We want to wish you all a happy and healthy New Year! Looking back at 2024 for our little Freya, it’s definitely been a rollercoaster. Here’s a photo journey that explains some of what she’s experienced in her first full year earthside.
January
Doing well, mostly, but starting to show signs of fluid accumulation (ascites) in her belly and some tell tale veins on her chest and abdomen have developed. Had her first ultrasound post Kasai procedure and confirmed the beginnings of portal hypertension.
February
We spent part of every day outside watching the chickens in the sun to help clear bilirubin. She had her first CT scan to confirm portal hypertension. Mama uses IR light therapy to try and treat the PHT, and we notice it does help reduce the fluid in the belly a bit.
Freya develops a fever of unknown origin and ends up in the ER and then getting admitted to Wolfson Children’s Hospital for fluids in an attempt to give her body a little boost. It ends up being one of our most traumatic medical experiences as the fluids completely throw off the balance of electrolytes, and she deteriorates very quickly. She has 3-4 very difficult blood draws daily, and they become so hard that even finding viable veins with an ultrasound machine becomes very challenging. One IV becomes infiltrated and her arm swells to double its size. She drops weight rapidly and goes from a healthy weight to emaciated by the time she is discharged. Smiles are few and far between and she mostly just has a thousand yard stare after this hospital stay. We are heartbroken for her.
Discharge! Now we begin the slow, hard work of gaining the weight back.
March
We have weekly weigh ins at the pediatricians, and at first she is still losing weight. Her little nervous system is still in shock. So we see our family chiropractor to get her nervous system back into a restful state so she can start gaining weight again. It works, and she’s putting it back on but not fast enough for her liver team. They’re talking about supplemental feeding through a NG tube for the first time. 😥
Back in the hospital we go to get the new tube placed, and so Mama can learn how to run the pump. She’s very good at pulling her tubes out. We are newbies to this tubie life, and it’s so painful to watch them place a new tube (sometimes twice a day) as she keeps pulling them out. But she gets used to it, and we do too by the end of this hospital stay.
April
We spend April in the sun, at the pool swimming, and recuperating from a rough few months. We make it a whole month without a hospital admission! But just barely…
May
Freya’s monthly labs look amazing, and so does she! Almost everything is in the normal range. Mom is ecstatic. We receive a call from GI and assume it will be to discuss how amazing her liver panel looks, but instead the nurse instructs us to get to the ED asap because her hemoglobin is dangerously low. The drop is so precipitous, they want to verify it’s accurate. It is, and we are being admitted again for an emergency blood transfusion. While placing a new tube, her nose bleeds terribly. The nurses all know us well now, and Hotel Wolfson feels more and more like a home away from home. The hematologist suspects that bleeding out as a newborn has finally caught up to her and caused the anemia which is the best case.
June/July
Freya develops a fever that lasts for nearly two weeks. Our first ER visit, they send us back home because she doesn’t show signs of dehydration. We go back the next night because she seems too tired to breastfeed and constantly cries in discomfort. Mom is suspicious of some masses that seem larger near her surgery incision. We are admitted, and imaging shows some pockets in her abdomen that look like they are accumulating fluid. Her team starts treating her for suspected cholangitis. Lots of ultrasounds and one more CT scan during this stay. She discovers how important her “emotional support syringes” are to getting through everything. Not only is Freya good at pulling out NG tubes, but she’s also become a master of pulling out IVs. Oh, and she had some very remnant traces of a common cold virus which puts her on the quarantine list. That means no walking around the halls, visiting the playroom, or leaving the her room unless she’s going for treatment or imaging. She is finally discharged and Mom will complete her antibiotic course through her PICC line at home. Scary! 😓
We complete the PICC line course at home and see the infectious diseases doc who gives her the all clear! Labs look good, and she looks great. Less than 12 hours later, we are back in the ED with fever. She is septic now. The cholangitis was more complicated than originally thought and she needed a longer course, but now she isn’t responding well to the cocktail they were giving her originally. Her organs seems to be shutting down, and the liver team in Orlando is contacted. She flies by helicopter to Advent in Orlando and Mom and Dad drive to meet her there. We are all in shock.
New hospital. We are scared. But the staff is incredible. Freya is angry and hungry and can’t eat until she has new imaging done (test results and imaging is so hard to transfer between hospital systems… why?) Also has all the same labs she just had drawn two hours prior at Wolfson. Everything is repeated and is so stressful on everyone. Her eyes are nearly swollen shut from crying. The ultrasound tech finally comes very early in the morning and it’s an extra long process because Freya is angry and uncooperative. But after it’s done, I can feed her and she goes right to sleep finally. 26 long hours without food. Getting the infection under control takes a lot of work, but things start to turn around. Her liver function has definitely taken a hit though and the team discusses transplant with us. We start the eval process. It’s a long process, and it gives Mom and Dad time to process the idea of what this all means for her. In the end, we understand that her quality of life will improve with transplant. But this changes everything for us. She is discharged, we go home not knowing what to expect as she recovers.
August-present
Grammy comes out from Texas, we celebrate Freya’s first birthday, take a trip to Savannah, and go see the transplant team in Orlando one more time before she is officially listed for transplant. Hurray! Then we join the COTA family, and y’all know the rest.
She is thriving and growing while we wait for that call. To see her looking so good after everything her little body has been through is something we never take for granted. We praise God for that, and we know well how quickly things can change for these liver babies. Every single day is a privilege, and what a gift a healthy liver is! Be good to yours. 💚
Happy New Year! 🎉