When I typed my last post, I could have never imagined what the following day would bring. Rest and peace were followed by frustration and disappointment, accompanied by sustaining peace, and then followed by comfort, tears and joy beyond my expectation.
Elizabeth woke early Wednesday morning and we enjoyed some wonderful mommy-daughter time together before the rest of the crew joined us. The four of us had a really nice morning together. We played on their new swing set, dug weeds out of the front yard, and played together. My heart was at peace. I wasn't expecting surgery; although, I was hopeful. I was a little bit anxious to hear back from the Sherry at the surgeon's office. I wanted to know when the surgeon was going to be able to do his consultation with the insurance company and she said she would let me know first thing that the morning.
At 12:30, I got an email from Sherry. She told me that she called our insurance company and spoke with the woman who has been helping her the past several weeks with our pre-determination requests. The lady told her that she didn't have a clue what a peer-to-peer review was and that she wasn't on this case. Wow! After being faxed our information twice in less than two weeks and talking on the phone a few times, she didn't remember anything about our situation? That was hard for Sherry to believe, so, being the fighter that she is for her CI kids, she called back and spoke to someone else. This gal was super nice. She didn't know what a peer-to-peer review was, but she was willing to help. After forty minutes of talking, Sherry said the call was dropped. Sherry called back and asked to speak with the same person but their computers had gone down and they needed to call her back. To Sherry's surprise, she got a return call. The lady continued to say that she didn't know what peer-to-peer reviews were and that they don't do them; nevertheless, at the end of the conversation, the lady took information from Sherry and said that someone would call our surgeon on Thursday between 1 and 6 pm. Surgery was scheduled for Friday morning. Elizabeth would have had to do a pre-op appointment on Thursday. Not getting an answer until Thursday afternoon was painting a pretty gloomy picture. Sherry said it didn't look like surgery would happen, but she wasn't going to cancel until Dr. Shelton left Thursday evening...just in case they said yes.
I couldn't believe they didn't know what a peer-to-peer review was. I decided to see if I could do anything by calling my favorite representative, Pedro, who has been such a HUGE help to me. He is the one who honored my request for a peer-to-peer and told me that it is something they are willing to do. I figured if I called him, he might be able to get the ball rolling.
{I have to quickly explain my appreciation for Pedro. When I called to check the status of our first attempt at a pre-determination, he is the one who answered the phone and told me it was denied. I was so disappointed and upset. The poor guy had to listen to me fight my tears as I asked him for any recommendations on my next course of action. I'm sad to say that I did not get the impression that he knew a lot. He just didn't have that confident, know-it-all voice. (I totally judged, I know!) After we made our appeal, I got a phone message from a lady telling me that they were upholding their denial. I tried calling back several times to speak with her, but she never answered. I called the regular line and Pedro answered the phone. This is terrible of me, but I remember thinking, "Man, I want to talk to someone who knows a little more." Again, he listened to me cry and question. I explained our situation and told him that I did not understand how it didn't qualify for medical necessity just because she isn't 12 months old. I wanted more of an explanation considering we had sent so much information supporting medical necessity. He was so nice and tried to help me figure out my next step. While I was on hold with him, I remembered talking to a lady in Oklahoma who does all of the insurance stuff for one of the CI surgeons there. She had told me that if a pre-determination is denied, they appeal. If that is denied, they do a peer-to-peer. Well, the Lord brought that back to my mind and I asked Pedro if they were willing to do it. He's the one that made sure they would do a peer-to-peer and told me how to proceed.}
So while I lay down with Allison for her nap, I called Pedro. I expected the call to be short and my voice monotone because I was only calling to report Sherry's news and ask if there was something he could do. (Allison actually falls asleep easier when I'm in a conversation or we watch a cute CI activation video on YouTube, which is why I chose to call him at this time. Plus, I was ready to get things going before the day got any later and she was ready for a nap.) I explained Sherry's email to Pedro. He said, "I have no idea why they (his co-workers) are so confused about this (the peer-to-peer review), but I do have some good news for you." I just thought he was going to tell me that he could get something set up with the surgeon that day. "I'm looking at a letter in front of me, and it says that there was a re-review and Elizabeth's surgery has been approved. Services can occur any time this year."
