A New Beginning!

The past 2 weeks have brought on a whirlwind of emotions. Having to say goodbye to Kate was heart wrenching. But what's been even harder is trying to get back to real life. The funereal service was amazing. The spirit was so strong and I felt such a feeling of hope. We feel so grateful for the tremendous amount of support we have.

This was the dress we chose for Kate. I think it was very fitting for her.

We haven't chosen a headstone yet, so we wanted to have something to mark the grave site.

It has taken me 2 weeks to finally get on the blog again and it hasn't been easy. Blogging has been such a big part of my life the past 2 years and I can't bear to keep it going. So, I am going to end with this posting and I've created a new blog for our family. I have included the link below. Again, We just want to express our love and gratitude for the many thoughts and prayers.

Our new blog: The Rosenvall's

Kate's Celebration

Bryan and I along with our families can't even begin to express how grateful we are for the outpouring of love and support we have been shown during this very hard time. We want to invite all to join in the celebration of Kate's life.

We will be holding a funeral service for Kate on Saturday, March 29 at the Cedar Hollow 5th Ward (1050 East 1900 North - Lehi, UT) at 11:00 am. There will also be a viewing Friday night at the Wing Mortuary (118 East Main Street - Lehi, UT) from 6:00 - 8:00 pm and also one prior to the services on Saturday from 9:00 - 10:30 am.

I have attached a link to the obituary. I think this is my very favorite picture of Kate:

Kate's Obituary

Sweet, Sweet Kater Bugs!

Our sweet little Kater Bugs returned home last night to be with her loving Heavenly Father. We miss her tremendously, but know that Kate fulfilled her mission here on this Earth. We feel so incredibly blessed to have had Kate as long as we did, considering her odds. We always said that Kate has the biggest heart of anyone we know.....and physically she did, but her little body couldn't compensate for it. She touched so many lives and we have felt so many prayers in her behalf. Kate brought an immense amount of joy and happiness into our lives and the lives of others and we feel so privileged to have spent the short time we had with her. She taught us so many valuable lessons that we will treasure. We are so grateful for the Plan of Salvation knowing that we are and Eternal family. We love you Princess Kate!

HAPPY EASTER!

All dressed up with no place to go!!!

I've had a hard time accepting that Easter came so early this year. It seems like we just finished celebrating Valentine's Day. I guess it goes to show that time sure flies by.

I love Easter....not because it's a sign that Spring is here or the fact that I can stock up on Mini Cadbury Eggs (however, those are just a bonus), but because it is a time to celebrate the Resurrection of our Savior. I am so grateful for Christ's atoning sacrifice for us and what a blessing the atonement has been in my life.

This Easter was a little different for our family. In years past, I have enjoyed spending time with both our families doing traditional Easter stuff. With all of Kate's new accessories, it makes it hard to go anywhere. So, Bryan and I decided to stay home this year and spend Easter just the 3 of us. We didn't start any new traditions, but I did make a mighty fine roast :) My brother and his cute fiance, Kirstin, surprised us with a visit on their way back from Fillmore, so that was nice hanging out with them.

There Must be Something in The Water.....

We are so excited that Kate was able to come home yesterday. We are definitely ready to have her out of the hospital.....and so is she. Amber (our home nurse) was able to come up and help me bring her home. We feel so lucky to have Amber. She has been such an amazing help. We actually weren't expecting Kate to come home that soon (we thought it would be closer to the weekend), so I had previously planned a night out with my girlfriends. Well, Kate was released about 4:00 yesterday afternoon and I thought this is plenty of time to get home, get Kate situated and drive back up to SLC to meet the girls for dinner at 7:00. But, there always seems to be some kind of "bump in the road." There was a pretty bad accident right before 215 and I-15 merge which caused a significant backup to about 2000 East. Needless to say, we arrived home at 6:20. Thanks to my AMAZING husband (who was home waiting for us) we got Kate all situated, I dropped Amber off at home and was at Mimi's Cafe by 7:05 (no speeding involved......well, maybe just a little).

