Cause + Event with us!

We have had many many people ask us how they can help. Being only so familiar with the desire to do something when there is nothing to be done, we take these offers to heart. We hope that our gratefulness of prayers for Willa and our family are never minimized, because that is truly what we appreciate the most, but something more concrete is wanted by all of us. As we know more about what Willa's stay at Shriners will look like, we'll know more of what we'll need, but until then we hope you're available to help us with an event on Saturday, November 16th...

 



Cause + Event Portland is a fairly new running event that allows participants to CHOOSE the non-profit receiving at least half of the already-affordable $20 race fee (the remaining $10 is dependent on sponsorship). A few months ago I learned about this awesome event through another awesome event that was raising money for the CDH (congenital diaphramatic hernia) Foundation. I've become a big fan of only participating in running events that actually raise money for something. Bonus if I have a connection and/or know the organizing family. I'm sorry, but $40 for a bib chip and lame shirt? No thanks.

Back when I ran the LadyBug Run for CDH Awareness this summer, we thought Willa would be in the midst of her stay at Shriners when Cause + Event was scheduled to happen. I knew that myself in particular would need something constructive during that time. Something that would make me feel like I was doing something to help. Something I could do to honor my brave girl.

Enter the idea of hosting a team to benefit Shriners. And why not? I know plenty of people that like to run, plenty of people that like to walk, and plenty of people I could guilt into doing this for Willa. :) Now even better, Willa will get to participate too! She can ride in the jogger with Jo and run in the Kids Fun Run or Tot Trot.

So calling everyone that runs, walks, or cheers! PLEASE join our team of "Purple Shiners for Shriners" and be a sea of purple that envelopes our family with support. If you can't be there in person, Cause + Event offers a virtual option... they even send you a race bib and request that you take your picture running a "race" of any distance sometime between November 16 and December 1. Not a runner and still want to show your support? You can also donate directly to the cause via the race OR volunteer on race day.

As I see it, you now have three options:
1. Register to run or walk (5K or 10K) with us by clicking HERE.
2. Register to virtually participate by clicking HERE.
3. Donate to Shriners via Cause + Event by clicking HERE, or donate directly to the Shriners Hospital for Children by clicking HERE.

Thank you, thank you, thank you in advance.

Paying it Back... and Foward

In the literal sense, we've been "paying" ever since Willa was born (thank God for insurance!). Someday we'll be done paying bills to OHSU in Willa's name, but we'll never be done paying them back, in the figurative sense, and paying it forward in any way possible.

Yesterday the girls and I visited the NICU (DNCC), and it had been long overdue. We have created a norm to bring goodies at Christmas and needed items on Willa's birthdays every year since her discharge. Time keeps speeding up, and the swing we purchased after Willa's 3rd birthday in March (with the help of some friends' contributions) has been collecting dust in the corner of our bedroom. Not anymore...

Special delivery!

Every time we visit is similar. This time we run into one of Willa's secondary nurses getting into the elevator as we are getting out, the intake receptionist that remembers our last name, and another secondary that knows Willa with a glance.

On Willa's 1st birthday, we were so thankful to collect a variety of things needed by the nurses and PTs working with the fragile babies there...

Willa with two of the best docs in the world

March of Dimes was a big presence for us while Willa was in the NICU. They are most known for their work with preemies, but they really do amazing work for ALL babies! We've been incredibly fortunate to raise a few thousand dollars over the past few years in celebration of March for Babies (THANK YOU everyone that has donated in honor of Willa!). We've run into NICU nurses and our amazing L&D delivery nurse over the past few years, and that just feels right.

Willa's first year was exhausting...

2nd year w/ baby sis in tow

A family affair

This year we're planning a way to give back to Shriners. We have another set of simply wonderful people to pay back and pay forward. Stayed tuned for a blog post on how to help. We're soliciting all sorts of support.

Paying back and paying forward feels only more right as Willa gets older and understands more and more about where she came from and how she got here. That's important for any kid, but more so when the story is unique and, for lack of a better term, a God-given miracle. I always want Willa to know that she has been touched by so many people in so many ways. I want her to know that she is LOVED.

Our "Save the Date"

This wait was shorter than most. Thanks, in part, to D'Amato's care coordinator at Shriners. And perhaps the daily voicemails I left her.

Coincidentally, Beth knew of Willa before we knew of her. She happened to see photos of Willa's purple birthday party on the Facebook page of a friend she went to school with and lived with at one time. This friend happens to be the mom of one of Willa's little friends. They happen to be our ex-neighbors from the orange house. We happened to have met this neighbor after her little lady was born, a few months before Willa was due. Upon learning that she was a nurse practitioner in the NICU at OHSU, we didn't expect to literally lean on her and love her as we did (and do) during Willa's first 5 weeks of life. Coincidence after coincidence...

