Wednesday, June 9, 2010
An amazing little boy lost his 13 month battle with HLHS yesterday. Lorenzo Trujillo is a baby whom I have grown to know and love. His mother was one of the first people to reach out to me and support me when I learned of Jacob's diagnosis. Lorenzo like Jacob had an intact atrial septum. Shannon had in-utero surgery to place a stint in his heart prior to being born. He and Jacob had many similarities. Lorenzo was a fast breather and he had a g-tube. Shannon was from Colorado but traveled to Boston to give her baby the best chance possible. Shannon has always been an inspiration to me. Her love for Lorenzo was never ending. Lorenzo did very well with his 1st and second open heart surgery. A few month's ago he started having trouble with fluid build up. He was hospitalized multiple times for chest tubes. Recently Lorenzo got viral pneumonia, he was in the hospital and was about to be discharged when he unexpectedly passed away.
My heart aches for this family. Please pray for their strength and for peace during this tragic time.
Hearing this sad news about Lorenzo reminds me about how fragile Jacob is. Sometimes I look at him and forget how fragile he is. His breathing has even become "Normal" to us so its easy to forget that this little child is living with half of a working heart. The littlest things from breathing to eating are challenges in his everyday life. Every time these beautiful children pass I am reminded that I may not have him forever.
There are no guarantee's in life however in my reality there is even more of a chance that my sweet Jacob may not out live me. This although unfair is my reality. Regardless of how long Jacob has, be it a week or a lifetime it does not change what I will do. I will love this baby like everyday is my last. Each and every person should do this with their child. Don't waste a second. You may be tired and want peace and quiet but remember that there are no guarantees and one day you may be begging for those precious moments. Soak them in and don't look at what you don't have but look at what you do have. Look at your children and hold them tight.
Jacob will never feel sorry for himself or feel disabled. I will make it my mission in life to give him and Aidan a life of joy and happiness. To not pity themselves but to take every day with gratitude and hope. To appreciate what they are given and to love life and live it to their fullest. I have said many times that I am blessed. Many look at us with pity but I don't. Jacob has taught me so much and for that I am blessed. For that I am the luckiest mom in the world.
Jacob's appointment with the cardiologist went well. He continues to say how well Jacob looks. He said if it were not for the breathing you would never guess he was a cardiac baby. He is so chunky and his color is great. I pray Jacob continues to thrive! Next week I have to call Philly and set up an appointment for testing. It is hard to believe that in a month we may be there for his second surgery. We just got home. However this is one step closer to Jacob being healthier.
I also met with birth to three today. They are a program that helps families with kids who may have delays due to a medical condition. Jake now has a nutritionist, speech therapist, physical therapist, developmental therapist and a care coordinator. We will all meet on July 7th. Our house has become a revolving door lol. I love it! I want Jacob to have every resource available.
Please continue to pray for my beautiful Jacob. And please keep my friend Shannon in your prayers. Please pray for all of these heart warriors and angels who fight a fight that all of us can't fathom. These babies are precious miracles from God and I pray for them all daily.
Thank you for all of your support and prayers...
The Baker Family