section at 28 weeks after 4 weeks at the hospital. But so far our baby is doing great! She's gaining weight from breastmilk with extra calories added to it and shes up to 2 pounds, 5.8 ounces. We hope she will be a big princess in no time


I have a question for you. I know I'm getting waaaay ahead of myself, but how far along were your babies after a year? I know everyone is different but I wanted to take our first family trip to Disney World to celebrate her first birthday. I figure she's such a miracle that DW is the only place worthy of hosting such an event! Would it be a major mistake?

Hey! Congratulations on the new little Princess! I'm glad she's doing so well.

My son (who's story is much earlier in this thread) was born at 27 weeks and was 1lb and 7oz. He spent 83 days in the NICU, but did very very well.

We were able to take him to Disney World for his first birthday! It was such a great celebration of life for us. If you click on the link in my signature you can see our Disney pictures. The ones from the "May 2004" trip are the ones from that first visit. Remember, when you look at those, he is just over 12 months old. He looks more like a 6 month old. It was a great trip for all of us! That said, he really didn't have any lingering issues other than his small size. He never had any lung problems, etc. after leaving the hospital. And, his birthday was in May - not during RSV or Flu season.

Now, at 4.5 years old, he's still tiny - 38 inches tall and 29 pounds (about the 10th percentile for height and 5th percentile for weight). But, he's doing just great in every way! He's very healthy, bright, and loves life!

Best of luck with your little one!

 

[karenTX]

Sorry for the bump, but I wanted to tell you how therapeutic it was to read this thread. Our daughter is in the NICU right now. She was born on Sept 12 at 1 pound, 10 ounces. My wife had severe preeclampsia so she had to have a c-section at 28 weeks after 4 weeks at the hospital. But so far our baby is doing great! She's gaining weight from breastmilk with extra calories added to it and shes up to 2 pounds, 5.8 ounces. We hope she will be a big princess in no time

Congratulations!!! My DD was the same size as yours! We're still playing catch up! As of today, at 31 months, she's 32 1/2" and 21 lbs. Small and Skinny!!! She doesn't eat really well, very very picky so that doesn't help much.
We promised her in the NICU that we'd take her to WDW as soon as we felt we could. We waited until she was 18 months. Her docs wanted us to wait until well after her first RSV season and Synagis shots. But they also wanted us to be back well before her second RSV season began. I think taking your DD really depends on how well she does after shes out of the NICU. I would also try to avoid RSV season if at all possible, especially if you'll be flying. Please keep us updated on hows everyones doing!!

 

[Statler]

Thank you guys for you kind words and stories!

My wife and I were supposed to go to Disney in August but the doctors told her she couldnt go the day before we were supposed to leave! (due to pregnancy complications)

We were talking about wanting to go to Disney for our daughter's first birthday, whenever it was. Then a few hours later she had an ultrasound and they told us that they needed to do a c-section that day! So I figured it was meant to be.

Gem, thanks for the photos. Love the one of him pointing at Mickey!

 

[ldo]

For those wondering about "catching" up--the "old" rule for preemies, that they catch up by their gestational age and all by 1 yr is just not true. There is just no way that a 25 weeker and a 35 weeker have the same neurological make-up.

I think that you have to take the severity of the prematurity and then add extra time. For ex., now at 6 yrs old, my preemies are about average ht/wt and skills for their age. But when younger, both in size and development, they were several months behind their peers in certain development--from feeding to potty training to learning to swim. But they progressed steadily and their cognitive skills were evaluated in the normal range.

So, for the more severe preemies (esp. under 28 weeks), do not expect them to "catch up" by their due date or even for the first few years----DD didn't even make up to the 5% growth chart until she was 3 years old--but she is happy and healthy and now at 25% at age 6, while her twin brother is now at 40%.

good luck to all! Elaine

 

[ldo]

re. below--I would see how you feel after the winter. It's not so much a preemie thing as a baby thing--see how you feel and then decide.



"I have a question for you. I know I'm getting waaaay ahead of myself, but how far along were your babies after a year? I know everyone is different but I wanted to take our first family trip to Disney World to celebrate her first birthday. I figure she's such a miracle that DW is the only place worthy of hosting such an event! Would it be a major mistake?"