Define Normal

Back in February we were in a meeting with PACT after our regular monthly ultrasound. They asked what our goals were for Chloe. We said live birth, get her healthy, get her home, attempt a new normal. 

New normal. 

That means there must have been an old normal. 

Day 80. Today is Day 80. Not that we're counting. 

And by now we thought our new normal would include Chloe being home with us. But alas, she's not quite ready, so that means we continue to get through this one day at a time till she can come home. 

So what does our new normal look like?

Packing. A lot of random packing. We have a 2.75 year old. She's still potty training. Even a few hours at the hospital requires extra pull up packing, doll packing, coloring packing. Trips home to Manhattan require laundry, though we're trying to keep half there and half here, wherever there and here may be.

  #new normal

Some days we don't have the kids. This was one of those days. I think it was around day 73. Or 72. Or 74. Either way, it was last week. And last week was a long week. And NICU life caught up to me. I didn't want to get out of bed. Had no desire to meet the day. This was my 11am self portrait. I was texting with two friends from my cotton sheeted hideout. One replied to this image with, "Bless your heart...that's why you have insurance and the nurses are well paid.". She encouraged me to just rest. Another, more blunt, friend texted, "You look like crud," then an hour later, "Your bum outta bed yet?". I actually love how the two responses were so different. One loved on me. One called me out, in a loving way. Neither brought me coffee, regardless of the fact that one lives in Manhattan and the other was halfway to Des Moines on a trip. I still blame them. P.S. They're both NICU/PICU Mama Alumni. They get it. No judging on their part. Thankful for that. 

**I hate selfies. I never take them. I think this was the 3rd time in my life I've done a true selfie. The point of posting this disastrous picture of myself is to show the real, unedited NICU life. It's draining. It's wearing. It's tiring. We both sat down around 3pm, after a late lunch, intending to go see Chloe, looked at each other and just sank into a deep sleep in bed. We just were flat out worn and couldn't bring ourselves to go back. We slept the afternoon away and didn't get back to her until about 8pm. You feel guilty when you're not with her, exhausted when you are, and doctors in the NICU start calling you out on not taking time for yourself. So you make trips to your happy place {Target}, munch on chips and dip and diet Pepsi at our favorite new taco place, take a nap, then back to the NICU to sit with Chloe till about 11pm. It was our

 pre-children-back afternoon and evening routine after sitting with her all morning and into the afternoon. Long days. #new normal

We thought that was our new normal, but then we got the kids back. 

{His father dressed him. He buttoned it himself. Team effort. #not new but totally normal}

We made our first Costco trip as a family, and have the lovely new membership cards with our hideous mug shots to prove it. Our attempt is to stock up, leave half the dry food in the RMcD house for snacks and breakfasts and the rest in Manhattan for days when we're home. We'll see how this goes. Kids, I hope you like Goldfish 'cause we bought it in bulk. #new normal

Discovered the joy of caffeine in bulk. Well, that and my friends fake coffee, chai latte, in bulk. 

Walked past this sign on the way back from taking child #1 to the bathroom, only minutes after I took child #2 to the bathroom. Sign made me slightly nervous. 

We attended church today for the first time together since Easter. Well...together is a relative term. We were missing a very important new member of the family. Felt good to be back. Felt horrible not to have her. I remember when our other two were born. I loved snuggling them during services and singing the hymns in their tiny ears. I longed for them to hear these Words of Truth even at a young age. I long to do that with Chloe too. With all three kids, church was one place they ALWAYS kicked and moved in the womb. Two were still kicking and moving today to the point at which I had to take them down to nursery. Came back up to sit through the service, only to find myself highly distracted by the many, many new babies. Something is in the water in this town. And Chloe was in that group. These other babies were supposed to be her playdates while I chatted with their mommies and let the other littles run wild in bare feet this summer. Adjusting to the fact that they all have their babies home and in their arms, and my sweet child is still in the hospital, not yet breathing real, fresh, non-sterile summer air. Me sitting in church watching babies be snuggled up on shoulders. You know the pose-baby over shoulder, nuzzled into mama's neck, mama's hand patting their tiny back, mama's hips gently rocking to the rhythm of the patting. I've thought about this pose often lately because it's one of my favorite new baby holds...and yet, I find myself thinking, "I wonder if I can put her on her belly with a trach? Can I hold her on my shoulder to burp her with a trach? Can she burp with a trach? Guess I won't need burp rags." #new normal

