Harlequin Care 101

This post has been on my mind for a while. I've been wanting to document exactly what we are doing in our care for Brenna - for ourselves, for others who may be dealing with a similar condition and to educate anyone who is interested in Brenna's health care needs.

While applying emollients (Aquaphor typically) seems to be at the forefront of our care, I think the most important thing we are tasked with is preventing infection while still trying to maintain a normal life.

Bacteria is on everyone's skin. But the typical person has enough barrier on the outer layer of their skin to protect against this bacteria infecting their skin. Brenna lacks this barrier and will always be very susceptible to bacterial infections, like the staph infection she had a few weeks ago.

Hand washing is a big deal in our household. Before we pick Brenna up, we wash our hands or use sanitizer. We sterilize all of her bottle parts and pacifiers on a daily basis, first washing them in the sinking and then boiling the parts in a pot on the stove. We spray down both her baby bathtub and the big tub with a bleach mix after each of her baths to kill bacteria.

BATH

Brenna gets a bath every day. This helps her skin soften a bit and allows us to remove some of the excess skin that builds up. Her body produces skin about 10 times faster than normal, so it is a constant battle against this thick skin build-up every single day.

skin build-up on her hands

Each evening when Evan gets home from work, we start the bathtime routine. Usually her baths take about a half hour, and the entire time, we are working on every area of her body to remove excess skin. Some areas that are prone to build-up are her feet, armpits, hands (because she keeps them clenched so much), groin and ears. We spend the whole time with soft washcloths rubbing, typically in circular motions, to get the skin off. We've also found that simply using our own fingers works really well, as if you're rubbing off peeling skin from a sunburn.

We have to be careful though to just gently rub and not tear. Open wounds are always a concern for infection.

Brenna is not really a fan of this process. She hates to be naked, she often gets cold by the end of the bath, and I'm sure our persistent rubbing gets pretty annoying :) But it's a necessary evil that we have to stay on top of!

old picture in the bath - she looks so different with those plaques of skin!

Also, every other night, we add a tablespoon of bleach to her baby bath tub (so it's about like a swimming pool) in order to kill off any "bad" bacteria on her skin.

SKIN CARE

After her bath - and throughout the day - she gets coated in Aquaphor. We are so incredibly fortunate that Aquaphor has a donation program for people with skin conditions and they send us a certain number of jars each quarter. That definitely helps! We've also tried another emollient called Vaniply that doesn't have the lanolin in it that Aquaphor does. I'm still deciding which one I like better. I'm used to Aquaphor, but Vaniply isn't really greasy, which is nice too. I think we will use both until Brenna can decide which she likes better!

Typically, Brenna's treatment is done before she eats. We wear medical gloves each time we apply ointment or change her diaper to reduce the risk of infection. When I do it by myself, I will change her diaper, then put on a new pair of gloves to apply ointment. When Evan helps, we each take a task so we're not both using multiple pairs of gloves.

We keep the Aquaphor in a bottle warmer to try to make it more comfortable for Brenna. We all know how horrible it is to put on cold lotion! We then use our gloved hand to take out a big glob of the Aquaphor onto a piece of gauze. From the gauze, we then apply it to her body. Again, this helps to reduce infection risk.

We also make our own baby wipes for Brenna. We tried to use the sensitive skin variety of wipes from Pampers but it irritated her skin. So now we use mineral oil, natural baby wash and water on paper towels so that it is sensitive enough to not affect her skin.

We have a whole-house humidifier that we run when necessary so that her skin doesn't get too dry, as well as a small one for her room. Thankfully, it's been so warm and more humid this winter that the humidity in our house has been really high! There is definitely a noticeable difference in the condition of her skin when the humidity is high vs. low.

LAUNDRY

Brenna is very hard on clothes. The Aquaphor seeps into the fabrics and as a result, a lot of her clothes get really "heavy". Cotton is definitely the best. My favorite brand so far is Little Me - all of her Little Me sleepers hold up really well to the Aquaphor...and as a bonus, many of them come with matching hats :)

We do have to be careful with her wearing hats and tight-fitting socks for too long. If her skin stays too moist, the scale will build up easily. It's definitely an interesting balance to find: keeping her skin moist enough to stay hydrated and not crack open, but dry out enough that we can get the excess scale off in the bath so that ridges don't start to form again. I love to keep her in hats because it decreases the amount of Aquaphor that gets on everything - not to mention she looks so darn cute in hats! - but for a few hours each day, I leave her hat off, so that her head can dry out a bit and we can remove that extra dry skin.

