For Me Friday: Travels - Italy

There are a lot of updates about Brenna I need to share, but I'm running on coffee for the last two weeks, as Brenna has been up for hours on end each night, so I need a little escape from the usual blogging topic today.

On to my For Me Friday topic: traveling!

I can't tell you how glad I am that Evan and I don't look back at the early years of our relationship and marriage and think "why didn't we do that when we had the chance?" Because we took every opportunity we had since the day we began dating to go places and get involved and experience new things and meet new people.

Taking vacations was always a huge priority to both of our families as we grew up, so we have always loved to travel together. Just about every break in college was used for traveling, as we road-tripped to Memphis or Savannah, went skiing up in Michigan, flew out to Vegas, vacationed in Mexico with my family or drove to Florida with our friends for spring break.

Evan's grandpa said something when I was pregnant with Connor that has always stuck with me...He said that his wife used to say "We can't afford to travel." And he'd reply "We can't afford NOT to." That's exactly how Evan and I have always felt, and someday I know we will have the opportunity to travel again, as a family of four.

When our first anniversary rolled around, Evan and I spent the whole year saving up, and we splurged on a trip to Europe. We went on a 10-day tour that took us through Italy, Switzerland, France and England. It was such a great experience that we often comment how much we can't wait to retire and travel through Europe again :)

First on the stop were the Italian cities of Rome and Venice. The great thing about our tour was that there were extra excursions you could participate in, but we also had the freedom to go off on our own whenever we wanted to.

In Rome, we accompanied the group to Vatican City to see the Sistine Chapel and St. Peter's Basilica...

And we discovered that God is an Illini fan :) 

We then headed through the Roman Forum and checked out the Colosseum...

Afterwards, we ditched our group and took our own little walking tour through Rome, stopping at the Piazza Navona, Church of Santa Maria (which on the interior has to be one of the most beautiful churches I've ever seen!), the Trevi Fountain, Piazza Barberini and the Spanish Steps.

Our day in Venice - considered one of the most romantic and unique cities in the world - did not disappoint!

 Of course we took a gondola ride...

...witnessed the creation of Venetian glass...

...and hung out in St. Mark's Square.

It's so fun to look back at these photos, thanks for traveling with me :) More travel posts to come on future Fridays! In the meantime, we'll be back to our regularly scheduled programming very soon ;)

Choosing gratitude today

Today I am thankful for...

...A husband who is a partner, a best friend, a support system and who is willing to share all of these trials and challenges with me.

...A son who is so easy-going that he is not bothered by Brenna's illnesses, constant crying or attention demands.

...A daughter who, despite all of the odds against her and all of the challenges she has overcome and is currently fighting, looks at me with big trusting and loving eyes and just wants to be cuddled and kissed.

...Physicians and specialists who are in contact with us at all hours of the day, night and weekends in order to help solve or at least try to alleviate the health issues that Brenna is struggling with.

...Family members and good friends who are willing to give up their free time to assist me with the care of my children and household and who encourage me daily.

...God, who I know is right beside me with every tear I cry and every aching pull of my heart and knot in my stomach... who I know has a bigger plan than I can even begin to comprehend at this time and who I am being asked again and again to put all of my trust in...

Health updates

After five days of vomiting, starting with - you guessed it - formula (Neocate), by Sunday morning we had had enough and decided ultimately that exclusive breastmilk seems to be the best choice for Brenna right now. We're having to revert back to smaller amounts over longer periods (2 oz over an hour) because her little tummy is so irritated, but hopefully we can start increasing that soon. (We had gotten close to 90-100 over an hour before trying formula again. Guess we've really learned our lesson the hard way huh? Brenna + any formula ever made = bad bad decision.)

Brenna's skin also rapidly deteriorated from the end of the week into the weekend, leading us to contact her dermatologist on Saturday. He put her on a new antibiotic that targets both staph and strep, guessing by the photos I send him that one of those bacteria was making an unwelcome home on her skin. Thank goodness she responded quickly and she looks great now, and seems to be feeling much better too - stretching out more, opening her hands and not screaming in pain when touched, which is always a plus.

I'm often asked how we know she has a skin infection... At this point, we know her skin and know what it should look like.

This is not what it should look like.

(her knee and shin)

Usually Brenna's skin doesn't just change from good to bad like this really quickly. Typically, we'll notice first that it just feels a little different in bath - maybe the layers aren't rubbing off like usual or maybe it just feels a little more "waxy". Then we'll notice a couple of areas look a little concerning... and then finally all of a sudden her whole body looks terrible and she's miserable, and then after even just a round or two of medicine, there will be so much improvement.

