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 Carly and I spent the entire day yesterday chillin' like villains at the hospital while they got her all fixed up. Carly 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 Carly 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 Carly'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 Carly's crib in with Lilly.

The office is still a disaster but at least we have Lilly and Carly'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 Carly 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 Carly at first. Then she wanted to touch her. Then she brought Carly 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 Carly 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 Carly 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 Carly 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 Carly'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 Carly'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 Carly. First the backpack, then Carly. First the backpack, then Carly...

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 Carly's dietitian adjust her TPN order accordingly. Carly'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 Carly'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. Carly 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!

Carly 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 Carly 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 Carly'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 Carly'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 Carly 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 Carly!
We love you sweet Carly 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!
Related Posts Plugin for WordPress, Blogger...
Related Posts Plugin for WordPress, Blogger...