Gosh, what’s it been? A year? I guess it’s about time for an update then! I’m going to drink some caffeine, forgo the whole “sleep” thing, and attempt to actually write something.
So much has happened this past year. To sum it up, we’ve lived our lives almost like a “normal” family. I would say the highlights were sharing Neely’s 1st birthday with many of our dearest friends and family, having Neely’s g-tube removed, Neely walking and talking, Neely re-learning how to eat, adding another sweet little baby girl to our family, and (drumroll, please) ……Neely not being admitted to the hospital the entire year!!!
In fact, as of this moment, Neely has been out of the hospital for 1 year, 1 month, and 15 days! That is, as my Laney would say, “cwazy business”. I think the only time Neely set foot in a hospital this year was the day her baby sister was born.
That’s pretty surreal considering the “hospital crawl” we did during her first year of life. In my multitude of to-do lists on my trusty iPhone, I had one list titled “Goals”. One for Neely and one for me. Hers was “stay out of the hospital for 6 days”. That’s how it began. Then, “1 week”, “10 days”, “2 weeks”. “1 month” felt too hopeful, but she met that goal. Somehow we got to 6 months and I got nervous leading up to the 6 month follow-up appointment with her surgeon. When he first scheduled that 6 month follow-up, we both joked that we’d probably meet again sooner (in the hospital). I was super excited to walk in with Miss Neely for that appointment!
By the grace of God, we made it to April 29th and celebrated an entire year free of hospital visits. That is AMAZING considering the kid has a central line in her chest.
Here are some fun* facts
# of sterile dressing changes Josh and I did: >52
# of petty arguments during dressing changes: >10
# of times I mixed Neely’s TPN (IV nutrition): >360
Unusual places I mixed TPN: in a Labor & Delivery room, in the baggage claim area of the Pittsburgh airport, in a Pittsburgh hotel room
# of times we disconnected/reconnected Neely from/to her meds: >365
Unusual places to disconnect/reconnect Neely: at the gate - while waiting for a plane, at cruising altitude somewhere between Pittsburgh and Austin, in the rug section at IKEA
# of times Neely has complained about any of this stuff: <20
(*okay, those facts might only be fun for me and my hubby)
Yes, my girl definitely exceeded her original goal. As for me? My only goal was to finish ironing a stack of laundry and … well … yah. Not so much.
Being hospital free has allowed us a comfortable layer of normalcy. We can take little risks like buying a week’s worth of groceries. Or HUGE risks like deciding to have another baby. Everything takes a lot more time and a lot more planning, but you could probably say that about any family of 5.
In a lot of ways, the things we experienced with Neely’s 1st year have made us into much more confident parents. There are many moments where something happens with Neely’s central line, ostomy bag, or something else and we have to quickly come up with a solution. Those are the “thread the needle” moments where we have to separate our emotions from the task ahead. Stuff like that is not easy, but it’s an important part of our goal to stay out of the hospital.
For example, one night at around, we heard Neely crying. She never cries at night unless something is wrong. Sure enough, she had vomited all over herself and her crib. Usually, vomiting is one of the first signs that she has a line infection. Josh and I internally freaked out, but on the outside we were methodical. We comforted her, unwrapped her swaddle, cleaned her up, took her temp, checked her diaper, and listened to her heart and lungs. I noticed her breathing was irregular and seemed labored. I felt that pit in my stomach, imagining a hospital visit was imminent. I decided to listen again and after a while, realized she was holding her breath so she could suck on her binky. She had a stuffed nose! (By the way, she has the tiniest nose ever.)
A normal, boring ol’ stuffed nose. Thank God.
I guess what’s not normal is that there are certain things we can’t take lightly. Vomiting, fever, fussiness … it could be nothing or it could be life and death (sepsis via a line infection). We always have to assume and plan for the worst. A line infection would be caused by bacteria entering her bloodstream. This puts us squarely in the middle of the “cleans everything with Clorox wipes” category of parenting. I am that person you might scoff at for wiping down the shopping cart, restaurant table, or the toy she dropped on the floor at the doctor’s office. A binky dropped on any public surface requires at least a Level 1 decontamination process of some sort. She could probably fight off a virus, but it might land us a few days in the hospital to be sure it is just that. A bacterial infection? There were at least 2 occasions where we almost lost her. So buy some stock in the Clorox wipes.
As usual, Neely takes all this medical stuff in stride. As long as she has her binky, Huggy (stuffed bunny), and Jonah and the Whale video, she can pretty much tolerate anything. It’s been so amazing watching her grow into this little person. She has such an easy laugh. She’ll laugh at herself, laugh at her sister, or laugh just because you are laughing. She loves to be tickled. She loves playing with her big sister. She loves playing dress-up with necklaces and bracelets. She is a total cuddle bug.
