Eating Battles

We began fortifying Brenna's milk to make it even more calories last week with high hopes that it would help her pick up on her weight gain and growth.

Instead, she started eating less and less. After two days, I switched back to straight milk with no added formula to see if she would increase her consumption, and she did. She's eating enough to stay hydrated, but definitely not enough to grow. Whether the increased density was filling her up, or maybe it tastes different, or a whole other reason, the point is that what we're doing is not working.

It's always something with this girl, isn't it? This might be one of the most frustrating issues for me, though, because we have literally no answers. Her CT scan didn't show anything wrong, which is good on one hand, but on the other hand, it leaves us wondering what to do next.

Feeding time has become a battle for me, as I try everything I can think of to get her to eat just a decent amount - from switching her incline position, to giving her breathing breaks, to burping her at varying intervals. It's frustrating, stressful and oftentimes takes up an hour of my time. An hour of eating every 3 hours is way too time-consuming, not to mention usually unproductive, especially when I have another child who needs me too.

We are working with specialists across the board - ENT, speech therapist, dietitian, neonatologist, pediatrician, dermatologist - and we are starting to very heavily consider a gastric feeding tube, or g-tube, which would be a tube on Brenna's belly that would have access straight into her stomach. This way, she would be able to eat what she can and wants to, and we can give her the rest of her feedings through the tube.

These calories are so necessary for her to continue to thrive, grow and develop correctly. We weighed her last night, and between all of her gains and losses over the last two months, she now weighs almost exactly the same. In two whole months, there has been no weight gain. This really concerns us, and we feel like she will only continue to fall behind developmentally if we don't take action soon.

We have known for a long time that a g-tube was very likely, but I always thought we wouldn't need to make that decision until later, like maybe her toddler years. The idea of a g-tube has always made me a little apprehensive, mostly because of the possibility of infection and of the overall general care that accompanies it.

But I'm at the end of my rope when it comes to Brenna's eating. I don't feel like there are any obvious answers or options at this point to solve the problems she's facing in gaining weight and increasing intake. So I have been praying about it, and I finally feel very comfortable with putting in the g-tube if that is the course that we need to take. Evan has been on board with it from the beginning, arguing that if we would need to eventually, we might as well do it now. But I wanted to explore every other possibility that we could in order to avoid that procedure if there was a chance she could gain weight on her own.

But she's not, and I'm ready to take this next step if that's what we need to do.

If anyone else has experience with a g-tube, I'd love to hear about it!

Brenna's TV debut

Brenna's television debut aired on Thursday evening on WAND-TV out of Decatur, which is about an hour east of Springfield. We really enjoyed working with Paula Thornton, the reporter, and while we were both hesitant about being on camera (because as you can see, we're super awkward!), Paula and Adam, the videographer, really made us feel comfortable.

Brenna brought her A game for the camera - she was hamming it up the whole time, and at one point, Paula even had to stop our conversation because Brenna was squealing and cooing so loudly you couldn't hear what we were saying :) I was glad she was on her best behavior for the news!

Check out the story here...

Wandtv.com, NewsCenter17, StormCenter17, Central Illinois News-

For Me Friday: My Reading List

Through all of this craziness that has become our daily living, I strive to keep myself in perspective. Obviously my children and my family are top priority, but I don't want to lose sight of the activities that I enjoy myself, particularly those I can do at home (since I don't get out much!)

Out of this sentiment of this was born my latest blogging idea: For Me Fridays. If you're here just to check up on Brenna, feel free to skip over :) but I also would love to document what's going on with me. So each Friday, to keep my goals on track and keep me accountable for "me time", I'll post about my various current interests, projects, whatever.

First on the agenda: reading! I am finally getting/making some time to read again!

I have always been a voracious reader, but since having kids, I'll often choose sleep over reading at night. But I feel more intelectually stimulated and more challenged when I read.

For Mothers Day, my family got me a Kindle. I was unsure if I would like it at first, because I am a huge fan of an actual, page-turning book. But it's incredibly convenient because when I'm feeding Brenna, I can hold the Kindle in my free hand and "turn" the page with the tap of a finger.

