What Happens After The NICU

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When our little one was first born I remember thinking that the worst part was over. We no longer had to play the guessing game because he was finally here and we could see him for ourselves. Three weeks in the NICU and we knew all the ins and outs of his hydrocephalus and thought we knew what that would mean for the months and years to come. But I didn’t fully realize what happens after the NICU until we were released and Chris and I were left to do this whole parenting thing on our own.

We feel very lucky that we had so much time with our NICU nurses and doctors. They really walked us through taking care of our little one, so we were fairly prepared for when we finally went home. Or so, I thought we were. Those first few days were incredibly blissful. Finally having our baby at home with us made us feel like real parents. Our hearts were full and happy, and we were incredibly thankful.

But then Chris went back to work that following Monday and I started to deal with all the doctors appointments. Our pediatrician wanted to see us every few weeks for the first two months, then there was a follow-up with a cardiologist and our neurosurgeon, and after that we met with a team of therapists for an evaluation to see what services we would need for our little one. It was a lot. And it was really stressful. Especially because Chris couldn’t do all of these things with me so he had to pick and choose what he could go to and what I had to do alone.

Every time we went to a different doctor my heart would race and I would become nervous and anxious all over again. I was so afraid of bad news, because I honestly felt like we had our share while I was pregnant and I wasn’t sure if I could handle any more. But each time I was pleasantly surprised. Every doctor would tell us that our little boy looked great and that they’d see us again in six months.

Well, six months have now gone by since most of those initial appointments and we’re about to make the rounds again. Last week we met with our neurologist, and while Chris met him in the NICU I never did. And I feel very lucky I missed out on that meeting because he was not very optimistic. He told Chris that our baby’s outcome wasn’t good after looking at his ct scan and then basically said, see you in six months. Last week though he was surprised. Our little guy has hit milestones, is developing just like he should, and he is a happy and healthy little boy. To say the doctor was shocked might be a bit of an understatement. It’s always a great feeling when you surprise your doctors like that.

Today our little guy goes in for his seven month ct scan. This will tell us if his brain is moving back into place after being pushed to the sides to make room for all of the fluid. It will also tell us whether his shunt is functioning properly and draining at the rate we want it to. I honestly feel like this is the scan we’ve been waiting for. After this we’ll find out the final missing piece of our crazy complicated puzzle. Chris and I know that the Lord is good and He has blessed us so much already, so we aren’t expecting any surprises tomorrow. That doesn’t mean there won’t be, but as of right now we have no reason to believe the shunt is malfunctioning or that anything else is wrong. But, only time will tell.

To be honest, I’m anxious. When we first got our hydrocephalus diagnosis I just kept thinking, “once he’s born we’ll know more”. And then after he was born I kept thinking, “after he gets the shunt we’ll start seeing changes”. Then, as he’s gotten older I keep thinking, “with each passing month we get closer to his ct scan. Then we’ll really know how everything looks”. Well, it’s finally here and as Chris puts it, this is our last big thing. Once we get this scan the waiting and unanswered questions are over. Then we’ll just have follow-ups and therapy to deal with. We can finally start moving forward from all of this, and that’s a big deal.

If you had asked me six months ago what happens after the NICU, I don’t think I could have told you. I couldn’t think that far ahead. It’s crazy to me to look back now and see how much we’ve been through in these short seven months. And it’s all lead up to this moment.

This journey has been a challenging one, full of ups and downs, lots of tears and so much joy. It’s one that I never would have chosen for myself but I am immensely grateful for it. What happens after the NICU is that you adjust to your new normal. It’s not the normal that you were expecting, but it is yours and you own it.

Did you have a baby in the NICU?  What was your biggest adjustment once you brought your little one home?