To get the Aquaphor out of her clothes, I soak it in hot water with Oxi Clean for a few hours before washing it in hot water with Oxi Clean and free-and-clear detergent. Sometimes I have to run a load through a second cycle in the washing machine. I am so thankful that one of Evan's coworkers and her husband installed a tub sink in our basement so that I can soak Brenna's clothes easily every day (shoutout to Becky and Brett!) When we first brought her home, I was carrying buckets from our bathtub to the basement!

I usually try to change her outfit about four times a day because they get pretty gooey. The sleepers with snaps are by far my favorite because of how easy they are to get on and off, since we have to take everything off to apply the Aquaphor. I get very nervous with zippers, which might tear her skin, so there are minimal zippers in her wardrobe!

HEALTH

Brenna is still taking the oral retinoid that she was started on during her first week of life, but we have decreased the dosage and will continue to do so until she is off it completely. It's called acitretin and is similar to Accutane. It helps her skin "shed" more quickly.

We also take her temperature throughout the day. Brenna's body has a difficult time maintaining a normal temperature because her skin doesn't regulate her temperature like ours does, so we constantly try to make sure she's not getting too hot or too cold. Often her temp will get lower at night (in the 97 range for example) and so we'll bundle her up a little more. And additionally, a higher temp can mean that she is starting to battle an infection, so we have to monitor that.

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Wow... so I knew this would be a longer post, but didn't realize it would be THIS long! The information just kept pouring out of me :) If you've read this far, props to you! I'm so glad to have this down now to be able to look back on and maybe serve as a reference to others...

Facing the facts

Now that I feel like I have a decent grasp on the science behind Brenna's condition, I am also thinking about things more with my emotions.

I am looking at her and thinking, "I'm sorry." I'm sorry we caused this. I'm sorry that we unintentionally made life a whole lot harder for you. I'm sorry that you have had to go through so much in such a short time already...and this is only the beginning.

It's truly amazing the effect that one little error on one little gene can have on the body.

Additionally, as much as I feel like Brenna is our little miracle angel, I am feeling like Connor is our miracle child too, because he beat the odds of inheriting Harlequin Ichthyosis. Out of all of the families that we have connected with who have children with Harlequin - about six that I can think of off the top of my head -there are none who have any additional children. All of the families we "know" were met with the 25% chance of two gene mutations on the first try. That's almost unbelievable to me and makes me feel even more grateful for two wonderful children.

As for the future of our family, my heart is a little heavy because I have always always always wanted a bunch of babies. My best friend Kristin had eight children in her family, and I spent so much time at her house growing up. It was always full of people and laughter and activity, and I loved every second of it and wanted that for myself. (So maybe not that many :) but closer to four or five!)

Evan was always content with two children but said that the door was at least open to more after the first two. Even if we had decided on just two, we figured that the decision would be ultimately made at least a couple of years down the road.

But a 1 in 4 chance of such a severe condition is a gamble you just don't take. Not for your family and not for your future child who might have to live with it. So it feels like the possibility for more children is a door that is not just closed now, but slammed suddenly in our faces.

While I feel beyond blessed to have two beautiful children when so many couples can't have any, I am also feeling a little disappointment in accepting this new reality that is contrary to my lifelong hope and expectations of a bigger family.

However, I know that God knows what he's doing, much more so than I do. And I am sure that these two will keep me busier than I ever imagined :)

Runs in the family...

Two days after Brenna was born, her cord blood was sent to the only diagnostic lab in the country that reads the gene ABCA12 that is associated with Harlequin Ichthyosis. Eight weeks later, her results showed two different mutations in her gene.

So a few weeks ago, Evan, Connor and I got our blood drawn to test for these mutations.

From my understanding (which is minimal at best - my lowest score on my ACT by far was the science section), everyone receives genes from both parents to make up their entire genetic coding. These genes are like a set of instructions in making the different proteins in our body.

In Brenna's case, her body began forming, and when it came to the ABCA12 gene, it simply stopped because of the "errors" in the instructions. The ABCA12 gene is responsible for forming the ABCA12 protein that is essential in developing the outer layer of skin (the epidermis). So Brenna's skin lacks this obviously important protein.

Brenna's two mutations are S1249X and R714X. Basically there should be a S and R where the Xs are. Our results showed that I have the S1249X mutation, and Evan has the R714X mutation.

