We're Home!

Today was a much awaited day. After 17 days in the hospital, Kate came home. She was released from the hospital around 1:00 today. We are so excited to have her home. It is so nice not having her on a continuous feed. We can actually walk around the house with her and not be confined to one area of the house. She is still on oxygen and will be on 1/4 of a liter until she has her follow-up appointment on February 14th. She will have a EKG and a chest x-ray that day and will see her cardiologist. Kate is still quite weak, but with time and a little work she will be back to herself in no time. She is still eating really well. It's amazing to see the changes from before her surgery. Kate would only eat about 1 oz. within 1/2 hour. She is now taking 3 oz. in less than 1/2 hour. We are so proud of her. Even though the last couple of weeks have been very tough and a test of our patience, it has been worth it and we are grateful so for this little miracle.

Closer to coming HOME!!!

Kate continues to progress more and more each day. The last couple of days have been great. She has weened off almost every medication that she was on and continues to use less and less supplemental oxygen to keep her oxygen saturation where the doctors want it. Marcae and the nurses have been feeding Kate from a bottle the last few days as well. She is already taking as much from the bottle as she was before her surgery. Another great thing that has happened is as the doctors watched how much Kate was able to handle from the bottle they decide to pull her feeding from her intestines back to her stomach (NG tube). This is great news for us because it shows that Kate is growing out of her reflux and might be able to come off the reflux medicine soon.

Today was a great day because Kate was transfered from the ICU to the recovery floor. It looks like she is closer to coming home. We're not sure how long she is going to be here, but we're hoping that she'll be released sometime this weekend.

Now there's a SMILE!

It amazes us how quickly Kate has recovered, especially since she was taken off the vent. She has done so well. She is a much happier girl! Today was an especially good day because it was the first day that I was able to hold Kate. There is nothing that I missed most than being able to hold her and give her hugs and kisses. It definitely made my day. It's so funny because she felt like a ton of bricks : ) She is now up to full feedings and is off all of her medications, except the medications for her acid reflux. She has 1 ART line, 1 IV and she still has the Pace lines (she is not being paced currently, but they want to leave them in until she goes home). We are also trying to ween her off the oxygen, which she is doing really well. The doctors think that she may be able to leave the ICU in a day or so if she continues to do as well as she has. It's so fun to have her recognize us and interact with us. We've really missed that, as she was sedated for about 1 1/2 weeks. We are so grateful for how well she has done. It hasn't been easy, but in the end it has definitely been worth it.

A Couple of Great Days

It has been a couple of days since we last posted anything. Since then Kate has been busy getting well very quickly. Saturday brought some great improvement as they took Kate off of both meds that were helping her blood pressure. She did great!! Then they tried a spontaneous breathing trial where they shut off the ventilator for a period of time. This tests to see how she can do breathing on her own, as well as test her blood bases and see what they are after the trial. She passed with flying colors and was that much closer to getting off the ventilator. This was welcome improvement after waiting a week with very little change.

Sunday morning we did another trial and she passed again, so the doctors felt it was time to remove the ventilation support. This was a rough period when they actually removed the ventilation. After 10 days of being on the vent, Kate's airway was inflamed, swollen and didn't react great to having the tube pulled out. She was coughing, choking and throwing up. This went on for about 4 hours while trying to console her and calm her down. We tried giving her sugar water on a Binky....what a brilliant idea :) She took to it and seemed to soothe her throat and she started to calm down and relax again. She was wide awake, which is the most she has been awake since the surgery. In fact, she stayed up the entire night for the nurse. They finally had to gave her a sedative in the morning to get her to sleep. It's amazing how much Kate has changed in looks since her vent was taken out. She's looking more and more like herself.

Today has brought more good news. They removed Kate from the pace maker early in the morning and she hasn't gone back on it all day with great success. Her heart seems to be getting back on track. They still have the lines in her for the pace maker and she still has a few meds helping her heart function better and easier. Unfortunately she can't leave the ICU just yet, but she is much closer than she was Friday. It is amazing what a couple of days will do for healing.

Getting Better!!!

