Severe IUGR at 30 weeks - scared out of my mind

[AuntBug]

Sorry to crash the forum, I'm not a preemie mom yet. My LO is 30 weeks and has severe IUGR, estimated at about 800 grams. We're lucky that her movement is great and fluid levels are good. I have absent end diastolic flow that has been stable since diagnosis at 28 weeks.

I know that's all positive and where I should focus, but she didn't grow at all between our scan last week and this week. Nothing. And I can't seem to stop fixating on this.

I know we have a challenging road ahead, and the hardest is yet to come, but I already just want to sit and scream. I feel like a ticking time bomb and cant stop thinking of all the possible issues.

I know there is no magic cure, but I feel completely helpless. I'm failing at my first job as a mother, I can't even help her grow.

Any words of wisdom from those who have walked this path?

 

[AP]

I know a member who was in your shoes at this gestation - I'll send her this way for you x

 

[AuntBug]

Thanks sb22!

 

[twins_daddy]

We went through the same thing with one of the twins, she was 700g at birth (30 weeks). The full story is in a thread a few below this one. It's not easy but you'll be surprised just what scrappers the little 'uns are!

 

[kayshablake]

hello there ive just recently been through this ill find my thread for u to read through but it was a very rocky road and scary but hey look at us now shes 10 months old 8 corrected born 31 weeks 2 days gest 1lb 10 oz but is now fine has o2 at home 24.7 but is a bundle of joy and ive sadly never returned here after she was born as i jsut havent had the time but made alot of friends through here that added me on facebook so i jsut used facebook for support but if you ever want to talk im here i no EXACTLY what ure going through.
my baby never put any weight on for 8 weeks none whatso ever and the blood flow was reveresed then normal then she was deterioting then she wasnt it was very very hard but i made it through with alot of friends help through here and id be happy to talk to you anytime xxxx ill find the link and come back and post it xxxxxx

 

[kayshablake]

hello there ive just recently been through this ill find my thread for u to read through but it was a very rocky road and scary but hey look at us now shes 10 months old 8 corrected born 31 weeks 2 days gest 1lb 10 oz but is now fine has o2 at home 24.7 but is a bundle of joy and ive sadly never returned here after she was born as i jsut havent had the time but made alot of friends through here that added me on facebook so i jsut used facebook for support but if you ever want to talk im here i no EXACTLY what ure going through.
my baby never put any weight on for 8 weeks none whatso ever and the blood flow was reveresed then normal then she was deterioting then she wasnt it was very very hard but i made it through with alot of friends help through here and id be happy to talk to you anytime xxxx ill find the link and come back and post it xxxxxx

 

[kayshablake]

https://www.babyandbump.com/premature-babies/362499-please-give-me-hope-advice.html

here it is very sad but good came out of it xxxx

 

[AuntBug]

https://www.babyandbump.com/premature-babies/362499-please-give-me-hope-advice.html

here it is very sad but good came out of it xxxx

Kyashablake - thank you so much for replying. Wow - quite a thread. I love how supportive everyone is here - it really helps knowing that I'm not alone and others have been here and made it through.

Glad your LO is doing well All these stories give me such hope.

 

[kayshablake]

and seriously the doctors never game me hope EVER from day one she wasnt ment to make it and they told me that matter of factly i was so upset and alot of friends on the bliss website were very angry with how id been treated from the medical team as i never really had such a good jorney but now its all fantastic and things couldnt have turned out better for me...honest i know how you feel so please dont give up hope and one day soon that baby will be in ure arms and this will be all one big nitemare xxxxx

 

[Marleysgirl]

I'll find you a link to my thread too: https://www.babyandbump.com/premature-babies/183516-andrew-born-29-weeks.html

Andrew was born at 29+1 weighing 638g, or was it 658g, can't remember ... Incredibly small!

 

[AuntBug]

Kayshablake, I'm so sorry to hear how the consultants spoke to you My doctors have been very encouraging, we are getting great care.

Marleysgirl, so glad Andrew is doing well. Loved the pics on your thread.

Thank you all for sharing such inspiring stories, it really does help give me strength.

 

[Poorah]

Chin up sweetheart. My little one was estimated at 950g at 30w+1, so when she arrived at 30w+3 weighing a whopping 1150g we were delighted. Your baby will be small, but think of the growth scan as an estimate rather than a definite figure.
Nearly seven weeks on I'm sitting in transitional care learning to breastfeed my little one who has just passed her ROP and hearing tests and is the wriggliest little baby ever. She's still tiny, but her journey through the NNU has been relatively uneventful. Fingers crossed your little one's journey will be too.

 

[vermeil]

Hello Auntbug!

30 weeks, you're set! 800g is a GREAT weight! You'll both be just fine! *hugs* and I mean that, I'm not just fibbing!

I know from experience this is VERY hard to visualize right now but...take a deep breath - everything will be fine. 30 weeks is a great gestation already.

By 27-28 weeks the odds are already very good. Your little girl will most likely need a bit of help breathing (CPAP most likely) and might have jaundice, a fragile immune system at first (so perhaps a small infection or two, all preemies get them), regular desats at first and other minor issues. All very routine, easily treatable stuff. By 28 weeks the brain has finished developping so you've past that big milestone. The intestines, fragile in the earlier preemies (24 weeks or so) and a source of concern, are mature. The lungs are completing maturation also. All is looking good

And you know what's incredible about these little guys? even that small their bodies are already amazing - In IUGR scenarios most of the bloodflow is directed to the important organs, brain, heart etc to keep them in top shape. The rest will easily catch up after once they are born! Pretty neat huh.

