Tuesday, November 1, 2011

I've been reflecting a lot lately on the past year and all that we have been through and all of the changes that have occurred because of the challenges we have had to face. Specifically, I have been thinking a lot about the challenges that I have faced in the last year. Having a child with special health needs makes me look at my own health whether I want to or not and really examining where I am and where I want to be in my health.

When I was growing up I had to watch my Mom deal with some really incredible health issues. I watched her struggle and fight for her life everyday and she did it with a grace and courage that I have yet to see in anyone else. For as long as I can remember she fought against her weight which in my opinion caused her major health battles. After seeing her go through everything she did I made a pact with myself that I would never be like her physically. I promised myself that I would do everything I could to be physically fit and healthy no matter what. I have kept that pact in my mind and heart even up until now.

In the summer of 2009 I realized that I had "let myself go". After having 2 kids I had put all my focus on taking care of my husband and 2 kids and that I didn't have time or energy to put into myself. I decided that summer though that I was going to change my lifestyle. I started exercising and eating right and I started to change my thinking about food and fitness and self worth. That was 2 years ago and everyday I still have to remind myself that I am worth being healthy. I remind myself that my kids need me to be healthy and my husband needs me to be healthy. I need to be healthy so that I can teach my kids to be healthy and for Pax it is of HUGE importance that he lead a healthy lifestyle.

Having Pax around has made me look even harder at myself and it makes me take things a step further and look at what we are teaching the boys about health. I'm also learning that I have to rely on God to give me the strength to lead a healthy lifestyle. And ultimately I have to find my self worth in HIM.

Today I "fell off the wagon" big time and about ate myself into a candy coma. So to prove to myself that it doesn't matter I made myself work out really hard before bed and it felt so good!

These days my motivation is the picture of my Mom on my mantel, as well as my wedding pictures (I was skinny then. :) and of course Philippians 4:13 (AMP) "I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through HIM Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency].

Josh and I Summer 2009

Josh and I Halloween weekend 2011

Tuesday, October 25, 2011

My goodness it's been awhile since I've posted! There have been so many nights I've wanted to blog, but couldn't because of a stupid computer power cord that tries to fry the computer. Grrr...anyways here's a quick Paxy update.

He went for his cardiology visit this past Thursday. The pressures were the same as last month, which is great news! The average pressure was at 20! Wooooo! His doctor said this is the most comfortable she has been with his heart thus far. Therefore we get to wait until December to go back! And she decreased one of his heart meds from twice a day to only once a day, which is also great news! It's so nice to celebrate these "little victories". I'm sure to anyone who does not have a heart kiddo it seems dumb to celebrate getting to skip a month of seeing the doctor or getting to decrease a med, but it's the little steps that make a big difference. It's the first time since he was born that his doctor is "happy" with how he's doing and we've actually gotten a good report. *sigh of relief*

I feel like so much has happened in the last month, but for now I will leave you with a few pictures of Paxy. Oh and by the way, he is finally crawling and sitting up with no help. This means that he will NOT NEED PHYSICAL THERAPY!!!! Woo! He's such an amazing little boy!

Friday, September 23, 2011

On Tuesday Pax went for his monthly cardiologist visit. Once again, it was a good visit. Dr. Madranero said that the pressures around the area they just repaired has gone up some since his last appointment, but not enough to worry her. The averages were between 19-23. At an average of 45 they would do a diagnostic heart cath to see what exactly is going on. Dr. Madranero is hoping that they won't have to do a heart cath for another 4-6 months. Of course, the pressures could stabilize and not increase at all, which is what would be the best thing to happen. :) Overall she was very very happy with how he's doing and once again was amazed that through this whole ordeal he has never shown any outward signs of anything happening to him. This just makes me smile everytime. :D She is also hoping that in the near future we will be able to stretch our appointments to every other month. How awesome would that be??!!

