Cliff Diving

So, I wrote a while back about the NICU being a rollercoaster (and I HATE rollercoasters, always have). Well, now that we're in the midst of surgeries, I've decided it's more like cliff diving when you face some of the challenges Addie has faced.  I feel like we fought and scraped and scrambled up a sharp, rocky mountain face, with numerous cuts, scrapes, and bruises to show for the climb, until we reached the 2 kilogram weight that allowed us to have her shunt surgery nearly 4 weeks ago (how is it possible it was that long ago?!). Once we reached that summit, it was time for the shunt surgery, so we promptly dove off the cliff we had so diligently climbed, hoping things would go well and we would land safely at the bottom. Thanks to an amazing God who worked diligently through Dr. Harris and our amazing team of doctors and nurses, we did land safely a few days later as our sweet girl came off of the ventilator and started to feel the best she has ever felt in her short but difficult life. It has been a tremendously fun 3.5 weeks since her surgery. She has been more alert than ever before thanks to the pressure relief on her brain. She actually looks at us now, rather than staring blankly ahead. She's not miserable every second of every day, and she's not exhausted by the trauma of weekly ventricular taps. Even as we've been enjoying this new little person each day, we've continued to be concerned about her reflux. So, we started to scramble up the mountain face again towards another surgery. Addie needed time to heal and recover from her last surgery, and her mom & dad needed time to catch their breath and recover emotionally with her. The doctors and nurses have been tremendous, as always, telling us that they know Addie doesn't exist in a void, and they have to take our strength and comfort level with new procedures and surgeries into account. Granted, that doesn't mean that they put off doing anything that is necessary for Addie's health & wellbeing, but they have tried to give us as much time as they reasonably could before pushing this next surgery.

So, today, we're at the top of the mountain again. Addie has recovered enough to have another surgery. She's strong, her stitches are long gone, and her incisions have healed nicely. She does continue to reflux and stop breathing once or twice a day because she chokes on and aspirates the refluxed liquid, so the surgery is necessary. That doesn't make today or tomorrow any easier as we stare out over the cliff we are about to jump off of. Addie will have a fundoplication ("fundo") tomorrow morning at roughly 1030. They will wrap the top portion of her stomach around the lowest part of her esophagus in order to tighten the sphincter that is allowing her to reflux. They will also place a gastronomy tube ("G-tube") through her abdomen into her stomach to allow a vent for her stomach as it heals and also so that we can feed her through that tube while her esophagus heals from the continued reflux over the past 5 months. The G-tube isn't permanent, but the fundo is. We hope that she will be able to start taking food orally again, by bottle, in a few days or weeks post-op, and if all goes well, the G-tube could be out in 2 - 3 months.

I think I'm more scared of this surgery even than the shunt surgery. Things have gone so well following that surgery, and I'm just afraid to rock the boat. Things just don't go well for us this year, so it just seems inevitable that our string of good fortune will come crashing to an end. There are always risks with this surgery, any surgery, and the general risks are from anesthesia, the ventilator, bleeding and infection. With Addie's shunt in place now, though, there is added risk of damage to her shunt tubing (which is also in her abdomen, close to where the surgeon will be working), an increased risk of bleeding, and if she bleeds a lot there is increased risk that the blood could clog up her shunt and create the need for a revision. Also, the infection risk from surgery extends to her shunt as it will be at least partially exposed to the outside world, as well. I'm so scared this will set off a chain of events that will lead to more surgery and problems with her shunt. Being a parent and sending any child into surgery is terrifying; you always doubt yourself and the decision to sign consent, no matter how much you KNOW in your head that the surgery is absolutely necessary and the best option for your child. I say all of that to tell you how to best pray for us in the coming days. I also say it as a way to get my concerns out in the open and try once again to "let go and let God". I know He has this under control. He will be working on and caring for Addie tomorrow morning through Dr. Angel and his team. I know He will give me & Philip the strength to get through another dive off the mountain, and I know it will be Him who catches us at the bottom and carries us while we rest and recover. I'm not just trusting our amazing medical staff to carry our angel through this; I'm trusting our Great Physician to carry her through this.

This is the last big hurdle (at the moment) between us & home. If all goes well, we will officially be working towards getting her home for the holidays. There are no guarantees we'll make it home for Christmas, but we've been told it is a "reasonable" goal.. and that's a conversation we've not gotten to have in here before! So, please keep our sweet girl in your thoughts and prayers tomorrow morning. She's come through too much for this to get her down, but it's never safe to assume anything will go as planned in here. Wish us luck and we'll see you all at the base of the cliff tomorrow.

-R