Toddler and Older Preemies

Missa_g

Hi everyone! I thought it might be neat to check in on our older preemies. I would love updates on everyone and I'm sure for the newer moms it might be interesting to see where our kids are at 1+ years down the line.

How old is your preemie now? What gestation were they born at? What caused their premature birth? What complications did they face in the NICU and how long were they there? How are they now? What fun things are they up to?

Missa_g

My boys are 22 months old. They were born at 29w4d due to PTL after being on hospital bed rest for ten days. J was 2lbs13oz and S was 3lbs3oz. J had a pneumothorax and a grade I brain bleed. S had more significant breathing problems and a grade II brain bleed. They spent exactly 2 months in the NICU. After homecoming they were both diagnosed with torticollis and received PT. J's tort caused plagiocephaly and he spent four months in a DOC band helmet.

Now you really would never guess that they were over ten weeks early! J has been receiving speech therapy for a moderate delay that is almost completely resolved now. He's still a small guy at 23lbs but both my husband and I are on the smaller side so that's not too shocking. He is such a mischief maker and has very little fear. He loves to "read" books and climb all over the contraptions at the playground. S is almost 28lbs and extremely verbal. He just started singing along to songs, it is so cute to hear his sweet voice! Approaching two is such a fun and challenging age. I'm so proud of how far they have come.

Pips09

My daughter is now 2 1/2. I can't believe it! She was born at 30w4d, due to a combo of PTL, PPROM and placenta previa. She was mainly a feeder/grower during her 5 week NICU stay, after coming off the CPAP, but did have some extra trouble with A & Bs and came home on an apnea monitor after 5 weeks. We dealt with lingering feeding issues and a whole lot of sleep issues. But she is doing great now. She surprises me everyday with something new she's learned and how funny she is. It's pretty awesome! 

I can remember so clearly when she was a newborn, thinking how we would ever get to a year, or even here, and it fills me with so much joy to see how far she's come.

ETA: She was born at 3 lbs, 9 oz and is now almost 29 lbs.

Bluebird2318

How old is your preemie now? About 19.5 months actual, 17 months adjusted.

What gestation were they born at? 29 weeks 0 days. 

What caused their premature birth? Preeclampsia and HELLP syndrome. 

What complications did they face in the NICU and how long were they there? Her NICU stay was mostly uncomplicated. She needed a platelet transfusion once, but for the most part she did as well as you can expect. She was there for 64 days.

How are they now? She's doing great! She's very social and sweet, but I'm starting to worry some that she isn't walking on her own. She's never been really behind on milestones before. 

What fun things are they up to? She's getting a lot more talkative these days! She's got about 15 words or so, and she has just started using two words together (rarely, but it happens). She is also going to be a big sister to a little brother in April!

thishappyhouse

How old is your preemie now? 28 months

What gestation were they born at?  25w 0d; 1lb 7oz

What caused their premature birth? Incompetant Cervix.  I now have a Transabdominal Cerclage in preparation for a future pregnancy

What complications did they face in the NICU and how long were they there? She had a 124 day NICU stay with the whole alphabet soup of diagnoses.  BPD/CLD was probably her biggest issue as she was intubated for 8 weeks.  PDA, Stage 2 ROP, Kidney Stones, Pneumothorax x3, 2 infections, low bloodpressure, pulmonary hypertension at discharge, & sever feeding issues. 

How are they now? She is doing really well!  We have dropped all of our specialists with the exception of nephrology and urology.  She gets PT once a week and Speech once a month. 

What fun things are they up to? She is learning to run and jump and is now stringing 3-5 word sentances together.  She is so so fiesty and strong willed which is challenging but keeps things fun and interesting.  

punky917

I love this idea and after reading through some posts, I am pretty sure DS is one of the oldest ones here.

