4 Months Old

This sleeping beauty is now four months old! She's still a tiny little thing but is gradually putting on weight and now weighs 8 lbs. 5 oz. She's been on 24 hour TPN, but we just got the go ahead from her doctor to take her off/disconnect her from her backpack for two hours a day, so they just sent us out new 22 hour pumps (progress, wahoo!). Carlee really is progressing amazingly well so far. She is up to 32mL (about 2 tablespoons) of formula by mouth every three hours. She's a good little eater and will usually eat all of it. Our doctor told us we can gradually increase the amount we give her but that at some point she will reach a threshold and it will become more than her little gut can handle. Here's a little diagram so you can get a visual on how little small intestine Carlee has.

She has lost all of her ileum and a little bit of her jejunum so she's missing the parts of her intestine where sodium, water, fat-soluble vitamins, and vitamin B12 are absorbed. They draw her labs each week and the only concern so far is that her potassium keeps increasing even though they keep decreasing the potassium in her TPN, so they/we are watching that closely and monitoring her for dehydration. They/we are also keeping a close eye on her bilirubin level because it has slowly been creeping up and high levels are indicative of liver damage (she's on meds to slow the damage the TPN is causing).

With short bowel syndrome, she'll continually be at risk of:
  • bacterial overgrowth (bacteria moving into the small intestine from the colon) & malabsorption because she does not have an ileocecal valve
  • TPN-associated liver disease (the longer she's on TPN the more at risk she will be)
  • intestinal blockage at the connection site due to scar tissue
  • central line breaks & infections
  • diarrhea and very bad diaper rash due to constant diarrhea (she's always had the diarrhea but just started developing the diaper rash)
  • needing an intestinal & liver transplant down the road
I seriously feel like I'm back in college because my brain has been so pumped full of information these last few months. We have learned so much about short bowel syndrome and how to care for Carlee but still have so much to learn. I've joined some support groups and they have been so great to go to with my endless array of questions. It's also been so comforting to read other people's stories and to just know that we're not alone in this.
My sis-in-law and nieces sent us this adorable print that I fell in love with the second I opened it because it describes Carlee perfectly. I am continually in awe of Carlee's strength and her fierceness. Her life so far has been filled with so many surgeries and a ton of pain & discomfort but she doesn't give up and keeps fighting. She still has such a long road ahead of her but if anyone can do it, Carlee can. She is a rock star!

As I've mentioned in previous posts we have weekly family movie nights, and five minutes into last weeks movie, I looked over to find Mike and Carlee both completely conked out. I had to snap a picture because it was so arorable.

Carlee got to visit grandpa & granny's house for the first time last week and loved getting doted on by my cute niece Zyan. Carlee has just started to smile and coo and it's been so fun.

This is a very low quality photo, but I have to end with it because she looked so cute in her little bow hat. We love this little girl to pieces. Yes, she has completely flipped our world upside-down but she is truly changing us for the better. She is teaching us patience, selflessness, humility, love, faith, sacrifice, reliance on God, and gratitude. We have been blessed with so many tender mercies through this experience that there is no doubt God's hand is over all of this. We love you little miss Carlee!

Favorite quote this week:

"We must approach our Eternal Father with broken hearts and teachable minds. We must be willing to learn and to change. And, oh, how much we gain by committing to live the life our Heavenly Father intends for us."

Life rules!


Home Sweet Home

This beautiful little lady is finally home from the hospital! Yay! She arrived home on January 31st and is now 3 1/2 months old and weighs 7 lbs. 14oz. We visited her GI doctor, Dr. Jackson, yesterday up at Primary Children's and he said she is progressing well so far, except for a small issue with her central line. The issue needed immediate repair, so Carlee and I spent the entire day yesterday chillin' like villains at the hospital while they got her all fixed up. Carlee will have monthly visits with Dr. Jackson and in between visits he'll be keeping a very watchful eye on her progress.

The week leading up to bringing Carlee home was crazy insane at the NICU and consisted of hours upon hours of training. They pumped me so full of information each day it left my head spinning! They taught me how to change the dressing on Carlee's central line using the handsome mannequin above. The dressing change has to be done in a completely sterile environment so I practiced over and over again until I felt comfortable with the process. They also taught me what to do in case of a central line emergency, which I was so grateful to know a few days later when one actually happened (I'll get to that in a minute). We also had to learn CPR and do a car seat check before they would allow us to bring her home.

