“Otherwise, I’ll fall apart. I’m going to fall apart. I am falling apart.”
― Tabitha Suzuma, Forbidden
And just like that our world completely changed.
One day the pieces will come back together. For now, meet Lo. You will learn in a different post why she is “Lo” but in short, Lo is our little Wonder and Warrior born to the name of Lucy MaryAna. She is the final piece to our puzzle. I just must take all the pieces out handpicking them one by one and connecting them all back together again no matter the difficulty to explain everything completely to you all. For now, here is the heart to our whole mission.
As I am sitting here, unable to sleep, holding my beautiful, perfectly imperfect baby girl inside the NICU pod, I have tried to have the restraint to stop obsessively researching.
I shared a post to my Facebook with friends and family as we went radio silent trying to navigate through what we were experiencing. My Mom and Grandma rushed from IL to be by our side. Raising the rest of my kids when I couldn’t leave even though I was dealing with my own medical issues and being urged to talk a walk in the halls just to get a breath of fresh air outside of that pod. One of my best friends flying in from Kentucky (thank you, Alison!), spending a few days with my kids to try to normalize things when I was and still am, so certain things will never be normal again. Jaxson, her oldest brother who has a birthday 15 days (and 9 years apart) has to learn that mom is most likely going to spend his whole birthday month in the hospital with his new baby sister.
“I have been trying to find the right words all the while not really wanting or knowing how to talk to anyone not because we don’t love or appreciate you but simply because we are at a loss. Our beautiful baby girl (final child) Lo was born 5/1/19. What we thought was that she was completely healthy. She looks healthy. Acts healthy. From the outside looking in, you would never know she has a silent disorder.
We’ve kept Lo’s diagnosis close and quiet as we’ve tried to process, pray and hope it was a misdiagnosis, but there is no denying one thing for sure. Lo has Left Hemimegalencephaly, aka L-HME.
Hemimegalencephaly is such an incredibly rare disorder. One that has little information, little research, or statistics available to the public. It is a Genetic Disorder that leaves us with many unknowns and an equal number of questions. It started at 5 weeks gestation, and I had zero clue that while in utero she was likely seizing every single day multiple times a day. Lo’s left side of her brain is abnormally larger than her right side. From what the medical team is telling me, this is a disorder that, when found earlier is the opposite of most things – earlier does not mean better. It doesn’t mean we caught it and it can be treated faster and cured. It means she has more of a chance to have a worse prognosis than a child who develops this later in life. This disease is one that is on a spectrum, and we are facing her being severely disabled for the rest of her life. Mentally. Physically. Cognitively.
At 13 days old we were admitted to the PICU by her pediatrician as Lo’s appetite was down, and she wasn’t having bowel movements. While in the hospital the very next day we were awaiting to be discharged. Lo was nursing, the nurse was talking to me while doing her vitals, and I look down to see my baby girl’s eyes shifting, body stiffening, and her shaking. I immediately asked if the nurse noticed it. She said no. Nothing seemed out of the norm. Although I could see the way her face shifted and how stiff she became while she watched Lucy’s change in my arms. I continued nursing, and she fell asleep within seconds of that happening. Her dad held her after we were done and within 30 minutes expressed concern as he watched our daughter do the same thing again in her sleep. He wasn’t in the room the first time it happened, and I hadn’t mentioned it to him yet so when he told me what he witnessed with her, I knew immediately something was wrong and that I wasn’t imagining things.
She did it 2 more times while there in another 45 minutes. All while she was sleeping. Each incident ending with her waking up for only a moment to fuss in protest to fall back asleep. This time we were able to get the nurse to witness it (again) and call the doctor. It was explained to us that this probably was nothing, most likely not a seizure but a deeper cycle or REM sleep that was causing Lo to have the normal baby spontaneous movements.
So, we went home. Hesitantly. Uncomfortably. Uncertain. We took her home.
My grandma was still staying with us currently. She had come out to Colorado to be with me for my birth, so my kids had an adult present given my history and complications of labor and delivery. My grandma is the main one Lo is named after. It is our Abuelita Lucy.
Three days later, I was worrying nonstop. If it was normal movements during REM cycle, why was she now doing it while she was wide awake and alert? Why was it happening occasionally to now a few times in the hour every hour? None of it made sense as I reached out to a few families and friends. Sending them videos. Asking for validation on whether it was normal. The gnawing feeling in my gut told me it was so much more. Please, for the love of God remember your Mom Gut is ALWAYS right. You know your baby better than anyone. It wasn’t until that evening when her normal 10-15 second “REM movements” progressed to 1 min long of a more aggressive attack than the previous ones Over and repeatedly… So, at 10 pm we packed a bag, loaded Lo and her 18-month-old brother Liam in the car, and headed back to the hospital this time straight to the ER. Like clockwork, she seized during our check-in. The nurse and doctor providing vitals were able to observe it and the dreaded answer to my questions came. “Your daughter is having seizures.” Within 45 minutes they had us admitted to the NICU.
Right now, I will write here and share. It makes it so much easier to do it this way rather than tell our story over and over and repeatedly relive the fear, anxiety, and sadness over and over.
Sunday was 1 month since hearing Lo’s diagnosis. 1 month since everything turned upside down. So often, we are asked, “how are you doing? Are you taking care of yourself? Are you getting sleep? Can I do anything for you?”
I hear and see these questions being asked and I sit in a daze completely unaware of what to say…or think… or do. I’m not one to ask for help. A friend started a meal train for our family, and it had been incredible not having to worry about feeding the family, yet I felt so guilty accepting other people cooking for us. Like we are inconveniencing people. Now trust me, I get it; people do it out of love and care. I do the same for people I care about BUT – it’s new territory for me.
