How is your former 26 weeker doing?

Mahon Baby

I think I may have asked this already but I can't find my post and I forgot.  I feel like I am finally coming out of the fog that I've been in since my twin boys were born at 26w 2d in Aug....yes, Aug!!  They came home in Dec and I've been running on empty ever since.  I think I was more scared and panicked of what the future held once they were home than I ever did while they were in NICU.  Now, after 4 mos being home and adjusted age of 21 weeks, things have become more of a reality and I'm more accepting of all possibilites.  We're very blessed as neither boy had brain bleeds, ROP or came home on monitors.  I admit I'm petrified that at any moment we're going to find out there's an odd we didn't beat and it's going to be a horrible one?  KWIM?

So far one of my boys...the one with the hardest NICU stay (heart surgery, infections, flat lined) and uncertain outcome....is really on target for his adjusted age.  He eats like a champ and so far meeting all expected milestones..babbling, reaching, grabbing, etc.

My other boy is having really, really bad eating issues.  He's holding his own but is at risk for falling off his curve.  We're in therapy so I'm hoping things get better fast.  He's not reaching as much as his brother and babbles every now and then.  We're also going to occupational therapy to help with the reaching and low muscle tone. 

So, I'm just looking for some good stories about where your 26 weekers are at...how old are they now, are they in therapy, did they hit their milestones, how was their NICU stay, etc.  How are you handling it all?

Thanks for your stories...so glad there is somewhere I can go where others can help me when I freak out! LOL

punky917

I had a son at 26 weeks almost 5 years ago (seems just like yesterday). His total NICU stay was 127 days. He had pneumonia twice so he was on the vent for a long time.. Also because of this, he had 2 rounds of steroids which docs warned us might have effects on his learning and behavior in the future. He also had grade III IVH on right side of the brain, stage 3 ROP, and pretty bad acid reflux. One of the attending doctors kept trying to talk us into putting in a G tube. We refused-we just really felt like he would outgrow it.When he came home, he was still on monitors, O2, and a feeding tube. We had to gavage many of his feedings and he would throw  up all the time so I understand feeding problems. He had OT/PT services but more on a consult basis when he first came home so they can keep track of milestones.

Well, he is almost 5 now and he is pretty low on the growth chart, but at least he's on it and we are happy with that! He is very active, healthy, and smart for his age. The IVH resolved itself and he has met every milestone at his adjusted age. He is still on Prevacid for acid reflux-we had him weened off of it completely for a couple of months, but he needed it again after that. His ROP complications eventually led to loss of vision in his right eye. It happened before he was 2 so I feel that he has adjusted to that and doesn't remember what it was like to have 2 eyes. 

When all of this was happening, I just wanted him to grow up fast so I wouldn't have to guess on what the future held for us. Hearing positive stories really helped me get through it all. This board is also very supportive to get through all the rough patches.

jacque_z

My 26 weeker is doing great!  She is now 29 months old.  She's talking, running and eats everything is sight! She was in the NICU for 15 weeks.  Her stay was long due to feeding issues. 

 I can definitely relate to your first paragraph about your anxiety coming home and waiting for something to go wrong.  This pretty much described my first year+ at home.  My PTSD manifested itself in always looking/waiting/fearing something would be wrong with her.  I will say it gets better with time.

 I've blogged about our last 2 years at wearegaylor.blogspot.com  

DrRx

My daughter was born at 26w2da last February and will be 15 months later this week.  She has come a long way in the past year that it is really astounding!

She spent 83 days in the NICU and came home on oxygen, a pulse ox, and an apnea monitor.  We weren't 100% wireless until this past October (apnea monitor overnight, just in case).  She had ROP which resolved on its own.  She gets therapy once a week (EI) and they come to our home.  She is still tiny, barely on the growth chart, but doing well.  

She actually just started walking last night!  She has been stepping for a few weeks, but not too far and not with much balance.  We had a big family dinner at our house and she started stepping a lot more then--going on her own.  Last night, right before going to bed, she decided she was going to walk laps around our kitchen/living room and stand up on her own (without climbing on anything) and continue to walk! DH sent me video today while I was at work with her figuring out how to do this while wearing shoes.  She even picked up a little play ball that we have by squatting and then picking it up!  

She feeds herself solids, although she does still get bottles.  The bottles are because the pedi said she needs to keep getting those calories.  She is a babbling machine but doesn't have any real words yet.  She does know to shake her head "no" when she is done with eating.  She also laughs and grins at us when we tell her "no" when she goes to the Xbox and pushes the button to turn it on.   

We are so thankful for how well she is doing.  At her annual eval with the therapist, she said that she is closing the gap in many areas.  She is about 2 months behind in most categories, which is an improvement from being 3.5 months behind at her last eval at 6 months.