Some Flowers Grow Well in the Shadows

The Sunshine, fresh air, and warmth all feel right together.  If I added the words joy, hope, and laughter, no one would question their natural place in this list.  What if I wanted to tag grief onto the end?  How about fear?  No.  We don’t picture ourselves in a sun-kissed spring garden weeping or worried.  How about under a weeping willow, alone?  Yes, it’s ok to feel sorrow there.  However, anguish and despair are only allowed in absolute solitude.

As a parent of a child with disabilities and complex medical needs, I feel all of these emotions almost daily.  Whether I am changing my baby’s shirt or cleaning his bottom, I wonder if I will be doing this for the rest of our lives. When I gently caress his face and wipe off the spaghetti sauce, I ache with fear that he will never do this on his own. When Tug was a little over a year old, I made the following Facebook post about a harmless comment that brought the painful truth into sharper focus.

While walking into Church yesterday, a lady said about Winston, “wow, he’s growing so fast! I bet he’ll be walking soon.” I gave a smiling non-commital response.
She meant well. She cares about my boy. I know these things.
But, he isn’t growing fast and will definitely NOT walk soon. We’re still working on sitting and crawling. He will stand someday. He will walk someday. Just not soon.

In this post, I publically state my tentative hope that my baby boy will stand and walk someday. To the world, this is shared as fact because people want sunshine and cheer. And, because I am called to spread joy and love, not despair.  The truth? I don’t know if he will walk someday. Three weeks ago, I wasn’t sure he’d stand. But, a tiny ray of sunshine peeks through my solitude to feed my hope. A hope that scares me more than Tug’s future.

Hope can be crushed. I had confidently hoped for a healthy and whole child. Right after his birth, I prayed for a miracle.  Yes, I see many miracles when I look back on those difficult days, but the sunshine barely shines through my personal shadow of fear and pain.  My heart is already in pieces. One truthful sentence was all it took. “With this level of [brain] damage, it is unlikely he will have no problems.” Crush.  In one day, I learned that my child may never walk, crawl or even stand. The neurologist said that Tug could have significant cognitive delays as well. Darkness.  A shadow reaches over my shattered heart. That shadow is still with me and may never completely leave.

Truth can crush, but it also heals.  Mist and shadow can be burned away by the warmth of the sun. Each time Tug figures out a new skill, a bit more hope warms my heart. Every milestone met melts a few broken pieces together again. Two days ago, my baby boy stood while holding my thumbs.  He stood! Winston called the sun to break through a bit more when he waved goodbye clearly for the very first time.  He’s over 15 months old and these milestones are late. Or, as the doctors would say, delayed.  I have yet to quiet the voice that reminds me of where he should be.

The voice of real Normal deepens the shadows. The little guy at the pool who is toddling around in his floaties is adorable, yet so very hard to watch. My friend’s baby who is already coloring brings our Not Normal into clearer focus as Tug is still mastering grasping.  This is My Normal. My Normal is in this shadow. My boy is growing and blooming under this willow tree.  This works for him as he develops and learns at his pace. Tug brings life and beauty to our little garden in the shade, and I am learning to see the beauty in the shadows.

As we sit under our willow tree and focus on today, we experience hope and joy… in the little things. The sunshine pierces the shadows and hope penetrates the sorrow.

 

I originally experienced this heartwrenching video on the website, Popsugar. I linked the YouTube version of it here for readers to see this painful path. My road is full of worry and heartache, but there are many moms out there who struggle with much more.  A mother’s strength is truly just enough.

 

flower picture credit: sunset.com in the “20 colorful plants for shade gardens” article.

One Year After Brain Surgery

This video is of Winston (Tug) just after his first brain surgery – one year ago. He was about 3 months old.

Whenever you have a child with a difficult start in life, it seems that there are more chances for that child to need more medical care.  To ensure Tug stayed healthy and was growing well, a nurse and a physical therapist measured, supported, and loved my Tug. A Registered Nurse visited our home to check on this fragile little guy weekly. After almost two months at home, Tug’s therapist observed that his soft spot was getting larger. He also seemed to have developed soft spots on the sides of his head. My little squishy baby had been home from the NICU for a little over two months, but all was not well. Winston (Tug) was diagnosed with Hydrocephalus on June 5th, 2016.

