Hello All! It’s been a little bit! Instead of writing an update on Isabella, I thought I’d post about how our bedroom is set up for her and her feeding tube! Before we brought Bella home, I looked everywhere online and really only found a few resources for setting up a space for a gtube fed baby that I loved. I decided that having Bella and her equipment (even though it’s not a ton) could look stylish and neat in our space. So I’ve worked hard to find solutions that work for us. Of course, it’s taken a bit, but this is what we’ve come up with! 

She’s napping beside me right now…so I might have to make this shorter than I’d like. When she wakes up, we’ll have to play!

For context: Isabella is 9 months old and has a gtube. Her gtube is a Minnie One Button by AMT. She is on continuous overnight feeds. She just recently outgrew her bassinet (she’s 12 1/2 lbs and it holds up to 15 but she’s rolling). She’s itty bitty thanks to being a micropreemie and having feeding difficulties! 

Isabella’s Clothing 

Babies with Gtubes may need to be “hooked up” all night. We primarily use button down sleepers. We run her tubing through the space between the buttons. Of course, sometimes I love a zipped up sleeper OR we purchased them before we knew she’d have a Gtube (darn my need to be “prepared”). In this case, I take scissors (fabric ones work best) and cut a slit near the leg. If the sleeper zips down instead of up (like in this picture above) we can run the tubing out the bottom before zipping it all the way! It’s also interesting to note that Gtube babies can leak. Their stoma (hole in their stomach) leaks and sometimes gets stomach stuff on their clothes or you or their bed. In this case, Bella’s gtube leakage stained her sleeper. The acid in the stomach contents basically “bleaches” it. See the right side?

In some cases a baby may need to have gloves to cover their hands from grabbing their tubing. Bella got too smart and pulls her gloves off. We love the sleepers that have built in mittens. She has more trouble pulling them off. But, they aren’t readily available in larger sizes. I’ll have to make a post all about the best clothing for tubies later! 

Our Room Setup

Our home has only 2 bedrooms. It’s a small cape cod style brick home. We set up a lovely nursery for Isabella, assuming she would spend time in the other bedroom. Instead, we have Bella in our room out of necessity and love it! (I would strongly suggest sharing a room with your baby as long as you can. Some of the most precious moments have taken place in this little room. Lots of memories).

Why Does She Need to Be In Our Bedroom?

1.) A & B’s

Isabella has a lot of health concerns. When we brought her home from the NICU she slept in our room because she had had A & B’s (apnea and bradycardia, pauses in breathing and lower heart rates) before being discharged from the NICU and we weren’t comfortable having her sleep away from us. She was clear of them, or else she wouldn’t have been able to go home, but we were still a little bit weary of them. 100+ days in a Neonatal Intensive Care Unit does that to you.

2.) AC

Our home also doesn’t have central air so we would have her stay in our space with the air running. 

3.) Overnight Feeds 

Until Bella was over 6 months old we were on a strict 3 hour schedule. When she was about 7 months we went to a 4 hour schedule. Then, around 8 months we switched to overnight continuous feeds.

Before switching to overnight feeds, Bella would be sleeping, then we’d get her up and she’d need to be hooked up to her pump and would eat for an hour and then be held for at least 30 minutes afterward or she would vomit. We would pause the feed if she retched and sometimes held her for two hours or longer. This was very tiring. We fed her 10:30pm 1:30am, 4:30am, and 7:30am. Then, we graduated to 11pm, 3am and 7am. You can imagine how much that helped us! Then we switched to continuous feeds which is a win win for everyone! 

During the night feeds it was easiest to just have Bella close-by. We took turns doing the feeds while sitting upright in bed. We’d watch movies on our phones, play games, or read. Eventually we’d get so tired that we’d bring ice packs to bed to keep us from nodding off. We could’t fall asleep while holding Bella for fear she’d suffocate or aspirate. We both got used to sleeping with the lights on and lots of noise! 

