Personal goals

I am continuing to accept and adjust to my new life focused at home. I feel so busy, with just about every second devoted to my babies' needs, but as far as mental stimulation goes, I am lacking!

I am starting to make to-do lists (I love me some lists!) and set some very small but concrete goals for myself. If I'm not able to work from home to the degree I had been, and even get out of the house much right now, I at least want to keep myself engaged in some activities and projects that I enjoy here when I have a minute to myself (however few and far between!)

Lately, I have been on an organizational kick. When you open the same closets day after day, many times a day, with the clutter staring you in the face, it actually wears on you. So I'm try to clear out clutter and figure out some new systems that will work better for our new "lifestyle".

I'd really like to work on and finish up some projects like our wedding scrapbook (yes, it's still not complete 4.5 years later!) and Brenna's baby book.

I'm also putting together some activities to keep Connor busy. One goal I have is less screen time for him. I used to manage this so well, but these last few months have been a period of "survival" for us, and I'm OK with that. We're opting to not start preschool in the fall (he'll be old for his class with a September birthday so he'll still get 2 years of preschool) so I'm resolving to keep him busy at home without relying on Disney movies so much :) Hopefully there will also be plenty of play dates with friends in our future too!

I want to try to get out a bit more as well. I feel pretty comfortable taking both kids to friends' houses or MOMS Club events, but the thought of going to the store totally stresses me out. I know, I'm being a huge chicken :) So I'm just going give it a few tries, and I know I'll get the hang of juggling two kids!

Team Brenna and the Illini Races!

Yesterday morning was a blur of packing and loading up, and we set out for Champaign around noon, arriving into town close to 2 after picking up Evan's mom. We stopped for a nice visit at my cousin Cynthia's house so her three children could meet Brenna, and then we had a little time to kill, so we were able to drive around the University of Illinois campus and reminisce about our college days :)

Traffic began to pick up as people poured into town for the races last night and today, and we got to my sorority house, Alpha Gamma Delta, about 5 at the same time as my parents and my friend, Johanna. My sorority sisters arrived soon after with all of the awesome Team Brenna t-shirts. I didn't get a close-up picture, but they have a kitten with running shoes on them :)

Some of my best friends in the whole world (Meredith, Jackie, me, Geri and Johanna). Geri, Meredith and Jackie put SO much time and effort into coordinating Run for Team Brenna - THANK YOU SO MUCH!! I couldn't ask for better friends, who have been there for us in every possible way since the day Brenna was born.

Runners began dropping in to pick up their shirts and to meet Brenna. It was so wonderful to see so many of you! Thank you so much for running for our little girl!

Evan is ready to race!

My mother-in-law stayed at the house with Brenna since it was pretty cool outside, while my parents, Johanna, Connor and I went to go see Evan run. He and his friend/fraternity brother Andy ran together. Our group set up at a corner early in the race, and we waited and waited, scouring the crowd of runners (more than 5,000!) for Evan and Andy. Finally we saw my friend Bridget who said that Evan was quite a bit in front of her, and we couldn't believe that between the four of us, we had missed him!

So we headed to the finish line, and we ended up spotting Evan and Andy as they finished the run.

The races finish at Memorial Stadium

There's Evan!

I was so excited to see Evan finish, and we have already decided to run it together next year :)

After the race, we all headed back to the AGD house for the spaghetti dinner!

No detail was left out - from the wonderful food and cookies, to the guestbook that everyone wrote messages to Brenna in, to the adorable little candy favors that Meredith's mother's friend put together (with kittens on them!). 

How blessed we are to have such wonderful people in our lives.

Me and my mom

Me with my freshman year roommate Alissa (Yeah Newman Hall!)

My mom with Geri's and Meredith's moms

My AGD pledge mom, Katheryne, holding Brenna while I'm holding her 8-month-old son Logan (who was CRAZY about Brenna, smiling at her and trying to grab at her!)

It was so fun to get to see several of my friends' babies! 