It's difficult to discern at first if it's an progressing infection or if maybe we just rubbed a certain area a little harder than we should have during bath. And we try not to overreact at every little change because her skin does go through different stages of thickness or color, etc. We are very grateful to have a dermatologist who trusts our judgement and is willing to be in close contact with us during off hours (since Brenna always seems to get sick on weekends!)

In other news, Brenna underwent her ultrasound today on her stomach area and had bloodwork done...so hopefully we will know the results of some of these tests soon!

Brenna's Church Baptism

Yesterday was a blessed day in Brenna's life, as we celebrated her beautiful life and faith through her formal baptism at our church, Christ the King.

Though she was already baptized in the hospital when she was five days old, we really wanted to hold a church ceremony for her and have her godparents, my cousin Steve and my best friend Kristin, present for her baptism.

Deacon Al Laabs, who also baptized Connor, did an absolutely wonderful job presiding over the ceremony and made it very personal for us. He remarked during the ceremony that while all children are such special gifts from God, there are certain ones sent down to us that help us become better witnesses to God and live in God's faith, like Brenna has. I didn't expect to get emotional, but those words meant so much to me, and I was left wiping away tears!

Brenna wore the beautiful little gown and bonnet that I wore 28 years ago :) She looked like such a little angel!

The start of the ceremony...

Extremely unimpressed with the water being poured on her head :)

Godfather Steve lighting the candle

With Deacon Laabs, Godfather Steve and Godmother Kristin

Godparents

My family

Evan's family

Though these past weeks have been so challenging, this beautiful ceremony really left a peace in me that things will get better soon. I was so glad to have that time out while we all celebrated God's presence and blessings in our lives and in Brenna's life.

First GI appointment

Even if Brenna hasn't literally been screaming for 5 straight days, it sure feels like she has.

The poor girl is miserable (and therefore her parents are miserable.) And no one can pinpoint any specific reasons at this point.

Yesterday, I was so glad to finally have Brenna's GI appointment, and it went really well. I felt like her doctor and dietitian really took the time to listen to me, and they were humble enough to admit that we would just try some trial and error with the feeding tube and even if they don't have all the answers at first, we will figure out a good solution eventually.

Her dietitian even asked me, "What is your gut feeling, as her mother?" That was refreshing and made me feel like my opinion and observations were worthwhile.

A major "outcome" of the appointment is that Brenna will be having an ultrasound done on her belly on Tuesday morning. Her GI doc said that by feeling around her stomach, Brenna's liver feels enlarged and low in her body. I'm not sure what that might indicate, so we will see what the ultrasound shows and go from there.

She will also be having a urine analysis and bloodwork done, to see if those numbers turn up anything that might correlate with her liver or GI system.

Additionally, we are trying Neocate formula, which is a very basic hypo-allergenic formula, to see if that makes a difference with anything.

In the meantime, we are just trying to keep Brenna as comfortable as possible. She is still very puffy, which makes the doctors suspect a protein deficiency, but thankfully her puffiness has decreased a little today. Hopefully we can get some fluids to drain now, and with being back on fuller feeds, hopefully her protein levels will return to normal.

I think being so puffy is making her skin even tighter and therefore causing her to be in a lot of pain, judging by her high-pitched screams whenever we touch her or pick her up. It's breaking my heart to see her so uncomfortable and inconsolable.

I'm really looking forward to getting all of these tests done to rule out any problems or find solutions to any that exist.

Wednesday Words

I guess this is a variation from Thursday Thoughts! Lots of little things on my mind today...

1. I've been meaning to do this for a long time, but I finally created a Facebook page! If you want to follow along with Brenna's story on Facebook, just "like" our page. I've had an overwhelming number of friend requests from so many strangers who, I'm guessing, want to connect even more with our family, so in an attempt to keep my own facebook profile a little more personal, I figured a Blessed by Brenna Facebook page would be a good idea. I'll be posting even more updates and cute photos of our special girl :)

The way she holds onto her binkie reminds us of a little mouse eating a cookie

2. Brenna Girl is over 11 pounds now! I think a big reason is that she is still apparently retaining fluid after her surgery for some reason that we're trying to figure out (because her poor legs and feet are hugely puffy). But I am encouraged that she is finally not losing weight.

