Thursday, July 29, 2010

What A Relief!


Jacob went to his pulmonology visit today. I had been dreading this appointment for fear of what they would say. It could not have gone better! His doctor spent an hour and a half with him. She was so amazing. She did not run any tests just listened to his breathing and looked over past x-rays and tests that had been run the last time he was at CHOP.

She told us she has seen many kids with the "Strider" sound that Jacob makes. She said it is commonly seen from intubation and also from reflux. Jacob has both! He was intubated for 2 weeks at birth and 3 other times for other procedures. She also said that the retraction should also go away with time.

They had done a study when we were here before and found that his esophagus was "Floppy". This was aggravated by the vent and the reflux. This floppiness causes the strider sound. It should get better as he gets older however there is a medication called bethanechol which can help tone his esophagus. The fact that when he sleeps he makes no sound also points to it being from this. His esophagus is relaxed while he is sleeping. The pulmonologist also said she recommends we increase his prevacid which I had wanted to do anyway. She increased it to twice a day instead of once. She also recommended atavan, an inhaled steroid.

She wanted me to run all of this by his cardiologist first. Dr. Szwast agreed with upping his prevacid and said that the bethanechol to tone his esophagus was ok. She does not want him on the atavan prior to surgery so we will revisit that later on.

It was so nice to hear from a specialist that she was not worried about his lungs. She said there was still a little fluid there and that should go away as his heart is repaired. We won't fully know if it will resolve on its own until the repair of his heart is complete. The fact that he is gaining weight so well, not sweating when he eats, thriving is all very positive that he will be ok. After his Fontan if he is still having a lot of difficulty they can do a Cat Scan and other tests to see what is going on. She is pretty confident that this is all a fluid issue and from the vent not from lung damage.

They want to do a follow up in 4 months however I explained we were not from the area. I told her we could go to Cincinnati. She said they have the BEST pulmonologists and she highly recommends Cincinnati Children's Hospital. She said to call her when we get set up with them and she will send them all of our information. It was good we went today because if Jake has any problems while recovering from his Glenn she said they have his file and can come right over for a consult.

She thinks Jake is much stronger now and he has proven 4 times that he can handle anesthesia so she thinks that he will be fine for this surgery as well.

We still can't get into the Ronald Mcdonald House but I am calling daily trying to get a room.
I can't tell you how relieved I am that today went so well. Please continue to pray for Jacob, the prayers are working!

PINK FOR MIA!
Here are some pictures of Jake and I showing our love for Baby Mia Grace Marrone who lost her battle with HLHS on July 25th. Mia was a heart buddy of Jake's and she will always hold a place in our hearts. We wore PINK today to celebrate what would have been her 3 month birthday (Jake has on a pink bracelet to show his support!). We love you Jenni, Ray, Cole, and baby Madden.


Pink For Mia

Mia Grace Marrone
April 29, 2010 - July 25, 2010

Please wear pink today in memory of Mia Grace Marrone - it is her 3 month birthday.

...She fought a courageous battle against HLHS in her short 87 days of life.

You can easily participate in making this memory for her parents.

Let's show her parents, Jennifer (Cordes) & Ray Marrone, how many lives a 3 month old can touch!

Take a picture of yourself wearing pink (shirt, outfit, headband, tie, etc) - include your kids, dog, cat, entire family! You can choose to hold her name written on a piece of paper or you can get creative and spell it out however you like... take a picture of that, too! Please just participate!

Please email all photos to PinkforMia@gmail.com

{All photos will be assembled in a photobook}

Please invite ALL of your friends, regardless of whether or not you know this family personally - let's make this HUGE! Post it as your facebook status, tweet about it, blog about - just get the word out!

If you'd like to learn more about Mia's journey with HLHS, you can read it here: http://miagracesheartjourney.blogspot.com/

Personal Note: I had the honor of meeting Jenni and Ray on Facebook and going through this journey with them. We met up at CHOP and I consider them dear friends. Mia was a twin. Her brother Madden has a healthy heart.Jenni and Ray also have a little boy named Coal. Mia was the Rock Star at CHOP and was home very quickly. Her passing came as a shock and she will always hold a piece of my heart. I love you Marrone family and will always be here for you. Fly high with the angels baby girl and send your parents love and peace as they walk this journey without you. One day you will be reunited but until then you will always be in our hearts!

Adventures in Philadelphia


Pre-Op Testing...

Jacob had a busy day today. He started out the day pretty fussy. I think his belly was hurting him again. Off to CHOP we went for his cardiology appointment. I was full of emotions entering the hospital again. Although I know they saved Jake's life I couldnt help but to have a dreaded feeling of the unknown. It was almost like I had never left.

First we had his weight, blood pressure and SATs checked. He was a little over 13 pounds (without a diaper). Back home he weighed 13 pounds last week with a diaper. So he is still on track weight wise.

ECHOCARDIOGRAM:
This did not go over so well with Jacob. He started out ok but when she went to his neck to get the pulmonary vasculature and the shunt he screamed bloody murder. After about 10 minutes of screaming, I finally had to tell the tech that he needed a break and I held him until he calmed down. This kid was a trooper though and they finally got everything they needed.


