My Little Big Boy

Sorry I didn't get this post up on Friday. We had company at our house so I didn't get a chance to get on here much. Like I have always said please never worry if I am late getting a post up. No news is GOOD news.

I thought this week I would write a little bit about the boy Jake is becoming. Jake is so much like his older brother. I have been noticing him doing little things that Aidan used to do. He hooks his feet together when laying down or sitting. He lays down when playing with cars or anything with wheels so he can watch them roll. He LOVES to watch Jungle Junction and Mickey Mouse. He will be watching it and just start laughing at the TV.


He LOVES trucks and trains just like his big brother. He also has quite a strong personality, just like his older brother. He lets you know what he wants when he wants it. If you are feeding him and he doesn't want a bite he will shake his head no until you give up and wait for him to open his mouth again. If he is mad, you know it lol. As soon as you tell him no he starts screaming and throwing a temper tantrum. Another thing he gets from his brother hehe. He is also super sweet just like Aidan. When he is sleepy he lays his head down on my lap but he fights the sleep as long as he can. Bath time is his favorite time of the day, as soon as I start the water he is right there squealing with excitement. It is adorable.

He is growing up so fast. I recently decided it was time to see if he would chew his baby aspirin. He gets 1/2 a baby aspirin a day. Many heart moms have started earlier than this but I worry about his vocal cords and tend to hold back a little longer. Turns out I didn't have to. Jake took it right out of my hands and chewed it up like it was candy. He looked at me like "Why haven't you always fed it to me this way". I was thinking the same thing since I have had to crush it up and mix it with water, this was MUCH easier.

Jake is walking SO much now. He still prefers to hold onto walls and furniture but if he is holding his binki he forgets about his fear of not holding on and he will walk the length of the hallway and living room without falling. He is so cute with his little waddle. He gets so excited when he reaches me at the other side of the room, he flashes me a big old smile and of course I cheer him on the whole way.


Both of my boys are growing up. I am so proud of them both and couldn't ask for better kids. Aidan is so good with his little brother. Sure he has to "Test" out all of Jake's toys and he is still working on the whole sharing concept but he also is always sneaking hugs and telling Jake he loves him. The love he has for his brother is obvious to anyone that sees them together. I know he will always be there to protect his little brother. I love watching the boys play. During the most scary times of my pregnancy when fear took over, I held onto the dream of my boys playing together and laughing.

That dream has come true. I am truly blessed.

I may not get another update in this week. Friday we head to Missouri for Pappy's 60th birthday party! This will be an adventure since we will be driving 12 hours. Unlike his brother Jake HATES the car. Can't blame the kid since every time we go on a long car trip he has surgery or tests done. Pappy actually turned 60 last year but we were in the midst of open heart surgeries so we could not visit. He was so great and decided to post pone his celebration to this year so we could attend. He can't wait to show off Jake and Aidan to all of his friends. I am sure I will be armed with hand sanitizer but it will be great to show off my boys!

2 weeks after this trip we will be headed to Philly on July 27th for Jacob's scopes and to discuss surgery. Please continue to keep Jacob in your prayers.

Ms. Zoe Lihn

Please also keep this little beauty in your prayers. Zoe Madison Lihn is Jake's HLHS buddy from CHOP and his future wife (arranged marriages are still around, right? lol just kidding). Zoe's family is from Arizona and flew to CHOP to give Zoe the best chance possible. There were 4 of us who met on facebook prior to the delivery of our heart babies. Stacey was one of the other 3 women. We were all due around the same time and helped each other during the difficult times. I was blessed to meet each of them and their sweet babies. Sadly baby Mia and baby Gweneth passed away a few months after they were born. Despite the different paths our lives have taken us on we have all remained close. They each own a special piece of my heart.

Stacey has been such an amazing support system for me and I can't imagine going through this journey without her. Recently, Zoe's heart function has decreased a bit and they are concerned her pulmonary artery may be narrowed. She will go to CHOP for an MRI and a possible heart cath on July 7th. Please keep her in your prayers and send possitive energy her way. Stacey Jake and I send our love and will pray non-stop that Ms. Zoe gets nothing but good news.

To follow Zoe's journey with HLHS visit: thelihns.blogspot.com

Pulse Ox Update:
I mentioned in a previous post that we were working on getting a bill introduced which would mandate that all hospitals in WV screen infants for CHDs using a pulse oximetry test. This inexpensive, non-invasive test could literally save lives.

Working on the pulse ox packets to mail out to WV Senators and Delegates

I am so excited to announce that Delegate Patrick Lane has offered to write this bill and introduce it to the Legislature. How exciting! I can't describe how grateful I am to Delegate Lane for helping us turn this dream into a reality. I will be meeting with him in a few weeks to get started on drafting this bill. Michelle, Ruth and I will also be meeting with the American Heart Association to come up with the protocols and work on the language for the bill. This means so much for our State and our children.

The nearest Children's Hospital is at least 3 hours away for many of us. Time is so precious with our babies so every second counts. Children should not be sent home undiagnosed and this bill would help prevent that from happening. It won't catch all CHDs but it will catch many of the severe defects where time is of the essence. I will keep you updated as we learn more. You can also show your support for the bill by joining our facebook page Pulse Ox West Virginia. Thank you as always for all of the support not only for Jake but for all of the amazing heart warriors out there.

Heart Hugs,
The Bakers