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.

Game Day...

And what a day it is going to be. Got here again in time for rounds and she is still cruising right along. Here is the game plan for today:

1. Chest tube will come out.
2. Fluids will be increased, and she will possibly be bottle fed today.
3. Catheter will come out.
4. Arterial pressure monitor will come out.
5. 40 yard sprints by 6:00 p.m.!!!

So...a ton of activity. The doctors and nurses are all amazed how fast she is recovering. We are being a little skeptical with how fast this is going, but they have all reassured us she is on a great path. They will not move her to the step-down unit today...which is good. Even though they are moving her progress along, they do not want her out of their sight...and neither do we!

Again, good luck to the Heralds tonight. Hopefully it will not rain on the homecoming festivities!

We will check in again later tonight...Go Heralds!

Bring On The Food...

Jenna is flying in her recovery...it is absolutely amazing. She is now getting Mom's milk at 2 cc's per hour. They will monitor her to see how her little tummy handles food. She has a tube in her nose which goes to her stomach to deliver the goods. Sometimes with the narrow aortic arch, the "gut" is without sufficient blood flow and the first introductions of food can be a little irritating. So far, so good.

Grandma, Grandpa, Auntie Jamie, Jimmy, Raymond and Raechel came to see Jenna tonight and we got to spend some much needed time with Jimmy. He was excited to see his little sister and to play with all the things up here for kids. He was especially excited to see the "Nemo" fish in the fish tanks throughout the hospital. Again, these two are going to be a real handful!

My Mom, Dad and sister have been so good to us, being here almost everyday, and taking care of Jimmy. He is going to his favorite babysitter, Terri, so he can have some normalcy while Janice and I are here.

Well, tomorrow brings another day, and Homecoming for the Heralds. Please go out and support our team. Kickoff is 7:00pm at Lakeside Stadium after the homecoming festivities. I am not sure if I can be there, but I know many of the guys have been following the blog. Play hard tomorrow and let's get our first W!!! Congrats to those on the court and good luck to the future King and Queen.

Turning in for the night, so we will update you in the morning. Take care all...

The Feisty Celebrity...

At about 12:00 p.m. Jenna was taken off the ventilator! What a relief...

She is moving more and more and her eyes are opening more frequently. She is responding to our voices and it looks like she is trying to focus the best she can on us. She is most likely very sore in the throat, so the loud cries we heard before surgery are not here...yet, we're sure!

Every person that comes in contact with her uses the same word to describe Jenna...feisty! We know we are in for a real treat with her and frankly, we cannot wait!

Plans are to have Jimmy come up to see her today. We are thankful he will not have to see her with the tube in her mouth. These two are going to be a real pair!

She still looks pretty comfortable, and has a new pink binki. They have not given her any more morphine and may just use Tylenol for any pain she might have. Apparently, the incision area is the most painful and they have put strips near the site which are medicated and help with that pain. Janice and I could have never expected our little girl looking this good a day after heart surgery. We certainly visioned much worse. I will try to post some new pics late tonight or tomorrow.

I will check back in with all of you later tonight...and again, we cannot thank you all enough for your prayers...keep em' coming!

Fighting Like A Herald...

You know I had to get a Herald reference in here somewhere!!! We arrived this morning just in time for doctors rounds. She had another good night and continues to cruise along. Jenna is now off of the morphine and beginning to come around. The vent continues to be turned down as the morphine wears off. Morphine decreases respiration, so as this gets out of her system, her breathing continues to improve.

The great news of the day is since she is doing so well, they think they are going to get her off the vent today! She is sucking away on the vent lines as she was on her binki before surgery. She has been moving her legs and hands...another good sign as lower body paralysis is another concern from the surgery. The spinal nerves are close to the area of surgery, so yet another hurdle cleared.

They are talking about beginning feeding tomorrow depending on how she responds to being off the vent. When the tube is out, we will also have a better understanding of whether or not the vocal nerves were bruised. This may also effect the feeding process.

Another good night, another good start to the day. Janice and I are holding our own. Hard to sleep even when we do get a chance just knowing what is going on here. The entire staff of the Clinic and all of the doctors Jenna has been in contact with since Monday are truly heroes in our minds. Please continue to pray for Jenna and her caregivers. Include in your prayers today all of those effected by the 9/11 attacks seven years ago today. God Bless us, and our wonderful Country.