MEETING WITH DR. SZWAST:
After the echo Jake had his normal EKG and we met with Dr. Szwast. She was very impressed by Jacob's weight gain. She said that most hypoplasts are not even on the growth chart so it was really great that he was. She said his color looked great. Overall she seemed very pleased with our little guy... how could you not be! I expressed my concerns of his teething and tummy troubles and him being fussy. I asked if they thought he should be admitted so I can work with nutrition. Dr. Szwast was very against this because it exposes him to the hospital environment and he could pick up a virus prior to surgery. I totally agree with that. So I will talk to nutrition once we are admitted for surgery. She kept all of his meds the same except his lasix. She increased that from .5 to .6ml. She also mentioned trying to get him to take more of a bottle since I said he loved it so much. So we will definilty meet with speech and see what we can do.

CATHERITIZATION:
The news I was not expecting to hear was that Jake will have to have another pre-glenn cath afterall. Originally it was thought that he would not need one since he just had one a few months ago. It is very common practice to do cath's prior to the Glenn. Most institutions do them. They said they just want to make sure they have a clear picture of all of the pressures in his heart so there are no surprises during surgery. The echocardiogram does not give an accurate read of those pressures. An MRI would give a little better picture but still not as good as the cath will. Because Jake has always had this rapid breathing they want to make sure they know the pressures in his pulmonary vasculature. Dr. Heydarian also agreed that this is a good thing to do. So although I know he needs it, it is still another procedure and I am still nervous.

Jacob's Cath will be on Tuesday, August 3rd. His surgery will be Wednesday, August 4th. I was nervous about them being back to back but was assured this is common practice. Please continue to lift Jacob up in prayer as next week will be very rough for him.

SKIN TAG AND CIRCUMCISION:
The rest of the appointment went well. I spoke with the nurse practitioner about what to expect and went over some other questions I had. I have to wait and see if they can circumsize Jake and remove his skin tag on his ear. They are going to have urology and plastics come see me while we are in the CICU. Typically they do the circumcision before you are discharged if the patient does well with the Glenn. If not then he will have to wait until his final stage, the fontan. Honestly I just want Jake to be safe. If this is all to much for him then we can wait. I just know the earlier the better as far as his discomfort and awareness.

GENETICS:
I also met with genetics. I asked them about a chromosome test they did on Jake last time and she looked it up for me. He showed no added or deleted chromosomes. They check over 600 and he came back as "same as the normal population". I assumed this was the case since they never got back with us but it was good to hear it!

I went over some research they are doing and I think we will participate this time. Basically they would just take some extra blood from Jake through a access point he will already have for surgery. They would also take a piece of discarded tissue from his heart during surgery. It will not cause Jake any added stress or pricks since this is frome something they will already have. the tissue is removed anyway when they access the heart. They can use this to help research HLHS and the cause. Andy and I would also give DNA samples and go over our family history. My hope is we can help find some answers about this disease and maybe get some information for Jake and Aidan. One day they may have kids so it will be good to give them something as far as their odds of having a child with HLHS.

DEVELOPMENT:
Jake learned how to grab his feet today! He has been playing with his hands for a while and the poor feet were left out so MiMi introduced him to his feet. Jake was amazed by them and loved hanging on to them...



TEETHING:
Jake seems to be teething lately. He is chewing on everything and slobbering. The hands are always in his mouth. He also loves teething rings. It is hitting the poor kid all at once!



It was a long stressful day for Jake so he slept most of the afternoon. Tomorrow he will have the pulmonary consult and then we hang out until he is admitted on Tuesday for his Cath. The Ronald Mcdonald House has been full so we are at the Comfort Suites. I am praying they get an opening soon. I will update tomorrow night about his pulmonary consult. Until then enjoy some pictures.

PICTURES TO ENJOY!

Hanging out with Mommy at the Hotel...

hmm... how do I get that in my mouth?





I leave you with the best picture of the day!

Have you ever seen a more beautiful site!

Tuesday, July 27, 2010

We are here!

We made it to Philly. Jacob was great today. We stopped 3 times to give him a break. He started out fussy but was asleep most of the trip. It is so nice knowing CHOP is just down the street if we need them.

The Ronald McDonald House was full but we were able to get the Comfort Suite for a few nights. Hoping the RMH has room soon.

Jake has a busy day planned for tomorrow. He has a cardiologist appointment at 8:45am with Dr. Szwast. They will do a echo, chest xray and EKG. He also may need an MRI this week. Thursday we have a pulmonologist appointment.

I am also hoping to get with the nutritionist while we are here about his belly issues.

For right now we are relaxing in our room. Thank you for all of the prayers and support. I will update tomorrow after his appointment.

Love,
The Bakers

Monday, July 26, 2010

Safe and Sound in Morgantown



We have made it to Morgantown, WV. We decided to stay here for the night because there is a children's hospital nearby. Thank you to Kim Corbin. The room is beautiful.

