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.

Mommy's Girl!

Yesterday was the first day in 3 1/2 weeks I was able to hold Kate. I was definitely ready for it. It's still a little hard trying to juggle all of the equipment, but we did it. We've found that she likes to be held up rather than cradled. She is such a sweet girl.

Kate is still doing well on the BiPAP. However, she is having a hard time blowing off her CO2, which is causing her to require more positive pressure. At this point, she hasn't really shown a significant change in coming closer to breathing on her own. We've decided to schedule the Tracheostomy surgery for Monday. However, we haven't lost hope that in the next couple of days, she could turn a corner and therefore, not have to go through with the surgery. One great thing is now that she is off all of the narcotics, she is so active and back to the old Kate.

Kate is G-R-E-A-T!!!!

Kate is rocking this BiPAP. She has done really well on it. She's slowly going down on her settings. Because it generally takes Kate a little longer to heal, we're giving her about a week on the BiPAP to see if she can get stronger. We're hoping that she can get to a point where she can go home on it and just require it a couple times a day and maybe at night. We're still unsure if her Trachea can heal that fast.....so a Tracheostomy is still an option. But, she's proven that she can overcome things.......just on her own time. So for now, she will be here a couple more days. We are really anxious for Kate to come home. Bryan is most anxious to start taking her to football games.......GO COUGARS!!!

Before and After....

Hopefully, this is the last of the ventilator.....
.....but is this any better :)

Well, it seems that Kate has turned a corner. She did really well this morning and continued to progress throughout the afternoon. After consulting with Dr. Larsen, we decided to go for it and try and extubate her. Bryan and I felt really good about it. We mainly wanted to give her a fair shot to see if she could handle it on her own, knowing there's a chance that they may have to re-intubate her. But so far, she has done really well. I don't know if she thinks it's the greatest thing to have a extra "schnozz" (the BIPAP mask), but it beats having a tube down her throat! As she gets used to it, we'll turn her settings down. This is what she will most likely come home with, but she may not require it all the time, which would be so great for her. We just pray that the BIPAP will be enough to keep her Trachea open until it strengthens on its own.

B-I-N-G-O

Every week, the older kids in the PICU get to play BINGO. The great thing about BINGO here is that everyone is a winner......even if they don't show up! So, Kate's prize was this cute little dog. Since Kate isn't able to play BINGO, I've been teaching her the BINGO song. It's become one of our favorites.

We had hoped that Kate would be extubated this weekend, but she has gotten some kind of sickness. They thought it might be pneumonia, but a chest x-ray proved that to not be the case...whew! I swear, if it's not one thing....it's another. So, it's still a waiting game. She's feeling much better today, though. So it's just a matter of Kate being able to heal on her own.

Day 18.....

This has definitely been a long road for us the last couple of weeks. Kate had a spontaneous trial off her vent last night and didn't do very well. So, we're going to give her a couple more days and see how she does before considering taking her off the vent completely. She has let us know that she is doing things on "Kate's Time." So, we just need to be patient. She has slept most of the day, except for long enough to blow out her diaper (literally BLOW out). It's great though that she is getting good rest and not fighting the tubes. She has seemed to heal really well from her surgery and is doing great with her feedings, with no sign of reflux....yay! We think this will really help her.

Kate's New Tricks...

Kate has learned some new tricks since being in the hospital. So, she does this thing where she starts to cry and then the next second she totally stops and then looks at Bryan and I to see if we are watching and then goes back to crying. It's the funniest thing. Also, she started learning how to blow bubbles out her nose! Yes.....we Rosenvall's sure are talented :) I'm sure
Kate is going to love these pictures when she's older.

Not much has changed since yesterday. Obviously, they didn't try to take her off the vent today. We want to make sure that she is ready, so it might be tomorrow or the next, or the next.....we're not sure. She is doing really well though. Her coloring looks great and her sats are stying high, so that's always a good sign. We're keeping our fingers crossed.

"I think I will throw a fit......
".......is anyone watching me?"

"Yes.....that is a bubble coming from my nose!"

Day 14......Signs of improvement!

