A year later... Extreme IUGR

[naturalsinner]

Hello dear NICU parents,

A year ago, back in 2022 december I posted for the first time in this community.

https://www.reddit.com/r/NICUParents/comments/zofb2s/going_to_be_a_nicu_mom_in_days

It is finally time for me to post an update.My baby boy was born a few days after the original post, on 21st of December.I had 3 weeks to prepare mentally for him being a micro preemie and all, but oh god, nothing could prepare me for seeing my baby for the first time. He was soooo tiny, 490 gramms and 26 cm.... I just could not stop sobbing, never saw a baby so fragile.To our luck, the hospital we were in had 0-24 visit for parents and we could start skin to skin on 2nd day after he was born. He needed pulmonary surfactant and was on nCPAP, sometimes on Duopap at first, but by the time of release he was breathing fine and never had any issues ever since.

We spent 105 days in the hospital, even though we never had any major issues, but he is a slow gainer and still does not like to eat that much. (although he is eating solids without any issues, but really hates the formulas...)

He is truly a miracle baby, always happy, always smiling and just very content with life.He was an extreme symmetrical IUGR baby, which is very rare without any genetic condition.His weight is still off the charts, only 6 kgs at the age of 1 year, but his height and head circumference are in the normal range for his corrected age.

I wish strenght and hope to all of the NICU parents who are still in the hospitals, these babies are real fighters, trust them!

I wish everyone a very happy and peaceful Christmas season with lots of love.

Now

Then...

 

[rightking]

@naturalsinner This is exactly like my son!! Type 2 IUGR, symmetrical, no genetic abnormalities, 1lb 2oz at birth (33 weeks and four days) 90 days in nicu
At fifteen months he is about 12 pounds. But happy lil dude, fast crawling and babbling and eating. Just small!

 

[naturalsinner]

@rightking Thank you for the reply
It makes my heart a little lighter to know others had similar experiences.
He is very talkative and super fast crawler too

 

[dansonpete]

@naturalsinner Our son was also born at 490 grams! He turned 3 a month ago. He’s never even touched a traditional growth chart, but is still gaining on his own terms.

 

[naturalsinner]

@dansonpete Aww thank you for your reply. Good to hear we are not alone. Even though he is healthy, happy and very bright it still scares me when he decides to have a "fasting day" or two....

 

[blecap1]

@naturalsinner Aww thank you for posting such a nice update! He’s precious! I just had a 530g IUGR boy on 12/6, so I can relate to the fear of having such a tiny fragile baby. I hope we will have a similar story to tell this time next year.

 

[naturalsinner]

@blecap1 Hang in there!
Do as much skin to skin as you can, it really made a huge difference for us!
Sending you and your little one a big virtual hug!
If you ever need someone go vent to or just to chat, feel free to write!
Merry Xmas!

 

[myjammyboy]

@naturalsinner How much skin to skin contact did you do each day?

 

[naturalsinner]

@myjammyboy In the first 30 days it was at least 2 - 3 hrs daily. After that he was stable enough that I could do most of his care and he was on our chest at least 10-12 hrs a day. We took turns with his dad.
It really helped the baby to ease the stress and you can just tell by looking at him how happy and content child he became.

 

[myjammyboy]

@naturalsinner Thanks a lot. We are currently doing 2 hrs a day. Planning to do upto 3 next week. Out boy was born 28+5 and now he is 9 days old.

 

[naturalsinner]

@myjammyboy You are welcome!
I meant it, feel free to write any time if you have questions or just need someone to vent.
Micropreemies are another level of stress, even in NICU.

 

[myjammyboy]

@naturalsinner Thanks a lot. I might send you a message if I have a question.

 

[sabresong]

@naturalsinner Happy bday

 

[naturalsinner]

@sabresong Thank you!
Merry Xmas to you and your loved ones!

 

[psyman]

@naturalsinner I’m so very proud of you both I can’t imagine how challenging of a time 105 days in the NICU was. We had a month in the NICU (34 weeker) and it felt like an eternity. You and your son are incredible. You’re both so strong. Thank you for sharing him with us! You’re doing an amazing job.

 

[naturalsinner]

@psyman Thank you so so much. Your post made me cry like a baby. Indeed it was hard, but in the end it was all worth it.

 

[orangetree334]

@naturalsinner My severe IUGR baby was born a day before your little one. He was 1lb. 13oz. (835 g.) at 32+2. He started off asymmetrical, but even though his head was relatively large, all of his measurements dropprd below the first percentile. His IUGR was a result of him being a twin. He's now longer and heavier than his non-IUGR sister. He's also a happy and active baby. IUGR babies are fighters! Merry Christmas, and happy birthday to your little one!

 

[naturalsinner]

@orangetree334 Thank you for ypur story! Merry Christmas and Happy New Year to you and ypur family!

 

[leesajohnson]

@naturalsinner This is so heartwarming
I'm really glad for this update
I had twins last march, 30w6d, and it's always a joy to see your little ones growing and thriving

 

[rawo]

@naturalsinner I had an IUGR baby (not a micropreemie, though) and I am always so happy to see these updates! There's a lot of talk on the Internet about how if an IUGR baby is going to "catch up" they'll do it in the first 6 months. And while that may be true for some, that timeline can be longer for some babies. He looks like such a happy little guy. You should be so proud of how far you've both come in the last year (and yes, I include you--it's not easy as a parent of NICU baby).

Just a PSA, but if you are ever feeling frustrated with growth, get a referral for feeding therapy--even if just for a sanity check. Our guy has/had dysphagia which added a lot of additional stress and worry about growth during his first year (and what cause our NICU stay to be as long as it was + he went home on an NG tube). This past summer we had him in feeding therapy (just for the eating, not for the liquid swallowing problems but they consider that, too) because he's still so small at 2 years old, but they at least gave us the encouragement that the way he is eating is typical for a toddler and that the amount was fine, too. They were very quick to say they would rather him follow his curve than put on a lot of weight and have issues later in life. They really emphasized making all meals and snacks like "mini meals" (they should all be nutritious but they don't have to be "big") and sticking to a general timeline to enable him to build more hunger between meals. Obviously--this advice is probably not yet suitable for your little one, but it may be more helpful when he's done with bottles/breastfeeding (however you feed). Our guy is definitely picky and not always a big eater, but his appetite has definitely increased a bit in the past six months which is reassuring.

It's probably a growth spurt, lol, but anyway, at 2.5 years old, he's up to the 12th percentile overall now, having come from below 0. I used to get so upset watching how little he'd eat (particularly between 12-24 months) that I would have to excuse myself from the table to save face, and my husband would finish dinner with him alone. This is why we met with the feeding team to help get our expectations in line with reality. I always recommend their support because a baby's growth is so stressful to us parents and it can be hard to know what's right from the Internet alone or the pediatrician who only sees your toddler every 6 months.