I was looking for a document on my computer today and came across this. These were the notes I gave to my mom and sister when the babies were just out of the NICU. I was in a friend's wedding out of town, so my husband and I had to spend a weekend away from the babies. Leaving your kids for the first time for any parent is hard, but when your kids come with a page full of medical instructions it's a different story. I'm so glad this was saved on my computer because it helps show me just how far they have come. At the time, both were being fed through ng tubes. Camdyn was painstakingly working at drinking from a bottle. Our feeding machines were never working properly. The twins were being fed every 3 hours around the clock which continued until they were a year old! Cade had torticollis and had to lay only certain ways, and we were working to keep Camdyn from getting it. Camdyn had just come home from her emergency trip to Dell after turning blue and was on oxygen at home. The feeding machines and monitors were beeping at us constantly! I can almost hear it in my head still. One night when Camdyn's alarm went off, I bolted out of bed so quickly to check on her that I ran straight into the post at the foot of our bed. Ouch! Oh, the joys of having micro-preemie twins.
Here's my mommy notes. I think it sounds a little like doctor's orders!
"Camdyn is getting 84 mL and Cade is getting 104 mL. Camdyn should be bottle fed at 9 AM, 12 PM, 3 PM, and 6 PM. The other feeds at night should be gavaged. When their feeding machines say “No Food” at the end of their feed press Pause and then press Volume. If it does not say the correct amount (84 or 104) then press Prime to prime the rest out of the tube into their tummies. Sometimes it might say Dose Done when it is clearly not done. Unless it says Dose Done and no milk is left in the bag, press Run again. Cade’s machine has a tendency to shut off several times during his feed.
They will both get 1 mL of the Poly-Vitamins and .5 mL of the Iron on Saturday morning. Use a syringe and give it through the tube.
Don’t let them lay on their backs unless they are sleeping. They need to lay on their sides propped with a pillow or boppy or on their stomachs. Try to turn Cade’s head looking to the right laying on his left cheek.
Camdyn’s saturations should stay above 90. If they are lower than that, she needs to put on the cannula. Turn the oxygen to 1/32. If she still is desatting, turn it to 1/16. The pulse oximeter will beep a lot if it is not charged, so keep it plugged in. You will have to set the heart rate to a high of 200 if you turn the machine off and on again. Otherwise, it will beep at you."
Fortunately, we are no longer in that chaotic, stressful time. We have a new chaos around here, but it does not require any machines or beeping monitors that send me into a panic attack. We just have the normal ol' chaos of toddler twins and a big sister- and it is definitely chaotic, but I'll take this chaos over the previous kind any time!
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