Wednesday, December 31, 2008

Reflections on 2008

On this, the last day of 2008, I thought it appropriate to make some reflections on the year.

We brought Lucas home from the hospital a year ago today! After 8 helpless days in the NICU, we could finally be together as a family for the first time. The NICU experience is one that I hope to never have to go through again. Lucas's stay was short, but nonetheless difficult. It's tough when you have no control over your baby, and all you have is basically visitor privileges. New Year's Eve 2007 was a joyful day indeed!

You always hear people say that a baby changes things, and you think "yeah, yeah, yeah, I know." Well, you really don't know until you have that baby, how much things really change. Priorities change, feelings change, lifestyles change. I never really understood the feelings of love for a child before I had one. It's unique, strong, binding. It's like no other kind of love. Everything changed the moment I gave birth. Life became about all about him, and I wouldn't change it for the world.

When I was pregnant, I remember being anxious for the first ultrasound, because I knew that in addition to determining the gender of the baby (which we weren't successful in finding out the first time anyway), any red flags for the baby's health concerns would be raised. I remember asking the technician... "so my baby has 10 fingers and 10 toes?" Yes, she replied. I was relieved, as if that was an indication that my baby would be healthy. WRONG! I was so oblivious to the fact that anything could be wrong with my child, least of all his hearing! We did everything right - he was perfectly planned, I stayed away from everything that I thought could be potentially harmful to him... I didn't drink any diet soda (because of the aspartame), I wouldn't even pump my own gas because I was afraid of the fumes, I took all of my vitamins as prescribed, ate salmon at least once a week, had excellent prenatal care... very textbook. And 5 weeks early my water broke, and my baby was born with more than one health concern. Yeah, things definitely changed.

January was fun. I used to take a picture every day of Lucas to send to Nate at school. I think I took 180 pictures that month alone. But that month, we had 3 follow-up specialist appointments that caused a lot of anxiety.

February was a disaster. It was then that we were told that Lucas was deaf. It was then that I began to feel incredible amounts of guilt, wondering what I had done wrong. It was then that I could not fathom returning to work in April. I spent so much time crying. I don't think that Valentine's Day will ever be the same.

In March, Lucas (who had been completely healthy, other than his congenital issues up until that point), developed RSV and spent 5 days in the hospital. More guilt, lots more guilt. Early Intervention also came out to the house, and we established a great relationship with them and Lucas's therapists. I am so thankful for everything that EI has done! It has been a terrific experience. Lucas also got his first pair of hearing aids.

On April 4, I returned to work after 15 weeks. I was miserable. It was really, really, really tough on me (and still is to this day!). Again, pre-baby, I thought it would be no big deal. Boy was I wrong.

May is kind of blurry. I went to work, and returned home as quickly as possible to spend time with Lucas. I was counting down the days until June.

In June, I began 10 weeks of summer vacation and time with my baby again! Lucas spent another 5 days in the hospital, that should have easily been prevented, but we won't go there. He only had a summer virus, but the doctors had suspected meningitis, and it was better to be safe than sorry. I started this blog in June, and met so many incredible people through blog networks, that have taught me so much about hearing loss. I am forever grateful to my blog friends.

July was fun! We spent a lot of time at the pool! Nate was in grad school, so we didn't get to spend that much time with him, but life was pretty carefree for the first time in 6 months. I think that I finally lost the guilt of Lucas's hearing loss being my fault. That was really important. Lucas had a sedated MRI in Lancaster, although it was for nothing. It had to be repeated at the end of August, because they didn't get the film they were supposed to have. Lesson learned - just go to CHOP, period.

In August we went to the beach in the Outer Banks of NC. I really enjoyed my week there, I still look back on it fondly. I think it was an escape from all the crap I had to deal with at home, even if I wasn't really away from it, it certainly felt like it. At the end of August, I returned to work again with the beginning of the new school year. I thought it would be easier than in April. Nope. We also began the CI candidacy process. Lucas had his second sedated MRI. The good news was... from a physiological standpoint, he was a candidate. It was music to my ears.

September came and went with one very exciting event... Lucas signed milk at 9 months and bridged the communication gap. It was my happiest moment of the year! (Don't forget he was actually born in 2007, so that doesn't count for the year.)

October came and went. November came and went. Those months were pretty uneventful - there wasn't a lot of extra time to do much. Working full time is rather time consuming. All extra time was devoted to Lucas, and to his therapies. We worked 6 hours a month with them. But without access to any sound at all, we were just kind of waiting. Thanksgiving was well spent with family and friends and a week of vacation.

December was an exciting month! I love Christmastime! We also had a birthday party, a first birthday, Christmas and CI surgery.

