Thursday, June 8, 2017

The Greatest of These Is Love

Y'all. I was cleaning up the house tonight and got into the nursery closet. I have all of the cards from both babies and kept saying I wanted to organize them, so tonight ended up being randomly selected.

As I dug into AL's side of the stash, I was overwhelmed with the feeling of love. I read through cards so many of you sent. I found contracts with the funeral home. I thumbed through books we were given about infant loss. These very things held us together during that difficult time.

I put my mind back there, to the place we lived in a mere 8 months ago. My stomach lumped to my throat as I heard AL in the living room with her dad as I read through these reminders of how close we were to not hearing those laughs or kissing those chubby cheeks.

I sat there in that little closet reminiscing too on the absolute love that filled our souls then and still does. Sometimes we don't realize how much a card or phone call or smile means to someone. But for me your words, your love, kept me going and gave me strength. And as AL came into this world, the cards and sweet gifts didn't stop. You all have loved us so well.

Maybe I've said thanks before, but I can never say thanks enough.

I get tired and frustrated. Sometimes I complain about checkups and blood work and prescription refills. I would do a lot of things just to get a nap. I may have even flipped out on the girl at the Wal-Mart pickup today because I absolutely did not want to go inside with 2 babies. I've told Henry too many times that I have household chores to do and I can't read a book right then. In the middle of the night my first emotion of being hurled from my sleep is not "Oh, how blessed we are."

But my goodness. How much was I reminded tonight of the loved poured on us? Love is the greatest gift God gave us. And y'all gave it abundantly (and you still do). Thank you.

AL says THANKS too for the love and prayers!

Friday, June 2, 2017

Walking the Green Mile

Finally we are headed out of Houston. It was a busy few days, and although we are thankful for the care it is time to go home. (Well, actually on to Austin, but then HOME!)

We started Wednesday at the pediatric dentist as AL's physical therapist noticed she has a lip tie. The dentist confirmed this and also noticed a tongue tie. So I got to help hold her down while the dentist lasered them both. I had in my mind this would be painless for AL. It wasn't. At all. It basically cauterized her. So I felt terrible about it all despite knowing it had to be done. That little baby has been through it already.

The next day AL had her first big girl ultrasound. Obviously they did a gazillion when I was pregnant and a couple in the NICU, but this is the first once since. She was such a big girl watching Paw Patrol and never had a care in the world. She is already such a sweet, calming spirit. Lord knew that we needed that.

Getting ready

No worries when cartoons are on!

Her nephrologist was very pleased with her progress. Her kidneys are growing well! Her right kidney is still good and the left is still dilated. But, hey, all you need is 1 so we will take it for now.

We had been concerned that she would need a low sodium diet, but based on her creatinine and electrolyte levels both the nephrologist and dietician said for now she can have a normal diet. This was great news.

I remember in college I went on a few dates with a guy who could not have sodium, and the more I thought about it the more I didn't think that was a possibility for me. So, obviously, relationship ended. But I felt so bad for this guy having to cook everything from scratch and never getting to eat pizza rolls. That sounds ridiculous, but it worried me with AL. I am thankful that at this point we are throwing extra salt on our chips at Dos Compadres.

As we got off the elevator we decided to pop our heads into the fetal center to say hi to Dr. Johnson, our Houston fetal specialist (and co-director of the fetal center) who first told us her condition was no longer fatal, and Blair, the sweet genetic counselor who saw us through the amnioscentesis and genetic testing (and even helped us find housing). Dr. Johnson had convinced us to deliver in Houston despite some talk that it may not be necessary, and every day of my life I'm thankful he did. We had some rough patches after delivery while there, but once I called Dr. Johnson he personally ensured we were well taken care of. (Sadly, McDreamy wasn't there yesterday.)

Dr. Johnson, our Houston fetal specialist

Blair, our Houston genetic counselor

This morning we had a checkup with urology to mostly discuss a possible abdominoplasty. While we had hoped this would happen near her first birthday, it looks as though we will keep monitoring and discussing until closer to her second birthday. He also talked with us about going to his clinic instead of the medical center and getting back to our NICU nephrologist instead of the one we were placed with after her hospital stay. For this we were thrilled!

I have lots of feelings about Houston. The medical center brings out the most emotion. Last time I could barely handle it, but this time it was almost therapeutic. I love Houston and I hate it.

Houston is too big for me. All the people on top of each other in a cloud of humidity just makes me feel disgusting. It is where we learned AL has Prune Belly and where I stormed out of the NICU mad and in tears. It is miserable.

But it is also where we spent our last days as a family of 3. It is where we were told officially God gave us a miracle and that AL would make it. It is where I made a friend in the girls at Magpies in Bellaire. It is where our children first met each other, first hugged, first knew how to instinctively love. In these ways I love that place.

The day we packed up our house in Bellaire to go home to Midland, I sat and cried. So much had happened. We had lived a mere 3 weeks in that house but our lives had been changed forever. It was our bubble and a time in our lives that stands out from the others. No comforts of home or friends with dinners greeted us when we brought AL into that little house. It was the place where the only people who knew our family of 4 existed was us. So when we go back and are in that life again, it is as if our normal life pauses and our Houston life comes out of a dream. I feel like I didn't just fantasize that it all happened. Our reality becomes real again.

On Thursday morning Cash took Henry to Hermann Park while I took AL to her ultrasound. As I carried her down the windy skybridge, I reflected on the other times we had been on the same walk. The first time I ever ventured down that long walk with her was as we walked in as 2 young, nervous parents going in for the induction. Then for a week I walked those halls without her. Those walls saw tears of sorrow as I left my baby girl in the hospital, tears of fear as we learned of her diagnosis, and tears of joy as we finally got to take her home. This time she and I walked in together again, and I felt God remind me of all the times He had been there on that walk with us. That walk, which used to be my green mile, is now my parade of triumph.

Walking the skybridge together again

Hermann Park
Picking up my stay at home dad from the park

Houston, until next time...

Avery Jane