"What?!!" I shot up out of bed. "Are you kidding me?! Are you sure? I really need you to be sure?"
He was laughing, "I'm positive."
"So you are saying that she can have surgery on Friday?!"
"Yes. The approved services are good through the rest of this year. She can do it any day this year."
I was screaming, laughing, crying. I stood on my bed and then paced around the room. "I can't believe this. They haven't even talked to my surgeon. Did the lady who called me the other day speak incorrectly? Why did they do a re-review?"
Pedro was amazed himself. "I don't understand it. No, they did deny your appeal. I see the notes right here where they denied the second time. This was a re-review. I don't know what prompted it, but it is approved."
"I know Who prompted it! God is the only explanation. And I don't care why they did it. I don't need to know. I'll take the approval!" I was still shocked though. "Pedro, are you sure? I know my husband is going to want that in writing. I mean, I believe you, but can you fax it to him?"
He was so gracious and seemed to be honestly happy for us. He was very happy to fax the documents to Sherry and to Jason. He also called me just after he sent the faxes so that we knew they had been sent. That was one joyous letter to read!
I jumped out of bed and yelled at Allison as I was running down the stairs, "Alli! Sweetie! Get up! You don't have to take a nap. Come downstairs." She was still awake, but in my excitement, I ran out of the room without grabbing her. My hands were trembling as I called Jason. He couldn't believe it. We were so excited. He questioned me too, "Are you sure? Do you think he made a mistake?" I assured him that Pedro had read the letter to me and that he was going to fax it to him.
I ran around the room shouting to the Lord. The kids were smiling but looking at me like I was crazy. I just kept telling them that the Lord had been so gracious to us and that Lizzie was going to get her ears put in on Friday. We thanked the Lord and I gave Him praise.
Meanwhile, Sherry and I were emailing back and forth with fax numbers and pre-op appointment times for Thursday. She couldn't believe it and she was so excited too. The rest of the day was spent notifying family and friends, coordinating childcare for Jackson and Allison, getting things ready for the big day, and continuing to say to each other, "I can't believe this is happening." There was a lot of celebrating going on in our home, our neighbors' homes, our families' homes, and the homes of friends around the world who were praying for our sweet Lizzie. We are so grateful for those prayers!
Jason took the day off on Thursday to go to pre-op and to make the day less stressful for me so that our family could enjoy some time together before Elizabeth's surgery. It was a wonderful day. They played on the couch while I made breakfast.
All day, I kept thinking, "This is her last day to do ____ before her ears are forever changed." It probably doesn't make any sense, but I felt like a part of her was leaving. In a weird sort of way, I was grieving the goodbye of hearing aids and the routine and life that we've known nearly her whole life. Don't get me wrong, I was was super grateful. I just knew a part of her was changing and that our life was about to change. It's kind of how one may feel before a wedding or a new baby. You are ecstatic for the next step, but you have a small time of mourning for the life that you are leaving behind. I hope that makes sense.
Right after lunch, we loaded up our van and headed to Salt Lake City for Elizabeth's pre-op with Dr. Shelton. The office was full of smiles upon our entering. Everyone was excited for Lizzie and couldn't believe we got the approval, especially so quickly. Here is Lizzie waiting to find out if her ears are free and clear of any infection. (Sherry told me that she'd been thinking, "Here we've gotten this far, now please don't let her have an ear infection."
Those ears looked great! And Dr. Shelton was very excited to be doing her surgery. Here is Lizzie with Dr. Shelton and with Sherry:
We are so grateful to Sherry. Jason first met her back in December when Elizabeth was barely two months old. They talked about all kinds of insurance stuff, which helped us immensely over the next several months. She has been a blessing to so many people because she fights for kids to get ears. We love her...and our kids do too!
After Sherry read a book to the kids, we were rejoicing over the news and reminiscing the past several months when all of a sudden, Allison started choking on a peppermint. She was getting air because she was coughing, but it was stuck and not coming out. I swiped her throat, which I remember you aren't supposed to do because you can actually make the piece fall further down, but couldn't grab anything. I started to do the Heimlich Manuever, I'm sure very incorrectly, so when some of the staff came running over, I gladly let them take over. The nurse told her to spit it out. After many coughs, she finally got it up and into the nurses hand. "Got it!" Whew! That was a relief. I wasn't panicking, but it was a little scary. She cried for a while, but then she looked at Jason and asked for her other candy. When he gave it to her, she asked for her other one. Of course, that was the other one, and when Jason told her that was the other one, she started crying. She wanted to other one. Sherry was quick to figure out that Alli wanted one more because the one she choked on didn't count since she had to spit it out. Funny girl!