Well, it seems like we might have finally turned a corner. Though Kate is still on the ventilator and a bunch of meds, the last 24-hours brought improvement in many areas. She has finally been able to wake up a little and look at us, though she still fights the ventilator tube. The amount of help she has been getting has dropped, including the meds that have been helping her blood pressure, the amount the ventilator is helping her breath, and the amount of sedation given to her. Yesterday afternoon they also pulled her chest tubes out which were helping her drain fluid. All good signs that she will be off the ventilator soon and on her way to getting out of the ICU.

The doctors are cautiously optimistic about moving forward. Because it has taken her so long to get to this point, they don't want to push her and then have her regress. So, we are giving it another day or so to continue improving. Then they will evaluate from there and decide if Kate is ready to be taken off the ventilator.

As for Kates underlying heart rate, she still has what we have been told is a 3rd degree block. Basically her electrical signals that control the beating of her heart are still not in sync. The doctors are not worried about this until she is strong enough to get off some of the meds and off the ventilator.

Kate was weighed last night, she came in at a hefty 14 lbs.......BIG GIRL huh?? Granted she had all of her tubes and other equipment that might have weighed a little, but looking at her thighs she definitely looks what we like to call HEALTHY!!

Sleepy Girl!!!

Well, it's been a week since Kate's surgery. The last couple days, unfortunately haven't brought too much change again. Kate is slowly progressing but we were told that they will not be pulling her breathing tube until she can show that she can maintain good heart function and blood pressure. Also, she can't leave the ICU until they take her off the breathing tube, the pace maker and a few of her drugs that are helping with the blood pressure. It looks like Kate is telling us that things are going to be on her time not ours or the doctors. The doctors have expressed some concern with the slow progress but they think that because of how extensive and traumatic this surgery is, it will just take more time. So we are being patient..........but we are grateful for her progress.

We were able to take out 2 catheters today....yay!!! I tell ya....Kate is not a fan of having anything on her face, so she will be one happy girl when she gets the breathing tube out. Bryan's brother, John, came up this morning to give Kate a blessing. We are so grateful for the priesthood and its healing powers. What a blessing it has been in our lives.

Update for Kate

The last couple of days really haven't brought much change unfortunately. Kate is looking more and more like herself as the swelling decreases. However, she continues to have issues with an irregular heart beat and blood pressure regulation, which the doctors hope will get better with time and healing. The description of the heart beat issue, the doctors told us that makes the most sense was this: Kate's upper heart and her lower heart are not communicating right now, so one is beating faster than the other. Instead of a lub/dub beat, her lub is beating at about 180 bpm and her dub is beating at about 140 bpm, so without her pacemakers her heart is very inefficient.

The blood pressure issue seems to be getting better slowly. Her main problem is when she wakes up she continues to stress and move around causing anxiety and this causes her blood pressure to drop. A little counter intuitive but I guess with a heart that isn't functioning at 100%, when the muscles in the heart get tense from the anxiety, the heart function goes down.
With a few more days we hope things will look much better.

Today they are starting to wean her off the ventilator. With this, she can not be on the paralytic drugs they have been using, so she has been moving and fighting her tubes more and more. This is very hard for us to watch as we feel helpless not being able to comfort her or hold her. We hope this will all be over soon and things get back to normal. We are very grateful though that they are able to perform a procedure as complicated and delicate as this on a baby Kate's size. It continues to amaze us how wonderful everyone is at Primary Children's and how much they care for the children they watch over.

We've been staying in a condo downtown for the past couple of days. My parents have some friends who own it and are letting us use it for the next couple of weeks. We are so grateful, as this has been a huge convenience. The days seem to go by pretty quick. Marcae was able to get a pass to the Jewish Community Center located just north of the hospital. This has been nice for her to be able to get out and get some exercise and relieve some stress. From what I heard, it sounds like a great facility.

Oh, this poster was made by one of the Child-life Specialists here at Primary's. This sums up Kate pretty well : )

Kate was closed up today

Just a quick post today. Kate's chest was closed this morning. From what we were told, it went as smoothly as it possibly could. She looks much better and her swelling has gone down quite a bit. She is still encountering irregular heart rhythm and blood pressure and is still hooked up to many many tubes and machines. We have been tempted to post a picture that shows everything but have restrained. So far so good, she still needs to make progress before she will leave the ICU.

