life after leaving the PICU is completely different from life after the NICU. for one were not learning so much as to how to take care of a newborn but how to take care of an infant who just had a major surgery and isn’t quite well yet. that is kind of scary. especially when things go wrong and you don’t have a nurse waiting right outside your door to help.
we arrived home around 4pm on wednesday afternoon and had an awesome night just relaxing and enjoying the comforts of home. it made it especially nice to come home to a sqeaky clean home thanks to my dear friend brenda who with the help of friends cleaned our house from top to bottom. it was such a warm welcome home. we settled in for the night and around 8:30 we started getting otto’s new medications ready. all 8 of them. it’s intense you guys. made even more intense by the fact that we were missing a major one. like the one that removes fluid from his lungs. it was missed at the pharmacy and now it was 9pm in allegan and we had no med. we called the on call doctor and we supplemented with a different med that he had but still… i didn’t sleep that night. i was so worried. not to mention poor otto woke up around 6am with the worst vomiting i’ve ever witnessed. to the point where he was dry heaving. it just felt awful and i felt like the walls were caving in a bit. but as the sun came up and the doctors told us what to keep an eye on things kind of calmed down. otto had a great day and we enjoyed being home.
we did our laundry and put away bags of stuff accumulated from weeks at the hospital. you take for granted things like being able to walk to the fridge and get something to drink. using your own bathroom and shower. to the people who have been at the hospital long term… you’re amazing.
it was so beautiful out and joe was working from home and otto snoozed i went outside for a bit to get some fresh air. i snipped a few dead flowers for seed heads and plan to get back out there again this week to at least salvage something from my deserted patch of weeds.
i just kind of started to tear up from it all and then morphed into a full out ugly cry. not knowing how long otto will be “good” , anxiously watching for signs of heart failure again, feeding tubes and pumps, piles of medication. it just all came falling down on me. and i’m not going to lie, i sat in my garden shed having a pitty party. mostly for myself selfishly. i asked God how much longer until we are normal again? when is our normal life going to start? when are we going to experience being normal parents with normal infant problems? when i pictured my life… this was not it.
i sat outside and just let all of the things you’re not supposed to say be said. and it felt good to get it out. and once the words had fallen things became a little more clear to me. what is normal? our life might never be normal? there is a possibility that this is our life now. we don’t know what the future holds so we better get used to it. i’m trying to be patient and wait to see how God uses all of this. surely this is not happening for nothing.
like i said i don’t believe God lets this stuff happen to “teach us a lesson” but i do think God uses situations like this to grow us, strengthen us and be an example. after i had collected myself my determination came back. i told myself from now on each new day is a day closer to results, health, a better life for otto. and you think you have it bad lady? otto is the one who threw up after having heart surgery two weeks ago. all you had to do was hold him and clean it up. who are we really sorry for here? i felt like a real jerk. even after all he’d been through that day/night otto still smiled and was such a happy baby all day. learn from him abby.
after that whole “episode” i went inside and just snuggled with otto making a grocery list for the week. joe went and picked a few things up and we made a shepherds pie and watched shark tank which we became absolutely addicted to in the hospital and went to bed early. otto ended up puking one more time but a quick phone call to the doctor assured us it was going to be ok and we just had to switch some things up.
friends, thank you so much for your encouragement throughout the day. this is scary and hard but it’s all still so beautiful. otto continues to defy his odds and the medicine seems to be working. my heart is so full of joy when i look at him and he smiles back at me with those huge blue eyes (don’t know where he got those). he makes me know “i got this mom…just make sure you are feeding me”.
and you know what i realize? this isn’t the life i signed up for. it’s just so much better.
thanks for letting my flesh out my thoughts this morning.0