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| Last picture without a trach. |
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| First picture with a trach. The scratches on her cheek are from the tape that had to be removed and reapplied to hold the cannula to her face. No wonder she was completely pissed off. |
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| Rough night the following day. Laying on her left side to help open up her right lung. Part of it was sticking together. Up crying all night because she couldn't breathe even with a ventilator. |
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| The next day. A much better day. The little yellow earmuffs help keep sounds out. Ms. Ainsley "My Way or I Refuse to Breathe" Knepper likes it quiet. |
The lowdown right now is: REST AND GROW DAMMIT! Ainsley has been mostly on room air - it is great that she doesn't require additional oxygen! Her vent settings are okayish - they've been able to lower her respiratory rate, but the pressure going into her lungs (which is called PEEP if you care) is at 9, which is rather high. I guess 5 is the PEEP equivalent of room air - it's the normal pressure when you just breathe and don't act like a premature drama queen. She's been spitting up quite a bit lately so it's possible that she'll need the Nissen surgery afterall but we're waiting that out for now. The big problem she's having is morphine withdrawals and hopefully that will pass in a day or two.
I got to hold her for about 40 minutes last night, which was pretty much amazing.
Tonight is a rare Date Night, and so I'll get to talk to Mark for more than 5 minutes and maybe we will possibly discuss something other than what's for dinner, how Ainsley is, or how Olivia is. Plus there will be beer so that's also exciting.
40 comments:
You know, if you're going to act like a premature drama queen, it helps if you're pretty...
...And, damn, that baby is pretty.
Thanks for the update. I think about you often.
Glad the surgery went well. Hope Miss A grows fast now!
I agree with Julie. That baby sure does look good while being all dramatic and whatnot.
The March of Dimes team is walking for you today, Ms. Ainsley (and someone *ahem, me* could not walk because she did not write the date in her calendar immediately and has another commitment) so Sara J has been made team captain! We are all thinking of you today, and everyday!!
Rest and grow!! You're beautiful.
What a beautiful little face - glad to see she is already healing from the $%*(* tape. I cared for a lot of kids who needed trachs and g-tubes so they could use their energy to grow, and it sounds like she is doing fabulously. Room air is awesome! And I suspect her PEEP will come down once she chills out and figures out how to make the vent work for her. You are doing an AWESOME job. Seriously. I have no idea how you do it, mom-of-two-who-works-AND-has-date-nights-with-her-husband. You rock.
I'm with Ainsley. I wore earplugs the last two nights to sleep.
I'm glad she's doing better. I hope the resting and growing goes quickly. Love to all of you.
I'd be a premature drama queen too if I were her. I think she's earned it. :) And by the way...she's ROCKIN' those mini muff's...I mean, if you gotta be in the NICU, ya might as well look like a diva doin' it, right?
Take care!
So nice to see that pretty face!
And I'm with her on the tape, that stuff is a ()*&^ to remove!
Oh, HAPPY MOTHER'S DAY!
Enjoy your date night, you deserve it. And beer.
Glad to hear she's doing well. Hopefully, it just gets better from here. Big hugs to you. I cannot imagine how stressed you must be. Enjoy your date night. You have more than earned it.
Gosh, bless your heart. I love how you have such a great sense of humor. That little girl is going to be okay. Just keep working on getting her home. She's a fighter.
Thank goodness for beer, right? Glad the trach surgery went well. Hopefully now Ms. Drama Queen will grow and stop being dramatic for a little bit so she can get back off the vent and come home! Miss Olivia needs her non-talking sister to chat endlessly to :)
She is a gorgeous picture of chubby baby loveliness, despite the rough road. She is a child who will never be taken for granted. Sending all the love in the world her way, and to her awesome family. Happy Mother's Day! :)
She is beautiful. Really hoping that you all get a chance to lay off the surgeries soon and bring her home. My hat is off to all of you for getting through this. Happy Mother's Day, and I hope your next one is that much happier.
what a cutie! Hoping this helps her grow and get to come home! I want to pinch her cheeks she is soo cute!