Sunday at Primary Children's

Being at Primary Children's on Sunday is a treat, if you call being in a hospital ever a treat. We love being able to go to the Church Services that they offer. It is a very spirtual meeting. Sunday is also a very calm, slow day, so it's nice to not have all of the "hustle and bustle." Other than doing that, we have just been hanging out with Kate. Today we found out some news that is a little troublesome. Kate's Pulmanary Value has a little leak around it. This was the valve they needed to increase the size of her artery around because of Pulmanary Stenosis, or narrowing of the pulmanary artery. They are trying to evaluate the leak by increasing the oxygen flow to her lungs to decrease the pressure on the valve, as well as a couple other medicines to increase heart function.

Other than that, Kate seems to be slowly getting less swollen and showing signs that her heart is healing from the incision. Her profusion (or blood flow) to her extremities is much better. We can actually feel a pulse in her legs. Her chest has not been sew shut yet. Now, for the sake of some confusion that we have heard from others, Kate's chest is not actually exposed. She has a piece of material sewn to her skin and acts like a barrier. The opening is about 1 1/2 inches and is shaped like a flatened football. Over this she has a betadine patch that acts as a protective barrier to bacteria. They also dress this up with gaze and at dressing that looks like a corset so we don't have to look at it all the time. Seeing it though, is pretty amazing. Her heart beat can actaully be seen through the material very easily.

Thank you again to everyone who is praying for Kate. We really know the support and prayers are working.

48-Hours Later.....YEAH!

Kate has now made it past the 48-hour post surgery mark. Tolerating the trauma that was done to her body is a really big step towards recovery and coming home. Today didn't bring much change though. We do think she looks a little less swollen, and there are different signs that she is healing, such as her heart hate is dropping, her blood pressure is getting easier to regulate with less drugs, and she is using less and less of the ventilator for help in breathing. All signs she is healing and her heart is getting stronger. Unfortunately, she is still having problems with an irregular heart rate. Her upper and lower hearts continue to have a hard time taking to one another. For those of you with medical backgrounds, we were told it is her P-wave in the heart rhythm which is the electrical signal that continues to fire whenever it feels like it. She is also having a hard time maintaining blood pressure satisfactory to the doctors, but all of these issues are typical for the first 3-5 days after this type of surgery. Today, they had to give Kate a temporary paralyzing drug to keep her still. As her sedation medication wears off, she becomes very active, and the risk of pulling out IV's and other tubes that help drain the fluid increase. Also, increased movement causes her heart rate to change and blood pressure to rise. So, the least amount of movement, the better.

We continue to hear that everything looks good and that her healing is going in the right direction, which we are very grateful for. Of course the waiting and watching for us seems very long and unbearable at times. We can't express enough gratitude and amazement for the doctors, nurses and other staff members at Primary Children's. With the small understanding that we have of what has been done in this surgery, it is an absolute miracle. Being able to correct the structures of Kate's heart, which is about the size of a walnut, is amazing.

Progress for Kate

Well, today was a much easier day for Dad and Mom than yesterday. There were very little surprises and Kate made some steady improvements towards being able to finish the surgery by closing her sternum and sewing her chest back together. Kate started the day off by wiggling her right arm around 7:00am, and by about 9:00am she started to kick her legs a little and move her left arm around. These were great positive signs after what had happened with her heart stopping yesterday. There were potential risks of some damage to her brain during the time that her heart was stopped. But, with the doctors performed CPR (basically massaging her heart) until the heart/lung machine was back up and running. So the moving of her extremities and opening of her eyes is a good sign that there was probably no damage done.

Unfortunately for the nurses, Kate continued to move and kick whenever her sedation medication started to wear off. This caused problems with other things. One of the complications that they are dealing with today is an irregular heart rate. The doctors told us that the incision that they make for the repair of this surgery is right next to the electrical system of the heart. It isn't uncommon for the babies that have this repair to have the right and left side of their heart beating at different rates, obviously causing problems. They fix this with two pace makers and medication until the heart has a chance to heal a little bit and hopefully, things will come back into alignment. She has had periods during the day where her heart rate bounced between over 200+ beats a minute down to around 160 beats a minute This, however, was generally associated with her waking up and wiggling around.

All and all, we are much more relaxed tonight then last night. She seems much more stable and has made it through the first 24-hours, which is critical. Again, we really want to thank everyone that has been keeping Kate in their thoughts and Prayers. We know it is this that is sustaining us as her parents and a HUGE reason Kate is doing as well as she is.