Jacob did well overall. He sleep some but surprisingly was awake quite a bit. He fussed a little but did not cry heavy at all. We stopped once along the way to give Jake a little break and change his diaper. Around the 3 hour mark when we were just about here Jacob was looking a little pale and uneasy so I am glad we decided to stop here. I think 3 hours is his limit.

As soon as we got into the hotel room I checked his SATs and his heart rate and it was perfect. He is nice and pink and sleeping soundly right now.

Jake after a long road trip.

We really appreciate all of the prayers and kind words we have received. Our family is very blessed to have so many people who care about our sweet baby boy. I will post when we get to Philly and daily while in the hospital.

One final note:
I have a heavy heart today. Another one of Jacob's buddies from CHOP passed away yesterday. The Marrone family was very dear to us. Our children were at CHOP the same time. Mia also had HLHS like Jacob. Her passing came as a shock. This life can be such a hard one. During our pregnancy Jenn, Stacey, Laura and I became very close. We then met at CHOP with our children. Now baby Mia and baby Gwen were called to heaven. My heart breaks everytime I hear of a baby dying but even more so to these babies since we were so close. Please pray for their families as they go through this difficult time. Thank you.

Saturday, July 24, 2010

Tummy Troubles

Jake has been really fussy last night and today. It seems like he is acting like he did when he did not tolerated the feed increase last time. The odd thing is that he has been on 40ml/hour at night for about a week now. However he is showing all of the signs. Screams when fed. Probably because he is gassy and constipated so he feels full and the feed hurts his belly. I am cutting him back to 39/hour tonight to see if he is better tomorrow. He also has been chewing on his fingers and drooling so he may be in the beginning stages of teething.

His SATS are fine and he does not have a temperature so for now I am just keeping a close eye on him. It all seems tummy related though. He is sleeping soundly right now which is really good. If he continues to be fussy tomorrow we may just leave for Philly tomorrow night and drive all night while he sleeps. Then I could have them admit him there Monday morning and run tests to make sure he has no infection or anything.

It all makes me nervous because we are so close to surgery. I think he is trying to stall so he doesn't have to go lol. In all seriousness please pray that Jacob's tummy troubles resolve and he is in perfect health (For Jake) for surgery next week.

I am so blessed to have had that past wonderful 4 months with my sweet baby boy and I look forward to many more. I don't have a bad feeling at all. I actually feel really good about the upcoming surgery. Maybe because I am relieved we have made it to this point or because I know that Jake is strong, you see it in his eyes. Also because it will be so nice to have 2 out of 3 of the surgeries behind us and have a few years before we face this again.

I was telling Andy tonight that I have an odd feeling like I am going home. Ok I know this makes no sense because this is my home and I am SO GLAD to be here. But I also lived in Philly for 3 months and met so many great people. I look forward to seeing the doctors and nurses again who became such an intricate part of our lives while we were there. I really look forward to seeing Christina and Emma and the other beautiful children who inspire me daily with their strength. Although I know I will be sick to my stomach come surgery day, for now I just want to get this show on the road. The sooner we do this the sooner we can come back here to our TRUE home. It is impossible for me to view CHOP as a dredded hospital because they saved Jacob's life, more than once.

So with that, we are all packed and ready to go. Planning on leaving Monday. If Jake continues to be fussy and have tummy troubles we may leave tomorrow night instead. The beauty of Jakes overnight feed is he does not wake up hungry so it would really be the perfect time to go. Still hoping we leave Monday though because we have a hotel booked for Monday night (Thanks Kim). The Mountain Mission was also very generous and gave us gas cards, Mcdonalds gift cards and 2 nights at the comfort suites in Philly. Now we do not need to worry about the Ronald McDonald house being full. We definitly have a place to stay when we get there. These rooms are such a burden off of our backs. Thank you Kim and Becky so much. You guys are so amazing and generous. I hope to pay it forward one day.

Also thank you to everyone who has sponsored Team Jacob for the American Heart Association heart walk. Thank you for helping me support this great cause.

Please pray Jacob starts feeling better and please pray for everything to go well in Philly and a speedy recovery for Jacob.

Thank you as always for all of the thoughts and prayers. We hold you all dear to our hearts!

Love,
The Baker Family

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...
Seriously?

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.

Timeline:

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...

Jacob,
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

Tuesday, July 20, 2010

My Trip To Holland

This is a beautiful story about what it is like to have a child with a disability. Jacob I am proud and honored to have taken this trip to Holland with you. I love you so much.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make... See More... See More ... See Moreyour wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

By: Emily Perl Kingsley


Story of Hope and Inspiration

This is a story of a 32 year old survivor of HLHS. When he was born his parents were told he would never walk, talk or do anything. His life has not been easy but he is now a veterinarian.

Fast Forward to time slot 19:45 to watch his segment.

Thank you Brian for telling your story and giving us so much hope for our children.

http://www.wedu.org/Content/VideoPop/SH_March_2008.aspx

Jacob Laughing

Jake has started "talking" so much now. He has also started to laugh. It is so adorable.

