This little cutie turned two back on October 25th! It's hard to believe it has already been two years since she joined our family. She has completely changed our lives for the good and has taught our family the true meaning of love.
The "Through" part of the post title is there because this little girl is off TPN!!!! You have no idea how much I've been looking forward to finally being able to say that! WAHOO!!!
A few weeks after her birthday on November 8th, I noticed there was a small leak in her line as I was unhooking her from her TPN in the morning and flushing her line. Leaks in TPN lines are no good because they can lead to an infection, so she and I took another fun (yes, I'm being sarcastic) trip to the E.R. up at Primary's. For some reason they seem to know Carly very well there...ha! As the IV team examined her line, it became totally occluded and wouldn't flush or draw blood back due to the leak, so they knew it would absolutely have to be pulled and replaced with a new line. Since Carly has been progressing so well and has been SOOO close to coming off of TPN anyway (she was down to 10 hours of TPN every other day), I asked them to please consult her GI doctor, Dr. Jackson, before they replaced the line to see if he'd be okay with just pulling it out and seeing how she does. Otherwise, they'd be putting a new one in that would most likely end up being pulled in a month or two anyway, which would waste an access site (sites where central lines can be placed are limited so I was really concerned about that). He reviewed her labs, charts and weight gain, and agreed she was doing well enough to finally come off TPN. Yay!
So they partially sedated her and then the surgeon came in and yanked the line out. As I sat there and watched them remove her line, I couldn't help getting a little emotional. That line has been such a HUGE part of our lives for the past two years. Caring for that darn thing has been the hardest thing I've ever done. But that line is also what saved her life and has kept her alive for the past two years. I am so grateful for it but at the same time so glad to be done with it!
I also thought about the many long, serious discussions we had with the NICU doctor's about Carly's future after she lost her intestines. They all agreed that because she was missing the most important parts of her small intestine (all of the ileum, most of the jejunum, and her ileocecal valve) that she most likely would need to be on TPN for the rest of her life. And here I was, just two years after they told me that, witnessing the removal of the line they told me she'd never be able to live without. I knew as I watched the surgeon remove the line that I was bearing witness to a miracle. We have truly witnessed God's healing power in the life of our little Carly. There isn't a day that has gone by since she joined our family that we haven't prayed for her intestines to recover/adapt enough to be able to get off TPN. Bryson and Lilly have been praying all year that she'd be able to get off her TPN by Christmas and their humble, sweet prayers have truly been answered!
Carly still has a G-tube button in her tummy, which we run hydration fluids and feeds through on occasion, but I'll take a feeding tube and everything that goes with that over TPN any day! She's still on numerous vitamin and mineral supplements and will remain on those throughout her life to help prevent deficiencies that she'd have without them. She'll continue to have frequent lab draws throughout her life to keep everything in check. She'll always struggle with staying hydrated, and still has MAJOR poop issues, which will hopefully get better as her intestine continues to grow and adapt... but I cannot even begin to tell you how much easier life has been without TPN! It has been SO WONDERFUL and such a gift! Oh, and she can FINALLY take real baths and go swimming, which has been so fun for her!!!
It's has now been over a month since Carly came off TPN, and she's still doing so great! At her follow up appointment with Dr. Jackson on November 21st (which was also the same day Mike landed in the ICU...boo!), she had lost a little weight, which I was really worried about, but Dr. Jackson said that is typical after coming off TPN and didn't seem at all concerned about it. They will be watching her weight closely throughout her life, but lucky for us Carly eats like a maniac, so hopefully she'll be able to start packing on the pounds so she won't ever have to go back on TPN! Since coming off TPN, she has seemed excessively hungry and thirsty and has been eating SO MUCH food and drinking TONS of her specialized nutritional formula. You would not believe how much food & formula this girl can pack down! She still sticks to a strict high protein/high calorie/high complex carbohydrate/no sugar diet to help her remaining intestine function as optimally as possible. We also include cooked veggies even though her body doesn't digest/absorb them very well (they come out looking just like they went in...sorry if TMI...ha!), but she still loves them, especially broccoli!
She's been working with a speech pathologist over the past few months because her speech is a little delayed and she has a few behavioral issues that we are working through, but given all she's been through in her life, she really is progressing and developing remarkably well!
She truly is a walking, living, breathing miracle and it has been such a gift to witness God's power working to heal her little body. The power of prayer is real!
Since Carly is a HUGE David Archuleta fan, and because this song testifies of the power of prayer, I had to share. :)
Favorite quote this week:
"Believe in miracles. I have seen so many of them come when every other indication would say that hope was lost. Hope is never lost."
-Elder Jeffrey R. Holland