3. Yesterday, we were all feeling totally cooped up, so I basically invited ourselves over to our friends' house down the street. When we got there, one of their little girls who just turned four asked if Brenna was doing better. She said "I wish she would feel better. I wish she didn't have to put butter on her face anymore!" It was one of the most adorable things I've ever heard anyone say about Brenna :)

4. Our new feeding pump has a new name. Meet George. We decided that this new friend of ours is going to be around for a while, so we might as well give him a name and learn to live with him!

George is filling 'er up!

5. Along those lines, we learned a long time ago that sometimes you just have to laugh, no matter how difficult things are. Evan has an affinity for making up songs for all different situations we encounter on a daily basis. My personal favorite lately is his rendition of "My Girl"...except he sang it to Brenna right before her bath and changed the words to "Dry Girl"...

6. I got out this weekend. In public. With friends. And no kids or husband. It was a little surreal :) And my friends made me promise to blog about it! I attended the Miranda Lambert concert at the Illinois State Fair with my friend Hallie who drove down from Chicago. She asked me months ago to go with her, and I am so glad I agreed. It was an amazing break from the daily stresses, and it was great hanging out with some of our other friends before and after the concert!

Hallie and me at the concert

Today Brenna participated in a swallow study with our speech pathologist, and tomorrow is our appointment with the GI doc and dietitian, so we're hoping that by conferring with all of the specialists of our feeding team, we can get some answers and move forward with her eating!

Feeding regrets

There aren't many things I really, truly regret.

But if I could rewind to two months ago, I would have made some much different choices regarding the direction that Brenna's eating habits were heading. And I'm really struggling with this right now.

The hardest thing for me to accept is that I don't feel these issues simply manifested. I believe they were created by some of the decisions that we and her medical staff made for her.

When Brenna was two months old, she was eating between 120-150 mL (4-5 oz.) of milk consistently.

Now - after various attempts to fortify her milk to higher calories, trying new formulas, tubes down her nose and finally a g-tube - she is eating 15 mL by mouth and we are tube-feeding about 45-50 more in about 45 minutes' time because any more than that or any faster than that, and she throws it all up.

I love our specialists; I really do. And I don't blame anyone for anything. But the irony is not lost on me that Brenna was eating FAR better months ago before everyone started trying to help her eat better.


At 2-3 months, she was growing, thriving, changing, albeit slowly. So everyone wanted her to eat more, to grow more.

And now at 8 months, she's eating practically nothing on her own, and she's still at a growth plateau. She's not yet gotten to try table food aside from a couple of brief tastes of rice cereal, and I'm afraid we've caused a lot of long-term damage....I think it will take a long time now to get these skills back.


The only solace I have now is that we are able to feed her through the entire night - slowly but surely.  But our days are currently revolving completely around feedings. We are having to feed her as much and often as we can without making her sick...so a lot of small, long feedings. Which means she is hooked up to her pump about 3/4 of the day at this point.



I feel so stupid. I actually thought when the g-tube was placed that Brenna would eat around what she had previously been consuming by mouth (around 2 ounces) and then we'd feed her the rest through the tube, and we'd all go on our merry way.

This? Being hooked up to a machine the majority of the day? This is not the relief I was expecting and anticipating, the relief that practically everyone assured us we would get from having a g-tube.


I am trying to let these regrets go. I can't change anything. And now I can only look forward and deal with what is going on now.


Today was the first day in three weeks that I haven't had knots in my stomach most of the day. I'm getting the hang of the pump, I'm trying to get our new feeding system/schedule under control, and I'm really trying not to hold on to my guilt and regret about letting her eating issues spiral so far down.

Brenna Helen Marie is EIGHT months old!

My precious girl,

Today you are eight months old. I received reminders from several people today before this finally sunk in.

Your 7th month was not the best or happiest for you. Since the week and a half from your surgery, you have basically regressed back to the rigid, anxious baby that you were when you came home from the NICU. Thank goodness your skin has improved noticeably after your latest infections, but your overall demeanor has not.

I haven't seen you smile in a couple of weeks, and this hurts my heart. You are constantly wailing and fussing, and even when you are quiet, your eyebrows remain furrowed as if you're just waiting to get upset again.

I've always said that the newborn stage is not my favorite, and it's becoming increasingly difficult having an 8-month-old baby with the body of a newborn. And you definitely get frustrated, wanting to explore your world and not having the means to do so. I have to continually remind myself that despite your tiny stature, you are growing older and more alert, and that means you need more mental stimulation and learning.

I've started to put on Baby Einstein DVDs for you every now and then, and you really are quite taken with the bright pictures and music. It comes in handy when I have to hook you up to the feeding pump for a while. So far Baby Mozart, Baby Newton and Baby Van Gogh have gone over well with you. I'm also starting to try to read more one-on-one with you.

