5/1/2011 144 Days Old

On the 144th day in the life of the most beautiful girl in the history of the world the morning began peacefully. We didn’t do anything today. We tried to sleep as much as possible. We are going to try to sleep some more. Goodnight

P.S. Maya is doing well.

5/2/2011 145 Days Old

On the 145th day in the life of the most beautiful girl in the history of the world the morning began peacefully. we were both able to get ready and get off to work with out any trouble. Grandma Patti came by to take care of Maya until I got home. Last night Maya got herself into a crank session. She was not happy about something. We are still giving her morphine once or twice a day, and it seems to help. It helped last night but not enough for her to just relax. She was doing some diaper assassination practice. She stayed cranky for 30 to 45 minutes, and cried the whole time. It was near the end of her crying that I realized that she was connected to her monitor and it had not gone off. Her sat had gotten low, but not low enough to make that awful sound that we have come to know. It was then that I realized that she really was a little bit better. I know we have had reports from the nurses and we have seen her awake and more happy recently, but I never really let myself think that her condition had improved very much. We know that she is not better, and she still has struggles ahead, but she is doing just a little bit better now than before. It is a happy confusion that we have found ourselves in. We hope that we stay confused a little longer. That would mean that Maya once again is doing what we thought could not be done. She is the strongest little thing I have ever seen.

5/3/2011 146 Days Old

On the 146th day in the life of the most beautiful girl in the history of the world the morning began peacefully. I woke up at about 7:00 when Erin had to leave for work. I thought that me and Maya would sleep late this morning. Maya had other ideas. She wasn’t cranky or hurting. She just didn’t want to sleep. We layed on the bed and every time my eyes would begin to shut Maya’s hand would go up to her face searching for her cannula. Maya didn’t want to sleep and she didn’t want me to sleep either. Eventually Maya won and we moved out to the couch.

At 11:30 or so Michelle came by to take care of Maya for a bit. I was badly in need of some coffee and we were all out. I finally got my coffee about noon. Maya did not go back to sleep until 1:30. The afternoon hours wee spent the opposite of the morning hours. Maya stayed asleep. She stayed asleep through her nurses visit. Her nurse was impressed with the sound of her lungs today. She is amazed at how well Maya is doing. Every time she comes over she tries to help us understand that trisomy babies don’t normally look as good as Maya. She seemed pretty cute lying in her boppie. She was still asleep when Erin got home at 6:30.

This evening Grandpa Bob and Grandma Chris made us dinner. Maya got to sit at the table with us and eat her foot too. Right now Maya is resting on grandpa. Maya had a good day today. I am hoping that her sleepy afternoon continues through the night.

5/4/2011 147 Days Old

On the 147th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya woke up just before I needed to leave for work. Erin was able to get her calmed down, and she was almost back to sleep by the time I left. While I was at work Grandma Patti came by to take care of Maya. For weeks now Maya has been practicing and getting better at reaching her little hand up and grabbing her cannula. Today she succeeded in pulling the cannula clear off her face. Grandma said “she pulled it off then swung it over her head like a lasso.” I can imagine she had a look of satisfaction on her face. Grandma’s face was probably a little different. Erin and Grandma were able to get her back to normal.

When I got home B.J. was over to see Maya. Grandma and Maya were siting on the couch. Maya slept for most of the day. She was snoozing when I got home.

This evening Grandma Kathy came by to see Maya. Maya is still tired and stayed asleep for most of the time. Our night is winding down now. We are hoping that Maya sleeping all day doesn’t mean that she will be up all night. Fingers crossed.

5/5/2011 148 Days Old

On the 148th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya stayed asleep as I got ready and left for work. Michelle came by today to take care of Maya while Erin worked. Maya stayed awake for the morning hours, and again in the afternoon. She is getting good with her left hand. Today she was able to get her hand to her mouth. Shortly after a lip puckering her tongue would come out to taste her fingers. She is starting to explore her world with more than just her eyes and ears. Her hands and mouth are new tools for discovery.

This evening Grandma Kathy came by with Tacos for Cinco de Mayo or Cinco de Maya as grandma would say. We ate our tacos and took turns holding Maya while watching The Big Bang Theory. Later in the evening Travis and Krissie came by to get some Maya time. It has been a long week and we are looking forward to some recovery time this weekend.

