You would think that after FIVE years telling Lola’s story would get easier and easier…but it doesn’t. It is a pain I wouldn’t want anyone to ever experience. Yet so many parent’s experience things like this and worse because of birth defects and cancer daily. I know in the grand scheme of things this isn’t bad, it could have been worse. But at this moment of time 5 years ago, this was our worst nightmare.
I’ll take you back to the beginning of it all.
Five years ago, my husband and I, Blake, went it for the 20-week anatomy ultra-sounds. You know the one where you are like I am FINALLY halfway through my pregnancy. Yep, those were my thoughts exactly. I was so sick from the beginning of this pregnancy I was so happy to be at the halfway point. I didn’t think anything of it. We went in on a Saturday just for an ultrasound, because I was teaching at the time, I couldn’t miss any more work. Anyways, fast forward until Wednesday the following week in January of 2014. I am in the middle of teaching Kindergarten and I get a call from my OBs office. I don’t think anything of it. She calls again and again. My heart starts to sink. I know something is wrong. I send my students to workstations for a bit, then call the doctors office right back. I get the first part of news no mom wants to hear about their baby (A bit more personal, Lola is our rainbow baby, we lost a child early in our first pregnancy. I was also told I could never get pregnant naturally because of a couple of medical issues, so to get pregnant ourselves was a miracle and now something is wrong. My heart is absolutely broken).
The phone call went something like this. “Hey Nikkie, It’s Dr____, I wanted to let you know that I reviewed your ultrasound from this past weekend, and there is a spot on the baby’s lung that I am concerned about, and I am referring you to a High-Risk Dr. to consult further, I am unfamiliar with these kinds of things”…I lose it y’all!! I am a crying mess at this point. Like u-g-l-y crying.
Thankfully, there was a teacher that was free to come watch my students for a bit, so I could go to the restroom and cry my heart out and then come back to class. Thank you, Julie!
Then I have to make a phone call to my husband, I never want to make again. I call Blake, and I’m hysterical. He can’t understand me and has no idea what I am saying. He calls the Doctor himself to get the scoop. Friday of that week, we go to a High Risk, where he confirms that Lola has a cyst on her left lung. At this point, the cyst is the size of a quarter.
From that point on we go weekly to a high-risk Doctor, every 3 weeks to a Cardiologist (She was the BEST!) and MRI’s every other month and met with a fetal surgeon to informed on measurements of Lola and the size of the cyst and surgery procedures and things like that.
It was a very touch and go pregnancy. At 23 weeks, we went in and the cyst had grown and begun causing heart issues in our sweet baby girl. The cyst was so big, and her body so tiny that it pushed her heart to the right side of her body. They told us that week, if the cyst continues to grow we will do INUTERO SURGERY. Which means cut me open, cut open the sac, cut her open, remove the cyst, sew her back up, sew the sac up, me up and then put me on bed rest until she is born (She was due at the end of May).
I freaked. I couldn’t let that happen. I went home and we had prayers coming in from literally all over the US, and World, it was so cool. Our bible study group was our crutch, without them and their support there is no way we could have been strong enough to get through this. We are forever grateful for them. Sure, enough we went back the next week. And the cyst hadn’t grown and didn’t grow the rest of the pregnancy.
We monitored her heart defects for the rest of the pregnancy.
For space and time sake, I’ll shrink the story a bit.
End of the pregnancy came, I was put on bed rest for 3 weeks before I was induced with Lola due to preeclampsia and cord issues and lack of fluid.
Next, We also had a decision to make. Do we do surgery or not?
Surgery Day: My husband and I decide surgery on Lola’s cyst is the best option. There were chances that it would become cancerous, or it would keep her from being healthy and cause more lung issues as she grows.
September 2014. Lola is barely 4 months old. We check into surgery, get her vitals and give love to her and they take her back to surgery.
30 minutes in, we get a call from the nurses that the Fetal Surgeon is sorry but surgery will be much longer than anticipated because the mass is “significantly bigger” than what the MRI’s had previously shown and bigger than we hoped for.
We do have family there to support us at the hospital, love you Mom! If you have been through something like this you know it is heart-wrenching. I am a puddle of tears on the floor. My amazing husband is like it is ok, She is SO strong and fierce, she’s got this! She is a fighter!
We wait and we wait and we wait! For almost 7 hours!! YES, 7 hours to see our baby and make sure she is ok! I know she is safe but I just wanted to lay my eyes on her myself.
We finally see her and it is sort of like a dream because I know that is my daughter laying there but she’s not herself.
She is just moaning because she is in so much pain. She definitely gave us and the doctors a run for our money. The cyst was the size of a grown man’s fist. 4 times the size it showed up in the MRI’s. Because it was sort of hiding behind the lung at a funny angle, we were only to see a top view of it. When the surgical team got in there, they found 8 blood vessels. 4 pumping blood flow to the cyst and 4 taking blood away. It is an absolute miracle that the cyst did not grow bigger. ABSOLUTE. MIRACLE. I know this!
Our Doctor told us this too. This was one of the most complicated CCAM’s (official diagnoses) that he had ever seen before. He also told us that when he saw the size of the cyst, that he had to stop. And PRAY! I have NEVER had a doctor tell me that. It was one of the most amazing things to hear.
Due to the size, they put Lola on a morphine pump and had a drain in the side of her chest.
We were taking from recovery to her hospital room, where we were told to make ourselves comfortable for the rest of the week. The first night, she didn’t sleep. She moaned all night. Every four hours someone was checking on her, and pumping her full of pain medicine. I never want to see any child in that much pain again.
The next day, we tried to nurse. She was not interested. She became more awake throughout the day, she had X-rays to show any fluid or air left behind from the surgery. We finally were able to get the morphine pump out, along with the drain out of her left side.(The hardest moment to watch to date, is the nurses holding her down to remove the tape and machines). What a difference that made! Oh my Gosh! She was eating and laughing and awake.
We stayed in the hospital for the week and then were released. I have never been SO happy to bust out of a hospital. But at that point, the real recovery begins. We didn’t have the nurses help to change bandages anymore. We saw the real scars which are absolutely heartbreaking to see in your 4month old at the time. But today, Lolas scars are there as a reminder of what a miracle she truly is!
This story replays in my head on the anniversary of her surgery every year. But it is emotional. At the same time, we were in the hospital with Lola’s surgery, a close friend was losing her baby in the hospital next to us. I was helpless, and I couldn’t help her.
Today, Lola is a feisty, independent, sassy- very sassy 5-year-old who has some gnarly scars from her lung surgery at 4 months old. My whole point of this story is to be reminded of our storyline and the things that happen to us don’t define us. What defines us is how we recover and move forward from the events.
If you or someone you know is going through a hard time, be the person to reach out to them and make sure they are ok. Don’t offer to help, Tell them you are on a certain date. Maybe they just need an ear to listen.