4/12/2011 126 Days Old

April 12th, 2011

On the 126th day in the life of the most beautiful girl in the history of the world the morning did not begin peacefully. I took off from work today to take Maya to the Dr. She has been doing better in the last two days, but she is still struggling. The trip to the Dr.s office ended up being a waste of time. At least this Dr.s office was polite and acted concerned as they told us that they would not help Maya. The weezing was not as bad today, which may have contributed to the Dr.s not wanting to treat Maya. It is a good thing that Maya is not weezing as much, but I can’t help but think that it was just for the trip to the Dr.

Other than a disappointing trip to the Dr. today was a good day. We don’t like stressing over taking Maya out of the house and subjecting her to all of the germs in a Dr. but we did get to use Maya’s car seat for the first time. She doesn’t like the car much, but the weather was nice. We got some help today from Michelle, and Grandma Chris. Grandma and Maya spent the afternoon on the couch as I mowed the lawn, and Erin worked at the table. This evening Grandpa Bob came over after work. We ate some fish tacos and hung out with Maya.

4/13/2011 127 Days Old

April 13th, 2011

On the 127th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya woke Erin up at 4:00 and I began Maya’s feeding at about 5:00. After eating she calmed down and went back to sleep. While I was at work Grandma Patti came by to take care of Maya while Erin worked from home. I had to work late tonight and by the time I got home Erin and Maya were relaxing on the couch.

Shortly after I got home Grandma Kathy came by to see Maya. We had to run some errands tonight, so I haven’t got to see Maya much. She did have a good day. She slept most of the time. She has developed an obsession with grabbing her cannula. She reach her little hand up to her cheek, extends her pointer finger, and then tries and tries until she has hooked it and pulled it out of her nose. When she is awake it is a constant cannula watch. I think she likes the attention.

Like I said earlier I have not got much time with Maya today, so I’m going to go with a short blog tonight. Got to go spend time with my girls.

4/14/2011 128 Days Old

April 14th, 2011

On the 128th day in the life of the most beautiful girl in the history of the world the morning began peacefully.  JJ had to go to work this morning, so he got up to do Maya’s 5:30 feeding.  She had a late night, so she slept through the feeding.  She was up to almost 1:00 last night because she slept quite a bit in the evening.  JJ let me sleep, so I woke up with her at the 8:30 feeding.

Michelle came by to help me in the morning so I could work.  Grandpa Bob also came after lunch to help so Michelle could go. Maya also had a visit from her nurse today.  She continues to hear the crackling and wheezing in her lungs.

Maya continues to keep us all on our toes with her game of grabby hands with her canula.  Mostly she plays with her left hand, but if we try and keep that hand pinned down she will eventually get the right hand going at the tubes.  Maya also got to do a little tummy time today.  Almost as soon as I layed her down, she rolled to her side.  She pushes and pulls her knees in and out until she rolls.

Tonight Jen came by to keep us company since JJ had to work late.  We enjoyed some good food and a little wheel.  Jen hasn’t seen Maya in a while, so they cuddled for a while. JJ got home a little while ago and is holding his girl now.  It’s awesome to see what a great dad he is.

4/15/2011 129 Days Old

April 15th, 2011

On the 129th day in the life of the most beautiful girl in the history of the world I have no idea how the morning began… This is Aunt Krissie, and I’m hijacking the blog tonight :) (when you’re the one that set it up, you can do things like that hee, hee).

I have no idea how the first part of the day went. When Uncle Travis and I got here tonight, Maya was sleeping quite peacefully. I think she had been kind of cranky shortly before we arrived, but has been a sleeping beauty for the majority of the evening tonight. She’s currently getting her food, and Uncle Travis and I are chilling, it’s a nice night with our sweet niece. Although she’s sleeping, she’s not ceased to give us an over abundance of cuteness, in little half smiles that make you wonder what she’s dreaming about, and adorable stretches, and of course the heart melting pucker face accompanied by her little sucking noises that she makes when she’s sleeping.

JJ and Erin always want the focus to be on Maya, but I’m going to tell you a little bit about them tonight :).

JJ and Erin are out on a date! They are attending a formal event for Erin’s work, and Uncle Travis and I are on Maya duty. I for one am quite proud of them for going, I’ve been proud of them for many things over the last several months. It is a privilege to call them family. I am amazed at the way they have been loving and caring for Maya, and how much they sacrifice for her, but it has also been great to see them love on and care for each other through this. Maya is one lucky duck to have such incredible parents.

I’d love for everyone to write a comment to JJ and Erin, and tell them how amazing they are! I’m sure this will make them a little embarrassed and terribly uncomfortable, but that’s what sister’s are for right? I’m also certain that if Maya could talk she’d want you to do this too, she’s obviously quite fond of her mom and dad.

I wish I had a picture of them in their formal attire to post, they looked gooooood. I’d say I’ll post one later, but I’m pretty sure they won’t let me have one now. :) Ok, Maya is about done with her feeding, so I’m going to turn my attention back to her. I love being this little girl’s aunt!

4/17/2011 131 Days Old

April 17th, 2011

On the 131th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya slept well last night until her 5:30 feeding. It took Erin quite a while to get her to fall back to sleep, but eventual Maya slept and so did Erin. They both stayed asleep until about 11:00. They needed the rest. It was going to be a busy day.

Maya had many visitors today. Erin has family in from out of town this weekend. Ron, Micki, and Katherine came by with Grandma Kathy and Austin and Eric. It was a beautiful day today, and we were able to spend some time out side with our visitors. Later Grandma Patti and Grandpa Greg came by to see Maya as well.

