Wednesday, July 25, 2012
Thursday, March 15, 2012
Pretty Face Day 2 unedited
Today was very slow but very sweet. Penny was on her paralytics
until 1 and they didn't wear off until about 4. I did a lot of
knitting, talked to a lot of medical professionals, and stared at my
smallest daughter. She's really beautiful. Even with a swollen face, an
"elvis lip" from the intubation tube, and her new necklace. She's
beautiful. She opened her eyes just long enough for me to take a little
video. They will start weaning her sedatives more aggressively
tomorrow and the more she wakes up the more they'll be able to wean her
vent and that's what we want! We're hopeful that she'll be able to.
"I tried to say no to the drugs mommy, I promise!"
Mrs. Sam taking care of Penny
First snuggle sans sticky cheeks
The
first time all day her lips were almost touching. She's so used to that
tube that she keeps looking for it. Slightly more cute than sad.
All in a day's work unedited
Well, look who's back already! Those doc's are fast!
Go figure... She was already squirming even on the paralytic and sedatives. What a fighter, the reason why she's still with us.
And guess who got to see her before he left!
Go figure... She was already squirming even on the paralytic and sedatives. What a fighter, the reason why she's still with us.
And guess who got to see her before he left!
In Surgery unedited
They just came to get Penny a lot earlier than we thought! Our dear friend lily is her anesthesiologist and brought her a beautiful swan to watch
over her. It was a sweet moment to look at her one last time with tape on her face! I'll blog again when I hear anything!
Big Day unedited
This is not the first or the last "big day" we have had or will
have. But today it seems big. I guess that's par for the course. Of
course this is not what we were hoping to have to do for Penny, and of
course I'm not looking forward to all of the care and complications it
brings with it, but I am excited about a few things and that's what I
want to focus on.
This afternoon I will see Penny's face unobstructed! No tape, no oxygen tubing, no cpap machine, no NOTHING (I know. double negative. forgive me). I'm just beside myself excited about that. After a few days of being on paralytics (to make sure everything is healing up right before she moves around) Penny will start the process of weaning off of all of her sedation and will hopefully be more herself than she's ever been! When she was awake before she was working so hard to breath that I don't think we were really seeing the fullness of who she is. I'm excited to get to know her. We'll actually be able to pick her up whenever we want! I'm excited that once she's stable and moved up to the intermediate care floor, Lydia can go see her as often as she'd like! This may be what I'm most excited about! I can't wait to watch them see eachother again. Penny will also get to start physical therapy, occupational therapy, speech therapy and every other kind we can think of to help her catch up developmentally. I can not wait to see her little spunky self figure things out. So I'd say that's a good list of silver lining.
To answer a few questions people have been wondering about. Yes, it's temporary. As soon as her lungs have grown enough to handle breathing on their own, the trach can come out and the stoma (the hole) will be sewn up. Because she's so small and we expect it to come out within the next few years, the scare will most likely be very small. She will also have her g-tube scar, PDA ligation, and hernia scars although the hernia ones are hard to see even now...plus she better not be showing anyone those hernia scars! I'm already working on the story Penny can tell people about her days as a young ninja in training and how she had a run in with a tiger that left a few scars. It goes right along with my story to explain my stretchmarks (thanks girls).
Ok, back to the questions. She'll have to be in the hospital for a little while to determine if she'll need the home ventilator or just be able to do oxygen. If she needs the vent she'll have to be 6 kg which is around 13 lbs and that might take a while. If it's just the oxygen it'll be a much shorter time. I start back to work in less than a month so, yes, this does make childcare more difficult. More on that later.
It's time to get up to the hospital and spend some time with her. I'll be updating with pictures from my phone as the day goes on. Thank you so much for your prayers today and in the following days as we face this new piece of the road.
Specific Prayer
This afternoon I will see Penny's face unobstructed! No tape, no oxygen tubing, no cpap machine, no NOTHING (I know. double negative. forgive me). I'm just beside myself excited about that. After a few days of being on paralytics (to make sure everything is healing up right before she moves around) Penny will start the process of weaning off of all of her sedation and will hopefully be more herself than she's ever been! When she was awake before she was working so hard to breath that I don't think we were really seeing the fullness of who she is. I'm excited to get to know her. We'll actually be able to pick her up whenever we want! I'm excited that once she's stable and moved up to the intermediate care floor, Lydia can go see her as often as she'd like! This may be what I'm most excited about! I can't wait to watch them see eachother again. Penny will also get to start physical therapy, occupational therapy, speech therapy and every other kind we can think of to help her catch up developmentally. I can not wait to see her little spunky self figure things out. So I'd say that's a good list of silver lining.
