Guadalupe Mountains

We start day two of our trip by exploring Guadalupe Mountains. Neither myself, nor my hubby, has hiked here before so we are excited. We sleep in a bit after a late night watching the bats at Carlsbad Caverns. We grab a late breakfast at the hotel in Carlsbad, NM, and head for the mountains. So fun to have two national parks right here, and to cross back into Texas! McKittrick Canyon We stop first at McKittrick Canyon. It is already 11 am. It is a hot morning, Texas in May, but we decide we will do the 4.8 miles roundtrip to Pratt Lodge. 3 little kids (5, 4, 2) and a 4.8 mile hike, sounds reasonable, right?! :)   The hiking is fabulous. It is akin to hiking through a desert, yet we pleasantly find water and rocks, always fun…

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How to Recognize Infantile Spasms in Your Baby

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.

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Leah

I remember having a boring life. Every day was the same. Wake up. Stumble to find a cup of hot tea. Feed my people. Do a load of laundry. Feed the people again. Break up a battle. Feed the people again. Hold a baby. Step on a lego. Feed the people again. Change a diaper. Read a book with them. Feed the people again. And that was just before 10:30am most days. And now? The life of our Little Peanut, Leah, has brought us somewhere new and different. Somehow we are "that family". The one that needs all hands on deck. I don't even know when we turned into that, but here we are. I mean I thought we were mildly doing okay, but then one of my best friends typed out my story for a blog and I don't know.…

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Learning to let go in the PICU

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…

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Waiting on Open Heart Surgery

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,…

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Open letter to the Mama in the NICU

  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…

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Reflections on Pregnancy

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…

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Her Heart

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…

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20 Weeks

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…

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The Best Gender Reveal

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…

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