Tuesday, January 6, 2009

A Word about the NICU

Since January 1st, Erin & I have spent a great deal of time in the NICU at Children’s Hospital Boston. It’s also Blaise’s home for now, and so I thought I should try and say a bit about what it’s like. Of the many things that we’re learning to adjust to, the nature of parenting in the NICU will likely be an ongoing lesson. We’re still in the early stages of that lesson right now, and so I wanted to try and capture a bit about what the room is like before we’ve learned so much it becomes the new routine.

First of all, the NICU is essentially a city unto itself within the boundaries of Children’s. It has about 60 beds and offers care to babies with an incredibly wide range of difficulties. Some of the babies there simply arrived early and need to spend some time getting bigger and stronger. Others have had surgery or an acute medical problem during the first year of life and need to recover. Still others were born with systemic problems like cystic fibrosis or Down’s syndrome that will require lifelong care. In the grand scheme of the NICU, Blaise occupies a fairly unique niche: all three of those apply to her.

Her bed (or “isolette”) is at the end of a row just to the left of the entrance. It’s basically a plexiglass box that sits on top of a stand that allows for adjustment up and down. Several mattresses sit inside the box, with pretty sheets, pillows, and blankets inside for her. The box itself has two portholes on the longest sides so you can talk to her or reach in to touch her, and you can also raise the entire lid to make all this easier. The isolette can serve as an incubator, too. Blaise has shown us that she can maintain her body temperature without help, so she’s not being kept at the “toasty” setting anymore. At first though, when you’d reach in to hold her hand or touch her head, it felt a bit like a small oven.

Next to and around the isolette are the many monitors, pumps, and amplifiers that allow her doctors and nurses to listen to what her body is doing and provide it with what it needs. As a parent in the NICU, you immediately develop a very uneasy relationship with all of this equipment. IV lines are keeping your baby healthy, but look like they hurt her and thus anger and annoy you. The main monitor displays three traces describing her pulse, her respiration rate, and the amount of oxygen in her blood, providing the blessing and the curse of too much information. Then, of course, there are the many alarms. At any given moment in the NICU, there is bound to be at least one or two monitor alarms going off. They make noise for all kinds of reasons, most of which are benign. A baby’s heart lead slides off her chest a bit (or in Blaise’s case, she pulls it off) and loses good contact with the skin, for example. The monitor only knows that the voltage it reads off at the skin dropped to almost nothing, so it beeps. For a day or two, Blaise’s blood-oxygen saturation was very high, probably because she was being given supplemental oxygen on top of fairly healthy lungs. The monitor only knows that the amount of light reflected and scattering off of the blood circulating through her fingers is “at ceiling” and not budging. This is a sign that a sensor may be broken or shorted, so it beeps. You learn these things, but Erin & I have yet to really convince ourselves that beeping is okay. I doubt any of the parents there really ever do. The nurses can silence any of the alarms from multiple locations in the room, and they do it with an efficiency that suggests to me that it must be one of the first things they are trained to do in the NICU.

Speaking of the nurses, we’ve found them to be uniformly wonderful. Actually, “uniformly” may be exactly the wrong word to use since they each have a very particular style. Without naming names, Blaise’s nurses range from being a bit on the dramatic side, to being remarkably calm and soothing (both to her and to us), with all kinds of variation in how gossip-y, funny, and quick they are about things (some of them are VERY fast). What does not vary is their dedication to helping us be parents in the NICU. If we want to hold Blaise, it happens right away, despite the fact that it’s currently a bit of a production to move her and all her lines and leads out of the bed and into Mom or Dad’s arms. Any questions we have get answered immediately, or they page the person who can help. Soon, they’ll help us learn how to do some of the many things Blaise needs, including changing her diaper and helping with her line changes and baths.

Besides all that, there are the little things. You cover your hands in Purell before you go in the doors of the NICU and habitually re-apply it while you’re there. You read storybooks through phone calls and monitor alarms. The local light level changes seemingly at random, a feature of the room I’ve yet to understand. There always seem to be either too many chairs or none at all. Still, despite how strange all of this must sound, there is a lot of room to make the NICU feel a bit like a home. Blaise has a growing library of books under her bed, and a polar bear, a bunny, and a doll to keep her company in the isolette. (The bear is named “Atka” and the doll is named “Olivia Hope.” The bunny has no name as yet, but I suspect it may go by Marvin.) We’re planning to bring a wooden letter B for the lid of her box, and a Terrible Towel is en route as well. Blaise has been wearing a hat made for her by our friend Jenny, and will probably have a Red Sox blanket in there too as soon as we get home to get it. It’s not the bed we were hoping to have ready for her, but we’re making sure it’s hers (and ours).

I may try and write a bit more soon, especially as we get more used to how all of this works. Maybe Erin will add her perspective on the place too. It’s not nearly as frightening as I expected, and Blaise is clearly getting excellent care there. It is a pretty novel environment though, and we’re still learning more about it every day we’re there.


Jim said...

A Red Sox blanket and a Terrible Towel? I think I might need to bring some Royal blue to the isolette when I visit Boston.

barb haden said...

Erin and Ben,
What a beautiful little girl. Thanks for sharing your joy, your hopes and concerns, your darling pictures and Blaise's fighting spirit with us.
You all remain in our thoughts and prayers.
Barb and Jon Haden