A typical day

I know this is a bad picture, but this time of the morning is bad for taking pictures. 😃

This was one of the 'rejects' from yesterday.

If the day starts at midnight, we have to start the day with snuggles. Sometimes Timmy sleeps well, but sometimes he needs snuggles. Jen had Timmy until about 3:30 this morning. I woke up and noticed his feeding bag was getting low, so I got up, warmed up his food, and restocked the bag with the right amount to be able to add his potassium Chloride at 6 am. After Jen changed his diaper, I gave him some ibuprofen, and we vented his g-tube, I grabbed him so Jen could try to get some more sleep. At 5, I heard footsteps upstairs, so I put a sleeping boy in his swing and went to check. 2 boys in need upstairs, and by the time I returned downstairs, Timmy was back awake, and Jen didn't want my offer of help. 😉 I went to lay back down, but realized he had medication coming at 5:30, so I prepared that and gave it to him. Almost laid down again, but he has 5 meds due at 6:00. 1 goes in his feed bag mixed with his food, 4 go directly in his g-tube. So those are prepped (carefully measured into syringes and capped) and ready. With 15 minutes before dosing, I decided to give you a peak into our day. At 7:00, Jen will pump as all food must go through the g-tube. She will pump every 3 hours throughout the day so that we can prepare Timmy's food by adding powdered formula to the breast milk. At 8:00, Timmy gets more meds. By this time of the day, our oldest daughter is firmly entrenched in snuggling with Timmy. Meds are also given at 2 pm, 6 pm, 8 pm, and 10 pm. By tomorrow, meds will only be given at 6 different times (the 5:30 dose is one that is getting slowly moved). His food (fortified breast milk, or 28 kcal per ounce formula) gets mixed up several times a day. It is only good for 24 hours after mixing, and the breast milk can only get fortified as it becomes available. The medication bag that holds the food for the pump to meter into his g-tube gets changed once a day.

Besides feeding at administering medications, Timmy's g-tube requires cleaning, checking and care daily. Then there is just the normal care of an infant of diaper changes, snuggling, and keeping the household going. We are adjusting to the new normal, and this post should not be construed as a complaint - we are still blessed beyond measure. As we have had 8 very healthy children for the most part, it was an eye-opener to us to see what parents with children who have medical needs go through on a daily basis. Even with our modified schedule, we will enjoy Thanksgiving as a family together. For this, we are extremely grateful.

Happy Thanksgiving from our home, to yours!