Thursday, May 26, 2011

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.


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.
• 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!)

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.


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.

The Baker Family

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