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.
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.”
(Of course I’m just posting this. So, the date this was written was a bit ago and the dates we were in the ER were August 2nd and July 26th)
Thankfully, we were not in the ER today. But, we spent time there twice within the last two weeks, one week apart exactly. Why? You ask? Because Isabellas Gtube keeps falling out!
For me, blogging has been very therapeutic and helps me get my thoughts organized. Having a daughter with numerous health issues is overwhelming. One of the things I found when we lived in the NICU is that there are lots of resources about preemies but not many about G tube’s. So, I decided to begin blogging about her G-tube journey so that other moms might find it useful. This is also a great way to keep family and friends updated.
The Dreaded Day Bella’s Feeding Tube Fell Out
Bella has a G-tube and we were trained on it in the NICU. I felt pretty confident about things except for replacing the button at home. I knew it would just take some getting used to. But I’m quite squeamish and looking into a hole in your baby’s stomach can certainly freak you out. We’ve become quite comfortable with this little button. We do hook up to feeds eight times a day. So, when her feeding tube did fall out we were prepared.
It was during her for 4:30pm feed. I noticed Isabellas button looked loose. We were going to vent her which basically means let air out of her belly. She was crying and the button was being pushed out. This is pretty normal so I didn’t think much of it. When she cries the pressure in her stomach can push the button out. It’s not really something to be scared about. I mentioned it to Dustin who was with me. He didn’t think it was anything to worry about and continued hooking her extension to the button. I thought maybe I was being overdramatic and looked away for a second while he hooked her up. Before I knew it I heard him yelp and I looked down and the extension was attached to the button and the button was completely out of her stomach.
I looked down and saw the hole and immediately remembered what to do. Dustin ran and grabbed the emergency kit while I held pressure on the stoma (medical term for hole). Luckily Isabella hadn’t eaten for awhile so the stomach contents weren’t pouring out. She was unhappy but didn’t seem to be in pain. There was a little blood from her granulation tissue but nothing crazy.
Bella sleeps on the way up to Akron. You can see the catheter hanging out on her side.
Dustin came in with the emergency kit in his hand. We prepare emergency kits with catheters in them in case the button falls out. It is a short-term fix to keep the hole open until we get to a surgeon who will replace it in the emergency department. Eventually we can switch out the button ourselves but since the hole is still healing, our surgeon instructed us to bring her to the emergency department at Akron Children’s Hospital. He told us the hole could close within 30 minutes and that it would be painful for them to reopen it. So there certainly is urgency in getting something in the hole to keep it open. There are only three people who are supposed to be able to change the button, Dr Pittinger his partner, Dr. Andrews, or their surgical resident.
Dustin took the catheter and put a small amount of lube on the ends and inserted it into her hole then using a syringe we filled the end, which is like a balloon, with a measured amount of water to hold it in place. Once we made sure the amount of water was correctly in, I taped gauze around it and attached it to Isabellas shirt to keep it from pulling out.
Dustin ran downstairs to our office in the basement, (he works from home) and told his coworkers he would have to leave for the day. We are really lucky this happened near the end of the night so he didn’t have to miss a lot of work. We packed everything we needed to drive Akron Children’s Emergency Department which is an hour and a half away. I made sure we had formula, extra syringes, extra extensions, and all her medications.
Waiting for a short minute in the ER
We placed her in her carseat and used a button down to pull the extension out and lay it gently beside her. The ride to Akron was pretty uneventful and she actually slept away. She was getting hungry because she didn’t get her feed. She doesn’t take anything by mouth so if her G-tube is out we can’t give her food or her medications. We called family and I also contacted a friend who is bringing us dinner. We told her to still bring it and Dustin’s parents would pick it up and put it in the house for us. They were already planning on being over because they have been mowing our lawn for us! On the way I called the Emergency Department and told them about Isabella and they contacted Dr Pittinger and his surgical resident. We explained Isabella was medically fragile and they said they would be ready for us when we arrived.
A diagram of what the button looks like in place and how the button sits under the skin. Photo Credit: University of Iowa Stead Family’s Hospital, https://uichildrens.org/health-library/gastrostomy-button-g-button
What Isabella’s button looks like outside of her stomach. Photo Credit: Newcastle Hospitals http://www.newcastle-hospitals.org.uk/services/childrens_health-information_low-profile-balloon-gastrostomy-device-mini-button.aspx
Why’d It Fall Out?
