Upper GI And ENT Visit...

Hello again everyone!

Jenna has been on a few journeys to the Cleveland Clinic since the last post. As you may have read, she has been spitting up quite a bit and very irritated when eating and at different times of the day. Some is obviously normal baby stuff, some is her father in her coming out, (like he does when watching a Council meeting!!! UGG!) and the rest is just Jenna.

She had two upper GI's done this month. The first...well, let's just say she didn't like to much. The second went perfect. Nothing abnormal to report. While we were up in Cleveland, she also saw an ENT. (Ear, nose and throat doc) Jenna's nose is slightly pushed back, which makes for a smaller nasal cavity and sinus area. Because of this, she has been snorting while eating, which we thought could be a reason for her spitting up. They did a scope on her, through the nose and down to the voice box...parts of my daughter I do not care to see again. The verdict: swollen adenoids. Turns out, the reflux is agitating her adenoids, and if she is upset this causes mucus to build more rapidly. With the smaller sinus cavity, this leads to the snorting. Believe it or not, we are giving her eye drops in her nose to help rid the swollen adenoids.

Jenna also has a geographic tongue. We always wondered what the heck that was in there...this girl is still a mystery to us! Every visit to Cleveland brings something new. I don't think we should visit anymore!

She got to spend her first night in a hotel...next to the Clinic, of course. We headed up last Thursday night to avoid the ice, rain and snow we got Friday.

Of course, the ENT we were suppose to see at 9:45 a.m. was in an emergency surgery, so we saw the nurse practitioner instead. They said we had to do this and that and reschedule; at which point dad nicely stated it needed to be done today while we were here. All of the sudden, we had an appointment for an exam from a partner ENT and the scope at 3:45 p.m. We headed down to her upper GI at 11:20 a.m. This lasted about 35 minutes. Surprisingly, Jenna loves barium. She normally takes 2-3 oz of formula...she took almost 4 oz of this stuff and kept it down!!! Of course, the next bottle of formula came racing back at us. Yet another mystery, but leading us to believe there may be a food allergy going on here.

We were able to spend some time with a few friends not in the best of circumstances. John Buskirk, one of my assistant football coaches and a great friend since high school, is on his third battle with Leukemia. He is an amazing person and one of the strongest people I know. I have set up a blog for his family as well. They did it by e-mail the last two times and this has been easier for them. His wife, Jessica, e-mails me the info and I get it up for them. The blog is www.coachjbuzz.blogspot.com. Please keep him, his wife who is expecting twins, and his family in your prayers.

I hope each and every one of you has a very Merry Christmas and a happy New Year. We are certainly counting our blessings. Have a safe and relaxing time with your loved ones. Hope to have some Christmas pics up this week.

A Little Baptism, A Little Heart Burn...

My Pretty Baptism Outfit...

Pre-Baptism In The Cry Room...
(Big Brother In The Background)

Godmother Auntie Jamie, Godfather Jim Severino, Mommy and Daddy

Hello again everyone!

On November 23, 2008 we baptized Jenna at Our Lady of Mt. Carmel Church. Father Ruggieri performed the ceremony and unfortunately for him and the rest of us, Jenna's time in the cry room before the baptism was the only time she wasn't crying. It was a great day regardless. We all went to my parents house after for a great party.

Jenna has been a little under the weather. Not with a cold, but some digestive issues. She has been spitting up constantly and in large amounts after eating. She is not losing weight, but not putting it on as she should. You can tell she is in some pain during these episodes.

We took her back to Cleveland to see another "gist"- the Pediatric Gastroenterologist. There are links to some issues with digestion related to Turners babies. They want to do an upper GI to see if there can be something going on in there causing this. She is on Pepcid, and it has been doubled with little relief. It has been frustrating, especially for Janice who has had to deal with her all this time, to see Jenna like this. The procedure is scheduled for the 16th, but we are trying to get in sooner. Also going to try the chiropractor this week. It has helped others we know.

As you can see by the pictures, she is smiling and happy some of the time. When her tummy is bothering her...look out! This girl has strong lungs.

Janice went back to work Monday and Jenna has been going to Grandma and Papa's house while we are at work. Jenna gets an earful from Grandma all day, we're sure. They have been a huge help through all of this and Jenna is going to continue to go there until after Christmas break.

Yet another hurdle to jump over in her short 3 month life...but life goes on! We will check back when there is more to report.

Hope everyone had a great Thanksgiving and spent money...LOCALLY! (That's the Chamber of Commerce talking again!!!)

Just a note on this terrible economy; The National Retail Federation reported:
"Though the holiday season is far from over, retailers across the country are breathing a collective sigh of relief after shoppers headed to stores and websites in droves over the weekend. According to the National Retail Federation's 2008 Black Friday Weekend survey, conducted by BIGresearch, more than 172 million shoppers visited stores and websites over Black Friday weekend, up from 147 million shoppers last year.*

Shoppers spent an average of $372.57 this weekend*, up 7.2 percent over last year’s $347.55. Total spending reached an estimated $41.0 billion."

Not too shabby!!!

I'm Still Kickin'...

Big Brother and Jenna playing on the floor...

Halloween Outfit #1...Ladybug

Halloween Outfit #2... Pumpkin

Yep...I'm Smiling

Hello again everyone! Two months down...and still growing!

Sorry for the long departure from the blog. Dad and Mom have been busy. Jenna is now on her 4th formula. We've been spitting up quite a bit over the last month, so now she is on pepcid and this special concoction that seems to be working. No Frank's Red Hot for a while.

Jenna is hitting all the milestones she should be at this point. Holding up her head, smiling, making eye contact, still working on the baby talk. She continues to be the feisty one...very demanding! Wants to eat when she wants to eat. Wants to sleep when she wants to sleep. Wants to be held....well, all the time!

All her appointments have been going well. She just started the rounds of vaccinations for the two month mark which always make us nervous. I am especially not a big fan of vaccinations...no flu shots/mists this year! Just too many unknowns, and too many things being ignored as "one in a million chances." Many of you may recall my niece had a life-threatening reaction to the MMR shot, which has revealed so many things about vaccinations to us. So lots of holding our breath coming up...

As the snow falls today, and Jimmy insists we head outside, I thought we would check in and let you all know how we have been...and it is going great! (he fell asleep in our recliner so Dad's off the hook for now!) Still getting used to two baths, two kids waking up at night, two diapers to change...Jimmy wants no part of the pottie yet.

Enjoy the snow, I we'll check in again with new pictures.

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!