Moms of 28-32 weekers...

MrsSarahB

I've been diagnosed with a twin molar pregnancy (one healthy baby and a molar pregnancy)- here is my first post about the situation: https://community.thebump.com/cs/ks/forums/thread/31905682.aspx

 My doctors are hoping to get me to at least 28 weeks, my goal is 32 but we have to see how it progresses. I've been trying to get a feel for what to expect at either time but the medical information doesn't tell you as much as real life experience, as I'm sure you all know. If you don't mind, would you share how your little ones did at around this time (time spent in the NICU, developmental delays, health problems, etc.)? I'm trying to be as prepared as I can because I know it's going to be a very difficult situation and I'd rather start learning about it now!

Thank you for any information you're willing to share!

mek10976

My DS was born at 32 weeks (3lbs. 11oz.) and spent 27 days in the NICU.  He was mostly a grower/feeder.  Around his 3rd week, he developed reflux and would have bradies about an hour after his feeds.  That kept him in the NICU for an extra week until they could see if meds were working.  He also came home on an apnea monitor for the bradies.  He had it for 6 weeks and they were pretty uneventful weeks, which was good.  Once he was home, he grew like a weed and was finally in the 50% at 4 months actual.  He did have torticollis from being crammed in my rib cage, so he received physical therapy until 7 months.  Around 9 months, the flat spot on his head hadn't rounded out, so he got a helmet to correct it.  He has had chronic ear infections since 10 months, so now he is getting tubes in a week or so.  We are also back in PT for gross motor delays (didn't crawl until 2 weeks ago).  But all in all, he has done really well.

Rachel&Joe

I am so sorry you are dealing with something so scary so early in your pregnancy.

I delivered at 28 weeks, 3 days.  DD has bad bad lungs & was in the NICU for almost 2 weeks past her due date.  She came home on O2 & just came off around Christmas (so she was on some for of O2 for about 7 months).  She always has nasty reflux & is very underweight, even for her adjusted age.

Otherwise, she is the light of our lives.  I lost 4 babies before finally giving birth to Stella so she is our little miracle no matter how she turns out.  She does have a slight gross motor delay but otherwise is on track with her adjusted age.

Honestly, there is absolutely no way to tell how things will go for you.  As I am sure you already know, every preemie has their own path, regardless of what gestational age they are born at.  Hopefully it's not something that you will even have to worry about.

Good luck & hang in there.

lstaylor73

Wow, that is rare, I'm so sorry. 

My boys were born at 28wks 6days due to severe IUGR in both boys, but especially in Baby B (that's Evan).  In the beginning when we found out it was twins at 9 wks we were told that Evan would probably be a vanishing twin syndrome thing because he was half the size of the other baby.  But he hung on and we lived day to day because looking any further than that is too hard to do.  We made it to 28wks 6days when Evan went into distress due to full endiastolic reversal of blood flow and I ended up having my "planned" emergency c/s (we knew this would happen eventually, we were just trying to give both boys as much time to grow as possible and pull them out at the last possible second).  Cameron was 2lbs 15oz and 15" long, Evan was 1lb 7oz and 12" long.  Both were immediately on vents and biliruben (sp?) lights and TPN.  Both had issues with breathing, infections, several blood transfusions, eating and severe reflux, and PDA's in their hearts.  They spent 67 and 68 days in the NICU and Cameron came home on oxygen and an apnea/brady monitor until he was 6mos old.  They both, especially Evan, had/have low muscle tone and are/were developmentally delayed but have caught up in all areas with the exception of speech (typical for boys with their background) and most of all for feeding as they are on G tubes and do not eat by mouth.  To look at my boys you would never ever know they were preemies, they walk and talk and do pretty much everything kids their age do, finally, with the exception of eating by mouth.  It has been a very long road, frustrating and scary, but I would not trade it for the world because my boys are so amazing and will be caught up to their peers in every way in their own time. 

