Tuesday, December 30, 2008

Next Appointment at UCSF

I got the call today and our next appointment is January 7th @ 10am. Please pray that we get nothing but good news...

Video Montage

Monday, December 29, 2008

How our Journey Began

On November 14th, 2008, Craig and I went for our 18 week ultrasound knowing we would be able to find out the sex of our baby. Needless to say, we were very excited. I could tell almost immediately that he was all boy--you would have to be blind to miss that! I really thought that it was going to be a girl, but everyone else--especially Logan--always said it was going to be a boy. Once again, they were right---but I wasn't a bit disappointed, I was soo in LOVE with him already.

We had a weekend of complete bliss. We picked a name, Kaden Alex, spent all morning at Babies R Us registering, and I started to paint the nursery. It was Monday,I was painting (Craig was golfing) when I got "THE CALL" from the genetics counselor at Kaiser telling me that the radiologist found a problem with our ultrasound from Friday and it appeared that our son had a left congenital diaphragmatic hernia. She could not give me much information--what it meant, what caused it, how bad it was, etc., she just needed to schedule a level II ultrasound with the perinatologist in Sacramento. I made the appointment for that Wednesday, two days away, and was told that we would meet with her to discuss our options and then have the ultrasound and meet with the perinatologist to get the prognosis. She gave me her direct line and told me to call my husband and when he got home we could call her back with any questions.

It took Craig about 3 minutes to get from the 6th hole to our front door. Poor guy, I was such a wreck when I called him, he couldn't even understand what I was saying. I think he just got "there is something wrong with the baby" and immediately headed for the truck (with Jose--I ruined their golf game). He said he had such a hard time understanding what I was saying, he thought about calling an ambulance while he was enroute--I think he thought I had fallen or something had happened to me. That is the "cop" in him--he is always in "protection" mode! When he arrived, followed very shortly by Jose and then Naomie (I called her immediately after I called Craig), we called the genetics counselor to see, if now that there was a calm person in the room, we could get some more details and information on what CDH was. I didn't really find any comfort in the information that we got--the radiologist did not finish his report and it just stated that Kaden's intestines and stomach were in the left side of his chest and his heart was displaced to the right. She told us the prognosis was probably not good and we should think about termination. I told her termination was not an option for us and we would wait until Wednesday to see what the perinatologist could tell us.

Immediately, and I mean while Craig and I are on the phone, Naomie and Jose are on the internet looking up CDH, what it is, what it means, what the treatments are,etc. Those two were really my "rocks" in those first few days. Not for one second did they question that Kaden would beat the odds and be okay--they really encouraged us to remain positive. We then found out the UC San Francisco Fetal Treatment Center was #1 in the nation for treating babies with this defect, and the only hospital in the US that does a in-utero procedure called FETO (Fetal Endo Tracheal Occlusion). I knew we would ask for a referal to be seen by the specialists there, which the genetics counselor said Kaiser would do, if the perinatologist felt we were a canidate.

Those two days,waiting to see the specialist, I made all the phone calls, did alot of praying and crying, re-telling each of my family and friends about the diagnosis and getting NO sleep. Craig called in to work and took the week off to be with me--his office was so supportive and understanding. His Captain even called that day to let us know she would be praying for us and would be there if we needed anything. They have all been very good to us. We tried to go about our "daily" lives, whatever that means. We are very fortunate to have a very close circle of friends that we meet with every morning at Starbucks--every morning--and it was so difficult for me to go on Tuesday morning and face everyone, but I really needed their support. I always find unconditional love and support from them--always! I know I don't say it enough, but we really LOVE YOU GUYS!

Well, Wednesday comes and we are not given the best news. After doing some research before our appointment, I knew what to ask, what to look for, and what I wanted to hear. I knew that they would take what is called a "Lung-to-Head Ratio" (LHR) and the best prognosis was given to babies that had a LHR of 1.4 or more. That was the number I was looking for. Unfortunately, for us, that was not the number we were given. The doctor told us Kaden had a LHR of .2--VERY POOR PROGNOSIS--less than a 10% chance for survival. We were also told that he had a two-vessel umbilical cord, not the normal three vessel cord, and that it did not appear that his kidneys were functioning. I was devestated. I had done enough research to know that the CDH alone was bad, but if it presented with other abnormalities, the chances were very high that there was a genetic problem. They performed the amnio right there--we had to have a normal amnio to be seen at UCSF--and were told it would take 2 weeks for the results. We were in a total holding-pattern. It was Thanksgiving the next week and we had planned our yearly camping trip to the coast with the family and our RVing crew the "Cordelia Trailer Trash". We made the decision to go ahead and not change our plans and spend 10 days at the coast. Everyone was really understanding and didn't really talk about it, but I was so sad. We got home on Monday, Dec. 1st and I knew that they should be calling with the amnio results. And they did--they were normal!! My first glimmer of hope!

I was called by the genetics counselor and told that the Doctor had approved our referral to UCSF and that she was contacting them for a consultation--they would not see me until I was in my 22nd week (about 10 days away) and they would contact me directly. They called on Wed. the 3rd and scheduled me for Friday the 12th of December. It was going to be an all-day event! I was so excited.....until the genetics counselor called from Kaiser and told me that the nurse coordinator at UCSF said that the two-vessel cord would disqualify us for the in-utero procedure. I felt like I had been punched in the stomach! I knew that babies with a LHR of .2 would have NO chance for survival without the procedure. They recommend it for babies with a LTH ratio <1 and we thought that Kaden was on the severe end of the spectrum.

Well, we went for our appointment on the 12th, and aside from the traffic trying to get into the city, we got there without much stress. We went directly to ultrasound, and Dan, the sonographer, was great! It was amazing to get to look at Kaden for over an hour--and they look at everything... He just looked so perfect to me--I love him even more! From there we go to the fetal echocardiogram for the look-see at his heart. We spent over two hours there--Kaden would not cooperate and roll over for them to get a really good look at the left pulmonary artery so I was walking, drinking juice, jumping up and down--everything to try to get him to roll over. During this time, Dr. Lee, the director of the Fetal Treatment Center and the surgeon who would perform the in-utero procedure, stopped by because we were taking so long in echo and he had to get to surgery. He had gone over the ultrasound findings and wanted to stop in to let us know what they found. He told us that Kaden appeared to be completely normal--he had a normal three-vessel cord (not the two-vessel cord that we were told at Kaiser) and his kidneys were functioning normally--he even had a full bladder on the u/s. And his LHR was 1 to 1.2!! He said that we had about 4 weeks to decide about the FETO procedure, until the middle of January, but at this point Kaden was "on the fence" for even being a canidate. The risk for pre-term labor outweighed the benefit. And, we have the luxury of being able to do another ultrasound within that time to see if his LTH number had gone down. For the first time that day, I cried. We had been given HOPE!! I will cut to the chase at this point. After all the testing was done, we met with the case worker, and the specialist to go over the results and tour the NICU. Stephanie, our case worker, was great! They probably thought I was crazy--I am sure most mommies that spend the day doing what we did are an emotional wreck, but I was ELATED that Kaden was going to be given the best chance that we could offer him. For the first time in about 3 weeks, I thought I might actually bring home a healthy baby.

And that is were we are at on this day. I have gone back to enjoying my pregnancy and I have given it up to God. I know that He is with us in this journey and that we will learn alot about ourselves, each other, and we will meet alot of great people along the way. If nothing else, I hope our story will educate more people about CDH and treatment options--not just termination-- for mommies carrying babies with CDH.