One of the things that I have found to be immensely helpful both for myself and for my children is having a routine within this period of time when our usual routine is out the window. It helps everyone know what to expect each day, even Elvie. The baby’s schedule isn’t dependable, but we can start our day the same way no matter what time she wakes up. Similarly, what needs to be done medically is different every day, but we can build a structure into the day that can accommodate whatever comes our way. Jarod and I try to make sure we are doing the most juggling of schedules, and that Zinashi’s is as close to normal as possible while still meeting certain family goals.
There are two main goals that we have for our family life at this time. First, we are committed to having one parent stay with Elvie at all times. Second, we are committed to Zinashi having quality time with each of us every day. This is where the juggling comes in. Luckily, we live relatively close to the hospital, which definitely makes the juggling easier.
In order to have one of us with Elvie at all times, we essentially have to tag team to get it done. Jarod’s mom is here from Kansas City, so she takes charge of Zinashi, which is a huge help. We can switch places at the hospital with a minimum of fuss. Our current schedule is that I am with Elvie during the day, and when Jarod gets off work, he comes straight to the hospital so I can take the streetcar home to shower and possibly eat a little dinner. When I’ve showered and gotten together the things I’ll need for one more day at the hospital, I come back, and he goes home for the evening. Most nights I take the overnights so that he can be fresh for work the next day. I’ve found that with one night of excellent sleep per week, I can mostly function normally.
The other aspect of having someone with Elvie all the time is figuring out how to get food and drink throughout the day. In the morning, when Elvie has woken for the first time, taken her bottle, and drifted off, I sneak out for coffee. I try to do something similar with lunch and have had mixed results. It’s incredibly important to us that Elvie see one of our faces as her constant all day long, so while this gets tricky, I honestly do not mind. I would much rather figure out how to cajole a very alert child into napping than leave while she is awake and have her become confused or scared.
So that each of us can have time with Zinashi each day, Jarod’s mom brings her to the hospital around the time Jarod arrives so that they can have dinner together. This way, I get a head start on my shower while they enjoy one another’s company, and when Zinashi arrives at home, I am ready to help her through bath, pajamas, and books, then get her tucked in for the night. To be honest, this doesn’t give either one of us much time with our first daughter, but it is the best we can do for now. I always hate to get back on the train from home to the hospital, wishing that both of my daughters could be in the same place, and that I could stop rushing to get from one place to another.
The longer Elvie is in the hospital, the easier some things get, while others get harder. It is easy now to dash across the street for coffee, confident that I’ll be back before Elvie wakes. It is hard to leave one girl behind and go to the other one. It is easy to fill my days at the hospital in between all of Elvie’s medical assessments, but it is hard to figure out how to build in more time with Zinashi. It is easy to sleep in the hospital chair that turns into a bed, but it is hard to convince Elvie to sleep enough in the night that I actually get some use out of it.
In the midst of all this, we just keep working towards our goal of getting Elvie home. That, above all, will simplify our lives, not to mention make them even richer than they already are. We press forward in hopes of meeting that goal soon, so we can all be together as a family, and the rhythm our days have now will be a hazy memory.
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