I cannot contain my excitement.
Today is a BIG BIG DAY on the blog, folks.
Because we’ve got some BIG BIG news on the Olivia Grace front. Namely…THE TUBE IS OUT! FOR GOOD!!!!!!!!!!!!!!!!!!!!!
I’ve got the biggest, cheesiest, tear-stained grin right about now, because it’s been a looooong 8 months to get to this point. But here we are, folks. And we ain’t goin’ back anytime soon.
So first thing’s first, before diving into the full scoop + dirty details, cheers to this little Wonder Woman who DID THE DANG THING!
Now, let’s back it up for a hot sec. The most popular Q I had been getting was, of course, When is the tube coming out?? and Why is the tube still in??? Olivia had been given an NG tube to supplement her feedings, as she grew + recovered after her NICU stays. It was a slow + steady process, increasing by only 5 mL or so (one teaspoon) every so often. Seeing as a “full feed” was over 100 mL, we had a long way to go to be tube-free.
Olivia had had three swallow studies since her time in the NICU. Swallow studies are essentially a means to view swallowing in real time (via radiation, like a video X-Ray) to see what’s happening, and to find a “safe” way to eat; the issue from the start was that Liv was aspirating at some point in the swallowing process, meaning that liquid was crossing over her esophagus and into her trachea. The huge issue here was that any buildup of liquid in the lungs can lead to pneumonia, which can be fatal. Each swallow study showed progress from the previous: from aspirating every type of liquid (they test various degrees of thickness, since “thin liquids” are easier to aspirate than thicker liquids) in every position, to only in one kind of position, etc. We were at a point where she was able to “safely” eat and progress 5 mL a week via bottle in an “elevated sidelying” position, meaning feeding her tilted slightly upwards on her side. And the rest of her feed volume would be given via her NG tube, so that each feed was full volume. For example, if in a given week she was at 100 mL “total volume” per feed and was allowed to take 40 mL by mouth, her bottle would get 40 mL in it, and then the remaining 60 mL would be given through the NG tube, which went up her nostril, down her esophagus and straight into her stomach.
Sidenote: I’m trying to make this as non-technical as possible so as to not totally bore with medical details, so I apologize if anything reads confusing!
Everything seemed to be progressing well + smoothly enough; we were even given the clear by a hospital team to start progressing by 10 mL weekly instead of 5, which was like doubletiming the growth process – good news!
BUT it got to a point where the sidelying position wasn’t really working anymore. With her natural development + age, she reached a point where she’d be constantly trying to sit up and look around while eating (a totally normal milestone at that point), and one of her therapists feared that she could still be silently aspirating those feeds if she continually trying to get out of the “safe” position while eating. She halted all increases in feed volume until we could do another swallow study.
Swallow studies, especially at the hospital we were at for so long, are EXTREMELY hard to book. They book MONTHS in advance. We’d be likely looking at fall to get another one…so we went from thinking the tube would be out late June or early July, to having to be on a completely hold with everything until another study verified no more silent aspiration, in maybe September or October.
This had us infuriated at the system. I mean, Olivia is developing so well in every other area and loveloveloves life – it felt so ungodly unfair to have her whole life + development on a total standstill because a system couldn’t figure out how to fit her in for nearly half a year. There isn’t ongoing support while you wait, either. You just…wait.
Total step back.
The other issue: there isn’t enough scientific evidence of the actual effects of swallow studies on the body, especially on infants. Makes sense, given that you can’t do scientific testing with radiation on babies to gain some knowledge. But this would be her fourth swallow study in an 8-month time span…which is a lot.
We were put in a position to decide between doing that swallow study to “prove” that she had outgrown any silent aspiration and was therefore “safe” to eat in any position, increasing volume accordingly and risking any potiential side-effects from the ongoing radiation exposure. Or, assume that she had outgrown it at this point and transition to the positions + volumes that she needed, risking that IF she WAS still silently aspirating, she could develop a potentially-fatal pneumonia from it.
I mean…talk about a rock and a hard place.
So much was said and implied to us that just had us absolutely angry, and we weren’t standing for it. So, I booked an appointment for her at a new hospital, where one of my best friends works, for a final swallow study, because it felt like the lesser of two evils and could end the whole process if all was indeed well as everyone at this point predicted it would be. That was set for end-of-June.
Fast forward to two Saturdays ago. (Lovelovelove that some of you picked up on no tube in Instastories – I was trying hard to not spill the beans prematurely, in case it did have to go back in!)
She had the NG tube in…and around 4:30 pm pulled it out per usual. (J + I swear we could be on-call in a NICU at this point with how many NG tubes we’ve had to reinsert over the course of this journey). Also along this whole journey, every doctor, nurse, and therapist in the building has sworn that “she’ll tell us when she’s ready” to progress in various areas, from what size nipple she’s using, to what “milestone” she’s hitting and when. At this point, Liv was doing 80 mL each feed by bottle, 30 in the tube. She was almost there.
J + I had a bit of a lightbulb moment where we thought, I wonder how much she could/would willingly take by bottle at this point?
If she was kept in this sidelying position that was known + proven to be totally safe, she could hypothetically take whatever volume she was strong enough to do. Up to that point, no one had been willing to actually test her to SEE how much she was actually ABLE to do. And we knew that she was one strong cookie.
So, we put 110 mL in the bottle, crossed our fingers and held our breaths, knowing full well that if she showed any signs of fatigue or struggle, we would be stopping + putting the NG tube back in to finish the feed.
Sure enough…she finished the whole thing no problem.
