(If you want to catch up on the previous posts in the Memoir of SCIDS, click here)
We finally moved out of our ICU home after three weeks. Our nurse gave our little girl a bath, put French braids in her hair and found a stroller to transfer her to a different floor.
We were actually moving.
It should’ve been reassuring, exciting even.
But we were leaving the team who had diligently cared for us these 3 weeks. The team who knew us, knew what we had been through. Now we would be under the care of a new team, and it just didn’t feel like it would be the same.
I think there’s always feelings of trepidation in the newness.
We got ‘settled’ in, learned a new routine, and met new staff, sharing our story with each one. It’s amazing how God works, how He gave me open doors to share testimony with those who cared for her. And most often it started with her name.
“Samara, that’s an interesting name”
Well, let me tell you, names can be powerful things. Samara means “God has protected.”
Unknown to us what the future would hold, we named her before she was born. I was bleeding after an incident during the pregnancy, and we thought we would lose her. Yet, God in His sovereignty, preserved her life then, just as He was doing now.
And each time someone mentioned her name, it was an invitation to share about the sovereign hand of God and His goodness toward us.
The next two weeks went by, and now it was becoming a greater struggle being away from home. My husband would come on the weekends with the kids so that we could all be together, Facetime seemed to work okay, but my heart was just tired and I just felt like it was time to go home. After all, the team kept saying it was just taking her longer to heal because she had a really bad pneumonia, but healing, I felt, we could continue doing in the comfort of our home.
So, the next morning I talked to the team during rounds, that being a nurse, I felt I could manage her oxygen, her tube feeds and her central line care, and that I wanted to do that at home now. They seemed to think it was an option, so they began the process for us to apply for home oxygen.
This meant we would meet with a respiratory specialist, who would need to approve of the plan. So, he came and visited us the next morning, listened to her breathing, repeated all her bloodwork and xrays…only to come back the next day and tell me that her xrays looked just as bad as when she was admitted, and that he could not send us home in her condition.
I was crushed.
So much longing for home, and now we had to stay. How can this be? He was still in the room talking to me, but I could hardly hear his words. Then, he mentioned that he wanted us to see immunology.
This was new.
I agreed to the plan, and as he left, I broke down and cried.
Then, as the Lord would know I need some comfort, a friend who worked in the Children’s hospital arrived at my room for a visit, a little stunned at my watering eyes and sobs. But bravely listened to me and gave me a hug.
I'm so thankful for God’s people. He puts them in the right place for the right time.
The plan moved forward, we saw the immunologist who ordered a ton of new blood tests and did a thorough assessment of our little one (who was now 9 months old). Then we waited for the next few days until the results would come in.
Being a good parent, I googled every type of immune deficiency there was, and discovered most of them were very rare, and the symptoms didn’t seem to match what her healthy six months of life looked like. In an odd, naive way I reassured myself that this didn’t fit.
Until 4:00 the next afternoon when the immunologist came into our room, bringing a chair so we could all sit down.
That’s never a good sign.
My husband had driven to the city that day, so he was spending the day with us.
Thank you God that he is here.
She explained to us a lot of details about the results of the blood tests. Essentially, our baby girl had no working immune system. At all.
Not what I expected.
She was missing an entire group of blood cells (her CD8 Tcells) which meant she had no ability to make antibodies against disease, and this condition would be fatal (as it almost had been) because of the inability of her body to fight disease.
The solution, she informed us, would be a bone marrow transplant, so that she could gain the blood cells she needed to have a healthy immune system.
Okay, I can do that, I’ll donate, no problem.
But the best case scenario would be a sibling match.
I remember hearing from my uncle what a painful procedure it was. Now I would need one of my other kids to go through it.
Lord, this seems too much!
Overwhelmed with information, shocked by the unexpectedness of it all, my mind was reeling, trying to process everything, while looking at my little girl, sitting contentedly in her bed.
"In my distress I called upon the Lord; to my God I cried for help. From his temple he heard my voice ad my cry reached his ears." (Psalm 18:6)
The chaos of the week had culminated in this defining moment. An answer to the question of what was really going on. The presence of the Lord has not gone away from me, He has heard my cries for help. I can see the people He has put in our path to get us here to this very day, to this very diagnosis.
"For it is you who light my lamp; the Lord my God lightens my darkness." (Psalm 18:28)
The anguish of my heart is heavy. The plan has changed in a big way. No longer are my eyes fixed on going home, they are focused on what needs to happen today and tomorrow.
"The Lord is my rock and my fortress and my deliverer, my God, my rock in whom I take refuge, my shield, and the horn of my salvation, my stronghold." (Psalm 18:2)
Everything moved so quickly that evening. We met the transplant doctor, the respiratory specialist came again, we were moved to a private room for isolation. Plans were put in motion for a bronchoscopy the next day. We started making arrangements for our other kids to come to the city the next morning for blood tests, which we all needed to have done. Would either of them be a match for transplant?
We didn't get much sleep. So many questions, so much information.
"I love you, O Lord, my strength." (Psalm 18:1)
If this is all I know, it is enough. His strength will see us through.
~To catch up on the other parts of this memoir, click here.
~For ideas how to help support families who have a children in hospital, read my article here.