A Dream For Baylee

11/29/09 update

No visit from Tracy today, she's on vacation and another nurse will visit Baylee this week.

We spent Thanksgiving at home and enjoyed the dinner Duane's parents and sister brought over for us. It didn't feel like Thanksgiving at all. More like just another week day. Duane had to work and Baylee and I were home. After Baylee's morning feeding, I sat with her on her bed and we watched the last half of the Thanksgiving Day Parade together. It was very enjoyable for both of us. I got excited to see the Dora balloon and started singing the Dora theme song hoping it would make her happy and she'd relate the two (balloon and song). She was smiling so I think she did. She liked the Sesame Street float, too. Of course, I was holding her hand up and helping her point to Big Bird, Elmo, and Cookie. I just tried to cherish the time. It was hard for me to think this would be the last time we watch the parade together.

Baylee's tremors in her hands and face are more rapid. I noticed it on Wednesday, the shaking was much faster. It's burning a lot of her energy. She's really tired after several minutes of tremoring. She sleeps more in the mornings now. One of the things about Baylee is she is so inconsistent with everything. 1 day she's so tired and sleeping alot, even during the day. Then the next day she only takes her afternoon nap and is more on a regular sleeping routine. I remember Tracy saying she's consistently inconsistent. There's still Petechiae on her skin, not all over her body but spread in different areas like her stomach, legs, arms, and back. More like patches. She's tolerating the change in her formula intake well, not spitting up or burping as much.

week 20

11/22/09 update

Today Tracy found no murmur. Her bp & breathing we both low again. She's still not taking a deep breath, her lungs not fully inflating. We discussed decreasing her food intake again by another 1/3. Baylee's been burping & spitting up more lately.  We're watching her closely in case she catches pneumonia.

I also showed her these little spots on Baylee's skin. She said they might be Petechiae. Petechiae (say "pet-TEA-key-eye") are tiny, flat red or purple spots in the skin or the lining of the mouth caused by abnormal bleeding from small blood vessels that have broken close to the skin or the surface of a mucous membrane.

Her staring has been so inconsistent. I was keeping track but there was no pattern at all.

We're staying home for Thanksgiving this year. Duane's parents & sister are bringing over dinner for us.

week 19

11/15/09 update

I dont have much to update this week. Baylee's been about the same. Her bp is still down and her breathing is slow, about 18 breaths/min. 

Some things I've noticed this week are the veins in her eyelids and hands are more prominent, her fingernails are really yellow and her scaley/flakey skin is worse. I'm seeing more flaking in areas that were not flaking at all, like knee caps, elbows and the tops of her hands & feet (another side effect.) She hasn't been crying as much this past week either, which is good. Sleep is still going well.

Tuesday night Duane had her giggling alot. He was ripping paper, which she has always found hilarious. Even when opening gifts she was more interested in the paper ripping than the actual gift itself. We haven't heard her laugh that loud since I was tickling her back in September.

week 18

11/8/09 update

Tracy heard a little murmur in Baylee's heart today but only in one spot. Its not something she's heard before so she's going to keep checking that. Bay's right lung isn't fully inflating all the way at the bottom, Another thing to watch. We have a stethoscope here from Bay's 1st hospitalization.

Baylee's been crying a little bit lately. Maybe pain, maybe she just wants mama. I haven't figured it out yet. She cries when I leave her side & stops when I pick her up. Asking her what's the matter or why she's crying just makes her cry more. It's not very consistent.

She's still staring into space every day/every other day and only for a few seconds, maybe 10-15 seconds or so. She's still sleeping well.

I read this story on another "special" parents webpage and just had to add it here. We both have days when we're full of hope & faith and feel strong. Then, there's days when it just takes one thing that breaks it all down in a second.  This week it was tucking Baylee's hair behind her ear when I was brushing it.

The Strength of an Egg
by J. Freitag

Parents of children with a terminal illness are often referred to or viewed as having strength “like a rock.” Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes! If you’ll think about it, you’ll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid. Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength. A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. “Balancing an egg” while running a household, going for doctors’ visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of medically fragile kids will pick themselves up and put themselves back together again.

 

week 17

11/1/09 update

The first thing Tracy noticed today was Baylee's skin being very mottled, more than usual. A sign of blood leaving the extremities & going more to vital organs for survival. Her skin is so thin we can see her veins in her wrists now. And she bruises easily. Her BP & pulse were down quite a bit, very low for her age. She's having diffculties with her secretions. Yesterday she started choking (silently) while laying down on her bed. Then she threw up a little bit. It really scared me. I was trying to get her upright & help her clear her mouth & throat so she could breathe.
Moving the clocks back has always been a challenge with Baylee. It takes a few days for her to get used to it. She typically gets up at a certain time, has her feeding & starts her day. So just like clockwork she woke up this morning ready to get going. Its been so nice having her sleep better at night. (she's been sleeping better for 10 days) She still doesn't sleep ALL night long but at least its not restless sleep. When she wakes up in the middle of the night she falls back to sleep quickly.
Last week I downloaded itunes onto my laptop so Bay could listen while watching the slideshows (thanx M!) I added her Mermaid and High School Musical soundtracks...all her favs. Now we're set.

week 16