Maya’s Story

Maya was born at 7:11am on December the 7th, 2010. She was 4 lbs. 8.6 oz and 16 inches long.  8 hours later she was diagnosed with Trisomy 18, a terminal genetic disorder.  We are blessed that we get to spend even this short time with her. She is the most beautiful thing we have ever seen.  Everyday we are impressed by her strength, and amazed by her spirit.

Maya Winnifred 12/16

1/5/2011 29 days old

Maya’s playlist for today

• Paul Simon, Graceland
• Marc Cohn, Marc Cohn
• Eagles, Hell Freezes Over
• The Fray, How to Save a Life

On the 29th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Grandma Patti and Maya were nestled on the couch. We opened the shades before dawn and watched as the day brightened. The mornings are the best. Before the worries of the day set in, there is nothing but a peace in our home. Her uncle David helped with her morning feeding as I drank my coffee. That was our morning. At 10:30 Maya had an apnea that lasted for 3 minutes. I carried her into our room to wake Erin up. We held her and she slowly came back to us. That was her only episode today.

We had several visitors today. It seems people are lining up to view the most beautiful girl in the world. She had an assessment with Infants and Toddlers, her physical therapists. She apparently has the range of motion of a gymnast. She also was held by Erin’s friend Rhonda, and my friend Elisabeth during their visits.

Other achievements for the day include several messy diapers, some excellent napping, and quick wardrobe change. She also set a record for her longest cry before her 7:30 feeding.  Maya’s finger met her mouth today for the first time. I asked her how she felt and she replied “wet yet comforted at the same time”

Tonight we are relaxing with her. It is a full house tonight. Travis, Krissie, and grandma Kathy are all here listening to The Fray, and sipping on hot tea. It is amazing that when with Maya the rest of world disappears.  Every night  she brings together a group of family and friends who need nothing more than to be near her, to hold her, and kiss her head. It is her gift. When holding her she lifts us up.

1/6/2011 30 Days Old

Maya’s Playlist for the day

Ray Charles, The Definitive Collection

On the 30th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Grandma Patti and Maya were nestled on the couch. I took over for Grandma Patti at 6:30. Maya and I spent the morning together by ourselves. After a short time Maya insisted that we watch Sports Center. After Sports Center we surfed around you tube. At 9:30 Erin woke up and we held Maya together. A peaceful morning turned into a peaceful day. There were no apneas today, just a bath for Maya and some visitors.

Michelle came by to hold Maya and help with her bath. I think Michelle needs to see a Dr. and have her hand examined. It looks like there is a video camera sprouting from her palm. It might be serious. Our thoughts and prayers are with her. Later Joel and Kate from Carousel stopped by. At about 3:30 we were alone with our beautiful little girl. Erin napped as I watched Maya. Until dinner. Grandpa Greg and (not married to Grandpa Greg) Grandma Kathy is here tonight. Grandpa Bob and Grandma Chris will be by later. They came bearing gifts of a little bling for our little angel.  She is sporting an new silver and pink bracelet made by a beautiful ballerina named Marissa.

I began writing too soon. At 7:00 Maya had an apnea that lasted for 5 minutes. She stoped breathing for the first minute and then had intermittent breathes for another four minutes before returning to breathing normally. There was no struggle she just left us for 5 minutes and then returned to us.  Every day is precious and every day is fragile. It is time I put down this computer and get back to the most beautiful girl in the world.

1/7/2011 1 Month Birthday

Maya’s Playlist

Phil Keaggy, Beyond Nature

She also heard a cover of Wonderwall by her daddy

On the 31st day in the life of the most beautiful girl in the history of the world the morning began peacefully. David and Maya were nestled on the couch. She had made David watch sports center for 4 hours. I guess she likes her sports. David was nice to go along for so long. As is usual in the morning I pulled the shades opened before dawn. She had a good night with uncle David. She had an apnea at 11:00 before Erin and I had gone to sleep. I was relieved that she slept so soundly. We took our coffee on the couch. Cuddled up and relaxed.

She was awake a lot today. I spent most of the morning looking into my eyes. They are turning more blue by the minute. She has my eyes nestled into Erin’s beautiful face. One moment staring into these eyes and all the stress and worries fade away. Big beautiful blue eyes that take everything in and Take nothing for granted. We could all learn from her, to see our world with new eyes. Eyes of an angel learning all she can about this world.

Later on her eyes got to gaze upon a face she hadn’t seen in almost a month. Two of  the amazing nurses from the hospital came by to see our angel baby.  Angie and Tricia came by and held her. We attempted to thank them for all of the wonderful things that they have done for our family, but there is no way to do so. No words can be found to describe how important they (and all of the nurses) are to us and to Maya. The days in the hospital were a difficult time for us, and they lifted us up through the whole thing. The positive impact on Maya’s life will remain close to our hearts forever.

