Just two more weeks and Liliana will be 3 months old. Her reflux doesn’t seem to be improving at all and to make things worse, she’s been breaking out into random crying jags. Apart from that, she’s managed to smile twice unprovoked after spitting up so I guess she’s mostly happy.
Earlier this week I took Liliana to the hospital for a series of GI tests, which consisted of an ultrasound, a barium swallow and an X-ray. She was hungry through all of it, the poor thing, but she behaved well for the most part and only got fussy twice. From the comments I heard during the tests, there’s a possibility that some of her intestines are still herniated and her spleen is hiding somewhere. I’m really interested in what the X-rays show, but won’t be able to find out until we have our follow-up appointment with the GI doctor at the end of February (so far away!).
I was thinking that I need to post more pictures and I don’t think I posted any of when Liliana was born. These are when she still had her stomach, bowel, and spleen herniated into her chest.
Looking back at these photos makes me thankful for how lucky we’ve been that Liliana’s CDH was diagnosed early and we found a hospital that could take care of us. I’m grateful for Liliana, and though I knew being a parent wasn’t going to be easy, I wish someone would have impacted to us how very difficult caring for a CDH baby would be.
You know that feeling where you believe nothing bad can happen to you? I have that feeling ingrained into my being. I think I’m invincible and that I can overcome anything. That I won’t have anything to worry about because I can work things out.
So when I was told that my baby, because of her condition, could possibly have reflux, asthma, learning disabilities, I wasn’t all that concerned. Reflux? Pah! It was the arrogance of the naive.
And yet here we are. Sean and I have a beautiful baby, as stinky as she may be sometimes, and we love her. She drives us crazy and will continue to do so for the rest of our lives, but we absolutely love her to death and revel in all of the ways that she’s growing up.
But to those who have a CDH baby still in the womb: Think about it. Discuss the hardships that may face you. I gave up a full-time job that I loved to take care of Liliana because how can you trust anyone else to take care of your special needs baby unless you got a trained nurse? Would you be able to handle having a baby throw up all over herself and sometimes all over your clothes? Several times a day?
How would you like bolting from bed in the middle of the night when you hear your baby cough and gag just so you can sit her up with one hand and hold a bib under her chin with the other? Just so you can watch as her eyes get big, her stomach squelch, and the milk she was given 2 hours ago gets slowly pushed up her esophagus so it can flow messily down her chin into little pools on the bib.
And then there’s always the possibility of your baby not growing or ending up “a failure to thrive.” Or even the chance that you can’t take it anymore and you seriously harm your baby.
Ultimately, would you take the chance of having your baby and then after she is born, she becomes so unstable that all of the medical professionals in the world couldn’t save her?
Parenting will always be a struggle, but you have to anticipate your limits. When you get the diagnosis that your baby will be born with a condition, you have to understand all of the associated risks and the fact that you are not invulnerable to them.
Regardless, I am happy and every time Liliana smiles, it is worth every tear I’ve ever shed in my life.