Jasper is 8 months

Its been a while since I posted an update on our little Jasper. He is 8 months old now and an absolute joy. He had a check up about 3 weeks ago and the doctors couldnt believe how big he got and how well he is doing.

I got him caught up on all of his vaccines and he is 17 pounds now. Still small for his age but he is growing and thats all that matters.

He has 2 teeth and he army crawls all over the place. He is so fast and keeping me fit because I have to run after him.

I thank God everyday that he is taking such good care of my little boy. He is growing and very very happy.

We love you Jasper

For All Heart Mommies :) :)

For all heart mommies ;) ;)

It can happen during utero,
Or sometime after birth.
The news that makes you tremble,
The news that shakes the earth.

"we hear a distinct murmur ma'am,
There's an issue with the heart
We're not sure your child's chances ma'am,
It's going to be a rough start"

You think "why me? Why us?"
As you try to choke back tears
Your world crashing around you,
While you're consumed by your worst fears.

That sharp pain in your chest.
The heart break, like a knife.
Watching your precious child
Fight so hard for their life.

The first few months are brutal,
You walk around like a zombie.
Endlessly wondering
"will my baby get to call me mommy?"

"don't worry, it will get better"
Is something you can't stand to hear.
It feels like everything is getting worse!
The end, it feels so near.

Then suddenly the days,
Seem to get a little brighter.
As you stare with loving eyes
At your precious little fighter.

You've never been so proud
Of one single little soul,
Gradually reaching milestones
And accomplishing their goals.

A heart moms journey
Is one that never ends.
Filled with support and compassion,
Of other heart mom friends.

We all love a little deeper,
And care a little more.
Reminding ourselves everyday,
Of how much we can be thankful for.

We were given this life for a reason,
And at times it can get rough.
But we use our kids as examples,
Of how to remain tough.

For us, strength is not a choice.
It's a lifestyle we have to lead.
It's what keeps us going,
And it's what our heart child needs.

Written by a proud heart mom, Adrianna G :)

https://www.wepay.com/donations/jasper-s-medical-fund

6 Month Update

Jasper is almost 6 months old and doing really well. He is sitting up and playing and laughing just like a little boy should. I am doing better dealing with the fact that my sweet boy has a heart problem. During and after the surgeries was the hardest time of my life. I dont think anyone knows how I felt or feel except the mommies and daddies that are going through the same thing. Even tho Jasper is doing good and his appointment are going well I find myself listening to his breathing and checking if he is breathing through the night. Its a hard way to live but if I dont I get anxiety. It really is no way to live but I cant help myself. I love him so much that it takes my breath away. Sometimes I am so mad at God for doing this to my little boy letting him go through all this pain BUT then I also remember that God has been with him and guiding him to safety. God has a plan for him and my family and He will not give us more than we can handle. Please continue praying for our sweet little boy. Still accepting donations to go toward his medical fund.

We love you so much Jasper

https://www.wepay.com/donations/jasper-s-medical-fund

Baby update on our amazing boy

We has an appointment this week with Jasper's cardiac pediatrician and she was amazed about how much he has changed. He is 5 and a half months old and he weighs 14 pounds still in the 10th percentile for weight but he went from 5th percentile to 10th so we are very happy. He is doing great and we don't have to go to see her again for 2 months. End of the month he has an appointment with his regular pediatrician and will get his first round of vaccines. I hate that he is going to be poked but we want him not to get sick and end up in the hospital. He hasn't rolled over yet but the doctor said it will happen soon because he keeps going to his side so a little more practice. No teeth yet all though he is drooling like crazy and gets crabby cause his gums hurt so I am sure they will be coming soon. He laughs a lot and talks a lot and for someone that has had so much pain he is very happy and cheerful. I am so thankful to God for being with my baby. We are still collecting donations for his medical fund so please share the link.

