Overnight Continuous Feeds Via Gtube

Our setup for overnight continuous feeds

We began overnight continuous feeds recently and it’s been such a game changer! Isabella has trouble gaining weight and was once slapped with the terrible diagnosis of “failure to thrive.” There are many reasons why she can’t eat by mouth, but for this post I’ll focus in on what an overnight continuous feed looks like for us.

Disclaimer: All of the feed rates/information is specific to Isabella and Isabella only. We receive recipes/directions from a Gastroenterologist and Dietician. If you would like to try continuous feeds, please connect with a medical professional.

I can eat while I sleep, what’s your superpower?

I absolutely love the cute Honest Company diapers with the apples. We haven’t been able to share the wonder and beauty of Fall with Bella outside, but have decorated and used fun Fall things around the house…like these diapers.

Getting Bella Ready For Bed

Before bed, we put Bella in her pajamas and hook her up to her extension set. (I read it was best to attach the tubing to her diaper. I’ve gone away from that because we change her diaper throughout the night.) What you see here is her Mini One Feeding Tube attached to her extension set. We then give meds and her feed through the extension. The extension is good for an entire week. The feeding bag, which is filled with formula and attaches to the pump, is only good for 24hrs. (Yes, we throw away a pump bag and tubing every single day. It’s a crazy amount of waste).

The First Night

For the first night I had Bella sleep right next to me. I was very nervous about her strangling herself, pulling her button out, or vomiting and choking/aspirating. Here you can see Bella is hooked up to the pump tubing, IV pole, and extension set. It went amazingly. She didn’t even vomit! I woke up a lot of check on her but she seemed so happy and content. When I woke up I realized I had gotten SO MUCH SLEEP and so had she. It was crazy. I’m used to only getting 5 hours, interrupted. To switch to 8 hours was a massive blessing.

Why Do Overnight Feeds Help Isabella?

Overnight continuous feeds work well because Isabella has GERD (severe acid reflux) and a premature GI system. She is unable to take large volumes of formula at a time via feeding tube without throwing it up or being in pain. The goal of a continuous feed is to ensure she gets the nutrition she needs. The hope is that the very tiny amount of volume she gets per minute will be tolerated well and she will be less likely to vomit with less in her stomach. It also helps that she can rest uninterrupted.

Of course this is an added bonus to us! We have been on a “newborn” schedule until now (7 months) and her feeds were taking us a minimum of an hour and a half. We would need to hold her upright for an hour during the feed and then another 30 minutes to help prevent vomiting. Even then she would throw up quite a lot. To be completely honest we would bring ice packs to bed with us while feeding her to stay awake. We would blare our TV and talk to each other or watch movies. We couldn’t fall asleep during her feeds and it was very exhausting. At the time when her vomiting was at its worst we were feeding her 8x a day. To do the feed, hold her, prep the pump, etc, it was 2 hours each time. We literally spent 16 hours a day feeding Bella.

Setting Bella’s Pump, How Does It Work?

The pump can be set for different rates and amounts of volume for her to receive. For Bella, we give her 30ml of a specific formula custom for her every hour. That’s 1/2 an ounce an hour. Or, 1/2ml per minute. It’s basically like an IV drip, only with formula. We allow this to run from 10pm until 9am. The formula is good to be hung for 4 hours. We wake up 2x to refill the pump bag with fresh formula mixed up and prepped in the fridge.

Why Do You Wake Up?

We wake up at 2am and 6am. At this time we rewarm a bottle and add the liquid to the pump bag. We also check on Bella’s tubing, change her diaper, and check for leaking. At 2am I also give her a medication that I push through her tubing with a syringe. At 9am (or later if she’s still sleeping and we can squeeze a bit extra formula in) her alarm on her pump will sound and I will turn it off. The alarm sounds if the bag is empty, but we set our own alarms. We certainly don’t want to forget to refill the bag or else the pump will pump air into her belly! That can be very painful for a little one. Above you can see that her Gtube sometimes leaks. We have to change her outfit and sheets when this happens.

Does She Still Eat During The Day?

Yes! Bella still gets fed 3x during the day. We give her 75ml over an hour at 12pm, 4pm, and 8pm. She gets a little over 1ml an hour. She tolerates it rather well and usually just naps during the 12pm and 4pm feed on my chest. I still have to hold her upright for an hour and a half. Then, at the 8pm feed she falls asleep and stays asleep for the rest of the night. Of course we accidentally wake her to take her to bed and “hook her up” but she usually just groggily smiles and then falls back asleep.

I love feeding Bella. It’s a very special time. She snuggles up and I have an hour and a half to just be cozy with her. In the beginning I had to do this A LOT (8x a day shared with Dustin). That made it hard to do anything, including making insurance calls and eat. Now it’s only 2x a day and Dustin does 1. This 3 hours is helpful to slow down and rest. Above is my setup for Bella’s feeds. I’m tethered to her and her pump so I make sure to empty my bladder, get anything I want nearby and get comfy! I just finished a fun book called Girl Wash Your Face.

Overnight Feeding Has It’s Challenges

So, sleeping almost all night and not waking up every few hours is amazing. It’s so crazy awesome. BUT, there are some challenges with overnight feeds.

Bella moves around a lot and can pull on her button.

We alter her sleepers if they don’t have snaps by cutting a hole in them for the tubing. I run these down her leg to help keep her from tugging on the tubing or getting it caught around her neck. It’s actually pretty hard to find a ton of snap sleepers that are warm! So, we use zipper ones and just alter them ourselves.

