Category Archives: Waiting

The Accidental Sabbath: Plans for 2017


The last third of the year can become unenjoyably busy for our family very easily, with ten family birthdays and our anniversary sprinkled in among the bustle of Halloween, Thanksgiving and Christmas.  So in 2016 Greg and I resolved to designate one day from each weekend in October, November and December as an “at home only” day: no outings, no plans, no chores and no to-do list.  We called it a family Sabbath, although we first instituted this for practical reasons and our own comfort rather than as an effort to obey the religious guidelines of Sabbath keeping.

When we first decided to implement this in October, I breathed a sigh of relief, knowing that we would benefit so much from the rest this boundary around our schedule would afford us.  There was one problem though. The only date that worked well for Rowan and June’s joint birthday party fell on the same weekend that the huge Lego tour would be in town. The Lego event that Rowan has been asking to return to since he saw it the last time it came to town two years ago.  The one I had been excited to take the kids to for months.

We looked at three different scenarios: attending an abbreviated weeknight Lego session, packing the Lego fest in on the same day as our at-home birthday party, or breaking our Sabbath guidelines and attending the beloved Lego event on the second day of that weekend.  We decided to break our new rule and go to the event on the second day of the weekend. After all, we made the rule so that we could enjoy the holiday season more fully, and we knew we would all enjoy the Lego fun. This never sat right with me though.  In seasons past when our busy-ness sapped our strength and joy, our schedule was (over) filled with fun, enjoyable things- no drudgery; yet the pace still wore on us. So I sensed that breaking our Sabbath boundary to avoid missing out on something fun and enjoyable was not going to work at all.  I knew that every single weekend during this festival-and-party season, the prospect of something fun, memorable, important or educational would beckon to us, asking to be dropped into that emptied Sabbath calendar square.  Still, I persisted.  I told myself, “We’ll go to the Lego fest this one time, then that’s it- we’ll protect a Sabbath day each week through the end of the year.”

Two days before the big weekend, I went online to secure tickets.  I had delayed, at first, because we were throwing around our scheduling options, and next due to reluctance mixed with a delusional belief that the less popular time slots wouldn’t sell out.  In reality, all of the time slots for this hugely popular, once-every-two-years event sold out long before I got around to checking on tickets.  So we didn’t go.  After the excitement of their birthday party, the kids never even asked about the Lego event that weekend.  They still haven’t- it just hasn’t come to mind. While I’m sure the event would have been a blast, I was surprised that there really was no sting in missing it.  And we had a very restorative day at home instead.

That first experience illustrated to us the immense value of rest, and it revealed that the one obstacle that most often robs us of rest- the fear of missing out- is actually not a very formidable foe; it turns out that the thing we feared- the phantom prospect of missing out on something- never materialized at all.  True, we did not attend the Lego event.  But during our peaceful unplanned day spent at home, we did not miss it either.

This is how we started to implement the principles of Sabbath as a family.  We continued this practice of keeping one weekend day clear for the rest of the year.  We have enjoyed it so much that we are going to continue it indefinitely.

A quick look back:

Unbeknownst to me, this Sabbath idea was percolating at the beginning of 2016.  Last year began with a post about The Big Rocks: Self-Care for Care Givers, which describes prioritizing items in your schedule which are of the most value to you, then fitting in less important or unimportant tasks around those big rocks. It seems as though the rest of last year was a slow, progressive implementation of that post as our family pared down our schedules and our possessions.  That was providential because 2016 was indescribably stressful for me, with so many people, opinions and mistakes thrown into our well-established routine via the Medicaid hoops, nursing SNAFUs, invasion of our introvert sanctuary, the start and shuffling of twice-a-week therapies, the transition from ECI to the school system and ongoing nursing and Medicaid difficulties. This “Big Rocks” process of purposefully stewarding our time and energy protected my sanity last year.  At the same time, I was completing an intensive spiritual discipleship program through our church which introduced me to the works of CS Lewis and other gifted Christian and Jewish theologians.  As I studied, the themes of prioritizing my time and resources and seeking rest stood out to me, given my stress.  Naturally this led to the study of the Sabbath, with is prominent in the Jewish theology I ventured into, and which is the subject of the Bible study I ultimately finished the year on (Priscilla Shirer’s Breathe).