HUH, we though. INTERESTING. If anything, she seemed HAPPY that she finally got to go to town with more (girlfriend loveloveloves to eat – no surprise there 😉 ). So, we kept the tube out, thinking maybe it was just a fluke, to test her next feed with it, too.
ALSO to note – with the NG tube in, she was always on a pretty regimented every-three-hours feeding schedule. So we haven’t been able to do any queue-based feeding, where parents wait until their child cries or indicates they’re actually hungry to feed them – we have to just turn the tube’s pump on every three hours on the dot. So, next feed time rolled around, and we offered the 110 mL bottle again. And…
…she took it all again. At this point, it was her last feed before bedtime. Previously, she had been getting a feed solely through the tube at 11 pm, while she was sleeping. So we had no real clue as to whether or not she’d wake up hungry if she did NOT have that feed.
J + I made the decision to keep the tube out for overnight then, to gather evidence as to whether or not she would wake up actually hungry during the night, and if so, at what time.
Around midnight she woke up, we offered a bottle…and she took the whole thing again.
At this point, we were stoked. Hesitant, but still stoked. It seemed like she was doing it! She was really doing it! We were on complete watch for any/all signs that she couldn’t do it and/or needed assistance, at this point we were mentally prepared to put the tube back in and not push it. But…girlfriend had it in the bag.
For the next few days, we kept up this routine. At her next therapy appointment that week (she gets therapy twice a week to make sure she’s developing fine otherwise with her motor skills, etc, from being nearly two months premature!), I clued our therapist in on what had happened. Really, I had no idea what to expect in her reaction – but she was surprisingly cool, just saying, “I knew she could do it.”
So, as anticlimactic as it was (We were expecting to have this grand announcement from doctors – the tube can come out! – with Olivia Grace ceremoniously ripping it out one last time and then promptly burning it in the backyard – ha!)…the tube is out.
We’ve had input from other speech therapists at this point, too, who don’t think that fourth swallow study is necessary – so, this week we’re confirming whether or not we are actually medically cleared to cancel that and safely assume she has, in fact, outgrown any silent aspiration from the last study back in March (which would be the reasonable assumption given the trajectory of each study to the next, as well as her growth + development up to this point in time).
If that’s the case, which would be SO great since mama does not want her baby radiated again, we’d essentially be on the up and up to just progress with feeding as any other baby would – we started spoon-feeding yesterday (!!!), and will be able to start with baby foods + puffed rice then, too.
SO. THAT’S THE STORY. That’s where we’re at. I really can’t thankyou all enough for the prayers which have STILL been said for our little family, which I know from the messages you’ve sent to me (+ us) these past few months. You really are the best community, and J + I are so blessed to have had the prayers from an entire CURowd going to heaven on our baby girl’s behalf. Will keep you posted on what results from this one final step before total clearance. And of course, there may very well be additional challenges along the road ahead – but with everything that has transpired since Olivia’s dramatic (+ traumatic) entrance into this world and God’s provisions through it all, I have no doubt we’ll get through it all together.
Lastly, I want to share the photo we took the day she was transported to a different hospital, from one NICU to the other. At this point, the most advanced children’s medical team in the world had no answers or explanations, and she was being hooked up + tested for everything under the sun and then some.
This was one of (if not the) worst days of our life. We had absolutely no idea what would happen to our baby girl. All we knew was that she had some mysterious illness that put life as everyone knew it to a total halt. I stumbled upon this picture again in my camera roll while on a flight to St. Louis last weekend, and it immediately brought tears to my eyes. Knowing Liv as we do now, it’s even harder to see pictures from the beginning; the thought that anything could’ve gone one degree differently to have her pudgy little legs and toothless grin not with us today makes me instantly nauseous. I wasn’t planning on sharing it -while it’s engrained in my brain forever, it didn’t feel like something I wanted to resurface in such a victorious moment.
But, something inside me said to share it.
Because I think it’s an important testament to the faithfulness of God, and it’s worth sharing in case any of you are going through anything really impossibly hard right now. In those moments, I know firsthand how freaking HARD it is to have faith. To trust that there is another side. To believe that it gets better. We sit and we think, Why me, God? Why us? Why?
If I had a dime for every prayer that I said that was some semblance of “take this cup away from us if it be Your Will,” or “give her cup to me instead,” we’d be en route to a vacation somewhere very nice right about now.
But sometimes, God’s plan is bigger than us.
To this day, I don’t know the exact reason why our story was as it was. I have guesses, but I’ll never really know – until we see God face-to-face one day and He can clue us in Himself. 😉
I do know that through it, I’ve had the gift of seeing the strongest, fiestiest, cutest, absolute BEST little nugget defy the odds and be a fighter. We’ve been given the gift of really experiencing that unconditional love firsthand, coupled with an insane sense of gratitude, knowing without a shadow of a doubt that we would die AND kill for her.
I’ve learned a strength in me that I never knew existed, I’ve learned confidence as a mom that I never thought would exist, and I’ve learned love that I never knew COULD exist.
Looking back through it all, I wouldn’t wish our lowest moments upon anyone – but I also think I’m grateful for them, because I know somehow they fit into God’s plan for us, and I just can’t wish that away. Even if our story was just to be told on this little rosy place on the internet, to hopefully help so many of you who reached out to me in commiseration and to share your own stories of being NICU parents or experiencing traumatic births, that’s enough for us.
2,000 words later, here we are…thanks for sticking with us, if you’re still here. 😉 I’m off to grab my little Wonder Woman from her nap (she just woke up and I can hear her having a very full, animated conversation with her mobile – ha!).
God is good, all the time. And all the time…God is good.