the rest of the story {the FUN part!}

Wow.  I am so overwhelmed by the amount of support we have recieved after my last post.  So many emails, comments and prayers were sent our way, and I appreciate it so much.  Many of you asked if we had thought of getting a second opinion, and honestly, I hadn't until I thought about it some more (thanks to all of your suggestions).  We have always been very confident (and still are) in the University of Iowa Children's hospital in Iowa City.  We believe the doctors there are some of the best in the nation.  However, I intend to do some research on Andrew's particular condition, and believe me, if it leads us somewhere else, we will look into it.  I refuse to hear the words "there is nothing more we can do."  Not when it comes to my baby.  We haven't heard those words yet, so until we feel a pull somewhere else, we are staying put for now.

Now, onto the rest of our time in Iowa City.  We stayed at our favorite hotel (for those who wonder, because I have been asked...it is the Comfort Suites!) they have the neatest pool with a 100ft. waterslide.  Andrew just could not get enough of it.

Even though the water was pretty cold...

(Again, proof that I got in the water, AND went down the slide too!  Ha!)

Daddy got in on the fun too, but then we learned that Andrew was big enough to go down all by himself, so he jumped at the chance!

After coming down on his tummy and backwards the first time (just like he did in Wisconsin Dells!) he soon figured out how to stay upright, and he was so proud of himself!

He loved how the water pushed him coming out of the slide.  Once he got down, he'd just play like this for awhile before going straight back up again!

He also had fun jumping in the water to daddy.

We had to laugh because Andrew ate 2 meals this night!  We all went out for dinner at our favorite, Texas Roadhouse.  Then after a long swim, Ga Ga and Papa took Andrew out to IHOP, which is right next to the hotel.  This was about 10:00pm!  We figure there was also no harm in letting him stay up late since he'd be sleeping the whole next day! (Oh, and don't you love how we let him wear his pj's too?  Ha!)

 My mom said he ate a TON of eggs and all his pancakes!

We were trying to squeeze as much food as possible into him since we knew he was second case the next day and wouldn't be able to eat.

Look at him shovel it in!  Ha!

Watching one of his new movies with Papa (around 11:00 now!)

The next morning we got to take our time a little bit more since he wasn't first case.  I felt incredibly guilty sneaking down to the hotel continental breakfast to eat before we left.  They have the best waffles that Andrew loves.  I could have cried sitting there eating it.  When we got to the hospital they had the nerve to roll the food cart right into the waiting area.  And there was a kid eating a cookie right in front of him.  Seriously?  I get that not everyone can't eat, but it just seemed so unfair.

Luckily he was entertained!  We are all getting such a kick out of him lately because he LOVES my new iPhone.  He is always wanting to play games on it and it totally entertains him.  This is one of the huge reasons I wanted an iPhone, and it did not disappoint!  The best was when mom and I took both kids to the mall the other night and this entertained him almost the whole time so we could shop!

He was being so silly, even though he was super hungry.  We went up to the library and museum and looked around and he was playing dress up!  Ha!  He thought he was funny, giving himself hair and "dressing up like a girl!"

When we finally got called in for the cath, we were waiting to see the doctor and Andrew was completely fascinated with this model of a heart.  I think he thought his heart was heart shaped (didn't we all think that at one point?)  Ha!

I thought it was so neat to show him the parts of his heart and what it actually looks like.  This also entertained him for a while!

Andrew begged Ga Ga to go in the cath lab with him when they put him under, but she didn't think she could handle it.  I told her she couldn't cry in front of him or it would scare him!  So he settled for mommy going in with him, but he wasn't very happy about it!  He gave Ga Ga a huge hug and leaned his head on her and said "I'll be back," in the saddest little voice.  I think that made Ga Ga cry even more than if she had gone in with him!

So I went in with him and he was so good.  He got to hold the mask himself this time and the cath lab nurse asked him how it smelled, so he put it right up to his face.  He sat on my lap and just waited to get sleepy while I kept telling him how brave he was and how much I loved him. 

Trust me, we don't laugh too much when Andrew is in the cath lab, but I had to chuckle at all of us sitting there waiting and working on our computers!  Haha!  I think people that came in thought we were nuts!