How am I doing? I don’t have a single clue. I’m existing. I’m keeping it together for the sake of my kids. I keep reminding myself I have 3 other kids that rely on me just the same as Lo. Every day since we’ve been given Lo’s diagnosis has left me in a fog. I had been battling Eclampsia since I had her and still not cleared as my blood pressure won’t drop when all my life, I’ve had incredibly low BP. When asked about whether I followed through on the bed rest and if my blood pressure has dropped, I can’t help but laugh because the idea of not stressing seems foreign and impossible right now. I barely can breathe, let alone relax.
Everything about my pregnancy was a rollercoaster. I can’t complain about it because it was far easier on me than Liam’s was and up until 15 minutes before pushing, I was laughing and cracking jokes with my kid’s father. It all kind of went downhill afterwards. I tested positive for preterm labor at 23 weeks. I was put on BP medication to help reduce the contractions. It worked. Weekly checks and weekly ultrasounds showed everything was perfectly fine. So, we thought. Did my preterm labor cause this? Did I eat the wrong things? Did I do something wrong? How or what did I do to not better protect my baby?
Post Labor and delivery with Lo were as scary as it was with Jaxson. My May babies. They are quite the duo. Both kids I hemorrhaged incredibly bad with. Difference with Lo was that I thought she was dead. I felt lightheaded, and I must’ve started losing blood quickly because I don’t recall hearing her cry or even holding her, although I apparently did. I think I even face timed my mom for a few seconds, but I was so out of it.
We have photos to show I did. Lo had swallowed meconium, and I remember my (incredible) OB telling me to stop pushing, she was out, but the cord was around her neck. From there, everything was so quick. I remember the flurry of nurses, one holding my hand and promising me I could get through the rest of labor (good ole placenta). I remember everyone telling me she was out, but I didn’t hear a cry. I couldn’t hear her crying, and I remember panicking, looking at my ex-husband, not saying a word pleading with him silently to let me know she was okay. I remember telling the nurse I didn’t feel good. I think the haziness of things started before I hemorrhaged. I think I was so shaken up thinking she wasn’t alive it all became such a blur. It’s like a movie reel as the memory of events play in my head. Hearing people yell my name and strangers standing over me as I dozed in and out. I remember them telling her dad and our wonderful photographer Mandy that they had to leave the room. Thankfully the nurse heard me say I didn’t want her dad to leave. On May 1 I thought Lo was dead. I thought I was dead. The nurses and my doctor saved my life, and in reality, while it took Lo just an extra few seconds to cry, she was breathing and completely fine.
I don’t know that I have yet to recover from that. I look at my other 3 kids and become sick to my stomach as the realization came in that I almost left them. I sent a text to my grandma, my mom, and one of my best friends, Tanya, on the night I went to get induced, expressing my “wishes” in case anything was to go wrong. Again, LISTEN TO YOUR GUT. I wanted to make sure they all knew so the kids would be taken care of and okay. I knew that night something was off. I felt it. I just didn’t know what was all to come.
I developed postpartum depression rather quickly. Having eclampsia, being restricted. Not processing what happened during labor and struggling to produce milk to nurse my baby I just felt off. Inept. I reached out to the NP in my OBs office and sat in her office and cried. Everything had become so overwhelming, and I had never experienced that feeling after having my other kids. She has been such an incredible support to me through this all and I am so thankful for the people at my doctor’s office. I am thankful I showed up to my appointment that day because it was that night that Lo was admitted to the NICU. I think having their support and guidance is what has helped me through all of this.
It doesn’t mean I haven’t broken down. It doesn’t mean that there aren’t daily tears. Of fear. Sadness. Frustrations and confusion. Yet… Lo is indeed alive. My baby girl is alive. I have had friends lose their children and my heart is broken for them. So, I am so thankful she is alive.
I am heartbroken she is permanently disabled. Not because she will have delays or disabilities. Not because there is “something wrong” but because I blame myself even though I’ve repeatedly been told not to. It’s because I don’t want her to suffer. I don’t want her to hurt, or be teased, or go through any of the struggles that will come with her disorder. I am terrified of what her siblings will have to go through alongside her. I felt like I couldn’t breathe as she was continuously poked left and right as they couldn’t get her veins to cooperate. Watching her get a spinal tap. Seeing her hooked to all the monitors, oxygen, eeg machine. Not being able to go with her for her scans. My job is to protect her, and I have felt like I am failing her. I fear for her life literally in the most painful and agonizing way. Whether or not she will live a full life or if we will be lucky to have her past her childhood. I have so many fears and it takes everything in me every day to not let them consume me. For the first time in my life, I regret living so far away from family. All our family are in different states, and I wonder often how we will get through this all.
I don’t know how to answer whether I’m okay. In a sense I am. I must be. She’s here. She’s doing better than has been expected. I have 3 other amazing and healthy children I am so blessed to have. Yet I maintain that daily feeling of heartbreak. And anger. And confusion. And sadness.
It’s only been 1 month of this, and it hasn’t even truly begun. I wish we had more answers. Statistics. The results back from her genetic panel.
I wish Lo never had to go through any of this.
That’s how I am doing. I can’t speak for anyone but myself, but I’m in survival mode. I am thankful every day that I have the support system of all people I do, and they are there going through this with me. All the while I need to be her foundation.
I am sorry for the absence my friends, but I do promise once I figure out life, I will be back with you all.”