3/1/2011 84 Days Old

March 1st, 2011

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

March 2nd, 2011

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

March 3rd, 2011

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

March 4th, 2011

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.

3/5/2011 88 Days Old

March 5th, 2011

Maya is resting up for her big birthday bash tomorrow. See you then


3/6/2011 89 Days Old

March 6th, 2011

On the 89th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya was able to sleep through most of the night. She is big enough now that she can go longer between feedings while sleeping. No more 2:30 AM feedings. The extra sleep is much appreciated. We needed it because today was Maya’s 3 month birthday party. We had the whole family over to celebrate. Tonight I thought that I would just share some pictures from the event.

3/7/2011 3 Month Birthday

March 7th, 2011

On the 90th day in the life of the most beautiful girl in the history of the world the morning began peacefully. We were able to skip Maya’s 2:30 feeding and woke up about 5:00. I fixed her food, and got ready for work. Before I left for work Maya had a heart episode. Her heart rate had dropped down really low last night. It had stayed low for about 10 minutes. This morning the same thing happened again. I left for work,but soon realized that I could not be away from my beautiful daughter today. So I came back home. When I got home she was a little cranky and her heart was running a little fast. I was able to get her calmed back down, and we fell asleep on the couch.

We called carousel and scheduled a nurses visit to figure out what was going on. We talked about all of the treatment options and decide that what we were already doing is still the best thing to do. She listened to Maya’s lungs. The right side sounded better today, but the left side may be being interfered with by her enlarged heart. She thinks that Maya’s heart rate fluctuations are something that Maya could live with for a while. It is still a scary thing to see, but she seems to cope with it, and has done better throughout the day.

Tonight Grandma Kathy is visiting Maya. Morgan is also over. We are just sitting around laughing at Mo. She is some what entertaining. We are hoping for a better night with Maya tonight. And I hope that I can make it to work tomorrow.

3/8/2011 91 Days Old

March 8th, 2011

On the 91st day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya had a good night. She rested peacefully for most of the night. Erin only had to wake up once to comfort her, and Maya was back to sleep in 15 minutes. The extra sleep gained by skipping the 2:30 am feeding is greatly appreciated. I was able to return to work today. When I left Maya and Erin were both asleep. It is funny that Maya and Erin share the same expressions while sleeping. They have the same scrunched up face when I flick the light on in the morning to get dressed. They have the same head kicked back arms flexed stretch when they first wake up. But the cutest is the way they both purse their lips as they try to avoid being pulled out of their slumber before they are ready. I kissed them both goodbye and headed out the door to an incredibly dreary day.

While I was at work Michelle came over to take care of Maya so that Erin could get some work done. When I got home both of my girls were sleeping about where they were when I left this morning. I curled up next to Erin in bed and we held Maya together. Tonight Grandpa Bob and Grandma Chris came by to eat dinner with us and get a little Maya time. Much to Maya’s dismay grandma Chris helped Erin give Maya a bath after dinner. She is still not a fan of bath time. It has been a good day for Maya. We haven’t noticed any heart rate problems and she has rested well today. She is curled up on Grandma’s lap now. It is days and nights like this one that we cherish every minute of.

3/9/2011 92 Days Old

March 9th, 2011

On the 92nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya had heart troubles last night. She woke up at about 4:00, and was hungry. We started her feeding and held her to calm her down. In the middle of her feeding her heart rate dropped down to below 60 beats per minute. Her heart rate bounced back and forth between 55 and about 90 for several minutes before it rebounded to 160. It dropped down a couple more times before she was able to regulate it for good. During these episodes we hold her and stop feeding her. She doesn’t seem to be irritated at all when this happens. She just kind of goes limp. Every muscle is completely relaxed. I don’t know how we would handle these episodes if we thought that she was hurting. After we got her feeding finished she went back to sleep and has been fine ever since.

After I left for work today Grandma Patti came by to watch Maya so that Erin could get some work done. They had a good day. Other than some impressive diaper filling it was an uneventful day. When I got home this evening Maya and Erin were sitting on the couch. We didn’t have any visitors tonight. It was just our little family. We ate dinner and are watching the big 12 tourney now. We are trying unsuccessfully to keep Maya awake so that she will sleep tonight. Somehow she got the idea in her head that she runs the show around here. Maybe it is all that princess stuff grandma is always telling her. We need to get some sleep tonight. Erin will be going into work tomorrow. Me and Grandma Kathy will be taking care of Maya.

3/10/2011 93 Days Old

March 10th, 2011

On the 93rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin began Maya’s feeding and let me sleep for a little bit longer. I was awoken by the sound af Maya’s alarm. She was having another heart episode. It lasted for about 20 minutes. We paused her feeding and tried to comfort her. Most of the time after her episodes she goes to sleep and stays asleep for a while. This morning was no different.

We both still went to work today. I only had a half day so I was able to return to Maya by lunch time. Grandma Kathy stayed with her today while I was at work, and then stayed through the afternoon. We took turns holding Maya on the couch. She has turned into quite the hot body when she sleeps. She turns into a little radiator every time her eyes close. There were more than a few times today when I was holding her and she was sleeping peacefully while generating plenty of sweat.

Erin got home shortly after 6:00, and she was in need of a Maya fix. As soon as Erin picked her up Maya knew that she was in her mothers arms and fell fast asleep. She had been grousing for a few minutes right before Erin got home. I think she knew that her mom would be home soon and wanted to encourage her dad to pass her over as soon as possible.

Our evening tonight went as most night go. Erin held Maya as I played guitar for them. We watched TV, and ate dinner. But tonight was different. I am on spring break now, and I don’t need to think about leaving Maya again for quite some time. The thought of that makes me happy. It will be a spring break full of Maya. I am looking forward to it.