Guest Post Friday! “A Few Things I Learned in the NICU”

Guest Post Friday! “A Few Things I Learned in the NICU”

I’ve always liked to write detailed lists. Whether it’s just a to-do list to make my day run more smoothly, or a more significant list, I like order in my life. That’s probably part of the reason why I got a degree in Elementary Education. Teachers are forever making lists and lesson plans, which are really just glorified lists. I always had this perfect plan to have four beautiful children, spaced two years apart. I grew up in a family of three kids; someone always had to ride alone at Disneyland. So, voila! Four kids it would be. Such a scientific and rational approach to the way I decided how many babies I wanted. And of course I would be done having babies by the time I turned 30. I was so excited when my husband and I started trying for a baby. Excitement gave way to nerves, which gave way to sadness, and eventually depression as the months turned into years. I watched as my closest friends and family had first one baby, then two, and three. I shared my struggle with some of them, but no one but my husband really knew the extent of my grief as I soaked my pillow with tears each night. My husband and I are fortunate to live near one of the leading infertility research centers in the world. We spent years and tens of thousands of dollars on invasive testing and procedures. We watched as our friends built their dream homes while we stayed in our tiny town home. We listened and inwardly cringed as they would sort-of jokingly say,...
Our World Was Turned Upside Down

Our World Was Turned Upside Down

My head started spinning as the doctors told me the results of the emergency MRI of my 3-year-old daughter McKenna, that afternoon. And that was when our world turned upside down. McKenna was a very happy little girl. She loved playing with her older brother Jarret and younger sister Kylie. She had always been a very little and petite child. She could eat and eat and never gain a pound! Every morning at 6 AM she would wake up with her Dad before he went into work and have a bowl of soup. The rest of her day consisted of many more snacks and meals. As she would go to the doctor for her regular check-ups I would ask about her small size and low weight. The doctor told me that because my husband (Morgan) and I were not very big people that she would probably not get very big and that we shouldn’t be worried. I tried my best to not worry but still watched her closely. It wasn’t until around 2 months before her 3rd birthday that things started getting bad. McKenna would experience flu-like systems of throwing up and being very tired. The sickness would last a couple of days and then go away. But before you knew it she would be sick again. It turned into a vicious cycle where she just couldn’t get better. Morgan and I thought maybe it was a bad flu bug that she just couldn’t get rid of. So we took her into the doctor and they weighed her in at 24 pounds. This was a very low weight for...
Diagnosis Highlight: FPIES, Food Intolerance — Guest Post

Diagnosis Highlight: FPIES, Food Intolerance — Guest Post

[title size=”2″]Meet Wyatt[/title] Wyatt was born on a beautiful June day, 3 years ago. He has been a fighter from his very first seconds. In the womb, he fought to stay alive and grow. In his first moments of life, he fought to live and to breathe. Wyatt was born without surfactant in his lungs to help them expand and spent some time in the NICU getting help breathing. After a scary week in the hospital, we brought our miracle baby home. From day one, he was a screamer. He screamed all.the.time. You may think that I am exaggerating here, but I can promise you I am not. We rocked him, we swung him, and he spent hours in front of the dryer in a vibrating swing because it was the only thing that helped calm him, even a little bit. I would wear him all day and rock and swing and bounce constantly to help him settle. If I did the dishes, I would put him in the bouncer and bounce with one leg as I did the dishes so that he would just cry, instead of scream, until he passed out. When I tell you that he never slept, I mean never. The doctor told me that he was colicky and to give him gas drops and rub his tummy. He would projectile vomit everything that went into his mouth. I was used to that, because his sister did that too, so I didn’t think anything of it. When he would fall asleep, he was propped on my shoulder in a certain way and he would moan...
Lion’s Story

Lion’s Story

Three years ago our son Landen was born with a severe heart condition.  We were shocked and devastated when doctors told us that he was not expected to live to his first birthday. Our little baby boy had a hard fight ahead of him. To symbolize the courage he would need we put a stuffed lion in his bed and we gave him the middle name Lion. To us, the lion stood for strength, courage and hope, all of which we knew our son had, and would need in his fight to survive. When Landen was two months old, the doctors found out that his heart condition was caused by a rare disorder called LEOPARD syndrome, a RASopathy. By this time, our little Lion was in end-stage heart failure. Doctors gave us a choice: we could either take him home and enjoy what little time was left, or try for a heart transplant. We knew our little Lion had more fight in him, so we listed him for a heart transplant. On Mother’s Day, at 3 months old Landen received his life-saving gift and also another unexpected gift. Our donor family sent a little stuffed lamb that matched our son’s Lion perfectly, it had been in their daughter’s bed while she fought in the hospital. We now say “Our strong lion has the heart of a little lamb.” Three amazing years later, we are still grateful for every day we have with our son, but with this gratitude comes unending oversight and heartfelt work. For example, our son takes multiple life-saving medications several times a day and his prescriptions...