Run for Team Brenna!

Brenna is now going to have an actual team coming together for her during the Illinois races in Champaign this spring! My awesome friends from college are organizing "Run for Team Brenna" during the Illinois Marathon weekend on April 27 and 28. Those who want to join Team Brenna can sign up for one of the races at the discount July 2011 price!

For more info on the races (there is a 5K, 10K, half-marathon, marathon and Kids Fun Run), you can check out the official website here. The deadline to sign up for one of the races is March 1. My friends are ordering Team Brenna T-shirts too, so anyone who wants to rock a Brenna tee can order either a technical running shirt or a T-shirt!

And my favorite part of this all is that they have put together a spaghetti dinner at my sorority house, Alpha Gamma Delta, in Urbana for that Friday night, April 27th. I am unbelievably excited and hopeful that our family will be able to join everyone at my old house! I would love to be able to see so many of the people I went to college with again.

Anyone interested in joining Team Brenna for the run or ordering a T-shirt can email my friends at runforteambrenna@gmail.com - they'll send you a registration form for the race and sign up sheet for the dinner or T-shirt. You all can also check out more info on the Run for Team Brenna facebook page!

What a wonderful way to show support for our baby girl. We are so excited about this that Evan even sign up for the 5K race...I'm looking forward to seeing him cross the finish line, huffing and puffing most likely ;)

Six Weeks Old!

Brenna Girl is 6 weeks old today! What an incredible transformation she has had in just six weeks.

Oftentimes when I was driving to visit her at the hospital, I would listen to Martina McBride's song "She's a Butterfly" because it reminds me so much of Brenna. She has been like a little butterfly shedding its skin over the last few weeks...

Week of birth

Week 1
Week 2

I didn't take any photos during Week 3 because she had her eye surgery and looked so rough :(

Week 4

Week 5And finally today....Week 6

(a ladybug outfit is kinda close to a butterfly, no?)

Happy 6 weeks to my little butterfly...we love you so much, pretty girl!!

Realizing the challenges little by little

It rarely happens, but last night, both Evan and I were feeling a little down and a lot tired. Going from one to two children is always challenging, but throw in a baby with special needs, and life just got a lot harder.

Don't get me wrong - this wasn't a "woe is me" pity party we were having. This was more a "wow, our lives are going to be so much different than we ever anticipated, and we are realizing this more and more with each passing day."

Yes, we are out of the NICU and home with our baby girl. But that doesn't mean our baby girl is healthy now. Though we are thrilled beyond belief that our family is together now, we are finding the sole responsibility for her skin care, coupled with giving Connor the attention he needs and deserves, to be completely overwhelming at times.

I hate to sound like a complainer, but this can be so hard sometimes.

It's hard when you feel guilty that your first child has to take a backseat to your second child many times, and won't get to live such a carefree lifestyle he had been previously. I know that he is so young and won't ever remember what life was like before her, but it still weighs on me.

It's hard when you begin realizing that the community involvement you were so passionate about will be almost non-existent as you focus on caring for your children.

It's hard when you feel you're going to have to put on hold the goals and expansion of the small business that you worked so hard to build.

It's hard when your husband is about to go back to work and you have no idea how you're going to balance the care of two small children when one has such special needs. Right now, we've found such a great two-person system, and I am getting so anxious wondering how I am going to do everything by myself - between pumping, feeding her and doing Aquaphor treatments every three hours and just general newborn care, while not completely neglecting Connor.

And it's really just plain hard when you're not getting enough sleep!

I never could even begin to see Brenna's presence in our lives as anything other than a complete blessing, and we love her more than words can ever express...but that doesn't mean we don't find this whole experience to be such a challenge at times. I just need to keep having faith and rely on God's strength...

Getting the hang of it

These last couple days, our lives have revolved around feedings, baths and Aquaphor, Aquaphor and more Aquaphor!

Oh and Disney movies, which Connor is now obsessed with, and with all of the craziness going on right now, it's hard not to give in to this obsession. But let's be honest, who can say no to this face?Brenna was so thoughtful as to bring Lion King to Connor upon her arrival home. She scored major brownie points with this move.

Evan and I are really getting the hang of Brenna's skin care routine, though it's hard to remember to try to keep things so sterile. I'm not just a clean person by nature! But so far, so good.

We had Brenna's first appointment with her family doctor yesterday, and she's now up to 6 lbs, 15 oz! She's gaining weight like a champ, and is now eating around 5-6 oz every 3-3.5 hours.

