Fetal Echo Results!

I was waiting to post because I have some fun pics of Kaidence that I wanted to load.......pictures not loaded. I will post anyhow. Friday was our fetal echo and I was nervous. Our appointment was at 9:30 at Primary Children's and we took Miss K with so that she could see that others get these things done as well. Everything with the babies heart looks normal. The function is great and as of this point the baby does not show signs of cardiomyopathy. Big Sigh.........although, they were sure to let us know that things can always show up later in life.

I found Kaidence's pathology report from when she was transplanted. When they explanted her old heart it was cut up and studied and then a report was written on the findings. Kaidence had normal heart structure, besides the things that were caused from her heart failure and cardiomyopathy. So basically, no abnormal structure to it. I also read in a genetics report that all findings are still leading to viral myocarditis which led to dilated cardiomyopathy. That every test run, came up negative for any genetic findings. Cardiomyopathy is one of those diseases that does not have much known about it yet. During our fetal echo the doctor said that research is just starting to scratch the tip of the iceberg for cardiomyopathy.

So for now we are counting our blessings that so far things look well with the baby. The baby is getting pretty active, especially when I lay down for bed. We are so excited for our new little one, although it still seems so far away.
We embrace these moments of peace that the Lord grants us.

I will get those pictures loaded, hopefully this week.

OUR BABY IS...............

A ............SURPRISE!!!! I guess that you will just have to wait and see as well. McCaden was the only one we tried finding out with. Camden was pretty dang obvious and Kaidence we left as a surprise and she has been full of them ever since. We are just hoping this one will be a surprise only in the beginning.

I was nervous as today approached. They took some extra good looks at the heart. So far everything with her looks good (knocking on wood). The baby is a great size for where it should be and my progesterone shots so far seem to be doing their job and keeping preterm labor away. My migraines have finally tapered off, that is a blessing in itself.....I can function again!!! We go for our fetal echo on the 11th of this month, I know that I will be nervous all over again. Kaidence's cardiologist said that sometimes cardiomyopathy can be diagnosed on ultrasound and other times it doesn't show up for awhile or even years. However, we are all still banking on the fact that she only became ill because of the stomach virus. We are just playing it safe.

Better go. We still have much cleaning up to do. Our basement flooded this weekend. Who would have thought that 2 hours of having the toilet tank filling over would cause so much of a mess and make it into so many different rooms. Kinda sad, I had to throw away a lot of pictures from high school and other things. I guess that flooding is one quick way to dejunk!

PARANOID AND A BUSY DAY!

PARANOID!!!!!! Any one else have this problem???? I do really well for months at a time and then all of a sudden, I start to ask questions. Because we have no "positive"diagnosis for Kaidence, we have to just go off thinking it was viral. With no family history, there is always the chance that it is some genetic gene that started with Mike and I. I know for 100% that this IS part of Kaidence's plan, that I do not doubt. However, every now and again, I start questioning myself. What if we never went on that vacation? What if nobody had been sick? What if it really isn't from the virus? What if she had it all along and I never noticed? What if my other children have the form of Cardiomyopathy that isn't discovered until around the time of puberty? What if I did something wrong during pregnancy? I also have plenty of "what ifs" for Kaidence's future, but that I know is once again in the Lord's hands. This goes on and on. Normally, I don't think much about it. However, I think that with this new pregnancy the paranoid me is taking over. I know that I have my fetal echo coming up and my hands start sweating when I think about it. I knew that I would have these feeling and worries if I ever decided to have another child, just didn't think I would find myself looking so far into Kaidence's past. However, no matter how many thoughts I have of the "what if''s,"they could never compare to the countless times a day that I count my blessings and realize the miracles I have seen in the "what IS" in my life. I understand how incredibly blessed we are. Kaidence is here because of an AMAZING family, a darling little boy and a loving Heavenly Father that knows her plan in life.

Anyhow, today was a long day at the hospital. It started out with labs at 8:15, ENT at 11:45 and then cardiology at 2:00. We made it back home around 5:00. K's ENT appointment went well. They scoped her today (sent a camera up her nose and down her throat) to get a look at her vocal chords. I explained to her earlier what was going to happen and she was such an angel. Yes, she cried as they were scoping her, but that was it. God has defiantly blessed this little girl with a very unique look on life and patience.

