Happy Birthday Big Brother!!!

Happy 3rd Birthday Jimmy!!!

Yum...Cake!!!

Did someone say cake???

Happy 3rd birthday to Jimmy! This big brother has been through many adjustments this year and has passed with flying colors. He's going to be a great big brother through the years and we are so blessed to have two beautiful children to share our lives with. Just had a cupcake he picked out at the store with Mommy today and the family party will come shortly. Grandma and Grandpa stopped by as well to wish the big guy a happy birthday along with his cousin Raymond.

Jenna continues to do well, she is over 8lbs now and it seems she is getting bigger each day. Thank all of you for your thoughts and prayers. Since the article about Jenna was in the paper, we have received so many letters of support, cards and e-mails with wonderful thoughts. Don McCormack did an outstanding job on the article. If you didn't see it, here is the LINK to the article in the Star Beacon.

Above is a recent picture of Jenna, with Grandpa (can't see much of Grandpa, but it's him!)

Thanks for checking in and we'll see you all soon!

Genetics Visit...

Daddy's Little Heralds...

Daddy's Littlest Herald...

Hello again everyone! Janice and I are truly amazed every time we visit Jenna's site to see how many people have visited. To know you are still thinking about us and getting angry with me for not posting as soon as we got back from our Genetics appointment Monday is a wonderful feeling. Thank you all again for all your thoughts, prayers and support.

Janice, Jenna and I ventured back to Cleveland to meet with her Genetics doctors and to begin to get an understanding of what is ahead. Jenna, as you know, has Turners Syndrome, a 45, X karyotype. Basically, this means Jenna has 22 complete pairs of chromosomes, and the last contains only an X chromosome. Here is a good picture of what the chromosomes look like in her. Notice the single X in the lower right hand corner of the diagram. Jenna should have received 23 chromosomes from Mom, and 23 from Dad. In one of us, one X was not there. The level of deletion of this X in her DNA is what causes the abnormalities such as the coarctation of the aorta and her horseshoe kidneys. (We did find out her kidneys are connected only by a fibrous bridge and not kidney tissue.)

We know that there are cells in her that contain both X's, but unless we took biopsies all over her body, we will not know what contains both. There is really no reason to do this either. Jenna is presenting with all of the symptoms of Turners Syndrome, she has been treated for the heart defect, we have been educated about her bicuspid aortic valve and issues we will have to face with this and her horseshoe kidney...In our opinion, it is time to settle down and enjoy our gift.

We have been told to take the next 6 months to a year and just enjoy our new life with our two children. There are things we need to be more aware of, but it looks like we get a break for a little while...

Our next step is to meet with an Endocrinologist to begin to discuss growth hormone therapy and estrogen therapy for her. From what we have learned we could start hormone therapy as early as 9 months and estrogen therapy when she is 12. There is so many things that can happen from now until then, and we will continue to be educated on her condition and can now truly dive into what is reality for her.

There will be many decisions to make in the upcoming year for her. At this point, we just do not have enough information to start Jenna on anything. Not to mention, we need this break. Football season is in its last two weeks, and although the Holiday are hectic, it is actually the slower part of the year for us. Janice will go back to work after Thanksgiving and Jenna will continue to get stronger and healthier.

This will probably be the last post for a while since we really will not have much to report. There are no doctors appointments in the near future besides the normal pediatrician visits each month. I will try and post new pictures of Jenna periodically. Again, we cannot thank all of you enough for all your prayers, gifts and support. We are so thankful for the friends and family we have. This has been quite an experience for my entire family. We felt your prayers and were energized by your kind words and comments on this site. God bless you all, and here is to a happy, healthy and safe Holiday season and years to come.

Happy 3 Week Birthday...

Daddy's Little Herald...(Great Shirt!!!)

"Baby's got blue eyes..."

