Heartbroken Part 2

6/24/2013 



I didn't mention this in Kendall's birth story post, but while she was in the hospital she failed her new born hearing screens. Four weeks later she failed her ABR and multiple other hearing tests. It is now confirmed that like her brother she too has a profound hearing loss. She is deaf.
It was like we were replaying the same scene from four years ago, but at least we were prepared this time. We knew that Kemper's hearing loss was genetic and that we had a 25% chance of  passing this on to any future children.  It had taken us a while to decide on having any other children but ultimately we knew we were not done. In addition we never wanted K to think that if we never had any more children it was because we were afraid they would be deaf too. We went into this pregnancy knowing this baby could be deaf and we were at peace with that possibility. The entire pregnancy I did my best not to think or worry about it. I took the Scarlett O'Hara approach to it " I'll think about it tomorrow."
  So when it came time for Kendall's hearing test we had a plan. When we had originally checked in the hospital we told the staff that we wanted her hearing test to be done at the latest time possible . We just wanted to enjoy her and this special time and not have to deal with it for a couple of days. We knew that either way the results went we were going to cry. It was going to be a very emotional time so we were in no rush.
The night before the test I was nursing Kendall and I couldn't believe how much she was like her brother. She looked, felt,and acted so much like him. She made the same noises, nursed,cuddled, cried all the same way. As I handed Kendall to the nurse that was gong to take her back to the nursery she made a comment about how Kendall was the quietest best sleeper in the nursery. Right then and there it hit me right in the heart. She was deaf.  I remember the nurses saying the exact same thing about Kemper after he was born. That gut feeling/ mothers intuition  I had been waiting for finally came. I immediately broke down crying and told my mom and husband what I felt. I think they were shocked because I hadn't voiced any thoughts before and I just blurted it out of nowhere. They tried to calm me down and tell me it was just hormones and nerves, but just like with her brother, I knew.
The next day when they came to take Kendall for the hearing screen we asked them if they could do it in the room with just my husband and I watching as opposed to taking her and then bringing her back with the results. They agreed and started the test. Shortly into the screening we could already tell what the answer was. When they get real quite and start nervously shifting in their seats you know something is up. Finally when it was over she turned to us and stated that she did not get a response in either ear. She quickly started giving us the "it could be fluid in her ears speech" blah blah blah. We knew what it meant. This wasn't our first rodeo.  Even though I already knew the answer in my heart it was still just as painful as was when we had received Kemper's results. Except this time for a brief moment I was pissed. This was the one thing I desperately wanted to be wrong about. I remember looking around as if looking for something to throw. All I could think was why? Why again? Did we not learn what we needed to the first time? We had a 75% chance of normal hearing, more than half!! WTH?? My husband and I just cried, hugged, and kissed our baby girl. I think one of the hardest parts was telling our family. To see their crushed expressions after we told them broke my heart. I know it's stupid but for some reason I felt like I let them down, I don't know why I felt like this but I did. Thankfully we have the most supportive family and just having them there was a reminder that we were not alone in this journey.


Later that evening my husband and I were treated to a celebratory dinner of lobster and steak by the hospital. They do this for all the parents of new babies, and in case you are wondering it did not taste like hospital food it was wonderful :).  We had originally planned to eat our dinner together privately so we could talk and mourn over Kendall's test results. K had a different idea. He wanted to stay with us and refused to go back home with his grandma. We tried to convince him he would have more fun if he went but he still said no. So we let him stay and had one of our family members pick him up his version of steak and lobster- chicken nuggets and fries from McDonald's. Turns out letting him stay with us was what we really needed at the time but didn't know it. He had us laughing and smiling the entire time. He was just talking and talking and talking.... Then it dawned on us, what are we worried about??? Look at him! he's perfect! He's a happy boy doing great. His sister is going to do just fine. We did it once and we can do it again. Enough tears and worry, we were not going to let this rob us of special moments like it did before.

I look back at this picture of myself and K and I can still remember the pain and agony I felt after his diagnosis. I was in a fog, my world was collapsing, and I couldn't even enjoy my nephew's first birthday party. I wish I could go back in time here and tell myself that it truly was going to be okay. Thankfully this time with Kendall I can.


We were at the Perot Museum and couldn't help but take a picture in front of this. We know all about the Genetic Lottery!!!


3 comments:

EllenF said...

I know you must have been on a bit of a roller coaster of emotions lately. Having a new baby is already intense, and to learn you won the 25% lottery in addition is big. And, what a lucky little girl to get you as parents. You know she will thrive, and you can enjoy the journey! Will you try to get CI's earlier? Will you do anything differently? Your new baby is beautiful and perfect! Congratulations, and I hope you gave fully recovered. Your blog has been an inspiration and source of hope to me.
-Ellen
Mom to Peter, 22 months, 2 Neptunes and tons of words.
Peterstale.blogspot.com

Shannon said...

You made me cry. We still don't know why our son is deaf, but we do have an older hearing daughter. If we find out it is genetic, I could only imagine the thought and pain of wondering about subsequent kids.

But you are right. Your son is perfect. And your daughter is too. And my little boy is as well.

Hunter's Mommy said...

You got this.... look at you, you have an amazing little boy talking up a storm and now a baby girl, a daughter who will be your best friend for life. She was given to you because you have your S*** together and will give her everything and more! She will be just as amazing as Kemper, and has the advantage of you already going through this!

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