Ainsley went back on Oxygen on the 21st, Vapotherm on the 23rd, and the ventilator on Thursday night, the 24th.
It was a constant struggle to breathe for her, and she wasn't even breathing properly on the vent. SO...she went to surgery on Friday, the 25th, to be intubated with a larger tube. It seems to have helped. That, and they found some nasty infection in her lungs that is now being treated.
The cultures are still growing, but we think she is aspirating her reflux. Which isn't really all that shocking and while a lung infection is a really big fucking deal for a preemie, at least we know now why her lungs are getting so much worse instead of so much better.
Today she has a GI consult. They are going to try to decide for sure if she is aspirating reflux, and if she is she will have ANOTHER surgical procedure called a nissen to help prevent reflux altogether and at that time she will have a g-tube placed.
They have her sedated, because she's an Old Hag in NICU terms and knows that the vent shouldn't be there and it stresses her out. Sometimes? She starts gagging on the tube then refuses to breathe and turns blue.
This kid cannot catch a break!
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| What? Anna Wintour swears that blue is "in" for spring. You people have no fashion sense. |
50 comments:
I've been thinking about Ainsley a lot lately and I hope she gets this taken care of quickly. Sending lots of love.
Oh Jen, I hope things start looking up after this! What a long haul you've survived.
Come on Ainsley, fix your lungs, beautiful girl!
Poor little sweetheart! Hope all improves for you soon!
Oh no... I am sure she do better soon... Hang in there!!!! {hugs}
I hope Ainsley recovers quickly and her lungs get it together to assist in the whole breathing thing. I look forward to your update about her! Hope you/hubbs/toddler are all doing well too!
I am praying for your little girl!
I discovered your blog this fall while preg w/ twins after 4 IVF cycles. You made me laugh through my nonstop nausea. I cried for us both when we delivered preemies. My boys were born on Christmas Day at 24 weeks. I was devastated for your loss and so afraid I would lose one of my own. My Ewan died on 3/1O of NEC. We have been long distance NICU neighbors these brutal last months...I want you to know that I pray for your Ainsley and my Liam with every breath and beat of my heart. Stay strong, my sister. Leila
Thinking of you guys all the time... She looks so much bigger and stronger in this picture despite her setbacks. I hope she (and you) can catch a break soon. And that she's home with her family ASAP.
Been thinking about you guys a lot. Praying for Ainsley to figure out that breathing is great--all the cool kids are doing it.
My thoughts & prayers are with y'all. Hope the doctors can get things fixed & she can be on her way home soon!
Oy. I hope the GI consult fixes her. Poor kid needs to bust outta there!
hang in there momma!
Such a Drama Queen!
I join with so many others sending hope your direction.
Wishing you a quick bounce back, plentiful chocolate, and clear aveoli.
You and Ainsley are constantly in my thoughts. You both have been through so much and I hope with all my heart this will make things easier for her.
* hugz *
Oh, little Ainsley, feel better soon...we're all rooting for you!
Poor little bit. I hope that they figure out (and fix) what is ailing her soon, so that she can be a drama queen at HOME! :) (And I think she looks very stylish in a blue paper blanket, thankyouverymuch!
Ahh, Jen. Poor Ainsley. One step forward, etc NICU-mantra etc. Am thinking of you, and crossing fingers very hard for kicking this infection into touch pronto.
Well, here's hoping she's got all the drama out of the way, and she will be the most compliant teenager ever encountered on earth.
I'm shedding some tears for the pain you must be feeling throughout this whole ordeal. I know that all you want to do is bring your baby home and hold her and love her. It just sucks.
I found your blog a few months ago and have been silently cheering for Ainsley but had to say hang in there on this latest post. I had 26 weekers a couple years ago and lost our son Ben after 5 days. Our other twin Aaron is perfect now but it breaks my heart to see someone else going through such high highs and low lows. Thanks for sharing your story and please know that you are in the thoughts of many.
Come on baby, we're pulling for you and praying for you. You can do it!
How I wish for her to get better and come home. For her, for you. Hang in there and many warm thoughts to all of you.
I don't comment often but I read your blog faithfully. You have also been in my thoughts and prayers. I've talked about you and your family to my husband. I've actually cried some tears for you. You have been through so much and you are an amazing strong women. You will get through this and Ainsley will be coming home soon! She does look bigger and stronger in the last picture. It's only a matter of time until she busts out of the hospital. Poor Nugget. Give her a kiss from me. Those cheeks are too precious.
Poor sweet little girl. I'm glad they found the problem, though, and hopefully she'll get the treatments she needs so she can come home!
She's precious and looks like she's growing by leaps and bounds!
I am pleased they have found the reason, but so sorry this is another thing for her to deal with.
