So what is a day in the life of a trisomy infant mom like?
I imagine that they are all vastly different, depending on the special needs of the child. I think right now that we have it “easier” than many others. So far, James has been rather low-maintenance for a special needs/medically fragile baby. In some ways, he is actually easier than your usual infant. Our days have developed a nice rhythm, and we are doing extremely well at home. I never take it for granted. I wake up knowing that every day, something could suddenly change. I don’t worry about it, but I look the thought in the face every morning, then move on with my day.
Our routine has settled. At 6 or 7am (depending on bedtime), I get up and get him “breakfast.” He’s being continuously fed via a nasogastric tube and feeding pump. This helps prevent him from working too hard to suckle and burning precious calories that he needs to gain weight. He receives 14mL of breastmilk fortified with formula every hour. After refilling his Kangaroo bag, I go back to bed with him and sleep until 10am. My husband has been getting up with the kids and letting me sleep in with James.
At 10am, James gets his medications. They are all liquid and given through his NG tube. He is on 3 diuretics, 2 electrolyte supplements, an anti-seizure medication, a heart medication, and an acid blocker for reflux. To make my life easier, I have pre-drawn up all of these medications for a week. I keep them in a lockbox in our bedroom so that our girls (who think liquid Tylenol tastes delicious) cannot get to them. I administer his medications and then either go back to sleep for a bit or get up, depending on how I feel.
Through the day, James gets a new bag of milk/formula every 6 hours.
His medications repeat at 10pm at night.
He sleeps a lot – due to his heart and slow growth. When he is awake, he is happy and alert. He rarely fusses. I gather this is partly because he is always “eating” via his feeding tube, so he doesn’t have the usual need to cry like other babies. He doesn’t really fuss with a dirty diaper either. He seems to be very content overall.
After the girls are in bed, James and I have special time together. He snuggles on me while I watch movies or read a book (or check Facebook). We usually stay like this until around midnight, when his food needs to be changed again. At that point, we head to bed. James sleeps very well, and I generally do not get woken up between 12am-6am. He sleeps next to me in the bed.
Interspersed in all of this is frequent pumping. I can’t say that I love pumping, but I am grateful that I have a great supply and a freezer loaded with milk.
As to his equipment, he currently has a RAM cannula in his nose supplying pressure and oxygen. His oxygen needs have dropped dramatically since he got over his cold, and he could likely do without it at this point, but he still needs a little pressure to keep his airways open (T18 babies have “floppy” airways). This requires a large, noisy oxygen concentrator that lives at the end of our hallway, as well as a laptop sized Trilogy ventilator. He also has his feeding tube. T18 babies frequently have problems with thick secretions, so we have a suction machine at home to keep his airways and nose clear as needed (as an aside, it’s the same suction unit that we use at work for surgery). He also has his feeding pump and a pulse oximeter.
When we first brought him home, it would take about 30-40 minutes to move him and all his attachments from the bedroom to the living room. It was cumbersome and stressful. My husband and I devised a plan to modify an Arms Reach cosleeper, and so far, it has been a resounding success. Now we can roll him into the living room without difficulty.
It’s been an adjustment. I won’t say that it’s easy, although I think that right now in the infant stage, it’s probably the easiest that it will ever be. I haven’t really gone anywhere other than one trip to Target (which went surprisingly well) and into the front and back yards with the girls. But every day IS getting more doable, more normal.
I am actually considering returning to work in a few weeks (beginning of October) if James continues to do well.
People ask me how I do it. My answer has become: “I don’t know. I’m just doing it.”