4.) Aspirating & Choking 

At one point, Bella was vomiting up to 6-7 times a night. We would hear her begin to choke and would run to her bassinet to help her clear her throat. This was terrifying as we practiced safe sleep and she’d be on her back. We got used to her sounds and could tell when she was coughing or about to vomit. We had extra bedding/clothing/etc. If she were in another room we wouldn’t be able to hear her and risk not getting to her in time and her aspirating her vomit. We would also switch our clothing sometimes up to 4 times a night since she’d vomit on us. 

5.) Continuous Overnight Feeds

Now, some of the previous concerns aren’t as prevalent. I no longer worry about A & B’s now that she’s almost 9 months and it’s the winter so air conditioning isn’t a concern. 

We do worry about her choking and aspirating. Although she can clear her throat on her own, we worry she will fall back asleep in her vomit or swallow it wrong. 

She is also now getting continuously fed by her Kangaroo Pump. We need to be able to hear if it alerts us to an empty bag or clog. We do wake up 2x a night to refill the formula, change her diaper, and give her a medication. She can go all night without vomiting, but usually vomits at least once during the night (which we hear). 

The Crib

We moved my makeup vanity to make room for Isabella’s crib. The crib is just basic white and works great. We didn’t have a lot of room in the space so we actually have it covering my closet. We simply scoot it over if I need in it, which I don’t very often since most of my cozy clothes are in drawers. My dad gifted it to us for around $200 and it converts to a toddler bed and headboard. We use a Abbot Safety Crib Mattress with a waterproof mattress cover. Bella’s sheets need changed a lot throughout the night. We use basic gray fitted sheets we were gifted from Target. The fun ruffle is from Amazon, but we removed it because the kitties were enjoying hanging out under the crib during the day. 

Storage Solutions

We found early on that we needed A LOT of storage for Bella.

Diaper Caddies Are My BFF 

To begin, I created a fun little diaper caddy for upstairs and downstairs. This diaper caddy was a big lifeline and helped me stay organized! I found two gray caddies with plenty of storage from Amazon. Both are almost identical, expect the bedroom one used to have some topical medicines Bella needed at night.

The caddy is packed (and re-stocked as needed) with the basics: diapers, wipes, hand sanitizer, and anything else we might need. 

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On the sides I pack:

-Topical Medications

For Bella we have one for her Hemangioma and one for her Gtube site. I wouldn’t ever put oral medications out for safety reasons, especially as she gets older and can reach into the caddy. 

-Split Sponges 

These go around her Gtube site and keep it dry and clean. We usually use sterile ones that we open as needed. We also have made our own with cosmetic sponges. 

-Boogy Wipes

Saline solution wipes to soften boogers (haven’t needed them!) 

-Honest Company Lavender Lotion

My all time favorite baby product ever. I love this stuff and use it on Bella after baths, before bed and on myself! 

-Medical Tape 

We don’t use this a ton, but sometimes need it to secure her tubing or her stoma site. It also comes in handy to manipulate the tubing and move it away from her. 

-Digital Thermometer 

Once a NICU mom, always a NICU mom. She had her temp taken every 3hrs. I don’t obsessively check it, but it’s there if I need it. 

-Teether/Toys

Sometimes you need to be able to grab a toy real quick to distract or soothe a baby! 

-Warm Socks

Bella always would choke herself with her hands when she was younger. She’d gag and then throw up! We would put socks over her hands as mittens because we went through so many. She’d throw up on them constantly. So an extra pair served us well. For a long time she’d grab her tubing, but she’s getting better about it. The socks on her hands also kept her from grabbing her tubing or the med port attached to the tubing. 

-Sanitizer 

Would you want your diaper changed and then your mommy feeding you without washing her hands? 🙂 We sanitize like it’s our business. I’ll change her diaper then give her meds or hook her up to the feed. I use sanitizer in between. 

I really can’t say enough about this caddy solution. It’s awesome. Everyone who helps with Bella knows the caddy has everything you need. I keep it stocked and ready. Some items have been added, others subtracted. Usually there’s a burp cloth thrown on top for emergency spit ups. At the bottom you might find chapstick or a favorite hand lotion for me. I also attach those little sanitizers to the handles to guarantee there’s always sanitizer close by. 

Things that have been subtracted: mittens, gauze pads, cotton swabs, gtube cleaning kits, homemade diaper cream, and water wipes.