Really hope this gets sorted soon.
x
Thinking of sweet Ainsley. Sending good energy her (and your) way. xo
I just caught up on your blog (I had a preemie Dec. 10th at 31w1d), so needless to say I've been busy. I am so sorry that Ainsley is having so much trouble and she can't yet go home. Just be glad that they are catching all of this while she is there and has 24 hour care, because if any of this happened at home, it may be worse. She absolutely precious and I do hope and pray that she gets well enough to join the family at home soon. If you have any preemie related questions please feel free to ask.
I haven't commented in ages, but I still check in to see how things are going. I'm so sorry that Ainsley is still struggling :( It breaks my heart to see her hooked up to all those tubes... praying for her to feel better soon... just know that you have A LOT of people pulling for you and your family. ::hugs::
You girls are on my mind all the time. Sending lots of Strength to Miss Ainsley!
Jen, I really don't know you you're able to retain your sense of humor through everything. If I were you I would just want to write,"this sucks balls" on my blog and then not write again until my sweet baby was home.
Sending prayers and love for all of you!!
Sorry Jennepper. Few things are worse than weathering the NICU. Praying for Ainsley...and you, and your hubby, and Olivia.
Love and many prayers to Ainsley and your family.
Oh, Jen... Your Ainsley is beautiful -- and she looks so big, and strong, despite the tubes... I hoep you can get to take her home soon.
I cannot imagine how things are for you all right now, but I'm sending you the best of best thoughts.
(This may sound weird coming from a lurker, but whatever, I lurk. Sue me.)
I honestly do not know where you have found the strength to continue day by day. And still manage to appear (at least on the outside) normal.
It is amazing.
Up until now all the blogs I've read about IVF have ended with roses and/or daffodils (the latter equating to the birth of your first and the complications with breastfeeding/milk protein). I honestly don't know if I could handle what you are going through.
I've seen fertility specialists, lost an ovary, had an HSG and am now preparing to start IVF in June (we're moving, thus the wait). After reading about Ainsley and Evelyn, I do not know if I'm strong enough to go through IVF and endure "what life hands you".
(And FUCK I'm still crying.)
(Double fuck that I think about myself an not a precious baby that I have yet to see.)
Please, offer some advice?
Anything.
Thinking of you. My daughter has a g-tube and a nissen - because she too aspirates (because of severe brain injury, not preemie stuff). The nissen has been amazing. I'm hoping she's not aspirating, but if she is, this will help! And g-tubes? No sweat! It won't be in forever. (in your case - in mine it will be). Hoping for quick healing.
I'm a fairly new follower to your blog. I had triplet girls at 24 weeks gestation. One of my babies didn't survive her birth, one lived 37 days in the NICU and my surviving daughter stayed in the NICU for 4 months. She was an "old hag" in there as well so I can totally relate to what you are going through. Hang in there and I wanted you to know I'm praying for your little one and I hope things start looking up for her soon. I've seen the worst of the NICU but I've also seen the best as I had two totally different experiences with my girls. I'll keep you in my thoughts and prayers. Hugs to you momma!
sweet girl. I hope she turns that corner soon. I'm thinking of you all and sending lots of good energy and e-hugs.
Thinking of you and sending hugs. So hard for you guys.
Oh, my heart broke reading about your sweet girl going back on the vent. We fought for 67 days to get off that vent, and are still trying to get off of oxygen.
Grow, Ainsley, Grow! Just get those lungs bigger and stronger!
prayers for your sweet babe.
Prayers for all of you!
Poor, sweet baby. The upshot is that they found something that needed fixing. Everything should get better!
Oh poor little nugget. And poor you! Sending lots of healing thoughts.
As a NICU survivor I think about you and your beautiful baby on a daily basis. You and Mark have been through too much, it is time for you all to catch a break! I hope Ainsley gets stronger every day and there are no more setbacks. She is beautiful and needs to be in your arms all day, not just during "handling times".
Holy chubba wubba! I love those little fat cheeks. I hate that she's had this set back, but now that they know the issue, Ainsley should have no trouble kicking ass once again. Prayers to you and your family. Team Ainsley!
I can't imagine how you're feeling but I admire your strength, thanks for keeping us all updated. Love to all of you and the best of everything positive to Ainsley. We're all rooting for you all. I hope that you and Mark and Olivia are hanging in there ok.x
I have been thinking of you and your family often, but just have never been able to put it into words,without babbling or sounding corny. I had twins in the NICU for about 2 months(2002). Your blog brings back so many memories. I have no idea how we made it though that period of time(9 years later and still a blur). Continue to count your blessings, you and your girls, you all are such an inspiration! Much love and prayers.
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