2/13/2011 68 Days Old
Maya’s Playlist.
Jack Johnson, On and On
Bob Dylan, Various songs
Bare Naked Ladies, Roack Spectacle
On the 68th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya has been recovering from her vaccinations all weekend. She got her shots on friday and has been asleep ever since. She woke up today at about 3:00 and was wide eyed and active for 3 hours. It was good to see her thriving again. Since her shots she had lost her cry. She would open her mouth to try to push out a wail and end up letting out a tiny squeak. She sounded like some one who had lost their voice. Add to that the fever and aches that came with the vaccinations and it wa a hard weekend for her. She is doing much better tonight. Her cry is not up to full force yet, but it is starting to come back to her, and she is less distressed tonight.
Her day today was very relaxing and mellow. We slept in, we watched some TV we listened to some music and that was about it. This afternoon Travis and Krissie came by to see our beautiful girl. It was a really warm day today so we decided Maya need to go outside and find out what a breeze feels like. We wrapped her up, put on one of her fasionista hats, and switched her to her portable air tank. We were only outside for a few minutes. the wind had picked up and Maya forgot her sunglasses. We just stood on the front stoop for a few minutes and took some pictures. It was one of the things that we had wanted her to experience for a long time. We never knew if she would make it long enough to feel a warm breeze on her cheek. She was able to experience a new thing today, and that was pretty cool.
This evening Maya had many visitors. Elizabeth came by and brought us dinner. She got to see Maya for the second time. Dinner was great. We had bratwurst and potatoes and salad. Thanks Elizabeth. Maya also had Grandpa Greg and Kristi stop by. Kristi brought some cheesecake and a headband for Maya. Maya likes the head band, we will let you know her feelings about the cheesecake in a few days. Grandpa Bob and Grandma Chris also came by this evening for some Maya time. We are sipping our ginger tea and admiring Maya. It has been a nice quiet evening with the most beautiful girl in the history of the world
2/14/2011 Valentine’s Day 69 Days Old
On the 69th day in the life of the most beautiful girl in the history of the world the morning did not begin peacefully. Maya woke up for her 5:30 feeding. She was upset and crying. This often happens just before her feedings, but this morning it did not stop when she got a full belly. She kept crying and squirming long after she was done eating. We gave her some tylenol and I held her to try and comfort her but nothing worked. She would crane her head as far back as it would go and whip it back and forth. It was one of the scariest things I have ever seen. I had given her some tylenol at the start of her feeding, and eventual the combination of the tylenol kicking in and her wearing down she fell asleep. Because of her struggle this morning I stayed home from work. I wanted to make sure that if we needed to call her nurse that I would be there. She has been asleep ever since.
Erin made breakfast this morning before I woke up. She made banana pancakes in the shape of a heart.
At noon Krissie came by to help us with Maya. By this time Maya was sleeping soundly, and other than a few impressive diaper disasters it was an uneventful afternoon. I was able to get out and pick up some tulips for Erin and Maya. It was the first time I bought flowers for someone other than Erin, but I don’t think she minded.
2/15/2011 70 Days Old
On the 70th day in the life of the most beautiful girl in the history of the world the morning began peacefully. There was no crying and thrashing this morning. I woke up to Maya sleeping soundly. Her bed holds her at an incline, and overnight as she sleeps she slides deeper and deeper into her blanket. Her legs curl up to her chest and her feet poke out from the edge of her blanket. That is how I found Maya this morning. Snuggled in tight in a deep sleep. I smiled.
She didn’t make it easy for me to leave though. As I was kissing her goodbye this morning I reached my hand around her back to give her a pat when I noticed her onesie was soaked. Another onesie fell victim to the diaper assasin. I had to wake Erin up to help me change her quickly and hustle off to work.
While I was at work today Maya had a visit from her nurse. The crackle in her lungs sounds the same as it has for the past couple weeks. It hasn’t gotten better, but thankfully it hasn’t gotten worse. She is a resilient little girl.