On our way to the hospital!!!

Today was the big day and oh what a ride it has been. It is about 1:00am and we just barely walked in the door. The procedure ended up taking about 7 hours total. It's been a long day. We almost stayed up at the hospital tonight but they gave away their last room to parents that live further away from the hospital than we do.

The surgery on the heart is complete. The doctors declared it a success and they were even able to save her pulmonary value and not have to replace it during this same procedure. There were some complications after the they where done fixing the heart and had taken Kate off the by-pass machine. They noticed a small leak in her Aortic Artery. As they were patching up that hole, Kate's heart stopped beating. Not a good scenario, but they were prepared for this. During the the 5 minutes it took to get her back on the by-pass machine they were performing CPR to maintain good blood flow to the brain and were monitoring her oxygen levels. Of course this isn't exactly what we wanted to hear and made it very stressful for us. The doctors let her heart rest for about an hour while Kate stayed on the by-pass machine and they tried again. They were able to re-start Kate's heart and began the process of taking her off the machine. This time it was a success and Kate's little heart kept going strong. She is a little fighter. They decided not to close her up all the way just yet to relieve pressure on her lungs and her chest. She has a bandage across her entire chest....looks like a corset. She has several tubes draining fluid build-up and three or four IV's for different medicine that they give her to help the function of the heart after the huge stress it was under for the surgery.

We are overwhelmed by the skill and ability of the surgeons and medical staff at Primary Children's and what they are able to do for our little Kate. We can't express enough gratitude to them and all of our family and friends who have been praying and showing support for our little family. Kate is doing as well as could be expected and we know that it is through all of your prayers that she has been able to get to this point. We love everyone that has been involved with helping us through this trying time and hope to see you all as soon as possible. We will try and keep this updated as much as possible in the next couple of weeks with updates and pictures. Trust us, you don't really want to see the post-op pictures we have but this one is a pre-op picture, just before the big event.

Am I Chubby or What???

Kate had an appointment with the pediatrician today and she also had her 3rd RSV shot......(not fun). But, we weighed her and she is now up to 12 lbs. 14 oz. She was pretty grumpy for this picture.....hence the look on her face :) Still no word yet on what time Kate is going in. She has to go in on Wednesday for some pre-surgery tests, but are unsure whether or not they will keep her overnight or not. It's interesting because they don't schedule the surgeries until the day before, so it's kind of hard to prepare.

Movie Night

Bubbles, Bubbles.....Kate loves Bubbles!

Sweet Comb-Over

So, Kate is totally losing her hair. Each morning, her Boppy (the pillow she sleeps on) is covered in hair. We tend to find little strands of hair here and there. We're almost tempted to give her a trim, but I can't bring myself to do it just yet, so the comb-over will have to do for now:) She is becoming more and more active each day. She has had a cough for the past couple of days, so I took her in to see the pediatrician yesterday and he thinks she has an ear infection. We also had to go to the hospital to have a chest x-ray because he suspected pneumonia. Luckily, she doesn't have it. So, she's on an antibiotic until her surgery. I can't believe we are down to 1-week. Oh, we are putting together a fast for Kate on Wednesday, January 17th so all those who would like to participate...it would be greatly appreciated. We have strong faith that everything is going to be just fine. Kate is a little fighter and will do great!!! Thanks again for all of your love and support!!!

Two weeks and counting!!

