A day in the life of Jenna

Most of you are probably wondering just what Jenna has to go through from day-to-day. I took some picture and will briefly explain her routine.

This is the spread you would see on our table should you come at 8am for a visit. From left to right...Somatropin (Human Growth Hormone...that's her injection which rotates from arm to leg so it's not in the same place each day); Sterile Water (helps to dillute crushed pills); Levothyroxine (for her Thyroid); Poly-vi-sol (multi-vitamin + iron); Hydrocortisone (Cortisol replacement); Simethicone (the all-important gas relief). She gets all of this at 8am daily. When 4pm and 12am roll around, she gets more Hydrocortisone and Simethicone, but nothing else :-)

Here are two things she no longer has to take...praise God! Left to right: Phenobarbital (for seizures); Sodium Chloride (electrolyte balancing).





This is the Y-Port on her feeding tube where I can temporarily clamp her feeding off in order to administer her medications. It's so nice to not have to disturb her when she's sleeping!



Jenna typically get her bath at around 8:30 or so. She loves bath time!! She is able to be off her continuous feed for a short while...what a relief!!





By 9:00am, it's time to replace her feeding bag (once daily) and extension-set replacement (once a week). She's still receiving breast milk (while supplies last). The little packets you see is her milk fortifier (adds calories to make her the chubby munchkin she is).

Shortly after 9am, she's ready to go for the day! We have to tote around this pump/pole/bag gizmo throughout the house. When we have to leave the house, we have a handy back-pack the pump and bag fit into. It's rather awesome!!









Here is a better picture of her feeding-tube/Mic-key button. It goes right in her stomache on the upper, left-side. I'm so glad it doesn't bother her as much as it use to. She's dealing with it quite nicely. We've had to replace 2 feeding tubes/Mic-key buttons already due to the balloon breaking. The balloon is on the inside of the stomache and holds up to about 10mls of sterile water in order to secure it in place. The white square you see is merely a barrier to keep the button from irritatin her skin. She doesn't always need it, but seems to be more calm when it is in place.


Jenna is typically in bed no later than 9pm each night. She sleeps great and I've never *crossing fingers* had her wake during the night (despite me filling with her feeding bag, administering meds, changing diapers...she sleeps through it all). Her body is doing a lot of healing during her rest and I pray it continues to do so.

Feel free to ask any questions should you have them. I just thought you might like to know more about what goes on in our angel's life on a daily basis.