Thursday Thoughts, Vol. 3

What's going on around these parts...

1. At last weigh-in, Brenna was 9.97 pounds....so close to breaking into double digits! She gained almost half a pound in a week, which is an insane weight gain for her. She went through a growth spurt over the weekend, with a couple of days of eating every three hours around the clock. As much as I want her to gain weight, I'm not a fan of that schedule at night :)

2. We had two doctors appointments and two playdates set up this week, and every single one had to reschedule/cancel. It's going to make for a crazy week next week, when we will have four doctors appointments to get to. Today, however, I am relishing spending this rainy day indoors loving on my kids.

3. We are getting family pictures done in a few weeks, and I can't wait! I am still working on finding an outfit for Brenna...I have something very bright and colorful in mind, but actually finding exactly what I want her to wear is proving challenging. These will be our first family portraits since Brenna joined the family, and I am so excited about putting them up all over the house.

4. This weekend is the 6th Annual Pat Sheehan Golf Outing at Edgewood Golf Club in Auburn, which this year will be benefiting Brenna. Evan will be playing in the outing with some of his friends, and I am planning to take the kids out at the beginning of the event (lunch). I am looking forward to it!

5. A few weeks ago during one of my photo sessions, one of our little photo subjects, who is 4, presented Brenna with a beautiful card she drew and some change to be donated to FIRST for Ichthyosis Awareness Month....coins that she had donated from her own piggy bank. I was definitely trying to hold back the tears! (and not doing a good job...is it unprofessional to cry on the job? :) )

6. Ever since I posted about struggling emotionally and resolving to focus on the present, I have felt much more positive. Whether it's due to having an outlet through the blog (and the encouragement I receive from readers!) or actually taking each day at a time again - or both - it's working. And I love feeling good again.

7. Last week we realized that Brenna didn't want to take a bottle from anyone except Mommy and Daddy, and with our upcoming St. Louis day trip, both of our moms came over to "practice" feeding her multiple times before Sunday. Finally the day before we left, Brenna decided that grandmas were OK too - thankfully! I hadn't realized that babies get stranger anxiety so early, but Brenna is getting very attached to her parents (can't say that I blame her - ha! ). She even has a "stranger" cry that I can recognize. Her speech pathologist said she seems very advanced in her social awareness, with her looking at whoever is talking, always aware of who is holding her and who is around her, and cooing/making noises ...We joke that she'll be three years old, talking everyone's ear off, and people will think she's an incredibly advanced 10 month old because she's so little :)

Happy Thursday!

So big, so pretty

Someone woke up from her nap in a good mood today...
*please excuse my camera cover slightly blocking the shot, as well as my super annoying baby voice. thanks :)

Memorial Day Weekend

 Our weekend in pictures...

Temps got pretty hot this weekend, which gave me cause to get out and wash some of Brenna's new 6 month summer outfits!

On Friday, we broke out Connor's water table, and he had a blast playing in the late afternoon while we waited for Daddy to get home from work.

We had fun helping at our neighbors' garage sale, and we made a whopping $32.50! Which was completely to be expected because we didn't have much, and we definitely price things to sell. We have always put unexpected little chunks of change like this into Connor's savings account, which we plan to turn over to him when he gets to college. We are guessing that after it adds up over all these years, he might be able to buy three whole textbooks with it...

Due to Evan's schedule this week, I did two of Brenna's baths by myself. I felt like SuperMom :) She didn't seem to mind though...

 On Sunday, Evan and I took advantage of the ultimate treat - a whole day of just the two of us! We headed down to St. Louis in the morning for the Cardinals game...

 It was a hot one, but thankfully, our seats were in the shade. And we saw a good win against the Phillies!

I had almost forgotten what it was like to spend a day together without kids :)

Today, we celebrated Memorial Day with a last-minute lunch cookout with a few friends. We are excited because several of our friends are going to join us in the ranks of parenthood this summer and fall, so Connor and Brenna will have some new playmates soon!

It was one of the best weekends we've had in a long time!

