Just 3 short months after her CIs were activated, Lily has started babbling. Of course I thought this day would never come, but here it is. So far she is just saying "yah, yah, yah" and "mah, mah, mah." It seems to be just random babbling with no meaning at this point. However, at Thanksgiving dinner my aunt asked if she was talking. I told her that Lily was babbling a little. So my aunt starting saying "mah, mah, mah" to her and Lily looked at me. She did that twice. So maybe that shows comprehension of that sound also. It is so amazing, the little things that make me jump for joy. If Lily had been a hearing baby I'm sure I would have taken for granted the first time she babbled. So much to be thankful for.
We are now using headbands that we found out about here from Taylor's mom. We LOVE these! The headbands hold the CIs behind Lily's ear without bending them. No more velcro dots! I added a little flower alligator clip to the headbands for fun. If anyone else is interested in these headbands, email me for the contact information. The woman who makes these is wonderful. Here are a few pictures of Lily wearing the headbands.
Quick update on Lily's progress:
Lily amazes us everyday. A few of the things she is doing now: dancing to music without seeing anyone else do it, saying "uh uh uh" for up up up, says "uh e" for "uh oh" with the correct inflection when she drops something, says "mmm" for mommy, milk, more and "moo" (when she sees a picture of a cow), says "ahhhhhh" every time she sees a picture of an airplane, gives a kiss when we ask for one (without us puckering our lips), claps her hands when she HEARS us sing "Pat-a-Cake" (no modeling from us), waves bye-bye when she hears the phrase (she even waves when we tell her bye-bye on speaker phone).
She's doing many more things, but I just have time for a quick update tonight. We're so thankful for the miracle of cochlear implants.
Lily has been doing wonderfully with her CIs. She hardly ever tries to take them off, which we are sooooo happy about. She leaves them alone much better than she did her hearing aids. The only time she really tries to take them off is when she is trying to get our attention (because she knows she'll get it immediately) or when she is tired. For the first two weeks she wore the CIs with the babyworn option (the BTE controllers clipped to her back). She is wearing the babyworn option in the top picture. We didn't use the snugfits because we didn't like the way it was bending her ear down. So we put a velcro dot on her processors and a velcro dot on her headbands and we just stuck the processors to the headbands. Since none of the weight of the CIs is on her ears she can wear the BTE controller attached to the processor (all one piece) and her ear still doesn't get bent. We love this way because now we don't have to mess with cables hanging everywhere when we need to change her clothes. The next pictures show how Lily is currently wearing her CIs.
We had our first sound booth test since Lily's CIs were activated. She did great! She responded to sound at 20dB across all frequencies. Yay Lily! We think this is awesome for having been activated only 3 weeks ago. It was so cool to watch her localize as the sound switched speakers.
Another big event for Lily this week is taking her first steps. She has taken one or two and a few times, up to four steps. Today she walked a short distance across the room, taking about eight steps. Lily is growing up so fast and so much is changing for her right now. The world is just beginning to open up for her.
Now for bad news. . .insurance. We already knew our insurance was denying her claim for the surgery since she is under 12 months. Now they are also denying our audiology appointments because, in their words, "Cochlear implants for members less than 12 months of age is considered investigational and therefore diagnostic analysis of bilateral cochlear implants is being denied as investigational." . Drew's mom was worried this might happen to us. However, I thought (and still think) it best for Lily to have access to sound as soon as possible. This will just be another battle between the insurance company and me. Insurance won last time. I'm hoping they don't win this time. We're going to appeal the decision and our doctor and audiologist are going to conduct a peer consultation. If we don't get anywhere with that, Cochlear's Insurance Support will help us file a second appeal. Wish us luck!
