Brian

A Day in the Life of Brian

In June of 2003, I gave birth to triplets. The babies were born very prematurely. We lost the little girl after one month. The other two babies are boys. One of the boys is doing great. The other boy, Brian, is at home after 9 months in the NICU. He has a trach and is ventilator dependent. He is making progress and the prognosis is good if we can keep him healthy until his lungs can grow. We have had the paramedics here in the middle of the night several times and Brian has been back in the hospital 4 times since he arrived home in March. We also have two older children, so even though this is about Brian, we are also providing for all of their needs at the same time. We have a busy household.

A day in the life of Brian:

7:30 a.m. Brian receives his breathing treatments. We use a resuscitation bag to bag in his treatments, so this takes about 45 minutes. He receives three treatments, chest percussion, and suctioning of his trach at this time.

9:00 a.m. Brian is now ready for a bottle. Brian has a tube (g-tube) that we use to feed him directly into his stomach, but we want him to be able to eat by mouth, so we try to bottle-feed him first. We bottle-feed Brian by mouth for 30 minutes. Any milk that he does not take is fed to Brian through his g-tube. Today Brian takes about half his milk.

9:45 a.m. Brian’s nap time, but because he is ventilator dependent, someone has to watch him at all times.

11:30 a.m. Brian has another breathing treatment. Only one medication this time, so it will take about 15 to 20 minutes.

12:00 p.m. Time to bottle-feed again. Same process as the 9:00 a.m. feeding.

12:30 p.m. Bath time and trach care. Brian loves baths, but would not mind if we got rid of trach care. This takes about 30 minutes.

1:00 p.m. The nurse and I transport Brian to the living room for physical therapy. We play with Brian and the physical therapist comes to work with him, as well. We are working hard trying to get Brian to sit up. I feel that we have been working on this so long. Some days I get discouraged, but he is making slow progress.

3:00 p.m. It is time to feed Brian again. We use the same process as his other feedings. We transport Brian back to his room for the rest of the day.

3:30 p.m. Brian has another breathing treatment. Only one medication this time, so it will take about 15 to 20 minutes.

4:30 p.m. We are working hard to get Brian to eat some baby food. Brian does not mind having the food put in his mouth, but he will not swallow. We attempt this everyday. Today we are trying carrots. We stop after 30 minutes, because Brian is getting frustrated. Brian swallowed a very small amount. Most of it he spit out down his tummy. This can feel frustrating to me, too. Eating should not be so hard.

6:00 p.m. It is time to feed Brian again. We use the same process as his other feedings.

6:15 p.m. The nursing agency calls and tells me the night nurse called in sick. I will be staying awake all night to care for Brian. I wish I had been notified earlier. I would have tried to catch a nap. I call my husband to make sure he will be home from work by 7:00 p.m. We try to have two adults in the house in case we have an emergency with Brian.

7:30 p.m. Brian receives his breathing treatments. He receives three treatments, chest percussion, and suctioning of his trach at this time.

9:00 p.m. It is time to feed Brian again. We use the same process as his other feedings. Brian falls asleep during this feeding. I hope that he is out for the night. I will still stay awake all night to do treatments and watch Brian.

11:30 p.m. Brian has another breathing treatment. Only one medication this time, so it will take about 15 to 20 minutes.

3:30 a.m. Brian has another breathing treatment. Only one medication this time, so it will take about 15 to 20 minutes.

6:00 a.m. It is time to feed Brian again. We use the same process as his other feedings.

7:00 a.m. The day nurse arrives. I will try to sleep a few hours. I will not help with Brian this morning unless his monitor alarms sound. I always get up to make sure Brian is all right.

This is a typical 24-hour period for Brian. I did not include his monitor sounding multiple times during the day and night. We have encountered numerous emergencies since Brian came home. Our confidence is growing because we have been able to troubleshoot and find the problem, but it is still scary to have to think clearly when your baby is turning blue. I also did not include what it takes to get Brian out of the house. That is a major job any day of the week. Wow, writing this out makes me proud and very tired!

Sandra
Dallas, Texas
Mom to Brian – 24 weeker – surviving triplet, BPD, trach, ventilator dependent