On Wednesday I took Pax for his 9 month checkup at our new pediatrician. I can't tell you how relieved I am to have him at a new office and with a new doctor. *sigh* It's a very small practice with just 1 doctor and a few nurses. And bonus, one of our good friends works there! I'm so happy to have a doctor that actually speaks English and cares about my kid and can actually help him. Anyways, I could go on and on, but the important thing is that he's doing beautifully in his growth and development. He's sooo close to crawling. He's been getting up on all 4's and tries so hard to move, but isn't quite there yet. In the meantime he is very content with just scooting at the speed of light on his belly. He's also been learning to stand and he's been doing quite well. I would expect him to be starting to take steps with help in the next month or so. He isn't sitting up yet, but he has 3 more months to get that one down before physical therapy steps in. I'm confident that he will get it though! 

On another note...we are going through some very important "changes" and seeking God for some direction concerning some steps that we may need to take. Please be praying for us that we would have wisdom and CLEAR direction as to what we need to do. Change is never easy or pleasant but is sometimes necessary. 

Thursday, September 15, 2011

I saw this post from another Mom of a CHDer (congenital heart defect) and decided to steal it to share with you. ;)

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley 1987

Wednesday, September 14, 2011

Yesterday we got to celebrate the life of a little girl named Taylor. She was 11 years old and endured way more than anyone should ever have to endure in her lifetime. We met Taylor's Mom and Dad while we were in the hospital with Pax. We actually shared the surgical suite with them. Taylor had just had her 4th open heart surgery...it was supposed to be her last, but a couple days after she got home she developed a life threatening infection and was admitted back into the hospital and put on life support. She stayed there for almost 2 months. Josh and I decided to make their family our first family to adopt as part of our developing foundation, which we still have yet to name. A portion of the profits from the shirts that we sold would go to them to help with bills while Taylor was in the hospital. We also tried to take them food once a week and just provide general support and love to them. This past Friday a benefit was scheduled at their church and Josh's band, Manifest Destiny, got to play at it and we also sold shirts there. Unfortunately that morning Taylor went home to be with Jesus. (The benefit did go on and there were a TON of people there. Taylor's family was hugely blessed.)

I was so struck by this family and so touched by the life of this little girl that I had never "technically" met before. In the weeks that she was in the hospital I felt like I carried her in my heart so I was heartbroken when I learned that she had passed. Yesterday though, I learned all about her and her life and what she stood for. She lived life so incredibly full. Probably a lot fuller than most of us will ever live. Her life was full of joy and laughter. She was told she couldn't play sports or do physical activities, but she played pretty much every sport there was. She greeted each day with singing and smiles. After leaving the funeral yesterday I was so moved. I realized that we need to live each day with more joy. She could have chosen to be down and out about her condition, but instead she chose to be happy and live her life full. I need to wake up each morning with a smile on my face and joy in my heart and a song on my lips. I have so much to be thankful for! 

If you're reading this please take a moment and dwell upon what you have to be thankful for. Do your best to live today with a smile on your face and a song on your lips...even if you sing badly. ;) 

Wednesday, September 7, 2011

We got the laptop back!! Yay!! Hopefully I can get back to blogging more often now. Things have been going very well. Paxton is finally getting back to a "normal" sleeping and eating schedule. He's actually slept through the night a few times in the last couple weeks. We moved him to the crib in the boys' room so I'm sure that has helped. I know it's helped me sleep a little better. :) He's working on crawling still and sitting up on his own. He's gotten a lot better and I'm sure he will get there soon. It takes heart babies a little longer to master those movements that involve the core muscles because so much time is spent in the hospital laying on their backs and then after a surgery it takes a while to recover too. A "normal" baby would be spending that time working on skills like rolling over, sitting up and crawling. However, I think with Paxton he is still in the "normal" range so I'm not at all worried. Besides...we all learn these skills eventually right? :) Here's a picture of him working on his sitting up skills while sitting in a new high chair that we got him. He loves it!