I so hope that the hardest parts are behind you, and that there is some SUNSHINE and RAINBOWS in your family's near future.
My sister in law brought Great Lakes beer to us for her visit to VA last weekend and I thought of you. :)
Thinking happy healthy thoughts for you and your family.
Glad to hear the surgery went well & hoping Ms. Ainsley gets on board with the plan of resting and working on her growth from this point on & really hoping there isn't more drama! That's wonderful you got to hold her last night! Hoping you have an amazing date night with Mark...enjoy those beers:)
Ohmygah, the miniature booties! The cheekies! The nomable thighs! She's beyond amazing.
Oh, poor baby - what a lot to go through...but she is growing. She looks comparatively huge! She's gorgeous, though.
Hope you enjoyed date night. And the talking? It never stops. And with 2 of them? You might want your own earplugs. :)
i think of your family often. your strength amazes me.
enjoy the beer. and time with the hubs.
grow Ainsley grow!!
Thanks for the update Jen.
So glad to hear that Ms. Ainsley is getting it all together so that she can come home. What a trooper!
Enjoy your much deserved date night.
Thinking of you, Sarah
I am a neonatal NP who also happens to pediatric home health care on the side. The home ventilator/trach thing is doable. You will have nurses in your home for 24 hrs at first then down to about 16 hrs/day depending on your insurance. Everything you need should be brought to you. The ventilator is portable and about the size of a laptop. Maybe you will be off the vent by the time she is ready to come home. I wish you lots of luck. Feel free to contact me if you have questions.
Your 3 girls are all beautiful.
Cathy
Have a great date night! You totally deserve it! And I love those booties!
Thanks for the update - I check in often to see how you guys are doing.
Ainsley is positively beautiful.
Happy Mother's Day Jen!
Oh, those lungs of hers will heal and grow so much better now without that damned tube down her throat. She's so brave and you're so strong. Enjoy your beer and your mother's day. You deserve it.
I'm glad to hear she made it through surgery ok. Hate that she needs a vent, but happy to see her pretty face.
Can't wait for the day your blog happily exclaims that she's strong enough to go home.
Hope she grows fast now. I think she's rockin' the trach!
How wonderful to see Ainsley's beautiful face and in the pictures it looks like she is growing!! Keep up the good work.
Enjoy your date night and celebrate the awesome mom that you are.
Happy Mothers Day!
Jen
Happy Mother's Day Jen! Ainsley is just beautiful! Thanks for the update. May she grow, grow, grow!
What a trooper that Ainsley is! Happy Mother's day Jen, I hope Ainsley gives you the gift of resting and growing! She has a very serious look on her face in the last picture. Like, "Moooooommmmmmm, quit taking my piiiiiiiccctttuurrree." I hope that she will be coming home soon go give you many more of those precious looks!
Happy Mother's Day! Hope you had a great date night and got superbly drunk, cried your eyes out, screamed at some random stranger for something minor and then crashed into bed and got some good sleep. So much drama and trauma for this little girl and her family. I hope that by this time next year, your life will be utterly boring by comparison!
Precious little Ainsley. Who knew coming into this life could be so rough? I think about her and hope she's getting stronger every day. She's such a strong little girl. Hope you enjoyed your rare night out. You definitely deserve it!
You continue to amaze me with your strength! Have a wonderful date night; you deserve it! :)
Enjoy your date night!
And thank you, again, for sharing this journey with us.
That's what I thought when I saw those pictures. I thought, "That momma needs a beer."
And doesn't she seem big now!
Jen, Happy Mother's Day!! Ainsley is *beautiful!* I echo everyone else who has marveled at how you're doing all that you do and still have time to share with us nosy wenches. I would have thrown in the towel long ago. I hope every day from here on out just gets better and better.
xoxo
Ainsley is looking great, big and beautiful. Very glad that you got to hold her and I hope that she's able to do the resting and the growing now. Have a good night with Mark, loads of love.
Sweet, Ainsley. She is such a trooper. Hope you had a nice date night.
I found your blog through another blog I follow.... my daughter was trached at 3 wks old.
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