Thursday, April 26, 2012

Homework Completion

I gave myself a homework assignment over the weekend, which was to iron out some logistics as well as figure out how some things people can do to help us.

I might have gone mildly overboard with the first component.  The second is a work in progress.

This entire CDH journey has been one gigantic lesson in giving up control to God.  With every doctor's visit that ends in "Things look great but we'll have to wait until he's born...", I have had to dial back my type-A control freakiness and trust in God's timing and plans.  That's a struggle, I can't lie.  What's more of a struggle is that I am quickly realizing that no matter what preparations I make, no matter how many machine guns I tote to the hospital, no matter how much camo warpaint I put on, this isn't my fight. It's Parker's.  My entire job will be to sit in an uncomfortable chair by his bedside, staring at a monitor.

Unacceptable.  I must have things to do.  I must have a checklist.  I must have control over SOMETHING.

In the process of sorting out logistics (we NEED:  Jeremiah care, food.), I came up with the Crazy Mommy Scary NICU Times Binder.  If I could only get 8 weeks of our basic needs squared away, I would be able to relax a little for these last three weeks. 

I printed off 8 pages.  Each page has a weekly calendar with the dates outlined on which we will need care for Jeremiah (this is all contingent upon Mike's TENTATIVE plan to return to work after 2 weeks, thus saving some leave time for when we bring Parker home).  Each page also has details as to which frozen meals we will eat that week.  Accompanying each meal plan is a Postit note, on which resides the grocery list of "fresh" items needed each week to supplement our premade dinners.

In the front is the master list of who is keeping Jeremiah on which days (still plugging and chugging on that one).  In the back is a page with the reheating instructions for all meals.  All Mike has to do is pull out the appropriate dinner, follow 2 or 3 steps to reheat it, and make the side dish.

**I should mention here that I am NOT a CrockPot cooker, or a premade dinner buyer.  I love to cook, and cook from scratch 5 nights out of the week.  I had no idea where to start on this odyssey of premade food... ENTER ONCE A MONTH MOM.  It is a miracle website.  If you haven't been there, go immediately.**

I browsed the recipes and picked some to test.  We ate them all (most were really good, some were *meh*), and narrowed down our faves.  I supplemented with some of my standbys that I knew were freezeable, and came up with 12 meals.  We will eat each of them twice, and they are in portions large enough to feed the three of us dinner and still have some leftovers for the week.

I spent 2 evenings (I'd say about 8 hours total) making a disaster area out of my kitchen, and the grand total grocery bill was $160.  I completely chopped through the end of my left pointer finger, which has bled non-stop for 2 days, but here is the result:

24 meals, all ready to go, in my extra freezer.  Now to say lots of prayers that it doesn't stop working on me!!

"Jeremiah Care" slots are being filled quickly. I am so very grateful for the offers of help that have poured in, and after getting over the initial hurdle of feeling like a burden to people, I'm able to realize how dumb it is not to take people up on offers of assistance in whatever forms they may arise.

We had a meeting with Chuck, our minister, yesterday. Leisa, the childrens' director at our church, knew of our situation and asked if we would like to meet with Chuck and have him pray over us.  That will have to be a whole other entry in and of itself, but it was another reminder that turning off the Ice Princess mode and accepting love and help from others is OKAY, FOR THE LOVE OF PETE.

Our dear friends the Johnsons have signed up to care for Maggie, our boxer, for the days following Parker's birth, and then to take Jeremiah to VBS for a week so we can be at the hospital together.  My grandmother has offered to let all of us move in for the week after Parker gets here (she lives about 5 minutes from the hospital). I fretted at first that it was too much, but again I told myself, it is OKAY, FOR THE LOVE OF PETE.