As a parent of a sick child you worry constantly. Are they in pain? Is this what they would have wanted? Mainly you want to know that your baby is happy. Seeing Jake smile and laugh just reiterates the fact that the choices we have made for him were the right choices. He is happy, what more can I ask for. Through everything he has had to endure he is smiling! There is no better gift.

Tomorrow will be Jacob's last cardiology appointment before we head to Philadelphia. I am a bucket of nerves and full of different emotions right now. I will post a longer update tomorrow after his appointment, for now I must sleep.

I leave you with this... enjoy!

Saturday, July 17, 2010

Join Team Jacob!

Support a great cause and have fun while doing it!

The American Heart Association will be having the Start! Heart Walk on Saturday, September 18th beginning at 8am. I have started a team to help raise funds for this great cause. Of course I called our team "Team Jacob".

I know many of you are thinking that I am crazy for doing this with surgery only 2 weeks away and everything on my plate. Those of you who know me also know that I thrive on staying busy and it is actually a great distraction. Jacob's surgery is coming up very quickly. I of course am full of anxiety about that. This walk gives me a positive distraction. There is nothing I can do about Jacob's surgery. He has to have it. It is going to kill me to hand him over but I will be strong for him. By participating in this heart walk I am also fighting for him. I can't tell you how good it feels when I can help raise awareness and support heart disease. It is my passion and I feel like I am Jacob's voice. It gives me an opportunity to share our story and show why it is so important to raise money to help fund research. So yes I do have a lot on my plate but I chose to do something positive instead of dwelling on the my fear.

The walk is not until September. I am praying we are home by then but if for some reason we are not then it would be great to have people there supporting team Jacob. I at least want to be able to raise money for a great cause. If we are home and Jacob's doctors give us the ok I would love to decorate his stroller and walk him in the walk. I want Jacob to be proud of who he is and I am very excited to show my support for him and all of the other amazing kids who are fighting this battle.

I NEED YOUR HELP

To join my team, click on the link below and you will be taken to my web page. On my web page, click My Team Page and Join our Team to register online! You can use the online fund-raising tool to email your friends, family and colleagues to ask them to support our team and our cause! The more people we have working to defeat heart disease and stroke-the better, so please join team Jacob!

If you are interested in the walk and want more details feel free to email me at thebakertrio@gmail.com or Follow This Link to join Team Jacob.

Extra incentive
I will be designing t-shirts for everyone on my team who will be walking on September 18th. You know you want to sport one!

DONATIONS
If you don't want to join the team but would like to make a donation in Jacob's name you may do so by clicking on the banner at the top of this blog.

Thank you everyone for all of the support. Jacob has already made such a difference and with your help we can do even more!

Thursday, July 15, 2010

Excited for CHD Awareness!

BOSTON MED

So first I would like to remind everyone to tune into Boston Med tonight on ABC at 10PM.

My cousin's daughter Sara will be featured on tonight's episode. She had hypertrophic Cardiomyopothy and had a heart transplant on March 21, 2009. Sara's brother Ian has the same condition and may also have to have a heart transplant. Please keep them in your prayers.

They thought that the CHD came from their dad's side since he had the same condition however now that Jake has a CHD I wonder if it is on our side as well. My cousin on my mother's side also has 2 children with CHDs. So including Jacob that is 5 kids all Jake's generation who have a CHD on our side. I never knew that much about CHDs or that I was at risk to have a child with one. Can't be a coincidence. Either way we are blessed to have each and every one of these precious children.

Please watch Sara's episode. I am so excited that Boston Med has had 2 out of their 8 episodes dedicated to Congeital Heart Defects. How great for awareness!

Sara's Story on Good Morning America

Article Sara wrote about her experience:

Sara's Episode Highlights

Great Job Sara!

American Heart Association

I had the pleasure today of telling Jacob's story to the board members of the American Heart Association. I was honored that they let me show them our experience and why it is so important to continue to raise funds for these children. I tried to give them a window into our world so they could see how many people are affected and how important this is. 1 in 100 babies have a congenital heart defect. It is the number one birth defect and number 1 cause of death due to a birth defect. Twice as many babies die from CHDs than ALL of the pediatric cancers combined yet pediatric cancer gets 5 times the funding. So many babies don't even live to see their first birthday. This has to change. 30 years ago Jacob's condition was 100% fatal, now they have a 93% survival rate. That is huge. Who knows what they could do in another 20 years. I am so excited to be able to be a voice for these amazing kiddo's.

I also showed them the picture of Kenny. He is a 21 year old HLHS survivor. He came to meet Jake while we were in Philadelphia. He has been such an inspiration for our family. Kenny is doing great. He had a pacemaker put in 5 years ago, other than that he has lived a great life so far and I pray will continue to for many many years to come. Kenny is proof that there is HOPE.

My hope is that I can help educate people so that they can learn about our kids and be able to better educate patients. I never want another mother to feel the devestation that I felt. We were not given much hope and if I had not done my own research I shudder to think of what could have happened. Jacob is a blessing and I thank God everyday for guiding me to make the choices I did. I can't imagine never knowing his smile.

Start! Heart Walk.

