I can’t believe my miracle baby is a year old today. The past 52 weeks have been an overwhelming, challenging, growth-filled experience. I have struggled with my health, and I have had to accept several new diagnoses that I will have to deal with for the rest of my life. I have struggled with my emotions, and I have had to deal with a deep sense of loss, disappointment, and an all-out war of hormones that raged inside my body for months after my baby was delivered so much earlier than we ever could have expected. However, I found a particular brand of strength within myself that I didn’t realize I had in me. I have discovered a more meaningful relationship with God, with my spouse, and with myself. While I was disappointed in a lack of support where I expected it, I received love and care from those that I couldn’t have guessed would be there for me if you asked me a year ago.
I have had the darkest moments in my life since having my sweet Ruby. I still feel robbed of my entire third trimester and delivery. It sounds crazy to my friends and family who have had “normal” birth experiences for me to say that I wish I knew what it feels like to go in to labor. Being pregnant, growing a child in your body, and then giving birth is a complete experience, but I didn’t get to complete it. I woke up and had a baby when I was still expecting to be pregnant for two more months! And the guilt – the reason Ruby had to come early was because of me and my body’s inability to function for both of us. I looked at my baby in the NICU for the first time, hooked up to a feeding tube with a teeny, tiny diaper folded over her tummy, after days of not seeing her and felt like such a failure. How could my body do this to me?! To us?! I finally understand now that I can’t blame myself. This horrible, effed up disease has no rhyme or reason, and it could happen to anyone. It does not discriminate on age, weight, race, health, prenatal care, or genetics. Experts have been studying this disease since the 70’s and are nowhere closer to have an answer than they were then. I have found support in groups of women who have lost their babies because of HELLP syndrome. The founder of one of the groups I am in passed away recently from long-term damage to her heart from HELLP. I’ve been diagnosed with hypothyroidism and hypertension, two diseases that are a direct effect of the HELLP Syndrome. I will have to be on medication for the rest of my life. Imagine the aggression of an illness that kills its victims within 36 hours of diagnoses – if it’s even diagnosed properly – that is HELLP syndrome.
The Good News: what doesn’t kill you makes you stronger. But healing takes time. My body has made a full recovery, my long-term illnesses are completely controlled with medication, and even though they had to cut through one of my tattoos to take out my baby, they sewed me back up with such expert precision that my scar is not even visible. Ruby experienced a brain bleed at birth, which is pretty standard when you have a premature baby. It’s basically caused from a pre-term baby trying to adjust to life outside the womb before they are physically equipped to do so. Ruby’s doctors were so confident that it was healed that at her six month visit they didn’t even see the need for another scan.
Our dreams of having a sibling for Ruby had to go on the back burner after everything our little family has gone through. My medical team was not able to make a recommendation about more children until recently – and now that I’ve been cleared, they all agree that it shouldn’t be a problem for us to try again for another baby once we feel ready. Emotionally, I still want to do a little bit more healing before we head down that road again. We are making great progress as a family! Terra and I have both laughed and said “If we can make it through that experience, I think we can make it through anything!”