Brenna and Teagan, who is my friend Renee's 10-month-old

Connor and Teagan made fast friends :)

My friend Lindsey and I were pregnant with our girls at the same time, and they finally got to meet...

What an incredible day!! Our first family road trip was a big success, and both kids did wonderfully. There was a lot of talk about Brenna and all her little friends there last night pledging AGD together...and of course Connor will be living just up the street at FarmHouse :)

We can't thank our amazing friends enough for all of the work they put into hosting this dinner for us, and we are so thrilled to see how many people joined Team Brenna in running last night and today! Thank you from the bottom of our hearts!

Happy Thursday

This week is flying by, very much due to the fact that tomorrow is April 27, which means that the Illini Races are finally here!! I have been incredibly excited for this weekend for a very long time. We are heading to Champaign tomorrow around lunchtime and will be making a few stops for visits before we  arrive at the Alpha Gam house to meet up with all of my friends who have organized Run for Team Brenna! 

I'm planning to watch Evan run in the 5K and hoping that the weather will be decent. And then at 7:30 the spaghetti dinner for Brenna at the AGD house begins! I can't wait to see everyone who will be there and introduce you all to Brenna!

In other news this week, we had another follow-up for Brenna at the St. John's NICU. They are continuing to be pleased with her progress, and though she is on the very low end of the chart, she is progressing upward with her height, weight, head, etc. and not falling off the charts. We've started to add more Alimentum into her diet, and we're at three bottles a day now, with 1 teaspoon added as a fortifier to her milk. So far, so good.

Every day, she just seems to come out of her shell more. She has just taken a liking to her activity mat and has been stretching out while watching all of the toys.

And she has been a super smiley girl!

I love seeing her little personality emerge each day, with all of her sweet expressions, new movements and exploration in her little world. She can't get enough of watching her brother run around, and I know it won't be long until she's trying to keep up with him! Connor is also interacting with her more and more - he'll hold up toys and say "look at this, Brenna" and one night we caught him sitting next to her, talking and holding her foot. We said "what are you doing, buddy?" And he replied, "I'm talking to Brenna!" :)

Speaking of Connor, yesterday we went into full force potty training mode and had quite the successful day! A whole morning of wearing Thomas the Train undies and four successful trips to the potty - yea! Today hasn't been as good, but I haven't been focused enough on taking him to the bathroom - it's true what they say that potty training is just as much training the parent as the child!

Thomas and friends are a big hit around here right now, as well as all of the Cars characters. He's also a big fan of dinosaurs :)

Happy Thursday - I'm so looking forward to seeing so many of you tomorrow!

Brenna's Name

It's a good thing Brenna was a girl, because Evan and I really couldn't think of any boy names that we just LOVED. Nothing came close to "Connor" for us. Girl names, on the other hand, were bountiful on our list!

When we found out we were having a girl, I knew in my heart that I wanted her middle name to be Helen Marie. We considered some other pairings (Jaclyn Charlotte was high on the list), but we leaned toward the Helen Marie combo, and most of the names we liked lent themselves well to this.

I love carrying on family names (Connor William is after Evan's dad, William), and Helen and Marie were my grandmothers.

Helen is my mom's mother, and she passed away when I was a junior in college, in November 2004. Evan and I had just started dating that spring, and so he didn't get to know her very well. My mom, though, always said "Grandma would have liked Evan...he's a farm boy and a Methodist!" :)

Grandma Helen and me as a baby

My dad's mother is Marie, and she passed away in December 2002 when I was a freshman in college, so Evan never got to meet her. One of my favorite memories of her is when I spent the day with her before my birthday party when I was young, and she tried to curl my hair for the party. She raised three boys, so she never got to style a little girl's hair. I remember walking into the house before my party and seeing my mom's expression...and then "ohhh that's...pretty..." as she tried not to laugh :)

Me with my "Nana"

Both of my grandfathers died before I can remember, so having grandmothers was all I knew. They both lived in town, so we thankfully got to spend a lot of time with them, especially for birthdays and holidays. And of course, just general playtime and slumber parties!

