Oliver Perkins

First post: May 4, 2019 Latest post: Jun 4, 2019
Friends & Fam,
I'm starting this site to update you on Oliver as it has become apparent that we are going to be on a journey here with our sweet little Ollie! :) We are so blessed with friends and family who are so present and with us during a difficult season. Here is a the background of where we have been and I'll update as we move forward.

When Oliver was born on March 8th, immediately doctors and nurses were struck by how loud and labored his breathing was. We were told he had a floppy larnyx, which is very common diagnoses in babies and typically they outgrow so we headed home thinking this was nothing to be too concerned about.

When Oliver was 3 weeks old, the breathing got worse and we noticed some major swelling on the left side of his neck. Our pediatrician sent us to the ER where Oliver had his first of many ultrasounds. They discovered a mass on his neck called a Lymphatic Malformation. From what we have learned,a LM is a mass made up of tons of lymph vessels. In a normal person, the lymph vessels are straight vessels that Lymph drains from. In Oliver, his lymph vessels look like a mass of spaghetti therefore the lymph fluid gets stuck and swells inside his neck. Because of Olivers age and size, this has presented a major problem for his tiny airway. The mass pushes against his airway and causes his breathing to be compromised. This has been a huge source of anxiety and stress for us as parents, as we are constantly monitoring his breathing and discussing what is "normal" and what is not..

Because of the type of mass this is and the risky location, we have been told removing it is not an option especially when he is this young. To treat it, doctors do a surgery where they drain it and do sclerotherapy which is supposed to shrink the mass and scar it over. Unfortunately, because of his size this involves intubation for many days. It also can take multiple procedures before being completely resolved. So far, Oliver has had this done 3 times. This is a rare type of mass and even more rare to need intervention so early. We have doctors at U of M and doctors at Spectrum in GR co-managing this for us. Unfortunately, he has spent 14 days of his short 8 week life in the hospital but we are thankful to be so close to 2 amazing children's hospitals who are loving our little boy so well!

I'll continue to update here so that it can be easily forwarded on to friends and family - thanks for continued prayers. They are felt!

Jenna, Kyle, Luke, Bennett and Oliver