Because we both have one unaffected gene, it acts as a backup and our bodies still produce enough of the protein so that the mutation doesn't affect our skin.

And we learned that Connor is also a carrier; he has my mutation, S1249X. I am two for two in passing along my bad gene vs. my good one. Of course, the chances of him marrying someone with this mutation are incredibly tiny, which is very comforting at least.

So every child of ours has a one in four chance of having Harlequin Ichthyosis. (remember high school biology?!)

- 25% two unaffected genes

- 25% unaffected gene from me, mutation from Evan

- 25% mutation from me, unaffected gene from Evan (like Connor)

- 25% two mutations, resulting in Harlequin

I had really hoped that Connor was unaffected, but we are feeling a little relief now, knowing these definite results. It's a lot to wrap my head around, and I was happy to have the chance to meet with our genetic counselor today to get a clearer understanding. In a sense, it provides a little closure for us about Brenna's condition and why her skin is the way it is...

This picture of Brenna...

...really reminds me of this picture of Connor when he was the same age! :)

Thursday Thoughts

Here's what's going on with us this week...

1. We weighed Brenna again on Tuesday, and she tipped the scales at 7.62 pounds - up from 7.1 pounds last Monday!

2. I am down to pumping once a day now - in the evening - and even that barely makes half of a feeding. I think my days with my beloved pump are very numbered. I anticipate putting it away for good this weekend.

3. As a follow-up to my post on Rare Disease Day, my video was by far the most-watched in the MarbleRoad competition, with 12,750 views right now! I am sincerely AMAZED at how many of you watched and shared our video. Because of this, we were awarded $450 from MarbleRoad for assistance with medical costs - thank you!

4. Unfortunately MarbleRoad wasn't interested in pursuing publication of my story inspired by Brenna. But I think if anything, I will create a little book for her myself, so that she can always have it to read!

5. Today is the final dose of Brenna's antibiotic, clindamycin, for her staph infection. Hopefully the staph, and all other infections, stay far away for a very long time!

6. Brenna has been sleeping so great at night, much to the delight of her parents. Last night, she ate at 9:30 pm, 3 am, and 8 am. Such big stretches are not the norm yet, but she at least usually stretches her feedings 4 or 5 hours at night, and she goes right back to sleep in between.

7. My big girl is smiling now! It's not often (but then again, Connor was a very serious kid too, so my kids just might not be smiley babies) but when she does, it melts my heart completely. She is very expressive and alert now, and loves to be part of the action. She doesn't mind observing from her bouncy seat usually, as long as she's in the same room with everyone and can see what's going on.

8. The artistic piece, "Home", was raffled and raised over $200 for FIRST! Thank you so very much to all those who participated in the raffle!

9. I am very slowly easing my way back in to working. I am going to completely re-structure the way I run my photography business this year because family comes first, and my family very much needs me right now. But I have devised a plan to allow myself to still serve my clients on a very limited basis and carry out some of my creative energy and passion through my photography. I am excited that I will have some opportunities this year to continue the success that my studio has already achieved!

10. This weekend, my parents are watching the kids while Evan and I take a little drive out to his grandpa's restaurant, Lucky's, in Ashland, about 45 minutes away, for a lunch date. I am so looking forward spending some one-on-one time with him!

Happy Thursday!

Lessons

Brenna has taught me more in three months than I have ever learned in my previous 28 years. And I am trying to soak up each of these "lessons" that she has brought into our lives, to reflect on them and use them to make myself a better person.

Brenna has taught me about prayer. About what it truly means to talk to God. To have a relationship with God. And about what it means to come together with others in prayer. The power of prayer is incredible, and prayer has played such an integral part in Brenna's life so far.

She has taught me about faith. About relying on faith and faith alone. About what it means to have your faith tested on a daily basis. About realizing that, above all, turning to God and putting everything in God's hands is the only way to stay strong and feel peace.

Brenna has taught me about worry. Not just the general worry of a mother where you hope that your children will be safe and happy, but about a constant worry, anxiously wondering if a high temperature or change in skin means an infection is present. About a desperate, agonizing worry, wondering how you might ever plan your own child's funeral as you watch her fight for her life.

Brenna has taught me about happiness. How our attitudes play an essential role in our happiness. About finding the joy in the little things, celebrating milestones that would be meaningless to other families, like Brenna getting to wear clothes for the first time or learning to shut her eyes completely after the last original plaques of skin came off.