I also joined GoodReads, because I enjoy keeping track of my reading progress - both books I've already read and ones on my to-read list.

Here are some on my completed list in the last year or so:
Half Broke Horses by Jeannette Walls
The Swan House by Elizabeth Musser
The Confession by John Grisham
Purple Cow by Seth Godin
The Shack by William P. Young
Heaven is For Real by Todd Burpo and Lynn Vincent
Prisoners of Hope by Dayna Curry and Heather Mercer
Richest Man in Babylon by George Samuel Clayson
Something Blue by Emily Giffin
Love the One You're With by Emily Giffin
On Mystic Lake by Kristin Hannah
Firefly Lane by Kristin Hannah
The Pioneer Woman: Black Heels to Tractor Wheels by Ree Drummond

I recently finished The Paris Wife by Paula McLain, and I was a bit torn about it. It kept my interest as a historical fiction, especially being about a writer, but although the beginning was very good, it definitely got a little slow to me.

I also just finished the Hunger Games (yeah, I know I'm behind on the trend, but I can't bring myself to shell out money for a book that I'll read once, so I'm a big library-goer...which usually means having to wait to read the new releases :) ) And now I'm really looking forward to reading the second two of the series! I'm also on the Kindle library waiting list for Fifty Shades of Grey.

One thing that I excitedly discovered is that you can download some old classics for free. I just started A Tale of Two Cities, and I've got others like Pride and Prejudice and Jane Eyre waiting.

Others on my to-read list include:

The Art of Racing in the Rain by Garth Stein
Baby Proof by Emily Giffin
Same Kind of Different as Me by Ron Hall
EntreLeadership by Dave Ramsey

If you haven't read them yet, I highly recommend The Glass Castle by Jeannette Walls and The Help by Kathryn Stockett. I read both of those books last year, and they are two of my all-time favorites!

Any others to add to my to-read list? I love suggestions!

Thursday Thoughts, Vol. 6

Highlights from the last week:

1. Brenna's CT scan went extremely well. She ate the most she's ever eaten about 5 hours beforehand (185 mL), and then it ended up that she didn't even need to be sedated. So then she got a bottle right after the scan, and all was well. We fed her in the lobby of the Children's Hospital before heading home and got stopped by no fewer than 4 people who recognized her from the blog or the newspaper article  a few weeks ago :)

2. Speaking of the scan, it showed no masses or obstructions, but did show a flattened nasal bone. Our ENT is on vacation until August 6, so we're going to have to wait until she can read the scans and give her input on whether we need to take action. The Prevacid and Nasonex seem to really be helping, but she still pulls off of her bottle while eating and takes deep breaths, as if she can't breathe well through her nose while she's chugging the milk.

3. We got the opportunity last week to take Connor to meet a local racecar driver, Justin Allgaier. Justin is sponsored by Brandt Consolidated, where Evan's uncle works, and they hosted a meet-and-greet event with Justin. It rocked Connor's world to get to see Justin's race cars, who, coincidentally enough, look exactly like Lightning McQueen and therefore, Connor was convinced he was meeting Lightning's driver!

4. Brenna has hit a plateau on the weight gaining front, and we're exploring options to boost that girl's numbers. Starting today, we're now fortifying her milk to make it 24 calories, instead of the 22 that it was. 

5. For those in the local viewing area, check out WAND on channel 10 at 10:00 tonight to see a few familiar faces live and in action ;) I'm going to have to stay up past my bedtime to watch! 

Nicknames

Name: Brenna Helen Marie

Also answers to:

Brenna Boo Boo (or Boo Boo for short)

Doodlebug

PumpkinDoodle

 Pretty Girl/Big Girl

Baby

Peanut

We love a good nickname around these parts, can you tell?

Blessed by Brenna: the book

Writing this blog has been such an emotional outlet for me and has allowed me to document all of the ups and downs since Brenna's arrival into our lives.

From the time I started the blog, I had such an urge to also write a book someday....and finally yesterday, I decided to make some time to sit down and write.