She's getting lots of cuddle time, and is sleeping really well in her crib at night. Last night, she slept a couple two-hour stretches in her bed...which definitely made her mother happy.

I wasn't too impressed when she decided that she wanted to hang out after her 2 a.m. feeding. I couldn't for the life of me remember what to do with a wide-awake, non-fussy 5-week-old! So we read some books and sang some songs, and finally we both dozed off together on the couch until her next feeding...

Brenna got to see her Uncle Brian (my brother) yesterday for the first time since she was a few days old.And she caught up on her current events with Daddy this morning :)She is continuing to amaze us with her beautiful little spirit and spunk!

Bringing Brenna Home!

We got to the hospital yesterday early afternoon, and Brenna was patiently awaiting her discharge orders...
Dr. Su, her opthamologist, was the last doctor she needed to see. He checked out her eyes, and we made arrangements for a follow-up visit with him. Then we were given the green light to leave!

Getting ready in her pretty "going home" outfit

Lots of paperwork had to be done, so we hung out in Brenna's little pod - where we were able to hold her free of the machines! Such a great feeling.

"Come on guys, let's ditch this joint."
Taking off out of the NICU! (at this point, my flash was acting up - sorry for the dark picture.)
Ready to launch :)Daddy's leading the charge...Loading into the car...And finally, the car ride home!!She did very well on the ride. She even fell so soundly asleep that I poked her a few times...you know, just to make sure :)

When we arrived home, we were greeted by big brother Connor and some Welcome Home signs.Brenna's first night home was...quite a process. Evan and I decided to tag-team every feeding/Aquaphor treatment/medicine routine...so it was an eventful night. We are getting the hang of it though! I am so thankful that this is not my first baby. Everything is coming back to me about caring for an infant like second nature, and I think if this was my first, I would be a train wreck. God definitely knew what he was doing with our family!

Home Sweet Home

Getting ready for departure from the NICU!

We are now home sweet home, and are settling in nicely! It's been a whirlwind of a day, but everything has gone so well. I'm feeling much more at ease and less anxious than I expected...many more photos of the day to come, but for now, I'm going to enjoy this wonderful feeling of having my family together at last :)

Finally...That Magic Word

Even though we've been taking all of the steps to bring Brenna home, and she's passed all of her "tests" with flying colors, it still seems a bit surreal to me. I haven't wanted to get my hopes up in case something came up that prolonged the process.

But I'm finally ready to say it.

After days and weeks of planning for it, I'm finally ready to announce what we have been focused on since day one, what we and all of you have prayed for continually, what we never expected to happen so soon...

Brenna is COMING HOME!!

Her discharge from the NICU is being planned for tomorrow afternoon, and we couldn't be more elated! We were originally told she would be in the NICU for "months"....and after just five and a half weeks, Brenna has defied all the odds against her and surpassed all of our expectations. It is without a doubt a true testament to the power of prayer and power of love! We are so grateful to God for his healing touch and for such a capable and compassionate medical staff at St. John's Hospital.

Though we know we have a huge road of challenges before us still, we are so consumed with the wonderful reality of having our family of four finally under one roof. God is so GOOD!

Skin

I've been getting a lot of questions specifically about Brenna's skin - what exactly Harlequin Ichthyosis means, what her skin will eventually look like, is there a "cure"?

There are many different kinds of ichthyosis, and Harlequin is the most severe type. All forms are rare genetic disorders. "Ichthy" is actually the Greek root for "fish," which describes the thick scales of skin that are characterized by the condition.

Right now, there is no cure for ichthyosis, but huge strides have been made in treating those with the condition in recent years. Babies with Harlequin typically died within days because of either infection or from respiratory failure because their thick skin restricted breathing. In those early days after Brenna's birth, she would take very short, quick breaths because her chest wasn't able to expand to take deep breaths.

Now, however, there are more and more babies who are surviving infancy thanks to medical education about how to best treat this condition.

As for what Brenna will look like as she grows older, her skin will most likely be very pink or red, and very dry and flaky. We will be giving her a bath once or twice a day to allow moisture to sink into her skin and to help scrub off some of the thick skin that is growing back. Basically Brenna makes too much skin too fast, so by lightly scrubbing in the bath, we can help remove some of that excess skin.

