A friend recently asked me for some advice. She knows someone who just had a preemie at or around 26 weeks gestation and wanted to know how she could help them out, what to say, what not to say, etc. She gave me permission to post my response to her. It follows:
I am happy to share my advice. Some of it will be based on the assumption that you are in the same town as your brother and Erin and their new daughter, Harper.
Well, having a kid in the NICU is the most exhausting thing Kate and I have ever been through. Very important question: is this their first kid? If not, well, it’ll be even more exhausting than our journey. Anyway, exhausting, so the last thing I ever wanted to do when getting home from the hospital every day was cook. It’s sort of become a cliche, but cooking for them would probably be a huge help. I don’t think Kate and I went to the grocery store for 3 weeks after London was born. Without all the meals we received, we couldn’t give London as much attention as we did. We had one less thing to worry about and that was huge because having a 26-weeker is an all-consuming worry.
The first few days of NICU care are possibly the worst. Once the baby makes it a week, things can start to get a little easier. So now could be the most terrifying of days for your brother and his wife. It all sort of depends on Harper’s situation. Was this an emergency c-section? Did they have 24 hour notice so they could get some steroids to Harper before she was born? London did not have the benefit of steroids before she was born, which really set her back for some time. She was on the ventilator for nearly three weeks, if I’m remembering correctly. I’m not sure what I’m getting at here, but maybe it’s just that I know I was very open about London’s health and situation throughout her NICU stay. I sent out near-daily email updates to a large group of people. I would have never been able to tell all those people independently. So if your brother is open to the idea, I’d recommend that. Or if someone in the family wants to keep other family members and friends dialed into the situation by doing email updates then that would be a big help too.
I’ve completely forgot to mention that it’s so great they named her. I know that naming her is a commitment of the heart and soul that you resist when you see such a small and fragile human being. But it’s a big step and it might bring them some hope. I remember when London was just ten minutes old and being transferred from the OR to the NICU while Kate was still on the operating table, the doctor asked me what her name was, and I was just put on the spot and had to say it loudly enough that everyone in the OR could hear it. I didn’t know it then, but in hindsight, that was a pivotal moment of accepting as truth something I still couldn’t believe was happening.
In terms of what not to say, that’s always tough to answer. You know? It depends on the person’s tolerance of the cliche, like, “Everything’s going to be alright.” We heard that a few times and I may have even said it later on in London’s NICU stay, like in month 2 and 3, but I did not like hearing it in the first few days or couple of weeks even. I just wanted to know the specifics of London’s situation and all I wanted to share were the specifics. I didn’t want to speculate with family members and friends. I just tried to avoid the “what ifs”, so maybe help them do that.
I’ll stop writing after this next point. At three months early, Harper is going to be in the NICU for a long time. It’s important for your brother and Erin to get time away from the NICU. That won’t be right now, obviously, but later on it will be. As a NICU parent you feel the urge to be at the NICU as much as possible, but it is essential to get away from time to time. We wanted our health and our sanity while London was in the hospital and I think we may have lost both if we stayed there round the clock for the first month. Our NICU nurses were exceptional in that they all encouraged us to take breaks from being at London’s bedside. Clearly, we still went to the hospital every day for 109 days, but the time away from the hospital was almost as important as the time there. We needed a chance at rest and revival before facing the NICU’s minute by minute ups and downs. So, when it’s time, encourage your brother and Erin to get away, even if it takes you spending some hours by Harper’s side. Perhaps they will be uncomfortable with it at first, but they will appreciate it.
How’s that for a disjointed email? I mean, there are so many things that come to mind. Please, let me know if you have other questions. Sorry they are going through this. I hope Harper is doing well.
*All names in this post have been changed.