Thursday Thoughts, Vol. 2

Things have been rather ho-hum (well, as ho-hum as it gets for having two little ones...) around here lately, which is definitely a good thing. Evan and I got out of the house together by ourselves not once, but twice this week - we attended the Illini coaches tour at Southwind on Monday and Evan's "graduation" from the Leadership Springfield program last night at the Hilton. It really made me feel like things are getting to normal for us, and we are feeling more and more comfortable leaving both kids with our parents (though Brenna seems to be on a parent-only kick at bedtime and has thrown quite a fit for grandma the last couple of times she's been babysitting!)

I definitely am beginning to feel like it's summer, and our calendar is starting to fill up, especially on the weekends. I am determined not to get too overloaded like I have the tendency to do, and I want to make sure we leave enough days open for spontaneous family time and relaxing.

We are so looking forward to a three-day weekend, which includes a trip to St. Louis for the Cardinals game on Sunday for me and Evan, thanks to some wonderful and generous friends of ours! 

I'm also partaking in our friend/neighbor's garage sale, which should be interesting. Not only do I have Connor and Brenna to try to manage, but she has a three-year-old and five-week-old twins. Call us ambitious :) (thankfully, she has rounded up some family members to help out!)

So I'd love to stay and chat, but miraculously both kids are sleeping at the same time, so I need to be productive! Hope you all have a wonderful Memorial Day weekend!

Touch

Since Brenna's birth, we have been privileged to connect with so many wonderful people and families who have shared their incredible stories with us - both those living with ichthyosis and some with other varying experiences and situations.

One especially enlightening and powerful blogger is Carly from the wildly popular blog Tune Into Radio Carly, in Australia. Carly has a type of ichthyosis called Netherton's Syndrome, and she writes very candidly about her experiences and feelings about everyday life with ichthyosis. Her posts are very thought-provoking and honest and cause me to reflect on the way we are raising both our children.

Recently, Carly wrote a post about "skin hunger" and the power of touch in someone's life. As she notes, "...of the five basic senses, touch is the only one deemed essential to human life."


I think there is a tendency to shy away from touching Brenna. We don't want to cause sickness, we don't want to hurt her delicate skin...and yes, we do tend to want to minimize the invasion of Aquaphor all over our clothing, furniture, everything.

But as all babies do, Brenna loves touch. From the day she was born, with those thick plates of skin that appeared so painful (though we'll never know how much her original skin actually hurt), she has craved human touch.

We are a very "touchy" family. We snuggle up to read books, we hold hands, we hug and kiss throughout the day, we tickle and we touch. We have always been this way with Connor, and we want there to be no difference between Connor and Brenna when it comes to touch.

Only time will tell how others will treat Brenna as she grows older. Will people be nervous to shake her hands because her skin looks so different? Will other children fear "catching" her condition at the swimming pool or playground?

The only thing we know for certain is that she will never experience lack of touch in this house!

The other night, Evan and I were taking turns kissing Brenna on the lips and cheeks (which are just as smooch-able as they look, if you were wondering!) She would break out into a big gummy grin after every kiss, and it made us laugh along with her each time. I will hang onto that precious memory forever :)

I don't think there is anything that bonds parents and children together more than positive physical touch. No matter what life throws at us, or how old the kids are, I will never stop kissing and touching my kids. And now, because of Brenna and her Aquaphor-covered face, I will have the softest lips around...double bonus!

Brenna is FIVE months old!

My sweet Brenna,

This day caught me by surprise. How are you five months old already?! I swear I just did your four month post!

While I know I will look back a long time from now and feel wistful at these baby days, right now I am excited as you grow older and more independent. You are getting very close to being able to sit up on your own, and everyone comments how impressed they are with your core strength and your head strength and mobility.

You are happiest when someone is holding you and interacting with you...though from the day you were born, you have loved interaction. You obviously get this from your father, who talks everyone's ears off :) You don't like to be put down, which is not very conducive to me getting anything done around the house! I think we are going to become very good friends with our baby carrier and Moby wrap.

You are just starting to wear some 3-6 month clothes! You haven't been eating as well lately, but I think it's a combination of your latest infection and the stage you're at with sucking and swallowing. Hopefully we can get you to 10 pounds very soon!