Gina, Teresa, Me, Treo (the 4th prego girl)

I love being able to spend time with my girlfriends. It's so refreshing to get away for a few hours and just talk and laugh. I have some pretty amazing friends. Not to mention 4 of us are pregnant and due fairly close to one another....there must be something in the water???

P.S. Only 31 more days to go!!!!

Wearing O' The Green!

I wanted to share some cute pictures of Kate. The rule on St. Patrick's Day should be that if you are in a hospital and wearing GREEN, then there shouldn't be any pricks, shots or pinches. Well, at least there were no pinches today :)

HAPPY ST. PATRICK'S DAY!!!

Count your MANY blessings!!!

Kate has been doing much better the past couple of days. Things are looking like she will be coming home one day this week. Since Kate was so sick, her kidney function has decreased slightly but the neuphrologist thinks that this will heal on its own with some time. ....whew! So far she has shown improvement. They want to observe her over the next couple of days and make sure her electrolytes are staying balanced. Also, tomorrow is the last round of Synagis (her RSV shot). It's been such a relief knowing that Kate has been somewhat prevented from getting RSV. She has to have 1 shot a month during the season (November - March). We have been so blessed that she has not gotten this nasty virus........especially considering 1/3 of the patients are here because of RSV. Adios RSV season!

On a different note.....Bryan has been working hard trying to get the odd and end things done on our basement. We have the carpet layers coming tomorrow to lay the carpet, so he has been trying to get all the painting and trim done. I sometimes think we are a little bit crazy adding more and more madness to our lives. However, I must admit that it will be so nice to have our basement finished, especially before the baby gets here. I'm happy to say that I have only 5.....yes count them.....5-weeks left. We are so excited for this new little addition to our family.

Normalcy.....What's Normalcy?

As sad as it is for me to say....we had to make the much dreaded trip back to Primary's. We have had a stressful week. It first started last Saturday when Kate spiked a fever. No big deal....just give her some Tylenol and let her rest. Well, that seemed to work until the Tylenol wore off. This continued to be the trend the rest of the week. On Tuesday, we took her in for some blood work at AF Hospital. Well, everything came back pretty normal except her white blood cell count was really high. With Kate's symptoms, they thought she may have mono. So, they did further testing and the mono test came back negative. So, we just kept doing what we were doing. It wasn't until yesterday that we became VERY concerned. Bryan and I woke up yesterday morning around 3:00 am and Kate was burning up.....she was running a temp of 104 degrees. But, the crazy thing was all of her extremities were ice cold and her heart rate was around 170, when it's normally around 120-130. So, we stayed up with her to try and break her fever. We weren't having much luck. Around noon, she spiked a fever of 106 degrees. Finally, after doing all we could do at home we made the decision to take her to the ER. I'm so glad we did.

Kate was really sick. Upon arriving, things moved so quickly. They immediately started taking blood samples to test for all viral and bacterial infections. It turns out that Kate tested positive for a staph infection in her blood. The most frustrating thing is that the test results came back last Wednesday that Kate had this infection, but through lack of communication, we were never notified. Basically, it was causing Kate's little body to shut down. Her heart was pumping so hard to keep her internal organs functioning, that she wasn't getting any blood flow to her arms or legs. Kate had a pretty rough night last night. We were concerned that this infection was compromising her heart function. After doing an echo of her heart today, we found that her heart is functioning well. This was a HUGE relief, as we thought that her heart was in serious failure.

So, here we are AGAIN!!! Kate is doing so much better today. She's currently on a strong antibiotic and there are still more tests pending, but as of now she is comfortable and doing fairly well. I'm so grateful for inspiration and "mother's intuition" because we have been told by numerous people that if we didn't bring her in when we did, she probably wouldn't have made it through the night. We love Kate so much and feel so lucky to have been blessed with such a little fighter. We're just hoping that this stay won't be an extended one......

2 Reasons why I LOVE being pregnant....

Reason # 1

I just keep growing and growing and growing.....

