A blessing is a blessing, even if it is hard to see

Whew!  Twins will definitely keep you busy, especially when there are tummy and heart issues thrown into the mix.  Sometimes it is hard for me to slow down and recognize the blessings around me.  Today, I am going to do just that.

I am a big believer that everything happens for a reason.  I don't think that things happen by chance, but by divine reason.  I believe that God has a very specific plan for my life and my family.  With this being said, my time in the hospital with Rowan was overwhelming, and I often felt as if I were in a dream.  At times, I found myself asking, "is this really happening to us?"  Here we had been through five scary weeks of bed rest and contractions, three difficult weeks in the NICU, and terrible reflux to boot.  What could we possibly learn by going through all of this?  The answer is, a lot!

Here is my lesson:  I. Am. Blessed.  Even when blessings are hard to see, they are there, just waiting to be found.  It's the finding part that can sometimes be tricky, but once you do, it's more than worth any pain that you went through to get there.

This is how God has blessed me in just the last week.......

1).  During a time like this, you need love and support.  We had it!  We are blessed with a supportive and loving family, who will do anything and everything to help us make it through.  Our parents took turns keeping Jack for us while we were with Rowan at the hospital, and our siblings called and prayed for us when we needed it the most.  Our friends also called or texted to ask how Rowan was doing and let us know that they were praying as well.  Our sweet neighbors even got our mail for us while we were gone.  Knowing that others were praying, gave us the strength to keep going.

2).  We are blessed with an amazing pediatrician!  She recognized the need for Rowan's care right away and sent us to the best place possible.  Throughout the week, she called to check up on him and let me know that she was praying for us.

3).  We are blessed with a minor, fixable heart condition.  While in the CICU, we met a mom whose daughter had been there since birth.  Her daughter has a very serious and complicated heart, which required surgery immediately after her birth.  She has been in the CICU for almost four weeks.  Her mom hasn't even been able to hold her yet.  Can you imagine going four weeks without holding your baby?  To make matters worse, the mom lives in another state and has been staying away from her husband and son at the Ronald McDonald House this entire time.  Her daughter will also need several more surgeries throughout the first year of life to correct her heart.  Everywhere I would look at Egleston, I saw other babies who were far, far worse off than Rowan.  Those families could have been us.

4).  We were not only blessed with a nice place to stay while Rowan was at Egleston (The Ronald McDonald House), but we also were blessed with a good night's sleep.  When your child is hurting and  you are running ninety miles an hour, the Ronald McDonald House is like a safe haven.  This was a place where we could go at night and simply breathe.  While we were there, we met many families who will have to stay for several weeks, some even months, while their children undergo treatments.  We were there for three nights.  Blessed.

5).  We were blessed with time as a couple.  Even though this was scary, we had each other.  Jody was able to get off work and I am still on maternity leave, so God knew what he was doing when he timed this little event in our lives.  :)  We were able to get through this together, and it has made us stronger not only as parents, but as husband and wife.

6).  We were blessed with the most perfect hospital possible for our little boy.  The doctors at Egleston were wonderful, and we always felt confident that they were doing the very best that they could for Rowan.  It gave us peace of mind to know that he was in good hands.

Now that we are home, I can't deny that it doesn't get scary at times to have a little boy with a hurting heart.  However, it's these blessings from above that remind me of my Lord and Savior who is always in control.  In our living room, we have a framed print that says, "The Will of God will never take you were the Grace of God will not protect you."  It's no coincidence that it's the boys favorite thing in the house to stare at.  :)            

Another blessing--seeing my baby boy smile!

My sweet boy checking out his mommy

Taking a short break from the hospital to come home and see Jack (and his cute little monkey bottom)

Beads of Courage

Beads of Courage.....before yesterday, I had never heard of them.  Today, they serve as a source of hope, and a reminder that one day Rowan can look back on this time in the Cardiac ICU and be proud of what he has made it through.

