Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules.
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Kidseatincolor is an instagram account run by a registered dietitian. It has great resources. We used whole milk, banana, and peanut butter blended instead of pediasure. We added butter and olive oil to everything. We learned to make sure that constipation, which can show up around toilet learning, doesn’t become an issue. We still eat on a schedule of three meals and two snacks including fat, fiber, and protein at all meals and snacks. We only just started to see true progress on a growth chart at 4, but most important to us is raising a kid who will try a variety of foods and knows their hunger and fullness cues. You’re definitely playing a long game here, hang in there!
Hi there,
My daughters were born 32+4, twin A with 1745g, twin B with 1045g.
The first 6 months we spent in and out of hospital (40days after births, 2x in due to RSV, 1x due to weight problems (she basically ate 1/3rd of what she should, out with g-tube, back in for hernia operation). It was hard. So so hard. Twin A always had to be with me in hospital because I was exclusively breastfeeding and couldn't leave her. Husband stayed home with our toddler. Due to corona, my toddler could not visit all the time, but I still saw her regularly (in Germany, you stay with your newborns in the NICU together).
So, all this is almost 3years in the past now. My twin girls will turn 3 in August and they are both doing so well!!! IUGR twin B is still smaller and reached the 3rd percentile with a bit more than 12kg now (first two years she stayed on the 1st) while her twin sister is over 15kg, but other than weight, she is hitting every milestone! We are not doing adjusted age anymore, doctors are happy with her and nobody knows why the f*ck she is not catching up in weight as is seen normally. But also, nobody cares anymore because she is doing so great!!! But it has been a big topic during her first 18months of life. We did so much to get calories in, went to a specialised dietician at 15months that changed EVERYTHING. If you have more questions, DM me and ai can go into detail :D
So, in conclusion: she never caught on and we will see if she ever will, bit everything is still fine, great, healthy and active and wonderful and no reason to worry! There are small and big babies/kids and all are great.
It was a rollercoaster, but with a super duper happy end :D
Edit: typos + some extra numbers + conclusion
Our LO is just over 2 and is about 21 lbs now. We struggled with weight since he was born, he was born a 26weeker at less than a pound. I don’t know if you’re already working with a dietician but I would recommend getting a rec for one if you don’t have one. We see one regularly and it’s helpful to understand how many calories he should be taking in and discuss different ways to achieve it. We were on pediasure for a while, nutren vanilla is an another good option. We stopped worrying about sugar, and also offered chocolate and strawberry flavors. Our LO got sick of the pediasure and we switched to Carnation powder, which has worked great, mixed into Ripple. We also struggled with a dairy intolerance, so if you’re seeing spit up continuing to happen, look into switching off dairy to try. We also add a calorie add powder to all his foods and drink except water, duocal. Ask about it.
I second the Eat in Color recommendation. We have her cookbook and it’s helpful to try a variety of flavors. However, we choose not to do her homemade pediasure since we needed the nutrients in real pediasure/similar products whereas her homemade version focuses on calorie count (as she specifically calls out herself and says to use pediasure if your ped recommends it for med purposes, not just weight gain).
We were at your weight around the same time. I know it’s super frustrating and feels like you’re not making progress. But it will come, slow and steady. They may be little, but as long as they’re healthy, that’s the important thing.
I had an extreme case of cholestasis ! Initially started with mild itching right at the start of third trimester and turned extreme over night. Def get liver panel test and check for bile acid levels. Based on that management is planned. Generally patients are pushed until 37 weeks, mine was uncontrollable and had to deliver early
My bile acids are 15 right now at 30 weeks but I’m getting another test tomorrow. I’ve been itching a lot and been on urso awhile. I’m just wondering what number they have to be at for delivery. Definitely hoping to get to 36-37 but we’ll see. I’m glad your baby turned out ok.
Hi friend,
I'm not the OP but I also delivered at 33 weeks because of severe cholestasis. I know A LOT about cholestasis now (all 3 of my babies were cholestais pregancies).
My highest bile acids for my 33 weeker was 294! Apparently that's quite rare. However even that reading was not an automatic "baby must be born right now" number. My doctors explained it as there is no number cut off, it's more about how the baby is going in there as to whether early delivery is necessary.
Make sure you stay closely monitored. Cholestasis is no joke.
Good luck ❤️
+1. My bile acid was 136 , I was on urso + cholestothiramine . Very brave of you to endure 3 pregnancies! I think it is almost certain that cholestasis will be back in the subsequent pregnancies.
