Enjoying My Child

As of last Wednesday, I planned to spend 24 hours at the hospital with Alessandra and to move on with the thousand things I needed to do.  I'm a busy person.  My time is demanded here, there, and over there.  I'm always running.  Running.  Running.  Running.  Then the doctor called and told me the "initial order" was for 48 hours of monitoring and the order could be extended through 5 days. Mercy! How?! The thousand things will turn into three thousand things?! How can I drop everything for 5 days in the hospital?!

I checked into the hospital with Alessandra and reality hit pretty quickly.  Our room in the EMU - the Epilepsy Monitoring Unit - was not ready because someone else's testing had run long. Instead, we were checked into the Children's center.  I saw a child, around my nephews' age, walking down the hall using a walker needing the assistance of a few adults.  I saw a child wheeled down the hall in a wheelchair, hunched over, his right eye swollen shut with bruising.  Lord have mercy.  This isn't a waste of time.  This isn't an interruption in my plans.  This is my child's health. What could possibly be more important.  How can I help? What do I need to do?  Clear my calender.

My beautiful girl.  We will stay here as long as we need to.  I want a diagnosis. I want to help you. I need for you to be ok.  A stubbed toe makes a mama's heart skip a beat.  Here we are trying to rule out Infantile Spasms.  Nothing is more important right now.

Time seemed to slow down while we were in the hospital.  Alessandra did not appreciate the process of applying the electrodes.  Our room was set to freezing temperatures and it took a while for someone to finally tell me I could change the temperature.  She caught her first cold in the hospital and by the last day would wake up gasping for air.  She felt confined.  We carry her in our arms and walk around the house - we put her in the stroller and push her through the trails, we lay her in the living room & in her bedroom and let her roll around playing with her toys.  She was confined to such a small space.  She laughed so much less than usual.  The crib was made of metal (on which she struck her head several times), the floor was hard and piling up blankets to create a play area only made it a slightly more acceptable play area.  It felt like a hospital and not like home.

Alessandra in the Children's area:

I was furious when Alessandra woke up with a snotty face.  Her cheeks are pink from a low grade fever. She's never been sick and I couldn't believe she could be sick while going through this testing process.  She had enough to deal with without getting a cold.

Daddy, grandparents, aunties and I tried to keep her happy and entertained.  She is such a trooper.

I waited, waited, waited.  She'd had so many episodes at home but 48 hours into the hospital stay she hadn't had one at all.  I was frustrated and tired.  I felt like the hospital staff was rather unsympathetic about how sick and unhappy Alessandra was.  I was so ready to go home by Saturday evening.  I asked that the doctor be called in because I was ready to leave.  The hospital staff finally took us seriously and began efforts to keep us there. I prayed for patience, I reminded myself why we were there, and I tried to shove down the anger I felt about the fact that my precious girl was going through this ordeal.

Finally, Sunday at about 3:30 am she woke up.  It always takes me a minute to understand what is going on when I wake up in the middle of the night.  I looked over at her and knew something was wrong so I tried to get a look at her there in the dark and I pressed the emergency button. The hospital staff could see Alessandra through video monitoring so the room was instantly filled with people.  They saw her arch her back, they saw the vacant expression on her face, they tried to get her attention and get her to focus.  She wouldn't respond to anything.  Finally, someone else was seeing what I've seen alone in the middle of the night.  I wanted to hold her hands and talk to her to let her know I was there, like I always do when something happens, but I had to stand back and let her be observed and monitored.  

I let out a big sigh of relief.  It finally happened with an EEG on her head to tell me what it meant. After a minute or so, the nurse reached for her pacifier - she responded and focused - no one takes her paci!