We'll check back in later today...

Surgery Day Comes To A Successful End...

Janice and I cannot believe how fast today went. It seemed like an eternity to get to this point, and what a relief to have this first hurdle over. We just left the hospital a little while ago. Jenna is being kept comfortable with little movement for obvious reasons. They are planning on weening her off the vent slowly over the next few days. As she comes around, she will again be a handful I'm sure!!! We just cannot wait to hold her again.

We got the preliminary report today from University Hospital, where her chromosome test was sent. It does look like Jenna has Turner's Syndrome. The Clinic is doing its own test and those results will be more comprehensive.

Doing a Google search returns over 3,000,000 sites with info about this syndrome. We have already been warned about what is out there, and we wanted to pass this along to you. Some sites are very good, other portray worst case scenarios. The doctors are going to recommend a few sites to us and we will pass them along in the blog to those who may be interested. In a nutshell, Jenna may be shorter than others, may have hands and feet that are swollen and may have a lower hairline in the back than others. Physically, these are about the only differences.

Internally, we have to be careful of infections now that she has had heart surgery. We have to watch for urinary tract infections because of the horseshoe kidneys. She will have more testing than others but only because she has been diagnosed and this was caught so early. Some tests that are never done on other for minor things may have to be done on her as precautionary measures. Many girls (this syndrome effects 1 in about 2500 females and only females) are not diagnosed until their teen years when they are a little shorter than others, or take a little longer to hit puberty. Because we know this so early, there are things we can do to minimize these effects, like hormone therapy if we choose. We are a long way from that, and do not have enough info to even determine if this is a course we want to take for her... Once the heart is healed, we'll deal with the rest.

Developmentally, there does not seem to be any issues. We can deal with physical and I'm sure we would deal with mental issues if there were any. It is just one less thing for us to worry about.

What we find most puzzling, as do the doctors, is despite the very positive outlook these baby girls have, between 90% - 95% of babies with this syndrome result in miscarriages. So this tells us one very important thing about our Jenna... she's a fighter, and going to have the horns just like her brother!!!

Thanks again for all the messages and prayers. Janice and I feel so good reading your posts and hearing from you all. We hope to have her home next week, and will continue to keep you posted daily.

Post Op...

Jenna got out of surgery around 2:30 p.m. and we got to see her around 3:10 p.m. Cardiac surgeon said everything went really well. Repair has been made and pressures looked good in the extremities. Some of these were low because of the defect in the heart, so good pressures mean the repair, so far, has been successful.

Two nerves they are always concerned about are the vocal nerve and the nerve to the lungs. Both were isolated and moved out of the way and the surgeon does not think they were bruised. If they were, it will be a little longer recovery. We will not know this until she begins to come of the vent.

All in all, we are holding up. I think Janice and I expected her to look much worse than she does. It is not easy to see this little baby girl motionless and on a vent, but I think we envisioned her being all wrapped up, bandaged, and tubes coming out of everywhere. Thank God this is not the case. She has been poked and prodded, but looks good. There is some swelling which was expected because the pressures and blood flow change so much during this surgery.

Again, thank you for the prayers and kind words...there is no doubt in our minds that her success so far is a reflection of the support you are giving us.

We'll update again later tonight...

Surgery Day...

Well the day of surgery is here. Janice and I arrived here at around 6:00 a.m. to see Jenna and to hear from her cardiologist, anesthesiologist, and a bunch of other "gists" that would be taking care of her.

Her nurse said she had another good night, with a few "newborn moments" ...those are fun! I had a few of them the first night. Mostly because she is hungry. She has only been allowed to eat once, right after she was born. Janice was able to nurse her. Not sure when she will be able to "eat" after the surgery is done. It is so hard not to be able to hold her and make it better. Janice and I got to hold her for a little while after she was born, and before the testing began on Monday.

It's around 10:45 a.m. and the nurse just came and told us they are getting close to starting the actual procedure. Although the surgery takes four to six hours, the actual repair takes about 30 min.

Thanks again for all the prayers and messages...everyone has been so wonderful. We're all on auto-pilot this morning...everything is so intimidating when a newborn is involved. We'll keep you posted...

Here are some pics we took this morning... The "yellow" on her chest was from the wash they use for prep...not jaundice which we thought when we walked in. Jimmy had it when he was born and had to have a "Billy Blanket" at home to get rid of it.

