Cochlear Implant surgery - check!

Well the time has finally come and gone. Kendall had her cochlear implant surgery on February 12th . (She's kept us so busy since, I'm just getting around to blogging about it!)
Thankfully we had no issues with insurance and the surgery was approved very quickly. Although for a while we were not sure if it was going to happen, even right up to the day before. Kendall had been fighting a virus that left her so congested and snotty for over 4 weeks. We fully expected her surgeon to say no to the surgery once he heard her nasty cough. We were shocked when he said that he was comfortable with continuing with the surgery. He said she's been fever free, her lungs and ears were clear,  and that the virus was most likely on the very tail end. We were just dealing with drainage that could take weeks or more to dry up. It was now or risk her really catching something down he road.

 On a side note, I don't think that I mentioned this before but originally we were were offered the option of getting Kendall implanted at 6 months old. The catch was that due to her age and size she would only be implanted on one side. She would then have to come back in a couple of months to do the other side. I wasn't comfortable with having her go under anesthesia twice so we opted to wait and have it done bilaterally at 8 months.

We were up bight and early. We had to be at the hospital by 5am to prep for her surgery that was scheduled for 7 am.

 I was worried she would have fit not being able to eat prior to surgery, but thankfully she wasn't cranky. All the medical equipment and my iPhone kept her distracted.

The surgery took a little over four hours. We were updated on Kendall's status frequently by the OR nurse with this pager. The time actually seemed to fly by and before we knew it our surgeon was out showing us pictures and telling us it was a success.

Seeing her for the first time in the recovery room after surgery. It was a total flashback seeing Kendall all bandaged up like her brother. They even had the same hospital gowns. I can't tell you how may times we said to each other  "Can you believe we are doing this again?"

Once we got back to her hospital room Kendall was able to take a good three hour nap. We had the hospital staff bring us an adult hospital bed and we took turns holding her in our arms. Just like her brother, she wanted nothing to do with sleeping in a crib after surgery. They both preferred to be in an upright or inclined position. The small dose of morphine also helped get us through a rough spot after she woke up from her nap.
  Speaking of morphine, Kendall had a morphine dose ordered for every hour if she need it after surgery. She had one dose while she was in recovery and didn't need another until about five hours after that. We were grateful that Kendall didn't require pain medication that often because our nurse was pain in the butt about giving it to her. She kept telling us that a just a dose of Tylenol should take care of the pain as Kendall screamed in my arms. She also said that we should only give her Tylenol because she won't have morphine tomorrow when she went home. Really? I thought, she's in acute pain, she just had surgery on both sides of her head, and it's been five hours since she had anything! The doctor prescribed it for after surgery for a reason, otherwise I would have just taken her home and given her Tylenol myself. Grrrr.  It was all I could do to not go all momma bear on her and pull the I'm a freaking pediatric ICU nurse card on her. Thankfully my husband was there to calmly but sternly state "my wife would like her to have morphine and I need you to get it." She got the hint. ;)

Can you believe this was our hospital room? or shall I say rooms? I guess the census was low because they gave us a VIP room. It had a another room attached that had a pull out bed, refrigerator, microwave, and TV for the guest staying with the patient. Kemper and his cousin had a blast turning it into their own pad while visiting.

We had a pretty smooth night. Kendall was up about every 3-4 hours to feed and get an occasional scheduled pain med, but otherwise she was totally fine. I snuggled up with her in bed until around five am.  I could no longer stand the crick in my neck from not being able to move in fear of waking her. Daddy took over and I got to try out the "guest" room. The next morning Kendall woke up happy as a clam. It's amazing how resilient kids can be. She just wanted to play and play.

To minimize swelling Kendall had small drains placed behind her ears during surgery to drain the extra fluid. They were easily removed the next morning by her surgeon. She still had some drainage afterwards that required us to change out her dressings every once in a while. You would think I being the nurse I would change them out but nope Daddy insisted on doing it.

 
  Kendall had her surgery on a Wednesday morning and we were home by Friday afternoon. It just all went by so fast and we couldn't have asked for it to have gone any better. (well maybe the morphine part.)   K even enjoyed his time away from us. He had a blast getting spoiled by my parents.

Valentines Day was two days after surgery and none of her cute Valentines outfits would fit over her head, so we improvised!!

We took Kendall's ear muffs, Princess Leia buns, water polo headgear, ear protectors off Sunday night. They had told us to take them off Monday morning but she had such a hard time sleeping with them we decided to take them off a night early. (we did this with K too) Sure enough she slept through the night once we did.

Her swelling was much less than her brothers, most of it was on the top portion of her head where the implants were and around the temples. Kinda made her head look like an upside down triangle.

Her ears are really swollen here, but I thought her incisions looked great. Kemper's incisions looked very similar and nowadays you have to really look hard in order to see them.

