reflux

It’s easy to curate a perfect image of your life using social media. Heck, since the beginning of time people have been wearing masks and making their lives look better than they really are. I think of the 50s housewife perfectly coiffed with dinner on the table.

BUT there’s a revolution happening. Freedom from having it all together. Women supporting women. Moms admitting that they’re flying by the seat of their pants. It’s empowering and…helps us feel a little less alone in this life.

So…let me take a moment and a pause from the super cute pictures of Bella (that I go through and delete the blurry ones) and the fun updates that include emojis. These things reflect the real me. They’re the real Bella. But they aren’t always the nitty gritty realness that’s born from confidence and courage. So let me share more into our story, Because YOU reach out to me. You tell me this inspires you.

Doing what we do best…netflix & tube feed!

I’m not sure I ever set out to inspire anyone by our story. To be honest I was just looking for friends…someone else who was up at 3am in a hospital room in a new, unknown city…wincing in pain from a major surgery but wanting to focus energy on a 1 1/2lb baby laying under bilirubin lights. What I know is through this sharing I’ve connected with others in a unique way and I’m so thankful for it. So I’ll always be honest with you. I’ll always be positive and confident in the hope of Christ but I’ll always keep things real. So let me begin…

This picture was taken a week or so ago. Yes, that is projectile vomit on the floor of our bedroom. How it goes that far? I don’t know.

The last 2 days have sucked. I’ve ugly cried more than I have in weeks. I’ve said hurtful things to Dustin. I’ve been angry at myself. My head hurts and I’m exhausted. I’m also on my period which intensifies all of this and makes me feel like a sack of potatoes.

Numerous things have made me feel this way. We found out we have a larger minimum on a huge bill from my hospitalization that we need to move around finances to afford. Last night we realized we accidentally overrode the pictures from our NICU photo shoot (Update: They Have Been Restored!!!!!)

Due to frustrations and frantically trying to locate the pictures we didn’t get to sleep until 2am…so I did the 3-5 and 7-9 shift so Dustin could rest. Today I got calls from the hospital that I mailed in the wrong part of Bella’s medical device for her ph probe, I was on the phone for over 30min fixing a billing issue with our insurance, and I learned our formula is still needing paperwork done before getting mailed to us.

Late night feeds can be fun…when we’re not exhausted!

Bella’s gtube is leaking and she’s teething. After beginning her feed this morning I tried to give her meds and the liquid sprayed all over my face and her. She ended up vomiting her whole feed down my chest and hers. I laid in dried vomit for 2hrs so she could rest on my chest with a blanket between us topless after taking my vomit soaked shirt off. My hair’s greasy and my legs are all kinds of hairy (TMI?).

Bella smells like spit up even though we just gave her a bath and her pump has been malfunctioning, throwing us off schedule. My floors are sticky from dripped formula from the pump/pump bags but I don’t have the time to mop them. I’m caught up on laundry but Dustin and I argued last night and said hurtful things because we were sleep deprived and sad over losing the pictures. All in all I feel like a mess.

BUT …

Gods been speaking to me in the midst of the crazy. He tells me I’m his and he loves Bella and I and Dustin. He says loves worth fighting for and saying I’m sorry is hard but so worth it. Serving each other. Sharing Oreos and pouring coffee keeps us going. Smiling over Bella’s new way she grabs her toes or tries to giggle warms my heart and helps me know this is all worth it. Money will be tight but Gods got all the money in the world and I just need to be still. I try to be childlike in motherhood. I try to rely on the Spirit to guide me. I try to be playful. I try to take one moment at a time. I throw my hands up a lot. I don’t have many answers. All I know is where I end God begins and He’s caring for us.

How is Bella cute even when she just threw up? Also, I love this shirt. Everything is better when we’re together baby doll.

So today was hard.

Then I got a text from a friend. We’ve been using honest company diapers. They work the best for Bella. She has sensitive skin and they’re the best fit. But they’re pricey. There’s been 3+ friends who said they have them on sale at TJ Maxx. Last time I ran out after Dustin got off work to watch Bella but size 1s were all gone. Today a friend texted me a picture and told me they were there and they’re thinking of us and love us. How thoughtful! In that moment I felt as if God had created this wonderful village around us..even though 99% haven’t met Bella in person.

But then God took it to another level.

This lovely person texted me there were gifts on our porch for us. I was tethered to Bella and couldn’t stop her feed/hold so I waited until Dustin came up to retrieve the items. He explained excitedly as he brought in lots of honest co diapers all in Bella’s size. There was also a Starbucks coffee for me!!! I have been trying to save money so I do cut back on Starbucks or other items…I drink coffee at home (somehow there’s always room in the budget for ice cream though lol) so this was a real treat!!! We both took turns sipping the chocolatey caffeine goodness.

