Wednesday, May 16, 2007

My poor, 'drunk', cranky baby boy.

My seven month old has been monitored pretty much since he was born for a possible hearing deficiency in his left ear. To date tests have always concluded with the Audiologist saying 'I think there might be a mild hearing loss, we need to do more tests to figure out what and where this loss is'.

Today she figured it out.

He had a sedated ABR (Audio Brain Response) test, where the nurse gave him disgusting medicine (chloral hydrate - and yes, that is what Anna Nicole died from!), to get him, and keep him asleep. This is the second test like this he's had, since the first one couldn't be completed as he woke up before the Audiologist could finish her measurements.

He did a lot better than me and took his meds like a champ, but watching your baby go all limp and floppy in a matter of minutes is alarming, when you're used to seeing them gently lull off to a gradual and easy sleep.

Watching his head scrubbed and electrodes attached on his forehead, and around his ears, and looking at him laying there with wires from his head, his ears, and the monitoring devices attached to his feet is hard. Watching the look of concern on the face of the nurse and nurse practitioners when his oxygen levels aren't what they should be nearly makes me throw up.

I found myself choking back the tears and telling myself, 'this could be worse, lots of other moms deal with much worse things, count yourself lucky this is not some horrible, life-threatening situation you're in.'

Then I find myself asking 'Why should I choke this back?' - yes I know there are worse things, but it is still horrible watching this kind of thing happen to your baby, to find out whether or not he has a 'problem', and projecting about what that 'problem' will entail in the future.

I have stayed at home today and let him sleep, and cuddled him (as much as his sister will allow) when he's been awake. He's still floppy, acts like he's 'drunk' and he's getting cranky at times which is very out of character for him.

Today's findings are that he has a moderate problem in a specific hearing frequency. Definitely not a major issue, and hopefully not something that will require major intervention such as a hearing aid. It's still hard.

We now have to set up consultations with ENT specialists, and a Geneticist to find out what if anything has caused this and whether or not it is likely to get worse. He'll also be referred to an 'Early Start' program (whatever that is?) to monitor his speech development. I know these are all good things, that this has been detected early, that he'll be monitored in case it deteriorates and intervention can take place as appropriate. It also gives me a heads up that if there is a genetic reason that I can watch for issues in my other child. I still hate it.

I hate that I have to keep taking him back for more appointments.

I hate that he has to see more specialists.

I hate that they talk about hearing loss.

I hate that when trying to explain all of this to people they think something is 'wrong' with him.

I hate that my sweet, placid, loving, baby has to be poked and prodded and put to sleep.

I hate feeling like this is somehow my fault. Did something happen in utero?

I hate that he's all floppy still from the medication, and although he's trying to smile through it, more often he's looking at me as if to say 'what happened to me mom?'.

19 comments:

Stay at home dad said...

It's nothing you did, that's for sure. We all have problems - let's face it and all this is to ensure he can deal with this one as easily as possible.

We lived with the worry of a problem with long term effects for a couple of years and it's not nice I know. But they don't worry as much as we do!

Sahd.

Shauna said...

I'm so sorry.
I know you probably don't want to hear this, but it's good it was caught early. Take care. You deserve chocolate!

Brillig said...

Oh, Annie. How incredibly hard. I would be bawling. You're being very brave and you already "know" everything that people will say to comfort you, so I won't say any of that. Instead, I'll just say that I'm here and that I'm sorry you guys have to go through this. I hope that the specialists find what they're looking for and you can all be left in peace. Good luck with everything.

Rebecca said...

It's completely normal to be upset when your baby has to suffer (even in the tiniest way - and this doesn't sound all that tiny). I would be beside myself too.....

Deborah said...

Aw Annie, I'm so sorry you have to go through all this. Poor little fella! I felt the same way when Ciara was in the hospital last month, four people holding her down to get an IV in... just awful. I had the same feelings too, feeling almost guilty that others had so much harder things to deal with, but at the same time knowing it didn't make what you are going through any easier.

Hang in there... I'll be thinking of you!

moodswingingmommy said...

Oh sweetie! That must be very difficult. Despite your rationalizations, he is your baby, and the thought that anything could be wrong, however small, can just haunt you.

Try not to blame yourself. It's not your fault!

Flamenco Mom said...

Annie, I'm sorry you and J had to go through that. It's so painful as a parent to see your child in that state. I know the feeling. Believe me, it's not your fault that this is happening; though I know your instinct as a mom is to wonder if you are somehow responsible. Try to stay positive, and know your friends are here for you! HUGS

Annie said...

Thank you for your kind comments. I realise that I may have sounded totally whiney in that post - but a big part of me was just hoping that after all these 'inconclusive' tests, that there would have been something faulty with the equipment or something, and she'd tell us all was 100% fine. It's disappointing then when it's not. I dread to think what kind of prodding he faces at the ENT specialist? Not thinking about it until after we return from Ireland though.

Cooks on the Coast said...