"Aquaphor: nom nom nom!"

Your brother is talking to you a lot more and showing you toys, and you absolutely love to watch him, especially when he gets wound up and runs around the room. He kisses you on your head before bed at night, and it makes me melt every time.

We love you, precious girl! You are sure keeping our lives interesting, in the best way possible :)

Happy Friday

It's Friday, it's beautiful outside, and I am in a GOOD MOOD!

So is Brenna.

My aunt watched Brenna this morning so I could run some errands and go grocery shopping with just Connor. Connor is an amazing shopper. I would shop with 10 Connors. Brenna? Not so much. And it was also nice to give me some 1-on-1 time with my boy. We checked out the fish at Meijer, and he was in heaven :)

This week has been so off from our usual "routine" (hence the lack of blogging.) We stayed out at my in-laws' farm Monday through Wednesday while work was being done on our house. Though the packing up was stressful - trying to make sure we had everything we needed for both kids! - actually being out there for two days was almost like a little vacation! Brenna even took a really long nap one day, and Connor and I got to play outside together with no worries of housework or photo editing. Evan's sister is home from college, and with the way his parents' work schedules are, there was at least one other person around most of the day, which made for stimulating adult conversation!

 (snoozin' with Grandma Westlake)

Brenna's skin is back to normal again with the antibiotic treatment, so hopefully it stays that way! Both this infection and her first staph infection came a few days after she got her vaccinations, so we're also wondering if there's a correlation there now. We might have to try some different steps with the next round of shots to kill off any bacteria...

Brenna had a bunch of appointments this week. She got her ears cleaned out, which we noticed makes a big difference in her hearing and her "talking." She also saw her occupational therapist, who created this handy little homemade "splint" for her hands.

Brenna typically keeps her fists clenched with her thumb in between her first two fingers, so we're working on building the habit of putting her fingers in a more "normal" position, in addition to opening more.

We have a busy weekend ahead, with a graduation ceremony to attend, cookout with neighbors, photo session and of course family downtime - all of which I am really looking forward to! :)

The present

We are treating Brenna for staph again.

We are frustrated and concerned and trying to figure out why she either can't kick it completely or continues to get it.

 I have also been struggling more emotionally lately than I ever have since Brenna's birth and am trying to figure this out as well. I think that I am too focused on the future and not the present. Truthfully, I am worried about her future. I know it's ridiculous, and I need to stop wasting my energy on worry.

From the second she was born, I began to live in the present, taking each day as it came. I want to challenge myself to live in the present again.

The future will come soon enough. For now, I will focus on the present...



Happy Mother's Day!

I've read this quote several times recently, and I love it...

"The only thing better than having you for a mom is my kids having you for a grandmother."

I know this is exactly how Evan and I feel about our mothers!

From our wedding day, 2007

Happy Mothers Day to my mom and mother-in-law! We all love you so much!

I'm a Mom

I didn't interview for my position;
I was hired on the spot.

Wiping my supervisor's nose and feeding him applesauce is in my job description,
and I'm OK with that.

I get no holiday time, no days off.
I can't call in sick and stay in bed all day.

I never knew the true meaning of tired until I landed my current job.
More than six consecutive hours of sleep - deep, restful, peaceful sleep - is a very distant memory.

Vacations are no longer relaxing,
But twice as much fun.

I'm the CEO, CFO, and COO,
but my salary is that of a volunteer.

My bonuses are paid out in the form of kisses, cuddles,
 and occasionally sleeping "through" the night.

I can't imagine a job more exciting, stressful, demanding or rewarding.

I'm a mom.

Happy Mother's Day weekend to all of the incredible mothers that I know and love...Here's to you and all that you do for your children!

Our week in pics

After my previous post was a little on the "heavy" side, I'm keeping things light-hearted today with some photos from the week. It is the weekend after all!

Last Sunday we picked up a playhouse that Evan's aunt and uncle let us have for the kids to play in. Connor loves it, and Brenna's long morning nap has allowed me to play outside with him a little more this week.

