Baby Steps

I know I have been slacking on blogging. I have started doing the Sisters by Heart blog every Sunday and having it on the schedule has helped me tremendously. I thought I should do the same system for Jake's fans! I will start posting a blog every Friday night. If things are hectic I will try to at least give you a quick... "Things are great" and a few cute pictures to look at. Again, I will TRY to do this. Please do not panic if you don't see a post one week. I promise, no news is ALWAYS good news around here.

Jacob Update...

He is starting to walk! Jake has been pulling up for a while now and walking along furniture. The other day he took 2 or three steps without holding on. He did it again today. He is up more than he is crawling now. He will hold onto anything he can find. Jake's physical therapist commented the other day on how good his depth perception is. If he thinks that it is to far even by an inch he will drop down, crawl then stand back up and start walking along the furniture again. He has all of the necessary skills, he just needs the confidence. Each day I see him get more and more daring. Today he trying to stand up without pulling up on something. It ended up being a funny looking downward dog yoga position and then he would fall over. It was really cute.

Like always the boys are keeping things busy around the Baker household. I have realized lately how hard it is only having one car for the family. Andy has to take it to work so we are stuck in the house. Wouldn't be a big issue except it has rained for almost 2 months straight (feels like that anyway). Andy is off for the next 3 days and it is supposed to be sunny everyday so watch out world the Baker's are breaking out lol. Can't wait to get some sun. We are thinking about going to the wave pool with the boys on Monday. It would be fun to see Jake swim for the first time. He LOVES bath time so I am sure he will enjoy it. It is supposed to be really hot though so we are still not sure. If we go we are going to go first thing so we can get a spot under a tree or something. Then I will most likely cover Jacob with sunscreen an inch thick lol. Honestly it doesn't matter what we do. I am just looking forward to spending time as a family... OUT OF THIS HOUSE!

How we have entertained ourselves on rainy days.

Face Painting- Don't we looks adorable!

Good ole' Fashion Fun. Built a tent under the kitchen table

Baker Friday Night Movie Camp Out!

Jake is growing up so fast. Language wise he is still just saying Ma-ma, Da-da and Na-na (for no). He has started shaking his head no as well... mainly at bed time lol. He FINALLY started waving. It's so cute, he waves to himself with both hands. He has also learned how to give high fives. He thinks that is the best thing in the world. The smile is so contagious. He has been letting go of furniture and standing upright without holding on for quite a while.. like I said, the skills are there he just needs to go for it!

Aidan has been so good with him. Every morning he says "Lets go get Jacob". He already looks out for his little brother. Of course he also likes to take his brother's toys. What kind of big brother would he be if he didn't test them out and make sure they were safe right lol.


I have to brag on Aidan as well. He is not able to go to pre-school/daycare right now because we can't risk the germs. I know we can't keep Jake in a bubble but when Aidan was in school he was sick every other day. With Jacob's tiny airway we can't risk that. It could kill him. That being said, we don't want Aidan to fall behind because he WILL start kindergarten on time. Therefore, we have school time at home. We work on letters, writing, math. I have purchased different pre-school workbooks that we work from. He is so smart. I sat him down the other day with a brand new writing workbook. It works on skills kids need before they can write. Mind you he has been practicing letters for a long time, I just wanted to get him more practice. He zipped through that thing in about 10 minutes. He did everything he was supposed to and did a great job. I am so proud of him and know that he will do great come kindergarten.

Health...

Jake's cardiology appointment a few weeks ago went well. No news is good news. His chest xray looked good and he sounded great. He got an A+ from Dr. Heydarian. We don't have to go back until after his scopes in Philly. Oh how the thought of that makes my stomach churn. I thought it would get easier but I was kidding myself. I cried like a baby the last time I handed him over for scopes. My child has been through 2 open heart surgeries and I was crying over a little scope. It just gets harder. I am not worried about the scopes in Philly. I mean don't get me wrong any time he has to go under cardiac anesthesia it is not good but I know he will be ok. Its what happens next. Surgery. I wish to God I could run away with Jake and hide him from all of this but I know there is no escaping his issues. Everyone tells me how strong he is and how this is nothing compared to what he has been through. I know how strong he is, I just wish he didn't have to be. I want to be strong for him. I HATE this. I can't fix it, I can't protect him. As a mother I am supposed to protect my baby from pain and danger. Instead I have to hand him over for another major surgery which could take him from me. How can I do that?

