akronchildrenshospital

Family Photo Shoot! 6 Months Micropreemie

It’s Saturday and Dustin is feeding Bella. I snuck away to write a few quick words on here!

I’m so so happy to share these amazing family photographs with you. As I mentioned in my blog post before, having photos done in the NICU was amazing and special…but I dreamed of family photos outside of the hospital walls! Oh…and having Bella unhooked from all the wires!

I’ll note that in these pictures she’s about 6 months old. The ones from the NICU were taken when she was 14 days old.

Teresa Young of Teresa Young Photography made this dream a reality and came to our home to take photographs of us in our backyard. She was so incredibly flexible. In fact, the day we had scheduled for her to take our photos, Bella’s feeding tube fell out and we had to head to Akron, an hour and a half away. We had to cancel!

So we rescheduled. She came over and was so kind and amazing. She even went for hand sanitizer before I awkwardly needed to ask! (Loving acts that speak to a preemie momma’s soul!) It was so nice to have her meet Bella, since I don’t get to share her with many people. We waited until the last minute to put our coordinated outfits on for fear of Bella vomiting on all of them. This was a great decision since she did in fact throw up all over herself and Dustin right before Teresa walked in the door!

I stressed so much about everything looking “perfect.” In the end I was just thankful that we were alive. And here. And able to take photos. I even considered paying someone to paint our fence (it only got one coat last season)…but that was silly and Teresa assured me she could make the photos look nice in our less-than-perfect backyard. She was right!

Bella was nervous. She really hasn’t been outside much and it was her very first time on a blanket in the grass! It was very humid and I was sweating buckets. My makeup was sweating off! BUT…Teresa did such a great job that when I see these…my eyes don’t immediately go to the imperfections…but to the joy we all have. Even though Bella wouldn’t give us a smile…she looks healthy and relaxed. She also looks very inquisitive.

I’ll be honest…my thoughts did go to her birthmark. (The large red bump on her scalp) I can be a little insecure about it still from time to time. We’re treating it because it was harming her, but we probably would treat it regardless at this point for cosmetic reasons. I’m all for loving yourself as God made you…but this in particular can give her issues down the road and is a quick and mild fix. That all being said, I love it because it’s a part of her and what makes her, her. I’ve grown to accept it as who God’s made her…but know that if there’s a solution that will improve her quality of life…I’m going to take it. Especially if it’s not harming her. My eye does go to the red bump…as I’m sure other’s do, but I’m not sad about it anymore.

As my Grandma said “If that’s the only thing she’s taking out of the NICU with her…we can rejoice” Or as Dustin says lovingly “She’s so beautiful…maybe God put it there to keep her humble.” haha

These photos are what I dreamed of. They’re as “Pinterest Perfect” as they come…but not because they were from a perfect situation. They’re perfect because they represent a warrior in this little one. A dedicated village. A sense of determination and grit and heart. The represent the heart of our God. That he loves us and wants us to grow in Him.

So excuse me while I go cry in a corner with a handful of Hershey Kisses while reflecting on the simplicity and beauty that Teresa captured.  Here’s a post on Facebook that I made as soon as I saw the photographs.

“Before Bella was born…before I was pregnant with her…before our miscarriage last year…I filled Pinterest boards with newborn photography. I dreamed of our little family…perfected behind a creative lens. I virtually “shopped” for outfits and themes.

After we lost our first pregnancy I deleted those boards…there wouldn’t be any newborn pictures.

But then we found out months later we were expecting Isabella. My faith in God gave me the courage to embrace hope. Hope that this little soul would be in family photos. Once again I filled inspiration boards…as the months went by they became tailored to a little baby girl ?

As much as we can plan, God directs our lives. I hadn’t dreamt that Bella would be born 3 months early and we would spend 110 days in a Neonatal Intensive Care Unit. I never imagined it’d take 60 days for my own mother to touch her…or almost 6 months for these precious precious family photographs.

While in the hospital a photographer took pictures of us when Bella was only 14 days old. Not yet 2lbs…these photos are now so special…even with her wires, no clothing, and cpap on. Yet…I still dreamed and hoped for pictures of our sweet girl free of hospital walls.

The road to these photographs is marked with loss, heart break, confusion, joy, peace, fear, and more. The truth that we are even physically here in these pictures does not fall short on us. We miss our first little one terribly, but are so thankful Bella and I are here. Tears run down my cheeks as I realize my dream of family photos has been honored by our amazing God.

And then, to add that the amazingly talented young women and friend who captured these has children of her own..and one who has/is facing medical challenges…blows me away. Teresa Young was so gracious and flexible. We had to cancel on her because Bella’s gtube fell out. We didn’t have our fence painted or even our own blanket to pose on…but she came to our home and captured these for us…at no charge. She used hand sanitizer without me prompting and understood how fragile Bella was and how she was one of the very first non-family members to meet her. I was sweating buckets and Bella was nervous being near grass for the first time…but it worked. These pictures are so anticipated and treasured. The power of God working through Teresa is incredible. Please, consider getting family photos done. Things don’t have to be perfect. You don’t have to be your goal weight or have everything figured out. I was terrified Bella would vomit all over. I was worried her birthmark would look weird. (She didn’t and it doesn’t). Whatever is holding you back, don’t let it. You won’t regret it. Consider Teresa Young. She’s amazing. Thank you for creating something priceless for me. And sending them at the perfect time…when there’s fear and uncertainty and nervousness in my heart for my sweet girl.

I’ll just be over here crying…and thinking up ways to display this dream realized in our home.”

Annnd….two from her NICU photoshoot

Love & Laughter,

T

Living Over 100 Days in the NICU

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

I’m Getting Tired of the ER…When Bella’s Gtube Falls Out Pt1

Isabella in the ER with her tube replacement kit.

Hi everyone,

(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!

I love you all,

XOXO Tiff