Many of you have watched that video of Hunter that I posted a link to. Here is a recent photo of Hunter, so you can see what Brenna's skin will look like. (I just love this photo of her all dressed up for a dance - so pretty!)
Even though Brenna has shed her thick white plates of skin that she was born with, she will always have a susceptibility to infection. We will regularly have to put tiny amounts of bleach in her bathwater to kill bacteria on her skin because her skin doesn't provide the barrier to bacteria that normal skin does.

People with ichthyosis are also prone to dehydration, as well as overheating when it's warm or too much heat loss when it's cold, since their skin isn't able to regulate body temperature, so this is another area of concern with Brenna.

If you have any other questions specifically about Harlequin or Brenna's skin, I am happy to try to answer them and add on to this post with more information...

________

Edited to add:

Question - is Harlequin painful?

Without having it myself, I can't accurately answer this, but here's what I have observed and read... in the beginning, Brenna did seem to be in some pain. She was getting doses of morphine twice a day to help ease this. After all her skin was "shed," however, the morphine was discontinued and she seems to be doing very well with any discomfort now.

From what I can tell as those with Harlequin grow older is that the skin condition is not necessarily painful, but if the skin gets too dry, it can be pretty uncomfortable. Just as our skin feels much better after we put lotion on, people with ichthyosis feel much better after baths and putting Aquaphor on and just generally staying hydrated.

Open Crib!

"Look at me! I'm in a big girl bed!!""And I have my first crib toy to entertain me!"She's all swaddled up, so you can't tell, but she's also wearing CLOTHES!

Brenna got a visit from her Aunt Alayna today...And she got to meet her Poppy (great-grandfather) and her godmother Kristin for the first time! What an exciting morning :)Even Connor got to peek in...And then he realized I was taking photos, so he "smiled" :)In addition to being in an open crib, Brenna also now weighs 6 lbs, 9 oz! She's growing like a weed!

Busy Girl

I don't think there was a free minute in Brenna's schedule today...the girl needs her own secretary!

On today's agenda was...

-a visit from the plastic surgeon. He checked out Brenna's fingers and toes, and all her joint areas, to make sure her skin is allowing enough range of motion that her joints and muscles are able to develop correctly. He said nothing looks too concerning at this point! We will do a follow-up with him at some point to get things checked out again.

-her newborn hearing test...she passed!!

-a great occupational therapy session. I held her in my lap while we did her session, working on the motion in Brenna's shoulders, elbows, wrists and fingers, as well as her hamstrings, ankles and toes. The thick skin on one of her index fingers has come off, so we were able to help her stretch out all of the joints in that fingers. Our OT is very encouraged by Brenna's progress and range of motion.

-a visit from the opthamologist. Dr. Su removed a couple of the stitches keeping her right eye closed because they were basically coming loose, so she can pretty much open her right eye now! There is a little bit of scabbing on her lid, but he said it is just a normal scab and will fall off soon. Her eyes are continuing to heal well and look fantastic.

-work on getting her little room up to 35 percent humidity. Some of the hospital's maintenance crew was hard at work most of the afternoon trying to figure out if they could increase the humidity in her pod. It had been on 15 percent, which is normal for the hospital, but when I arrived this afternoon, it was up to 35 percent. However, it had dipped back down to 25 percent when I left, so we are thinking we might just need to bring our own humidifier in. Brenna's open crib is all ready and waiting for her though!

-lots and lots of cuddling from mommy, daddy and the grandmas! Grandpa and Papa are still too nervous about holding her :)

Brenna's a busy girl, getting so many things taken care of so we can bring her home!

One Month Old!

Brenna Girl is ONE MONTH OLD today!The doctors met yesterday to discuss her current status. They decided to take her PICC line out of her arm, which they are planning to do tonight, or at least as soon as they get to it.

Over the last ten days, she has been consistently gaining a little weight, which is great. She is eating like a horse, and I'm glad that we don't have to battle any eating issues at this point!

Her "scales" have come off pretty much everywhere except her fingers and toes, and some parts of her head. I'm meeting with the plastic surgeon tomorrow to decide if anything should be done about the tight skin on her fingers and toes. We want to make sure she is getting enough circulation there and is able to move them properly.

"I sleep with my mouth open like my daddy"

We'll keep praying for weight gain and continued skin success, so we can move toward discharge and coming home!

Planning for Brenna's at-home care

As we start planning more and more for Brenna's homecoming, I have to be honest - as excited as I am, I am also more than slightly terrified. Brenna's health care and skin care needs are so great, and I am so nervous about balancing all of those needs with all of Connor's everyday toddler needs. Going from one child to two children is hard enough, but add in all of the work involved with caring for Brenna's skin, and I am a nervous wreck.

