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Isabella

27 Weeker Micropreemie Photoshoot!

9 / 15 / 18

 

Our first family portrait

One of the greatest gifts we’ve received are professional photographs taken in the NICU. These were taken while Bella was only 14 days old. I remember signing up so excitedly on the paper sign up sheet in the family lounge and then crying when I realized she would have her cpap (breathing help/mask thing) on. I walked back up and began crossing our names off the list. But Dustin looked at me and said “Tiffany, we want these pictures. We have nothing to be embarrassed about. This is her right now. This is her journey.” It’s true! I’m so glad we didn’t wait until she looked “ideal” to take these photos. This was us. This was her. This was our reality.

But of course I struggled when I looked down at her and the photographer walked into the room. I even asked the nurses if we could sneak the cpap off for a few photos. (So silly of me). I was still very much overwhelmed and in a lot of pain from my emergency c-section. I was also pumping like crazy, living in a Neonatal Intensive Care Unit, taking pain killers, taking blood pressure medication, and trying to be a mom. It was one of the hardest times of my life yet it was filled with so much peace and joy. I believe that this is reflected in these photos.

To be honest, I almost didn’t want anyone to see these. Bella looks…scary. Kind of like an animal. She doesn’t really look like the cuddly baby you imagine or see in pictures. BUT we loved her all the same and I held onto hope that she would grow and develop into a beautiful little one…and God didn’t put that hope to shame!

Looking back, I carefully curated things I shared with the world. Dustin and I always wanted the way we presented our story to be a story of hope and love. We wanted Bella to be able to look back and be proud of how we shared her journey. I believe we have been good stewards of this. Some questioned early on…including us…if we should share so transparently about our journey. I know it’s not for everyone…and not everyone is called to it…but we felt we were called by the Lord to share Isabella with everyone in a public way.

From the day years ago that God told me I’d have a daughter and to name her Isabella Melody we’ve known she would be used greatly in His Kingdom.

So, I share these photographs to inspire others and give them a HOPE. You probably are looking up viability of a 27 weeker or maybe you are in the NICU and hope your baby will look a bit different as the month go on. (They will).

Isabella was born at 27 weeks but only weighed 1 lb 7 ounces due to restricted growth. I had an emergency cesarean that I was put under for since I had severe preeclampsia and stage 2 HELLP Syndrome that threatened my life.

If you notice the shock and awe of this image…it’s because this was the very first time I held Bella cradled in my arms and without doing skin to skin! For 14 days I had only held her chest to chest and while doing kangaroo care (skin to skin).

Look at those tiny hands!

As the days passed her coloring got better, she grew, and medical devices and medications were slowly taken away. Now, she is 6 months old and doing great. She has a feeding tube due to silent aspiration but other than that she is a healthy, happy baby.

If you look closely you can see the strange white hair that covered her entire little body. This is called lanugo and went away after awhile. She was very fragile at this time to we used help getting her out of the isolette and she wasn’t moved around too much.

I’ll have to post more about this information, but she doesn’t have clothing on because she was in a controlled warm isolette and she needed to be seen by nurses/doctors. As she grew she could wear clothing…around 1 month or so.

I want to thank Simon Says Smile for this amazing gift to us. This is a volunteer program offered through Black Dog Photo Co. They came and did this photo shoot free of charge. (AND later helped us when we accidentally overrode these pictures). AMAZING people.

Lastly, we had another amazing photo shoot done by Teresa Young. She also gifted these amazing photos to us. This was a very emotional moment as I had dreamed of some “normal” looking images of my tribe. Here’s a little teaser and I’ll post the rest another time.

Curious about her birthmark on her scalp? It’s called a hemangioma. It’s a superficial birth mark. Learn more from this post.

This little princess is wise beyond her years. 6 months, about 9 1/2lbs in this image. Adjusted age is 3 months.

Love & Laughter,

Tiff

 

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Sometimes God Speaks From A Starbucks Cup.

9 / 13 / 189 / 13 / 18
My set up for the day.

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.”

God’s words on a coffee cup

I hear you Lord. We’re all ears ?

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Living Over 100 Days in the NICU

8 / 10 / 18

It seems like just yesterday that we left the NICU at Akron Children’s Hospital. I have very many mixed memories of that place. Some of the scariest times of my life happened behind those walls and some of the happiest.

In the midst of a dark time we did our best to make the NICU home. Years ago I bought an art print that says, “Home is wherever I’m with you.” (Yes, it was bought from Urban Outfitters and Edward Sharpe and the Magnetic Zeros were popular…ok now listening to them on repeat).

Since our marriage, Dustin and I have moved six times. It’s funny to add “NICU” to that list. We spent most nights there but spent 17 at Ronald McDonald House and once a week at home to rest up. I plan on writing a lot more about making the NICU home and our experiences there. In the meantime, enjoy this video I took near the end of our stay. You can tell Bella is much more stable and is even in an open cot!

XOXO

Tiff

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