7/18/2011 221 Days Old

On the 221st day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya had been awake twice during the night. She was in a fragile state of sleep all morning. Erin worked from home today. We call Carousel for a nurse visit. We were worried by Maya’s condition and the overnight hours did not ease our worries. Maya has been breathing really hard all day. She would wake up and try to cry. The look on her face was so heartbreaking as we watched her try to push out her biggest cry only to let out a small pitiful sigh. She would repeat this process with only a shallow breathe in between several times before she would settle down.

When Maya’s nurse got here we talked about her symptoms. Maya had a rapid heart rate and was still breathing heavy. All of the symptoms that Maya was expressing could be attributed to pulminary hypertension. All of the signs point to a increase in Maya’s hypertension. It is not clear if this is a bad stretch that Maya can bounce back from or if it is a struggle that will eventually over come her. The signs point to the later, but we have seen this strong little girl regroup and overcome many ailments.

With all of this information weighed we decided to give Maya a dose of lorazepam. Lorazepam is an anti-anxiety drug that Maya has had in her comfort kit since she was addmited to Carousel. Soon after the dose was given Maya calmed down. We thought that it would put her to sleep but it did not. Her eyes opened up and we got to see her baby blues again. She was happy. She played with her tongue and made cute noises. The decision to give her the drug was a good one. Her painful cries that would surface every few hours ceased. After a short playful time Maya fell into a deep and peaceful sleep.

This evening Grandma Kathy came by to see Maya. Maya had a better evening. She is still working hard to breathe and has a hard time relaxing, but her cries have returned to a normal change my diaper or hug me tighter variety. Maya even got to take a bath with Erin.  We will try another dose of Lorazepam before Maya goes to sleep. Maybe it will give Maya a restful night. It has been a long time since she slept through the night. We don’t know what tomorrow will bring. We do know that we will be here to help Maya in any way we can.

7/19/2011 222 Days Old

On the 222nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya slept all through the night last night. I wish that I could say the same for me. When we layed her down I tried to put her monitor on her hand. Normally it does not read acurately due to Maya’s incredible chubby hands, but last night with a new lead installed we were able to get a reading. Maya’s sats started out at about 78%, but soon dropped to 65 to 70. Her heart rate was very high between 180 and 195 beats per minute. Her monitor alarms at 65 % oxygen and 210 B.P.M. heart rate. After trying to wait it out to see if her sats would come back up I decided that Erin would not be able to sleep with the alarm sounding all night, and Maya was sleepin comfortably I decided to take the monitor up and I would just stay up with her to make sure she slept OK. I tried to sit on a yoga mat next to her bed with my hand on her chest, but I quickly realized that wasn’t going to work. I went and got our desk chair and tried to sleep once again with one hand in her bed. That was not successful either. So at about 1:00 this morning I woke Erin up and we moved Maya into the bed with us. She stayed asleep through the whole process. With Maya safely in the arms of her mother I was finally able to go to sleep shortly after 1:00.

This morning Erin got up and got ready for wotk and me and Maya moved out to the couch. Maya stayed asleep. I could tell that her breathing was still fast and her heart rate still high, but she stayed comfortably asleep. We passed our morning that way.

At 11:00 I heard a noise coming from where Maya had been nestled in her boppy and looked over to see two beautiful blue eyes looking up at me from just above an open mouth with tongue protruding. Maya was awake. She was awake and happy and making happy baby noises while playing with her tongue. I was so happy to see all this that I immediately called Erin at work. It was difficult for her to leave this morning and I had given her a few updates through the morning hours. Erin got to hear beautiful Maya noises coming through the phone. She stayed awake for an hour and a half before returning to slumber during her 12:30 feeding.

Tonight Grandpa Bob and Grandma Chris came by for dinner. Although I don’t remember seeing grandma eat anything I do remember her holding Maya while the rest of us ate. Shortly after dinner Maya woke up again. Tongue out and eyes open seems to be the way she likes to introduce herself. She stayed awake for a while until her and grandpa found a sleepy spot in the recliner.

It is hard to describe how Maya is doing. On one hand there is Maya’s physical condition. Her heart is working so hard to try and get what little oxygen she can from her lungs, and her breathing is rapid. When I place my hand on her chest I can feel her heart beat fast and hard. I can see by the color of her skin and of her lips that her oxygen levels are not good. We know that she gets so tired that she sleeps for 20 hours of a day.

On the other hand. Through all of those physical problems that Maya is struggling with she finds the strength to open up her eyes interact with us. When she has been resting today she has been comfortable and when she has been awake she has been pretty good too. That was not the case yesterday and may not be the case tomorrow. So Maya had a good day. That doesn’t mean that she is better or she has recovered. It just means that all things considered she did well.

