"No More Pictures Please!!!"

Grandma and Grandpa Roper went to New York last weekend and brought back Kate this cute onesie....I think "Little Stinker" should've been included!!

I've been slacking with keeping up with the blog lately. I guess I don't have as much free time as I used to. We are feeling like life is getting back to normal for us......whatever normal is! Kate is continually improving day by day. Her g-tube is looking great and is healing really well. She's also getting used to the CPAP at night and doesn't fight it as much. We're really liking getting a good night's sleep!!! On Wednesday, Kate is going in for a sleep study to monitor how she is doing at night on the CPAP. I'm not really looking forward to it as she goes into the clinic at 9:30 pm and the test goes until 6:30 am. This will give us a good idea how her Trachea is handling the CPAP. I also take her in every 2-weeks to have blood work done. This is mainly to test her electrolyte count and her CO2 levels. She also qualifies for the RSV shot again this year.....thank goodness. So, we're going to be pretty busy trying to stay on top of all her appointments.

Life is Good!

Well, it's almost been a week since Kate has been home and I am happy to say that she is finally sleeping through the night again. In fact, we put her down at 8:30 last night and she slept until 9:00 this morning....you can't ask for more than that. It's amazing to see the changes in Kate since her respiratory issues have improved. She has so much energy now. She came home on 2 liters of oxygen and we've been able to turn her down to 1 liter, so that is a great improvement. We are convinced that being at home is the best medicine:)

We're Home!!!

"We're Outta Here"

It took Kate a little while to adjust to being outside.

This is what being in the hospital did to nap time. I went to check on Kate about 30 minutes after putting her down for a nap and she was wide awake showing no interest for sleeping. That's going to have to change :)

Well, we made it. Kate was released from the hospital on Tuesday afternoon. Unfortunately, Bryan did end up going to Nebraska, so my mom came up to stay with us while he is gone. It's been a little bit of an adjustment (i.e. a lot more equipment, wacky sleeping schedule, etc.), but it is so nice being home. It's kind of sad, because we made a lot of friends while we were up there and are going to miss all of Kate's fabulous nurses. She has done really well since she has been home, but we are going to have to work on her sleeping patterns. She seems to have picked up some bad habits in the hospital :)
From here on out, it's just going to be a matter of time for her Tracheomalacia to heal to the point where her Trachea is stronger. Most babies outgrow it anywhere from 18-months to 3-years, so we just have to wait and see. Needless to say......we are very happy to be home!

We're coming home!

So, it's official! Kate is finally coming home! The plan is for Tuesday. However, Bryan is going out of town for work and so we may push it back until Thursday (depending on how confident I am with doing it on my own)......we'll see. We are so excited and ready to have her home. To help adjust.....Bryan is going to start working from home a couple days a week. Bryan's work has been so great to us throughout this past year and we are so grateful for their willingness to accommodate our family situation.

Kate has been doing so great. In fact, we had to start diluting her formula because she has been packing on the pounds!! It's funny because we were so worried about her losing weight while being in the hospital, so I guess that's one less thing to worry about :)

Going home soon......we hope!!!

Yes I know, it's been a few days since I've updated the blog.....but for good reason. A lot has been going on the last couple of days and we've actually been moving forward with getting the discharge plans in order for Kate. She's been breathing awesome on her trials on a nasal cannula (just like she was at home), but at a higher flow. When she was home, she was on 1/4 liter of oxygen, but is now requiring 2 liters to give her more support. The need for this amount of oxygen should go down as she gets stronger. So, the plan is to come home on a regular nasal cannula during the day and CPAP at night. We feel so blessed and know that our prayers have been heard and answered. We had hoped that she would not need a Trach, but at the time we knew that this was a very possible option. We are so grateful that we listened to our gut feeling and chose not to go through with it. Kate has definitely redeemed herself.

Right now, the only thing that is holding things up is the G-Tube. It got pulled shortly after surgery, which opened the hole in her stomach, causing a significant leak. So, we've been waiting for the wound to heal so we can go home. Right now she is being fed through an NJ tube (going into her intestines) because she cannot have anything going into her stomach, as it would cause more leakage. She has to have this tube for venting purposes, so we have to figure out what's the best way get this to heal. Best case scenario......we'll get her home the middle of next week. After almost 6-weeks of hospital life.....we are ready to come home!!!

Bouncers, Bubbles and Balloons....

We decided to give Kate a little bit of a break and have some fun. She loves bubbles and has had so much fun playing with the balloon her little friend Kacee gave to her. She's mesmerized by it. We also brought her favorite bouncer from home. I think she was glad to be able to sit up for once. It's so great that she has been doing much better because it gives her a little more freedom from just being in her bed all the time. She was a happy girl today.

Still not much has changed. Kate continues to do well on her oxygen trials. She is now getting about 12-hours a day on the high-flow oxygen and 12-hours on the BiPAP, so she is getting closer. However, she can't come home on the high-flow oxygen.....she has to be just on the regular flow. It's a slow process, but we are encouraged that she is moving in the right direction.

One step closer...

Showing off her big tooth.....she's got quite a mouthful!

Yes.....we are still here, but Kate is getting better and better each day. As you can see, we've tried her on a nasal cannula. She is getting 4 three hour trials on the cannula each day. So far, she has done really well. The goal is for her to handle being on the cannula during the day and BiPAP at night. From the way things are going, this may be possible. We are willing to wait as long as it takes, though because it beats the alternative. She is much happier when she gets a break from the BiPAP. It's great because her doctor says that she loves when her patients prove her wrong and Kate has done that. She wasn't very optimistic about Kate going home without a Trach. We still don't have an idea as to how much longer she is going to have to be here, so we just have to be patient.

28 days.....

Just hanging out in the hospital....we're kindda bored!
Kate got a little break from her mask. We think she's much cuter without it : )

We are tired of being here. This has been a long 4 weeks. When Kate is asleep, there's not much for us to do. The last couple of days, she's been on a schedule of sleeping during the day and awake throughout the night. She is such a sweet, patient baby, but she is tired of being here as well. It breaks our hearts because the mask she has to wear has caused sores on her face. We've been able to take her off the BiPAP to give her a break from the mask. She does really well on blow-by oxygen, but gets quite tired after awhile. We're still not 100% convinced that she needs a Tracheostomy at, as she has had some really good, hopeful days. It's just a difficult decision for us to make. At this point, we still want to give her a few more days to prove herself. Therefore, she most likely won't go in for surgery tomorrow.