Kate had her Echo Cardiogram today. It was quite an ordeal, as she had to be sedated for a couple hours. But, everything went great. We received some interesting news though. After reading the Echo Cardiogram, the cardiologist made a new diagnosis of Kate's heart condition. They originally diagnosed her with "Tetrology of Fallot" but have come to realize that she actually has what is called "Double Outlet Right Ventricle" or "DORV." It's quite similar to Tetrology of Fallot, except her pulmonary and aortic artery both come out of the right ventricle. This whole heart stuff is so confusing to me, so I have included a website that explains the condition in more detail.
http://www.chw.org/display/PPF/DocID/26514/router.asp
Anyway, they will plan to do the same type of surgery as planned before. Basically, they will use a "patch" to do the repair. She will, most likely, have to have another surgery down the road. However, if all goes well, Kate probably won't have to have another surgery for at least 8-10 years. The cardiologist mentioned that she may have to come home on oxygen for 1 -2 months. But, was quite optimistic that she may not even require oxygen by the time she is released from the hospital....we're keeping our fingers crossed. We're down to 2-weeks from tomorrow (Thursday). It's amazing how time flies. I think Bryan and I are finally mentally and emotionally prepared for this, but are still really nervous. We know that everything is going to go well!
Oh, Kate is now up to 11 lbs. 14 oz. I thought for sure she would be over 12 lbs. by now, but we had to stop feeding her at 2:00 am this morning (because of the sedation). However, we got up and noticed that the feeding tube was on and SOMEBODY.....okay it was me.... forgot to connect it and so our carpet got a nice soaking :) So, Kate hadn't been fed from 11:00 pm until noon today. I tell ya....we may get this whole parent thing down one of these days!!! Dr. Pulver was very encouraged by her weight gain, so we felt good about it!!! She is really starting to chunk up. It's all in her legs though. I have never seen such chubby thighs.
We are planning to do a fast for Kate prior to her surgery, so we will inform you when that will be. We love and appreciate all of you and your concern and prayers for Kate! She is truly a special girl and we are so blessed to have her.

Kate's 1st Christmas

I have been a slacker the last couple of days. It has been a crazy holiday season with Christmas parties, doctor appointments and getting the last minute shopping done.....the Rosenvall's are WORN OUT!!! But, we did have a great Christmas this year. We spent it with the Roper's in Fillmore, as this is Jordan's last Christmas with us for the next 2 years. On Saturday, we had a big get together at the barn with some family friends. It was fun because most have not seen Kate yet. We ate dinner and then Grandpa Roper hooked the hay wagon up to the tractor and drove around town carolling (only in a small town). We didn't go, but it sure looked like a lot of fun. This Christmas was especially fun having Kate with us. We can't wait for next year, as she will understand Christmas a little more. She, of course, got spoiled by the Grandmas!!
Today was a special day as we were able to go see Uncle Jordan off at the MTC. He is going to the Lubbock, TX mission. We are really going to miss him. I love this picture of him holding Kate. It's crazy to think that when he gets home, she will be 2 1/2, walking and talking and will have her heart fixed and her cleft palate surgery behind her. It seems like such a long time from now, but I have a feeling that it will go by really quick!
Kate is continually progressing. She had a check-up with the pediatrician on the 18th. She weighed 11 lbs. 1 oz. and measured a little under 22 inches. She's still not on the charts, but she made the 3rd percentile for her head circumference...WAHOO!!! She is smiling a lot more.....even giggles sometimes. However, I can't ever seem to get the camera fast enough when she is smiling. We have had some LONG nights the over the past week. She wakes up crying several times during the night (which is not typical). Anyway, I think I have come to a conclusion......we think she is teething!!! We're not for sure, but I noticed that her lower gum is a little swollen on one side with a slight bump. So, if it is that she is getting teeth already....we're in for a real treat : ) Much to my dismay, Kate's hair is getting thinner and thinner every day and is getting much lighter. I think she is going to be a blondie!!!
As we reflect upon this past year, we have so many things to be grateful for. We are so blessed to have Kate in our lives and for the many supportive family and friends. We truly don't know what we would've done without this support. We look forward to the starting of a new year.

Merry Christmas!

We went to a Christmas party last night and it was a "Christmas Sweater" theme (hence our festive Christmas sweaters......Yes, those are real lights on Bryan's sweater). We had a great time, but had to check out early because we noticed Kate's feeding tube had come out several inches and we didn't have any tape with us to fix it. Oh well. It was great to get out and be with our friends.

This week has been an adjustment not only for Kate, but for Bryan and I. Kate is still getting used to having the prosthetic in her mouth, but is slowly taking more and more from the bottle. She seems to think that day is night and night is day, so we've had a couple long nights. But, she is continually making progress. She is scheduled for her Echo cardiogram on January 3rd, so the days are winding down quickly.

