Throughout my pregnancy with Monkey we always noted how DIFFERENT he was than Bear.
He kicked. He moved. Bear had an echogenic focus in heart that appeared at 36 weeks, while Monkey had a Single Umbilical Artery. Both soft markers for chromosomal issues, however, by themselves they don’t really increase your risks.
After Monkey was born they noted that his legs were “a little stiff”. And he has micrognathia, which Bear also has but no one ever mentioned it, much less that it was a dysmorphic feature. Also both his middle fingers are bent like when you make a fist. He CAN straighten the right one, but it isn’t easy for him. The left one is stuck.
Our pediatrician planted the seed that we might as well test him. I had been dead set against it for a few months because of needle sticks and taking more blood, etc. I ended up calling the geneticist and she wrote the order for the blood work. I had no intention of having it drawn anytime soon.
We headed to the orthopedist for some checkups. We wanted to check on Bear’s hips.
Hypertonia, especially as severe at Bear’s, can cause the hips to not locate correctly as he grows. Couple this with his minimal weight bearing and it’s a recipe for hip dysplasia. He also has a large lump on his rib. So we also went for peace of mind about whether he has signs of my bone disorder. We decided to take Monkey and get his hips checked as to whether there was any anatomical reason for his “slight stiffness” and check on his fingers.
Finally, good news! Bear has no evidence of hip dysplasia. The orthopedist was shocked and said his hips look beautiful. And, he has no evidence of my bone disorder as of now.
The orthopedist straightened Monkey’s fingers right in the exam room. He said there is nothing orthopedically wrong with them, they’re contractures. After a hip x-ray he also ruled that there is nothing wrong with his hips. He said it’s just with his really high tone (aka hyperonia) that this has happened. Both Hubs and I were shocked. I really feel like everyone was trying to lessen the blow and completely underplaying how bad his tone really is compared to typical. We only have Bear to compare him to and he seemed totally different. He had a newborn head flop, he needed support from both hands when holding and moving and he moves all his limbs.
And then it was just smacked across our faces by the orthopedist. On the way home Hubs and I determined to have the blood draw. We dropped Bear and my Mom off at our house and took Monkey by ourselves.
Fast forward 4 weeks and we call the geneticist to check in. Hubs goes to work and calls me about 3 hours later with the awful news. He says “The geneticist called back”. Insert a really long pause here. I knew. I just knew. My stomach dropped. Literally. I had just put Monkey in the swing to nap. I was still half bent over placing the burp cloth across his tummy. I lost it. I collapsed to my knees and sobbed so hard it physically hurt. “Monkey does have it”. It hurt so badly to hear those words. Hubs asked me if I wanted him to come home and through my gut-wrenching sobs I managed to choke out “It’s up to you”.
He thankfully said he was coming home and I picked Monkey back up and snuggled him on the couch. I buried my face into his tightly swaddled body and sobbed with my entire body and heart. It really felt like I was turning inside out in pain.
This wound is still fresh (only a few weeks old) and it’s really deep. It’s taking a long time to heal and stings every time I mention it. Evidenced by the tears I’m wiping away as I write this.
My heart hurts so badly that I’m afraid it will never heal.