Wednesday, August 29, 2007

Surgery Update

It's done, and like always, there's good and bad news. The good news is that Rachel is recovering well--much better than last time. Already today she is up and walking around, communicating, and acting much more like herself. The bad news is that the doctors were unable to reinsert the implant and plan to do so two months from now.
So here's how the day went: We left home at 8:00 without giving Rachel anything to eat and only 8 oz of apple juice to drink. The drive took about 3 and a half hours, and while the other kids were quite fussy, Rachel was fairly calm. Christian dropped me off at the hospital with Rachel while he took the kids to lunch, then the hotel. I really wanted to be with Rachel. We were admitted quickly and met with the doctors. I was relieved that our doctor had enlisted the help of a senior partner for the surgery and that the senior partner had contacted Rachel's previous surgeon at Johns Hopkins, whom he knew personally, and discussed her situation. The doctors said that there was a good chance they would not reinsert the implant at this time, depending on how her inner ear looked. Rachel was given "happy juice" to keep her calm before the general anesthesia, and was in the operating room less than two hours after we arrived. She was in surgery for just over 4 hours, and during that time Christian joined me in the waiting room. He stayed with Rachel during post-recovery while I took the kids to dinner. The hospital had not reserved a bed for Rachel as planned (another minor bump in our road) so we took her back to our hotel with us. Thankfully, she was very sleepy, and not at all sick and delirious like last time. I was so relieved, especially when morning came, to see how well she was doing. She slept through most of the night, waking only occasionally to try to remove her bandage. In the morning she began to drink and ate everything we offered her. We took her back to the hospital for a checkup, when the doctor removed the bandage (a huge relief). We went back to the hotel, where she continued to improve, walking around and communicating and asking for more food. We left at 11:00 and drove home. She is still on pain medication and antibiotics, and we'll probably keep her out of public for a while, but it is a huge relief to see her feeling so well. We are very disappointed that we have another surgery to look forward to, and we have some big choices to make about it. Please keep her in your prayers. We'll probably just focus on learning to use ASL as best we can over the next few months and pray that she will be able to make up for lost time once she has the implant again. She will probably be at least four months without hearing by the time this is all over. We appreciate everyone's concern and prayers-- they worked-- and now are just waiting to schedule everything, and to have this baby come.

Monday, August 27, 2007

Tomorrow's the big day

Rachel goes to surgery tomorrow (Aug 28th). I've been so nervous about it, but the closer it gets, the more confident I feel that we are doing the right thing. We'll head up to Chapel Hill as a family so Christian and I can take turns staying with Rachel while she recovers. We'll post an update when we know how it goes.
Hannah started Kindergarten today. She insisted on riding the bus this morning, and looked really confident and happy. She said she had a "perfect day." I'm so glad she's happy with school. Rachel went to a pre-K orientation today, as well, but we won't send her for at least two weeks, if we don't decide to wait until her implant is turned back on. Nathan will miss the girls when they are off at school...
And I'm still pregnant, and this is the first time I feel like I'd rather not have this baby come very early. He needs to wait until next week, so we can give Rachel the attention she needs this week. We also are concerned that Hannah and Nathan have their needs met. Hannah has a tendency to get emotional and make up illnesses when she's under stress.
Nathan and Rachel have begun to say their own prayers, and its really fun to hear (or see) what they have to say. On Sunday, when Rachel really wanted to go to church but we kept her home to keep her healthy, she prayed that she was thankful for church, food, and butterflies. Nathan said in his bedtime prayers that he is thankful for cars. Sometimes they fight over whose turn it is, but its nice because Rachel didn't like saying prayers until Nathan started.
That's it for us. We'll update when we have news.

