#corajune

[onelittlejellybean-blog]

This kid. Poor little bean has a second G-tube site infection and a mad case of terrible reflux that's left her heaving and gagging and red after every feed. She clearly feels super crappy and has spent the day alternating between crying and fighting sleep.

Grateful for an awesome team at the Duke Special Infant Care Clinic who listens and helps troubleshoot any time we need them. It is a huge comfort to show up to an appointment and have several staff who she wasn't scheduled to see stop in just to see our girl and ask how we've been doing since her discharge. They're genuinely excited to see Cora, and take such good care of us...even this morning when she screamed and cried through most of her exams and blood draws.

Much to be thankful for, even on an icky and rough day for the peanut.

[onelittlejellybean-blog]

Wine o’clock, going on wine thirty

Y'all. Long day for the jellybean and mom. Had to go in to see her cardiologist today after she developed a cough, lowered oxygen sats, and in general has just been really tired and fussy.

After a long afternoon at the hospital getting an echo, X-rays, lab draws, an ekg, and all the regular appointment stuff, her doc thinks it's some kind of virus. So she got swabbed for cultures and we'll learn more later. Hopefully nothing too major, but even small stuff has the capability to really knock her out with her heart condition.

It's more than heartbreaking to hear Cora cry and scream through each of these procedures. One, because it's awful when she's upset/confused/hurting, and two, because it's the opposite of our normal chill and happy little baby. Not to mention the part where she hasn't really taken a pacifier or a bottle in weeks since developing thrush (thanks antibiotics), and there's almost nothing that comforts her aside from snuggles, swinging, and firm back pats. None of which can happen in this scenario.

Also, it is exhausting as a parent to go though all that with her. Not being able to make things better for her, and not being able to make things easier for the sonographers, X-ray techs, phlebotomists, nurses, etc. Even though I know it's no ones fault, it's hard to fight that southern lady mom shame that makes you think you have to apologize for everything and ignore the fact that it's hard on you, too, and that you'll be going back for more appointments next week, if not before.

Sigh.

So, Steve has Cora with him at a board meeting (🙌), and I am taking a break and getting my hair done. Because post-partum frumpy dump feelings are a real thing. Also, I'd like to raise a glass to the folks at 140 Salon for serving wine to their clients.

Cheers, folks. 🍷

[onelittlejellybean-blog]

My thinker.

[onelittlejellybean-blog]

Beyond thankful.

[onelittlejellybean-blog]

[onelittlejellybean-blog]

Reading with daddy while mama watches and has all the feels.

Also, parents and other people who have a young kiddo in your life: The Wonderful Things You Will Be by Emily Winfield Martin is just...well, wonderful.

[onelittlejellybean-blog]

Today, Cora spent nearly 5 hours being hauled all over Duke Hospital seeing her cardiologist, having a peds surgery check in for her G-tube, getting X-rays and an echo, and having blood drawn for labs. All after skipping feeds in preparation for an upper GI scan and feeling generally cranky and crappy due to an irritated G-tube button site, terrible reflux, and a fun case of thrush that's developed after being on a few antibiotics. And then mom made her go to Walgreens to pick up prescriptions and a new formula.

And still, she voted! **

Kid, you're my hero.

**Okay, she's way too young for voting, but she did join me in that task. On a related note, I also survived all of the above, along with navigating hospital parking and hauling around an almost-three-month-old who was, simply stated, not here for any of this. I am AWESOME.

[onelittlejellybean-blog]

Happy Halloween from our Wonder Woman!! This girl lives up to her costume every day💪 🎃 😍

[onelittlejellybean-blog]

Having a little morning play time with SuSu. Still not feeling 100%, but grandparents are an excellent distraction!

[onelittlejellybean-blog]

Well hello, gorgeous.

[onelittlejellybean-blog]

This little jellybean. Home with my girl and happy, though missing dad now that he's back to work. We've had an awesome few days since her homecoming--so glad to be here with just the three of us in our own space.

[onelittlejellybean-blog]

Good morning, world.

[onelittlejellybean-blog]

Surprise! Today was a great day. 💕

[onelittlejellybean-blog]

Oh hi guys. I'm adorable.