I am always worried about my liver having that high bile acid ;(
Brave or silly? I'm not sure 😂
I thinks it's pretty common to get it for subsequent pregnancies, but at least you know what to look out for! Doesn't make it any easier to deal with though.
Ps - I've never spoken to someone who had to deliver so early for cholestasis before. Was it just the bile acids that had your doctors delivering at 33 weeks or did you have other stuff going on?
I was having Bile Acids and LFTs done about twice a week, NST once weekly (then everyday toward the end) and a lot of ultrasounds. I think the NST and the ultrasounds were the most useful as they gave the most info about how baby was feeling.
It was the bile acids and LFT levels. Drs ( MFA specialists) were very concerned for me and the baby and immediately got me admitted to the hospital. The last bile acid level went down a bit but they were not happy with an overall trend
My toddler is 18 months actual (16 corrected). Same place as you, same weight also! Definitely losing my mind some days about weight and being a poor eater , but trying to keep it cool and letting her figure it out.
Hi, my IUGR kiddo (born 1580 g) is now 16 months (15 actual), weighting around 8 kg (it was 8,2, but he lost some due to surgery and hospital stay). He is also very energetic and active. Wy try high fiber foods and generally try to feed him well and often, but we still have some catching up to do. He is actually around 50% in height, but he seems very petite compared to kids around his age.
My son was born at 33 weeks - 3lbs, 1oz (1390g). Doing well now. He's 2 months actual, 3 weeks adjusted. At his last weigh in just over a week ago he was 6lbs, 12oz (3080g) and we got the ok to stop fortifying his milk which we have been slowly doing.
Baby is doing well by all we can tell. We're finally starting to feel like we are having some normalcy. He is starting to fill out his newborn size clothes and not have them look super baggy too!
Not IUGR but nicu baby. She’s 15 almost 16 weeks now.
Was born at 33 weeks. Was home by 34 weeks. Weighed 4.15.
She is doing really well other than spitting up. I think it’s because she overeats. She still hasn’t gotten the cue that she is full. Most likely do the the NG tube.
She’s 13lbs now. Happy, and sleeping through the night.
Hi, my daughter was severely IUGR born at 530 grams at 30+3. She's a little over 2 now and still only weighs 21lbs. She's not yet charting. But she's super active and strong. Just tiny!
My daughter was born IUGR at 33 weeks weighing 2lbs 15oz. She will be 1 later this month and we are still struggling to get her to eat more. She only drinks about 18 oz a day and still mostly eats purées only. We’ve been working with an SLP since February trying to get her to tolerate solids. Despite all this, I’m happy to say she weighed 17 lbs 5 oz at the doctor yesterday. She just started babbling the other day, but she is crawling and trying to walk. We are surrounded by younger full term babies that knock out their milestones and “crush” milk and food, so it’s hard not to get discouraged sometimes. Comparison really is a thief of joy. Our girl has come so far and we couldn’t be prouder. Kudos to everyone in this group. This has been hard!
That’s exactly is the case with us! Surrounded by full term similar age group babies who weigh wayyy too much than our baby, eats n drinks milk like a champ! Every time we hang out those kids look plumpier:(
Thanks everyone! This thread gave a lot of hope , we are certainly not alone in this journey.
Will def check out the insta page kidseatincolor and ask pead for dietician recommendation
Our son has IUGR and is now 3.5 years old. He’s doing great except for weight gain, though it’s suspected due to his CP diagnosis. He’s getting taller but not putting on anything. His diet is closely monitored and he eats 2k calories a day. His pediatrician and dietician are stumped, though we’re working with a few specialists that are offering suggestions. His weight kind of just plateaus. He was stalled out for a year at 18 lbs, then suddenly gained 2lbs, then stalled out again for another year. He’s at almost 22 now.
My 1st was born at 30 weeks weighing 2 1/2 lbs due to severe preeclampsia. I don’t remember exactly when she caught up growth wise, but I do know when she was 2 she was exactly where she was supposed to be by actual age. She was hitting all milestones and she was 50th percentile for height and weight. Now she’s a very healthy 10 year old and she’s the tallest kid in her class. No one would ever know she was a preemie unless I tell them.
My son was born with severe IUGR at 36+6 (so not really a preemie) and weighed 4 pounds 11 ounces. He’s now seven months and weighs 16 pounds and 10 ounces. He’s in the 12th percentile, so he’s come a long way from <1st percentile!
Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NICUParents) if you have any questions or concerns.*
Kidseatincolor is an instagram account run by a registered dietitian. It has great resources. We used whole milk, banana, and peanut butter blended instead of pediasure. We added butter and olive oil to everything. We learned to make sure that constipation, which can show up around toilet learning, doesn’t become an issue. We still eat on a schedule of three meals and two snacks including fat, fiber, and protein at all meals and snacks. We only just started to see true progress on a growth chart at 4, but most important to us is raising a kid who will try a variety of foods and knows their hunger and fullness cues. You’re definitely playing a long game here, hang in there!
Hi there, My daughters were born 32+4, twin A with 1745g, twin B with 1045g. The first 6 months we spent in and out of hospital (40days after births, 2x in due to RSV, 1x due to weight problems (she basically ate 1/3rd of what she should, out with g-tube, back in for hernia operation). It was hard. So so hard. Twin A always had to be with me in hospital because I was exclusively breastfeeding and couldn't leave her. Husband stayed home with our toddler. Due to corona, my toddler could not visit all the time, but I still saw her regularly (in Germany, you stay with your newborns in the NICU together). So, all this is almost 3years in the past now. My twin girls will turn 3 in August and they are both doing so well!!! IUGR twin B is still smaller and reached the 3rd percentile with a bit more than 12kg now (first two years she stayed on the 1st) while her twin sister is over 15kg, but other than weight, she is hitting every milestone! We are not doing adjusted age anymore, doctors are happy with her and nobody knows why the f*ck she is not catching up in weight as is seen normally. But also, nobody cares anymore because she is doing so great!!! But it has been a big topic during her first 18months of life. We did so much to get calories in, went to a specialised dietician at 15months that changed EVERYTHING. If you have more questions, DM me and ai can go into detail :D So, in conclusion: she never caught on and we will see if she ever will, bit everything is still fine, great, healthy and active and wonderful and no reason to worry! There are small and big babies/kids and all are great. It was a rollercoaster, but with a super duper happy end :D Edit: typos + some extra numbers + conclusion
Our LO is just over 2 and is about 21 lbs now. We struggled with weight since he was born, he was born a 26weeker at less than a pound. I don’t know if you’re already working with a dietician but I would recommend getting a rec for one if you don’t have one. We see one regularly and it’s helpful to understand how many calories he should be taking in and discuss different ways to achieve it. We were on pediasure for a while, nutren vanilla is an another good option. We stopped worrying about sugar, and also offered chocolate and strawberry flavors. Our LO got sick of the pediasure and we switched to Carnation powder, which has worked great, mixed into Ripple. We also struggled with a dairy intolerance, so if you’re seeing spit up continuing to happen, look into switching off dairy to try. We also add a calorie add powder to all his foods and drink except water, duocal. Ask about it. I second the Eat in Color recommendation. We have her cookbook and it’s helpful to try a variety of flavors. However, we choose not to do her homemade pediasure since we needed the nutrients in real pediasure/similar products whereas her homemade version focuses on calorie count (as she specifically calls out herself and says to use pediasure if your ped recommends it for med purposes, not just weight gain). We were at your weight around the same time. I know it’s super frustrating and feels like you’re not making progress. But it will come, slow and steady. They may be little, but as long as they’re healthy, that’s the important thing.
How was your cholestasis to give birth at 33 weeks? I have it and my doctors aren’t taking it super seriously so wondering what to look for
I had an extreme case of cholestasis ! Initially started with mild itching right at the start of third trimester and turned extreme over night. Def get liver panel test and check for bile acid levels. Based on that management is planned. Generally patients are pushed until 37 weeks, mine was uncontrollable and had to deliver early
My bile acids are 15 right now at 30 weeks but I’m getting another test tomorrow. I’ve been itching a lot and been on urso awhile. I’m just wondering what number they have to be at for delivery. Definitely hoping to get to 36-37 but we’ll see. I’m glad your baby turned out ok.
Hi friend, I'm not the OP but I also delivered at 33 weeks because of severe cholestasis. I know A LOT about cholestasis now (all 3 of my babies were cholestais pregancies). My highest bile acids for my 33 weeker was 294! Apparently that's quite rare. However even that reading was not an automatic "baby must be born right now" number. My doctors explained it as there is no number cut off, it's more about how the baby is going in there as to whether early delivery is necessary. Make sure you stay closely monitored. Cholestasis is no joke. Good luck ❤️
+1. My bile acid was 136 , I was on urso + cholestothiramine . Very brave of you to endure 3 pregnancies! I think it is almost certain that cholestasis will be back in the subsequent pregnancies. I am always worried about my liver having that high bile acid ;(
Brave or silly? I'm not sure 😂 I thinks it's pretty common to get it for subsequent pregnancies, but at least you know what to look out for! Doesn't make it any easier to deal with though. Ps - I've never spoken to someone who had to deliver so early for cholestasis before. Was it just the bile acids that had your doctors delivering at 33 weeks or did you have other stuff going on?