I don't have any idea where this will lead...but I do have a beginning and four pages written now, so that's progress in my opinion! I am completely enjoying this process so far, so I hope one day it ends up as a published hard copy! (or soft cover, I'm not picky :) ) But if not, it will be an amazing journal for my children to hold on to.

On that note, if any of my blog followers have great connections into the publishing world, get a hold of me ;)

Judging appearances

Occasionally, on a bad day, it's hard for me not to "reverse-judge" people based on their appearance. Instead of judging them negatively, I judge too positively.

I'm out at a store and see other families, and I think: "Look at them, with their perfect hair and their perfect skin. Not a care in the world."

It's completely unfair. It's unfair to them and unfair to me. At first the thought would just creep in. And now, I am trying very deliberately to fight judgments like that. It will only lead to unnecessary bitterness.

I remind myself that just because you can't see someone's problems, it doesn't mean they don't exist.

To see someone in a wheelchair, to see a family with a child with Down syndrome, or to see an amputee - it is a little more obvious that there are challenges that people with physical/mental disabilities must overcome in their lives on a daily basis.

But that family, the one that appears so perfect? Maybe their child has severe learning disabilities and struggles in school. Maybe they are undergoing a lot of stress as they put their elderly parents in a nursing home. Maybe they are stuck in a life where they spend more than they make and constantly fight about it. Maybe one of them just lost their job.

We ALL have our challenges.

Don't get me wrong either - I don't look at my life and think I have it any harder than anyone else. But sometimes, on the really hard days, the really down days, it's easy to compare to those who seemingly have no problems.

It's easy to feel jealous at financial success of businesspeople without giving thought to the hours upon hours of work they put in to get there. It's easy to see a stay-at-home mom and judge that she probably has a high-earning husband and meets friends for coffee dates, without giving regard to the fact that maybe instead she clips coupons, rarely buys new clothes and makes sacrifices to be at home with her children. It's easy to become annoyed at a father whose child is throwing a fit, without considering that maybe he is doing it all on his own.

Appearances - both "normal" and unique - usually tell only a small part of a person's story.

Just as I don't want people to treat Brenna differently because of her skin, because of the way she looks, I know it's very important not to judge or treat people who appear "perfect." Because no one is perfect, and no one is without struggles.

Brenna Helen Marie is SEVEN months old!

Sweet Girl,

 The doctors described you as having a lot of spunk as a newborn in the NICU...and you surely haven't lost that spunk! Yesterday at your 6-month wellness checkup, the nurse asked me to describe your demeanor and read several options, like "calm, content, fussy, etc." I asked her, "is sassy on that list?" Because you are one sassy little lady!

Sassy face, anyone? :)

You know what you like and what you don't like, and you let us know it too :) You are happiest when the whole family is home together, playing and relaxing in the living room. There is a noticeable difference in your mood when everyone is around - you are just more content.

You have become quite the mommy and daddy's girl. Even the grandmas have to work hard to win your affection these days. You are always aware of who is who, and you know when someone other than mommy or daddy is holding you. And usually you are none too pleased!

You finally don't mind the car seat anymore - thankfully!! You also love playing with toys in your bumbo seat and reaching for the toys hanging in your car seat. Hands are a major obsession for you now. You love to try to grasp at our fingers or watch us open and close our hands. And if we snap our fingers...it just blows your mind :)

You take in everything and are always so aware of what is going on around you. You seem to have excellent hearing despite all of the skin in your ears. You love to be talked to, and if you feel like you're being ignored in the conversation, you get mad! You're definitely a social girl!

Happy 7 months to my baby girl!! We love you so much!

Brenna's 6-month wellness checkup

Thought that I just forgot to do Brenna's 6-month wellness checkup post? Nah, we're just that far behind on her wellness visits....too busy seeing the doctors for other problems apparently!

