When Times Get Rough…Finding Clarity Through Writing In My Basement

How could you walk away from that face for even a minute?

It’s 10:01pm here. I’m in the basement. I’m in our office writing on my computer.

As a busy new mom to a baby girl I should probably be showering or sleeping or brushing my teeth or working out…but I’m writing.

I get an itch. An itch to write my thoughts and feelings and get them out of my head.

It’s therapeutic and one of the things I credit for me sanity these days.

Times Are Rough

…oh, but they’re so rewarding and full of joy.

My Body Is Tired

…but I’ve never felt so alive.

My Head Hurts

…but I continue to strive to show kindness, empathy, compassion, and encouragement to my family.

I Feel Weak

…but I’ve never felt so strong (and dare I say brave?)

Right now I’m listening to the “Teen Party” mix on Spotify. I’m drinking out of a bright yellow cup. I threw on my floral matching pajamas. I wholeheartedly believe that what I surround myself makes a difference in my attitude and outlook on life. Bring on the bright colors. Bring on the fun teen beats.

How I give medication into her feeding tube

Isabella’s Reflux

Isabella had a pretty good day. She’s adjusting to her new formula which is Alimentum and medication for her severe reflux. We had an appointment yesterday and she has gained an ounce a day since our last emergency appointment! This is very encouraging. We were referred to a GI specialist. That will be our next step in treating her stomach issues (Click here to learn more about why she’s having issues). She is still coughing, choking, and gagging, but she is doing it less. She still spits but not at every feed. We feel the prayers and God has been leading us to solutions. Praise Him! 

Isabella’s Hemangioma

It’s looking worse, but we are going to Akron Children’s on Monday. Her pediatric dermatologist was amazing and called us today and ordered the new medication so that we could begin treatment on Monday. We will pick it up and bring it to his office with us. This is very nice because we were only going to go over her liver ultrasound results and talk about her care plan. We typically would have to come back to have him give her the first dose and monitor her.

Since we live an hour and twenty minutes away and have a bunch of other appointments, he offered to begin it on Monday. She will be given propranolol at his office and will stay there for an hour and a half to two hours to be monitored. After that we will come back a week later to adjust the dosage. From there we only need to see him once a month to adjust the dose based on her weight. I’m relieved she doesn’t need to be admitted. I’m also relieved we won’t need to travel to Akron every week! This medication will work to shrink blood vessels and will assist in shrinking her hemangioma, which is a vascular birthmark on her head. We hadn’t originally wanted to treat it, since it was only cosmetic, but as time went on it became a health concern. Click here to learn more about it and why we’re treating it!

So Many Other Things, So Little Time

There are so many other things to write about and update. Bella is fed every 3 hours and Dustin and I take shifts. Her feed is hung by gravity currently and drips like an IV into her tummy. It takes about 50 minutes for 65ml to go in. We hold her during her feed. Then we have to continue holding her in an upright position. This takes a lot of time! It’s also a great time to bond with our cute lil one. We love cuddling. She typically falls asleep during her feeds. With her on my chest I browse Pinterest, Facebook, read blogs, and research things regarding her health. I see it’s almost time for her to eat again so I must run up to assist Dustin in her care.





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