She is listening...but not hearing!

I just wanted to update my last post about Kaycie and her hearing while it is all fresh in my head.

We went to the audiologist at the ENT’s office on Monday. As of that point, we knew that she was not passing her hearing screenings, but we weren’t too super concerned. I had read enough to know that often times, babies don’t pass their hearing screenings because of a fluid build-up, and that is easy to fix with tubes. She talks and “coos”, and I assumed she would not be doing that if she really couldn’t hear us.

You would have thought she was being tortured by the screams she let out. They kept calling her “feisty”. We all know she sure is. My baby girl that was born with nothing more than a squeak for a cry has become very vocal! It took a while…we were there for over 2 hours, and finally she just passed out, which is what they wanted her to do anyway. They told me to bring her to the appointment tired and hungry in hopes that feeding her would make her fall asleep. I kept telling them that she doesn’t work that way, but right as we were about to give up, she passed out.

Anyway, it turns out that Kaycie does have hearing loss. She has a 30 db loss in her left ear and a 70 db loss in her right. On Monday, this meant nothing to me either. They mentioned fluid, but they also mentioned hearing aids. The audiologist told me that a 30 db hearing loss is as bad as it gets for being “just fluid”. She said a 70 db loss means there is something else going on, and now we just have to figure out what. At this point, “just fluid” is what we were hoping for because then it is easily fixable. She immediately scheduled us for an appointment today (Thursday) to see the doctor to discuss a course of action. To help, this is a chart showing what this may mean for us. In her left ear, she sits comfortably in the mild category, but the right ear is as high as she can get in the moderately severe category.

Degree of hearing loss	Softest sound able to be heard (in decibels)	Frame of reference
Mild	26 to 40 dB	Able to hear the loud or more intense vowel sounds, but may miss some of the softer consonant sounds.People with a mild hearing loss may have difficulty hearing soft spoken people and young children. Also, they may have to ask people to speak up or repeat themselves on occasion.
Moderate	41 to 55 dB	In addition to missing consonant sounds, vowel sounds then become more difficult to hear. People with a moderate hearing loss often comment that without hearing aids they hear, but can't always understand.
Moderately Severe	56 to 70 dB	Without hearing aids, speech becomes inaudible, whereas with hearing aids, speech may still be difficult to understand.
Severe	71 to 90 dB	Without hearing aids, speech is inaudible, but loud sounds like a baby crying or a dog barking are audible. Hearing aids may no longer be enough for people with severe hearing loss.
Profound	91+ dB	Without hearing aids, speech is inaudible, but very loud sounds like a lawn mower or jet airplane are audible. Hearing aids may no longer be enough for people with profound hearing loss.

 

Today we saw the doctor. Before he even looked at her, he was telling me they would probably try tubes to drain the fluid, and while she is sedated do another in depth hearing test. He said 90% of the fluid will drain immediately, and they should be able to tell what her hearing will be without the fluid. Then he brought her to a room, and I had to hold her body down while the nurse held her head…it was torture. If you remember me talking about how I used to have to restrain LJ at the eye doctor while they poked a rod behind his eyeballs while he screamed…yeah, I am not sure which is worse at this point. He got a good look in her ears and said that he doesn’t actually see any fluid…darn it.

The plan of action sort of changed after that. We are currently scheduled for surgery on March 12 (hopefully they end up being able to get us in sooner…6 weeks is a long wait). At that time, they will put her under and if there is fluid, they will insert the tubes, do the hearing tests, and schedule a CT scan to figure out if there is a bone malformation in the middle ear. If there is no fluid, they will only do the hearing tests. The hearing tests will help determine the settings on the hearing aid/s if she ends up needing them.

What this means for Kaycie…she may develop language more slowly. Right now, we have been told she can hear us if we talk fairly loudly and without background noise. The washing machine, the TV, the heating and air cause enough background noise that she cannot likely hear us clearly. We probably sound like we are all under water all the time. It explains some of the little things we have noticed. No matter what way we turn her when she is laying down, she always puts her left ear up…she can hear better. It also means she has quite the flat head. When she hears a loud noise she looks around trying to figure out the source…she is having a difficult time determining where sounds are coming from. It makes sense as to why she does not engage unless you are right in front of her. It means an eye check is next. The ENT feels that it is important for two reasons…a lot of the time eyes and ears go together. If there is an issue with one, it is more likely that there is an issue with the other. Also, if she has a deficit in her hearing, we want to make sure she can see well. They always say those that lack in one sense make up for it with the others. It means that one day, she will be able to decide for herself if she wants to use a hearing aid, if she wants to look into corrective surgeries, or if she just wants to hear what she can naturally.

What this means for our family…it means we become more aware of the noises around us. It means that we have to work harder to get her attention, and we have to be animated in talking to her. Of course we are sad that she has to go through this, but our baby girl is healthy! We are not devastated, and we are not defeated. The way I look at it is that we have had 2 preemies that can easily come with a myriad of health issues. If this is the biggest obstacle we have to face, we will dive in head first and praise God that we have our babies with us! Of course, my ultimate prayer is that we get to that surgery 6 weeks from now, and they come back with the great news that everything is fixed. The doctor did warn me today though, that it was not likely that both ears would have full hearing since the right ear has never passed a screening since birth. It may happen with the left ear though.

What this means for you…it means that if you believe in prayer, please pray for her healing. It means that if she does end up with some cool hearing aids, don’t treat her any differently…except for maybe talking a little louder if there is a lot of noise. It means if you have any knowledge, please share, as this is not something we have any knowledge about, and it can get overwhelming trying to figure out.