He also got to spend some time with some of his cousins who he adores. He was in heaven with all the attention they were giving him :)

More cuteness from Brenna...

She may be behind on a lot of things, but sitting up is one thing she seems determined to do on time!

Connor has decided he's totally over this whole nap thing, which I was not prepared for. I had visions of him napping up until kindergarten, and both of them napping at the same time together in the afternoon. Call me clueless :) So now we've implemented "quiet time," where he stays in his room playing with his toys and reading books in his bed. And it's going really well. One day, though, he ended up crashing on the living room rug at about 4:00!

My loves :)

Brenna got fussy when we were eating dinner one night, so Evan started dancing around the kitchen with her, singing "big girls don't cry." She absolutely loved it, and it melted my heart to see them dancing!

I've been holding onto my goal of doing more activities with Connor, and less TV/movie time. We only watched one Disney movie this whole week! One day I got some beans and rice out for him to play with in the kitchen, and it kept him happy by himself while I did dishes for a good half hour...

Happy weekend all!

The Bad and the Ugly

Looking back at this blog, I realize I have been very guarded in talking about my negative emotions throughout this whole experience. I think mothers have a tendency to feel guilty for even having the slightest negative feeling...let alone putting it out there for the whole world to read about.

I have always wanted to document this journey - Brenna's story, our love for her, and our faith in God's plan for her. But I always want to be real and honest. And it wouldn't be that without chronicling the struggles and the negative emotions too.

For the most part, I feel strong, positive and genuinely very happy. But sometimes I don't. I have my days and my moments...of anger, of resentment, of grieving. And then of immediate and overwhelming guilt for even feeling like that in the first place.

So I'm putting it out there. Yes, I realize that some of these feelings are unwarranted and maybe I'll feel silly when I look back at this. But these are emotions that I have occasionally felt since bringing Brenna home or thoughts that sometimes cross my mind... (And maybe there are other people in similar situations who are feeling similar emotions - now you know you're not alone! :) )

-I see announcements of boy or girl and photos of growing baby bumps, and I feel a twinge of sadness that those days are over for our family.

-If I watch shows like Baby Story on TLC, I cry my eyes out at the joy and elation that those families are experiencing...emotions that were not present in our room when Brenna was born, that were drowned out by confusion and anxiety.

-I see facebook posts from parents complaining about their child's ear infection or teething discomfort, and I want to shake them and tell them how lucky they are that that's their baby's biggest health concern. (because of our experience, yes, but more so because of so many families we have met and heard from whose children are fighting huge battles every day.)

-Not every day, or even every week, but occasionally, I want to throw something at the wall when I notice a new grease stain on a nice shirt that I have already washed and dried, thereby ruining the shirt. I feel a passing frustration in the evenings when we do bleach baths, and I have to change clothes to avoid getting bleach spots on my jeans. I feel torn some mornings, wondering why I even bother to get dressed when I'll probably end up with Aquaphor all over my clothes.

- I'll notice a teeny bopper show on Disney with the actors with perfect hair and perfect skin and perfect makeup and perfect bodies...and my heart breaks thinking about Brenna comparing herself to that, both just in general as a girl, and as a person with skin that society has deemed is most definitely not perfect.

-I see other local photographers participating in community auctions and events, and launching new business changes and projects, and I feel completely left in the dust. While I'm enjoying getting to take photos on a limited basis, I'm not sure that my business will ever get back to the level that it was, or that it was heading. My plans and priorities have changed, but still, there is a part of me that is disappointed about that.

-Every now and then, when we're in the middle of a bath that seems like it's taking five hours or rushing to head out the door but needing to do an Aquaphor application first, I think "this just plain SUCKS."

And I'm just going to come right out and say it: if I could make Brenna's skin better, I would. Not for me or for Evan, but for her. If I could make any changes for either of my babies that would make their lives in this world a little easier, I would. I know that she will be an incredibly strong person because of her condition, not in spite of it, and I love her more than she will ever know and wouldn't change a single thing about her for my sake... but if I could take away any physical pain and emotional hurt for my baby, as her mother, I would in a heartbeat.