The verdict is that K would greatly benefit from the vocal chord repair. It has only been done on 20-50 kiddos (max) in the US and Dr. Smith says that he has done at least half of them. They will take a nerve from her neck and thread it through her vocal chord. This will not cause the vocal chord to start working again, but it does give it some physical tone and bulk (like with muscles) so the left vocal chord will not have to compensate so much. Currently, Kaidence's airway does not completely close when it should. This is why I am so paranoid about her choking or aspirating and this is why she does it so often. Having her vocal chord repaired will help her voice and cough be stronger, helps with her O2, help her swallow easier and protect her airway when eating.

Dr Smith feels that this will be successful with Kaidence and we are excited to get it done. You never want your child to have to have surgery, but she needs to go to school and play with friends without having her mommy there to do the Heimlich if something happens. She knows that today's ENT appointment was to help her voice so that she can sing like the Little Mermaid, with that explanation she was content. Her surgery will take place in June.

Next was cardiology. I was SO nervous for today's appointment. Once again I think it was a combination of the pregnancy hormones, Kaidence's recent headaches and the fact the we hadn't been to cardiology for 3 WHOLE MONTHS. I was so nervous for the echo and today it seemed to take longer than usual. When they left to check the pictures they were gone for awhile and then came back saying they needed a couple more. This usually happens to us if something looks off. Thankfully her echo looked great and we don't have to go back for another 3 months!

Kaidence's white count is a little high, but we think that is just from a viral infection . We will keep a close eye on that and her headaches. Cardiology was not thrilled with Kaidence's recent weight loss, which I was prepared to hear about. I explained to them that she was slowly gaining, but then Kaidence needed to be like a normal child. That means GOOD EATING HABITS. We know that she CAN eat, therefore she needs to learn that she cannot have Instant Breakfast for every meal with ice cream and potato chips. What parent would think that was ok for long term? So we have had to pull back and broaden her horizon with 'real food'. This is starting to come along and hopefully her weight will pick back up. She will eat a half of a sandwich at a time, or a whole hot dog without the bun (OK, I know that a hotdog is not 'real food', but have you seen the calories in them?). Oh and does eating ketchup count? She would drink it if I let her. So eating is still our goal and honestly may always be with her.

Kaidence, has started her training so that she can get employment at PCMC in the future. Whether it be in the lab trying to take her own blood, in the Dr's office taking her own BP and temperature or in the echo placing all of her EKG stickers and spreading KY jelly all over her chest with the wand. Watch out and fear for your jobs.....she is ready.

Today during her echo she was so cute. As they were taking ultrasound pictures of her heart, they turned on the volume so you could hear her heart beat. As proud as could be she turned her head quickly to Belle doing the ultrasound and said "that's my babies heart beat in my tummy." The rest of the ultrasound she kept pointing to the screen and saying "see my baby" as she rubbed her belly button. Yes, she has been to my ultrasounds and as always.....there is never a dull moment with Kaidence.

For being at the hospital today for over 6 hours you would think that Miss K was ready to go home. Nope, not the case. In fact she spent the majority of her appointment hanging out with the MA's at their desk while I sat in the room and chatted with the transplant team. I kept telling her that she needed to come back in the room, but they insisted that she was fine to hang out with them. And when it was time to go home.......she cried and I had to carry her out of cardiology. She may not have been ready to leave, but I sure as heck was.

So that sums up the day and gets things up to speed with Kaidence. Thanks for checking in and have a good one!!!!

.....IT REALLY DOES HAPPEN

Is it really happening? I keep asking myself, pinching myself. KAIDENCE is EATING and taking all of her MEDS by MOUTH!!!!!

Since July 2007 when Kaidence got the virus that attacked her heart and put her into heart failure see has been tube fed. During the many months she spent in the hospital she was in a medical coma and therefore tube fed into her intestines to prevent throwing up and aspirating while intubated. When she was transplanted, we found that she had to relearn how to swallow and everything else because she had been intubated so long. We took her home with suction and suctioned her every couple of hours. We also learned that she had damage done from the lengthy intubation period and that her vocal chord had become paralyzed, therefore she could not cough and protect her airway.

