So many changes, so much to do.

We are healing slowly, bit by bit every day. I no longer cry everyday. I am going to a support group for those who have lost babies. I am back at work. And I miss Izabelle terribly.
How is it possible to miss someone you have not even met?

And still, life goes on. Miles is the light in all the darkness. He is my cheerful little boo, a total charmer. He came with Jeff and me to my school winter party and flirted with all the teachers. He played and laughed and had a great time, even though he was up way past his bedtime.

Last Thursday he had tubes put in his ears. He has had fluid for awhile now and I think this is really going to help him. At his yearly IFSP, Nikki noted that he is at age benchmarks or beyond in everything except expressive language. And yet he babbles up a storm. It will be amazing when all that talk is actual language.
The tubes went smoothly. Jeff and I were both overanxious after having lost Izabelle. I was very much on edge when he had to have general anesthesia for his ABR at six months but I was almost as anxious this time around. Jeff asked me to call him as soon as the surgery was done and didn't even make it that long before calling.
Miles was like Curious George when the monkey goes to the hospital. All the other kids were nervous and sad. He was clowning around, flirting with a little girl in the waiting room and making everyone smile. It took a long time for them to finally come get him for the procedure but the actual operation took about 30 minutes from when they took him from me until the time I could go be with him. He was kind of cranky until he was awake enough to take a bottle. Then he came to and we made it home in time for another bottle and a three hour nap.
I think the worst part (for him, at least) was the drops we had to put in his ears afterwards. It took the full three days for him to learn that they didn't hurt. Now that we don't have to use them anymore he wants them in his ears. Silly boy...

We're buying a house. A townhouse, actually. It's got 4 bedrooms and 2.5 bathrooms and closets! The closing date is this Thursday and moving day is the following Tuesday. It's very exciting but stressful as well. One thing we'll have to do is transfer Miles' services for Early Start as we'll be moving to a new county. I'm not looking forward to it. And then there is the actual moving. We're trying to pack when Miles naps. We obviously haven't gotten much done. My mother is coming soon to watch him while we work. Hopefully we'll be ready!

Tragedy

I went in for an ultrasound scan on Friday to find that Izabelle's heart had stopped beating. I had suspected as much. I had a minor complication with amniotic separation 4 weeks before and was very scared that this would affect the baby. I stopped rock climbing and modified my activities so I wasn't doing as much lifting and carrying. After we came back from Florida and I had started back to work, I had noticed that Izzy wasn't moving very much. I worried about it and rationalized it. So when the technician told me that they couldn't see a heartbeat, I was devastated but not very surprised.

Jeff was at the house we hope to buy, meeting with the inspectors, when I called from the doctor's office. He left immediately to meet me at home. We cried together and waited for my OB to call. Because I was so far along with the pregnancy, I had to deliver her. We checked into the hospital at about noon and, after taking some blood and starting an IV, they gave me some cytotec to start ripening my cervix for labor. If the contractions didn't start on their own, they would have broken the amniotic sac and given me some pitocin.

When these terrible things happen, there are always the bright spots that allow you to see all that is good and joyful in life. I had e-mailed my playgroup moms and told them what was happening. I asked that if they were available that they come to the hospital and hold my hand. I also called Leeann, my college roommate and dear friend. They all came to help. And they gave me exactly what I needed; people to cry with and people to laugh with and most of all, some distraction. They brought flowers and chocolate and magazines and movies. They arranged a schedule to take care of Miles while Jeff and I were in the hospital and a schedule of people to bring food so we wouldn't have to plan dinners. I am so grateful for these wonderful women who came to my aid and helped us through.

It took well into the evening before I was getting any significant contractions. I was exhausted and knew that I was not going to be able to sleep so they gave me a shot of morphine and some other drug and this helped stave off the pain and let me sleep for a few hours. Somewhere around 2 am, the contractions started for real. The night nurse gave me another kind of drug through my IV and, while that made me loopy, it didn't dull the pain. I asked for the epidural but by the time the anesthesiologist got there, I was ready to birth her. Izabelle Rhea Blanco was born at 2:37 am on Jan. 10, 2009.

We held her and cried and talked to her and cried. The hospital encouraged us to take photos to put in a memory box that they provide under such circumstances. They also put in a hat and blanket they photographed her in and a little stuffed heart along with a journal for us to put down thoughts and feelings. We put in the only outfit that I bought for her and will put in some of her ashes when we get them.

We have scheduled a ceremony for her on Jan. 18. We will scatter her ashes at Fort Funston into the ocean.