Hydrocephalus is pressure on the brain caused by a build up of Cerebral Spinal Fluid (CSF).  There is no cure. Very rarely, Hydrocephalus can resolve on its own.  This brain disorder has so many possible causes that trying to treat the causes isn’t the focus yet. The neurologists and neurosurgeons focus on eliminating the most life threatening and damaging aspect of the disease – CSF pressure.

Pressure in and around the brain can be catastrophic.  The least dangerous problems are daily horrific headaches, dizziness, and lethargy. These can occur without treatment or if the treatment is not working properly.  If pressure continues to build, it causes the ventricles in the brain to expand.  Water doesn’t compress, but brain matter will. High CSF pressure will often limit circulation to the optic nerves – causing permanent vision damage or blindness.  Long-term and/or extreme pressure causes head enlargement in infants and developmental disabilities. Those with no access to treatment usually die.

When properly managed, those with Hydrocephalus are able to lead productive and happy lives. The best ways to manage Hydrocephalus, currently, are either ETV (Endoscopic Third Ventriculostomy) or the insertion of a CSF shunt into the person’s brain.  Yes, the safest and best treatments are both brain surgeries.

We met Tug’s neurologist for the first time on June 4th, 2016. He was concerned with Tug’s significant vision delay and agreed that his head growth was measuring abnormally fast. He urged me to see the pediatric neurosurgeon, Dr. Cherney.  The next day, we met The Amazing Dr. Cherney and the nurse practitioner, Mitzy.  They both took great amounts of time checking on my boy.  Within an hour of our appointment, Tug went in for a head ultrasound. We returned to Dr. Cherny’s office once the procedure was complete. Our Pediatric Specialty Center is across the sidewalk from the hospital, so it is relatively easy to walk back and forth.

Mitzy immediately read Tug’s results and explained that Tug had something called Hydrocephalus, or water on the brain. She strongly recommended that he have surgery in the next few days to address it. I felt overwhelmed and a little confused. She had explained all of the complications and permanent damage that Hydrocephalus can cause.  Why was she giving me the option to wait and think about it?  Later, I realized it was her way to help me feel like I had some control over what was happening to my baby. At the time, I told her that sooner seemed best and asked if there was an opening that afternoon or the next morning. She assured me that the next morning would be safe and good for Winston. (She didn’t know I called him Tug)

Tug and I arrived at the hospital the next morning around 6 am. My husband, Paul, needed to take care of our older boy at home.  Our cousin, Heather, was there to meet me to make sure I wasn’t alone. Countless doctors, nurses, information, and questions flew through the pre-op room and my brain. I remember very little of that day, that week actually. What I do remember, is that Heather took care of me.  She asked questions and made sure we knew what was going on. I was blessed to have her level-head and love with me that day.

At around 8 am, the team began to wheel my baby away from me and down a hall – to a room I could not enter. I realized I hadn’t hugged or kissed him goodbye.  What if…?  Bad things happen, right? My baby was about to have brain surgery. I chased them down the hall for about ten feet. The nurses sympathetically stepped aside to allow me room for one last kiss, one last caress, one last “I love you.”  I watched them go until the blur of my baby’s hospital bed turned the corner and was gone.

The following hours felt like days of misty worry and watery hope. After what felt like a century later, a nurse found us to let us know that all had gone well and Dr. Cherny was closing up. She assured us not to worry if it took a while because Dr. Cherny was a perfectionist and always took longer than any other doctor.  It was wonderful to hear that the man in charge of drilling a hole into my child was so particular. I could breathe again. Eventually, they called me into the post-op room so I could snuggle and feed my patched up little guy.

After a few measurements were taken, the nurses helped place Winston (Tug) Augustus Smith into my waiting arms and everything was OK again. My heart was home.

 

An Account of My Lost Wanderings…On the Way to the Delivery Room

This post contains content related to childbirth. Fair warning.

Many of you have been inside your local hospital so you can picture the main entrance of ours here in Boise, ID.  Our St. Luke’s Medical Center is about thirty minutes from our home. That drive is usually smooth and uneventful. Unless you’re in a car with a woman in active labor.

My labor began rather abruptly on a typical Wednesday morning. Our first born, Tyler, was getting dressed and supposedly brushing his teeth while I prepared his breakfast and sack lunch for the day. I checked on him every fourteen seconds, like most moms of five-year-olds, as I ensured his backpack contained all he needed for the day.  He bounded downstairs at least sixty times – thinking he was completely ready – only to be sent back up for the right socks, or his tiny little tie. See, Tyler attends kindergarten at a private school about a mile from our home and they have “full dress” uniform day on Wednesdays.