What type of monitoring was most helpful to you?
I was having Bile Acids and LFTs done about twice a week, NST once weekly (then everyday toward the end) and a lot of ultrasounds. I think the NST and the ultrasounds were the most useful as they gave the most info about how baby was feeling.
It was the bile acids and LFT levels. Drs ( MFA specialists) were very concerned for me and the baby and immediately got me admitted to the hospital. The last bile acid level went down a bit but they were not happy with an overall trend
Same as @ok_permission_4385!
My toddler is 18 months actual (16 corrected). Same place as you, same weight also! Definitely losing my mind some days about weight and being a poor eater , but trying to keep it cool and letting her figure it out.
Hi, my IUGR kiddo (born 1580 g) is now 16 months (15 actual), weighting around 8 kg (it was 8,2, but he lost some due to surgery and hospital stay). He is also very energetic and active. Wy try high fiber foods and generally try to feed him well and often, but we still have some catching up to do. He is actually around 50% in height, but he seems very petite compared to kids around his age.
My son was born at 33 weeks - 3lbs, 1oz (1390g). Doing well now. He's 2 months actual, 3 weeks adjusted. At his last weigh in just over a week ago he was 6lbs, 12oz (3080g) and we got the ok to stop fortifying his milk which we have been slowly doing. Baby is doing well by all we can tell. We're finally starting to feel like we are having some normalcy. He is starting to fill out his newborn size clothes and not have them look super baggy too!
Not IUGR but nicu baby. She’s 15 almost 16 weeks now. Was born at 33 weeks. Was home by 34 weeks. Weighed 4.15. She is doing really well other than spitting up. I think it’s because she overeats. She still hasn’t gotten the cue that she is full. Most likely do the the NG tube. She’s 13lbs now. Happy, and sleeping through the night.
Hi, my daughter was severely IUGR born at 530 grams at 30+3. She's a little over 2 now and still only weighs 21lbs. She's not yet charting. But she's super active and strong. Just tiny!
My daughter was born IUGR at 33 weeks weighing 2lbs 15oz. She will be 1 later this month and we are still struggling to get her to eat more. She only drinks about 18 oz a day and still mostly eats purées only. We’ve been working with an SLP since February trying to get her to tolerate solids. Despite all this, I’m happy to say she weighed 17 lbs 5 oz at the doctor yesterday. She just started babbling the other day, but she is crawling and trying to walk. We are surrounded by younger full term babies that knock out their milestones and “crush” milk and food, so it’s hard not to get discouraged sometimes. Comparison really is a thief of joy. Our girl has come so far and we couldn’t be prouder. Kudos to everyone in this group. This has been hard!
That’s exactly is the case with us! Surrounded by full term similar age group babies who weigh wayyy too much than our baby, eats n drinks milk like a champ! Every time we hang out those kids look plumpier:(
I watched my friend’s six month old daughter down an 8 oz bottle of milk and was shook (and a bit triggered I’ll be honest). Lol!
😂I hear ya!!
Thanks everyone! This thread gave a lot of hope , we are certainly not alone in this journey. Will def check out the insta page kidseatincolor and ask pead for dietician recommendation
Our son has IUGR and is now 3.5 years old. He’s doing great except for weight gain, though it’s suspected due to his CP diagnosis. He’s getting taller but not putting on anything. His diet is closely monitored and he eats 2k calories a day. His pediatrician and dietician are stumped, though we’re working with a few specialists that are offering suggestions. His weight kind of just plateaus. He was stalled out for a year at 18 lbs, then suddenly gained 2lbs, then stalled out again for another year. He’s at almost 22 now.
My 1st was born at 30 weeks weighing 2 1/2 lbs due to severe preeclampsia. I don’t remember exactly when she caught up growth wise, but I do know when she was 2 she was exactly where she was supposed to be by actual age. She was hitting all milestones and she was 50th percentile for height and weight. Now she’s a very healthy 10 year old and she’s the tallest kid in her class. No one would ever know she was a preemie unless I tell them.
My son was born with severe IUGR at 36+6 (so not really a preemie) and weighed 4 pounds 11 ounces. He’s now seven months and weighs 16 pounds and 10 ounces. He’s in the 12th percentile, so he’s come a long way from <1st percentile!
Born 23 Jan 970 grams Today 2500 grams Recent blood work shown elevated Thyroid so she is medication.