Carly's 1st Birthday

I am a firm believer that fortune cookies always come true! On August 26, 2014, I opened a fortune cookie that said, "A small lucky package is on its way to you soon." Two months later, on October 25th, a very small 2 lbs. 4oz. package came into our lives and changed it forever. We feel so beyond lucky to have been chosen to be Carly's parents. It is hard to believe she is already one!

Here are some photos from her special day:

We had a special dinner to celebrate Carly's birthday and invited all of her family and two birth families to attend.

This little girl seriously has so many people in her life that love her, support her, and pray for her.

This adorable outfit is one that Lilly wore on her 1st birthday and Carly looked every bit as adorable in it.

Carly is crawling around like crazy, so Mike added wheels and a cord to a little plastic bin so she can pull around her TPN with her wherever she goes. She is loving the new found freedom to explore it has given her!

Carly with her cute cousin Oakland.

Carly got spoiled with lots of cute clothes, toys, books and diapers. 

Mike and Ike even got a special gift...hehe!

Carly's little gut can't tolerate any sugar, so she got to enjoy a sugar free birthday cake (it was actually quite yummy!)

 Happy birthday sweet Carly! We sure do love you!

Health Update:
Carly is doing AWESOME! Her new G-tube has made a world of a difference! She now weighs 14 pounds! Her dietitian has been ecstatic with her weight gain and just called to tell me that we can reduce her TPN from 21 hours a day down to 18 hours a day, which means she can be free from her backpack for a whopping 6 hours a day...wahoo! Since the G-tube was placed, we've also seen improvements in her liver enzymes and they are almost back within the normal range, which is so great! Her liver biopsy did show TPN related liver damage, but the good thing about that is that once she gets off of the TPN, the liver should be able to eventually heal itself.

They did a blood test to determine the absorptive function of her remaining intestine (serum citrulline). Studies have shown that a serum citrulline >19 means that you'll be able to get off of TPN more quickly. Carly's citrulline is at an 11, so that indicates it may take her a little longer than we were hoping for her to get off the TPN, but every one is different, so we are praying it will still end up being sooner rather than later.

"Be kind to unkind people. They need it most."
-Ashleigh Briliant 

Life rules!


Carly's Surgeries

This past Thursday we had a very eventful morning! I went to get Carly out of her crib in the morning and found her lying in a pool of dried blood with her TPN leaking everywhere. I immediately knew her line somehow broke during the night, so I frantically searched to find where the break was. We are super diligent about securing the line to her pajamas at night to prevent this very thing from happening, but somehow she still managed to break it! Broken lines are an emergency because they can cause life threatening infections. So after finding where the break was, I hurried and got the line clamped off, changed her out of her blood & TPN soaked clothes, threw her (figuratively) and my emergency to-go bag in the car and raced off to the emergency room up at Primary Children's. Because the blood was already dry when I found her, I feared we might be dealing with a clotted line, which would mean surgery to pull the line and place a new one.

After a few hours in the E.R, the IV team was finally able to get the line repaired, but when they tried to draw blood back from the line to see if it worked, they couldn't get anything out, which meant it was indeed clotted. At that point, they tried putting TPA (a substance that dissolves clots) through the line in three rounds. Since each round of TPA takes an hour, it meant three more agonizing hours of waiting. Unfortunately none of the attempts cleared the clot, so we ended up having to be admitted and a line replacement surgery was scheduled for the following day.

Since we already had her g-tube placement & liver biopsy surgeries scheduled for the end of the month, we asked them if they could just go ahead and do those surgeries at the same time as this one so we wouldn't have to come back and put Carly through this all again. They okay-ed it with Carly's doctor and all three surgeries were scheduled for 3pm the following day.

The surgeries lasted about 3 hours. This picture shows what they did. They pulled out the clotted central line and placed a new line (the purple line) in a new spot. We asked the surgeon if he could use a stronger line this time to hopefully prevent any future breaks. We have been so fed up with how weak and poorly designed the first line (Cook 3.0 Broviac) has been, so our doctor recommended the surgeon place a super sturdy one called a Power Line. Then they did a liver biopsy and poked three little holes in her abdomen for that. We're still waiting for the results on that. Then they placed a g-tube, which we'll use to start running continuous feeds directly into her stomach at night to hopefully help fatten her up so she can get off the TPN more quickly.

We can also use the g-tube to give her meds, which I'm way pumped about because she hates taking them by mouth.

After the surgery she was miserable! Even though she was on pain meds, she was still in so much pain and just moaned and cried in a squeaky little voice (being intubated for the surgery caused her to lose her voice). All she wanted was to be held by her mama, which I was more than honored to do. I snuggled her up against my chest and rocked her the majority of the night after surgery because if I tried to lay her down in her bed, she would start crying out in pain and misery. Getting next to no sleep was hard on my body, but having that time alone in the hospital with her for those five days was a really special experience for me. On several occasions as I held her in the midst of her pain and agony, she looked directly up at me and locked eyes with me for the longest time. As she looked at me, it's as if I could feel her little spirit saying, "Thank you for giving up your life to be my mommy. Thank you for giving up your life to be here for me." We had several very tender and special moments like that during her stay that I will cherish forever.

During the five days Carly was in the hospital, she had lots of fun visitors stop by to see her.

When she was feeling a little better we were able to take her down to the play room where she played house with Uncle Ike, Aunt Amy, Bryson & Lilly.

Carly was fascinated by this mirror in the playroom and kept giving herself kisses...