I'm sorry things have been so difficult for you lately with all of your feeding issues. I am so praying that your 8th month will be way more successful and happier than your 7th month, and that no other health problems arise. 

Tonight we read "Guess How Much I Love You," and in the words of Big NutBrown Hare... "I love you to the moon - and back!"

Happy 8 months, Boo Boo.

For Me Friday: Toddler Activities

When Brenna first came home from the hospital, we were in a "survival" period, where we were just trying to keep our heads above water as we learned how to care for her at home. (Unfortunately there are still a lot of "survival" periods in our house with her constant health problems.)

I knew it was important to keep Connor engaged when I couldn't always be there playing alongside him or reading him a book, and I always feel total guilt at plopping him in front of the TV (although some days are much more full of TV shows and the occasional Disney movie than others, and that's OK!)

But I continually strive to find fun activities or projects for Connor to keep him busy and having fun when I have to tend to Brenna or other things around the house. For this week's For Me Friday post, I thought I'd share some of his favorite simple activities (and I just used things around the house to put them together!)

1. Duct tape road. I got the idea from this blog that I follow, and though she said her duct tape didn't leave a residue on the floor, I was skeptical...so I put in on our living room rug that we're planning to replace soon anyway. (And just for the record, it actually didn't leave a residue or mess up the rug!)

I made quite the adventurous track and used a black marker for the road marks, and Connor had a blast for several days driving with his hot wheels cars...

2. Bean scooping and pouring. Probably the simplest project ever, and one that Connor just loves. I just take some different kinds of beans and rice, put them into various containers, give him some scoops/spoons and let him have at it! By the time he's done, they're usually all over the floor, but it's a quick clean-up in exchange for a good half hour of whatever I need to get done.

3. Edible peanut butter play-doh. I got this idea and recipe from one of my favorite blogs, moneysavingmom.com. Connor absolutely LOVES play-doh and this turned out to be a less messy, more edible version of a great activity.  

I used the recipe that called for 1 cup flour, 1 cup peanut butter and 1 tablespoon honey - super easy! I also gave him chocolate chips that he used to make "little footprints" in the peanut butter or hide and then dig out.

4. Toothpick and marshmallow creations. A huge hit!

I just handed over a bowl of marshmallows and a handful of toothpicks, and let Connor build to his heart's content. The best part was that it kept him busy by himself for quite a while, but I was also able to join in and create shapes for him to identify. He even got the octagon! Thank you Micky Mouse Clubhouse :)

I know I have a lot of fellow mothers who are blog followers, so I figured this might give you all some ideas to do with your kids. If you have any more activities to suggest for me, we'd love to try some new activities or projects!

Health updates

After talking with Brenna's dermatologist on Monday, we decided to take her in just to get checked out. We feel a little ridiculous running to him every time we think her skin looks "different"...but by now, we know her skin well enough to know what it should and shouldn't look like. And Dr. Conlon reassured us by pointing out that we've never come in unnecessarily.

Upon seeing Brenna, Dr. Conlon agreed that her skin did look very concerning and said at first glance, he would guess she had staph again. The problem was that she'd been on antibiotics for staph for a week. And after he said that, with us having just come home from the hospital, the thought of MRSA completely occupied our worried minds that night.

The cultures came back today positive for two infections - E. coli and klebsiella pneumoniae. These two types aren't typically present on the skin (like staph is, for example) so it's almost certain that she picked them up at the hospital.

Fortunately, the medicine that Dr. Conlon switched her to on Monday is the antibiotic that targets both of these, so Brenna is covered and on the road to recovery! She began to look and feel better yesterday, after several long, miserable days.

For the majority of this week, she has been in a lot of pain. I haven't even been able to hold her very much because she cries out and arches her back as if in pain and trying to evade my hands every time I pick her up. I've been trying to keep her comfortable in her swing or bouncy seat where she doesn't have to endure constant touching on her obviously hurting skin.

I am so thankful yesterday that Brenna finally seemed to be in less pain. She wanted to be held and cuddled more, and her cry was back to more of her sassy self versus her cry of discomfort.

Yesterday, we also paid a visit to the pediatric surgery clinic at St. John's so they could take a gander at her surgical site. The stitch holding her g-tube in place had actually pulled completely out and is now just attached to the tube itself instead of her skin, and the hole had grown a bit. We are now using a cut-up baby bottle nipple to hold the tube in place, and it's quite awkward! We are hoping to switch from the actual tube to a much smaller "g-button" as soon as possible.