A look ahead:

As I mentioned in the last post, however, this attention to rest and Sabbath results in less blogging.  Or no blogging.  So, while I have many topics and resources I would love to share, posts in 2017 may be sporatic.  If you ever wish to check-in with us or ask a question, feel free to use the Contact button on the blog.   We don’t expect any big medical changes for June this year, since she recently got her g-button out (WOOHOO), and her doctors want her trachea to grow for another year before re-evaluating options for another attempt at removing the trach.  However, Greg is hoping to transition into a new professional field this year, so we are waiting to see what new adventure his school and career opportunities will bring to us as a family, in terms of our routine and location.

We are quite excited about the year ahead.



8 Strange Things About Expecting an Uncomplicated Delivery After Having a NICU Baby

If he can stay put long enough, we are expecting the arrival of our next little one by C-section next week. We are only now getting around to preparing the house for his arrival by sorting clothes, setting up the crib, and installing the infant car seat. The timing struck me as odd since we did these things months in advance with my son and daughter. We’ve been so busy, and it always seemed like we would have more free time to prepare sometime “later” than we had in the present moment. This was actually one of several things that have struck me as odd as I anticipate this baby’s arrival, as compared to the complicated early birth of my daughter two years ago.  (More about that here under tracheostomy and health related.)

8 Strange Things About Expecting an Uncomplicated Delivery After Having a NICU Baby

(for me at least…)

1. You never assume your pregnancy and birth will be normal and uncomplicated until it actually happens that way.

My first pregnancy with my son was complicated by symptoms of preeclampsia, although he made it full term and had an uncomplicated birth and nursery stay.  I had a second pregnancy a year after the birth of my son which ended in an early miscarriage.  During my third pregnancy with my daughter, I illogically assumed that by some “law of averages,” I would experience a normal pregnancy after having two difficult ones. Although ultimately proven false, this assumption did allow me to have a relatively anxiety-free pregnancy until her tachycardia manifested at a routine 30 week check-up and I was suddenly surrounded by doctors talking about Life Flighting me to the medical center downtown.  I made it another 4-and-a-half weeks, but June was then delivered early and spent 2.5 months in the level 3 NICU. So this time around, I made no assumptions either way.  I was neither convinced that everything would be fine nor that “something bad” would happen.  I just checked off every milestone as it came:

Made it through the first trimester without miscarrying, great.

Passed the genetic screening, great.

Normal anatomy scan, great.

Normal diabetes test, great.

No high blood pressure, great.

And now: finally made it full term!  Great!!

It may seem like not assuming the best outcome from the start would be less enjoyable or less peaceful than maintaining blind optimism.  I didn’t experience it that way though;  I appreciated making it past each milestone much more since I didn’t take it as a given.

2. Your pregnancy goes by quickly.

This may be related to having subsequent kids in general, as you are chasing after little ones rather than searching WebMD everytime you have a twinge or twitch. And if your NICU baby is still in the “medically complex” category, you have even more on your plate distracting you from your swollen ankles and food cravings.  I was even so blessed as to have minimal nausea; sometimes this time around I almost forgot I was pregnant. When I thought to check my pregnancy tracker app, I was always shocked to see how many weeks and even what trimester I was in.

3. You get to use baby clothes you couldn’t last time.

For most of her NICU stay, June was not allowed to wear clothing due to needing a warmer, having a central line, or some factor in her case necessitating  immediate observation of her respiration and coloring. When she came home in the “winter” (the Texas winter) at 2.5 months, she had outgrown a few items and others were out of season. She had also missed Halloween, Thanksgiving, and Christmas with us along with the cute holiday outfits.