My kids love riding escalators. While I nursed Elizabeth and then called to make the appointments for her first two mappings, Jason went up and down and up and down. He's such a patient and fun-loving daddy.
We grabbed Pei Wei on the way home, my kids' favorite, and then we celebrated with cheesecake. I started feeling bad on the way home from the surgeon's office. The later it got, the worse I felt and the more worried I became that I was getting the flu. Perfect timing, right?! We all went to bed early that night. I set my alarm for 3:15 because I wanted to nurse Lizzie one last time before 3:30, the last time she was allowed to have anything in her tummy. She actually woke quite a few times before that...at midnight, 2:00 and then again at 3:00. That's unusual, but I took advantage of each waking to fill her tummy. After she finished eating at 3:10, I put her back to sleep and then took a long hot shower because I felt terrible. I was hurting from head to toe. I was worried about going to the hospital and getting other people sick, but there was no way I was going to leave my baby.
We had to leave our house at 5:00 because Elizabeth's surgery was at 7:00. Our wonderful neighbor who also happens to be the children's ministry director at our church, came over early that morning to take the first shift in taking care of Jackson and Allison. (Another fabulous neighbor, who I have grown to love so much, was watching them during the day.) Just before she got to our house, Elizabeth woke. Jason got her. I'm sure she was wondering where I was and why she wasn't being nursed and put back to bed. I tried to get Jason to do as much as possible with her because I wanted to distract her from thinking about nursing. She screamed when he tried to change her diaper, but eventually she calmed down and then she fussed very little. I remember her looking over at Jason with her hand on the side of her head and tilting her head to the side as if to say, "Sleep." We aren't sure if she was signing it or not, but it sure looked like it. Other than a few motions that we think mean "nurse", she hasn't really started signing yet.
We prayed together and then headed out the door. We were both still in shock that our baby girl was going to have surgery in only a couple of hours. We got there right on time. While we waited for her pre-op stuff, we played in the waiting room and enjoyed every smile and kiss we could give.
When they took us back, she was weighed 15 lbs. 2 oz. I didn't get her height. They took all of her vitals and I dressed her in her hospital jammies. She was doing really well up until this point. That was the first time she started to fuss. She didn't cry much, but I could tell she was getting tired and wanting to nurse. When I picked her up, I felt something wet on my stomach. I looked down and didn't see anything on my shirt. I couldn't figure out where the wet had come from. I felt Elizabeth. Nothing was wet on her. Then it clicked. I'm leaking and I forgot my breast pads. Awesome! You would think the hospital had some, right? Nope! The nurse offered me tissues. I gratefully took them but I knew there was no way they were going to hold back the abundance of milk that I had. I was trying to figure out what I was going to do, and while we were waiting to meet the anesthesiologist, I got an idea. I borrowed scissors from one of the nurses and cut one of Elizabeth's diapers into four breast pads. They were thick, but they worked great!
We put Lizzie in a bed so that she could sit and play. This kept her preoccupied and distracted her from wanting to nurse.
We just kept thanking the Lord that she was getting this surgery and I kept praying for the Lord to protect her and to be the hands and minds of the surgeon and the anesthesiologist. We are so blessed by this child, and I knew in my heart that He would bring her through surgery just beautifully.
Dr. First, her anesthesiologist, came back to meet us, tell us what he would be doing, and to answer any questions we had. Then we walked with him back to the doors leading to the OR. Jason was carrying Lizzie because she couldn't be near me without crying. When we stopped to kiss her and give her to Dr. First, she looked at me with longing eyes and reached out for me. We tried to make it as quick as possible. I smiled at her and signed and said, "I love you, baby!" Jason quickly gave her to Dr. First, and he went into the OR with her crying in his arms at 07:27. I felt so bad. I'm sure she was wondering why I wasn't feeding her, but I took comfort in knowing that she'd be asleep in less than two minutes.
