Today we met with the cochlear implant coordinator, one of the surgeons, and two other doctors to discuss Lil Bill and the possibility of him getting the implants. Billy, Lil Bill, and I walked into the room and all four of the cochlear implant team members were sitting in there, waiting for us, we were not expecting it to be so many people.
The appointment was very informative. As you may or may not know there is controversy about the cochlear implants. Both sides have very strong opinions on if they are right or wrong. So I was a little nervous going into this appointment, meeting with the cochlear implant team, that we would receive bias information. I was pleasantly surprised when that was not the case.
The surgeon asked us what our goals were for Lil Bill. He talked to us about ASL and the culture of the deaf and we explored that option. He then talked to us about the implants and what that would be for Lil Bill. We discussed our fears of relying on only ASL. Due to Lil Bill's spastic quadriplegic CP, he is very tight. His arms are more affected than his legs. We believe relying on signing as a main means of communication has the potential to be very difficult for him. That was initially our motivating factor for wanting the implants. It was not because I didn't feel like learning ASL and adapting to my son, because we are still open to learning it. I just think every family's situation is so different. Some families may chose ASL and not want to get implants, and I think it is great for them, that is their choice. However for our family, we think what would be best for us is to get Lil Bill the implants. And that is our choice and we are OK with that. It is all about people's circumstances, and everyone has different ones. So I was happy that the surgeon took the time to explore all options with us.
I keep thinking about something the surgeon said. Billy told him that he thinks Lil Bill hears more than we give him credit for. The surgeon said, that he certainly does hear. But due to his auditory neuropathy, he hears static and it is all mushed together. He does not hear what we hear when we talk to each other. He currently does not process language in such a way that he can understand it. He said that if he hears mush, he will speak mush. That actually made me feel better and hopeful. Lil Bill really does try to talk but does not have much of a vocabulary. He has said mom, and actually said dad today for the first time! :) But he does not say either regularly. When he stops hearing mush, he will probably stop speaking it.
Now before saying what I am about to, keep in mind we still need to have an MRI, a cat scan, and genetic tests throughout the next month to officially qualify Lil Bill to be an official candidate for the implants, but the team agreed today that Lil Bill seems like a great candidate. With all the medical information they presently have and from watching him, they think he would do really well with the implants. They kept saying today that he tries to communicate, he is very vocal and has such a strong desire to interact. He really does, he is truly a people person, he must get that from his dad! ha! It was also relieving to here that they do not believe some of Lil Bill's other issues will hold him back from talking verbally (such as his left vocal cord paralysis). While he does have other limitations, they are remaining positive so I am as well!
I was also very surprised that they said the cochlear implant surgery will only take about 2 1/2 hours. Then they said if all goes as planned, Lil Bill will only be in the hospital over night. I imagined him being in the hospital recovering much longer, that is what I read on the internet (SO HEY IT MUST BE TRUE
RIGHT? (; ) After the surgery, they will turn the implants on 3 weeks later. They wait so long because the area around the implant in tender and if they turn them on right away the sound waves could cause pain. They do not want him to associate sound with pain. Our last tests are done April 15th and if everything comes back ok, they said Lil Bill will be getting the implants in May. That seems so far away and so close all at the same time.
I have never been so scared about something. I mean after today I feel like the chances of the implants working are really really high. But the anticipation is always the worst. Billy and I were talking today about Lil Bill's first surgery. It was the PDA ligation (heart surgery to close a valve in his heart) when he was only 2 weeks old, he was not even a pound and a half. Well we had not time to go through the anticipation. We went into the NICU on a Friday morning to visit him and they told us the surgery was going to be done later that afternoon. That was also the first day I ever kissed him. The surgeon was telling us about the risks of the surgery (including death) and right after that they asked if we wanted to kiss him. It was the most terrifying and beautiful experience. Never how I imagined giving my son his first kiss, but it is our story. It is amazing that there is a surgeon willing to operate on such a tiny baby's tiny heart. We saw the scar afterwards and we couldn't believe how little it was, and that they performed heart surgery through an incision so small. Technology is truly amazing.
Before deciding we were going to get the implants, a reason I did not want to get them was that it seemed unnatural. But then it hit me, what about Lil Bill's story is natural? Even going back to my pregnancy with him. Having to get a cerclage, a pessary, and weekly progesterone shots. Then after he was born, being put on a ventilator immediately, and staying that way for 12 weeks. Several surgeries, and machines were keeping him alive for months. He was on the jet ventilator for a long time. The jet ventilator pumps 420 breaths into the person on it per a MINUTE. What the hell is natural about that? So if we wanted to stick to things that were only natural, honestly Lil Bill probably would not have survived long enough to have the option to be saved. My weak ass cervix would have done it what was naturally trying to do weeks prior. Just like what it did with our first pregnancy with Aiden. We have always used the technology and resources available to give Lil Bill the best shot. So why stop now if we believe this is the best shot for him? Unnatural is natural to us.
So our plan is to stay in the day, not worry about May and the surgery until May and the surgery gets here. I am just going to enjoy my baby boy, and his happiness.
Every single one of Lil Bill's issues can be traced back to him being born premature, at only 23 weeks and 1 day. All of the 'unnatural' things that kept Lil Bill alive were initially determined a success through research. The March of Dimes funds research to help maintain a full term pregnancy and helps babies get healthy. We started participating in the March for Babies walk after we lost Aiden. We walked in it the first year with Aiden in our hearts. We walked in it the second year with Aiden still in our hearts and Lil Bill in our arms. This year we plan to do the same. Please help us and join us on our team to walk. You can also donate to our team and all the money raised will go directly to the March of Dimes.
CLICK HERE TO CHECK OUT OUR TEAM PAGE TO SIGN UP TO WALK WITH US OR DONATE TO OUR TEAM!
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