We technically still don't have a diagnosis.  What we have is reassurance from the neurologists that we saw on Friday and Tuesday that though there were weird events which were observed by nurses and doctors, there were no signs of epileptic events or infantile spasms on the EEG. We've been told not to worry.  We've been told by the primary neurologist, who has her own three month old child, to enjoy our child.  I normally follow the doctor's advice anyhow, but this is a recommendation I have absolutely committed myself to.  She's so precious.  We can't take moments with her for granted. I come home every evening, tired or stressed as I may be, and commit to giving Alessandra the 100% that she deserves.  We don't have to be in crisis mode - she doesn't have to be sick - it can just be an ordinary day and she is just as deserving of my attention and my best.

Faith, Hope & Love

It's amazing to me how much faith I see in my loved ones.  I've received so many promises, declarations, and encouragements not to lose faith in the past week.  For some people God is harder to find in the difficult times and, in others, God's voice is amplified when it is needed the most.

I keep praying with each doctor visit, each test, each evening (when spasms usually happen), each step towards figuring out what is going on with our Baby Bear and figuring out appropriate treatment.  I hold on to hope that it is something with limited effects. I hold on to hope that it is something that will soon be resolved or that she will outgrow.  I hold on to the hope that no matter what types of challenges she faces and what the diagnosis turns out to be, she will continue to shine so brightly and bring Good into this world.

When Ryan and I were facing this alone, and even when I was just facing this with a few people, I spent so much time in tears just feeling overwhelmed with what was ahead.  Opening up about the situation, welcoming the support, and receiving the various forms of love expressed by our friends and family has had me in tears this week for a very different reason.  I love the well-wishes, doctor recommendations, offers to listen, the words of faith, the compliments on our parenting, the hugs, and every other bit of positive information, energy, and prayer that has been directed at our Alessandra this week.  It is an amazing blessing knowing that Alessandra is receiving love from so many people, all over the world, in so many different forms.  Thank you for offering to listen.  Thank you for keeping her in your thoughts. Thank you for praying for her.  Thank you for letting us know you are there. Thank you for praying for her doctors. Thank you for every bit of kindness.

Right now, we still do not have a diagnosis.

Alessandra has had blood tests, a short EEG (about 45 minutes) and a brain MRI.  Every test result has come back normal.  Although it is comforting to receive good news, it is still difficult to accept that we don't know what is causing this.  Seeing her go through these tests, seeing her be sedated, seeing her go through things that she doesn't understand and being unable to comfort her through parts of it has been exhausting and challenging.  She is my brave little lady.  She bounces back from each procedure.  She continues to be the wonderful girl she was a month ago before all this began.  She continues to learn new things every day.

We are not in the clear yet.  Waking at 3am to a child who is experiencing something scary that she doesn't understand is heart-wrenching.  Ryan and I really lucked out in that, for months, Alessandra has woken up at about 7:15am - after 10 or 11 hours of sleep - with a big smile on her face.  How did we go from that to waking at 3am to a child stiffening, shuddering, and then crying?  I know that she is strong and that I can be strong for her.  That doesn't mean that this is easy.

Alessandra ready for her EEG.  The procedure was completely painless and no sedation was necessary. We took her in sleep deprived and gave her the bottle so that she would sleep through most of the test.  I think the confusion when the electrodes were being applied was the most upsetting part - not any pain or discomfort:

Alessandra after her MRI.  She was still pretty limp here from the sedation.  As soon as she fully woke up she was fighting me and wouldn't accept bottle, paci, or any other of the usual forms of comfort.  It took about a good hour to get her calm after sedation.

We will continue to try to figure out what is wrong.  For now, we're tracking these episodes to try to see if there is a pattern.  We will need to do a 24 hour EEG and it will be helpful if we have some type of pattern to follow so that we can plan to complete that EEG in a window that captures one of her episodes.  Without a diagnosis, its hard to figure out what medicine or treatment to give her.  For now she takes high doses of B6, she is off solids and back to breast-milk with some formula, and we immediately put her to bed if she looks tired.  Essentially we are trying to limit/prevent the episodes and their damaging effects until we have more solid answer with a more solid treatment plan.

