Little Lion — 6

Posted on by ree pashley 3 Comments

Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5

9. Thankful

If I am being honest, I wasn’t soaking in gratitude when we first received Little Lion’s diagnosis.
It was overwhelming: the emergency injections and the long list of symptoms to look for in case of adrenal crisis or low blood sugar, circumstances that warranted an emergency room visit.
All the new information was scary.

I wondered if he would be able to live a normal life because of his medical needs. Summer camp? School trips without a school nurse? Could we go camping as a family?
I didn’t think I would ever have a handle on his steroids schedule (sometimes every 8 hours, sometimes every 6 hours, an increase based on x y and z, with an added 4 am dose), not to mention his temporary liver medicine and all added vitamins.

And, I missed our family in Tanzania. I struggled with the necessary wait for Little Lion to be stable before we returned home.

I also wanted to sit down and ask God why our little boy was not born absolutely healthy.
I took all the vitamins and avoided anything even remotely suggested to be dangerous during pregnancy.
Why did he have a health condition, when I was so very careful?
What more could I have done for Little Lion to be okay?
I didn’t blame myself, but I certainly wanted some sort of answer from God.

And then, some months after we had returned home to Arusha, I was alone in the car, driving home in the early evening and it hit me: Little Lion could have died.
I had considered this every day in the hospital, yes. But it was in a terrified way, never in a grateful awareness.
Little Lion could have died. But he didn’t.

And my questions to God, my struggle with his health condition are valid and permitted, but that should not be an obstacle to being overjoyed that my son is alive.
I can ask and I can wonder, but I should also rejoice.

A foreign thankfulness started to erupt in my heart and I began crying, while smiling and laughing (and slightly struggling to drive).

Again, the memories washed over me, Little Lion turning blue, his weak body waking up from surgery, crying in hunger as he fasted for a biopsy. And the recollections were for the first time joyful because Little Lion lived!
All of the fear, every moment watching my son in pain, were washed in new light – of how serious it all was. That truly my son is not just ‘lucky’ to be alive, he is a walking miracle.
He is alive, not by chance, but because God saved him again, and again, and again. More times than I will probably ever even know.

Perhaps that’s the second re-wiring my brain has undergone since Little Lion’s diagnosis and journey to heath: life is the most beautiful, sacred gift.
Apart from abilities, without accounting for talents or achievements, even to exist is remarkable.

It is an incredible thing just to ‘be’ in this world.
To breathe, whether assisted with oxygen or independently through able lungs.
To grow, naturally or because of artificial steroids through regular injections.
To experience the world, either because you go out and taste it or because dedicated caregivers bring it to your fingertips.
To be loved, not for what you can do but for who you are.

To be in this frightening, splendid planet where nothing is certain, there is very real pain and everything can go wrong. But where also, there are sunrises, unexpected kindness, and most definitely there are miracles.

And therefore, it should be celebrated.

So, on Saturday we will eat banana cake and sing very loudly and very off-key. We will dance and cheer as the baby makes a horrible mess of mango puree and sugar-free cake. We will celebrate the simple, amazing reality that Little Lion is alive.

Happy Birthday, my love.
Life has never been the same.

The End

Little Lion — 5

Posted on by ree pashley 1 Comment

Chapter 1
Chapter 2
Chapter 3
Chapter 4

7. An Answer

The diagnosis was confirmed through an MRI.
Trauma re-wires the human brain, so that the neurological pathways are altered. Basically it changes us, even in very tiny ways that are not obvious to others.
For example: whenever I find a onesie that has no metal – no metal snaps, no metal buttons, nothing metal, I immediately think: Little Lion could wear this for an MRI!
Despite that he doesn’t need any more MRIs, or isn’t going for any new procedures.
It is the new path my brain jumps to: no metal = good for MRI.
And I’m a little awkwardly happy that Little Lion wouldn’t have to go in naked, swaddled up in his blanket.
Which is actually what he DID have to do, because I was distracted and didn’t remember that your body/clothes cannot have any metal for an MRI.

Poor kid. And I always feel bad about that: little ear plugs taped on his ears, being swaddled at tight as possible so he couldn’t wiggle during the exam and stripped down to only a diaper because your silly mother forgot about the metal snaps on your clothes.
That event sums up so much of our time in the hospital; the picture of Little Lion struggling, uncomfortable and crying, taken from my arms by a nurse for yet another test, how helpless and disordered I was, how much I learned and how I felt powerless and encouraged at the same time.

And then, we got the diagnosis.
It’s a strange sort of relief when a doctor announces they have insight into your little one’s condition.
Relief, because now treatment can begin!
But a sorrow, too, because they’ve uncovered an illness, a disease, disorder, condition, etc.
It is two-sided: you need to know, you are desperate to know, but it can also be devastating to know.

Little Lion has pan-hypopituitarism. Basically, his pituitary gland (the control center for hormones in the body) isn’t working properly. That means that his body is deficient in many of his hormones.

Little Lion’s condition is often-life long and has no cure. But it is manageable, and there is treatment.

8. Prognosis

Little Lion will be on steroids until God completely heals him, fixes the tiny pituitary gland back behind his eyes.
The lack of stress hormone was the key, his liver was shutting down because he needed cortisol. He had apnea (the episodes where he struggled to breathe and turned blue-ish) because of low-blood sugar related to cortisol deficiency.
The first doctor, the obstetrician in Tanzania, who said he had low blood sugar and administered a sugar solution probably saved Little Lion’s life that night.
First he pushed him into the world, then he kept him alive his first night in the world.
At the NICU all investigations were regarding lungs and breathing. Turns out, it actually was blood sugar, low stress.

Little Lion showed immediate improvement on steroids. So much so, that in two days we were released from the hospital.
It was like a corset being unlaced from my waist – I could breathe, relax my shoulders, I could collapse a little bit.
We were sent with boxes and bottles of steroids, medicine and vitamins. And the baby swallowed them, and drank his milk, and slept in peace.

My mother and sister flew out from America to visit us. They brought me homemade chocolate chip cookies and toys for Little Lion. They cuddled him and got me outside for a little while every day.
It was uplifting to be close to my family, especially during a cold winter in a strange city.

After another 6 weeks, and a few follow-up appointments, it was determined that Little Lion’s liver was improving, his anemia gone, and he was stable on steroids.
I ordered 2 pill crushers, a travel first-aid pouch and organized his many steroids in the luggage: at last, we were going home!

Our carry-on luggage was almost entirely his vitamins and steroids, his diaper bag stuffed to exploding with clothes, baby formula and our passports. I looked ridiculous with all the bags and the baby, but we managed to arrive safely back in Tanzania.
Little Lion hadn’t grown very much since when we left, but he was stronger, eating better and was no longer yellow.

It was a thousand times more difficult than I anticipated, traveling alone with a sick baby to a strange country for medical care. Not like we had a ton of options, however.
But, in the end we discovered Little Lion’s health condition. And he’s going to be okay.
We still have to manage his steroids, and getting growth hormones was an uphill battle for nearly half a year. Every 3 months we travel 5 hours to see a specialist doctor, and I am way too paranoid about his growth rate and compare him in size to every baby I come across.
But, he laughs all the time and he is walking. He’s a happy baby. He loves to eat bananas and mangoes. And while sometimes I still struggle to give him his nightly injection, every day all of it gets easier and easier. And he’s going to be okay.
And he is healthy, and he is growing. He’s adored by his brothers and sisters. He’s possibly the most loved baby in the world.

And he’s going to be okay.