Hemangioma Update

A lot of people have asked how Ashlyn's birthmark is doing now that we have started this new medicine. We are very, very pleased with the progress we have seen so far! We go back to the doctor tomorrow for our first follow-up. We are anxious to hear what they have to say! Here is a progression of her birthmark in photos .

At the hospital

Getting worse at home

At it's worst

Day before beginning treatment

After 2 doses of Propranolol

Day 6 of treatment

We were very hesitant to start a medication that is primarily used to treat heart conditions. But after much discussion with multiple specialists, we decided that the minimal side effects (low blood sugar and low blood pressure have been the only reported potential adverse effects) were worth the possible benefits. We are very pleased with our decision so far and feel very optimistic that it will continue to improve!

A week of doctors appointments

This week flew by with 3 doctors appointments. We had a check-up with our Pediatrician on Tuesday and got a very good report. Ashlyn weighed 6 lbs 13 ounces and he was very pleased with her growth and progress. We don't go back to see him until her 2 month shots :(

We saw a Plastic Surgeon on Wednesday who specializes in hemangiomas. This picture was waiting to see the doctor.

He recommended that we start a medication that will stop the growth of the tumor and hopefully start the involution process sooner. He was very optimistic that with early treatment, the birthmark would be undetectable by the time she starts kindergarten. If we did not do the medication, there is risk of scarring, ulceration (which is very painful) and no telling how big it would grow during the next 6-9 months. We were hesitant to start the medicine, but he reassured us, this is the best route to go for Little Miss Mae! They did a full on photo shoot of her to monitor the progression/regression of the birthmark.

When we called our Pediatrician to tell him about the medicine, he recommended that we follow-up with a Cardiologist in regards to the heart murmur they heard in the NICU, before starting the medicine. The medication is used to treat heart rhythm problems, but also has proven to have great success with hemangiomas.

So Thursday we saw a Pediatric Cardiologist for an EKG and an echocardiogram. Our insurance company is loving us, I am sure!! Waiting to see the doctor.

Echocardiogram

EKG

Ashlyn measured 20 inches long and weighed 6.15! She is growing like a weed! We found out that she has two small holes between the left and right atrium in her heart. It is called an atrial septal defect and is very common in children especially preemies. The doctor felt very confident that the holes would close on their own within the next 2 years. She will have no problem what so ever from this small defect. We wouldn't have even known it was there if we hadn't done the echocardiogram. The doctor told us that she is not worried about it and weren't allowed to either. A little easier said than done, but she was very very sure that it would be closed by our next appointment! She was also very reassuring that the medicine the plastic surgeon was recommending was safe for Ashlyn and she has seen really good results when it is used to treat hemangiomas. So we felt pretty good about starting the medicine. Getting her to take the medicine is a different story! It isn't easy getting a 6 week old baby to swallow something that doesn't taste very good! The nurse told us not to mix it with milk, but that is the only way we can get it down her...3 times a day! I noticed an obvious difference in her birthmark the next day, but I am not sure if it is due to medication or just fluctuation in the color. Anyway, we are very optimistic.

On a sad note, Grandpa B, Karen's dad, passed away this morning. My dad, Karen and Sarah we able to be with him yesterday. He didn't get to meet Ashlyn. We are happy that he is with Grandma B now and he can eat all the apple pie he wants, as Sarah said!

Ashlyn got to officially meet her Aunt Teresa and was showered with love and kisses! I can tell we aren't going to have a shortage of baby sitters!
Here are a couple more pictures from this week.
Hanging out in my stroller (in the house because it is too hot to go for a walk)

Waiting on my Gpa to come see me

39 days old


We have a relaxing weekend planned with some visits from family and friends and celebrating Chance's first Father's Day! How exciting!

1 month old!

I can't believe one month ago today our sweet angel graced us with her presence. It has been an emotional whirlwind from excitement, to worry to extreme happiness and everything in between. We didn't have time to prepare for her arrival...physically, mentally or emotionally and I almost think that was a good thing. We didn't know what to expect so our reactions and responses have been straight from the heart!


We had an appointment with a pediatric dermatologist today to have Ashlyn's hemangioma looked at. She felt confident that it was in fact an infantile hemangioma with superficial and deep components. She told us that the superficial portion (the raised red splotches) would likely stay the same as it is now. It may raise a little more, but shouldn't get any larger. The deep portion (the underlying bruised part) could begin to raise, but it was a good sign that it is still relatively flat. She told us it could possibly get worse over the next 6-9 months but then would start the involution phase where it starts going away. That could take up to 5 years to completely resolve, but there should be a noticeable difference in 1-2 years. If there is any redness or texture changes remaining, they are easily treated with laser. One of the treatments available that slows the progression and possibly initiates the involution phase sooner is a low dose oral steroid taken for 1-2 months. Chance and I aren't anxious to put Ashlyn on any medications, but will consider it if need be. We are going to follow up with her in a week to monitor changes. We also have an appointment with a pediatric plastic surgeon next week for a second opinion. We want to be proactive with the management of her birthmark so that it doesn't leave any long term scarring since it is on her face. She is absolutely perfect and we think her beauty mark is a great place to land a kiss!
Mom and Ashlyn waiting for the doctor

Dad and Ashlyn after the doctor's appointment

Ashlyn weighed 6 lbs 4 ounces today at the doctor's office. She is only taking 3 bottles a day now and we hope to make it to all breastfeeding very soon. She sleeps in a co-sleeper next to our bed at night. She is a pretty good sleeper, but gets a little fussy when she starts getting hungry! During the day, she naps in her princess crib, her pack-n-play, her lounger or our arms! She absolutely LOVES to have the lullaby's playing from her pack-n-play. I am going to try and get a video of her being fussy and then relaxing once the music starts. It is amazing!
Hanging out in her pack-n-play, listening to the tunes!

