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

Isabella Is 7 Months Old! NICU Follow-Up Clinic Update!

10 / 4 / 1810 / 4 / 18

How Are Things?

Yesterday (as I edit this, 2 days ago) Isabella turned 7 months old! This is such a crazy milestone! We are over 1/2 way through her first year. We spent her first 3 1/2 months in the NICU and have been able to celebrate 4, 5, 6, and now 7 at home! When your child is medically fragile or had a rough start to life, you celebrate every milestone possible!

So, where are things? How is Isabella doing? I get this question (as does everyone who knows Bella well) asked often. It’s a hard question to answer. The answer isn’t necessarily “bad” but it’s not quite “great.” I usually say she’s a very happy and content baby. She loves life and is growing. Then I say that she is struggling with excessive vomiting and that there are some health concerns. This is a great summary. It’s kind of like “Thank you for asking! We’re OK. She’s OK. Life is so great at home. But, please don’t leave me off your prayer list yet. We’re still in it. We’re living and loving it but also struggling sometimes.” I don’t typically even begin to explain the stress of the hour-to-two-hour feeds, the unending vomit laundry, the financial stress, the lack of sleep, or grieving not being able to have more children. But I’m so thankful and happy and grateful. It’s a mixed bag of emotions.

Making Myself Post An Update

I had a few minutes to write today. 30 to be exact. As I look up at the clock I see that Bella’s next feed begins at 7:00pm. She’s playing peacefully in her rock n’ play with her turtle toy, wrapped up in a pretty crocheted pink blanket.

I didn’t want to write. Even though I know I always feel better and I know others want to know how Bella’s evaluation went…I’d rather lay back on the couch. I pulled up my blog and it didn’t come up. Probably some simple technical error Dustin will fix when we gets home from having coffee with a good friend.

It seems as if there’s a million reasons to NOT write, but I realize and have been inspired by a book (Girl Wash Your Face by Rachel Hollis) I’m reading to push through the roadblocks and make this a priority. That being said, Bella’s beginning to screech a bit so my 30 minutes may be less.

Let’s jump right in!

NICU Established Pediatric Development Assessment

Yesterday we headed up to Akron as a family! Dustin usually has to work but decided to take the day off since it was a bigger day than usual and we had Bella’s Neonatal Follow-Up Clinic.

The night before and morning were ROUGH. Bella vomitted so much on the way there, soaking her sleeper and causing her to cough and retch. It was really heartbreaking. She finally fell asleep as we jumped on the highway. The sun didn’t come up until we began to reach Akron. Each of us were lucky to get 4 hours of sleep. We ate Burger King breakfast and drank coffee. I tried not to nod off in the back seat with Bella. We couldn’t find anything good on the radio either.

First up was Bella’s feed. We got unloaded and headed into Akron Children’s Hospital. Bella needed her feed before her appointment so we were there early. While signing in, we got to run into one of our primary nurses, Jackie, who took our family on when Bella was only 3 days old! I was so embarrassed Bella (and us) looked like a hot mess, but she was so encouraging and loved seeing how chubby Bella has become. Also, she’s pregnant! Her little one is passed the gestational age of Bella when she met her. Crazy!

Next, we sleepily headed up to the floor and began prepping her feed. We all went into the family bathroom and I also changed her into a cute outfit. Bella was hungry. Surprisingly the nurses came out after we got her feed ready and said they could put us in a room and get her ready for the appointment! How great! So we ended up getting in right away. We saw a nurse that did Bella’s weight and vitals and then another nurse that did a full interview about Bella and her health.

We had begun her feed but warned the nurses of her vomiting. After she’d gotten some food, we held her and the nurse began her testing. Holding a colored ring in front of her, tracking her eyes, etc. At this point Bella began projectile vomiting over the office. She was retching and lost her whole feed. Dustin’s on the floor trying to mop up the puddles of vomit and I’m soaked and trying to catch it in a burp cloth. The nurse looked shocked. She asked “is this what it’s like all the time?” We nodded and I began to cry. Of course it was agreed upon that we needed to continue testing and solving this massive issue. The vomiting aside, things went great!

We got Bella cleaned up (and myself a bit) and prepared for the doctor. Doctor Langkamp came in and was super friendly. She had another doctor that was learning with her. She immediately took to Bella and Bella soaked up the attention. Laying on the exam table, Isabella was tested in different ways. The doctor held her up, checked her reflexes, checked her eyes, busted out colored toys to Bella’s delight and “talked” with her as she babbled and cooed.

She asked us if we had any concerns.

Yes. A Million.

I tried to think back to my list and zero in on the most important things.

