otto update back to the cardiologist

yesterday we packed up our car and headed back to grand rapids to meet with our cardiologist for otto. our last appointment was two weeks ago and we had an ekg and an echo stat. yesterday we just had the ekg and a check up. this time otto was not as friendly with the nurse allowing her to put all the ekg stickers on him. lol he wiggled and cried and kept ripping them off and the first time he just laid there asleep. he’s getting a little feisty. i told him if he didn’t shape up no ice cream lol.

we finally got everything assembled on him and done and waited for our doctor. secretly (or not so secretly) i was hoping he would come in and be like ok here is what we saw! surgery will be ____! yea that didn’t happen. lol.

i posted on instagram yesterday that otto is like my little recipe. we are finding out what works for him. a little of this, a little of that. too much of that ruins this balance so we are taking this away etc. all of this is to find what works for our little man to get him to where he needs to be. we decided yesterday that he is just not gaining weight like he should be still. although he is gaining, it’s just not fast enough now. so to combat that we are going to fortify my breast milk with some extra calories so he’s still drinking the same amount (currently at capacity) but it will have more calories to it.

it’s crazy because breast milk has 20 calories an ounce and the fortifier will give it 24 calories an ounce. those extra 4 calories per ounce are hopefully going to make up for his rapid burn of calories and we can start to see an increase in him more than we have in the past. the reason he is burning so much is that his heart and breathing are working overtime and it just churns and burns right through them. i’m feeling confident that this is going to work for him. the increase in food made him stable and gain a little so hopefully this is the magic cure to make him grow even faster.

lately his little cough has gotten worse and we’ve seen an increase in his projectile puking combined with a really quiet cry. yea that is enough to freak a mama out. but the doctor thinks he’s dealing with some reflux issues because of the excess pumping of his heart so we are starting a new med for that today.

so now he’s on strict feedings every three hours and three different types of meds. to keep track of everything i set permanent alarms in my phone that tell me exactly what to do and when which has been super helpful because i’m just paranoid of missing a dosage.

our doctor explained to us yesterday that it’s only been a few weeks of monitoring otto. that we need to look at the longer picture in terms of months to see if things are working rather than day by day or even week by week. me? i want to know now what the plan is. i think this is the most ultimate test and lesson in patience that i have ever had to go through.

i’m a proactive person, i want to figure it out figure it out now, get to where we need to be and get this behind us like yesterday. but it’s not up to me. and there is nothing i can do other than follow the instructions to get us to where God and Otto decide it’s time.

thank you so much everyone for your thoughts and prayers. we really appreciate it. it’s been difficult but i’m so grateful for the positive projected outcomes the doctors have for our otter and that although they are small we are making strides forward.

Comments

  1. Jo Nelson says:

    Just a thought for you re all the medicine, etc. My husband had cancer 6 yr ago and was on a ton of stuff at all different times. I’m a spreadsheet lover, so I made one with the times across the top and the medicine down the side. Every time I gave him what he needed I checked it off. I love phone alarms, and I would keep them, but with a pencil and paper spreadsheet, it was helpful to me to just be able to look at it. Otto is absolutely adorable, and it sounds like you are doing a fantastic job with him. It’s hard, isn’t it, when you have to do things like this which are totally out of your comfort zone. But look what a great job you are doing. It will eventually get easier, you will see.

  2. Hi Abby! I think I recognize you from the pediatric congenital heart page? Anyway I wanted to tell you a couple things that have worked well for us with my son Judah’s three year old history. Phone alarms for Med times is one which you’re already doing so, AWESOME! Also – there’s an app called CareZone (has an owl in the icon) where you can track all medications, how often they need to be refilled and even weight and height info from appointments. Oh! And you can track Otto’s O2 numbers which helps a lot down the road because the app can put it all into a nice graph for reference. For Judah’s heart catheterization in June I was able to print off his medication list thru the app so his check in nurse could update their system super easy.

    • That is amazing! Thank you so much for sharing. I am totally downloading that app! It would be nice to keep that info on hand because I leave and go… wait what was the ounces again?

      How is little Judah doing?

Speak Your Mind

*