It was a crazy year indeed. It was the most exciting, joyful, and sorrowful year of my life, all at the same time. Life has changed for the better. We have the most beautiful little boy, who keeps us challenged and brings us incredible amounts of joy. Life will never be the same, but I wouldn't want it any other way. Could it have been worse? Absolutely. Could it have been better? At times, maybe.

I look ahead to 2009 with lots of hope and optimism. I look forward to 8 months away from my job to help my baby learn to listen with his CI. I hope that by this time next year, he will have a second CI, have seen some success with the first, and he will have said "Mommy". I look forward to the positive change that a new administration will bring to our country and a hopeful beginning to the end of the war in Iraq.

Wishing you and yours a happy New Year and a prosperous 2009!

Saturday, December 27, 2008

Bionic Baby Boy

Lucas's right ear was successfully implanted yesterday at CHOP. It was a long day, but it went really well and we're glad it's over! We left the house at4:15 AM and made it there in 1 hour and 22 minutes, impressive. We were actually so early that they wouldn't let us into the elevators! Better to be early than late though. Everything went smoothly, and they took him back for surgery around 7:30. They gave him "giggle juice" before surgery to decrease his separation anxiety (which has definitely increased over the past few months). It made him pretty loopy and giggly, but he didn't mind being taken from me (I think it was worse for Mommy). He had to wear a purple "boy dress"... I think I need to invent something better for the hospital... They also stamped his right ear for surgery, to make sure they implanted the correct ear!!!

Surgery started around 8, Nate and I went to surgery waiting, then I pumped and went to Au Bon Pain for breakfast, and returned in time for our first update. It's sooooo nice - they have nurses who go around to the operaring rooms hourly to give parents updates. I guess she wasn't allowed into Lucas's OR though because of the highlly sterile nature of the implant. But she called in and everything was going fine.

Shortly thereafter, the CI program social worker came to chat with us. Then the CI audiologist brought us the stuffed Cochlear koala (with a toy CI) and news that the surgeon had gotten a full electrode insertion and the implant was working well from his perspective. It's nice that they always test the implant before finishing up. We also chose a silver processor with a beige coil for him.

It will look like this, except that the very top round part will be beige, to blend in with his hair. Soon after the audi left, Lucas's surgeon came to tell us everything went well. About 15 minutes later, we got to go see him. He was sleeping and cranky, and I held him for about 2 hours while he slept on and off.

Lucas was discharged around noon and we were back in Lancaster by 2 or so. It was a pretty long night... Lucas and I slept on the couch together, because he wouldn't let me put him down. He also threw up twice from the anesthesia, surgery to the head, or a combination of both. We've kept him comfortable with pain medications and he has slept a lot in the past 24 hours. He's actually sleeping in my arms as I type right now. He really rallied today around noon, when my parents came to visit, playing on the floor. We got a little smile last night from Tickle Me Elmo, and a big smile later this morning when he saw one of our fluffy cats.

I took a picture of him with Kaci the koala, who also has a bandage on its head, just like Lucas!

We took the bandage off around noon. Surprisingly, he hadn't tried to pull it off before then. The nurses seemed to think it would be off before we left the hospital yesterday. There are no sutures, but rather dermabond holding the incision closed, which is nice, so that he doesn't pick at it, and no bacteria can get into it. He'll be on an oral antibiotic for the next 10 days to help prevent infection. Here's what the incision looks like. (And really messy hair, poor guy!)

It really has been a good experience, much better than anticipated. The hospital is top notch and took very good care of him, I am very pleased. I also think that he'll be back to himself tomorrow. Yay for a pretty quick recovery! Good news too - activation is 2 weeks earlier than expected... January 9. We are now combining our equipment orientation with the activation on the same day. Thanks Faith!!!!!!! Here's to our bionic baby boy. There's no looking back!

Thursday, December 25, 2008

CI surgery tomorrow! Oh, and Merry Christmas!

Please pray for Lucas's CI surgery tomorrow. Our arrival time in Philadelphia is 6:15 AM, which has us leaving Lancaster at about 4. AHHHH! I just can't wait until tomorrow is over. I'm so nervous. Lucas had surgery in October, and my feelings of nervousness then were nothing compared to now. I think I feel really torn. I know we're making the right decision, but it doesn't make it any easier right now, knowing that my baby will have surgery tomorrow.

