Post NICU question

TheDairyQueenx3

Hello all! I will do a quick intro I gave birth to my twin boys vaginally 11/13/13 they were 33 weeks and 6 days. They spent 14 days in the NICU and A has overall have done really well and we haven't really had any bumps in the road B totally different story (well except for this stupid synergist ... Probably not spelling that right but insurance has us jumping threw hoops and they still refuse to cover it) anyhow my question is twin A never behaved like a preemie he's hitting milestones the same as a term baby would however B is still on his apnea monitor and while he is making progress he isn't even hitting milestones at his adjusted age. He's favoring his right side (unequal movements still like a newborn) doesn't want to focus or make eye contact, no social smiles just the typical newborn ones, won't pick his head up, isn't attempting to roll over, etc. where as twin A is the complete opposite. I have taken him to see an OT and she hasn't really delt with preemies or twins. We live in a remote area so the next closest is about an hour and 45 minute drive. So my question is how long did it take your preemie to catch up. Did it take them longer than the adjusted age? At what point do I start to worry? Thanks everyone!

JoJoGee

If I am doing my math correctly, your sons are 3 weeks adjusted.  That is still very early to be doing anything besides sleeping, eating and pooping.  Technically, your son is still a newborn.  As previous posters have said, always go by the adjusted milestones.  Here is the CDC's milestone list to help you know what is typical... https://www.cdc.gov/ncbddd/childdevelopment/positiveparenting/infants.html

I also know it is hard not to worry.  I worried and I nearly killed myself doing it.  Definitely consult with your pediatrician anytime you have a concern.  And, if it would help you, contact early intervention.  We did.  Our DD qualified because simply because she was a preemie (in OH they do not account for prematurity on EI evaluations, so my DD was always 3 months behind).  And, I am so glad we took the help, because our DD did end up with motor delays (and a CP diagnosis).  But, that is our story.  That doesn't mean it will be your story.  Again, he is still only 3 weeks adjusted.

They say it takes a preemie 2 years to fully catch up.  If you feel he is still behind at 4/5/6 months, I would definitely have an evaluation.  That's when I really knew for sure that something was not right.

TheDairyQueenx3

Thank you everyone. This adjusted age really throws me off because the other twin acts like full term. What exactly is EI and how would I I about getting him evaluated? We are so far from any cities and his pedi hasn't said anything about it to us. They just referred him to the OT simply because he is so small and has a weak suck and a hard time staying awake. Also he only ever wants to move his left side. I'm just trying to get him all the help he can so he isn't lagging so fat behind his brother.

JoJoGee

EI stands for Early Intervention.  Just google Early Intervention, and your county to get their number and information.  Then, call them up and request a evaluation.

They'll come out and evaluate your son.  Then, based on their evaluation they will (or they won't) recommend services.  Together, you'll set goals, and a schedule.  Then, the therapist will come out and teach you exercises to do with your child.  

I know it sounds like a lot right now, but they'll walk you through every step.

rslhmg

33 and 6, does that put your due date as Jan 1st? Trying to figure up adjusted age in my head, I want to say somewhere between 2-3 wks adjusted (not sure when your due date was to figure it out easily). They would still be in the newborn phase, so I would try not to worry too much right now. Also, from what I've learned being here, and having a preemie, all preemies are different (even twins). It never hurts to have EI do an eval though, we had one for DD early on. They can tell you if your lo is actually behind or not for adjusted age, and if he is get you set up with the right therapies to get him on track. I think some states will automatically qualify for services just based on prematurity, not sure how yours will work, ours had to have an actual delay to qualify for more than evals every 6 months (if we felt they were necessary). We actually got the contact info for our states EI program from our local health department, so that's an option for getting the info as well.

TheDairyQueenx3

Sorry I should of stated the adjusted age! They are 3 weeks and 2 days. It's just so strange to me that the one twin is doing things a 9 week old is and the other still isn't even at the newborn stage. Both my oldest son and my oldest twin have been "ahead of the game" so to speak and loved to be held and snuggled where as Colton could care less. And factoring in the unequal movements, well it's just so different to me. I contacted the Early on people today and will be out Tuesday for an evaluation with a nurse, caseworker, speech, OT to get us the help he may need because according to our pedi he is not on track when I talked to the office before the EI case worker. Its just so so hard not to compare. And he was IUGR so it's really not fair because he was half the size of Cayden and a 1/4 the size of my oldest son Wyatt. He is still 2 pounds behind the older twin. I just want to get them on an equal level so he's not constantly playing catch up. And my pedi really compares them constantly it's frustrating.

[Deleted User]

It sounds like you should stop comparing them, no matter how hard it is. You will only drive yourself crazy. Each one of your sons is an individual and will progress at their own rate. In twins, it's not uncommon for one to be ahead of the other. They are also so young so try to stay calm and take it day by day. I'm glad you got ei involved, you'll be able to speak to them and hopefully it will ease your worrying. Good luck.

JoJoGee

mellissalynay90 said:

Its just so so hard not to compare. And he was IUGR so it's really not fair because he was half the size of Cayden and a 1/4 the size of my oldest son Wyatt. He is still 2 pounds behind the older twin. I just want to get them on an equal level so he's not constantly playing catch up. And my pedi really compares them constantly it's frustrating.

It's great that you've contacted EI.  They'll be a great resource for you.  I'll echo what everyone else is saying - I know it is hard, but do your best not to compare them.  In the long run, comparing not only hurts you, but it will hurt them as well.  If you need to compare, then compare how far along your son is today, to how he was a month ago (as the months go by, and you can look back several months, this will get easier).  And, if your pedi can't stop comparing them, then maybe it is time for a new pedi.

Now, I'm going to say something that you may not be ready to hear.  So, feel free to stop reading now... I'll preface this by saying I only know what you have written in this post (Son favors right side, IUGR, late term preemie, and prone to apnea)... It is quite possible that with a little therapy, your son will catch up to his older brother.  But, it is also possible that he will always be behind his brother.  It is even possible, your son will always be behind his peers.  You may just want to consider that (and know that it's not all bad - in fact, most of it is quite wonderful.  It is all about perspective).

GL!

LucyRicardo3

Glad you contacted EI.
My twins just started speech therapy two weeks ago through our state's EI (Georgia) and I am so stinking relieved and excited.
Hoping you get answers for your concerns and in the long run, any help that your LO's may need!