To answer a few questions people have been wondering about. Yes, it's temporary. As soon as her lungs have grown enough to handle breathing on their own, the trach can come out and the stoma (the hole) will be sewn up. Because she's so small and we expect it to come out within the next few years, the scare will most likely be very small. She will also have her g-tube scar, PDA ligation, and hernia scars although the hernia ones are hard to see even now...plus she better not be showing anyone those hernia scars! I'm already working on the story Penny can tell people about her days as a young ninja in training and how she had a run in with a tiger that left a few scars. It goes right along with my story to explain my stretchmarks (thanks girls).
Ok, back to the questions. She'll have to be in the hospital for a little while to determine if she'll need the home ventilator or just be able to do oxygen. If she needs the vent she'll have to be 6 kg which is around 13 lbs and that might take a while. If it's just the oxygen it'll be a much shorter time. I start back to work in less than a month so, yes, this does make childcare more difficult. More on that later.
It's time to get up to the hospital and spend some time with her. I'll be updating with pictures from my phone as the day goes on. Thank you so much for your prayers today and in the following days as we face this new piece of the road.
Specific Prayer
- a complication free surgery
- quick recover for Penny
- peace and trust in the Lord for us
- safe travels for Jonathan (he's leaving for about 10 days)
- sweet time with Lydia when we get to be home
- patience for the wonderful people keeping her so we can be with Penny
- PRAISE PRAISE PRAISE for Jonathan Frizzell and his family. He's getting to go home today (and I don't mean with Jesus!) The surgery was successful, the shunt is working, and if it stops they believe they could fix it! His mom came to visit yesterday and just looked so joyful. A little nervous to be taking him home but so joyful and grateful for the miracle God performed. Thank you for your prayers for them and I'll update as I get any new information.
Good Moooood unedited
7-1 unedited
Life has been trucking along and all of a sudden it's the first of
July! I can't believe time is flying by so quickly. Does that mean
we're having fun?! I think that makes it official.
It's been a tense couple of days as we went back and forth with the decision about Penelope's respiratory future. We have decided that in order for her to get back to participating in life and for her to be able to develop as she should, she will be getting a tracheostomy. This will allow her to come off of the sedation she's been on for almost 3 weeks now and also will get that terribly uncomfortable tube out of her throat and my favorite part is that it will also get rid of the tape on her face!!! After she heals up from her surgery (it's scheduled for Wednesday) then she should be able to get right back to regular unsedated life...just with a fancy new necklace. With all of the physical/occupational therapy we'll have her doing she may wish she could be sedated again! I've joked that she's missed so much developmentally that just as soon as she's alert again I'm going to be right in her face singing the ABCs! I'm sure with all her spunk she'll be catching up quickly.
Our friend Jonathan Frizzell did really well in his surgery and for now the repairs are working. Please keep praying for his family though as the doctors are talking more about the family's plan for when it stops working rather than if. That's hard for a mother to hear.
Our buddy Lynnlee also could still use your prayers. They are starting to look at the possibility of a trach for her too. There are a few more things that they are trying before they go that direction but please pray for their family as they face these tough decisions too.
Specific Prayer (just to recap)
It's been a tense couple of days as we went back and forth with the decision about Penelope's respiratory future. We have decided that in order for her to get back to participating in life and for her to be able to develop as she should, she will be getting a tracheostomy. This will allow her to come off of the sedation she's been on for almost 3 weeks now and also will get that terribly uncomfortable tube out of her throat and my favorite part is that it will also get rid of the tape on her face!!! After she heals up from her surgery (it's scheduled for Wednesday) then she should be able to get right back to regular unsedated life...just with a fancy new necklace. With all of the physical/occupational therapy we'll have her doing she may wish she could be sedated again! I've joked that she's missed so much developmentally that just as soon as she's alert again I'm going to be right in her face singing the ABCs! I'm sure with all her spunk she'll be catching up quickly.
Our friend Jonathan Frizzell did really well in his surgery and for now the repairs are working. Please keep praying for his family though as the doctors are talking more about the family's plan for when it stops working rather than if. That's hard for a mother to hear.
Our buddy Lynnlee also could still use your prayers. They are starting to look at the possibility of a trach for her too. There are a few more things that they are trying before they go that direction but please pray for their family as they face these tough decisions too.
Specific Prayer (just to recap)
- Penelope's preparation for trach surgery
- Jonathan F and his family
- Lynnlee and her family
- Our plans for how to handle things when I have to go back to work in one short month
Lydia and Eliza on a walk. Both were very excited.
"It's so exhausting being so adorable" -Penny
"uh...guys? Don't look now but I think there's a lamb on my head?" -Penny
Penny and Mommy during snuggle time today
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