4. You realize you don’t have to modify clothes for tubes and wires.

As I sorted through the clothes today, I often thought, “These pants won’t work with the pulse ox probe,” “That Velvro is going to stick to all the gauze,” and “There isn’t any access for the EKG leads or g-button.”  It was strange to realize my new baby (hopefully) won’t have all of those attachments!

5. You wonder what you’re going to do without all of those tubes and wires.

Despite the fact that my first child’s infancy was normal, now when I see strangers relaxing while their baby naps in a covered stroller, or in a corner or in the next room,  I can’t fathom how they do it.  June has required 24/7 visual-or-pulse ox monitoring since birth.  A silent trach plug can be fatal in a matter of minutes.  How can I switch gears with this little one, allowing him to sleep unobserved and unmonitired, trusting completely that his respiratory and cardiac systems will just do everything they need to do? I hope the switch will happen naturally somehow.

6. You will feel like you’re smuggling your baby out of the hospital.

This hasn’t happened to me yet, but I guarantee you that if I’m able to leave the hospital after 3-4 days with my newborn in my arms, I will be looking over my shoulder expecting a nurse to chase me down and take my tiny baby back to the nursery.  After all, they kept June for 2.5 months, and when she did get to leave with us, our car was followed by an entourage of nursing agency staff and DME reps to get us set up at home. We practically brought the hospital home with us.

7. You realize you’ll experience firsts that you missed the last time.

For us: hearing the baby’s voice, rooming in, being able to do skin-to-skin early, nursing without pumping, changing those first diapers (eeeek), giving the first bath, tending the imbilical site, dressing the baby, and the two most radical for us- introducing a newborn’s sleeping and feeding schedules into our home and having a baby in the house that can cry…out loud…

8. You’ll marvel at the fact that you made it.

I still can’t believe I’ve made it full term AND nothing weird has happened. So far.

A Year Ago Today

For many NICU families, two days are remembered every year in addition to the day the child is born: the child’s actual due date (in the case of preemies), and their homecoming day.  December 26th will always be special in our family because a year ago today we had the long-awaited privilege of bringing June home from the hospital for the first time.

Going Home Day

In the hospital parking garage, more than ready to drive home with June for the first time.

Until that time, she had spent her entire two-and-a-half months of life in two different NICUs and a Cardiovascular ICU hooked up to monitors, machines, and IVs continuously.

She had never been in the sunlight or under the stars.

She had never felt a breeze on her skin.

She had never slept or played in anything except a hospital issued crib.

She had been in a car seat only once in her life a few days prior when she passed the car seat safety test as part of her NICU discharge planning.  (Seeing her in a car seat for the first time- something from home, that we chose…something that wasn’t hospital white- was actually a really momentous occasion, and I immediately emailed a photo to everyone we knew.)


First time in a car seat, passing her safety test as part of preparation to go home

The last two days of her hospital stay were very emotional for us because on Christmas Eve, the doctors approved for her to be discharged the next day so she could join us for Christmas.  But our durable medical equipment (DME) company does not allow discharges on holidays when their main office is closed and therefore can’t provide emergency equipment replacement if needed. (This is what my DME rep, the manager on duty, the receptionist, and the after-hours on-call rep all told me when I harassed everyone I could about the policy.)  Since the DME company needed to be present at our release and later at the house to set up her essential medical equipment, our sweetie had to spend Christmas Day in the hospital last year.  We brought her home on the 26th.  And honestly the immense relief of having her out of the hospital, in our car and in our home for the first time was overshadowed somewhat by the invasion of DME reps and home nursing company staff that descended on our house for hours with reams of paperwork to complete with us.  We didn’t have her truly alone, to ourselves, until 9pm, and that was after I turned away a poor nurse that our (terrible!) former home nursing company had errantly sent us for an evening shift that night (very shortly afterward we cancelled home nursing completely- more on that in a future post).