Don’t get me wrong – like any two year old, she can throw a mean tantrum. She can scream in pitches that I’ve never heard and her “woe is me!” full-body collapse deserves an Academy Award. When those moments test my patience, I try to remember to appreciate that she has lived long enough to throw tantrums.
She has accomplished so much this year. At last year’s birthday party, she was barely figuring out how to crawl. Now she is walking/running everywhere. She talks almost non-stop. Mostly single words for now, but she definitely gets her point across. Amazingly, she learned how to eat again. She LOVES to eat. She’ll try almost any food and one of her favorite words is “more”. There’s a little drama that happens nearly every night in the Lucquete household. Dinner is presented to the girls. Laney (the oldest) cries because she only wants to eat junk food. Every bite is a struggle with her. Tears are shed, threats are made. In the background is Neely asking for more, more, more of everything. The little girl with only 15cm of intestine. She amazes me, that kid.
In other fun news, she recently took her first real bath. I know that sounds insane at almost 2 years old, but the central line dressing can’t get wet. After we hit the 1 year hospital-free milestone, I decided that our next goal was to figure out how to get her in a real bathtub or pool. It took a few long nights of internet research, but I found a couple of products that would work with her ostomy and central line dressing. The whole bath process took around 3 hours, but it was so worth it to see her splashing around in the tub with her sister. She had the BEST time.
This led me to the next goal, which was to get her out of long sleeves and pants. She has always had bad eczema, which is why in most pictures you will see her with arm restraints, long sleeves, and long pants or pantyhose. That’s miserable in a Texas summer. I had read that a capful of bleach in the bathwater seems to help kiddos with bad eczema, so I added some to her bath. Then, I worked with her to take the focus off of her bare legs and arms. I painted her toes and distracted her with toys. I’m happy to report that she can now wear cute little summer dresses, sleeveless and with bare legs. She still goes through her scratchy phases, but not nearly as often. Actually, the problem now is that we have to watch her super carefully in case she absent-mindedly scratches her central line dressing, but I’m hopeful that we can overcome that eventually.
Medically, she is hanging in there. She is short and skinny for her age. She needs iron infusion about every 6 months for her anemia. She still has eczema, though it seems to be getting better. She is on her TPN for 16 hours a day (mostly overnight). Her liver and solitary kidney are okay, but sometimes those labs are troubling. As I’ve mentioned before, while the TPN saves her life everyday (shout-out to Coram, our home health pharmacy), the lipid component could eventually destroy her liver.
So the race we are running is still the same. Get the intestinal transplant before her liver gives out.
People often ask me about the transplant status. She is still listed as a Status 1 (high priority) for an intestinal transplant. That means we could get the call at any time. It could be right now or it could be years from now. A child somewhere in a specific transplant region has to pass away. He/She has to be of a specific size and have the same blood type (among other tissue markers, I’m assuming) as Neely. In that insanely horrific moment, at the lowest point I can imagine as a parent, his/her parents have to decide they will donate their baby’s organs. If they agree, the harvested organ may or may not be viable for transplant. If the organ is viable, we may or may not be able to get to Pittsburgh in 6-8 hours (although thanks to an amazing friend, transport should be the least of our worries).
There’s a lot to unpack in the paragraph above. A lot of whys and what-ifs. It’s hard, heavy stuff that keeps me up nights. Mostly the idea of handing my happy, healthy little girl to a surgeon who will operate on her for almost a full day. And that if/when she comes out of surgery, she will be in pain, on all kinds of meds, with new contraptions on her body, and all sorts of risks that come with transplant and organ rejection. She’ll be 1400 miles away from her home, her bed, her sisters, her Gwamma, her uncle. She’s not old enough yet to understand why we want this for her.
These are the things I struggle with at night when things get too quiet.
But that’s heavy stuff and probably not what I should write about right now.
No matter the circumstances, we truly believe we are blessed. We’re thankful everyday for our incredible support system of friends and family. Personally, I can’t believe I got to meet and marry this superhero husband of mine, who makes me laugh every single day. I can’t believe how lucky I am to have this wonderful little family. My crazy Laney, with her beautiful and nurturing heart. My resilient Neely, with her wise and soulful eyes. My lovely baby Eilley, with her easygoing nature and sweet cheerfulness. That’s my team, ya dig?
So we live our lives. We go through our routines and make all of these abnormal circumstances part of our story. Part of who we are. We appreciate the millions of happy moments we have as a family. We celebrate the milestones and try to block out the giant question mark that comes with them.
If you are reading this, you are part of our story too. Thanks for being a part of Team Neely.
Happy 2nd Birthday to my phenomenonal little rockstar, Neely Jacqueline Claire Lucquete.