Besides becoming "pro-waiters" over the past few years, we've also learned how to push. We've learned how to be the parents that doctors want for their patients, but we've also learned how to form relationships with the doctors caring for our kid. Turns out that people will go out of their way to help someone they feel a connection with. I'm no stranger to that phenomenon.

The Child Life at Shriners (where Willa will spend 6-8 weeks preparing for surgery) can take Willa as soon as early December. Meaning that she would be there for Christmas. Which would be FAR less then ideal.

Ask, and you shall receive; seek, and you will find; knock, and the door will be opened to you. (Matthew 7:7)

So I do... Can we wait until after the holidays? Can we plan for her to be home before her birthday? Can we wait long enough to seek the second (or third? fourth?) opinion from the pediatric orthopedist at Seattle Children's in December (next available?!)??

"Yes, of course," she says, "that would completely reasonable," she says. Ask, and you shall receive. You'll receive a yes or no, but we receive both a "yes" and a date. Our date is early January -- early January to start the 6-8 week stay at Shriners preparing for surgery, then hopefully home before Willa's 4th birthday on March 11th.

She's planning a pink party this year. ;) Whatever you want, Brave Girl.

The Waiting Game

We're getting really good at waiting. We've had a lot of practice in the last five years... waiting to get pregnant, waiting to have the baby, waiting to bring her home, waiting to hold her / change her / feed her / bathe her, waiting for her to grow, waiting for her heart to change... waiting to see specialists, waiting for the receptionist to call her name, waiting for the doctor to come in. And now waiting for a timeline, a plan, the date.

Today we saw D'Amato at Shriners for the third time since June 18th. Every time we see him, I like him more. Today he walks in with a smile and recounts the neurosurgeon's take on the cleft in Willa's spine. He tells us we're ready to move forward. We're ready to plan for the lengthy stay at Shriners preparing for surgery, as well as the surgery itself.

And yet, we're waiting again. We're waiting to know WHEN that will be. When can we start planning and preparing and -- for lack of looking down instead of up -- dreading? We wait to find out when the schedules for our two newest VIP's can coordinate: D'Amato and Dr. Baird, the neurosurgeon we saw at OHSU. Baird will be supporting D'Amato and monitoring Willa's brain activity during surgery. I feel really good about these two people. They're known for being the best, but almost more importantly, I just feel really good about them. I trust them. With all the waiting we've done over the past five years, knowing that there is SO much out of our control (those things that we want to control the most, that we're grasping to control), we've learned the strength of trust. Because what else is there when you're literally trusting another person with the life of your little life?

I've always believed that everything happens for a reason. Something happens, causing something else to happen, causing something else to happen, and so on, until you realize how thankful you are that the first thing happened. Maybe this is a coping mechanism to make light of not-so-great happenings, but regardless, it's a retrospective way of making sense of your world. It also explains the phenomenon of coincidence. Coincidentally, coincidences seem to be commonplace if you open your eyes and your heart. Someone is listening. And responding.

Yesterday morning, the day I spent in nauseating anxiety about today's appointment, this was the daily devotion offered on my app:

This is my command - be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. (Joshua 1:9)

May we be strong and courageous. Not for ourselves, but for our girls. Both of them. Because that's what being a parent is, right? Making the world a better place for your kids. Even if you're pretending to make light of a dark experience. Pretend away. Because their joy in life is contagious.

Our New Normal

Our lives changed forever on March 11, 2010, at 8:52pm after [exactly] 40 pregnancy-perfect weeks of anxiously waiting to meet our little girl (or boy?). Except that moment of perfection and bliss quickly became one of panic and crisis when Willa was born so ashen gray and unable to breathe, and our delivery nurse hit that blue button. That blue button that summoned the NICU team of pure miracle workers that whisked our girl to the resuscitation room where she was bagged and further assessed.

Was that only 3 1/2 years ago? Because it feels like a lifetime.

Instead of leaving the hospital with our little pink bundle and anxieties about how to be new parents, we left the hospital empty handed. We left the hospital knowing that she wasn't expected to live. We left after hearing the cardiologist tell us to be prepared to turn off the machines.

Ours was the biggest (8lbs.6oz. and growing with swollen tissues) in the NICU, in her own room. I can still pick out the window when heading west over the Ross Island Bridge. Ours was the one with the slew of family visitors that kept vigil in the room next to the elevators. Ours was the one with parents there everyday after the family was sent home... until she came home.

I'll never forget the doctor that told us how sometimes they don't know the cause, sometimes they don't even know the condition. But they just treat the symptoms, and the baby gets better. Which is what happened for Willa. Those amazing doctors and nurses treated her every symptom. They consulted with physicians in Boston and Seattle and Cincinnati. They became not just her lifeline, but our lifeline to her. They will forever be the most important people we have ever had the pleasure to know.

