One week ago today we Jack gave us another big scare. He again took another drink from his tubes and was unable to breath for minutes on end. This lead to another 911 call and a trip to the emergency room. This time was it for us we had to figure out a way to prevent this from happening again. Keep reading to get the full story and what we are doing to prevent this from happening again.
Read MoreFirst and foremost I am so sorry you are here. I am sorry that all of the plans you had for how your baby would enter this world have been demolished and I am sorry for the anguish and anxiety you must be feeling. Being in the NICU is not easy for anyone involved and that includes you. I cannot promise you that this process will be easy or painless but what I can say is that if you keep a positive outlook and attitude it will make it seem less awful.
Read MoreAs humans we all need a break from the world. Time to check out, be on our own and take care of number one. This is especially true when you become a parent. You tend to feel like the weight of the world is on your shoulders and you are always going, going going, and it is easy to forget to take care of yourself. To ensure that we are both well equipped to raise our tiny people in the best way possible Josh and I both take what we call a Solo Night once a week.
Read MoreWith severe weather season upon us and our BIG tornado scare last night I was scouring the internet for tips and tricks on how to better prepare. I have spent my whole life in the Midwest and have witnessed firsthand the complete devastation a tornado brings however, with this being our first season with both babies at home I wanted to be UBER prepared.
Read MoreIn this weeks post I invite you to join us for a day in the life of Rory! We filmed this on a beautiful Sunday so you will get to see lunch dinner and afternoon playtime on the porch
Read MoreOn this day 9 years ago, when mawrige bwought the two of us togefer we never could have imagined what life had instore for us. Our wedding may not have been everything that we wanted it to be however, the love that we shared and the promises that we made that day made all of my little girl, Disney facilitated dreams come true.
Read MoreBeing a mom is the best, most rewarding job I have ever had. Seeing their sweet faces is the reason I get up every morning. However, it is also the hardest, most challenging job I have ever had. As moms we tend to carry all of our family’s baggage on our shoulders and that thing called a personal bubble no longer exists.
Read MoreIt’s hard to believe that this photo was taken just 1 short year ago. This was the first time I ever held both my boys at the same time since their birth. The moment my second born was laid on my chest joining his older brother was the first moment it really hit me… I’m a mom, a twin mom.
Read MoreIn this weeks post I invite you to join us for a day in the life of Jack! We filmed this on Sunday so this is a typical weekend day at home.
Read MoreWe took our first family road trip to my hometown of Junction City, Kansas last weekend. This was a huge deal for us all because it was Jack’s first time leaving the state of Missouri and both boys’ first time leaving the KC Metro. We loaded the car up with all of the essentials early Saturday morning and hit the road.
Read MoreSpring has finally sprung which means the bubble we have been living in has been popped! Since Jack came home in late November we have been hibernating and isolating our medically fragile preemies from the world of germs outside.
Read MoreThis weekend a spring cold struck our house and all three boys were suffering from the sniffles and sneezes. But this was no ordinary cold, it was a full blown Man Cold.
Read MoreWhen you bring home your trach baby you also bring with you a nursing staff and a full hospital supply closet. Luckily for us our house has a giant sunken living room complete with a wet bar. We decided that this space would be perfect for Jack so we arranged it to fit his needs, our needs and the needs of his nursing team. This is the full video tour.
Read MoreWe all have them, bad days, overwhelmed days, I just don’t want to days and days where you literally want to rip every hair out of your head and run around screaming. This week has seemingly contained only those kind of days and it’s only Wednesday!
Read MoreEvery hospital does things differently, we learned that for certain in our NICU time however, there are a few things that you must do to prepare to take your trach baby home. Here is my top 10 list of things to put on your to-do list to prepare yourself to care for your sweet lad or lass.
Read MoreMarch 12th 2018 was the best worst day of my life. The events of that day were life changing shrouded in fear, anxiety and pain but ultimately was the day I started believing in miracles, it was the day I became a mom to the most resilient and strong human beings I have ever known. The 2019 version was oh so different, our babies are ONE y’all, ONE. They have grown so much in the last 12 months, they are no longer tiny, wrinkly, alien looking things, they are big, chunky bouncing baby boys.