This past weekend we decided on a spur of the moment trip to Branson for Labor Day weekend. We called Paxton's cardiologist and got the all clear to travel so off we went. We had a blast! The weather was absolutely gorgeous so we were able to take the kids outside to play and one day we even went to The Landing to go shopping. Pax got to play outside for the first time ever, which was adorable!

Here are a couple pictures of Pax playing outside and one of Josh and Kaiden on a little ride at the landing. I also included one of Dakotah on his first day of first grade.

Friday, September 2, 2011

Looks like I'm gonna have to blog from my phone for a while. Our laptop is "sick" and we don't know when we will get it back. :( To update from my last post...Pax is doing wonderful. He is now 4 weeks post op. He had his post op appointment on August 18th. It was a wonderful visit. It was the 1st time we have had an appointment that there were no immediate concerns. I actually heard the words "his heart looks beautiful". I really believe that God gave us the best cardiologist and surgeons. We asked for the best and that's what He gave us. Dr. Madrenero was so emotional about him. She said multiple times how scared she was before, during and after his surgery. She said that he truly is a miracle. She was so ecstatic about how well he did and how quickly he recovered. We don't have tO go back until September 20th! I love hearing that my kid is a miracle...especially from doctors. I love it when God looks good.

He has continued to improve each day at home. He is starting to sleep better and he's eating better. He's very very active...crawling all over the house getting into everything he shouldn't just like every other baby his age. It's so great! :)

Tuesday, August 16, 2011

As you know Pax came home last Thursday afternoon and is still doing great. Over the weekend we pretended we were on "vacation" and celebrated his homecoming by eating lots of ice cream and playing a whole lot of Mario on our wii. Josh and I actually beat the game...yeah I know...we are dorks, but we actually had a wonderful time. I can't remember the last time I have laughed so much or so hard. I actually laughed so much one of those days that I gave myself a headache. 

Now "vacation" is over and Josh has gone back to work and I'm back to the normal household wife and mom duties. I don't mind a bit though. The only thing I miss about the hospital is the sleep I got (Josh stayed at the hospital with Pax while I slept through the night at home.) and the cookies. :) Even though some days being home with 3 very loud and messy children can be rough I wouldn't trade it for anything. I love being here with them watching them grow and learn. On days that it becomes too much I just get to go shopping and get some coffee and I'm totally okay with that. :) 

Speaking of sleep...I miss it! I think Pax's body is still doing some adjusting. Heart babies tend to burn more calories than heart healthy kids do so I kind of understand waking in the middle of the night to eat, but I sooo want him to just sleep through the night. Can't he make up for the calories during the day and not at night? I'm actually thinking about trying to move him into his crib in the boys' room in the next week or so. At least that way I'm not waking up at every move he makes or every breath that I hear. We will see how that goes though.

Pax has a cardiologist appointment this Thursday. While he was in the hospital a doctor mentioned to Josh that they were going to do a heart cath on him soon. This was somewhat news to us so I plan to talk to his cardiologist about it. I knew that he'd probably have to get one again at some point...some day, but I wasn't expecting so soon. The surgeons did say they wanted to watch his aorta. Where they made the previous repair was starting to narrow again which was concerning to them, but it wasn't so bad that they felt they needed to do anything to it during his surgery a couple weeks ago. So please be praying this week for a good report. Of course I will update after the appointment. 

Happy Tuesday everyone!! 

Saturday, August 13, 2011

Paxton is home! The doctors released him late Thursday afternoon...one day early. :) He is doing fantabulous! He's still a little bit "fragile", but he's been trying to get back to his active self. Even when he was in the hospital he had been working on trying to roll to his tummy, but either didn't quite have the strength to do it or it hurt him. Not sure which. Yesterday though he was on the floor at home and rolled all the way over! He even tried to start army crawling again. He doesn't go as far or as fast as usual, but we were floored that he even tried and was happy on his tummy. It made my chest hurt just to watch! He's been sleeping and eating like a champ too! It's so amazing to see how quickly he is healing and progressing.

