Hannah is a former 25-week preemie, born at 1 lb, 12 oz and 13 inches long. Her early months were complicated by conditions associated with prematurity: numerous lung infections and collapse, bronchopulmonary dysplasia (BPD), CMV, MRSA, PDA ligation, ventilator/CPAP rotations to name a few. Due to the mechanical ventilation that ultimately kept her alive, she suffers from a narrowing of the upper airway known as subglottic stenosis and tracheomalasia (“floppy” airway from being on a ventilator so long). She has had a trach since November 2003 and was discharged from the NICU in January 2004. She was readmitted to the hospital in March 2004 for pneumonia, lung collapse, respiratory distress and pseudomonas infection in her trachea. She needed additional ventilatory support during that time – a step below a ventilator. She remains oxygen and trach dependent to date. Until her respiratory issues resolve, she will keep the trach.
Hannah’s “better” days work something like this:
7:00am – Hannah is usually awake and ready to go! She gets her first breathing treatment of the day followed by the first ½ of her bottle. Her reflux is so bad she can’t tolerate more than about 3 oz at a time. This takes about 20 minutes to consume. We allow a 15-20 minute break and then attempt to persuade her to eat another 2-3 ounces. She’s not as thrilled about this second helping, so this takes about another 20.
After feeding, which we hope is done by 8:15, it’s “constructive” playtime. We find activities that mirror the areas her physical therapist wants us to work on, but we try to keep it fun. Since Hannah is non-vocal at this time, we usually play signing videos in the background. They catch her attention from time to time, but there is so much she wants to DO, that she rarely focuses on them.
9:15am – Cereal time. We add whatever we can to give her extra calories. A few tablespoons of cereal, along with a tablespoon of applesauce/yogurt/or anything else that seems appealing. She is still very “gaggy” so we work on cereal for about 45 minutes. Sometimes she finishes it, most times she doesn’t. The alternative is a feeding tube. As long as she will continue to eat and grow, we will avoid a feeding tube at all costs.
10:00am – Bath time, followed by trach care and trach tie changes. After the cereal, she’s usually pretty messy.
10:30-11:15am – Quiet playtime. We read, play blocks, or if she’s not interested in that, I let her crawl around the house.
11:15am Feeding time and medications. Same procedure as the morning. We split the feed up over about an hour.
12:15pm – I am hoping that she is down for a nap. This is when I make all my phone calls: ordering supplies, refills on medications, following-up with doctors, making appointments, and my most time-consuming-fighting with the insurance company, which is at least once a week.
2:30pm – Hannah is usually awake at this time. Time for another breathing treatment. I give her a light snack-usually fruit or applesauce.
3:00-3:30pm – We usually play for a few minutes with big sister now that she’s home from school.
3:30pm – Feeding time and medication again. Another bottle, same procedure as the other feedings.
4:30-6:00pm -Family time. Daddy is home from work. Daddy “entertains” the girls while I cook dinner, do laundry, clean, etc.
6:00pm – We all eat dinner. Hannah is still very intolerant of any texture, so we just “blenderize” everything we eat. When finished, we are all together as a family.
7:15pm -Getting Hannah ready for bed. Another breathing treatment, oral medications and another bottle. She is usually so tired by this point, I just pray that she is done eating by 8:30. Then it’s a few minutes alone with the big sister and she’s off to bed by 9:00.
9:00-11:00pm -Now it’s mad dash time. I get Hannah’s bottles ready, medications for the next 24-hours drawn up, laundry, cleaning up the kitchen from the day.
We usually have a nurse report for duty at 11:00pm, but if not, someone is up all night with Hannah as we do not feel that it is safe to leave sleep while she is still on oxygen and breathing through a trach. Hannah is fed at midnight and gets additional medications. She receives another breathing treatment around 2:00am. We can now leave her to sleep until she wakes at 7:00am.
Hannah is suctioned throughout the day and assessed almost hourly to identify the need for additional breathing treatments, CPT, etc. If she’s having a bad reflux day, we spend a majority of the day eating.
This is Hannah’s schedule on a good day. However, on a bad day, there are breathing treatments that are administered every 3-4 hours, constant assessment of her oxygen saturation levels to determine if her oxygen flow is meeting her needs and trying to convince the doctor to just call in an antibiotic so that we don’t have to expose Hannah unnecessarily.
During any given day, I play many roles, some better than others. I am her nurse, her doctor, her advocate and of course, her mom. Unfortunately, I spend more time on all roles BUT mom.
Hannah’s care is exhausting. We are constantly fretting over doctors, procedures, insurance, etc. There is little time to do much else. Because of her fragile respiratory status, her only outings are to the doctor. Because of her asthma-like conditions, taking her outside is also not allowed. Ultimately, we wouldn’t trade her for the world. We pray for her healing. My husband and I love our girls with all our hearts and would sacrifice everything for their health and safety.