Shickel Family

That phrase makes me roll my eyes sometimes. Joy in the in between. It feels like a quick way to brush off the troubles you are living amidst and force yourself to just "be happy" instead.  But, I think I am missing some of the sentiment of the phrase when I let my jaded heart get in the way.  When I look back at pictures from the days between Jack's second surgery and when his soul left this earth, I do see joy. I see the faces of my family members who came to see him for the first time. Like my grandparents meeting their first great grandchild. My friends coming to swoon over him even with all of his tubes and unable to hold him. I see photos of us with Jack, holding his hand, enjoying every moment we had with him knowing it was a gift, a miracle.  There was pain and sorrow during those days, of course. But essentially joy in the in between is life. We are living right now in the "not yet." We live among pain and sorrow daily (often not as grave in severity...

 A few housekeeping things - I often write in the evenings and I think I ramble on sometimes from tiredness and poor focus. Second, I want to tell a cohesive story about Jack’s life but I tend to intertwine it with our current everyday life. Sorry if that means it comes out in choppy or scattered story telling.  I have struggled to feel encouraged by the Lord lately to be frank. I’m busy with work and school and a toddler and husband and social life - all blessings. But things that take up my time and leave little to sit with Jesus and ask him to work in my heart.  I was deeply encouraged by the sermon on a short and simple passage in Romans (15:30-33) at church today. Paul is preparing to take a gift to a Jewish church that was given by a gentile church. He’s asking for prayer that the gift would be received well, that it would build bridges, that it would bring the Jewish people to Jesus’s word. And then he asks for prayer that he would safely reach Rome with joy and be...

 Sitting in a hospital is a bit of a time warp. The hours pass slowly some days and other days they fly by. We had a lot of visitors which passed time quickly but only one could come in at a time (COVID rules) and one of us had to leave because only two people could be at the bedside at a time. The rules had actually loosened up about 3 weeks before Jack was born and they tightened back up again at the end of August. The timing was a sweet gift from God.  After Jack’s second surgery we did a lot of sitting and waiting. We waited to see if his kidneys would start working again. We waited as the dialysis machine slowly pulled excess fluid out of his body. We waited to see if his heart function would improve after they repaired his arch again.  It is an agonizing type of waiting. We were helpless to change the situation. We waited for miracles. We searched for any tiny sign of improvement each day.  We eventually were told that Jack’s heart may not ever pump on its own ...

I have already shared that Jack had heart surgery on his fifth day of life, then was unable to come off of ECMO (heart and lung machine) a few days later, then palliative care was offered to us. In the days that followed that we were mostly just waiting. Waiting to see what the doctors were going to decide and do, waiting for Jack’s heart to show any signs of improvement that could mean he would tolerate coming off ECMO. At this point he was still fluid overloaded and making plenty of urine so he was losing fluid everyday, looking more and more like a baby and less like a sumo wrestler.   The surgeons didn’t really have an answer as to why his heart couldn’t pump on its own. They never said the words “we should have done the other surgery” because all of the measurements of his heart told them they should not have done the full blown HLHS surgery. But essentially that’s what we assume should have been done. They discussed Jack’s case in grand rounds at length. They decided to take ...

 Yesterday we celebrated Ike's 32nd birthday. When we celebrated his 30th birthday, Jack was still here on this earth (at UVA). It makes July a mix of happy and sad emotions for us now.  It was a long but fun day yesterday celebrating Ike so I'll cover two topics in this post: the joys of watching your spouse become a parent and the lows of watching your spouse grieve the loss of your child.  Ike has always been the dad type. He is a kid magnet, probably because he really is a child at heart and isn't afraid to be a giant goofball. He, historically, is the responsible and considerate one amongst his friend group. He can anticipate other people’s needs and is quick it act on it. It was my greatest honor and privilege to watch Ike become a Dad. To watch him melt when Jack looked at him. To watch him intuitively know what he needed or how best to do things for him. To watch him read books to him (even when he was in the PICU, sedated/intubated - didn't matter to Ike). To s...

 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 be...

 I already mentioned that the surgeries for hypoplastic left heart syndrome are palliative. Meaning they don’t directly fix the problem, they’re a work around, providing a livable solution to an otherwise grave problem.  I explained that after Jack’s heart surgery on day 5 of his life, he came out of the OR on ECMO. ECMO was meant to be temporary. It helps his heart while they spent a few days diuresing him (aka removing excess fluid he accumulated during surgery).  On day 9 of Jack’s life, they felt good about the amount of fluid he had lost, his weight was done, he was making urine like a champ. So they decided to try him off of ECMO and see if his heart could pump on its own.  We had to leave his room while they did all the actual de-wiring of the ECMO lines to his heart. We got lunch with friends who came to see us. We were extremely hopeful. All had gone really well until this point.  We went and saw him that afternoon once they were done. He was doing alri...

 Ugh pumping. It gets the job done with basically zero positive emotional benefits.  The fact that this was my first baby combined with Jacks complex medical situation, it is a miracle I even pumped and produced any breast milk at all. I had no idea what to expect. I’d talked to some people a little bit but even if someone had told me exactly what it would be like, it would have still been really difficult.  I had an amazing nurse the day I delivered Jack who showed me all the basics. She was incredible all around. But made me feel really comfortable as I learned to pump.  I pumped in our room the first few times. I also pumped in the NICU’s pumping room and I cried every time for the first three days (at least). I was just so sad that this was my experience. Sad that it hurt. Sad that I had to leave the area that my baby was in, go to a dingy closet with partition walls and plastic recliners, pump for 20 min, (get basically nothing for the first two to three days) a...

