9 months later...

Being candid, summer was tough. Locked indoors. Few visitors. Michael traveling. Managing two babies. Coordinating countless doctor appointments and child care. Terrible twos. Relentless stress for a medically-fragile child. Alarms. Medicine. The hoops, red tape and time-consuming aggravation of doctor bills, Medicaid and insurance…But Shaw kept growing and getting stronger and I can already look back and see how far we've come.

One weekend in August, the weather turned; instantaneously, so did our spirits. The cool breeze lured us outside and teased that we were on the cusp of fall. The cooler weather was our turning point. Crisp mornings meant freedom to be outside (and no more air quality issues!!) You cannot imagine how something so simple can mean so much. Fall marked the threshold of hope and achievement.

Regarding Shaw's development, some time this summer, I wrote gleefully announcing Shaw had rolled over. I was so elated that I may have been 'premature' (pun intended). Shaw rolled over and over again that day, but didn't and hasn't rolled again (without prompting). We are working with physical therapy twice a week to develop muscle memory and strength. Shaw is so close!! It will happen when the time is right.

Shaw continues to wear his apnea/brady monitor. He occasionally has breathing episodes – he had one just this morning. To hear the alarm and rush to Shaw's side never gets any easier. I will never forget the look on my Mother-in-law’s face, as Michael and I raced to the sound of an all-too-familiar alarm, where she stood speechless holding him, frantically patting Shaw, but still with fear. It is humbling.

Fortunately, Shaw has been fine. Sometimes the alarms are false (as in the case with my mother-in-law). The wires have disconnected. He moved just the right way that his leeds no longer pick up his breath and heartbeat. The monitor has malfunctioned. Nevertheless, one high pitched screech and you are jolted out of your conversation, activity and thoughts and catapulted into prayer and assist.

The doctor says Shaw should be outgrowing his apnea very soon. During our last visit, the doctor advised us to continue to respond to the alarm, but not to stimulate Shaw immediately. Instead, we should assess his color - if he is pink and looks like he is breathing, wait to see of he will self-recover (start breathing again on his own). However, if he is blue, we should stimulate him immediately. ("If our baby is blue..." It seems surreal that this phrase is in our regular conversations). We have become quite dependent on the monitor ourselves and while once cumbersome and disenchanting, we now respect it and welcome the comfort it provides. 

In the meantime, Shaw has so many other accomplishments. He recently started solids. He is still nursing every 3-4 hours, so we hope this may prolong his hunger, but we are unsure if neurologically he can sustain. While tired, we remain grateful that Shaw is alert, happy and extremely visual. He recognizes voices and beams with pleasure to see his Daddy. He also is gaining just enough trunk/neck control to go from sitting ON you (supporting his neck like an infant) to resting comfortably on your hip or stealing a few minutes in the bumbo. This milestone alone is incredible. But Nash – he is the light. Michael and I will work for twenty minutes tickling, making faces, playing peek-a-boo for a hint of a giggle from Shaw. One glimpse of Nash and Shaw will burst into laughter. Being an only child, this is a phenomenon to observe. Brothers – my heart melts. (I’ll attach a video from this morning).

In August, Shaw was cleared by his doctors (Pediatrician, GI Specialist, Physical Therapy, Childhood behavior therapy, Neurosurgeon, Ear, Nose Throat, Audiologist, Ophthalmologist, etc.) for us to travel to NY to be with Michael, who has been commuting since Shaw came home from the hospital.

Our Neurosurgeon has been very clear that if/when we travel with Shaw throughout his life, we must always have an 'escape route' - meaning if something were to go wrong with his shunt, we should have access to a local neurosurgeon and be familiar with the nearest hospital. In NY, we have a Neurosurgeon on speed dial, just in case. (We also have a very exciting appointment at Columbia next week to get a second opinion). In order to relocate temporarily to NY, we also had to find a pediatrician and meet with her individually to walk her through our 'complicated' case, as well as establish PT twice weekly.

After weaning ourselves from the comfort and familiarity of our nurses and doctors in NC, we settled into our new routine in NY and have been relishing the fall and the adventures that come with a new city. Just yesterday, we were in Central Park cheering on NYC marathoners.

Other exciting news is the "No visitors" ban has been lifted (by us, not necessarily our doctors). We celebrated Nash's 2nd birthday in October and invited a house full of toddlers. While we are slowly releasing the reigns as Shaw continues to get stronger, Michael and I still can be seen with our baby covered in public, threatening to bite off a stranger’s hand if they so much as appear that they may lean in for a touch, shoes are removed by the front door and hand sanitizer can be found on one or both of us at all times. I can hear a person sneeze (with or without Shaw around) from miles away. If someone so much as clears their throat, we are tense and backlogging everything they may have touched or come in contact with in our presence. At this point, it is not just being protective; it's a way of life for us now.

The major concern right now for Shaw is RSV. Although most children will have had Respiratory Syncytial Virus by the time they are 2-3 years old, this virus causes respiratory tract infections and can be deadly to an infant with Shaw’s lung prematurity and BPD (bronchopulmonary dysplasia / lung disease). The RSV epidemic is rampant from October to March. Luckily, Shaw qualifies for a very special prophylactic medication, administered once a month as a preventative measure. Limiting our exposure to others is the best protection.

As we turn the nine month corner, things aren’t perfect, but we are grateful and doing the best we can. We still have very hard days. We are learning that the road is long and the fight will never really be ‘over’. We are just learning our new ‘normal’ and functioning the best way we know how. Books that I read with Nash about “Healthy Sleep Habits” are tossed out the window with Shaw. Things I said I would never do, we’re doing. It is as if we’re starting over, without a manual. No one has the ‘To Do’ with Shaw, so we are writing the book ourselves. I’m sure we will mess up. Many days we are beating our heads against the wall trying to figure out what is happening (does his head hurt? Is he congested? Is he spitting more than usual? is his head swelling?) We just continue to remind ourselves – as many challenges that we have – that we are blessed and Shaw is a gift to us.

Nine months later, we are often stopped and told "We prayed for you." or "We continue to pray for Shaw”. It can be in the most unusual places - a neighbor stopping us on a walk or at the grocery. A friend of a friend of a friend at a child's birthday party. A church member, that we haven’t met. Sometimes, it is surreal and I am in awe of how many people have reached out to offer support for us. Other times, I literally think to myself, “Thank God for you. I don’t know where we would be without it.”

I am so overwhelmed to say that our church just recently stopped providing us with food. Our bellies have been full of fresh baked meals for months, while our hearts have overflowed with gratitude. We are anxiously awaiting having Shaw baptized this spring and introducing Shaw into this church family - one that has cradled us in their hands and prayers for so many months.

We continue to pray for peace and strength for the Mighty Bottes & Mighty Cruise, as well as remain in awe of Sweet Lady Lu’s parents and the Smith family. We are learning so much from these families and their fight for their loved ones. Strife changes us. These families exude grace and determination.