Birdie’s Fight for Flight (2025)

20/05/2025

Birdie is a finishing up her last week of kindergarten!!!! It is SO hard to believe! The year absolutely flew by. All in all, it was a successful year and she is thriving!

We are currently in the process of getting a second opinion at Cincinnati Children’s Hospital regarding her airway and what surgical procedure she’ll need before she can get her trach out. We’ve been working through this for a loooong time, but we believe it will have been worth to wait if it means that we have enough information to make the best decision for her health. I will update on that when we know more!

17/11/2024

A win and an update!

The win:
As some of you who have been following our story for a while may remember—Birdie had to relearn how to walk following her liver transplant in 2021. When she went into liver failure, her team put her in a medically induced coma to protect her brain and other vital organs from further damage. During that time, they put compression devices on her legs to help with blood flow and minimize the risk of clots. Well, the compression device on her right leg ended up giving her a pressure sore which caused an ankle contracture, resulting in Birdie losing range of motion in that ankle.

The loss of range of motion was discovered when we returned home from Omaha and the solution posed was for her to do serial casting. Serial casting is a technique used to gradually improve range of motion where you apply a series of casts to the affected area over a period of time. During this time we would go into see ortho each week and they would stretch her ankle, then put it in a new cast (see photo). My brain is fuzzy on the timeline now, but I believe this took about 8 weeks. Since then, she has worn an ankle brace at night on and off to help that ankle maintain that range of motion.

We were warned though, that as she grows, it is likely that her ankle could tighten back up and that is where we found ourselves in the past few months—with a night brace that was too small and her ankle slowly tightening back up again.

So, we went back to the Hangar clinic to get fitted for a new brace and then scheduled an appointment with a physical therapist at Children’s Mercy.

During the first appointment, we were disappointed to learn that she had lost enough range of motion that they were suggesting serial casting again. I asked what our other option was and was told that we could try gradually increasing the new stretching brace along with weekly PT sessions for 6 weeks to see if it improved that way. I thought hard about it and decided that it made more sense to do the least invasive piece first and if that didn’t work, then we’d agree to doing serial casting for 4-6 weeks.

WELL, HALLELUJAH—after only 5 weeks, Birdie is back at the correct range of motion and we will not need to do serial casting!!!!!!!! This girl is such a rock star! ⭐️

The update:
We are still sifting through the results from Birdie’s liver biopsy. What we do know is that her rejection score has improved since her July biopsy (she was at a 5 out of 9 in July and now she is at a 2 out of 9). The pathologist did note “scattered plasma cells and rare lymphocytes” on her most recent biopsy though. Our team is asking for another biopsy in 6 months and for us to do special labs this upcoming week because sometimes plasma cells can indicate autoimmune hepatitis (which can be managed with additional medication).

Continued prayers as we try to find that sweet spot for Birdie’s liver and her medications. And as always—lots of gratitude for the joy and overwhelming love this special girl has brought to our lives!

💚💚💚

(The first photo is from 2021 when she was 2. The second is Birdie getting ankle measurements done with her physical therapist recently. She’ll be 6 in a few months! Crazy!)

04/11/2024

We took family photos this weekend!

The day of the biopsy went well and now we continue life as normal and wait for results.

Thank you for the calls, texts, and Facebook responses to my post on Friday. I’ve been holding a lot inside and it felt good to share and to receive support. Appreciate you all!

💚💚💚
(Green is the color of the liver transplant support ribbon)

01/11/2024

She’s back out! And was SUPER excited to see her baby brother 🥹

01/11/2024

Birdie just went back for a liver biopsy.

I haven’t done any updates lately, but figure now would be as good a time as any.

Back in July, Birdie had a routine liver biopsy during which it was discovered that she was experiencing “silent rejection”. Rejection is when a donor's body attacks a transplanted organ. What makes it silent is that this rejection lacked the obvious signs or symptoms of rejection. We keep track of Birdie’s liver enzymes through frequent blood draws to make sure they are in range and that is one of the best ways our team is able to keep an eye on rejection (higher numbers = higher chance of rejection). So, over the summer, even though her numbers appeared to be in a reasonable range, she was experiencing rejection.

