I want to take it back once again to the days Aubrey and I got to spend together and what they were like. Now, looking back, these were some of the best days of my life. At the time they were stressful and I really had no idea what I was doing. We just took it one day at a time and enjoyed each others company. I would give anything to go back to these days. Never take the days you have with your babies for granted. Enjoy every minute you get to spend with them. I now know that you never know when it will be your last day with them.
My day typically started anywhere between 2:00am and 4:00am depending on what the schedule for the week was and how many caregiver hours we had. Once I was up I usually had until about 5:30am when Aubrey would start to stir. During that time until she woke I would make sure everything was prepared for the day or maybe catch a little nap. Once she woke up we would change her diaper, give kisses and she would usually go right back to sleep. She, then would sleep until about 7:30ish when she would wake up for the day. We had a fun little game we would play with each other once she woke up and was ready to get dressed. I let her pick out her clothes most of the time. So I would pick an outfit from the closet, turn around, and say something along the lines of “how ‘bout this one?”. She would get a huge grin on her face then shake her head no. Back to the closet I went. We would go thru between 3-4 outfits when I would finally tell her that the next one is what she was going to wear.
Between getting her dressed and ready for the day was the scheduling of her food. Aubrey had to be connected to a feeding pump 17 hours a day. That leaves only 7 hours a day that she didn’t have to be connected to a single machine. So we tried to work out a schedule so that this time off was when we were together or her caregiver was there and she was up ready to play. When she was on her food we had to have a schedule of when and how much milk to put in the bag at a time so that it wouldn’t spoil. We also had to figure out a speed that Aubrey was comfortable with at which the milk was pumped into her. We couldn’t go too fast because it would hurt her tummy but if we went too slow she wouldn’t get the amount of nutrients needed for the day.
Once we got miss Aubrey dressed, her and I would dance and sing around her room. We would take time to look in the mirror and make faces at ourselves. Oh how I loved this time together. Then we would head out to the living room to play with her toys. With Aubrey’s low muscle tone she didn’t enjoy sitting for very long, so she spent quite a bit of time laying down. We were just starting to make progress with her being in the sitting position and she was starting to not want to miss out on things when she passed away. She had a fun little play mat with a piano on the end that she could kick and make music that she loved. And her favorite toy was one that Early Intervention brought. It was a simple little stand that had a curtain of beads hanging down. She just loved to grab these and swing them all around. After playing for 2-3 hours Aubrey would begin to get tired and be ready for a nap and be fed some more. Some days she would sleep for 30 minutes and others two hours. So we really never knew how much time we had. Once she would wake back up it was back out to the living room to play or do some exercises until daddy got home. Once he was there they would play together so I could get a few things done before it was time to do our bedtime routine. Depending on whether it was bath night or not determined when we started getting Aubrey ready for bed. When it was bath night, that consisted of giving her a quick bath and then changing the ties that went around her neck to hold her trach in. Once a week we changed the whole trach to a new one. Once Aubrey was in her crib and daddy had connected everything she would ask, by raising her arms in the air and putting her hands together to play patty cake. Sometimes she got so impatient she would ask before daddy was done connecting all her machines. We tried to have Aubrey in bed and eating once again by 7:00pm at which time I also started getting ready for bed to prepare for another early morning. While my husband stayed up until Aubrey’s caregiver would come so that he could get some sleep also.
Not all days were this simple, a few days a month we had to go to doctor appointments that were about an hour away and once a week Aubrey had in home physical therapy to help get her strength up. At one point I added up how many doctors and specialists she saw, I bet you can’t guess how many? 19. Our sweet girl had to see 19 different specialists in her 13 months of life. Going to these doctor appointments took a full day and lots of energy to make it through. We usually tried to stack at least two appointments together at a time. Some days up to 8 appointments. For these, my husband was usually at work so each time I had to plan and make sure we had every piece of equipment and supplies that she may possibly need. From how much food to bring to oxygen tanks to suction catheters. And then making sure we had backups of everything just in case something got contaminated or a machine decided to quit working. These days wore both Aubrey and I out, you can say we would sleep really well these nights.
Days and nights might not have been the most glamorous. I may have had to give up my evenings and get up before the birds. I may have had to give up everything and be on a really tight schedule. Not being able to go out whenever we wanted and having to constantly watch for germs. But I would give anything to go back to these days. These 13 months taught me so much, I learned so much about myself and the sacrifices us moms are willing to make for our children. I did everything in my power to make sure that sweet girl lived as normal a life as possible and that she was happy! That is all I wanted was to see that smile on her face.
Traveling through Grief 