May 14, 2016

A Fire In My Belly

Ever since our last care conference, I've been feeling very lost and unsure of a lot of things. I've continually been promised through blessings that Aiden will live a long and happy life. But it's so incredibly hard to hold on to that when each day you are faced with new obstacles and doctors telling you it isn't working. Since David and I had to discuss at what point we would let him go, I've felt myself losing my faith and hope for him.

I've been wandering around in a fog, even feeling detached from things around me. And feeling very distracted as these solemn emotions and worries weigh on my mind.

We've been invited into a group at PCH called Rainbow Kids. It's specifically for families with children that have critical complex medical conditions that are life threatening. I definitely have a love-hate relationship with it. It is amazing and offers an incredible amount of support. We've had the opportunity to meet some very special families. Everyone there gets it. It's a great club to be a part of, but not one you'd ever choose to be in either.

They meet every tuesday and provide you with lunch. It's a nice chance to get out of the hospital room and chat with other families. Like I said, everyone there has experienced the ups and downs of having critically ill children and gets it. We can all relate to each other and there is a mutual feeling of empathy and sympathy that is hard to find outside the hospital.

This past tuesday I had made plans to take the girls out for awhile while David stayed at the hospital. I decided to leave a little earlier and not go to the lunch this week. But as I started to walk out of the hospital, I couldn't shake the feeling that I needed to stay. So I went back, and joined David for the lunch.

During lunch they give you the opportunity to introduce yourself and the medical condition your child has. As we went around the room, I couldn't believe it when a mom said she has a son with a skeletal dysplasia! A different one than Aiden, but a type of dwarfism nonetheless! After the introductions, she announced that she needed to come talk to us and scrambled over to our side as everyone in the room snickered. I could tell she was just as relieved and excited as we were to have someone to relate to.

As we chatted for a bit, she asked if we have been able to find other families with this kind of dwarfism yet. When we told her no, she logged on to her phone and started to search with us through the Little People Of America site. She found a group of people listed there, then went to Facebook and looked them up with me. 

I'm so glad she was there and helped us find that. We haven't been able to find those resources ourselves just yet. Even with his skeletal dysplasia being so rare, there has been a lot of information to shuffle through and try to understand on the Little People website.

This Facebook group only has 600 people worldwide in it. And those 600 people in the group consist of moms and dads, some grandparents, and individuals with dysplasias within the SED family. And they are all amazing. Within minutes of being accepted into the group, we were welcomed and messaged by a swarm of people. They all offered us tips and advice, and most of all hope.

As I sat in the pumping room, I talked to and (I'll totally admit it...) Facebook stalked several families, and I bawled. So many babies have and still are following simular paths to what Aiden is experiencing. Not all of course, these dysplasias are relative to the individual person. But he's so similar to the majority of people I talked to.

And the best part is there is one other family in Utah with a child that has his same dysplasia.

I cannot tell you how relieved I am to finally find a support group. I know I was supposed to go to the Rainbow Kids lunch that day, the spirit was practically screaming at me to do so. It gave me a renewed sense of energy. We've got this!

I'm sure we've been driving his medical team a little crazy. After all the information we've received from these other families, we've been even more nosy and involved. We've had his dietician sit down and outline all the numbers to make sure he wasn't being over fed. We've handed his doctors and nurse practitioners names of other specialists within the Little People Of America as well as locally to contact. I even had our family pediatrician call his neonatologist to put his own two cents in on Aiden's course of care. I'm sure we are gaining quite the reputation around the NICU, but this kid is one of a kind. I have no doubt I'll end up teaching doctors about him his entire life.

Aiden is also making some great steps with his progress. We've finally got his sedation in a good place. He is comfortable and isn't having agitation while also having normal awake and sleep patterns. His pulmonary hypertension looks good enough that they are going to give him less medicine for it. And he's been steady enough with his CO2 levels that the doctors no longer feel the need to constantly be monitoring them.

And as for ventilators, his doctor decided he's in a good place right now. So we are going to keep him on the VDR Ventilator and give him a chance to continue growing before we push weaning again. 

The attending neonatologist that wanted to put him back on the jet ventilator is leaving for two weeks, and the next attending to come on is the one that was wanting to go to the conventional ventilator. So David and I hope that she can get him on to the conventional before they switch attending doctors again.

Big yawn


  1. Happy dance!! Continue to find that community that knows what you're going through and can relate. I was so surprised to find so many people with my syndrome when I finally started looking. And I can totally relate to having to explain your syndrome to new doctors for the rest of your life. You will be (or already are?) the best advocate for your son and his syndrome and will be able to weigh in as doctors give suggestions or ideas about his care.

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