My grandmothers have been a huge influence on my life, with their kindness, compassion, love and service to others. It is largely because of my Grandma Helen that I love to give back to the community, and she inspired me (and Evan) to do this wonderful project for the Asbury Children's Supper Hour last year. Both of my grandmas were incredible people who were always there for their families.

Me with my grandmothers at my 8th grade graduation ceremony, 1998

After Brenna was born and had been whisked away to the nursery, and after the doctors had already met with us to talk about her having a skin condition, Evan and I sat in our hospital room and realized we still needed to decide on a name for our precious girl. We ran through all of our possibilities, and it was a clear choice that she definitely was "Brenna Helen Marie."

I am so glad that she will carry on the names of her two maternal great-grandmothers, and I have no doubt that they are watching down on her from heaven!

Me and my brother with my grandma Helen in 2004

Tri-City School's donation to St. John's for Brenna

Evan and I were so excited to get to be at his old school, Tri-City, in Buffalo today for a special presentation. Tri-City's student council organized a "hat day" a few weeks ago to raise money for St. John's Children's Hospital donated in honor of Brenna! They presented the money to the Friends of St. John's today at the end of the school day, and our family and Evan's mom were all able to be there for it.

The members of the student council were glad to get to meet Brenna...

Our family with the Tri-City Student Council...

The Friends of St. John's representative hopped in too (he is at the right of the check, and our family is to the left)

This wasn't the first event that Tri-City has had for Brenna... a few months ago, the school hosted a hat day for the benefit of our family. Some of the Tri-City students who are members of the church that Evan's parents attend went one step further and decorated hats for Team Brenna to wear on that day :)

We are so incredibly grateful for the support of all of the students, staff and families of the Buffalo Tri-City community to both our daughter and to the organization that took such wonderful care of her during those first critical weeks of her life.

THANK YOU TRI-CITY!!

Learning about Love

Two things are certain when you have a baby: you'll never sleep the same again and you'll never love the same again.


Having children has been nothing if not a lesson in love. What love truly means, how much love can change your life, and gaining just the slightest idea of the love that God has for each of us.


Appropriately, the entry in the Sarah Young devotional I'm reading ("Jesus Calling") was about God's love on April 19, Brenna's four-month "birthday". It noted that no matter what our behavior is like, we will never be worthy of God's love - but God will always love us regardless. My favorite line was: "Nothing and no one can reverse it." How reassuring is that?


We sometimes joke as parents that our children can do no wrong. When it comes to love, this is true. The love I have for my children as a mother is so steadfast and unwavering and unconditional. It mirrors the love that God has for everyone he creates - his children.


Last month, my grade school friend Carly, who is currently living in Spain, visited a spiritual destination called Medjugorje, in Bosnia-Herzegovina, with her mother. It is a site where six local Catholics report that they see apparitions of Mary, Jesus' mother, and has become a destination of religious pilgrimages by people all over the world. Carly said her experience there was indescribably amazing.


While there, Carly lit a candle for Brenna, and her mom had a Mass said for Brenna. Carly also gave a picture of Brenna to Mirjana, one of the visionaries of Mary, who takes the envelopes of everyone's intentions up the mountain there. When Mirjana has an apparition, Mary acknowledges the intentions and then they are burned. 


Carly brought us back several things from Medjuforje, including a beautiful little card that says "If you knew how much I love you, you'd cry of joy." From the second I read that, it completely resonated with me! I look at my own children and wish they knew just how completely I love them.


The love I have for my two babies sometimes bring tears to my own eyes. I can't imagine a love so perfect, so unconditional as God's love for us. It surely would cause tears of joy!


The card with that statement is sitting in my kitchen, and I see it every day, whether on purpose or by accident as I walk by it. It always always causes me to reflect, even if just for a split second, and reminds me, no matter what is going on that day, to be patient with my family and to try to show love through everything I do with my children.

Brenna is four months old!

My beautiful Brenna,

Today you are four months old!

