First off I want to say "Thank you" for the support and words that I have recieved over this. Words of encouragement, positive thinking, experience...the works. When times are tough its just nice knowing people care and often that's enough to get me through the day.
On another note, I want to emphasis a few things.
#1. This CDH thing sucks and I'm pissed off for Payton's sake that we ever heard about it. I'm pissed off that she will have a scar (3 to be exact) on her forever marking this horrible defect. I'm pissed off that for the first 8 weeks of her life her primary caregivers were virtual strangers. I'm pissed off that I didn't get to choose her first (or second, or third) haircut. I'm pissed off that she had to cry and look at the people around her for help when she went on the vent, on the cpap, when they drained her infected incision, every time they placed an IV, took blood, placed a PICC line and no one was able to help her because it was in her best interest that they didn't. I'm pissed off when she grimaces due to reflux, when she has stomach pains and I don't know if its 'normal' or CDH related. I want to take it all away and give her normal and it pisses me off that normal will forever be redefined for her.
#2. I'm incredibly thankful for the fact that I get to hold my daughter in my arms, thankful that her stay in the hospital was never frought with life teetering issues and that she kicked CDH's butt in the breathing department. I'm thankful that I get to watch her breath with no problems.I'm thankful for a primary nurse who took to heart her roll as Payton's advocate and not only cared for her but got her out of there faster than if we didn't have her as a Primary. I'm thankful that I get to breastfeed Payton as much or as little as we want and that she's gaining weight like a champ on a totally oral diet. I'm thankful that she's tube and medication free. I'm thankful that our 3.5 month old is fitting into 6 month clothes, thankful that Christmas this year will see presents for two little girls under the tree, I'm thankful for the fact that Payton's hips turned out to be normal. I'm thankful for so much and not a day, hour or moment goes by that I don't look at her little face and am incredibly grateful for how lucky we truely are....but I'm still pissed all at the same time.
So after saying all the above I just want to say that in keeping with the theme I'm very pissed to say that Payton hasn't caught a break in the hearing department. She has some hearing loss. How much in a long term sense we don't know and monitoring her will be key to ensure that we catch it if it continues to deteriorate.
At this point this is what we do know.
She has fluid in her ears. It could be that its responsible for the hearing loss but the audiologist doctor did give us a pep talk about her loss in the long term sense, letting us know that it 'shouldn't' affect her verbal development as long as we take steps to cater to her issue.
His description of her loss is like putting your fingers in your ears...that's what her hearings like.
She hears better on her left than her right. Her left she has some loss on the mid level and lower level sounds while her right ear she has hearing loss in the mid and higher ranges.
We're told to talk to her often because she's going to miss a lot of what we say so the more we say the more she'll catch. We're also told to hold her close when we talk to her since the vibrations of our voices will help her understand the sounds we make.
Payton will be checked briefly again mid December when we meet with the Neonatologist. That won't be an indepth check but it will give us an idea of whether the fluid in her ears is still present.
If the fluid is still present its likely she will have tubes placed to help drain the fluid...it may (fingers crossed) help with her hearing (that isn't something that was fully explained due to a very hungry baby by that time). The doc did caution that she's quite young to have the tubes placed and this will be something addressed in the future.
The doctor wasn't 100% sure whether her hearing would degenerate over time. CDH babies who are on ECMO tend to be higher risk for hearing loss and a current study at the hospital is only looking at ECMO babies. He did refer to the person in charge of this study and the odds of her CDH being the underlying cause of her hearing loss is 1 in 6 chance. Not huge but not small either.
So CDH is still pissing me off...primarily because if Payton's hearing loss is permanent I worry about all the things she will miss out on, all the hurdles she will encounter and it breaks my heart when I look at her little face to imagine how much more we're going to ask of her.
But, I'm still so incredibly thankful. She is amazing and she will continue to teach me how much more amazing she has in her.
For now, we've dusted off the baby sign books and are committed to getting ahead of things. To be prepared just in case. So we're going to learn 1 new sign each day and commit to using it in our everyday lives.
Today, our 1st word is "Funny" because we're also committed to keep the laughter, above all else and I hope this word gets used a lot.
3 comments:
Hello, Renee
What can a person say? I'm not sure! I focus on expecting the very best success for Payton - in all areas of her life!! Payton is an amazing baby - as is her Mother, Father and sister!
Take care, My Dears -
Love to All, Auntie Bev
Renee,
You guys are an amazing team. And, Payton is a fighter. I have no doubt she'll blast through this hurdle, as well. I'm praying for your family. I'm just so glad that she is growing in leaps and bounds. Hang in there, mama. Remember to take care of you. Because you take care of everyone else.
Love,
Amy in Chicago
Renee, I just wanted to let you know that Samuel's audiology tests at Payton's age were considered inconclusive. The audiologist explained a number of reasons for this: (a) babies very often have fluid behind their ears when they have been laying still and sedated for much of their young lives - it's common and most often resolves on its own, (b) these babies hear many bells and alarms for their first several weeks and so they don't respond to noise in the way that a "normal" baby might, and (c) some things just look different for these babes with an atypical beginning; for instance, babies with an extended hospitalization often have "stressed" EEG readings even when at rest, which can skew some audiology tests but resolves once they've been at home longer with more "normal" stimulation and attachment experiences.
Based on just our first audiology exam, Samuel would have been considered "hearing impaired" also. Once the audiologist reviewed his history (his file weighs more than he does), she put the findings into context and said she would not make a diagnosis until she'd followed him for longer to know HIS path.
As he grows, things keep changing, including the fluid behind his ears (which can completely skew the results of their tests and may or may not be a longer term issue). He is still being followed so we don't know for sure but the audiologist believes his hearing is actually normal and just doesn't fit into their standards at this point.
Sorry this is so long but I wanted to let you know this. I would respond to Payton as if she may not hear clearly at this point but I wouldn't assume that it's a longer term issue at all.
Email anytime, fellow CDH mama. :)
Corinne (in Calgary)
Mama to Samuel, lcdh, Feb1/11
www.samuelslight.blogspot.com
austinfamily@hotmail.ca
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