Sunday, October 11, 2009

Details & Service Information

I feel like I should detail the events that led to Vincent's passing. If not for the followers of this blog then for myself. The previous post seemed so hopeful...I'm just still trying to make sense of everything that happened.

The day before he passed we checked in on him in the morning and his ventilator settings were back up. Evidently, he had some trouble that night and they had to up his settings because he kept de-satting. His ventilator settings were back to the maximum and his O2 was back to 96. His sats were in the 80s but his blood pressure was still very low. They did start weaning him off the Pavulon and we were able to see him open his eyes for the first time and what beautiful eyes they were. Looking back now, I wonder if when he was looking at us if he was trying to tell us something. Maybe he was trying to say hello or perhaps goodbye. I don't know but I remember feeling so sorry for him....for everything he was going through.

We decided to take a break and take a walk through Golden Gate Park. It was a beautiful day and it was nice to spend some time together and just take a break from everything. When we got back that evening, his sats had dropped into the 70s. The doctor on that evening came up to us and basically told us that he didn't think Vincent was going to make it through the night. He said that every time they tried to wean him off of anything his sats would drop. They started giving him the Pavulon again which seemed to help his sats but the doctor said that wasn't a long term solution.

We pretty much lost it...all the hope we had was gone. We felt powerless. We stayed with him the whole night just staring as his sats...watching them go up and was terrifying. We asked if they had a room at the hospital we could use to rest for a little bit and they were able to accommodate us with one. We layed down for a few hours and I remember dreaming that we were preparing to take him home. We were getting the car seat ready and driving to the hospital. I remember feeling excited and relieved that he was finally coming home with us.

It was at about 6:00 a.m. when we heard a knock on the door. I'll never forget that moment...we woke up and we just knew. We went to see Vincent and they had him on the hand ventilator and his sats were dropping into the 60s. As much as we didn't want him to...he was letting go. They put us in a room and brought Vincent in and we were able to hold him for the first and last time.

It's been over a week now and we're still trying to make sense of everything. Everyone has been very supportive and we thank you all for that. We have a great support group of friends, family and co-workers as well as our online followers. The doctors and nurses at UCSF were phenomenal, especially nurses Sue, Jeanine, Robin and Crista. I don't know how they do what they do but they are extraordinary people. Our genetic counselor, Katherine Button and Dr. Kobori at Kaiser have also been a great support through this whole thing.

We are planning a memorial service for Vincent next Saturday. Anyone is welcome to attend...the details are as follows:

Saturday, October 17th, 12pm noon

Saint Francis of Assisi
5111 San Felipe Road
San Jose, CA 95135


  1. My heart goes out to you! Thank you for sharing your final moments with sweet Vincent, it breaks my heart to read your story. Many prayers for your family during this difficult journey. May you find peace knowing what wonderful parents you were to Vincent.
    Joanna( LCDH

  2. Our hearts are brocken over your loss of your precious son Vincent. Thank you for sharing your story. We will always remember Vincent.
    We have you in our prayers.

  3. I began following your blog because another friend with a CDH baby has a link to your blog on her own. I had been watching your posts and thinking of Vincent often and hoping that things were going well. I was so sad when I saw that he had passed. Another beautiful baby with loving and wonderful parents who has left this world too soon. I'm sorry for your loss and I'm sorry that Vincent's path in life was so short. Please know that you have so many, even strangers like me, out there thinking of you and Vincent and holding you close to their hearts. He will not be forgotten. I hope that you are able to find some peace that his struggle is over. God Bless you and Vincent.

  4. God bless and take care. My prayers are with you. I know how hard it is : (

  5. Many prayers for comfort and peace in the days to come. May you be surrounded by much love as you remember your little Vincent, a beautiful little boy.

    (((HUGS))), Tracy Meats, mom to Ian, born with a LCDH on 4/3/04

  6. Reading your accounts of Vincent's last days was heartbreaking, yet I am so thankful that you've shared these tender moments with us. It makes me, a stranger to your family, feel even closer to your sweet little boy. Each time another baby passes, especially the CDHers..I don't know how to feel. I am beyond greatful that my daughter is with me and angry that other parents can't say the same thing. I will remember Vincent, along with the other angels, for a long time to come. The day after Vincent passed, so did the "retired" pastor from my church, Monsignor Cardiff. He LOVED children. I know that he his keeping watch over your boy.
    My deepest sympathy to you both.

  7. Robert and Chelsea,
    Our thoughts and prayers are with you both. We are so terribly sorry for your loss. Our hearts go out to you. May you find comfort in knowing that he is at peace.
    Love, Mike and Kirsten Grado

  8. My heart breaks for you. Prayers for you in the upcoming days, weeks, and years. Vincent is a strong little boy! ((hugs))

  9. Dear Chelsea and Robert,

    I just read your blog for the first time and am so very sorry for all that you and precious little Vincent had to go through. He is at peace and out of pain - he is with God. I feel quite helpless being so far away, but at least I helped get 2 beautiful, wonderful people together. Your strength is incredible and your love for one another will only grow stronger. May Vincent rest in peace. My thoughts are with you.

    With love,

  10. Reading this post brings me to that day in my own life. I know I have not left many comments, but Vincent will always be in my heart. I would love to make a painting to honor him if you are interested. I have also been taking pictures to honor babies too. Please see- and

    Just email me at if you are interested in either. Praying for you guys!Vincent has a great group of friends up there.


  11. Robert and Chelsea

    Hello, it is Shane Nelson, Nayeli's father.

    I just wanted to again extend my deepest sympathy. Know that you and your family are in my families prayers.

    As I mentioned to you at your precious young mans service, if there is anything at all my wife or I can do for you, please let us know.

    You can contact me at, or 925-895-9473.

    God bless you, all our love, Shane, Liz, and Nayeli