Knit Me Together: Miles of Smiles

Home Sweet Home!! Words cannot describe how good it is to be back home. It was a whirlwind 4 days. Although I had a gut feeling that this was "coming", it didn't quite prepare me for the reality of it actually happening. Even worse, nothing could prepare Meghan for what was ahead. It is a particular form of anguish that I had not yet experienced as a mother- watching this sweet little girl go through hours of painful but necessary procedures, hunger, and discomforting touch. To not be able to protect her from that is heartbreaking, and to not be able to explain it to her was so much worse. All we could do was love her through it, and in return, when she wasn’t too uncomfortable, she was smiling. It brings tears to my eyes to think of all she went through, still smiling.

We were discharged yesterday, the day after her surgery. By that night she was smiling, and the next morning I tell you what, it was so obvious she felt better than she did even before the surgery! She could hardly stop smiling. Her fontanelle felt so much better- it hadn’t been so soft in weeks. She nursed contentedly, and slept peacefully. Today I had to go back to work, but Joe said he had one of the best days he has ever had with her- she was so happy! Her poor little head looks pretty sad- a new incision, a very swollen shunt site, shaved hair, hair I had to cut to get the dressing off, and to top it all off, she has these little circular bald spots left by the fiducial markers from the MRI (removed while she was still asleep after surgery thank goodness!)- but all of that fades away when this little girl grinsJ

The new information we have from the MRI was disappointing to hear, however I am glad that we know sooner rather than later. Her Chiari malformation is a type I, where part of her cerebellum is lower than it should be. It’s the “best” kind to have, and her neurosurgeon thinks that if we correct the hydrocephalus we may see that it resolves on its own. The tethered cord is something that we will look at when Meghan gets closer to a year old, with another MRI. Dr. R. thinks we will likely have to correct it surgically. It involves removing a piece of her spine, and cutting the part of the end of the spinal cord that is connected abnormally to the bone. It is necessary though to prevent neurological damage as she grows, and the cord stretches. As for her underlying brain issue- it’s hard to say. It may be something called colpocephaly. We’ll know more as time goes on, and her brain grows in more as the fluid from the hydrocephalus decreases.

I’m at the point though of ceasing to care- that might sound strange, but medical mommy, and Meghan’s mommy are two different people. All of her diagnoses aside, she is pure, sweet joy, and I am so lucky to be her mother. I am grateful for so many blessings today- family and friends that loved us all through this week, and answered prayer in countless ways. I am not sure I would have ever learned to truly appreciate the faithfulness, and goodness of God without Meghan. We are home, she is better, and TODAY was a very good day.

“And you will say in that day: “Give thanks to the Lord, call upon his name, make known his deeds among the peoples, proclaim that his name is exalted. “Sing praises to the Lord, for he has done gloriously; let this be made known in all the earth.”

Isaiah 12:4-5