How old is your preemie now? 5 1/2 years

What gestation were they born at? 26 weeks-2lbs 1oz 13 inches

What caused their premature birth? It was unknown at the time (although I had pprom for 2 weeks before he was born). But after being pregnant with DD and being closely monitored, they found that my cervix started to shorten at 21 weeks and it was basically 100% effaced (but closed) for the last 12 weeks of pregnancy-I have no idea how my DD got here FT. lol! I guess the P17 shots worked! MFM didn't think that it was IC, but definitely insufficiency of some kind. She started to talk about what she would do when we got pregnant with #3 and I before she even said 2 more words I said that we were DEFINITELY done with 2!

What complications did they face in the NICU and how long were they there? DS was in the NICU for 127 days; He had a PDA, CLD, grade 3 IVH on right side of his brain, broviac catheter surgery, on the vent for 2 months due to pneumonia twice; ROP (which resulted in loss of vision in his right eye by the time he was 2), He would have been in the NICU longer but after his laser surgery for his ROP, he had a cataract in his right eye and we had to get it removed by a doctor who specialized in it in another state; acid reflux and has been on Prevacid all this time; he came home on O2 and a feeding tube which he had for 2 months

How are they now? He is awesome! I cried forever when I found out he had a brain bleed because I thought that meant it was definite that he was not going to be a "regular" kid. He started reading when he was 2 and I thought he was just memorizing words when we read to him. Eventually, I found out that he was actually reading and out of curiosity his preschool teacher tested his reading and it was at the 3rd grade level! I am continually amazed by him and count my blessings every day. He has adapted well to only having one eye working, but my heart breaks every time I see his eye feeling like I failed him. Still a tough subject for me...

What fun things are they up to? He LOVES to learn!! Mainly about other countries and languages, but lately just anything science related. If you let him, he will stay on the computer all day learning! We obviously limit his computer time and this will be his 3rd year in preschool because I wanted to make sure he had the social skills he needed before entering kindergarten. So he is going to kindergarten in the fall! There might possibly be some tears shed-just not by him!

punky917

@BostonKisses2 I totally thought the same thing when DS was 3! We didn't have problems with him when he was 2 and I was waiting for it to come. When he turned 3, it was like a switch turned on and he was much more difficult. It was like he had the terrible 2's but with back talk since he was talking much more. I knew I had it too easy! lol!

KatFCo

How old is your preemie now? She's 6 and a half

What gestation were they born at? 23w6d

What caused their premature birth? Spontaneous preterm labor. I didn't even realize I was in labor until I was about 7 cm

What complications did they face in the NICU and how long were they there? She ran the gamut: NEC surgery; had an ostomy bag for 12 weeks and then had the reconnection surgery; PDA surgery; on C-PAP for 14weeks; mild ROP; 11+ blood transfusions (I lost count); infections; and came home on O2.

How are they now? Other than asthma and several scars, she's fine.

What fun things are they up to? She's in first grade and reading at the end of second grade; has an incredible imagination and s very strong-willed

haziedaze

DS was born at 29w4d (lots of 29 weekers here!), 3lbs 7oz. He's now almost 2.5yo.

I had lots of preterm contractions and was 1cm dilated at 27 weeks, then went into labor at 29w3d with a placental abruption. It's a little chicken and egg about whether it was PTL or just an abruption that made him come. I'm on P17 this time and contracting like crazy but cervix is still long and closed. I'm on modified bedrest and nifedipine for the contractions which we didn't do last time- tomorrow I will be more pregnant than I've ever been!

He was intubated for 18 hours and had some Bp issues initially then on CPAP for 3 days. He had a few bloody stools with bilious residuals but always ruled out for NEC (hate the fortifier!). Then he was a feeder/grower and came home at 35 weeks adjusted.

He's doing great, caught up by 2 (although sometimes he stills seems slightly behind kids his age to me). He does have asthma and is on a good dose of inhaled steroids to manage it.

2 has been fun. He's singing songs now and has a funny little sense of humor (this morning he woke up in our bed shouting, "Daddy, daddy, come! Hen-wy pee in Daddy bed! Uh oh!" He had wet through. He's stringing more and more words together which is fun!