Brenna's 4-month wellness checkup

We had Brenna's 4-month checkup today. (Never mind the fact that she's closer to 4.5 months now. With Connor, I was always excited to get in to the doctor and see how much he weighed. We monitor everything about Brenna so closely that the only thing I have to look forward to at the checkups are shots.)

Brenna is 9 lbs. 6 oz. now - woo hoo! What a beast :) But steady growth is a great thing for her, and she's continuing to grow, slowly but surely.

Four month stats:

Weight: 9 lbs., 6 oz. - 1st percentile

Height: I forgot to ask :( but 1st percentile again (It's somewhere around 22-23 inches I think)

Head: again, I didn't get that number (terrible, aren't I?) but again, 1st percentile

Diaper size: 1

Clothing size: 0-3 months

Likes: being called "pretty girl" or "so big!", sitting up when being held, looking at the light-up star on her activity mat (a favorite of her brother's too!), napping in her swing, watching her brother run around in circles, and interjecting her voice into the conversation. 

Dislikes: bathtime scrubbing, long car rides, being left alone lying down when she's not tired and wants to play, tummy time, being cold, being moved when she's all sleepy and comfy.

Eats: About 120 mL every 2.5-3 hours during the day with a bottle of 80-90 mL before bed and about 150-160 when she wakes up. We fortify her 120 mL bottles with a teaspoon of formula so that each ounce is 22 calories instead of 20.

Sleeps: Usually about 3 naps a day, with her long one being in the morning right now. She's good at cat-naps too. She also takes a decent nap before bed, and we joke that she has to rest up for her night of sleep. Lately she's been sleeping from about 9:30-10 p.m. until somewhere around 4-5 a.m., and then she'll typically go back to sleep for a couple of hours. (I know I shouldn't complain, but I can't stand those 4 a.m. wake-ups because I've gotten just enough sleep that I really am not able to fall back to sleep after that!)

Love my little nugget :)

Brenna's Skin at 4 Months

One of the most frequent statements I hear about Brenna from those who have been following our journey is "her skin looks so good!"

She has come such a long way since her birth, and she does look like a completely different baby.

But at the same time, I have to say that her face and top of her head by far look the best...as in the most like "typical" skin. And since it's been cold and we keep her in hats most of the time, her face is usually the only part of her body that everyone sees.

The skin on the rest of Brenna's body looks quite a bit more scaly and flaky...

Her arm...

The skin on her feet is some of the thickest on her body, and sometimes we have to put a topical retinoid called Tazorac on it to help it shed. I spend a lot of time on her feet in the bath, especially her toes.

We scrub both her feet and her hands as best we can, to ensure that the skin doesn't build up and restrict the movement in her digits. She is now losing the newborn grasp reflex, which makes it a lot easier to get off the skin in her palms. The girl has a surprisingly strong grip for such a little thing.

 Just as her original skin pulled all of her features extremely tight, her layers of skin now can also get pretty tight, and we are diligent about massaging around her eyes during her bath and Aquaphor treatments. You can see in this picture that the skin on her cheeks pulls her lower eyelids down, and they often get red and irritated because of that.

 Back of her head...

To be fair also, these photos were taken just before her bath, which is when her skin is at its worst of course. During bath, Evan and I are scrubbing maniacs, trying to aid her body in getting off this excess skin and keeping her joints and body parts as flexible as possible. (Her baby tub is full of tiny skin pieces after bathtime - it's not pretty, folks!)

We've definitely noticed an increasing thickness in Brenna's skin as we wean her off of the oral retinoid. Of course, it'd be fabulous if we could keep her on the medicine so that her skin layers are always a little easier to get off, but as with any medication, there are side effects (including liver problems), so we want to her to be able to adjust to life without medicine. Her skin will be like this forever (until a cure is found!), so I'm sure we will continue to modify our routine and figure out what kind of care and products work best as she gets older!

Feature on Brenna

After weeks of waiting, we finally got to see the printed copy of SIU School of Medicine's aspects magazine, which features a big article on Brenna and her doctors!