His only restrictions are that he has to avoid public places for the next 4-5 weeks...no sickness allowed!! And we can't pick him up under the arms...we have to scoop him up. That ones pretty interesting. Try "scooping" an almost 8 month old who weighs more than 18 pounds and is wiggly. :)

I will try to post some pictures of him at home sometime in the next few days. 

Wednesday, August 10, 2011

There's not too much new news for today. Dr. Barth came by this morning and told Josh that he looked great and that he could go home on Friday. By the way, here's a picture of the surgeons that operated on Pax. They truly are rock stars and God definitely blessed us with a couple of the finest and best pediatric heart surgeons in the country. And it makes it even better knowing that they serve God too. Dr. Nikaidoh always prays over each procedure he does and prays with the family beforehand. Even though we and sooooo many of you are praying for Pax, it's nice to know that his doctors area also praying for him and asking God to give them wisdom concerning his case.

In preparing to leave the hospital I can't help to think about what I'm going to miss about being here. The people are absolutely top notch...fantabulous! I'm also saddened to have to leave these behind...
Trust me, you'd be a little sad too. They are turtle cookies from the cafeteria and they are delicious! And don't even get me started on the rocky road cookies...oh me oh my! Unfortunately, for my own health and for my waistline it is best that I leave these behind. *sigh* 

Tuesday, August 9, 2011

I finally got to hold him today!!! 

Pax is continuing to do wonderfully! His liver has gone down significantly. Yesterday the doctors decided to "test" his liver by letting him eat whatever he wanted whenever he wanted to see how his liver would react. I have yet to talk to a nurse, but I'm guessing it didn't increase in size because they are continuing to let him eat as normal. They did tell Josh that it is still enlarged though, but I'm not sure by how much and I don't know any details about it yet. He is definitely breathing much much easier which is a great sign. (When the liver is too big it puts pressure on the diaphragm causing breathing difficulties.)

At 2pm he will receive his last IV med and then his "art" line (the line that is in an artery that they draw blood from. No drugs are given through this line.) will come out and then we will move out of the PICU and head to one of the "clean" regular pediatric floors. Yay! I'm sad to have to leave the PICU just because we have made so many friends here, but glad that Pax is well enough to not need them. He still has his central line, but I'm guessing it will also come out today since he is receiving no meds through it after 2 and he also has 2 other lines for "just in case".

I can't believe that 1 week ago he had his surgery. So much has happened in the last week! I'm hoping that I will get to hold him today too...it's been 1 whole week since I've held him. It's time for some Mommy cuddles. :)

Also, if you remember me mentioning a friend here on the PICU level named Taylor...she was our neighbor in the surgical suite that was on ECMO and not doing very well. I found out today that they are weaning her from the ECMO machine!!! Praise God!!! Thank you for praying for her. God is sooo good! 

Sunday, August 7, 2011

Today has been a new day. This morning his doctor came in and gave the clear to give him a couple ounces every couple hours. Wooo! He's been a MUCH happier kid since he's been able to eat some. He's been talking and laughing and playing all day. It's been so great! It's nice to see that he's feeling better. It's been hard to see him so unhappy this week.

They decided to start weaning his oxygen and nitrate so it should be gone completely in the next day or so. His liver has gone down a little, which is good. It's at least showing improvement. Praise God!! The swelling has gone down significantly...not too much more to go until he is back to "normal". I think that's all the changes today. God is so good!!

This afternoon he got to hang out with grandma and grandpa Coats while Josh and I took Dakotah and Kaiden out. We went to Build A Bear and to play at the mall and after that we took the boys to see Cars 2. Dakotah loved it...Kaiden, not so much. He is definitely NOT into movies the way Dakotah is...that's for sure. They are so opposites! Dakotah could sit through movies by 18 months, but he does NOT like music or concerts. Kaiden still won't sit through movies at age 3, but LOVES music and will go to Daddy's concerts and have a blast. I wonder what Pax will be like....