As sad as it is to say, I think I just had my last spinning session last night :( Spinning has been a life saver for my sanity during this pregnancy. However, I must have grown significantly this past week because I went to class last Monday night and didn't have any problems. Well, it was a little different scenario this week......I couldn't quite adjust my bike just right so that my knees didn't jab me in the tummy every time my legs turned. I have come to grips that I am probably done with spinning until after this baby is born and I think the baby girl will thank me!

Reason #2
People say the dumbest things.....

So the other day, I had this insatiable craving for one of those cookies from Maverick....you know the big sugar cookies with the pink frosting? Yes.....I wanted one really bad!! Well, I gave into my craving and headed to Maverick. As I proceeded to check out, the clerk asked me how far along I was. I told her I was due in April. Her eyes widened and she said, "Oh, so you are expecting twins?" Ahhhh!!! What I really wanted to say was, "No, I'm actually expecting triplets."

Only 7 more weeks to go. I actually really do love being pregnant, but I think I am ready to be done and have this sweet baby here already!

An Answer To Our Prayers.....

We made it through week 1......whew! I must admit there is never a dull moment. Even though it has been A LOT of work and very STRESSFUL, I absolutely LOVE having Kate home. My sweet Mom came up this week to help out. Kate had a cardiology follow-up appointment at Primary's on Tuesday...and what a fiasco it was. It literally took me 2-hours to prepare the equipment, get it loaded into the car and get Kate ready before we were out the door......NOT KIDDING. Then, it was even more of a process to get her in the stroller and try and make all the equipment fit. It's making me so tired just typing about it. But, we did it and I guess that's all that matters.

Before making the decision for Kate to have this life-altering surgery, we were told over and over that there is a huge shortage of home health nurses who are specialized with trachs and we would not have any help at home. This factored, somewhat, into our decision especially with a new baby on the way. Most families who have a child with a trach generally have help. Knowing that we would be doing this on our own with the help of family and friends, we made the decision that somehow we could make it work.

A couple of days before Kate was released from the hospital, the discharge planner came to us with some great news. She said that they were able to find home nursing for Kate, not only for a few hours a week, but for 8+ hours a day 5-days a week. I can't even tell you what a blessing this has been. I was a little worried about having someone in my house all day, but it has been such a great transition. I feel like we hit the jack-pot with Amber. She is darling and absolutely adores Kate. I feel 100% comfortable with her taking care of Kate. Having her there has allowed me to take some "Me" time during the day, where I can work-out, run errands, clean my house or just take a nap. If anything, it's just nice to have an extra set of hands to help. It's amazing how things tend to work out and fall into place. I feel like some of the stress has been lifted off my shoulders and hopefully will allow me to relax and be a better mom.

"They Say It's Your Birthday...."

In honor of Bryan's 33rd Birthday.....yes I said Birthday #33, I wanted to share 33 things I LOVE about Bryan:

1. He loves being a Dad.....and he's a darn good one. It absolutely melts my heart to see Bryan interact with Kate and realize how much he loves her. Kate is one lucky girl.

2. He thinks arguing is lame. Even when I try and pick a fight, he finds a way out of the argument.

3. He does the laundry......and he's good at it!

4. He is a hard worker. He always has some project he is working on.

5. He loves life and likes to have fun.

6. His family is his priority and nothing comes before that.

7. He can fix ANYTHING!!

8. He prefers to alter his own pants (he does better with the sewing machine than I ever could).

9. He's very PATIENT!!!

10. He's very complimenting (especially when he knows I need it).

11. His glass is always "Half-Full." He is always looking at the positive rather than the negative.

12. He comes from a great family, with great parents who raised him into the man he is today.

13. He loves treats (like me).

14. He doesn't like to waste time, especially watching TV or playing video games.

15. He is dependable. If he is ever asked to do something or be somewhere, he will be there.

16. He loves to snow ski and is an amazing skier.

17. He is a great listener. If I ever need to vent (even about something lame), he will just listen and let me get it off my chest.