But finally.  At about this exact time in the evening one year ago,  we were alone with our beautiful miracle.  She seemed as though she was finally ours, completely.  We could hold her whenever we wanted.  She was in our home, in the wooden crib her brother had once used.  She saw her brother, who she had only met three times before small children were barred from the ICU wards for RSV season.  She met her two dogs and cat for the first time.  And- it warrants repeating- *we could hold her whenever we wanted.*

At Home


I found myself bedraggled twice in the month of May- once literally and once figuratively.  The first one was literal, when my 90 pound Belgain malinois decided that her arthritic legs urgently needed to rest in the middle of our 1 mile walk.  I was on a main road in our fancy subdivision.  June was perched in her car seat atop the giant double stroller.  Rowan had just reclaimed the bulky push toy that I had latched to the stroller handlebar when he was tired of pushing it 10 minutes earlier, and he clattered along “mowing” the next half block of side walk.  Tracy was pulling on her leash to go, go, go, happily in any direction.  And Sahara laid down.  In a puddle.  In the middle of a commercial grade sprinkler shower.  She was limping badly and could only go a few steps before laying down again.

Being the rational adult that I am, I decided that since Rowan wasn’t using his seat in the stroller, I would load the dog into it for the half mile walk home.  I entered the sprinkler zone to retrieve the wet dog.  With the stroller wheels locked, I funneled a tenth of my dog into the toddler sized seat and rested the bulk of her on the snack/restraint tray.  Which promptly broke, spilling Sahara onto the sidewalk again.  And so, with patches of wet dog hair stuck to me like Big Foot, I walked home in the 10 foot increments my limping dog could handle- runaway toddler, boxer and baby in tow.

And this week was the figurative bedraggling by a downpour of various unexpected ‘stuff.’ June was given the much-awaited go-ahead for a trial off of her heart medication, which meant we needed to watch closely for signs of her tachycardia coming back*.  Sahara saw the vet for said arthritis and was given pain meds, vitamins, and instructions to rest and ice her knees once a day.  June also had a new twice daily medication which was nebulized, and no one in the house likes that process.  Centerpoint appeared in my backyard unannounced, via removing several boards from my fence, and dug a man-sized hole exposing live electrical lines. Which was interesting.  And Rowan just had fun being Rowan and doing arts and crafts (both good things).  While I made lunch one day he asked,

“Mom, can I paint on me?”

He was using watercolors so I said sure, what’s the harm? Then quite a while later when I was cleaning paint out of Rowan’s ear canal I thought, “Hmm, it’s been quite a week.”

But don’t worry- I recovered.  This past weekend I was tiredly lamenting to Greg that I wasn’t able to ice Sahara’s knees on one day this week and I forgot to take my own vitamin twice and how I should have started June on solids and it had completely slipped my mind.  And he wisely advised that I get out of the house for a bit to relax.  Because with all that we have going on, if my biggest frustration is that I didn’t get to ice the dog’s knees, I might need a little fresh air and perspective. I took a bike ride for the first time in about a year. I met two turtles

and discovered an awesome park with shaded play equipment that likely doesn’t become like the surface of the sun during summer days.  And June even temporarily got over her separation anxiety in honor of my outing, and was calm for Dada.  I even sewed later. Well, I mended some clothes but that’s a gateway to real sewing. All’s well that ends well, month of May.

*No tachycardia recurrence so far!


So June and I are back in the hospital for the third time in a month.  We intend for her to fully conquer this respiratory bug before going home so that we don’t have to rush back here any time soon. The docs believe she’s almost recovered though, so we might be released soon-ish. In the meantime, she’s very stable, joyous, and charming *everyone* here. The funny thing we’ve observed about serial hospital admissions is that you seem to get a swankier room each time.  At least you do when they can’t rule out contagious airborne illnesses upon admission*.  We’ve worked up to what seems like a hospital condo, or what I have dubbed our “hospi-condo,” a beautiful private room with digital tv, a pull out bed for me, and a full bath.  It even came with a folded towel snail like on a cruise. 