Saturday, August 6, 2011

Well the "easy part" of the hospital stuff has passed. I think the hardest part is when they come off of the vent and come off of the drugs, but can't eat or be held yet. It's so sad today. :( I'm happy that he was able to come off of the vent and got to have a bunch of tubes taken out yesterday, but they also stopped his pain/sedation drugs. So his throat is sore and he's having trouble breathing and is just plain miserable. He's just been crying today. It makes me so sad. Hopefully in the next day or so they will take out his central line so I can maybe hold him. He's a cuddler so he just gives me this look like "mommy, why aren't you holding me?"

He does get to move into a bigger room that has a shower and a tv which will be nice. And he gets a bigger bed. As soon as his liver goes back to normal size he will be able to eat.

So I would ask that you be praying that his liver go back to normal so he can start eating again and also that  it would be an easy transition from having all those drugs to not having any.

Thank you all so much!!

Friday, August 5, 2011

Paxton truly is my little miracle man. This week has been full of amazingness. His surgery was Tuesday morning. At 7:15am I had to hand him over to the nurses to go back for his surgery. It was insanely hard to give him to someone knowing what they were going to do. Sooo! Hard!! Anyways, it took awhile before they actually got him opened up and on bypass. There was a bunch of scar tissue that they had to work through from the first surgery so that's why it takes so long. After lunch they came out and told us that it was going to be more like midnight before they were done, but thankfully about 4:30pm they wheeled him to his room. He did absolutely beautiful during surgery.

Back story...as we already knew, he has Shone's Syndrome which consists of 4 defects. One of those was already corrected in January. What they repaired during this surgery has absolutely nothing to do with Shone's. For short, it's called SVAS and it's normally found in kid's with William's Syndrome and is never seen in an infant. The surgeons had no information or statistics on infants that develop this. It just doesn't happen. (After we originally met with the surgeons I did do some research and found a handful of cases involving infants. Unfortunately most of the infants either died during the diagnostic heart cath or during surgery.) The surgeons were very confused as to why his aorta developed this. There's just no known reason for it. They were very very hesitant and worried about doing this surgery. Making a long story short, they did not give us good odds. In fact, at one point during our meeting they told us they wished we weren't such good parents. It makes it easier for them to give bad news to parents if they aren't good parents. It sounds horrible, but it does make sense.

During surgery they saw that the material they used during the previous repair had gone haywire. It's a material called cormatrix aka pig gut. It's supposed to grow with and essentially become the tissue that you are attaching it to. In Paxton's case it definitely grew, but not the way it was supposed to. Instead of growing with the aorta, it grew out and around and inside of it causing the artery to be almost completely closed off. So because of that they decided to use a different "old school" material called gortex that doesn't grow. Without going into all the details of that, they are hoping that it will work just fine and they won't have to do anything else to it.

Because his aorta had such a strange reaction they sent off a piece of his aorta and a piece of the cormatrix for biopsy. We are still waiting on the results from the aorta, but the cormatrix immediately came back as inflammation. It didn't even recognize that it was a foreign material.

Post surgery he has been doing fantastic!! He was put in a special surgical suite room because they thought he would bleed out or have to be put on life support. Neither has happened! Praise God! His vitals have stayed wonderful! Today his chest tube came out and later he will come off of the ventilator. Wooo!!! I'm not really sure what the next step from that will be, but probably to start weaning from all the drugs and get back to eating.

I'm just so amazed at how God is carrying us through! He has been really showing Himself strong on Paxton's behalf. He has smashed the odds that were given to him.

Through all of this Josh has had a chance to connect with a couple other "heart families" that are here. We are actually sharing the surgical suite with one of those families. Their daughter is on the life support I mentioned earlier so please keep her in your prayers as well. I really believe that through all of this that God is going to open doors for us to be a blessing and minister to others that are going through this.

Thank you all for your love and support! You are amazing!

Friday, July 29, 2011

It's Friday!!!!

It's finally Friday!! The week has actually gone by decently fast, which I'm thankful for. Maybe today I will get to test out my new running shoes. Of course, I'm not actually going to run in them, but I am going to exercise in them. Maybe the running will come later when the weather cools down. I would LOVE to start running!

