After a rough night (or two), she is stable. She is on antibiotics and we are waiting on lung cultures. She is a little more alert now. Wednesday she was heavily sedated and on morphine but her respirations and heart rate are high so we knew she was in pain or stressed. Or both. Her vent settings are very high to give her as much support as possible.
Yesterday she was a bit more alert and calm, and was only sedated before her trach tie change. When she gets really upset she quits breathing and has a really hard time recovering.
Once she is pneumonia-free she will have a nissen so that the whole aspiration business will never happen again. Probably the week after the 4th of July.
I don't even know what to say except OMG. And that this is all really awful to watch, and stressful, and lonely.
59 comments:
I'm sorry to hear that sweet Ainsley has to have another surgery, but that aspirating is so, so scary. I will say a prayer for you all. Hang in there, girl.
I am so sorry about the latest turn of events... You're in my prayers. You're a very very strong woman!
You are amazing and so are your babies...I don't know how you manage it.
Sending you as much strength as I possibly can (or the Internet allows, whichever is more).
I am so sorry you are having to deal with this on top of your loss. I pray that Ainsley gets better soon and will be able to leave the hospital.
Just because my son was on morphine and had a few breathing and heart problems I wanted to share with you that morphine will increase the heart rate and lower the oxygen levels. As soon as we switched his pain medication, he did much better. He was practically 4 years old when this happened.
Your little drama queen is fighting like a prize champion. She just needs to keep on fighting.
Lots of love and prayers for your family.
Aw jeez. If only there was a way to decree that Miss A. would heal and grow quickly and dispense with all this unnecessary drama!
Lovey, I am hoping so hard that the next time my feed updater tells me you've posted, you will have news of a hugely improved, chirpy young lady. I'm so sorry you're all still on the stress-loaded down-swing of events; get better soon, Ainsley. Hugs to you, Jen.
Thinking of you and hoping for much, much better days in the future. You and your family have already been through far too much.
Delurking to say I really, really hope that she picks up soon. I don't know what else to say, you guys have been through so, so much. Thinking of you, and hoping for you.
Good Lord! I hope she is getting all of the drama out of her system now and plans to be drama free in her teenage years! So sorry to hear that you're having a rough (slight understatement, right?) week. Please know that your family is in my thoughts and prayers.
Oh, gosh, Jen. I know you have many people here with you in spirit. But I can only imagine that a very sick little baby in the middle of the night is about the loneliest thing ever. I hope so very much that you have a lot fewer of those times coming up. Get better, Miss Ainsley, and please come home. xo to you all from the internets.
Hugs to you!
Good God - I am so sorry she's still in there, and having such a hard time. I wish there was something to do or say. This is why people drop off lasagne - just to DO something, ANYTHING. Or why people say they're praying for you. Not much of a pray-er, myself, but I can't cook either, so I'll offer up the latter. PLEASE get better little girl!
I am so sorry you are having to deal with this, and that poor Ainsley is having such a hard time. Big hugs to you and magical get-better-quick fairy dust for Ainsley.
I'm so sorry to hear she is still not doing well. Your and your family are in my prayers.
I don't think I've ever left a comment, but I've reading for a long time. Bless your family, I'm sending you and yours every once of health and happiness juice I have in my soul. Praying for and thinking of you all.
Oh that poor baby.. So sorry! It must have been terrifying to get that call in the middle of the night. My thought are with you guys, praying that sweet Ainsley turns a corner towards better health. Take care.
I can only imagine how lonely you are and helpless you must feel with your little drama queen so sick. I hope with all my heart that she turns the corner quickly and is all smiles and giggles and ready to go home as soon as possible. Thinking of you all....
I know I don't "know" you at all, but I think of you and your sweet family often, and am considering starting to pray just so I can pray for you guys. I can't imagine how you feel, but I try.
Ainsley is one determined little girl, isn't she? I hope there's nothing else she needs to fight off and that she stops worrying her mama and daddy.
I'm sure you're tired and feel alone, but don't forget that you (and she and your whole family) have all of the internet behind you. You're not alone.
I'm praying for your family and healing for your baby.
Every time I check your blog, I hope to see news that Ainsley is coming home. I'm so sorry that she is continuing to struggle. But she is certainly a fighter isn't she!??I sincerely hope that things turn around for your whole family and very soon. You have all been fighting so hard for your family since you pursued IF so many years ago.
You are a true inspiration to anyone facing any challenges. To see that you feel lonely is heartbeaking too. While your internet supporters can't do much to help you, please know that we are all fighting for you too.
This post just brought back so many memories, especially that last line. My heart aches for you. When I was in that lonely, stressed, and sad place, I started seeing a therapist. Actually, at first, our sessions were on the phone. Six months into it all and I still see her. I am still struggling, but, man does it help! I hope you find an emotional outlet. We all love you and your beautiful girlies.
Sorry Ainsley is having a rough time. Sending you a hug.
I wish I could sit right next to you and hold your hand or give you a hug or something. I'm sending all the strength I can possibly muster but I know it isn't enough. I want so much to help you.
I've been a lurker for years and look for your blog posts daily to see whether Ainsley is improving. While I can't imagine what you are going through, I just wanted to know there is another person out there sending you my support...
and a hug.
Jen, I don't know quite what to say except that I want you to know that so many people that you don't "know" are hoping for only the best for you and your family. Wishing you (and especially Ainsley) all the best.