I have to be strong. For Jake. I will hand him over because I have to put my faith in his doctors and in God. Jake is struggling to breathe. I don't want him to struggle and I don't want his breathing to weaken his already weak heart. I will hand him over because I know that this is the best thing for him. I will be strong because being strong is my ONLY option. If Jake can fight like he has then I can fight to.

I love you baby boy. Mommy will ALWAYS be here fighting alongside of you, holding your hand. ALWAYS!

Spreading Hope... How can you help?

I was talking to a mom today and it brought me back to when I was preparing to have Jake. It seems like so long ago but at the same time like it was just yesterday. We met through Sisters by Heart. She received one of our care packages. She was talking about how she was afraid to jinx things and buy anything for her baby. Her baby is due in July with HLHS. It brought me back to when I was pregnant with Jake and how I had those same fears. I wouldn't let anyone buy any baby gifts because I didn't want to have to come home to them if he didn't make it. It made me realize how sad it is. As an expectant mother you should be excited and preparing for your baby. Not fearing if you buy a onesie or paint a room that you will jinx everything. It just makes me realize how important the work is that we are doing with Sisters by Heart.

To be able to give these moms the items they need that will be useful to them and even more so to give them some HOPE. I am so proud to be a part of such an amazing group of women. Most of all I am proud that through Jake I am able to help others who are just beginning this journey. I feel 100% that this is my purpose on this earth. I am sad Jake has to go through so much and I would take it away in a second if I could. In my heart I know he was given to me for a reason. I just feel it. Together we can help create HOPE and help spread awareness. Together we can make a difference!

Despite all of the HOPE and success stories far to many children are still fighting this battle and sadly so many don't make it. 4000 babies this year will not live to see their first birthday.

This week a beautiful little girl named Vivian passed away. It came as a shock and I was heart broken to learn of her passing. Vivian was having complications post-Glenn (second surgery for HLHS). She went in for an MRI to see what was going on and sadly never recovered from anesthesia. Please keep her family in your prayers as they feel a pain NO parent should ever feel.

Vivian Gorgone- Gone from this earth... forever in our hearts!

It is because of Vivian that I fight for awareness, because of all of the babies who have lost their lives and for those who continue to fight every day for what most of us take for granted... a chance at life. This HAS to change. We HAVE to change it.

Our children look healthy while their anatomy speaks a different story. People don't know about Congenital Heart Defects so they don't know to donate to promote funding. Please continue to help us fight this disease. Continue to spread Jake's story and spread awareness for Congenital Heart Defects. Our children need us to be their voice. We need to fight for their future.

Will you join me? Here are ways that you can help...

1. Tell someone about Congenital Heart Defects

Tell Jake's story or another story of a child with a heart defect. Simply tell someone a CHD fact or that they exist! You would be surprised at how many people don't know they even exist. I was one of those people.

Facts:
• CHDs are the #1 birth defect and #1 cause of death by birth defect
• 1 in 100 babies are born with a CHD
• 4000 babies born with a CHD won't make it to their first birthday
• Twice as many babies die from CHDs than all pediatric cancers combined yet pediatric cancer gets 5 times the funding.

2. Donate blood.

Children being treated for cancer, premature infants and children having heart surgery need blood and platelets from donors of all types, especially type O.

3. Donate to help fund CHD research:

American Heart Association
Children's Heart Fondation
Congenital Heart Information Network
It's My Heart
Little Hearts
Mended Little Hearts

3. Donate to a group who offers support to families dealing with Congenital Heart Defects:

Sisters by Heart
Wyatt's Warmth from the Heart
Mia Marrone Heart Fondation

3. Join or donate to a heart walk or start one of your own!

Join Team Jacob: If you are local and you would like to walk with team Jacob you can do so by clicking here. When asked, select that you want to join a team and type in Team Jacob.

Event Info:
Where: WV State Capitol Grounds, Charleston
When: September (actual date coming soon!)

DONATE
Our Goal this year is to raise $3000. Last year we raised $2,000 and we are starting much earlier this year. Please help us reach that goal.

CLICK HERE TO DONATE


Thank you so much for supporting Jake and all of the special heart babies out there. Your support and love means so much to all of us.

Love,
The Baker Family

The Greatest Gift!

