Day 5....

Who says you can't look your best while in the hospital??

I got the curlers in her hair and then she was taken off the vent and back on CPAP, so there goes her curls.

Well, we ended up consulting with Kate's doctors this morning. They brought to us the harsh reality of Kate's condition, which in some respects is good, and in other respects is quite difficult to hear as parents. We found the most serious problem she is facing is a condition called Tracheomalacia (which is a very weak or soft Trachea). This is making it very hard for Kate to breath, which in turn may be increasing her heart size and function, as well as contributing to her Pulmonary Hypertension. According to the PH probe results, it shows Kate has significant reflux as well. There are a few options available to fix both problems, which would require a few different surgeries. This has been an extremely difficult decision for us to make, as we know how long it takes Kate to recover from surgery. We met with an ENT tonight who would like to do another Bronchoscopy to get a more detailed study. We're hoping that this will be conducted this weekend, so a decision can be made and we can schedule surgery.

Kate is doing really well and had a pretty good day. We decided to take her off the vent and back on CPAP. Since she was on it for 3 days, it caused a lot of irritation and swelling in her throat, so she has been pretty grumpy. However, she has done really well and is so glad to have that thing out of her throat.

It looks like Kate will be spending a few more weeks in the hospital, depending on when her surgeries are scheduled and how long it takes her to recover. Again, we appreciate all of your prayers and ask that you continue to pray for Kate.

Day 4....

Today was pretty uneventful.....so that means it was a good day. We got the results back from the PH probe test, but the Pulmonologist hasn't had a chance to read them and interpret them for us, so we'll find out tomorrow. From what it looks like, she is not refluxing as severely as we thought. But, we'll have to wait and see. There's also a chance that she may be able to come off the ventilator tomorrow. Yay!!! She will be one happy girl.....that's for sure. We have our meeting tomorrow at 8:15 am. Bryan and I have spent a lot of time researching her heart condition and have come up with a list of questions that we'll hopefully be able to get answered. The frustrating thing is that there are so many doctors involved in Kate's care that we get a lot of differing opinions. So having all of us together in one room will be very beneficial.

Kate continues to be the sweet, happy, patient girl she has always been. I can't even imagine what she must be thinking....especially with all of the tubes she has and having her hands restrained from trying to pull them out. It's a good thing that she won't remember any of this.

"Will someone please do something with my hair??"

I'm sure it gets pretty boring just staring at the ceiling all day, so we were able to utilize the overhead light by hanging her favorite doll from it. She gets so excited that it puts her right to sleep :)

Day 3....

Kate is not happy about being on the ventilator. The second her hands are free, they immediately go straight for the tubes. She knows all the naughty tricks : )
As you can see from the top picture, Kate really isn't taking well to being on the Vent. In fact, we are pretty sure that she HATES it. Today, they had to up her sedation again so she wouldn't fight the ventilator as much as she has. The problem is she has to come off sedation to come off the vent so it is a catch 22. We talked with a couple of doctors today and they didn't have the best news for Kate. They think that her Trachea might not be developed enough to support her growth which is why it is collapsing or closing. They have several options to help her maintain a competent airway. We will be discussing her on-going care in a conference Friday morning with a bunch of Kate's doctors. It will be good for us to get them all in one place at one time so we can get all our questions and concerns addressed and try to make an educated and informed decision about how best to address Kate's on-going health problems moving forward.
This new development with Kate could be because of her enlarged heart pushing her other organs and tissue out of the way, crunching her trachea in the process. Or it could be because her trachea is naturally weaker and underdeveloped. So there are many possibilities and it becomes very frustrating for us to make decisions about what is best for her care.

We remain optimistic about Kate's future. We continue to have faith that Heavenly Father has a plan for our little girl, and we continue to try and align with that plan. We are definitely learning patience and humility, and most of what we can do for Kate involves praying and being by her side. We are continually grateful for the health care facilities we have access to and are privileged to be able to take Kate to. The doctors and nurses have been so wonderful. However, we would much rather have her home with us : )

Day 2...

Today has been an eventful day. Last night Kate was put on the ventilator and a PICC line was placed. Today, she had an MRI on both her brain and heart. She had to be completely sedated for this, so she has been a sleepy girl. The reports are in, but we haven't had a chance to talk to the Neurologist and Cardiologist to get the full report. So far, we don't know what is causing Kate's trachea to collapse. We had hoped that the MRI would show this conclusively, but it didn't. Preliminary findings for the MRI stated that the heart is not significantly precluding the airway. But, not all the doctors have had a chance to review the study.

