Dysfunctional Ever After

On Monday, April 9 our perfectly pudgy baby girl is going to have surgery. A ureterostomy, to be specific, which will allow her right kidney to drain out without going to the bladder first. She will have a small hole under her belly where it’ll drain into her diaper.

Her second hole/stoma (we really need to find a better name for it) will solve some issues, and possibly create others. We just don’t know what’s going to happen quite yet. Hopefully she won’t get any more UTI’s. But I’ve found a lot of instances where it has given babies kidney infections, and our doctor has already warned us about it getting clogged and needing to cath her ourselves.

And, well, I’m not okay. Everything is not fine. And that is okay.

It’s the unknown and lack of control that is killing me, making me want to pull my hair out one by one. It’s the unknown that gives me anxiety attacks wondering how I am supposed to care for a sick kid and have a job or a life at the same time. And all of that anxiety and anger quickly turns into guilt when I remember the moms I see in the hospital with kids worse off than Temen. I feel ungrateful. I feel undeserving.

Just today, our nurse at Temen’s primary clinic asked me “Isn’t Dr. [Surgeon] amazing?” I said yes, he is. Because he is. He goes above and beyond to take care of his patients that need him. Then the nurse told me that he sees her son, who has a tumor on his pancreas.

Everyone has their shit, and someone will always have it worse than you. But that doesn’t make it any easier.

When people ask me how we’re doing, I say we’re hopeful. And we are. But we’re also incredibly anxious. We’re worried. We’re confused.

We’re in a season that is testing our faith, patience, strength, parenting, and marriage. But it’s just that, a season. Temporary. All of this is temporary. The not knowing, and even her second hole (seriously, we need a name!), all temporary. All things that we will hopefully look back on and think “well, that happened” with a shrug.

While we wait for that moment, that shrug, can I ask a favor? Can you pray for us? Could you pray that the surgery goes well, that her surgeon has steady hands and recalls all the information he needs, that she isn’t scared, and that our family finds peace, and comfort in His strength? That’s all we need right now. That, and a healthy and happy baby. 

xxoo,

Samm

Temen was born with hydronephrosis and ureterceles. If you were to make anyone pick from a menu of congenital defects, all of them would pick this one – including me. She doesn’t have any heart defects, she doesn’t have cancer, she has a few kidney and bladder issues. It’s fine. She looks great.

That is what we hear all the time: “She looks great.” And while it is comforting to know, it just makes her kidney issues that much scarier for me. This weekend, there were no signs or symptoms that her sodium levels were dangerously low. It just so happened we stopped in the hospital because she had a low grade fever and needed to be checked for a UTI because of her kidney/bladder issues. She had no UTI, she looked great, and her fever slowly went down without any intervention. But in the process of checking for a UTI, the resident doctor opted to check a few of her kidney functions too. She knew Temen’s history, so thought it was worth a shot. Everything came back okay, except her sodium.

It was so low that another doctor came back and said they needed to check again. “She looks great, I’d be shocked if this wasn’t just an abnormal test.” It of course wasn’t abnormal. But she wasn’t having seizures, she wasn’t in a coma, she wasn’t lethargic, she wasn’t sick, she looked great. How could she be dealing with this without showing any symptoms?

This is how life is with a sick kid who looks great is. As her parent I’m always wondering if she’s okay. The way she looks and the way her body is functioning are two different things.

Doctors (we saw many) determined that she must be losing salt slowly, over the course of months, and that’s why we didn’t see any signs of it yet. What they didn’t know, and still don’t know, was how this was happening. So a nephrologist led our team of doctors and nurses, including a urologist and endocrinologist. Before we were discharged we had a scene worthy of Grey’s Anatomy with doctors and nurses standing around Temen giving a summary of her and her visit.

Ultimately, heart and liver failure were both ruled out. While her kidney function looked okay, it was decided that she must be losing salt in her urine somehow… they think. There’s still no real answer. For now she’s on sodium supplements twice a day, in addition to her prophylactic antibiotics. She’ll need the supplements until she has corrective surgery. We still don’t know exactly when that will be.

I must say that seeing my baby be poked and prodded has not gotten easier. Her last hospital visit I had to leave the room while she had her IV placed on her head/scalp — this time around it was Ryan’s turn to step out. She had two veins blown while they tried to get blood, and another blown when they tried to do an IV. Having had one of my veins blown while I was in labor with her (or, I should say, while they were trying to put me in to labor) I know how painful that is. And with her chubby and perfectly pudgy arms, that happened THREE times. She cried so hard her arms are still blotchy with broken capillaries, and all we could do is stand there and tell her we were there and everything would be okay.

So, she’s okay. She looks great. But, she’s fighting something that we can’t see and that is both frustrating and scary as a parent.

Now we are back home. She is tired, and two days out of the hospital is just getting back to being her normal self. Her eyes are a little bigger, her giggle greater. We’ll take it day by day.

But if you find yourself bored and in need of something to do, send a prayer our way. A prayer for Temen’s health and for my sanity. Pray that we have confidence in His plan, because right now His plan looks like total bullshit – if I’m being honest.

xxoo,

Samm