We have no big plans for the weekend except today we get our new batch of shirts in!!! Wooo!!! I'm excited to see them! I'm hoping the one I ordered for me will fit okay. It was really cute in the catalogue so we shall see.

I'm also waiting today to get a call from the surgeon's office with the official time for Pax's pre-op appointment and the surgery time. She said it would probably be the same time, but I need to hear an official time. My other plans for this weekend are to go grocery shopping, although I'm not really sure what all I'm going to get since I have no clue how next week will go. I do know I need to get all of our toiletries for the hospital though and I need to get my puzzle books. I have a thing about puzzle books during times like this. That's all I do...puzzles. I guess it keeps my mind off of what's going on in front of me. I'm going to try to stay calm this weekend and prepare myself as much as I can without going crazy. I think, more than anything else, I'm just not looking forward to seeing Pax afterwards. That's what freaks me out the most for some reason. Probably because the 1st time around he was already in the hospital. I couldn't hold or feed him and he was already hooked up to so many things it wasn't a huge shock to see him afterwards. But this time he is a happy playful little boy who is NOT in the hospital anymore. I can hold and feed him and play with him. He's not hooked up to anything right now so to go from him now to looking....scary...well that's a BIG change.

I'm so glad to have the peace of God though. I know that the Holy Spirit is my comforter and friend. He will not leave or forsake me and He will be my strength. I just have to focus on that. 

Monday, July 25, 2011


This morning was Pax's pre-op appointment for his surgery tomorrow. It took a couple hours, but he did so great! I absolutely LOVE the staff at the children's hospital. They truly are so wonderful! They always remember Pax and his story. They treat him like he is a member of their family. Anyways, the rest of the afternoon wasn't hugely eventful. We all just went out and ran errands until it was time for my Dad and Sharon to get to town. They were coming in to be here for the surgery tomorrow. Well we are sitting at dinner at Cheddar's and I get a phone call from the surgeon's office. Evidently the director of nurses advised the surgeons to wait until next week to do the surgery. She said that there were going to be a bunch of newer and inexperienced nurses on the schedule for tomorrow and thought it best, considering Pax's situation, that they wait until the best nurses were going to be on the schedule. I was sooo pissed! Not because they postponed it necessarily, but because they waited until the night before to look at the schedule and make that decision. I am glad though that someone caught it and was looking out for Pax. I just wish they would have done it a little sooner...and BEFORE my Dad and Sharon drove all the way here. After dinner we got some ice cream and then headed to Julie's to play games. When we got there my Dad told us they were going to go ahead and drive back home to Branson and try to come back up next week. This made me happy. I thought I was going to miss out on them being here to support me. I was really looking forward to having someone from my family be there with us.

Well, now we have another week of waiting and doing nothing. I am not a very good "waiter". It's not my thing. 

Sunday, July 24, 2011

Weekend Distraction

This weekend my brother, sister-in-law and my niece Madison came to town to spend some time with us before Pax's surgery Tuesday. I'm so glad they came because it helped to take my mind off of what is to come. They got to town Friday evening and then Saturday we all went shopping. Surprisingly this shopping trip went WAY better than when we tried to go in January. All 4 kids behaved beautifully! I got a pair of running shoes to replace the ones that I've had since I was a junior in high school. They are pretty sweet if I do say so myself. Sunday morning we got to dedicate Pax at church. I know this is going to maybe sound bad and not make sense, but somehow dedicating him had another level of meaning. It was definitely a decision for me to put him in God's hands and literally dedicate his life to God...no matter what happens. Of course, I'm expecting God's healing to be completed in Pax so that he won't have to deal with heart issues the rest of his life and he can declare God's amazingness the rest of his life. Anyways, Sunday night we attended the benefit show that my husband Josh put together for our family. It was at a bbq restaurant so basically for $12 people got their food and then listened to a couple bands play and then got to hear Josh's band play. Our church family was absolutely amazing in their support for us. There were 2 showings and both of them sold out, plus after the show they ended up buying a ton of the t-shirts that we had made.