Finally, Tyler appeared in the living room with is black dress shoes, blue dress shirt, tie, and special sweater. The perfect picture of a tiny version of the man he will someday grow to be.  Complete with the crazy cowlick-induced bedhead.  Oh well. No time for the sixty-first trip upstairs. It’ll have to do.  My boy, with his wacky hair, sat down to eat his cereal. I prayed that he wouldn’t dribble milk onto his only clean school sweater.

As I proudly watched Tyler not spilling his cereal, I felt a very strong cramp in my abdomen and felt like I peed my pants.  Ok, many of you who’ve done this before already know what was happening.  I did not. Tyler’s labor never progressed, so this was new to me.

Anyway, I thought I’d had some bladder malfunction and left to empty it. As all humans do. Once this task was complete, I began to head back out to check on my unsupervised five-year-old.  He’d been alone for about 5 minutes and anything could have happened. Then, another painful cramp grabbed me.  I leaked a little again! After this, I woke up Paul to inform him that I was in pain and that he would need to be the school transportation for the morning. Having downloaded a contraction app weeks before to play with, I opened my phone and input a moderate contraction. Six minutes and twelve seconds later, the pain and leaking attacked me again. I called my OBGYN’s office.

My OB, Dr. Dirk Carlson, happened to be the doctor on call at 7:20 am. I described my condition and related that all four (another contraction came and went while I waited on the phone) of these pains had been 5-6 minutes apart and all were accompanied by leaking.  He said, “Well, you’d better come in. I think we’re gonna have a baby today.” When Paul returned from driving Tyler to school, I relayed my surprise that I was in labor.

Paul’s reaction? “Really?  That’s what Carlson said?  OK, I’ll take a quick shower and we can go.”  What?  OK…

A few contractions later, he was ready.  We gathered a few necessities and left.  I know what you’re thinking – You hadn’t packed for the hospital yet? Why not!  I was due one and a half months from now. We hadn’t preregistered at the hospital either. The drive to the hospital had always seemed fairly short. Not this Wednesday. Thirty minutes can be broken down into six or more increasingly painful contractions.

Halfway to the hospital, I could barely carry on a conversation with Paul. We decided that I needed to eat before we got there because they starve pregnant women. One Breakfast Burger from Carl’s Jr. and some ice water and we were on our way again. I was still tracking my contractions during the drive. They had become so painful, that I corrected my previous contractions to adjust my pain scale – the first ones were now 2s instead of 5s.

We arrived at the hospital fed and watered. Paul asked me where to park. I told him to just pull up front and drop me off.  This way, my walk would be shorter and he could park the car. I was pretty slow at this point and knew he’d catch up soon. Our hospital allows short term parking at the entrance for times like this, but since we hadn’t registered yet we didn’t know.

Let me just say, I despise revolving doors. I had to walk through one to enter the hospital and it kept stopping because either my belly or my bottom got too close to the doors.  Seriously?  I finally made it inside after having another contraction and leaking a little while in the pregnant lady trap, otherwise known as a revolving door. Right away I saw the information desk and a plethora of wheelchairs. Waddling is a slow form of travel.

Once at the desk, I waited through another contraction and leaked a little. The older man in front of me greeted me and the following conversation commenced.

Kind Man:  May I help you?

Pregnant Lady: I think I’m in labor.

Kind Man: Do you need a wheelchair?

Overconfident Pregnant Lady: No.

Befuddled Kind Man: Uh… OK… Do you know where you’re going?

Pregnant Lady: Ow! I just need to lean on your desk for a minute… Is the Labor and Delivery on the second floor?

Concerned Kind Man: Yes.

This gentleman proceeded to give me directions and then watched me waddle away from him. Alone. On my own.  On the elevator, I leaked a bit more while in pain and then got off on the correct floor.  That was all I did correctly for the next 15-20 minutes.

Later, I found out that my initial left turn was what lead my astray. I wandered down hall after hall. All the while contracting about every four minutes and leaking a bit each time. There were no signs of where I should be, so I kept walking and hoping a sign or a person would grace my path. Most of these halls seemed abandoned. I wondered why our hospital had so many empty rooms.

