Commemorating Rare Disease Day: My Storybook Project

Today, February 29, is Rare Disease Day.

Before December 19, I hadn't given much thought about rare diseases. But that day, we were thrown into the world of Harlequin Ichthyosis...and since then, our lives have revolved about this disease and its affect on our little girl.

In honor of Rare Disease Day, I want to share about a very special project I've been involved with recently and to ask for your help as the project moves into the final stage. When Brenna was a couple of weeks old, a friend shared on twitter about an organization called MarbleRoad, which raises awareness about rare diseases, and a "contest" they were doing called the Rare Children's Storybook Project. The focus of the project was to compose a story involving a rare disease...and then chosen finalists would be asked to create an accompanying video.

At first, I didn't think I had time to devote to writing a story in a matter of days. But one afternoon, I spent a few hours alone with Brenna at the hospital, and when I came home, the story just poured out of me. I wanted to write something for her and to her, so that she would know how we felt about her birth and her presence in our lives.

This is my video, sharing the story of Brenna's birth and our journey as a family over the last couple of months. Below, you'll find my story, which was written for the 0-5 age range (and you can read the stories of the other finalists in the storybook gallery here.)

The winner for this project (who receives some money for medical costs and is considered for publication) is chosen based on the number of views, comments and "likes" on the video, so I would really appreciate you all taking the time to watch my video and read my story about our sweet girl!

For You, We Prayed

Daddy and Mommy knew something was missing in our family

We said, “We need a little girl to love.”

So we prayed and prayed,

Asking God to send us an angel from above

“And not just any little girl, Lord.

We want a baby as precious as can be.

We want to give her hugs and kisses,

And make sure that she’s happy.”

“I have a very special baby girl,” God said to us.

But she will need more care than other babies do.

Her skin will be very different,

And her ears and eyes too.

She will need lots of understanding and time from you

Sometimes she might be very sick.

But the laughter and joy she has to share

Are truly heaven-sent.

I need to find parents for this special girl whom I can trust.”

We said, “Please God, choose us!”

We told him, “We have so much love to give

And happiness to share.

We know this perfect child

Is the one we have been praying for.”

“Bless us with this child,” we implored.

“We trust your plan for her, oh Lord.”

God smiled and said he would grant us this great blessing.

Your condition at birth was just as he said.

But we have faith in his plan

And the journey on which we’re being led

On the day you were born

And every day since,

We have thanked God

For our very special gift.

New day, more changes

First, thank you all SO much for all of your words of encouragement and your offers of help and advice yesterday. We are looking into getting donated milk from some of you wonderful donors...and I also spoke with Brenna's nutritionist yesterday about the situation.

She said it's not uncommon for babies - especially infants this young - to have a reaction to formula like this...as many of you have experienced too :) So she also recommended a couple of other formulas that are lactose-free and have the proteins already broken down.

For now, we are going to stick with milk, and fortunately Brenna seems to be on the upswing. I am so thankful to both have a great stockpile of milk and to have connected with some women who are already tested donors and have offered to donate to us. Thank you for listening to me vent yesterday...everything seems worse when you're not getting much sleep :) but I am feeling much more positive today!

Today, Brenna had two different doctor's appointments: her NICU "graduate clinic" and her first ENT (ears, nose and throat) appointment.

Probably because of her tummy problems, her weight is down...so we are working on getting an infant scale, so we can regularly monitor her weight. Otherwise, everything looked really good!

At her ENT appointment, we got her ears cleaned out - yea! We hadn't met our ENT doc before, but she is absolutely wonderful. She used several different instruments - a pick, scoop, suction tool - to scrape out all of the dead skin build-up in Brenna's ear canal.

Between clean ears and another victory during bathtime, Brenna is like a new woman tonight...

That's right, the last of her original skin is finally GONE! Look at that bald head! She looks so different, I can't get over it. I am loving her new look :)

Formula Fail #2

To say that I'm discouraged is an understatement.

As I mentioned before, I decided to stop pumping and start adding in formula to Brenna's meals. I began weaning from the pump all week, and on Saturday, we added in one ounce of Gentlease formula with about 4.5 ounces of breastmilk. A couple bottles of that later and Brenna was throwing up, having diarrhea (sorry, TMI?) and not wanting to eat as much as usual.