Things that have been added: cotten swabs, a nose frieda sucker, saline spray for the nose, assorted toys, and a notepad and pen (to write symptoms, important numbers, etc) 

Makeup Drawer Conversion (ALEX Drawer from IKEA) 

You might know from this blog, but before Bella, I enjoyed writing about makeup and beauty products! I have quite the collection (err hoard) of makeup products. Having a baby changes from things and I don’t add much to my collection these days. I do, however, have an awesome storage drawer set for my things! I kept it in tact as long as I could until Bella’s things overflowed into it. I actually still have my makeup, beauty supplies, and jewelry in it, but have made room for some Bella essentials. (My vanity is now in her room where I get ready and she also has lots of storage in her room.) These items are only essentials and things we need to grab during the night or morning. However, I could see where if you needed the space for other medical items or general baby items you could put them in the drawers. This would be great for a baby with a vent! 

I still have my makeup in the drawers, but have cleared 3 for Bella’s things. 

We go through SO MANY sleepers since she vomits quite a bit. And sometimes her gtube leaks.

We also go through about 6 or more burp cloths a day. 

I juusssttt added a small space for her socks. We noticed we always put them on at night or before her days so I threw them in here. There’s also a few mittens in there. 

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Lastly, I place the diaper caddy on top of the drawers and use the space behind it to hide a few things! We always keep extra sanitizer, sanitizing wipes, a blanket or changing pad to change her on, and a few favorite toys. 

I’ve thought about putting pull out drawers under her crib, but I just run into her bedroom to grab her outfits which are hung up in the morning. So there really isn’t a need. We put extra sheets for her crib in the Alex drawers as well. 

Our Monitor 

As Bella gets bigger, we have the option of leaving her in her crib sometimes without us in the room. I can only count the time we’ve done this on one hand, but it’s a nice option. To be honest, Dustin wakes up and goes to work in his office. I keep sleeping in the room with Bella. He brings our monitor with him and is able to listen and see Bella even though I’m in the room. We mounted our monitor right above her crib so we can see her completely. We absolutely love it. 

We bought the Levana monitor from Khols with some Khols cash that was given to us. I love it. I don’t remember the model. It tells us the time, temperature in the room, and is both color and has great night vision. You can also talk to the baby through it, walkie-talkie style! 

When Bella vomits in the morning after Dustin goes downstairs he can hear her and see us. If I need assistance getting her cleaned up, or catching the vomit, or changing the bedding, he can run up the stairs in a minute. (He works from home). This is great since sometimes I’m a little groggy from just waking up and it’s good to have an extra set of hands. We can also communicate back and forth. He can hear us and we can hear him. Sometimes he can see her grabbing her tube and making a fuss. Sometimes he hears her coughing before she throws up. It’s nice to have him “watching us.” He laughs that he can hear me snoring and can tell if we’re both still asleep! 

Crib Accessories

We don’t keep much of anything in Bella’s crib. I was hesitant about the fish electronic toy, but she used it in the NICU and loved it. We have the one with a remote control. We only set it to “waves” at night as a sound maker. She’s learned to kick it on with the orange button, which is pretty fun. It’s also nice for her to see when I’m tidying up the bedroom and restocking her diaper caddy or getting ready in the morning. I would never have a toy in her crib while she’s sleeping, but if I’m watching I let her have one or two if I’m in the room. 

Trash

We have both a small trash can and a diaper genie. (Both need taking out in this picture). The diaper genie works great and we use it for heavier diapers. The small trash can is used for gauze, tubie covers, medical tape, and wipes. 

You may see these pictures and think things are too “staged.” Well, they are. Although this is how our room looks most days, I do utilize a few tricks to make it look nice. I always stash un-folded laundry on the other side of the bed! I also have a fun robot vacuum and use it in the bedroom from time to time. I try to keep handy storage solutions close so that everything has it’s own place. That helps because otherwise I feel stressed. Every night before bed we tidy up and every morning I try to make the bed. 🙂 

Also, you may* have noticed my bra hanging on the closet door lol. 

The only thing that is different when Bella is eating/sleeping is her IV pole and pump! We bring it up at nighttime. This is what the set up looks like. If you hate light, you’ll want to tape a black piece of paper over the pump face. We don’t mind it. I actually like the glow and pumping noise! 