Months after transplant we pulled kaidence's tube from the intestines into the stomach and she started getting food in her tummy for the first time in a VERY long time. At that point I thought the whole feeding thing would be a breeze. Who doesn't love to eat????? I was so wrong. We knew we were once again into for the long haul and so that same summer she got her g-tube - it was the greatest thing ever!!!! Kaidence was throwing up 5-6 times a day around the clock. Oh, the smell of thrown up vanilla pediasure! Her stomach was not stretched. Needless to say many of you moms know that struggle from this point on. The laying in bed at night and thinking of how you can run feeds at some magical rate to keep your kiddo from puking. How you can quickly put weight on your kiddo before the next cardiology appointment.

After countless hours of feeding therapy, wasted baby food, doing the Heimlich, chipmunk cheeks full of food that she would spit everywhere 20 minutes later and many tears of frustration...........it has happened. It started when I would tell her that if she chose to not eat her food that I would have to feed her through her g-tube. That was all it took, she would say "no g-tube" and finish every time. I have waited on posting because I am afraid I will jinx us. Suddenly Kaidence is an eating machine. She is constantly hungry for anything and everything. I find myself just starring at her. I cannot believe my eyes. For example last night I gave her all the left over mashed potato's and gravy knowing that she would never eat it all, but wanting to get rid of the left overs. She ate every bit of it. Then later that night we went to the Artic Circle for ice cream. I almost got her a kiddie cone, but then knew that she would want the same as her brothers. It was a big ice cream cone so I figured I would have some of hers. Not so, she ate everything....including the cone. Then she proceeded to tell me that she wanted a cheeseburger. What?????? So I order her a cheeseburger and had her split it with camden. She ate every last bit of it.

With her meds we started by flavoring her blood pressure medication and she loved it. So we then went to the others. Now she is taking all of her medications by mouth as well. Is it time to say goodbye to the g-tube? Possibly, but I m too afraid. It comes in much to handy when she gets sick. I plan on keeping it for awhile just to be safe. Also I want her to have it for a vocal chord surgery that will hopefully be coming up in the next couple of months. I am sure that will be pretty rough on her and we will need a way to get her meds and food during recovery. I figure, if you have it you may as well use it.

As of right now I have a garage full of Nutren Jr Vanilla. It does not have the added fiber. I may also have some cans of Duocal. I am not getting rid of all of it, just in case. However, as the expiration dates get closer I will be getting rid of it. I have some that I do need to get rid of, if you are interested in it, you may have it. Just let me know!

AN EASTER HEART FOR MASON!!!

Happy Easter family and friends......as you know I BELIEVE IN MIRACLES. I KNOW that Heavenly Father has a PLAN for each of us. My heart is full of emotion for these things that I know and have witnessed in our own lives. Kaidence's little heart buddy Mason is getting a NEW HEART for EASTER.

If you remember, Mason is the little boy who's mom I sat and cried with while the doctors at PCMC told her that Mason was not eligible for a new heart and that he had about 3 months to spend with his family. Since then Stanford University has agreed to list Mason for a heart. Summer has been living at Stanford University while Mason was listed for a heart and her hubby and other kiddos have been here in Utah.

Mason should be going in for surgery this afternoon. You can follow his blog HERE. Please pray for the many involved. PLEASE pray for the sweet family that on this Easter day with their broken hearts, turned to another and gave them this gift....of LIFE and HOPE. How appropriate for today.

May your hearts be fuller today and may the love that Heavenly Father has for each of you be known and treasured.

We love you Mason!

A SURPRISE FOR US!

Well it seems as though I cannot hide much longer. I am here to announce that we will have a new addition to our family this October. OK, I always deliver a month early so most likely this September. We are excited, terrified and thankful all in the same breath.

The kids are very excited and I think that this will be such a great thing for Camden to see what it is like to have a healthy little baby in the family and great for Kaidence in so many ways as it will help to pull that attention away from her in a healthy, normal way. After all, we want her to be a normal and well rounded kiddo. McCaden is pretty excited as well, except for the dirty diaper thing.

