Last week, we ventured to Monroe Carell Jr. Children's Hospital at Vanderbilt for our third Spina Bifida clinic. Since Kate was born, we've visited back to our short-lived time in Nashville, Tennessee to see her providers and explore her progress with her diagnosis.
A typical "Spina Bifida Clinic" day is a long and enduring one. I often spend the days and weeks prior to her appointments over-thinking and catastrophizing. Each time we go, we visit several providers and our day goes like this: Complete MRI/Scans for neurology and urology, then spend the remaining hours with each provider, such as neurology, urology, GI, orthopedics, PT, OT, nutrition and potentially other providers if anything out of our "ordinary" comes up.
At Kate's most recent clinic day (10/11/21) we had the pleasure of spending brunch and coffee with a fellow Mom I was fortunate enough to meet during my fetal surgery journey, along with her sweet little family. Kate was able to meet her first friend who shares the same diagnosis, and although they will always have different journeys, as no two are the same, I was bursting with happiness knowing that sweet baby we met was one more person that our Kate can relate to and I can't wait to see their friendship flourish. We traveled then to the MCJC for her MRI and to get the day started. The MRI is the hardest part for me. Watching your little baby strapped down with straps and buckles with noise-cancelling headphones, all while praying that paci just stays perfectly in her mouth during the next few minutes of her scan. I spend every MRI praying and closing my eyes while patting and rubbing on her little feet, praying for peace and comfort for her during that time. I also pray that he helps me to be strong for her, too. I am fortunate enough to say with each MRI we've had since birth, there is no sign of swelling or hydrocephalus and I praise God for that each and every day.
Kate's renal scans continue to look healthy and operating well and we plan to have our first urodynamics test at our next clinic day in three months. During that time, we will be hoping that her bladder has the ability to hold urine and empty steadily and completely. Kate's PT and OT through the hospital on her clinic days sang her praises last week and were her biggest cheerleaders as she practiced rolling, sitting up, reaching and grabbing and bearing weight. Her eyes lit up as they cheered her on and praised her - cue the tears, right?! In terms of her GI, we continue to struggle with constipation, a common difficulty for most kids with Spina Bifida. Our journey there is a work in progress! Her orthopedic doctor is anticipating that she may benefit from some type of brace to help assist with walking and we should know more in the next 3-6 months, although much of this is based on when she reaches some of her milestones. I can already predict that should Kate need braces for her ankles/legs, she will most definitely be sporting them in the absolute best fashion! Without a doubt 
Our clinic days often end in winding through the Nashville traffic to head home. I make calls to family and friends to give them updates on Kate and always feel I can breathe a little easier and feel a little lighter as each visit ends when we receive positive news. She is without a doubt thriving and defying odds as she is because of God's hands and purpose for her. Kate's next clinic day will be in January as we begin to approach closer and closer to her first birthday. Until then, we will try to focus on the present and enjoy each day with her and all that she does.
Outside of our clinic days once every three months, Kate has a normal day like most all babies. Her days consist of bottles, baby food, daycare and being entertained by wild big brother. Once a week she has PT and OT and she is doing such a good job. I love seeing her learning new things and making leaps and bounds. She is sitting up and is Miss Nosey Rosey! We still struggle with rolling at times, but girlfriend is very chill and loves hanging on her back and side. She is loving all the foods but the jury is still out on prunes - honey, I can't blame ya one bit! She will sleep anywhere and everywhere and her smile lights up any room. Her daycare teachers love her which makes me love them even more. She watches her big brother in awe and loves stealing looks from Daddy, although I'm convinced I am definitely her bestie!
"I would endure fetal surgery and the pain and struggles that came with those three months before her birth a thousand times over - it was completely worth it as soon as I heard her cry."
In closing, I had the privilege of talking to a new friend the other day who was two days shy of fetal surgery. Never having spoken before, we talked for nearly an hour and it was the best hour I've had in a long time. It was a time for me to share my journey through fetal surgery with her and answer questions, but oh how it turned out to be so much more for me. I explained that being months out of surgery and having spent six months with our sweet Kate, that the moment I heard her cry when she was born - I had a moment where it felt like time stood still and I just cried thinking "I would endure fetal surgery and the three months of recovering and bed rest a thousand times over for this moment."
WordPress.com
No comments:
Post a Comment