And indirectly, she has taught me about community. What it means to be a part of a strong community who stand behind each other. What it truly means to have others rally around us during the lowest point in our lives, to help hold us together as we faced some of the biggest challenges we hopefully ever will face.

What a special gift we have been given, and I pray that I will always be able to see all of the lessons both of my children will continue to teach me.

Brenna Helen Marie is THREE months old!

My Sweet Brenna,

Today, you are three months old! And I think it's safe to say that in three short months, you have made quite an impact on the world, and on our family :)

Your spirit and spunk inspire me every day. I have no doubt that you are going to grow up to do great things!

Sassy lil thing

This season of my life is so challenging, so joyful and so incredibly special. I continue to be overwhelmed both by the sheer responsibility of your care and the amazing blessing that you are to our lives.

I love you more than can be expressed by words, my kitten. Happy three months, beautiful girl!!

Sunday at the Park

We've been breaking temperature records left and right here in Illinois with highs in the low 80s for the last week or so. It's really been so refreshing to get out of the house more!

Today we took the opportunity to have a picnic lunch at Washington Park and then go feed bread to the ducks and geese...

Brenna thoroughly enjoyed the outing too :) This is actually a big step for her because she typically hates her carseat (I thought all babies loved the carseat!? not this kid.)

We finally got a double stroller, purchased from another family we know, and I am so excited to now be able to take walks with both kids. We have a relatively open week, aside from a couple of doctor's appointments (of course!), so with the weather expected to stay warm, I'm hoping to ditch the house a few times in favor of some walks around the neighborhood! These bits of normalcy are becoming more frequent, and I am so glad :)

Updates

Based on the questions I've been getting lately from people, I need to update more often about things I post about originally!

First and most important right now is Brenna's weight. Monday she passed the 7 pound mark, weighing in at 7.1 pounds....and last night's weigh-in produced a result of 7.3 pounds! She's a beast :)

Even though Brenna still doesn't even weigh as much as Connor did when he was born ( 7 lbs., 7 oz.), she seems bigger to me though. She definitely seems to be getting longer and has even stretched out of a couple of her newborn outfits.

As you might notice from this photo and others I've posted, Brenna's limbs and other areas of her body are still very rigid and clenched from not having been able to move in the womb because of her tight original skin.

She physically can extend her arms and legs and raise her arms above her shoulder, but it's a struggle to get her to do so usually, especially raising her arms up. She also clenches her fists most of the time rather than opening her fingers.

We are working with her occupational therapist on some issues like this, and her plastics doctor is keeping an eye on her movement as well because her skin can break easily where there are joints that don't get extended, which can cause wounds that don't heal and impact her joints and muscles in the long run. I am trying to be diligent about keeping her joint areas moist to help prevent the cracking skin.

When she's awake and alert, we work with her to extend her legs, which she has been doing a lot more often, as well as extending her arms down and up above her head, which she really fights and gets mad about :) We also massage the palms around her thumbs to help her fingers extend and hand open up, which can be a challenge too - baby girl has quite the grasp!

As for her eyes, they are looking fantastic, and she is finally able to close them all the way sometimes when she's sleeping! We're not having to put in eye drops as often (maybe 5 times a day vs. 8) because they are staying much more moist due to this recent development.

As long as we can keep our girl healthy, she seems to be progressing well again! I'm not willing to try any other kinds of formula for a while, so hopefully she'll be able to pack on the pounds with straight breastmilk now. I'm only pumping twice a day now (early morning and night) and we're dipping into our stockpile of milk from the freezer.

On a whim, I decided that maybe I'd try to nurse her again...so we gave it a go for about a day, and she actually seemed to like it fine...but then she landed in the hospital with staph and that threw a wrench into those plans.

At this point in time, I'm OK with going the bottle route and getting donated milk from some moms I know who are certified donors. We're also working with her speech pathologist to ensure that between her positioning, sucking and swallowing, she's conserving as much energy and calories as possible. She's still a good eater and eating less amounts but more often, which seems to be working well...except at night when her mother really wants some sleep!!!

Brenna in action

When I posted my video in honor of Rare Disease Day, many of you commented how nice it was to finally see Brenna on video, instead of just photos of her! So for your viewing pleasure, I wanted to share a couple of recent videos I've taken of my little kitten...