Sunday, August 12, 2007

Another busy week! Congratulations to DeAnn and Jonathan on their new baby (finally a boy!) and yes, I am very jealous. The last month of pregnancy is so uncomfortable, but for once, I don't want this baby to come too early. Our biggest news is that Rachel needs to have her entire implant replaced, and her surgery is scheduled for August 28 (two weeks before my due date). About a week and a half ago, we started having trouble with Rachel's implant, and she told me that it was hurting her. When I checked it, I felt a hard lump over the implant site. We called the doctor, had some trouble finding someone who would see her quickly, and ended up driving her 3 and a half hours to UNC-Chapel Hill to get her checked out. We learned that the magnet, an important part of her implant that activates the device, had fallen out of place and was moving around under her skin. It would have been a quick fix, but when we took her back for a CT scan, we learned that there were other problems with the implant that make it necessary to replace the whole thing. Part of the implant is an electrode string that goes in the cochlea, a shell-shaped piece of the inner ear. Rachel's electrodes punctured the skin in her ear canal. This is a huge infection risk and makes the faulty electrodes useless to her. They need to be replaced and the punctured skin needs to be sewn up to prevent further problems. While they are doing all that, the doctors feel that they should move the magnet farther up her head to where her skull is flatter, making it less likely to have the outer piece (the coil) fall off and less likely for the magnet to fall out again. Here is a link to a site that gives a good explanation of how the implant works and what it looks like: http://www.theuniversityhospital.com/cochlearweb/cochlearabout/whatiscochlear.htm
We are grateful that we were able to find out about the more serious problems now while it can be fixed, but it is frustrating to have to go through all this again. The surgery is usually done as an outpatient thing, but because of all the post-surgical problems we had last time (two weeks shy of a year ago), the doctors plan on admitting her at least overnight so they can keep an eye on her. Rachel is handling it all very well, and although she says she wants to hear again, we are working on learning to sign better. It is very clear to us that no matter how much the implant can help her hear, she will always be deaf and there will always be times when she needs to use sign language. A sister in our ward used to teach ASL at the college level and she has started an 18-week ASL class for all interested ward members. I was very pleased that even in our small ward, 14 people came to class. They come for different reasons, but many of them are the Primary leaders who will work with Rachel.
Our family is busy, but happy and doing well. Its fun to hear Nathan using more words and speaking more clearly. He is very independent, but still cuddly and very happy. Hannah starts Kindergarten in two weeks and in the meantime, she tries to spend as much time as possible in the water. Christian is scheduled to retake the GMAT on Saturday in a week and a half, and during Rachel's surgery and having our fourth kid, we hope to make progress on researching and applying to grad school for next year. We are praying that everything in the next few weeks goes as planned, especially the surgery and birth, and that I stay sane. Thankfully, nothing seems to get Christian too upset and that helps me from going nuts. Its hot and humid, but the summer is coming to an end and we are happy and busy. Please--keep us in your prayers!

Sunday, August 5, 2007

Grandpa's Visit

Christian's father and sister, Bethany, came to visit with their friend, Jared. We love having company! The kids really enjoy getting to know their extended family. They came the weekend that Harry Potter came out, so we spent a lot of time reading side by side, then trying to talk about the book without spoiling it for those who hadn't read it yet. Daddy helped Christian fix some cracks in our ceiling and walls, prepping for painting later. We spent an afternoon at the Biltmore Estate, which is the largest privately owned home in the U.S. It was built in the 1890's by a member of the Vanderbilt family, and I've wanted to see it since I found out about it in high school. The home is amazing-- I could have spent much more time there, but it isn't exactly a kid-friendly place, and it started raining before we could see the gardens. I kept telling Hannah to pretend she was a princess in a castle, but she wasn't interested. Actually, Rachel and Nathan enjoyed themselves, as long as they could set the pace. They following day we had a nice kabob-BBQ with several types of meat (Christian and Daddy share a hobby for cooking and eating), and Bethany went to see Hannah in swim class. That evening we went to the city park, where there is a restored carousel and tiny train, and then the kids and Bethany played on the park. Hannah loved having Bethany to play with, and I really enjoyed seeing Rachel and Nathan warm up to Daddy.

Hannah finished up her swim class this week and is much more comfortable and independent in the water. Christian and I stay busy with our church callings and Nathan is learning to talk much more clearly. Rachel is happy and active, but her implant is giving us some troubles. It looks like the magnet in her implant has popped out of place, meaning another surgery as soon as possible. We are taking her to a hospital nearly 4 hours away, where the doctors are more experienced and we think she will get better care. This means that she will be without her implant for almost a month or so, depending on how the surgery goes. We'll keep you updated. For now, she is happy but she does want to listen again and while she is patient with the doctors, it is clear that she doesn't enjoy her visits with them. Fortunately this time, as opposed to last September, Rachel can communicate better and uses her words to narrate her experience and we can explain better what is happening and why. Please keep her in your prayers.
Hard to believe that summer is almost over!
Christian is preparing to take the GMAT again. He scored well on the language and quantitative portions, but didn't do as well with the analytical writing. We're pretty sure he needs a strong score to overcome his dubious academic record (Christian's words). We'll be applying to MBA programs this fall. Christian wants to attend Dartmouth, MIT or Harvard. Dartmouth is appealing because it offers a joint MBA/MA in International Studies from Johns Hopkins School for Advanced International Studies; MIT has a joint MBA/MS in Engineering, and Harvard is the premier program. If we don't get into any of those, we'll likely attend a part-time program and have work pay for it.