 The cath lab is right in this office where we were waiting, and we never like to get too far away so we usually don't leave during his caths. Once in a while we grab a quick bite to eat but it is always right after they take him so we have some time before they get started.  I like knowing Andrew is as close to me as he can get.  It is funny, they always tell us to get out and about, go to the gift shop, grab a bite to eat, etc.  I think they try to get rid of us!  Ha!  Dr. D laughed and said there are two extremes- he had a mother one time leave and go to the mall and get drunk!  Omg!  Who does that??  I'm proud to say I am the opposite extreme (although I wouldn't pass up a drink!  Ha!  But I'd sit right down on the floor by the door if they'd let me!)

Most of the pictures of Andrew in recovery I posted in my last update, but here is another one.  The first thing he wanted was water, but of course they wouldn't let him have it right away so he had to settle for ice "ships!"  Like I explained already, Andrew woke up very calm and didn't fight us this time.  He was pretty sad right afterwards, into the evening and even into the next morning.  He only perked up after all his tests were done and he could go to the playroom.

When we got back from recovery and into our room, we were so surprised to see this sweet person waiting to see us!  This is Jamie, she was Andrew's best nurse on the floor after his surgery in March.  We loved her so much.  She was our night nurse, which is so important.  I can't even explain how great she was to us and to Andrew during those rough nights after his surgery.  He was not a happy camper, and she always cheered us all up.  She is no longer working there (SO sad!) but she just passed her test to be a nurse practicioner and is getting married so she is moving to Minnesota.  We will miss her!  She loved this little dolly, and I told her I wish she lived closer so she could babysit!  Ha!

Andrew was pretty out of it when she was here, but she left him a sweet note on his board!

This moment was so special to me.  My sweet daughter watching over her big brother.  She was so interested in what was going on and just staring at her brother.  These two already love each other so much, it is so amazing.  I know Kerigan is going to grow up having an appreciation for things, because she will have been exposed to so much by watching her brother go through all of this.  They are so blessed to have each other.

In my last update I also mentioned Andrew having some genetic testing done.  He had his regular echo the next morning, but he also had a whole string of other tests done.  They did a kidney ultrasound and took spinal x-rays.  We have not heard any results, but like I said, I am not worried.

Smiling because he was all done and ready to hit the playroom!

Well, after he finished his pancakes...

I thought his Mater slippers were so cute sticking out from his tray!

He wanted to get dressed in his Batman jammies and I made him walk to the playroom.  He wasn't thrilled about walking, but I told him they wouldn't let him go home if he wouldn't walk!  So he walked all hunched over like a little old man the whole way!  Ha!

Found lots of new toys in the playroom to play with...

While daddy stayed back with this little sweetie.  This picture sort of gives me the creeps though, because I think I have already seen one child of mine in a hospital bed... I hope I never have to see this for real!

But she was looking at her daddy so sweetly!  It was sure a different experience having her along with us this time.  I wasn't sure how it would all work out, but we made it work, thanks to Ga Ga and Papa!  They just stayed in our hotel room an extra night and took Kerigan back with them while Craig and I stayed with Andrew.  It was my first time being away from her overnight, and it wasn't easy.  It was the first time I really felt torn between my two children.  I wanted to be with her so badly, but I knew Andrew needed me.  All I could do was hope she'd understand.  And it's not like I was worried she wasn't getting spoiled to pieces and loved on enough!  Ha!

Andrew got asked to go to the playroom upstairs for a dinosaur craft with some other kids, which was nice.  I thought it was good for him to see other kids with IV's in their hands like his.  He wouldn't use his right hand because of the IV, even though it wasn't hooked up to anything!

This is Andrew's miracle worker, Dr. Divekar.  We just love this guy!  He really has a positive attitude, but he also tells it like it is (which was hard to hear this time, but he didn't leave us without giving us a glimmer of hope).  I always appreciate his sense of humor and the connection he makes with his kids.

And by the way... this is why we go to Iowa City for all of Andrew's surgeries and procedures...

I had to laugh as we were packing up to head home.  Seriously?  We were here for one overnight! 

We were just happy to be headed home!

When we got home, we all crashed... well...almost all of us!

We are glad his cath is over... but I now realize I can't say, "Whew, well we got that over with!"  because there is always going to be another one.  We head back this spring to see how things are looking.  Between now and then, we thank you for praying for Andrew's tiny arteries to grow.  Your prayers are so important, because really, there is not much else that can be done.  Thanks again for all your support and prayers during this difficult experience. 

If you missed my update on the results from his cath, you can read it here.

the details

*Note:  If you are here from Kelly's Korner, this update is the big story, but these are a couple of follow up updates... as you will see, it's been and continues to be quite a roller coaster!