Speaking of the g-tube, we have pretty well mastered its use, but Brenna has still been experiencing some vomiting. We got a pump today, so that we can hook her tube up to it and it will feed her over a longer period of time. 

We are also starting with a new feeding team that includes a GI doc, and I am so anxious to get this show on the road and figure out what is wrong with Brenna's system that is making her throw up and not want to eat! 

Today was so frustrating for me, and I teetered between wanting to burst into tears or throw things in anger. Brenna was vomiting after every feeding, and then when the new pump was delivered and we were ordered to spread her feedings out over an entire hour, I was less than thrilled at the idea of her being hooked to the machine for a third of the day. I was questioning our decision to even get a g-tube, and I was so angry that what was supposed to be a huge relief to our family was just turning out more problems. And I was frustrated that the process to uncover the underlying problem of her not wanting to eat seems to be moving so slowly.

But getting the cultures back provided a little closure in my mind, knowing that we had figured out the infection and were treating it properly. And I started trying to be optimistic about the g-tube pump, considering that we can feed her continuously through the night at a very low rate of speed to get her more calories and fluids (now I'm just praying that she doesn't throw it up - I might be a nervous wreck the first couple of nights.)

We have an appointment with our GI doctor next week, and in the meantime, I hope for my sanity's sake that things will be looking a little up very soon...

"As long as it's healthy"

So many days, I marvel at Connor's nearly perfect health.

I run my fingers through his dark blond hair as I sing to him at bedtime. I take notice of the smoothness and flexibility of his skin as I play "this little piggy." I laugh at the witty and observant words that make their way out of his mouth.

When I was pregnant with Brenna, Connor and I used to pray aloud every night for the "baby in mommy's belly to grow big and strong." And of course, by that, I meant healthy.

I read an article once written by the mother of a special needs child who resented the use of the phrase "as long as it's healthy" as widely spoken by pregnant women everywhere.

I can completely understand this phrase. I am sure I used it many times myself. But most times, the words are uttered with little comprehension of the full meaning of what it means to have a healthy child. And I also understand the author's point - to say "as long as" implies that it won't be OK if your baby is not healthy.

And that's not true.

Sometimes the baby is not healthy. And life, however hard that it may be, goes on. And you will always do your best as a parent whether you have a healthy child, one who has special health needs, or an angel in heaven.

Health is never guaranteed. A heart defect discovered in utero, a skin condition at birth, autism diagnosed at age 2, cancer at 12...anything can happen.

Our child - surviving and overcoming daily obstacles due to her severe skin condition - is surely a miracle. But our other child - in complete health at this stage in his life - is such a miracle too.

When you think of all that can go wrong with a baby - between the millions of cells, genes, chromosomes and so many parts of the body - sometimes I'm amazed that so many children are born healthy.

To have a healthy child is the greatest blessing I can imagine for a parent...and one that I hope is never taken for granted.

Helplessness

Helpless.

That's how I'm feeling right now.

Truthfully, I don't feel much like writing, but so many people are asking for updates that I figure this is just easiest.

Brenna has been miserable and in pain since Friday morning. Fortunately she's been sleeping decently, but during awake hours, she's been crying or fussing constantly with little relief. We've been alternating Tylenol and Ibuprofen practically around the clock, which affords us a few sporadic hours of comfort each day.

The vomiting is not worse, but is still continuing, despite extremely slow feedings. She keeps the majority of feedings down, but still throws up maybe a third of them. Last night, she threw up so violently that it irritated the wound from her g-tube surgery and she bled a little.

She will only eat about 20-30 from the bottle, and we are tube-feeding the rest. She will pull away and cry out after that small amount.

Some spots on her face, head and chest have opened up bleeding in the past couple of days. We will be seeing her dermatologist today to hopefully get reassurance that there isn't another infection present.

Brenna is very anxious after her week in the hospital. She cries at any movements, changes in positioning, touching...much like when she came home from the NICU. It pains me to see her like that, and I pray that she won't have to experience any health problems for a long time and those negative memories will fade for her.

I've been talking with several of her doctors today about all of these issues, but otherwise I just don't know what else to do besides love on her and make her as comfortable as I can. I hate not knowing what is wrong and feeling so helpless while my baby is obviously in pain and discomfort.

One million views

Check this out...

One MILLION pageviews in the 7 months of this blog's existence!! You guys are awesome...thanks for reading :)

Home again

Know what this means?

Yes, Brenna Girl is Home Sweet Home!

