it’s been a while since i gave a full otto update. and to be honest it’s because things have been so good. we have received countless good news after good news that it’s easy to just celebrate and move on. which is so wrong because i don’t want to just share the dark. because right now the light is just driving it right out.
to the untrained eye otto is a healthy “normal” functioning little boy. he gets booboos, he talks in gibberish, he is stubborn, smiley and still scoots around. he is absolutely thriving at his day care school. from where he is to where he “should be” we have received countless blessing after blessing. i will try to break down the areas and give the updates as best as i can.
how is his overall health? right now his overall health is great. he still has heart issues but they are being stabilized with three different medications that he receives three times a day. it sounds intense but it’s just been such a part of our every day that we don’t even notice it (until we accidentally leave a bottle at home). two of the medications are a diuretic to take fluid and pressure off his lungs (because of his mitral valve regurgitation) and the third is for his blood pressure. he has had several colds and bugs over this winter season and has tolerated them like any other child would. we had one or two ER visits but it was for fear of dehydration and meds but all turned out fine. he receives his regular vaccinations as well as a synegis (most likely spelled that wrong) vaccine that helps protect at risk children from RSV. This will most likely be his last season needing that shot.
how are his nephrology appointments going? awesome. we actually just had our last one last week and do not have to go back for an update until next year (unless they have a major medicine change). he had kidney stones from one of his medications but they just seemed to go away (which is a miracle). he was also born with a condition called congenital hydronephrosis. they monitored it and had to watch his kidneys for a while but that issue has resolved itself too. praise be to God for one less issue and one less appointment.
what is his motor skill development update? because otto didn’t spend enough time on his tummy due to open heart surgery early on as well as just having open heart surgery in general set him back motor function wise. but as you can see otto figures things out his own way. because he didn’t follow the roll, crawl, walk progression we needed a bit of an intervention. he was monitored by neuro dev (they follow all kids who have had early trauma) and had an at home care giver for a while. she and a program called early on were wonderful but i just wasn’t seeing any progress so we decided to go to a new private practice (the same one as we go to for his speech/feed). there we learned to finally crawl, stand and now take steps. otto is officially caught up with his age group. we were never super worried, he’s a smart kid but it was more of a proactive measure.
how is food therapy going? food therapy. other than the heart journey the longest one we’ve been on so far. the reason otto isn’t eating has nothing to do with physical capabilities. it’s all mental. when he was born his little heart had to work so hard that he could not get the suck, swallow, breath rhythm. because of that he spit up a lot and had to leave the NICU with an NG feeding tube. (NG = Goes through the nose and into the stomach). it isn’t painful but it is uncomfortable. However… it kept him alive. without it he could not get enough calories down and would burn almost as much as he ate working so hard. every two weeks we had to change the NG tube. I still have nightmares about it but as i just told another mom going through the same thing.. you do it because it is what is keeping your child alive. that did not help our efforts with him getting to eat on his own. he soon began to associate hands on his face with either someone cramming food down his throat or putting a tube and tape on his face. he had his open heart surgery at two months and then that pushed things back even further. he was tube fed for over 3 weeks while in recovery.
otto though has always given me a reason to hope. the first bottle he was allowed to have after surgery, he drank like a champ. like he’s never done that before. it was a miracle. it never happened again but it gave me hope that he could if he wanted to. shortly after that he had a swallow study done to make sure that it wasn’t anything else causing him not to eat. and it came back great. no issues just aversion.
we had an at home nurse visit twice a week but again I just wasn’t seeing progress. we decided to switch to paper planes therapy in grand rapids and we have been making slow and steady progress ever since. we worked really hard on getting past just the aversion to things on his face. we did all sorts of exercises daily to get to that point. then slowly he started putting toys in his mouth. then one day another glimmer of hope, he grabbed a veggie straw out of the bag and just ate it. and then didn’t do that again for almost a year.
at about 7 months otto was finally given a g tube. this was a semi- permanent option that took the pressure off of his face and it goes right to his tummy. it’s a tiny button about the size of a thumbnail. he now has his face free to try things and the g tube change takes place about every 3 months and he doesn’t even know i’m doing it. if you are a parent of a child contemplating g tube placement, i can’t say enough good things about it. that paired with therapy and day care has been an absolute game changer.
after the toys we slowly were able to introduce purees and he was eating purees like crazy until he got his first big cold and then just stopped cold turkey. we have not been able to get him to try puree since. however after that he slowly started putting veggie straws in his mouth and licking them and then a bunch of other things he started just tasting but no bites or swallowing.
one day he finally just started biting and spitting food out and then slowly started chewing. i credit a lot of this to monkey see monkey do at day care. he will eat and do things at daycare in the presence of other kids that he never does at home. just recently he has started chewing and swallowing certain things. that is where we are for now. we go to therapy once a week and continue to work hard. we will get there though!
read more about Ottos food aversion here.
how is his heart? is he going to need another surgery? right now his heart is still a technical mess but otto is tolerating it and that is the most important thing. in his first heart surgery they attempted to repair his mitral valve and then also the AVSD (hole in the heart). they had a successful repair of the hole but the stitches in the mitral valve tissue did not hold. he was supposed to have an emergency second surgery but just kept getting better. and now they monitor him every 4 – 5 months to see if there is any change or enlargement to the size of his heart. If his heart starts to enlarge that is an indicator of heart failure and a surgery will be schedule for another repair and/or replacement of his mitral valve. but so far we are cruising right along. the more time we get until his next surgery the more medical advances are made in valve repairs and replacements. read more about otto’s heart journey here.
how am i doing with this? honestly… really good. there are days where I completely forget that he has medical needs. everything “not normal” has become such a regular part of my day (meds/g tube feeds etc). there are things though that have changed me. i can’t watch medical shows anymore. dramatic or comical. they are just bad triggers for me and I just can’t do it anymore. i also get fairly frequent nightmares about needing another surgery. earlier this week i couldn’t get out of my head how it went last time and what it would be like to go through it again with a toddler. i almost have to allow myself to go down that rabbit hole to just get it out. what it would be like pre surgery, keeping a game face, the see you later doors. it is truly the stuff nightmares are made of. if you are a parent who is in this with a child facing multiple surgeries, you have my heart and prayers. it is something no parent let alone their child should have to worry about as part of parenthood and childhood. but sometimes it is just our ugly reality. it usually gets worse the closer we get to a heart check up. i am so hopeful that we will continue to receive these miracles but i’m also scared to hang on that hope. i do not want to be blindsided so i always keep one food on the edge. and i used to feel really guilty about that. i used to feel that by not giving in to completely to hope that i was rejecting the opportunity for God to work a miracle. but the deeper I dive the more i just don’t believe that. I serve a rational God that created human and knows human nature. while i do give otto’s health and future completely over to him, I feel like God understands my deep love for otto and knows I have to stay on top of the game of whatever comes next. sorry if that is rambling but i have just had this on my heart for a while.
so now what? well we continue on until we are told we need an intervention. I pray constantly that we continue on forever. but if that isn’t the case then we address the issues and fix it. thank you all so much for caring so much for otto and his journey and to ask for an update. We greatly appreciate all of the support and prayers you life up our family with. thank you for everything.