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April 30, 2006

Slow Weekend

The point of this weekend was to do as little as possible. We all needed it.

We got back from Iowa on Friday night. Isabella got a new conformer while we were there. It was about three sizes larger than the one that she had originally had in there and it looks a lot more natural than the other one did. Since she went up so many sizes, we don't have to go back until we go back for her corneal transplant. I'm really happy about that... It is going to allow us to try to get back into some sort of a routine.

One exciting thing about our trip out was our stay at the Ronald McDonald House. The Ronald McDonald House is a non-profit organization that is designed to help families with a place to stay while their children are in treatment. This was our first time staying and I have to say that it exceeded expectations. The room itself was nicer that most hotels. There was also a well stocked pantry and a kitchen area. The excitement came when I mentioned to the night manager, Kira, that there was a small issue with the sink in our room. It wasn't draining properly. Kira first offered to put some Drano down the sink, but they had run out, so I offered to clean it out. She brought in a bucket and some gloves and I pulled off the trap and out came a big nasty hair ball. Unfortunately, that wasn't the end of the clog. The drain still wasn't working right, so I asked Kira for a hanger and I bent it up and pulled out the rest of the clog. Kira was mortified, but I really didn't mind... The fact that we were able to stay at the house was more than a trade for a little plumbing work.

Aside from that, it was a pretty uneventful trip and uneventful weekend.

More to come soon... Pictures, too.

April 26, 2006

The Story

I can't even guess how many times I have told the story of Isabella's eyes over the past few days. Understandably, people are curious about what is going on and I respect that.

The reactions I have gotten can be broken down into three groups.

The first group are people that are honestly curious about what is going on and have questions about it. They typically ask really good questions and listen to the answers. This group is very good to talk to because some of the questions they ask lead you down paths that you hadn't previously considered. This can be very useful.

The second group of people are the ones that are afraid. They are afraid of asking questions and of they do, they are afraid of your reaction. They ask how things are going and then sit back and look somewhat appalled when you answer with candor. I don't unload on people, but I don't sugar coat the situation as well. I'm not going to break down if you ask and I will answer any question that I can.

The third group of people are the ones that really bother me. This group doesn't say anything and appear to show pity in their eyes. This has not been easy on us, but we do not want or need pity. We have experienced hundreds of emotions in the past few weeks. Anger at the situation in general. Sadness over the loss of the feeling of normalcy. Fear of the unknown. Stress about making sure she gets everything she needs when she needs it. Jealousy at pictures in catalogs and magazines that show children with beautiful eyes staring back at you.

But in that same time, I have never felt, for a single moment, sorry for myself or for Isabella. I wish that things had worked out differently, but they didn't and we are moving forward. Don't pity us... We have a beautiful baby girl that is very healthy. She is a happy baby. She eats well. She sleeps well. She rides in the car well. She has only spit up three times since her birth. Not too many people can say that... With hard work, Isabella's issues can be overcome and she will lead a normal life.

There is no need, or time, for pity.

April 24, 2006

Show and Tell

Noah has been asking if Misty could bring Isabella to school so he could show her off to all his friends and teachers. Today was the day.

Kids being what kids are, it led to a lot of questions about her eye.

Misty told me that when they asked, his teacher kept telling the kids that there was nothing wrong with her eye.

At that point, Noah pushed everyone back and told them that she had a special thing in her eye that was going to help her face grow. He told everyone that she had been seeing lots of doctors and that they are very smart and that they were going to help her.

He also told everyone that he was the only one that could touch her because he was the big brother... No one else had better get close.

Time for a little more show and tell...

Isabella's and her conformer
Isabella with her left eye open
Isabella and her furry protector

More soon...

April 22, 2006

Numb

We are now eight days in and I can't even begin to describe the emotional ups and downs that we have been through.

Two Fridays ago, Misty started having contractions at about 6:00am. We called the doctor and she said that we should head to the hospital. We got to the hospital at 8:00am and Misty got hooked up to all the monitors and the nurse said it wasn't going to be too much longer. Misty was in labor for about three more hours before she started pushing. She pushed for about 45 minutes before the doctor came in. One push later, Isabella was here and laying on Misty's tummy. We were both amazed at how quickly the process took. When the nurse took Isabella away to start the process of weighing and measuring, I can still remember her making a comment about how her right eye looked swollen shut. At that point, they handed her to me and I started my mental checklist...

Ten fingers. Check.
Ten toes. Check.
So far, so good.

It wasn't too much later that Isabella opened her left eye and I remember looking it and thinking that it looked a little strange, but I also knew that she had just had one of the most difficult journeys that she was ever going to make. A little bit later, the nurse came in and said it was time for her first bath. I went in with her and I mentioned something to the nurse and she looked and said that she had seen strange things with newborn eyes in the past and that we shouldn't worry about it. For some reason, though, it just didn't set right with me. When we made it back into the room, I continued my mental checklist...