Maya had a better day today than she has been having. The last week Maya has been congested. It is not clear whether or not her head congestion was because of her heart, but it is clear that it was interfering with her breathing. When she wakes up she has a build up of gunk in her throat and she can’t seem to get her throat clear to breathe. This morning she had a little congestion, but most of the day she breathed a little easier. She still had times where she would hurt and she needed morphine a few times, but she responds really well to the medication. She had long times today when she was awake and not crying. Those times are very special to us. There are days when we think that they may never return, and she is so tired from her fight. But then there are days like today where she shows us what the word strong means. We are grateful for today.

A special thank you to Aunt Krissie for hijacking the blog Friday night. We had a great time out, but it was better to get back home  to our girl.

4/18/2011 132 Days Old

April 18th, 2011

On the 132nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Both me and Erin had to work this morning, so we handed Maya off to Grandma Patti at about 7:00. When I got home about lunch time Maya and Grandma were sitting on the couch. Her good day yesterday continued today. She had some struggles today, but was also awake and happy for long periods of time. I got some couch time with Maya this afternoon. We sat and watched some TV for most of the afternoon.

Maya had a visit from her nurse and her social worker this afternoon. Her check up went well. Her last visit was on Thursday, and it did not go as well. Last week her lungs were not sounding well. She had developed a strong wheeze and the crackle in her lungs has spread through out her lungs. When her nurse listened to her lungs today she got a puzzled look on her face. She could not hear the wheeze. She listened to both sides of the lungs and could not find it. For some reason Maya is doing a little better these last two days.

Tonight Grandpa Bob and Grandma Chris brought us some Thai food. We all are sitting around enjoying May during her awake time. It has been a good night. Tomorrow Erin will have to go to work, and I am home alone with little Maya. It will be the longest time that I have taken care of Maya by myself. I am a little nervous, but also excited. I better go rest up.

April 19, 2011 133 Days Old

April 19th, 2011

On the 133rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin had to go to work this morning, but it was my day off. My first day taking care of Maya alone went well. I did get a little help this afternoon, when Krissie came by. This morning I thought that me and Maya would sleep in. Maya went along with the plan but the dogs did not. I did get to sleep until 7:30, which sounds early, but it is a lot better than 5:30.

Maya had a good day today. She was happy for almost the entire day. She had two cranky spells this afternoon, but was able to comfort herself. She only needed morphine once today. Her diaper assassination has gotten more advanced. It used to be that before she attacked she had quite a battle cry. We always knew when one was coming. She must have decided to work ninja style, because now there is no warning. Sometimes she doesn’t even wake up for more than a few seconds, then bam diaper down. She is quite sneaky.

This evening it was just the three of us. Erin made us a great dinner, and so far Maya has slept all night. I hope that trend continues through the night.

4/20/2011 134 Days Old

April 20th, 2011

On the 134th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin did not get much sleep last night, so I woke up to take car of Maya at about 5:00. I fed her a little early and she was able to get back to sleep before I had to get ready for work.

After I left Grandma Patti came by to take car of Maya while Erin worked from home. When I got home there were quite a few stories of the diapers that gave their lives to unsuccessfully  protect a onesie. Maya is on her fourth outfit of the day. Apparently one of her hit jobs was epic. Erin did not take any pictures. We have to take her word for it.

Maya has been awake most of the day. She would not let grandma put her down. When I got home grandma was holding up a book for Maya so that she can practice focusing her eyes. On days like these last few we really try to help her development as much as possible. She is so tired from her fight most of the time that she sleeps most of the day, so when we get a chance to stimulate her little brain we try not to miss it. She was doing an excellent job of focusing today. She would look right at the pictures in the book, and we could see the wheels in her head turning. Grandma made her a high contrast book a while back. She quilted and sowed together a few pages of white shapes with colored outlines on top of a black background. Grandma is trying to teach her shapes. I think from here we will move on to Dr. Seuss and then maybe War and Peace, Les Miserables.

This evening Grandam Kathy came by to see Maya. She got to help Erin give Maya a bath, and got to hold her for a while. Maya just now finally got to sleep. We are hoping that her day of diaper disasters, and awake time will lead to a sound sleep tonight. Logic would tell us that would be the case, but we all now know that Maya runs the show, so we will see what she thinks about it.

4/21/2011 135 Days Old

April 21st, 2011

I forgot to blog tonight and since it is 11:00…. See you tomorrow.

P.S. Maya is well

4/22/2011 136 Days Old

April 22nd, 2011

On the 136th day in the life of the most beautiful girl in the history of the world the morning began peacefully. I got ready for work, and moved Maya into bed with Erin before I left. She slept well last night. When I got home she was on the couch with Grandma Patti. She had a visit from her nurse today. The nurse said that her lungs sounded better. Maya still has a crackle in her lungs but her nurse seemed to think it might have sounded less than before. She did really well today.

Tonight we had a little celebration. Tomorrow is Erin’s birthday. Tonight Grandpa Bob and Grandma Chris came by to see Maya and eat dinner with us. After dinner KC and Michelle, Esther, Micah, and Luke all came by. Right after they got here KC was holding her when she released an epic flurry of diaper disasters. She was pushing so hard that she spit up a bit. After I got her throat clear of the spit up I began to change her diaper. It was the fullest diaper i have ever seen. Front to back and side to side there was no white left. When I was already three wet wipes in she let out a little more. Each time I wiped she let out a little more. I have never seen so much come from so little. It was a craptastrophe. Every one in the house got a good laugh. 7 wipes and two diapers later she was all cleaned up.

We are relaxing from our day now. Grandpa Is holding Maya as she looks around the room. We might have had too much wine and birthday cake. Sleep is sounding really good right now.