Saturday, June 5, 2010

A Day In Our Life...

I apologize again for the delay in blogging but life is pretty busy here at the baker household. I thought I would show you exactly how busy we have been the past week. Here is a look at one of our days this week.

Wednesday 6/2/2010

12am:

Change out formula in pump.
Meds: Captopril, Lasix, Flagyl

Change Diaper and pray Jake doesn't wake up. No Luck, he woke up. Mommy rocked Jake to sleep and finally got to go to bed around 1am

6am:
Take down pump feed
Meds: Flagyl

Try to sleep again

7am: Aidan wakes up and want's mommy to put on Disney! Mommy and Aidan hang out together.

8am:
Meds: Captopril, Lasix, Diuril, Prevacid, Vitamin D, Aspirin


9am:
Time to go to appointment Jacob's cardiologist Dr. Heydarian.
Everything looks good! Jake is gaining weight really well. If he continues like this he should be able to have his Glenn (Second surgery) around 4 months old. That would be great because having the shunt is dangerous. It wears on the heart muscle and there is always fear of it closing which would be fatal. So although the prospect of another surgery is frightening, Jake will also be much more stable after the Glenn.

Feeding Time!
65mls in syringe. 15mls at a time with 5 min. break in between. Vent after feed.

12pm:
Feeding Time!
Meds: Flagyl

3pm:
Feeding Time!

4pm:
Meds: Captopril, Lasix



6pm:
Feeding Time!
Meds: Flagyl

8pm:
Put up overnight feed. 35mls/hour for 10 hours. Total dose: 350mls. Fed by pump.
Attach Jake's heart/Oxygen monitor
Meds: Diuril


Jacob's Heart/Oxygen monitor

Jake's Feeding Pump



Stay up until midnight so I can switch out formula, give meds and start it all over again!

This is just the feeding/med schedule. Also in between all of this I try to work with Jake on tummy time, baby exercise and also teach/play with Aidan. Get lunches together, snacks and try to clean when I can.

I am so grateful for my family who has been here to help me through all of this. My mom comes over daily and Andy's step mom just came to stay with us for a few weeks to help out. This has been so great for me because my mom can go to the doctor's appointments with me and Mimi can stay with Aidan. It is so hard planning Doctor's appointments around Jake's med/feeding schedule. I usually feed him while at the doctor.

It's a busy life but I wouldn't trade it for the world!

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