we finally busted out of the NICU on friday afternoon. it was an exhilarating, triumphant and terrifying experience all in one. on one hand we finally got to take our sweet otto man home and snuggle him and care for him with all of his own things. just to be home there is nothing like it. but on the other hand we left the care and protection of the constant watchful eyes of the amazing nurses and doctors. while we were there we had the teams come in every morning, cardiologist, neonatalogist, kidney doctor, food therapist etc. otto had his own little entourage that watched his every breath and it was so comforting. and now they just unhooked him from his bassinet there (i bawled) and just handed him over after signing some papers.
it was crazy to think that my little boy had been here a full 9 days and never left more than a 3 foot radius of his hospital bed. not really that he knew any different but just the idea of it broke my heart. while we were there we started out in the group nursery portion of the NICU. they didn’t think we would even be there a full day at first but they just kept finding little things with Otto that warranted a longer stay.
while we were there the reality of how sick our little boy is really started to set in. at first we were so confident that it would be a day or two because come on! the kid was 8lb 11oz, full term baby. what is he doing in the NICU. but thanks to all of the scans and reviews they found a few more issues with his heart and those are now on the agenda to fix as well. we are still hopeful for just one surgery but the main issue now is that mitral valve regurgitation (aka a leaky heart valve) that will be a bit tougher to correct than the avsd itself. however… this MVR has a chance to correct itself or improve with medication. Otto has been on a strict diet and feeding schedule to aid with his meds and hopefully make that issue better or as good as possible before it needs to be operated on. this MVR would be the cause for a second surgery.
to say i’m anxious is an understatement. my little man breathes so heavy, has amazing days and has slower days and i just catch myself weeping and praying for him to just be better. while doctor appointments provide a lot of comfort or information it gives me a lot of anxiety because i’m so scared of more bad news and so scared that surgery is closer than what we are hoping for.
i pray and pray and pray for healing for otto and a calm level head and FAITH for myself. that’s all we can really do other than listen to our doctors and stay the course. but i’m being totally honest here, this new mama’s heart is just a mess.
so many people have reached out saying they are praying for our sweet otto and checking in on him. i am so grateful. prayer is what will get us all through this. i am trying to savor these infant days but i long for the day where all of this is behind us.
thank you all again for your prayers. i will let you know how otto’s appointment goes today! pray for some meat on his bones!