Saturday, September 19, 2015

When I am afraid...

I wrote this blog post before Grayson's first anatomy ultrasound. Today it is Saturday, Grayson has been in the hospital since Wednesday, staring down a surgery on Monday, on the day when he will turn 2 weeks old. 

Today I remembered this blog post I'd written but never published and it seems appropriate to share now. I'll share Grayson's birth story and this hospitalization soon. 

You can also get a little peek into life lately on my Instagram (the link is in the sidebar. If you're viewing on a mobile device go to the bottom of the page and tap the link "view web version" to see the sidebar).

Today I am so thankful for the way God has been preparing my heart for this new journey we have begun and how the roots of my faith have grown deeper over the last years and months and hold me up now in this new season.

Today is my ultrasound. Daniel, Eli & I will get to see our sweet little ninja baby and hopefully we'll find out if this is a boy or a girl. 

I am feeling all kinds of nostalgic, I hold Eli's hand and feel the preciousness of each moment, remembering those months before Eli was born when Josiah who was just a little smaller than Eli is now, snuggled into the crook of my arm and slept with his head against my big pregnant belly. I remember taking a video of Josiah telling our family that he would get to have a brother. Eli is hoping for a similar moment. He says he is going to have two brothers and that this new baby will be named Jake. 

I feel excited, so excited, and yet in the back of my head, a little bit terrified.

I have found that with each pregnancy  between the excitement of announcing our big news and waiting for our new baby to arrive there is a low grade anxiety that settles in for the long haul. This time around I worry about the month that I was pregnant and didn't realize it and all the coffee I drank during that month. I worry every day if this will be my last day to carry this child.

I got to my 2nd trimester, breathed a short sigh of relief and quickly picked up new strands of worry that I knot and braid in my subconscious. I have had almost daily Braxton hicks contractions starting around 14 weeks. I recently started feeling the baby move and (s)he feels like a strong little ninja and this  reminds me so much of my pregnancy with Katie-Abigail...

I remember I started getting Braxton hicks around 18 weeks with her and totally freaked out. I sat in my OB's office asking what was happening. She reassured me that this was not uncommon and not to worry. It was not the first panic-induced conversation I'd have with her. A few months later I called her off-hours  saying I felt like I was going into labor and I hadn't even hit 36 weeks yet. She said "get in a tub of warm water. Calm down. Call me if things don't get better." I spent the next months in and out of that tub. 

Thankfully Katie-Abigail wasn't born until around 38 weeks but she was posterior. It was the most horrible labor I've ever experienced. Telling someone about it awhile later my husband confided that he thought I was going to die during that labor. 

She surprised us by hiding her girl-parts through three ultrasounds. The tech told us at our last one that he was about 75% sure that we were having a boy. We picked out a beautiful girl name and I slipped in a pink onesie into the bottom of my hospital bag "just in case".

My first memory of Katie-Abigail after her birth was when they put her on my chest, I spoke to her and she turned her little head, full of dark hair, and looked at me in my eyes. 

A day later I came out of the tiny hospital shower and my husband said "The pediatrician just brought her back from the nursery. She failed her hearing screening." At the time I knew nothing of hearing screenings. I don't remember either of my older girls receiving hearing screenings. He said "failed her hearing screening" and I heard "she's profoundly deaf". 

Sitting there on the hospital bed wrapped in my husband's arms, I remeber Daniel's strength in that moment and his positive outlook set the tone of the next weeks as I walked the halls with my sweet little girl and mourned for all of the things we would never do together. I remeber feeling especially sad that she would never hear me read a book, the way I had read to her sisters, the way my mom had read to me. I was sad because I knew some things would be so much harder for her than for her sisters. We checked out "Signing Time" DVDs and learned some additional signs beyond the "please, more and all done" that I'd taught my older girls. 

By the time we finally got into the ENT we were 95% certain that her hearing was fine. Watching the doctor peer into her tiny little ears (and they were super-tiny!!) and say "she's perfect. She can hear just fine."  I breathed a huge sigh of relief. 

But there was also a part of me, a little tiny corner of my heart that was disappointed. I felt like I had received a temporary membership card for the tight-knit community of moms of children with special needs, and in that office the doctor took it back. I had three perfect, normal kids and while I am really really thankful and happy for them that we have not had to endure the struggles that we would have if Katie-Abigail had been deaf, I also knew in that moment that we were missing out on something special - friendships our family would never form, people we will never know.

Looking back I wish we had known to ask for additional testing, I had never heard of the term "auditory processing disorder" I thought sensory integration disorders were just for kids who ripped tags out of their clothing, demanded that their socks be in a perfect line and screamed about stuff that other children accept. I didn't know we'd keep on struggling with Katie-Abigail, just not as obviously as with hearing loss.

With this new baby people ask us all of the time, "so are you hoping for a boy or a girl" and my husband has the same automatic response "I just want a healthy baby." I sometimes think "but what if this baby is not? What if this new little one has special needs?" 

I am all about non-invasive tests. Bring them on. I want to be as prepared as i can be. I would never had known about Eli's hydronephrosis if he hadn't had that 30 week anatomy scan and while it has barely changed the landscape of our lives or affected his development, we have added a yearly pilgrimage to the children's hospital to spend the day up to my eyeballs in gratitude for the five healthy children I have been given. 

During the months of anxiously waiting for our first scan - there is that mother-bear of worry lurking right beneath the surface "what if something's wrong?" But there is another piece of my heart, a braver piece of me that says "so what?" Being afraid isn't going to change anything, fearing the worst isn't going to keep it from happening. In the quiet moments I sometimes find myself bargaining with God "let it just me this." "Let it only by that. I think I could handle that." Whatever!! No matter how normal or special this baby turns out to be - it will all be more than I can handle at moments. Since when did I decide that the only life I want to live is the one that "I can handle"?

In the calm before this ultrasound appointment I surrender all of my expectations. I wait hopefully for great news about our perfect new baby, kicking inside of me. I lay down all of my fears. I know whatever happens next, easy or hard - God will be with me, carrying me. Right now on the radio Kari Jobe's song is playing  "I am not alone. You will go before me. You will never leave me." and this is exactly what I need to hear.

Grayson also has hyrdonephrosis (enlarged kidneys) but he also has Grade 5 vesicoureteral (kidney) reflux. Grade 5 is the highest grade of kidney reflux there is and does not resolve without surgery.   Grayson's first surgery (Cutaneous Vesicostomy) is scheduled for Monday.

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