Eventually, I found a nurses’ station and saw one lonely young nurse doing some filing. She looked up, obviously shocked to see me. I paused to struggle through another contraction while leaning on her counter. Yes, I was still leaking. Now her shock was mixed with some concern. I told her, “I think I’m in labor” and she just stared at me for a minute.  Poor girl, I wasn’t supposed to be back there and she didn’t know what to do with this largely pregnant woman.

She finally asked if I needed Labor and Delivery.  I told her that I did and confessed that I had been offered a wheelchair and refused. Not realizing that I inadvertently refused all help from the kind people downstairs. No, I hadn’t “needed” a wheelchair, but would have gladly accepted a guide.  The nurse informed me that she didn’t know how to get me to the check-in desk from where we were. She felt I needed to be seen soon and led me down a hidden magical path directly to the Labor and Delivery nurses’ station.

More shocked nurses. I was, again, not where I was supposed to be. I apologized, had a contraction, leaked a little, and explained that I’d been wandering lost in the bowels of the hospital for what felt like hours.  At this point, I was fairly certain I was in labor. True to form, they jumped up and got me settled right away. They also found my worried husband at the check-in area as he tried to determine where is wandering wife could have waddled off to.

The next nurse I met asked me how I was doing.  I said, “I think I’m in labor.”  She replied, “I think you might be right.”

How did Winston become “Tug”?

Winston is an adorable and strong male name.  We love it.  Its uniqueness fits our special child.   His path through this life has already been wrought with hardship and pain. He’s undergone three significant surgeries and numerous tests big and small. My Winston takes 2 daily medications – one will be lifelong and has a shunt into his brain to treat hydrocephalus (hydro). Since hydro is known to cause chronic headaches and need for future brain surgeries, we know that his medical battles are not over.  His little body has already demonstrated his fortitude. It is my assignment as his mother to help him develop a character and faith to carry him through the rest of his time here on Earth.

His full name is Winston Augustus. It was the strongest name we found. Winston now needs to grow into the ‘bigness” of it.  But, when he was born, he surprised us.  We hadn’t found this name yet.  Augustus was on my list of possible middle names because I love the mouse, Gus Gus, from Cinderella.  I thought we had at least a month until our baby would need a name. Our first, Tyler Remington, was nearly two weeks late to enter this world.  My husband, Paul, hadn’t even set up the crib yet and the baby shower was scheduled for a month ahead of Winston’s due date. Ready we were not.

Ready or not, here he was.  My wrinkled little 5.5-pound preemie. The doctors had taken him directly to the Neonatal Intensive Care Unit (NICU) at the best hospital in our area for high-risk babies.  Another miracle, the best hospital in the area is where I delivered and is only 30 minutes from our home. My medical team was able to wheel my surgical bed into the NICU so I could see and touch my baby before I was settled into my own room.  The NICU nurse assigned to my baby’s care asked if we had a name.  In my drugged state, told her no. I told her that I called him Tug in my heart as he grew in my tummy. She assured me it was adorable and that they would take care of him, love him, and call him Tug.

Why Tug?  Well, it’s really quite simple. My pet name for Tyler is Bug. No one really uses it except me. But, I worried that I would accidentally refer to the new baby as Bug. Would that hurt or offend his 5-year-old, only child, brother? I wanted to instill love, not jealousy between my boys.   So I pondered and eventually fell on Tug. It felt warm and right.

As I carefully touched my darling little one, my heart said hello to Tug, my love.  Paul and I touched him gently, said a little prayer, and allowed the nurses to roll me down the hall.  They set me up in the antepartum ward to ensure I could visit our Tug easily and often.

After a few hugs from my parents, Paul and I were alone in my room.  It was yet to sink in the magnitude of the events of the morning.  I ordered lunch, drank some water, and looked at my sweet husband. Eventually, we decided to try to come up with a name. We had discussed this endlessly at home and in the car over the last few months with no results.  In my hospital room, Paul mentioned Winston. This had taken approximately 15 minutes.  I looked it up to ensure it was not ever a popular name and that we would choose the traditional spelling.  Then it was decided.  We tacked on Augustus to provide an easy nickname – Gus.

Little did we know that “Tug” was already beginning to stick. The nurses had written Tug on his nameplate attached to his bed. The Doctors had added Tug to the charts as this baby’s moniker.  And, he was already Tug to me – in my heart.

