what a day friends what a day! i feel like now we can sit back and relax and really enjoy yet another holiday at HOME. whenever we leave an appointment with otto a song or poem or verse always comes to my head and just joyful and triumphant was just clear as day in my head because that is exactly how we left helen devos yesterday. so just joyful and victorious and triumphant.
i knew that this appointment was going to be a pretty routine one but i never want to let myself completely believe that for fear of being blindsided. i was blindsided at our appointment before surgery and i just don’t want to be unprepared again.
so how did it go yesterday? it went as good as it could go aside from being totally healed. the echocardiogram and the ekg were a struggle. otto is so skeptical and wary of anything medical that he instantly gets freaked out when even a blood pressure cuff is presented. we had our musical books, mickey mouse and blanket ready to go and got him calm and still enough to get the measurements and pictures that we needed to examine. all things considered for a 1.5 year old (WHAT, he’s 1.5?!?) he did really really good.
so what exactly does otto have? you can read the full diagnosis here but i’ll pick up after his first surgery. Otto has a few different things going on but our biggest hurdle now is the mitral valve regurgitation which means the valve is letting blood leak back in after pumping it out. unfortunately it’s a pretty tricky valve. we thought it was fixed after his first surgery but since he became hypertensive after surgery it just didn’t hold (read more here) so now we are watching to see how his body is tolerating the valve issue.
so far his body is tolerating it great. there is normal heart function, no enlargement or strain, no breathing issues.. basically he is a thriving (that’s right dr. used the word “thriving”) toddler. and for that we are so grateful.
there was a minor concern about his weight. it has not gone up in the past couple of months. there is a few other factors that most likely contributed to it (being sick, we just increased his calories etc) but that is also something they watch as a sign of heart function. if you’re heart is overworking you won’t keep weight on.
so why does otto have to go to all these other doctors?
otto sees four doctors and a two therapists. he sees neurodevelopment because they monitor every infant/child that experienced trauma in early life that might set them back in development. heart surgery – yea thats a trauma. he is a bit behind on some motor skills but cognitively.. the kid is just too much.
we see a physical therapist to work on those motor skills and so far he is moving right along.
he sees a speech therapist also to work on his food aversions. he developed these because when he was pre surgery he couldn’t keep up the strength to eat and everything that eating involves (suck swallow breath).. then he was in surgery and was fed via exclusive feeding tube after surgery for two weeks and by then it was aversions because he didn’t know how, he didn’t know hunger and he was scared of us putting things on his face. we are making such progress though thanks to the amazing staff at paper planes in grand rapids.
he also sees a nephrologist at the hospital team because he is on some pretty intense meds that could do a number on his liver and kidneys if not watched and dosed properly. he was born with some kidney issues but those have pretty much resolved themselves now.
so where does this leave us?
we have five months until our next appointment assuming he makes no noticeable changes to us. our doctor and teams strategy is not intervening until we have to. it could be five months, it could be five years we don’t know we are letting ottos body decide (and of course God). it will be interesting and anxious to see how his body keeps up as he becomes more mobile and active. sometimes that could put strain on the body and he could start to slow down which could mean surgery is drawing near or he could go on like he is and tolerate it just fine.
i’ve had a lot of people ask me how i don’t think about it every day. the truth is, i do to some degree but when it becomes too much i tell myself that “THAT day is not TODAY and today i’m going to enjoy my healthy nutty little boy”. i try to stay off google because i know what i already know. if that makes sense. My friend (and also who was one of our bad ass nurses in the NICU) shared this verse yesterday and how fitting as we were walking to our appointment. I actually read it while sitting in the parking garage.
1 Samuel 1:27-28 “I prayed for this child, and the Lord has granted me what I asked of him. So, now I give him to the Lord. For his whole life he will be given over to the Lord.”
and quiet frankly that is how we get through the scarys day after day. The Lord is good. the Lord loves Otto. and we have given it up to him the great physician. we are so grateful to have yet another holiday season safe at home. thank you everyone for your thoughts, prayers, questions, support and encouragement to our family. you keep us going. we are grateful.