Kate seems to be making progress more and more each day. She is definitely feeling much better. Whatever "happy juice" they gave her while in surgery sure did the trick : ) Ever since she has come out of surgery, she has been more alert, has had better oxygen sats and just looks better. We've been able to slowly turn down her oxygen settings and the plan is , as of today.......is to hopefully extabate her off the ventilator tomorrow. We're very optimistic, however, we've learned from being here so long that we try not to get our hopes up. But, Kate is moving in the right direction. If everything goes well, she may be able to come home sometime this week. That would be ideal!

Kate's nurses seem to be drawn to her hair. Kate always has a new hairdo when we get to the hospital in the mornings. Today is "piggy tail" day : )

Yay for Daddy!

After 2 long years of going to school and working full-time, this day has been much anticipated. Bryan graduated this morning with his MBA from BYU.....yay! Even though Kate and I were not able to make it, we are glad that he was able to be honored. When Kate was first born, Bryan was just getting ready to start his 2nd year and we debated whether or not he should defer it for another year, but he chose to persevere. Even though this past year has been very challenging, we are so grateful that he was able to finish. I have to say that I am so proud of Bryan and all that he has accomplished. I am truly lucky to have such a fabulous husband!! So what's the plan now that he is finished.......that's the million dollar question : )

All-in-all, today was a very good day. Kate had her surgery this morning and everything went really well. In fact, after coming out of the anesthesia, she was wide awake and wanting to play. We've also been able to turn down her oxygen, which is a big step. So, where do we go from here?? Well, we are going to start giving Kate spontaneous trials off her vent, which means that Kate will do all the breathing while the tube is still in. This is going to be the biggest challenge because of her weak trachea which narrows near her lungs. However, Dr. Downey is very optimistic that if she is no longer refluxing, that her trachea will strengthen. We're not sure how long this is going to take, so we just have to be patient. At the end of the day, we are feeling very blessed!

Day 11....

Things are definitely starting to move in the right direction. We had a chance to speak with Dr. Downey this morning and he would like to move forward with the Nissen and G-Tube surgery. Much to our surprise, Kate is scheduled to go in at 7:30 am tomorrow morning. This is such a blessing. It just so happens that Bryan's graduation is tomorrow at 8:00 am. We didn't think that it would be this soon that she could get in, so we had just planned for Bryan to go to graduation. He has worked so hard these last two years and I would feel so bad if he wasn't honored, so he's going to go ahead and walk. My mom is coming up tomorrow and will be with me while Kate is in surgery. The procedure should only take about 2 hours, as she is having it done laproscopy instead of open chest. This is less invasive and the healing time is much quicker. We will definitely keep you all posted on how everything goes.

Day 10......

Today was a much better day!
Kate loves her Daddy!
Our neice, Drew, drew this picture and wanted it hung so Kate can look at it while she was in her hospital be. We thought it was so cute that we had to take a picture of it.

A little bit of news sure goes a long way. We got a call at midnight last night telling us that Kate has been scheduled for her Bronchoscopy at 7:30 am this morning. We were pleasantly surprised that she was scheduled so early. So, Bryan got up this morning and drove to the hospital to be there with her, while I waited for my Mom to come up. The test went really quick and the results came back better than expected. However, they found that most of the Tracheomalicia has been caused by her reflux. This is good news and bad news at the same time. The plan is to fix her reflux problem (by a Nissen & G-Tube) and see if her airway will improve before making any decisions about a Trach. We feel much better about this decision. We still need to consult with Dr. Downey (who will be performing the surgeries) and get an idea of when she will be able to have these done. From the look of things, it may not be until sometime next week. The hard thing is that we would have to keep her on the vent until her surgery. By doing so, it can be extremely harsh on her throat causing a lot of inflammation. It has been a much better day considering we have more of a plan of action.

Kate seems to be in much better spirits. She has actually been awake much more today and is less irritated. This has been nice because she has been able to play with her toys and actually get some stimulation. We are more hopeful about things and are looking forward to getting her better and home with us.