A Unique Use of Paper Towel Rolls 

Last, but not least, I do worry about Bella getting strangled by her feeding pump tubing. It’s long. And it worries me. We looked online and our best solution is running it through empty paper towel rolls. Our perfect number is 3! She is unable to wrap it around her neck this way. She does grab them and sometimes puts the tubing in her mouth. For the most part she doesn’t. The pump will also alert us if there is a clog, so if it was being wound tight around her it’d alarm us. She usually sleeps very well and only grabs the tubing when she’s ready to wake up and get our attention! She’s never pulled her tube out on her own, but had kicked the medical port open once. That’s for another time. 

I hope this is helpful for any other tubie mom who wants their space to look nice! 

XOXO

T

I wanted to give a quick update on Bella and life. Unfortunately I usually end up writing way too much and over-sharing. For that reason, you can scroll to the bottom of this post for a TLDR (Too Long Didn’t Read) summary. 

Bella’s Milestones

Isabella is doing quite a bit! I have to remind myself that she is only 5 1/2 months adjusted and not the technical 8 1/2 months she is. She loves to coo and make lots of noise. She mimics us and my sister Kayley actually taught her to curl her tongue the other day! I didn’t believe it until she was doing it the next day on her own!

Bella can’t sit up on her own, but enjoys her sit-me-up-chair and rolls around quite a bit. She doesn’t love flipping all the way over and settles for just rocking side to side.

She doesn’t like tummy time, but we are trying to sneak it in every day. I’m not sure if it’s because of her gtube or if the pressure makes her vomiting worse.

A new special love is books! Bella loves to flip the pages and look at the bright colors. She enjoys listening to others tell stories. She especially loves visitors of all kinds. Grandma Julie and Grandma Kim are over a lot and spoil her with lots of attention and play time. She is reaching for toys and pulling hair (ouch!). We are excited as she grows and hope she will be sitting up on her own. 

Bella’s Size 

Little itty bitty Bella is still tiny. She’s in the less than 1% for her age, but we think she’s just extra teeny and cute! A good friend found this adorable art piece that fits her perfectly. (Thank you Zara, Alex and Alex!) Even though Bella is 8 1/2 months, she is just under 12lbs. She wears size 1 in diapers and also wears 3 months in clothing. 

Her size isn’t a big concern currently because her rate of growth is getting better. For once, our dietician seemed pleased with her growth! She averages less than 15 grams a day. Of course they’d like to see her hit 30 grams a day, but she likes to do things her way. 

Eating…Starting Baby Food!

We got the green light just Tuesday to begin trying baby food with Isabella! I rebelled and had bought a small jar of Beechnut baby food to try. (Silly me, I didn’t realize a blend wasn’t the best choice until later). Thankfully she seemed to tolerate it. This will be a long process since Bella has such a strong eating aversion. We are excited to begin working with her and will be allowing her to try fruits and vegetables that are thicker to prevent her from aspiration. 

Our GI Dietician suggested allowing her to be in control during the feeds. We will allow her to hold the spoon and/or reach for the food. We have to be very careful as to not irritate her or bring back scary memories from when she was silently aspirating and we didn’t know it. Our goal is for her to just tolerate oral feeds. She hasn’t had anything orally since we left the NICU in June after her feeding tube was placed. 

For fun, and curiosity sake, I offered her a bottle a few times last week. She had no idea what to do with it. BUT she did reach for it and didn’t cry or knock it our of my hands. She held it and chewed on the nipple. She never latched, but seemed ok with just gumming the nipple. I emptied the rest into her feeding tube bag and let her get comfortable with it. We will go straight to a sippy cup because of her eating issues. 

Vomiting 

Bella continues to vomit, but it is getting better. She is doing overnight feeds which are amazing and allow her to get more in her tummy without gagging. She is also taking medications and seeing our local chiropractor, Dr. Matt Beachy. We have seen a huge improvement in her overall health since starting overnight feeds and seeing Dr. Beachy. Bella still vomits 3X or more times a day, but it is much more manageable than 8x! 

