Isabella was born without any birthmarks, but, after a few weeks we noticed a small, flat, red spot on her head. The NICU team assumed it was agitation from her CPAP hat so we switched her breathing assistance to give it a break from rubbing. After looking closely, her primary nurse and I determined it didn’t look like skin breakdown but more of a permanent spot. She threw out the thought, “oh she’s probably got a hemangioma!” I, of course was terrified looking up images (after learning to say/spell it).
My worst assumption ended up coming to fruition, Bella has a large hemangioma that looks every bit as scary as some of the ones I saw with my search. Simply put, it’s harmless, is considered a vascular birthmark, should go away as she grows, and is a collection of blood vessels. We did an MRI to rule out any issues and it’s completely superficial and cosmetic. Long story short, we choose not to treat it a few months ago. We got a second option from a pediatric dermatologist and heard from many neonatologists who treated Bella. We felt that was the right decision and that we would embrace it until things needed addressed. Until…
Why is her birthmark a problem?
Sadly, after being readmitted to the NICU we noticed 3 more teeny red dots/beginning of hemangiomas on her tummy/chest. They are elevating but don’t look scary yet. We were advised to follow up with dermatology to reconsider treatment. When there are 5, it’s recommended to begin treatment because there’s higher risk of internal ones. Internal ones can cause issues with major organs. The large one on her head is also growing rapidly. So, we were waiting for August 9th for her appointment when we noticed the birthmark changing color. I knew these things could ulcerate (skin breakdown), but hadn’t seen signs before. I’m so glad I trusted my intuition. I immediately contacted our dermatologist who confirmed with images it is beginning to ulcerate. 🙁 We began treating it with antibiotic cream and see him on Monday. (He offered the next day but we felt Bella needed to rest after going through so much). He said ulceration could be extremely painful. I’ve seen what they look like when they break down and it’s very painful looking.
What’s next? Isn’t it an easy fix?
We will begin treatment with a drug called propranolol. This medication inhibits the growth of blood vessels and constricts current ones. This is hard for us as Bella is the size of a newborn (7lbs 12 ounces) and the thought of messing with her blood pressure/cardiovascular system terrifies us. That being said, with monitoring her blood pressure and vitals this treatment is safe and effective. It’s very commonly used. We don’t want the ulceration to get worse and we certainly don’t want to worry about internal hemangiomas!
I, personally would also like to prevent the others from getting to the size of her larger one. Since they’re on her chest/stomach they could interfere with her tummy time or gtube. After talking to the doctor, we decided to do a liver ultrasound just to confirm there aren’t any hemangiomas there. So, on Monday we’ll be trekking to Akron Children’s for her appointment and ultrasound.
1.) This birthmark doesn’t ulcerate any further and that with treatment we can avoid pain and discomfort.
2.) Bella tolerates the medication.
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.
4.) Also, pray against any internal hemangiomas. We have no reason to believe she has any, but it is a possibility.
Today was difficult. Since being home from the NICU we haven’t been so scared that Isabella would need to be sent back to Akron Children’s Hospital.
The First Plan To Treat Reflux
Lately she’s been spitting a lot after almost every feed and cries out in pain. We’ve known she has reflux, but were advised against treating it since she was doing OK and not spitting much…until more recently. After last week meeting with Speech Therapy and Nutrition, they noted she was hoarse and her esophagus could be getting burned so we should begin treating it. We got in the same day with our Pediatrician and began Zantac. We also ordered a pump for her gtube feeds, hoping that would help. Since then things have gotten worse. The Zantac made her struggle to go number two and seemed to increase the spitting. We stopped it and made an appointment for Friday.
Where We’re At Today
We didn’t know it would get to the point where she’s spitting up almost her entire feed and crying/screaming out in pain while being fed through her tube. She shows all the classic signs of reflux. The formula comes up through her nose, she burps it up, and she is coughing a lot. This afternoon I couldn’t bring myself to continue her feed because she was in agony. I’d stop it and restart it. She has to eat! She’s been labeled as Failure to Thrive once before so this is very scary for us. I called right away and got an appointment this afternoon. Sadly, she had only gained about one ounce since July 11th (6 days ago) and she’s supposed to be gaining an ounce per day. We strategized and decided to try Prilosec and Neosure Alimentum, a specific formula that may help. (In the NICU we tried this formula for a few days but saw no progress). Since we’ve been home tonight she’s only had a slight spit, slept through one feed with minimal crying, and cried through the other feed. It’s improvement. I’ll take it.