((HUGS))  Let me know if you have any other questions.

ssg73

I am sorry you are going through so much.  Ella was born at 30w 4d and was in the nicu for 69 days.  She was very small for her gestation 2lb 5 oz and was a slow gainer.  She had a pda which was treated with medication, intubated for 12hrs, she was on cpap for her breathing 3 days, nasal canula for a month or so.  Her main problem was bradies where her heart rate dropped.  This kept her in the hospital for about 2-3 weeks after all her other problems resolved.  She is now a happy 7 month old and is hitting milestones some where between her actual and adjusted age.  She can roll over and sit for short periods of time.  She weighes about 15lbs.

ijack

Hugs to you  

My daughter was born at 29.5w and we've been very lucky. She's never been a great eater and had issues with her bili level due to the blood she ingested and my placenta problems, but other than that it's been a good road. She was in the NICU for 50 days; the first 3 weeks we were dealing with her bili #, then it was breathing and then it was learning to eat. She's extremely small for her size and FTT, but she's hitting all her milestones for her adjusted age and is about to have her 2nd birthday.  

ssg73

I should also say that I have a friend who had a molar pregnancy that was malignant.  She is fine now. If you would like the details you can pm me.

meldoo2002

Our boys were born at 30w3d.  They were 3lbs.6oz. and 3lbs.12oz.  They spent 5 and 6 weeks in the NICU... there at first to breathe  (Nathan was on a vent for a day), eat (they were gavage tube fed at first and then learned to bottle and breastfeed), and maintain their temp. They were in isolettes for awhile ... I want to say until about a week before they came home.  They both had jaundice and went under bili lights.  One only for a day and one for a few days (is it bad I can't remember which one).  The boys had episodes of apneas and bradys where they stop breathing and their heart rates drop, but they grew out of these episodes as they got older (very common in preemies).  Now they are healthy... well right now they have colds... 1 year olds!  We have some gross motor delays like they just started crawling last month, but overall they are healthy little guys!  Goodluck with your pregnancy.. I'm sorry you're dealing with this )c:  

kkh2002

I delivered at 27w3d, so a bit earlier than you're asking about.  My water broke at 23w1d so I had little to no measurable fluid for a month prior.  DD spent 109 days in the NICU, was on a vent for less than 48hrs, on CPAP for less than two weeks and on O2 canula until her original due date (88 days).  She had several transfusions (typical), rickets, a PDA that closed after one round of meds, but no IVH, no ROP.  She would have been discharged on or before he due date, but swine flu held us back three additional weeks.

We've been home almost four months now and physically/developmentally she's right on track for her adjusted age.  As far as we can tell right now, she has no lingering health problems.  Though I suspect that asthma will eventually be a problem, mainly because I have a family history of it, not so much because she was a preemie.

Good luck!!

 

MrsSarahB

Thank you so much for all of your responses! I know no one can predict how our baby would fare but just hearing all of the different outcomes helps to prepare me for the different things that could be thrown our way. Right now I'm just hoping to make it to viability at all but if we can my goal is to obviously keep this little one inside for as long as my body will tolerate.

Thank you again and if anyone else has stories I really appreciate it!

FutureMrsDenman

DD was born at 28 weeks exactly weighing in at 1 lb 11 oz.  She was in the NICU for 88 days.  She is now 27.5 months old and is doing very well - social, smart, good sense of humor (she started telling knock knock jokes this week - LOL).  She did have developmental delays and qualified for EI services for them (saw 2 specialists a couple times a month for a while).  But the delays were not really severe.  She was just on her own schedule. 

In the NICU - she was on the vent for a couple days (steroids pre-birth probably helped there), then CPAP, then cannula - with a setback back to CPAP for about a week then back to cannula.  She had typical preemie apneas and bradys.   She also was jaundiced and anemic (typical preemie problems) and required billi lights for a while and a couple blood transfusions.  She also had a UTI, another infection scare (turned out they never found anything), and a couple NEC scares that required her to be taken off feedings while they watched her for a while.  She was SLOW to get the suck/swallow coordinated and had daily OT sessions to work on that for a long time.  It was 11 days from her birth to the first time I was allowed to hold her.  After that we did kangaroo care as often as they would let us.  I pumped and she was given by milk throughout the NICU stay.  We tried BFing and were somewhat successful for a while (only allowed 1 - 2 sesions a day), but I ended up pumping and feeding her breasmilk bottles most of the time because she required fortified and thickened feedings.