18. He loves my family. He's always up for a trip down to Fillmore to visit my family.

19. He makes friends easily and is a true friend.

20. He honors his Priesthood authority.

21. He is so handy. I swear he fan fix ANYTHING!

22. He is conservative with money. If we can't afford it......he won't buy it.

23. He is always respectful.

24. He is infamous for putting his foot in his mouth, but somehow always seems to redeem himself.

25. He's very nice to look at :)

26. He's not easily influenced.

27. I love that his hands are always calloused, but his fingernails are always well groomed.

28. He gives amazing back rubs and usually doesn't complain (okay, he complains a little, but ends up giving in).

29. He will watch "chick-flicks" with me.

30. He has goals. He is always looking for ways to better himself.

31. He NEVER complains. If there is something he is not happy with, he will find a way to change it.

32. He makes me want to be a better person.


33. He has 100 more qualities that I love about him, but I'm sure he will be grateful that I stopped at 33.

HAPPY BIRTHDAY BRYAN.....I LOVE YOU!!!!

Home again, Home again....Jiggity Jig!!!

Kate's a litte emotional about leaving all of her friends!
Thanks Nurse Angie for taking such great care of us!!!


Well, today was the big day and what a day it was. Everything went quite smooth, but it's been a pretty big adjustment getting settled in. However, we did it and are excited to be home. Through the transport, Kate seemed to develop a little anxiety with all the changes. We were a little worried when we got home because she had a pretty elevated heart rate and seemed to be quite agitated. However, once we got her settled in, she has slept like a baby......we'll keep our fingers crossed!!! I think the fact that she is in a quiet environment and she is not being poked and prodded all the time makes her very happy. It was a little bitter sweet leaving, as we made so many great friends while in the hospital. As hard as it was to be at Primary's for as long as we were, we appreciate the wonderful people who took such great care of Kate. I hate to say this, but I think we are going to miss Primary's. We are excited, though, to get into a routine and help Kate grow and progress.

Kate's New Look!

This is Sue, one of Kate's favorite nurses. She spoils Kate and is always making sure Kate looks her best :) In fact, she gave Kate this darling outfit so she would be festive for Valentine's Day!
I have to say...one great thing about Kate having a Trach is that it allows her to not have anything attached to her face anymore. However, I do think that it has added a few pounds to her cheeks :)

Well, I think we have fianlly gotten comfortable with the Trach. We have offically graduated from the Trach training and now have 3-days of ventilator training. I have to say it's not as intimidating as I imagined it would be. We currently have her on the ventilator she will be going home with and it's small enough to fit into a laptop bag.....Not bad!! The word around here is that Thursday might be the big day. However, we have learned from past experiences to not get our hopes up. Before Kate is released, Bryan and I have to "room-in," meaning they put us in a private room and we basically take care of her for 24-hours. This is to allow us to get used to taking care of her on our own, with back-up (if necessary). We're so excited to get Kate home and are so proud of her for the fighting personality she has and the progress she has made. We are so blessed to have such a sweet little angel.

VALENTINE'S DAY!!!

Bryan and I had a pretty uneventful Valentine's Day this year. I personally think that Valentine's Day is overrated. However, we were able to get away for a few days last week. Bryan had some business in Phoenix and when I found out where he was staying ( The Arizona Biltmore....see pictures below), I couldn't resist. So, we flew out on Monday morning and spent 2-days in the beautiful Arizona weather. We are so grateful for Grandma Rosenvall, Grandma Roper and a few friends from the ward who came and kept Kate company while we were gone. It was a much needed trip for the both of us!!

The golfing was a little pricey....okay, it was downright ridiculous. So, we just settled for the driving range. Let's just say golfing is not that easy when you are 7-months pregnant.

Happy Love Day!

I feel like I don't brag on Bryan as much as he deserves it, so I thought what better day to do it than on Valentine's Day!

I feel so lucky to have such an incredible husband. Over the past 4 1/2 years since I have known him, my life has been so blessed. Bryan is such an amazing husband, father, brother and friend. I just wanted to share some of my favorite pictures. HAPPY VALENTINE'S DAY!!!

"I'm a Big Kid Now"......Literally!

