Heart disease, developmental delay, hearing loss, failure to thrive...

[sbrinton]

We have had a crazy couple of months with our two little boys' health. Thankfully our oldest son is fine. But the our three and one year olds have a lot going on.

About two months ago, when we were at a walk-in clinic with our son Micah, who was then 2, the on-call doctor mentioned that Micah had a heart murmur. He said it was probably nothing. Last week, at Micah's 3 year old check up, the pediatrician again listened to his heart and heard the murmur. She sent us to a cardiologist to have his heart checked out. Today we discovered Micah has a PDA that will need to be closed.

And then there is Zephan, who is 16 months. Zeph was born prematurely. He is not growing well and is "failing to thrive." He's behind developmentally. And now it looks like he may have a partial or temporary hearing loss as a result of ear infections.

This is all feeling like a LOT in one week. And we still have like three or four more doctors appointments this week. Argh.

[starlein26]

That *is* a lot to deal with in one week. Preparing for surgery is tough. Best wishes to you and your sweet son.

I also hope you can figure out why your youngest is having problems gaining weight and developing within a "normal" range. All the best.

[sbgrace]

How overwhelming.

[2boyzmama]

Goodness mama!!

There's lots of us here familiar with many of those issues, there's a "heart" thread that you should post on (it might be a page back, but I just posted to it two days ago, so it's active). There's several of us with FTT kids, for various reasons. There's also several of us with hearing impaired kids, again for various reasons!

So if you have questions, want experiences, etc, post and we'll try to answer!

[Linda on the move]

So sorry for everything you are going through.

Originally Posted by sbrinton

And now it looks like he may have a partial or temporary hearing loss as a result of ear infections.

my understanding is that temporary hearing loss with ear infections is very common, and that the kind of damage that leads to permiment loss is so painful that the child would be screaming and screaming screaming. Are the dr.s recommending tubes?

My DD had cronic fluid without infections, but it affected her hearing so they put in tubes. It was quick and easy and made a world of difference for her. So, depending on what exactly is going on with your little guy, there may be a simple solution for this one.

[mrsfru]

And then there is Zephan, who is 16 months. Zeph was born prematurely. He is not growing well and is "failing to thrive." He's behind developmentally. And now it looks like he may have a partial or temporary hearing loss as a result of ear infections.

I'm sorry for your rough week--I can understand, as we're there ourselves.

I had 2 preemies, first ds was born at 29 wks and second ds was born at 35 wks. Both had some developmental delays, had reflux, food intolerances, etc. DS2 was FTT for a while. As it turns out, ds1 is now fine as far as preemie stuff goes--he's catching up (dev delays), he's an average size 4 yr old--he has some health issues right now that are more likely the cause of his delays now and aren't related to prematurity. DS2 ended up having serious food intolerances (that did NOT turn into allergies) that caused his FTT and severe reflux. Once we had that under control, he took off. He's perfectly healthy now, aside from a tendency towards asthma (which we all have).

The preemie stuff generally does get a lot better by around age 2--it's most obvious before then. DS2 is now 19 mos and is completely on track.

GL Mama!

mrsfru

[sbrinton]

Talking to the speech therapist yesterday, she thinks Zephan (the 16 month old) has some hearing loss or possibly changes in how he is perceiving sound as a result of the ear infections. I think these are things that would improve if we can get the fluid out of his ears and give him time for his hearing to develop more normally. I think we'll end up with tubes, but we'll find out more about that tomorrow.

Our 3 year old, Micah, who has the PDA was a preemie too. He generally caught up by about 18 months, but still seemed very fragile. He's still small for his age (barely at the 5th percentile in weight, although this is better than off the charts as he used to be) and he gets sick very easily. Last night after posting this, I woke up to him at midnight struggling to breathe due to another cold. We spent the middle of the night at the ER before getting his breathing back under control. I got maybe 3 hours of sleep before everything started again today.

No wonder I feel like eating a box of oreos.

I guess I'm wondering if you all have any advice for coping with everything. It seems hard to keep doing the things I need to do. Cleaning the house, making meals, working. I have a small business that is completely on my own schedule, but right now it's hard to work. And normally I am a triathlete, but currently it's hard to train. I sort of want to crawl into bed and wake up tomorrow to find out this was just a dream and my kids are fine.