You know what else is okay, for the pete?  Admitting that there are certain creature comforts that might make our NICU time more bearable.  And that allowing people to provide them just makes good sense for everybody involved.  Some things we have talked about:

1) gas cards.The hospital is 33 miles from our house. One, or both, of us will be making a 66 mile round trip every day.
2) gift cards to local restaurants.  From the exit off the interstate to the hospital, there is a Chik-fil-A, Chipotle, McDonald's, Burger King, Wendy's, and Subway (among others that I can't remember).  I get to eat for free in the hospital cafeteria (hooray breastfeeding), but I know there will be days when grabbing something from the drivethru will make more sense.
3) Starbucks cards.  It's ridiculous and silly, but my husband and I share some sort of unhealthy emotional attachment to iced coffees.  Whether it be a stressful day, a happy day, or a sad day,  we will look at each other and say, "I need a beverage."  It's code for, "We have fallen prey to the lure of the Starbucks siren, and we will willingly trade $2.50 for a very large cup of happiness."
4)  snacky foods for the hospital.
5)  puzzle books (crosswords and the like).  We are nerds.

So there you have it.  Mommy Homework, completed.  Needs identified and met, "creature comforts" identified for those who are kind enough to offer.  Crazy Mommy NICU Scary Times Binder set up and ready to go.  Meals frozen.  Three week countdown engaged. YIKES!!!


  1. I'm seriously impressed with your organizational skills! I know it feels good to have some logistics sorted out. Praying for you guys daily! :)

  2. You are doing the right thing. I know you have followed our journey all this way. Who would have known we would have such a stuff case of CDH. God has been amazing through it all. You guys are going to do great and you have great lung tissue to work off of. I want to encourage you to keep letting peace come into your life and heart leading up to your delivery and even in the scary moments in the ICU. Jason and I have been filled with so much prayer we just keep being filled with peace in the scariest times. Let the Lord fill you over and over again. WE are praying for you!!!

  3. Love this post -- I honestly think we are long lost CDH sisters. ;) You remind me of ME!

    Mom to Garrett - LCDH - Born: 4/20/11

  4. Abby. I understand so well the need for some kind of control. On the days where I could do *nothing* for Samuel, I folded blankets. I could make an hour long event out of making sure that all of his (hand-made by my mom) blankets were perfectly folded and stacked on the cart in the ICU and that the ones on his bed were not bunched under his little body or soiled. It was my thing.

    A couple of other ideas for *other* people (you have done enough, Girl!): bringing muffins or premade pancakes/waffles for your freezer so that you have a quick breakfast... small frozen meals for you to take to the hospital ... or have someone bring you something yummy (you will tire of cafeteria food, I promise) stay for a chat, using the 20 minute rule (stay for 20 minutes, only stay 20 minutes more if you beg them, because sometimes company is so welcome and sometimes it is so overwhelming) ... books with short stories for NICU-Mom-Brain ... cozy blanket or shawl for you ... iTunes card so that you can choose music that is comforting to you and Parker.

    Gotta go as Parker's CDH big brother is calling.
    Corinne - Samuel's mama

  5. I just love that you have such a great plan and are as well 'prepared' as a CDH momma can ever be. My CDH baby, Michael Joseph (known as MJ) passed away almost three years ago. In his memory we started a division of Project Sweet Peas ( What we do essentially is provide care packages to families with a baby in the NICU. I know you don't know me in the least, but if you feel comfortable with it, I would love to send you a care package to help get you prepared. We put items in our care package that help pass the time in the NICU, as well as some comfort items that you may need. If you would be okay with it, you can send me an address of where to send it to If not, I completely understand if you don't want to give out your address. Either way, you and Parker will be in my prayers!! The CDH journey is a rollercoaster, and as a fellow Type Aer and someone who hates to not be in control, I know how hard it will be in the NICU to hurry up and sit and wait and sit and wait and sit and wait. Parker will lead the way. He is will let everyone know how fast or slow he can go, and as hard as it is to listen to him, it is what's best.

    All my love and prayers!
    Mommy to my Twins
    Will(healthy) and MJ(CDH Angel)
    And their baby sister Maci