More Shocking News!!!

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.

May 13, 2003

I was 34 4/7 weeks pregnant with the girls. I was tired and huge (my waist was 44 inches around) and wondering how I was going to make it another week. My C-section was scheduled for May 20. The doctors wanted to deliver me by 36 weeks because of Amelia's spina bifida. My pregnancy went very smoothly- I was able to work until 33 weeks and never went on bed rest.

On the morning of May 13 I had been treated to a pedicure and then had a doctors appointment and ultrasound scheduled. At this point in my pregnancy I was seeing my doctor twice a week. The babies growth looked really good and Hannah was very active and doing everything that she was supposed to do. Amelia was just being a little less active that morning. So, the doctor wanted me to go get some lunch and come back for another ultrasound after to see if we could get her more active. I went to Wendy's for lunch and even drank my first real Coke in months. After that, Amelia was still not very actice. So, they put me on a monitor in the office and watched us for a little while. Around 4pm my doctor came back in and said that after consulting with the high risk OBs, they felt like it would be safest to go ahead and deliver the girls today- at 8pm. I managed to not completely freak out, but I was pretty scared. I wasn't even sure that I was completely ready yet, but the girls were going to come regardless of if I was ready or not.

After a very quick trip home to get our bags, Steven and I arrived at Vanderbilt at 6pm. After getting settled in and ready, I was taken back to the OR at about 8pm. I know that it was kind of busy in the OR before the girls came, but I don't remember all that much. But, I do remember the girls being born. Hannah came first at 8:21pm, and immediately started screaming and I knew that she was ok. It seemed like an eternity, but it was only 2 minutes later that Amelia was born. She did not cry immediately like Hannah did, but she did start up with a little cough and then she started to cry. We were so relieved that both girls were doing so well, they were not struggling with their breathing at all. Hannah was able to stay with Steven and I in the OR and then go to the well baby nursery, but Amelia had to go to the NICU. I only saw her for a few moments before she was taken to the NICU. 8 hours after she was born, I was able to get up and go see her in the NICU, but we were not able to hold her yet.

One of the biggest risks for Amelia for the first 18 hours (until her surgery) would be infection due to her open spine. They kept a sterile bandage over her back until surgery, and she had to stay on her tummy. So, when she was 18 hours old she had her first surgery. Steven and I were able to be with her before they took her in and then afterwards when they brought her into the recovery room. When we saw her in the recovery room, she was lying on her back and it was the first time I had gotten a really good look at her face- she was beautiful.

It is so hard to even put into words the range of emotions and thoughts that went through our minds. The reality of spina bifida was staring us in the face. We have this amazingly beautiful and perfect baby, but her legs did not move. Her knees would not completely straighten out. Her toes did not wiggle when I tickled her feet. She had a large spinal deformity on her back, that is essentially a bump. She had hydrocephalus and we did not know how long it would be before she had her second surgery to place her shunt. Not to mention keeping an eye on bladder and bowel function. All of this was stuff that is always in the back of your mind, but I could look in her eyes and see that sweet face and the stuff didn't matter. Of course I wanted her to be healthy, but that was not the case. We made the decision to try our best to give her every opportunity to be all that she can be regardless of how much work it takes from us.

Hannah and I spent 4 days in the hospital. Hannah did really well, other than having a little trouble eating. She was so sweet and cute, and we couldn't get enough of her. Amelia spent a total of 17 days in the NICU. Those were some of the hardest days. I was so torn between my two babies- Hannah was at home with us, while Amelia was at the hospital by herself. We visited her everyday, but couldn't wait to get her home. Also, the hospital would not allow us to bring Hannah into the NICU, so the girls were seperated for their first 17 days.

When Amelia was discharged from the hospital, we were given a list of referrals and follow-up appointments. We would need have her hydrocephalus monitored very closely, keep a close eye on her bladder and kidneys, make sure that she was eating enough to gain weight, make appointments with early intervention, and then follow up on her newborn hearing screen. Amelia failed her newborn hearing screen in the hospital, but I had decided to completely blow it off. A lot of babies failed, but in actuality they could hear. Plus, when I talked to her she would look at me. I do remember looking at her ears while she was still in NICU and noticing that she had a skin tag in front of her right ear and I even made a comment to Steven about it. An ear tag could indicate either hearing problems or kidney problems, but usually they meant nothing. I TOTALLY blew all of this off. We decided that we would wait until after she had her shunt surgery before we would take her to have her hearing tested again.