There are so many questions that are popping up that we haven't considered until now. What humidity should we keep the house at and her room at? How do we avoid damage to our walls and windows due to the higher humidity levels? How do we wash her clothes so that the Aquaphor doesn't ruin them? Can she wear sunscreen? How do we keep her from overheating during the hot summer days? Can we use sensitive skin baby wipes or do we need to make our own to avoid harsh chemicals on her skin?

What has been a huge blessing during our journey so far is an organization called FIRST (Foundation for Ichthyosis and Related Skin Types) who put me in contact with some other families who have a child with Harlequin - one has a 7-year-old, one has a toddler and then we've also been talking to the famous Hunter, who is highlighted in this video that many of you have seen already :) She is now 17, and based on our few exchanges, has such a caring and positive attitude. Connecting with these familes has been truly a God-send!

They have explained their current skin care regimes, what they use to wash clothes and what humidity levels are in their homes.

We've been told that cotton is the most comfortable, breathable fabric for Brenna's skin. We should try to find clothes with snaps instead of zippers, which might tear the skin more easily. She will be prone to overheating in the summer, especially in her carseat, so we need to be very vigilant about that. And the list goes on.

I know that things will continually pop up, but I feel so much better with getting some of our questions answered and knowing that these families are here for us. Hearing their stories is so encouraging to us as we prepare to bring our baby girl home.

It's funny because when Connor was born, I was a complete wreck. My hormones were all over the place, my body felt like I'd given birth to 8 babies instead of one and every little "challenge" - like when he had to wear a bilirubin blanket when he got jaundice - felt like the end of the world.

When Brenna was born, I didn't even feel like I'd given birth; it was the easiest delivery I could have imagined. Obviously I was extremely upset during those early days, but I felt (and continue to feel) so level-headed as far as hormones go. I know that God was looking out for me and continues to give us strength each day as we look toward our family's future.

I don't have many Bible verses memorized, but one has always been my favorite. It's so simple and so true, and I have been holding tightly to it during the last month:

"I can do all things through Christ who strengthens me." Phillippians 4:13

Making more strides toward home

Brenna's eyes are continuing to heal, and the skin on her newly added lids are starting to "pink up" as the blood vessels form in the new skin.

She is still stitched closed, but she is trying her hardest to open them, especially her right eye! It won't be long now until she can open them all the way I think.Some big chunks of the old skin from inside her ear have also come out, so we're hoping that means she can hear a lot better. She will be getting a newborn screening test done soon. And then when she comes home, she'll have to get regular ear cleanings to make sure the thick skin doesn't build up again in her canals.
Brenna is officially off the antibiotics she had started taking the week she was born. The only meds she is currently taking are an anti-fungal medication to prevent yeast infection, and the acetretin, which is the medication that makes her skin "shed."

She is now averaging about 85-105 mL of milk every feeding (about every three hours). One ounce is equal to 30 mL, so she's eating the amount that Connor ate at 3-4 months, if I'm remembering correctly. She's still a tiny thing though, since she burns so many calories making skin. She's staying around 6 lbs, 4 oz.

Brenna is now is 45 percent humidity level in her incubator - all the way down from the 95 percent she was in during her first week! She's tolerating the humidity decrease quite well...look how good the skin on her back looks!
And with all of this progress, we've been hearing a very welcoming word lately: HOME!

"Try to do her treatment as much as possible so you know how to do it well at home."

"These are the occupational therapy exercises you need to do with her at home."

"Bring in her baby bathtub and some sleepers so we can get her used to that before she goes home."

Are we really moving so quickly toward coming home!?!?

Grandma Cuddles

After four weeks of the "look but no touch" restriction, we were told this weekend that Brenna's grandparents would get to hold their precious granddaughter in their arms!

I called my mom from the hospital to tell her, and she said, "Today?! I need to shower so I can come now!"

My mom

Evan's mom

Between Brenna getting to be held at every feeding, and held by both her parents and grandparents, this little girl is now going to have lots of the cuddle time that she loves so much! We know this will only help her to thrive and have a greater sense for just how much she is CHERISHED!

Why I Share

Recently, I've had so many people, whether through messages or from those at the prayer service last Sunday, thank me for blogging and sharing our family's story. While I am thrilled that so many of you are finding joy and inspiration in Brenna's journey, I have to admit that creating this blog and continuing it is purely personal. I always want this online journal to be solely about and for Brenna; with each day and each little milestone that Brenna hits, it causes me to reflect on why I want to share these celebrations publicly...

