I’m just going to say it: THIS SUCKS! It sucks that Garrin was born 17 weeks early. It sucks that he had to spend 147 days in the hospital before going home. It sucks that his time at home was cut short when he was admitted to a new hospital. It sucks that he is […]
Tag: micropreemie
The “If” is Now the “When”
The “if Garrin gets a tracheostomy” has transitioned to “when” he gets it. I’ve gotten second, third, and fourth opinions, and the consensus is that yes, Garrin will undergo a tracheostomy, a procedure where a surgeon creates an airway to be used for long-term mechanical ventilation, as well as a gastrostomy, a procedure where a […]
A Miracle
The doctor that is on this week is very familiar with Garrin, as he was one of three doctors treating Garrin from early on. It was very reassuring to hear that he shares the other doctors’ recommendations. He reaffirmed the likelihood that Garrin will need a tracheostomy, a surgical procedure in which an airway is […]
Checking the Boxes
To stay off the tube, Garrin must □ gain weight, □ maintain appropriate oxygen saturation while weaning oxygen, and □ diffuse and exhale an appropriate amount of carbon dioxide. Since being put on CPAP, he has been able to check each of these three boxes, avoiding intubation. Unfortunately, he was not able to check any […]
In the Light of Day
Everything looks better in the light of day, even more so after a few hours of sleep, and this situation is no different. On Tuesday, we received a phone call indicating that Garrin’s overnight oxygen saturation trend analysis from last week revealed significant desaturations. These results in combination with Garrin’s increased oxygen needs at home […]
Finding Our Way
It’s hard to believe that Garrin has already been home for more than two weeks. What an amazing and challenging whirlwind it has been! Throughout the last two weeks, I have been reminded of the ways that pharmaceutical companies, insurance companies, and even home health companies put profit over patients’ well being. I’ve spent hours […]
Graduation
Getting to this day would not have been possible without the nurses and NNPs. They are some of the most intelligent and compassionate human beings I know. They provided Garrin with the highest level of health care possible. They spent countless hours getting to know him and his quirks, and they went to bat for […]
Busting Out
Guess what?! The change to Enfamil AR worked! Garrin’s NG tube was pulled on Friday, and barring any complications or shenanigans from Garrin, we are busting out of this joint by the end of next week‼️ We have already started working on the “Journey to Home” checklist. Safe sleep and shaken baby videos ✔️ Hearing […]
Mom Guilt
Not a lot new to report. This big boy — more than 9 lbs already — has been working on oral feeds, a skill he obviously needs to master before coming home. I had some serious mom guilt — I mean I cried like a baby — when they decided to try Enfamil AR formula […]