Thankfully she hasn't thrown up since yesterday at noon, but it sure is still coming like water out of the other end, and her wet diapers are very infrequent. We're really thinking that she might have some weird sensitivity to formula and not be able to tolerate it.

We switched back to milk mixed with pedialyte to ensure that she stays hydrated. She's finally eating well again, as of her last two feedings. But I am so incredibly frustrated with this situation.

I was finally feeling good about ending the pumping and was so excited to remove that step from our crazy routine, and now there seems to be no end in sight. It stresses me out just to think about continuing to pump for the next however many months, when the first two have really worn me out.

This just makes me want to cry. So long, sleep and any second of free time. Hello, stress.

Almost a bare head!

Yesterday late in the day, I realized what date it was: February 25. Exactly two months from our nightmare of a Christmas...and exactly one month from the day that Brenna came home from the NICU. It doesn't seem possible that it has already been an entire month that she's been home with us (aside from her little visit back a week ago).

Yesterday we had a little celebration due to a big victory during bath time...

Notice anything missing??

One of the last two big stubborn plaques finally came off!

I don't often show photos of Brenna's bare head since she wears hats so much, but you can see in this photo of her from the day she came home that she had three remaining pieces of her original thick skin still adhered to her head.

The littlest plaque came off pretty quickly after we brought her home, but those last two were really wearing out their welcome. Last night during her bath, we were able to work off the edges enough and (very carefully!!) lift it off - yea! Just one more to go and my sweet baby's head will be free!

This morning, we attended church for the first time as a family of four. Both kids behaved like a dream, thankfully. Brenna also got to wear a brand-new ensemble - and her first true "outfit" (aka not a sleeper).

New outfit, church and losing a big piece of skin...big weekend in the Westlake household :)

My greatest resource

Not only has the medical staff here never seen a case like Brenna's - and very likely never will again - but her condition is so rare that it is very difficult to say exactly what works and what doesn't in treating and caring for these children. Truly the only way to discover what works is to live it each day.

Sometime early in our family's journey, De De found my blog. De De's adorable 20-month-old son Evan is also affected with Harlequin Ichthyosis. And what started as a single comment on one of my posts has turned into emails, facebook messages and most recently, text messages. De De and I probably correspond at least every couple of days now!

Honestly - and I have told her this before - I don't know what we would have done without their family. They have provided invaluable information to aid us in the daily battles with Brenna's skin. De De has taken the time on numerous occasions to write in-depth messages about how they care for Evan, answering so many of my questions about skin care, eye care, ear care, laundry, Aquaphor treatments, medication, bath rituals and so much more.

The day before Brenna came home, a care package arrived from De De and her husband Joe. It contained dozens of medical supplies and items accompanied by a long list of each item and the way that they use it to care for Evan, from ear cleaners to wash cloths to antibiotic ointment for cuts.

Then, on the day of Brenna's homecoming, this photo popped up on my facebook page:

Is that not the most adorable thing you've ever seen? We were melting when we saw it :)

A couple of weeks after we came home, we noticed that the scales on Brenna's head were really starting to build up again. So I turned to De De, who not only provided amazing details about how to battle the thick scale but sent us photos of Evan's skin build-up on his face a few weeks after they came home as well - helping us to feel like we were not at all alone with these challenges!

What I have always found very surprising - because De De has been so incredibly helpful and open - is that we were the first family affected by Harlequin that they ever reached out to. Now, however, De De has joined some groups on facebook, connected with other families and even met up with one of those families in person! And with all of this going on, De De has decided to start her own blog, sharing their family's story and raising awareness about ichthyosis.

I highly encourage you to check out her blog here and read about her beautiful little boy!

I am so looking forward to the day when we get to meet De De and her family, and several other families who we have been in contact with. I feel like we have known them forever already, and I am so thankful for their willingness to reach out and help us as we try to mirror their efforts of raising happy, healthy children!

Recalling Brenna's Birth

The other day, I realized I had never gotten to ask my mom about her and my dad's experience when Brenna was born.