My 2 and a half year old

Yesterday, our big boy turned two and a half! Which means he's now closer to 3 than he is to 2...sigh.

It's now very hard for me to remember what life was like with just one baby. Or more like how much easier it was with just one baby :)

Connor and I are best buds. BFFs. Besties. To say that he's a mama's boy is an understatement. There is just something about the relationship between a mother and son that is insanely special.

When we found out we were expecting again, I was so excited, but a little anxious too. I've heard people say they were nervous about how they could possible split their love between two babies, but that wasn't the case for me. I have always wanted a ton of kids, and my heart was just bursting with love.

Personally, for me the issue was this: I happened to think my son is the most beautiful, smartest, most perfect child to ever grace this earth...How could another child compete with that? Could there be two most perfect children to ever grace the earth? (The answer is yes, by the way.)

Connor has exceeded all of our expectations when it comes to Brenna. When we are doing her treatments or baths, he realizes we are busy and plays by himself in his room. He never seems bothered by her crying. He has yet to throw a fit regarding us giving her attention or act out negatively towards her. And as of late, he now will hold up a toy or stuffed animal and say "look Brenna!" or bring her binkie to her if she's crying. (Toddler germs all over the binkie = not so helpful :) But we won't tell him that!)

I have to be completely honest - occasionally I think about how we have completely turned his world upside down. Not just with a new baby right now, but for the rest of his life. Children can be so cruel, and he has a sister who looks very different. It pains me to not only think about mean things that kids will say to Brenna, but also to Connor.

But I remind myself that no child is immune to teasing, whether they have a skin disorder or wear glasses or are very short or have a learning disability or talk with an accent. The list goes on and on. And I know that Evan and I are doing and will continue to do the best that we can in teaching our children to be strong and compassionate individuals, to educate those we meet about Brenna's condition, to value everyone for their uniqueness. And to know that our family will always be there for each other, no matter what.

Brenna is teaching us all a lot about life, not the least of whom is her big brother. I hope and believe he will grow up to be one of her biggest fans, supporting her and helping to guide her through life. And I have no doubt that she will think he is the best thing since sliced bread. I know I do :)

Finding our new normal

I am now finally at the point where I feel not only very comfortable with caring for Brenna by myself, but also very happy with my new normal.

I've said before that I am a planner, I like things in order and I like to run a very organized household. Well, all that has flown out of the window, and finally, the point has come where I am not bothered at all by a messy house, by this chaos that is now our lives. I am too busy loving on my babies! I would much rather sit on the couch and cuddle with Brenna or read "If You Give a Pig A Pancake" with Connor a million times in a row than worry about when I'm going to be able to get the dishes done.

Playing "doctor" :) (note the bandaid on his arm!)

The weather continues to get nicer and that really lifts my mood a lot too. You can't help but feel good when it's 70 and sunny out in March!

I'm looking forward to the day when I am able to plan our meals, organize and do "normal" things with both kids again. I will be forever grateful for all those who have helped us out during the last three months - you truly will never know how much that means to us - and I am still so grateful for the meals still coming in because even now, I don't know how I would add dinner prep into our daily schedules...but I can't wait to be more "independent" again because it will mean that things have settled down. Boring is a good thing!

Brenna is doing so well still - her skin looks beautiful, and she's back to her laidback personality. I'm pretty sure she went through a growth spurt over the weekend. She was awake every 2.5-3 hours wanting to eat, when typically she will stretch between 4-5 hours at night. We've been so lucky - she's always been a great sleeper. My theory is that she is glad just to finally be left alone since she was constantly being poked and prodded and checked every few hours at the hospital.

We have an infant scale at home now so we can monitor her weight. I'm looking forward to weighing her tonight after she ate like a horse all weekend. Here's hoping for some weight gain!

I washed a bunch of 0-3 month size clothes today. I'm excited that she's finally moving toward this next size. The outfit above is 0-3, and it's definitely big but I think it works!

Every day my babies prove to me that I can love even deeper than I ever thought possible. I am feeling so blessed during this season of our lives to have such an incredible family and amazing community in which to raise my kids.

"Home", inspired by Brenna, to benefit FIRST!

A while ago, a classmate of mine from high school contacted me - she is the gallery manager for the Prairie Art Alliance Gallery II, and she was interested in getting some local artists together to create a collaborative piece inspired by Brenna.

I absolutely loved the idea! She said she wanted it to be like Brenna - "light, sweet, beautiful and full of hope." :) The artists that came together for the project are some that are a part of The Pharmacy, a collective studio and gallery for local artists.