We walked down the hall, missing our baby girl terribly but putting her in the hands of the One whose love is far greater than even ours. The entire time she was in surgery, I kept thinking of this famous picture. I knew who was running the show in that operating room...and it wasn't Dr. Shelton.
Jason and I enjoyed a good breakfast and lots of time to talk. I had actually been looking forward to that time with my best friend. I miss him so much. Kids keep us pretty busy these days so I cherish every moment I get to be with him. We talked about all sorts of stuff, including our kids, but I made it a point to discuss things other than our children because we do kids 24/7 and this was a rare and cherished time for two people who fell in love 9 years before kids came into our lives. I want to make sure that we continue sharing our likes and dislikes, our interests, our joys and sorrows, our hopes and our fears because it's too easy for the parenting role to completely overtake and overshadow the lover/best friend role.
Dr. Shelton came back to see us at 10:30. We were shocked to see him so early but completely thrilled. He finished the surgery in 3 hours! He was all smiles. He said that he was very pleased with how well the surgery went. Elizabeth did very well, and all of the electrodes were placed perfectly so that they made contact with the nerve endings. Praise the Lord!!! We hung on to every word he said. It was so great to listen to him tell us how great he felt about the surgery, a surgery that he's been performing for over 15 years.
As soon as Lizzie woke, they would call me back. And once they got a little room ready in the post-op area, Jason could go back and meet us. When they came to get me, I leaped out of my chair. I couldn't wait to see her. As soon as the doors opened, I knew she was there. I could hear her faint cry. It sounded like a hoarse moan. The nurse was holding her and giving her morphine as I walked up. She had pants on but not her top. Her head was wrapped in the signature Princess Leia wrapping that all the bilateral CI kids get. Her eyes were closed shut. The nurse said she was screaming when she woke from surgery. I wish I had been there to take her and nurse her immediately. As soon as Catherine, the nurse, was done, she gave her to me and I began nursing her. I was so happy to hold her, kiss her, smell her, touch her, and tell her how loved she is. She was so out of it. She cried and kept trying to put her mouth around my breast, but it took her a while to latch and start feeding. She fell asleep very soon after I took her. That's when I snapped this photo to text to Jason because I knew he was dying to see her, and I would not have wanted to be the one waiting in the other room.
They got us back to another room in less than thirty minutes, and Jason got to come back and see his princess. We left her asleep in the bed with warm blankets over her. She seemed to be the most comfortable this way. I took this photo just before 1:00 in the afternoon.
At first, it was hard for me to tell if she was in pain. She would be sleeping soundly and then all of a sudden start crying. It was a pitiful moaning sound and she never opened her eyes. I would offer my breast immediately, and each time, she would take it and nurse until she fell back to sleep. I laid her on a pillow on my lap. I felt like it was the most comfortable for her head while she nursed and slept. She did really well as long as she wasn't moved. She did not want to be moved. If I moved to readjust, she got upset, and I tried very hard not to move, but my body was hurting all over.
We had wonderful nurses! Hillary was our first nurse. She was so attentive and very caring. She offered to bring my a hospital bed so that Elizabeth and I could sleep together...as opposed to having me sleep in the fold-out chair or the glider. I was so impressed by her sensitivity and extremely grateful to have a bed to sleep in. This made nursing a lot more comfortable for both me and Lizzie.
Jason had to leave around 4 o'clock to get Jackson and Allison. I was hoping she was going to open her eyes before he left, but she never did. I took this picture of her right after he left.
Here is a photo of the two nurses who took care of us. Hillary is on the right. She was there until 9 o'clock Friday night. Missy is on the left and she had the night shift. They were both wonderful!
Around 18:30, Elizabeth finally woke up and opened her eyes. I was so excited to see her! She wasn't smiley and happy, but she was content. She even sat in bed with me and played with some of her toys. The bandage on her head was driving her crazy. She constantly rubbed her eyes. Initially, I thought her eyes were bothering her, but then I realized it was the bandage. It was sitting really low on her forehead. Later that night, I asked Missy to cut it so that it wasn't so close to her eyes. Here she is at 18:30...rubbing those eyes!