Question: The vomiting. Could this be an underlying syndrome? Something like a bigger disorder. Answer: That’s highly unlikely.

Question: Her ears (one is folded over). Could this be a sign of a genetic issue? Answer: Probably not, no. But you’re past the time for a quick fix. She’d probably need surgery…I responded that we didn’t mind it. I actually find it cute. We just wanted to make sure it wasn’t an issue.

Question: How will we know if she has any neurological disorders? Answer: Well, we won’t really know until 12 months. We don’t typically see issues this early on. But things are looking really great and her risk is low.

Question: Her tongue and lip look tied. We had a referral to a dentist but that didn’t sit well with us. What are your thoughts? Answer: She can put her tongue out great. It could certainly be attached in the back, but in my years of experience this isn’t an issue at all. There’s no need to have this looked at further.

Question: Bella’s getting big and more active. She doesn’t want to be held during feeds but needs to sit upright or else she vomits and loses food. Any chair suggestions? Answer: Her Physical Therapists like a Fisher Price Sit Me Up Chair. (Added to my list!)

Question: Can you think of any other tests Gastroenterology could be doing (for the vomiting)? Answer: No. It’s not my area of expertise. They do a great job (which we agreed with), but I’m surprised she’s not on a medication to help empty her stomach quicker. We will ask about this next.

The Hard Question

At the end of the assessment. The doctor sat and reviewed everything with us. Of course she wanted Bella to be bigger, but she explained she was very impressed with Bella and that we were doing everything right. I’m a gold star kinda gal…so this made me feel good. Although in my mind I reminded myself that this wasn’t about US, this was about God and his mighty work in her. Although I work with Bella and try to be a good steward of my time with her and being her momma, ultimately it’s God’s mercy and love that helps Bella grow and develop. Also, if she were doing worse for wear…that wouldn’t be a direct reflection of our bad parenting or lack of faith or God’s lack of love for Bella. It’s vital to keep these things in mind when parenting a child with medical needs.

I asked the question I was most scared about again, only more directly.

Will Bella have any cognitive issues or delays?

Answer: We can’t say for sure, but things look good and I wouldn’t worry about it. Honestly, you have plenty enough to worry about. (Amen, sister. I like this lady already).

I probed a little bit further. She explained we probably wouldn’t see issues until about 12 months. But that things looked good. Having her have a brain MRI earlier on also gives me some confidence, too. (She had one in NICU).

We were referred for a (routine) hearing test with audiology (yet another specialist) and advised to keep up with GI. Dr. Langkamp said “Enjoy her, she’s a delight.” Bella kept grinning and babbling all the way out.

(TLDR) A Quick Summary

Isabella impressed the Pediatric Development Doctor. She is still small and is in the less than 1% for her age but she is making excellent progress in developments. The doctor loved how interactive she was and seemed really affirmative. Later, we received a letter said she scored a 9/11 for the Bayley Infant Neurodevelopmental Screening. This puts her at low to moderate risk. She was able to do a lot of the activities but struggled to sit with slight support for 10 seconds and had no interest in their white little pellet.

In the doctor’s own words:

“Medical Decision Making: Isabella is a former 27 week gestation preterm infant who has shown excellent progress in development. Developmentally, she is functioning at an appropriate level for her age adjusted for prematurity. With respect to her chronologic age, she shows delays in milestones. She is making slow progress in growth and continues to have frequent emesis and GERD. I recommend that she continue with GI and nutrition for further management of her growth. I do not recommend starting oral feeds at this time. I recommend having her upright in a high chair at the table when her family is eating. We discussed possible use of Fisher Price Sit-Me-Up floor seat. She will be due for hearing test in 3 months.”

Diagnosis:

1. Delay in milestones

2. Dysphagia/ g-tube dependent/ GERD

3. Extreme prematurity

Currently Bella sees:

A: Primary Pediatrician -Pediatric Dermatologist -Eye Doctor – Audiologist – Speech Therapist – Dietician – Developmental Pediatric Doctor – Surgeon – GI Specialist

At birth she was 1 lb 7 ounces. Yesterday she was over 10 1/2 lbs!

Her BMI is 14.97 and is in the 9th percentile! (She’s proportionate!)

Her weight, head circumference and height are all in the less than 1%.

So, there’s the current update.

We actually headed over to Pediatric Dermatology after for a general follow-up …but that’s an update for another day.

Thanks for joining in the crazy. We love you,

Tiffany

Sometimes God Speaks From A Starbucks Cup.

9 / 13 / 189 / 13 / 18

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.”

I hear you Lord. We’re all ears ?