Why Is She Getting Worse?
We aren’t 100% sure why her reflux has taken such a dramatic turn but we have a few ideas. 1.) When she had her gtube surgery her stomach was moved. The Neonatologist had warned us this could cause reflux since the position of the stomach is different. 2.) Babies can “grow” into reflux. I’m not sure why, but it’s something that you see between 3-5 months we were told.
Why Is This Such A Scary Thing?
Isabella was a micropreemie and needs to grow. She is less than 1% in weight than the rest of those her age. Refusing to eat caused her to be readmitted into the NICU for another month. We later learned she silently aspirates (liquid goes into her lungs) when she eats. This has caused her to be extremely averted to bottles and most things orally. With her spitting up, we are concerned she could be aspirating that liquid. We have no way of knowing if it’s going into her lungs. Without keeping her formula down she could also lose weight, which is super scary for a baby already in the less than 1% for weight. This could lead her to be readmitted to the hospital.
Please pray that she stops spitting and begins tolerating feeds and isn’t in pain.
When It Rains It Pours
On top of the reflux, which was the most critical issue we were facing today, Isabella’s hemangioma (birthmark on her scalp) began to show signs of ulceration (skin breakdown). I had noticed a few dark spots and after some research learned that the large blood vessel filled mark could ulcerate and breakdown. It can also get infected. I sent off some images to our pediatric dermatologist and he called back, confirming it was beginning to ulcerate. We were given the option of taking her to Akron tomorrow but we felt it was best to wait a few days since she’d been through so much and we are beginning a new formula and medicine today.
He said that was OK and ordered a topical antibiotic to apply. We aren’t to use our fingers but a Qtip. Well, I kiss her all over her head and stoke her head and most certainly touch it, so I’ll need to be more careful and use more sanitizer.
We are also going to be treating the birthmark with medicine to make it shrink. 2 months ago we met with him and decided against treating it since it seemed as if it would go down and she only had one. It was only cosmetic and that was confirmed with an MRI. Now, she has 3 more and there’s concern for internal ones. So, for our next appointment we will begin a blood pressure medication to shrink it and the others. She will also have a liver ultrasound to rule out any internal ones.
My heart is super sad, but thankful we have access to medical professionals. Our dads both came over and brought goodies. Doug brought homemade pie, veggies from his garden, and chocolate zucchini bread. My dad ordered us Papa Johns, enough for tonight and tomorrow. They held Bella while I tried to get a grip on everything. Tomorrow we meet with Help Me Grow at home for her assessment for physical therapy and pediatric development. I’m praying it’s a better day and she’s not in pain.
Thank you all for following our journey and loving us well. Please pray tonight goes well.
There are many times I just feel too overwhelmed to write or don’t have enough time. Life moves on and then I deeply regret not documenting an amazing experience properly. I made a promise to myself to simply get one blog post up about our trip to Ireland. So, even if I don’t make it back to share specific stories or breakdown each and every day of the trip, there are highlights.
I always feel a little uncomfortable sharing pictures of traveling. It feels strange and sometimes humble-braggy. That being said, I’ve been posting trips/experiences to my blog and then sharing so those who aren’t wanting to see 1,000 pictures of the castles we stayed at can avoid them. For those who are interested in every details of our trip (What were the free toiletries in the castle room? What did you eat in Belfast? Is Galway really that incredible? Is Ed Sheeran still a big deal?) feel free to follow along on this site!
One last note: Dustin and I value travel and make it a priority in our life. We save our money and work extra hard to be able to afford this luxury. Seeing an amazing trip like this is sometimes a reflection of taking on a cheaper mortgage, driving a less-than-ideal vehicle, or asking for cash for Christmas and saving it for over a year. It’s also a reflection of Dustin working extra jobs and saying “no” to other things in life. This trip was definitely an investment and one we budgeted for! We’ve been planning a trip to Europe for a few years. Today is the first day home and I can honestly say I’m ready begin saving and working hard to make the next one happen! Like Dustin said, “I feel most alive when traveling and having new experiences.” I agree, and blame my family for giving me the travel “itch.”
