Lurker finally asking about my 26 weekers..

Mahon Baby

Hi all,

I'm new to this board but have been lurking since my twin boys were born back in Aug at 26w2d.  We had a hell of a NICU stay...116 days...but they came home on Christmas day and we've been on a treadmill ever since.

Of course, I'm having panic attacks about what the future holds in regards to delays and permanent preemie issues.  Can anyone who had their baby around 26 weeks share with me what their life has been like?

Neither of our boys had brain bleeds and one had a fairly smooth ride through the NICU.  The one who had the worst time....PDA surgery, long term intubation, 4 infections, numerous transfusions, steroids and actual flat lined....is doing the best!!  Our smooth sailor is the one who is concerning me with no desire to eat and no where near as interactive as his brother.  We're taking him to a neurologist next week out of concern for lack of rooting and low muscle tone.

Thank in advance for sharing your stories with me...I'm really feeling anxiety about our future!

punky917

First of all, congrats on your two little boys! The anxiety you are feeling is completely normal as I am sure other NICU moms will tell you. I definitely felt a lot of it for the first two years of his life. I had a 26 weeker who had a 4 month NICU stay. He had an grade III IVH, ROP, PDA, intubated twice for pneumonia, steroids, Broviac surgery, and a bunch of other "little" things that I am sure I have blocked out.

As rough as it was, he is now 4 years old and doing really well. The only preemie related things he still has are that he doesn't have vision in his right eye (due to the ROP) and he takes Prevacid for acid reflux but it is very minimal. I have to say that he is really smart, verbal, and curious about everything. He is now attending preschool and has lots of friends. He met most milestones at his adjusted ages, but some a little later and that's ok. Every baby will be different.

This board is great for sharing stories and asking questions. Everyone is really helpful. I will keep your little ones in my prayers!

3litttlebirds

Welcome! Congrats on your boys! Hopefully other posters have some stories to share with you that are more similar to your situation....my preemie was an almost 34 weeker, so I don't know what to tell you to expect with your LOs....but I can tell you that anxiety about the future is definitely normal! Good luck!

thishappyhouse

Congrats on having your boys home!  Your feelings are totally normal and justified.  I hope the neurology appt eases your concerns and or gives you an action plan for your baby.

 

Im only a year ahead of you, so I can't offer any long term insight.  My daughter was born at 25 w 0d and is now 15 months old. She dealt with PDA, BPD, Pulmonary Hypertension, Pneumothorax, kidney stones, hydronephrosis, long intubation, ROP and a bunch of other minor stuff over a total of 124 days.   She didnt have any brain bleeds but we had some neurological concerns while in the nicu.  They suspected PVL or something similar, but her MRI came back clear.  She is now  doing really well.  She has been discharged from all of her specialists except nephrology and opthamology.  Developmentally she is pretty much on track for her adjusted age for gross motor skills and closer to her actual age for fine motor. The neurological concerns that they had in the NICU seem to be unfounded and so far she seems to have no neurologic problems.  These babies are quite resilient... I know its hard not to worry but at this age many things are wait and see.  You are doing the right thing by seeking out specialists and therapy.  I am a huge proponent of therapy.  My daughter currently gets 1x week PT and 1x month OT even though she is progressing nicely.

KatFCo

Congratulations on your boys and their homecoming! As PPs have said, it is very normal to be anxious.

My DD was a 23w 6day baby and was in the hospital around the same amount of time as your boys. She had stage 1 ROP, 2 NEC surgeries (1 to open her up and another to put her back together) and the PDA surgery. She came home on oxygen with a monitor.

Until she was 2, we saw a neonatologist regularly for health and developmental checks. These were the most helpful at easing our anxiety because we were able to ask questions of people who see preemies every day--pediatricians are great, but they aren't always prepared for preemie issues.

She had a speech delay, which improved with speech therapy from Help Me Grow and she had occasional OT and PT visits.

Fast forward to today, where she is 5 1/2, in kindergarten and at the top of her class. She has asthma, due to BPD, but that's it. Her scars used to make me sad, but now they serve as a reminder of what a miraculous little fighter she was.

