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 Gets To Meet Her Godmomma After 7 Months

10 / 8 / 18

The past few weeks have been extremely exciting here!

Isabella got to meet both her Godmother, Sarah, and NICU Bestie For Life, Evelyn (which deserves it’s own post)! I wanted to share some special pictures and moments. We cherish each and every time we can share Bella in person with others.

Sarah has been in my life since I got married in 2010. Dustin, my husband actually introduced us and she sang and played guitar at our wedding! (Click here to hear the song she played, Your Guardian Angel by Red Jumpsuit Apparatus) Since then we’ve become best friends. We’ve bonded over many cups of coffee and random Youtube videos.

Sarah’s one of the strongest women I know. She loves Jesus and lives to serve others.

She’s also a very talented musician (check her out here).

Before Isabella was born, I asked my two besties, Sarah and Jessica, to be Godmothers to Isabella. For me, that meant that they would support Isabella in her faith journey and always be there for her. To us, it was kind of like asking them to be an auntie.

Since before Bella was here these ladies have loved her and prayed for her. Jessica’s been busy planning a wedding and being a newlywed but has always prayed for Bella and cared for me. Sarah has gone out of her way on so many occasions to bless us with Starbucks, words of encouragement, gifts, and hugs.

Sarah meeting Bella through our glass door

Above: Before meeting Bella in person, Sarah got to get a glimpse of her through our glass door in the summer.

So it was super exciting after 7 months that Sarah was able to visit and hold her Goddaughter! Bella loved every second and fell asleep! She immediately felt the love that Sarah had for her. God had hand picked both Jess and Sarah to play a special role in Bella’s life. I’m so thankful for the prayers and support they’ve offered…even without ever setting eyes on Bella in person.

XoxO

Tiff