Big Brother Jimmy and Jenna...The First "Holding"

Mommy, Jimmy & Jenna

Hard to believe three weeks have passed. What a ride it has been and continues to be. Jenna is still doing great. We visited Dr. Edwards, her Cardiologist, Friday at the Cleveland Clinic and they did another EKG and an Echo Cardiogram during the visit. All looked great. You could actually see the stitches holding her repaired aortic arch together in the Echo...it is still amazing to me what modern medicine can do for these babies. Dr. Edwards is going to begin to see patients at ACMC, so when we visit him in a month, we will just have to drive down the road. That will be a relief!

Jenna also has a bicuspid aortic valve which will require a little more attention to colds. She will also need a round of antibiotics before any dental procedures, and taking care of her teeth will be a priority. Infection can head right to this valve, and is why we will have to monitor her closely. Needless to say, the doc's have recommended keeping her home and with few visitors until she has had her two month immunizations and her immune system gets stronger. Plenty of hand sanitizer in the house...

The next and long awaited appointment will occur on October 6th. This is the visit to the Genetics Doctors. We will hopefully have a better handle on what level of Turners Syndrome Jenna has and if there is any other areas of concern we need to address. We hope to learn more about the hormone therapies available to Turners children. We have stayed away from many internet sites and have only read what the doctors have suggested and given to us. It's hard to take the wait and see approach knowing there is a wealth of knowledge out there, but we want to be sure we are researching the right things. Again, this is the appointment we have been waiting patiently for.

Jenna continues to gain weight, is picking her head up, and her incision looks better and better each day. The areas where her IV's and other internal lines were are healed and almost not noticeable unless you are looking for them. When she is awake, she is content. When she is sleepy or a little hungry, she lets you know right away! She has good periods (3-4 hrs) of sleeping at night. She also has her "I want to be up and fed every 2 hours!" moments as well.

Janice and I were able to get away for a few hours Saturday night to attend the Sts. John & Paul Sports Raffle. Grandma and Papa stayed with Jimmy and Jenna. All in all, things are returning to normal with the addition of Jenna. Jimmy has been great through it all.

Thank you for your continued support and prayers. I apologize for not posting in such a long time. Janice and I are so amazed by how many people are checking the blog and how many people keep dropping hints to get it updated. I will try to be a better blogger!

1 Week Anniversary...

Hard to believe it was a week ago today Jenna went into surgery to repair the narrow aortic arch. Even more amazing is that she has been home with us for three days!

Jenna continues to amaze us each day, growing stronger and stronger...eating more and more...crying louder and louder! And what a great sound it is.

Life is beginning to get back to normal. I went back to work on Tuesday after an eventful 1st day home. We took Jenna to her pediatrician on Monday for the first evaluation and weight check. As we were leaving, Janice had some unexpected bleeding that required an ambulance ride from Madison back to Lake East where it all began...so much for being home!

It turned out to be nothing serious, and probably a result of all the stress last week brought on. Janice felt fine the entire time, but it was a little scary holding Jenna, fresh off of heart surgery and seeing your wife being loaded into an ambulance. We eventually made it home to Grandma and Jenna (Grandma raced out to get Jenna and bring her home while I flew to Lake East) around 5:00 p.m.

I think we are going to stay put for a while. Friday we return to the Cleveland Clinic to meet with her Cardiac Surgeon, Dr. Mumtaz. I will eventually post names of all the docs involved once we find all the business cards we have been handed over the last week and try and put faces to names.

We will let you know what happens on Friday with the return visit. Genetics doc on Monday and kidney doc on the following Monday... We're going to be on the road for a while!!! We are hoping the visit with Genetics will give us better insight into what level of Turners Syndrome Jenna has. Her complete chromosome tests should be done by then.

Enjoy some of the pics we took today of Jenna. She is such a little peanut! I also posted a pic of big brother Jimmy when he was born... see any resemblance?

Make sure you get my good side Daddy!


How about changing this shirt???


This is a picture of big brother Jimmy before he left the hospital.
No doubt we are brother and sister!

Sweet Home Ashtabula...

Time to get this stuff off of me...

My outfit for the ride home...

Jimmy, Daddy and me, finally at home!!!