The feeding button fell out because the balloon holding it inside of Bella’s tummy deflated. This can happen if the button is old, punctured, or if the water is evaporating. To be honest we’re not sure why Bella’s button deflated completely. We asked the surgeon and they don’t know either. This was frustrating, but we were happy to know she had a new button in.
***warning graphic photographs, not for the squeamish***
Best Emergency Department Visit Ever
It’s strange going back to Akron Children’s Emergency Department because we lived in the same building for over 100 days. The NICU is on the sixth and seventh floor. When we staying in Isabellas room up there, I remember countless hours staring out at the city and listening to the ambulances go in and out from the Emergency Department. We knew the area like the back of her hand. We walked into the Emergency Department and as soon as we said her name we were ushered back quickly into a room where they did an intake on Bella. Then they took us to a private room and the surgeon walked in with in six minutes. They ordered as a new button change kit, even though we had our own (which saved time). It was nice that they moved so urgently.
Isabella lays on the hospital bed, waiting with the catheter in for her button to be replaced. You can see the red marks where the tape was pulled off. Here she has her catheter in.
All the while, Bella was getting pretty hungry. The resident walked in, sterilized, gloved up, asked a few questions and began assessing Bella. He asked if we wanted to put it back in, but we said no. I felt it was too far away from the official “heal” date of August 22nd. I also felt that if there was something wrong he would be able to tell. Within a few quick minutes he pulled the catheter out and inserted the new MiniOne button. Bella cried a bit when he accidentally tugged on the catheter, not realizing it was inflated inside her stomach (rolls eyes).
It was a quick quick thing. The button is inserted and then filled with water to keep it in place inside her stomach. You have to measure the water correctly so that you know how much is inflated inside of her. For Bella, her balloon takes 2.5mls. After awhile you memorize it and know to check it to make sure it has the right amount. Isabella doesn’t seem to be in pain during the change and was just annoyed someone was bugging her and hungry. As soon as we go the new button in, the surgeon made sure it the placement was correct by pushing fluid in and taking it out of the tubing.
Up close look at Bella’s stoma (medical term for hole). You can see the fluid and granulation tissue.
We were able to stay in the private room to feed Bella. To feed her on the go, or in this case, an emergency, we put her speciality formula into a 60ml syringe and attach it to her extension cord. We then push the formula into her stomach slowly. She doesn’t tolerate this well and usually throws up. Unfortunately I didn’t have time to fully pack the pump.
A quick fix! This is the surgeon inserting the new button.
They Know Us
We were exhausted. We ran out of the house in a rush and were hitting the wall. We were so glad the ER visit took so little time and we were home before 9:00pm, but we were hungry. We walked in and saw a gift bag for us. Our friends Molly and Anthony Pingitore and their precious girls had prepared us dinner. We had a delicious chicken casserole, salad, cookie dough and green beans! While we prepared to feed Bella again we opened the sweetest card from them. Dustin and I both tried to hold back tears. It said lovely things and also had gifts for us. A gift card to Sephora for me and a gift card to Chipotle for Dustin.
Bella sleeping after her button is changed.
We fell into the couch after sanitizing and digged into a delicious meal. We both prayed out loud over Bella and our family. I know Molly and Anthony provided these things but I just felt the biggest hug from God himself. Not only did he provide the necessities (dinner), he provided chocolate chip cookie dough (we each grabbed some raw) AND a special gift for each of us. This was a very thoughtful gift since money’s rather tight and I don’t just go shopping for makeup. My foundation was running low and I wanted a new lipstick for my friends wedding. God used Molly to provide such a fun “extra” gift. That’s what I love about our Jesus. He cares about the little details that make us US. Thank you Molly and Anthony for allowing the Holy Spirit to work through you and for being so generous.
Special gifts from friends.
The rest of the week we also received some amazing meals and gifts from others too! God’s awesome.
Anyway, as soon as we took a sigh of relief, and things felt “in control” a week later to the day her button fell out again and we did the trip/process all over again. This time, though, we got some good information and (spoiler) approval to change the button out at home from now on! See Part 2!