Why Ireland? A Little Context
A few months ago we found out I was pregnant! This was such an exciting time for us. We had been planning and hoping for this baby! As soon as we found out, we decided it was a sign to use our money we had been saving to purchase a trip to Europe. A babymoon of epic proportions! I had been researching trips and packages for over a year and was torn between Ireland and Italy. After looking at Groupon and comparing pricing/timing, we decided Ireland would be the perfect place to take our unborn baby and enjoy each other before we became parents. (It also helped that I had become obsessed with the movie Leap Year and listened to Galway Girl by Ed Sheeran on repeat for months.) Ireland was the perfect setting for a pregnant momma. It was laid back, gorgeous, and the food was simple.
We booked a 7 night trip through Great Value Vacations that included staying 6 nights in castles and 1 night on the flight to Dublin. I paid extra to make sure I was in my second trimester to avoid getting sick or any issues. I ordered a billion travel books from Amazon and began planning. As I called to confirm our trip I proudly proclaimed I was pregnant to the travel agent and that this was our babymoon!
Unfortunately, a few weeks later the worst happened. I found out I would miscarry our first child. Our little ladybug left us at 8-9 weeks. It was heart-wrenching. One of the worst experiences of my life. I would just cry and cry. This baby was so wanted. I know God had a plan for us. In the midst of the darkness I remembered we had booked a trip. Throwing the baby books aside and having Dustin hide all the baby things in the basement, I opened travel book after travel book and began planning our trip to Ireland, down to the last detail. I made a plan to honor our little one at the Cliffs of Moher and tried to talk myself into the positives. (At least I can have Guinness, right? I can ride a horse.) The positives seemed bleak compared to still carrying our special little baby.
Nonetheless, we carried on and our trip came quickly! Whenever I would want to cry and think of our baby, I would, and then I’d get on Pinterest and look up “Best Restaurants In Dublin” or “Top Things To See In Galway.” It helped tremendously to get my mind off the mourning.
The last few months have been dark. Without going into too many details, our life has been hard. Stress and hopelessness seemed to chase at our heels and it was a difficult time. In one week we heard some great news that brought us to the week leading up to Ireland. Life seemed to be looking up and we were headed on a vacation. At times I even regretted making the reservation because life was hard and traveling seemed stressful. We prayed and decided it was best and that God wanted us in Ireland for the week. I waited to pack until the night before. I was printing our hotel vouchers the day of.
Our Dream Trip To The Emerald Isle
When some people say a trip of a lifetime was perfect, I always believe they are lying. I know that’s a terrible thing to say and feel, but it’s true.
Surely while on that safari in Kenya there was a hiccup and you got food poisoning and stayed on the toilet the whole trip? Oh, Thailand was so wonderful? I bet you missed a flight and ended up wearing the same underwear five days in a row because your luggage was lost. See? I guess I want to believe it wasn’t perfect because nothing in life is and it seems too good to be true. Also, you were in Thailand and Kenya, surely you experienced some small inconvenience. It’d only be fair since you have perfect skin, your husband makes a 3 figure salary, and your children look like angels.
BUT, I must admit, our trip to Ireland was perfect. Perfect in the sense that God met us where we needed Him to meet us and showed us favor and mercy. It was custom tailored to US and in every detail, whether planned or unplanned, it was perfect. The entire time I felt God’s presence. He was so gracious with me and walked alongside us. I felt like He was there with us, experiencing the Cliffs of Moher or sitting at the pub talking with a bartender about the politics in America. Oh, how we tried to honor him. Oh, how I tried to take every minute in, not waste a second. But, in the midst of things, there were small inconveniences. I wasn’t always patient, we struggled to find a good sleep pattern, my skin broke out from the long plane ride, we didn’t spend as much time as we wanted at the Cliffs, and an elderly man in front of me on the longest flight from London to Washington had the worst gas imaginable.
Then there were the moments. The moments where you’re standing at the Cliffs of Moher and can’t breathe because it’s so beautiful and you’re praying aloud to honor the One who made it and you’re crying because you’re exhausted and you miss your baby who died and you wish life would be like this every day but it’s an isolated incident and you’ll be back home in a week and taking out the cat litter and returning calls to confirm your dentist appointments.
And then there are moments you’re walking around Galway and music fills your ears and you’re feeling free and want to move here and escape every day pressure and your husband is buying you a Claddagh Ring and you’re living out your dream life.
