May 21, 2011 164 Days Old

It’s Saturday, nothing much to report. This is Aunt Krissie, Travis and I are on Maya duty again tonight, so that JJ and Erin could enjoy an Anniversary Date Night. I would post some pictures, but none of the ones I snapped tonight are really that blog worthy, nor do I know how to get them off their camera.

Tune in tomorrow and all will be back to normal.

PS, Maya is good and cute as ever.

May 22, 2011 165 Days Old

On the 165th day in the life of the most beautiful girl in the history of the world the morning began peacefully. I least I think it did. I was asleep. We all slept in a little, but Erin and Maya were already up when I woke. We stayed in bed. It was a good start to a lazy day. We did not do much. I worked in the garage and Erin made a scarf. Maya slept.

Tonight we tried to keep Maya awake so that she might sleep when we wanted her too, but in true Maya style she did what she wanted. Erin tried to prop Maya up on her knee and make Maya support her head. Maya still slept. I tried to jazzersize her little arms. Maya still slept. We tickled her feet. Maya still slept. Every once in a while she would wake up enough to grouse for a bit, but then would return to her slumbering state. I have never seen such a strong willed little girl. I think that is why she is still here.

5/23/2011 166 Days Old

On the 166th day in the life of the most beautiful girl in the history of the world the morning began peacefully. I guess it kind of depends on when the morning began though. At 2:00 AM Maya decided that she wanted to be awake. She wasn’t cranky or upset, just awake. Erin stayed up with her for a while and then woke me up. I moved over to sleep next to Maya’s bed, and reached over to hold her hand and pat her on the back. Maya was wide awake. I tried to rock her to get her to sleep, but the attempt failed. Eventually I thought that I could go to sleep even though Maya was not and if she needed me she would wake me up. I was right. Maya could wake me up. Every time my eyes would shut Maya would start talking to me. Not crying or grousing just talking. As long as she could see my open eyes she was fine, but as soon as they would close, Maya would file her protest. It went on like that until about 4:00 this morning. The alarm clock going off at 6:00 was not a welcome sound.

While I was at work Grandma Patti took care of Maya. Maya stayed asleep most of the morning. When I got home shortly after noon Maya had her head resting on grandma’s shoulder.

There was a little bit of time in between when Grandma Patti left and Erin got home. I got to spend a few hours alone with my beautiful girl. We sat on the couch and made faces at each other for most of that time, and other than some crankiness due to diaper rash, all went well.

This evening Grandma Kathy came by for her Maya time. Maya stayed awake the whole evening. It wasn’t until after 9:00 that she fell asleep. Hopefully the lack of sleep during those hours will increase the amount of sleep during the early morning hours that Maya is so fond of.

5/24/2011 167 Days Old

On the 167th day in the life of the most beautiful girl in the history of the world the morning began peacefully. I got to stay asleep as Erin took care of Maya and got ready for work. At 7:30 Maya woke up. She woke up and stayed awake all morning. We got to do lots of excersizes. At 11:00 Michelle and Luke came by to help out with Maya. I had been working with Maya on siting up. I held her arms kepping her head and shoulders up off of the boppie so that she can strengthen her tummy muscles. Soon after Michelle got here she propped Maya up and let go. Maya was able to stay sitting upright for quite a while. Eventually she got to tired to keep her balance, but for a few minutes Maya sat up.

This evening Grandpa Bob and Grandma Chris came by to eat dinner with us and get sone much needed Maya time. Grandma even helped with Maya’s bath. Maya stayed awake all evening. It was great to see her big beautiful eyes for so much of the day. But I hope that they stay closed all night. They are beautiful, but not as much at 3:00 in the morning.

5/25/2011 168 Days Old

On the 168th 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 and left for work. While I was at work Grandma Patti came by to help take care of Maya.

Today was a half day for me, and my last day of work before summer break. Today was also the day that Maya was scheduled for a visit to a cardiologist at Children’s Mercy. We loaded her up in the car and headed to the hospital shortly after one. We were able to get a lot of questions answered today. Maya had an echo-cardiogram. It was the first time since she was 4 hours old that we actually got to see what was going on in her heart.

Maya is not in congestive heart failure. She does have pulmonary hypertension. When Maya was first echoed at 4 hours old the cardiologist found 4 heart defects. Of those 4 heart defects 3 of them are not currently an issue. The only defect that is causing her trouble is the ventricle septal defect. It is allowing oxygenated blood from the right side of the heart to flow back into the left side of the heart and is increasing the pressure there. So her lungs are getting flooded with much more blood than they should, and because of that or possibly because of another congenital defect Maya’s lungs suffer from hypertension.

What does all that really mean? We don’t really know. But we do know the medical reason why Maya is still here with us and doing so well. The Dr. was not sure how Maya would progress as she ages. He still seemed to think that she has very little chance of seeing her first birthday, and he did not really speak with specificity but we got the impression that he thought Maya would probably make it to about 10 months before her heart issues would be to much for her.

