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...

A Step Down Is A Good Thing...

Jenna has had her chest tube, arterial line, feeding tube and almost all IV lines taken out. She is still on oxygen but is completely off of all IV fluids. We are now in the step-down unit, and one step closer to bringing her home.

Janice and I made it back from Ashtabula around 12:00 p.m. to relieve my Mom and Jenna's Auntie Jenny and Uncle Tim visited this afternoon. We both got to hold her for some time today and Janice has been trying to nurse, although Jenna is in diva mode and really does not want to be bothered. She has her nights and days confused and has been sleeping most of the time. She is starting to stir a little now, so we do expect her to be up shortly. Hopefully the 7:00 p.m. feeding will go a little better.

We are hopeful tomorrow she will be off the oxygen and able to hold this stat better. This seems to be one of the only things left before she is released. It is hard to think she had heart surgery and now, just four days later, she is steps away from coming home. What a blur this week has been.

Again, I know it was your prayers and thoughts that helped Jenna get to this point. We know there were angels above watching her from the moment she arrived.

We will check in tomorrow and keep you posted.

Post Game Report...

Jenna accomplished all but the first item on yesterday's game plan. They decided to keep the chest tube in yesterday as they increased the fluids and she began taking a bottle. In case the new pressures in her chest from finally having a full belly of milk. Easier to leave it in than have to put it back after the fact.

Janice finally got to hold Jenna yesterday and give her her first bottle. Although it took about five minutes to get her into Mom's arms because of all the monitors and IV's it was well worth the trouble. It was almost the "pinch" we needed to have so that we knew her fast recovery was reality.

Grandma, my Mom, stayed with Jenna last night and Janice and I headed to Ashtabula. We got to spend the night at home, see Jimmy and I got to be with the Heralds on homecoming night. Although we didn't get the win, my boys are improving and we are just waiting for a few breaks to go our way. This will probably be the last time we can be away from Jenna because she is alert and feeding. They are even beginning to discuss when she might be leaving for home.

We are heading back to the Clinic this morning and I will try to update later with new pictures and her status.