Isabella’s Vomiting Answer (For Now)

Hello Everyone!

It’s so hard to find the time to write…but I make it happen.

Tonight it’s either a bubble bath or writing a quick update…and I think an update is overdue, especially with the new feeding schedule we’ve acquired.

Isabella is doing very well! We have been doing continuous feeds overnight for about a week now. She is sleeping through the night and seems to be growing so much better. She doesn’t vomit at night as much and seems to be able to sleep peacefully while being fed. That’s crazy!

Below are a few “real” posts about Isabella’s struggle

This is what a life looks like with Bella. It’s so hard to see her in pain, but we are so glad she is improving. I wanted to share some “realness” with you to get a small glimpse into our daily struggle.

Although her tummy still gets upset and she does vomit, it’s not as much. Bella moves more and thus has a pretty good aim for mommy/daddy’s face. Here Bella projected all over the couch and Dustin’s mouth! Ew!

She’s in pain a lot from her feeds. Here, below I captured her hurting. We can’t not feed her, so we have to pause and restart her pump until she can handle it.

Above is the amount of laundry we have after just one trip to Akron Children’s Hospital. There are usually at least 5 burp cloths, a change of clothes for me and her, and blankets.

Every night we change Bella’s bedding (before continuous feeds) sometimes up to 5x a night. Currently we only change it once! Above you can see we are changing out her clothes, burp cloth, and bedding.

Below, Dustin helping to soothe Bella and catch her vomit.

It’s certainly not glamorous, but we do our best to keep a positive outlook. We use a ton of baby wipes and burp clothes. Bella’s still too tiny to give a bath every time she vomits or else she’d be burning a lot of calories she desperately needs to grow.

The Current Diagnosis

Currently the Gastroenterologists have agreed that Bella has severe GERD/reflux and a premature GI system. We did many tests to explore her vomiting further and nothing critical came to light. At this point, we will settle with the diagnosis. Of course she’s not gaining as well as she should, but she is gaining! We will celebrate this!

The Tests

We did the following tests to rule out anything underlying. Full blood work, Upper GI, Gastric Emptying Test, PH Probe, Barium Enema, and multiple Xrays. Her care team and I agree that there’s no need currently to do further testing, such as a scope.

The Solution(s)

Our current solution to her vomiting and not gaining as well as she should is the following:

Her Special Diet:

Her formula is fortified to be 30 calories per ounce. We use Elecare which is hypoallergenic and easy to digest. We also add Polycal which adds calories. During the day we mix in Beechnut Rice Cereal.

Continuous Feeds/Bolus Feeds

We now do continuous overnight feeds. That means Bella gets fed from 10pm until 9am. I’ll have to write much more on this. This is a great solution because she can handle a small amount of formula while laying down. This also ensures she’s getting nutrition without throwing it up. She receives 330ml and gets 30ml over an hour. We wake up to refill the bag and also to change her diaper twice. She can usually sleep through it…or wakes up, smiles, and goes back to sleep. She usually vomits once per night.

Bolus feeds, or one time larger feeds, are given three times during the day. They happen at 12pm, 4pm, and 8pm. We give her 75ml over an hour. Sadly, she is throwing up quite a bit during the day still, but we know the continuous feed overnight helps make sure she’s not losing too much.

Medications

Isabella is on medications to help manage her GI issues. She takes both Omeprazole (commonly recognized as Nexium/Prilosec/Etc.) and Famotidine (otherwise known as Pepcid). Both of these work together to help her stomach acid and relieve her stomach upset. Omeprazole blocks the acid production of the stomach and Famotidine, which as I understand it, decreases the amount of acid.

Upright

Bella throws up when she’s moved after a feed. To combat this, we hold her upright for at least 30 minutes after her daytime feeds. If we sit her down too soon, she usually vomits. This makes each feed at least an hour and a half. One hour for the pump and 30 minutes to hold. I don’t mind cuddles at this point, but she’s getting bigger and wanting to move around more!

Many of you asked about her esophagus muscles. We asked as well. We know they are premature and not developed well. This means that she’s unable to protect her airway or keep food down. We know this from a swallow study we did in the NICU. That being said, the specialists have explained that this will improve in time and there’s no need for surgery.

Thanks to some amazing friends, (Thank you Mr/Mrs. Hower!) we now have a sit-me-up-seat that can help her eat while playing. I’ve been working with her to get used to it and so far she loves sitting in it. Hopefully soon she can eat while in it and not fall asleep!

Other Options

Other solutions are still on the table for Isabella. We can switch to continuous feeds all day and all night, utilize medications that help her stomach empty faster, or have a GJ tube inserted in place of her current Gtube. For now, we are going to continue with the overnight feeds and pray we can avoid other options. Of course we are willing to explore them if needed.

Thank You & Not Being Able To Respond Sometimes

Thank you again for all of your love and support. I’m so sorry I’m not able to fully respond to all comments. I try to but sometimes I’m just so busy! I read each one and am so moved by all of your continued support and love for Bella. I am so excited that as she gets bigger she can meet many of you!

Love Love,

Tiff

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

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