My parents were actually the ones who got to "rush" me to the hospital - my dad watched Connor while my mom drove me to Memorial. Evan had a business trip planned to Indianapolis that day, and though I was having some contractions the night before and throughout that early morning, they weren't at all consistent. Since Connor had been a week late, we both figured it was just more of the Braxton Hicks contractions that I'd been having very frequently.

Imagine his reaction when I called him - 19 miles outside of Indy - to say my water had broken :)

Fortunately, he was able to hightail it back and arrived about 45 minutes before we started pushing. My labor was progressing quite quickly, so my mom was texting him to inquire his whereabouts without trying to worry him!

When it was time for the pushing to start, my parents decided to just wait in the hallway because it was suspected that it wouldn't be long before baby arrived. Though it all happened very quickly, I will forever remember each detail of her birth so vividly.

My ob/gyn wasn't on duty that day, but we lucked out with another physician from the practice, Dr. Klein, who was absolutely wonderful. As Brenna came out, Dr. Klein commented that she had never seen a baby with such thick vernix before.

Evan and I asked what vernix is, and she explained it was the white stuff that covers the baby when he or she is born. But then, a minute later, Dr. Klein pulled Brenna out and laid her on my chest...and the entire room was completely silent.

Literally a second later, the medical team in the room sprang into action. My initial reaction was that they just needed to wipe Brenna off. From what I could see, her entire body was completely covered in white, and that was what stood out to me at the time. Thankfully she began to cry a very healthy cry, and that put me at ease for the time being. Otherwise, I honestly would have thought she was stillborn.

Evan snapped one quick picture before he got very light-headed at the sight of her, and I remember looking over to see a nurse helping him into a chair and putting a cool cloth on his head.

As I watched a nurse begin to wipe Brenna down, there was rapid discussion about which neonatologist was on duty that day. One of the nurses hit the intercom and told the responder that Dr. Darling was needed.

A pause...and then, "She's in surgery right now."

Several voices from our room barked immediately back: "Get her in here NOW!"

It was this discussion that my parents were listening to in the hall. I wasn't aware that they could hear everything, but my mom told me that they began to wonder and worry at this point. My dad stopped a passing nurse and asked what kind of doctor Dr. Darling was. When she told them "a neonatologist," their hearts sank.

Dr. Klein was still tending to me at this point, and I remember she kept trying to give me a reassuring smile, but I've never seen such worry in someone's eyes like there was in hers that day. Dr. Darling rushed in pretty quickly, and immediately she and a nurse wrapped up Brenna and left the room with her.

As they passed by my parents, my mom said that Brenna's eyes caught her attention, being bright red and flipped outwards. Dr. Klein emerged right after, and my mom asked her what was happening. She replied that they didn't really know.

Up until then, I had felt completely frozen, but my parents entered the room, and my mom was crying, and I started to cry too. We originally were told they thought it was Lamellar Ichthyosis, a less severe form of the disorder, but when the medical staff texted a photo of Brenna to Dr. Conlon, he immediately diagnosed it as Harlequin.

Brenna was transferred to St. John's NICU a couple of hours after birth, and we were able to hold her hand before they left. Dr. Conlon met Evan at St. John's that night, and then they came over to meet with me and both sets of our parents to talk about Brenna's diagnosis.

Even then, I didn't realize the severity of the situation. Evan and I chose to stay off of the Internet and to get all of our information from the physicians. We wanted to know about Brenna and only Brenna at that point; we didn't want to cause ourselves any more anguish than we had already experienced that day.

I thought having a skin disorder meant that she would simply look different; I didn't even begin to comprehend the vital role that skin plays in the health of our bodies. It wasn't until nearly two days later, as we learned more about this disease, that I thought "my daughter is going to die."

But our little miracle baby has proven that she is a fighter and possesses a lot more spirit than we ever imagined. I think about her birth a lot, especially when I look at photos from friends who are having babies. Their albums are full of dad cutting the umbilical cord, proud grandparents holding the baby, the baby being weighed and measured, the baby resting comfortably on mom's chest with the little hat pulled tight over his head. In a nutshell, a happy and exhilarating time...quite the opposite our experience with Brenna, which was full of uncertainty and sadness.

