2/23/2011 78 Days Old

On the 78th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya stayed asleep as I fed her and got ready for work. When I left her oxygen level was at 100% and she was sleeping soundly. While I was at work Grandma Patti came by to see Maya. She still insists on calling her a little princess much to the disapointment of dad. I tell her to call her a little CEO, or pulitzer prize winner, Maybe even world famous artist, but she still calls her princess. Grandparents, They never listen.

This evening Grandma Kathy came by to see Maya. She held her while we ate dinner. Now KC and David are over to watch our cats play them dirty huskers. Maya is cuddled up on KC’s lap, taking a little after diner siesta. She has been awake a lot of the day today again. She is doing so well. We are so impressed with her strength. Today she laughed at a diaper when it tried to contain her. No diaper can match the diaper assassin. We ought to buy stock in oxyclean.

2/24/2011 79 Days Old

On the 79th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya and Erin stayed asleep until 11:00. I had a half day of work today so I was home by 12:30. When i got home Erin was holding Maya in bed. Maya had a heart problem this morning. Her alarm sounded at 11:00, her heart rate was too low. She is normally at about 160 beats per minute when she is awake. The alarm sounds at 75 beats per minute. Her heart rate stayed low for a few minutes before it gradually increased to normal. This happened three times today. We thought it might have been a faulty reading from the monitor, but I don’t think that is the case. She isn’t irritable or upset when this happens. She is a little lethargic, but that is it. In fact if she was not hooked up to her monitor we would probably never know that it had happened. We don’t know what any of that means, or wether to worry about it or not, but we are concerned. She seems to be doing fine now.

This afternoon our social worker from carousel came by. It is always good to talk to her. We met for about an hour and talked about every thing that is going on, with us and with Maya. After she left we sat on the couch and relaxed.

Tonight was just the three of us again. Erin cooked dinner while I played guitar for Maya. We ate dinner together and then watched us some Abed. Maya is a big fan. We just put Maya into a sleep sack and are trying to convince her that sleep is the cool thing to do.

2/25/2011 80 Days Old

On the 80th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Me and Maya were able to sleep in till 10:30 this morning. She had a good night. This afternoon Petra from Now I Lay Me Down To Sleep came by to do another photo shoot for Maya. Now I Lay Me Down To Sleep is a charity that arranges for photographers to take pictures of high risk newborns and still births at the hospital. We haven’t seen Petra since the day Maya was born. She was there to take pictures of Maya while she was in the NICU and after we brought Maya back to our room.

It was good to share our miracle baby with some one who does so much work for so many families like ours. I think it brought a little sunshine into Petra’s day, and that made us happy. Maya is just to special to keep to ourselves. She needs to touch the lives of as many people as possible in her short time with us.  She doesn’t get to see much happy in what she does with NILMDTS but this was a happy moment.  A couple of the images below are ones from today’s shoot.

Maya received some mail today from a friend of Erin’s.  It was from Texas and contained a beautiful letter to Maya and a gorgeous necklace. Maya has touched so many lives, it amazes us how far her reach really is.

This evening Sam and Gayle came over to eat with us and watch a movie.  More of our life like before Maya, but better.  Both of them have held Maya tonight.

2/26/2011 81 Days Old

The images below are from Petra, a photographer with Now I Lay Me Down to Sleep.  It is an volunteer organization that provides photography sessions for high risk infants and stillborns.  They provide such an amazing service to families like ours to have incredible images of one of the greatest days of our lives.

2/27/2011 82 Days Old

On the 82nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. We slept in this morning. I would like to say that we woke up to a beautiful sunshiney day, but reality would dictate other wise. It was ugly outside. We had fog so thick the sunshine could not make it through. All the better for sleeping in I guess.

When we finally did get out of bed we changed Maya into a a hoodie sweat suit. It even has pockets on the tummy. She looks so cute. Not that she needs any accessories to do so, but the hoodie sure doesn’t hurt. This morning was relaxing. I can’t even remember any thing that we did. We just sat around looking at Maya.