We hope and pray that this ends up being a minor hiccup in the life of our baby girl, and I may have gone into more detail than I really needed to. However, I also know I have mentioned the hearing screenings to some of you, so this is where we are at.

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Growing fast!

I wrote this last week...I forgot to post it. I have realized how much I have referred to my old posts on LJ to see where he was when in comparison to Kaycie since often, this is the only place I have documented anything! So here it is...I plan on being better about posting this year now that life is settling back down into a new routine!

 

Wow,  so little girl has kept me on my toes for sure, and I just haven't had a moment to really sit and digest her first months until now!

 

Kaycie has over all been healthy...she is 4.5 months old. At her 4 month appointment she was 12 lbs, 9 oz...a whole pound less than LJ was at 4 months. That part amazes me, but she is on the charts and growing well! She still fits into most of her 3 month clothes, but I did wash her 3-6 and 6 month clothes over the weekend because I know one day we will just wake up and she will need them!

 

Kaycie struggled at first...I assumed when we switched her to the formula LJ was on for his milk protein allergy, things would clear up like they did with him. After struggling until mid-December, I called her doctor and demanded a new medication for reflux. I am so glad I did because the Prevacid has turned her in to a new baby...she smiles! She still makes you work for it sometimes, but the smiles and giggles have become more frequent and we have been able to enjoy her just being a baby lately!

 

Until the past few weeks, we were still going through sleepless nights...not just sleepless nights but screaming sleepless nights. Poor baby was just miserable. The past few weeks have gotten progressively better and she has been sleeping 7-8 hours at a time...last night she slept 11! She isn't much of a napper as hard as I have tried to get her to nap when LJ does, but she takes several catnaps throughout the day...we will keep working on that! I don't think they ever nap at the same time.

She has just started getting stronger with holding her head up and I am happy to report that she rolled over purposely 3 times today! LJ has been cheering her on, and I even got the first one on video! Now that she feels better, we can focus on the fun stuff!

 

The only lingering issue is her hearing...she has still not passed the newborn hearing screening in one ear. She failed it twice at the hospital, at her 2 week appointment, and at her 4 month appointment. Does it concern me...not a whole lot. Of course I don't want her to struggle, but I have been reminded recently that there could be a whole bunch of worse things that could happen to our children. We have been referred to a specialist and will go from there. There are 3 things that could happen...it is nothing but a fluke, she has fluid behind her ear and needs tubes to clear it for hearing to come back, or she has permanent hearing loss requiring a hearing aid. Of course, I hope for option 1 or 2, but like I said...we can adjust, she will adjust, and she is healthy.

 

LJ loves his sister and she really watches him. He always wants her on the floor with him...even if she doesn't want to be. He brings her toys...usually cars. He always helps put her to bed, and he likes to help in general...I think that is how he has finally come to terms with being a big brother. If we ask him to help, he feels big. He likes to feel big! He hates having his diaper changed...unless you ask him to help you change it. He "helps" by laying down. I am learning these things!

Wise words, little man

On December 20^th, Matt’s Grandma Sullivan passed away at 90 years old. It is a sad time for the Sullivan’s because she was the matriarch of the family. I wish I had gotten to know her better, but every time I saw her, she always welcomed me and she was such a kind soul.

We were scheduled to go to Wichita on the 23^rd for Christmas, so while we were sad we just missed seeing her one more time, we were also thankful that we got to go to her funeral with the family. On Friday, December 27^th, we brought the kids to the funeral before our flight was supposed to leave to come back to Atlanta that afternoon. I was stressed about how they would behave, since sitting still is not a strong suit of either child right now. Matt kept telling me not to worry.

It brings up another thing about me…I freak out about the most random little things ALL THE TIME! I can lay awake at night stressed out about the most mundane things…getting somewhere on time the next day, making phone calls (making phone calls makes my palms sweat), flying with the kids, anything. Last night it was the fact that the kids got a check for Christmas and I couldn't remember where I put it...I didn't have the energy to go get it to make me feel better, and instead I laid awake thinking about it (I am organized...I had it in my hands in 30 seconds this morning). You didn’t know that about me, did you?! Matt is regularly reminding me to let things go...I think sometimes he thinks I am losing my mind!

Anyway, we were sitting at the funeral, and the priest had just finished talking about Grandma’s life. She had strong faith and knew that this life is temporary and seemed to be ready for what is to come. In her last days, she started refusing her medication. When she was asked why, she stated, “Jesus is taking care of me.” Powerful words from a strong God-loving woman. Words we all need a reminder of on occasion.

At the end of this talk about her life and death, there was a brief silence in the church. My son, who seems to have a knack of saying the right thing at the right time, proudly and loudly stated, “Do not be afraid!” I have talked before about how LJ repeats this statement regularly because that is what Jesus tells us to do. If you ask him who says that, he will very proudly say, “JESUS!” Wise words little guy, wise words...and perfect timing.

I’m not one for New Year’s Resolutions, but this year, I have made a promise to myself…to try to let the little things go, to have a little less stress, and to not be afraid! The year ended a little rough…sick family and friends and loss. I have 2 beautiful and healthy children and a wonderful husband. I have a roof over my head, and all of my needs are met well beyond my needs. I will pray for those around me to have peace. I will pray for those around me to have comfort.

Sometimes it takes a little person to remind us that we are not in control. It took a reminder from my two year old in a moment of grief that God’s got this.

Happy new year, and I hope that 2014 brings all you could hope for!