Just when you think everything is falling into place. The house is all unpacked, Adam is settled into his new job, Zion is loving his new school- he’s even riding the bus now, we are making new friends, and spending every second we can get to explore our new found love for this state.
We’re evolving, our dreams are coming true, and Lincoln’s skin is doing fantastic. I’m genuinely happy.
Then just like that, the rug gets ripped right from under you.
Today started out at 4am for us. We got up and drove to a Children’s Hospital in Bellevue- just outside of Seattle. It was nice to have the 2 hours of quiet conversation with Adam.
I remember the first time we had to put Lincoln under, even though it was just an ear cleaning, I was a mess. This time around I took it like a champ. I got to hold him as they put him to sleep and I kissed him goodbye, to know that I would see him in 45 minutes.
Adam and I went and had a coffee date as we knew Lincoln was in good hands. He did great and it was time to head to our next stop. Children’s Seattle, we had an hour to pass time so we headed to downtown Seattle. It was beautiful out and Lincoln could use some fresh air. As we were walking we passed by a homeless veteran who I could tell was in immense pain physically and emotionally, I gave him a couple bucks and a wave rushed over me to pray over him, I held his hands “I pray that you find comfort in the Almighty, that you know you are dearly loved and He will always be at your right hand, that nothing is impossible for Him. I pray that you are blessed and that hope may touch your heart and spirit and that the kindness of others will bring you life, I pray that your pain may be eased by the healing hands of God. Amen”
Little did I know that God was also using that prayer for me? I haven’t been as close to him as I’d like to these last couple of months, he used a stranger to talk to me today.
I was giddy as we walked back to the Van. In a good mood, loving the time with Adam.
We were in the room waiting to talk over the results with the Neurosurgeon.
He walked in and introduced himself, and right then I realized I hadn’t been worried about the results. Until now. As he looked at me, before even speaking a word I realized they weren’t good. My heart sank.
In a matter of seconds memories started coming back, my heart that was starting to fill full again began to break. The day Lincoln was born still marks one of the hardest of my life, all the information coming at me and the lack of. The smell of the NICU swarmed my nose. I didn’t want to do this again, I don’t want to see my baby in pain.
The scans show a large cyst, a Chiari malformation, and obstructive hydrocephalus.
I knew about the cyst and the Chiari malformation.
We never got to see the MRI when we were in Colorado, so seeing them today was very shocking.
The cyst is putting pressure on the brain, causing the Chiari and obstructing the flow of spinal fluid, ideally draining the cyst and burning down the Chiari will open up the fluid space in the back of the head to allow normal CSF flow. Chronic added pressure to the brain can affect developmental milestones.
“I’m very conservative when it comes to brain surgery, I’m not the type to just jump to it like other doctors, but with all the pressure your son has on his cerebellum from the cyst, I highly recommend you guys going through with it.”
The smells of the NICU come flooding through my nose again.
How long is recovery? “He will need to stay in the hospital for 5 days following, and we will monitor him closely for the 6 weeks following, and then MRIs to watch the development and make sure the cyst doesn’t come back and see if we need to do another surgery and put in the permanent shunt.”
If surgery doesn’t fully relieve the pressure, a shunt would be the next step. They will monitor him after the surgery to see if a shunt is needed; it could take weeks to months.
The surgery would involve opening up the back of the brain, through cutting a small flap of bone, going through the dura, draining the cyst and reducing the size of the Chiari, ultimately opening up the brain space for the moment of fluid. The risks are spinal fluid leaks, blood loss, stroke, infection, damaging the brain steam and/or cord.
Adam and I continually make eye contact and fight the tears.
Lincoln is scheduled for Surgery on May 16th. 11 days.
As I sat in the bathroom stall crying I was reminded that God has us on this journey for a reason. Children’s Hospital Seattle is rated very high in the country for Neurosurgery. We didn’t know that before we left Colorado.
We could use your prayers big time right now. Prayers for peace and comfort for our whole family. Please be praying for the surgeons, it’s a 4 doctor operation. Seriously pray for them.
Its never easy asking for help financially. Adam will need to take time off of work, we will be flying in Kema to help with the kids, the little things add up like my food for the 5 days at the hospital and the gas to Seattle and back the next couple of months. Thank you for your continued support in Lincolns Journey. https://www.gofundme.com/lovinglincoln
My favorite author Ann Voskamp always speaks to me, she doesn’t know it but she does.
…fear can’t get to us, panic can’t upend us, worry can’t undo us — because when we exhale, we can hear You like a warm breath:
“I am with you. There’s no need to fear the big things, the little things, anything, for I’m your God. I’ll give you strength when the weight of it all wears you down, I’ll help you when you’re hurting, when everyone’s hurting, I’ll hold you steady when everything wildly tilts, I’ll keep a firm grip on you — so you can rest tonight, because you are held.”
And all the people held on to each other because they belonged to each other and they all beheld a Grace that held them all.
In the name of Jesus, the only One who ever loved us to death and back to the real & forever life,