Merry Christmas! One year ago today, I was discharged from the hospital without my baby, who spent 6 more days in the NICU after being born early. That was really tough on us, and I wouldn't wish it on my worst enemy (if I had any). I felt guilty about having delivered 5 weeks early, as if it were my fault, and then he had to be hospitalized for 8 days. While in the NICU, they kept giving us bad news too: a heart murmur, a failed newborn hearing screen (3 times), among other things. It had never even occured to me that his hearing could be a problem. We left the hospital with 3 follow-up specialist appointments in January, and a lot of despair. We weren't that worried about his hearing, because they told us it was probably fluid or something (sound familiar?). We were much more worried about his heart, because the neonatologist scared the heck out of us in the hospital, telling us that our baby could die soon! I'll never forget the meeting with that doctor, and how incredibly sick I felt after talking to him. He should NOT be allowed to work with NICU parents. I never would have predicted a year ago that his heart condition would be manageable, and his hearing loss significant.

In January the audi got no response on any level from him, but told us he was too little to get accurate results, and that we should return in another month. On February 12, we returned. It was a snowy day, and Nate came home from school early because of the weather, so we headed to the appointment early. It was on that day that we found out Lucas was deaf. They (of course) called it "severe-profound hearing loss" but never called him deaf. I think for a while, I thought (and secretly hoped) that that level of hearing loss was in a different category than actually being deaf, but I soon came to realize it was one in the same, just some fancy politically correct term. They then referred us to CHOP, because of the CI program. That was also the first time we'd every really heard the buzz word, CI. Look where we are now.

This Christmas, I'm just really glad to have a beautifully happy, healthy baby boy. I am so in love with this kid! I never knew that I could feel love like this! He was our Christmas gift last year, and this year, we are giving him the gift of hearing. Isn't that amazing? Now, we just have to get through tomorrow...

Sunday, December 21, 2008

1st birthday party

Yesterday was Lucas's wonderful 1st birthday party. I'm really quite pleased with how it went. I wanted it to be special, unique, memorable, and I believe that it was. We had mostly family and a few close friends, about 25 people. The video is of everyone signing "Happy Birthday" to Lucas while we sang. It was very emotional for me. On one hand, it was really cool that everyone was willing to learn and sign it, but on the other hand, Lucas had no idea that we were actually singing to him. In fact, he has no idea what singing is. Next year will be a different story, I hope! The video is a little long... I just didn't know how to shorten it. It will probably get boring after about 1 minute. The rest of the time is him slowly digging into his cake. He puts everything else on God's green earth in his mouth right away, but was quite dainty with the cake. Go figure. It was almost like it wasn't as much fun to get into, because he was allowed to get into it!!! In the end, he still got pretty messy, but it just took him a while. I think he just enjoyed the texture too. Don't forget to turn the playlist off first, before you watch the video.

Lucas got some very nice gifts... thanks everyone! We always seem to have therapy in the back of our minds, and Lucas got some toys that will complement his work with his speech therapist quite well. His Oma (my Mom) bought him a bunch of Snappy Sound books, based on the recommendation of Lucas's speech therapist. They're really fun! He also got a bunch of Little People toys, also based on her recommendation. She said that they provide lots of opportunity for descriptions and narration. So, we're set! Now we just need to turn on that hearing. 5 days until surgery, but whose counting?

This is a picture of the really cool lamb cake that my Nanny made for him to dig into! She made one for me on my 1st birthday too. It will be a tradition.

This is what we were left with!!! The long sleeved "shirt" bib worked really well!

The theme was "The Big 1"! I had these pictures printed in wallet sizes and gave them out as favors. They were a big hit! Lucas's birthday is on Tuesday (the 23rd). What a week we have ahead of us! I'm hoping and praying that surgery on Friday goes as well as his birthday party did!

Tuesday, December 16, 2008

10 days and counting...

Ahhhh... only 10 days left until surgery. I'm very excited, yet also very anxious and nervous for surgery. Life is really hectic right now too! I can't seem to stay on top of my school work, I'm trying to plan the *perfect* 1st birthday bash, and I'm trying to get ready for Christmas! Oh yeah, and I have a baby to take care of. I'm hoping for a 2-hour delay tomorrow to catch up a bit...

I called CHOP today to request the make, model and color for Lucas's car, I mean ear. I'm still not totally convinced, but have chosen the beige/skin-toned Cochlear Freedom. Blue would be fun, but maybe not when he's 15? I saw on the website that you can buy stickers to jazz it up too, so there's an option. I've been getting a lot of questions lately from friends and family about what it will look like, whether you'll be able to see the implant, whether it will need to be replaced as he grows, etc., so I'm going to make some educational posts. I've gotten many resources from other blogs, so thanks. Check out this cochlear implant explanation. It has a very comprehensive explanation about how the CI works.

Well, enjoy your own countdown to Christmas, as I look forward to a birthday party, Christmas, and the gift of hearing for my baby boy.