Plain and simple, I believe in the power of prayer. I believe in God and I believe that he answers prayers. Many of you have asked if you can pass my blog to others or add Brenna to your prayer chains - please do! There are literally thousands of people around the world praying for my little girl's health and peace for our family. I can't tell you how much that means to us.

Chronicling our journey online has also been an emotional outlet for me. Writing is something that I love to do. Putting my thoughts and feelings down each day helps me to keep perspective on my family and on my baby. Not only that, but it allows all of our family and friends to follow along and not feel as if they are "bothering" us with questions constantly.

But most of all I blog for Brenna and for other children like her. It is one of my many hopes from sharing her story that when you all see us out at the park or the grocery store, that you will not stare at Brenna's skin, but instead, smile at her beautiful spirit. That when you see any child with special needs, you will have an appreciation of how much love and understanding and courage his or her parents have.

When Brenna was born, Evan and I discussed how much we wanted to publicize her disease - what kind of details we wanted to share and whether we should post photos. I admit, it tore at my heart to imagine someone thinking unkind thoughts when they saw a photo of my precious child. But I have been amazed at the outpouring of love for Brenna - I feel like you all can see her sweet personality and the beauty of her soul without even having met her.

I have heard from so many of you who tell me you are sharing Brenna's story and photos with your children - THANK YOU. It warms my heart to know that your children are learning from the very beginning that everyone is born differently, and those differences - whether physical, mental or other - are something to be celebrated and appreciated.

I am hopeful that through one person's story, many more might realize the power of having faith in God and will celebrate all kinds of beautiful.

I L L!

I N I!

Thanks to my friend Amanda, Brenna is now representin' her future alma mater :)

Sweet girl is having another good day. Her little wounds behind her ears where the skin was taken for her eye surgery are healing so well...probably largely due to the fact that she is a skin-making machine. Her eyes still look very "beat up," but she is already trying to open them and peek out at us through her little slits. She doesn't want to miss a thing!

Brenna also gets to be taken out of her incubator during every feeding now, which we know she will love! She adores being held and cuddled, and we're thrilled she'll get more time being handled instead of having to stay in her bed all the time...

Due Date

Today is a little strange for me. Friday the 13th...or in my mind, January 13th - Brenna's due date. The date around which we base all of our plans and expectations.

Instead our little girl arrived 3.5 weeks early, which I've read is very common in babies with Harlequin. Several of the babies I've heard about were born at 36 weeks, just like Brenna.

Instead of a 2012 baby, we got a 2011 baby, just like Daddy wanted (tax credit!) And now she has been here for 25 whole days.

25 days of praying, praying, praying!

25 days of constant worry about infection and little celebrations at each new milestone.

25 days of daily visits to the hospital...sometimes two or three times a day. Add in daily visits from each set of grandparents, and Brenna is definitely the NICU's Hostess with the Mostess.
25 days of waking up in the middle of the night to an alarm and pump. Not fun. But so worth it.


25 days of finding a sense of courage and hope I never knew before.


25 days of experiencing the pure joy that Brenna has brought to our family.


In honor of Brenna's due date, I'd like to share her birth announcement that I had all designed and ready to send out upon her arrival...In the scheme of things, it became completely neglected, but I finally made some time today to pop in a picture and her birth stats. What a precious little nugget :)

Snowy Day

Today I had a rare moment of time to myself since Connor slept in a bit...I sat at the kitchen table with my coffee and watched the snow fall peacefully outside the window. For the first time, I thought about what it'd be like if Brenna was at home, and I felt a little wistful.

From day one, we have completely accepted her condition and know that the NICU is by far the best place for her for a long time. I haven't ever wished her to be "normal" because I know this is how she was created by God, and I love her uniqueness. I am also completely confident in and grateful for the care she is receiving at St. John's.

But just for a moment, I imagined her being home already - the heat and humidity cranked up in our house, all of us snuggled in our PJs all day long while the snow swirled outside.

Instead, Evan and I had to venture outside through the biting wind to the hospital to be with our baby girl. Nothing warms my heart as much as walking into her little room and seeing her precious face though.

Today, Brenna's eyes are a bit swollen from the surgery, but she seems to be doing quite well. She was given some Tylenol last night, as well as morphine twice for pain. But she hasn't had pain medication since 11:00 last night and hasn't seemed too uncomfortable. I think my little girl must have a high tolerance for pain!

