Thursday, August 9, 2012


Abby... meet proverbial wall.

When I sauntered about saying, "Balls to the wall, Parker!", I forgot to look where I was going, and I myself have Hit. The. Wall. Done.  Box it up.  I'm over it.

I am tired of my car.  I am tired of this building.

THERE ARE NOT WORDS to describe how tired I am of this sign.
 I am tired of this elevator.

I am tired of this lobby.

I am tired of this hallway.

I am tired of this hallway.

I am tired of these fish.

I am tired of THIS hallway.

I am tired of this elevator.

I am tired of THIS HALLWAY (for the love of pete with the hallways).

I am tired of these doors.  I am tired of calling back to say "I am here to VISIT my son, Parker."

I am tired of this room.

I am tired of this cafeteria.  I am tired of the “Monthly Superfoods” and I am grouchy that we are now on our fourth superfood (avocados, mushrooms, berries, and now chiles, in case you were wondering)

I am tired of this bench, where I eat lunch every day.  I am tired of that stupid bag that Northside gave me.  It is ugly, but I’ve never been able to bring myself to get a nicer one because that means we will be there longer.

I am tired of having all four of us in different places.  We all four have not been under the same roof for more than 12 hours in 12 weeks.  I am tired of not being home to play with Jeremiah. I am tired of snapping at my husband.  I am tired of Mike feeling guilty for going to work.  I am tired.

Added to that, I hit that dog, Mike got rear-ended at work, he got dispatched to a call for a fetus in someone's freezer, and my dad and cousin were in a boat explosion/ensuing fire (no very serious injuries, praise God, but a complete disaster nonetheless).  Needless to say, our mental states have taken a few blows this week.

It looked/sounded like we were going to go home in less than a week.  Now, we aren't sure when we will be going home.  Not due to any real changes in Parker's health, but more due to logistics such as determining which medicines he needs at home and what equipment we need from the home health company.  In my mind, these are not things that require more than a day or two to coordinate.  They want to finish off Parker's Ativan wean in the hospital. I feel like we can administer those last few doses at home.  They were hoping he would be doing better with his oral feeds.  I am completely prepared to take him home on his NG tube and we have been taught how to deal with that.

I am not a doctor.  I do not know all of the things that need to line up so that they feel 100% confident in sending Parker home. I am just a frustrated wife and mother who has reached the end of the rosy rainbow.

We've hung in there pretty well for 12 weeks.  I'd like to think that we have been cooperative parents and that we have helped as much as possible in Parker's care.  I'd like to think that we have had significantly fewer meltdowns and tantrums than we might have.  

I'd also like to think that our time on the merry-go-round is over.  It's been real, it's been fun, but it hasn't been real fun.

I feel somewhat guilty for unloading... The CDH community has lost way too many babies in the last few days (Those are just the ones who are part of the Facebook groups.  In all actuality, 3 CDH babies die every hour and there just aren't words for that).  There are two CDH friends who have reherniated this week.  There are NICU parents who have been chugging along much longer than we have.  We WILL go home, and that in itself is enough of a blessing to outweigh the rest.

In that spirit... let's turn the beat around.
-I am tired of the building, but I am grateful beyond words that it is there
-I am tired of the parking deck, but the little man in the ticket booth makes me smile.
-I am tired of the elevators, but I don't wanna be walking no stairs.
-I am tired of the lobby, but I am grateful for the people in it who volunteer to make the kids smile.  There are clowns, visiting celebrities, and our very own Fairy Godmother.
-I am tired of the fish, but they remind me to "just keep swimming."
-I am tired of the hallways, but at least I get my exercise.
-I am tired of the NICU doors, but I am grateful for the security and the fact that they have my baby on lockdown.
-I am tired of Parker's room, but I am grateful to be in it instead of in the critical care area.
-I am tired of the cafeteria, but I am grateful for my free meals and for the people who work there.
-I am tired of that bench, but I am grateful to be able to sit in the sunshine in the beautiful garden.
-I am tired of this rollercoaster, but I am unable to adequately convey my thankfulness to the God who has carried us all through.

Temporary trials.  Eyes on the prize.

"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
~2 Corinthians 4:17-18

(just 'cause he's cute.  Mohawk courtesy of the night nurses.  Rock star!)


  1. Abby you are just too good! Dealing with CDH is crap! Love your blog and your story, gives me hope to where we will be hopefully in a few weeks.

  2. Oh boy oh boy. I know that feeling so so well. I remember thinking, "I physically cannot repeat these motions and more times. I am trying to remain thankful, but I am really really over this. Get. Me. Out." And then I got mastitis, round three (or four?), Clara tested positive for MRSA (after nearly three months of negative tests) and the attending said, "Okay, I'm taking this a sign that you both need to get out of here. You're going home today." SWEET JESUS! You are going to straight up ROCK the Mama-Oral-Feeding-Boot-Camp (I'll email you on that later), and I hope that it begins soon. Very very soon. Tie a knot and hang on; emancipation day is coming.

  3. Oh, you are a good woman to have made it to twelve weeks and be just getting to the "Done Zone". I remember this all too well. I mentioned the frustration about getting everything in line to go home in your Taking This Show on the Road post. It is soooo frustrating! We were so ready to go home especially with the Christmas and New Year's holidays coming (and going). I love your positive spin on all the things you are tired of. That's a great way to look at things. In my posts around that time, you can almost hear me screaming off the screen. Jacob was pretty sick with withdrawal symptoms and some doctors were passing them off as whatever so a lot of my frustration came from not feeling heard and feeling sorry for my sick baby. The Ativan wean was surprisingly more difficult than the morphine.