But before then Dustin read a hand written message on the cup out loud in our living room. I believe strongly in the power of our words. Our words give life. Our words are so important. To hear Dustin deliver this message over our family brought me to tears.

In the midst of a hard day, from the handwriting of a special friend, on a coffee cup, Dustin read over the clanking of the feeding pump

“may God fill this day with wonder, joy, and assurance of his presence.”

I hear you Lord. We’re all ears ?

The First Plan To Treat Reflux

Lately she’s been spitting a lot after almost every feed and cries out in pain. We’ve known she has reflux, but were advised against treating it since she was doing OK and not spitting much…until more recently. After last week meeting with Speech Therapy and Nutrition, they noted she was hoarse and her esophagus could be getting burned so we should begin treating it. We got in the same day with our Pediatrician and began Zantac. We also ordered a pump for her gtube feeds, hoping that would help. Since then things have gotten worse. The Zantac made her struggle to go number two and seemed to increase the spitting. We stopped it and made an appointment for Friday.

Where We’re At Today

We didn’t know it would get to the point where she’s spitting up almost her entire feed and crying/screaming out in pain while being fed through her tube. She shows all the classic signs of reflux. The formula comes up through her nose, she burps it up, and she is coughing a lot. This afternoon I couldn’t bring myself to continue her feed because she was in agony. I’d stop it and restart it. She has to eat! She’s been labeled as Failure to Thrive once before so this is very scary for us. I called right away and got an appointment this afternoon. Sadly, she had only gained about one ounce since July 11th (6 days ago) and she’s supposed to be gaining an ounce per day. We strategized and decided to try Prilosec and Neosure Alimentum, a specific formula that may help. (In the NICU we tried this formula for a few days but saw no progress). Since we’ve been home tonight she’s only had a slight spit, slept through one feed with minimal crying, and cried through the other feed. It’s improvement. I’ll take it.

Why Is She Getting Worse?

We aren’t 100% sure why her reflux has taken such a dramatic turn but we have a few ideas. 1.) When she had her gtube surgery her stomach was moved. The Neonatologist had warned us this could cause reflux since the position of the stomach is different. 2.) Babies can “grow” into reflux. I’m not sure why, but it’s something that you see between 3-5 months we were told.

Why Is This Such A Scary Thing?

Isabella was a micropreemie and needs to grow. She is less than 1% in weight than the rest of those her age. Refusing to eat caused her to be readmitted into the NICU for another month. We later learned she silently aspirates (liquid goes into her lungs) when she eats. This has caused her to be extremely averted to bottles and most things orally. With her spitting up, we are concerned she could be aspirating that liquid. We have no way of knowing if it’s going into her lungs. Without keeping her formula down she could also lose weight, which is super scary for a baby already in the less than 1% for weight. This could lead her to be readmitted to the hospital.

Please pray that she stops spitting and begins tolerating feeds and isn’t in pain.

When It Rains It Pours

On top of the reflux, which was the most critical issue we were facing today, Isabella’s hemangioma (birthmark on her scalp) began to show signs of ulceration (skin breakdown). I had noticed a few dark spots and after some research learned that the large blood vessel filled mark could ulcerate and breakdown. It can also get infected. I sent off some images to our pediatric dermatologist and he called back, confirming it was beginning to ulcerate. We were given the option of taking her to Akron tomorrow but we felt it was best to wait a few days since she’d been through so much and we are beginning a new formula and medicine today.

He said that was OK and ordered a topical antibiotic to apply. We aren’t to use our fingers but a Qtip. Well, I kiss her all over her head and stoke her head and most certainly touch it, so I’ll need to be more careful and use more sanitizer.

We are also going to be treating the birthmark with medicine to make it shrink. 2 months ago we met with him and decided against treating it since it seemed as if it would go down and she only had one. It was only cosmetic and that was confirmed with an MRI. Now, she has 3 more and there’s concern for internal ones. So, for our next appointment we will begin a blood pressure medication to shrink it and the others. She will also have a liver ultrasound to rule out any internal ones.

My heart is super sad, but thankful we have access to medical professionals. Our dads both came over and brought goodies. Doug brought homemade pie, veggies from his garden, and chocolate zucchini bread. My dad ordered us Papa Johns, enough for tonight and tomorrow. They held Bella while I tried to get a grip on everything. Tomorrow we meet with Help Me Grow at home for her assessment for physical therapy and pediatric development. I’m praying it’s a better day and she’s not in pain.

Thank you all for following our journey and loving us well. Please pray tonight goes well.

XOXO Tiff

Sometimes God Speaks From A Starbucks Cup.