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!