 

 

Next: A humorous account of my lost wanderings through the hospital – while in labor.

Where to Begin

As with most stories, the traditional place to begin is at the start. So, here goes.

A little over 15 months ago, my family and I joyfully imagined this healthy baby boy soon to join our tribe. Everyone anxiously awaited his expected arrival in early April. My baby didn’t wait until April; he couldn’t even wait until March. He was born on the 24th of February – exactly six weeks early. If only that were his only obstacle to overcome.

My contractions began as I prepared my other son, Tyler, for Kindergarten. Later, I will write the story of that portion of the morning and link it here. When I arrived at the hospital, I was confirmed to be in active labor. My confident and capable OBGYN, Dr. Dirk Carlson, discovered my little early bird was completely in the breach position and reasoned that our plan for a VBAC was out of the question. Looking back now, I see this as one of many miracles that occurred during a heartbreaking day.

Dr. Carlson performed a smooth Cesarean Section surgery to help us welcome my boy into the world within a few hours of my first waddles into the maternity ward. My husband was in the room with me. As were numerous doctors, specialists, and nurses. This, apparently, is standard procedure at a teaching hospital when a baby decides to be born so early. There were at least twenty people waiting around ready to do all in their power to protect my baby and me. I remember feeling anxious, but happy and content also. As Dr. Carlson pulled my boy into this world, he exclaimed that he was breathing well and showed my a wrinkled little boy over the blue curtain. The neonatologists checked his heart and lungs and said he was just fine. But he wasn’t.

Within minutes of hearing that his vital organs seemed to be doing their jobs, my OB told us, “his umbilical cord looks a bit different and we need to check it out.” I thought, “OK, that doesn’t sound too bad.” Then more disturbing news came our way. “He’s rather bruised,” the doctor said. Paul still vividly remembers seeing the bruises form as my OB was gently holding our baby. “Petechiae is visible on his skin, we need to take care of him right now,” they said. As I was patched up, we were accosted with more scary information. Our darling baby boy had something called omphalocele and he needed emergency surgery to address it. However, a blood test showed he had dangerously low platelet counts and could bleed out if they tried. He could bleed to death internally even if they did nothing.

For those of you who are not medical people, platelets are what the body uses to clot blood. They keep our cuts from bleeding continuously – they are vitally important. Crucial to survival. Infants are expected to have 150-500 thousand platelets per sample. my boy? He had four thousand. That’s basically none. Another miracle blessed my boy as soon as his low platelets were discovered – one of the neonatologists had an idea of what this might be and knew what to do. They gave my tiny baby 3 platelet transfusions within his first day of life and a few infusions of IVIG to help him keep the platelets he already had. It took the NICU team two days to get his counts up high enough to fix his omphalocele.

What is omphalocele? It’s an abdominal wall disorder that usually presents itself with a portion of the intestines not being where they should be. Some cases are disastrous because large portions of the intestines can die by being exposed in the amniotic sac. My baby’s intestines were not too bad. We add another miracle to the list because only a small portion of his small intestine was out of place. And, it was still contained inside his umbilical cord, thus protecting it from exposure and decay. He was born on Wednesday morning and the superb doctors fixed his tummy on Friday.

During the time between his birth and Friday, the hours and minutes were rough. To avoid jostling his intestines, we were told not to hold him. I couldn’t even feed him because they needed to keep his digestive system dormant until after the surgery. Then, more news and more questions came our way. Because of the low platelet counts, the doctors performed a head ultrasound. We were doing surprisingly well until then. This was all terrifying and heart-wrenching, but it was fixable. No lasting damage.

My already broken heart was crushed by the results of the ultrasound. This beautiful baby boy, MY baby, had significant damage to his brain. The bleeds rated a grade 3 on a 4 point scale. An MRI revealed two bleeds had destroyed two portions of his brain. How much of his brain? I don’t know (even today). I’m afraid of the answer so I refuse to ask the question. The pediatric neurologist gravely informed us that “he is unlikely to have no problems.” And that this damage could manifest as a small physical disability/limitation or as something much more life altering, or anything in between. How does a person process that?

Just a few days earlier, we’d been expecting a perfect little boy. Our biggest worries were that we hadn’t fixed up the nursery yet, and still had not decided on a name. Oh! How I wished those had stayed my main concerns.

Look forward to the next post: Where did the name Tug come from?