A few days ago I watched a helicopter land on an adjacent building while I ate breakfast. Simply put, and without speculating on the reason for its arrival, it was pretty cool.
For reference, this was our experience on the other units, including those from last year:
The NICUs at both hospitals we were at are pretty similar.  The NICU takes up most of a hospital floor and can be accessed by several secure doors that are staffed and/or video monitored 24/7.  The NICU is arranged into 7 or 8 “pods” which are large areas connected to each other by large open doorways. Each pod is arranged into 10-15 sections separated on two sides by partition walls but open to a common walkway.  Each section has 3-4 babies and two nurses. Unless the baby is in an isolation room, the baby’s “bed space” includes the crib or isolette and room for machines and monitors on either side; maybe 8’x8′ total. It’s completely open, not enclosed or partitioned from other bed spaces, but rolling screens are on hand for breastfeeding moms to use.  Accommodations for mom and dad include a reclining chair, if available, that can be placed near the crib, but it often has to be shimmied out of the way of people accessing the bed space or alternatively of people using the surrounding common walkway. A blanket and pillow could usually be obtained for parents camping out overnight. Most bed spaces didn’t have windows, and needless to say, no tv, bathroom, or guest bed, as is very appropriate- the precious space on this unit must be dedicated to the life saving machines and a low nurse-to-patient ratio. Families on this unit could always use Ronald McDonald house during the day for fridge, kitchen, showers, laundry, naps, and computer, and then there was an overnight stay room lottery. But so there are so many NICU patients, I rarely “won” a room for the night when on this unit.
Cardiovascular ICU (CVICU):
On the CVICU we shared a large room that was separated by curtains into three bedspaces.  Sadly, there were no recliners.  I sat in vinyl cushioned 4-legged chairs, and I usually snagged one with armrest bars. At night I could usually round up a second to put my feet on. We had a TV but it wasn’t working, and I preferred to sew or read anyway. There was a family room on the floor below where I could sleep in a reclining chair, but if I was going to sleep in a chair anyway, I preferred to be next to June. Blankets and pillows were always readily available to check out from that floor.  We had a breathtaking view of the city from the room’s window.  Our bedspace was furthest from the window, but they rotated post-op patients in and out of the bedspace near it so I got to admire the view close up pretty often.  Families on this unit could also use Ronald McDonald house, and with far fewer patients, I almost always got a room (SO nice).
Emergency Center (EC) admissions:
These last three times we’ve been admitted via the EC.  After initial exam we were given a small private room to wait for feedback from the doctors on whether we’d be admitted or treated and released. The room has a TV and two vinyl cushioned chairs. All three times we were ultimately admitted, so we waited in the room while the EC found an available bed on a unit that fit our needs. On our first unit admission, we were placed in a large room separated into four bedspaces by curtains.  I had a lovely recliner and a working tv, but no private bathroom.  On our second admission, we got a private room with a tv, private bath, a beautiful big window, and **most** importantly a pull out bed for me to sleep. No towel animals though. And now our third admission features the “hospi-condo” which seems big and sleek because it’s not on an intensive care unit, so there are no monitors or machines adorning every corner.  Even the necessary equipment and hook-ups are hidden inside stylish roll back cabinets.
And this view.

Circumstances completely aside, it’s a comfortable place to spend a week. 
*she’s negative for contagious airborne illness, thankfully, but we’ve been able to remain in the private room!

Waiting Place

This quote definitely reminded me of how I’ve felt for almost a year.  My waiting place is coming to an end, though, and instead it is time for me to a make a major life decision very soon.  The Psalm quoted here is still very applicable, because I realized this week that I had been anxious and fearful about my decision.  I realized that the first step in making a sound decision is to quiet that anxiety and fear, or at least don’t heed it.  A quote from one of my favorite all-time shows (tease me if you want), Touched By An Angel, often came to mind this week: “Don’t listen to your mind, because your mind is confused.  Don’t listen to your heart, because your heart is fearful.  Listen to God.”

“I’ve been in a waiting place over the last few months. I didn’t know I would be in a waiting place. It’s the kind of thing you don’t plan. And it reminds me I’m not in control. Psalm 43.5: Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise Him, my Savior and my God. –Lisa Leonard, Lisa Leonard Designs”