My former teacher-turned-good-friend Rebecca (yeah I still have a really hard time calling her by her first name!) works in the publications department for SIU, and she has been a constant source of encouragement for us after Brenna's birth. She asked us a couple of months ago about doing an article for the issue that would focus on the SIU pediatrics department.

(Also, as an aside, while interviewing us for the story, Rebecca learned about a lot of Brenna's needs and rallied so many of my former high school classmates, her coworkers and others, who generously gave us hats for Brenna, medical gloves, gauze, detergent and other supplies that we use on a daily basis - it has been a huge blessing to our family!)

Anyway, aspects - which is an alumni magazine for SIU - hit mailboxes this week! To read the article online, go here.

What really struck me as I read the final, published article was getting a glimpse into that day of Brenna's birth from the perspective of the doctors. I of course have thought about our experience that day many, many times. But I never considered what was occurring at St. John's while we were at Memorial: rapid preparation at the NICU to admit a baby with a condition none of them had ever seen before, research about the condition, and, as Dr Nimavat says in the article, a group effort of all of the neonatalogists and specialists in formulating a plan of action to keep her alive.

I think Rebecca did an absolutely wonderful job of capturing our family's experience with many of the SIU medical staff members and of highlighting their incredible skills, knowledge and care. We were so glad to get the opportunity not only to further educate others about Harlequin Ichthyosis, but to praise our team of medical staff who saved Brenna's life and continue to provide her with the best care possible.

A Bite to Eat

Brenna sees a speech pathologist every other week to have her eating techniques and swallowing evaluated. Our speech pathologist, Cheri, is absolutely wonderful and makes home visits to our house! 

Cheri makes sure Brenna is eating at the proper incline for her age (at about 4 months, babies' tongues drop and so she needs to sit up a little more now) and listens to her swallowing to evaluate if she's too "gulp-y". Hard swallowing means she's burning too many calories while eating.

Yesterday, Cheri said that Brenna is ready to start "practicing" with a spoon! She brought us some baby applesauce to try out with it. We're not really going to have Brenna start eating solids yet because milk has so many more calories and fat, so milk will really be the bulk of her diet for quite a while versus baby food, which is largely comprised of  just water.

Brenna wasn't quite sure what to make of the spoon...and she wasn't a big fan of the applesauce as you can see!



I'm loving experiencing these milestones with my girl :)

She's Big Stuff

Someone thinks she's a pretty big deal these days...

Trying to sit up...

Making new friends...

Rolling onto her side from her back...

Checking out the action...

And trying to talk!!

Ichthyosis Awareness Month

Today is May 1, which means the start of Ichthyosis Awareness Month! (what, you didn't already know that!? :) )


I've mentioned FIRST before on this blog. FIRST is the Foundation for Ichthyosis and Related Skin Types, and the mission of FIRST is to "educate, inspire and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy and research funding for better treatments and eventual cures." With the assistance of experts on its Medical &Scientific Advisory Board, FIRST also helps to sponsor ichthyosis research.


We have had several friends, acquaintances and blog followers who have made donations to FIRST in Brenna's name since her birth, and for that, I am so touched and grateful! There is very little money given for ichthyosis research because it is so rare. And Harlequin is one of the rarest.


But research will hopefully mean that one day a cure will be found, so that these babies don't have to fight for their lives and face daily challenges throughout their lifetime in regards to their skin. And through raising awareness, people might be more willing and able to accept these children from the first second, and not judge or ridicule them because of their appearance.


During May, FIRST holds a fundraising campaign called "It Makes Cents to Help FIRST," which encourages everyone to collect change for ichthyosis awareness and research. I had high hopes of coordinating a change collection here locally this month, but I quickly realized that I would be getting in way over my head this year :) However, we will definitely be collecting change in the Westlake household to donate to FIRST!


We would be so thrilled if anyone would like to join us in this endeavor and collect your loose change for the month of May for FIRST. If you want to make an online donation to FIRST for ichthyosis awareness and research, you can do that here. 


I also want to thank all of you who have been so diligent about sharing my blog and Brenna's story with others. I am beyond grateful that you have all been so actively involved in raising awareness about Brenna's condition. Thank you for loving my little girl!