Happy 6 Month Birthday Baby Boy!

Dear Jacob,

6 months ago I was not sure if I would ever know your smile. If I would ever be able to know your personality. 6 months ago I was embarking on a roller coaster ride that many could never imagine. A scary journey, exhausting journey... amazing journey. Your eyes are filled with such life, joy.. hope. I have said this many times but I can't say it enough. Thank you, Thank you so much for being my son. The love your daddy, Aidan and I have for you is everlasting. You have taught us all so much. You have taught us all to cherish every moment. You have touched the lives of people who don't even know you. Do you know how special you are? How beautiful you are? I am so proud of you.

You have overcome so much. You have beaten the odds. You are in the 50th percentile for your weight and 25th for your height. Do you understand how amazing that is? Most hypoplasts are not even on the chart! You are thriving! You were near death and now look at you. You knew you were meant to be here and you fought. Look at you know. A miracle from God. Thank you for fighting. Thank you for staying with me.

I used to tell people that I thought the worst thing that could ever happen to someone is the loss of a child. I was faced with that possibility, I still am. I used to fear life. You taught me that I can't go through life waiting for the end. I can't fear the unknown. Your smile makes me see that now is what matters. Every laugh, every smile, every cry. We can't control our future but we can control how we face life. Thank you, thank you for making me see this. You don't know what a wonderful gift that is.

I won't say the past 6 months were not stressful... you know me better than that. I will say that the past 6 months have meant the world to me. I would not trade them for anything. I pray we have years to come. I pray you outlive me. I pray you go on to spread your love and teach everyone you meet what it truly means to LIVE.

Whatever time we have know that it will be spent loving life. I know I am way to uptight, I worry way to much. I am the first to admit this... your father must be laughing as he reads this. Everyone I know must be laughing. So yes I do have some work to do on this new and improved Kathy. If you can do what you have done, I can start really living as well! Lets do this baby boy. I am right here with you, holding your hand... Always.


UPDATE:
Jacob is now 6 months old! I can't tell you how good that feels to say that. He weighs 16 pounds. His last x-ray looked great and his cardiologist was very pleased with how well he is doing. His oxygen SATs continue to improve. I have noticed the last few nights he has stayed in the 80s, last night he was 88 all night. That is great for him.

Today we went to the ear, nose and throat doctor. He thought Jake looked good. He is going to follow his tracheomalacia. We will still follow-up in Cincinnati but it will be good to have a local doctor in case we have questions. I also mentioned that CHOP said all of the hearing screen was not complete. He told me the major one was done so he is not concerned but he will do the other one when Jake is 18 months old.

GOOD NEWS! Aidan does not need his tonsils out. THANK YOU GOD! He said they were moderately large but he was not concerned that they will cause a problem. He said that with everything we have been through this year he saw no need to go that route unless it becomes an issue. Aidan's ear tubes are also out and his ears look great so no more need for ear plugs when he goes in water. Overall it was a great visit.

Medications:
Jacob is still on 6 medications. His diuretics were lowered to once a day instead of twice. In a month he will be off of them completely. Then we will be down to 4!

Jake will be on his blood pressure medicine and aspirin for the rest of his life. He will be on Bethanichol until the tracheomalacia goes away and the prevacid as long as he needs it.

Feeding:
Jake is doing better and better with his bottle feeding. At times he takes 100mls by bottle. Amazing considering 2 months ago he would not even take 10mls. We have been working on increasing his day feeds and lowering his night feeds. He is up to 130ml 5x a day. His night feed is lowered to 15mls an hour. He used to get 40ml an hour. In about 3 weeks he should be off of his night feed all together. Then we will work on condensing his day feeds into 3 times a day instead of 5. This will give us more opportunity for baby food and get him on a normal schedule.

He has not skipped a beat. He is taking it like a champ and progressing so quickly. He continues to impress everyone with his progress. He is also loving baby food. So far he has had carrots, squash, apple sauce and prunes. He eats it quicker than I can scoop it up with the spoon.

Physical Therapy:
Jake continues to reach his milestones. He is still working on rolling over. He has overcome that arm being in the way. I barely push on his back leg and he rolls right over. When he is on his belly he looks like he is trying to crawl. He moves his arms and legs like a sea turtle. He loves grabbing his feet. Puts just about everything in his mouth. He loves Aidan's old sing along stage. He pushes (pounds) on the buttons. Jake is starting to laugh so much more now. A funny thing we found out is that his incision is ticklish. He gives you deep belly laughs when you tickle it. He is starting to be able to support himself while sitting up more. It won't be long before he doesn't need that support.

Overall Jake is continuing to exceed our expectations and show the world that he is a fighter. He is stable... blissfully stable. We are starting to drift from patient life to normal baby life. Thankfully there is not much to report these day. So with that in mind I wanted to let everyone know that I won't be updating as often. I am busy enjoying life with my family. I will update at least once a month but it won't be weekly. I know how it is to check a blog daily to see what is going on and I don't want to leave anyone hanging. Thank you so much for the continued prayers. For all of the support. It means so much to use. Please come back and check on us periodically but don't worry if you don't see a post for a few weeks. We are living life ... a blissfully normal life... Baker style!

Love,
Andy, Kathy, Aidan and Jacob