So, one great thing about Kate is that she has never had any problems gaining weight. Back in December when Kate first went into the hospital, she was in a size 3 diaper. Since then, not only has she outgrown the 3's, but she is now out of the 4's....are you kidding me??? Well, the hospital only provides diapers up to size 4, so when the 4's started fitting Kate like string bikinis, we had to figure out a better solution. So, one of our nurses brought out these "big girl diapers" (aka oversized green maxi pads with Velcro). I don't think so!!! Instead, they were able to find some Princess Pull-Ups....which were much more suiting to Kate. Even though we are far from potty training.....THANK GOODNESS for Pull-Ups!

The last 2 days have been really good. Kate seems to be adjusting to the the Trach quite well. The first 2 days......well..... not so pleasant. We had to keep her pretty sedated so she wouldn't irritate the site. She's finally been able to come off the sedation without fighting and pulling tubes. Bryan and I started the training course yesterday. We have eight 2-hour classes that we have to attend where we learn how to care for the Trach and all the equipment. It sounds overwhelming, but we have completed 2 of the classes and it hasn't been too bad. We hope to be able to finish by next week. On Tuesday, the surgeon who did the Tracheostomy, will come and change out the Trach and make sure everything looks good. From there, we should be able to talk about bringing her home. And believe me......we are so ready!

P.S. I will be posting some pictures next week when Kate is feeling a little better!

Change can be good.....Right???

I just wanted to share some cute photos of Kate. Over the last couple of weeks, she hasn't really progressed to the point where we feel comfortable taking her home. I guess the good news is that she hasn't digressed either. Yesterday, we had another conference with the doctors to figure out where to go from here. The main issue has been her blood has been very acidodic, meaning she is not blowing off her CO2 and her kidneys are not compensating. We hit the 9-week mark today and our goal at this point is to just get her out of the hospital and home. Since August, we have debated the issue of a Tracheostomy and have prayed and prayed that this would not be the answer for Kate. I think we were praying so hard that Kate would not need to have this procedure...but ignoring the answer that maybe this is just what she needs. As much as we didn't want to have to make this decision, we felt that in order for Kate to come home and improve her lung and heart function a Trach had to be the answer. Once we came to this decision.....both Bryan and I felt at peace (which we haven't felt for a while). So, early this morning Kate went in and had the Trach placed.

The surgery went really. After the anesthesia wore off.....Kate let us know that she was MAD!!! It's definitely going to take her some time to get adjusted to this, but this sweet little fighter will be able to do it.

Even though it has taken us this long to get to this point, we needed to feel as though we did everything possible to see if Kate could come out of this on her own. After feeling like we had exhausted every possible avenue, we finally feel okay with making the decision for a Trach. So from here (considering everything goes well with the recovery) she'll probably be here for another 1-2 weeks. It's so nice to FINALLY see an end in sight :)

Every Day is Groundhog Day!!!!

Do you ever feel like it's the same old thing....different day? Well, I have been feeling like this lately. I consider myself to be somewhat of a hibitual person, but when I started paying closer attention to my daily routine....I have realized lately that I have been living a "Groundhog Day" life. Let me just tell you a little bit about my typical day:

8:00 am sharp - (not a second before and not a second after) I receive a sweet wakeup call from Bryan (whether I want to wake up at that time or not).
9:51 am - I catch the bus taking me to the Sandy Trax station (this is always a treat). It never fails....the bus driver always makes the comment to me, "Breaking the piggy bank again, huh?" I am always trying to scrounge up enough change for the $1.75 bus fare (it's usually all nickles and dimes).
11:36 am - I arrive at Primary's and call Bryan letting him know that I made it safely and tell him of the MANY interesting people I encountered.
11:40 am - I pass the $0.25 candy machines in the waiting room and wish I hadn't used all my spare change for the bus.
11:45 am - I'm finally able to see Kate. We have story time, play beauty parlor and sing songs.
2:00 pm - Lunchtime in the cafeteria. I always think I am going to get something different every day and I end up getting the same boring thing EVERY time.
2:35 pm - Pass the candy machines again and wish I had a quarter.
2:40 pm - More story time and singing time.
4:00 pm - Kate goes down for a nap and I get my e-mailing and blogging done.
4:30 pm - Get a call from Bryan letting me know he has left work and is on his way up to Salt Lake.
6:00 pm - Bryan arrives and holds Kate while I finish e-mailing and blogging (maybe fit in some on-line shopping/browsing).
7:00 pm - We are kicked out of the PICU for an hour while they do their shift change. Bryan and I always debate what to do for dinner. We usually end up going to Wendy's (and I get the same thing EVERY time).
8:00 pm - We arrive at the hospital again, get Kate on her CPAP, read The Jester has lost his Jingle (Kate's favorite.....plus a personal favorite of mine), chat with the nurse for a few minutes and say our good-byes.
9:00 pm - On our way home. I call my mom and talk to her the whole way home.
9:43 pm - Go through the mail and check phone messages
10:00 pm - Watch the News
10:30 pm - Call the nurse and check on Kate.......hit the lights!!!