Willa came home with a feeding tube and canular oxygen exactly 35 days after she was born. Her final diagnosis was pulmonary hypertension -- her right ventricle valve had swollen, which made it impossible for her lungs to get the blood it needed to oxygenate her body. As her heart relaxed, her lungs (and body) got the blood it needed.

There were other diagnoses and other treatments -- PT for brachial plexus (nerve) injury causing weakness on her right side, PT and chiro for [what presented as] severe torticollis (muscle tension) causing her head turn and tilt, helmet to correct plagiocephaly (mis-shaped head) due to the torticollis... But we knew we got to keep her. We knew -- when she weaned off her heart medication just before her 2nd birthday, and then again when her 6-month echo check at 3-years-old was "clean" -- that her body was strong. And we knew that we would do all we could to keep it that way.

In early 2013, Willa's PT at Doernbecher referred us to the pediatric orthopedist, because he was concerned about the lack of progress regarding Willa's torticollis. The orthopedist's plan was to get a CT scan to "rule out" any structural deformities. I remember being so proud of Willa, laying so still and quiet during the scan. The technician couldn't believe we were able to complete the scan unsedated. I wasn't. Willa was so used to doctors and procedures at that point. Bittersweet.

I was on Spring Break when the orthopedist's NP called to tell me that Willa in fact has congenital cervical scoliosis, rare in its own right, but more rare in the sense that Willa has four anomalies in her cervical spine. All research available in PubMed (physician database) only discusses how to treat one anomaly in the cervical spine. The orthopedist at Doernbecher wanted to "monitor" her. That was a plan we weren't willing to accept and support.

We were encouraged by a handful of dear friends to pursue a second opinion at Shriners Children's Hospital, conveniently located next to the OHSU facilities up on the hill. The intake worker ensured me that cervical scoliosis was a condition treated by Shriners. My relief lasted until our initial appointment with Dr. D'Amato -- a rarity orthopedist specializing in cervical scoliosis.

Every time we see a new specialist, it's the same. We give him/her Willa's brief medical history, and they respond in a way that makes it feels like we're over-exaggerating. Then they go look at her films and notes, and they come back realizing that we know what we're talking about. D'Amato was no exception.

I don't know what I thought we would learn at Shriners, but I was unprepared to hear D'Amato's plan for treatment. I think that appointment was the only time we've been visibly upset in front of Willa, and the only time that she has been concerned and asked why we were crying.

Summer 2013 was spent both avoiding and facing the reality that Willa was going to be spending time at Shriners, preparing for and recovering from major surgery to correct her cervical scoliosis. She had a renal ultrasound to rule out (I'm learning to hate that term) any kidney abnormalities, because apparently the heart, spine, and kidneys develop simultaneously very early in in a fetus. Thankfully, it was normal. She also had a sedated MRI to get a bigger picture of her spine and surrounding features, as was necessary to plan for surgery. Lo and behold, there is a cleft at the top of her spine -- something D'Amato "has never seen before" (another phrase I already hate) -- requiring a consultation with a pediatric neurosurgeon before moving forward with the surgery.

Our desperate prayers were answered with a neurosurgeon that was... well, for real. The cleft doesn't require an extra surgery and won't hinder the Shriners plan for treatment. She not only reassured us that the surgery on Willa's cervical spine was both appropriate and necessary, but she also offered to be at the surgery on consult. We got our second opinion, and we got our last checkmark before planning the real deal.

So the next step is back to D'Amato in a week to gather all this data and create a timeline. 7 days until we know whether our lives change in a week or more. 7 days until we know when our family becomes two segments, trying to sustain any normalcy. 7 days until we make the biggest decision about what is best for our girl.

Of course there are other pieces to the puzzle -- half-day NICU follow-ups at CDRC, barium swallow studies to assess oral aversion, a chromosomal array to determine possible genetic mutations (none). I wonder who we haven't seen at Doernbecher. I wonder why Willa isn't a part of some "study" about the randomness of fetal development. I wonder if this is the last piece of the puzzle. If we can finally say with certainness "THIS is it." Because we've said that so many times before.

I know for sure that Willa has been our ticket back to our faith. I know for a fact that three days after she was born, a NIKE-wearing priest offered to baptize our girl (and drank the holy water afterward), and her stats finally stabilized. I know that Father Jim will always be a VIP to the Sallee family. And while I've often asked "WHY?!" I've been given different answers at different times. I hear that if He brings you to it, He'll bring you through it. And yet the comfort behind that statement weakens.

So we live and we pray, and we find comfort in knowing that there are many people loving Willa and praying for her everyday. We have seen her touch people in a unique way, and I have no doubt that her life has Purpose. All we can do is wait and see.