I am trying to put a team together to participate in the American Heart Association Start! Heart Walk. The walk will take place in Charleston, WV on Saturday September 18th beginning at 8am. Now this is all dependent on how Jake does with his Glenn. His surgery is on August 4th. If he recovers well and the doctor's give us the ok then I would love to push him in his stroller for the walk. I still want to take precautions so Jake won't be able to be held by anyone or have anyone come to close but it would be great if he could represent CHD kids.

I need 15 people to be able to register our team. You basically would try to get sponsors to donate and you would agree to walk on that day. I at least want to try to get sponsors and raise money for this cause. I hope to walk but again it depends on how soon we can come home and also on the weather and Jake's doctors approval.

If you are interested in Joining Team Jacob please email me at thebakertrio@gmail.com. If I can get 15 people I will contact the coordinator and set it up. I can email the details to you when I get them so make sure I have a way to contact you.

Oh and one more thing.... You have to be willing to wear a Team Jacob t-shirt lol.

Prayer Requests:

• Jake's heart buddie Jack is going for his Glenn tomorrow morning.
Please pray everything goes well and please pray for calm and strength for his parents.

• Please continue to pray for Ruthie as her body adjusts to her new heart.

• Pray for Reece who continues to recover from his Norwood.

• Pray for Bodie who may get to go home soon but has to wait a little longer for his Glenn.

• Pray for baby Emma who is still waiting on her new heart and is back on life support.

• Please pray for Jacob as we will be leaving in a week and a half for his second
open heart surgery. Pray for his doctors and his strength to fight this next step
in his Journey.


Thank you so much for the constant support and prayers for our family and all of the other families who are fighting this battle.

Wednesday, July 14, 2010

Don't Wait For Tomorrow

I found out tonight that my neighbor Lora Silvey passed away last week. I feel sick inside right now. Lora was an amazing woman. She was such a strong woman and such a free spirit. Lora had cancer but she refused to let it win. She fought for years and did it with a smile. She loved riding motorcycles with her husband and I would always smile when I heard them ride off on beautiful day. I admired her for her strength and her will to live.

Despite her own battle Lora was always there for us. She was great to talk to and she understood what it was like to battle an illness. When I had Jake she followed this blog and would send me letters of encouragement. She donated to us to help while we were out of town even though they had their own medical bills to deal with.

I came home 2 months ago. Every day I would look over at her house and pray she was doing well. I wanted to go over and check on her but I was afraid that she was home alone and it would be to hard for her to come to the door. I talked to my mom daily about wondering if I should go over or wait until I saw her outside. I did not want to disturb her but I wanted to tell her I was here if she needed me. I always talked about it but always decided that there was always tomorrow.

Before I left she told me the doctors gave her 5 months. It had been almost that when I came back. I am so angry with myself that I did not go over. Just yesterday I told my mom I was concerned because I had seen a few cars stop there. I thought maybe she had taken a turn for the worst. My husband had seen her right before I came home and said she looked good. I took for granted that I would have time. I just kept waiting to see her outside. I knew in my heart I needed to go over, why did I not listen?

Seems like I am always being taught lessons in life lately. I more than anyone knows how fragile life is and I am angry with myself that I did not go over despite my concerns. I was afraid of this yet I still just kept telling myself that I would go over tomorrow but tomorrow never came. If anyone from her family is reading this I am sorry. I am sorry I did not stop by and Lora will always hold a place in my heart.

I pray for peace for Lora's family. She is no longer in pain. Her body is free from cancer. I picture her riding her motorcycle with a smile on her face. God Bless you Lora. Thank you for being such a great neighbor and friend. May your spirit fly high with the angels and be at peace. I will miss you.

Sunday, July 11, 2010

My Birthday Wish


Here Is To Getting Older!

I turn 29 tomorrow. Lately I have learned so much about life and what is truly important. Some people dread getting older, they want to stay young forever. I have never felt that way. I have always felt that life just gets better the older we get. So I am not sad at all that this will be my final year in my 20's. I welcome age, I look forward to getting older. For me life has only gotten better with age. I know some of you must think I am crazy. Better? With everything that has gone on in the last year. YES! BETTER! I love my life. I have the most beautiful family and I have been lucky enough to learn true happiness. It is loving life and enjoying every second. It is seeing my children smile and light up when they learn something new. It is feeling blessed and overcoming lifes obstacles and growing stronger because of them. Life is good.

I would not change my life. I hate that Jake has to fight to live but if someone told me I could go back in time and not get pregnant, not go through any of this.... I would tell them NO. I do not regret a single decision I have made. I love Jacob with all of my heart. His heart may be broken but he is perfect. My biggest wish for Jacob is for him to be happy. I have already gotten this wish 10 fold. Jacob smiles all of the time. He grins every time I come into view. He laughs at his brother and smiles at his father. He is a happy child. What more can I ask for. Jacob was sent to me for a reason. We take life for granted. We worry about trivial things and base our lives on material possessions. Jacob has shown me that those things don't matter. Why go through life living for tomorrow when you could live for today. Breath in life and cherish every moment. Because of the lessens Jacob has taught me I feel like I am the luckiest parent int he world.