Then as soon as I know it....my day starts all over again!!!

HAPPY GROUNDHOG DAY!!!

Happy "30th" Birthday Gina!!!

My friend, Gina, and I have been friends since high school. I have had so many fun memories with her over the past 15-years with cheering together, rooming together, getting our real estate license together and maintaining our "girls night and weekend" get-togethers. Gina is an amazing person and I feel so fortunate to have her as my friend!
HAPPY BIRTHDAY GINA!!!

Big vs. BIGGER!!!

1-week before Kate was born.....



.... Yup, still have 12 more weeks!

Okay.....so I have admit that this pregnancy has been pretty smooth (very little nausea, decent energy level, etc.). However.....I have had a GINORMOUS (sp?) appetite lately. And, it doesn't help that I have been eating out 2 out of 3 meals a day!!! So, that has weighed me down (literally). So, I decided to take a picture and compare it to when I was pregnant with Kate and see if I am as big as I feel. Well, that picture proved to be true. I took this picture last night and compared it to a picture I took at Kate's baby shower 1-week before I delivered. I try not to weigh myself during pregnancy (I don't even like to look at the scale at the Dr's office). But, after seeing this picture I was a little curious. Let's just say.....it's not pretty. I have already surpassed what I gained with Kate and I still have 3 MORE MONTHS to go. Many people warned me that the 2nd pregnancy is much different from the 1st and I'm starting to believe it!!! I have a feeling this is going to be one BIG baby girl!!!

Get Well Soon, Kate!!!

We feel so lucky to be surrounded by such amazing friends and neighbors. A couple of nights ago, we came home and to our surprise, we had an envelope full of these sweet "get well" cards from some of the kids in our ward. I was so touched by all these sweet messages. Through the many things we have experienced over the past 18-months, I have learned so many valuable life lessons. I've always felt that it is easier to be on the giving end of service, rather than the receiving. We have been shown many kind acts of service and I sometimes feel guilty for my inability to "re-pay" everyone back. However, I have seen how this has greatly blessed my life and hope that in the future, I can give back to others in need. A good friend of mine once said to me that the Lord gives us opportunities to serve others not only to bless the lives of those being served, but also to bless our own lives. So, by allowing others to serve us......it is allowing those serving to receive blessings.
Mr. Froggy is always a great pal to have around!
I love this picture of Kate

My Great Find!

Since spending so much time in the hospital, I have found myself doing a lot of on-line browsing. I happened to come across these sofa pillows at Restoration Hardware and fell in love with them. Actually, I think I was more in love with the price. Did I pay the original price of $39 per pillow??? Nope......instead I paid a whopping $4.99 for each pillow. You've gotta love a great steal!!!

The Royal Treatment

Not many people can say that they have an "Uncle Buck"

This has been such a great week. Kate was able to come off the vent on Tuesday and transition to CPAP. She has done so great. I think she is just happy to FINALLY get that tube out of her. For the first couple of days she was off the vent, she was just on straight CPAP. The last few days, she has been able to come off for a few hours on a high-flow nasal canula. She really likes the break. I had to laugh though.....I got to the hospital this morning and the queen was on her throne.......(aka Kate in a chair in her bed). It was the funniest thing I have ever seen! She is still pretty weak, so it's good for her to be able to change positions. She is so sweet and is such a little trooper. Here are a few things Kate loves:

*When mommy reads her favorite book, The Jester has lost his Jingle

*Having her chin tickled

*Being able to look at Mr. Froggy

*Giving high-fives to Steve, her respiratory therapist (with a little help from Steve)

*Blowing bubbles with her CPAP mask

Go Kate Go!!