Now, we sit and wait until the doctors come up with a plan of action to open her airway. The good news is that Neurology doesn't seem to think that there will be any further follow-ups for Kate in the future, as the preliminary CT scan and MRI didn't show any significant brain abnormalities. So where does that leave us???? That is the big question. Kate seems to want to keep us guessing.

The PH probe test is tentatively scheduled for tomorrow and we're hoping to get her off the vent in the morning. We're still not sure when she will be able to come home, but we hope we can get to the bottom of this so we can get her off oxygen.

We are so grateful for all of your calls, e-mails, prayers and support.

Not another hospital visit!!!

The last couple of days have been really stressful for us. Kate was admitted to Primary's yesterday afternoon after she stopped breathing a couple times and required CPR to bring her back. This happened about 3 times before taking her up to the hospital. She ended up having about 7 apnea spells yesterday. Through many numerous tests, they have found that she is having seizures. The probable cause is unknown but they are coming from her left frontal lobe of her brain. The seizure causes her to stop breathing and turn blue, which isn't very fun. But the positive thing is she isn't convulsing.

They have found that she has been having difficulty breathing because her heart, post surgery, has become so enlarged that it is pushing and closing her airway into her lungs. Her airway is almost 80% closed because of this. So, lack of oxygen and the stress that it causes to have her airway blocked could be causing her to go into these seizures. But, that is unknown of course. She has a few other tests scheduled this week and they might have to place a catheter up into her heart to check the function and actually look at the repair, trying to find out why her right atrium has become so enlarged. They told us that the right atrium is the size of all 3 other chambers combined. Right now, they have her on a medication to alleviate the fluid and pressure off her heart. We are hoping this will make a difference.

We are very optimistic that things will work themselves out....Kate is definitely a little fighter. We have seen so many miracles in our lives and know that there are many more to come. Please keep Kate in your prayers.

Kate had to be put on a C-PAP machine to help her breathe. She also had an EEG test to monitor her brain activity (hence the stylish turban.... :)

Kate has the best Daddy in the world!

Kate absolutely adores her dad! Tonight Kate and Bryan had "Daddy Daughter Night" while I went to a wedding with my mom. Bryan's idea of "Daddy Daughter Night" consists of hanging out at Home Depot. When I got home, I had to laugh at the outfit Byran put her in. Not only is it totally mismatched, but her shirt is on backwards.......bless his heart! Kate is definitely a little Daddy's girl! I have to say that Kate and I lucked out! We love you : )

Not just a tooth......A MOLAR!!!

Okay, so Kate has been teething and has been really fussy, hasn't wanted to eat and has had some pretty funky sleeping patterns the last couple of days. We noticed that she has a bud on her lower gum. One thing she really likes is when I massage her gums with my finger. Well, I was doing just that today and massaging her gums when I came across a sharp object in the back of her mouth. Sure enough it's a tooth that has broke the surface. I'm assuming it's a molar. No wonder why she has been grumpy. From what I understand, it's not very common to get molars before incisors......just little surprises around every corner for the Rosenvall's!

Bryan didn't believe me when I told him, so we had to wait until she was asleep to get a good look. It's a little hard to see it in this picture.

Oh....The fun of Summer!!!

I've hesitated taking Kate swimming because I was afraid she wouldn't like the water, but she actually LOVES it! We had a play date at the Lehi Legacy Center on Monday with Gina and the boys and Kenz and Rylee & Colby. We had a lot of fun!

Happy Pioneer Day!!Our neighborhood has a fun tradition every 24th of July. We BBQ and have a big firework show in the middle of the Cul-de-Sac. Greg & Holly made a trip to Wendover this year and brought back some "real" fireworks. Luckily, no cops showed up this year!

Last year, Kate was still in the hospital for the 24th of July. It was a much better celebration this year than last. She loves watching the fireworks!

Boys will be Boys!!

We're so glad that Daddy is home!!

Kate and I spent this past week in Fillmore while Bryan was in Canada for work. He left on Tuesday morning and was supposed to fly home Friday evening, but his flight got cancelled due to bad weather and wasn't able to fly home until Saturday afternoon. I was a little bummed but, we had a great time visiting Grandma & Grandpa Roper. I tease Bryan that we need to move to Fillmore because every time we are down there, Kate's oxygen levels seem to really improve. Bryan just thinks that it is an excuse to get him to move down there : )

Saturday night we decided to go to the Utah County Fair at Thanksgiving Point. Neither of us have ever been, so we thought it would be fun to check it out. Later that night, we decided to go to a movie for the first time with Kate. Bryan begged to go see Hairspray..... : ) Kate did really well and the movie was a riot. I would go see it again and again.