Back at home I ran around like a chicken with my head cut off trying to get the house ready with the little time I had. We had to move Lilly's bed and furniture into the office (the larger of the upstairs bedrooms) and move all of the office furniture into Lilly's old room so that we'd have room to fit Carlee's crib in with Lilly.

The office is still a disaster but at least we have Lilly and Carlee's room somewhat situated. I'm excited to paint and make over their room in the near future. We have another matching red bed that we plan to have Carlee use when she's big enough.
We arrived home to this cute banner on our garage that the young women & leaders made and signed. It was so thoughtful of them and helped us feel so loved.

They also lined the street coming up to our house with pink ribbons and tied ribbons and decorations all over our front porch. I know it was a simple act of kindness by them, but that simple act was huge in our eyes and touched us so much.

Here are a few clips my sister took of Bryson and Lilly meeting Carlee for the first time...

Bryson was ecstatic and came running out to the car as soon as we got home. Lilly, on the other hand, was groggy from napping and didn't want anything to do with Carlee at first. Then she wanted to touch her. Then she brought Carlee all of her stuffed animals. Then she wanted to hold her. It took her a few minutes to warm up to her...
...but now Lilly can't get enough of her!

Neither can I.

My parents were so sweet and made us an amazing dinner that evening and we had fun Skyping with my little sister

A few visitors stopped by including our home care nurse and then after a few hours everyone left.

Right after everyone left I picked Carlee up to take her into another room and completely forgot about her being connected to her TPN bag (having a baby connected to backpack is a totally new thing to me)! I turned with her in my arms and took a step and SNAP! Her central line about four inches from where it came out of her chest completely snapped! I immediately yelled for Mike and he ran in and pinched off the line (it was dripping with blood) and I quickly dug through all of her hospital supplies to find a clamp the nurse sent home with us and got it clamped off. We learned that if the line ever breaks (which the kind she has tends to often), that it's imperative to clamp the line as close to her body as quickly as possible so that bacteria doesn't travel up the line and cause an infection. Once the line was clamped, I called our home care nurse hoping it would be something she could come back out to fix, but unfortunately she said we needed to go to the ER. I asked if we could just go to the ER at the closest hospital and she said that Primary Children's is the only hospital capable of fixing a newborn central line break. So I called my sister, who had just left and had her hurry back to watch the kids and we packed Carlee in the car with all of her supplies and raced back up to Primary Children's. It was so frustrating and I felt like THE worst mom ever! Here she had only been home just a few hours and we were already headed to the ER! We ended up spending the entire night there in the Rapid Treatment Unit (RTU) and didn't get home until 4am. So we spent what should have been our first night home with Carlee back up at Primary Children's. :( It was a very long and frustrating night. But you can bet I will never make that mistake again...sheesh!

This is Carlee's TPN backpack that has to go everywhere with her. Inside you can see her TPN (the clear yellow fluid) and her lipids (the white milky fluid). Each bag is connected to a pump that pumps the liquids through the lines and into Carlee's superior vena cava (the large vein at the top of the heart). We can only disconnect her from it for a few minutes each day while we change her bags or her blood sugar will drop. If the lines ever kink (which they do a lot) the pumps beep and we have to find the kink and fix it. To prevent another line break, we are training ourselves to first pick up the backpack and then pick up Carlee. First the backpack, then Carlee. First the backpack, then Carlee...

We have a home care nurse that comes each week to change her dressing, draw labs, and check her vitals. He sends in the labs and then Carlee's dietitian adjust her TPN order accordingly. Carlee's doctor, dietitian & pharmacist call regularly to check up on how she's doing and to let us know of any changes being made. We get a weekly delivery of Carlee's TPN, lipids and medical supplies. We change out her lipids and TPN daily, which is about a 45 minute process. It has taken a lot of practice, but we finally have it down. The process entails adding little vials of vitamins to the TPN, spiking the TPN and lipid bags, changing and purging the lines, flushing her central line with saline and starting the pumps. Carlee also receives meds 8 times a day. She eats 25-30 mL every 3 hours by mouth and then the TPN runs 24/7 to supplement her feedings and to keep her nourished.

There is so much we have to keep track of that I created this daily chart to be sure we don't miss anything. We were feeling so overwhelmed by everything the first two days but creating this has really helped us stay on top of things and feel more comfortable with everything. I'm sure eventually this will all become second nature to us, but for now this is working so great!