Tonight It is a full house. Aunt Krissie , Uncle Travis, Grandpa Bob, and Grandma Chris are all here. We also have a visitor from afar. Great Aunt Nina is here from Onida, South Dakota. Nina is holding her and we are all gathered in the living room sharing laughs. It’s time to put the computer down now. We can’t afford to miss a moment.  We have had a months worth of wonderful moments. It is a big day for us. And we need to rest. Tomorrow we celebrate.

1/8/2011 32 Days Old

On the 32th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya was not in her usual spot in the arms of a family member on the couch, she was in her bed next to mom in our room. We got her sat monitor yesterday and she spent the early hours of the morning sleeping next to us. She had one apnea over night that lasted for a short time. It was the first time since her first night home that she slept with us in our room. We were proud parents. Not proud of her though we always are, but proud of ourselves for taking care of her by ourselves for at least a short time over night.

Today was a celebration day. We had too many people over to list and ate cake to celebrate Maya’s one month birthday. The house was as full as it can be. We caught up, and talked about how much bigger Maya is than when she first came home. She thought the cake was delicious, but made some comment about it going straight to her hips.

In the evening KC, Michelle and family stayed over so that I could nap. Maya’s cousins watched Charlie and the Chocolate Factory, and Alladin. Esther held Maya for most of the time.

It was a good day in the Allen house.

1/9/2011 33 Days Old

On the 33rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya was not in her usual spot in the arms of a family member on the couch, she was in her bed next to mom in our room. We slept in with our little girl. We missed the sunrise, but that is OK. Grandpa Bob Grandma Chris had stayed the night and taken care of Maya until about 5:00 when mom and dad took over. We were able to sleep in our room with her in her bed next to us. When we got up at about 9 We put some Ben Harper on the stereo. It is amazing how well she likes music. Her eyes come alive and we can tell that she is really listening. We listened as Grandpa Bob fixed breakfast. At noon Grandma Chris held her while watching the chiefs pretend to play football. It was an exercise in self control. Specifically volume control. She did well. She only had to apply “ear muffs” once or twice.

After the chiefs finished their season we relaxed, and then relaxed some more. Later we relaxed some more. It was an easy day.

In the evening Travis and Krissie came over and fixed some excellent steak fajitas. At 5:40 while we were preparing dinner Maya had an apnea. It lasted for 4 Minutes. After she recovered I held her on the couch so she could rest. The apneas have been coming most days now. Each one is harder to see, but we will hold her and comfort her through each and every spell.

1/10/2011 34 days old

On the 34th day in the life of the most beautiful girl in the history of the world the morning began peacefully. It had snowed over night and continued to snow throughout the day. When I woke up I went to pick Maya up from her bed. She was awake. Awake in her bed looking around the room. She was on her own and doing fine just observing the room. Her eyes were as wide as i have ever seen. Most of the time when she wakes up her eye lids stay relaxed. This morning they opened wide enough to add a few wrinkles to her forehead. Little wrinkles that just have to be kissed causing her to either blink her eyes or look up further to see who was pecking her on the forehead.

We moved into the living room and opened up the shades as we do every morning and looked at all the snow. The snow was several inches deep and still piling up. Me and Maya stood their and looked out the window. Actually Maya didn’t stand. Thats not really her thing.

Maya has become quite a strong and confident little girl. Last night, much to the dismay of grandma, she only wanted to be left in her bed. Every time grandma would pick her up she would squirm. When she was laid down she went right to sleep. She likes to comfort herself. All she needs is one hand out to reach up to her face and she is good. She has taken to sucking on her nuckle, or placing her hand against her cheek and drifting off to sleep.

In the evening Bonnie came by to bring us an excellent dinner. We enjoyed it tonight and Maya will enjoy it in a few days. Kathy is here tonight and is holding Maya on the couch as I write. The snow is still piling up. We are nice and warm inside watching tv.

1/11/2011 35 Days old

On the 35th day in the life of the most beautiful girl in the history of the world the morning began peacefully. I brought Maya out from our bedroom to the living room and opened up the shades. She had an apnea at 4:30 and Erin had held her for the rest of the night. Krissie came over at 8:00 to help us through those early morning sleepy hours. We watched sports center together on the couch. She is getting quite opinionated about her sports. We discussed how long it would be before Auburn had to forfeit their championship. At about 9:00 she started getting grumpy. A wiggle progressed to a squirm which progressed to small cries which led to bigger check out my new lung capacity crying spree. I tried every thing to soothe her. Maybe her legs were bundled to tight. No that wasn’t it. Maybe she needed a diaper change. Nope still not it. Lets try a new position. Nada. By this time Erin had heard her cries and had come out to check on her. Or maybe to check on me it’s hard to say. I told her that I had tried everything and she must just be gassy. Erin sat down on the couch and held her. Maya did not make even a peep from the moment she was in her Moms arms. What I thought was gas was just a need to be close to her mommy. I didn’t mind one bit. I love seeing the two of them cuddled up. They even managed to nap a little bit together. It was one of those special moments that seem so small when written down but really is what being a parent is all about. It was a wonderful moment and one I will always remember. But as is life the magic was fleeting.