But that experience has given us strength and inspiration and a gratitude that comes from seeing God's hand at work. Not a day goes by that I don't look at her and thank God for turning a traumatic birth experience into a situation that has brought us more joy than we thought possible!

CTK has a Heart for Brenna!

Last week on Valentine's Day, my old grade school, Christ the King, put together a day for our little girl, called "Have a Heart for Brenna." They made Valentine's Day cards for Brenna - including a huge card that the whole school signed! How awesome is that?

They also had a sucker sale benefiting our family...

We are just blown away by the support and love from these kids, their parents and the staff at CTK! It is so amazing for us to think about the efforts that everyone is putting in to show support for our family and for our precious little girl.

And since CTK is my alma mater, many of the teachers still there are teachers who taught me...and I know so many of the families of the children there now since we still go to church at Christ the King. I had fun reading cards from so many familiar names, including my cousins who go there!

The adorable heart basket is full of Valentine's cards! And the sign has lots of cute pictures of Brenna :)

Brenna wanted to show her love in return to CTK :)

A huge THANK YOU to the wonderful parents, students, staff and parish members at CTK who have showered our family with love!

Two Months Old!!

First and foremost - Brenna Helen Marie is TWO months old today!

What a ride these last two months have been. And I have a feeling you are only going to continue to amaze us, my sweet girl...and keep us on our toes :)

Our baby girl got to come home from the hospital yesterday afternoon! As we headed to visit her there yesterday morning, we knew two things: that the doctor wanted to talk to us and that we should bring a couple days' supply of milk. So with that information, I was pretty discouraged.

However, when we arrived, the doctor told us that Brenna was eating enough to stay hydrated on her own, without the need for IV fluids (which had been discontinued the day before), and as long as she ate well at the next feeding, she could leave. YES!

So now we are all home sweet home. And she is continuing to eat well for us. Last week before she was readmitted to the NICU, we had an appointment with a nutrition team to discuss her eating, maximizing caloric intake, proper weight gain, etc. One of the steps we took at the hospital the first time around was changing to fast flow nipples in order to ensure that she is not burning too many calories while eating. However, our dietitian and speech pathologist encouraged us to switch to Dr. Brown's bottles and nipples so that Brenna learns how to properly suck and develop those muscles in her mouth and cheeks that will help her continue to eat properly in the future.

She is doing really well with this transition and has been taking about 140 mL at her feedings. (She had been eating 160 previously but with the fast flow bottles, she lost a lot of milk out of the sides of her mouth, so 160 really isn't accurate.)

Along those lines, I have decided to begin breaking off my relationship with my trusty pump. I know that a lot of kids get formula, but I have always felt so strongly about breastfeeding. Having said that, pumping has become such a burden and source of stress to me now - especially in the mornings as Evan leaves for work and it always seems to work out that Brenna is waking up to eat and needing her treatment, Connor is waking up and wanting to eat and then I need to pump, and I'm trying to juggle all of this.

So while I want to do what is best for Brenna, I also want to do what is best for me and for my family. And I am feeling such relief now that I have made this decision and am cutting this step out of the craziness of the rest of our lives. We also have a huge stockpile of frozen milk, since I've been a milk machine since the beginning, so Brenna will continue to get breastmilk (supplemented with formula) for quite a while, thankfully. We're going to add in formula very very slowly so that she gets used to the change and her stomach can handle it.

My lil peanut

Unfortunately Brenna's time in the hospital was not so kind to her skin. Her bath, which is SO important in her care routine, was neglected for several days, and then when we were finally able to give her a bath, it was difficult to have to work around her IV and not get it wet.

We have done three baths now since coming home yesterday afternoon, and we're finally getting the scale build-up under control. Because her skin produces so quickly, if it is not maintained and scrubbed every day, the scales build up and ridges start to form again, which are prone to infection.

We are so glad that our sweet girl is back home and doing well again....and we hope that any illnesses stay far away from our house for a long time!!

Sick Yet Still Stylin'

Being sick is no excuse to not look stylin' and profilin' :)

Eating to come home

Brenna Girl is still taking up residence in the NICU. It is so surreal being back in our old room, with all our favorite nurses taking care of her...it's almost like we never left and the time at home was just a dream.

