Wednesday, July 21, 2010

The Countdown has begun

Jacob went for his last cardiologist appointment before we leave for Philly. I thought I would share photo's of his Cardiologist and staff since they are such a special part of our lives. Jacob loves Dr. Heydarian and so do I. He has been so amazing to Jake and he spends so much time with us to make sure that I am aware of exactly what is going on inside of Jacob and how he is doing. He always has a big smile and calls Jake his buddy.

I feel honored that Dr. Heydarian took Jacob as a patient. He is retiring next year and did not have to bring on such a complicated child yet he knew what we were facing and was there to help. Dr. Heydarian is battling a fight of his own. His wife is ill and it is so hard for him to leave her but he also says that he can't leave his patients without a doctor. This man has a heart of gold. I am asking that everyone here also say a prayer for his wife. Please pray for her comfort and healing.

Jacob's Appointment
Our day at the cardiologist begins with Diedra. She has been so sweet to us since day 1 when I called during my pregnancy with Jake. She arranged it so I don't have to wait in any waiting rooms. I come right in and she gets us in a room so Jake won't have to be around any other children.

Diedra and Jake

Then off to Bert we go! Bert is Dr. Heydarian's assistant. She is such a sweet woman. She has a grandson who is 3 days older than Jake and she told us that Jake actually weighs more! Oh by the way he weighed in at a whopping 13pounds today! WOW!!!!! He amazes me daily.

My not so little peanut and his buddy Bert

Then it is time for Bert to do the EKG. This is done at every appointment. Bert is very gentle and Jake does not mind it at all. Well the binki dips in the apple jelly help a little.

First come the stickers...

Hey guys pink really is not my color.

Then come the leads...

What in the world are they doing to me?

Bert is always so gentle when removing my leads. I don't fuss a bit, see I am smiling!

Last but not least I get my blood pressure and oxygen saturation checked...

All looked good for Jake today so on to the main attraction... Dr. Heydarian!

Big Smiles for Dr. Heydarian!

Jake's heart sounded good (For Jake of Course). His shunt was wide open and loud. Jake was wild today during the appointment. Kicking and wiggling around like crazy. Smiling and talking. He is such a ham now I love it. Between him trying to talk to Dr. Heydarian and his loud breathing I have no idea how he hears Jake's heart but the man is so good at what he does. I heard from so many people that he has an amazing gift and hears things that most doctors miss. I heard many stories of how he saved local babies by catching defects. I can now say that he not only lives up to his reputation but exceeds it. He has spent so much time with us and you can see that he genuinely cares about Jacob. Thank you Dr. Heydarian!

The visit ended with a quick photo-op for Jake's baby book.

Dr. Heydarian... I am not so sure I like this going back to Philly idea

The visit went well. Dr. Heydarian said that babies generally do very well with the Glenn. I voiced my fear of him needing a lung transplant. He said he did not worry about that or think that was the case. He is glad we are seeing a pulmonologist but said he thinks that his breathing is related to his septum becoming intact two hours after birth. If we had opened up the septum earlier this may have not occured however heinsite is 20/20. Cincinatti, CHOP and Boston all thought his atrial septum would be ok. His heart echo was decieving.

It is what it is and there is no going back in time. Now we can only pray that his lungs will heal. Most likely he will need to go on some sort of steroid. This would be something we are oh so familiar with. Aidan has asthma and has been on daily breathing treatments for years. We recently were able to wean him off for the summer but he will most likely have to go on them again come fall.

Please continue to pray that Jacob's lungs will heal.


Monday, July 26th:
Andy's Stepmom (Mimi), Jake and I begin our journey back to Philadelphia. Jake does not like the car seat so this should be fun. We are stopping in Morgnatown, WV to stay overnight thanks to Kim Corbin. She was so generous to use her reward points so we would have a room there. I like to stay there because Morgantown has a Children's Hospital. So again, Thank you Kim!

Tuesday, July 27th:
We finish the rest of the trip and pray we get a room at the Ronald Mcdonald House. I put our name on a list but we will not be able to call to see if there is a room available until that day. We booked a hotel room that night just in case. Hopefully we will get a room at Ronald and we can cancel the room at the hotel. It would be way to expensive to stay at a hotel the whole time. We just can't afford that right now. So please pray a room opens up.

Wednesday, July 28th:
Pre-Op appointment with Dr. Szwast (Jake's cardiologist from Philadelphia). They will do a heart echo, a chest x-ray and possibly a MRI. They said Jake will not need a heart cath because the one we had 2 month's ago was reassuring enough that they don't feel it is necessary. If they are concerned by any of the tests we will have time to do one if needed but as of now Dr. Spray said we can skip that.

Thursday, July 29th:
Visit with pulmonology. This is the appointment I fear. I am not sure what they will be able to do since Jake will have surgery the following week but hopefully they can give us some insite into why he continues to have problems with his lungs. Pray, Pray, Pray!

Friday, July 30th:
Hang out with Jake. Maybe it will be a nice day and we can take a walk!

Saturday, July 31st:
Grandma, Grandpa, Daddy and Aidan arrive! We get to spend the weekend together as a family before we start this next step in this new journey.

Wednesday, August 4th:
SURGERY DAY! Please pray for strength for Jacob. Please pray for a smooth surgery with no complications. Please pray that his lungs can withstand bypass and the fluid that may occur within them. Please pray for a speedy recovery so that Jacob is able to come home and heal. So that he may thrive like he did when he was finally able to come home from his Norwood. Please Pray for my strength and for my family as this will be even harder now that we have had life at home with Jake. It will be so hard for me to kiss my baby and watch them bring him through those doors. Please pray that he is extubated quickly and that his pain is well controlled. Please Pray.

Letter to my sweet boy...

Where do I begin. Jacob you have taught me more than you will ever know. Your strength and your will to live is beyond anything that I ever knew existed. You have opened my eyes to a new world. Not one I would have chosen but one that I now embrace. I love you so deep to my core. You teach me what it is to live, to love and to truly be happy. You are my inspiration. Jacob I promise to always be there for you. To hold your hand and tell you it will be ok. I will never leave you. To me you are perfect. The light in your eyes goes deep into the soul of anyone who meets you.

You have shown me an amazing bond between you and Aidan. You two look at eachother and smile as if you are already scheming against me lol. You are teaching eachother about compassion and the bond of brothers. You make me so proud. You and Aidan are the best children in the world and I am so blessed to be your mother.

People hear about our situation and speak with pity and sadness. I tell them please do not be sad, I am not. I am so happy. You may have half of a heart but you complete my life. I hate that you have to endure this but you are happy and that is my dream for you. I know that I have made the right decisions for you and I can't imagine not having known you. I will continue to fight for awareness so that other mother's facing this diagnosis are given hope. No it is not easy but it is worth it. You are worth it. And you are happy, happy... my beautiful blessing.

Thank you for being mine.

My other sweet baby boy Aidan!
The best big brother in the whole world!

Aidan took this picture. He is 3 years old!
I have a future photographer on my hands

Hanging out with dad

Aidan and Mommy playing with the camera

Loves looking at those hands

1 comment:

  1. Love the blog Kathy. You, once again, brought me to tears. I love you guys. Jake will do great in Philly. Take care of yourself and give Christina a big hug from me when you see her.