Best of luck. Anytime babies go thru anything like this, it does seem harder on us parents than on them. They seem to bounce back without any lasting trauma while we feel shattered. Hugs to you!

In the Trenches of Mommyhood said...

Best wishes. Stay strong.

Life As I Know It said...

Oh, I'm so sorry.
It's awful, painful to watch your baby go through endless tests and pokes and prods.
It is absolutely nothing you did.
Hang in there and good luck...and know that you obviously have a lot of support in blogland!

Janet a.k.a. "Wonder Mom" said...

Oh baby. I'm so sorry.
You are such a wonderful Mamma and you are doing ultimately what's best for your boy...

It's so hard on you, but we moms take pain so our children don't have to.

You and he will be alright.

I send you my love.

(and I'm sorry I make you cry...)

The Good Woman said...

It must be tough putting on the brave Mom face for him when it's clearly (and understandably) a frightening thing to go through for both of you.

But at least you can vent in your blog. And now that the diagnosis is in place you've got an idea of what you're dealing with.

Be strong. Thinking of you.

jenny said...

Thank you for your comment on my recent post and I've come to check out yours.

Please, take heart that a moderate hearing loss is nothing to cause such heartbreak. I know it may seem difficult for you if you arent familiar with deafness. It always seems like the medical profession makes a huge issue out of hearing loss and go on to recommend all sorts of drastic tests and surgeries and the like. I am here to tell you that you should wait before you do any sort of surgery, please.

First, you could learn basic sign language and actually you should learn it whether your child has a hearing loss or not. My child was able to tell me at 8 months old what she wanted...she knew the signs for "more" and "full", "milk" and "all done". And it made for less crying fits because she could communicate to me what she wanted instead of me trying to guess.

They did the same to my first 2 children when I had them in the hospital and because I was deaf, they subjected my babies to all types of hearing tests. Which quite frankly, pissed me off. I'm deaf and if they were too, I was ok with that.

If you have any questions, feel free to ask me and I will be happy to help. I used to teach sign language to 5 year olds and they pick it up quite quickly. Good luck and things always work out for the best somehow.

Annie said...

Jenny thank you :) I can see the benefits of sign language, definitely. Several of my friends have used it with great success with their children. My daughter was verbal from an early age, so I never really felt the need to but perhaps should use it with my son, even though he can hear (albeit not perfectly perhaps).

We, thankfully, are not at a point where surgery is even a consideration, or any intervention at all. We have to see the ENT specialist in order to find out what the physiological reason for this 'hearing loss' is, and from there determine whether or not it could get worse.

The audiologist also told me on one of our visits that hearing loss is the number one birth defect in the USA - something I wasn't aware of.

Thanks for visiting :)

lady macleod said...

Oh you poor dear! It doesn't matter that "there are worse things" when it is your child; that doesn't make you any less a compassionate person. There I have spoken! It is true!

And it is good that you caught it early, and it wasn't anything you DID.

No matter what, I can tell you it is worse for you than for him. He will adjust and excell.

have a great holiday!

jenny said...

Annie--

I re-read my comment and in a different frame of mind I realized that what I said might have made you think that what you are going through isnt such a big deal. I know it must be agonizing for you, especially to see your son all hooked up to various machines and going through all sorts of tests.

I'm glad though, that so far, surgery isnt in the near horizon. The only reason I said what I did, was because I know of a hearing parent who had a cochlear implant put on their 6 month old baby. I always felt that at 6 months old, how could they REALLY tell that the baby is deaf?? Maybe loud noises dont faze baby, maybe the hair follicles are not fully developed yet, maybe there was an ear infection and baby was slow to respond to stimuli, etc... Once you get a cochlear implant, it destroys all hearing, even if there was a little bit of hearing in that ear.

What you decide to do, is ultimately your familys' decision and I know there will be many more hearing tests to come for you and your son. Lord knows I went through hundreds of them as a child. But whatever the outcome, whatever you decide, he will adapt and adjust, just like you and your family will adapt and adjust.

I wish you and your family all the best of luck! And I will be adding you to my links. I like your style of writing and I appreciate you sharing such a difficult issue on your blog.

Annie said...

Jenny - no need to apologise :) I didn't think you were making it out to be no big deal and I really appreciate your perspective on it all.

My first daughter has never had anything more serious than an irritating cold, she's never been sick and she's never had to have anything examined or reviewed due to concern. I realise that the world is full of kids who face any number of issues, but when you've had a child 'sail through' all the tests etc, to have one that doesn't is unchartered territory, and I can't help wishing he'd sail through as she did. I know it's silly, and truly I'm not all that hung up on it - it was just a hard day when I didn't get the answers I was hoping for.

Above all I am grateful that he is happy, he is healthy and he is normal :)

lisamomtothree said...

Ah, Annie, I'm sorry it didn't go perfectly. That's so hard. Be sure to email me if I can answer any questions or look them up for you. I know the early intervention is just to monitor for the possibility (not the probablity) of his speech being affected.

Good luck with the followups and have a great time in Ireland!