Her hydration levels are finally up, but she's just not eating as well as they are hoping. They started her back on feedings yesterday, with 30 mL to start - half breastmilk, half pedialyte. She moved quickly up to 60 mL, which she gobbled up for me yesterday afternoon.

They raised her up to 90 mL, but she didn't quite go for it...but she was still eating around 75 during the night. Today, however, she is struggling to take down 60 and just seems to have no interest in it. This is not typical for my girl, who normally eats like a horse when she's feeling well.

The sooner she begins eating well, the sooner she gets to come home...eat, sister, eat!!

NICU Round 2

Well, I never thought I'd have to write this, but our sweet girl was admitted back into the NICU this afternoon.

Brenna has been having stomach issues since last Thursday, but after about four days of illness, she really seemed to be on the mend Sunday and especially Monday. By Monday, she was sleeping well again, eating about 120 mL (typical is 160 for her) and displaying her usual easygoing temperament.

Yesterday, however, she started throwing up again, wasn't eating well, her temperature had risen to 37.8 C and the fluid was flowing through her like water. After an absolutely horrible night last night where one of us was literally up with her the entire night, we took her to the doctor early this morning. Her pediatrician prescribed a few things and told us to continue to watch for signs of dehydration.

Purely by coincidence and on a completely different note, one of Brenna's newborn blood screenings had come back abnormal, so we were ordered to go to Memorial to get her blood drawn again. While we were there, we ran into one of her neonatologists from the NICU and while we were chatting, we told her about Brenna's ongoing illness.

Dr. Jean Louise was pretty concerned the more we told her about Brenna's inability to keep fluids in and decreased eating, and she put in a call to the NICU, where some of the other doctors on duty agreed that she should come in.

So early this afternoon, she was admitted again, with the belief that she has some sort of stomach virus. Her immediate blood tests showed that she was pretty dehydrated, so she's now on IV fluids. Also of concern was her weight loss - the week she was discharged, she weighed 6 lbs, 15 oz...and we assume based on her great eating that she had probably gained even a little more after that. This morning at the doctor, she was 6 lbs., 2 oz. Our poor skinny little kitten.

Evan and I are SO incredibly thankful that we happened to run into Dr. Jean Louise, so that now Brenna can get the proper amount of fluids and nutrients and be under the care of medical staff. She will be spending at least tonight at the hospital while they run tests to figure out if she has a virus, give her IV fluids and try to get her to keep some milk in her system.

We are going to use this time to catch up on sleep :) and pray that with this wonderful medical care, she will be on the mend very soon and able to be back at home with us!

It's a Love Story

Valentine's Day is not something that Evan and I have ever really gotten too excited about. I do love all holidays, but we've never wanted to feel pressured to go out to dinner and exchange gifts just because it's Valentine's Day.

Love, on the other hand, is something that we celebrate all the time around our house. Love is a constant in our family.

Evan and I met during my sophomore year of college, when he was a freshman. We began dating at the end of that school year, and we fell in love over the summer as we enjoyed lots of time together. We ended up working just a block from each other that summer - me as an intern for the state and Evan at the bank where he now works today. We would often meet up together for lunch downtown and spent a lot of time together boating on the lake and hanging out with friends.

May 2004 - FarmHouse Formal

July 2004 - Table Rock Lake

September 2004 - skiing at Lake Shelbyville

March 2006

We dated the rest of college, enjoying many Greek functions together, Saturday afternoons of tailgating and Illini football, nights out with our friends. I graduated in 2006, and that summer, we took a trip, like every summer, with Evan's whole extended family from his mom's side to Table Rock Lake in southern Missouri.

Our first night there that week, Evan took me on a sunset boat ride with a bottle of my favorite wine...and asked me to be his wife.

We were married October 6, 2007.

For two years, it was just the two of us...

Then on September 13, 2009, our beautiful baby boy arrived! We were thrilled beyond words at this new addition to our family and joked that two parents couldn't possibly be more obsessed with their own kid than we were.

November 2009

September 2010

We knew we wanted at least two children, so when Connor was about a year old, we began to pray and hope for another baby. It took a little longer the second time around, but in May 2011, we were overjoyed to get a positive pregnancy test. When our sonogram showed that we were having a girl, we knew we couldn't have asked for a more perfect family of four.