These are the best years of my life and I look forward to getting older!

Aidan and Jacob playing. Jake was the giant baby taking over the town.
They both had so much fun. Jacob had huge smiles!


MY BIRTHDAY WISH

As you all know I have become very passionate about Congenital heart defect awareness. My birthday wish is for everyone to share one fact about CHD to someone they know. Share Jake's story or even something as simple as letting someone know that 1 in 100 babies has a CHD. We need to be the voice for these children.
  • Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
  • Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
  • This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
  • Though research is ongoing, at least 35 defects have now been identified.
  • 4-8% born with CHD have Hypoplastic Left Heart Syndrome
  • 4-10% born with CHD have Atrioventricular Septal Defects
  • 8-11% born with CHD have Coarctation of the Aorta
  • 9-14% born with CHD have Tetralogy of Fallot
  • 10-11% born with CHD have Transposition of the Great Arteries
  • 14-16% born with CHD have Ventricular Septal Defects
  • Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
  • It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes

BUILDING A DREAM


Our local hospital is trying to raise funds to build a children's hospital. The closest one to our area is 3 hours away. They are half way there. If able please support this amazing cause and donate today. This could save lives. Having a sick child is difficult, but it is even more scary knowing that your child could not get immediate care if they needed it. Please help us help our children...


PRAYER REQUESTS:


• Another sweet child lost his battle with HLHS today. Joshua Hall was 2 months old. Please pray for peace for his family.

Baby Emma is still waiting for her heart and the doctors want to attempt to extubate her tomorrow. Pray it works and please pray Emma gets her heart soon.

Baby Ruthie got her heart! Please pray she continues to recover and please pray that her body does not reject the heart and she lives a long healthy life!

Baby Bodie may be having his Glenn this week. He has had a very rough road and has spent most of his life in the hospital. Please pray for him and for the doctors. Please pray that he does well and can finally go home with his family.

Baby Jack will also be having his Glenn this week. Pray he continues to be a super star and sails through this one as he did the first.

Baby Reece will be having his Norwood surgery tomorrow morning. Please pray for calmness for his parents as they wait while their baby boy has his first surgery. Please pray that Reece does well and is home with his family very soon.

As always please continue to keep Jacob in your prayers. We have 2 more weeks before we make our way back to Philadelphia for his Glenn.

1. Pray that the pulmonary consult goes well and pray his lungs will get better without intervention.
2. Pray his lungs are strong enough to handle bypass
3. Pray that Jake does well in surgery and has a fast recovery
4. Please pray for strength for our family as we hand over our baby for this next surgery






Friday, July 9, 2010

Fear, Faith and Progress!


Jacob's cardiologist came back this week. Jacob weighed a whopping 12 pounds! His shunt sounded wide open which is great. He said Jacob looked really good and if it were not for his lung issues and the feeding issues he would have sailed through all of this. Everyone always says they can't believe how big Jacob is and how good he looks even though he has such a severe cardiac defect. The nurse at the cardiologist office has a grandson who is 3 days older than Jake. He has no health problems and Jake weighs more than him! This is highly unusual for heart babies. They are usually very small. I am so proud of my little peanut.

We only have one more cardiology appointment before we go back to Philly for surgery #2. His cardiologist is glad we are getting a pulmonary consult while there as Jacob's breathing is highly unusual for a hypoplast. We have been told how "unique" he is since day one. We know there is lung damage but we hope to find more answers as to what exactly that is.

FEAR

Panic has started to set in the last few days. It is hitting me that I am weeks away from having to hand my sweet baby over to the surgeons again. The first time Jacob had his surgery he was so sick. He was going to die if he did not get into surgery. It is going to be so much harder now that we have been home. We just got home 2 months ago. Since then we have adjusted to our new normal. There are days where I forget he is so sick. He looks like a normal happy baby. Other's notice he is sick because of his rapid, loud breathing. I have grown used to those sounds. Feeding time to others may seem difficult or strange. To me I am just feeding my baby boy. Bottle or tube I still interact with him as if anyone would when feeding their child. The meds also have become routine. I love my life, I love my baby.

Most of all we have bonded so much since being home. Jake has done so well and thrived. He has overcome so much. He has become very attached to his mama. He instantly calms when I hold him. His eyes stare at me, filled with trust and love. How do I hand him over knowing he will be in pain. How do I look into those eyes walk away as they bring him through those doors. How do I sit and wait while he is being cut open and his heart is being worked on.

I fear that his lungs won't be able to handle bypass. I fear the unknown. I fear losing my sweet baby who I love with my whole being. I fear Aidan losing the baby brother he has grown to love. I fear so many things...

Faith

I know that without this surgery Jacob can not live. I know that this is what he needs. I know that it is not in my power. I know that faith can help me get through. I know that when my baby needs me I will be there. I know that Jacob has proven over and over that he is strong, he is a warrior. I know that he won't remember this. I know that this is what we have to do to keep him with us. I know that this will make us stronger and I know that I have done everything I can to give him the best chance at life and that I have to leave the rest to God.

