Friday, December 10, 2010


Matt and I have learned SO much since we've been at Mount Washington!  In the last week, we've demonstrated proficiency (it's like medical MSAs!) in trach tie changes, g-tube cleaning, feeding and disconnecting, giving medicines, non-nutritive oral stimulation, and range of motion exercises.  I've learned a lot about the ventilator, but still don't really understand it.  We've also watched a trach change while the respiratory therapist talked us through it step-by-step, so the next one will be up to us!  (Of course, the respiratory therapist will be close by giving lots of directions!)  We each have to do three trach changes before we are considered proficient on those because they are the most intense.

So since we've learned so much, why do I feel so overwhelmed?!?  I kind of lost it today when I thought about how I would ever be able to do all of this by myself.  We'll start out with 24 hour nursing care, but that will quickly be tapered to where we'll probably only have 8-10 hours a day.  Pitiful, I know!  When I consider how I'm going to be able to take care of Abby and entertain Caleb by myself when Matt is at work, I pretty much start hyperventilating. 

Who is going to tell me when it's time for her to eat?  What if I lose track of the time and forget to feed her every three hours?  She can't even cry to tell me she's hungry!  Who will help me troubleshoot when the feed isn't going through?  Who will explain the meaning behind all of the different beeps?  Who will help me untangle the tubes and wires?

Yeah...I really need 24 hour nursing care.  I don't have it nearly as "together" as I would like to think.

In other (but related) news:  I had a mini-meltdown yesterday because I couldn't get Abby out of the crib to hold her for all of the wires and tubes going every whichaway.  I thought I had refed all of the tubes (which requires unhooking, refeeding, and rehooking each one individually) so that she could be taken out, so I picked her up only to realize that her feeding tube was still through the rails.  I laid her back down, stopped the feed, refed the tube, and hooked it back up.  Finally, I was able to bring her out, sat down in the rocking chair, got comfy....and Dr. A came in to examine her.  Yes, she wanted her put back in the crib for this. 

I *might* have started crying at that point at the sheer frustration of the amount of effort it takes to hold my baby.  Sigh.


MaryJo said...

Chin up girl. Your baby girl is here for you to hold. wires and tubes will not defeat you.

Erin said...

Julie - just be patient, and 6 months from now you will be able to do everything as if it is second nature. You can do it . . . remember you were chosen for this and the Lord will lead you through it all! He will not give you more then you can handle.

Sarah said...

Hi Julie! Glad to hear you're learning so much @ MW. It's okay to feel a little overwhelmed, better than being overly confident, right? I can somewhat empathize, I had the same thoughts, although Lily & I only had a cardiorespiratory monitor, oxygen tanks, and a canula to contend with. As much as you look forward to having your little girl home, being left to your own devices IS overwhelming when you're used to being surrounded by "experts" 24/7! You're an amazing mama, and in no time you'll get your routine down and have confidence in your ability to handle it all. You are The Abby Expert, after all! No medical team can ever care for Abby as well as her (well-trained) mama, and that's just what you'll be by the time she's discharged. And I'm sure you'll have tons of support when (if!) you need it. If ever a mother had it together, it's you! Just my little vote of confidence, for what it's worth. ;) Hugs!

tp said...

oh, Julie.

Anonymous said...

Julie, sorry I have not seen your blog in a while. Yes it is very overwhelming, and break downs are natural. You are a great mother and Abby is very lucky to have you as a mommy. One day at a time, one hour, one minute. And Please remember to take mommy time now while you can. The trach does not bother me as much as the GT tube as that can be very tricky. And you will learn all the differences in the beeps, If I can learn them I know you can and will too. Take advantage of all the experts, and you will become one with Abby. you will know when something is not right with her even though she can not cry, her facial expressions will tell you all you need to know. And God will be at your side every step of the way. Pat