This evening Grandpa Bob and Grandma Chris came by to see Maya and make us dinner. Maya is now big enough to sit in her bouncy seat while we eat. We set it on the table so we could all eat together. We ate our quesadillas and admired Maya. We are now listening to the Allman Brothers Band and sipping our tea. Maya is calming down from a recent crying session and grandpa is getting some Maya time. We will go to bed early tonight. We are worn out from watching our wildcats eat some chicken last night.
E.B.A.W.
Filed under Uncategorized | Comments (2)2/16/2011 71 Days Old
On the 71st day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya stayed asleep through her 5:30 feeding and I was off to work. Today was my half day so I was home around lunch time. Maya was just getting over a cranky period. She now has to be on Tylenol all the time. When it wears off she definitely lets us know. We try to keep her on a tylenol schedule. She feeds every three hours and takes tylenol every four hours. As long as we keep that schedule she does alright.
This afternoon Maya had a visit from her dietition. She weighed in at 7 pounds 4 ounces. She is growing right on pace. Not too fast not too slow. She also had a visit from Kendall her photographer. We got some shots of all three of us in the setting sun light. We will have some of Kendall’s work posted soon. After our dietition apointment and our photo shoot. Lori stopped by to see Maya. Lori got to hold her as she finished eating. After Lori, Grandma Kathy came by. It was one visitor showing up as one was leaving all afternoon.
This evening we sat with Grandma and watched TV. Maya rested peacefully. She is sleeping now while Erin holds her. We are hoping for a restful night. It is time to go to bed. Tuck Maya in give her a kiss and hope she rests well.
2/17/2011 72 Days Old
On the 72nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya slept through her 5:30 feeding. It was a good morning to sleep in. I took care of Maya while Erin slept in. We are trying to get used to sleeping whenever we can. A few hours here and a few hours there don’t seem to add up. So I let Erin sleep in all morning. It was just Me and my baby girl. We opened not just the shades but the windows and let the fresh air fill the room. I love the first warm days signaling spring is close. It was one of those days when even inside you can smell the sunshine. I am happy Maya got to experience it.
After Erin woke up we put Maya into her stroller and went for a walk. We made it up to the park, took a lap, and then came home. It was the furthest Maya had been from her crib in six weeks. Every time we would turn a corner and the sun would dip under her shade her forehead would scrunch up and she would let out a whimper. We made it home with out any problems.
After we got home we hooked Maya up to her monitor so that Erin could run to the store and I could take a turn napping. I never got to sleep. As Maya was falling asleep I noticed that her heart rate had gone down to 90. She is normally at 160. She was down at 90 for a few minutes and then her heart rate shot up to 190. When her heart is racing that high she is very irritable. She cried for about an hour. It was another scary moment. Eventually she calmed down. She fell asleep and has been asleep ever since. We are hoping for a peaceful night.
Today, just like every day with Maya was many things. There was joy and love and a beautiful little girl. There was excitement , and peacefulness, and terror. She takes us for a ride every day. She makes every little thing of every day important. Even the tiniest thing like going for a walk in the park.
These Photos were taken by Kendall Herman Photography. She had been great. Maya highly recomends her work.
2/18/2011 73 Days Old
On the 73rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. The evening was another story. Maya woke up shortly after her 2:30 feeding and decided to stay awake until her 5:30 feeding was over. For the most part she was content sitting with me (Erin), but everytime I tried to put her down she would fuss and squirm. She finally calmed down during her 5:30 feeding, just in time for JJ to get up and get ready for work.
Grandma Patti came by to help out today. She has been out with a cold since earlier this week, but got the all clear from the doctor (Grandpa Greg) to come see Maya. She was very excited to spend the day with us. Michelle and Luke came by for a visit as well. They stopped by to bring Maya her Valentines gift and some delicious chocolates for JJ and I. In Michelle’s words Maya’s gift was “completely self serving”. Maya is now the proud owner of a “I love my Auntie” onesie. It is very cute, and not all pink which makes JJ happy. Later, Ali and Jenny came by for a visit. Everyone loves to get their snuggle time in with Maya.
change of blogger (Erin says Bye)
Maya’s nurse Janet came by this evening as well. She was very impressed with Maya’s growth and how well she is doing. Since Jeana has been coming more often, Janet”s last visit was a few weeks ago. Maya has changed quite a bit in a few weeks. She was telling us how she is doing better than they typically see babies with trisomy 18. It was good to hear. We don’t have any one to compare her to and we were worried that she was not doing well. She is struggling, but after we talk to Janet we always feel more confident. She has a way of making us feel like we are doing a job taking care of Maya, which is something me and Erin don’t often feel. Maya’s nurses amaze me on a regular basis. They do amazing work and we would be lost without them.
