What I didn't know was that, two weeks later, I'd be standing in a hospital hallway watching my little one, a tiny form on a giant twin-sized gurney, blurred by my own tears, wheeled away through the double-doored path towards surgery.
"God, I don't even know this baby yet! I don't even feel like his Mommy yet!" ran through my head as the doors closed. As we waited in the waiting room, I realized that THIS was what parenting meant. It meant that I would change everything and do anything for the benefit of this little guy. It meant that my husband and I would share-sleep on one foldout chair and get up every few minutes to give him his pacifier and comfort him in his pre-surgery hunger. It meant that it no longer was just about us, but about this new, helpless little screaming life. Our little Isaac.
He'd been vomiting, vomiting, vomiting the past few days and we didn't even know, my husband and I, how small he'd become until there we were in the hospital scrolling through the pictures on our camera. We saw him every day and we didn't see the change, only the stench pile of laundry by our bed since, in the past 24 hours, we'd had to use every towel in vomit clean-up. "What?? How did we not notice?"
"A simple procedure." "The best you could ask for, if you'd ever ask for surgery on your baby." "Don't worry, Mom. He'll be fine." "Pyloric Stenosis. I had it when I was a kid. See my scar?" The medical staff gave us all the best words.
The story has a really great ending. He was fine! They sent him home with a pumpkin-shaped piece of gauze on his baby tummy, and my MOPS table delivered meals and held this Mommy's hand through my baptism-by-fire into motherhood. I couldn't help but revel, "God, you brought me to that place for such a time as this. Thank you."
Sadly, my work schedule changed and, after that first semester, I was unable to attend MOPS for a long, long time.
Fast forward five years to September, 2012. I am now a veteran mother. I had quit my job after my third child but waited a year before rejoining MOPS because I was afraid it would interfere with my home school schedule. But, here I am, a fourth on the way in December and - to heck with the home school schedule because I am so much in need of a break and I have another one coming - what am I gonna do?! A real mindset flip. I'm desperate, but at the same time I wonder if I should have signed up in the first place, if I really have the time for this.
My worries are swept to the side as, all that first semester, I come and breath deep of the wisdom of others, and eat well of all those breakfasts, and relish in my 2 1/2 hours of childlessness. Midyear, before the second semester begins, my baby arrives, the day after Christmas nonetheless (8 days late!), and we call her middle name Joy because the delivery room buzzes with it just after her birth, and my eyes meet in ecstasy with my husband's - Annika Joy. She completed a perfect boy-girl-boy-girl pattern for our family and we gleefully brought her home, excited to start life as a family of six.
Fast forward a little further to March 12th, 2013. My baby is not doing well. Two weeks earlier, at her two month check-up, the doctor labeled her Failure to Thrive. She won't nurse unless I'm laying down with her, and even then she only eats half as much as she should. She sleeps all the time. They thought it was my milk output, so for two weeks I've been popping fenugreek, pumping between feedings, and my husband even took three days off of work so that I could solely sit in a rocking chair and nurse. She's barely gained. I am bursting with milk. This is not the problem. No one knows what is. I show up at MOPS exhausted, but glad for a reprieve.
I look at the schedule and realize, with mixed emotions, that a doctor and a child life specialist are on the docket for the day. I'm filled first with frustration, then relief: not more doctors, I'm here for a break....but maybe this is perfect timing...maybe this is just what I need...maybe they can help. Up to the podium they walk bringing lots and lots of doctor advice: how to best relate with your doctor, how to list out questions so to use appointment time wisely...yes! I am a copious note taker, so I'm scribbling and am in awe of the fact that this message came to me today, of all days! But then the topic shifts to inpatient matters: what to do if your child is admitted to the hospital, how to make it less scary for your child through play, I'm still writing but my heart disconnects. This has nothing to do with me, and definitely nothing to do with any of my kids!