Six month stats:

Weight: 10 lbs., 9.8 oz. - 1st percentile

Height: 22.5 inches - 1st percentile 

Head: 15.3 inches - 1st percentile

Diaper size: 1-2 Pampers

Clothing size: 3-6 months, though she can fit in some 0-3 still. The arms in her 3-6 sleepers are really long but the legs fit well. Evan is convinced that since we wash her clothes so much, we're just shrinking them - Brenna's not actually growing :)

Likes: when you talk directly to her - and you better not look away!, sitting up when being held, sitting in her bumbo chair, chattering and squeaking, reaching out for toys (especially on her bumbo tray, though she gets bored with them if you don't give her new ones consistently!), the hanging toys on her car seat, her binkie, post-bath time, being around her family - especially mommy and daddy, for whom she has quite the fondness for :)

Dislikes: being put down, being left alone, anything more solid to eat than milk (gags like crazy!), her skin being dry

Eats: inconsistently :) Though she is doing better than a few weeks ago! We offer 120 mL (4 oz.) every three hours or so, and much of the time, she has been finishing or close to finishing lately. We only make her bottle 90 mL (3 oz.) before bed because she usually is too tired to finish. We continue to fortify her bottles with formula so that each ounce is 22 calories instead of 20. Holding off on any more solid foods until after we hopefully resolve her feeding issues.

Sleeps: Still about 3 naps a day in her bed now. She's become a much lighter sleeper, so I have to keep her in her room for naps or we'll wake her up. She goes to bed earlier now, with her last bottle at around 8 p.m. and down for the night at 8:30. The first time we tried the earlier bedtime, she slept until at least 6:15 a.m. for three nights in a row. Unfortunately that was short-lived, and lately, she'll still wake up at least once to eat, around 3:30-4:30, then back to sleep until at least 6:30.

This sassy girl is developing quite the personality! :)

First dip in the pool

Yesterday was a first for Brenna - being in the water without having to endure any scrubbing! :)

The day was insanely hot, around 100 degrees, and godmother Kristin heated up her parents' pool so that it was the perfect Brenna temperature. And so Brenna went for her first swim ever.

The Easter Bunny had brought Brenna an adorable little swimsuit that had long sleeves (since she can't really wear sunscreen) and also happened to have butterflies on it - perfect! I was excited for her to get to wear that for the first time too.

Not only did she tolerate it, she actually seemed pretty happy in the pool. For most of the time, I stood in the shade with her, periodically dipping her chest-deep into the water to make sure she was staying cool. I had her in the water for probably a half hour!

After pool time, Kristin graciously took Brenna inside to allow me and Connor to play for about another 20-30 minutes in the pool. Overall it was a much better experience than the last time we tried a swim date.

We'll definitely chalk the first swim up to a success!

Melt me into a pile of maternal mush

Hi there, pretty girl! Did you have a good nap?

When big brother asks to join Brenna in her crib, how can I say no?

"Brenna's tickling me!"

Enjoying the impromptu post-nap party 

 Are you ready for this?

My heart can barely handle it!

 Doesn't get any better than this :)

Dream Home

Following on the heels of my super Debbie Downer post, I thought I'd do something fun to switch things up. It's not all doom and gloom around these parts...not even close actually, though Evan thinks my blog is leading you to think that. I just go through emotional spurts - good and bad - and choose to share it all!

Anyway, I digress.

Sometimes Evan and I talk about how fun it would be to build our next house somewhere in the country, and I dream about how "Brenna-friendly" we could make it. ("Dream" being the key word here!)

First and most importantly on our house planning agenda is Brenna's bathroom. Both kids would get their own bathrooms of course, so that Brenna could soak to her little heart's content, and Connor could avoid having to bathe with dead skin floating around ;-)

My friend DeDe has a MicroSilk bath for her son Evan (who is 2 with HI as you might recall), and speaks very highly of how it helps to hydrate his skin and remove scale build-up. Basically it's a hydrotherapy bath, so of course we would need a big whirlpool one for Brenna Girl!

(found here)

OK, so I love Pinterest. I'm addicted. It makes me actually want to build a home someday because of all of the great ideas. Here are some ideas I have pinned for our dream home...

Also in the bathroom, we would need a towel warmer, because Brenna can't regulate her body temp and doesn't like a room temperature towel at the end of her bath, when she's already cold. Let's be honest, getting out of the bath to a warm towel would just be the bee's knees.