Read MoreWhen we had the boys 15 weeks early we knew that we would spend a significant amount of time in the hospital. But we were now a month and a half past our due date and while Jack was finally leaving the hospital he was leaving it via ambulance in what looked like one of those contraptions they use to keep delivery pizzas warm.
The first few days in Jack’s new digs weren’t a walk in the park. We were not only in a new place but in a place completely different than our OG hospital. We knew no one, we were in a much larger unit and things were not only set up differently but done differently. We were optimistic about having a new, fresh pair of eyes with more advanced capabilities but it was a rough transition for us. However, if you looked at our sweet Jack you would never know.
Jack’s first cuddles with Daddy in Hospital 2.0
Within the first week of Jack’s arrival it was decided that the level of support he needed could not be accommodated with the nasal cannula any longer and he needed to be intubated. We also decided to start him on a fifth round of steroids. Seeing your baby intubated when they are itty bitty is rough but seeing it when they are bigger and stronger and have an opinion of their own is much harder.
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Jack hated it. He wanted his binky, he wanted his cuddles and most of all he wanted that big tube out of his throat. It lasted all of 10 days before he went beast mode and yanked it out. He was stable enough that he was able to go back to the nasal cannula and we got straight to cuddling.
Happy baby Hulk!
Sixteen short days later Jack started going downhill at a rapid rate. We found that he had rhinovirus, also known as the common cold. While a cold seems harmless enough, in the NICU it’s a full blown situation. Jack was put in isolation - meaning that everyone entering his little space had to be decked out in PPE Body Armor, he would not be able to see his brother at all, and he had to be intubated once again. This time we could not afford for him to hulk out so he had to be sedated and often strapped down. This lasted for four painfully long weeks. Our sweet happy Jack was a tiny shell of his normal self a vast majority of the time we were with him but there were a few moments of light in the dark.
The neo-bars they normally use to hold the tube in no longer fit Jack’s cherubic cheeks so he had to have all his tubes taped to his face.
One of the only good things to come from this crummy cold was that as long as Jack was intubated we could get a 4D CT scan of his under grown lungs and airway which could give us a definitive diagnosis and our plan of care. We found that Jack has what is informally know as a floppy airway (Tracheomalacia) For which the treatment was a tracheostomy, and with a tracheostomy comes a gastrostomy tube for eating. We knew when we came to Hospital 2.0 that this could be the road we would have to go down and we were terrified of it. However, we were relieved to have a definitive answer and a way to finally get our baby home. Jack had to wait four full weeks before he could undergo surgery to ensure that he had kicked his cold to the curb before going under anesthesia. Surgery day came and while it may seem strange it was a calm and relatively peaceful day. Surgery seemed like nothing compared to what he had gone through during the last four weeks. Surgery meant he could get back to his old self and surgery meant a real and tangible road map home.
Jack Pre and Post Surgery
Jack’s surgery went perfectly and he came out with a fancy new trach, a g-tube and for the first time since he was born (193 days) he had nothing on his face, no tubes, no tape just big juicy cheeks. Within no time Jack was back to his happy self and was especially happy to be reunited with his long lost twinsie.
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If you have read all of my blogs up to this point (if not, get to it!) you would think that our NICU time was O-V-E-R but when Rory came home in July of 2018 we were just getting started. Rory had a fairly normal NICU stay. He was the smaller of the two and had a much rougher start but once we were out of the weeds he progressively got better and better each week and he rarely had a bad day, he passed all of his tests (except for the car seat test) with flying colors and he was ready to go home just 8 short days after his due date. Once he was home he only required a small amount of oxygen while in the car, thickened feedings and a daily multi-vitamin, we were lucky. And then you remember we have twins…
Read MoreThe long awaited day is upon you and you are preparing to FINALLY take your baby home from the hospital and you realize you have no idea what to do next? Here are my top 10 tips for how to exit the NICU!
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