Because Kate is so feisty, the tape holding the ET tube comes loose quite often so she has to have some "sleepy drugs" so they can re-tape it.

Thanks Aunt Jalene for the cute little doll!

Sundays are always nice here at the hospital. Not only is it nice and quiet, but we also have the opportunity to attend the hospital church services. Even though the meeting is just 1/2 hour long, the spirit is so strong.

So, we had the care conference on Thursday and things went really well. We discussed the option of a Tracheostomy as well as replacing Kate's pulmonary and tricuspid valves. While there are some benefits that could come from both of these operations, there are also many risks involved because of how weak she is right now. Bryan and I both feel that if we can get her off the ventilator and back to being on CPAP, she will be able to regain her strength so the heart surgery will be less of a risk. Kate's pulmonologist and cardiologist feel that if she were to have the Trach immediately, they would like her to remain in the hospital for 6-weeks to recover and then evaluate her heart to see if she would be ready for the procedure. This is a very fine line because we don't know 100% if the Trach will make a huge difference. Plus, being in the hospital for that long is not great for Kate's development. We've taken this medical advise into much consideration and with much fasting and praying, we both feel that if Kate can come off the ventilator and transition onto CPAP successfully, that we can take her home and allow her to gain strength and grow without having to have a Trach. There is the possibility, though, that she may not do as well as we hope, but she will definitely let us know. We feel that we at least need to give her one more shot. As we have come up with this plan, we have felt much support from all the doctors and medical staff....which we are very grateful for.

In the past couple of days, Kate has made some significant progress. We are working on getting her off the ventilator and it looks like she will be ready to come off it tomorrow (we're keeping our fingers crossed). Now she is off all her sedation meds she has been one FEISTY girl!!! That's one side of her we like to see :) We believe in miracles, as Kate has been a miracle in our lives. We love her so much and she is what keeps us going.

Finally an Update - Sorry :(

Everyone is always commenting on how they wish they could see Kate's personality when she is not sick and in the hospital, so I made this poster and included some of my favorite pictures of her.
One of our favorite nurses, Angie, loves to pamper Kate. This is the first time Kate has ever had her nails painted. I must say, she has some great nails (unlike her mom).

Someone has some "grumpy pants!"

Yes, I have been a "bad blogger" lately so I thought it's about time to post another blog. I feel like our world has stood still for the past couple of days (or should I say weeks). We can't seem to figure out what is going on with Kate. Last Wednesday when she went down to the Cath Lab to get a more accurate view of the pressures in her lungs and heart, the results showed that Kate really doesn't have Pulmonary Hypertension (which they originally thought she did). So, medication really won't help the problem. They also found that Kate's heart hasn't significantly changed since her last Echo cardiogram back in October (which is great news that the function has not digressed). But, we still can't seem to figure out what is causing all of these issues. A team of doctors and specialists are having a conference tomorrow morning to discuss Kate's situation and see if they can come up with a plan for her. We have kinda been at a stand still this past week waiting for them to collaborate. We have a meeting set up for Thursday to discuss their feelings and make a decision for what will best benefit Kate. As I have mentioned before, she is still too small to go in and have her pulmonary valve replaced, so a surgery at this point is pretty much out of the question. Plus, they don't think that fixing the valve would make much of a change for her heart at this point.

It has been extremely frustrating for us because Kate is a unique little baby with a unique condition that no one can seem to figure out. However, she seems to keep fighting her way through all of these obstacles. One option they have presented to us is a Tracheostomy. We crossed this bridge back in August and felt like a Trach wasn't necessary for her to in improve her breathing issues and Kate proved that to be true. This option has come up again and we are still not 100% convinced that this is what she needs. We feel that the best medicine for her would be to get her out of the hospital and back home so she can re-gain her energy level and continue to grow. The bottom line is that no one knows indefinitely what is the best option. So, we are holding out until Thursday when we have all our options out on the table and then will hopefully be able to make an educated decision to help Kate's future care.