God's Work
Perseverance
Where are we now?

I am sorry it has taken so long to update.  I know everyone is waiting to hear the details, and honestly last night was the first chance I got to just sit down once the house was quiet, and think.  We did make it home on Friday afternoon after a long couple of days and lots of new information.  To be honest, I wasn't ready to type out more details much earlier than this, because I needed more time to process, and piece together the bits and pieces of information we got, including the things I may have blocked out because, let's face it...  I didn't want to hear it.

So, I am still not really sure where to go with this, but I know I have to start somewhere, so unlike my high school writing classes, I didn't make an "outline" ahead of time, even though I think I should have, because it might have helped me organize my own thoughts a little better.  I'll intersperse pictures from the cath so it's not so long and boring to read!  Ha!

I am going to start with the good news (the part I choose to focus on).  Obviously, the main thing was that Andrew got through the procedure like a champ, just like he always does.  Dr. Divekar was able to place a stent (even though that wasn't what we wanted, at least he was able to do it, and placed it right where it should be.)  Andrew's pressures started out about 60 when we came in, and came down to 40 when we left (and don't ask me what those numbers mean, because I honestly have no idea).  All I know is that lower is the goal, so there has been some improvement already. 

Now I'll jump to the part where Dr. Divekar came out when he was finished and took us back to the small room next to the cath lab to show us pictures on the computer.  My baby was still beyond those giant, steel double doors, and I have to admit that I only heard parts of what he said here... mainly because #1, I couldn't take my eyes off that door waiting for my baby to come out, and #2, I could tell that I wasn't going to like what he had to say.

He showed us the right side first- the PA's, lungs, etc.  From what I understand, he is happy with the way things look and saw no need to do any interventions on this side (another positive).  However, the left side was significantly different.  Shocking to say the least.  The branch pulmonary arteries (coming off the left PA) were as thin as a strand of hair at the base, then they got larger (but not big by any means) the further they went out to the lungs.  This was the first surprising thing that we saw, because we always thought it started out bigger, and got more narrow towards the lungs.  Not the case.

He couldn't place a stent further down the left PA because it would have blocked the potential growth of these hair-like arteries.  And he can't stent them because they just aren't big enough, and it could potentially cause more damage. All he can do is keep expanding the stent he placed to increase the blood flow through the arteries to give them a chance to grow.  Andrew will continue to frequent the cath lab so this can be monitiored.  If things don't improve over time, he will have to get more risky, involving further stents and ballooning the hair-like arteries.  So basically, these small arteries are building up the pressure on his right ventricle because the blood decides that there is nowhere to go so the right side is compensating for the left.  And here's the part where I'm still a little foggy...

Apparently, Andrew's body doesn't compensate the way a "normal" one should.  Since his PA's are choosing not to grow, even after his surgeries and interventions that have been done thus far, doctors are thinking there is some underlying genetic reason for all of this.  Here's the part where he also brings up the hearing loss, coupled with his complex heart defect.  Evidently, this is a sign that points to a genetic issue that they all of a sudden want to try to get to the bottom of.  At this point I become annoyed because I am not sure why this hasn't been brought up before.  We saw genetics when Andrew was a baby coming out of the NICU, but it was always chalked up to an isolated heart defect, an isolated hearing loss, and just an all around "fluke." (We like to think that my dad is leaving marks on my children to remind us that he is with us... as he died of heart problems, and he also had a hearing loss...and Kerigan's heart shaped birth mark is no coincedence either. Come on, dad!)  So I ask what difference it makes if there is a genetic issue... at this point I'm thinking, who cares?  What is it going to change?  What's done is done.  Apparently, they get concerned because if there is something they are missing, there could be more problems in the future and they need to know how to treat him.  For example, many kids with hearing loss also have kidney issues, so they wanted to do a kidney ultrasound and multiple spinal x-rays (again, why this was not done a long time ago... I am still unclear.)  

Quite frankly, I do not think this is something genetic.  And if it is, I just don't believe there are going to be more problems in other areas for Andrew.  I truly believe that God and my dad worked together to send this special little boy to us.  Heart defect and hearing loss included in the package deal.  And it's as simple as that.