Progress

Milestones


Jacob continues to hit his milestones. He has sucked on his fingers for a while now but now he studies his hands with such wonder. I love watching him stare at them and move them around. It is amazing to watch his eyes and wonder what he is thinking. He is talking more and more everyday and that smile can light up a room. He smiles so big I expect him to burst out laughing.

Brothers


Jacob and Aidan continue to bond with eachother. Aidan loves talking to his baby brother and loves to make him smile. He sings to him and tells me he loves him all of the time. I always hoped he would love being a big brother but I never imagined he would love it as much as he does. I am so proud of him. He is such an amazing little boy. He is also so smart. Yesterday he was playing with my mom's ipod and he spelled his name on it. He has been so interested in learning how to spell. We have pre-school time everyday since he can't be in daycare due to Jacob's health. He never tires of learning. I try to find ways to learn througout the day. We are working on writing letters right now. I am very blessed to have such great children.

Feeding

Jacob is growing up so fast and changing day by day. As I mentioned before he is gaining weight really well. This is amazing because he still is not even up to the calories he should be getting. He has always had issues with volume so we are going slow with him. He is getting about 20ml's less than he should be getting but still gaining what he should be. So everyone agree's we should not push him to much since he has surgery coming up. Plus if he gains too fast it could affect his breathing.

I have been raising his overnight feeds by a total of 10ml's each week. He has tolerated this very well. During the day Jacob has been getting hungry about an hour before he was due to eat. I had been giving him binki dips in formula to hold him over. After talking to his cardiologist we decided to raise his day feeds to 70ml each time. So far it has worked wonderfully. Jake has had no problems tolerating the food and is satisfied between feeds. It was just what he needed. It is so hard with him because I can not just give him a bottle and he drink what he wants. Instead I am putting it through his tube so the only way to know if it is to much is if he starts crying in pain and discomfort. Plus he has been gaining normally. It is all trial and error.

Birth to three

We had our big meeting with all of Jacob's birth to three representatives. He does qualify to continue the program. He will have a speech therapist, a physical therapist and a nutritionist. The main focus will be getting him to eat more by bottle. Jacob also still arches when mad and he favors his left side. We also think that he may have some sensory issues from being in the hospital. He does not like to be in the carseat, take baths, change positions, basically does not like to be messed with. I think he favors the left because that was the side I always sat on when he was in the CICU. I plan to sit on his right side a lot after this next surgery. Maybe it will help. Until then I use a rattle to get him to turn that way.

They have already helped so much. Jake was crying during feeds but now we are pushing it in much slower and feeding him on the boppy or in the bouncer but no longer in the swing. This way his body is more elongated and he is more comfortable. He has not cried during feeds for weeks which is amazing. He does still cry after he eats at times but he calms as soon as I lay him on my legs on his belly. They said that may mean he is still having reflux even with the nissen and prevacid. We are going to leave his food volume as is for now so we don't put to much on him before surgery. After surgery the nutritionist will work closely with us to make sure he is getting the right amount of food.

Spreading Awareness

Next Thursday I will be attending the American Heart Association's board meeting. I am excited to be able to share Jacob's story and reinforce why it is so important to raise funding for CHD research. I pray Jacob's story will open their eyes to what so many of our families go through on a daily basis. I will also be helping them with events such as the Heart walk, and the 2011 heart ball. I am very excited to be able to help raise awareness and support this great cause.

Making a Difference


Our local hospital is trying to raise funds to build a Children's Hospital. The closest children's hospital is 3 hours away. Our area really needs this. If something serious happens to our children they would have to be life flighted to Cincinnati OH, Pittsburg PA or Morgantown WV. That time could mean the difference between a child living or dying. I am really passionate about helping make this dream happen. I don't have to funds to contribute monetary donations but I hope to contact someone at the hospital and offer to share our story. I hope to help raise funds for them through this blog and my facebook page. I am also going to offer to write letters or speak to donors if they need me to. I just need to find out who I need to contact in order to do this. If anyone reading this knows how please leave me a comment.

Please consider making a donation by clicking the link below.

MAKE A DONATION

If you have a blog or a facebook page I ask that you also share this link and help support this cause. Thank you.

Well it is time I go to sleep. The kids will have me up in a few hours.

Please continue to pray for Jacob in the coming weeks. Pray his lungs will heal. Pray he will do well in surgery. Pray for his doctors. As always please pray for all of these precious heart warriors who continue to amaze and inspire us daily.

Love,
The Bakers

Tuesday, July 6, 2010

Ruthie Got Her Heart!

Some of you may have seen me put prayer requests on here for baby Ruthie. She has HLHS like Jacob and was not a candidate for the "Glenn" surgery because of the pressures in her heart. She has been waiting for a heart for 5 months now. I am so pleased to say SHE GOT HER HEART. Yesterday she was given her new chance at life. Her mother last updated that she was pink now!

Our babies are always dusky in color so I can't imagine her feeling to see her sweet baby pink after such a hard journey.

Please continue to keep Ruthie in your prayers as she still has a journey ahead of her. Also please pray for the donor family who lost their child but still gave the gift of life to another.

