Then our little Mira Cole got here, and she sailed through the most difficult things I've ever personally witnessed. These horrendous experiences no one should have to go through, and here's this tiny little beautiful baby, taking it all in stride, acting like it's no big deal. I got used to hearing time after time "she's great" "nothing's wrong" "everything went better than expected" etc. etc. I didn't realize that I got so used to hearing the best case scenario, that I subconsciously started expecting everything to always be the best case. After all, she's beaten so many odds thus far. This underlying expectation that I was unaware of is what made today really, really hard.
Today we had her hip ultrasound, to make sure her hips are growing in properly, and her CMG. A CMG is where they measure the pressure in her bladder and monitor the activity of the bladder, bowels, and sphincter. I thought today would be pretty routine. The only thing I was dreading was finding out whether or not we were going to start her casting and surgeries on her club foot. Don't get me wrong, I'm happy her foot can be helped, but I wasn't looking forward to starting more surgeries on her when she's just barely healing from her other surgeries.
So orthopedics came in, and I was super relieved when he said we're going to wait probably another six months until we work on her foot. This will give her skin some time to firm up and not be so susceptible to skin damage from the casting. Phew... I sighed an internal gasp of relief. But then he pulled up the computer and looked at her hip ultrasound from that morning. He told us that by now, the hips are supposed to be settled properly into their sockets, but Mira's right hip has failed to do so. If it doesn't settle into the socket properly in the next four weeks, she's going to have to wear a brace that will go up over her shoulders, mount to her legs, and pull her legs up towards her chest. This position will force the hips to settle into the sockets in the proper alignment. This was kind of difficult to take in because it has kind of been the first bad news we've received when monitoring her progress. Okay, four weeks, I thought "you can do this baby girl, no big deal, a socket isn't going to take you down,". I chewed that over while I waited for the last doctor of they day to come in. Urology.
We've been anxiously awaiting our next meeting with the urologist to find out if not cathing is still okay. Well, we got some very unexpected news. It turns out the CMG revealed some troublesome results. Mira has been wetting her diapers, which is a great sign... usually. But in her case, it was actually a symptom of something else. In a baby her age, the bladder is supposed to be relaxed almost all the time. For Mira, this is not the case. Her bladder is constantly convulsing, which is why we were hardly getting anything when we were cathing, because her bladder wouldn't allow anything to stay in it for long since it was always agitating itself and pushing everything out. Another problem is that when the bladder convulses to push urine out, the sphincter is supposed to open to allow Mira to urinate without complications. Unfortunately, Mira's does the exact opposite of what it's supposed to do. When Mira's bladder contracts and pushes out urine, her sphincter also contracts, and doesn't allow the urine to come out when it should. This causes her sphincter and bladder to kind of fight with each other instead of work together the way they should. This is also when the concern of kidney damage comes in. If the sphincter doesn't allow the urine to come out, it will reflux backwards though the system, into the kidneys, and start damaging the tissue. This is the number one thing you want to avoid because the kidneys do not heal themselves. Once they're damaged, you're on the track to dialysis or a transplant.
All of this was a lot to take in, and I was fighting back tears the whole time the urologist was explaining what her system is dangerously doing to herself. Then the treatment options were discussed. We are now cathing again... that alone made a tear or two escape from my eyes as soon as he said it... but now we're also giving her medication three times a day presumably indefinitely. This medicine will force her bladder to relax, and her dose will be upped every six months to a year. If the medicine does not cause her bladder and sphincter to act accordingly by the time she is five or six years old, surgeries will be required. He said sometimes the medicine can fix it, but that only applies to a very small window of children, so to monitor her progress, but don't expect this to fix it. There's that word again "expect". We should expect to be cathing her and medicating her indefinitely, and expect that more surgeries could be around the corner by the time she's school age. Geeze, and I was dreading surgery on her foot... I was not expecting to discuss surgery on her organs today, let alone staring into the cold, hard eyes of this being a likely reality. Expecting, expecting, expecting. The things I was expecting, the things I was NOT expecting... And in all that time, I forgot that I wasn't supposed to have any expectations. Had I stuck to that rule, today wouldn't have hurt so bad. It wouldn't have knocked the wind out of me, or hit me in the gut hard enough to do so in the first place, but I unknowingly had underlying expectations.
I'll have to remember this lesson, and remember it hard, because I don't want blindsided by my own feelings lurking in the shadows like this again. What I want to focus on is the fact that her overall health is great. She is gaining weight, and today hit her own personal record. She is officially nine pounds, her heaviest yet, eating great, sleeping great, and... (Drum roll, please), she started smiling at people the other day!!! Actual smiling, not having gas stuck and smiling in her sleep, nope, she is looking right at me and giving me a beautiful, genuine, ear to ear grin that is pure amusement!
So tomorrow I will start administering her meds three times a day, and once again, cathing my beautiful, grinning baby. I'll also start doing some hip therapies to try and encourage her hip into the socket properly. I'm sorry that her break was short lived, and I'm sad that she couldn't beat the odds on this one, but she's accomplished so much, and even though I cried and it was hard to take in, this is not the end of the world, and we will be okay. She will be okay. It will be okay. And I will try to get a handle on my underlying expectations, and that, too, will be okay.
