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.
Side by side comparison
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.
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.
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 vomittedso 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 shebabbled 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.
One of the greatest gifts we’ve received are professional photographs taken in the NICU. These were taken while Bella was only 14 days old. I remember signing up so excitedly on the paper sign up sheet in the family lounge and then crying when I realized she would have her cpap (breathing help/mask thing) on. I walked back up and began crossing our names off the list. But Dustin looked at me and said “Tiffany, we want these pictures. We have nothing to be embarrassed about. This is her right now. This is her journey.” It’s true! I’m so glad we didn’t wait until she looked “ideal” to take these photos. This was us. This was her. This was our reality.
But of course I struggled when I looked down at her and the photographer walked into the room. I even asked the nurses if we could sneak the cpap off for a few photos. (So silly of me). I was still very much overwhelmed and in a lot of pain from my emergency c-section. I was also pumping like crazy, living in a Neonatal Intensive Care Unit, taking pain killers, taking blood pressure medication, and trying to be a mom. It was one of the hardest times of my life yet it was filled with so much peace and joy. I believe that this is reflected in these photos.
To be honest, I almost didn’t want anyone to see these. Bella looks…scary. Kind of like an animal. She doesn’t really look like the cuddly baby you imagine or see in pictures. BUT we loved her all the same and I held onto hope that she would grow and develop into a beautiful little one…and God didn’t put that hope to shame!
Looking back, I carefully curated things I shared with the world. Dustin and I always wanted the way we presented our story to be a story of hope and love. We wanted Bella to be able to look back and be proud of how we shared her journey. I believe we have been good stewards of this. Some questioned early on…including us…if we should share so transparently about our journey. I know it’s not for everyone…and not everyone is called to it…but we felt we were called by the Lord to share Isabella with everyone in a public way.
From the day years ago that God told me I’d have a daughter and to name her Isabella Melody we’ve known she would be used greatly in His Kingdom.
So, I share these photographs to inspire others and give them a HOPE. You probably are looking up viability of a 27 weeker or maybe you are in the NICU and hope your baby will look a bit different as the month go on. (They will).
Isabella was born at 27 weeks but only weighed 1 lb 7 ounces due to restricted growth. I had an emergency cesarean that I was put under for since I had severe preeclampsia and stage 2 HELLP Syndrome that threatened my life.
If you notice the shock and awe of this image…it’s because this was the very first time I held Bella cradled in my arms and without doing skin to skin! For 14 days I had only held her chest to chest and while doing kangaroo care (skin to skin).
Look at those tiny hands!
As the days passed her coloring got better, she grew, and medical devices and medications were slowly taken away. Now, she is 6 months old and doing great. She has a feeding tube due to silent aspiration but other than that she is a healthy, happy baby.
If you look closely you can see the strange white hair that covered her entire little body. This is called lanugo and went away after awhile. She was very fragile at this time to we used help getting her out of the isolette and she wasn’t moved around too much.
I’ll have to post more about this information, but she doesn’t have clothing on because she was in a controlled warm isolette and she needed to be seen by nurses/doctors. As she grew she could wear clothing…around 1 month or so.
I want to thank Simon Says Smile for this amazing gift to us. This is a volunteer program offered through Black Dog Photo Co. They came and did this photo shoot free of charge. (AND later helped us when we accidentally overrode these pictures). AMAZING people.
Lastly, we had another amazing photo shoot done by Teresa Young. She also gifted these amazing photos to us. This was a very emotional moment as I had dreamed of some “normal” looking images of my tribe. Here’s a little teaser and I’ll post the rest another time.
Curious about her birthmark on her scalp? It’s called a hemangioma. It’s a superficial birth mark. Learn more from this post.
This little princess is wise beyond her years. 6 months, about 9 1/2lbs in this image. Adjusted age is 3 months.
