Just when we think we have things figured out and feel like we are on the road to recovery, we come across a bump in the road.......like getting teeth!!! Kate was doing great with her feedings until a few days ago and now doesn't even like the bottle in her mouth. However, she loves to bite down on our finger, which is about all that will alleviate the pain for her other than Tylenol (of course). It's interesting because she is getting her 2 "eye" teeth on the bottom, which is not very common. It will be interesting to see how it changes her looks. She has also been up a lot during the night, which we haven't been used to.

On Saturday, I ran the Rex Lee 10k in Provo. I had planned to push Kate in her stroller, but it was a little bit chilly when the race started, so she hung out with Dad. I'm hoping to do a few more races this summer so she can be my running buddy.

Out for a walk

Kate has had 3 appointments this week, so we have been busy going back and forth to Primary's. We absolutely love the weather. It has been so nice to finally be able to take Kate out without worrying so much about her getting sick. It still takes her awhile to get used to the sun and the wind, but I think she really likes it.

This past weekend was a first. I took a trip down to St. George with some friends for a "girl's weekend." It was really hard because this was the longest I have been away from Kate (even when she was in the hospital). It was a nice change for her being with just Dad.

Devin, Drew, Kate and Gavin

We're Back!

It seems like this week has gone by way too quick. We had a great time in Fillmore with Grandma and Grandpa Roper and the cousins. Bryan left for Florida early Monday morning. Kate had an appointment to get her Synagis shot that day, so we planned to just leave right after her appointment. Well, we got the car all packed up and ready to go and were on our way. I got about 1 mile from our home when the car ran out of gas.....ahhhh! Are you kidding me??? I called the doctor to let them know the situation and they couldn't get Kate in until later that day so I just decided to drive to Fillmore and scheduled to get Kate's shot on Friday instead. well, I got a call the next day from her doctor and they are out of the office on Friday and wouldn't be able to give the shot until Monday (today). She strongly urged us to bring her in because she didn't want to take any chances with her getting RSV. So....Kate, Grandma and I drove up to American Fork on Tuesday to get her shot. I'm so glad I did, though, because I would feel horrible if she did get RSV. It's a good thing that Kate likes to travel : )

Bryan flew in last night and was so glad to be home. He bought Kate this cute little Disney outfit from Orlando. He loves to spoil her : )

Grumpy Pants

Not a fan of "tummy time"

Lately, we have been trying to get Kate to have more tummy time and she absolutely HATES it. So instead of just putting her flat of her tummy, we will prop her up against the cushion of the sofa and let her use her hands. She will tolerate it for a few minutes but will throw a fit. She's really getting a strong personality. I have to say that Bryan and I have spoiled her by not allowing her to get used to it from the start. So, we have our work cut out for us : )

On Wednesday, Kate had an appointment with her cardiologist. They were really impressed with how well she's doing. In fact, her heart is not requiring any additional oxygen.....which is great. However, her lungs are still recovering and trying to get stronger so she will need to be on oxygen until they can completely heal. We were a little disappointed that she couldn't go off of it sooner, but we look at it like we have done this for 8-months now so I think we can handle it for a bit longer. We are encouraged, though, because Kate's cry is a lot stronger which is showing signs that her lungs are getting more healthy. Unfortunately, we had to put the feeding tube back in on Tuesday. She's still not taking enough from the bottle to justify taking it out for good. However, with all of the experimenting we have done over the past few weeks, she still manages to gain weight. She is now up to 15 lbs.

Today we took Kate to church. She made it through all 3 meetings. WOW!! It's been so nice to be able to take her, especially now that the weather has been so nice. Bryan is leaving for Florida tomorrow for work, so Kate and I are going to Fillmore for the week. We are really excited.

We went to Peyton's 1st birthday party this weekend. Peyton was Kate's roommate in the NICU and he is doing so well. He was born at 24-weeks and weighed only 1 lb. 7 oz. It was fun to see him because we haven't seen him since we left the NICU 6-months ago. It is absolutely amazing the things that can be done to save a baby that size. It looks like Peyton is trying to make a move on Kate already :)

We also took out Kate's feeding tube this weekend. When we took it out, we changed her cannula and snapped a quick shot of her with no attachments. So, it was fun to see what she looks like without all those tubes. So far, she has done really well and we want to see if how she will do without it. We're hoping that she will be able to handle it. Basically, she just needs to continue gaining weight. I guess we'll find out when she goes up for her Cardiology appointment on Wednesday.

Elf or Yankees Fan???

Grandma and Grandpa Roper brought this cute little outfit back from New York a few months ago. We are so excited that she finally fits into it. By the way things are going, she will probably grow out of it quick (her thighs and cheeks are a good indication)!

The last couple of days have been awesome!! Kate has been reflux-free since Sunday. She is a much happier baby and sleeps so much better now. We think that she is finally on her way to outgrowing this reflux.

Get me outta this thing!!!

I don't think Kate is a big fan of the Bumbo??? We spent the day in Fillmore on Sunday. Kate loves her Grandma Roper. Also, we celebrated Bryan's "32nd" birthday on Friday......yes he's getting OLD!!!

We actually feel like things have gotten back to normal again. Kate is continually getting better with the bottle. We have stopped her continuous feeds and are feeding her a bottle every 3 hours. Whatever she doesn't take, we bolus feed her through her tube. This is actually helping her to recognize hunger. She is doing really well. In fact, she has had no reflux in over 48-hours..Yay!!
We've also stopped fortifying her milk, so she is just getting breast milk now. Her weight gain doesn't seem to be an issue anymore, so we're going to see how she does for awhile.