(found here)

And Brenna's bathroom definitely needs to have lots of storage for all her bath supplies - towels, wash cloths, bleach, bath cleaners, etc.

(found here)

And the laundry room...oh the laundry room. Right now, our laundry area is in our utility/junk room in the basement. Can't complain because it's a useful enough space, but I pine for these amazing rooms, since I spend so much time soaking and washing clothes and attempting to remove Aquaphor stains.

This big sink in the middle of the washer/dryer and all of the storage = heaven

(found here)

And for the most fun area - a pool!! Again, since Brenna's body temperature is all over the place according to her environment, I would love to have our own pool that we could keep at the perfect Brenna temp. And then we could just have all of the kids over to our house to swim, so Brenna won't be left out somewhere else if the pool is too cold!

I'm diggin' this zero entry pool - good for kids of all ages - and that view isn't so bad either :)

OK, and while we're dreaming, let's just add in a gorgeous home office space for me to blog and work on photography and craft my next best-selling novel...

(found here)

....as well as an incredible kids playroom...

(found here)

...and a living space with bright colors and lots of family photos around!

(found here)

Next step...finding a nice little piece of land to build on ;-)

Whys

From the beginning of our journey with Brenna, I have never questioned "why me?" It's always been clear to us that Brenna was specifically chosen to be a part of our family.

However, lately, I have had other whys on my mind, and the daily frustrations we've been facing lately with her are even taking a toll on me physically.

Why is this skin condition so multi-faceted, so severe? Why isn't she eating well like she used to? Why can't she just be relatively healthy for an extended period of time? I hate to wish away her babyhood, but why can't she just be 5 years old and able to tell us what's wrong?

Why does this all have to be so hard sometimes?

I feel like so many of her feedings are a total battle for me, just trying to get her to consume a decent amount - enough to keep her weight at least stabilized and to keep her hydrated. It doesn't help that not only can she not breathe well sometimes, but she's also easily distracted by what's going on around her, as any baby is at this age. (her brother, the TV, her own hands - you name it, and she finds it more interesting than her bottle!)

I'm so so sick of doctor's appointments. We've been to so many appointments over the last month or so that I can't even keep track of them all - and most of them are not scheduled beforehand and occur because of a new health issue that pops up. I'm not a fly by night person anyway, so between the health issue at hand and our whole schedule revolving around both planned and unplanned doctors' visits, this stresses me out.

And worst of all - in my opinion - is that lately, I've been spending so much of my energy and attention (and patience!) on Brenna, that I have practically none left for Connor. Thank God he is such a patient and sweet kid who listens well and usually plays quietly on his own when I need him to. But he is not getting the best of his mommy right now, and frankly that sucks. When you add in all of his normal toddler demands like potty training, meals and snacks and just general play time and story reading, I am feeling stretched thin right now.

It definitely seems like I have these down periods in the midst of all of the positive, happy times, and unfortunately this time my body is physically responding too - not sleeping well, subtle but all-day headaches, etc. - which is only exacerbating my lack of patience and frustration. I have lost my cool too often lately, and it's not fun for anyone.

I'm trying to keep my attitude positive (and honestly I hate posts like this because I feel like I'm complaining!) but my mood has been a little dark lately. Right now, I'm just trying to laugh about these things to keep from crying.

"You're Mine, Birdie!"

I've had a lot on my mind this week, and not much focus with which to express it. Hoping to find some clarity soon on my roller coaster of emotions and thoughts lately. I even tried to put together a Thursday Thoughts post and failed miserably :)

So for now, I'll just leave you with this adorable video of Brenna going after her toy bird while waiting for her ENT appointment. She's really extending her arms and opening her fingers lately, especially while reaching for toys!

CT scan on the schedule

Yesterday we went to the ENT doctor (a new one since our previous ENT left last month) to discuss some of the recent issues Brenna has had with eating. Thankfully this doc had seen Brenna in the NICU so she was familiar with her condition.

