Day 13 - How the mind works

Today was the first (week)day of family vacation and we ended up in the emergency room with our foster son after the bridge of his nose met the coffee table edge and it was not pretty. A three hour visit and the hard part (stitches) was done in the last 10 minutes.

Your mind does funny little things when it remembers. Sounds and smells are probably the most jarring for me.

A few months ago, we had friends whose newborn had to go to UVA briefly for an infection at about a week old. I ran food up to their room (down the hall from Jack’s room actually) and the dings of call bells, the beeps of monitors, the sliding of med drawers, and the scary ding for the medical response team. The smell of medical cleaner. It floods my brain with memories.

I felt a little bit of that today. The sound of the glass doors sliding open and shut. The heart monitor beeps. The sound of the portable x ray machine going by. It’s stuck in my brain and somewhere deep it connects the dots between the sound and the experiences we had with Jack.

It is probably a touch of PTSD but I’m no doctor and “what” it is called isn’t going to change the fact that it is. In one sense, it’s proof that the memories with Jack will last a while. In another sense, it’s heart breaking that sad and scary hospital sounds outline my memories with him.

I say this all the time but the good and the hard live intertwined. I can’t parse them out most of the time. It is never all good or all bad. It is both always. In this imperfect world, we have a perfect savior. We, imperfect sinners, get to be known and loved by a perfect, all knowing father. We experience pain and hurt with the hope of a future in heaven where we won’t shed anymore tears.

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Day 1 - July 12th

I have desired to write about Jack and our child rearing experiences in general for a while and I frequently push it off and it just simply isn't a "right now" priority. Starting today, on what would have been Jack's 2nd Birthday, I am going to write daily (or try to) for the next 35 days in remembrance of the 35 days he lived on this earth. It will likely be unedited, imperfect, and intentionally raw - partially for the sake of time (I work, do school and we have a toddler in foster care ok?!) and partially because that is the theme of our story, imperfection (made perfect through Christ). Today, I want to talk about birth. More specifically, medically complex birth. I get asked often if I had to have a mandatory c-section - thankfully no I did not. But I also did not expect to go into labor at 35 weeks and 5 days either and I am certain that is the worse option here. We came home from a week at the lake with Ike's family and as we are getting into bed Ike s

Day 2 - The NICU

The NICU is a place you are extremely grateful for but you also dread its existence. You are so thankful that your fragile baby has around the clock expert care but you also hate that your baby has to be there without you. And then when you are there you feel awkward - you’re the mother but his caretaker is the nurse - you have to ask permission or for help to hold the baby (so many lines/drains so it’s not easy to pick them up). It’s also just heartbreaking to see the other babies that have been there for weeks or even months. Jack’s isolette/crib/bed was next to a baby born at 24 weeks (on April 8 actually) and it was July 12… he was still tiny with a young mom who we witnessed have hard conversations about her capacity to care for such a tiny fragile baby. The baby on the other side was born via c section because his organs were on the outside of his belly (omphalocele) and he cried and cried and cried. (We actually had a mom bring a baby with this same diagnosis to our house in Ug

Day 6 - ECMO

After all that surgery talk, this seems like an appropriate time to talk about ECMO. ECMO stands for extracorporal membrane oxygenation - basically an exterior heart and lungs. Only a few hospitals in Virginia have trained teams and adequate machines to run ECMO. We learned a lot about it because there had to be someone in Jacks room 24 hours a day to monitor/run the machine. Like for bathroom breaks or lunch breaks - they had another trained ECMO person come and sit in the room while they took a break. We met almost every ECMO worker (a few didn’t do peds) and we talked with them a ton. They were present for many hard conversations with doctors, surgeons, nurses, chaplains, etc. They did things like get us lunch when the free lunch carts rolled by, bring us honey from home, update us on medical rounds that we missed. They felt like a second family. We wrote down almost all the nurses and ECMO techs Jack had - we wrote down 15 names for ECMO and I know we missed a few (like the night

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