Friday, November 21, 2014

What's that thing on her lip....and head?

We had our first experience with a hemangioma several years ago when a friend's little girl developed one on her head.  To us it was no big deal once we learned about what it was. I remember the mother telling us that little kids would always ask, "What's that fing (kid speak for 'thing') on her head?" Kids are so innocent with their questioning but adults can be so judgy.  They came to love this growth of blood vessels and gave it a name as well :) Now it no longer shows and life has gone on normally.  Another child we know had several surgeries for hers but again, all is well.

When Rachel was born she had a bruise near her hairline which the nurse thought was from birth (she had 2 broken blood vessels in her eyes....must have been a traumatic birth for her I guess!). Several weeks later it started to get darker and slightly raised (spot on the right) and then we knew what we had going on. During that time she also developed a second spot on her head (spot on the left) as well as some staining on the lower lip.  I thought the lip was a blister from so much nursing but it didn't go away. It wasn't getting any bigger either, though.  

Then, I had an emotionally difficult day in November: 
-Jackson got out of his room during nap time, went into R's room where she was sleeping in the crib, climbed in with her and brought a bottle of spray and wash with him...
-I had Rachel's 1 month appt where we assessed the hemangiomas, talked about how the one on her lip could be a hemangioma and realized that it could be an emergent condition if it got big and impaired feeding
-Rachel's face was full of baby acne and just looked so uncomfortable

That evening, I called mom and expressed some emotions and fears. My prayer for Rachel from before she was born was that she would know that she is loved by God unconditionally and especially that she will not be concerned with image. Talking through things with mom and a good friend, however, I realized that it needs to be my prayer for myself in how I view Rachel.  Yes, I do worry that these could cause some other damage (esp the one on the lip), but more than that I was annoyed that other people were going to judge her and I would constantly have to answer the question, "What's that fing on her head?" I was worried that people would not think that she is beautiful or they would be so focused on her hemangiomas that they would miss her sparkling blue eyes or the way her lip curls up when she gives a full toothless grin. I wanted her to be able to brush her hair without big lumps getting in the way of the brush. I didn't want either of us to feel like we had to cover them up with hats and bows for the next 5-10 years of her life. 

After several weeks of prayer and some good laughs from the mother who named her daughter's lump, I had finally become at peace with her spots. Jackson started to ask about them and I was telling him that they were God's special mark on Rachel, a special part of what makes her amazing.  He would rub them gently and even kiss them too :)  

Per our physician's recommendation, we monitored the lower lip staining and when it got thicker we decided to get Rachel into a Vascular Clinic at CHKD on Friday the 21st. We were only concerned about the lower lip stain being a true hemangioma and getting large enough to impair feeding.  We met with 3 physicians and a resident who measured, photographed, asked questions, felt them and discussed with each other and me.  

A hemagioma is a collection of blood vessels that can grow anywhere on the body. They are more common in girls and I thought it was less common to have more than one, but today they all said it's very common to have multiples.  They usually grown for up to 12 months (wider and/or taller) and then will recede over the next 5-10 years. They will typically disappear and lay flat but they can also cause pocketing of skin or reduced hair growth in the area. They like to monitor the ones on lips because they can ulcerate and become problematic. The physicians are all doubtful that hers will, based on the current size and look of it. But, we are keeping an eye on it.  It was a reassuring visit in which we decided to treat all of the spots with topical beta blocker cream to reduce the size, coloration and hopefully to slow growth rate or reduce the current size of them.  

So, we'll be on a 2 month course of topicals and then have a follow-up with our team of docs to see how we will proceed from there. Please keep little Rachel in your prayers. Pray that that hemangioma on the lower lip will not progress and that it will not limit her feeding in any way. Pray that it will not become ulcerated. 

Feel free to ask us about those "fings on her head and lip". We're also taking suggestions of names for her three special marks :)  

Thursday, November 6, 2014

Halloween and other October fun

Here are some pics from October! 

pirate fun in Nantucket 
Side-eye with his twin, grandad
rainy day fun!

This boy loves his scooter!
Rachel's first halloween
FIreman Jackson 
The Compound kids, Katie, J, Luke, Caroline and Charlotte
just a little workout in the garage
my cutest nephew and his amazing parents

Rachel is 1 month old!

Sweet Rachel. You are 1 month old and we just love you so much! You are growing like a weed, at 22.7" long (94%) and 10lbs and 9oz (75%). We sure do mange to make large babies and we are so glad that you are growing well. You sleep like a champ, and even at 5 weeks you still really haven't woken up very much. You like to take a long afternoon nap (usually 1-4pm) and then go to bed at 7pm, sleeping a long stretch during the night. Most of your sleeping is done in your crib and the rest in the swing in the dining room when you are fussy. We do enjoy the fact that you don't room-in with us anymore and we all sleep much better! You are wide awake during the witching hour, which makes eating dinner tricky. Back are the days of wolfing down my food in order to care for a little baby. When you are awake during the day, you are very happy and love to watch your brother as he plays, sings and looks at you. He loves to snuggle with you on the couch or in his bed before nap time. You love bath time, even when he accidentally dumps water all over your face! You love taking naps in the Bjorn but aren't a fan of the ergo yet, since we both produce so much body heat; you get really hot and angry and let me know about it! You also don't like to sleep while moving, but that seems more to be a product of your reflux and not so much the movement. The Zantac seems to be working, we think (and we hope!). 

Your hands finally came unfisted and you are starting to grasp things and bring your hands to midline.  You have a strong preference for looking left, so we are working on stretching your neck and getting you to look more to the right. You enjoy tummy time as much as any newborn can, and love looking at yourself in the mirror. When you have had enough of tummy time, you get so worked up that you can roll over onto your back. Now that is as girl who can get what she wants! You are very calm and attentive when we read stories to J and I hope that you will also grow up to be an avid reader like your brother. You have started to pay attention to the world, especially when we are outside. You seem to perk up when the birds start chirping or when the sun comes out. Now that I have started to run again, we can explore more of the world together! 