I normally would be cautious to post a comment like this because you never know who might be offended - but I have been following you since before Olivia was born and I am pretty sure you won't care. So...
FUCK THIS SHIT! Amen.
My internet fibers are swelling as I try to reach through them to hug you and hand you a baseball bat - you know... just to hit stuff and have an emotional and physical catharsis.
Ditto what Erin said, times 587! I hate this for you. HATE it.
Praying for you and your family every day.
praying for your sweet Ainsley and for your heart. I think about your family often.
My daughter (also a TTTS twin) has a Nissen as well, and it has been great for her, no aspiration pneumonia anymore, which is just awful, I know. We just have to "vent" a lot, but it works great! Good luck.
I'm so, so sorry. You are amazing, and so are your two girls. I can only imagine how lonely this must be for you. I'm always thinking good thoughts for your family.
Oh Jen, if I were near you I'd totally come hang out with you. I can't even imagine what ya'll are going through or how it feels. I send so many prayers your way, it just breaks my heart that it's one hurdle after another. I always thing that it's extra shitty when a person that overcame IF then has to deal with other painful things. Yours takes the cake. It's just not even fair. :o( Sending more prayers for all of you.
I am so sorry. I will be praying for you, Ainsley and your entire family.
My goodness Jen, this is just the worst. I'm so sorry. You're not alone though, there are so many people rooting for Ainsley and sending love your way!
I am amazed at your strength and the strength of your little lady. i read your blog religiously but hav never commented- but I DO think about you and your little fighter all the time and send lots of positive thoughts your way. You are a great mama and you amaze me!!
I'm so sorry you guys have to go through all this. I know it feels lonely but there are so many people praying for you. I'm sitting here in my small apartment in NYC, so far away from you and your world, but I am praying and you and your family as if you are my close friend. Try to feel some comfort in the support you have out there. Stay strong.
OMG is right.
I am sending lots of love.
Glad to hear that all of you have overcome this storm.
That's great that you have a plan (about the nissen).
Thinking of you.
Sending happy thoughts your way.
I also don't know what to say but OMG. I am sorry that all four of you are going through this. Not fair for any of you.
Thinking of you and your family all the time.
I'm so, so sorry. That sounds really hard. I don't know how you're doing this. Stay strong.
I can't say I know what you are going through but I can say that I think about you and your family all the time. I wish very hard that things would get better for you quickly - you guys are overdue for a break.
Oy. That really sucks! I hope the Nissen helps her turn around and start doing MUCH better so she can come home.
OMG! Poor baby! Poor Mommy! Thinking of you all.
Morphine will affect the HR and sats. Hopefully the antibiotics will kick in soon and get her going- sending you hugs.
I don't know you. I'm not pregnant, infertile or a mother. I read your blog because you are funny. I'm so sorry to hear what you're going through and hope things improve quickly. My thoughts are with you.
Nothing but hugs for you, Jen.
In all the terrible things tiny Ainsley has been through in her short life, one thing she's always going to have going for her is the unending love of a good, strong, mother who will fight for her every step of the way. I am so sorry you're going through all of this. I send you nothing but love and hugs and good thoughts.
Oh my word. I am SO terribly sorry that you guys have been going through so much. Ainsley is one feisty little girl and she is amazing!
I actually had a Nissen Fundoplication myself 3 years ago. I feel like a new person...not more reflux, no more TUMS and meds. It's awesome. She will do great and will feel so much better!
Much love to you all <3
You are so brave to share your story! You are so right, it is unbelievable and sounds like a bad dream! I look forward to hearing and reading your posts. God bless your family!
OMG. Ditto what Erin said.
Thinking of you...
It is so awful but I am so glad that Ainsley is stable and keeps fighting in the face of all of these obstacles. I am hoping as hard as I can that soon all of this will be behind you and you can all start healing together.
I check in for updates all the time, have been reading (quietly) for a long time and I hate seeing such sad posts. I am so sorry for you guys, sounds like you have quite a fighter on your hands and even though it's been a long time in NICU this phase will pass and you can blog about frustrating potty training, or she cussed or whatever comes next haha. Hang in there I can't imagine what you are going through, wish I lived closer so I could cook your meals or clean your house or whatever to help.
You have a strength that is amazing. I pray she is healed quickly.
Little Miss Ainsley is one tough baybee. I thought about you when I spent a week in a heart unit ICU with my father who we were told was brain dead from lack of oxygen from a heart block. He is a fighter and came back to us after three surgeries. Just a week of that ICU made me a mad hatter. Constantly making sure he is getting what he needed, and the minute by minute changes on what would be next.
I really cannot imagine what it is like to have Ainsley in a NICU for this long and all she has been through and what will come. I would have been in the psych ward by now. She must get her strength from her Mom.
Not sure if you are religious or not. But prayer sure helped me with my Dad.
I'm sorry these horrible things are happening to you. You and I had the exact same due date for our twins and I so enjoyed following your pregnancy, but then all this unbelievable, unbearably sad stuff happened and now my heart just aches for you. My husband and my mom always ask me about you, as if I know you. I wish I did, because you seem like a really neat person. I admire your strength, but I don't know how you do it.
I only say this to myself when there's nothing else I can say to make me feel better: "Someone, somewhere thinks I can handle this shit. So I'm going to handle the shit out of it." It's absurd, but I like to think I get the shaft sometimes because I have superhuman coping skills. And ice cream. And brownies. Much love to you and your family. And ice cream. And brownies.
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