Kate loves this little puppet she got for her birthday. It's so funny to see how excited she gets over it.
All tuckered out from being at the Fair!
This is Kate's favorite pastime.....what we like to call "Kate Time." She's getting to a point where she likes to be independent and doesn't like being held. She could entertain herself for hours.

Kate's 1st Birthday Party!

Click to play | Make your own Smilebox

Click to play | Make your own Smilebox

Birthday Girl!

Today is Kate's 1st birthday. It's hard to believe that 1-year has come and gone so fast. We have been so blessed and have so much to be grateful for. We had a party/BBQ last night and had so much fun. Grandpa Roper brought up his cotton candy and snow cone machines which were a BIG hit. It was quite a celebration. We had lots of friends and family that were there to help celebrate. We haven't done much to celebrate today because Kate is EXHAUSTED from all the excitement yesterday.

We just want to thank all of our fabulous family and friends for their love, support and genrosity they have shown our little family. We love you guys!!

No Tests today!

Kate was scheduled for a Bronchoscopy and a PH probe today. However, she has to be off her reflux medication for 3 days prior to the procedure and we slipped up this morning and gave her Prevacid....Ooops! It's funny how we get into such a day to day routine. We're a little discouraged, though, because we can't get Kate into have these tests done until August 9th.

"Will someone PLEASE get me out of this chair??"

I tried a new hairstyle on Kate.....I think we'll just stick to the curls!!!

Bryan and I had the opportunity to go to the Temple on Tuesday night. My friend Holly came and watched Kate while we were gone and brought her darling baby Max. Once again.....Kate can't seem to keep her hands off the boys : )

Early Birthday

Today, we celebrated Kate's birthday a week early because Grandma & Grandpa Rosenvall are going to be in Florida for her birthday next week. We had yummy raspberry cake that grandma made from her garden raspberries. Kate sure liked the whipped cream.....yummy!
My favorite Sunday activity is taking "Sunday Drives." Today, we drove part of the Alpine loop, but took a detour into Heber City. It was absolutely beautiful. The temperature was a mild 81 degrees. We only ran into one problem.....we hit a pretty big rock that punctured one of the tires. We were lucky enough to make it into Midway before it deflated completely.
Tomorrow is our 3-year anniversary.....yes, hard to believe. We decided to celebrate early and go eat at one of many of our favorite restaurants....P.F. Chang's. Kate's just trying to help Dad decide what to order.

Fun on the 4th of July!

Ya gotta love the Fillmore 4th of July celebration.

Our good friends Treo & Nolan watching the parade!
Just hanging out in the park!
Kate's a little flirt......especially with the younger boys :)
We were a little nervous how Kate would do watching the fireworks, but we think she really liked it!
Too much fun for one day!

Party Time!

Yesterday, Great Grandma and Grandpa Rich celebrated their 70th.....yes 70th wedding anniversary. We had a big party at Uncle Ed & Marissa's home. It was a lot of fun to see everyone.

Somebody woke up on the wrong side of the bed!

Kate woke up Friday morning with some serious Bed Head. I don't think she really liked the fact that Bryan and I were laughing at her and taking pictures. It was pretty comical!

She is doing so much better now. We saw the Pulmonologist on Tuesday and she scheduled Kate for a PH probe test. Basically, it's a 24-hour test where they use a probe to monitor Kate's gastrointestinal activity. The doctor thinks Kate is having significant silent reflux, which is preventing her lungs from healing. So, this test will be able to see when she refluxes, how much, how often and if it's going into her lungs. It also tests the acid levels Anyway, she is having that test on July 12th up at Primary's. If the test finds that she is indeed refluxing that much, the alternative is to have a GJ tube (which is a feeding tube surgical inserted into her abdomen) placed until she is strong enough and can outgrow the reflux. We are pretty optimistic about things and just hope we can find a solution to getting Kate off oxygen.

Kate's way of getting out of church!

