This Girl.

This little beauty just turned 4!

All year she's been telling people "tomorrow is my birthday!"
She was beyond excited when her birthday finally arrived.

Here are a few tidbits about Lilly...

She LOVES to play with her friends.

She is still taking gymnastics and loves it!

She started preschool and learned how to do the hula!

(I had no idea she could move her hips like that...ha!)

She's learning how to ride a bike.

She is such great friends with Bryson

...and is always so sweet to Carly.

  • She's a very artistic little girl and loves to color, sing & dance.
  • She likes to ask people what their favorite color is and then tells them, "mine is pink & blue."
  • She is very clumsy and is always falling off chairs and falling down when she walks.
  • She calls Home Depot "The Man Store."
  • She has THE best laugh (I seriously cannot get enough of it).
  • When she plays house with anyone she always says, "you be the mom and I'll be the big sister."

She is at the cutest stage right now and we just love her to pieces!
Happy birthday Lilly!

Favorite quote this week:

"It's what you do in the dark that puts you in the light."

Life rules!


The Infection

I guess Carly missed the nurses & doctor's at Primary's so much that she decided she wanted to spend a week visiting them! She went her entire first year without getting a single infection and then has gotten hit with three in the past 10 months! No fun.

Last Tuesday Carly wasn't acting quite herself and started running a low grade fever throughout the morning that I was watching closely. Later that afternoon, as Carly was waking up from a nap, her nurse came to draw routine labs and take her vitals. When he took her temperature, it had climbed to 103°, which when you have a central line means an immediate trip to the ER. So I drove her up to the ER at Primary's, they drew cultures which ended up being positive for a very pesky intestinal bug called enterococcus, and she had to be admitted.

Carly is especially susceptible to infections because along with missing most of her small intestine, she is also missing her ileocecal valve, which is the valve that prevents bacteria from the large intestine from entering the small intestine. So because she doesn't have that valve, bacteria can easily travel up into her small intestine (called bacterial overgrowth) where it can then be absorbed into blood stream. With healthly people if a bug like that gets into your blood stream, your body can usually fight it off pretty easily, but because she has a compromised immune system due to her illness, bugs like that just hang around and this one found it's way into her line (the foreign object in her body) and ended up making her really sick.

Since it's the 3rd time she's had that same bug in her line, they ended up having to pull out her line, which is a big bummer because there are only so many places that lines can be placed. When you've used up all of your available access sites, then it becomes problematic because you no longer have a way to receive your life saving TPN. If you still need TPN to survive and you can't get it due to lost access points, then you can become eligible to be placed on the intestinal transplant list. If transplantation can't happen quickly enough, then hospice measures are put in place. Our doctor's have always done everything they could do to save Carly's lines, but since the same line kept getting infection after infection with the same bug, the safest thing to do at this point was to pull it. Without a line in, they couldn't run her TPN while she was inpatient and so she ended up losing 1 1/2 pounds during her stay. Carly is currently on her 3rd line.

While doing an echocardiogram to search for an available access site for her new line, they found a blood clot in the internal jugular vein in her neck. According to her infectious disease doctor, bacteria like enterococcus LOVE blood clots and like to settle in and make their home there, and that's exactly what this one did, which means that we have to do prolonged antiobiotic therapy at home (4 weeks this time instead of 2 weeks) in order to clear the bacteria out of the clot. I was concerned about there being a clot in her neck, but the doctor's said the risk of the clot dislodging and causing issues is extremely minimal and that the body will naturally break the clot up with time.

As soon as they started the antibiotic (ampicillin) in the hospital, Carly's stool output increased like crazy (this always happens when she's on antiobiotics). She was losing so much fluid in her stool that she became extremely dehydrated and lethargic so they had to keep pumping her full of specialized IV fluids to try to counteract her high fluid loss. They finally got everything back in balance, but in the meantime it was heartbreaking to see her so lethargic and feeling so lousy.

Her surgery to have her new line placed went well except that they had a really hard time waking her up after because her blood sugar dropped so low during surgery. Normal is 80-100 and hers dropped to 44. Her heart rate dropped down to 54 (normal is 80-130). They got her hooked back up to an IV and after 1 1/2 hours she eventually came to, but in the meantime it very nerve-racking.

She's home now and doing well. We are still battling constant dehydration due to her high stool output (around 10 very liquidy blowouts a day), so her nurse has been coming to draw her labs every few days so her GI team can keep adjusting her TPN to keep all of her levels in check. Carly pounds down tons of Pedialyte when she's off her TPN to help keep her hydrated.

Now that she's home, we have to run the antiobiotic through her line every 6 hours. Each dose takes 30 minutes to complete. The antiobiotic comes in these little pods that we hook up to the line on her chest and then we have it hang out the back of her so she doesn't play with it. We have to run this 4 times a day for 4 weeks.

She was so adorable when she got home and you could tell by the smile on her face and her cute giggles that she was beyond delighted to be home.

Carly looks like a deer in headlights in this photo, but I still love it because it shows how much Lilly loves Carly and how happy she is to have her home. Bryson and Lilly both love her to pieces and are so sweet with her!

Frequent hospital stays have become a part of our new normal. They aren't fun, but we've accepted them as part of our new life and have grown pretty accustom to them. We are so grateful for all of our family and friends who always so willingly step up to help us during those times.

Favorite quote this week:

"Some things may never get better, but your ability to deal with that problem will improve."

-Wayne Kirk

So true. Life rules.


...and We're Back.

Yes, we are still alive. Life has just been a crazy, crazy roller coaster around here lately. I'll post an update about everything the family has been up to soon, but in the meantime, I wanted to give a quick update on Carly's progress.