5/6/2011 149 Days Old

on the 149th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya woke up early and was a little bit cranky. I moved her up into bed with Erin and she seemed to calm down after a bit.

While I was at work Grandma Patti came by to take care of Maya. Maya had a nurses visit late in the afternoon. Her lungs are still sounding the same. She has been a little more tired today, and she has been cranky from time to time, but she is still doing well.

This evening Grandpa Bob came by to eat dinner with us, and see Maya. Maya got to sit at the table with us as we ate. She rolled to her side in her bounce bounce and cuddled up against the edge to fall asleep. During dinner BJ came by to see Maya. We got to hang out for a bit, and watch some Eddie Izzard stand up. We are all ready for some sleep tonight, and hopefully some sleeping in tomorrow.

5/7/2011 5 Months Old

A few pictures of Maya to capture her 5 month milestone!!  We are blessed and treasure each and every day she is here.

5/8/2011 Mother’s Day 151 Days Old

on the 151st day in the life of the most beautiful girl in the history of the world the morning did not begin peacefully. Maya had a tough night. She has had a lot of congestion since about Monday. We think that she has a cold. Last night the congestion built up and Maya was having a hard time breathing. She would try to sleep, but would wake up every few minutes to cough. Her alarm went off more times than I care to remember. We did not sleep much last night. There was a few hours between 1:00 and 4:00 that Maya stayed asleep. Her struggle continued until about 2:00 this afternoon. After a few doses of morphine Maya was finally able to get some rest.

Grandma Kathy came over this afternoon to watch Maya so that Erin and I could plant a garden. We were able to work in the yard for a few hours and got the garden done. Erin’s mothers day got a little better from then on. Maya stayed resting for the most part, and we got to eat dinner. Maya is still hurting a little, but she is doing resting now. We are hoping for an alarmless night. We need the sleep.

5/9/2011 152 Days Old

On the 152nd day in the life of the most beautiful girl in the history of the world the morning did not begin peacefully. Maya struggled again last night. She was up at about 4:00. I was able to get her calmed down and back to sleep by 5:30. She stayed asleep as we got ready for work. Grandma Patti came by today to take care of Maya while Me and Erin were at work. Maya did a little better during the morning.

When I got home at about lunch time Maya was asleep on the couch. At 3:00 Maya had a visit from her nurse and shortly after help was on the way. She now is the proud owner of a suction machine that I can vouch for its’ booger removing power. She is also on an antibiotic. When the suction machine got here at about 6:00 we immediately hooked it up and tried it out. Maya was not a fan. It immediately suctioned out more gunk than I care to describe here. After a few tries Maya was breathing easy for the first time since friday night. During the nurse visit we had discovered that Maya was breathing through her mouth most of the time. Her cannula only helps if she breathes through her nose. When her airway opened up she immediately got her color back. She is much more peaceful now.

This evening Grandma Kathy came by to see Maya and have dinner with us. Maya got to sleep on Erin’s shoulder for a while. We are so glad that she is breathing easier now.

5/10/2011 153 Days Old

On the 153rd day in the life of the most beautiful girl in the history of the world the morning did not begin peacefully. Maya’s trend of waking up at 4:00 continued this morning. The difference is that this morning when she woke up with congestion blocking her airway I was able to use her suction machine to clear it out. After an hour she got back to sleep. 8:30 was a repeat of 4:00. I woke to her alarm and a very upset baby. Once again the suction helped and she got calmed back down.

At 11:00 Michele came by to help out with Maya. By this time Maya was in much better shape. She stayed awake for most of the day fighting against sleep. If there is one thing that we have learned about Maya it is that she has an amazing will that won’t bend. She did not want to sleep. That was OK because she was relatively happy. Later in the afternoon Krissie came by to help out as well. Maya needed suctioning several times through out the day, but never got as bad as she did over night. I don’t like using the suctioning machine, and Maya doesn’t like it much either. The sound of her breathing easy after is the reward. I don’t know how we would get through with out it.

This evening Grandpa Bob and Grandma Chris came by and brought us dinner. Maya has been asleep now for several hours. She is breathing easy and her color is good. She looks so peaceful tonight. Hopefully her peace will last through the night.