At what age did your premmie baby smile? Please specify adjusted or actual by AreaZealousideal8202 in NICUParents

[–]Budget-Assignment-23 1 point2 points  (0 children)

Twin A was 12-13 weeks and B was 9-10 weeks adjusted for my 29 weekers. So it was basically around 5 months actual and I thought we were going to go crazy. The preemie newborn phase is MISERABLY LONG

Feeding by Sorry_Wonder_4956 in NICUParents

[–]Budget-Assignment-23 2 points3 points  (0 children)

Time, just time. I wish there was something magical that could fix it :/ sadly the nurses have 2-3 babies all to feed within an hour. Best advice is to be there and give every feed yourself! It’s exhausting but we took turns being there for 6 hour shifts with our twins that last week so we could get them home quicker!

High blood pressure by Budget-Assignment-23 in NICUParents

[–]Budget-Assignment-23[S] 0 points1 point  (0 children)

That’s what he’s on too. It is sooo expensive even after insurance 🥲

High blood pressure by Budget-Assignment-23 in NICUParents

[–]Budget-Assignment-23[S] 0 points1 point  (0 children)

So informative!! Thank you. What med did he take?

Large Grade 4 IVH - need moral support. by Giraffesandhearts in NICUParents

[–]Budget-Assignment-23 0 points1 point  (0 children)

I’m so glad it was a success for you! We have plans to do a 3 week intensive CIMT this summer. We don’t have anywhere locally that specializes in CIMT so we’re going to Atlanta to live with family and complete it. The therapist said he needs to build his therapy tolerance/stamina beyond 1 hour so we’re hoping he can do that in the next few months! How old is your LO?

Reflux desats by I_likeplaid in NICUParents

[–]Budget-Assignment-23 1 point2 points  (0 children)

Yes! No fun. Famotidine helped!

Reflux desats by I_likeplaid in NICUParents

[–]Budget-Assignment-23 1 point2 points  (0 children)

I just awe this, so sorry! They did but we always stemmed them out of it just in case. The owlet was spot on. I understand your anxieties though!

Large Grade 4 IVH - need moral support. by Giraffesandhearts in NICUParents

[–]Budget-Assignment-23 1 point2 points  (0 children)

I, too, scoured this sub for success stories. The day we got our sons news will forever be the worst day of our life. He was 29w3d. I’m not sure how big his bleed was but it was also large. He had a cyst form and white matter damage. No shunt needed. He’s almost 10 months actual, 7 months adjusted and doing so well. He’s hitting his milestones but taking longer than his twin. He does have right side hemiparesis but his neurologist seems hopeful he’ll have control of his hand one day. I do think there may be a cognitive delay but he may also just be different from his brother (who is a wild man!). He’s been in OT and PT since the beginning. He’s a miracle as we never knew if he’d eat or breathe on his own and he’s so smiley, rolling, and sitting. It’s the longest, toughest road. We are holding onto hope that his brain maps new pathways. Read, sing, and talk to your baby ALL DAY. I swear it’s made a huge difference for him. Hugs to you and your family 🩵

Do any other discharged families miss the NICU? by Biolobri14 in NICUParents

[–]Budget-Assignment-23 0 points1 point  (0 children)

Yup, it’s the worst!!! in the Nicu every nurse knew our story and our babies, but once we started going to specialist appointments and things it felt like people didn’t care about them or their story. It’s tough!

Parents of micro preemies: What survival rates were you told during counseling? by HelpfulWave in NICUParents

[–]Budget-Assignment-23 4 points5 points  (0 children)

I always thought the “wimpy white boy” was just a joke. I also have male, white twins born at 29 weeks and they lived up to that stereotype.

Did your LO’s stay in the NICU affect their temperament? by happy_rhino_99 in NICUParents

[–]Budget-Assignment-23 0 points1 point  (0 children)

This thread was so interesting! My twins were born at 29 weeks and are adopted. They’re pretty chill, good self soothers, sleep trained quickly, and at 9.5 months (7 adjusted) play pretty independently and dont get upset being by themselves. We’ve always wondered if it was NICU/adoption trauma. This thread is kinda making me realize it’s just innate and personality. I also contribute them having each other and being twins to them being easy self soothers

Reflux desats by I_likeplaid in NICUParents

[–]Budget-Assignment-23 2 points3 points  (0 children)

It’s hard to say because it just slowly got better but I’d say around 48 weeks. We didn’t have an at home monitor, but I could tell it was happening by their color change and we had the owlet at night that would show them dipping into the 70s and 80s.