Day 8 and Day 9 - More Hospital Time :(

Well, this post might read a little different as Marcae isn't writing it, but I guess I will do. The last two days have been very frustrating for us because there has been no real change with our little Kate. She continues to be on the vent and the hospital has been so busy with scheduled and emergency operations that they have not been able to fit her in for another Bronchoscopy with a hard scope. We hope this will tell us what the next step in Kate's care will be. While Kate is in this holding pattern she doesn't seem to be getting better but the nurses try to keep her as comfortable as possible.

Basically, we are faced with the decision whether or not to perform 3 different surgeries because of recent problems Kate has had. 1 - A Tracheotomy 2 - A Nissen and 3- A G -tube. The last 2 go together as they both have to do with correcting her reflux, allowing her to be fed without risking her aspirating or damaging her lungs any further. These surgeries have become necessary because the doctors feel that she has Pulmonary Hypertension, which causes her heart to pump harder in order get blood into the lungs to get oxygenated, which then causes her heart to get bigger because it is working harder.

With the heart getting bigger in Kate's little chest it seems to be compromising and compressing on her airway now. Which is the reason for the first surgery, the Tracheotomy (trach). This is all very frustrating for us because all the problems seem to be interrelated and knowing what this could mean for how much time she might spend in the hospital really isn't exciting for us to realize, in fact it is very discouraging. But we continue to see how Kate fights to get better and it gives us hope for the time when we can bring her home again.

The plan for tomorrow is to squeeze her into the operating room's busy schedule to take a look at her trachea so we can decide what she needs first. Hopefully this will happen tomorrow so that we can get things scheduled and allow Kate to heal so that we can get her home as quickly as possible. We really appreciate and are thankful for every one's thoughts and prayers for our little family. I hope you all know that we feel them boost our spirits in times of trial. We continue to hope and pray for the time when we can have Kate home without any medical equipment and be able to just enjoy her.

Day 7...

The days at the hospital can be very long and draining, especially because we can't do much. Today we had the opportunity to attend Sacrament Meeting here. Wow!! What an amazing experience. The meeting is just 1/2 hour long with the passing of the Sacrament, a musical number and a short speaker. The Spirit is so strong. It really puts things into perspective that you don't have to look very far to see the many trials that people face and how lucky we are with the trials we do have. I am amazed at some of these other families who have much more challenging trials. It strengthens my testimony to see the faith and long suffering of these families.

Kate seems to be about the same. She is so FEISTY!!! In fact, every doctor and nurse makes jokes about not interrupting "Kate Time." She's knows what she likes and what she doesn't like.....and she lets you know when she is bugged : ) She Seems to be able to rest for the most part, but gets really irritated with the vent. We're not sure what the plan is for the week, but we think she may be going in for another Bronchoscopy tomorrow. This is a more advanced test than she had before. She will actually have it done in the operating room because she has to be put out for it. We're hoping to find from the Bronchoscopy, the size and scope of her Trachea. This will determine if they can operate on her Trachea by opening it up so she can breath better. If it's not feasible to operate, then we will have to resort to a Traech. At this point, we are just looking for an alternative.

My family came up to visit today and my Dad and Bryan gave Kate a very special blessing. The Priesthood is real and I believe that if we have faith, that it can bless our lives. I've seen this happen many times in my life and I am so grateful for it.

Day 6....

Kate had a little better day today. However, we got a call from her nurse at 2:30 am this morning telling us that Kate was having a hard time keeping her sats up being on CPAP. In fact, Kate was on the highest level of oxygen and still not making any progress, so we had to re-intabate her and put her back on the ventilator. This is very discouraging to us because it is so invasive to take her off the vent and put her back on it. Plus, it irritates her throat so much which causes her to gag and choke. It's very hard to watch her go though this. The hardest thing is not being able to hold her and comfort her. This is perhaps the most trying thing that we have ever had to endure. We're hoping that by surgically fixing her airway obstruction, that all the other things will correct themselves. It's just something we are going to have to wait and see. Weekends are pretty uneventful, as most doctors and specialists are off for the weekend. So, it looks like things should start rolling on Monday.

John and Michelle & the kids came and spent some time with us today. John and Bryan gave Kate a beautiful blessing. We have definitely felt that hand of the Lord through this experience. We are so grateful we have the Gospel and the comfort it brings to us.

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 : )