This decision was one that we have contemplated for a couple of years. Mike and I always wanted more kids, but then Kaidence got sick. I remember sitting in her hospital room and telling him that he might as well get fixed because I WAS DONE!!!! How could I chance my heart on more heartbreak? We met with genetics last summer and no new info was given. They still have no hard evidence of exactly what happened with Kaidence, but they really think that the stomach virus was the causes of her heart failure and deep down we do as well, but I still find myself wondering if I did something wrong. They basically think it was all bad luck. We have always had issues with pregnancy losses in the past, however after everything we have seen with Kaidence and all the amazing families that we have met along the way we now have a different perspective than many others may. I guess the innocence of 'be the perfect, healthy mom during your pregnancy and you will deliver a perfect healthy baby' is no longer.

Could we handle another? What about the age gap if something happened to Kaidence? What about the times that we spend in the hospital, the boys are already use to life this way? What if we had another sick baby? Can I give everyone enough attention? What if I am on bed rest again, who would take K to cardiology? What if we delivered another preemie like McCaden? On and on this went. We could see so much good and happiness, but we could also see all the "what if''s".

Needless to say, Mike and I did what we have learned to do with many other important things. We prayed and turned it over to the Lord. He knew what was meant for our family and he knew that we would be accepting either way. Nothing happened for a long time, in fact we just figured that was our answer and that was that. Then one stressful morning with Kaidence at the hospital we found out. It was the morning if you all remember that her heart stent disappeared from her LPA and they were worried about needing to do open heart surgery that day. I was sick with walking pneumonia, bought a test from the hospital pharmacy (great tests btw and inexpensive too) and took it. I knew that I needed medications and that there was an unlikely but possible chance I could be pregnant. I was shocked to see that I indeed was. I was excited, but guarded. My fear and worry at that moment was on Kaidence and this possible surgery.

Things with K worked out and the reality of the pregnancy was setting in but then I started have possible miscarriage signs. I thought for sure that this was the case, after all I had McCaden (2 miscarriages) Camden (3 Miscarriages) and then Kaidence. We went in and checked the baby and the tech thought the baby was behind in growth and that the heart rate was low so we rescheduled another appointment 2 weeks later. At that appointment I was searching for the little heart beat flutter I think before the tech was and I found it. I could also tell that the baby was much bigger than the last time. Its heart rate at 8 weeks 6 days was 179. I said a silent pray and thanked Heavenly Father for this gift.

We know that Heavenly Father has a plan for our family and each person in it. We will do our best, make the best choices that we can and walk forward in faith, happiness and gratitude for this gift we have been given. I cant help but feel that it is somewhat symbolic. Part of me feels that it is a bit of closer to everything and HOPE for the future. Our family is moving forward. Yes, life is still full of the 'what if''s' and always will be. But I guess that without the 'what if''s' we would not be thankful for the good of the 'what is'.

So there you have it because like I said it is becoming obvious. Baby #4 is due October 13th and we cant wait!

***** Kaidence is doing well. She is still on antibiotics from aspiration pneumonia. She aspirated while drinking her milk and watching "The Little Mermaid".....go figure. We spent last Sunday in the ER with her. Her labs are looking better and she seems to feel fine. Thanks to those who were wondering.

A BIRITHDAY WISH FOR AN ANGEL!

Happy Birthday to the Little Angel that gave Kaidence her new heart and her new found life.

I never realized that yours and Kaidence's Birthdays are exactly a week apart.! I hope your family knows how amazing they are. I am so thankful that they have allowed us to be a part of their lives. Your picture sits in our home next to a pewter angel statue and a statue of a little girl holding a golden heart. Your smile is infectious. Today we will be sending some balloons to heaven for you....be sure to watch for them. The one with the red heart will be from Kaidence herself. I am sure that McCaden and Camden will find a Spongebob balloon just for you. I wish that I could jump on a plane today just to go and hug you family. Since I can't hug them today, please send them the hug of an Angel, especially to your mommy.

Happy Birthday Sweet Boy! May you have fun running and playing with the angels today!