Now that we were home, it was time to come up with some sort of a routine. Here is what our days usually looked like:
A.J. and I would wake up and get Laura’s meds ready for her 08:00 med time. I would pump and then we would go get Laura from her crib (which it was amazing to see her in after all that time with it sitting empty).
We would give Laura her tacrolimus, cellcept, prednisilone, ativan, amlodopine, nystatin, vitamin d and clonodine by mouth and then would proceed to put her pantoprozole, iron and septra (if it was a weekend) into her NG tube because she hated the taste of them.
After meds, we would bring her out into the living room to have a few minutes to play before it was time for her enoxaparin shot. We always waited 10-15 minutes after giving her meds before giving her shot so that if she screamed to the point of vomitting, her medications would have already absorbed into her system. One small dose into her thigh fat (of which there was not much) with an insulin needle and then hold pressure for 5 minutes so that she didn’t end up covered in bruises. It was the holding pressure that Laura really hated but it had to be done.
After her shot, she could play for a little while on the floor before it was time to be fed. – she LOVED her baby gym toy.
Laura’s feeding schedule was to begin at 09:00 so before that, we would take 15 minutes to try to feed her as much from a bottle as possible. She would normally cry and then take a few sips, cry and take a few sips. After 15 minutes, she would have taken about 10 mls (less than 1 Tbs).
After her bottle feed we would measure out her remaining milk requirement (in total she needed 135 mls at a time so if she took 10 by bottle we would feed her 125 through the tube) and put it in the feeding bag. We would then prep the tube, set the pump settings (feed rate and amount) and hook up her NG tube to the pump. When we first got home it took about 40 minutes for her to get her full feed so she would either play in her cradle while being fed or she would fall asleep.
Med time! We would crush up a half a magnesium tablet and dilute it into some milk. Laura hated the feel of the bits of tablet so this always went down her NG tube. Around this time Laura would be ready for a nap so we would put her down in her crib. She usually slept for about 1 to 2 hours. In this time, we could make sure that her areas of the house were sanitized and clean. We would also have a little bit of time to sit before her next feed/med time.
Laura would wake from her nap and we’d get to read stories and play for a little bit.
Bottle feed and tube feed. At noon she also received her methadone at this time – it always went down the tube because it tasted awful.
If Laura woke up at 11:00 she would be ready for a nap at this time. Another 1 hour nap or so. A.J. and I would take this opportunity to eat something for lunch.
By this time Laura had likely been up for a little while and have played, read stories, done some physio, etc. At 02:00 Laura was due for her ativan and clonodine again which she took by mouth. After meds we would sing songs, walk around the house, play a bit and practice our physio – this was the point in the day that we worked the most on her strength – getting her to hold her head up and trying to get her to sit on her own. We also practiced tummy time (we could usually make it about 1 minute of screaming before she turned beet red and her blood pressure would get too high) and rolling over.
Feed time! Like always, we would give her the bottle first and then top her up with her NG tube. She was ready for a nap around this time so we would put her to bed after the bottle and allow the pump to run during her nap.
4 in the afternoon was the only even hour that Laura didn’t receive any meds so we didn’t have to bother her at all during this time. She would normally wake around 16:30 or 17:00 and we wouldn’t be due for meds or a feed until 18:00! This was our longest stretch during the day so if it was warm enough, we could take Laura for a walk or go to the park. This was always the best time of the day because for a little while, we could just enjoy being home with our baby girl.
Feed time, med time (methadone and magnesium) and supper time! Laura would sit in the swing that our friends lent us for supper because she couldn’t hold her head well enough for a high chair yet.
After supper was bath time – Laura LOVED her bath tub. She always had the best time and would try to pull her NG tube out when we were busy washing her – she wasn’t always successful which was good because I had gotten sick of inserting the silly thing every day.
Time to get ready for the next big med time! We would lay out all of her meds and read her night time stories while we waited for 20:00 to arrive. She received all the same meds as 08:00 with the exception of Prednisilone which was given only once daily. By the time meds and her enoxaparin shot were finished with, it was usually about 20:30 by the time she was ready for bed. We would read her a little devotional out of a book that I was given by my mom and then tuck her in for the night.
Laura’s day was over but ours was not. She was due for a feed at 21:00 so we would get the bag filled and ready and head into her room while she was asleep to start her feed. When it was finished, it would beep to let us know that it was time to give her line a flush and disconnect the line.
Laura wasn’t due for any meds at this time because I had moved her magnesium to 18:00 so we would take this opportunity to measure out her milk for her two night feeds as well as draw up all of her nightly meds. I had to stay up until 11 to pump and A.J usually stayed up with me. We had split shifts over night so that neither one of us had to get up every 2 hours.
We would get some time to unwind from our day and hang out and watch some tv or play cards or other games or just sit and enjoy the down time.
Time for bed!
One of us (whoever’s turn it was) would get up to go give Laura her methadone and to start her first night feed – warm the milk, fill the bag, start the pump. We would have to get up again 40 minutes later to flush her line, disconnect it and turn off the pump.
The next person would get up and give Laura her clonodine and ativan through her NG tube because she was asleep.
Get up, give Laura her methadone and start her feed again. Get up 40 minutes later to flush, disconnect and turn off the pump.
Time to start the next day!
On the surface, it appeared that we had brought home a healthy, normal baby girl but those first months at home were exhausting. It wasn’t like having a newborn at home where you are getting up to feed them every 3 hours – then you get to cuddle and enjoy their presence – it is much more difficult to feed a machine – not quite as nice and cozy. The med times and feeds were tiring and trying to get her to eat by mouth was frustrating and hard. We had appointments in the city at least once a week where we would have to bring all of her meds, feeds, pump, etc.
As difficult as it was, though, we wouldn’t have traded it for the world. We had Laura home and in between all the medications and tube feeds and shots, we played, read stories, sang songs, and enjoyed having the most normal family life that we had ever experienced.