Rejection is common in transplant patients and as those of you who have been following our story know–we’ve dealt with this before. What made this time harder than before was that:

1) We had gotten down to one immunosuppressant medication from three and thought Birdie’s body was finally adjusting to her new liver.

2) This meant we would have to go inpatient, something we hadn’t had to do in a long while.

3) It brought up a huge question–how do we know how her liver is doing in the future if we can’t count on her lab draws to tell us?

Our care team came up with a plan. We’d go inpatient for steroids, go home on a steroid wean/taper, add another immunosuppressant medication, and then aim to keep her numbers on the low side of normal. The same formula we’ve followed before, with the additional aim of keeping her numbers even lower than before. I expressed concern that we were doing the same thing we’ve been doing and wondered why this time would be different, but they were pretty set on this being the solution.

We listened to the team's plan and have followed, but my mama gut has been telling me that something else is going on. Something bigger than just doing the same thing we’ve done time and time again (rejection, steroids, more meds) will fix.

Today, Birdie is doing another biopsy of her liver to see what it looks like now. Depending on if it looks the same, better, or worse than it did in August, we will determine if we will once again be seeking a second opinion out of state. We will get result next week.

In the meantime, please keep us in your prayers. Life has been so beautiful lately, but this has been in the background. I can’t really express in words what it’s like to both see your complex child thrive and at the same time be constantly worried about her physical health. Or what it’s like to say goodbye to her as she rolls back for yet another procedure and round of anesthesia.

Sending us peace and Birdie healing makes all the difference during these moments.

I’ll keep everyone post

11/06/2024

We are way overdue for an update on Miss Birdie!

Birdie has had a wonderful, peaceful spring. We’ve been soaking up the lazy days, visiting lots of parks and bookstores. We will be wrapping up her time at her school next month, which is both exciting and bittersweet. This mama will certainly be shedding tears when we say goodbye to the developmental center she has attended for class and therapy since she was 6 months old. It’s hard to believe Birdie will be entering kindergarten in August! Expecting even more tears when school begins because as all of you all know who follow this page—Birdie has overcome A LOT in her five years. She continues to impress us all with her capacity for growth and resilience.

We received some tough news last Monday that I’ve spent the week processing and am ready to share. We went to see Birdie’s ENT doctor and he told us that in order for Birdie to get her trach out (decannulation), he would first want to do a complex airway reconstructive surgery to widen her airway. We knew ENT wanted to do something with her airway before eventual decannulation, but had no idea how complex and lengthy this procedure would be. The surgery would involve removing a piece of her rib and creating a graft for her airway, then placing a stent in her airway while the graft heals. We would stay in the hospital for 4-5 days, then go home with the stent in place for several weeks before returning to the OR to get the stent removed. By their estimation, the process would take about a month from start to finish. But as I told the doctor this week—Birdie has had countless surgeries and one thing we’ve learned along the way is that whatever we’ve been told by our teams about recovery, in reality, it will take much longer and turn out to be more complicated than expected.

There of course is also PTSD for us all around surgery. Birdie hasn’t had a major surgery in 3 years and the thought of her returning to the OR for hours again while we wait for news is difficult to think about. And now she is old enough to process what surgery means and had many questions following the appointment. There is no class on how to talk to your medically complex child about the scary, complicated life you all live. It is something we are forced to improv single every day.

I work hard not to have expectations on our journey, but I realized I had secretly developed a hope in my heart—Birdie getting her trach out before kindergarten without complication—and that hope was completely dashed last week. I am feeling more confident and hopeful now, but it was a journey to get here.

At the end of the day, Birdie deserves to breathe easy without a trach and if this surgery will do that for her, it will be our next step. We’ve requested to wait until late spring 2025 for the surgery so that Birdie would have next summer to recover, instead of us trying to juggle all of this during the school year and respiratory season.