I had such a great Mother's Day. Last year I was in Philadelphia with Jacob as he recovered from open heart surgery. My husband and Aidan were back in West Virginia. It was heart breaking to not be with both of my boys on Mother's Day. I can't tell you how blessed I felt to have our whole family together this year. It was the greatest gift I could as for.

The boys bought me pink roses (My favorite!) and a sweet card. They also brought me breakfast in bed and my husband cleaned the house! Seriously, I could get used to that. We spent the day at my sister's house with my parents. Aidan had a blast playing with his cousins and enjoying the beautiful weather. My sister has a small bridge that goes to a fish pond. The bridge was missing a few planks so Aidan said he had to make it safe and spent hours bringing old bricks over and "Fixing" the bridge. He had SO much fun. Thank you again to my amazing family for a great day!

I was also excited to find out today that Sisters by Heart is officially a nonprofit corporation! Our next step is to obtain our 501(c)(3) status so that all of your much-appreciated contributions will be tax deductible! I am so honored to be a part of such an amazing group of women. We have sent out over 40 care packages to families of children who are newly diagnosed with HLHS. We appreciate all of the continued love and support! To learn more visit our site at heartsisters.blogspot.com.

I hope each and every mother out there had a beautiful day. A special Happy Mother's Day wish to all of the mothers out there who have had to say good-bye to their precious angels. Know that you and your sweet angels are in our hearts always. I pray you were able to find some peace and comfort today.

As a tribute to all heart moms I am excited to share with you this beautiful poem that I came across. It was written by Stephanie Husted, a mother to a son with HLHS. Stephanie has such an amazing gift and her words touch my heart so deeply. Thank you Stephanie for sharing your poems with all of us. You really do need to write a book!

A Mother's Day Poem

This is for the Mother's...
(Each mother that I've known)
Whose greatest hope was someday,
To have children of her own.

For the ones who proudly rocked their dolls,
And kissed them each goodnight,
This is for the Mother's...
Who were told..."Something's not right".

This is for the mother...
Who when faced with such a trial,
Sits beside her child's bed,
Just praying all the while,

For mom's who learned of patience,
In a way that no one should,
For the mothers who know sometimes,
Life is anything but good.

When dreams of all the "oohs" and "ahhs",
As doting friends arrive,
Become instead...a battle,
To help their child thrive.

This is for the mothers...
Who refuse to face defeat,
Who become their child's advocate,
Who teach their child to eat.

Appointments fill their busy lives,
It's time to go again,
With feeding pumps, and specialists,
A tank of oxygen.

As people stop...to take a look,
Just wondering...what's wrong?
I've seen that look, a hundred times,
"You must be very strong".

The oohs and ahhs...don't matter,
Now life seems much more clear,
I'm lucky I'm his mother,
I'm blessed that he's still here.

This is for the mother....
Whose shaking hands release,
The child that she loves so much,
(And then she prays for peace)

"We will take good care of him"
The nurse says carefully,
This mother's thoughts are simple,
"Lord bring him back to me.

His life no longer in her hands,
She wonders what's in store,
This is for the mothers....
Who has walked this road before.

This is for the mother....
Whose worst fear comes to light,
"Were still not certain what went wrong...."
"We'll watch her through the night."

For mother's who sit powerless,
Praying...please let her survive,
For mother's who must go on somehow,
When their miracle doesn't arrive.

As some wake up on Mothers day...
To kisses, cards and laughs,
Other's have just memories,
and well worn photographs.

This is for the Mother's....
Who knows that it's a treasure,
To have a child...love a child,
Their is no greater pleasure.

For runny eggs and blackened toast,
Arranged upon a tray,
With a bunch of wilted dandelions,
"Mom does it taste okay"?

For every busy restauraunt,
And every crowded mall,
The words...."I love you mama" are...
The greatest gift of all.

~Stephanie Husted
Heart Mom to Braeden

To be a mother...

I once thought that to be a mother meant to keep your children safe, teach them right from wrong, kiss their boo-boos and read them a story before bed each night. Last year I learned that being a mother is so much more. When I had Jacob I not only became a mother (for the second time), I became a a stay at home mom, a nurse, an advocate... most of all I became a heart mom.

I have laid my child in a surgeons arms not once but twice, I have slept upright in a hospital chair, I have listened to the beeping of machines and been thankful, I have smiled through the tears, I have found strength when there wasn't any left. I am a Heart mom and this weekend is Happy Mothers Day! A Mothers love is the fuel that enables a normal human being to do the impossible.

