Hi everyone. I know it's been a while since our last post, but it's been a LITTLE crazy around here. You know, three kids and all! The other day I was literally trying to nurse the baby, clean up a potty training "accident", and make lunch at the same time. Seriously. Not a very appetizing combination! So please forgive my lapse in blogging - hopefully it'll quiet down a teeny bit and I'll be able to post some more pics eventually!
On a little more serious note, I wanted to give a quick update on Chloe. I sent this info out in an email to lots of you, but in case we missed anyone, I thought I'd post it here as well. Bear with - it's kind of long.
As some of you know, when she was born we noticed that one of her eyes was swollen and seemed pushed off to one side. As is expected, all the doctors agreed that it is super normal for babies to be a bit smooshed after the trauma of delivery, and that it would probably resolve itself within the first week.
Well, Chloe is now 3 weeks old, and because her eyes still look a little off kilter, our pediatrician recommended that we see a specialist - a pediatric neurosurgeon who could take a look and see if it was something that required attention.
you can see in the photo that her left eye is shifted up and back
We had our appointment with Dr. Wehby yesterday afternoon, and the news was both good and bad. The good news is that there is nothing wrong with Chloe that cannot be fixed. She has a condition called "coronal craniosynostosis", and the short explanation for that is as follows:
“Craniosynostosis” is a term used to describe the premature fusion of one or more of the skull's sutures before the brain is fully grown. The infant skull consists of five plates of bone held together by clear, fibrous areas called sutures. The sutures should remain open as long as the brain continues to grow, enabling the skull to expand and properly accommodate the brain's growth.
When a suture closes prematurely, a predictable abnormality of head shape occurs. In certain children, changes around the eyes and face may occur because of fusion of the sutures. The coronal suture is the one affecting the plate the includes the occular (eye) bone, which is why her eyes look funny.
you can see over the left eye in the photo where the two plates have fused. (this is not chloe - just a picture from online.)The really good news is that there is no threat to Chloe's brain with this condition, as long as it is fixed in a timely manner. The doctor was confident that there is no pressure on her brain - both of her soft spots felt just right, her vision is good, her reflexes were perfect. She is a very healthy little girl!
The scary part of this story is that this condition is only fixable through surgery - without surgery, her brain would continue to grow in an abnormal shape and she would become more and more lopsided over the years.
So, all that to say that we could definitely use your prayers over the next few months. We have a follow up appointment when Chloe is 3 months old (august) which will include a cat scan, and they will determine at that point whether they want to do surgery at 4, 5, or 6 months. It will depend on how big she is and how strong they feel she is. The surgery will involve the doctors making an incision across her scalp, breaking free the fused plate, and reconstructing anything that is out of shape once they get in there, including her eye socket and her brow bone. This will straighten our her eyes, her nose, and when her hair grows in it will completely cover the scar. This obviously sounds terrifying to Shawn and I, but there are some really great rays of hope surrounding this.
We were referred to Dr. Wehby (the pediatric neurosurgeon) by our regular pediatrician - never thought to really look her up or anything before the appointment. Well, of course we googled her when we got home - turns out she's sort of a big deal. She is the head of pediatric neurosurgery at Emmanuel Children's Hospital in Portland, as well as the President of the Oregon Medical Association. She's got degrees from about 5 very prominent medical schools including UCLA and Baylor, has done tons of pro-bono work for kids who can't afford surgery, is being given an award at the white house in a few months, and has people flying in from all over the country to have her do surgery on their kids. Apparently the fact that we got an appointment at all is pretty amazing. Who knew?
The other reassuring factor about this doctor is that while some surgeons go in and fix the problem with the plate, they don't necessarily fix the face along with it. Dr. Wehby works with a facial plastic surgeon in EVERY surgery to make sure that each child comes out with a perfect little face. She did a great job of helping us to understand that while it is very scary for us to hear that our baby girl needs surgery on her head, this is something she does all the time - she was 100 percent confident that Chloe will come out looking like the perfect, beautiful little peanut that she is.
So, Shawn and I are just trusting right now that God has us in the right place, with the best doctor, and that Chloe will get everything she needs when the time is right. We are so thankful for the fact that she is healthy - many of the kids who end up with this doctor are there for tumors, spinal problems, or things that will affect them for their entire lives, or even threaten their lives. We have a healthy baby girl who will never remember this ordeal, and will most likely never have to worry about it again once it's fixed. Please continue to pray for us - for peace, for wisdom, and for the patience to wait this out and know that God is in control!
Thanks for reading all the way through this long post - we are thankful to have great friends and amazing family to help us through this next few months!