The other thing that was brought up sort of took my breath away, but at the same time was not a surprise.  Putting Andrew on oxygen.  I know.  Deep breath.  Just at night and "quiet" times throughout the day, but still.  This therapy has sometimes been linked to helping with growth of arteries, although it is certainly not guaranteed to work.  I say, if there is any chance that this could help him, we intend to try it.  Somehow though, the thought of hooking my baby up to oxygen at night just seems a little scary and daunting.  Especially for an active little boy who behaves no differently than his healthy peers.  To me, it will just be a reminder that he is not a "normal" little boy even though he appears to be.  Beyond the surface, there is so much more going on inside his little body.  I just have to keep reminding myself that it is not because he needs it to survive (although long term he does need this to work) because if the PA's don't grow...

I don't want to go there.

(But I'll tell you briefly because people ask and want to know... long term, his heart can't go on like this with the pressure this high.  Sure, he's fine right now.  He can live like this right now.  But I like to think that my son will outlive me... and that's why his PA's need to grow.)

The doctors have told us there is no medication that can help this problem.  Nothing that can help make the arteries grow.  Why do I feel like with today's modern medicine there should be some magical drug that would just fix this so we could all go about our lives and not have this weighing us down every.single.day.  Because I do think about it.  At least once a day.

I'm not gonna lie.  I'm worried.  I'm worried that my precious son has a medical condition in which no surgery, no medicine, nothing but the work of God can heal him.  Sure, the doctors can do what they can.  But let's face it.  There's only so much they can do.  And I sorta feel like we've already been there-done that several times before this.  When do our chances run out?  When do we go in and they tell us... this is it.  There's nothing else we can do.  All I can do is pray that doesn't happen for a long, long time.  And in the meantime?  We intend to live every single day to the fullest.  To enjoy the little things.  Treasure the times we have together, because we know that each day is a gift.  One that we are so blessed to receive.  The only one I ever care to receive again.  My perspective has changed.  Things just aren't important anymore.

I hate this life for Andrew.  As he gets older this gets harder and harder.  He is becoming wise to the fact that there is something "different" about him.  His behavior this time made me realize that he now understands so much more than I give him credit for.  He was sad.  Just plain sad.

He used to cry and scream and fight the mask, yank his IV and tubes out, put up a real fuss.  But this time?  He just laid there and stared up at us with his big, beautiful eyes.  And they were sad eyes.  And every once in a while his lip would quiver, and a silent tear would fall.  But he never lost it.  His bravery amazes me.  I think he knows and has accepted that this is his life, and he is sick.  I think he's worried too.  He looked up at us several times and said "I wanna be better."  So on top of everything else, I now need to come up with a repertoire of responses in my head to tell him when he needs to hear it.  This "your-heart-is-special" thing just isn't going to cut it much longer.  He wants to know more.  He needs to know more.  He understands that there is more.

And since we learned that this most definitely wasn't his last cath, or even his "close" to last one... he's going to learn pretty quickly that this is all part of his journey.  I guess I am just grieving the fact that I had HOPE that after today, we would learn that the stent would fix everything.  That we could suddenly be told that he didn't need another cardiology check up for another year.  Heck, we'd even take 6 months between check ups.  His whole life we've never gone more than 3 months without seeing cardiology.

And it looks like that's not going to change anytime soon.

Please don't think that I am complaining.  Because I know it could always be worse.  I have seen worse. I am not oblivious to the world around me.  We have been very blessed to have Andrew be as healthy as he has been for so long.  Dr. Divekar wasn't pessimistic about this (well, the first day I thought he was, but after talking to him again, I was more reassured).  He said if Andrew was a lot older he would not have much hope, but since he is still so young, he believes there is a chance things can still improve for him.  I just think that I am allowed to have moments where I can still think that this sucks.  Everyone is always telling me that I am so strong.  Well, here's my moment.  That isn't always the case.

Whew.  I think I got through mostly everything.  And if not, I'm too emotionally exhausted to write anything else.  Thank you to those of you who actually read the whole story, so I don't have to explain it a billion times.  It is so much easier to write it down and have our family and friends just read it so they know what is going on.  They know our hearts.  Then when we talk, we can actually go beyond the basics.  I love that.  So thank you for sticking with me.  In my next update I'll write about the rest of our trip and the good times we had, because we did have some fun.  And to make up for everything else, we like to show our Andrew a good time!  And despite everything he's been through and has yet to go through, this kid knows how to party!

Thank you for covering us in prayer.  Please continue to keep Andrew in your prayers every single day. He needs a miracle.  And we know it's possible.

Jesus looked at them and said, "With man this is impossible, but with God all things are possible."