 We learned a lot during the entire pregnancy and duration of Jack’s life. We are still learning a lot. - about ourselves, about God, about how we want to honor and remember Jack’s life. But I want to talk about the copious amounts of medical jargon we learned during Jack’s short life.  We were at the hospital almost every day for morning rounds. 10-15 people would cram into his shared room or gather around the glass door opening to his space. Usually the resident covering the PICU that week would start with “JS is x days/weeks old, with small left sided structures. Post op day x from aortic arch repair and VSD closure…” and so on as they gave report.  I have medical experience. I could usually follow their report with the hundreds of abbreviations. Sometimes Ike would whisper what’s that mean and I’d debate answering and missing something else they said or giving him the wait a sec finger and I would tell him after.  That was a layer to the knowledge. We’d ask the n...

On my drive to work everyday I pass a billboard that reads “ your birth, your baby, your bond, your way ” from a local hospital system. It has a pic of a mom with her cute baby. I gotta call BS on that one. For myself and so many other women (I’d dare to say all), birth and bonding doesn’t go their way. Pregnancy doesn’t go their way. Their baby’s life doesn’t go their way. This is to no fault of their own. Sometimes everything goes perfectly except one little thing. Or it could be a big thing like mom had to have an emergency c section, or went into labor early, their favorite doctor wasn’t on call, the hospital messed up their medicines, their baby needed resuscitation after birth, mom experienced medical complications after, or their baby was born with no heart beat or born with a life limiting diagnosis.  Literally anything can happen. And we (moms, humans) have no control over a lot of it. Obviously prevention of what you can prevent makes sense. A lot, you can’t prevent....

I went back to work full time 4 months after Jack passed away. I needed and wanted to get out of the house. I wanted a place that “needed” me and they treated me like family immediately. I met tons of new people in the first weeks/months. With every interaction, I’d do the social math of “do they know about Jack?” That felt like my identity (it probably always will) and so it felt like all these people didn’t really know me -  I had no stories to tell about my 5 month old and no new photos for my desk and no physical living human being to bring in and show off so Jack was a part of me that they didn’t know. A few people went to high school with Ike and probably knew about it from Facebook. But generally most people didn’t know. Sometimes a person would ask “do you have kids” or sometimes it would come up in other random ways. But no matter how it came up, explaining you “had” a kid usually captures everyone’s attention whether they were involved in the conversation or not. And it u...

 Here’s a brief list of why I wanted to share more of our story through these posts:   - When we tell our stories, the little details and the big details, it reminds us how significant that story is. Someone else hears it with new ears and helps you realize your story holds weight, deserves a spot in space & time, it is powerful and should be told.  - It also shows the listener more of God’s glory and beauty and sovereignty. Our story in many ways is not written by us. It feels even more magnified as we had very little control over all the events that took place during Jack’s 35 days here on Earth. In some ways that is frustrating - in other ways it gives light to the story He wrote - not the story I had planned. - it’s cathartic for me. Sometimes keeping a story in my head makes me distracted - I spend mental energy on trying to remember every detail and it would just be easier to get it all out on paper and then breathe. It’s like it’s busting at the seams in my bra...

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 ni...

(A photo in the sunshine as we waited for the elevator to go to the OR)  On Jack’s fifth day of life, we got to the hospital early (5 something) so we could hold him one more time before he went to the OR. We didn’t know that would be the last time we would hold him (alive).  We sang worship songs, snuggled him tight and then the call came that the OR was ready and we had to start moving. A transport guy and his NICU nurse walked us down to the PACU. We met the senior surgeon (we had only met the junior surgeon the day prior) and the anesthesiologist - he squeezed his hand, gave him lots of kisses and they wheeled him off. We went upstairs to a waiting area on the peds floor which was mostly empty (COVID rules were still in place so very few visitors). We watched the office on the giant tv, I think I did some charting since I was supposed to go to a long term care facility that week. We got text updates every hour or so.  We knew the gist of the events that would take pla...

Jack was born on a Monday and I got discharged from the hospital on Wednesday. We thankfully had a close by place to stay (Ike’s sister & fam had a new house with a finished basement we could commandeer) but it wasn’t our familiar space and the bigger heart ache: we came home without a baby. He was no longer just one floor down from us - he was a 10 minute drive away. It was the worst. More terrible than a lot of our other really hard days.  I still felt like I’d been hit by a truck. Hormones raging, I was pumping every 2-3 hours, exhausted, didn’t know where any of our stuff was (Ike packed up our clothes & things that day at the hospital while I stayed with Jack & my Dad visited). I weeped. I think I sat on the floor and weeped actually. I am pretty sure I said “I can’t do this” to Ike too.  It was awful.  It got better - we developed a routine and some normalcy over the following weeks but that didn’t change the hardest part about it - our son wasn’t there ...

There is no right or wrong way to remember the baby or child you no longer get to hold or spoil or soothe or snuggle. There is no right or wrong way to grieve either.  The best advice I was given was “everything is optional except breathing.” That amount of freedom I have needed to remember - if that means I can’t go to a baby shower, I have the freedom to not go. Or to step out of church during an infant baptism, I have the freedom to do that. A wonderful podcast called The Joyful Mourning talks about milestones (#125 I think) and celebrating them (or not) - go give it a listen if you desire.  Tonight we chose to celebrate the week of Jacks birth with a date night. A bunch of friend gifted us a generous gift card to a local restaurant last year on Jacks first birthday so we used that finally and celebrated Jack.  Milestones are weird for me. Some parts of Jack’s story I am so proud of and others make me cringe that we (him and us) had to experience that. I am realizing t...

 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 i...

    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...