My designer hospital gown

After a crazy and tiresome weekend, we are back home and tyring to help Kate adjust to her new mouth. The surgery went really well. It took a bit longer than we thought, but it wasn't too bad. The Dr. thought it would take about 1 hour 15 minutes and it actually took 2 1/2 hours because her mouth is so small, so it was a little nerve racking while we waited.
The procedure consisted of sewing together the soft tissue of the palate and tacking a prosthetic devise (like a retainer) to help protect the sutures of the soft palate and act as the hard palate until the next surgery which will replace her hard palate. This will also prevent food from entering the nasal cavity. During the procedure, they do what is called a "tongue stitch." Basically, they sew her tongue to her lip which allows the doctor or nurses, in an emergency situation, to remove the tongue from the airway quickly. Kate HATED it and was actively batting at her face to try and pull it out. They removed the sutures before we left on Saturday and she is a much happier girl. Her recovery has been very remarkable. In fact, we were feeding her from a bottle just a couple hours out of the recovery room. It's still very foreign to her and we're still working with her to familiarize her with the new changes. Having this procedure has really changed the sound of her cry, so we've had to get used to that. We're so glad that it is over and that everything went really well.

"O Christmas Tree"

We finally got the Christmas tree up this week. Kate is totally mesmerized by all the lights. When we feed her, she is more interested in looking at the lights than eating! It's really fun to watch her.
Tomorrow is going to be a big day for Kate. Her prosthetic procedure is scheduled for 6:00 am. (Yah, I know it's EARLY)!! The procedure shouldn't take that long......hopefully not more than 2 hours. We're hoping that she won't have too much pain afterward. She will need to stay in the hospital for 24 hours, so Bryan and I will be staying with her tomorrow night. We want to thank all of you who have fasted and prayed for her. We are so blessed!

Kate's Blessing

Today was such a special day for our little family. Kate was blessed in our ward and Bryan gave her such a beautiful blessing. It was a very spiritual meeting.

Surgery.....Here we come!

Much to our surprise, we got a call on Tuesday from the surgery department at Primary's and we scheduled a date for Kate's heart surgery. The surgery is scheduled for January 18th and it's going to be here before we know it. It's been a little stressful trying to make appointments for her immunizations and Synagis shot. She cannot have her immunizations within 6-weeks of her surgery and she cannot have her Synagis shot within 3-days, so we've had to rearrange her appointments a little. We're going to have a pretty hectic schedule the next couple of weeks. On Tuesday, she was fit for her prosthetic device. She did so well. Her mouth is so small that even the tiniest mold was too big, but it ended up working out just fine. It looks like she's all set for next Friday.

Dad's already teaching Kate the love of golf!!!

Kate's as big as a 10 lb. Turkey!

We spent Thanksgiving this year at Grandma and Grandpa Roper's house. It was quite a process packing for 2 days, but we did it. We pretty much took everything but the kitchen sink. We had a great time. While down in Fillmore, we had family pictures taken at Grandpa's farm. It was such a beautiful day.

Kate had her appointment with the Cardiologist last Tuesday. He couldn't believe how much she has grown. She weighed in at 10 lbs. 1 oz. and measured 22 inches. We talked about the time frame for her surgery. She will need to get an Echocardiogram before Christmas and it looks as though her surgery will be a couple weeks after that. We discussed the surgery and what to expect. The procedure will take about 6 hours. After, she will go to the Pediatric ICU where she will be there about a week and then she'll recover in the infant unit for 2-3 weeks. It's going to be a very trying time, but we have so much love and support that we will make it through it.

Kate also had her Synagis shot Wednesday(the RSV vaccine). She is such a little trooper. She cried when the nurse initially gave her the shot, but was just fine the rest of the day. She will continue the shot each month until March.

Dad's a pro at this feeding stuff!!

Because Kate has been doing so well with her bottle feeding, we were so encouraged that we were going to be able continue feeding Kate and drop the NJ tube. However, I called the pediatrician on Monday to talk about her feeding and what to do next and the doctor was a little concerned about her eating that high of volume. Basically, she is using up so much energy while eating that it's putting stress on her heart. So, he would like us to keep her on the feeding tube for the majority of the day with occasional bottle feeding....Booo!!! This is definitely teaching us patience :)
Kate took her first trip to the car wash on Friday. As we drove through, she just stared at the water and bubbles. She loved it......she takes after her Dad!!
On Tuesday, Kate has her appointment with the Cardiologist. I think that we will talk about scheduling her heart surgery. Also, she was approved through our insurance for the RSV shot. She is eligible starting December 15th. Kate has a lot going on the next couple of weeks. Uncle Jordan's mission farewell is the same weekend Kate will have her prosthetic procedure. We're hoping she will have an easy recovery and be able to make it down to Fillmore.