I hope your LO can stay put for a long time!

TaraJV

How very scary!  I hope things end up going very well for you!

DD was born at 29w2d.  She weighed 2lbs 3oz and 15 in long.  She spent 7.5 weeks in the NICU, 5 weeks on CPAP, feeding tube up until a few days before discharge.  She had lots of apnea/brady's and came home on caffeine and an apnea monitor.  After coming home she had some slight feeding issues and slow weight gain but that was really it.  She's now 13 months old and weighs 17 lbs.  Developmentally she falls somewhere between her actual and adjusted ages. 

Big hugs to you and prayers that you have a long and healthy pregnancy!

AFwife1106

My water broke when I was 27w3d and I was on hospital bed rest until I went into labor on my own at 28w6d.  They adjusted her back to 27w based on exam when she was born.  She was 2 lbs. 3 oz.. She acted more like a 29 weeker in the NICU though.  She was classified as a grower-feeder because she had no major complications.

I got the steroid shots for her lungs while on bed rest.  She was on the ventilator for 6 hours and CPAP for 8.  She was on a nasal canula the entire time after that.  She came home on oxygen, but she was only on it for a few weeks.  She has hopefully her last appointment with the pulmonologist next month.

She spent 62 days in the NICU and came home almost a month early.  She came home at 5 lbs. 7 oz.  

She's a total fatty now.  She's about 14.5 lbs and 6 months old.  She has words and "talks".  She'll roll over sometimes and isn't delayed.  She has a flat spot from the NICU but that's about it.  She got a cold last month which was just a bad runny nose for a while.  We've been SUPER lucky with her so far.. she's doing so much better than the doctors could have expected.  She got on the regular (non preemie) growth charts at her 4 month appointment and at 6 months she was at 25% for weight and 10% for height.  

The NICU is hard, but if you know it's coming, I think it helps a little.  I knew we'd be in the NICU when my water broke.  Every baby is different.  Our 27 weeker did better than some of the 30+ weekers.  They told us that everyday that she stayed in saved us 2 - 4 days in the NICU.  I think the biggest reason she did so well was that I was able to pump the entire time she was in the NICU.  Once she started feeds, she put on weight and never looked back. 

Anyways, GL!  The ladies here are super helpful, so feel free to ask any questions.   

SBMBride406

So sorry you're going through this. My 32 weeker spent 28 days in the NICU. He needed some help breathing initially (and was jaundice, had a low white cell count, anemia and a small brain hemmorage) but most of the time he was a feeder/grower. We had a set back 10 days after we left the NICU and he spent 2 more weeks in the PICU (bacterial meningitis, but that could have happened regardless of his prematurity). He had some minor developmental delays but was pretty much caught up by 6 months. He's still fairly small (b/t the 10th and 15th percentile) and has asthma, but other than that, he is perfectly happy and healthy. Good luck!

We always recommend "Preemies: The Essential Guide for Parents of Premature Babies" as a good starting point for navigating the NICU (but don't read it all...just the pertinent parts).

Keep us posted!

Ktbuss

My Lo was a 28 weeker 2.5 lbs and spent 89 days in the Nicu for the most part it was a fairly unevent for stay.  He was on a vent for the first 3 days and then low flow for a while.  He had issues with eating and reflux which is why his stay was so long.  Good luck and I hope you make as long as you can.

SuwaneeGirl

My daughter was born at 32 weeks with IUGR and because I had pre-eclampsia. She was 3 lbs, 14.5 oz and 17.5" long.

She stayed in the NICU about 28 days to grow and learn how to eat. She also had jaundice pretty bad.

She ended up having a brain bleed, which is common in preemies, but it closed up and hasn't been a problem or concern since about 3 months old.

Other than that--she's awesome. She is now 21 months old, 28.5 lbs and 34" tall (we're tall people). She is talking up a storm, no developmental problems or delays at all.

I stopped thinking of her as a preemie around 6-7 months, because that's when she started to catch up to normal sizes and so on. 

Best of luck.