She wasn't awake too long before she was back to sleep again. I ran downstairs to grab some dinner and then brought it back up to our little room. I had to force myself to eat because I wasn't very hungry, but I wasn't sure if she'd be up all night and I wouldn't have a way to get food if I got hungry later. As soon as I finished eating, I got in bed with her and tried to sleep. I was so tired, but my body was aching, which made it difficult to fall asleep. I was so grateful to be sleeping next to my baby. Hearing her breathe and feeling her warm little body made my rest much more peaceful. I love sleeping with my babies close at my side.
Around midnight, Missy came in to check her vitals. Amazingly, I slept through all of it...and Lizzie was right at my side. It was also time for her to have Tylenol, so Missy gave it to her. The strong taste of the Tylenol woke her from her sleepy state, which also woke me. I held her, nursed her and talked to her. I could tell that she was tired by the way she was fussing, but she wouldn't go back to sleep. She kept rubbing her eyes and her nose CONSTANTLY. I paged Missy to see if there was something I could do. She gave me a washcloth so that I could wipe her face. We also cut the bandage so that it moved farther up her forehead. She continued to rub her face but not as bad. She was still fussy. Then, her nose began to bleed. I paged Missy again. (I think I had to page her three times during this midnight hour.) Nosebleeds are perfectly normal after this surgery. Once her nose stopped bleeding...and it wasn't much at all...she fell asleep.
She slept until 05;00. It was wonderful for me! I woke feeling so much better. My body aches were nearly gone. We played together, walked around the room together, and rocked in the glider. I wouldn't say she was 100%, but she was alert, content, and doing her normal things. She had her first post-surgery poop, which was so bad I had to change her clothes.
Just before the doctor came to see her at 07:30, she threw up all over me. Fortunately, I had not changed clothes and she managed to keep it off of the clothes I had just dressed her in. It came out of nowhere and it didn't seem to bother her. I'm sure she must have felt better though. While I was in the bathroom changing, the resident surgeon came in and removed her bandages. Oh, happy day! I was surprised they removed the bandages so soon, but I know Elizabeth was thankful. No more bandages!
While we waited for the discharge instructions, I rocked her in the glider until she fell asleep. It was glorious! She never lets me rock her to sleep. She prefers to be put in bed to fall asleep on her own (or, when she was younger, put in her swing). She was lying on me facing away from me...she has never liked having her head buried in my chest or on my shoulder...and it was so wonderful just holding her and rocking her.
Jason and the kids arrived after 8 o'clock. Miss Lizzie Mae was all smiles when she saw them! Earlier that morning, I could tell that she was ready to leave. I'm sure she was wondering where she was and where they were. They were super excited to see her. All three of them were outfitted in Avengers t-shirts. It was quite a sight.
We left the hospital at 9 o'clock. We were so grateful to be taking home a healthy, happy baby girl with new ears soon to be awakened to the beautiful sounds of God's creation.
Jackson had his Star Wars gun and his Anakin Skywalker lightsaber. (While he and I had waited at the pharmacy together, he told me that he would use his weapons to blast through the glass to get our medicine since they were taking so long :-) The joy of boys! {And they really did take a long time.})
This is what her incisions look like on both sides. My thumb is on the internal device and marks the spot where the external coil will stick to her head via a magnet.
Cochlear Americas gave her this koala bear. I think the koala is like their mascot. My kids have a coloring book all about Kaci the koala getting her implants. These white things on the koala are what Elizabeth will have on her head on June 21st and every day thereafter. The circular part is the coil. It sticks to the internal device that is in her head with a magnet. The two things behind the ears are processors. Those will go behind her ear like a hearing aid...only we won't have to have ear molds that stick in her ears. Yay!!!
As the day went on, Elizabeth was more and more herself.
On day two, she threw up a little in the morning. It was a lot like the day before - unpredictable and not bothersome. She laughed a lot and played a lot.
But on day three, she was back to her normal self in every way.
On June 21st, Elizabeth will hear for the first time in her life. Our parents are coming in town for the big day and we can hardly wait. We feel so blessed that she's been offered a chance to hear. We feel so honored to parent her. We feel so grateful to be chosen of the Lord for this special task. And we want to praise our great God and King who is good all the time and no matter what the circumstance. We believe that Elizabeth (as well as our other children) is a gift from Him. We believe these implants are a gift from Him. BUT, if He had chosen to keep Elizabeth's ears closed to sound, we would still believe that He is good!
