4/6/2011 120 Days Old

On the 120th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya woke up about 3:00 this morning. She kept Erin up for about an hour before Erin was able to get her back to sleep. When I woke up it was a full bed. Maya was asleep in her boppy next to Erin. They stayed that way for most of the time that I was getting ready for work. Right before I left Maya woke up and started to crank it up a bit. It is always hard to leave her i the morning, but it is a lot harder when she is cranky. I was able to leave though.

When I got home Maya and grandma Patti were sitting on the couch. Maya had a busy day. She had a visit from her occupational therapist, and her nutritionist. We got some more excersizes to do with Maya. She also got weighed today. She is 9 pounds 5 ounces, and 21 inches long, or tall. I guess it is inches long since she doesn’t stand on her own, but I think tall sounds better. she is getting really big.  She also had a visit from Rachel, James, and kids. Maya did not cooperate with their visit. She cried the whole time.  Rachel was able to calm her down just before they had to leave.

Tonight Grandma Kathy, KC, and Esther came by to spend some time with Maya. Maya has had an up and down day. She stayed asleep for much of the day, but was also a bit cranky. She has turned into quite the mommas girl. Several times today she cried until Erin came to the rescue. Sometimes she just wants her mom.

4/7/2011 4 Month Birthday

On the 121st 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 for work. She did not however have a very good night. She was up until about 12:00, and again from 3:00 – 4:00. She was upset over something and we could not seem to comfort her. Her oxygen level was very low for most of that time. Eventually she got back to sleep.

Today Grandpa Bob came over to watch Maya so that Erin could work. They were both sitting on the couch when I got home. Maya was asleep, and she stayed that way for some time. She gets cranky when we wake her up, so we just let her sleep tonight. It is her 4 month birthday, but the picture of her in her birthday onesie will have to wait until tomorrow. She is just too cranky tonight to try and change her clothes.

This evening we decided that we would celebrate Maya’s birthday just the three of us. I went out and picked up some thai food, and we just hung out and relaxed. We are all three very tired tonight. We are going to try to get to bed early tonight. We will have to see if that is ok with Maya.

4/8/2011 122 Days Old

On the 122nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Both of Maya’s parents had to go to work today. Grandma Kathy came by bright and early to take care of Maya. Maya had a rough night last night. She had a hard time keeping her oxygen level up. We were able to get some sleep, but we are still far short of the suggested 8 hours. Sometimes we manage to get 8 hours in two days, but never in one night. Grandma did a good job of taking care of Maya today. She got her to fall asleep on her shoulder for several hours throughout the day. It was good that Maya got some rest after her tough night.

This afternoon Maya had a visit from her nurse. She had to get her 4 month shots today. We decided to spread the 4 vaccines out over the next week so that it might be a little easier on her. She got the first two vaccines today, and will get two more next week. During the nurse visit we also discovered that Maya has broken blood capilaries all over her right arm. I can’t remember the name for the symptom but they are a result of her rough night. They show up as little dark red specs, almost like little tiny freckles. She only has them on her right arm. Her lungs sounded the same as they did on tuesday. Her right lobe is still showing signs of struggle.

Tonight has been a better night for Maya than the last few. She has been happy or asleep for most of the evening. Grandma Chris and Grandpa Bob brought us some sushi tonight. They are now catching up on some Maya time. Maya has been comfy in grandma’s lap for some time now. She just got done making some nice sucking sounds. She clicks her tongue back and forth making an adorable sound. Grandma was quite amused. We are hoping that Maya will have as good of an overnight as she has an evening.

We were able to take her 4 month picture yesterday after I posted the blog. Here is my girl on her 4 month birthday.

4/9/2011 123 Days Old

On the 123nd day in the life of the most beautiful girl in the history of the world we did something special.  Maya had her first pictures since the hospital without her feeding tube and oxygen.  We had to replace her feeding tube and we thought we would take advantage of the opportunity to snap a few pictures of her beautiful face free of tubes.  Kind of an emotional moment for us…

4/10/2011 124 Days Old

On the 124th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya had a difficult weekend, but this morning she was asleep and happy. She has been struggling more than usual this weekend. She is having a very difficult time keeping her oxygen up even when she is asleep. On friday night at about 1:00 she had worked herself up and seemed to be hurting. Her oxygen was extremely low, and we were out of things to try. We had to give her morphine for the first time. It was another scary moment in a long line of scary moments that we have had with Maya. After a few tears we were able to get are nerve up enough to give her the medicine. She reacted well and calmed down after about 15 minutes. Her oxygen came up shortly after. That night she did not recover fully. She could barely get her saturation above 80%.

Since Friday night we have had to give her morphine 4 more times. She reacts well to it. It calms her down and raises her saturation number. We were worried that on morphine Maya would just go to sleep, and not be able to interact with us, but that is not the case. She often is wide awake and happy. She interacts in the same ways that she always does.

Early this morning we had to give her morphine two different times. Since then she has been doing really well. We have had a lot of visitors. Grandma Kathy stopped by in the early afternoon as did Krissie and Travis. They wanted to show up on a sunday so that they would make the blog. Holly, Jay and Jadin came by to see Maya as well as Grandma Chris.

We are having a mellow evening. Erin is returning to work tomorrow, and we both need to catch up on some sleep. We are hoping for a peaceful night for Maya and for us.

4/11/2011 125 Days Old

On the 125th day in the life of the most beautiful girl in the history of the world the morning did not begin peacefully.  After getting to sleep around midnight Maya woke us up at 2:00. She was hurting and crying and nothing that we did seemed to help her feel better. The numbers on her sat monitor were the scariest yet. Later in the day we would find out that our monitor has been giving us false readings, but we did not know that at the time. We had to give her morphine again. This time it helped, but Maya was still not happy. Eventual at about 5:00 Maya was calmed down enough for us to feel like we could go to sleep. I was able to go back to sleep, and Erin stayed up to give Maya her 5:30 feeding. Afterward Erin attempted to go to work, but returned home quickly.

At 11:30 Maya had a visit from her nurse, our social worker, and our chaplain. This is when we finally found out that Maya’s monitor lead was not fitting correctly on her foot anymore. We had been seeing numbers on her monitor that had us believing that she was barely hanging on, and could not even when resting get her oxygen level up . When our nurse discovered the problem she moved Maya’s lead from her foot to her hand. Shortly after we saw her first good oxygen reading in some time. We are hoping that when we put her back on to her monitor tonight we can get an accurate reading of how she is doing, and we can ease our minds a bit. It has been a long weekend, and all three of us are in need of some rest.

Tomorrow we will be taking Maya to see a Dr. for the first time since she was 2 weeks old. She has developed some congestion in her lungs, and in her throat. We are hoping that our Dr. can do something to help Maya. We have not had much luck with Dr.s. There is a chance that Maya can get a nebulizer treatment that may help her breathe easier. We will have to see. We don’t want to get Maya out of the house only to be disappointed at the Dr.s office, but we have to try.

4/12/2011 126 Days Old

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

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

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

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!