We have noticed other benefits like increased energy, the ability to burp without throwing up, and hair growth! 

Synagis Shots to Prevent RSV 

Bella gets these crazy expensive shots once a month. It’s called Synagis and it’s basically antibodies injected into her to help her fight RSV. It’s surprisingly not a vaccine. Only certain babies that are high risk qualify. The home health nurse comes and gives it to her in the thigh. Thus far we’ve had one injection for November. It’s a very interesting process.

This also means that we have chosen to mostly isolate Bella to home. We have only taken her to the Grandparents and her appointments. We have limited visitors. When we do go out ourselves we change our clothes and sanitize like crazy. Long story short, Bella has a weaker immune system. She needs protected as a micropreemie and we are making this a priority. 

Bella did get a small virus, but was able to fight it off, almost completely. She is a little congested still but nothing bad. The doctors at Akron Children’s Pediatrics made an emergency appointment and assessed her. They suggested she fight it off herself and not to give her medications, which made me happy. She had a runny nose, slight cough (which sounded like a barking seal), and low fever. I believe I gave it to her. She seems almost over it. We also had her tested for RSV to rule it out. She didn’t have it. The doctors are amazing and the one we saw called us that night at 9pm to confirm she was RSV free!

Mourning A Loss

Unexpectedly we found out one of my friends, Elizabeth Brown, committed suicide less than a week ago. Elizabeth was a great friend and I grew up with her and her brother. This loss has really hit us hard and we are grieving. As a mother, I now experience this loss in a new light. My heart is broken for her husband, her family, and friends. This has certainly made me think about life and hug those around me a little longer. I’ve also been feeling a little gloomy, which is to be expected. 

I will miss this special friend and am preparing for her memorial service. My little sister, Kayley, and her were like sisters and she will be speaking. 

God’s Love & Friends

In the midst of a hard week. Things seemed to get harder. We are getting hit with quite a few medical bills (go figure). We were denied help because of how much Dustin makes. This had us quite upset and racking our brains for some solutions. (We are very blessed to have solutions). Anyway, yesterday the financial people called and we were able to get an adjusted monthly minimum based on extenuating circumstances. Praise God! But, for awhile we were sweating it out a bit. 

In the midst of this, some friends really blessed us and went above and beyond. A friend delivered a card and a white rose in honor of Elizabeth and my step-sister and her family sent us a beautiful card and adorable Dinosaur outfit! It was also so funny because Dustin went to buy me these beautiful parenting scripture cards from Sara Vrooman (a friend who has an etsy shop) and someone had already purchased them for me! My cousin Sarah had them mailed to me! These have helped me reflect on God’s love and promises.

These things helped remind me that we are loved. We aren’t isolated (even in “isolation”) and God is bigger than our circumstances. The day the rose was dropped off I had been really sad and was thinking about Elizabeth. Today, when we opened the adorable outfit for Bella we had just gotten home from taking her for a shot, which is always no fun. 

Thank you so much Rebekah, Sarah & family, and Anna, Danny, and Ev for the sweet reminder that others care. 

Moving Forward & Summary

Life is slow and fast right now. Each day I wake up to this beautiful, smart, fun, little human in my room. I get to snuggle with her on the couch and see family. Even though she has a feeding tube and some health concerns, life is good.

She is growing at her own rate and hitting milestones. She has been sick but overcame it! We are looking forward to introducing baby foods and enjoying the holidays.

Today Bella got to see snow for the first time (from the window). She looked surprised at how bright the outside world looked. I looked at her and was so excited over how bright her future is. Even in the midst of heartache and hurts we will keep looking for the silver lining. We will keep pushing forward and living for those teeny tiny small special moments…what other way is there?

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Love & Light, 

T

Tomorrow Isabella will be 8 months old. 8. MONTHS. OLD! (5 Months Adjusted)

It’s pretty crazy to believe we’ve officially spent more time AT HOME than in the NICU at Akron Children’s Hospital. Every time I look at her my heart leaps out of my chest and I haven’t quite gotten over the fact that I can pick her up any time I want to. Or walk further than a few feet with her. Or drive away from the hospital with her. Or insert-normal-thing-moms-do-with-babies-after-bringing-them-home. 

