Happy Saturday Friends!
Oh, the joy of weekends. I honestly don’t think there is anything better than it being a Friday night and knowing that you get all weekend to do whatever you want. Then Sunday night hits and it’s the complete opposite. Do you hear me?
So I’ve been getting a ton of questions lately about Rhetts health and his latest visit to the specialists in Vancouver at Children’s Hospital.
A Recap of why he needs to be seen by Specialists:
Rhett was born not breathing well as he has smaller airways than the typical baby. He was also born with a rare condition called Microtia Atresia, it’s the absence of an ear canal and the deformity of his ear. He was also born with a slight recessed jaw on that side called Hemifacial Microsomia. On top of those issues he has Torticollis which is a pinched muscle in his neck which causes him a lot of pain and causes his head to tilt to the one side. For the last 4 months we’ve been going to Chiropractic appoints two times a week which has all been out-of-pocket. He also has had some minor issues like; breastfeeding issues, tongue ties and kidney swelling.
A few questions I have been getting:
Q: Can Rhett hear out of his little ear?
A: Yes! He can hear 55 decibel’s in that ear. So they think there is an ear canal right under the skin.
Q: Why was he born with a deformity? ( Yes I actually get this question )
A: Babies ears, jaws and kidneys are formed between 5-6 weeks of pregnancy ( crazy huh?!) and it’s just a rare genetic deformity that has no cause at all. When I gave birth to him and found out he had a deformed ear I was so angry at myself because I felt like it was my fault. Before I found out I was pregnant I took one dose of cold medication and I thought that was what caused it. But the doctor assured me that nothing can cause Microtia. It’s just an unexplained deformity that happens to 1 in 20,000 babies.
Q: Did you know that he had Microtia when you were pregnant?
A: No, it didn’t show up on any of the scans and was a complete surprise to me when he was born. It was a hard pill to swallow as we thought we were having a healthy baby. He is healthy and we are one of the lucky ones.. but he’s had so many issues over the last 8 months and I wish he didn’t have to deal with all of these complications. Due to all these issues he’s been an extremely colicky and fussy baby.
Q: Will you get surgery for him?
A: Yes, we have a plastic surgeon in Vancouver and we are currently discussing a Medpor surgery on his ear between the age of 4-5. It’s putting synthetic material in his skin to create and form a realistic ear. The other option is getting a rib graft surgery done between age 9-10 and that seems way too invasive to us. He’s also getting his skin tag on his face removed in six months by our plastic surgeon.
The last year has been filled with so many challenges, especially for me. It was the hardest between 0-6 months, there were many days I would go to bed crying or wake up frustrated and exhausted. Still to this day he sleeps in my arms all night long. It’s how we slept in the beginning as I was nervous about his breathing and now he’s just in the habit of sleeping that way. He has been our most challenging and exhausting baby and I feel like in the process, I’ve lost myself. I sometimes do not know who I am anymore as I feel like I’ve dedicated every waking second in the last 8 months to him – and 10 months prior to that growing him. Its been tiring. So tiring that three months ago, we decided we couldn’t take the chance of getting pregnant again, so Glen went in for THE procedure.
God has for sure fueled us and given us so much grace and patience over the last eight months for each other and our kids and in the process we’ve learned so so much about acceptance.
Rhetts little fat hands and chubby cheeks make up for all the sleepless nights. I truly love being a mother and I find one of the most special stages between age 0-12 months when you have that full breastfeeding bond.
Last week we were given a brand new crib from Lussobaby and so we’ve been making strides to get him sleeping in it. So far he’s only been napping in it and sleeping the first chunk of the night ( 7 PM – 10:30 PM ) but hey, it’s better than nothing!
and of course, I know you will all ask, the sign above his bed is from Well Wood Designs. When we first moved into this house she made custom name signs for Brinley and Rhett and they are pieces that I will hold dear for years to come. She’s Canadian and makes the most beautiful pieces.
I think I will be saving our Vancouver trip for a different blog as this one is coming up on 900 words. Thank you for stopping by the blog to read up on our sweet little Rhett. He’s by far one of the biggest blessings in our lives and has taught us so much. I hope he puts a smile on your face as he does ours!