Interstage- thoughts from the middle

One week after bringing Liam home from an almost five week stay at the hospital, we’re bone weary, but happy. One thing we’ve learned quickly is that Eliza was an easy infant to take care of by every measure. 

It has been a long week filled with sleepless nights- moreso than the average parents with a 5 week old. This is mainly due to Liam’s feeding schedule and my pumping. Unlike a normal breastfeeding mom, not only do I pump every 3 hours, I have to prepare it with formula for additional calories. Liam is on an NG tube and his feed is pumped in over a 70 minute span by machine which has to be manually shut off when complete - it will let you know by producing an obnoxiously loud beeping every second until you turn it off (the manual offers no mute option). Pump parts need to be cleaned and set out to dry and then about an hour and a half later we get to do it all over again. The intermittent sleeping is more than a little challenging for daily life and more than once the question of pumping/not pumping has crossed my mind. For now, I’m still pumping and reminding myself during the long night I do this for my son and he needs me. Also, this is as close as I will come to breastfeeding him, which is bittersweet, but just one of many consequences of his heart condition. 

Medicines are given twice daily. We must weigh him every morning and check his oxygen saturations morning and night. All this plus his feeds (how much he takes by mouth and how much by tube) are tracked in a binder, a page marking each day’s numbers. I bring the binder to each doctor’s appointment for review- high stakes homework since it will be this data that will help inform the cardiologists of when it is time for the next surgery. 

When I came back from FMLA leave after Eliza, I found it highly offensive when people referred to my three months away from work as a “vacation.” It was and remains a 24/7 job to be a parent. Likewise, this time with Liam has its incredibly sweet moments, but there is no mistaking how time consuming and exhausting it is. 

This week the pediatrician asked about the sleep I’m getting and noted lack of sleep as a key igniter of depression. I believe it. But sleep is only a part of the battle against depression. Being a shut-in will also put you on the fast train to crazy. Finding ways and times to get out of the house is challenging when Liam relies almost entirely on a feeding tube. I used to think three hours was a long time, but I’ve since learned that three hours is barely any time at all and not a viable window to do anything of consequence. Planning and execution of an outing anywhere will take an extreme amount of finessing and I am less than an amateur right now- I’m an interested, but reluctant ponderer.

And then there’s the question of visitors. Right now, Liam is in a middle place the doctors like to call “interstage.” Liam has had the first surgery (the Norwood), but has not had the second (the “Glenn”). This interstage is quite precarious- Liam must grow as much as possible (the goal is to double his birth weight) and avoid all sickness for him to thrive and have the best outcome. So, as the reader might imagine, there is extreme hesitancy in having people over. At the same time, there is a massive need for community and fellowship, particularly in such a lonesome and isolating stage. I’ve never been a stickler on sickness- the simple fact is kids are going to get sick and, frankly, the sooner the better. While I make no apologies that opinion in the past for my healthy daughter, I cannot hold it any longer, especially when it comes to Liam. The stakes are literally a matter of life and death. 

The way we thread this needle (I think) is ensuring our visitors are fever free (and have been so for at least 48 hours) and have all their immunizations including T-dap (I suppose we’ll soon learn who our anti-vaxxer friends are). Of course, the unspoken truth is not only do we have a toddler who attends daycare, but Logan works in a hospital- the two easiest places to contract illnesses of all kinds. Thankfully, we have a house now big enough to comfortably quarantine any sick person until they’re well. No precaution is fool-proof, but we will be responsible while ensuring we don’t become depressed hermits. 

So, what I’m trying to say is things are hard, but good, and visitors are welcome- we need to connect with people to stay grounded and sane. Just don’t bring any unwelcome tag-alongs in the form of germs, please, and don’t be offended when we ask you to wash your hands and avoid touching Liam.