Bluebird2318

@haziedaze Your DS1 sounds adorable! Congratulations on passing your milestone tomorrow! I'm pretty sure 29w1d was my favorite day this whole pregnancy for just that reason. And then 29w2d was my favorite, and then 29w3d... And so on and so on! Let's keep it going until April!

mcvgal

How old is your preemie now? DS is 27 months

What gestation were they born at? Born at 30w3d 

What caused their premature birth? Pre-e/HELLP

What complications did they face in the NICU and how long were they there? Juandice, A's and B's, 40 day NICU stay. He came home with a monitor and was taken off the monitor exactly one month later.

How are they now? He is totally caught up and was release from preemie follow up clinics a few months before his second birthday. He is speaking more and more each day and is speaking both english and spanish words/phrases correctly. He's totally a momma's boy right now (which I love). I think he can start to sense the new LO is on the way because he wants more attention than ever lately.

What fun things are they up to? He loves helping me out in the kitchen and helps make breakfast on the weekends. He also loves running around everywhere and throwing himself on the floor/jumping.

haziedaze

Thanks @bluebird2318...can't wait until April!!!

@e_cruiz looks like we're going to have similar spacing. My son has really clingy for a while too, then when I stopped being able to wrestle/lift him he turned all Daddy's boy. I'm kinda sad but it's actually kinda nice and makes me a little less worried for #2's arrival. Can't wait to see my son as a big brother, how about you?

JoJoGee

How old is your preemie now? 

3 years. 

 What gestation were they born at? 

26w2d. 

 What caused their premature birth? 

HELLP syndrome. 

What complications did they face in the NICU and how long were they there? 

She was in the NICU for 123 days.  She had difficulty extubating and eating.  She also developed Kidney Stones and reflux. She came home with a trach, oxygen, pulse-ox, g-tube and feeding pump. Along with several medications.

How are they now? 

Trach was removed in November and she weathered her first cold post trach with flying colors (no doctor visit, no hospital stays, no respiratory difficulties, nothing but a runny nose and a slight cough!). We're still working on feeding but she's interested (so that's a positive). She has been diagnosed with CP, but gets around great in her wheelchair.  She still has a host of medical issues and specialists - OT, PT, Speech, Feeding Therapy, Aquatic Therapy, Nephrology, Urology, Orthopedic Surgery, Rehabilitation, CP clinic, Neurology, Nutritionist, Gastroenterology, ENT, Pulmonary, and Ophthalmology - but, she's smart and very sociable.  She's learning how to talk post-trach and is picking up new words all the time. 

What fun things are they up to? 

She just started preschool and is making friends left and right. She loves to make music, read books, swim and color. She's really bloomed in the past year and a half.

PhillyGal34

How old is your preemie now? 20 months 

 

What gestation were they born at? 31w5d 3lb 5 oz and 17 inches 

 

What caused their premature birth? They labeled me as severe pre-eclampsia with neurological complications ... but they weren't 100% sure that was right! 

 

What complications did they face in the NICU and how long were they there? He was in for 26 days and other than jaundice we didn't have any real complications.  We were extremely lucky. He was basically there to grow and learn to eat.

 

 How are they now? He's a total monster haha He's running, climbing, talking, and learning something new every day. We went to PT for torticollis for about 2 months and also had an issue with severe anemia for about 3 months but other than he's done really well. he's been on track with all of his milestones and is on the regular growth scales at almost 50%!!! 

 

What fun things are they up to? He recently started singing and he's been putting puzzles together.  We are working on colors but everything is blue! He's also showing some interest in the potty and sat on it and farted today... it's a start I guess!  

Nita14701

How old is your preemie now? 

17 months actual (14 months adjusted)

 What gestation were they born at? 

28w0d, 1 lb 12 oz 

 

 What caused their premature birth? 

Pre-e/HELLP syndrome- emergency c section

 

What complications did they face in the NICU and how long were they there? 

She was in the NICU for 65 days.

How are they now? 

