we’ve officially been home sweet home now for over a week. and approaching otto’s third week of life on this planet. i feel like he’s been here so much longer than that but at the same time the last few weeks have been an absolute blur. i regularly have to check my calendar to see what day it is. this has been the most challenging, exhausting, rewarding time of my entire life. i’ve learned a lot about myself, my spouse and my faith in these three short weeks.
our weeks are (gratefully) filled with doctor and nurse appointments. we have an in home nurse that comes once a week for a wellness check and weight update and just a general checkup. we’ve had a few pediatrician appointments for the same thing (wellness check, breathing, weight, etc) , we have meetings with our pediatric cardiologist and nephrologist (kidneys to make sure meds are doing ok). all of these appointments can seem overwhelming but honestly i’m so grateful to have the reassurance of them. we haven’t gone a full week without a doctor checking him out and each time we stay the course or make an adjustment (like upping his amount of food intake). plus the doctor visits get us out of the house which is nice.
now that we are home and settling into a routine (if i’m being completely honest here) i have had to fight to stay positive. positivity comes easy when situations are new but as we go to doctor after doctor visit and my little man hasn’t been put on weight i fight to keep my brain in a positive space. it’s way too easy to be angry over why my baby has to fight so hard to breath and eat, why he has to have this stupid NG tube covering his sweet beautiful face, why was our baby born with a heart defect when millions of other babies are born perfectly healthy. these angry thoughts are a constant battle to keep at bay. i pray that we remain positive because we have to for otto. i truly believe that babies can sense anxiety and stress and for him (and our sanity) i try to combat those bad thoughts with the silver lining of it all.
for instance thank God that ng tubes exist. without them my little man would be too tired to eat and would for sure not gain any weight. that ng tube allows him to try and eat what he can before allowing him to rest and preserve energy and still have a full belly. plus i get to snuggle him close while we wait for the food to go down. when it’s late at night (or early in the morning) he snuggles into my arms and we pray together (i do most of the talking) that God make him big and strong, make him well and heal his heart. this face smothering booger causing nose tube just might be the thing that gets us big and strong enough for his heart surgery. and for that, i can be nothing but grateful.
i look at otto and his heavy breathing and i just will to take it away. if i could take it for myself i would. i get angry that my little man has to work so hard so early in his short life. that we have to be careful how much energy he uses, where he can go and how careful we have to be with germs and viruses. when i’m feeling like this i pray for strength and understanding. i am grateful for our amazing team of doctors who i know are going to fix this. i am grateful that we have a God who can heal and work miracles. i remind myself that we do not have time to be angry. we only have time to persevere, push forward and get to the solution.
i have learned a lot about my own faith. for a long time i’ve been living like i could do a lot of this myself. that all changed when we were experiencing our first miscarriage and i realized that this entire situation and life is not in my control. after our miscarriage i was angry but relied on God for healing and strength during that difficult time. I feel like we were brought to our knees again at otto’s 20 week appointment when we learned of his heart defect and we prayed and prayed for healing, strength, and the best case scenario. i feel like we kind of got that with his condition. nothing is worst case scenario, everything is labeled as “moderate” and the doctors have full confidence his surgery(s) will go well and Otto will live a healthy normal life. in the end God is the great physician and we are counting on him for the patience to get us to the surgery and the strength to get us through. i do feel guilty that it seems that i have turned to God harder in these situations but honestly sometimes its these situations that remind us why he is here. we need to trust and have faith.
finally and perhaps one of the greatest lessons i’ve learned so far in this journey is the power and strength of my spouse. for so long it’s been the joe and abby show and we’ve had nobody to be responsible for but ourselves and our relationship. i am amazed at Joe’s strength, optimism and wisdom with Otto. he has the ability to soak up what the doctors are saying and relaying it to me so i can understand. most of the time my mind at those appointments it’s just saying “no bad news no bad news” over and over. i’m grateful to him who doesn’t allow me to wallow in negativity, remain positive and take turns taking the late night feeding shift. it makes me feel that i’ve taken him for granted a lot and i’m seeing what makes him so amazing all over again.
so our journey continues. little otto had an appointment yesterday where he finally stopped losing weight and started just maintaining. we are upping the amount he eats at each feeding and then going in for a nurses visit/ weight check on friday to see if that helped. if it doesn’t we are probably going to have to start supplementing his milk so he gets more calories. there is always another thing to try and i’m grateful for that.
please keep our little otto in your prayers. though he be small, he is mighty and a fighter and we will get to exactly where we need to be in Otto and God’s perfect timing.