It felt like you were a newborn infant for so many weeks and months, and then, in the blink of an eye, you have come out of your shell. You are changing so rapidly now! You are putting on weight more and more quickly, growing longer, trying to sit up on your own (you get mad if we lay you down in our arms and you aren't tired!), watching everything going on around you, smiling (especially after you eat) and getting on more of a regular schedule of eating and sleeping.

You seem like you already know your place in our family, and you fuss if you are left in the other room while the rest of the family is busy running all over :) You like to be carried around upright so that you can be in the middle of the action. You're not even impressed with laying in your bouncy seat while we eat dinner - you want to be sitting up in someone's lap!

Your smile lights up my world! Sometimes it even brings tears to my eyes, seeing you so happy and able to express your joy. You seemed withdrawn and a little uncomfortable for so long that my heart is now bursting at the fact that you're feeling happy and enjoying life.

Brenna Girl - your daddy, brother and I love you more than ANYTHING! We couldn't imagine a more perfect addition to our family, and I am already so proud of all that you have accomplished in just four months of being on this earth. I can't wait to see what you have in store for us in the coming months and years. What an amazing little girl you are!

Happy four months, precious daughter!

A hodge podge of thoughts

1. I don't want to jinx this new trend by announcing it, but Brenna has slept through the night for the last week! She typically goes down for the night around 9:30 or 10 and has been sleeping until around 6 or so, sometimes 7. I didn't expect this to happen so early since she's not even 9 pounds yet, but I'm hoping (praying!) that maybe since God gave us such a high-maintenance girl, he at least made her a good sleeper...

2. This latest sleep development has been especially helpful since I have developed an ear infection along with my sinus infection, as diagnosed last night when I decided to pop into ExpressCare after my ear was full and uncomfortable all day. I'm grateful to be feeling a little better today after starting meds!

3. We finally attempted again to add formula into Brenna's breastmilk, as a fortifier though instead of the meal itself. We tried Similac Alimentum, which apparently has much more broken down proteins in it than regular formula. She's gotten one teaspoon of it added into one bottle for the last two days (starting slow!), and lo and behold, it hasn't affected her! I think we'll try one bottle a day for a few more days before increasing it. Hopefully this will mean that she will gain weight even more quickly, though she's still continuing to gain without the additional calories, weighing 8.6 pounds last night!

4. I am loving all of your questions through Formspring!

5. We have three doctor appointments in the next two days, but I'm actually looking forward to them since it'll force me out of the house :) I'll be glad when we all start feeling better and can get out in this beautiful weather more.

6. Brenna was fussing in her bouncy seat when I was making lunch, so I told Connor to go talk to her so she wouldn't cry. He walked over, looked down at her, and said "what's wrong Brenna?" Those two beautiful babies just make my heart burst with love :)

I'd love to add to the list but Brenna is fussing to be fed - can't deny a girl her food! Happy Tuesday!

Q&As

I get quite a few questions in the way of blog comments, responses to my Facebook statuses and photos, emails and Facebook messages, and it can be difficult to keep up with all these different sites.

So I created a Formspring account for anyone who has a particular question for me (or for Evan. Or for that matter, I can pass along a question to Connor too and get back to you!). Through Formspring, you just submit a simple question and then I can answer it!

So hit me up! What do you want to know? I am happy to try to answer anything you're curious about, whether it's Brenna and Harlequin Ichthyosis, our family, our home life, my photography, my favorite snack. (OK I'll save you the trouble on that - Cool Ranch Doritos of course!)

http://www.formspring.me/cawestlake

Through my Formspring account, I can answer questions really easily from my phone and not have to figure out where to find time to actually sit down at a computer, like I do to log into my blog comments. (Don't get me wrong, I LOVE getting comments and I read every single one, but just can't always respond like I want to!) And quite frankly, I don't get out much, and I figure online interaction is way better than no interaction...So add some excitement into my life and ask me something :)

Educating in public

The first time I took Brenna out in public (to a doctor's appointment) after she came home from the NICU, I was nervous. I was worried that someone would say something rude about her appearance, and I wouldn't know how to respond.