Chance calls this her "vogue" pose...she strikes it frequently!

Mazzy guarding the princess crib

She loves bath time (or so it seems). Here are a couple of pictures. Chance and I don't quite have it down yet, she is way too small for all of the bathtubs out there so we just use the frog sponge in the bottom of the tub. I mostly hold her while Chance hoses her down.


Little miss Mae (as her dad calls her) is truly a joy in our life! She has only been here for a month, yet we can't imagine life without her! Can't wait for everyone to meet our sweet angel!

Getting Settled in at Home

Well, after spending 3 weeks in the NICU Ashlyn was ready to come home and we were more than ready to have her home. But first, here are a few more pictures from our last week in the NICU.
Ashlyn passed her hearing screen!


This was our first time to give Ashlyn a bath!

Reading a bedtime story



Ashlyn's first roommate, Sarah! I talked to Sarah's mom and she went home a couple of days ago!

The night before we went home, Chance and I spent the night at the hospital with Ashlyn. They call it "rooming in". They unhooked all of the monitors and did her evening assessment. She weighed 5 lbs 13 ounces that Monday night! Once the nurse was finished with her, she turned her over to us. We had a small hospital room with 2 beds and her crib. We were responsible for her care from then until we left the next day. We gave her a bath, did all of her feedings (she was taking 5-2oz bottles and was breastfeeding 3 times) gave her vitamins...YUCK and everything else that goes along with having a newborn! We got a little sleep that night, but were mostly watching Ashlyn sleep! The doctor came by the next day around noon and checked on us. She felt that Ashlyn was ready to go home! The newborn photographer stopped by the room for a mini photo shoot and we found out that Ashlyn is quite the model! She was posing it up. We got some really great pictures.





Once we got packed and loaded up and received our last minute instructions from the nurse, we were ready to head home. I was excited and a little anxious...we had been there so long and I had gotten very comfortable with having the nurses on standby. I don't think my motherly instincts had kicked in because I always had backup! I was a little emotional as we loaded up into the car to take our sweet angel home. She was so tiny in her car seat. I sat in the back and held her head in place as Chance drove ever so cautiously.



We made it home safely!
Nenna, Chance's mom, had this stork delivered to our house! It was very cute!



My mom, Mimi, spent a couple days with us to help us get settled in. She cooked, cleaned, did laundry, held Ashlyn a little (a lot), grocery shopped, bonded with Pip and was all in all a big help! And it was reassuring having someone else around. Her furry sisters, Mazzy and Pip, are handling the new addition very well. Mazzy is very interested in every peep Ashlyn makes. She sleeps by her crib at night and watches her every move! Pip isn't too bothered by her. They both love being in her nursery when we are in there. Here is a picture of them meeting the little sister.

Pip sleeping next to Ashlyn's pack-n-play

We are settling into a routine and it is so nice having our baby home. She eats at 3, 6, 9 and 12 and sleeps the majority of the rest of the time. She fusses a little with her diaper change and when she gets hungry but is honestly a very good baby. Ashlyn is our centerpiece when we sit at our table! She loves the baby lounger and we don't mind staring at her while we eat!

We had a Pediatrician's appointment on Wednesday. Ashlyn got a good report. She was up to 6 lbs! He didn't hear her heart murmur and was confident that if she does have one, it will go away on it's own. Her jaundice is better and her anemia is likely improving, although he didn't want to stick her foot to check it. It is pretty common for preemies to be anemic the first month or so after birth. Ashlyn has a beauty mark on her right check called a hemangioma. Our Pediatrician referred us to a specialist to monitor the birthmark, but doesn't think it should cause any problems. These types of birthmarks are very common (about 10-15% of babies have one) and usually get worse over 6-9 months and then completely go away over the next couple of years with little to no evidence that it was ever there.
Ashlyn has had several visitors since she has been home and many more expected! Pa J (my stepfather) and her great grandma Sally came by to say hi and Ashlyn's Auntie Sarah came over and brought lunch and hung out with us one day.
Ashlyn with her Mimi and PaJ

PaJ holding Ashlyn

4 generations
Great Grandma Sally, Mimi, Mom and Ashlyn

Great Grandma Sally

The Pediatrician recommended that we keep her at home for the next 6 weeks or so until she has a chance to grow a little more. It is good that it isn't cold & flu season, but she is still very suseptible to everything! We are going to do our best to keep her healthy!
Ashlyn and Mimi reading a bedtime story

Ashlyn after her first bath at home...the bath part was a little too hectic to pull out the camera, but here is an after shot! We all survived, but man is she slippery!

I will try to keep the blog updated more regularly once things settle down a little more and we get caught up on everything. It is amazing how time flies. I can't believe it will be 1 month tomorrow that our little angel graced us with her presence. She truly is a miracle and we feel very blessed to have her in our lives!