           
My sweet bionic babies!!

K back in 2010 at 9 months                                     Kendall 2014 at 8 months


Up Next:
ACTIVATION!!!!
  

Sedated ABR/ MRI

When Kendall was 6 months old she had her last hearing tests to verify her degree of hearing loss. During these tests they looked at her brain activity to see any reaction to varying noise frequencies. To make sure they would get accurate results and not get any interference from her moving they sedated her. The entire process took about two hours total and she tolerated the sedation well. The results were as expected- profound bilateral hearing loss.

The last step in our cochlear implant candidacy process was to get an MRI. They needed to make sure that her cochleas and auditory nerves were fully developed. We were not too nervous about getting these results since we already knew that a flawed Connexin 26 gene was the cause of her hearing loss, but we still had to rule out any other causes.

She was such a champ and had no issues at all. The only problem we had was trying to keep all the medical equipment out of her mouth!!
 When Kemper had his MRI  they gave him IV sedation. This time with Kendall they just used gas to put her under and it was so much better. She had an easier time coming out of sedation and was back to normal in a very short time. It seemed like it took forever for K just to wake up post MRI.

Thankfully the MRI results were as expected too-  her auditory canal structure is intact as well as her auditory nerve so she is a perfect candidate for cochlear implants!

Hearing aids round two

 Well the time has come for Kendall to get her set of expensive chew toys  a.k.a hearing aids. I'll admit I wasn't as excited to get Kendall's aids as I was for her brother to get his.  Knowing that Kemper didn't get any benefit from them I was highly doubtful Kendall would either since she has the same degree of hearing loss. The only reasons we did get them were for that slight chance she could get some stimulation to that auditory nerve and the fact that we had to as part of the cochlear implant candidacy criteria. 

My sweet girl at three months old getting her first pair of ear molds made for her hearing aids.  Thankfully we were able to rent these hearing aids for about $500 as opposed to buying a pair.

Two weeks later Kendall sporting her Phonak Naida S III  hearing aids.

Like the pink sparkles? They were requested by her brother. He insisted that she get pink hearing aids. We couldn't get the actual aids in a color but luckily for us we were able to pick out the color of her molds.

It didn't take long for the squealing feedback noise to drive me nuts. Just the way I remembered. I think it's almost impossible to keep them on a child this young, especially when they are not sitting up yet. For the most part she has left them alone but they just squeal and fall out almost each time she turns her head. I tried putting a cap on her but she hated it and it just made the situation worse. Unfortunately she is not showing any difference in her hearing except for a few times we saw her turn her head to look at the dog when he barked, but we are not 100% sure she just didn't see him move with her peripheral vision.  We plan on getting her cochlear implants a little sooner than we did with Kemper so that should shorten our time using these pesky things!

Introducing Kendall Jane

Here are some of the pictures and birth announcement from Kendall's newborn shoot when she was just twelve days old.

photos courtesy of CnC Moments Photography


I was going through so much after Kemper was born that I never got around to doing his birth announcements. It honestly has bugged me for years so when I ordered Kendall's I had some made for him. ;)

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!!!

Kendall's birthday

The day has arrived!

Kendall's birthday

 May 28, 2013

  

Ready to go to the hospital.

 Our very last picture as a family of three!

The plan towards the end of my pregnancy was for me to be induced at 38weeks. My age, gestational diabetes, and Kendall's size were some of the factors. Although, instead of being induced I decided to have a c section instead. I had a rough delivery/ recovery with K and some lingering issues afterward so I decided this was best for us.

 The whole process went by SOOO fast.
We went into the OR a little after 2pm and she was out by 2:26!
She came out screaming and screaming, that girl had some good lungs!

I know I'm her mommy but she was just so stunningly beautiful, and I swear she was already smiling at us in the recovery room. I also could not believe how pink she was! I guess I'm around so many "blue" babies at work that I kinda forget how pink they really should be!

 Kendall had her entourage waiting.  My sister Christine kept Kemper entertained with a game of peek-a-boo with all the nurses and babies in the nursery.

Proud Daddy showing Kendall off to everyone while I was in recovery.

K wanted to give her a high five!

First picture with my babies!

Kendall had a few visitors ;)

K was so excited yet so nervous to touch her.

The next day while I was resting Kemper and his Daddy went to Build-A-Bear to get a present for Kendall. K picked out and made her Tinker Bear!! He also gave me some beautiful flowers. He said the card read " To Mommy From Kemper"

First official pic as a family of FOUR!!

Finally it was time to leave. We took Kendall home in K's former car seat. It may be boyish, but she's all GIRL dressed in her pink dress and bonnet!!

 Kemper insisted on pushing the stroller, such a great big brother already.

Home sweet home. We feel so complete.