We spoke of different treatment options today. It is possible to get Maya a surgery that would close her V.S.D. It would be very risky. Maya’s chances of recovery are very slim, and the surgery might not fix Maya’s hypertension. It was his recommendation not to pursue surgery, and we agree with him. The risk is too great for the small chance that Maya may get better. We can’t put Maya through so much struggle and so much time in a hospital for such a small chance.

So we are back where we have always been. Every day is precious and fragile. We will not take any day for granted, because it is one more day with the most amazingly strong willed and beautiful little girl in the world.

5/26/2011 169 Days Old

On the 169th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Today was my first day of my summer with Maya. She woke up at 6:30. We moved out to the couch and watched a movie together. She was really awake so I got to do all of her different exercises. We worked on sitting up for a while. We did some stretches, and she touched her toes. I thought that I should do all her exercises in the morning so that she could sleep through the afternoon, but she never did sleep. In the entire time I had her today from 6:30 in the morning until late this evening she only slept for about an hour. I hope she sleeps well tonight.

Michelle ,and Esther, Micah, and Luke came by to see Maya today, as did Krissie. It was good to get some help. The days can get kind of long and boring if it is just me and Maya all day. It worked out great today. I got to get some things done and Maya’s aunts and cousins got to spend some time with her.

This evening Grandma Kathy came by to watch Maya so that me and Erin could go to wine fest. Wine fest is a march of dimes fund raiser. We got to get out and socialize with some people from Erin’s work. Maya was finally able to get to sleep on grandma’s shoulder shortly after 8:00. I think today was the record for most time awake. I had plenty of time to see her blues today.

5/27/2011 170 Days Old

On the 170th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya slept through her first morning feeding and did pretty well overnight as well, but sill insisted on waking up before the alarm clock went off for Erin to get to work.  She was not awake for long though.  She fell asleep again around 8:30 and stayed asleep until 2:00.  She was making up for a sleepless day yesterday.

Maya had an eventful day today after she woke up.  She got a new feeding tube and a bath. I can’t imagine that it is a very fun to have the feeding tube put in, but I can vouch that it is not fun being the one putting it in.  Me (Erin)  and Maya had a good (read: sloppy mess) cry after all was said and done.  They have definitely gotten easier to do and hopefully less traumatic for Maya but it is hard to not pick her up and comfort her in the middle when the tube is not completely in and taped down.

After her bath and dinner Maya had some special guests.  Maya’s Great Grandma Hoisington and Great Aunts came by for a visit.  Susan, Kate, Carrie, Geneva, and Great Grandma all got to hold Maya for a little while.  They will get more opportunities to hold her again on Sunday as we are taking Maya on her first extended trip out of the house.  We are going to Grandpa Bob & Grandma Chris’ on Sunday for lunch.  We are excited and kinda of nervous too. Stay tuned to Sunday evening blog to hear how it goes. Wish us luck.

5/29/2011 172 Days Old

On the 172nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya was up at 5:30 this morning. After getting to sleep around midnight I wasn’t very ready to be up at 5:30, but as Maya wants Maya gets. I moved out to the couch with her so that Erin could sleep. I think Maya was just excited for her big day. Maya made it out to grandpa’s house today. Erin has family in from out of town, so we packed Maya up and headed south to grandpa and grandma’s house.

I’ll write more about todays events tomorrow. It is now almost 11:00 and we just got home. It is time for sleep. I hope Maya agrees.

5/30/2011 173 Days Old

On the 173rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. We all slept in a little bit this morning. We needed our rest after yesterdays busy day. Today was much more relaxed. We had a nice slow morning. Grandma Kathy came by at noon and brought us lunch.

This evening KC, Micah, and Luke came by to see Maya. We fired up the grill and had a good dinner. Maya got to spend a little time out on the deck. It was the first time we have taken her outside and she enjoyed it. It was the perfect time of day, and a good temp for her. We ate our dinner with Maya at the table.

I thought that since I didn’t have time to do so yesterday I would post some pictures from yesterdays events.

5/31/2011 174 days Old

On the 174th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya woke up early enough this morning for Erin to get some cuddle time before she left for work. It was the begining of a trend for the day. Maya was quite the cuddle bug today. She just wanted to be held, and if I didn’t hold her she threatened me with a forceful removal of her cannula. At about 10:00 Grandma Patti showed up to take over on Maya cuddling duty. Later in the afternoon Grandpa Greg would join her for a little Maya time.

Maya has really changed a lot in the last few days. She is holding up her own head more and more. I can see her looking around, and she is getting better at focusing her eyes expecially on faces. This evening Grandma Chris was holding her and I was sitting across the room when I started to talk to Maya. She could hear my voice and I saw her looking around trying to find me. After a few minutes exploring the room her eyes came to rest on my face. She looked right at me for a long time. It is little things like this that I treasure in each day. Every day that Maya keeps up her fight she learns more and more. As long as she keeps fighting we will keep helping her learn all that she can.

This evening Grandpa Bob and Grandma Chris came by and brought us dinner. They got some time to cuddle with Maya as we watched Steve Martin play the banjo on Austin City Limits. I guess Maya likes blue grass, she even seemed to tap her feet to the music. She is lying in her boppie dozing now. I hope that she has as peaceful of a night as she has had a day.