Two ears. Check.
Two eyes...

She still hadn't opened her right eye and I already had some concerns over her left eye. I tried to get her to open her right eye and I couldn't get her to do it. I felt the eye lid and didn't feel anything substantial underneath and that is when I started to get concerned. I mentioned it to the nurse again and she said she would ask one of the nursery nurses to come in and check it out. She came in and took a look and very quickly told me that we needed to talk to a specialist. They called Dr. Grin and she said that she would be there in about an hour and a half and we started the countdown. That was one of the longest 90 minutes I have ever experienced.

Dr Grin examined Isabella and came in and told us the news... Microphthalmia in her left eye and Peter's Anomaly, Coloboma and a cataract in her right. Since that time, I don't think Misty and I have rested at all. We have been running on pure adrenaline and caffeine.

Shortly thereafter, they took Isabella down for a CT scan of her brain and eyes. Other than what they had seen already, they didn't find anything out of the ordinary.

On Saturday, they took Isabella for an ultrasound of her abdomen to see if there was anything out of order. Once again, everything was good.

We got to go home on Sunday and actually had a free day on Monday.

On Tuesday, we went to Children's Mercy Hospital for an MRI. That made for a long day and we didn't get the results right away, but when we did, the news was good.

On Wednesday, we had to go back to Children's Mercy for an echocardiogram. That was rather disconcerting to me because as we sat there, it looked like the tech was going over the same areas repeatedly, but I couldn't tell at all what I was looking at. Later that afternoon, we went to the pediatricain's office and got the results of the echocardiogram. She has a small hole between two chambers of her heart, but that isn't uncommon and usually closes up on its own.

On Thursday, we met with Dr. Grin again and she examined Isabella and said that she still hadn't seen any clearing of the cornea and that she would try to pull some strings and get us seen at the University of Iowa Eye Center while we were down for her fist conformer fitting. She said that it would be an initial screening and that they would make other arrangements at that point for Isabella to be seen again. That night, we drove to Des Moines and stayed there.

On Friday, we headed in to Corallville, IA to meet with the ocularist and get her first conformer fitting. On the way there, we got a call from the university and said that they had time for us. Since I didn't know how long the appointment at the ocularist was going to take, I told them I'd call back and let them know. The conformer fitting itself was somewhat anticlimactic. It took 15 minutes and she had it in. We grabbed lunch and went over to the university.

We only expected to be there an hour or so and figured that we would be back home by 8:00 or so. We were very wrong.

One doctor called another doctor and they called even more doctors. They moved Isabella between rooms and did more tests. The next thing we knew, we were talking to a surgeon about the risks and rewards of a corneal transplant. I'm sure that the entire time, I looked like a gaping fish... I haven't been walking into these appointments without a list of questions and I wasn't ready for what he was asking. The doctor gave us all the details and then gave us a date.

On May 15, Isabella is going to have a corneal transplant.

After some paperwork, Misty and I got in the car and drove home feeling more hopeful than we had since the doctor had first mentioned that there were issues.

The numbness is slowly wearing off.

More to come...

April 19, 2006

Tests, Test & More Tests

Isabella is five days old and in that time, she has had so many tests and seen so many doctors that it makes my head spin.

So far, she has seen two pediatricians, two neonatologists and a pediatric opthamologist. She has also had a CT Scan, an MRI, an echocardiogram, a sonogram, her eye dilated and looked at and the start of some genetic testing.

All in all, it makes for a long five days.

So far, here is what we know... As I mentioned before, her left eye has a cloudy retina and a possible cataract. She also has a separation in the iris of her eye that is known as Coloboma. This is a variant of something called Peter's Syndrome. Her right eye is virtually non-existent. We have been told that it is about 3mm in diameter. This is called microphthalmia. Right now, we are not sure of the vision potential in the left eye, but we do know that she can see light out of it. As for the right eye, that is up in the air. The opthamologist has said that she has a patient that has a similar eye and he can see color and shapes out of it, so there is some hope.

The only other thing that came out of all the tests, and it sounds much scarier than it really is, was that they found a small hole in her heart. Before they are born, all babies have a hole between two chambers of their hearts that allow blood flow to bypass the lungs. This is because the blood doesn't have to make a trip to the lungs to be oxygenated. This hole can fail to close in some babies until after birth. The pediatrician told us that this is completely normal, although it does sound bad. There are no other signs of issues with this and if she hadn't had an echocardiogram, we would have never known that it was there.

Tomorrow we are heading to Iowa Eye Prosthetics to have Isabella fitted for her first conformer. We will drive down tomorrow and get her fitted on Friday and then come home after that. We have asked around and it looks like they will allow us to take pictures as they do the procedure, so I'll get them up here as soon as possible.

