I have been so lucky to have met so many amazing moms on this journey. The support has helped so much while coping with this. One mom that is very dear to me is Jennifer Marrone. We met through facebook while pregnant and in person later on here in Philly. She is from New Orleans and had a set of twins, Madden and Mia. Mia has HLHS like Jacob. For those of you who have been following her story she is doing very well. Her surgery was this morning and it went like textbook. Thank God it went so well. I am asking everyone to please also keep baby Mia and her family in your prayers as they are just beginning this journey.
The Today Show and NBC is doing a documentary about the twins and baby Mia's journey with HLHS. I will let everyone know as soon as I find out when it will air. They even scrubbed in and filmed the surgery. It will be very interesting to see and will be great for HLHS awareness.
Twins Madden (left) and Mia (Right) MarroneNow on to Jacob! Jake had a pretty good day today.
Here are the highlights:
Feeding:
We tried feeding him by bottle yesterday and again today. Both days he did very well. We have to go very slow because of his fast breathing. He tires very quickly. His feeding therapist says for him its like climbing a mountain while trying to gulp water. It is very hard for him. He gets so excited though and drinks from it so well. I hope we can make it work without putting him at risk because he loves it. Eventually his breathing will slow down and it will be easier. We want him to be able to do it at least a little bit so he doesnt loose that instinct. Even once a day would be good for him so he won't loose that.
Infection:
His incision looks so good today. The redness has faded and its already scabbing over. They did labs again today and his while blood cells are back down which means the infection is gong away. Thank God the antibiotics are working! The infection never went to his blood it was just a superficial skin infection, again thank GOD!
Heart Cath:
Jake is still set to have his heart cath on Friday. They may have to push him back to Monday depending on what else is on the schedule. This is just to explore his heart and get data so its not emergent. If something else comes in which needs to be done first then he may get bumped. Hoping he gets to go Friday because if it looks good then we would be able to start talking about discharge plans on Monday. If its not done until Monday than the earliest would be later that week. As I have said before we will get excited about going home the day they kick us out. Until then things are up to Jake and we have to take it day by day.
Even though this is not a HIGH risk procedure there are still risks. He has to go back on the vent AGAIN, and have anethesia. He also has risk of clotting and they go into the heart so there is always risk of bleeding or rhythem problems. Please, Please keep Jacob in your prayers. I am so nervous but I know we have to do it to make sure we know exactly what is going on. Echo's only give estimates, this will give them actual data to go by. They will be able to make sure there is no narrowing of the shunt, aorta or any of the arteries. They will also get a better look at how his lungs are working. So again we are asking for prayers.
As always thank you so much to everyone who has been fighting along with us and praying for Jacob. And thank you to everyone who has donated toward helping him get well. Our family never imagined we would face something like this and I can't tell you how much we appreciate everything.
Love and Heart Hugs
Kathy, Andy, Aidan and Jacob
Thanks for the update. Sounds like things are going well. Stay well Jacob.
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