Life with One (1) Medically Complicated Infant: An easy day.

Being a bit over a year into my son's wild and crazy life, his medical needs have dropped down to "baby who needs asthma-control medication and judicious choice of outings during cold and flu season".  IOW, he's so close to being a normal 9 month (adjusted) baby that I feel like I can breathe.

I'd breathe more easily if I hadn't gone back to child hoarding adoption blogs. 

See, I have no idea how many of these families are even pretending to function.   My single medically complex son pushed my skills at organizing, sticking to a schedule, staying calm, ad-libbing, communicating and not losing my mind to the brink.

I didn't home school.  I didn't work outside the home.  I didn't do more than a handful of chores a week.  I didn't cook meals from scratch.  I relied heavily on my husband, my parents and a few family friends to keep our lives running well enough that we could keep my son healthy and growing.

I don't think people get a clear view of what a medically complicated kid looks like from those blogs - so I'm going to outline what I remember doing at various time intervals.

I also feel compelled to point out that my son was much easier than many medically complicated kids.

• The doctors know exactly what is wrong with him.  
• I live 30-60 minutes away from a city with a level 4 NICU (that's the kind that is attached to a pediatrics hospital that can do all sorts of tricky surgeries), a top rated children's hospital that has an out-patient clinic where my son is being monitored by a series of pediatric specialists, and a family doctor who thinks she's the luckiest doctor in the world to get to have my son as a patient.   
• My son weighed between 8-16 pounds so I could move him without assistance and without being likely to injure myself.
• My son is a super-good, mellow baby.  His personality is as easy-going as they come.
• My husband and I learned how to use Jack's oxygen (O2) and feeding tube (NG) easily.
• I'm really good at formulaic paperwork and I find playing phone-tag with insurance companies vaguely enjoyable.   
• My husband makes enough money that we could simply buy a lot of odds and ends that has made our lives more simple while he was working half-time.  
• Most importantly, my parents were on-board and ready to go with helping out with Jack.  

Here we go.  I'm going to start with an "easy" day.  This is any day that does not include a bath, having to redo taping, out-of-the house visits or any in-home therapist visits.

Average Day Schedule with a newborn Jack:  (Jack had issues with severe choking during reflux episodes not associated with feeding so an adult who could do infant CPR had to be with him at all times.)

9am: Wake up.  Get dressed for day. Stretch legs.   Eat breakfast while getting an overview of Nico's time with Jack.

9:30am:  Take over Jack's feeding so Nico can get ready for work.   Say goodbye to Nico when he leaves around 10am.

10am: Get Jack settled into his Rock'N'Play.   Throw in a load of laundry. Tackle one of the weekly duties.   Nap/ down time for me if possible.

11am:  Change over laundry.  Fold yesterday's load.  Give him his dose of Zanac at least 30 minutes before noon.

Noon: Begin a feed with Jack.
Feed routine:
1) Change Jack's diaper (and clothes if needed).  He's got wires on the toe of one foot, two chest leads, one oxygen cannula and a feeding tube.    I always felt like I was trying to put a diaper on an octopus.
2) Put Jack in safe location while I get his bottle out of the fridge.
3) Put warm water in his bottle warmer.   Put bottle in warmer.
4)Look up what medication/vitamin he needs at this feed.  Measure medication and add to formula.
5) Assemble the Dr. Brown's bottle system.
6) Stack pillows on the couch so that I can feed Jack in a left-side lying position without too much discomfort for me.
7) Feed Jack stopping to burp after each ounce.  Each choke, gag or reflux flinch is "one strike".  After three strikes, we need to stop the oral feed and switch to his feeding tube so that he doesn't learn to associate feeding with pain.
8) Finish by feeding tube.

• Put baby in rock'n'play or his crib.
• Get a 10ml syringe, 2 oz syringe, and a length of string.
• Tie the 2oz syringe to the string.  Tie the string to a piece of furniture that will hold the syringe at a constant height of between 6-12 inches above Jack's head.
• Pull the feeding tube out of Jack's onesie. (This was often the hardest part; I swear that kid wrapped the tube around his legs on purpose.
• Attach the 10mL syringe to the feeding tube. Draw out any air that's accumulated in his stomach.  Detach the syringe from the tube and blow the air out.  Repeat until the syringe shows stomach fluid or formula.
• Attach the 2oz syringe to the feeding tube.  
• Hang the 2oz syringe from the string.
• Fill the syringe with 2oz of formula.
• If the tube isn't flowing, use the plunger to push a few milliliters of formula through the tube.  
• Repeat the last two steps until he's finished the bottle.
• Detach the 2oz syringe from the feeding tube.
• Use the 10mL syringe to draw out air as above.
• Cap the feeding tube.

9) Wash up all of the items used during this section.

Feeding Jack takes between 1-2 hours.  Jack's usually pretty tired by the end and often will fall asleep.

1pm: One or both of my parents would come over.  They would finish Jack's feed while I caught an hour to two hour nap.  I'd need to add medication to his 3pm feed if they were staying before I fell asleep.

3pm: Wake up from nap.  If my parents are staying, I do an out of the house errand or exercise.  If not, Jack's ready for his next feed which will last until between 4-5pm.

4pm: Nico comes home.  He goes to sleep for two hours.

5pm: Eat lunch if I haven't done it already.  

6pm: Nico wakes up in time to take over for Jack's 6pm feed.  I go to sleep in the bedroom until 11:30pm.  

9pm: Nico feeds Jack.  He also gives Jack his nebulizer treatment which Jack has strong feelings about.  He catches a nap on the couch where he can hear Jack's alarms.

11:30pm: I wake up and take over Jack for the night shift.  Give Jack Zanac right away in his feeding tube since it is most effective on an empty stomach.

Midnight: Jack never wakes up for this feed - ever.  Since infants aren't really active participants in physical therapy, I do his PT on him after I change his diaper, skip the oral feeding portion and move right to feeding him through the tube.  It takes about 30 minutes to feed by tube only and 15 minutes to change his diaper and do PT when he's asleep.

1am: Work on blog post if I'm not sleepy.  Nap on the couch near Jack's bassinet  where I can hear and respond to his alarms if he chokes if I'm sleepy.

3am: Question all of my life choices; I'm not a night owl.  Play a bit with my wide-awake baby, remember that this isn't going to help him differentiate day and night, and get down to feeding the baby.  

Between 4-5am: Finish feeding Jack.  Fall asleep on couch.

5:30am: Nico wakes up and starts making coffee.  I wake up, mumble "I love you" and go into the bedroom where I can sleep more deeply until 9am.

That was an easy day with one kid and three-four caregivers.  The next post will be on the repeating issues that cause days to go from "easy" to draining.