7/20/2011 223 Days Old

On the 223rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Once again Maya slept better than I did last night. She was only up once at 5:00. The lack of sleep is catching up with me so if this doesn’t make sense tune in tomorrow. I’ll straighten it out.

Maya had another nurse visit today. After being home with her and comforting her through her irritable spells today I was sure that her condition was deteriorating. I was wrong. All of the things that they look at when assessing her condition were slightly better than the last time they were out. It is not clear that her recent struggles are due to hyper tension or some thing else. She is by no means out of the woods but her condition has improved slightly. This is one of those times were understanding what is going on is beyond myself or anyones grasp. We hope that it is just a down swing and that she will bounce back. We don’t know that tomorrow will be as good as today, but it may be better. For now Maya is comfortable.

She had plenty of visitors today which I will write about tomorrow, but sleep is calling to me and I better answer.

7/22/2011 225 Days Old

On the 225th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya slept well last night. she was only up once. Today we all slept in. We needed it. I was so tired last night that I forgot to do the blog.

Maya is still struggling, but she is doing a little better than two days ago. She slept for most of the morning. For most of the day she does really well. During those times her oxygen level goes up to about 80% which is not good for a healthy baby, but Maya feels OK at there. Once or twice a day she gets really upset and loses her color. We can’t figure out whether her O2 drops causing her to get upset or her being upset drops her O2. After 10 minutes or so of comforting she calms back down and normally sleeps for a while.

This afternoon Maya had a visit from Ali. Ali hasn’t seen Maya in quite a while, and normally when someone hasn’t spent much time with Maya we can sense their tension in holding her. This was not the case with Ali. She was comfortable holding her and Maya was comfortable to fall asleep in her arms. After Ali’s visit Maya had a visit with her nurse. There were no changes in her condition.

Tonight we loaded Maya up in the car to go to Krissie and Travis’s house. Today was there first day in the house, and we were helping them pick paint colors and move a few things. Maya hung out over there until about 9:00 when we loaded her up and came home. She is laying across Erin’s shoulder now. I think we can all agree that sleep will be good tonight.

Because I forgot to blog last night we are going to do a special saturday picture post. Tune in to see our beautiful girl.

7/23/2011 226 Days Old

On the 226th day in the life of the most beautiful girl in the history of the world…as promised, photos of the most beautiful girl.

Sleeping like a big girl on the sofa.

My daddy does rock... me to sleep.

We forgot to load a 7 month onesie pic...oops :)

Dorothy’s got nothing on Maya. We love the little red slippers.

7/24/2011 227 Days Old

On the 227th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Last night Maya actually slept for a bit. It was a welcome change from the night before. Today I had to spend most of my time in the garage replacing a radiator. I did get to spend my morning with my little girl. Erin made breakfast and we took turns holding Maya on the couch. At about 11:30 I headed to the garage.

In the late afternoon Grandma Patti and Grandpa Greg came by to see Maya. Grandma had been out of town for a while and I think she was in Maya withdrawl. Maya got to spend some time in both grandparents arms as she slept.

As for the rest of the day I don’t really know what happened. I think that Maya slept quite a bit. Right now Maya is on Erin’s lap and receiving a back pat. She has been pretty tired tonight, and a little cranky. We are hoping for a restful night for her and for us. It is never good to start your week on few hours of sleep, but she is worth it.

7/25/2011 228 Days Old

On the 228th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin worked from home today, and Me and Maya hung out on the couch. Maya was very tired. She did not wake up at all until around 11:00. She then promptly  went back to sleep. This morning Maya was so tired that we got a bit scared. She just could not seem to wake up. We moved her several times, and she would grunt a little, squirm and then fall right back to sleep. We passed our day this way on the couch.

This afternoon Maya got a visit from her nurse. Her vitals were all about the same as last week, but her breathe sounds were a bit diminished when the stethascope was used. She was also having retractions, which are signs of difficulty breathing. Judging by her color her oxygen numbers were low all day, and probably most of last night. Maya’s nurse decided that she still needed to be on an elevated observation schedule and will return twice more this week.

This evening Grandma Kathy came by to see Maya. Maya’s sleepy time gave way to a time of grousing. For most of the night Maya was in between sleeping and awake. She would grunt and sigh to let us lnow that she was uncomfortable. At about the time Grandma was leaving Maya finally woke up. We got to see her beautiful blue eyes looking up at us, and got to see her little pink tongue pop in and out of her mouth. Unfortunately for Maya tonight was bath night. Maya did a little better tonight in the tub. She wasn’t happy, but she wasn’t screaming either. She is now sleeping in Erin’s arms.

