8/1/2011 234 Days Old

August 1st, 2011

On the 234th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya was up once during the night from 3:00 until 3:30. This morning her condition was about the same as it has been for the past few days. She was very tired and her color did not look good. She rested all morning. Erin worked from home today. I hung out with Maya on the couch. She slept for most of the day. She had a nurse visit at 10:00. She will have daily nurse visits for the rest of the week.

That was not her last nurse visit of the day. after her 4:00 feeding Maya’s struggled harder than we have ever seen. She had not been awake all day and that concerned us. We knew that her heart rate was high and she had a temperature as well. After her feeding she really lost her color. We watched her toes turn blue, which we have seen before, and then noticed that the blue was spreading. Most of her feet and all of her hands were blue by the time she stablilized. We called her nurse for another visit, and phoned our families to let them know what was going on. It was the worst thing that we have seen from Maya since she had her last apnea. At the time I had no idea that the blue that had taken over her hands and feet would stop spreading. But it did.

When her nurse got here she had a temp again and her heart rate was 194 BPM. Her oxygen saturation was in the low 70%. She had recovered the color in her feet and just her toes and her fingers were left with reminders of the trauma. Slowly over the next several hours her color came back to her toes and fingers. She now has swings that set on very fast. I can be looking at her and think that her color looks really good, and 2 minutes later her lips are getting dusky.

When word got out to our families they all began to come over. My sister Krissie made dinner for every one, and they all got to hold Maya. Here is the list of everyone who was here.

Grandma Patti and Grandpa Greg

Grandpa Bob and Grandma Chris

Grandma Kathy

Krissie and Travis

K.C. and Michelle



It was a full house , but it helped to pass the time. Maya has stabilized for now. It is times like these that we don’t know what to do. Our entire focus is on Maya. I can’t even turn on the TV when she is struggling this hard. When she is stable we hold her and sit and wait. We know that she will continue to struggle and that at some point she will not be able to keep up the fight. So our world is on pause for a while. It will take Both myself and Erin, with help from our family and friends to take care of Maya as she goes through this. We hope that we can find the strength, and we know we will be able to find the support that we need.

9 Responses to “8/1/2011 234 Days Old”

  1. Karen (Slaterbaby on FF) on August 1, 2011 11:38 pm

    Thank you for sharing your beautiful Maya. She is truly amazing and I am sending you all strength and spirit as well as light and love.

    Karen (Slaterbaby on FF)

  2. Brooke on August 2, 2011 3:31 am

    Have been following your beautifully written story of precious Maya. Thank you for allowing us a glimpse of her precious little life. What a beauty she is! Many prayers for her as she struggles. I pray also for strength for you guys as I can’t even imagine how hard this is for you.
    FF December 2010 mom ‘mom2chris’

  3. LeeAnne on August 2, 2011 6:07 am

    We’ve never met but I have read your blog for the past 234 days and feel honored to have had the opportunity to be touched by Maya’s life. Your journey has been both heartbreaking and beautiful and I thank you for sharing it with us. Your family will continue to be in my thoughts and prayers.

  4. Kathy on August 2, 2011 6:15 am

    Sending you all many hugs and prayers! I pray that God will give you all the strength you need. You are all in my thoughts daily.
    God bless you
    Kathy from FF

  5. Kendel (trtl6941 on FF) on August 2, 2011 8:06 am

    I have never commented before, but have been following your blog from the beginning. She is such a sweet baby, thank you for letting us into your lives and sharing Maya’s journey. Sending lots of love to you all!

  6. Sharon on August 2, 2011 8:16 am

    Jim and I have been praying for Maya and for you, JJ and Erin also. You are truly amazing parents and Maya is an amazing child. We love you all and wish we could be there.

    May God strengthen you and bless you!
    Sharon and Jim

  7. Amy Coleman on August 2, 2011 8:51 am

    Erin & JJ – I hear about Maya every day from Grandma Chris and, of course, I read your blog daily. Thank you for sharing Maya with us and for keeping us informed about her many accomplishments. She is such a trooper!! Please know that Maya, both of you, and your family are in my prayers. Maya is very blessed to have you as her parents and to have such an awesome family circle. You are both amazingly strong and wise and give Maya so much love. I pray that God will give you the strength and wisdom that you need to care for her (and care for yourselves).

    Amy Coleman

  8. Danielle on August 2, 2011 2:03 pm

    I go through the day thinking about Maya. She is such a beautiful, strong baby girl. She has grabbed a hold of my heart and I haven’t even met her. It’s easy to see where Maya gets her strengh and determination from. My thoughts and prayers are always with her.
    Danielle (nubbins on FF)

  9. Grandma Nancy on August 3, 2011 9:13 pm

    I too have never met either you or your family or been blessed by being able to hold your dear sweet Maya. You are in my prayers each and every day. What wonderful parents you are and how blessed you have been to have such an angel here on earth with you. God bless and keep all of you.