This afternoon Grandpa Bob and Grandma Chris came by to see Maya. They both got to hold her and didn’t even fall asleep a little bit. In the evening Susan brought by dinner. Originally Bob and Chris had planned on eating at home, but they were coerced into staying for diner by the aroma eminating from our oven. Susan made the most amazing meal we have had in a long time. Bob and Chris were glad that they had stayed, and my normal thought of how are we going to eat this much food was not an issue. Well done Susan.

This evening we held Maya and caught up on some TV watching. The fog of the morning has turned into thunderstorms tonight. Which I am sure will mix with the several inches of snow still on the ground to lead to flooding tomorrow. Oh well, at least we are cozy and warm, cooped up with the most beautiful girl in the history of the world.

Grandpa called this one Maya being G

2/28/2011 83 Days Old.

On the 83rd 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 Maya and I slept in a bit.  JJ woke me up before he left because Maya was fussy.  I think it was because she didn’t want him to go to work, and she wanted him to play hookie at home with us.  She didn’t fuss for too long though.

Grandma Patti came over this morning to help me with Maya.  She held her while I got some laundry done and made chili for dinner.  It was not a super exciting day, but to us that is ok.  After JJ got home David and Grandpa Greg came by to eat dinner with us.  David stayed to watch the basketball game.  Maya thinks David gets a little excited and is sometimes too critical of her cats.  She thinks it is funny he gets so worked up over the refs.

A little explanation of picture below… JJ got me this ring for Christmas.  It is a custom ring from a jeweler on Etsy.  It is my take on a mothers ring.  The large blue stone is Maya’s birthstone, and the small white stone is for JJ and I ( we both have April birthdays).  The third ring is just a little bit to make it pretty.  It is a stacking ring set that I plan to add to later.  I love it, one of my favorite gifts from my husband.

3/1/2011 84 Days Old

On the 84th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya stayed asleep through her morning feeding and I got ready for work. After I had gotten ready I noticed that Maya’s oxygen level had dropped. She was at 70 %, which is not extremely low, but it is lower than normal. Normally she bounces back quickly from her de-sats but this morning she did not bounce back up for a while. She was low like that for about 20 minutes. I held her and comforted her. We were looking for signs of what was wrong, but we could not find anything. It was a scary 20 minutes. After a long wait and a lot of worrying Maya’s sats returned to normal just in time for me to leave for work.

While I was at work Maya had a visit from her nurse. She weighed in at 7 pounds 10.5 ounces. There is still some debate on the sound of her lungs between Maya’s 2 nurses. One nurse thinks she hears a crackle that would indicate heart failure, one nurse thinks that her lungs sound normal. Once again we don’t really know much, but we think Maya is doing well.

This evening Krissie came by to help me with Maya while Erin made a trip to the chiropractor. Maya is wearing the cutest jeans today. She is wearing a striped onesie, jeans, and no socks. I don’t know what is cuter her jeans or her little toes poking out from underneath. Right now she is sleeping on Erin’s chest with one arm stretched out and the other curled up. Her little toes are peaking out from underneath. Every once in a while Erin interrupts her slumber with a laugh or a loud voice, and Maya’s eyes look strait up at Erin’s face as if to say. ” What the heck. I’m sleeping here.” This look up is followed by a few leg kicks, a squirm, and a stretch, and then back off to sleep.

3/2/2011 85 Days Old

On the 85th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya almost stayed asleep through her early morning feeding. She woke up right at the end to squirm and squak as the last couple of CCs made their way into her tummy. I had to get ready for work so I woke Erin up enough to put Maya in bed with her and continued getting ready fro work. Later Erin told me that Maya kept her a wake for a little while. Erin kept hearing a scratching sound coming from under Maya’s boppie. Maya had reached down under her boppie and was digging her finger nails into the sheets creating a spine tingling noise. Erin found her hand with one of her fingers and Maya grabbed on tight. As soon as her grip was wrapped around mamma’s finger she fell fast asleep. Mom followed her to slumber land soon after.