Obviously Brenna's arrival was not what we had planned for or expected, but we still feel that we couldn't have asked for a more perfect family.

And through all of the trials and challenges over the last two months, Evan has been my rock. There has never been a moment where we have turned against each other, knowing that forever and always we are in this together, no matter what God hands us.

While Brenna was in the NICU, and especially those early days, we would make time each night to sit and talk to each other, sharing our feelings, our fears, our hopes - leaning completely on each other during that difficult time.

It may not be the most glamorous love story ever told. But to me, true love is not the drama, the glamour, the break-ups and make-ups that so many shows and movies portray it to be. True love is forever love, unconditional love. The kind of love where you know that no matter what happens in life, you will always have each other, you will always be there for each other. Where you put each other's feelings and needs first among all else. Where, when God gives you the most difficult challenge of your life, your love and relationship are strengthened.

Evan summed it up for me the other day...we were both bleary-eyed early in the morning after being up most of the night with a miserable little girl battling a stomach bug. He looked at me and said "Sometimes this sucks. But I wouldn't want to do it with anyone else."

Happy Valentine's Day!

Happy Valentine's Day from our family to yours :)

Choosing happiness

I decided to believe that God threw a couple of stomach bugs at us over the last two weeks to show us that caring for two healthy (relatively speaking) kids is actually pretty easy. I've been a little frustrated and sleep-deprived, but I am really trying to remain positive and laugh about these situations. So I wanted to write an uplifting post, with some thoughts that have been on my mind in the last couple of days.

If there is anything that Brenna's birth has taught me, it's that the choices we make about how we react to situations have such a meaningful impact on our lives - not only for that particular situation but for everything going forward.

I don't think there's a day that goes by that I don't struggle at some point with maintaining a positive attitude, though some days are definitely easier than others. Faith in God's ultimate plan certainly helps.

I am becoming more aware of choosing how I react to each challenge we face when it comes to caring for Brenna. And I am choosing to look not at what is different from a baby without these special needs, but to cherish her uniqueness.

Instead of missing the smell of Johnson & Johnson's baby lotion, I am choosing to love her little Aquaphor scent.

Instead of lamenting the fact that most days I don't have time for makeup and hairstyles and jewelry, I'm choosing to savor the opportunity for a hot shower.

Rather than trying to limit the Aquaphor stains on my clothes, I am choosing to snuggle my baby without concern for my shirts. (who needs nice clothes anyway?!)

Instead of focusing on any limitations she might have because of her skin, I'm choosing to look forward to all that she is doing and all that she will achieve in the future.

I'm choosing to look at the big picture rather than dwell on the small challenges we face each day. I'm choosing to rejoice in each successful bath/skincare treatment and newly shedded skin instead of dwelling on the fact that our lives now revolve around baths and skincare treatments.

Each day, I'm making it a point to stop for a moment and thank God for these wonderful gifts that he has given us. I'm choosing to laugh instead of cry when I'm frustrated. I'm choosing happiness.

Fighting a Bug?

Well, we got to the point this morning where we started to realize that Brenna's illness probably wasn't just due to a reaction from the formula...so we called a nurse from her pediatrician's office and talked to one of the doctors at the NICU, and they felt she probably has a stomach bug.

We were advised to monitor her temperature - which we already had been - to make sure it didn't rise above 38 degrees (Celsius obviously...37 degrees is 98.6 Fahrenheit) and to feed her as much as she would take and watch for wet diapers. Dehydration was a definite concern. Luckily her temp never got above 37.6.

Brenna's condition really didn't improve most of the day, and as of 2:30, she hadn't had a wet diaper since at least 8:30 a.m. We were getting worried that a visit to the ER was in our future in order to get her IV fluids.

At 4:30, she was due for her daily spa treatment (bath, skin exfoliation and Aquaphor treatment)...and lo and behold, she had peed! You know you're a parent when you get excited about pee :)

We're passed the 48-hour stage of this thing...so I am praying she's going to be on the upswing now! I hate to see my poor baby - who is usually so easy-going - be so fussy and miserable.

Formula Fail

Anyone who says that formula and breastmilk are the same...is horribly mistaken.

