Our San Francisco trip update

It’s been a long emotional week but we got the answers we were looking for and overall we feel at peace. The meeting with the second pediatric surgeon on Tuesday was interesting to say the least. He had a completely different bedside manner than the first doctor and was rather cavalier when talking about babies with “poor outcomes” as situations where they would “crash and burn.” He said this phrase not once, but several times. Not exactly the sensitivity I was looking for. Thankfully, we didn’t meet with him that first week or I would have been a mess. The other big difference with this doctor was that he doesn’t attempt the less invasive surgery method of doing it laparoscopically rather than opening the chest cavity.  The other doctor said he will try to do the surgery laparoscopically if he can, and only go to open if necessary. So that may be the deciding factor for us.  Wednesday was another ultrasound and appointment with the perinatalogist. Everything was pretty much the same on the ultrasound, the LHR changed a little – but we found out from UCSF that since the liver is down – the LHR is meaningless in predicting survival. The best part of my appointment was that my Doctor was very honest with me and told me his preference as to which doctor he would choose if it were him – which was a total answer to prayer.

Had a good flight down to SF on Thursday night, though it was really hard for me to leave Rowan – even though she is in awesome hands with my parents.  It was the first time Jon and I had left Rowan for more than one night, and the the first time we have flown without her. I kept feeling like I had forgotten something.  On Friday morning, after a delicious breakfast in the Haight district, we headed to our first ultrasound appointment.  The Ex-Chief of Radiology was there and he came in for the consult portion and apparently he ( Dr. Filly) is a sort of icon in the Radiology world – he has seen over 600 of these cases and trained under the guy that invented the ultrasound. He said of the factors that are important for our type of case – no other abnormalities, and liver down put us 2 for 2 for best case situation. The remaining factor would be the results of the fetal echo looking for any potential heart abnormalities and defects which also was in our favor. The other thing we learned  is that it is very unlikely that the liver would move at this point, which was a huge relief.  One less thing for me to obsess over.

Dr Lee, the pediatric surgeon and Director of the Fetal Treatment Center was very honest and open it was another answer to prayer. He said though while we are presenting in the better category for a CDH, it is still a very serious matter and critical we receive the best care. But though he considers UCSF to be the best in the world, he thinks given our set of circumstances, we are in good hands in Portland at Emmanuel with Dr Bliss. Dr Lee had heard of Dr Bliss and knew that he has done a good number of these surgeries. No where near the number probably that the surgeons at UCSF do- but really the surgery isn’t the greatest challenge – it really depends on Finley and how she comes out.  So that is another relief – we know where I will deliver and which surgeon will do Finley’s surgery. What we don’t know, and won’t know until the moment she is born is how much functional lung she will have him. Even in the “best case” category – 10-20% of these babies die and there is no predicting where we will fall. So, this is in God’s hands- which is no surprise, right?

I completely concur that UCSF is a world-class medical treatment center – everyone we met with was amazing. We were so blessed to be able to meet with some doctors that are leaders in the their field and having them evaluate our case really gave us the peace (as much as we can have) that we were seeking.

So every day I will pray that her lungs will continue to grow as much as possible and she will stabilize quickly after birth and that she doesn’t have any complications. The ultrasound tech and echo tech commented on how active Finley is and how much she kicked and fought when pushed on- they said she seemed very strong and feisty.  My prayer is that she is strong, a fighter and that with God’s hand- she will survive this.

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4 thoughts on “Our San Francisco trip update”

  1. Dear Liz,
    When I was young I was given a scripture that I have held onto because it has been applicable in alot of situations and it is my favorite because of course it is from God and the Holy Spirit who comfort us!
    2 Timothy 1:7
    For God has not given us a spirit of fear, but of power, love and a sound mind.

    Much Love and prayers for you and the family!
    Can’t wait to see you and Rowan and hang out.
    love ya
    Heather

  2. Liz,

    I had no idea about this until tonight and I just want to say my heart and prayers go out to you and your family. Your blog is so touching and I just want to thank you for sharing.

    Blake and I look forward to seeing you and Rowan at stroller strides soon. Take care.

    God Bless,
    Michelle Mehrabi

  3. Liz,

    Continuing to pray for you and your family. My son Callen’s surgeon was Dr. Bliss at Emanuel..and he is amazing. Complete answer to prayer for us as parents. He would spend lots of time just sitting and talking to us about life, not only the “hospital talk”. I know your daughter will be in amazing hands with Dr. Bliss.

    Jessica Wilson
    miracletwins.com

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