    I understand your guilt about complaining about your situation when others are going through a lot worse, but your struggle is your struggle. You don't have to be okay with it just because someone is struggling more. It's a hard and tiring journey nonetheless. You have done so well being positive, it's okay to be tired of the whole mess and just want to be home as a family.

    Thank you for sharing the verse from Corinthians. It is a very good reminder of God's greater glory!

    And I have to throw in there I'm a little jealous...what's this about free meals?? As a breastfeeding mom, I got free meals for only 3 days. I pumped the entire time Jacob was in the hospital and was producing a gallon of milk every two and a half days. I was like, "Do you know how much money I'm saving you in formula?!?" I thought the insurance company should be paying me! Is there a program for moms at your hospital?

    LOVE, LOVE, LOVE that smiley picture of Parker!

    1. Breastfeeding moms get $6 credit for every meal, combined with the 25% parent discount. They take good care of us here!!!

    2. That's awesome! I think that's a wonderful program and really helps support breastfeeding moms.

  4. Abby I don't know you from Adam but I have been following for a few months now....My family and I have had our own version of "tired" this spring/summer but no where to the extent of your tiredness, but I completely understand where you are. I think you are the rock star and I am amazed every morning when I check your blog at your attitude, outlook on things and you spunk. :-) Your boys are lucky to have you as their momma and you will all be reunited under the same room very soon! Praying for you all.

  5. Abby I knew from day one that you are a CUP HALF FULL not a cup half empty girl!!!! You and Mike have held tight to God's hand through the super scarry days and are now hanging on to him through these last seemingly unending days of this NICU journey. Chrissy is so right....hang on Mama-Oral-Feeding-Boot-Camp will test your CUP HALF FULL view again. But I know "ya got this, ya have the right stuff!" Thanks for being so open and sharing your journey.

  6. You are a pure delight ... even when you don't want to be or think you are! Freedom from all your "am tired ofs" is going to be a glorious thing and a day we will all celebrate with you. Be proud of who you are and what you are made of .... hey, that is what has given Parker his will to FIGHT!!!!! Keep turning the beat around and your eye on the prize .... you are almost there!!!!!!

  7. "Before you can see the light, you must deal with the darkness. So let the Lord light your path so you stumble less."

    Many prayers for you and your sweet family. Thank you for allowing us to follow your journey and to pray for your family. You've been an inspiration for me to push forward through the tough times.

  8. Abby, I so understand where you are here. I posted something similar on Samuel's blog in February when we were back for 3 weeks for his third repair surgery. Like you, I felt sick of the whole schmere (we'd already done 5 months the first go-round, for crying out loud!) and, like you, I felt guilty for complaining. As Katy said, your struggle is your struggle. Thanks for sharing that it is hard and still managing to keep humour and gratitude as well.

    I smiled about the hallways... I used to allow myself the length of the hallway down to the ICU as my "complaining time." I would rant and curse in my own head the whole way, then open the doors to the ICU and say, "ok, Big Girl Pants ON. Let's do this thing." And I did. And you are doing it too. As Chrissy said, tie a knot and hang on. Freedom day is so soon.

    Corinne, mama to Samuel

  9. I didn't read this until today and I am sure I would feel the same if I were in your shoes. I don't know how you do it!!!. I am so glad something is coming in the mail for you that I sent today. It will help you through those tough times I think. Keep going sister. You are training and enduring what christ has for you and us. Our reward is near- in heaven. You got this!!!! God has got this!!!!! In time you will feel a relief again my friend!!!

  10. Thank you for your posting. Your verses from 2 Cor. 4 were what Cindy and I (Laurie's mom and dad) needed as we deal with our sorrow. I am sure God will give you what you need when you need it. Your postings have given Cindy and I great joy. We and St. James Prayer Warriors will continue to keep you all in our prayers. Love is the greatest gift of all.

  11. Wow!!! Brings me right back to our last couple of weeks in the NICU. I was sooooo sick of that walk, so sick of the sites and parking garage, the adorable tiles on the wall, the cafeteria food, our RV we were staying in, just everything!!! My husband and I were staying in an RV, 5 hours from home, with one car- we had not been more than a room apart for two months. We were lucky we weren't killing each other but I was certainly ready for a little space. Our step down NICU (where the babies learn to eat, etc.) was called NICU II, the critical NICU is called NICU III. I was pestering our surgeon a couple weeks before we actually got out and he said "We are your heros in NICU III, and your jailors in NICU II." So, so true. You remember how far you have come and you are grateful for it - but bone weary of the routine. That's okay and natural and right. It is not a normal routine!!! Many prayers that you all get home soon!!!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  12. prayers to you Abby! "be their shepherd and carry them forever." psalm 27

  13. Abby-
    One of the nurses pointed me to your blog . . . What a beautiful way of telling the story of Parker and your family. I really appreciate the way you put into words what so many of our families cannot. I was wondering if I could share this post with other nurses and therapists so other staff can understand that feeling of being "done-zo".
    I'm still thinking of you guys and I hope that Parker is settling into a feeding routine. Remember I'm always just a phonecall away if you need me. Good luck! Penny, SLP

  14. Abby-
    One of the nurses pointed me to your blog . . . What a beautiful way of telling the story of Parker and your family. I really appreciate the way you put into words what so many of our families cannot. I was wondering if I could share this post with other nurses and therapists so other staff can understand that feeling of being "done-zo".
    I'm still thinking of you guys and I hope that Parker is settling into a feeding routine. Remember I'm always just a phonecall away if you need me. Good luck! Penny, SLP

    1. Of course!!! I will be happy to visit and read it in over-dramatic fashion if need be :-). We miss y'all down there!