We were out at an appointment yesterday, so I gave Brenna formula for the first time and didn't think twice about it. By the time we got home, she started throwing up everywhere, and then it started coming out both ends. She barely ate the whole day and was pretty lethargic.

Then she was up the entire night, alternating between crying in discomfort and eating like crazy, apparently to make up for the day before. I think she literally ate about twice what she usually does, which is already a lot. But it was running through her like water, poor thing.

Today wasn't much better. She was too uncomfortable to sleep and cried continually. A nurse at the NICU and our doctor both confirmed that this type of reaction can happen when a little stomach that has only been on breastmilk is given formula, which is a lot harder to digest. Apparently we just need to let it run out of her system.

It's so hard to see your sweet baby when she's so uncomfortable and there's really nothing you can do. It's even harder when you got about maybe two hours of sleep. Poor Brenna...and poor mommy and daddy. I can only hope that tonight will be better.

A Well-Coached Team

During one of our many meetings in Brenna's little pod in the NICU, Dr. Conlon (our pediatric dermatologist) joked that Evan and I were doing a great job at filling the roles as team captains for Team Brenna.

Team Brenna has been an incredible force for our family - Brenna's "fans" are more loyal than those of the Chicago Cubs (though many of you all are Cubs fans, so I guess you know what team loyalty is all about!) We have been so proud to be the "team captains," and our little "player" has more spirit and fight in her than we could have ever hoped for.

Unconditional love and prayer are so powerful...but we have to give SO much credit to the rest of Team Brenna: the coaching staff - her incredible doctors and nurses.

It may sound silly, but sometimes I really miss the NICU...mostly because of the wonderful, caring, friendly people that make up the staff there. Every afternoon when I would arrive for my daily visit with Brenna, seeing her nurses was like hanging out with good friends. We would talk about everything from their children and families to photography and Pinterest :)

To have nurses who not only are friends but also care about your daughter like she is their own - it doesn't get better than that.

During our first week there, Evan made the comment to one of our nurses, Melissa, that it must be a tough job, taking care of such fragile babies and trying not to get too emotionally attached. That happened to be the night that Brenna got really sick, and Melissa cared for her over the course of that terrible night.

A week later Melissa wrote me a message. She had remembered Evan's comment, and she told us that yes, being a NICU nurse has its challenges, but what drives her passion for nursing is seeing the babies get better, get stronger and go home with their families. She had returned to work later that week, and Brenna was doing SO much better. That, Melissa told us, is why she does what she does.

Brenna and Nurse Melissa

There were several times when I walked into Brenna's pod to see little surprises like her first bow and photo collages of her first bath and first outfit. What seem like such trivial things with healthy babies became big "milestones" to us, and I'm so grateful that the nurses went that extra mile to share in these little celebrations with us.

Brenna with Nurse Leah

And Nurse Mindy

I will forever feel indebted to these wonderful, compassionate people for loving and caring for our sweet girl during her early days and weeks, and ensuring that she received the best care possible so that she could come home!

And now that we are home, we are continuing to be led by the best "head coach" we could have ever imagined: Dr. Conlon. I can't even describe how fortunate we feel not only to have a pediatric dermatologist right here in Springfield, but to have such an incredible one at that. And not only is he in town, his office is practically in our neighborhood. I can literally see the building from our backyard.

During our first visit to Dr. Conlon's office, his nurses surprised us with cute hairbows for Brenna and a little Cars toy for Connor - it was so sweet! We already feel so at home there (which is good, since we'll be there a lot I think!) Also during our first visit, we became privy to a start-of-the-weekend tradition at the office...disco music! Not a shabby soundtrack for a doctor's visit :)

What a blessing it is to have such amazing medical staff in our city. Big cheer for the Team Brenna coaches :)

Praying for Fellow Mothers

As I've written before, this experience with Brenna has really made me evaluate my relationships with others and the support and encouragement that I give to others. I am also realizing how much it has deepened my emotions of both sympathy and empathy toward other mothers who are facing challenges with their children.

There are several incredible moms who have been on my mind so much lately, and seeing as how you all have been such wonderful prayer warriors for Brenna, I am hoping that you might send up a prayer for these families...

