One Tiny Life

One week ago we brought home a tiny 8 lb little miracle. A little girl that was labeled as "medically fragile".They placed her in our home and asked that we give her lots ofour time, attention, and love.Let me tell you about this tiny miracle.. She was born a preemie with a condition called Gastroschisis.She spent almost three months in the NICU before we brought her home.She had surgery to fix the gastroschisis,however because of it she can't eat as fast or as much as other babies her age. Her digestive system is having to learn to work right....which means poop diapers are an exciting thing!My little granddaughter Brookelyn Shae can take a 4 oz bottle in 15 minutes or less, but Jelly Bean takes about 4 hours or more to take that much. Her milk is dripped in through a tube in her nose (that runs to her tummy). Jelly Bean doesn't understand how to suck & then swallow milk. When we place a bottle in her mouth,she inhales or pushes it out, instead of swallowing. We are working with her along with Babies Can't Wait ,to teach her how to drink from a bottle. We do this for about 15 minutes daily or until she gets frustrated. We hope someday she will, but we really don't know when and if she will for sure. I told Jelly Bean she was extra special,because she came with attachments:)
She has the pump that feeds her & the monitors that tell us if she stops breathing, breathes to fast, or breathes to slow.
Her bag of milk gets measured and refilled every 4 hours (day & night). Her bag gets replaced evey 24 hours. She is fed 21 out of 24 hours of the day/night.
She is on 4 medications.
She takes one every 4 hours (day & night).
Medicine #2 every 8 hours around the clock.
Med #3 every morning & night
Med #4 once a day.
The tube that runs to her tummy gets measured & replaced every two weeks, but lately it's been more often ,because she has learned to pull it out...we have learned how to replace it ourselves now. So when ever she does that, we have to measure her to see if she has grew and then put it back in. Once in, we have to take a stethoscope and listen to her tummy to be sure we have it placed right.
She is also on a special formula that you have to order through the pharmacy. She is on a pre-digested formula for babies with fat malabsorption problems.
Because it takes her much longer for her foods to pass through, we have to keep an eye on her tummy contents. Every four hours we syringe out all the contents in her tummy to be sure that she doesn't have back up or more than she can handle. These are called residuals. If her number gets to high, we have to turn off the feeds and wait for her to catch up. If we don't do this, then the milk could back up into her lungs.
It sounds like a lot,but really it's not,once you get the hang of how to do it all. I have to keep charts so that I don't forget something, and that has been a huge help.
Other than all of that,
Our little Jelly Bean is a normal little baby girl.
She loves to be cuddled. She loves to rock. She loves when you sing.
She loves warm baths and taking walks.
She spent her whole life in one little corner of the NICU,
so being out of there has been an adjustment,but one she has taken well.
She actually seems to really enjoy being able to move around and see new things.
Her dislikes,The tube that hangs from her nose(having it put in & taken out), the monitor belt that attaches under her arms (because they make her raw), Drinking from a bottle,she hates sudden loud noises, and being buckled in a carseat or swing.
But other than that, she is a sweet content little baby
and we are her VERY blessed foster parents
that already love her to pieces.