One CRAZY Christmas!

Where do I even begin?? Well, we got our Christmas wish and Kate was able to come home before Christmas. She was released on Sunday and we were so excited to have her home. She was doing really well and we felt confident that we could get her home and back to a normal routine. So, we brought her home Sunday afternoon, put some lights on the tree and wrapped a few presents and we felt we were all ready for the big day. We were a little worried because Kate seemed so lethargic and had no energy at all. When we put her on the CPAP Sunday night, she had a really hard time keeping her oxygen levels up. After manipulating with the dumb machine most the night, we finally got her sats stable and were able to get a few hours of sleep.

On Monday, she still didn't seem herself and had the same problems. However, she seemed much more congested and was coughing quite a bit. My family came up to our house on Christmas Eve and we had a nice dinner. With the crazy snowstorm we had, my brother Jeff and nephew ran off the road on the Alpine highway and got stuck (seriously stuck). So, the majority of the night was spent trying to get him unstuck. I always joke with my family that life for the Roper's wouldn't be normal without some type of fiasco : )

Kate seemed to be getting sicker and sicker as the night went on. We were up again all night, mainly worrying if she was getting the oxygen she needed. Christmas morning wasn't any better. Bryan's family came over that morning and his dad and brother, John, helped give her a blessing. Both Bryan and I felt that we needed to get her back up to the hospital as soon as we possibly could, as she was on the highest flow of oxygen and still not getting enough. So, we packed things up and drove back up to Primary's. We feel so grateful we took her in when we did because after having a chest x-ray, Kate's lungs were totally filled up with fluid. I think she was well enough for us to take her home on Sunday, but she just didn't have a big enough reserve to stabilize her on our home equipment.

Anyway, she is doing much better today. She had a CT scan of her heart on Thursday, showing that her pulmonary artery isn't as narrow as they thought it was. She also has significant pulmonary hypertension, which is high pressure in her lungs preventing the blood from flowing into the lungs from the heart. This has been a problem because not only is she not getting blood into her lungs, but it is causing her heart to enlarge. It is exacerbated by her leaking tricuspid valve. Prior to the CT scan, her cardiologist felt that going in and putting a stint in the arteries would help the flow of blood to her lungs. However, this won't fix the underlying problem of pulmonary hypertension and that her tricuspid valve is insufficient and allows blood to regurgitate back into the heart. The good news is they think that certain medication (Viagra) should help dilate the blood vessels in her lungs allowing blood to move more easily. By doing this, it should get her to a point to where she is big and strong enough to have her valve replaced. I have learned more about the human heart in the past year than I had ever wanted to know. We fell like we are FINALLY getting down to the real problem. In the past, we've always attributed her breathing issues to her airway, but now we feel that it's her heart that is causing these issues. Kate is scheduled to go down to the Cath Lab on Wednesday to determine the pressures in her lungs. From there the doctors will collaborate and come up with a plan.

I know this is one LONG blog entry.....I guess that's what I get for not keeping it updated :) We hope you all have a Happy New Year!!

It's Beginning to Look A lot Like Christmas!!!

I can't believe that Christmas is almost here. It seems like this holiday season has flown right by. I have LOVED all the snow we've been getting....there's nothing better than a white Christmas.

We have been really hoping that Kate will be home from the hospital before Christmas, and it might just happen. She was able to come off the ventilator on Thursday and has made significant improvements since then. After coming off the vent, she was put on CPAP and stayed on that all day yesterday. Today, she was put on a regular nasal cannula and has really held her own. This is a good sign that her lungs are starting to heal. The greatest part of being off the vent is that we can actually hold her. I have to say that not holding Kate has been the hardest thing, but it was such a sweet reward to be able to finally hold and comfort her today. So, at this point we are still crossing our fingers that we can get her home in the next couple of days.