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Writing from the hospital still, but guess what? It’s our last day here! Today is discharge day and this mama is feeling reeeeal pumped about that. I was hoping with all my might that we’d get out of here before Christmas Eve, and I think it’s actually gonna happen. Huzzah!
I wanted to share another quick update on Miss Charlotte Rose ‘s Congenital disorder of Glycosylation since so much went down this week. I also wanted to share these adorrrrrable pics of her that were taken by the incredible Tana Photography in Boise while we were there for Thanksgiving. I can’t even handle how cute Char looks in all of these pics! (and how bout’ that little tweed dress she has on eh? I die. It’s a Kate Spade number and is on sale for 58% off, making it under $50. And her little furry cardigan and cute flats are both under $20!)
Today’s Charlie-babeCongenital disorder of Glycosylation update shall come in the form of a list, and that list shall be entitled:
Things I Learned in the Past Week at the Hospital with Charlie-Girl
- I learned the word ‘Tubie’. ‘Tubie’ is a term of endearment for the precious angels on earth who are fed through any kind of feeding tube. Our Charlie baby officially joined those tender ranks this week (you can read more about why we decided to move forward with a feeding tube HERE). She had her G-tube placement surgery yesterday morning and according to the surgeon, everything went exactly as planned. Hoooooray! God is good! She has been sleepy and a bit fussy post-op (understandable), but feedings via her new tummy accessory have been going smoothly and as I mentioned before, we will be heading home from the hospital later this afternoon with the cutest little ‘Tubie’ in all the land. 🙂
- In case you were wondering: we will still be feeding Charlie-babe orally as well. Our approach will be to always offer her food orally first, and then simply supplement her nutrition daily with the tube feeds. That way, we’ll maintain her oral feeding ability while ensuring that she gets the adequate nutrition she needs, regardless of what her appetite is like on any given day (cuz historically her desire to eat has been extremely variable – some days she’ll chow down, other days she wants nothing to do with it). (<— that was the longest sentence ever)
- I learned that NG-tubes are zee worrrrrst. In our case, at least. The original plan for Charlotte’s tube feeding situation was to try things with the NG-tube for a couple months and then only go to the surgically placed G-tube if she wasn’t tolerating the NG-tube well. Welllll, 2 months turned into 2 days, cuz she haaaaaaated that thing. Poor baby kept rubbing her nose and face where the tape and tube were, was super irritable and fussy, and literally ripped it completely out of her nose three separate times in less than 48 hours. Well that was enough for me. We threw a miniature, tactful fit and got her fast-tracked for the G-tube. And so far, that has seemed like the best decision we could have made.
- I learned that G-tubes are zee besssssssst. And you all told me that! We got lots of DM’s and messages about how much better the G-tube would be over the NG-tube, and boy has that been the truth. After less than 24-hours of her having it, we’ve already loved this setup so much more than the NG situation. Praise the Lord for modern medicine and all you intelligent humans who reassured me that the G-tube benefits would far outweigh any potential surgery risks. G-tubes for the win! Char also has the Mic-key button, so it literally just looks like a little button on her baby belly that we pop open to insert the feeding tube and close any time we’re not feeding her. So crazy. And so amazing.
- I learned that there is soooo much to know about these feeding tubes – and everything that goes along with them! I’m sure we’ll get the hang of it, but right now we’re feeling a teensy bit overwhelmed with all there is to know and learn. Drinking from a fire hose over here! There’s all of her feeding equipment to learn about and become comfortable with, and then all of the general care details. Ok it’s not rocket science or anything (haha) but just a lot of new ish to navigate. If I have any G-tube mamas reading this who have discovered great resources or best practices, I’d love for you to share! I have a feeling that you pick up lots of helpful tips and tricks after doing this for awhile, so I’d love to learn from a veteran Tubie mommy. 🙂
- I learned that ‘G-tube fashion’ is a thing. Oh heck yes it is! I looked on Etsy and you guys – there are like pages and pages of G-tube specific thangs: little pads to put around it in every kind of pattern variety you could imagine, G-tube backpacks, G-tube onesies (I die over this one) and jammies and tops (like how cute is this one?) – I could go on and on. Let the shopping begin! (Chase is like ‘oh crap’)
- I re-learned that YOU have to be your child’s voice and number one health advocate. This is probably the most poignant lesson I’ve learned over the course of Charlotte’s life. Doctors are wonderful and knowledgeable and I’ve never doubted whether or not they mean well, BUT: they are not infallible, they are not all-knowing, they can have conflicting opinions and nebulous assessments, and most importantly, they do not know your child they way that you know your child. SO, you have to speak up. You have to be shameless. You have to ask all your questions at the risk of annoying the bejeezus out of your health care providers and you have to ask for clarification as often as needed. You have to have the courage to push back when your gut is telling you to do so. Luckily I skew toward the ’embarrassingly shameless’ end of the spectrum – which mortifies Chase at times – but it’s honestly come in handy in the case of advocating for our baby girl. No one will care about your child quite as much as you do, so let that mama bear roar when needed!
- I have also re-learned that nurses and doctors are some of the most selfless, wonderful, and incredible people in all the land. Don’t let my comment above fool you – I cannot even begin to express the gratitude and admiration I feel for doctors and nurses and really for all health care professionals. The doctors we see for Charlotte’s Congenital disorder of Glycosylation work under an insane amount of pressure and do their best to accommodate to what is probably completely unreasonable expectations (from parents like me, for example, who are just desperate to help their child). And these nurses here at our local hospital – don’t even get me started. I have never witnessed a harder working, more selfless group of humans in all of my life. It genuinely blows my mind. We have grown super close to several of the nurses here at our local hospital, and the gratitude I feel for them is beyond what I can articulate. Having a sick child can be distressing, emotional, and stressful beyond belief — and having wonderful nurses, particularly in those moments, makes all the difference in the world. For any of my readers/followers who are nurses or health care professionals: THANK YOU! Thank you so, so much for what you do.
So there it is. We’re headed home now and hopefully life will go back to normal ASAP.
You guys – it’s Christmas Eve tomorrow! And then Christmas Day!
MERRY CHRISTMAS EVE EVE!
Thank you thank you thank you for caring about our baby girl.