How I distracted myself from the many babies surrounding me during church service today. My weird attempt to stay grounded in the Word these days.Took pics of them tonight-ignore the naked ugly ruined pedicure, courtesy CiCo public pool. Must find matching coral colored polish. Frames purchased today for a quick DIY-therapy mantle redo tomorrow while the kids play and Daddy's at work. 

I took the kids to the pool this weekend. It's another one of my happy places. Target+Pool=Bliss. Today I attended both back to back. It was amazing. I stared at chalkboard stickers in aisle 10 and considered how to label Chloe's trach care stuff when she gets home {#new normal}, until the kids told their mama to snap out of it and get them to the pool. 

Buying Chloe a pretty dress to wear once her PICC line and midline are out {can't wear clothes with them right now}.  Buying clothes with no clue when our sweet daughter will fit them or be able to wear them...#new normal

We finally got to the pool at 3pm. While paying for the admission, I was searching for where I hid the pool money and Isaac talked the poor lifeguard/cashier's head off about his sister in the hospital that the doctors take care of and are making her better until we can bring her home. His words, utterly unprompted. I think the cashier about cried. Bless her heart. She just thought she was taking money today, not counseling a four year old on his sick baby sister. #new normal

Isaac learned to put his head under water, hold his breath, and then stay under all in about 30min. It suddenly snapped and came naturally to him, and now I have a little water buddy on my hands. He can't get enough of the water. Felt amazing to watch my little man learn something new. Incredible rush of love to see my son learning and experiencing something {swimming underwater, then coming up to tell me the water is blue underneath as well, with joy in his goggled eyes because to him, this was new}.

It was just my little dude and I at the pool on Saturday. He loved our "mommy-Isaac date" day. I asked him if he was enjoying it and he said yes but he wanted to do something else after we swam. I asked what he'd like to do to continue our date and he said, "We could go to Target!" Little man after my own heart. But no. Mama doesn't have a change of clothes, and she's already scarred the patrons of CiCo pool with her postpartum swimwear. She need not do that to the patrons of Target either. 

We ended up being surrounded by many loved friends who eventually showed up during my sunburn {Hint: ear infection antibiotics=side effect of staying out of sun. Learned that one the hard way}. It was good to see them all, talk, watch the kids swim and play. But it was also hard. Hard to think about how often they've probably gotten to do something like the pool this summer, whereas on Saturday, that was my second trip this summer to the pool with my children, the first trip being last Tuesday. Hard because I watched my friend hold her sweet, adorable, chubby little almost 4 month old, and fought back tears while chatting. She's an amazing friend who did nothing wrong. Just had a baby. Just enjoying her baby and a day at the pool. And yet it was hard for me to talk. To engage without my mind wondering back to my Chloe in her crib in her tiny room in her first home. So I fought back tears in an effort to try the old normal and pretend everything was fine. I needed to or I would have lost it. And I'm not pretty when I lose it. I've been known to have "a moment" with the hospital chaplain assistant, a nurse or two, and a charge nurse all in the last two weeks. Didn't want to get all emotional during a day at the pool. Sometimes you run out of the room in tears to hide and be alone. Sometimes you suck it up and hold the tears back because you don't want to deal with the rawness of it. That was Saturday for me. #new normal

And now it's 2:18am. Exhaustion has finally set in. Time for bed. And then get up and do it all again tomorrow. The crazy, chaotic cycle will continue tomorrow, with Daddy at work till afternoon, then loading up the van yet again for another week back in KC. 

We can do this. We're a family. We're in this together {keep your stick on the ice!}. We've got this...only by the grace and love and peace of God. Thankful His arms are strong enough to hold us all.

I leave you with a few funny selfies from me and the Abbers...