Still on reflux meds (Prilosec and zantac), dairy free because of MPSI.  We see feeding clinic about every 3 months due to GERD and slow weight gain. She receives PT and Speech therapy from early intervention.

 

What fun things are they up to? 

She's feeling more comfortable with walking. Every day she takes a few more steps on her own before falling on her behind. Having fun playing with the dog and learning new small words.

JuliaAndPete

This post is exactly why I came to this forum. I wanted to read about kiddos down the road. Our twin girls are going on 70 days in the NICU. Born at 27weeks and 1day. They had unequal placental sharing that caused our little one to be IUGR. Evie was 1lb 4oz, Ellie was 2lbs 5oz. Now Evie is 4lbs 6oz, and Ellie is 6lbs.

Eve Marie is still on respiratory support (cpap 5) and handles everything like a champ. Honestly her sister (the bigger one) gives us the most scares. She has a moderate PDA still and it scares the heck out of us. Evie is like the tortoise and Ellie is the hare. Evie is slow & steady and could win the race home. I know it's not really a race and it's bad to compare them but I'm just in such a stage of perplexity at this point. I hate not knowing what's going to happen.

I know that they are both progressing so nicely. I am fortunate enough to be with them everyday and catch rounds often. I just have so many questions about the future much like any mom would. These twins just have some added complications compared to full term kids so it's making the future extra ambiguous. I hate this.

We can all see the light at the end but we still have a ways to go. Their due date is March 11th. Slowest....winter... ever. I'm ready. I'm ready to be a sleep deprived, happy, walking zombie, with no social life, bad hygiene and a great excuse to not leave my house for a while. They've come so far and I'm so proud of them. Sometimes I think it's me that needs to catch up.

Thanks everyone!

mcvgal

@haziedaze i love the extra cuddling right now because DS had slowly started to ease up on kisses because he thinks he is as old as his 6 yr old cousin. DS has been so helpful around the house lately I know he'll make a great older brother:)

DrRx

How old is your preemie now? Adalyn just turned 2 at the beginning of the month.
What gestation were they born at? 26w 2 days
What caused their premature birth? Unknown.  I went in for a routine ultrasound at 22w6d and they told me that I had dangerously low amniotic fluid.  They were never able to detect amniotic fluid on exam, but they estimate that I had a small tear occur sometime at 21-22 weeks.  I had noticed damp panties, but nothing crazy or super soaked.  I just figured that it was the extra discharge that happens in the 2nd trimester that I had read about.  I stayed on hospital bedrest until an infection set in that triggered labor, and labor could not be stopped due to danger to myself and to the baby. 
What complications did they face in the NICU and how long were they there? Anemia of Prematurity (5 blood transfusions), CLD/BPD (was on a vent for 3 weeks, then CPAP and then nasal canulla for the rest of the NICU stay and after we got home.  She got pneumonia while on the vent, kept getting worse, ended up going on an oscillating vent, and then started doing better and stepping down), retinopathy of prematurity, osteopenia of prematurity.  She was in the NICU for 83 days before we were able to bring her home on an apnea monitor, pulse ox, and oxygen.
How are they now? She is doing fantastic! We dropped our last specialist last week (the cardiologist) who was basically only monitoring her because she had come home on oxygen and wanted to make sure she didn't develop pulmonary hypertension.  She dropped the pulmonologist over a year ago, and no longer needs to follow up with opthamology.  She is in EI and has pretty much closed all of her developmental gaps except speech.  She gets EI once a week and private speech, as well as attend preschool.  In the last couple of weeks she has really started verbalizing and using more words than ever before!   We're not where we need to be with speech yet, but we are definitely closing that gap.
What fun things are they up to?She is learning to ride her scooter, and is an absolute monkey at the playground.  The EI people, her teachers, and parents at the playground are all amazed at her gross motor skills.  Hopefully this means that I have some sort of athletic phenom on my hands!  She has also started her terrible 2's tantrums, but they're so cute I can't help but laugh.