In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.
In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.
When you are discharged from the NICU, you might be bringing home more than your baby/babies. It is not uncommon to leave with at least one piece of medical equipment. Our Mr. A, who was clearly into accessories, came home with a pulse oximeter, oxygen, suction, and a feeding tube, and shortly thereafter acquired a PICC line. All this equipment comes with extra supplies (tubing, dressing, probes, cords, chargers, pumps, etc.) It can be very overwhelming. Here is some been there/done(doing) that advice:
You will be set up with at least one “home health” company, who will own the equipment you rent (or rent-to-buy) and deliver the supplies and equipment you keep. They may also provide nurses to set things up initially, do blood draws, and, if you’re lucky/unlucky enough, perhaps even a “full-time” (8 hours a day is NOT full time!) nurse to help manage your child’s care.
Before you leave the NICU, you will be trained with the equipment. Almost all of it will vary in some ways from what you used in the hospital, so make sure to familiarize yourself with it. The home health company sends a rep to the NICU when they deliver the equipment—that is the person to drill with, as your nurse may be unfamiliar with your specific items. Ask for and keep the instruction manuals, or get them off the internet. It’s amazing how suddenly paralyzed you can become when attempting to, say, hook up the humidifier to the oxygen tank. Learn it before you need it.
Try to look on the bright side. Yes, it sucks that your baby won’t be unencumbered by tubes or wires…but hey, it’s getting you home that much earlier! All those items on the “you can go home when…” checklist can be circumnavigated. Failed the car seat challenge? Have a car bed! Can’t maintain O2 sats? No biggie! Take all meals by mouth? No thanks. No need to worry about what is growing inside the bulb syringe when you have a suction machine. No risk of dehydration with an IV! It won’t change the fact that your baby needs the equipment, and you do have the right to mope about that, but eventually either you get past it, or you send the equipment back.
Don’t send the equipment back, at least not right away. It can be so exciting when you realize your child hasn’t needed deep suctioning for a month, and so tempting to return the machines as a sign of progress. Hold onto them for as long as you can, as illness may strike. Home, like the NICU, can be one-step-forwards, two-steps-back. And insurance companies can be jerks about re-authorizing equipment.
It will be hard to get around. You’ve got a baby, infant seat, diaper bag, and all the Extras. Even if, like us, you are told to keep your baby/babies away from all germs (and therefore all people and places and things), you will still have to see your pediatrician and all specialists your child(ren) need, within days or weeks of coming home. I had to have someone come with me in order to manage everything, and so I could ride in the back with Mr. A in order to suction if needed. My mother at one point remarked that I should get a temporary handicap parking tag. I wish I had. Look into it. Depending on what your baby is attached to and how often, it may even be difficult to get around your house. Be adaptable. Set up a place for the baby to sleep in the living room. Abandon the IV pole, or at least keep it permanently in the nursery/your room/where your baby/babies sleep at night. It is very hard to navigate and takes up a lot of space. Most of the equipment comes with carrying cases—combine, discard, adapt as necessary. The goal is not to turn your home into a hospital, but to make the equipment work as best as it can for your lifestyle.Leaving hospital with medical equipment? GREAT tips to make it work as best as it can for your lifestyle. Click To Tweet
And lastly, take everything anyone gives you. Meals from friends, an hour’s visit from a relative so you can pump breast milk or sneak in a nap. All the pink bins and every open box of gauze the hospital offers. The maximum number of tubes/probes/dots/whatever your insurance will cover that month. (If eventually you have too many supplies, cut back. But insurance doesn’t look at the long-term: if you get three a month and one month you only order two, you cannot get four the next time, even if one didn’t last as long as expected. If you truly, truly have more than you need, there are Facebook groups for exchanging or donating supplies.) All 6 nurse visits. Medicaid and SSI and WIC, if you qualify. Whatever. It can be hard to receive help, but no one gets extra points at the end for having “done it alone”, and it is easy to not notice how truly overworked and exhausted you have become until you suddenly feel you can go no further. If it takes a village to raise a child, it takes all that and then some to deal with preemies with complex medical needs.