At Eleanor’s last swallow study, two weeks ago, she aspirated both thin and thick liquids, which took her off of all oral feeds until the study could be repeated. That was, as they say, NOT GOOD.
Today was the repeat test.
She swallowed thick liquids, no problem. Still a little aspiration on the thin, but did great with the thick. She had a nice, strong suck and was able to get a decent volume out of the bottle on her own.
As of today, they started her on bottle-feeds, breastmilk with a thickener. Every three hours, they’ll let her take whatever she likes by mouth, and then give her the remainder of the volume by NG tube. For her first one, she took almost half. Downright impressive when you realize she hasn’t done ANY for two weeks.
This is progress. SUCH progress, I can hardly tell you. To know that she is making these developmental strides, that even if progress isn’t lightning fast, progress is being made…
Sometimes you don’t realize the extent to which you’re holding your breath until you actually exhale a little bit, or how heavy the load on your shoulders is until it gets lifted.
There are still many steps to go. There may be steps backward, and the ones that go forward won’t be as big or as quick as I wish. She still isn’t home. We still don’t have a diagnosis for what underlying Thing is going on.
But this was a good day, and a very very welcome one. Thank you for all of the thoughts, prayers, energy, and strength that you sent our way. I was so proud of my littlest girl today.
Yeah! I’m so happy to hear about Eleanor’s progress – and very happy to hear that the weight on your shoulders has lifted. Our thoughts will continue to be with you & your family.
This was fantastic news to see tonight. I’m rooting for her and continued progress. Slow and steady gets you there!
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So happy for such great news today! Yay!
Adele was on thickened liquids for a year. It was pretty inconvenient at times, but definitely better than the alternative. Hopefully Ellie’s “thing” is similar (or better) to Adele’s situation in that she simply outgrows the issue over time.
Still sending prayers and positive vibes your way!
So glad to hear she’s taking steps forward!
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That is such great news! I can’t get over how incredibly cute she is.
WOnderful! Whatever it is, it is getting better already! I am praying for her to go home really soon.
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As I said on FB, great news! I think you need to treat yourself to a relaxing pedicure or massage, especially while you’ve got your mom there to help. Find yourself a deal on LivingSocial or similar and treat yourself to a little well-needed relaxation!
Great news! I’ve been thinking of you today.
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Yay! Hope this is just the beginning of a swift-changing tide!
So great to hear!
Fantastic news! Yay for Eleanor
You have been on my mind. Love the latest photo of her, too – she’s such a dear wee poppet.
What fantastic news! I’ll continue to send good thoughts your way.
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what a progress.. i’m happy hear this. you will always be in my prayer. ivy@malaysia
Go Ellie Go!!!!
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Yippee!!!
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I have been thinking of you all day. I read your previous post and was praying that good news would come your way. I am thrilled to hear how well the swallow test went. I hope little Ellie will be on her way home soon.
On a related note, I have to agree with all the other posters. Your posts are so eloquent, my heart breaks just reading them. I cannot imagine how hard this past month must have been on you and the whole family.
I still remember meeting you for the first time. I was barely able to get out the door and brush my teeth before the first New Beginnings class and there you were, with twins, and the first one there! Since that time, I have enjoyed reading your blog and getting to “know” you, despite not seeing you very much. You are a tremendous mom. And I cannot think of anyone more capable of handling this very shitty situation. Please know how many people are pulling for you and for Ellie.
Please let me know if there is anything I can do to help. Big hugs!
That’s amazing news, I’m so pleased to read it.
I’m hoping for lots more moments to exhale through it all, even if you don’t have all the answers just yet.
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Way to go Eleanor!!! What fantastic news, I am so stoked for you
Love the photo of your beautiful girl, too!
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Go baby!!! And go you, for taking such incredible photos of Ellie! (well of course also for other reasons, but I love seeing the pics and someday she will appreciate having these)
Great news! You will continue to be in our prayers. What a beautiful little girl…great to see her without the tube! Hopefully she’ll be home with her family soon
Great News! Yay Ellie!
“Sometimes you don’t realize the extent to which you’re holding your breath until you actually exhale a little bit, or how heavy the load on your shoulders is until it gets lifted”
Love this, simply love this. Con’t good thoughts still a-coming.
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I am so happy for you guys. You remain in my thoughts and prayers. She really is beautiful! This is such good news!
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I wish I lived closer to give you a big old hug. So proud of Ellie!
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Woot! Thrilled by your news. Ellie’s a little star
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We are all so thrilled for you and Ellie. Your thoughts on “exhaling” moved me so thoroughly. What a miracle your baby girl is. What an inspiration you are. I’m gonna go hug my kids now. Keep breathing, Liz. Best.
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That is such wonderful news! Great job, Ellie!
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Such wonderful news! Friend of MommyEsq’s here…I’ve been following your story and want to wish all of you the very best!!
FANTASTIC!!!!!!!!!!
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Awesome, oh and adorable!
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YEAH! I was so happy to hear there was some positive news about Ellie’s progress. I’ve been praying for ya over here, and even got my hubby praying too on Thursday for Ellie’s test. I was thinking about you all day on Thursday. Hope little Ellie continues to make big progress! Will continue sending prayers and good thoughts your family’s way . . . In the meantime, hang in there; you’re a great mom!
Hooray!
Hi Liz,
We were in Boston Thursday, and sitting at the T stop, waiting, we all prayed for you little Ellie. I have been praying all along, but I really felt closer to your situation being in your city.
Happy 1 month birthday little one. You are already so loved and wanted, and I can’t wait to read all of your mama’s blog posts about you growing up. God had a plan for your life, sweet girl. And this first chapter of your story has compelled many people to pray for you. Thank you Liz, for sharing your life with all of us.
Great news! And this is going to sound crazy but I think that if they don’t have a diagnosis for The Thing that it is actually a Good Thing. Many specialists remarked to me that there were “Things” kids outgrow without them being able to pinpoint what was wrong (which is why we have names for things that sweep up “miscellaneous” like “failure to thrive” and “intestial lung disorder”). She’s made huge strides in one month and I’m keeping the faith that will continue.
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May this have been the first of many many GOOD days to come. Sending strength and prayers your way. xx
So glad you had good news!
Congratulations you are doing well. I had a baby who aspirated and had apnoea every feed, was in NICU for 14 weeks.. Today she is 22 weeks pregnant with her own baby. She had to wait until she was well enough and then a fundoplication for severe aspirating reflux, lots of thickeners and medication for a year. That was 27 years ago. Your baby is gorgeous. Make sure you take care of yourself everything else can wait. The days get better. If her baby has the same problem she knows that she and I both got through her time in NICU and this gives her confidence to do the same if need be. Lots of warm thoughts. Love yourself you are doing terrific. Take each day as it comes. Karen in Australia.
YAY YAY YAY! Go Eleanor.
SO happy and relieved to hear the good news. I’m sure you’re right that the road may still be long, but these are HUGE first steps.
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