You can follow Ruthie's Journey here:
http://heartmomma.blogspot.com/

God Bless!

Sunday, July 4, 2010

New Look

Yes you are on the right blog!

I thought it was time for a new look. I wanted something that was more fun and upbeat. I also needed to change it because the brown background would not show up on ipods or iphones so our blog was not able to be viewed.

I really want to design a blog from scratch but that will have to wait until I have a little more time on my hands. For now I just customized a template from cutest blog on the block. Great site by the way if you have been thinking of designing a blog of your own.

Happy 4th of July to everyone.

Our holiday weekend has been great so far. Last night we did fireworks at the hosue. Aidan liked the fireworks much better this year although he watched the "Loud" ones through the window because he did not like the noise. Jacob slept through all of the festivities. I stayed in the house with Jake and got some work done, while taking a moment here and there to join in on the fireworks. It was very low key this year which was very nice. Andy had a great time with Aidan. Fun was had by all!

Tomorrow we are going to my parents to have a cook-out. I can't tell you how nice it has been just hanging out around the house with my boys (Andy included).

Jacob went to the pediatrician to be weighed on Friday and he was just shy of 12 pounds! He is not getting the calories that a normal baby would be and we are going to work on that but the good news is he is still gaining what a normal baby would. We don't want to push him so we have to take it slow. He is still gaining a half a pound a week. Can't imagine how big he will be when we get him up to the right calorie amount.

I am anxious to talk to the cardiologist and get another echo to make sure his heart function has not decreased at all. His heart rate has been lower at night. I think it is because he is older but still any change makes you nervous with these kiddos.

I have some prayer requests for a few of my dear friends that we have met through our Journey.

Emma has lived at chop all but a few weeks of her life. She will be a year old next month. She has hypoplastic left heart syndrome like Jake and is currently awaiting a heart transplant. The last few days her body has taken a turn for the worst. They are having to keep her sedated and intubated in hopes that it will help her body rest and she will start feeling better. Please pray for Emma and pray for the family who will have to lose their child in order for Emma to get her new heart. Also pray for Emma's mother Christina. She has two other children at home and is constantly going back and forth between them. Pray for her strength to get through this new hurdle.
Baby Emma

Please also pray for my friend Stacey. Her family is going through a lot right now. Baby Zoe was born at CHOP a week before we left. I met Stacey on facebook before we met in person at CHOP. Zoe's latest echo showed mild decreased function in her heart. Pray that her heart stays strong and does not decrease in its function anymore. Jake's heart did the same thing around the same time. His heart squeeze is on the lower side of normal so they have him on captopril to help. They are trying Digoxin on Zoe first (Jake was on this at one point also). If that doesn't improve the function then they will do Captopril with Zoe however she will have to go to the hospital when they start it so they can monitor her blood pressure. We are praying she won't have to go to the hospital so pray the Digoxin works. Also please pray for Strength for her husband Caleb. His mother is ill and he is dealing with a lot of stress right now.

And please keep my sweet Jacob in your prayers. In a few weeks we will be headed back to Philadelphia and I will have to hand him over to have yet another operation on his heart. It will be so much harder this time since I am with him 24 hours a day. It will be very hard watching him go through this again but I also know that he will get stronger with each surgery. I worry about strokes, bypass, getting of the vent... the list goes on.

I also scheduled a visit with a pulmentologist while we are there to check his lungs and see what is going on. I worry so much about the lungs. It will be good to have a diagnosis but I am also scared of what they will find. I pray the cardiologists are right and that it will get better with age.

As always I pray for all of the precious babies who have lost their battle with CHDs and who are still fighting daily. You inspire us all to be better people.

Love,
The Bakers

Thursday, July 1, 2010

The Bond of Brothers



A few days ago Aidan told me that he wanted to keep baby Jacob forever. I smiled and told him that was why the doctors were fixing his heart, so we could keep him forever. Aidan said "No mommy I don't want them to fix his heart I just want to keep him forever". I asked him why he did not want the doctors to fix his brother's heart and he said "because I don't want him to go to the hospital, I want him to stay here with us".

I am blessed with the sweetest boy ever. Aidan loves his brother so much already, it makes my heart melt.

I love you Aidan and Jacob. I am here for you always and forever.

Love, Mommy

Boston Med

Tonight's episode of Boston Med is about a couple who had a baby born with HLHS. It will help give some insight into what families like ours go through. A time that should be full of joy turns into a time of fear and anxiety but also one of hope and inspiration.

Jake's Journey was even more risky and he was much sicker than most babies with HLHS because of his restricted septum and lung disease. Please watch tonight's episode so you can see a little bit of what families like ours go through.

Here is the synopsis:

Renee Peerless has spent nearly nine months of her pregnancy alone while her husband serves with the military in Iraq. His absence is made more difficult by the knowledge that their baby in utero has a serious heart defect and will need surgery within days of being born. A story of courage and hope, viewers will recognize the universal themes of motherhood, duty and determination that summon the best from us in difficult situations.

It airs tonight at 10pm on ABC. Set your DVRs

Love,
The Bakers