7/27/2011 230 Days Old
On the 230th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya slept through the night last night. Except for her move from bed to couch she slept clear until 11:00. It is nice when she can rest peacefully but it also makes us aware of how hard she is having to work, and how tired she has been.
This morning Grandma Patti came by to help out with Maya. There wasn’t much help needed while Maya slept, but when she awoke she was very picky about how she wanted to be held. She is quite the talker now. When she is awake little noise come gurgling out of her little mouth nonstop. It is hard to tell if she is complaining or just wanting to make noise sometimes. In the afternoon Krissie dropped by to see Maya and work from our house for a while. At about 4:00 Maya went back to sleep.
This evening Grandma Kathy and Jennifer were both visiting. I had to leave the house for a bit, but I was told they took turns holding Maya and preparing for a baby shower on Friday. After I got back we gave Maya a bath. She still does not appreciate bath time. She just now drifted off to sleep in Erin’s arms.
7/29/2011 232 Days Old
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.
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On the 233rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. I stayed up with Maya after her 6:00 feeding. We moved out to the couch and Maya slept as I watched a replay of last years KSU vs MU football game. Erin was able to stay asleep until about 8:00.
We camped out on the couch with Maya for almost the entire day. Maya had a bad day today. We did get out to an open house while Grandma Chris watched Maya. She was seldom awake and not for very long. Her color was OK this morning, but this evening she really began to struggle. She is on multiple medications on a regular schedule now in an attempt to stay ahead of things. Even with all the meds Maya was still irritable this evening. We gave her a bath and got her ready for bed.
As we were sitting in bed waiting for her late feeding Maya woke up. For some reason out of the blue her wonderful eyes opened up and she started to talk to us and play with her tongue. It only lasted for a few minutes before her crankiness took over, but we were very happy to see it. We still don’t know how Maya will do from here forward, but we feel like we don’t have much more time with her. Her respiratory system just can’t seem to keep up. we are in a hard place right now. We would love to have as much time with her as we can get, but it is hard to see her like this. We will keep doing everything that we can to ease her suffering. We will continue to hold her and love on her as long as we can.
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