Lily signed her first word on Tuesday. She signed more when she wanted me to play her gobbling turkey I got her that day. She did it about 5 times and then wouldn't do it anymore that day. I couldn't get her to sign it the rest of the week either so I thought maybe she wasn't signing but just clapping since that is a fairly new thing she has been doing. So today when I was feeding her, I said "Mmmmmore," before giving her another bite (we're working on the mmmm sound). After hearing me say "mmmmore" she signed it! I didn't even sign it. Yay for Lily! I have been saying it and signing it all week though. She continued to sign more as well as say "mmmmm" during the rest of lunch. It figures that just as we're ready to stop signing and focus completely on oral communication, she starts signing. This makes me question our decision to be strictly oral. If she can communicate with us now, I want her to be able to. We may continue using a few signs for basic communication. Signs like more, eat, drink, hurt, milk.
Lily definitely wants to communicate with us. She has been hearing for a little less than 2 weeks and she is already imitating the ahhh sound and the mmmm sound after she hears me say it. Our journey has just begun, and we are so excited for the new things Lily will learn and do each day.
Lily's CIs were activated yesterday. Yesterday was really the first time she has heard anything. We have been waiting for this day since December 4th, when we first found out our baby girl is deaf. She didn't respond to my voice so much, but she did seem to respond to her daddy's voice. It was really exciting!
The audiologists said Lily did really well. They told us that most babies cry or are irritated, but not Lily. She sat really still when she was listening to the series of beeps from the computer. When she heard her daddy's voice, she turned to look at him and smiled. It is so precious.
The sounds that Lily is hearing right now are really soft sounds. We will change the program each day so that she will slowly hear more and more. We don't want to overwhelm her by throwing her into this noisy world after she's lived her life in complete silence for 9 months.
Here are a few pictures from Lily's "Hearing Birthday." You can see what the external equipment looks like. She has brown coils (the magnets on her head) and pink processors (the piece she wears behind her ear). The pink things clipped to her back are the controllers that allow us to change the programs and adjust the volume and sensitivity. This will eventually connect to the processors and she will wear it all behind her ear once her ear is big enough.
She has done a pretty good job of leaving everything on. Sometimes she'll grab at the processors so we just put her pilot cap back on and she leaves everything alone. The pilot caps have been the best investment for us. She wears the white Hanna Andersson pilot cap and the white SilkaWear cap. Since the caps are white, we can still see the blinking red lights through the material of the cap. The blinking lights let us know if sound is getting to the microphones on her processors. If the lights blink slowly, she isn't hearing; if they blink quickly, she is hearing.
Lily tolerated Program 2 just fine today, so tomorrow we'll turn her up to Program 3 and she'll be hearing a few more sounds than she could hear today. Her journey into the hearing world has just begun!
When I got home from work and checked out Lily's incisions on her magnet sites, they looked much better. One side is still just a little more red than the other side. We're going to have her ENT check it out tomorrow just to be on the safe side. He'll probably think I'm crazy, but I just want to make sure she is healing like she should.
The steri-strips finally came all the way off today. We took some pictures of the incisions.
Now that the swelling is completely down, you can really see the magnets under her skin. This is a picture of what is implanted under her skin on both sides of her head.
Can you see the outline of the magnet in these pictures?
The steri-strips are starting to come off and I noticed Lily's left ear magnet site is still looking pretty red. It looks like it could possibly be infected at the end of the incision. Maybe this is normal. . . I don't really know what to expect. Her left ear magnet site is more red than her right side. Any experienced CI mommies see this on your kids? I emailed the doctor to see what he thinks. We appreciate your prayers.
Just a quick post to update on Lily. She is feeling much better. No more dizziness or vomiting. Thanks for your prayers. I went back to school today, so I've been pretty busy. Lily's activation day is in one week! My baby girl will hear her first sounds in seven days. . . so exciting! I want to post some more pictures of the magnets under her skin and her incisions. I'll post again soon.