I attended college with my friend Brooke and we were Alpha Gams together, though she was a year ahead of me. Her sweet baby girl, Charlotte was born last August with CHARGE syndrome and some other medical issues, and spent about six months in the NICU in Chicago. The week Brenna came home was a little bittersweet for me, because as we were planning Brenna's homecoming, baby Charlotte joined Jesus in heaven.

My heart just broke for Brooke and her family as she endured what no mother should ever have to. I have been thinking about her so much these last couple of weeks, and I've been praying for peace and comfort for her family as they grieve for their little girl.

Another fellow mother is one whom I've never met, but that I briefly connected with online through a mutual friend of ours. Kim and her husband were due with their baby girl in April, but the doctors told them during their pregnancy that their baby had some extremely severe medical problems and would not live. I began following Kim's blog the week that Brenna was born, and I prayed and prayed for their baby girl. Last week, a test at the doctor's sent Kim into early labor, and when baby Elliott arrived into the world, Kim and her husband were able to spend an hour loving on their daughter before she became God's little angel.

These precious angels joined little Tripp, another child whose story I found and began following when Brenna was born. The community of those affected by rare skin diseases is so close-knit and so caring, and I've been so blessed to have found the blogs of several other mothers with children with skin disorders, including Tripp's mom, Courtney. I've never connected with her online, but her writing is so powerful and her love for her boy is so incredible. Tripp passed away in mid-January from EB (epidermolysis bullosa) and I am continually amazed at Courtney's strength and courage.

Maybe it's because we came very close to losing Brenna (and her risk for infection is always in the back of our minds), or maybe it's simply being a mother, but I feel such a profound connection to these particular women whose babies are now watching down from heaven, and not a day goes by that I don't think about them and pray for God's peace for them.

Big Brother Holds Baby Sis

Connor hadn't seemed too interested in Brenna since she's been home, except to point out things like "Baby Brenna's crying." And we had kinda been trying to keep him away from her since he was sick this week.

But yesterday, we told him he was going to get to hold her for the first time, and to our surprise (and delight), he got really excited. He sat down and said "Connor hold the baby!" (Yes, he talks in the third person. We blame Elmo.)

He held out his hands, and as soon as Evan gently placed Brenna in his lap, he wrapped his arms protectively around her head.

He kept trying to "smile" and really just ended up looking like an angry chimp in most of the photos, so this was the best I got :)

The Illini were playing (though I use that term loosely based on their performance again Northwestern) yesterday, so we were decked out in our orange and blue!

I love my precious babies more than anything in the world!

BSS Spirit Day for Brenna!

Last week was Catholic Schools Week for the parochial schools in our city, when the schools plan fun events all week long to highlight our faith and what it means to live that faith each day. I'm a proud graduate of Christ the King, so I well remember Catholic Schools Week!

One of the schools in town, Blessed Sacrament, planned a Spirit Day for one of their events, and they decided to dedicate the Spirit Day to Brenna. I've been told that one of the 5th grade classes has even been following my blog and discussing Brenna's progress in religion class - shoutout to Mrs. Morehead's class! What an amazing feeling knowing that Brenna's story is reaching all of these children.

My best friend Kristin, who as I've mentioned before is also Brenna's godmother, has cousins that attend BSS, so she went to the Spirit Day activities...and the next day, she brought me a HUGE bag of letters from each and every one of those students, who not only wrote notes of encouragement to Brenna, but also to Connor. So cool! I was so moved by this that during the following couple of days, I read every single letter.

What sweet notes we received! Some of the classes went with a theme - such as Valentine's Day cards, or a big poster signed by all of the kindergartners. Others were so thoughtful as to include some of Connor's favorite Disney characters.

Connor (in his Woody PJs, no less!) with a card with drawings of Buzz Lightyear and Woody

The Lion King - so cool!

One of the classes decorated pictures of Buzz...

And let's not forget the star of the show...Brenna Girl enjoyed reading her letters too!

Kristin took some video at the all-school assembly, which I LOVED getting to see. Here are a few clips for your enjoyment. Yea Team Brenna!

Brenna has her own message in response to all of the love and prayers :)

Thank you so much to all of the students, staff, faculty, parents and community supporters at Blessed Sacrament for your outpouring of love for our family!