This is going to take additional testing.  It is going to take time.  I will continue to hope and believe for the best and I am so grateful for the various expressions of love that are lifting Alessandra up getting us through this.

Praying Without Ceasing

When I found out that I was pregnant, I was ecstatic.  I couldn't wait to hold my baby in my arms, I loved that I was finally going to be someone's mommy, but I was hormonal and emotional.  I was afraid Alessandra would come early, I was afraid there would be something wrong with her, I was afraid of the mystery surrounding being unable to see her.

When I finally saw Alessandra's perfectly pink round cheeks, met her big glistening eyes, and I heard that powerful beautiful cry I was so relieved. My little girl had finally arrived.  She was so beautiful, so healthy, so perfect. So many fears subsided.  The agony of childbirth was instantly displaced by the joy of holding my amazing little girl safely in my arms.

For six months, Alessandra measured big, blew through milestones, and we didn't have a care in the world. We've done our best to care for her, we don't take shortcuts in doing what is right on her behalf, and we take great pride in every one of her accomplishments.

When I first held Alessandra and cried those tears of relief, I didn't know that six months later I'd be praying every night for Alessandra's health.  The truth is that we don't know what the future holds.  Terrifying phrases like "poor prognosis" "devastating childhood epilepsy" and "severe physical and cognitive impairments" are now part of our reality.  I hope that these are fleeting worries but I accept that there are things that are simply beyond our control.  No matter how much we research, listen to advice, and devote ourselves to being the best parents we can be, we can't protect Alessandra from everything.

We don't have a diagnosis yet.

Hope remains that she will be with us in 40 years, healthy, sharp, and joyful as always.  But I'm not one to deny reality.  I want to be mentally prepared to handle whatever diagnosis we're given.  I've seen the bad moments.  I've held her during these terrifying episodes and felt entirely helpless.  I need to have considered the likely outcomes so that if I'm facing a challenging reality, I am not crushed by unreasonable denial about the situation.

No matter what further testing reveals, Ryan and I are fully devoted to ensuring that Alessandra meets her potential. We are so thankful that Alessandra has the benefit of an amazing family that loves both her and us. Our family has participated since day one in helping her have the best life possible and I am certain those relationships will only be strengthened through these challenging times.  No matter what the final diagnosis ends up being, I will remember my own words from my first blog post in 2013, "I know that if He blesses me with another child, I will be thankful for each day that he lets us have together" "Jesus has reminded me that I'm not supposed to live in fear.  I'm supposed to live with faith, hope, and love."

She is still my blessing.  She is still my greatest joy.  She is still my Eden.

His Sacrifice

I want what's best for her.  On the one hand I take pride in my efforts to be a good Mama, on the other I feel like she is deserving of so much more than my best.  No one person has made me feel both so great and so insufficient.

We bring our children into the world and they have their tiny little fingers wrapped around our hearts.  Our minds may be racing with 1,000 other thoughts but they are never forgotten and they never lose priority. Their cry makes us spring to our feet.  Their toothless smile washes away the troubles of the day.  They bring us more joy than any verdict, any sports car, and travel to an unfamiliar country.  Life's joys are still present but the pinnacle of joy - the height of love - it overshadows all other joys.

What wouldn't I give to protect her?  What wouldn't I sacrifice to see her succeed?  She has taught me so much about myself, about priorities, about what a blessing Ryan is to my life.  She is my daily lesson.

How can a parent look at their child and watch them suffer.  How can a parent suppress that overwhelming desire to protect.  How did my Jesus live 33 years on this earth - ridiculed, exiled, persecuted, his loved ones imprisoned and killed.  How did Mary watch as men broke the body of the perfect Son that she birthed into the world.  How is it that he had to utter "Abba Father" and yet the Lord didn't take the cup from Him.

Our God's love and mercy is incomprehensible.  What He did for us is incomprehensible.