Fortunately, I think the deciding factor for all of her symptoms last night ended up being her dangerously low blood sugar (for those of you in the medical field, it was 21...though that number doesn't mean anything to me, we're told that it's supposed to be in the 50s.) Once the staff began pumping her full of sugar, she perked up right away and even drank about 3 oz. of pedialyte on her own.

This morning, we began using Brenna's new feeding tube! We're sticking with 2-oz. feedings for today, and then increasing to 3 ounces tomorrow before we continue our upward trend.

Currently she is very puffy, especially her legs and feet, due to the crazy amount of fluids she received post-surgery, and she does seem a bit uncomfortable if the Tylenol wears off...so right now we're just trying to keep her as comfortable as possible while she heals from this whole ordeal.

Hopefully the weekend will be non-eventful as we get adjusted to using her new g-tube!

Post-surgery complications

Around 4 p.m. today, our nurse came to check on Brenna, who still hadn't woken up from surgery, except for a couple of bouts of consciousness within an hour after her procedure. It was about this time too that Brenna's breathing rate began to pick up.

Her nurse tried to move Brenna around and picked her up to try to rouse her, to no avail. Eventually the hospitalist came to check on her as well.

Then, Brenna began to experience a little tremor in her upper body - almost like a mini-seizure that was off and on. At this point, the doctor stayed really close, monitoring her breathing, her vitals and the tremors. When nothing would wake Brenna, the anesthesiologists were called in.

As each of these issues progressed, we could see the medical staff get a little more concerned. We have had a little experience analyzing the reactions of doctors and nurses, and we're always trying to read them when it comes to how worried they are.

Two hours later, at 6 p.m., Brenna still hadn't woken up, which meant she'd been under anesthesia for  about 9 hours. The anesthesiologists were checking her records, and she had had nothing different than she did with her eye surgery at 3 weeks old, except for two drugs that typically are "in and out" of the system, they told us. Her breathing rate - usually in the 20-30 breaths per minute range - was in the 60-80 range. She hadn't had any urine output since the surgery, and she was still have tremors.

The situation, which seemed to be building and building, felt like it got really serious really fast.

Within 15 minutes or so, we had 3 anesthesiologists, a general surgeon resident and a hospitalist examining and conferring about our daughter.

When the head of ICU arrived in our room and they assembled a team with a triage cart outside the room, we were pretty frightened and wondering how serious this really was. I don't think until Brenna was stabilized that we really felt the weight of it all.

Eventually the pediatric anesthesiologist discovered that Brenna's glucose levels were extremely low, so they began to pump her full of sugars. Almost immediately, she began to wake up. It probably helped her alertness that they were also sticking her heel so they could run a bunch of blood tests...

Our sweet girl is now stable (although she still isn't having an "output", so hopefully that changes really fast)...We're fervently hoping that the change in glucose level was the determining factor in this whole situation and that it will be smooth sailing now.

I'm still in a fog, and I can actually feel the tightness in my muscle from being so tense for so long this evening. What is this girl doing to me!? :)

Thanking God for keeping her safe tonight and praying hard for no more complications...

Hole in the Tummy

Evan and I had both decided to try to sleep at home last night (the last three nights, one of us has stayed at the hospital), and thankfully Brenna slept all night for the nurses. We arrived a little after 6:00, and Brenna woke up about 6:45. She was a little cranky and hungry, but we were able to distract her for the hour that she was awake before the transport team came to take us to surgery.

One last shot of her intact belly...

Somehow surgery was running a little behind, but everything else went smoothly. They ended up placing an IV in her head rather than hands or feet, which I guess is just as good of a spot as any, and maybe more so, since she's used to things on her head and it will leave her limbs free.

We spent about 45 minutes with her in recovery, and though she woke up a couple of times, she is extremely groggy and passed back out very quickly.

Post-surgery

Daddy checking up on his girl

For now, she is getting IV fluids, and she'll get to try eating orally soon after she wakes up. We won't get to use the g-tube for another 24 hours, but hopefully we'll all adjust quickly to this new addition to Brenna's belly and she will be increasing her feeds on schedule so that we can go home in the next day or so!

Preparing for g-tube

If you were wondering if the hard, plastic couch in the hospital rooms is even remotely comfortable to sleep on, the answer is no.

Although I think I could have tolerated the poor sleeping surface had it not been for the doors shutting, carts being wheeled, nurses laughing and other hospital noises occurring directly outside Brenna's room all night, which allowed me to get probably about an hour or two of good sleep. Thankfully, my husband is amazing and told me to go home and nap this morning.

Anyway, I digress.