Carlee has now been home a week and a half and we have loved every second of having her precious spirit in our home but at the same time it has been a huge adjustment. In all honesty, having Carlee in the NICU for 3 months was a walk in the park compared to having her home. We were expecting it to be hard, but it has been a lot harder than we thought it was going to be. We didn't realize how much time Carlee's medical issues would take to attend to each day and it's been a struggle to find a balance between taking care of all of Carlee's needs as well as being able to attend to Bryson and Lilly's needs while still fulfilling all of our many other responsibilities. But this is our new reality and I'm sure we'll eventually settle into it just fine--we are just still in the "trying to figure it all out" stage of this new chapter in our lives.

I taught in young women's this past Sunday and this video was in the lesson. As I watched it, I felt like I was watching my new life and felt as though the video was created just for me. The medical stuff this girl has to do every day is the very stuff we now do for Carlee daily. This girls life is our new life. Our new life is stretching us in every direction, humbling us to tears, and some days we feel like maybe we don't have what it takes to do this. That maybe we are going to fail. But deep down we know the Lord isn't going to allow us to fail. Our faith is certainly being challenged, but faith has to be challenged in order for it to grow. As hard as it is, we love our new life and are so grateful for all it is teaching us.

Our first family picture with Carlee!
We love you sweet Carlee and are so happy to finally have you home!

Favorite quote this week (this is actually an essay Mike's mom shared with us that has brought a lot of comfort):

(click to enlarge)

Life rules!


3 Months Old (and some exciting news!)

This little lady is 3 months old today! She weighs 7 pounds on the money and we were told tonight that she'll (hopefully) be home by the end of the week! WAHOO!!! It's hard to believe it's finally happening! They told us we need to bring in a car seat tomorrow or on Tuesday so they can have her do a car seat test before we bring her home. They'll put her in the car seat for an hour or two and if she can sit in it safely without her stats falling at all, then she's good to go home!

Yesterday Carlee had a minor little surgery (hopefully her last) to have a central line placed. This is what we will use when we bring her home to deliver her TPN. We will be trained this week on how to administer that to her and how to calculate how much she will need daily based on her oral feedings. We will also be CPR trained. We're feeling a little overwhelmed at the thought of having her cares (aka: life) in our hands when she comes home, but we're sure once we're trained we'll feel much, much better about things. There's no way we're bringing her home until we both feel totally and completely comfortable.
This is how Carlee looked yesterday right after they placed her central line (the line going into the yellow circle). The line going into her arm is what the hospital has been using, but that has now been removed. The central line is what we will feed the TPN through until her intestines can start absorbing enough nutrients on their own through her oral feeds for her body to grow and thrive.

These are the cute signs the hospital has been making for Carlee to mark each month she has been there. They are so cute, but we are glad we won't be seeing any more of these (knock on wood). We are so beyond excited to finally get our little angel home!

Now we need to buck up and get Carlee's room ready (gasp!). I know, I know.... it's probably shocking to hear that her room isn't put together yet. We've had it on our to do list for weeks, but our lives have been a whirlwind lately and finding time has been hard because it involves swapping a bunch of big pieces of furniture between two rooms. We planned to get it ready yesterday, but then Mike ended up flying out to Arizona to be with his granddad, who is on the verge of passing away (I will post about Mike's amazing grandpa and Mike's experience visiting him soon) and Carlee ended up having her central line surgery, so it didn't happen....yet again. Hopefully we can find time to get it put together bit by bit this week. If not, she may be spending her first few nights in a box (only kidding about the box, but the article in that link is pretty interesting).

We may not have Carlee's room prepped yet, but we are prepped with a freezer full of meals! Mike and I spent last Sunday afternoon getting tons of freezer meals made so that we'll be able to focus solely on Carlee when she comes home without the stress of having to cook, which will be so nice.

The next chapter in Carlee's life is about to begin...yay! It is still filled with many uncertainties, but we are looking forward with hope and faith. We have witnessed so many miracles take place through this experience so far (I'll have to dedicate a future post to sharing some of them) and we know many more are yet to come. This experience is changing us for the better and we are so grateful for it. Yes, it has been hard, but amazingly it hasn't felt hard because we have truly been buoyed up by our Savior. His atonement is real.

Favorite quote this week:
"We are not obedient because we are blind. We are obedient because we can see!"
-Elder Boyd K. Packer

Life rules.

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