Thursday, June 17, 2010

Mr. Adorable

The date has been set. Jacob will have his next open heart surgery on August 4th. We have to be in Philly by the 28th of July for testing. We will most likely drive up on July 26th, spend the night somewhere half way and drive the rest of the way on the 27th. Dr. Spray said that his last cath was so reassuring that he won't need another. If the echo shows the pulmonary vasculature well enough then he won't need an MRI either. If not then he will have the MRI on the 29th. If everything looks well then he will have surgery on the 4th of August.

They usually do this surgery between 4 and 6 months of age. The goal is for them to do it as early as possible because the highest mortality rate is between the first two surgeries, however they want the kids to be 12 or 13 pounds. Jake is already 11 and gaining a half a pound to a pound a week!

Jake's last cardiologist appointment went very well. Jacob is gaining weight and thriving. He is 11 pounds already. Dr. Heydarian said he should do fine with the Glen (Second surgery). He said that is the easiest surgery and its a piece of cake compared to the first one. Lets pray he is right! Both his cardiologist and pediatrician told me they thought his lungs sounded MUCH better. I plan to get aa pulmanary consult while in Philly. Hopefully we can get some answers and a diagnosis for exactly what kind of lung disease he has.

So proud of my little man. The G-tube although uncomfortable for him, has really done wonders with his weight. What I love is that he still wants to use his mouth. A lot of these kids have trouble eating because they never had to eat by mouth. I have always said I wanted Jake to keep that reflex and practice. We do a bottle once a day for about 5 minutes and he LOVES it. During his other feeds I dip his binki in formula and he can't get enough. If you try to feed him without doing that he cries. He loves the taste and want's to eat by mouth. If it were not for his breathing we could do so much more.

I contacted birth to 3 and they have assigned specialists to come and work with Jacob. One is Speech who will work with him on taking more by mouth. He also has a nutritionist, developmental specialist, coordinator and a physical therapist. We really need to install a revolving door in our home lol. Jake has a huge entourage of people for such a little guy. I am so glad we have this team looking out for him. I think it will be great for him developmentally since he is going through so much.

I am anxious to talk to the physical therapist because Jacob has always favored his left side and I am afraid it is causing some problems. Since birth he would move his head so he was laying on his left side. I noticed lately that he still favors that side. I try to switch him up but he always rolls back to that one. Jake has become a huge fan of the rattle lately. We have noticed that if you put it in front of him he looks, if you put it to the left side he will turn and look but if you put it to the right he has a harder time. I want to work with Physical therapy on strengthening that muscle.

Jake has also discovered his hands. He keeps holding his hands together and examining them. He also has become a big fan of sucking his two fingers. This comes in handy when the binki falls out. He is also cooing so much more and smiling all of the time. He is growing up so fast. He has such amazing eye contact and acts like he is taking to you. He is doing so great!

Aidan asked me what Jake was saying the other day and I told him he was doing "Baby talk". Aidan looked at me and said no mommy he speaks spanish lol. Sorry had to share that it was just too sweet. Aidan has been so amazing with his brother. He loves him so much and it just makes my heart melt to see him interact with Jacob.

Best Friends Forever

Too funny not to share lol

Well it has been a busy week here like always but we are loving every moment. Please continue to pray for our sweet boy as he gets ready for another surgery.

Here are a few videos we made tonight... Enjoy!


  1. He IS Mr. Adorable! Look at those cheeks! Glad to hear that Jacob is gaining weight so well. I know how scary it is to have his next surgery looming right out there but life is completely different after the Glenn. It's much more relaxed and "normal". Thinking and praying for Jacob and your family!!
    heart hugs,

  2. OMG...Jacob is definitely Mr. Adorable!

    Praying for you all as the Glenn quickly approaches. Like Jenny said, life is better after the Glenn. It's more stable...more normal. We'll be praying for all of you as the time draws near.

    Lots of prayers and big heart hugs!

  3. Too cute! Such a sweet miracle.

  4. He is getting so big and so much cuter! He is a freaking doll baby! I am so glad he is home and thriving! WAY TO GO MOMMA AND BABY!
    I still pray for you daily!
    It sounds like you all are doing great! Keep it up!


  5. I live in Cross Lanes and have been following your blog. I have Hilton Honors points that I would love to have you use for your stay on the way to Jacob's next surgery. It's not much but it's something that could help. If you are interested, please provide me a way in which I may get in contact with you.

  6. That is so amazingly generous of you and would be a huge help if there is one on our route. We were planing on staying about halfway which is around Morgantown. Email me and I can give you my contact information. Thank you so much.