While I was at work Grandma Patti came by to see Maya. Maya also had a visit from her occupational therapist. We have some new therapies for Maya now. She has developed a stiff neck. She gets irritable and the only way to calm her is to hold her on her left side. She also sleeps on her left side in her bed, and surprise surprise the right side of her neck got stiff. So we have some stretching excersizes for her neck now. She sure doesn’t like those. I guess I wouldn’t like it much either if someone grabbed my head and twisted it back and forth.

This evening Grandma Kathy came by to spend some time with Maya. We ate dinner together, and grandma held Maya while I practiced guitar and Erin got ready to return to work tomorrow. We think we have a good plan for the overnight feedings tonight. It will be the first time that we have had to take care of Maya overnight when both of us are needing to wake up early the next morning. We’ll see how it goes. Wish us luck. We might need it.

3/3/2011 86 Days Old

On the 86th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Our first day both getting ready for work at the same time went well. We were able to take care of Maya, and both of us even got to work on time. The late night last night was not as smooth. I was able to get Maya to bed early last night. She was asleep in her bed by 10:30. After a few minutes in bed we noticed that her oxygen level was really low. It was almost low enough to sound her alarm, but she was sleeping peacefully. Normally when she de-sats she is irritable or crying, and we can see what is causing her to struggle. Last night was so scary because she was just resting. She wasn’t crying or squirming or getting ready to fill a diaper. After several minutes at a low oxygen level she began to climb back up. It was like she had an apnea, except for the fact that she was still breathing. We don’t know what to make of it other than the same thing that used to cause her apneas is now causing her de-sats. She recovered from her episode and had a peaceful night. When I awoke this morning she was happy as could be nestled in her bed. Her oxygen level was normal.

While I was at work today Grandma Kathy came by to take care of Maya. When I got home Maya’s nurse was here. She had just changed Maya’s feeding tube. Maya was resting. It always wears her out when we replace her tube. I talked with the nurse about Maya’s episode last night and about what she had heard in Maya’s lungs today. It seems that the crackle in Maya’s lungs has gotten worse. I didn’t have the courage to ask what that meant. We have been through so many ups and downs over the last 86 days that I have learned that looking for answers is not always the best use of my energy. So we talked about things that we could do for Maya when she de-sats, and we now have some comfort measures that we can use when Maya is struggling. That is what really matters. We need to adapt as Maya changes. We need to do as our social worker says ” aggressively treat for comfort.”

Tonight has been good. Maya is resting after her difficult day, and Erin is holding her after her difficult day. I am proud of them both.

3/4/2011 87 Days Old

On the 87th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin had to go work today so I was on my own with Maya this morning. She had kept me up for an hour at 2 different times last night. She had been a little irritable overnight and we had to bump up her oxygen so that she could sleep. I was able to sleep in until her 8:30 feeding. At 9:00 Grandma Patti came by to help me with Maya. We sat and held Maya all morning. We did not do much else. Her irritability continued through out the morning. We are able to control most of it with tylenol and a cool rag on her forehead. Around noon she finally woke up bright eyed and happy. It was good to see her beautiful blue eyes looking up at me.

After Erin got home from work I fixed us some brinner. Thats breakfast for dinner, for those of you not in the know. We had chorizo and eggs on corn tortillas. Erin held Maya in the kitchen as I cooked for us. After dinner Erin spent some much needed Maya time on the couch. It was good to see her holding Maya. Everything seems a little better when I see Maya in Erin’s arms. Maya knows her mom. Every time that Erin picks her up she relaxes and snuggles into her.

This evening Grandpa Bob and Grandma Chris came by with Jadin to see Maya. We once again are hanging out sipping some hot tea, and passing the time. There have been no snoozing grandparents tonight. There will be a snoozing dad here in another couple of minutes. Sleep seems like a complete waste of time when compared to holding Maya, but I guess there are limits to my theory.