It's been over 8 months since my last update about her, so there is a lot to catch up on. First of all, Carly is now 20 months old and weighs just a smidge under 20 pounds. At our recent clinic visit, her GI team was thrilled with her weight gain and dropped her TPN (IV nutrition) from 7 days a week to 5 days a week with 2 days of hydration via her g-tube. This means that we run her TPN through her Broviac (the IV line that goes into her chest) for 12 hours, 5 nights a week, each of which delivers a days worth of calories & nutrition to her body through her bloodstream. On the two night's she's off her TPN, we run a hydration fluid (aka: Pedialyte) into her tummy via her g-tube to keep her hydrated while she's off her TPN.

In addition to Carly's TPN and specialized baby formula, Carly eats a high protein, high calorie, no sugar diet. This type of diet helps her remaining intestine absorb as much as possible and helps reduce the risk of intestinal bacterial overgrowth, which she's at a very high risk of getting. So she eats a lot of eggs, lean meats, fats (for added calories), complex carbohydrates, cooked veggies, and doesn't eat anything with sugar in it, including fruit. Trial and error is teaching us what her body can and cannot digest and tolerate. If a food comes out looking exactly like it went in (this happens a lot), then we know her body can't digest it and that it's not a good food to feed her and/or if it causes her diarrhea to worsen, then again, it's a food we need to avoid giving her.

Based on Carly's food intake, output, and weight gain, her GI team estimates her intestines are working at about a 50% efficiency, meaning they absorb 50% of what she eats & drinks. So in order for her to gain weight like a normal person, she would have to eat twice as much food as a normal person would. Feeding her twice as much food in order to get her off the TPN sounds like a simple solution, but if she eats that much food, it causes her to dump (aka: poop a TON...like it all just comes right out) because she is missing so much of her intestine, so it's counter productive to do that. So instead, we allow her to eat as much as her body will tolerate by mouth (right now that consists of about 70% of her total calories), then the TPN makes up the remaining 30% of the calories her body needs to grow and thrive. As the percentage she eats by mouth increases and her intestines continue to adapt and absorb, the TPN will be gradually decreased until her body has proven it can thrive without it. The day her line is finally removed will be a very happy day!

This is Carly's nightly concoction of meds, TPN, and feeds. If I prep this all by myself, it takes me around 45 minutes to prep everything you see on the tray and then another 20-30 minutes to get her hooked up to everything and to give the meds. When Mike and I tag team it, we can get everything prepped and hooked up to her in about 30-45 minutes, which is pretty good time.

Carly can't go swimming, but she can take an occasional bath as long as we are really careful to protect her central line & dressing from getting wet. So we cover her dressing with Glad Press'n Seal wrap and then tape the edges with tape to prevent the dressing from getting wet. She can then play in an inch or two of water for a little bit, which she loves.

Being on TPN sometimes stinks because it means you get sick a lot and have a lot of hospital stays. Carly can go from running around as a happy, energetic, mess-making toddler like this:

...to not eating, running a fever, being lethargic, and just wanting to be held in a matter of just a few hours.

When she gets like that it's very concerning because it could mean she's developed a line infection. We monitor her temperature very closely when she is like that and have to head to the ER if the fever ever hangs out above 100.4 degrees because line infections can become life threatening very quickly.

Unfortunately she developed her very first line infection about a week after her first birthday back in November, which required a 5 day hospital stay. She was then sent home on 3 antibiotics, which we had to run through her Broviac (the IV line in her chest)--the first one (Ampicillin) every 6 hours for 20 minutes, the second one (Ciprofloxacin) every 12 hours for 40 minutes, and the third one (Vancomycin) we had to keep locked in her line when the others weren't being run through it. We had to run each of those several times daily for 2 weeks straight, so it made it really tricky to leave the house during that time. Antibiotics completely destroy her already destroyed gut which exasperates her diarrhea and doubles her already heaping pile of daily poop soiled laundry...

Yes, that right there is one day's worth of Carly's laundry: 3 crib sheets, 3 blankets & 9 outfits all covered in diarrhea. Yummy.

Her 2nd line infection happened the end of April, so we enjoyed another 5 day, 4 night stay on the exotic 3rd floor of Primary Children's. The nursing staff and doctor's there have come to know Carly well. Carly enjoys growling at them...ha! They again sent her home on a similarly scheduled concoction of antibiotics, which we ran through her Broviac (the chest IV) and then they placed a PICC line in her arm, which is where we ran her TPN through during those 2 weeks while the Broviac was being treated for the infection.

She's been doing so great since her last infection and really is progressing so well. She has an occasional set back or emergency situation here and there, but for the most part, she is doing phenomenally well.

Developmentally, Carly is walking (started around 18 months old) and can say mama, ba-ba, ball, up, uh-oh & dada. We call her "destructo baby" because she is constantly running around the house destroying everything. Here's a clip of when Carly first learned how to climb up stairs (in December)...

And a clip from when she learned how to climb down the stairs (early June)...

Carly is an amazing little girl who I know is on a special errand from the Lord. Part of that errand has been that of changing my heart as her mother, though I believe she has more work to do than just that. It takes great sacrifice and a complete loss of self to care for Carly. But in doing so, I have witnessed the great blessings and joy that come through sacrifice. Through Carly, I have learned the complete necessity of relying on our Savior. I feel His hand on a daily basis giving me the strength and support necessary to do the things that are required of me. When I feel I can go on no more (which is often), His grace and atonement carries me. Our family is learning greater patience, humility, charity and faith. We are being molded into far better people because she is in our lives.

Favorite quote this week:

"Worrying doesn't take away tomorrow's troubles, it takes away today's peace."

Life rules!

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