On days like today we don’t really know what to think. To most peoples eyes Maya looks OK, but we can see that she is struggling with something. We will continue to hold her and comfort her as best as we can for as long as we can.

7/26/2011 229 Days Old

On the 229th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin had to work today, and Grandma Patti came by to help out withMaya. Early this morning Maya woke up. She was awake and happy. It was great to see her eyes open and taking in her world again. She has been doing good since last night.

Last night we hooked her up to her monitor to check her sat and heart rate and she was at 92% and 125 BPM. It was the best reading we have seen in many weeks. She was sleeping really well at the time. We hoped that she would stay there all night and catch up on her rest, but at 12:00 she woke up. She was really upset and it is not clear wether her sat was low because of her crying or her crying led to a low sat. After 30 – 45 minutes she calmed down and went back to sleep. She continued her swings through the day. She was really well most of the day, but would have bad swings. She had two today.

This evening Grandpa Bob and Grandma Chris came by to eat dinner with us. Maya got some good grandma time. Maya is in Erin’s arms now and we are trying to get her to lay in her bed with out crying. As usual Maya is running the show around here, and she will go to bed when she decides to and not a second before.

7/27/2011 230 Days Old

On the 230th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya slept through the night last night. Except for her move from bed to couch she slept clear until 11:00. It is nice when she can rest peacefully but it also makes us aware of how hard she is having to work, and how tired she has been.

This morning Grandma Patti came by to help out with Maya. There wasn’t much help needed while Maya slept, but when she awoke she was very picky about how she wanted to be held. She is quite the talker now. When she is awake little noise come gurgling out of her little mouth nonstop. It is hard to tell if she is complaining or just wanting to make noise sometimes. In the afternoon Krissie dropped by to see Maya and work from our house for a while. At about 4:00 Maya went back to sleep.

This evening Grandma Kathy and Jennifer were both visiting. I had to leave the house for a bit, but I was told they took turns holding Maya and preparing for a baby shower on Friday. After I got back we gave Maya a bath. She still does not appreciate bath time. She just now drifted off to sleep in Erin’s arms.

7/29/2011 232 Days Old

On the 231st day in the life of the most beautiful girl in the history of the world the morning began peacefully, but I forgot to blog.

On the 232nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin did not have to work today and we all stayed asleep until 8:30. Maya slept well through the night last night. She was only up once at about midnight.

This morning Maya had a visit from her nurse. She has been struggling for the last few days and the nurses visit confirmed her struggle. Her heart rate was very high, and she had a temp of 101.2. We gave her some morphine and some tylenol, and that helped a lot. From then on our day got a little crazy.

We got a call this morning that someone wanted to see our house from 2:00 to 4:00. After much debate we decided to drop the dogs off at K.C. and Michelle’s and head to Grandpa Bob and Grandma Chris’ house. We made it to drop off the dogs and were half way to grandpa’s by the time we got a call from our realtor saying they were done viewing our house. We turned around and came home.

Erin had a baby shower to throw this afternoon. While she left to do that I stayed with Maya. Krissie, Lowell, and Ruth came by for a bit to visit. Grandpa Bob and Grandma Chris along with Jadin also came later to fix dinner. Maya was really struggling at this point. I got a bit scared shortly after. Maya had not had good color all day and by the look of her her O2 level had been at 80 to 85%. I could tell that she was struggling harder and her oxygen level was lower. The scary part was how tired and asleep she was. I had moved her several time and each time a heart breaking weak cry would escape past her lips, but she would be right back asleep. She just could not wake up. That combined with the noises coming from her breathe got me a bit scared. I called her nurse for an extra visit, gave her some morphine, and suctioned her throat. By the time the nurse arrived she was doing a little better. At that time her O2 was fluctuating between 75 and 80%. I think that at her morst she was probably in the low 60% for an extended period of time.

The nurse thought that her air way must have been partially obstructed and that the suctioning had helped Maya out. Even after the suctioning and morphine her O2 level was still 75 – 80 %. We decided that we would put Maya on a morphine schedule from now on. She will get the drug every day 3 times a day, and she will get adavan once per day. We also decided that we would reduce her feeds by 8 CC. Her heart is just having to hard of a time with as much liquid as she was getting. Hopefully those three things will bring comfort to Maya. As hard as it is to think of this as the end of Maya’s life even though we are not sure of that, we must aggressively treat for comfort. The thought of missing some comfort care that might ease her suffering is our biggest worry. Even if Maya is able to recover from this, and lives much longer, none of the treatments that we have decided to give her will cause her any harm. As much as we want to believe that our strong little girl who has been to the brink of congestive heart failure and came back can come back from this, we can’t allow our hope for the future to cause us to decide against a comfort measure that may ease Maya’s pain. That was the hardest sentence I have ever had to write.