She's been eating 60-65 mL of milk every three hours, so that's great. They are letting her just eat what she feels like - no more breastmilk fortifier :)

We lucked out when we were visiting - her neonatologist, opthamologist and infectious disease specialist all stopped by to see her, so we got to talk with each of them about how she is doing after the surgery. The doctors all thought she looked well, which we were so glad to hear! And we'll get to start holding her again, being very careful of the wounds around her eyes and ears of course.

Though not quite the snowy day I envisioned momentarily this morning, it was a great day as my sweet baby is on the road to recovery from her surgery and continuing to amaze us with her strength!

Successful Eye Surgery

We had quite the busy day at the hospital today as our sweet girl underwent what felt like a last-minute eye surgery.

When Brenna's body was developing when I was pregnant, her skin grew extremely tight, pulling her eyelids outwards so that they are flipped inside out. The hospital staff has done an excellent job in keeping her eyes lubricated and giving her antibiotics so that her eyes don't become infected.

Now that her tight pieces of skin are falling off around her face, her eyes are less taut and look much better. But she still cannot close her eyelids all the way (because of both the tightness and the lid itself wasn't able to grow like it should have), and her muscles in her eyelids and around her eyes aren't being developed because of this.

We received a call from the opthamologist, Dr. Su, just last night regarding eye surgery for Brenna. He had been in to see Brenna the week she was born but felt that her skin was still pulling her eyes too tightly to do anything at that time. He came by again yesterday and told us that he would like to do surgery on her eyes "sooner rather than later" because of the risk for eye damage.

"Sooner" ended up meaning this afternoon! Thankfully, we did have time to have a team meeting with Dr. Su, Brenna's neonatologist (Dr. Nimavat), and Dr. Conlon (her dermatologist), where we were able to discuss the goals of the surgery, the procedure itself, all of the risks involved and the recovery. After that meeting, despite how quickly the whole process developed, we felt very comfortable with the procedure.

Brenna being super cute before surgery :)

Holding onto Daddy's finger before heading to the operating room

The first step during the surgery was an eye exam so that Dr. Su could assess the health of her eye and see if there was any visible damage yet. We received word from the operating room after the exam that everything looked good, and they were going to go ahead with the procedure.

During the procedure, Dr. Su removed some skin from behind Brenna's ears and basically attached them to her eyelids in order to lengthen the lids to allow them to close. He then stiched the corners of her eyes shut. There is a very tiny amount of her eye that is not closed, to allow for light stimulation to the eye, but otherwise her eyes will be stitched shut for the next couple of weeks, until the stitches dissolve.

Based on how the first eye went, he was going to then decide on whether to complete the procedure on both eyes. Fortunately, absolutely everything went very well, and Brenna has two new eyelids!

I am so amazed at how tough and resilient little ones can be - she was such a trooper today! On my way home, I couldn't help but pause at the stoplight and look up, thanking God for such a seamless process and successful procedure, and for protecting my little girl during her first surgery.

Ups and Downs

When I went in to visit Brenna last night, she was wide awake and much fiestier than she had been all day. Our nurse said "I can't believe how much better she's acting!" Talk about music to my ears!

As of this morning, Brenna's blood tests are all still negative for infection - YES! She began to take a little milk again at her midnight feeding last night (10 mL) and was still doing well with eating that small amount this morning.

I guess I better get used to these ups and downs, but it just weighs on me so heavily when she's not doing well. I want to do everything in my power to make it right, and I want all tests to be done immediately to figure out what's wrong, even though I know that's not realistic. Having all of her numbers and stats right in front of our eyes makes us really scrutinize every little change, and I tend to worry at the first sign of anything wrong.

Since she was acting like she felt better last night, I got to hold her the entire time I was there. I felt bad telling Evan that - he was very jealous :) It had been a couple of days since I was able to snuggle her in my arms, and it was killing me.

We rocked, and I held her binkie in and sang to her. She was calm the entire time, although I could definitely tell she was hungry...she would start to doze off, and then her eyes would fly open and she would go crazy on her pacifier like she remembered that she wanted to eat :)

Between her alertness, hunger and negative blood tests (so far), I was so much more at peace last night and this morning. This little girl is really keeping us on her toes!

And I also walked in her room last night to see this... her first real bow in her hair! Talk about melting my heart :)