It is important to recognize Infantile Spasms. There is still a mindset that this is rare even from organizations trying to educate, even though a couple thousand new kids are diagnosed every year. Sadly is if it is missed, and the longer it is left untreated, regressions, and additional developmental delays can happen. I write this not to scare, but rather to encourage you to pay attention because it can be overlooked.
As I sit here watching machines keep my daughter alive. Tears flow. I cannot hold her. Can't really talk to her cause it sends her numbers into crazy land. No one talked about how being a parent would mean just sitting still and quiet in a dark hospital room holding your daughter's hand. Pleading, begging, praying. So much life training I did not receive and have to just learn as I go.- I missed the class in college where a cold can nearly kill your child. And then when you overcome her cold, 12 million other new problems that are even more serious present themselves.- No one covered how hard it would be to watch your kiddo #struggle and get worse every day.- I never read the book on how to be two places at once time. At home where my precious three…
It is still surreal on every level that I just typed that out. That having open heart surgery (OHS) is part of our story. And really since the beginning of our road with our Little Peanut, her heart has probably been the biggest thing I have prayed about, and the deciding factor in so many conversations. Way back at 12 weeks pregnant (nearly 11 months ago now), one of the reasons her doc thought she would not be viable was because of the condition of her heart. In utero. That blows my mind still to this day, thinking of how small it must have been back then. And all throughout pregnancy, we were always watching her heart, monitoring it, praying it would be able to keep up with all the changes her body was doing as it was growing until birth,…
To the high risk mamas and the NICU mamas. I see you. I see you going to your appts alone. Scared. Fearful. Wondering what new piece of sad or bad information is awaiting you from your medical team. I see the tears you wipe away when a friend is gushing about how the color she is painting her nursery or the new outfit she found for her baby and you are praying daily that your baby will make it earthside. I see you on bedrest in antepartum or at home or even just playing the waiting game like I did of should we take baby now, will baby make it, can we push baby another day or two. The game of fighting between sleeping baby and safe delivery/alive baby is harrowing and risky and frightful. I see your anxiety. I…
In college my senior thesis compared Latin American politics to soccer. The parallels were obvious to me. I've often been asked to sum up what this pregnancy is comparable to and often times I struggled to find the parallel. There is no comparison. It is its own thing. To find language to describe it didn't exist in my head until today. In complete stream of consciousness, here are the reflections on my pregnancy. Reflections of a roller coaster ride. The ride is coming to an end. I can see the station where we disembark. You know that moment when the ride is ending and the brakes are hit just before you enter back into the station. It's nearly whip lash. You are well aware the ride is nearly over. Oh sure. A new track awaits and is just around the corner…
Turns out I'm a terrible pregnancy blogger. I know everyone wants info and details and I love you for it and I'm grateful you are along on this journey with us. Yet, I find it so hard to capture the ups and downs. Case in point. This post about her heat. I've been meaning to write it for weeks now, but the weight of it all just sits and consumes me and so I function in denial. If it's not out there, I can put my head in the sand. Yet, that doesn't change the reality, so here I am, with an update weeks later. :P Monday Nov. 6 was an appt with both my OB and then later with my MFM. My OB appointment was fairly routine and normal, for your average 23 week appt. We listened to baby's heart…
Oct 14 marked 20 Weeks and the week of All The Appointments. It is thrilling to be halfway, and to realize my God is bigger than any doctor or diagnosis. Remember the first MFM, Dr. Doom and Gloom? He said we'd never make it to 20 weeks and here we are - our daughter is still alive! The appointment with the Cardiologist and the fetal echo revealed that our daughter does have a congenital heart defect - a VSD - a hole in her heart. There are lots of possible outcomes for this; from hole can close on its own to if it doesn't close Peanut could need anything from a cardiac catheter to open heart surgery after birth to help it close.... Just depending on severity. So lots of unknowns, and lots of appointments to come to monitor and keep…
Once upon a time there was this family, and they were bestowed the most upside-down pregnancy one could have. Not willing to be upstaged in any way, the Gender Reveal had to continue the ride they have been on. The first of October will not be a day we will soon forget. The weekend began normal; hunt down big black balloons that would hold confetti for our kiddos to pop and reveal gender. Apparently, that's super hard to come by! It took visiting 3 different stores to score these balloons. And with our photographer and videographer, and intimate family friends we were ready to go. For your viewing pleasure I present..... Meanwhile, one of my best friends was making this face during the whole reveal. And I knew something was up. This was her face: Me: uh.....Is this what gender you…
So life just keeps on going, going, going; and sadly I am do for an overdue update. Last Thursday (Sept 21 – 2 days shy of 17 weeks), at the prompting of my friend, I met with her highly recommended MFM. He shall be called Dr. Wonderful. This man has the best bedside manner EVER. He is gentle, compassionate, pro-life, loves Jesus, and is not going to be bound by time in any way. My appointment with him was LONG and amazing and such a comfort. I got to watch my baby move and thrive along with one of my dearest friends. We sat there and watched my Little Peanut wiggle and turn around and have a great heartbeat. At 16 weeks Nuchal Translucency is no longer visible so they now measure the Nuchal Fold. Little Peanut had an abnormal thick…
Two roads diverged in a wood, and I - I took the one less traveled by, And that has made all the difference. From The Road Less Traveled by Robert Frost This isn't a road I would wish on any family. Most days I wish we weren't walking it ourselves. I want to complain and argue and scream, "This isn't Fair.". And you know what?! It's truly not fair. It's just not. And like I tell my Man-Cub....a Fair is a park with rides and attractions and games. That's not life. Life is messy and murky and sad and hard and shows us just how much we all need Jesus. If life was fair and every mama that wanted a beautiful, healthy baby got one miraculously without thought, what would that teach anyone about the beauty and sanctity of life? How…