She’s been alive 244 days.

108 of those were spent in the NICU. (The other 2 were “practice” haha when she had an aspiration event at home after being discharged and went back to spend more time there)

She’s been home 134. 

I’ll be honest. Making time to write is difficult. We spent all day at Akron yesterday and I’m pretty tired. But, Dustin looked at me and said, “You gotta write, Tiff. You know you enjoy it.” And I do! But sometimes it’s easier to just browse Facebook or Pinterest. Well, not tonight. For now I’m going to write a quick update. 

How do I reflect on the last 8 months? Other than to sob, laugh, pray, sob some more, and write. Yesterday we spent all day up at Akron. Isabella got to see some awesome familiar faces and she went for her Hemangioma (birthmark) checkup with the pediatric dermatologist.

She’s 8 months and is 11 1/2lbs. She is in the less than 1% for her age, but is doing wonderfully. Small but coming right along, on her terms, in her time.

We always have to plan and plan and plan to make sure we have everything Bella might need. This means bringing two of everything and remembering things she needs to eat via her feeding tube. Her feeds take an hour and a half minimum so we find a quiet, low traffic spot near a family bathroom in the hospital and make ourselves comfy. I used to bring magazines but now I just read on my phone or visit with my Mom/Julie/Kayley/Dustin. I always pack snacks! (More on what we pack for a day at Akron another time). Anyways, my new favorite spot is on the 6th floor of the new Considine building. This building houses a lot of specialists and is brand spanking new. 

Thankfully the building is designed with kids with special needs in mind (Thank You) and we have everything we need to prepare Bella’s pump and feed her while there. We can’t really get away from feeding her since we live an hour and a half away. We also don’t take her to other public places so the hospital it is. 

One of the coolest things about Akron Children’s is everything is connected. No going outside! The two buildings are facing one another, Kay Jewelers Pavilion and the Considine Professional Building. The NICU is located on the 6th and 7th floors of the Kay Jewlers Pavilion.

We stayed here with Bella. This was our life. We lived it for 3 1/2 months. We made friends here. We celebrated milestones. We held our daughter for the first time here. We slept here. We watched movies here. We ate here. We did everything here. Inside a building above the city. Beside our tiny daughter as she grew. 

And so…much like Rapunzel in a tower, Bella stayed in the NICU for those 100+ days with us by her side. And…we yearned for the outside world, too. We watched it snow, rain, storm, sleet. We even saw fireworks fill the night sky.

We would love to hear about what was going on in the hospital…and loved watching the new Considine Professional Building being built. We would overlook the building adjacent from the large window in Bella’s room (Our 3rd Room). The window gave us a glimpse into the outside world. The window helped me keep my sanity. 

That window gave us hope. Hope to someday be on the other side. Hope that life would go on and we would go on with it…with Bella. I didn’t realize at the time that we would spend so much time in that building…and that Bella would have some additional needs when coming home. I didn’t realize that in a few months I would be holding her in my arms…looking out at the same room in which we lived. 

And that’s what hit me so hard yesterday. We were on the other side. 

You guys. We made it. We are on the other side. It was hard. It was crazy. It was wild. But we’re here. We’re here and we’re doing it. We’re doing life outside of the NICU. There’s an extra accessory of a feeding pump and some other quirks…but we’re going to be OK. Bella’s going to be OK. 

I’m letting the tears fall as I type this. I look at this picture and I will never forget. Never forget that room. That small room across from where I sit. Where my daughter began her life. Where we learned to be parents. Where we walked through the the valley of the shadow of death but overcame. I smile. I smile so big. And I cry. I cry so hard. And I hold her and I thank God I’m on the other side with her. 

I’m not sure why we made it and others don’t. I don’t know why I’m still alive. Or Bella. But I know God is good no matter what. He has always been faithful. Even in the loss of our first pregnancy. Even in the midst of heartache He is good. 

And so…there’s a thousand other things I’d like to write, but tonight, I’ll just post these photos. In the background is the NICU. Having Bella looking over where she once lived has a huge impact on my heart. I am so ever thankful. Thank you. 

Love and Light, T