"What if it does?" Bang! The thought slammed my brain. I vividly remember the minute I stopped listening and panned the room which was filled with at least a hundred other women. There were so many of us!
"No, God. This isn't for me. This is for one of them. Why would this be for me? It can't be. I have no reason to need this!"
MOPS ends. Two hours later, Annika has a scheduled weight check with her pediatrician, Dr. Parker. She's still not gaining. She's lying on the exam table and he looks at her, perplexed.
"Does the left side of her chest look higher than the other to you?"
Squinting, "Yes...it does a little." I respond.
"I'm ordering a chest x-ray. Come back when it's done."
I carry Annika across the way to radiology. The machine buzzes. Even the most untrained eye can see that the entire chest cavity is filled with heart. I exclaim something to the technician about it's hugeness and the badness of that, he agrees.
What???
Across the building again and into the little room where I feel set apart, alone with my babe on one side of the room, as the doctor and nurse stand on the other, and he tells me that her heart is clearly enlarged, but we can't determine why until she sees a cardiologist and has an echocardiogram and the words sound so calm and clinical and his face is so calm, but the meaning....the meaning.... is devastation. What??? The nurse calls cardiology and they book an appointment for my little one in nine days. Nine days, can she wait that long? How will I live through the next nine days?!
I walk out of there, stunned. I call my husband, my mom, pick up my other three kids from and talk to my in-laws. I'm numb. I drive home. I google "enlarged heart," a mistake. My husband walks in the door and I'm a melted mess on the bed, laptop by my side. We're eating chicken for dinner. Doctor Parker calls. My husband answers. I'm in no shape. After we'd left our appointment earlier, the doctor had found out from the nurse about the nine day wait to see cardiology. He referred with the radiologist and they both agreed that this baby should not wait that long. Dear Doctor Parker spent the afternoon arranging for the right group of people to meet us at the ER. He called us around six instructing us to go right then. We file out the door and down the stairs, leaving the chicken on the table.
Since we are expected, Annika's tiny armbands await her.
"Oh! Is this our little CHF baby? Ooooh, how cute is she?!"
My heart drops. CHF? Congested Heart Failure? No one had used those words with us, and the nurses flung them around like she had a mere splinter. Why do we have to wait if they expect us? I'm huddled in the furthest corner of the ER next to my husband, holding my baby, cradling my baby, weeping into my baby. Clinging to her life. I turn her around, place her on my bent knees. She's awake and smiles up at me the sweetest smile. She knows me. She trusts me. She doesn't know she should be afraid and that everything's different and that this is something I can't protect her from. I look up. People are watching, wondering, pitying.
Finally, we're called back to a room. The technician arrives to perform the echo. I can't do it. I can't watch. I don't want to know. I want everything to be normal and healthy again. But, barring a miracle, I know that's not the case. I'm not ready. I need time to pray. I tell my husband that I need to go to the bathroom. "Now?" he wonders. Yes, now. In that one little square of a room, I lean against the wall, arms lifted high. "Please, God! Please, let me keep this little girl! Let me be her Mommy here on earth for many years. Oh, God. Please!"
"It's good news, Chrissy!" my husband, faithful and strong, takes my hand as I walk back into the room.
The technician explains the situation, a VSD - a hole in her heart. He tells us, "This really is the best situation for a heart condition. If you're going to have a problem with your baby's heart, this is what you want!" Once again, we got the best. The best surgery for Isaac, the best heart condition for Annika.
I wish it ended there. I wish I could tell you that they gave her medication and the hole healed and all was well from there on out. But the story of my fourth has a different ending than the story of my first. This time, the story didn't end quickly or well. In fact, things quickly fell apart.