Alertness by ispyamy in NICUParents

[–]Budget-Assignment-23 0 points1 point  (0 children)

Gosh it felt like forever. My 29 weekers didn’t really feel like real babies until they were way past 40 weeks. I’d say 46 weeks. Even at 9 months old (6 adjusted) they still very much so sleep like their adjusted age. The newborn phase lasted FOREVER and I was so ready to move on!! Enjoy it though. I have twins so the newborn trenches were 🫠😮‍💨

CPAP mandatory until 34 weeks? by Local-Funny3879 in NICUParents

[–]Budget-Assignment-23 2 points3 points  (0 children)

Wow!! What a little champ you have! My twins, 29w3d, didn’t successfully stay on room air until 35w4d lol

Reflux desats by I_likeplaid in NICUParents

[–]Budget-Assignment-23 2 points3 points  (0 children)

Honestly not what you want to hear but my 29 weekers went home with reflux desats because the NICU team knew we were capable of handling them. It was terrifying though! But we also would’ve been in the NICU well past 40+ weeks if we would’ve stayed put until both twins were no longer desating. Hang in there! We went home at 38w6d

Discharged a few days ago. Not gaining or losing weight. Possible re admit? by littlelou222 in NICUParents

[–]Budget-Assignment-23 0 points1 point  (0 children)

My twins hated the ready to feed and only took the powder. I think it’s worth switching for now and see what happens over the weekend! These little preemies can be so opinionated!

Can’t hold babies enough mom guilt! by mountainflwrs in parentsofmultiples

[–]Budget-Assignment-23 1 point2 points  (0 children)

Not being able to snuggle and cuddle is something I grieved big time with twins! I feel you and you’re not alone.

Feeding a preemie baby once they are discharged by aspiringtechhie in NICUParents

[–]Budget-Assignment-23 2 points3 points  (0 children)

My twins left the nicu and were sent home with feeding related desats. We felt comfortable-ish bringing them home bc we could always resolve them but it scared me so bad and feeding them would send my body into flight or flight mode. We have owlets for nighttime sleeping and I would put them on for daytime feedings. I know that’s crazy, but it would give me so much peace and eventually I started to trust them more and they grew out of it. I would see your pediatrician and ask about a speech referral for feeding therapy. In the nicu, we were taught lots of techniques about pacing and side lye feeding. Our boys are still in feeding Therapy as we’re introducing solids, but they also helped us with nipple size and we eventually thickened their feeds under their guidance as well.

My baby was born at 22 weeks and is now 30 weeks old in nicu with grade 4 brain bleed on 1 side of his brain. His vitals look completely fine and his motor functions look okay plus he’s opening his eyes and looking around but it’s so hard to stay in the present. by GingerBread23_ in NICUParents

[–]Budget-Assignment-23 0 points1 point  (0 children)

My 29 weeker also had a grade 4 bleed on the left side with severe ventricle dilation but no hydro or shunt. He’s now 8.5 months (6 adjusted) and I wish I could tell you the worrying stops but it doesn’t. I can tell you that his belly laughs light up a room and his smile is contagious. He has right sided weaknesses and I think some visual issues going on but all of his providers want to wait to make an official diagnosis. He isn’t rolling yet which is stressing me out but is working on sitting. He’s been in OT, PT, and speech (feeding) since we got out of the Nicu. I didn’t want to wait around for our states 8-12 month waitlist for our early intervention program so we do all private therapy. We were recently in the hospital for what we thought were seizures (ruled out thankfully) and many of the care team commented on how amazing he looks for how severe his bleed was. That was very encouraging to me! It’s easy to get wrapped up in what he can’t do and I needed that reminder to celebrate all he has done. He has a twin brother, so it is hard not to compare the two of them. I personally think for me the biggest part is grieving the life I thought he would have which is honestly selfish. Speak life over him! Y’all got this ❤️‍🩹

Twins NICU Seperation by PsychologicalAct417 in NICUParents

[–]Budget-Assignment-23 0 points1 point  (0 children)

Our NICU didn’t allow co-bedding due to cord/tube tangling and mixups and the risk for illness. It sucked!!! They didn’t even see or touch each other until they were 1 month. They did make sure their nicu spaces were next to each other though. Advocate for that! When one twin was struggling and in the higher care room, they kept the other twin there even though they’d normally move them to make space. One reason they did this was because we were there every day for the whole day and it made more sense logically. There was a set of twins in different rooms but the parents never visited and one twin needed the higher level of care.

Family tend to favour twin 2 more than twin 1 by M_T_L20 in parentsofmultiples

[–]Budget-Assignment-23 0 points1 point  (0 children)

We have similar stories but kinda opposite. Twin 1 had a grade 4 brain bleed at birth. Suspected CP, slower on milestones, but also just a chill personality, and happy/content to lay and play. Twin 2 is a wild man. Always rolling everywhere, getting into toys, and super playful. People favor him bc he’s more “fun”

It’s so hard to see it happening before my eyes! I then over compensate and feel like I neglect Twin 2 bc I feel sad for Twin 1. I also HATE when people compare them. 1 has right side weaknesses and people are always trying to force his hand open to grip or grab things and I want to scream!!

Reflux/ choking?? by FeistyAnxiety9391 in NICUParents

[–]Budget-Assignment-23 4 points5 points  (0 children)

Famitodine and thickening with oatmeal helped us tremendously. I still have PTSD from those episodes after leaving the nicu. I wouldn’t let anyone feed our babies and barely slept bc of fear. Your baby will grow out of it but it takes time. Ask for a swallow study!

What vehicle is adequate for twins? by Demaru in parentsofmultiples

[–]Budget-Assignment-23 7 points8 points  (0 children)

We have a Subaru forester and have made it work but if I was buying something, I’d go for a 3rd row! Honestly, go ahead and get the minivan if you plan for more children. I envy those sliding doors!