After being home with both girls for almost a month and getting settled into a routine with them, it was time for Amelia's second surgery. When she was 5 weeks old she had surgery to place her shunt for hydrocephalus. That surgery went well and she only had to stay in the hospital one night. It was so hard for me to have to leave Hannah for the night, but it was something we knew that we would face over and over again. We also now knew that we would be facing a lifetime of "shunt issues". While shunts are life saving and a blessing, they can also be very tricky. Some people have the same shunt their entire life, others have multiple failures and infections. Amelia has had 7 shunt surgeries plus one failure without surgery, some due to failure and some due to infection. Her last failure was in December 2007, but she did not require surgery because her current shunt drains into the large blood vessels into her heart. This failure was resolved with some "clot busting" drugs. So needless to say, whenever Amelia is not acting quite like herself I usually worry and start thinking that her shunt is failing.
After Amelia's first shunt surgery we went ahead and scheduled to have her hearing retested. She was 8 weeks old when I took her in. The night before her hearing test I remember sitting with her in my lap at the kitchen table. I would talk to her and she would "talk" back. She and Hannah both made the same type of baby sounds, so why should I worry. I was so convinced that everything was fine, that I took her to be tested by myself. Steven went to work that day and his mom came over to stay with Hannah.
Amelia slept in my arms through most of her hearing test, which made it a little easier to get through. Finally, the first test was finished. I was completely shocked when the audiologist told me that Amelia had a profound hearing loss. I remember saying "but when I talk to her she talks back". What did a profound loss mean? Well, it meant that she might be able to hear a chainsaw or jet plane at close range. It meant that she was deaf. I remember crying in that dark, little room and feeling guilty for being sad that she could not hear. I told myself that I should just suck it up and be grateful that she was alive. I now wish that I would have given myself permission to fully grieve about her hearing loss at that time. The audiologist did a second test to find out what type of hearing loss she had, and we found out it was a sensorineural hearing loss.
Within a month of the hearing loss diagnosis Amelia had a CT scan to look at her inner ear anatomy. We found out that her hearing loss was caused from an inner ear deformity called common cavity. Common cavity is pretty rare and amplification can be tricky. Amelia started wearing a hearing aid when she was 3 months old, but we were told that her best chance to hear sound would be with a cochlear implant. We quickly became overwhelmed with all of the information and choices for families with deaf children. Hearing aids and cochlear implants, to sign or not to sign (and if you do sign what type of sign), involvement in the deaf community/culture. With Amelia's hearing loss diagnosis, I knew that I would not be able to return to work full time. Her needs were going to be too great, but I knew that for my sanity that I would need to work some. I needed to keep something that resembled my "old" life. So, I work 1-2 days each week and it seems to be a nice balance for me.
When Amelia was 21 months old, she had surgery to place a cochlear implant. We did not know what type of benefit she would receive from it because of her inner ear deformity. The doctor told us that realistically she would probably only hear environmental sounds. We feel very fortunate that Amelia is able to detect speech with her implant at almost normal hearing levels. We attempted to use an oral approach with her after she was implanted, in hopes that she would develop speech. While she did develop some speech, it was at an incredibly slow pace and as she got older she was becoming more frustrated. So, in February of this year we made the decision to start signing with Amelia. It was very hard at first to make the decision. We had worked so hard for 3 years at trying the oral approach. But, seeing how well she is doing now is making it much easier. We are all learning sign, but she is learning faster than we are. She is so smart and funny, and now that she can communicate better she can really show it.
So, during all of this you might be wondering about what was going on with Hannah. She is completely typical and healthy. Before the girls were born I worried that she might not get enough attention, because of all of Amelia's needs. A few weeks after they were born, that worry was gone. Hannah was and still is "spirited". She always demanded her attention as a baby and makes sure that she gets enough even now. We love her for it and know that her "strong will" will be be a quality that will benefit her throughout her life.
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