Within minutes after the VSD diagnosis, Annika is admitted to the hospital. Over the next month, she spends twenty nights in the hospital, and five nights the following month. She regresses in her eating to the point where she needs an NG tube, a feeding tube through her nose followed, in May, by a Gtube, a feeding tube in her stomach, which is surgically placed. A whirlwind of events. She vomits 5-10 times each day. I administer eleven doses of medication each day. For a time, she doesn't tolerate her feedings and we have to keep her connected to the feeding tube on a slow continuous drip for 24 hours a day. Before the tube, she is so small, we can't allow her to cry or be cold lest she lose calories. I keep an extensive notebook of her daily weight, output and input, questions that I have and doctors' advice. We see doctors galore. She undergoes angioplasty in her heart. And remember I have three other kids to care for and I home school?
Our lives changed almost instantaneously from normal life to a medical swirl and a focus on this precious, sick child. Over the next three years, three more issues are discovered in her heart. In fact, just this last spring, the cardiologist told us that her particular grouping of heart issues is called Shone's Syndrome.
Can I tell you that I weep?
I do.
But can I also tell you that I hope? What a journey it has been. I have walked in the depths. But, God has been faithful. He has held me, my little girl, and my family. I have worked, and prayed, and striven like no other time in my life for the health and life of my daughter. Our family has walked through the shadows and survived!
On October 23rd, 2014, Annika saw her GI docter for the last time. Dr. Nanjundiah ordered us to taper off the G tube for the next week and than to stop completely! She exclaimed to me that it doesn't always happen this way! She's seen families fall apart and babies not thrive because their parents don't listen and communicate well with the doctors. She noticed we were different. My husband and I weren't fighting as other parents did, but were growing stronger. She gave me the highest honor I've ever received when she wrote on the paperwork, "Congratulations to mom-dedicated mother of 2014." On January 29th, 2015, the Gtube came out!
Unfortunately, it's not all victory. The heart condition will never leave. The shadows may grow darker. Just this year, in June, Annika had angioplasty again. She is well for a time, and than her heart overworks and I am reminded of the frailty of her life, of all life. Before angioplasty, she is tired, sweating and pale. After angioplasty, she is life renewed. I praise God for the hands and minds of these beautiful people he's created in his image who have found creative, innovative, and genius ways, medically, to save my baby's life, over and over again.
We don't know the road ahead. If I allow myself to wonder about it all, it's easy to despair. Yes, she will need surgery eventually, in fact, she'll need multiple surgeries. In my mind, though, Annika standing here today without yet having had surgery is a small miracle in itself. In January, our family stood, poised and ready, for the cardiologist, Dr. Sangodkar, to want to schedule her for surgery. But, instead, Annika's heart improved! We vouched for angioplasty, and mercifully, it has been sufficient. If I look ahead to all of the unknowns and probablys, I crumble. But today, with God's help, I can handle today. And I pray for the miracles, small and large.
Throughout these past years, I don't even know how many times I've looked back at that MOPS session in March of 2013. Sometimes I'm laughing at the irony, sometimes I'm wondering in awe at the perfect timing of it all, and sometimes I'm sad...but I don't know why. I think I've pinpointed it. That day, those moments in sitting with my sisters, listening to that doctor, eating that meal, those were my last hours of "normal." Yes, my baby was sick, but I thought she was "normal" sick. Those were my last hours before I knew the heartsickness of truth, a loss of innocence. Those were my last hours of the old me, of my former life. A kind of last communion. I can draw up the memories in a heartbeat. I remember her, that old me, before she knew!
Together with my church family, the MOPS ladies brought the gifts of meals to the "new-me's" family for almost three months straight. I don't even know how many meals, or who brought what and when, because most of the time I wasn't there and, an open apology, I didn't keep track or write thank you notes.
Each year when I sign up for MOPS, the question of whether or not I should is no longer there. I go, year after year, because I usually need to hear whatever it is that is being discussed that day, on that day, and I need, oh how I need, to have other ladies to walk with through this tumultuous life-path. And I am grateful. I am so, so very grateful for God's provision in the midst of hardship. Lastly, and most of all, I can't help but revel, sometimes outloud, "God, you brought me to that place for such a time as that, for such a time as this. Thank you!"
