guys we are making baby steps forward (pun intended). literally after having what i call $hit days friday and saturday otto slowly has been making a turn around for the better. and i type this with the apprehension that the decision for more surgery could happen with any step of a doctor that walks into our room.
i shaved my legs today for the first time in seven days, my hair has gone without “doing” for about the same time. each day i wake up, pump and put on make up thinking maybe the doctors take people more seriously when they at least look like they’ve tried? from there i go sit in the one of two chairs in ottos room and wait. wait for the doctors to all come in and check on him say good morning then we wait until our turn for rounds is here and the entire team (i’ve counted a max of 20 people) stand outside the door and discuss our otto. from there the plan for the day is made. good? bad? meds up? meds down? how’s his blood gas, blood pressure, breathing, bowel movements. my kid is discussed from head to toe which in some ways is kind of comforting.
yesterday was a very interesting day in the world of otto’s medical team. we had an incredible staff that broke it down for us what we need to do next. they have the infection under control and he is finishing the antibiotics for that in the next three days. they have his blood pressure stable so now it’s to figure out how to treat his breathing. he was suspected to have a softening of the airways because he labored so long with it and his heart was so big pre surgery. they did a scope yesterday down his nose with a camera the size of the NG tube that was in his mouth. they didn’t find any sort of blockage so the next thing is to see if that leaky valve is what is causing it (most likely). it’s causing fluid on the lungs and we might be able to solve that with medication. fingers crossed.
the ear nose and throat doctor was pretty cool and let me look through the camera (not while it was inside otto do you think i’m nuts!?) but it was cool to see how all of these tools work. literally a pin hole camera and i could hold it out and see joe’s entire face (of shock that i was allowed to be messing with this piece of equipment).
i was able to hold him yesterday but our visit was cut short by the ear nose and throat doc. i couldn’t have him back and will not be able to hold him again until he gets his lines out because while i was holding him we pulled is oral tube out (feeding tube through the mouth) and once one line goes they have to be more careful. hopefully that is not too much longer. it’s the worst not being able to pick up your baby whenever you want. personally though i am going to count that as a win that OG tube sucked and it drove him crazy (rightfully so) our amazing nurse yesterday figured out how to tape the NG so it didn’t interfere with the cpap.
last night they started weaning him off the cpap and he did awesome. the last time they tried that (friday?) he didn’t hold up too well. we have such high hopes.
they also took a “high def” echo (ultrasound) to his valve again. were hoping to hear more about that during rounds this morning. what if the valve got better? i’m scared to even type that into reality because honestly the chances are slim. but.. what if? or what if it does leak and it just doesn’t bother him and we get the time we need to have a more successful second surgery? i’m feeling pretty vulnerable putting this out there because there is a very good chance that we could get the surgery date again… but what if? i’ve been praying for a miracle since the day we found out about otto’s heart at 20 weeks and i don’t intend anytime soon to stop asking for one.
every night before going to bed (which is so hard to do, i want to rock my baby to sleep). i pray our prayer with otto “dear God bless this boy, heal his heart and make him better. Dear God heal him because i need him to be my little boy so I can be his mom. Dear God please give us a miracle. It never hurts to ask. amen”. after that i tell otto how good he did that day. and what he needs to do tonight. again it’s weird and uncomfortable at times to talk to a baby like this but i feel he needs to know. he needs to know even if he doesn’t understand the words but he can understand the emotion. i need him to be better. I then walk back to our nomad room and just pray, God let your will be done. I really sincerely hope it’s the same as my will but if it’s not please give me the strength to move forward.
we have been so overwhelmed with gratitude for all of the love and support you have given our sweet boy. the prayers are treasured as i believe God has been listening (and has listened all along). please keep them coming. there are honestly times when i walk the halls of this hospital and i feel my heart beginning to sink and my hopes beginning to fade that i will all of a sudden feel a physical change and i can keep going.
we will keep you all in the loop after rounds this morning.
thank you for loving our son,
abby, joe and otto.0