We just recently began running the tubing through an empty paper towel roll to help keep it from away her head.

Sometimes if the button is pulled she leaks all over herself and the bed. We have to change out her clothing and the bedding.

The friction on her button causes her to break out. She can get skin breakdown near her stoma (stomach hole). So we have to keep bandages on it and rash cream to keep it from bleeding.

Sometimes I worry about her silently aspirating the formula into her lungs. If she does it silently after vomiting, I have no way of knowing or stopping the pump if I’m asleep. I’ve had to simply give this fear to God and trust that Bella is big enough to turn her head and spit formula out.

Celebrating with a new “I slept through the night” onesie!

Overall, It’s the Right Choice For Bella

Continuous overnight feeds has certainly helped Bella so much. She still vomits at least once during the night or morning, but it’s not a lot of formula! Sometimes she’ll go all night not vomiting and will simply wake up throwing up a small volume! I don’t even have to change her bedding. For us, this is awesome. She was throwing up 5+ times a night before and not gaining the weight she desperately needed. Now, she seems to be hitting new milestones and seems to rested. We’ve put off continuous feeds during the day, to keep her from being hooked up all the time, and hope we can keep avoiding it by doing this. We can also avoid certain medications to empty her stomach quicker and a GJ tube which puts formula into her small intestine!

Bella hanging out in bed with her big sister, City Kitty!

Also, note, our bed is made! Thanks to the extra sleep I was getting. I can’t remember when I took the above pictures, but you better believe the bed is made now almost every day thanks to the restful night and clean bedding with no throw up!

Love & Light, T

3 Months On Propranolol; Treating Bella’s Birthmark

10 / 9 / 1810 / 9 / 18

Isabella isn’t sure about her unicorn rocking horse

We’ve been on our Hemangioma journey for quite some time now. I’ve learned a lot about vascular birthmarks. I’ve also learned a lot about medications.

We made the decision to treat Isabella’s Hemangioma (the large red tumor on her scalp) because it was ulcerating and causing harm to her.

That being said, you can read more about that decision and meeting with a top Pediatric Dermatologist here.

Isabella has been taking propranolol for almost 3 months now. This is a blood pressure medication that helps to treat Hemangiomas, which are full of blood vessels. We are very happy with the progress and anticipate the birthmark fading more and disappearing by the age of two.

Hemangioma before treatment, June 2018, 4 months old

Above: The Hemangioma before treatment. She is 4 months here and it was beginning to have skin breakdown (ulceration). You can see the breakdown where it’s dark. It was also very red and puffy. The space under the birthmark where the skin was, was elevated.

Hemangioma at the end of September, almost 7 months old

Above: The Hemangioma is healed almost completely from ulceration. The coloration is lighter and it has a lot of hair growing out of it. She’s about 7 months.

Here is the side-by-side. The top is when it was at its worst and the bottom is how it looks today after treatment. We gave/give her propranolol and also used a topical antibiotic to prevent infection.

Before treatment, above.

What it looks like now.

I’m so thankful I made the right decision and listened to my mother’s instinct. We were told by a nurse practitioner that the darkening spots were nothing to worry about and that she had seen hundreds of birthmarks like it before. I wanted to make sure, so I sent images of the spots to our Pediatric Dermatologist. He immediately got back to us and put her on an antibiotic and had us come in for an urgent appointment to begin treatment. He explained that it was, indeed, ulcerating and that it was very dangerous.

If your child has a Hemangioma, please seek out medical advice. It’s best to reach out to a Pediatric Dermatologist who has experience with vascular birthmarks. In many cases these will not need treatment and will fade on their own. (I personally know two friends with preemies who have them). In other cases, like Bellas, there could be skin breakdown and cosmetic implications (like a bald spot). If a baby has 5 or more, it’s common practice to do an ultrasound to rule out internal ones as well. Isabella went through this and doesn’t have any internally.

Lastly, thanks for your prayers and here is how God’s answered them since my first post on Bella’s birthmark.

Prayer requests and how God’s answered:

1.) This birthmark doesn’t ulcerate any further and that with treatment we can avoid pain and discomfort.

The birthmark didn’t ulcerate any further. It began to dry up and actually scabbed over. Bella hasn’t felt any pain in 2 months.

2.) Bella tolerates the medication.

Bella has tolerated the medication fine! Her hands and feet are sometimes cold because of the blood pressure medication, but no other symptoms are noted. Sometimes she’ll vomit a dose, but she vomits all the time, so we don’t see any correlation.

3.) That we would be able to handle the magnitude of treating such a little one with such a serious prescription. That we would be extra careful with doses and track it well.

The medication was/is super scary to use, but it’s become habit. We double check the dosing and make sure it’s given with her feed. We use syringes and give it to her through her Gtube. At first we tracked it with an app. Now, we know exactly when she gets it and have it written on a schedule board in our kitchen with her medications. We also have the dose written on the board. I keep a screenshot of her medications/doses on my phone as well.

4.) Also, pray against any internal hemangiomas. We have no reason to believe she has any, but it is a possibility.

We did an ultrasound and there were NO internal hemangiomas! There was a strange spot on her liver which we have to go back for another scan in a month or so, but other than that, no issues. The radiologist thinks it was just a shadow and after a full blood work work up, our GI specialist agreed it’s nothing to worry too much about.

Have more questions about Bella’s Hemangioma? Feel free to reach out. Here’s a quick resource as well.

In Him,

Tiffany

Family Photo Shoot! 6 Months Micropreemie

9 / 29 / 18

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,