My own little guy was also a severe case of IUGR detected at 24 weeks or so. By 27 weeks he hadn't gained ANY weight in a month. He was in the bottom 2 percentile. He was soooo tiny even the best ultrasound equipment couldn't estimate his weight. Doctors decided to deliver him while he was still strong. He weighed a measly 570g. In my NICU section 800g was considered a great weight! So of course I might have a different perspective than the mom of a 35 weeker but from what I other IUGR cases I saw during those long weeks, you should be fine.

We had every single complication that exists - no really, you name it, my little guy went through it! I won't list them all (don't want to scare you ) but what saved us is again though tiny his brain was developped by then. If you want more details just pm me and I can give you more info on any topic you want. When you feel brave you can click on the link in my sig for our story and pictures. There's a picture of my son at 830g, and one around 30 weeks. You'll see he already looks good at that weight! You can see pictures of my little guy now - a thriving, happy 13 month old that is the envy of every nurse and therapist we see now (they all say he's just the cutest thing ever, I'm sure they're objective too *cough yeah right *cough* )

Here's a little secret.. don't tell anyone... doctors tend to give pessimistic news. I saw this time and time again in preemie meetings, from talking to other parents. Many others were given just horrible odds like us and their babies turned out just fine. Why do they do that? I'm still wondering that. To prepare us I guess? So we're informed? At one point I told my doctor "PLEASE just do NOT use the word MIGHT any more. I just want to know how he is NOW not the countless other problems he MIGHT develop in the future" Of course not all preemie stories have happy endings but really, here in Canada at least, they save over 85% of preemies. Considering they try to save them from 23 weeks on, that's VERY good! And if you dig a bit more on IUGR in the vast majority of cases it doesn't lead to additional issues later on in life; babies do eventually gain all the weight and catch up

I certainly don't want to minimize your pain and fear. From having been there this is very, very hard and very scary. I was a nervous wreck for months and went into full survival mode. There will be ups and downs, good days and bad days. What counts is slowly over time you'll look back on this experience and wonder how the heck you managed to pull through - but you WILL, one day at a time!

If you can ask to visit the NICU, many people find it helps a lot. The staff there is usually great and fully competent; your little girl will be in good hands

 

[AuntBug]

Poorah and Vermeil - thank you so much for sharing your encouragement and experiences. I've actually done a bit better since Monday, I'm sure the waiting is much like the NICU, ups and downs. Scan days seem harder.

I've done as much research as I can on NICU, what complications to expect, what the equipment looks like, etc. My DH has been wonderfully supportive, I don't lift a finger at home. But the NICU images freak him out a bit, get him spinning on the "what ifs", so he doesntwant to tour until we're there. We did an online tour and I think that's about all he can take right now.

Our NICU is a level 4 right next to L&D, so I think I'll take a peak when they hospitalize me before they take her.

Again, everyone here is so wonderful, not sure what I'd do without bnb. I've never really taken the easy path anywhere in my life, but it always leads me to a better destination. Thanks again.

 

[vermeil]

Oof glad to hear you are feeling a little bit better Auntbug! And that your DH is taking such good care of you

Since you won`t be visiting the NICU just yet, here`s is the next best thing, a great website that helps demystify the equipment, what to expect etc. Really all other preemies moms say the same thing - the equipment is indeed intimidating at first. Don`t be shy to ask the nurses what everything is. But soon you get so used to it you just don`t see or hear it anymore, and you can read and understand the screens yourself. Most of it is quite benign - temperature readings, humidity levels in the isolette, oxygen level monitor, etc.

I just cannot recommend this site enough - it was a HUGE help to me!

https://www.marchofdimes.com/prematurity/index_about.asp

Here`s a wonderful, illustrated interactive guide to preemies - very helpful!

For Families: Understanding Your Premature Infant: An Interactive Program for Parents
https://www.milesforbabies.org/prematurity/index_families_66216.asp

the section NICU has GREAT tips for us parents
https://www.milesforbabies.org/index_nicu.asp

 

[AuntBug]

Thanks so much Vermeil! Ivelooked at the March of Dimes site before, but the Miles for Babies looks like great info! I've been nose deep in research, doing what I can to prepare.

I had my nst today, and she looked great. She was reactive already, and I'm not quite 31 weeks. Also had my first steroid shot, get my second today.

Thanks again for all of your help!

 

[confused87com]

i was diagnosed with the same as u at 28 weeks, we held on til 30 weeks and i had a c section. My little boy was 1175g but predicted less on the scans. there is nothing wrong with him. It was a long journey but 8 weeks later he came home. He is a perect baby, just small. Gettin to 30 weeks is really good, they stand sucha better chance then

 

[AuntBug]

Thanks so much! Glad your LO is going well! We're 31 tomorrow with a scan on Monday and a round of steroids down, so I'm feeling as ready as I can be now!

 

[Fiestagal]

My son was born at 34+6 weighing 1.24kg. Despite being small the older gestation really did go in his favour. He needed very little intervention, just an incubator for a few days for warmth and some iv lines for nutritional fluids. He started feeding from 3 days of age and after that was just a 'feeder and grower'. Our doctors were great and positive and monitored us closely.

He is doing great, he'll be two at the end of August and is just a cheeky monkey!

I hope your little one stays put a little long (but 31 weeks is great) and has a short journey in neonatal.

 

[lil-star]

Aw you poor thing it's such a scary time Eli was born at 30weeks weighing 895g. He was diagnosed with iugr at 17 weeks. Fast forward nearly ten months & he flying it. When he came out all he had to do was grow, because even though they are low birth weight they wouldn't have the problems of a 26 weeker like breathing, rop etc. He did get a few infections but was home on his due date. He has problems bottle feeding & is still small at 12.8lb I dont know if it's because he has iugr or bad feeding. Best of luck, these babies are fighters x