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.