One of the Pharmacy's artists, Adam Perschbache, stretched a canvas to 3' x 4' for the piece. Then Jennifer (my old classmate) and another artist, Felicia Olin, put together the details, abstract and texture. I think it turned out so beautiful!

One of the details is a little butterfly - very representative of Brenna :)

More details...

Tonight, March 10, the Pharmacy is hosting its 2nd Group Art Show at the Pharmacy Warehouse (1022 S. Pasfield) from 6 to 9 p.m. Work of the Pharmacy artists will be exhibited - all the material is juried, so the group itself decides and critiques each of the pieces.

Brenna's piece, called "Home," will be on display and will be raffled off. The proceeds from the raffle will be donated to FIRST, the Foundation for Ichthyosis and Related Skin Types for ichthyosis research. I am SO excited about this!! Ichthyosis in general (and Brenna's specific type especially) is so rare that there is not a lot of funding for research, and FIRST does such a wonderful job of advocating for and connecting those affected by ichthyosis.

We greatly appreciate the support from all those who are attending the art show tonight, and are especially thankful to Jennifer Snopko for coming up with the idea and helping it all come together in support of Brenna and FIRST!!

Positive for Staph

Unfortunately Brenna's cultures came back last night positive for staph infection in both her skin and her blood. The good news is that she continued to show improvements from the antibiotics, so the doctors were inclined to believe that it was a sensitive strain that was able to be treated with her medication.

We discussed both last evening and this morning about how long she should remain hospitalized, and both Dr. Conlon and Dr. Kink, the pediatric hospitalist, felt that Brenna staying another night probably wouldn't make much difference on her road to recovery and they also felt more comfortable sending her home rather than staying in the hospital where she was at risk for more infections....so we were discharged this morning!

I have been a nervous wreck since Monday morning, but finally yesterday afternoon, I started to feel good about the whole situation. The difference in both Brenna's skin and her disposition is very noticeable, even after just a couple of days.

On Monday, when we checked in, Brenna's skin was very delicate and had lots of little open wounds on her face...

Here is the back of her head, with more raw areas with blood

While we were at the hospital, Evan and I were noticing how similar Brenna's open wounds looked to children who are born with EB (epidermolysis bullosa, another very rare and severe skin disease.) When we brought it up to Dr. Conlon, he told us that staph actually affects the protein in the skin that "holds" it together - which is the same protein that those with EB are lacking. That's the reason that Brenna's skin had become so delicate and opened easily.

Thankfully, those open areas are healing up now, and her skin is getting back its thickness. I never thought I'd be glad to see her scales coming back again! :) We are thanking God that she has seemingly overcome yet another challenge in her short life.

I asked Dr. Conlon how she might have gotten staph in the first place. He said that staph is everywhere, and simply because of Brenna's skin condition, she is more susceptible to being affected by bacteria like this...as was proven this week.

It's easy for us to wonder if there was something we could have done to prevent this...but at the same time, we refuse to keep her in a bubble. We are of course as sterile and sanitary as we possibly can be, but we also want her to live as normal and happy of a life as possible too, and not feel completely restricted and limited because of her condition.

She's a little trooper, so we have faith that if more infections come her way, she'll continue to be a fighter!

Suspected Infection

I feel like all I did was blink, and Brenna went from having a fever (that we thought was probably related to getting her vaccinations) to being admitted to the hospital for a probable infection.

As I wrote on Friday, she started running a fever of around 102 degrees and the high temps stuck around the whole weekend - though it came down to normal with the help of Tylenol, it would still climb back up each time the medicine wore off.

I spoke with her doctor's office this morning, and when I told them what her last two temps had been, they ordered us to the hospital. It was at this same time that I was calling Dr. Conlon's office (her dermatologist) because her skin was rapidly worsening.

On Saturday, we had noticed during her bath that Brenna's skin seemed a lot more "fragile," for lack of a better word. Typically, we can scrub her scales pretty vigorously, but with just a gentle scrubbing, we both opened up different spots on her skin that began bleeding.

Yesterday, her skin began to look a little raw, especially around the diaper area. Then by early this morning, there were little open wounds that had just appeared overnight on her face, on her head, on her torso. By the time we were admitted to the hospital, quite honestly it looked like her stomach and back had whip marks.