I'm a little snow bunny!!

We still have Kate off the feeding tube and she is doing so well. Since we've started feeding her just from a bottle and getting her on a schedule, she has been sleeping so much better. She sleeps great through the night and she has been taking longer naps during the day....yay!!!! We're going to continue what we're doing until Tuesday and see how she does and then we'll call the pediatrician and see what he would like us to do. I would love to take the thing out completely, but I'm sure he is going to want us to keep it in until after the prosthetic procedure. We'll see!!

Kate loves to smile!

We decided to shut off the feeding tube all day today and see how Kate does just from the bottle. She did AWESOME!!! In fact, a full feeding is 60 ML or 2 oz. ever 3 hours. Well, she exceeded that. Also, we took her off Reglan (1 of her reflux medications). So far, she has done really well. Her last feeding of the night, I think she was too tired and she ended spitting EVERYTHING up. Oh well. We still keep her on the feeding tube at night. We're going to see how she does through the weekend. If she continues to do this well, we are going to consider pushing her feeding tube back to her stomach. She will have to have it at least until she recovers from the prosthetic procedure in December. We are so proud of her and the progress she is making. She is such a happy baby and we get so excited over every new little thing she does!!

Somebody's tired!!!

Am I chubby or what??

Kate has started to recognize her tongue. She loves to mimic Bryan and I when we stick out our tongue at her. She has also started to roll (with a little help from Dad). But, she is getting stronger and stronger by the day.
We haven't set a date for her first RSV shot, but it will be sometime this month. She also goes to see the cardiologist on the 21st. Time is just flying by.
Kate is going to be blessed on December 3rd. We debated whether or not we would bless her at home or at church. We feel like it would be best to bless her at church. That way, we can bring her in right before she is blessed and then take her home right after. We're a little disappointed that we won't be having an open house with all our family and friends, but it's really important that she stays well before her surgery. Once she has recovered from her heart surgery, we are going to have a BIG party :)

Are those not the cutest little feet you've ever seen??

Kate's 1st Halloween

As you can see, this was not the most comfortable costume. We were able to get it on, snap a few shots and then take it right off. Unfortunately, it didn't last long enough to make it to our Halloween party : ( Maybe next year!!!

Go Cougers!!!

Kate is the biggest little Couger fan, and she doesn't even know it yet. She loves to spend Saturdays with Daddy watching footbal. Let's go BYU!!!

There's a little smile!!!

Daddy's Girl!!!

Kate loves it when Daddy gets home from work!

All Tuckered Out

I can't believe it has been almost a week since the last posting. Kate has been doing AWESOME. She had an appointment with the pediatrician yesterday. She is now up to 8 lbs. 9 oz. and 21 inches long. Wow!! She has finally doubled her weight. She did have to have her first round of immunizations.... : ( She did great, but I am the one that didn't do so great. It was very hard to watch, but we know that the immunizations will be good for her. She seemed to do okay until last night (we had quite a wild night). She was up pretty much all night and we're not really used to that, so Bryan and I have been zombies all day long :) It's totally worth it though. I guess Kate qualifies for the RSV shot, Synagis, which she will get every month during RSV season. I wasn't aware of this shot, but apparently is only given to babies that are "high risk" and Kate qualifies for it. It's supposed to be a very effective shot to prevent from getting the virus......it better be for $1,200 a pop!!! So, she will begin those shots in November.
Kate is scheduled to have the pallet procedure on December 8th. We will take her in on November 27th to be fit for the device and the 8th is when she will go in and have it tacked to the roof of her mouth. We're hoping that once she heals from that, she will be able to do better with the bottle feeding. She's still dealing with the reflux issue though. What a pain!!!! We've been experimenting with soy-based fortifier and milk-based. She absolutely HATES the soy-based and tolerates the milk-based better. However, it seems that she has been refluxing more since we've switched. If we had it our way we would just feed her straight breast milk, but it doesn't have enough calories.
We have been so blessed and continue to receive blessings each day. This month, our ward did a ward fast for Kate and we have felt each and every prayer. We have such wonderful, supportive family and friends who love Kate so much.