Thank you for making our lives a little richer and sweeter with your presence. We are grateful for you each day, little R. 

Proud big brother 

Saturday, November 1, 2014

First visit from the McKays/Renzes

Here's a few of our lovely Rachel to start us off...

So many animal prints!!!
This past weekend, we had a lovely visit with some of my family from Delaware and Virginia Beach. Aunt Janis, Uncle Michael and Grandpa came to see the the Coles who finally had a cheerleading-free moment (the girls are so talented and have competitions and practices all the time) and they all came to meet the girl-of-the-hour, Rachel.  She slept through the first half of the visit, giving me a chance to catch up with them and J got to run around with his "friends" (aka Hana and Libby, my cousins) and "that guy" (aka my Uncle Walt). When she woke, everyone got to oohh and ahhh over the first girl in the next generation of the McKay/Renz families.  They also came bearing gifts including cookies (those didn't last long), a cute sleep sack (hot pink, of course) and a hand-made quilt and matching pillow (talented Aunt Janis strikes again).  Grandpa has 3 girls, Aunt Janis and Uncle Michael have 3 girls and Aunt Jeanette and Uncle Walt have 2, so Rachel is in good hands and has lots of women to look up to as she grows.  
GreatGrandpa; Great Aunt Janis and Great Uncle Michael
Great Aunt Jeanette
Cousins Libby and Hana
Great Grandpa with 2 of his 3 great grandkids! Lucky kids :) 

Adventures as a 3 year old

Amidst all the excitement surrounding Rachel's arrival, we have also had a busy season for our not-so-little Jackson! Jonathan's cousin, Erin, asked J to be her ring bearer in her October Nantucket wedding to Kevin. I was SO disappointed to miss this event (I just love their family, plus who wouldn't just adore a beautiful wedding on the shore?), but I sent JB and J off with my blessing to have a great time!  J loved the whole experience: 2 airplanes each way, a tram to get to the second airplane, a ferry boat ride, sharing a bed with daddy, breakfast by a fireplace in the morning, wearing a bowtie. His excitement just exploded out through the phone when I talked to him each night. Jonathan said he was an excellent ring bearer, after the initial moment of panic. He stood at the back of the aisle waiting to go and doing his "hair rub" that he does when he is tired, nervous or shy. But, when his moment arrived, he strode down the aisle, delivered the rings to Andy and then actually took off back down the aisle to Jonathan at the back, possibly almost running over the flower girl on the way :)  J thoroughly enjoyed the reception as well, dancing up on Grandad's shoulders and sticking around until the end of the party! Best wishes to Erin and Kevin. We love you! Thanks for making Jackson part of your special day.

Coming face-to-face with a tiger
stroller ride with Molly
Shark watching
The Larchmont Scooter Gang

Happy 3rd Birthday to Jackson

Jackson, we just love you and can't believe that you are already three years old! It seems like just yesterday you arrived and changed our lives for the better. You are full of energy and love to talk! This time last year you were barely talking and now you love to narrate everything, usually at the top of your lungs! You still have a good fear of strangers but anyone who is familiar to you is treated like your best friend. Speaking of friends, you just adore the kids in the neighborhood.  If any of you hear another kid outside, the doors fly open and you are all outside ready to play. I love to hear you yell, "My friends are here! They are outside! Luke (sounds like Wuke), Katie!!! William!! Sylvie and Iris!" You were so motivated to get outside the other morning that you learned how to unlock the front door...time to install another lock on the top of the door.  I also stepped inside for a few minutes to check on Rachel and came back to learn that you now know how to turn on the faucet and spray everything in sight, on a 50 degree day! 

Physically, you have really taken off in the last few months. Everything you see is made to be climbed on, jumped over or run around.  We got you a scooter for your birthday and you mastered it in a few hours. You're getting good at climbing trees (and dressers...). You are 38" tall (about 50%) and are up in the 68% for weight. You are a healthy boy, which we are so grateful for! 

You love to sing made up songs, eat chicken nuggets and red/orange peppers and sleep with all of your stuffed animals. You think that Rachel is the greatest thing ever. You love reading, playing with cars, taking baths, playing music with dad, baking, running, going to church and playing at the playground and zoo.  Your favorite game is hide-and-seek, any time, anywhere, with anyone. You are still sensitive and hate to be in trouble, but you do push your limits with us and spend a great amount of time in time-out or have your toys taken away as a result of disobedience.  You are learning how to say, I'm sorry and I forgive you (when I inevitably mess up again and again and need to apologize to you).  There are moments when you come up to dad or me and say, "I Love you. You are my best friend." The other morning when I was getting dressed for church, you said, "mom, you're beautiful." Melt my heart, sweet boy.  
On Sunday, October 19th, we celebrated Jackson's 3rd birthday with a Firetruck party. Since I had a 2.5 week-old and JB was working nights, we opted for a small guest list and an easy cookout.  With the help of many friends and family (making grocery store runs to get black icing, delivering food coloring and letting me borrow icing tips), I managed to make this cake which I a pretty proud of! The kids loved playing in the front yard and the adults loved good food and good conversation. Plus, the grandmothers got to snuggle Rachel the whole time, so of course they were on cloud 9! 

A little shy with all the attention 

On Jackson's actual birthday, we woke up and had chocolate chip pancakes. He helped me in the kitchen and managed to eat 1/2 a cup (literally) of chocolate chips. No wonder he wasn't really hungry for the pancakes once they were ready! Doesn't he look grown-up, like a 3 year old??