This is a great group of people here. Welcome!

DrRx

Congrats on your little boys! Welcome!

My daughter was born at 26w2d and she will be turning 1 in 1 week!  She was intubated for 3 weeks, then CPAP and nasal cannulas, and came home with oxygen after 83 days in the NICU.  We came home at the end of April and she weaned off the oxygen and was finally off of it in late July.  We came off the apnea monitor at the end of October.  She too had multiple blood transfusions in the NICU due to anemia, and had a PFO (that has since closed on its own), but no brain bleed.  She had Stage 1 ROP (which luckily resolved and never needed surgery or the injections) and has BPD.  

She gets therapy from the Early Intervention now once a week.  She is hitting milestones pretty much on an adjusted schedule, although she might hit things actual.  She is a crawling demon and likes to push her boundaries.  She is a very inquisitive and curious baby, and we have to keep our eye on her closely!

She doesn't have any words yet, but she is very vocal and speaks a lot of gibberish.  She is really getting the hang of drinking from the sippy cup and feeding herself (by picking up things).  She is starting to really dislike baby food in a jar and only wants "real" food (ie, what's on our plates).  

JoJoGee

Some children born at 26w are lucky enough to avoid long term preemie complications.  Mine was not.

DD was born at 26w2d as well.  We spent 123 days in the NICU.  She did not have any brain bleeds or a PDA, but she was hard to extubate.  She came home with a trach, a G-tube, and on Oxygen.  She quickly weaned off of the Oxygen, and then only needed it when she was sick.  She was hospitalized 3 times since her discharge, but she hasn't needed Oxygen in 11 months. 

My DD still can't eat - though she wants too.  She can only handle crumbs of food.  Just one year ago, she wouldn't take anything by mouth and would gag the moment something touched her lips.  So, really she's come a long way.

My DD also has Cerebral Palsy.  When DD turned 1 she wasn't crawling, sitting or rolling so I pushed to have her evaluated for CP.  The MRI revealed she had a PVL.  It also revealed overall grey matter loss (so, obviously she had a brain bleed at some point).  The PVL, along with DD's physical presentation, clenched the CP diagnosis.  The overall grey matter loss indicates that my DD should have an intellectual disability.  But, nothing about my DD's behaviors or interactions would indicate this.  As far as anyone can tell, she is a sharp as a tack.

DD was working with EI since the moment she came home. At 9 months old (6 months adjusted), we added private PT.  At 1 year we added private OT and at 1 year and 3 months we added private Speech.  Then, this past August, we were lucky enough to get DD into a local program specifically designed for children with CP.  Think preschool meets therapy.  DD goes there twice a week for 2.5 hours each time. While there, she recieves integrated therapy provided by a team of specialists (OT, PT, Speech, and a Behavioral Therapist).  We still recieve private Speech therapy for feeding issues and we see EI once a month (just to make sure we remain in the system).  But, we have seen great gains since DD started in this new therapy.

Today, DD is rolling all around the floor. She's sitting up unassisted. She's wheeling around the house in a small wheelchair (think bumbo with wheels), and she 'speaking' through a combination of assistive technology, sign lanuage and actual verbalizations. We are hoping she will be eligible for airway reconstruction (to get her trach removed) this summer.

While we haven't been on this journey long there are two things I've learned so far, and if you don't mind I just thought I'd share them...

(1) It's good to be proactive. But, try not to be too anxious. I was very anxious when DD first came home.  As a result, I became a crazy person. I'd work for hours on end with DD on therapy and then get mad at her (and me) when she fought me. It really was counter productive. Whatever will be, will be, and being anxious won't help one way or another.  Which leads me to my next point...

(2) Whatever will be will be.  If your son does end up with some neurological diagnosis just know that it isn't the end of the world.  Yes, it may mean you'll have to dream a different dream for your son, and you may have to mourn the death of another dream.  But, when it comes down to it, you'll realize that none of us are without our struggles, you'll be granted extra time to see that every little milestone is worth a celebration, and you'll grow to see what is really important in this life.