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.