Acceptance

Acceptance is, by definition, "a person's agreement to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit". That is a word that will probably play a big role in sweet Addie's life and in the rest of my & Philip's life. We are going to spend many long nights as she gets older, praying that other children will accept her regardless of what disabilities she may (or may not) have as a result of her brain injury. Philip & I will also pray continually that Addie can accept life with her shunt and whatever challenges come her way without accepting any limits others may place on her ability to achieve great things. For now, acceptance comes to us in the face of Addie's impending shunt surgery. We have come to a point that we are accepting the fact that Addie needs a shunt. Her head is not going to resolve on its own, and there is nothing else that we can do about that. It's been a long, bumpy, painful road to get to this point, but we're here. We are to the fork in the road that we've anticipated for months; either her head gets better or she gets a shunt. We're having to go down the latter road, and so Addie's shunt will be placed Monday morning at roughly 7:30 am. It's not exactly the road we would have chosen for ourselves, but then, none of this is what we would have chosen for our precious firstborn.

Since I last posted, Addie has made tremendous strides in the food / weight gaining department. Several days after they placed the NG tube for Addie, her primary physician made the decision to place the tube further into Addie's stomach, into the upper part of her small intestine (an NJ tube). She had lost so much weight that she was a pitifully thin, gray shadow of the baby we had watched grow over the past 3.5 months. She stared blankly into space and rarely slept. We've been through so many challenges in all of this, but I think the weight loss and its effects on Addie have been about the toughest thing I've had to witness. At least with infections and NEC and her heart, we had things we could do to help her.. with the weight loss and reflux, all we could do was try different things in hopes of finding the right thing to help make the throwing up decrease and help her gain weight. Every option had to be tried for a few days, and we just got to a point we couldn't risk trying anything else. She simply had to gain weight or we were done for. Thankfully, she has gained weight steadily and rapidly with the NJ tube. As I type this, she is 5 lbs 1.9 ounces and will probably be 5 lbs 2 oz when we weigh her tonight. A huge change for the little girl who had dropped well under 4 lbs at her toughest point in the reflux. I can't fully describe how much good it does my heart to see her cheeks filled back out, her double chin back, and her belly and legs and arms filling out. She is about to outgrow her smallest preemie outfits! Just to see her eyes sparkle again. ..it makes me cry again just to think about what a relief it is to have our baby back and how much it hurt to see her just glassy eyed. After her shunt is placed and she has recovered, we will have to eventually try her on NG, rather than NJ, feedings again to see if the reduced pressure on her head helps the reflux at all. I can't tell you how much I dread that day, almost as much as I have dreaded the shunt placement. If she continues to reflux as much as she was, and I think that she will because even with the NJ tube she still sputters and spits up stomach acid regularly, then we will have to wait until enough time has passed since her shunt was placed and do a "fundo" and place a G tube. That means they will go into her stomach and use the top portion of her stomach to tighten up the sphincter at the base of her esophagus so that she physically can't reflux. The G tube is a feeding tube that goes directly into her belly. We would then tube feed her into a place in her belly, bypassing her mouth and esophagus altogether. The G tube wouldn't be permanent but would be necessary until she can take enough food by mouth to sustain herself and continue to grow. The soonest they could do this post-shunt would be 4 - 6 weeks if all goes perfectly after the shunt, and we have stopped expecting anything but the worst, honestly. We still hope for the best but only expect the worst; that seems to have been our path thus far, and we see no reason to expect it to change. We certainly aren't negative, but we've learned that expecting best case scenario only leads to more heartache when that doesn't happen. We're hopefully she won't need the fundo and G tube, but we fully expect that surgery in a month or two.

Addie's shunt surgery will last 2 - 2.5 hours on Monday morning. We are understandably anxious, and we are just ready for it to be over so we can move on and learn to cope. The first two weeks are the most dangerous in terms of infection, and if we can make it the next 3 months without infection, that risk disappears. Then we are "just" faced with the 90% chance of a revision being necessary in the next 12 months. I can't tell you how many times in the last few days I just hold her and apologize.. .I so wish this wasn't happening to her. ..I wish I could have held her inside for another 2 - 3 weeks, giving her a better change at a "normal" life. ..I wish I could do more to help her now.. .I wish it were me facing all of these struggles and not her. I can't help but look at the left side of her head and stroke it with my fingers, knowing that in a couple of days a relatively large valve will disrupt the currently smooth surface. I know the shunt will help her, but it will forever change her life. It will forever change ours in both good ways and not so good. In the "Good" column is that it will resolve her fluid issues on her brain and give her a more steady state of pressure on her brain. Hopefully that will help her feel better more consistently, possibly help her throwing up, and maybe even help with some of her twitchiness. In the "Not so good" column is the addition of fear, fear that her shunt is failing every time she gets sick, fear that her shunt is broken every time she takes a tumble, fear that if she participates in certain activities she will damage her shunt and find herself back into the hospital. It is up to us now, though, to treat her as normally as possible. Differences only disrupt our lives as much as we allow them to. She's already proven how strong and amazing she is. We are all just going to have to accept and roll with the punches of life with a shunt from now on. I've realized how much value we place on the stereotype of "normal" in our lives. I've determined, though, that normal is what we make it. Addie is amazing, and what is "normal" for her is different from what is "normal" for an average newborn or 4 month old. That doesn't mean anything is wrong with her; her "normal" is just different than some others. We're all different, and there is tremendous value in the differences.

Please be in prayer for Addie, her neurosurgeon, Dr. Harris, and his team, our regular nurses and doctors, and for me and Philip and our families on Monday morning and throughout next week. It's going to be rough, and we know that. We have also learned that you can never fully prepare for how rough it can get, but we are doing our best by getting ahead at work and trying to rest and relax and enjoy as much quality time with Addie as we can this weekend. We have the best possible support staff at Children's, and I know we will be in capable hands. There is also a chance that her eye(s) may progress to the point that they need laser surgery, and I'm really concerned about how that would be handled if it happens this week, just days after her shunt is placed. Once the need for the laser surgery is there, they have to act quickly or permanent damage is possible to her vision. The thought of two surgeries, two times under anesthesia, and extended time on the ventilator within the same week or even two hurts my heart.

I'm praying that this time next week, things will be looking up, and that we have successfully taken this huge step in our journey home. We've known that the shunt was one of our biggest obstacles on the road home, and now that it's here, it is just as daunting as we'd thought from a distance. We're as ready as we're going to be, and we are leaving it in God's great hands. I know He loves Addie even more than we do, which is impossible for me to imagine. He made her, so not only can He heal her, but He can certainly carry her through this. We are leaving our sweet baby in His hands ultimately, not Dr. Harris', and I can't think of a better place for her to be right now.