5months old, breathing problems

[lilbeanhoping]

Hi ladies,

So my lo is now 5months old, he was born at 35weeks exactly via emcs. spent a week in the nicu with every type of intervention during that time (looking back not to happy With the "after care" think more should have been done, more follow up and probably more time spent in nicu but what's done is done. He was my first and we were just happy to go home) his lungs were premature and he had to be intubated, cpap, o2.

Well now a month ago he got a cold that turned into RSV which landed us in the hospital with him being unable to breathe. He's always been a bit snorty and breathing pattern different then the norm. Then we got out after a week and 2weeks later family came to stay and brought the flu which he caught and yet again went straight to his lungs. That was 2weeks ago it started and he's still struggling with his breathing. We're using a nebulizer with saline to help clear up his lungs, help him breathe. By we're at the point now I think I need to fill his ventalin prescription
He woke up from his nap today freaking out because he was so congested and couldn't breathe properly

Anyone else deal with this?
Do they grow out of it?
Is there anything I should be requesting that should be done, checked out, tests, etc?

It's so hard watching him struggle
And being cold/flu season it's so hard to keep the germs away!

 

[inperfected]

Oh hun, hugs. To be honest, I'd be cooping up at home for a few months until it's much much closer to summer to give those poor lungs a chance to grow and to heal, pick a couple of friends to see if you need to, but try avoid shops and things like that as much as possible. RSV is a nasty for bubs, J was in hospital with it just after his 1st birthday (10 months corrected).

 

[inperfected]

The lungs do increase in efficency as they grow, though may be diagnosed with asthma once older - it's a wait and see game really. J wasn't nearly as bad by far, but struggles with wheezing with all colds.

Hugs!

 

[lilbeanhoping]

I've been really limiting his "indoor" time anywhere other than our home. I've been sticking to outdoor walks which I find the cool air really helps him, and it's easier to keep ppl out of his space that way when I other have him in my carrier or in the stroller.
I'm also making sure any of our friends who we hang out with while outdoors r sickness free as well as their kids.

We've been told if within the year he gets sick 6times (at least) and it goes to his lungs every time he'll get an asthma diagnosis. Well it's happened 2/2 so far, in a month then when he's old enough they'll do the actual "asthma" tests. Not that I think the diagnosis next year will make any difference, we'll treat it the same way so I'm not really sure why they even label it but w.e I guess.

 

[lilbeanhoping]

I should also mention I have a foster daughter who lives here full time and a stepson toddler who lives here part time so keeping germs out of the house is also next to impossible even with our strict washing hands constantly, upon entering the house after bathroom and many times in between!

 

[Stelly]

Aw I'm sorry for your little bubs! My LO caught a viral lung infection (but wasnt RSV) that he was admitted for. We had to do saline nebs at home as well. Just heartbreaking hearing them so congested! He's also been a "snorty" baby as well...

My pediatrician said he's at risk for asthma being intubated,cpap and O2 but she said that its harder to diagnose in preemies since they tend to have lung tissue damage that they need to outgrow initially as well. I hope your little man gets to feeling better!

Side note-have you tried doing saline flushes of his nose? His dr. recommended and it really did help break up the congestion so he could breathe a little easier.

 

[lilbeanhoping]

Aw stelly your lo sounds a lot like mine!

Yep we do the saline up the nose. Helps a bit but unfortunately for him it's mostly all in his lungs, very little is in the upper nose/airway.

I'm going to try to get him into the pediatrician this week. I think he made need ventalin he's been waking up from his naps screaming because he can't breathe properly. So sad cause he likes his sleep and is so tired still....and the nebulizer isn't quick enough I think he needs the ventalin in a chamber to help faster.

 

[Stelly]

aww that makes me sad- definitely been there before.. Glad you got a pediatrician appt in, I know it sucks to have to give them meds- but if they need it, they need it. I hope the ventalin does the trick and gets him breathing easier.

My LO is the same- he is a sleeper! With his lung gunk it just made him sleep even more and have a lot more apnea/bradys.

Sounds like our boys have had a similar start to life! LO was born at 28 weeks EMCS due to severe pre-e, I think all the respiratory support helps but also just tears up their little lungs initially, double edged sword.

 

[lilbeanhoping]

Yea it is sad.
Well I don't have an appointment yet but I'm going to try to get in, if not with his ped then our family doc.

How much is your lo sleeping?
Only in the last 2.5mnths has mine started to really be awake more. Up until 3-3.5mnths his longest period awake was 45min, maybe an hour, then back to sleep, and sleeping 9-12hrs a night too.
Now he sleeps 12hrs at night but has wakeful periods for 1.5-2hrs during the day before he naps again.

 

[lilbeanhoping]

Where r u guys from Stelly? We live in BC, Canada

 

[Stelly]

He is still sleeping the majority of the time. He really is only awake for a "need". He wakes up every 1.5-2 hours to eat, he BF for about 20min, then typically falls asleep on the boob. The longest times he's been awake was when he had really bad gas/constipation so he was up for like 1.5 hours. He still doesn't like sleeping alone, so we cosleep.

I live in Alaska

 

[lilbeanhoping]

Oh Kool! We're close-ish then lol.
It's weird being opposite then other parents hey? Everyone complaining about lack of sleep and were like "omg they're awake yay!" I know with everyone I know that's how it was. And they kept telling (still do) me how lucky I am that he sleeps so much when I was like well actually it'd be nice to spend some awake time with him instead of just watching him sleep.

 

[Stelly]

Haha I know right?? I wish he'd stay awake longer, whilst I love looking at him sleep and all- some interaction would be fun lol. It cracks me up when people are like "oh you have a preemie newborn? You must be so tired/exhausted!" And I'm sitting there going "ermmm no, no not so much..."

You are fairly close we are northern folk at least anyway lol

 

[lilbeanhoping]

Haha ya I kno! Emotionally exhausting with all the worry I'd say is more like it.

We're in the lower mainland so not to north for us but most ppl would consider us northern I guess haha.

 

[Stelly]

Emotionally exhausted is definitely more accurate.

Haha i guess i mean north compared to the rest of the US etc lol. My husband works up in our northern most town Barrow, in the Oil fields... But we live down south in Wasilla. Which probably doesn't mean much to you now that I think about it lol but yeah.

 

[lilbeanhoping]

Haha nope doesn't mean much! But that's cool.
We're an hour outside of Vancouver.

 

[lilbeanhoping]

Well we were back at the ped because lil man has been waking up freaking out and screaming because he can't breathe
He's now on steroids in his nebulizer to try to get it under control then were going to wean him.
Doc thinks the RSV may have aggrieved some reflux so she wants him on as much solids as possible and decrease formula.
She also thinks that he was more premie then what we originally thought because his lungs r just so far behind
But otherwise he's doing good in all areas!
It just sucks watching him struggle
She thinks it's all because of his lungs being premie but she said if this doesn't help well have to look into more things and she even threw around things like cystic fibrosis I'm sure its not that but who knows!