If you don’t ‘follow’ me on Instagram you probably don’t know that our sweet Jack is in the PICU at Seattle Children’s. About two weeks ago we noticed labored breathing/wheezing on inhalation. After two Urgent Care visits, a visit with his pediatrician, and even a trip to the ER, we got a referral to a pediatric ENT. He did a scope through his nose down to his voice box and he was diagnosed with mild laryngomalacia (a weak/floppy voice box). The doctor said that the abrupt noises Jack was making plus the chest retractions shouldn’t be happening with that diagnosis so they scheduled him for a microlaryngoscopy to sedate him and look past the voice box into the trachea. (We are SO thankful for amazing doctors who have gone above and beyond to find answers for our little guy!) On Monday I brought him to Seattle Children’s for this procedure and they discovered that he has a subglottic hemangioma. It is benign and treatable with medication and no surgery. It’s basically a birthmark near his voice box that does get bigger over time and obstructs the airway. He was most likely born with it and they get bigger between 4-8 weeks of life (makes sense with our timeline). They looked at his trachea in an MRI scan because it has some flattening as well but that is something that can improve as he grows. Jack has been intubated & sedated since Monday morning. Whenever he gets a little agitated his stats drop & they’ve had to bag him. I feel so powerless sitting there when a stampede of doctors/nurses come in and there are all kinds of words and numbers being thrown around. They are amazing at what they do and I know they work fast for a reason. It’s just so hard to fight your parental instinct to rescue your baby. He’s stable and doing okay...he just gets mad and likes to let everyone know. They tried taking the tube out yesterday but the hemangioma hadn’t shrunk much & Jack didn’t do well breathing on his own so they had to put it back in. What was supposed to be an overnight stay has turned into at least a week in the PICU. My mama heart has struggled seeing my littlest bee with tubes & wires attached to him but the staff here is incredible and he is in great hands. I was actually encouraged to go home last night and I’m so glad I did. It was wonderful to see Oliver and Brynn & Kevin and I got some actual rest in our bed which we both so desperately needed. Thank you to our family members who are helping take care of Oliver & Brynn as well as shuttling around O and feeding us! We couldn’t do this without you! Please continue to pray & send happy, healing thoughts for Jack-for the medicine to shrink the hemangioma so he can breathe on his own and we can go home. We are so thankful it’s treatable and that he has amazing doctors and nurses taking care of him. We just want to be able to love on him again and have all our babies under the same roof. 💙 

 

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