Mommy and daddy loves you very much Jasper.

https://www.wepay.com/donations/jasper-s-medical-fund

5 Months Old

Jasper is 5 months old now and it has been 2 months since his Glenn Surgery. He is doing really well. He was having a lot of bad dreams that would make him scream in his sleep but it has stopped and I am very grateful for it. He smiles a lot and is a very happy baby. He started teething but no teeth yet. He doesn't roll yet so I am a little worried about that but because of all the surgeries he is a little behind and he is doing great with everything else. He eats rice cereal and some baby food. To my surprise he loves green beans. We still have a lot of doctors appointments but for now we are just living a normal life. He makes us smile and laugh everyday and he has so many people loving him and supporting him. We have a donation site set up for Jasper to help with his medical bills. Every little bit helps. Please share it and support it. Thank you so very much.

Mommy & Daddy loves you very much.

https://www.wepay.com/donations/jasper-s-medical-fund

3 Weeks Post Glenn

Its been 3 weeks since Jasper had his Glenn surgery and he is doing great. They where a little concerned because he wasn't gaining weight but since he has been home he has turned into a little piggy. He was having scream attacks whenever he was sleeping and when I talked to his doctor she said that it wasn't because of pain but more trauma because of what he went through. But he is doing so much better and the screaming stopped. He has even started eating some rice cereal and we are going to try something else too like sweet potatoes or something. He is doing so great and we pray and thank God everyday. He is still on medications and those will go away with time and we still see the doctor a lot but that will also become less and less. I have such a relief within myself that he is home and happy.
We are working on rolling over it is going good but he still struggles a little. He talks so much and laughs when daddy plays with him. For everything that he has been through he is such a happy baby and he makes us so happy.

We still ask that you can share his story and this link. We appreciate everyone that has helped us. Thank you for all the prayers and support.

https://www.wepay.com/donations/108761

Glenn Surgery

On April 3rd Jasper went in for his Glenn Surgery. We got there at 6am and they did some vitals and made sure that he was ok to have this surgery. They started at 7:30am with anesthesia and getting all the IV's in and started a central and arterial line in. When they where all set they started opening him up which took a little but because of the scar tissue that formed from his previous surgery. When his heart was exposed they put him on heart and lung bypass and preformed the Glenn ( involves connecting the superior vena cava to the right pulmonary artery thus taking the blood straight to the lungs for oxygenation without going through the heart. This increases the blood flow to the lungs and decreases the work of the heart. It will not work where there is pulmonary hypertension as the blood has to flow without the force of the heart pumping.) He was out of surgery at 3pm and they where able to remove the breathing tube right afterwards which is a really good thing. We where able to see him around 4:30pm and he looked so good. He was hurting but they kept his pain under control and he was sedated still which helps them control his pain. The next day he was still out of it but started to become more like himself, he was able to eat and he looked at us but went to sleep again. I prefer him sleeping a lot because then he can heal faster. I am hoping that today they can take the chest tubes out and all the lines he has in  his hands and neck. I know that he needed this surgery and I know that he will do so much better now I just really want him home in my arms. I thank God everyday for being with my little boy and I want to say thank you to everyone for your support and prayers.

Mommy & Daddy loves you little boy

https://www.wepay.com/donations/108761

The Next Stage

The doctors has decided that it would be more beneficial for Jasper to have his next surgery sooner than later. The date is set and he will have it April 3rd. This is one of the big surgeries and it will make our lives a little easier. We wont have to worry about how much blood is going to his lungs or body because they can control it better than his shunt does now.

The Surgery is called The Glen and this is a description : the goal with the Glenn shunt is to bypass cardiac circulation and allow some blood to get to the lungs for oxygenation, without overworking a weakened or tiny ventricle. This is achieved by taking the super vena cava, which is returning blood to the heart for transit to the lungs, and hooking it directly to the right pulmonary artery. Such a move creates passive blood flow to the lungs, completely bypassing the heart. The Glenn is considered palliation because it doesn’t fix the small ventricle problem, though it may address it for a few years. Additionally, the surgery is often part of the staging that leads to a more successful palliative surgery called the Fontan. If all goes well when Jasper is 3 he will get the last surgery which is the Fontan and he will be done with any surgeries.

