Life is crazy and life is hard, but is that a bad thing?
Virtues
Brianna and I knew that life with Shirley would bring challenges that the average new parents wouldn't have to face. Even though we knew that, there was no way we could have been prepared for or even known about half of what it would actually require from us. Recently I have been thinking a lot about how I think about the challenges that have arose from having such a wonderfully different child. Shirley's care is very demanding and sometimes it simply feels unreasonable. Her care takes a lot of effort. Shirley has at least one appointment per week and often times up to to three. She has a cardiologist, gastroenterologist, pediatrician, nutritionist, physical therapist, and a speech-language pathologist (our feeding therapist). We also have a medical supply company and pharmacy that we are constantly in touch with to ensure we have Shirley's everyday essentials met. When Brianna isn't busy with one of these appointments or phone calls she is all of these things to Shirley every day. The Dr(s) and therapist don't care for Shirley they really just monitor and give advice. Brianna actually has to implement these things in her everyday care.
Brianna gets up multiple times a night to pump and store milk, heats the stored milk, loads the milk into the pump, starts the pump, an hour later shuts off the pump, flushes Shirley's tube and then goes back to sleep for a few hours before repeating the same thing. That is all done while Shirley is asleep... Around 6am Shirley gets up for the day, and if the excitement of waking up doesn't cause her spit up her entire previous feed she is having a pretty good day. She gets meds at 6am and 9am and a feed somewhere in between. Each feed while Shirley is awake starts with trying the bottle. Heat the bottle for 5 mins just to have Shirley reject it almost entirely, now that you've devoted 20 minutes to feeding orally she has to the be tube fed in order to get the majority of milk. You can't tube feed her without it being a two handed effort so now you are about 45 minutes into feeding her. You can't move her much within an hour of being fed because of her chronic reflux and the worry of her spitting up all over herself and Brianna. By the time she is done eating its nearly time to pump again, or time for an appointment, or time to pick up a prescription, or time to go shopping, or time to get something done around the house, or simply time to take a 10 minute break and catch your breath.
Brianna will tell you that I can't really stand complaining... and as I write these things I think I am realizing how little I understand how much work it is to care for Shirley every day. I have never had to spend a significant amount of time with Shirley alone and quite frankly I'm not sure how long I would last. I know I would be capable but I think I would be a compete mental wreck after the first day. I don't really have a major role in Shirley's care until I get home from work and as most people can attest the last thing you want to do when yo get home from work is feel like there's more work to be done... But there is, and its not a bad thing. Thankfully Brianna and I can double team Shirley's care on the weekends.
Now if you think that sounds like a bunch of complaining it wasn't intended to sound that way. We love our life and we love having Shirley here with us! We were just talking about how good we have it in the greater scheme of things. Shirley Requires a lot... but man is it great being her parents. She is so wonderfully unique, so happy, so cuddly, so content, and so darn cute its almost irresistible! Right now as I'm typing this Brianna is tickling the crap out of her and she is just laughing it up, smiling and holding her feet with a face that seems to relate that she doesn't want you to stop!
The whole reason for this post was a thought that has been creeping into our minds recently. That is, that we just wish it were easier, or that we could skip ahead to when Shirley doesn't have a tube and its not as difficult to care for her. When I really start thinking about those thoughts though, as I have been over the last few weeks, I can't help but think that by simply thinking that that we are missing out on a great opportunity. We accomplish nothing by wishing it were easier or hoping the time passes quickly to when she will need less hands on care. Instead we will miss out on the opportunity to grow as people and parents. Isn't patience a VIRTUE? Doesn't hard work build character? In fact what many people consider to be virtues (diligence, patience, charity, humility, temperance, and kindness) are all things Brianna and I have to gain from the apparent difficulties of Shirley's care. By wishing it all away and viewing some tasks as necessary evils we gain nothing... We have everything to gain however by accepting the challenges placed before us and taking advantage of the opportunity we have to grow. Above any of the worldly virtues to be gained from our circumstances we have the opportunity to build our faith as believers. Our faith has certainly been tested and we have both grown and we look forward to the opportunities we will have to grow as life continues on in whichever direction it goes.
So rather than complain about things, we want to see all things as opportunity. Though sometimes it will be easier said than done, with only a little foresight it can clearly be seen as the best choice.
Medical Update and Major Gains
Shirley weighs in at over 13lbs and looks like a very plump and proportionate baby. She is a tiny little girl according to the stats though. She is in the 6th percentile for weight and the 1st percentile for height among her peers. Her height to weight ratio is very good though, somewhere in the 60th percentile. We were also able to start introducing some solids into her diet. I've always struggles calling mashed up nearly liquid food "solids" but I guess anything that consist of more than milk, water or juice can be called a "solid."
Her last cardiology appointment went well. She had an echo and everything was looking great. Her function is so good currently that they have begun to decrease her drug schedule. Within a few months if everything goes as planned they would like to have her on only one medication for her heart function. She will still be closely monitored but it feels like a huge step in the right direction.
Brianna has been doing a ton of research on how to wean Shirley off her tube and we have been having an ongoing discussion with her feeding therapist, GI doc and cardiologist about how to do it well. Its not very easy to make an infant eat orally that has never had to rely on eating orally for nutrition. Shirley knows pretty well that she will be fed by the tube no matter how much she takes by mouth... because of that most people say that kiddos in her shoes can go days without actually having normal hunger cues. It is a little daunting to think of taking Shirley's tube out and more or less forcing her to eat by mouth, but it is really one of the best ways to get her away from being tube dependent and eliminating her chronic reflux. We are pretty confident, though, that Shirley will be able to pick up the skill and within the next few months its our hope to get rid of the tube once and for all.
She does have one new medication being added but its not for her heart. The GI doc wants to try one more med to help Shirley's stomach digest more efficiently before we attempt to wean her by simply taking the tube out. For whatever reason children with heart condition like Shirley's have what is called delayed gastric emptying... pretty much sums it up in the name. Because her stomach isn't doing its job as well as it could Shirley's already insufficient hunger cues are hampered even more by the fact that her stomach is never really that empty. Maybe this treatment will help, maybe it won't, but ether way we think she will be tube free in the coming months!
We have a ton of Shirley pictures and videos to post so... yeah... feel free to marvel at her cuteness.
-Joseph