Surprisingly, Lily left her head bandage on for 3 days. So today we took the bandage off. She sat so still while I was unwrapping the gauze. It probably felt good to get that big heavy bandage off. As soon as it was all the way off, she started grabbing at her ears so we had to put the pilot cap back on. You can see the bump under her skin where the magnets are. I don't think it's too bad, but Dr. Kang said it is still swollen. Once the swelling goes down, he said the bumps will be more noticeable.
Lily still isn't quite back to herself yet. She is fine during the day, but in the evenings she gets dizzy and sick. The past 2 nights her eyes move back and forth quickly (like she is dizzy) when I lay her down to change her diaper. Then shortly afterward she vomits. Her balance is also much worse than before surgery. When she is sitting and she turns to look at me, she looses her balance and falls over. She is also much more unsteady when crawling and pulling up to stand than before surgery. We took her back to the doctor today to make sure there are no complications. Dr. Kang is a little concerned about the dizzy eye movement. He told us to just watch her to see if it keeps happening. We have another appointment with him next Thursday. Please continue to keep her in your prayers.
First bath after surgery
Taking the bandage off
Unwrapping the gauze
The bandage is finally off! Look how tight it was on there.
One of the incisions (still covered with a steri-strip). Can you see the magnet under her skin?
Lily's surgery went very well yesterday despite my nerves. I started getting a nervous stomach Monday night and it lasted all day yesterday. It was hard to watch my baby cry and hit my chest because she was hungry and not be able to feed her. She didn't understand. Watching the surgery assistant wheel my baby away from me into the OR was the hardest thing I've ever had to do. That's when the tears really came. Once surgery got started I did pretty well. We had friends and family waiting with us. They really helped distract me from thinking of Lily in surgery all day. We played cards and talked and before I knew it, the audiologist came out to tell us that one ear was done and that all 22 electrodes were working! Yay! A little over an hour later she came back out to tell us the second ear was done and all 22 electrodes were working! It was a 4 hour surgery, but it really seemed to go fast with all the distractions we had around us. I'm so glad they were there; otherwise I would've worried and had an upset stomach for 4 hours. Dr. Kang told us we would see the outline of the magnets in her head because the bone of her skull is thin since she is a baby. We haven't seen it yet since the bandages are still on. If she leaves the bandages alone, we'll leave them on until Friday. I'll probably post more pictures then. There are also more pictures of surgery day here. Thanks to everyone who was thinking and praying for us.
Lily with her surgeron, Dr. Kang
Lily's daddy and I holding Lily's CI koalas while we waited for her to come out of surgery
Just waking up after surgery
Getting ready to go home, 2 hours after sugery
Our family at home after surgery
Matching bracelets for the girls that waited for Lily to come out of sugery: Me, Lily (hers is on her ankle), my mom, my cousin Courntey, and my girlfriend Laura
Lily's bilateral CI surgery is tomorrow. We have to be at the hospital at 8:00 a.m. and surgery is supposed to start at 10:00. I've been looking forward to this all summer and now, suddenly, I'm feeling scared and nervous. Yes, I want my baby to hear and I'm excited for that, but I wish she didn't have to have surgery. So say a prayer for Lily tonight. I'll post surgery pics as soon as I can. Also, Lily will NOT be able to hear tomorrow. The incisions behind her ears need to heal before she can wear the processors behind her ears. So she won't be able to hear for about 3 more weeks. Her activation day is scheduled for August 31.
I've been taking Lily swimming at least once a week this summer so she'll get used to the water and, hopefully, not be afraid of it. This week was rainy and cloudy so Lily and I went to an indoor waterpark with Lily's Grandmommy Cindy and friends Jackie, Sam, and Sarah. It was the first time Lily got in a baby pool where she could crawl around in a few inches of water. She loved it! We'll probably try to go swimming a few more times before her surgery. . . just a few weeks away.
Lily was born with profound bilateral sensorineural hearing loss (deaf in both ears) to two hearing parents. She is now learning to listen and hear with the miraculous technology of cochlear implants. This blog was created to update our family and friends on her journey to the hearing world.