You’re walking up to a castle, a CASTLE, with a helicopter pad, and there’s a fancy tea room and you’re drinking tea while looking out at the green grass and laughing because you don’t know how to drink a special drink that’s mini and topped with a purple macaroon that is probably worth $6. (The server brought us mini spoons).
But there are moments you’re tired. You’re tired of driving or spending money or each other and then you feel guilty because you’re in IRELAND, and you get on Facebook and see your mom is hanging out with your nephew and you just kinda want to be home instead of a castle…which doesn’t make much sense unless you believe that family is most important in life and know that life is precious and Jaxson is already growing so fast.
So, yes, our trip was magnificent. It was perfect, it was picture-esque, but not always. It was an investment, and investment in our health, both emotionally and physically, and our relationship. I think we got the most of our money, don’t you? Please enjoy these pictures and small storytelling. Please share in our joy over this wonderful opportunity/experiences. And yes, Ed Sheeran is definitely still a big deal there!
In the morning, we drove into Dublin. Extremely sleepy. We found a parking spot and Dustin told me to plug his phone into the USB charger in the car. Before we knew it, smoke was coming out of the vents of our rental! I yelped and was tempted to jump out of the car. Don’t they blow up if there’s a fire? Dustin realized quick that the USB wasn’t compatible and there was an electrical burning. Luckily, the smoke stopped and all of our electronics were ok!
Brother Hubbard, A Hip Breakfast Joint
We tiredly walked toward Brother Hubbard, a small cafe in Dublin. The place was adorable and filled with yummy pastries and lots of coffee and tea. Dustin ordered a strange cold oatmeal dish and I got a cinnamon “scroll” after hearing the ladies next to us getting one. The tea was delicious. The cafe was quaint and cozy. Very “hipster” with a focus on sustainability. The toilet was re-filled by water that you washed your hands with!
More Cafes? Why Not…Enjoying Cafe Nero in Temple Bar
We were exhausted. It was hard driving on the opposite side of the road in the city while sleep-deprived. We knew we HAD to see The Book of Kells and Long Room at Trinity College. We searched out parking. Unfortunately we couldn’t find a charger at Brother Hubbard so we found a cute little coffee shop to charge our phones for pictures. We decided not to bring out the big ‘ole Nikon for Dublin. It was a lot easier snapping pictures with our smartphones. Cafe Nero welcomed me with warmth and delicious smelling coffee. I ordered a mocha and was delighted that it wasn’t overly sweet and the perfect amount of espresso. We sat and watched groups of people pass in Temple Bar. It was lovely. We laughed so hard at the Stag groups (bachelor parties) who were dressed up crazy. One man was dressed as Snow White and he had 7 Dwarfs with him, pub crawling. Everyone was dressed differently and I was surprised to see so many people smoking! We just took it in and drank long sips of coffee. Dustin laid his head down and tried to take a quick nap while our phones charged. We were immediately proud of our travel savvy selves who made sure we had convertors with us!
Trinity College, The Book of Kells and The Long Room
I had meticulously planned our trip to Ireland. I knew the “must-sees” and the things we could pass on. Immediately, we recognized we wanted to see Trinity College. This beautiful campus in the middle of Dublin is home to The Book of Kells, Ireland’s National Treasure. This is an ancient book that was written by monks. The colorful scripts are beautiful and depict some of the New Testament.
We walked over and made sure to get fast track tickets online on our phones. The tickets proved to be faster than standing in the winding line. The space is like a museum leading up to the Book of Kells and then the Long Room. We were excited to see the Book of Kells but it was difficult because there were swarms of people around the glass enclosure. I can’t even tell you what page it was on, but we saw it!
When we walked into the Long Room, we were in awe. None of the pictures do this amazing space justice. From the sculptured busts to the levels of books, it’s gorgeous. The smell was delicious. It smelled old and like old books. I took video, a thousand pictures, and tried to read the different book covers. Along with the space, there were exhibits of famous writings (Oscar Wilde) and a copy of the Irish Declaration of Independence. We also enjoyed seeing the Trinity Harp, which is a medieval harp. It’s one of three existing Gaelic harps. Unfortunately you can’t just take books off the shelves or sit and read. There were a lot of tourists and it made it hard to relax. We spent as much time as we could before saying farewell and walking downstairs into the gift shop. Although the space is amazing, I wish they had a better crowd control system so there wouldn’t be so many people. But, I get it, it’s a popular place!