No one said anything rude thankfully, but there was a lady in the waiting room who leaned over to see her and asked how old she was. I responded, and she just kept staring, so I felt compelled to elaborate that she has just come home after a stay in the NICU and how thrilled we were about it. The lady just nodded and kept looking at her, and I thought to myself, "either ask a question nicely or stop staring!"

However, I wasn't sure what a "nice" question would be...and I still don't know. How do you politely ask about someone's appearance without seeming judgmental or condescending?

I have given a lot of thought about the way I would prefer people to inquire about Brenna's skin. I know people are naturally curious. I know most people are just interested in learning about why her skin looks different.

Obviously, Evan and I want to educate others as much as possible about Harlequin Ichthyosis and our daughter. That's a huge reason why we have this blog!

Evan and I believe that if people are truly genuine and kind and interested, then any way they phrase a question about her will not be offensive. I would much prefer someone to ask a question in a kind-hearted way than to simply stare.

Another thing I have struggled with is how to explain about her condition to someone wanting more information. To describe it as a "skin disorder" sounds so nonchalant and inadequate to what we have gone through since her birth and what she must deal with for the rest of her life. In many people's minds (mine included, at first!) a skin disorder isn't life-threatening, doesn't completely change your life, and maybe will even "clear up" over time.

I really enjoyed hearing how Hunter prepared little cards to hand out to people explaining Harlequin Ichthyosis, and I have considered making similar cards with a link to this blog if anyone is interested in learning more. I feel such a sense of purpose to be an advocate for my daughter and to educate others so that it might make her life just a little bit easier. I believe that when people are educated about something, they are less likely to judge, less likely to ridicule.

This experience has definitely opened my eyes. Instead of trying to avoid looking at someone who is physically different in an effort not to stare and appear rude, I make eye contact and smile. I initiate conversations with other mothers more. And I never hesitate to tell parents how adorable their child is.

If you're not sure what to say to someone about their child, I know personally that a simple "She is SO CUTE!" will never fail to make my day :)

TGIF

This week, the days reminded me of the movie Groundhog Day - everything was very ordinary and routine, and nothing exciting or different happened (well besides the staph diagnosis, which really only meant more bleach baths and more medicine!)

We did get out of the house a little before the rainy weekend hit...

on a walk, wearing an adorable hat that a blog reader sent us!

Brenna is like a whole new baby this week. Up until now, she has been extremely sensitive to movement, getting upset every time you would shift or move while holding her, and only wanting to be swaddled and held close.

Now she wants to be carried around, held upright so she can check everything out, and even sits in her bumbo!

I've also been trying to get her used to lying on her back and her sides, and she is showing a little more tolerance to this than usual. I'm putting little toys in her hands to help her open her fingers up more too.

We are absolutely loving her new alertness! She's so smiley now, especially when I said "Hi pretty girl!" Gets a big ol' smile just about every time :)

So far, she is responding really well to her antibiotics, so hopefully we can kick this staph infection and figure out how to keep her healthy! We have noticed that Brenna gets really sick every time we go out to dinner...Last staph infection came on a weekend when we had a dinner date, Friday night we celebrated Evan's birthday out, and then she got staph again. And NICU Round 2 came the day after our Valentine's Day dinner.

Lunch outings, however, don't seem to affect her...so we'll have to take that into consideration next time we plan a date! :)

Staph is Back

We received a call from the nurse yesterday to let us know that Brenna's cultures are positive for staph again. UGH.

Fortunately, she is responding well again to the antibiotic clindamycin, and the white bumps on her skin are gone now.

From Easter morning (you can see the tiny cluster of white bumps right in the middle of her arm)

She isn't acting sick and never got a fever, so my guess is that the staph is only on her skin this time, not in her blood. Dr. Conlon advised us to continue doing bleach baths and spraying her bath and other things with bleach solution. He reassured us that there is no way to know what causes this - her skin just isn't equipped to ward off infections like this. He was encouraged that now that she's older and has gained more weight, she can better fight these things.