We now have a CT scan scheduled for next week to check if Brenna's adenoids are enlarged or if there are any other issues going on with her sinuses/nasal passages. The doctor said she would normally just take the adenoids right out, but she doesn't want to do anything to Brenna that isn't necessary.

She'll have to be sedated for the scan, since you have to be still for 5 minutes and that obviously wouldn't happen with a baby. That makes me a little nervous. She's also not supposed to eat for 4-6 hours beforehand. Um, really? I have no idea how we're going to pull that one off, except to have a screaming baby for hours.

Ha, that's a good one, guys. Now seriously, when do we eat?

Praying that all goes well and that we finally get some answers about what is causing her to not breathe and eat as well as she always has been. This girl needs all the help she can get to eat more!

Family weekend get-away

Every year, my mom's side of the family travels down to Robinson, Illinois, where my aunt lives on a small lake (coincidentally enough, called West Lake).

Huge shoutout to my wonderful husband, who agreed to stay home with Brenna, while Connor and I joined the rest of the family for this year's trip this past weekend. We didn't want to throw Brenna completely out of her element just as we're trying to get her to eat better.

Though I was only in Robinson for 24 hours total - I had to get back on Sunday for a baby shower - it was beyond relaxing to spend time away from home with my family and play with Connor and my cousins in the lake.

We sure missed having Evan and Brenna there, and I know Evan was ready for us to come home ;) but it was a much-needed break for me!

Health Updates

Yesterday morning, I put Brenna in her swing for a minute while I ran in the other room. Then I heard her start fussing...and then start sneezing. And it dawned on me what was happening.

I ran into the living room to see her feeding tube completely out of her nose, sitting on her belly, and her looking at me with a satisfactory expression. That little stinker completely yanked her tube out. She looks innocent, folks, but she's a sneaky one.

Who, me?

We saw her pediatrician yesterday, who said we can leave the tube out and see how she does - whoop whoop! We are seeing an ENT doc next week because her speech pathologist suspects - and we agree - that something is going on with her nose and nasal passages/breathing. Hopefully they can get that figured out soon, so she can get back to packing on the pounds!

For you medical types: she started taking Prevacid instead of Zantac, and Nasonex to hopefully open up her airways and help with any congestion/gunk in her sinuses, etc. For you non-medical types: yes, she's back on more meds :(

It's very apparent when she's eating that she can't breathe all that well through her nose, which of course affects how willing she is to eat correctly. Calories and fluids are one thing we can't afford to play with when it comes to this girl's health.

The good news in all of these trials is that she has remained one happy baby!

Wild woman

Brenna was sitting on my lap the other night doing what appears to be sit-ups. Her little expressions were just making me melt :)

Feeding tube

Though Brenna's eating picked up again after we left the hospital last time, she again became less enthusiastic about feedings throughout the week. And as we moved into the weekend, Brenna's feeding decreased to about half of what she would usually take.

The strange part was that she had NO other symptoms of anything being wrong and was completely happy - just not interested in finishing her meals. Quite unusual for a Westlake :)

On Saturday, Brenna went about 10 hours without having a wet diaper, so we made the decision to take her to the hospital again.

I was not a happy camper. Though it was seemingly her least serious hospitalization, it was the one that I was the most frustrated about - probably because she seemed fine other than her eating. The first few hours we  were there, I cried a few frustrated tears, Evan and I bickered a little, and I was not the friendliest to the poor nurses. I didn't want to be there, and I was sick of the hospital.

They placed a feeding tube in her, and then sent us home yesterday morning - with the feeding tube. We have now learned how to place it ourselves (gosh I hope I don't have to do that) and how to do the feedings with the tube. I still don't know how long she'll have to have it in - I guess until she picks up the pace with eating? We are letting her eat as much as she can/wants to from the bottle and tube feeding the rest.

Happy girl despite the stupid feeding tube!

We all suspect that she began to not eat well due to the pressure in her face and head when she developed the fluid and infection. And now being on antibiotics and having the feeding tube (which she is not a fan of!!) isn't helping either. It's a vicious cycle now.

I realize it could always be way worse, so I'm trying to look on the bright side of things. But I can't help but be really frustrated right now...