What a whirlwind of a week.
I don’t know where to start, everything has been a blur. Over the last month Riley, who I thought was having belly problems and difficulty with her formula, slowly but surely began drinking less at each feeding. I guess mid last week I noticed she was also screaming and crying more and there was less I could do to comfort her. By Thursday she had been crying all day and actually stopped eating all together, only taking her pedialtye, her breathing also sounded horse ? Hoarse ? Probably both. I thought she had a milk allergy so I made an appointment with her pediatrician Friday morning and what started as a quick sick visit slowly became a nightmare.
During her check up I could tell both the nurse and doctor were examining her breathing much longer than usual, i thought to myself okay it is an allergy but instead of the doctor looking up at me and saying, “okay here’s the plan let’s try a non milk based formula,” he stood back, with this fucking look on his face and said,
“So..” and I instantly knew something was wrong.
“So I think I hear a heart murmur… ” everything after is just background noise- the words have wrapped themselves around me like anchors and pulled my consciousness deep beneath the sea. In ten seconds my thoughts drown me and then I resurfaceas he says, “I think you should just get her checked at CHOP just to be safe.”
Right, right, yes let’s be safe. After all I have no idea what a heart murmur could mean.. I think maybe her heart is skipping a little as she breathes. Maybe I have gotten far ahead of myself – I don’t ask questions, or I will spiral on my way to the ER.
We drive to CHOP- I literally have nothing with me other than a couple diapers and formula I stopped to get on the way, I thought we would be home in half an hour from the doctor, I am more than unprepared for the day. I actually even look a little homeless.
Riley and I are taken right away, I at this point am alone, though people have offered to come sit with me I have declined, unaware of what is about to unfold – that there will be wires , IVs, oxygen and blood draws, I don’t realize I’m going to watch my infant cry in fear and pain or that I will overhear a tech say Riley has a large VSD – (which I google quickly and find out means a hole in her heart). I don’t realize that we won’t be going home that day, but when I do – I know I can’t cry, that I have to hold it together because my 8 week old is laying on an ER bed with a lower lip that’s quivering and a look in her eyes that says she too has no clue what’s going on. And then she cries. My poor baby. I want to cry with you but for now I will just hold you.
The whole first day is a blur, actually much of Riley’s stay is. An influx of texts and calls come, I honestly don’t know who I responded to and who I didn’t – I do however appreciate all the love and support she and I have. Thank you to everyone who offered up their Netflix and Hulu passwords, the people who came without me having to ask, who brought snacks and redbulls and socks etc, thank you to those who asked to come but I was too overwhelmed and said no, and the people who offered to do whatever to help us, I thank you all from the bottom of my heart.
I’ve finally sort of digested what is going on and even though we came home today it is still a long road for my riley girl.
Riley basically has a large hole in her heart that goes all the way through, part of it is in a spot that doesn’t typically close on its own. For the time being she has avoided surgery but it is likely to happen in the future. Her condition causes her to burn a lot of calories so she wasn’t gaining weight, because essentially she was burning more calories than she was taking in. Very confusing but somehow the hole was affecting her eating habits, there was extra fluid in her which probably hurt her belly but the good news is that she doesn’t have to drink that alimentum crap cause its basically like expensive dirty cheese juice. And I can tell she is much happier and not in so much pain, as one of her meds helps get rid of some of the excess fluids.
So for now riley will be monitored closely at CHOPs outpatient and have lots of pediatrics visits.
It’s all very scary, it’s basically open heart surgery that she may still need. I know a lot of people have been saying how common it is and how they know someone with a hole in their heart and they live normal happy lives and that CHoP does this surgery all the time but common is a relative term, like of course CHoP does the surgery often it’s one of the best children’s hospitals in the United States, people literally fly their children here for treatments and surgeries, and like fucking herpes is common too and people live normal happy lives and canoe and hike mountains with that shit but it doesn’t mean I want my newborn to have it and it doesn’t make it less scary to have. So please don’t try and comfort me by saying it’s common – because that’s not helping.
But anyway, Riley is home today and doing much better than last week. She’s a tough little girl and I am so proud of how well she did during her stay. We had some pretty badass nurses that helped us too, thanks especially to Becky, Kathy, David, victor, and all the other nurses cause I’m terrible with names – you guys rock! Children’s hospital is definitely the place to be if you have to be sick.
Like I said big blur, just wanted to update everyone and say thanks for your love and prayers. They say it takes a village to raise a kid and my girl has a pretty solid village with so many wonderful people that love and care for her. We are the luckiest.