We pray everyday for our baby boy and we ask for prayers from you. We know God is with him but it is still scary. Adding a couple of links to check out if you wanted more info.

Mommy loves you baby boy

Tricuspid Atresia
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002100/

Hypoplastic Right Heart Syndrome
http://chd-uk.health.officelive.com/hypoplasticrightheartsyndrome.aspx

Glenn Shunt
 http://www.wisegeek.com/what-is-the-glenn-shunt.htm

To Help our Boy
https://www.wepay.com/donations/108761

Update on Jasper

Jasper is 3 months old now and doing great. He found his hands so he has them in his mouth constantly. He can hold his head up all by himself and is starting to roll over, or at least he is attempting. He is a full 11 pounds now almost double than he was at birth.

He went in on Friday March 9th to have a  Cardiac catheterization done (involves passing a thin flexible tube (catheter) into the right or left side of the heart, usually from the groin or the arm) he did good with the procedure and it only took them about a hour. After wards in the NICU he was not a happy baby. He was crying a lot and in a lot of pain. I held him trying to get him to fall a sleep but the pain was just to much. They gave him morphine and that seemed to help after 20 min. He finally fell a sleep. Me and my husband went back home and Jasper stayed the night. We went to pick him up today and we couldn't bring him home because he has a rough night. His oxygen saturation wasn't high enough and through out the night they has to give him a blood transfusion. They where able to stop all the medication he was on and the transfusion helped getting his oxygen level back up. So they are keeping him one more night to make sure he is ok and then he can finally come home tomorrow.

I hate leaving him there all alone in that big room. I couldn't stop crying and I just want my baby back. But I know God is keeping an eye on him but I would feel a lot better when he is home. I miss him, feels like a part of me is missing.

Baby Jasper

This is the story of a brave little boy over coming great obstacles. We hope that his story would help and inspire family and friends and all the other brave boys and girls that are sick and need a little encouragement. 

 Our Journey began August 2011, I was 22 weeks pregnant and at the ultra sound to find out the sex of our baby we got a little extra news. I was told that there was something wrong with my son's heart but that I would have to go to a high risk OBGYN for a level 2 ultra sound so that they could see his heart more clearly. I was devastated and I must have cried for a few days straight. The day I went to the ultra sound to find out what was wrong with his heart was one of the scariest moments of my life. We found out that he has Tricuspid atresia (which is where the tricuspid heart valve is missing)  and that caused an underlining problem called Hypoplastic Right Heart Syndrome (Where the right ventricle of the heart fails to grow and develop appropriately)

I was given the option to terminate my pregnancy but it was a option that I wouldn't choose. I saw his face, picked out his name and started his baby room. He was already my everything and nothing would change that. The only thing that made this a little better was that the doctor told me that there was nothing I did or could have done to prevent this. It was mother nature that messed up. The next couple of months was just me going to a lot of doctor appointment making sure that he was growing and that there wasn't anything else wrong.

December 8,2011 was the best day of my life I welcomed my 5 pound 14 ounces baby boy into the world. I got to hold him for a couple of minutes before they had to take him to the NICU. They where hoping that he wouldn't need the first part of the three part surgery but after a couple of days it was decided that he needed it so that we could wait till he is older for the second part. So when my little fighter was 4 days old he had is first open heart surgery to place a BT shunt in his heart to help enough blood to get to his lungs. He did great in the operating room and he healed so beautifully. After a month in the cardiac NICU he was finally well enough to come home.

He has been home for two months and his three month birthday is coming up soon. We are preparing for his second surgery and then when he is 3 years old we will have his last surgery and we can begin his journey of a happy healthy life. It is amazing that a person so little can be such a little fighter.

Our Little Family

Hi

I am AnneMarie and I am married to Bobby. We recently had our bundle of joy, baby boy Jasper. A couple of months before we had him we adopted our first boy a puppy Jake. We are a small little family but one of the best. My husband works a lot and I am a stay at home mom for now until Jasper gets better. Just a little intro to our family and I will be writing more very soon.