[onelittlejellybean-blog]

Oh, my heart.

[onelittlejellybean-blog]

Y'all, Cora is two months old today!

She is still a total sweetheart and at the same time is starting to show a little of her sassy side, which I adore. She is doing so well with all her PT sessions, and is--as her dad would say--getting #swole during these workouts. She's holding her head up some during tummy time, doing some supported sitting, tracking people and objects, and holding on to and tasting her play rings and other toys. She's entranced by her mobile and when gazing into the mirror. She still loves a swaddle, though she almost always kicks and/or punches her way out, even when in one of mom's pro-level (I've been coached by pros, at least...) swaddle jobs. She loves attention from all her nurses, docs, and other visitors, and they love to give it to her! She's occasionally starting to talk back to us, and has definitely found her "angry cry" voice...whooo, man, has she found it.

Babies definitely grow up too quickly; it's true.

She has recovered well from her G-tube placement, and her feed volumes have been gradually increased over the last week and a half. She's still doing some bottle feeding, though not at every feed and she's only able to take a portion by mouth even then; the rest is fed through her tube. In the last few days her bottle feed attempts have reached anywhere from 5 to 26 mLs, just to give an idea of what she's able to manage before getting overwhelmed or exhausted.

We have been gradually preparing to discharge, and were actually scheduled to bring her H-O-M-E today, but have had to push this back some while her team figures out why her oxygen saturation levels have started to dip a little more regularly. It seems like these desaturation episodes are in line with the end of her feeding sessions, and she's also been struggling more with reflux/vomiting and general GI distress and discomfort lately, which is also irritating her G-tube button site. Today her docs decided to decrease her feed volume and increase the calorie content of her formula in the hopes of resolving some of these issues while still keeping her on track for growth goals. We'll see how this goes over the next day or so, and if she is still having desaturation episodes the next step may be for her to get some blood to help bump things up.

In the meantime, Steve and I are checking all the boxes of requirements for discharge on our end. We've received infant CPR training, education on and practice giving her meds via injections and through her G-tube, and care instructions and training on her G-tube site, pump feeds, pulse oximeter, and oxygen equipment. We're meeting with members from each of her specialist care teams (PT, OT, speech, cardiology, neurology, endocrinology...the list goes on) to receive discharge information and plans and to make outpatient appointments. On Saturday, we spent the night with Cora in the family care room to practice taking care of her on our own, but with a safety net of nursing support. Her car seat base is now installed and she's passed the car seat tolerance test. Her nursery is ready and supplies are stocked and being organized at home.

So...we're ready! Or as ready as anyone can be. We just need to make sure that Cora is also ready. Close, but not quite time.

I know that having a new child at home will be exhausting and full of all sorts of learning; we have no idealistic visions of what this will be. And at the same time, I'm looking forward to being exhausted in our own home, with our own set up and actual privacy. I'm looking forward to not spending most of my day at the hospital, and not having to spend like half an hour of each day just searching for parking in that terrible garage and hauling myself and whatever I need for the day with me to Cora's bedside. I'm looking forward to not living out of my purse or backpack. I'm looking forward to having the opportunity to visit with friends and family with Cora and having more than two at a time allowed with her, including us in that number. I'm looking forward to time at home alone with Steve and Cora, and for him to be able to spend time with his daughter without having to go to the hospital after a 10 hour work day.

Discharge will be a wonderful next step, though I'm still afraid to say the H-O-M-E word much out loud. We've learned that at the ICN/TCN they refer to this step as "going to the zoo," so as to avoid jinxing things. Pretty great, and one of the many reasons that I know I will actually miss our time at Duke to some extent. We have had so much wonderful support and care, built relationships with our care team, and made friends with other parents that understand much of what our experience has been and will be. I won't lie: I would change a lot of the scary and life-threatening pieces of Cora's story if I could. And at the same time, I'm grateful for all this good that we wouldn't have otherwise encountered. And for all the perspective that I've gained in the process.

And, with all that said, we are really, really looking forward to taking Cora to the zoo.