This quote was passed around on facebook tonight and I had to share it because it is a perfect description of what our family and so many more go through. People ask me how I am so strong or how do I stay so positive. The answer is easy, I am a mom. When you have a sick child you go into survival mode. The first night Jacob was out of the hospital I held 8 syringes in my hand and cried thinking "how was I going to do this?". How was I going to keep this fragile baby alive? I was scared and didn't sleep a wink that night because I couldn't stop watching his machine to make sure his heart rate did not drop to low. He couldn't eat by mouth so he was tube fed, I had to monitor him all of the time. I wondered if he was too blue or too puffy. Should I call the doctor or is it just normal baby stuff?

I don't know exactly when it happened but it all became normal to us. Pretty soon I was pushing meds without thinking about it and I could tell you his heart rate just by listening to his breathing. I was a heart mom. I was Jake's mom. After his second surgery he was on oxygen, constantly connected to his pulse ox machine, on even more meds (I believe 8), and still on the feeding pump. Again I worried if I would be able to do it. This time I knew I could. I was no longer afraid because it was our "Normal".

Being a mother is about so much more than bedtime stories. It is about doing WHATEVER it takes to give your children the best possible life. It is about the joy you feel when you hear your child laugh or see them smile. It doesn't matter how many hours of sleep you lose or how hard life gets because that laugh and that smile just makes it all worth it. I asked Aidan what he was getting me for Mother's Day. He looked at me, smiled and said "Love". Absolutely perfect. Seriously I am the luckiest mom on earth.

Happy Mother's Day to all of the mothers out there.
A special Happy Mother's Day to my own mother, who has put her own life on hold so many times to help my family. I love you so much Mom and am so lucky to have you as my mother. Thank you for everything you do!

My Beautiful Mama

Love my boys!

My Heart Hero

I am happy to say there is no real news to report. Jake is amazing as always. Thank GOD the cold never amounted to anything. He had a little cough for a week or so and that was it. He never had any other symptoms and his oxygen levels stayed in the 80s which is where they are supposed to be. The last time I checked him he was actually registering at 90 which is awesome for him.

Jake has a cardiology appointment on Tuesday with his best buddy Dr. Heydarian. It is just a routine check up so it should be uneventful but I will write a post next week letting everyone know how it went.

Until then here is a quick run down of what we have been up to.

EASTER

The Easter bunny was great to Aidan and Jake this year. They both got big baskets full of goodies. Aidan and Jake both helped make brownies to take over Grandma's and Grandpa's for Easter dinner.


Aidan had so much fun this year doing an Easter hunt with his cousins. A special thanks to my sister for buying all of the goodies for the egg hunt and organizing it. And to my parents for an amazing dinner as always!

MY HEART HERO

On Saturday Jake got a special gift in the mail. A Heart Hero cape! I heard about them on facebook and requested one for him a few months ago.

Heart Heroes was created by 3 moms who have children with congenital heart defects. After seeing their children face the challenges of heart operations and cardiology appointments, the moms of these heart heroes decided to create the opportunity for all children with Congenital Heart Disease (CHD) to have a Heart Hero Cape. Thank you Heart Heroes for Jake's cape. Big brother Aidan also had lots of fun wearing it and pretending to be a super hero.

Click here to learn more about Heart Heros

Click here to Donate a Cape to a child with a CHD

DAY IN THE PARK

It has rained here everyday for as long as I can think back. We were all getting pretty sick of being stuck inside. Luckily we had a break from the rain on Saturday and I was able to take the boys for a playdate at the park! My friend Natalie and her little boy Alex joined us and we had a great time.


It was so nice for Aidan to be able to play with friends. I feel bad that he doesn't get out more often. We had to take him out of daycare when we had Jake because we couldn't risk Jake getting sick. Aidan was sick every week when he was in daycare. Since we took him out he has only had one cold in a year! It has been great for his health but I feel bad that he doesn't get to play with kids his age very often.

It was so fun watching him run around with all of the other kids. He kept talking about all of his friends that came to play with him. I think he thought the park belonged to him because everytime someone left he would say... "You're welcome to come back anytime" lol. Everyone had a blast. I even let Jake out of his germ bubble and let him play with the big kids!

I can't wait until all of this rain subsides so that we can go to the park more often. The boys enjoyed it and so did the Mommies!