This evening Grandpa Bob and Grandma Chris came by to see their grand daughter. Erin made an awesome dinner and we are sipping our tea and watching a movie now. Maya is nestled on Grandma’s lap. It was a nice night.
There will be another special saturday post tomorrow. Stay tuned.
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2/20/2011 75 Days Old
On the 75th day in the life of the most beautiful girl in the history of the world the morning began peacefully. At least I think it did. Erin took care of Maya this morning and I caught up on some sleep. When I finally did wake up Maya was fast asleep in her bed. I picked her up to change her diaper and realized that all of her clothes were damp. She had done some serious sweating last night. She had also completely destroyed a diaper. Another victim of the diaper assassin. Other than the sweating Maya had a great night. Her oxygen levels had been good all night.
This afternoon Krissie and Travis came by to see Maya. They had been out of town all week and had not seen her. It is funny that whenever someone sees Maya for the first time in a long time they say “Wow she is so much bigger and looks so different.” We see her every day and don’t really notice the gradual change each day that adds up to a different beautiful girl at the end of a week. We sat around and talked and played a game. We never turned on the TV today. It was an entire day that was just about Maya and her visitors.
This evening grandpa Bob and Grandma Chris came by. They got to hold her, and Bob only fell asleep for a little while. After Bob and Chris, Grandma Patti and Grandpa Greg stopped by. The TV stayed turned off. We sat and talked. It was a nice slow night. Not too much going on just listening to music and relaxing.
Maya’s Playlist
Joe Cocker, Greatest Hits
Matisyahu, Light
Phill Keaggy, 220
Simon and Garfunkel, Greatest Hits
Amos Lee, Mission Bell
John Mayer, Room for Squares, & Heavier Things
Filed under Uncategorized | Comment (1)2/21/2011 76 Days Old
On the 76th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Today was presidents day and I did not have to work. Thank you John Adams. I think we should thank him more. Everybody remembers George, and Abe, sometimes Thomas, but never John.
The day at home today was great. We stayed in bed and passed Maya back and forth all morning. She had a good night last night. She woke up hungry at 4:45 but there was no painful crying and writhing, just normal baby stuff. A great night turned into a great day. This afternoon Grandma Kathy came by. She had presidents day off as well. Soon after Grandma got here Maya woke up. She woke up and opened her eyes wide. We got to see her beautiful baby blues all afternoon. Maya and grandma read a book. Maya intently watched the animals on the page. Grandma swears she recognized the puppies. She stayed awake through dinner time. It was the longest I have ever seen her awake.
Grandma left early tonight, and we sat down to dinner just the three of us. It felt great. It was like we were just a normal family. No special needs, no worrying about life and death. Just a new family and diner and TV.
2/22/2011 77 Days Old
On the 77th day in the life of the most beautiful girl in the history of the world the morning began peacefully. She stayed asleep through her 5:30 feeding before I headed off to work. While I was out today Maya had a visit from Michelle. She got to have a little Maya time and help Erin for a bit. Maya was very chatty today and exploring a lot with her eyes. This afternoon Maya’s nurse came by to look at Maya. We have spent the last two weeks thinking that Maya was in congestive heart failure. When Janet listened to her lungs to day she could not hear a crackle. Her chest congestion must have been caused by her vaccinations and not her heart. These last two days have been fantastic. Maya has been awake and active for large periods of time throughout the last two days. We are so happy that our beautiful little girl is doing better. Getting to see her blue eyes searching around the room and learning more about her world is so special to us. Today the worst thing that we had to deal with was a diaper assassination. It was a bath worthy event. Lost in the crossfire were a onesie and an outfit. We will try to revive them with some oxyclean. 