At 9:30 Maya had her second apnea of the day. We held her and comforted her the best that we could. After four minutes of strugling she regain her regular breathing pattern. After an apnea Maya goes to sleep. She needs her rest and her struggles wear her out. She slept for a while, and then woke up acting like nothing had happened. That’s kind of her pattern. It is one we have gotten way too familiar with over the last month.

In the afternoon Maya had a visit from her nurse and a occupational therapist. We learned some exersizes to help her loosen up her hands and her  hips. She responds well to the stretching. We can really see her progress with her hands. When she was born her hands were so tight she could barely open them. Now she often lifts her pointer or index finger to her mouth doing her version of a Dr. Evil impression.

Tonight Grandpa Bob and Grandma Chris came over to see Maya. Shortly after they got here Maya had her 3rd apnea of the day. It was very similar to the previous two. She has pulled out of it and is now resting in Grandma Chris’ arms. As I look over apparently Grandma Chris is resting to. I guess it is hard to be a grandparent. They seem to need to take naps too.

We had an excellent dinner delivered from South Dakota. Jan and Doug sent us some amazing Dean and Deluca. It is amazing how much little things from other people have lifted us up over the past month. These little things have had a huge impact on my family. We have gotten such an incredible response from so many people. Many of which have never been able to  meet Maya. Our community has rallied around our little baby girl and the love that they have shown us we be held in our hearts for a long time.

1/12/2011 36 Days old

On the 36th day in the life of the most beautiful girl in the history of the world the morning began peacefully. We had trusted David to take care of her overnight so that we could catch up on our sleep, and he did an excellent job. By the time I got up the sun had risen and was filing our living room. Maya had a good night with David. We ate our breakfast and relaxed on the couch. During Maya 9:00 feeding her feeding tube clogged. We tried everything to unclog it, but she needed a new tube. We talked to her nurse and decided that we would try a few new things to unclog it and if they didn’t work we would drop a new tube . We tried all our little tricks and still were unsuccessful. At the last minute we chickened out a little. We called our friend Angie to ask for advice. Her response was excellent. She was at our door in less than an hour. She was what we needed, someone to help us through. It was not her job or her responsibility, but she offered help and we accepted. It was one of those lessons that Maya tends to teach us daily. When we need help there is always some wonderful person who comes through as long as we ask for help.

We were unsuccessful this morning. Her tube had to be dropped through her mouth instead of her nose, but that was a good thing because At 6:00 Janet came by to move Maya’s tube back to her nose. We are always comforted when she is here. She is one of those people that is incredibly skilled and good at what she does. Which is way more than just medical procedures. She helps us to be better parents. She began to talk to us and before we really knew what had happened Erin had dropped Maya’s tube by herself. I could tell by the look on Erin’s face that she was proud of herself, and she should be. It was a difficult task that we have watched many nurses struggle with, but with Janet here with us Erin was able to give Maya exactly what she needed. I am proud of her too.

Our evening will be spent with Grandma Kathy watching the K-State game. We hope it is less eventful than our day.

Maya’s Playlist

Billy Joel, Greatest Hits

John Mayer, Where the Light Is Live

1/13/2011 37 Days Old

Maya’s Playlist

Ben Folds Whatever & Ever Amen

Jack Johnson Sleep Through the Static

On the 37th day in the life of the most beautiful girl in the history of the world the morning began peacefully. I peered through one blood shot eye at my daughter. She seems to like the night life. I made it until 1:00 taking care of her before waking Erin up to try and get her to sleep. But my daughter might have inherited a little bit of my hard headedness. She does what she wants. Erin was up until 3:00. I woke up at 8:00 so that Erin could get some sleep. We moved out to the living room and opened the shades. The early morning is still my favorite time with Maya. Just me and my girl.

Later on Michelle came by to take care of Maya for a while. She made some hand splints out of yarn. They are perfect. We put them on Maya’s hands while she is sleeping to stretch out her hands. That along with her stretches have really helped her to relax her grip. Maybe a little too much as last night she repeatedly tried to hook her feeding tube with her finger. She thought it was fun. We did not agree.

The day was uneventful. We held Maya on the couch and watched TV. It was a good day. She was really awake today and we are enjoying interacting with her. Her eyes are turning bluer every day, and her hair is getting long. Her face has changed so much in just a month. Today I was looking at her round face and comparing it to some pictures of her from earlier. She is growing fast. Everyday she is fitting into clothes that she could not previously. She set a record for the longest yawn today. Also the heaviest diaper. Yup we’re pretty proud. Our days are full of wonderful little moments with our little girl. We now know her every move. Her precious little stretches with both arms over her head. Her little whimper after every sneeze. Her little yawns followed by a loosing battle with her heavy eyelids. All these things are the magic that is Maya Winnifred.