2nd Appt. at UCSF January 7th, 2009

We JUST got home (4pm here). It was a long day....

Here is my FAVORITE pic from today. It is his face--you can see his open mouth, his nose and his eyes. I know that ultrasound pics are so hard to 'see', but look at it for a while and you can see he is quite adorable!

It went pretty good. Kaden's lung-to-head ratio was about the same 1.1 to 1.2 vs. 1.0 to 1.2 last time. Dr. Lee said he would still to the tracheal occlusion for us if we wanted it, but after discussing all the risks involved, we just could not bring ourselves to do it. He said he felt we were making the right decision (I LOVE this man!)--which is a hard thing for him to say because he wants to be able to do the procedure for the study, but because they cannot give a difinitive answer as to the benefit at this early stage in the study (they have only done 7 tracheal occlusions) the risks are to high to be ignored. If they told us Kaden's LTH ratio was .8 or less, we would probably do it, but with 1.4 being the best, I am okay with 1-1.2. The harsh reality is that any baby with CDH is only given a 50/50 chance at survival at less than 1.4. I would never be able to forgive myself if we did the procedure and something happened because of it and Kaden didn't make it. We have decided to continue to let God work his miracle and pray that he will heal him after he is born and he will be in the 50% that survive.

On a good note. He was still measuring about 5 days ahead on growth and his estimated weight was 2 lbs. His heart, while still on the right, still looks normal and is beating strong! The team says he look really good and healthy, and they can see lung tissue developing--even a small amount on the left side. So I remain extremely hopeful that we will be able to play out the hand we are dealt and that Kaden will do well. If there is one thing that I have learned along this journey is that NO CDH BABY IS THE SAME. I have found so many parents that have gone thru or are going thru what we are and you cannot compare "numbers to numbers" Babies that have had next to no lung tissue at birth have lived and are thriving (after hernia repair and long NICU stays) and then there are babies that had LTH ratio's over 1.4 that did not make it. It all has to do with how well they respond to treatment after birth. Just continue to pray that Kaden will be one of the babies that can fight the long, hard FIGHT!!

My phone must have rang about 20 times during the appt. Everyone has just been so great to us and concerned for our little guy. I know we say it alot, but your prayers and support are invaluable to all of us.

I am saddened by the news...
Tonight I am praying for the families whose babies lost their CDH battles this week. Their pain is unimaginable and my heartfelt condolences go out to them. You think you can prepare yourself for either outcome, but the pain of the loss of your child, after such a fight for life is hard to understand. And to have to expalin it to your other little ones is even more painful. I know how difficult it is for Logan (he is 5)to understand that his baby brother is "sick", and how it will be really confusing to him if by God's choice we don't get to bring Kaden home. They are just so young, they expect us, as adults, to be able to fix anything.