Finally this afternoon we received word that Brenna's g-tube surgery is officially scheduled for 7:30 a.m. tomorrow. We are grateful to be the first surgery - both because she will not get to eat for 8 hours beforehand, and because that means the surgeon likely won't be running behind.

The GI nurse came in today and taught us all about the tube, how it works, how to use it, how to clean it and answered our questions about both the tube and the surgery.

All systems are a go.

By this time tomorrow, Brenna should be eating again and working her way up to "full feeds". And soon she will be packing on the pounds and growing stronger every day!

She got a little spa time today before her surgery tomorrow :)

After bath time, she was the most content she's been since arriving at the hospital - smiling, cooing and relaxed

Then I walked with her around the pediatrics floor for a while because she seemed to be feeling a little cooped up, and she spent some time in the bumbo seat...

 Sleepy girl!

Hoping she sleeps well tonight and that everything goes smoothly tomorrow. We're off to bed so we can head back to the hospital bright and early!

Finally a plan of action

The downside to your child being admitted to the hospital on a weekend for an issue that requires the consultation of a variety of specialists is that there are no specialists around to consult.

We literally spent almost two whole days doing absolutely nothing about the problems Brenna has been experiencing - aside from the general monitoring of her vitals - so by last night, I think the hospital staff was well aware that we were expecting some things to start happening first thing today :)

The main issue at hand is that Brenna's eating has been on the decline for the last couple of months, causing a slow weight loss or plateau, with more rapid weight loss in the last week or so. After we placed the feeding tube through her nose on Thursday, she was experiencing constant gagging and vomiting with a lot of mucus.

Finally today, I had had enough of the tube. My general feeling for the last couple of days is that while the tube is giving us access to her stomach, it seemingly is also causing her to throw up. So even though she's not eating enough on her own, she's also not getting enough via the tube because she throws it up.  After she had thrown up literally her entire 3-oz. feeding, we kind of just told the staff we were pulling the tube, and that if that didn't alleviate the gagging and vomiting, we could always replace it. And they let us :)

We also are moving ahead with the g-tube, which is going to be done here in town. Even though this procedure will require sutures, the sutures will be down in her other layers of skin, which are functioning properly; it's really only Brenna's epidermis (the top layer) that is affected by her condition.

I understand that the g-tube is important now in order to get her weight back up and increase her nutritional needs, but I don't want to lose sight of the fact that she was eating well, and now she's not, and we really need to figure out why. And I have expressed this concern to most of her docs, so they know where I stand. Something is definitely wrong.

There has been some disagreement between some of her specialists regarding why she's not eating, with her feeding team suggesting that possibly Brenna has developed an intolerance to the formula we use to fortify (Alimentum, which is a very "sensitive" brand). While some of her other docs have their doubts about this, I think with her history of formula intolerance, we should at least entertain the possibility of this.

So we are going to try a trial of Elecare, which is a type that lacks any form of allergens, and if Brenna does well with this, we might just have our answer. If not, then we have at least ruled out that possibility.

I'm just glad we have a plan in place after playing the waiting game for the last two days. Brenna's surgery for the g-tube will be done this week, so I would really appreciate prayers that all goes well. Thank you all for your support while we hopefully overcome yet another hurdle :)

No obvious answers

On Thursday, Brenna got a feeding tube placed again down her nose thanks to her extreme lack of eating. We're talking one feeding, for example, where she consumed one whole ounce. (Special thanks to Aunt Jennifer who came over to put the ng tube in....because I was not about to attempt that on my own!)

However, the tube has not been so helpful this time, and Brenna is gagging constantly and not keeping much down, no matter how much or how little we're giving her or how slowly or quickly.

Then last night, she developed a fever of 100.1, and it's still running in the 99s today. We also noticed during her bath that her skin was looking very cracked and a little raw on her sides, similar to when she had staph previously.

Between her skin, fever, and the vomiting that has an incredible amount of mucus in it, Brenna is now an occupant on the pediatric floor of St. John's once again. But unlike our last couple of visits, this one is troubling because there doesn't seem to be an obvious answer about what's wrong.

There are a lot of issues going on, and it's going to take more than just a day or two to figure out the reasons.

If you're in the praying mood, we would sure appreciate prayers for guidance for our doctors and prayers that Brenna's body will begin to heal and that her stomach and system will feel better very soon.

For Me Friday: Freezer cooking - dinners

Second week of my For Me Friday installments! Check out my first post here. I was so excited to get so many great book suggestions from you all ... my to-read list is stocked!

