I have a love/hate, push/pull, attract/repel relationship with NORMAL.
My whole life I have tried my very hardest to not be NORMAL, average, plain jane, blend in with the crowd, follow the sheeple. Not that I am not, by many people’s standards, some semblance of normal, but in my own mind, I’m doing things my own way, and they aren’t always NORMAL.
And yet I find myself suddenly driven by this desire to have a NORMAL baby. It has truly only very recently occurred to me that she is not, in fact, as normal as I have led myself to believe. She does not eat normally, she does not sleep normally, she doesn’t poop normally, nor does she play normally. It’s not normal to have to break the seal on the baby’s bottle for her every three or four gulps so that she doesn’t choke. It’s not normal to have a 4 times a day daily med regimen. It’s not normal that I know all the back staff elevators and can tell nurses where to find things when we’re inpatient because I know the routine so well. It’s not normal that we have to have a PICU resuscitations specialist follow us around to our procedures with a large backpack containing life-saving devices because my child has been labelled “high aspiration risk”. It’s not normal that Kendall has not met any normal baby milestones, but she can now hold her own nebulizer mask and knows to hold her arm still when they are switching out IV tubes. No 7 month old should know that. It’s not normal that Karissa’s favorite thing to do is to give her baby an IV and flush it with a saline syringe (with real equipment). This is not normal. Our lives are not normal.
it’s just not normal.
And i am THIS CLOSE to having one of those fits that 3 year olds are so prone to throwing, where they are flung on the ground and kicking and screaming and their faces are red from howling and tears streak down their face and they are yelling at the top of their lungs “ ITS NOT FAIRRRRRRR!!!!!!!!!!!” That is how i feel today. It’s not fair. It’s not fair to Kendall and its not fair to the girls and its not fair to Ben and its not fair to ME. Its not fair and it sucks. and i want to color on walls with a huge black crayon and just SCRIBBLE my anger and frustration out and step back and look at the handiwork of my little fit and say – there, I feel better now. Except I know I probably won’t. Ok maybe a little teensy bit.
But after i have that fit, I will still have to get up and face the fact that RIGHT NOW, life is not normal. But tomorrow we could be one step closer to that.
Kendall goes in for surgery at 10 am tomorrow morning to have a procedure called a Nissen fundoplication, a gastrotomy tube for feedings placed, and multiple site biopsies taken. At least I have had a few days to adjust to the fact that she will be having this. But now its real. She’s on “the schedule”. Papers have been signed. Pedialyte has been started, feeds have been stopped. My baby’s smooth, if slightly distended, belly will no longer be the same tomorrow. They will be wrapping the top of her stomach around the bottom of her esophagus in and effort to keep food IN her tummy and OUT of her airway and lungs. She will have a little button placed directly through the skin into her tummy through which food will be pumped so as to lessen her aspiration (swallowing food into her lungs) from above. They will be taking biopsies from various places in her intestines in an effort to find out why she reacts to EVERYTHING we have tried to feed her except this protein free elemental formual, why she continues to have GI bleeds, why she has such a hard time passing stool on her own without the help of 3 medicines, 2 probiotics, and daily suppositories. they will be taking a biopsy of her thigh muscle to send off for analyzation of her hypotonia, as that is playing a key part in not only her inability to meet milestones (roll over, sit up, bear weight, etc.), but her inability to swallow correctly, digest correctly, pass stool correctly, breathe correctly. The muscle biopsy will look for a possible muscular dystrophy or myopathy, as well as certain kinds of metabolic breakdowns/deficiencies to see if that gives us more of a clue about WHY we have such a non-normal child!
I am anxious now, on this side of surgery. I know she will wake up tomorrow in a lot of pain. I know we will have a rough few weeks of adjusting to a new way of eating, sleeping, playing. I know that these procedures are not without complications. But i have to keep looking ahead. I have to look ahead to the week school starts, and have a large degree of hope that we will NOT be inpatient again that week. I have to hope that her lungs will have a chance to fully recover without a daily bath in stomach contents and acid. I have to hope that she will begin to be able to use her energy for LIVING instead of just staying above baseline. I have to hope these things because thinking about the huge decision I have had to make for her now just crushes me.
So baby k – someday when you read this, know that I did what I thought was best for you at the time. With all the information I have, in my head and in my heart, I will hand you over to a nurse to go have your insides transformed. I will pray that Jesus sits in that room with you, singing songs of peace and love and comfort over your little body, and guiding the hands of the surgeon. I will take pictures of your smooth unscarred little belly today and hope that someday, you will have your baby belly back with no buttons sticking out of it. I will send you off with a wish that this is our last stay in the hospital for a long long long time. Tonite I will sing your favorite songs to you as you drift to sleep and hope that they stick in your head when you are off in anesthesia=induced dreamland tomorrow. Please know that I have learned every medical thing I could in the past few months/weeks, i have pored over internet medical articles, asked other moms, called every doctor and nurse I know and bugged them for their opinions – and it comes down to this – we make this decision today to save your life. You have done SO GOOD, baby, learning to eat and breathe at the same time. In spite of all your sicknesses and uphill battles with weak muscles and low energy, you have finally started packing on some real baby chub. But I know its a hard job. I know it wears you out to finish a whole bottle and get the calories you need to be able to do it all again in a couple hours. I know your body is getting tired. You did a great job getting yourself strong enough to handle this surgery. And now we can give you the support that you need. We can stop your poor lungs from being damaged by further pneumonias so that SOME DAY, someday soon, you will be able to run and play with your sisters in the yard. SOME DAY you will be able to enjoy your first taste of Coke, and Portillo’s chocolate cake. SOME DAY you will look back at this, and wonder what I thought was such a big deal. I can just see you rolling your eyes at me now, thinking “geez mom, I’m ok. you don’t have to cry about it!”
But until that wonderful day comes, little one, hold on. Be strong. I am making this sign for your crib tonite and praying it over you:
The God of all Grace, who called you to His eternal glory in Jesus Christ, after you have suffered a little while, WILL HIMSELF restore you, and make you
STRONG – firm and steadfast. (1Peter5:10)
Thank you to all of you who have so faithfully prayed for my baby for these past months – I know your prayers will cover us tomorrow and the next few days as well. Thank you to those of you who let me cry on your shoulders today, and let my guard down, and just be real – even if that means I am scared to death and more nervous than I have ever been in my life.
We will update the blog and/or facebook as soon as we know how it all went. Please feel free to email or call or send me a carrier pigeon message. In some way, answering questions helps. I do not know how long we will be in the hospital after tomorrow. For those who have asked – we have childcare mostly taken care of through Wednesday. Thursday and Friday are still up in the air, both for us and for what we will need for the other 3. For those who have asked, we are up at Lutheran General Children’s in Park Ridge. If you drive like Ben and I, it’s only about a 45 minute drive when other idiotic drivers are not clogging up the roadways at 4 pm on a Friday afternoon.
I hear Kaylen waking up now, so its time to head back up to the hospital to switch shifts with Ben. Leave a note for Kendall – I read all the comments and verses and prayers to her when its time for bed. today is her 7 month birthday too. What an awesome way to spend ANY kind of birthday, right? Being “prepped” for surgery. Always a good time!
Thanks so much to all of you – for the support, friendship, love, and prayers.