I will keep you all posted on what happens. For now, enjoy these photos of Birdie living her best life!

14/02/2024

5 years ago today at 8:45am, a beautiful baby girl was born. Her parents decided that the perfect first name for this child would be Birdie, named for her maternal great-great-grandmother. They also decided that her middle name would be Ayumi, the Japanese word for “walk”, which in a name means “to walks your own path”.

Her parents didn’t know much about what the future would hold for their baby, but they knew that they would fight with all their might for her place in this world.

And that we have.

Birdie, you are a joy and a true gift to our lives. I am blown away every single day by your strength, resilience and wisdom. You are fierce, you are thoughtful, and you shine so, so bright.

HAPPY FIFTH BIRTHDAY to our sweet girl! We love you!

31/01/2024

Jan 31st is Omphalocele Awareness Day!

Five years ago today, I shared the news of Birdie’s diagnosis with my community and WHAT A JOURNEY IT HAS BEEN. Today, we celebrate our O warriors and the parents who welcomed them into this world. It’s not a community I would’ve chosen for myself, but at this point – I wouldn’t have it any other way.

Enjoy these recent photos of sweet Birdie. She has grown so much this year 😭

🖤🤍🖤🤍

29/12/2023

I had a box unchecked on the NICU Amazon book lists that made it so that once a book was purchased, it disappeared 🤦🏽‍♀️

I fixed it, so now everyone can buy as many as they please! If you were one of the people who tried to buy and it looked like all the books were gone, try again! I’ll leave the links in the comments 🤪

Enjoy this photo of Birdie working hard in feeding therapy today 🙌🏽

20/12/2023

Hi friends and family!

As you wrap up your Christmas shopping, I wanted to share a way you could throw in a gift for our NICU families at Children's Mercy!

There are currently two book-related projects that could use your support this holiday season:

-Books for families + babies in languages other than english

-Books for inpatient parents about the NICU experience

I will link both Amazon wishlists in the comments. If you feel moved to do so, ordering a book (or a few) from the lists would be greatly appreciated! Please reach out to me if you have any questions!

Enjoy this photo of Birdie who is thriving in large part because of the care she and our family received early in her life in this NICU 💗

05/12/2023

Today, I sat down to do something reflecting and realized that over the past year and a half, we have had nine hospital admissions.

During that year and a half Birdie fought PTLD, battled bouts of rejection, underwent several procedures and endured countless pokes for IVs and blood draws.

The length of time between our last two hospital stays was the longest yet—4 whole months.

Birdie is in the best place she has ever been health-wise. She is fighting off illnesses on her own, her liver numbers look great and she is no longer on respiratory support.

I am praying and believing that Birdie will continue to thrive. That our breaks from the hospital will get longer and the stays less frequent.

Someone once said to me, “Birdie is so brave, but I hate that she has to be.” My prayer this holiday season and for 2024 is that she gets a break from having to be courageous and can just be a kid. She deserves that after all the kicking butt she has done for the past 4 (almost 5 🙀) years!

09/11/2023

We had a brief hospitalization last weekend due to fevers. Fevers don’t automatically equal going inpatient, but this was a particularly high and intense fever. It came out of nowhere and after just over 24 hours, seems to have gone away just as quickly. We’ve been back home for a few days now.

Birdie’s last stay was three months ago, which was a pretty good stretch compared to last winter and spring. I can tell our baby girl is getting stronger. Praying that the stretches in between stays keep getting longer and longer!

Although being in the hospital is never fun for any of us, I do appreciate having us all there together. Most of our stays tend to be a lot of waiting around with Birdie in good spirits, so it’s almost like a little break from “real life”. Going, going, going stops for a minute and our family gets to be with each other in this particular way that I can’t help but appreciate. It’s the little things, I suppose.

Birdie’s Fight for Flight

20/05/2025

17/11/2024

04/11/2024

01/11/2024

01/11/2024

11/06/2024

14/02/2024

31/01/2024

29/12/2023

20/12/2023

05/12/2023

09/11/2023

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