How are you?
“How are you doing?” It’s a question I get a lot since we brought Jack home from the hospital. Most of the time people are looking for an honest answer, not just a, “good, thanks,” but I often struggle with how much to share (you should watch people’s eyes glaze over as I try to explain our daily life) and how much to hold back.
Our transfer from St. Thomas Midtown NICU to Vanderbilt was difficult for us. Initially it was difficult because we hated to leave the people we loved and who knew our boys SO well, but from the transport on, our time at Vanderbilt was chaotic, disorganized, and difficult to navigate. We were constantly questioning people, being talked down to, having to ask for better care/more attention/more communication. When it was finally time to leave, there was no celebration from anyone except us. We felt robbed. The day was 100 hours long and full of tears, miscommunication, and so. much. waiting. It felt like those three weeks at Vanderbilt were years longer than the 15 weeks we spent at St. Thomas because we had to constantly be on top of people, asking them to do their jobs well and communicate with Jack’s team.
I wish preemie life had ended the day we walked out those hospital doors. The reality is, it didn’t. It doesn’t for premature babies with no complications, and it especially didn’t for us. Jack went home on continuous oxygen support and with a g-tube placed. Although we are beyond grateful for these life-saving measures, they are cumbersome.
I try to focus on being thankful, but am still very much processing loss and giving myself the space to do so.
His oxygen compressor is large and heavy — we live in a two story home, so we have set up camp downstairs indefinitely. We miss our bedroom. Their nursery sits empty.
His monitor is the size of a VCR and has a 12' cord, which gives us a very small radius. He can’t be carried into the kitchen while I prep milk or held at the dinner table. We haven’t cuddled in bed and babywearing is mostly off the table.
He is tube fed, and while he does get breastmilk, there is loss there, too. Loss of a nursing relationship. Heck, loss of a bottle feeding relationship! He takes nothing by mouth for now and at times, it is devastating to stifle a mother’s instinct to feed her child. There’s nothing natural about seeing a tube in your child’s stomach. About using an electric pump to feed him. About dealing with granulation tissue, pain, and drainage and possible infection around his site. These are things that aren’t talked about because the reality? Without his feeding tube, Jack would starve. Am I thankful for it? Without a doubt. Do I hate it? Yes.
From the minute Jack and Ben were born, we spent all of our energy focusing on their healing. I didn’t give much space to let myself process the months of advocating I did while the boys were in-utero, the loss of my pregnancy or giving birth to healthy, full-term babies. We took each day as it came and trusted the Lord to get us (and them) through it.
There are days now when I look back at pictures or talk to one of our nurses about Jack and Ben’s time in the NICU and see exactly how God protected us from heartache over the details of their conditions and from the knowledge of just how close they were to death and how hard they fought to live. It is anxiety-inducing, nauseating, at times — suffocating.
BUT GOD. God steps in like a loving Father would. He wraps His arms around me and gives me space to grieve. He grabs my face in His hands and reminds me that He chose us for Jack and Ben — Jack and Ben for us. He reminds me of the miracles He performed and that He has not forgotten us. He is there in the loss, He is there in the victories. He is there in the questioning and the greiving.
He is there in the isolation. He is there when I feel like I cannot spend another minute on a phone call with insurance or the government or a nurse’s line. He is there when no one will listen to my concerns and when I am exhausted from getting two babies to two back-to-back appointments by myself. He is there while I look over three calendars and my work schedule to make sure I’m balancing appointments, home life, and my job.
There are days when I’m certain I’ve lost who I used to be and am completely unsure of who I am now. There are (a lot of) days when I am guarded and defensive because things feel out of control and I want to cling tightly to the things I think I can control. He is there, too, reminding me that He’s got those things handled.
He is there in the moments when my emotional bucket is completely drained and I have nothing left to give. If you’ve been on the receiving end of a whole lot of nothing from me — I’m sorry. It’s not personal, I promise.
“How are you doing?”
We are healing, and that takes time.
We’ve lost a lot, but what we’ve gained sure is much greater.
