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...

5 comments:

tammy said...

Thinking of you all on this special day for Lucas!! You all are in our prayers!

Laura's medical journey said...

good luck with the surgery!!! Hope it goes well!

Faith said...

Hoping all went well today for Lucas and Mom & Dad!

Your post was beautifully stated and oh, so accurate! We, too, were told Severe hearing loss and I remember thinking that it must be so much better than profound hearing loss, she must not be deaf, then, and hearing aids will work. Meanwhile she was only severe in one ear and profound in the other. I had to put that together with the audiogram paper and the speech banana charet myself. So peculiar how they 'ease you down' and you go home putting the pieces together over the next several weeks.

Anyway, I will stop rambling since this is about YOU not me! ;-) And just reiterate....We are praying for you all! Keep us posted!

leahlefler said...

Good luck with surgery and here's to a fast recovery! Soon you will be saying happy birthday to Lucas's ears.

Celeste said...

Congratulations on a successful surgery, the hard part is over! Good Luck with your big day next week. It's all uphill from here! :)