So, here we are, back in Ashtabula and with our little baby girl Jenna Ashley. We were able to leave the hospital around 4:30 p.m. and arrived home around 5:45 p.m. Jenna looks right at home in her crib, with her sheets, and just quiet around her. She has immediately taken to nursing, and has not had a bottle since we left the hospital. Janice and I finally were able to give her a much needed bath...poor thing has not really been washed since birth. Needless to say, it is going to be so nice sleeping here tonight and having her in our home. It is so hard to believe six days after birth, and four days after heart surgery, we have her home.

Jimmy was a little timid around her at the beginning, but soon warmed up to being a big brother. He held her hand and "petted" her head as he likes to say. He is already asking when he can play with her... unfortunately for him, her discharge papers state she cannot "roughhouse...or play football..." for at least four weeks.

Jimmy is going to stay one more night at Grandma & Grandpa's house so we can get used to Jenna's patterns and get her settled. Hopefully we will be back to some normalcy next week.

She will see her pediatrician either Monday or Tuesday, and back to the Clinic on Friday to visit the cardiologists. There are many other "gists" we will have to see in the upcoming weeks as more information about her chromosome tests and her level of Turners Syndrome becomes known.

We will continue to post at night as we get more information, but Janice, my family and I cannot thank you enough for all your prayers, messages and all that you have done for us and Jenna Ashley. There is no way to express how much this experience has changed us and made us realize how many great people we have in our lives.

So, from our home in Ashtabula, we finally say goodnight...and here's to another great day on Earth. God Bless all of you for all you have done.

A View From The Outside...

This weekend was time for the Cleveland Clinic to show off their new buildings, and throw a big party for the doctors, donors and the public. This place is absolutely amazing. We are so lucky to have this facility so close and to have an affiliate in ACMC in our neighborhood. There is no doubt, this facility saved my daughters life.

So why a picture of the outside??? Well, we're on our way home!!! Yes, you read that right...Jenna Ashley is heading home today. No more cords, monitors, oxygen, pokes and prods. Just a nice crib, and wonderful family and friends.

As for the pictures, the glass structure is now the entrance to the Clinic where a parking deck used to be. The fountain is in the center of it all. It is a magnificent structure with a price tag of $600 million... So Jenna probably paid for the fountain with her stay.

She'll Do It Her Way...

Another good night for Jenna in the step-down unit. This morning, they took her off oxygen and she is holding her stats well. There was some concern about low sugar levels, so she is now feeding every two hours and it has been increasing since this change. Jenna has a little jaundice, but the feedings and poops have been bringing her levels lower. She also passed her hearing test this morning after "referring" it yesterday. I think that was the nice way of saying she failed and not hurting her self-esteem...man, even in babies we are being politically correct??? She is being grounded anyways!

She will be going for an echo cardiogram and ultrasound this morning to get a better look at the repair and to see how her little heart is doing. She is much more alert and feeding from the bottle well. Janice will try to nurse her when we get home, in an environment much more comfortable for both Jenna and Mom. They want to be sure the baby is getting all the food she needs and it is much easier to monitor this with the bottle.

We are actually beginning to discuss coming home with Jenna with the doctors. Her surgeon informed us today it was his opinion she could have went home yesterday!!! Timing has been so key to her success. Her surgeon explained to us because of the quick actions taken by her doctors at Lake East so soon after birth, they were able to do the surgery quickly without starving her for days and she was not allowed to "get sick" as most babies with her condition do. She was immediately given drugs to keep the arch and its valves open within hours of birth...this was critical to her success. It is scary to think if the doctors didn't catch this, and she wasn't given the drugs needed to keep this arch open, what would have happened.

Janice and I are amazed at how many people are following her progress and cannot thank you all enough for your notes and prayers. It is very therapeutic to read your notes and keep you updated this way. It has really helped us to keep track of her progress and we have even had to check the blog to remember what has been done when!

I want to especially thank Logan and the Jets for what they did for Jenna and my family yesterday...You are an incredible young man Logan. Keep up the great work! Go Jets!

We'll check in tonight with another update...