Kate gave us a big scare today. We were at church, just getting out of Sacrament meeting and Kate started acting really funny (kind of like she needed to throw up). She started losing her color really quick and noticed she wasn't breathing. Bryan rushed her out and started CPR when Kate finally came out of it. In the meantime, someone had called 911 and the paramedics showed up. Even though she was breathing again, she had gone into shock. I rode in the ambulance and Bryan followed in the car to American Fork Hospital. After several tests, everything seemed to be pretty normal. We noticed Kate getting sick shortly after Bryan returned from South America and think that he must have brought back some kind of sickness, but Kate seemed to be feeling much better. The doctor thinks that she somehow had excessive mucus she was trying to get out and it blocked her airway causing her to pass out. We are so thankful that it wasn't a seizure or anything more serious.

Kate was only in the hospital for a few hours and is home now and doing great. In fact, her pediatrician was called in and he thought that she looked better than ever, so we're hoping whatever it was is gone now. Kate is always keeping us on our toes, and amazes us how resilient she is. We told her that it was a pretty extreme way to try and get out of church.....and that next time, she can just throw a tantrum or blowout her diaper when she wants to go home from church : ) Even though this was a very scary time, we feel so blessed that everything turned out okay.

It's the first day of Summer....Wahoo!

It never fails......Kate seems to always fall asleep when it's "tummy time."
Hanging out with Dad on Father's Day!
Drew has been staying with us this week while Greg & SuSan are in Cali. We've had so much fun. Drew wanted to get a picture with both babies (Taybree is her baby).
It's amazing how some cellophane can be so entertaining!!!

I've slacked a little the last couple of weeks with keeping up with Kate's blog. Things have been a little crazy around here, but we're getting back to normal now so I'll be better about keeping up. Bryan brought a cold back from South America and both Kate and I got it. I feel much better now, but Kate's still trying to get over it.

Bryan had a fabulous Father's Day. We spent the evening with his family and had a great time. He was mostly excited about his Father's Day gift.....a "Little Giant" ladder. He was was so intrigued by all the different things he could do with it(there's only so much you can do with a ladder....right??). Anyway, it was a great first Father's day for him.

Kate is really starting to show some "attitude." She used to be very content through all 3 church meetings, but lately she's been acting up and we've been having to take her home. Also, she's learned how to bat at her bottle and knock it out of our hands.......when she's done eating......she's DONE!

Other than that, things are great for our family. Our basement is almost finished...YAY, so it'll be really nice to have that done.

We're Home!!!!

Kate and I have been staying with Grandma and Grandpa Roper for the past 2 1/2 weeks while Bryan was in South America. We had such a great time in Fillmore, but it is nice to be back. I was worried how Kate was going to adjust to a new environment, but she did great. We only had a few mishaps. The first couple of days we were there, Kate's oxygen levels and heart rate seemed to drop below normal levels. It made me a little concerned that it had something to do with her heart, so I ended up bringing her up to American Fork for some tests. After an EKG and a chest x-ray, it showed that Kate had a little pneumonia.......great! So, she was put on Amoxicillin. We were also sent a holter test to monitor Kate's heart for 24-hours. We don't have the results back from the test, but her congestion is gone she seems to be feeling much better. She's doing so well with her feedings. She is now over 16 lbs. We've started to ween her off breast milk (yes.....all that pumping has paid off) and are just giving her straight formula, which she really likes. Oh....she is also soooo close to sucking her thumb. It's so funny watching her try and keep her thumb in her mouth.

It's so nice having Bryan home. It was quite a trip for him, but he had a great time. They visited many countries including Brazil, Argentina and Peru. All in all, they took 17 different flights. He was definitely jet-lagged by the time he got home. This trip was a foreign business excursion he took with his MBA group. He has 1 more class, which will end on June 28 and will graduate in August. We are so glad to finally (almost) have him DONE!!! I have to say, it's not been the easiest thing having him in school and working full-time, but it has definitely been worth it. I have included some of the pictures from his trip. Also, he brought Kate back some fun things including this Inca doll.

Proudly showing off her new Inca doll!

Ancient Temple near Cusco, Peru
Machu Picchu, Peru

Christus Statue - Rio de Janeiro, Brazil
LDS Temple-San Paulo, Brazil
Iguazu Falls - Argentina
Some locals on the hills of Cusco, Peru
Making friends with the llama!! What a natural!!!!

Our First Real Family Photo!

We had family pictures taken this weekend. Other than some candid snapshots, we really haven't had a real family picture taken. Kate is always interested in other things than looking at the camera. What can we say......we tried : ) Rosenvall's May 2007
Not a big fan of kisses from Mom & Dad!!!