I forgot to mention that Josh and I started a t-shirt company to help out with finances during Pax's hospital stay, but I think we are going to keep it going. It's doing really well and we think the designs are pretty sweet. :)

Anyways, back to my weekend story...after the show my family left. :( I wish they could have stayed longer, but it's always so much fun to get to see them! They did leave with the promise that they would be back in a month though so I'm holding them to it. 

Thursday, July 21, 2011

Follow Up With Cardiologist

Yesterday I took Pax for his follow up appointment with Dr. Madranero. Pax had been turning purple last week and just had some scary symptoms so I took him to the urgent care and then he ended up spending the night in the hospital. Long story short there's not really anything they can do until surgery to fix his heart. He's doing much much better. Not near as pale and hasn't been changing color quite as much. He's still not eating much, but overall he has improved. So basically today's appointment was pointless. We were in and out in no time. Now we just continue waiting until his surgery date....which none of us are looking forward to except to just get it over with. I continue to thank God though that He is basically keeping him alive right now. We are believing that God is continuing to work healing in Pax's body. 

Wednesday, July 20, 2011

The Last 5 Months

A lot has happened in the last 5 months, that's for sure! Paxton was released from the hospital on February 28th, which happened to be his exact 10 week birthday. Since then he has had monthly cardiologist visits. He has been growing perfectly and developing just like any other baby his age would. This is such a great blessing to us! The cardiologist has even called him "fatso" before. haha! He is currently 7 months old and weighs almost 18 pounds and is about 28 inches long.

March 2011: I took him to his first cardiologist visit about a week or so after his release from the hospital. His repair still looked great and he was doing amazing! At that appointment she did mention one little area about his aortic valve that had some pressure, but she said she wasn't concerned about it at that time.

April 2011: My husband Josh took Paxton to his 2nd cardiologist appointment the 1st week of April. I had just had my gallbladder taken out a couple days before so I had to stay home. :( At this appointment Dr. Madrenero (Pax's cardiologist) said the pressure had risen since the last appointment in March and that if it got worse by next month's appointment or even stayed the same that Pax would be getting a heart cath and that she would share the information with the other doctor's and with the surgeons at the weekly meeting they have. A couple days after his appointment we ended up rushing him to the er because his leg turned purple. He stayed overnight in the PICU, but was sent home the next day. He had great vitals and perfect oxygen sats and they couldn't find any clots. So no reason was given for why his leg kept turning purple.

May/June 2011: Josh and I both took Pax to May's cardiology appointment because we knew there was a chance it wouldn't be good news. At this appointment we were told that the narrowing and pressure was worse. So we scheduled a heart cath for the 26th of May and then we would go from there. Well that appointment didn't happen because Pax, my other 2 sons and I all got sick. Paxton actually ended up in the hospital for a couple days at the first part of June because of it. It took quite a while for us to finally get better. He ended up having his heart cath on June 28th. At that time we were told that he had supravalvar aortic stenosis. We didn't really know what exactly that meant. We were just given pictures of the narrowing and told it would have to be surgically corrected soon.

July 2011: On July 8th we met with the surgeons and were told at this appointment that SVAS is usually seen in kids that have William's Syndrome and they are usually at least 3-4 years old. (We are still waiting on the results from the William's test, but we are all pretty sure he doesn't have it.) It is EXTREMELY RARE for it to occur in a baby. The statistic that I later found on the internet was .05% of CHD kids get it. They were very confused and concerned because they don't understand why he developed it or why he's even still alive. They said he should have died during the heart cath and that even just sitting there she wasn't sure how blood was able to get through. I should remind you that he shows no outward signs or symptoms of any heart issues. THANK YOU JESUS!!

So to make a very long story of the appointment shorter, surgery was scheduled for July 28th. Whew!

Hopefully you were able to follow all of that. :)