A Day Of Tests...

I stayed with Jenna over the night, and as you can imagine, this new dad heard everything! Every beep, whimper and discussion. She did really well. She hates to be bothered and not a fan of diaper changes! We had been waiting for her to pee for quite some time and she finally did. overnight. This was another concern because there could be kidney issues as well. She has a consistent output so this is good.

Tuesday brought on an onslaught of testing for Jenna. Many of her counts were perfect, calcium was a little low, not uncommon and she has been getting supplements to raise it. It was normal by the end of the day. It's so hard to see such a little baby, not to mention your own, going through all of this, but the staff has been wonderful and taking every step to keep things as pain free as they can be.

One of the tests we are waiting for is the chromosome test. This will determine whether or not Jenna has Turner's Syndrome. It exists in girls when only one "X" chromosome is present. Boys have X, Y and girls are X, X. Jenna could be X,0. The rate of "deletion" of the other X is what they are looking for. Deletion is common, in everyone, but with this syndrome there are other complications such as the heart condition. An ultrasound of her kidneys reviled she has a "horseshoe kidney." This means the kidneys are fused together and shaped like a horseshoe. Again nothing big, something to monitor. So at this point the heart is the big concern. The chromosome test will just confirm or rule out the possibility of Turner's Syndrome. The surgery would be needed regardless.

I was able to get Janice up to the Clinic by 12:00 p.m. to see Jenna. It was hard leaving the hospital without our newborn, but we knew she was in great hands and in the best place possible. Janice stayed with her all afternoon and I headed to Ashtabula to see big brother Jimmy, and check on things. He has been doing well playing with his cousins and being the crazy boy he is.

The nurses really wanted us to get home and get sleep. We were told the surgery would take place on Wednesday September 10th at 8:00 a.m., so they assured us she would be fine and we headed home to sleep in our own bed for a night. It was great to be home and get a few hours of sleep.

We will head back to Cleveland early in the morning to see all the doc's and see her off to surgery. She had another great day and is starting to get used to her surroundings. We'll keep you posted as we hear from the doctors.

How It All Began...

On Monday September 8, 2008 at around 8:00 a.m. Jenna Ashley came into the world and made her presence from the start. Janice woke me up at around 5:15 a.m. and said her contractions had started at about 3:00 a.m. The doctors said she should come in when she called. We arrived at Lake East Hospital around 6:00 a.m. and she was already at 5cm dialated (the goal is 10cm) and by 8:00, here she was!!! 7lbs 5oz, 19"...and a real pistol. Wonder where she gets that???

She was born under "code pink" because the doctor noticed meconium, and they needed to get her airway clear of any that may have entered...nothing big, happens all the time. Funny that it was a code pink, because her brother has always said if we had a "girl baby," its name would be "pink." Of course he also said she would live in the treehouse...which we do not have. The mind of kids...

The doctors noticed, as we did, she had swelling on her hands and her feet and a few other features that tipped them off to do a little more investigation. Some of the symptoms they saw suggested Jenna may have Turner's Syndrome. Our doctors were absolutely fabulous, and ordered an echo cardiogram because one issue with the syndrome is heart conditions. The really scary thing is we could have taken Jenna home and never knew this condition existed... We do not even want to think about that!

The echo was sent all over the place and within seven hours of her birth, Jenna was on the Life Flight helicopter headed to the Cleveland Clinic. They noticed she had a narrow aortic arch, and would require heart surgery. We had a doctor drive in from Hillcrest Hospital to Lake East and explain the procedure and what was going on. He was wonderful to us and really gave us the "big crayon & coloring book" explanation.

Although they released Janice on Monday, we convinced her to stay at Lake East and get rest. We knew the next few days were going to be long and tough. I headed up to the Clinic with my parents to see Jenna and spend the night with her. She was admitted into the cardiac PICU. What a place. The doctors and nurses have been incredible. Many were stopping in to "see the new baby," and she has already won the hearts of so many. Other than her hands and feet, she looks and acts like any other baby. She slept on and off all night, and already is hooked on the "binki" just like her brother.

So that is how it all began. We have been overwhelmed by the prayers and calls of support for our new little baby. I decided to get this thing up and running because it will be a long few weeks and we want to keep you informed. There will be time for us to update the site because there is wireless access throughout the building and we can even do it from the room. We'll keep you updated as we can, and please keep the prayers coming!