We are currently waiting on results of a blood culture and skin culture...but after examination from Dr. Conlon, he strongly suspects Brenna has a staph infection. And that worries the heck out of me.

Thankfully, antibiotic medication was started right away, and we're also using a topical antibiotic on her skin. I am PRAYING that we caught it early and that it hasn't spread to her blood at this point.

My little angel has been through so much already. I am asking for prayers that she keeps showing us her fighting spirit.

The Opportunity to Trust

It's already March, and that leaves me feeling like the world has been flying by as our lives this winter have revolved around the NICU and learning to care for our little girl. There hasn't been time for much else!

Easter will soon be here, which means that the Lenten season has begun. I saw a lot of discussion from people on Facebook and Twitter about what they were giving up for Lent, and for me, nothing seemed to stand out as something that would be sacrificial, meaningful and strengthen my relationship with God. When it's a stretch to give something up, it just doesn't really seem like a sacrifice in the first place.

Instead I'm taking this season to make time to reflect - even if just for a couple of minutes a day. My mom gave me a daily devotional called "Jesus Calling" by Sarah Young, and I absolutely love it! It's written from the perspective of God, and so far, it is really hitting home for me.

Recently, I read an entry about trusting the Lord's plan. Specifically, it pointed out that the low points in our lives are "opportunities to trust God." What an awesome way to look at it and the perspective I'm constantly trying to embrace - to see each challenge in my life and each difficulty as simply an opportunity to put my whole trust in God's plan.

Though this blog might suggest otherwise, I'm a pretty private person typically when it comes to my faith and my relationship with God. But I have felt very comfortable putting my thoughts out here after being given such a special gift in the form of our daughter. With her, each little milestone and each challenge we face has really caused me to reflect and has strengthened my faith and led me to share my feelings.

When it seems like the doctors appointments are never-ending, when it seems like every time I turn around it's time to do bath time or Aquaphor treatment, when I feel like occasionally I just want to cry from the enormous responsibility of it all... I'm challenging myself to look at every "valley" as an opportunity to trust God and his incredible plan for our family!

I constantly remind myself that this is, most likely, the most difficult time we will face as a family. Quite frankly, in my opinion, the newborn stage is not fun. But soon she will be older, interacting with us, sleeping longer at night...and hopefully we can look back at the ups and down of this time and laugh :)

Lil Peanut

Brenna's two-month wellness check-up was on Wednesday. She weighed in at 6 lbs., 9 oz. and 20.5 inches.

That is the 1st percentile for both height and weight. My little peanut. At least she is on the charts? :) By contrast, Connor was 13 lbs., 4 oz. at two months (85th percentile)!

Her body takes up so many of her calories when it over-produces her skin, but poor thing, it's not all her skin's fault. With getting the stomach bug and dealing with our formula mishaps, she hasn't had a fighting chance to gain weight and grow. And now I think she is dealing with a bit of reflux, based on the amount of spitting up she's doing and how irritable she is during feedings.

It is starting to get hard for me to see other babies who are her age who are growing and hitting developmental milestones, like smiling and pushing up with their arms and lifting their heads. Even though Brenna spent the first 5 weeks of life lying on her back in the NICU (and therefore not doing "tummy time" and other activities), we've become determined not to let her fall too far behind, so this week I've tried really hard to make time to do her occupational therapy exercises and increase her range of movement and further help her muscles develop.

Brenna also got her two-month vaccination shots on Wednesday...which led to a low-grade fever...which then, we think, led to a fever of 102 this morning. We are still taking her temp in Celsius since that's what we got familiar with in the hospital. When the thermometer read 39 degrees this morning (37 C is 98.6F), we freaked and I grabbed another thermometer to double-check.

We brought it down with Tylenol, and then went to see the doctor, who said she otherwise seemed healthy and just to keep monitoring it. Fortunately it has stayed down through this afternoon, so here's hoping! He also prescribed Zantac for her suspected reflux and so far, she seems to be spitting up less even after just one dose of it.

Whew, this little girl is sure keeping us on our toes. I'm praying for a non-eventful weekend before our millions of doctors appointments next week!

By the way, THANK YOU all for such an incredible showing of support by reading my post about Rare Disease Day and watching our video!! I am blown away by the amount of people who have shared it on their Facebook and Twitter pages and by the number of views we now have!! I also want to give a shout-out to my friend Crista, who helped me put together all of my photos and footage...it helps to have friends that know what they're doing when it comes to video editing! :)