7/29/2011 232 Days Old

July 29th, 2011

On the 231st day in the life of the most beautiful girl in the history of the world the morning began peacefully, but I forgot to blog.

On the 232nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin did not have to work today and we all stayed asleep until 8:30. Maya slept well through the night last night. She was only up once at about midnight.

This morning Maya had a visit from her nurse. She has been struggling for the last few days and the nurses visit confirmed her struggle. Her heart rate was very high, and she had a temp of 101.2. We gave her some morphine and some tylenol, and that helped a lot. From then on our day got a little crazy.

We got a call this morning that someone wanted to see our house from 2:00 to 4:00. After much debate we decided to drop the dogs off at K.C. and Michelle’s and head to Grandpa Bob and Grandma Chris’ house. We made it to drop off the dogs and were half way to grandpa’s by the time we got a call from our realtor saying they were done viewing our house. We turned around and came home.

Erin had a baby shower to throw this afternoon. While she left to do that I stayed with Maya. Krissie, Lowell, and Ruth came by for a bit to visit. Grandpa Bob and Grandma Chris along with Jadin also came later to fix dinner. Maya was really struggling at this point. I got a bit scared shortly after. Maya had not had good color all day and by the look of her her O2 level had been at 80 to 85%. I could tell that she was struggling harder and her oxygen level was lower. The scary part was how tired and asleep she was. I had moved her several time and each time a heart breaking weak cry would escape past her lips, but she would be right back asleep. She just could not wake up. That combined with the noises coming from her breathe got me a bit scared. I called her nurse for an extra visit, gave her some morphine, and suctioned her throat. By the time the nurse arrived she was doing a little better. At that time her O2 was fluctuating between 75 and 80%. I think that at her morst she was probably in the low 60% for an extended period of time.

The nurse thought that her air way must have been partially obstructed and that the suctioning had helped Maya out. Even after the suctioning and morphine her O2 level was still 75 – 80 %. We decided that we would put Maya on a morphine schedule from now on. She will get the drug every day 3 times a day, and she will get adavan once per day. We also decided that we would reduce her feeds by 8 CC. Her heart is just having to hard of a time with as much liquid as she was getting. Hopefully those three things will bring comfort to Maya. As hard as it is to think of this as the end of Maya’s life even though we are not sure of that, we must aggressively treat for comfort. The thought of missing some comfort care that might ease her suffering is our biggest worry. Even if Maya is able to recover from this, and lives much longer, none of the treatments that we have decided to give her will cause her any harm. As much as we want to believe that our strong little girl who has been to the brink of congestive heart failure and came back can come back from this, we can’t allow our hope for the future to cause us to decide against a comfort measure that may ease Maya’s pain. That was the hardest sentence I have ever had to write.

8 Responses to “7/29/2011 232 Days Old”

  1. sarah herron on July 30, 2011 12:52 pm

    You are an amazing family! I pray for Maya, you and Erin as the best parents a child could ask for.

  2. Tonya on July 30, 2011 1:10 pm

    so very many thousands of hugs to all of you!

    Tonya from FF

  3. Kathy on July 30, 2011 3:19 pm

    I am sending you many thoughts and prayers for Maya’s comfort. She truly is the most beautiful girl in the history of the world. I read your blog everyday and I am amazed by how wonderful you and your family are. I do not know you personally but I can feel the love you all have for each other and all the support your family gives is so heart warming. Again just wanted to say you are all in my thoughts and prayers and Thank you for sharing your precious Maya with us through your blog!
    God Bless you
    Kathy from FF

  4. Laura on July 30, 2011 7:32 pm

    Praying for peace for your family, and strength for beautiful Maya!

  5. Courtney on July 30, 2011 11:30 pm

    I feel a little like a stalker! I have been reading about your sweet Maya for the last 232 days. You two are the most amazing people I have ever known! Maya is just about the luckiest little girl in the world to have you two. My thoughts, as always, are with you!

  6. Belinda` on July 31, 2011 6:01 pm

    Many hugs and love to you all. Your baby is beautiful and your family is strong, and I am praying that Maya is comfortable whilst still gifting you with her beautiful blue eyes. xx

  7. Martha on July 31, 2011 7:14 pm

    I too feel like a little like a stalker, never commenting but only reading since Pattie posted about Maya on the MQP list. There is so much love surrounding you and Erin and little Maya from your family and friends near and far. You are doing an amazing job as parents for that beautiful little girl. My thoughts and prayers are with you daily.

  8. Tricia Walania on July 31, 2011 11:53 pm

    I am constantly praying for you all, I can’t imagine how hard of this is. You are amazing parents and Maya is such an amazing little girl who continues to touch people’s lives every day. Please let us know if you need anything. You are incredible parents and you continue to amaze me everyday with your strength.