Moving on to For Me Friday, part dos - freezer cooking. Freezer cooking has become one of my latest interests, and finding some great posts on Pinterest (seriously, what did we ever do before Pinterest?) has completely changed the way I view freezer cooking.

I used to be completely intimidated about putting together a bunch of meals all at one time. But one blogger I found pointed out that freezer cooking isn't just about putting together a complete meal to whip out (although that can definitely be part of it.) It's also about completing some of the inconvenient steps of recipes beforehand when it is actually convenient for you.

For example, I was making something recently that called for 1/3 of an onion. So I chopped the whole thing and froze the leftovers in 1/2 cup increments to pull out later when I'm making something like meatloaf or enchiladas, and then I don't have to waste that time chopping! Or browning and freezing ground beef with taco seasoning or spaghetti sauce to save you the time and effort (and dirty dishes that come with the territory) when you want to have a Mexican dish or spaghetti one night. Brilliant!

One day a few weeks ago, my good friend Geri came over from Champaign for the day to help me around the house and catch up, and so I made good use of having extra hands around and we whipped up some things for the freezer. It was great too, because she helped me conquer my fear of yeast :)

We made ham and cheese pinwheels that I've been able to pull out and heat up for lunch a few times, two batches of meatballs that I can just throw in the crockpot for spaghetti or meatballs subs, and two batches of meatloaf. I actually felt a huge amount of relief after she left, knowing that I had some easy foods ready for meals in the freezer.

There are so many things that freeze well, including crockpot meals. Some of my favorite freezer cooking posts come from One a Month Mom, Ring Around the Rosies , Jamie Cooks It Up and my favorite, A Turtle's Life for Me.

My advice is to stay organized by marking your containers or bags with what's inside, the date prepared and instructions. Then I also have a running list on my fridge with what's in the freezer that I can cross off when I use it.

I don't have time to be making meals from start to finish every day anymore (isn't that an understatement!), and that's OK, but I need to improvise...and freezing meals or parts of meals ahead of time is so convenient!

Thursday Thoughts, Vol. 7

1. THANK YOU for all of your incredible insight and support about our impending decision about placing a g-tube in Brenna's stomach. It has given me such a peace of mind to hear so many good experiences. I am really looking forward to the relief it will provide to our family once we learn how to use it properly. Right now all of our specialists are conferring and figuring out what kind of procedure Brenna's skin will tolerate best to place the g-tube. We will know much more in the next day or two. We may have to travel to Peoria or St. Louis to have it placed, so I'm praying that this will be as easy on our family and on Brenna as possible.

2. Yesterday we popped into Lutheran High School's day camp so that they could present us with funds that they raised for our family last week during their Penny Drive. Seeing all the kids waving to Brenna and cheering for us just about melted me. I did an impromptu Q&A session for them since I figured they would probably be curious about her...which then made me realize that I need to work on fine-tuning my explanations so that kids can easily understand! I was definitely rambling when someone asked what, exactly, is wrong with her skin. But they definitely seemed to enjoy meeting her and learning about her!

3. Along that topic, I was so impressed with the wonderful questions the children were asking about Brenna. They were thoughtful, curious and non-judgmental. They wondered if she could grow hair, if she could go swimming or go in a hot tub, if there was a cure (and their faces all fell when I said no, it just about broke my heart!), if she was "different" mentally too, if her skin hurts, and if it's contagious. I was so glad to be able to educate them about Harlequin Ichthyosis and let them know that it's OK to ask questions about it!

4. I now have more than 4,000 words written for my Blessed by Brenna book. I'm super proud of making it even this far, and I hope I can keep up the momentum!

6. Can I just say that I love watching the Olympics? I feel like a total sap too, because right alongside all of my pride for America and my intrigue about the athletes and sports/games, I get all emotional just thinking about the parents of the athletes and how proud they must be of their children!

6. Warning: TMI topic.

 It's safe to say that Connor is completely potty trained (aside from diapers at night still)...except for one major part of potty training...the dreaded #2. Why is that so scary for kids? If anyone has advice on how to overcome this little challenge, I'm all ears :) We're trying to just play it cool and not make it a big deal, but he is so not interested. He will, however, tell us every time he has to pee, which I am a huge fan of.

7. Brenna's latest trick is extreme stranger anxiety. Either Evan or I have to be holding her, or at least in plain sight, or she will scream her head off. No aunts, no grandmas, nobody but mommy and daddy. I am not impressed. This will be a work in progress...

I'm so glad it's Thursday...this week has been a little trying, and Brenna isn't sleeping well and still eating mediocre at best. Hoping that things get a little easier soon...