Kate's having a BAD hair day!!!

Well, it has been quite an eventful week. It seems like the days and weeks go by so fast. Yesterday was especially eventful. We woke up and noticed that Kate's NJ tube has come out yet again. SERIOUSLY!!! Well, at least it wasn't mommy and daddy's fault this time :) Anyway, Kate had an appointment with her cadiologist yesterday at Primary's, so we were able to get her into Radiology to have have it put back in. I think our biggest challenge with having Kate home is monitoring that darn feeding tube. Anyway, things went well and we were even able to meet one of Kate's nurses for lunch. Nurse Katie was amazed at how much Kate has changed since she left the hospital.
Kate's cadiology appointment went really well. She is now up to 8 lbs. 2 oz. and 20 inches long. She has almost doubled her birth weight and has grown 4 1/2 inches. It is so wonderful that she is growing and making progress each day.
Today, Grandma Roper came up and we took Kate to her appointment with the plastic surgeon. He seems to think she is ready to have the prosthetic devise put in to close off the gap on her cleft pallet. The procedure should only take about 1 hour, but Kate will have to be sedated :( It should be a quick recovery though....just 24 hours she'll have to stay in the hospital. By having this procedure, it will allow Kate to be able to better suck from a bottle and it will act as a retainer to help close the gap. That way, by the time she has the major surgery to fix the pallet the gap will be much smaller and easier to close off completely. The doctor thinks she will be ready by the first of December.
After Kat'e's appointment we went down to see Great Grandma and Grandpa Christensen in Orem. They were so excited to see her.

Check out my cute new booties.....

One of Bryan's co-workers made these cute little booties for Kate. We love them.
Kate is really starting to take on a personality of her own. She is a happy, mellow baby. She really likes to blow bubbles, grab on to mommy's hair and she still loves to pull on her canula.....the little stinker.
Yesterday was her 3-month birthday. We can't believe how fast time flies. She has been home for 7-weeks tomorrow. We are getting more and more used to her and have taken her off the monitor during the day. It's been so nice not having that thing beeping all the time. We do, however, turn it on at night for our peace of mind. We have also tried taking her off the oxygen a couple hours a day to get her used to not having it all the time. She does really well and we're hoping that it won't be too long before she is off it completely.
Kate's doing really well with her feedings. She is not quite up to full feedings yet, but we try to push her a little more each day. It's interesting because some days she does really well with the reflux and other days are not as good. We think she is starting to outgrow it.........we hope!!!

All dressed up....No place to go!!

Kate is changing day by day and it is so much fun now that she is filling out her clothes. This outfit is one of our favorites. In fact, Kate's little friend, Laney let her borrow it. Even though she doesn't get out much, it's fun to dress her up and take pictures :)
Kate continues to make progress. She is now 7 lbs. 10 oz and every ounce counts. She's going to be ready for heart surgery in no time. She has a follow up with her cardiologist a week from today. We're hoping at that appointment we will be able to start planning for the surgery.

We deserve the "Parent's of the Year" award!!!!

Putting Kate to bed is quite a process, as we have to transport all of her equipment with her. Bryan and I are quite a team though. However, as we were taking her into bed from the living room last night, we failed to disconnect the feeding tube and ooops....the feeding tube came right out. Since it was so late, we decided to wait for the next morning to take her in. So, we took her into Primary's this morning to have it put it back in. Kate is such a little sweetheart and did so well. We are hoping that this is the last and final time this happens :)

Kate's new friend

Our good friends Elizabeth & Brody came to visit and brought their new baby, Shawn. He was born almost 4 weeks after Kate. They were both pretty grumpy that night : )

Oooops....She did it again!!!

Kate is constantly keeping us on our toes. This morning I noticed that Kate's feeding tube had been pulled out a couple inches. It's hard to know if it's been pulled out from her intestines into her stomach. So, to be safe I took her in to get an x-ray. Lucky for us, it was still there....but just barely. The radiologist just pushed it back into place. Kate is such a good baby!! We have been so lucky. It's fun to see the many changes from day to day.
As we mentioned before, we ended up taking a little trip down to Fillmore on Sunday. It was a lot of fun, but A LOT of work taking all of her equipment. It might be a while before we do it again : ) But, she did great with the long car ride. Kate's a lot like her mom........she loves road trips.