In addition to Brenna's staph, Connor and I are both dealing with a cold/sinus infection thing the past couple of days, and I'm really worn out. I'm just hoping Evan doesn't get it, because there is nothing worse than "The Man Cold." (Ladies - you know what I'm talking about!!) :)

Hopefully we will all be on the mend very soon!

Smiles!

Brenna's first smile that I caught on camera :)

Rest and Recuperate

Over Easter weekend, we noticed some changes in Brenna's skin that were similar to when she had staph...just not as severe. We also discovered some raised white bumps on her arm at Easter brunch that we were concerned about.

So I texted a picture of them to her dermatologist (yes our doctor is that awesome!), and he gave us a few things to try (bleach bath, topical antibiotic ointment) and then we went to see him yesterday morning. By then, the bumps had become more yellow and less raised...but there were more of them spreading to her back shoulder areas at that point too. He took some cultures of the concerning areas, so we're waiting to hear on those, and we also started giving her antibiotics again just in case.

Thankfully she is doing really well today and has slept great the past two nights, only waking once in the middle of the night to eat. (She is also now 8.3 pounds, up from 8.1 pounds last Thursday!!)

Hopefully the cultures come back negative for any infection. Dr. Conlon said that bumps like that can form sometimes when the skin grows too fast, so we're hoping that is the case, rather than staph that is hanging around.

Also yesterday Connor woke up with a drippy nose and around lunchtime, I noticed he was running a fever of 100.8. Between Connor and Brenna, we are master temperature-takers because Connor has febrile seizures. When his temperature spikes too quickly, he has a seizure. Fortunately he's only had three of them (that we've seen anyway), but it always is pretty scary for me. The first time it happened, I had never seen a seizure happen before, and we were terrified.

Anyway, so I've got two sick kiddos on my hands, but thankfully both seem to be doing much better today. Brenna is even wanting to sit up in my lap and hang out with us while we play. She doesn't want to miss anything going on now! After such a busy weekend, I'm glad that we're able to spend some time at home and rest this week so that my babies can feel well again.

Brenna's First Easter

We had a wonderful weekend of celebrations, with Evan's birthday on Friday and Easter yesterday!

First, I must say Happy Birthday to the most incredible father and husband...we love you so much!

Our Easter celebration was refreshing and hectic all rolled into one. Connor was thrilled with the Easter Bunny's stop at our house and had so much fun hunting for eggs and digging through his basket of goodies.

We went to mass at our church, Christ the King, to kick off the day. Brenna was due to eat when we arrived, so Evan fed her in the car while Connor and I went in to find seats. As the mass began, the choir began to sing the song they do every year "Jesus Christ has risen today" and while I find it so moving each year, this year was particularly emotional for me.

I looked around at the packed church, and it made me think of the last time our family was all dressed up attending a holiday mass - Christmas Eve - and I thought about how far our family has come since Brenna was five days old. I felt such a weight of all that we have been through these last few months, and I got teary-eyed.

At the same time, I was struck by the magnitude of Jesus' sacrifice for all of us - so much greater than I could ever comprehend. I am not even sure how to describe it, but it was definitely an emotional moment for me. Everyone around me was probably wondering why I was wiping away tears!

My beautiful family before our first Easter mass together :)

It was so wonderful to get to attend Easter mass with my whole family, and so many people got to see Brenna for the first time. It was fun to show her off in her Easter dress :)

After mass...

Following church, we went to my parents' house for brunch, and Connor got to hunt for more eggs...

Around 1, we headed to Evan's grandpa's house in Ashland for a gathering with his whole mom's side...and for more egg hunting! (or in this case, just candy)

It's a big spectator sport for the adults :)

Connor's cousins on the hunt

Evan and his dad - notice a resemblance? :)

What an incredibly beautiful day it was, and we left our last get-together in really good moods. I felt so blessed as I reflected on how far our sweet girl has come from Christmas to Easter!