It was so cute!

She couldn't play for very long because it tired her right out!

She also got to go on several walks outside where she loved watching and listening to this waterfall.

Before we got to go home yesterday, we were trained on how to care for and use her new g-tube. A nurse came over last night to teach us how to hook up and use the feeding pump, which we have set up by her crib.

The plan is that she'll continue to be on TPN for 21 hours a day. During the day, we'll continue to feed her bottles every 3 hours and solids as she'll take them. Then at night from 8pm to 8am we'll hook up the feeding tube and have it run through the night. It will pump baby formula into her tummy all night, which will hopefully give her the added calories she needs to start gaining weight more quickly so she can eventually get off the TPN.

The cute child-life specialist at the hospital sent home this little doll with a g-tube that Lilly has enjoyed playing with. She pulls it out an mimics me as I care for Carly's g-tube.

Also, something pretty amazing happened right after we brought Carly home from the hospital. We put her down on the floor to play and instead of scooting around on her tummy like she did before her surgery, she got right up on her hands and knees and started crawling for the very first time! I think her tummy was still hurting her enough from her surgeries that she realized she'd have to crawl if she wanted to get anywhere without pain. So apparently all you need to do to get a baby to finally start crawling is give them a g-tube...ha! Who knew! Check out her mad new crawling skills:

I often look at Carly in amazement. Almost a year ago her surgeon came out of the operating room and said to us, "I am so, so, so sorry. It doesn't look good. It's highly unlikely she'll make it. We've done all we can do." But now look at her! She is such a determined little girl and doesn't let anything stop her! Premature birth...nope! Gastroschisis...no way! Necrotizing Enterocolitis...nah! Short bowel syndrome...never! Central line and g-tube surgery...absolutely not! This girl is a fighter through and through!

We love you Carly! Keep rockin' on!

Favorite quote this week:

"God gives his toughest battles to his strongest soldiers."

Life rules!


11 Months Old

This little ray of sunshine is 11 months old! She is still hovering right under 13 pounds and weighs 12 pounds 15 1/2 ounces. She has been eating so much better lately and eats up to 2 ounces per bottle (every 3 hours, 7 times a day) as well as some solids. Two ounces probably doesn't sound like much, but for her it's awesome! Although she's eating much, much better, it's still just not enough to help her gain enough weight even with TPN, so she will be going in for surgery in a few weeks to have a G-tube placed in her tummy. The G-tube will allow us to feed her whatever she doesn't end up eating by mouth through the tube so she'll always get the full amount given regardless of how much she eats by mouth. She is still off the lipids/fats because her liver enzymes have remained elevated, so that's another reason why it's been difficult for her put on weight lately. Hopefully the extra help from the G-tube feedings will help her gain the weight she needs to someday get off the TPN.

At the ultrasound for her liver and gallbladder everything looked okay except that they found some enlarged nodes on her bile ducts. Her doctor suspected an issue with her bile ducts, so this confirms there is something going on there. He has ordered a liver biopsy that will take place the same time the G-tube is placed and hopefully that will help determine exactly what is causing her elevated liver enzymes, her jaundice, her crazy itchy legs, and her pale yellow poop.

She also had a swallow study done the same day of the ultrasound and she swallows like a champ, so yay for good news there.

At the time of her G-tube surgery, they will also be doing a test to measure the current length of her small intestine. When she was released from the hospital back in January it measured at 31.5 cm, so the hope is that it will have grown some. The longer it grows, the more surface area she has to absorb calories & nutrients and the greater her chance of someday getting off TPN, so we are crossing our fingers it has grown some. Regardless of any growth, she will most likely need a bowel lengthening surgery before she'll be able to be taken off the TPN. But as always, only time will tell.

This is Carly's nurse that visits us every other week (sometimes weekly) to draw Carly's labs, weigh her and to test her blood sugar. Carly has been having issues with her blood sugar dropping to really low levels during and while she's off TPN, so he taught us this month how to use a glucose meter so we can keep tabs on her glucose levels.

Although she has a lot going on with her little body health-wise, this little girl doesn't let it stop her! She is totally on the move and is army crawling everywhere. She isn't quite crawling yet, but will get up on her hands and knees and rock back and forth. When she's moving around, we have to keep a close eye on her because of her line. She army crawls to as far as the line will let her go and then we move the backpack next to her and she'll take right off again.

I took this little clip of her while she was unhooked from her TPN the other day to show you her killer moves...

I found the cute mini backpack you see in the pic here and I'm so in love with it! I was excited to find a backpack actually small enough to fit on her back so that once she starts walking she'll be able to carry around her own TPN.

 Carly LOVES to go on walks around the neighborhood. Lilly loves to push her.

This is something I've been meaning to share on here for a couple of months. This is an all about me poster that Bryson created at the end of 2nd grade. I love that he drew Carly attached to her little back pack and especially loved his one wish. He is such a sweet little boy and prays for her to get better every day.

We all do.

I am so beyond grateful for the opportunity to be this little girls mother. She has brought such a special spirit into our home. Yes, she is adopted and not mine by blood, but she is in every way my daughter by spirit and through love. I needed to be this girls mother. I needed to know her special spirit. I needed to be changed by her. I needed to learn the things that only she could teach me. She is such a blessing and I love every piece (& missing piece) of her.

Favorite quote this week:

"Sometimes doing the most important thing eternally – doesn’t look like you are doing anything noticeably."

Life rules!
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