Fun in Florida

To keep himself entertained, Miles discovered two unique things in his grandmother's kitchen. The first was a set of drawers that contained pots in one drawer, lids in another and hot pads in a third. He began to use the hot pads to pick the lids up from the pots like mom and dad do when they are cooking. Smart boy!
The second thing he discovered was the cereal closet. He began by removing all the boxes of cereal and standing on them like he does with his books at home. Then, when he discovered the adults weren't too keen on him standing on the boxes, he would clear the top shelf and climb into it. Then he discovered that he could close the cabinet doors and play peek-a-boo with whomever was on the other side.
Another cute thing: We were driving in the car to see Harry and Kristen and Clovis. Miles was in the back in his car seat, babbling away to himself as he often does. Suddenly, he lets out a peal of laughter and Jeff said, "I love it when he tells himself a funny joke." Later, as the adults were sitting around and I recalled this event, Jeff pointed out Miles' model- we talk and then we laugh, we talk and then we laugh. He gets it!
I have a 2 1/2 min. video of him playing with the pots but it is taking forever to get up here. If I can post it, I will.

Christmas in Florida

We spent our holiday in Florida visiting with Jeff's friends and family. My mom flew down from New York for a few days which was really nice. Miles dealt very well with the plane ride out and flirted with anyone available. He also did quite well with the huge hordes of people who descended upon Lorraine's house to meet him. We got to see Harry, Kristen and Clovis for awhile. Miles decided that he didn't really want a big sister who was going to tell him what to do but he doesn't think he'll mind a little sister who he can push around.
My mom came on Friday afternoon and Saturday we had a huge gathering with Steve Miles, one of Miles' namesakes, Libby and Eric and their two daughters, Zoe and Quinn, my mom and Jeff's parents. Later Uncle Ted and Aunt Cathy showed up to coo over Miles. Cathy and Miles created a lovely bond.
On Tuesday we had more visitors as Jeff's aunt, uncle and cousin came to visit and then we were joined by more friends, Bob and Kathy. Through the week, Miles met various people around the neighborhood, one who gave Miles a wonderful little bear who he fell instantly in love with.
The trip back was a little more difficult as we left in the afternoon Florida time and didn't get back until quite late even by West Coast standards. He fell asleep for small naps on the plane but wasn't really rested. He fell asleep on the shuttle home and was not happy when I woke him to change his diaper and get him into his PJ's.
The major news from this trip is that Miles finally started walking. We knew he was getting close and he would walk everywhere as long as he had some support. But gradually over the week he gained more and more confidence and began taking longer and longer forays on his own power. We were all very impressed! He's kept it up now that we are home. I'm in for it now!
All the relatives commented on how well he is babbling and signing. He's really thriving.

Welcome to Holland

I found this essay on a blog at Deaf Village and thought I would post it here to get more exposure. I thought it summed things up beautifully. We are often asked about Miles' hearing aids on the playground and when we inform people of Miles' permanent hearing impairment, there are often comments like, "Wow, that must be hard." Well, yes, and no. It's like- going to Holland. Enjoy.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this...
When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
”Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
Its just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away ... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

©1987 by Emily Perl Kingsley. All rights reserved.

Deaf Village

We are now listed as contributors to Deaf Village (www.deafvillage.com) which also has many other blogs from individuals and parents of individuals who are deaf, with cochlear implants and hard of hearing like Miles. It's an interesting survey of the deaf and hard of hearing community. Check it out!

Miles' 15 month check up

Well, there have been a few interesting developments since Miles' last check up. He is now 32.75 inches tall, and 23.5 lbs. That puts him in the 90th percentile for height (pretty steady) but he's dropped to the 36th percentile in weight. He's been a little sick as of late so that may account for it. Also, we're thinking he's allergic to peanuts. Right before Thanksgiving, I gave him just the slightest bit of my toast that had some peanut butter on it. First he got all snotty and then started getting blotchy all over his body. About 15 minutes later he threw up. The doc said to just keep him away from it, maybe go see the allergist to do a whole panel. Everyone agrees that he's doing very well even though he's not walking yet. It's just a matter of time. Give him a push toy and he'll walk for miles but he still needs the assurance of something to hold on to.

The nurse who gave him his shots said the doctor came out of the examining room and told her, "You're going to have a hard time with this one."

"Why?" she asked. "Is he a real handful?"

"No," he replied, "but he's so cute you're not going to be able to bring yourself to give him the shots."

Miles is starting to say many approximations of words and do many different signs.

He uses "da-da" consistently to mean Daddy, teddy bear and ball, though he'll say da-da for lots of things.

He now calls me "ma-ma."

He says "baba" for bottle and signs for milk.

He says "ca" for car and "sheeze" for cheese. He can also approximate saying cracker.

I'm pretty impressed with his receptive language. I feel like the signing and the verbal words are coming super quick now, like he finally understands that all these objects have names and he's determined to learn them all.

Right after Miles had his vomit session from the peanut butter, I took him to Early Start for the first time in many months. He was unsure about where we were until we went to sit in circle time. Then his face lit up and he was so excited he could barely contain himself. He was so into being with all of his friends, singing songs, and playing with the parachute. When I came back after the parent rap session, he looked at me, waved and went right back to playing. He was not ready to go- the first time that every happened. If he keeps this up, he's going to be an uber-kindergartener. :)