I’ve been wanting to post an update, but there has been so little to say.
“How’s Eleanor?”
“Fine. The same. Great, actually. Except for that whole not-eating thing.”
The last 10 days have been the slowest yet. We were transferred back to our local hospital to… basically… wait. Just sit and wait. While she was able to swallow thick liquids at her last swallow study, she did not show any actual inclination to do so. She’d take very small amounts from the bottle, and then her epic reflux would kick in and she’d spit it all back out. She went on an NG tube, which puts the stuff straight into her stomach, but continued to have bad reflux. She got an NJ tube, which goes even farther than the stomach, putting the formula/breastmilk straight into her small intestine, with the hopes of avoiding the reflux.
It was with this NJ tube that we were sent closer to home, to give her some time to see if the reflux will improve on its own at all. As for the day-to-day, there’s very little going on. We go, we visit, we snuggle. We do a little occupational therapy for the major oral aversion she’s developed. We do a little physical therapy, since she spends so much of the day in the bassinet. I put some black & white art cards in her bed so she has something to look at. I sing songs and read Goodnight Moon. But mostly, we just hang out. We don’t get many updates each day, and we don’t expect them.
It’s been a week and a half of this… nothing. And, sadly, we have no reason to believe the reflux is improving. Despite the fact that all of her feeds actually bypass her stomach, she still manages to gag and spit up at least once or twice a day.
So, this part may soon come to an end. We will be heading back downtown soon, talking with GI about surgical options like a feeding tube and a tightening of the stomach around itself to prevent reflux. Not exactly the kind of excitement I was hoping for to kick us out of these doldrums. But, on the positive side, at least it’s action, and it should be action that will ultimately get her home.
One of these days.
BLAH.
Wish she were home now.
LauraC recently posted..This would have been good to know in advance
Tears in my eyes for you and your family Liz. Sending lots of good healing mojo in E’s direction.
Boston Mamas recently posted..Four Favorite Books about Siblings-Family
Liz– Just wanted to drop a note to say that I’m reading your blog, and keeping you, your precious baby girl, and your entire awesome family in my thoughts and prayers
–HY
Ugh…I am sorry that surgery seems to be on the horizon. But, just keep thinking how nice it is going to be to have that little cutie at home where she belongs.
Erin S recently posted..No Promises
I’m sorry that E is still having trouble with reflux and that surgery may be in her future. I hope that she is able to get home soon. Thinking of you all.
Steph recently posted..Prayer Request
I am sorry to hear this. I am hoping and praying to good news. Eleanor is very lucky to be part of such great and strong family.
I just don’t know how you’re doing it. Surgery sounds so scary, but as you say, it’s action. Hoping she makes it home soon.
High Heeled Mama recently posted..The Post Where I Complain About Complaining
Oh, beautiful Eleanor- I wish you were having an easier time of it. I’m a lapsed Catholic, but for lovely Ellie, I am busting out all the prayers I learned in Catholic school.
jungletwins recently posted..The Impossible Dream of a Happy Medium
Best wishes for resolution for this. XOXO.
Karianna recently posted..Providence Granola Project
thinking of you all and saying lots of prayers for little Ellie.
Nicole recently posted..8 Months old for Matteo
Thinking of you guys. I hope you get some answers soon.
Amy recently posted..Way Back When-esday-Opening Day
My heart is aching for you. I know that feeling so helpless has to be eating you up inside. I am keeping you all in my thoughts and prayers. Praying that sweet Eleanor is able to keep her food down and able to go home to grow and flourish with her loving family where she belongs *hugs*
Marnie recently posted..future plans
Just another stranger on the internet who is following your story and touched by your writing. We’re all rooting for you and your family; soon it will be a better day.
Ugh, so sorry to hear that there seems to be no improvement. I hope you get some answers soon.
Sigh. I wish things were better. Thinking of you and Eleanor.
I don’t know what to write…I’m so sorry that little Ellie isn’t improving. I can’t imagine how ‘stuck’ you must be feeling right now. I really hope there is some more action soon so you can get your precious girl HOME, where she belongs.
Keeping you all in my thoughts.
Laura recently posted..Listening!
Thoughts and prayers to Eleanor and your family.
You are doing such a great job, working on what needs to be done and taking care of your family. My heart aches for all of you, and I hope Ellie will have a successful surgery (or whatever option) to get her home soon.
Blah.
Is it a nissan fundoplication or something to that effect? We had that thrown out as a possible option for reflux yesterday morning depending on continued weight curve. It sounds like it has a reasonable success rate on the reflux side of things, but I really haven’t even started to read anything. They did say the surgeon typically combines it with a g-tube or similar…
WIley recently posted..Admit Defeat
I enjoy that we share some commonalities but this isn’t something I would want to be happy that we share. Still I promise that I am always close by, er as close as technology allows us to be, to talk and whatever. This is the hardest part where you are at. I know it was for us. I have to say that you appear to be much more gracious and patient during this waiting time. It must be the goddess in you.
love you!
PS: I’ll dm you my cell so you have another way to get at me if you need.
laura recently posted..in celebration of gender confusion
I think about Ellie each and every day. You’re a trooper, and thank you for sharing the hard stuff too. I think we NICU parents often feel alone in the watch and wait and hope and cry treadmill.
Hugs to Daniel and Rebecca too.
Sadia recently posted..Overheard 79
Hi. I’m so sorry you are going through this, and wishing you all the best. Some possible resources for you:
If/when you go the g-tube route, and if/when you might be ready to connect with other parents about their experiences, I recommend a few things:
There’s an online e-magazine for parents of kids with special medical needs, and it has an excellent write up about g-tubes, etc. There’s an entire section on GI issues, for example there’s an article called “10 Questions Every Parent Needs to Ask before Fundoplication Surgery”
Anyhow, I highly recommend reading some of those, here’s the website:
http://www.complexchild.com/gi.html
Then on Facebook there are two pages that might interest you, (I’m sure there are more as well!)One is called: Feeding Tube Awareness
The other is: Blenderized Food For Tubies
I don’t mean to be pushy with these suggestions, but I do hope they can provide some support and information if you are looking for it…
Best,
Ayala
i’m sorry for what you and your family have been through. i know you’re strong lady. my prayers will always be you all. Ivy@Malaysia
In googling power pumping while sitting at the lovely medela myself this afternoon I stumbled across your blog. I love it, I think I have read most all of your posts in the time I have spent at that pump today. Its nice to hear honesty when it comes to mothering and I just love your willingness to be open. Will be praying for sweet Ellie and reading your blog often