More to come...

April 18, 2006

Big Brother

I knew from the beginning that Noah was going to be a great big brother. Over the past few days, he has proved that beyond a doubt.

Every time Isabella cries, Noah is the first over there to see if there is anything that he can do.

When Isabella needs to be fed, Noah is the first to ask if he can do it.

If Isabella need her diaper changed, Noah is the first out the door... Hey, you can't blame him for that, can you?

Noah is so excited to be a big brother. He has been telling everyone he meets that she is his sister and what her name is. I know there is going to come a time when he decides that she is a pain, but at this point, I'll take what I can get.

Now, for some updated photos...

Noah feeding Isabella for the first time.
Isabella with a flower in her hair.
Isabella sleeping.

Stay tuned for more updates.

April 17, 2006

Difficult Words

Anomaly. Birth defect. Disability.

These words are difficult to hear at any point, but as a new parent, they are exceptionally hard to swallow.

In the past few days, Misty and I have heard those words and lots more.

Shortly after Isabella was born, we noticed that one of her eyes looked different than what we remembered when Noah was a baby. The next four hours had to have been some of the worst I have ever experienced. Doctors of all kinds converged on the hospital to look at Isabella. It was a very scary time. We had no idea what was going on and the doctors didn't want to say anything to us until they knew what was going on either. After rounds of examinations two doctors and a nurse practitioner came in to talk to us. The only thing that I could say as they walked into the room was "I'm looking for good news, doc."

The doctors sat down and began to speak and my heart fell as I heard the words. Her left eye, the eye that I had initially questioned the nurse about, is not properly formed. It is slightly smaller than it should be and the iris is cloudy. Her right eye, which she had not opened yet, is basically non-existant. The name of the condition in her right eye is Peter's Syndrome and the left eye is microphthalmia.

So what does it all mean? It means we have a beautiful baby girl with a challenge. It also means that there will be lots more doctors and tests. Beyond that, I can't tell you much more. I promise that there will be lots more updates and information up here as we know more.

April 16, 2006

First Photos

It has been a busy first day and a half. Lots of things going on and there will be lots of updates here.

To appease the unending appetite of the grandparents, aunts, uncles and cousins for photos, here are a few. Like I said, there will be some updates tomorrow as it looks like we are going to be coming home.

Isabella getting warm under the heat lamps.
Isabella with Mommy.
Isabella sleeping with Daddy.
Isabella with Noah.
Noah holding on to Isabella.
The first family picture.
Mom and the kids.
Isabella holding daddy's hand.
Isabella sleeping.
Isabella opening her eye.

More updates to come in the next couple of days.

April 15, 2006

Child 2.0™ Released

Overland Park, KS April 14, 2006 - The Shepker Family Development Center (SFDC) is proud to announce the release of the latest addition to their product suite: Child 2.0TM. Child 2.0TM, codenamed Isabella Rose, was released on April 14, 2006 at 12:20 PM

Child 2.0TM had a final shipping weight of 8lbs 1oz and was 20.5 inches long.

We are extremely excited about this release and feel that it is the last component in completing the Family UnitTM product suite, said Matthew Shepker, Vice President of Operations. Now that Child 2.0TM has shipped, we will not be adding any new products. Instead, we will concentrate on new features in our existing product lines and, of course, bug fixes.

Child 2.0TM is intended to be a complementary product to the existing features in the Family UnitTM product suite. To assist in this, Child 1.0TM has been upgraded to include the new Big Brother 1.0TM technology.

We hope that the upgrade of Child 1.0TM to include Big Brother 1.0TM will minimize any potential conflicts with Child 2.0TM, said Misty Shepker, Vice President of Product Development. We are expecting there to be some minor issues with the coexistence to these two products, but, overall, we do not foresee any major interoperability problems.

Due to the extremely aggressive development schedule, there will be several patch releases to Child 2.0TM that will include new functionality. These include Toilet Training TechnologyTM (T3) and the Sleep All NightTM(SAN) feature. Also, while there are plans to include multiple communication protocols, Child 2.0TM will only ship with two very basic methods: Coo and Cry.

SFDC was founded in 1996 and has released the Family UnitTM Suite, which has been a complete success. Today, SFDC is focused on updating and upgrading their products to ensure a lasting legacy to future generations.

April 13, 2006

Punctuality

I can see already that we are going to have an issue with the new baby, if she ever decides to make an appearance.

Misty is now 5 days past due. Our little girl has decided to be fashionably late and that is stressing me out.

I have never been one that enjoys anticipation. Small amounts are OK, but 9 months worth is too much. And 9 months + 5 days is going to kill me.

Hopefully this isn't a sign of things to come.