Kate's getting stronger day by day and we've been able to turn her oxygen down at certain times during the day. She has been on 1/4 of a liter since her surgery and her sats have been staying up in the 90's lately on an 1/8 of a liter. This is great news because it is showing us that her heart is starting to heal and become stronger. She has a followup appointment with her cardiologist next Wednesday. It's going to be interesting to see how he feels about her progress (we've learned, we never know :)

Kate loves her Great Grandpa Rich

Well, we feel like Kate's ready to start bottle feeding again. Yesterday I fed her about 40 ML (a little over an ounce) and she did really well. I then fed her later on that night about the same and she threw everything up. It's kind of frustrating because it's never consistent with her. However, she has done really well today and hasn't had any reflux. She is also off the antibiotic (which we think it made her sick) so that could make a difference. We'll cross our fingers and see. She has an appointment with a speech therapist next week.

Today, Great Grandma and Grandpa Rich came to visit. They are absolutely amazing. Kate is their 34th great-grandchild. At 92-years-old, they are as active as can be. In fact, they just got back from a road trip to Denver to see their 36th great-grandchild blessed. I hope that at 90, I am doing as well as they are.

When it rains.....IT POURS!

Life with the Rosenvall's wouldn't be complete without a little excitement. Kate was released from the hospital last Wednesday and we're really excited to have her home. Well, I ended up in the E.R. on Thursday as a result of a kidney stone. Bryan and I have to laugh because we must have some kind of attachment to hospitals : ) Anyway, it turns out the stone is about 3 times the size of a normal stone and I had to have it surgically removed. So, I spent the weekend drugged up on Percocet and had the surgery yesterday. Everything went well. Grandma Roper came up and stayed with Kate while Grandma Rosenvall and Bryan were with me in the hospital. In a way, it was kind of nice because we have been so nervous to leave her with anyone so this is the first time and she did great.

Kate is doing much better since she came home from the hospital. We've come to realize that her main problem is her eating. During her stay at the hospital, we did some experimenting with her feeding. She still has the NG tube (in her stomach and not her intestines) and seems to be doing fine. We've decided to give her a little bit of a break from orally feeding her because she still seems to be pretty weak from her surgery. The great thing, though, is that she is gaining weight. On Friday, she was weighed at her doctor's appointment and is up to 14 1/2 lbs. She is finally on the charts with her weight and is in the 10% percentile....WAHOO!!! We are so grateful that her heart is functioning as well as it is. We've really noticed that she has much more energy now than before her surgery.

Back to Primary's AGAIN!

Well, unfortunately Monday afternoon brought an unwelcome change for us. Kate has continued to have coughing, choking and throwing-up spells and our pediatrician wanted us to check her back into Primary's. He wanted to get a bunch of tests run and make sure her heart is still OK and find out why she seems to continue having these spells, which are tough on her healing body.

While going through these tests she has been doing really well. They x-rayed her chest to see if her heart has increased size which is a sign of stress and heart failure. The good news is her heart was pretty much the same as it has been post surgery. The x-ray did show that she has some fluid in her lungs which the doctors are worried about causing serious pneumonia, or sickness from some type of virus. After taking her blood and running the necessary tests everything came back negative, so she isn't necessarily sick either.

Basically, the problem is stemming from her feeding and either issues with reflux or how she swallows. Before the surgery Kate was steadily improving in these areas and we were excited to hopefully pull her feeding tube out post surgery quickly. We think this will still happen, just not on our timeline but Kate's timeline. For now we are going to help her get stronger without dealing with the choking, coughing and throwing up by limiting or eliminating feeding Kate from a bottle for a few weeks until she becomes stronger and can do it correctly without aspirating the food into her lungs.

The good news is, Kate has been Smiling at us, responding to us and playing with her hands much more since Sunday. She seems to be getting back to the old Kate before her surgery. We are very excited to see this and know she will just get stronger and stronger. Thank you again for all your prayers, thoughts and concern for our family. We love hearing from all those who call, we hope to see you all soon.

Home Sweet Home!

It's been a little over a week since Kate has been home. I can't even tell you how nice it is to have her home with us. We've definitely had some ups and downs, but she is doing great. Her oxygen levels are staying where they should be. The only hump we've come across is her feeding issues. I think we've been too quick at pushing her and she is letting us know that she is not quite ready. She still has the NG tube, but we have stopped feeding her orally because it seems that she is still quite sore from having the vent for so long. Well, we can't tell if she is suffering from reflux or if it's her throat is still swollen. We made an appointment for her to have an upper GI test on Thursday to see what is actually going on. The interesting thing is she is being continuously fed into her stomach, so if she had significant reflux you would think that she would be throwing up all the time,which she's not. We really think she just needs more time to heal. She is still a little weak, but is getting much better from day to day. She started playing with her hands again, which we are really excited about. It's going to take some time for her to get caught up, but with small steps she will be there in no time. We are really encouraged with her weight gain though. She was weighed on Tuesday and was up to 13 lbs. 5 oz. That is great, considering all she has gone through the last couple of weeks.

Yesterday, Kate had her "1st" haircut. My friend Charlynn (who happens to be a stylist) came over at the right time, otherwise it would've been a disaster. Bryan wanted to cut it all off, but I had to put my foot down. She cut just enough off to even things up.

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 : )