Matthew 19:26

 Click here to read about our heart story from the beginning.

cath is finished

Sorry for the delay in updating... it's hard to update once they tell us he's done we sort of rush around, get our things together so we can get up to recovery so we are there when he wakes up! It is all very rushed.

Dr. Divekar presented a lot of information to us regarding the severity of his very narrow pulmonary arteries. He did end up having to place a stent, but apparently he isn't expecting it to help lower the pressure like we thought. It is just one piece of the very complex puzzle that is Andrew's heart. The hope would be that this stent would assist by increasing blood flow, which in turn should make the arteries grow over time. But our past experience with this is....those stubborn things don't want to grow. Apparently the problem spots are the smaller branches that stem off the larger left pulmonary artery. They are as thin as a hair strand (we saw it on film today). Basically there is not much he can do to get those to grow. So he couldn't tell us that this would work. Basically, there is no "fix all." We just have to play the waiting game again and see if they grow over time. And looks like we'll be back here in another 6 months for more balloons/stents. Like we learned a long time ago.... this journey will never be "over."

I'm too exhausted and overwhelmed with information to type out more details right now. We are processing everything. I'm hoping my head is more clear later tonight or in the morning to give more explanation. The main thing is, Andrew did great and the procedure went great today.
Thanks for all the prayers- and please keep them coming. He's going to need them!

Cath has begun

We got to Iowa City last night and had a great time at the hotel. We went out for dinner at Texas Roadhouse and then went swimming. After swimming, Ga Ga and Papa took Andrew out to IHOP for another meal! Ha! We wanted to stuff him so he wouldn't be hungry this morning. Poor thing. Since he was second case today, we had to wait for another cath to be done before they took him back. He only asked to eat about 3 times, and he handled it okay when we told him no. He also handled it well when they rolled the food cart in the waiting room and another kid started eating a cookie right in front of him. Yeah, I wasn't too happy about that!

He was very uneasy about coming to the hospital. He remembered being here for his surgery. He cried in anticipation of everything, before they drew labs, and before he went in the cath lab. The sweetest thing of the day was when he begged Ga Ga to go in with him while they put him under (Ga Ga didn't think she could handle it, so he settled for mommy!) so he just gave Ga Ga a big hug and said "I'll be back..." in the saddest little voice. Then he just burst into tears when we took him into the lab. He didn't fight the mask too much, mainly because they let him hold it himself, which he liked. They asked him how it smelled, and the trick worked like a charm! Ha! He put it right up to his face and we all just talked to him and his big eyes looked up at me. I know he didn't want to be there. He had asked to go home several times. I told him the doctors were going to make him sleep for a while and he said "No, let's just go home and sleep, okay mama?" Oh how I wish...

We've gotten a few updates, they have begun to balloon the left pulmonary artery. We are praying that it stays open so a stent won't be needed. Will keep you updated as we get more news.
Thanks for all the prayers! We can feel them.

doctor andrew

My best friend Alissa came over last night and brought Andrew this doctor dress up outfit.  He LOVED it!  (Alissa was practicing by feeding Kerigan for me because she'll be having her sweet baby boy very soon!)  Anyway... Andrew put the gear on and brought us all to his "office" for our doctor appointment.  He got out his doctor's kit and listened to our hearts, looked in our ear, made us say "Ahhhhh," and then gave us a shot.

Oh, how I wish it was just that simple.

We'll be heading to Iowa City this afternoon.  I told Andrew this morning about his upcoming stay at the hospital.  He didn't seem very thrilled about it, which I can't blame him.  Although he forgot all about the hospital when I told him about the hotel with the swimming pool and slide we'll be staying at tonight.  I also promised him a new movie or two! I assured him he wasn't getting another "owie" (where his scar is), but that doctors were going to fix his heart in another way.  It is so hard to explain to a four year old the concept of heart defects.  All we can tell him is that his heart is very special. 

He just has no idea how very special it is.

Andrew is second case tomorrow.  This means we don't have to rush around in the morning (there's another cath before his), but it also means that Andrew can't eat anything for a loooong time.  I'm not sure how we're going to hold him off that long.  Another hard thing to have to explain to a child.

These were my cuddle bugs this morning.

We stayed in bed together for a long time.

The next couple days I'll just be dreaming about doing this again soon. 

Very soon.

Thanks for all your prayers.  I'll be updating next from Iowa City in the morning once they get started!