Each patient in the CICU gets a necklace with their name, along with several beads that correspond to their treatment.  Each bead represents a unique experience that Rowan has made it through.  These beads are designed to remind Rowan (and his mommy and daddy) that his story is not about what is happening to him, rather, it is about having the courage to take control and face whatever life throws his way during this difficult time.  No matter what, he will always be little Rowan and nothing can change his fighting spirit.

Here are some of Rowan's experiences that we are proud to have made it through:

Glass Star:  A stay in the CICU
Magenta:  An ambulance ride
Purple:  An infusion of heart medication
Yellow:  Inpatient admission
White:  Learning to tolerate and take new heart medications
Light Green:  X-Ray and Echocardiogram
Glass:  Extraordinary Experience (having to have emergency intervention and strong medication to stop  two serious episodes of SVT)

Of course, with every good story, there is a beginning.  This is ours:

In the wee hours of Thursday morning, Rowan seemed a little fussier than normal.  At first, I didn't think too much of it, because he has just had his two month shots on Tuesday and had been feeling pretty crummy since then.  However, around 2 AM, he stopped taking his bottle and would scream if we tried to feed him.  I walked every inch of our house throughout the rest of the morning trying to get him to calm down.  As soon as his pedi's office opened, I called and let them know what was going on.  The nurse thought it sounded like symptoms of an oral thrush and said that we could come on in.  At our appointment with his pedi, I explained what had happened, and just as a check up routine, she listened to his heart.  Immediately she stopped, got up, and told us that she would be right back.  I knew then that something was very wrong.  As it turned out, Rowan's heart was beating so fast that she couldn't even count it.  When hooked up to a machine, we found that Rowan's heart rate was over 300.  She immediately called the cardiac pedi at the Gainesville Sibley Heart Center.  We were rushed over there, where the doctor promptly greeted Rowan with an ice pack to the face.  Apparently, by covering Rowan's entire face with ice (which looks horrible, by the way), it induces a reflex that stops his heart from beating out of control.  Within a few seconds, his heart rate when back down to 130.

We then learned that Rowan has a heart condition called SVT, which causes the heart to short circuit and start beating out of control.  When they first did an echocardiogram of Rowan's heart, one section looked very swollen, and he had some fluid above his stomach.  This was all caused from the SVT.  We now know that Rowan has probably had this for awhile now.  The tricky part is that it will only be picked up on when he is having an attack.  For example, we have been to the doctor with check ups and reflux issues five times before this, and his heart rate has always been normal.

Our Gainesville doctor then called Egleston and an ambulance was sent to pick us up.  I rode with Rowan, while Jody followed behind.  Rowan did very well until we were about 3 minutes out, and then he had another attack.  The lights immediately turned on and we went zooming through rush hour, Atlanta traffic.  It was scary for me, because I couldn't see into the back of the ambulance where he was, but I could hear what was happening and knew that he wasn't doing well.  It also freaked Jody out, because he was left behind as we rushed down the road.  As it turned out, Rowan had started to turn grey and stopped breathing, so they had to give him an emergency heart medicine that literally puts the breaks on the heart (which as you can imagine, was also painful for the little guy).

Once at the Emergency Room, Rowan had another episode and had to be greeted with another pack of ice to the face.  We were then transported to the Cardiac Intensive Care Unit, and we have been there ever since.  While in the CICU, Rowan has had several more attacks.  On the first night, he had to be given the emergency medication two more times to break the cycle.  The next day, he also had several more attacks, but he was able to break the cycles on his own.  Today, he had two more attacks, but they were short, and he broke them on his own as well.  The doctors also did another echocardiogram and found that Rowan's heart had begun to repair itself from the damage that it took during the attacks.  His heart is no longer swollen (Praise the Lord!), and he no longer has fluid around his stomach.

Right now the doctors are just trying to find the right combination of medications to stop the attacks completely.  The goal is to make it a full 24 hours without an attack, so that he can move to the Step-down Cardiac Unit.  Once there, we will begin taking care of Rowan on our own.  We will be trained on how to check his heart rate with a stethoscope and give him his new heart medications.  We hope to be on our way home by at least the end of the week.

Although this has been such a scary time for us, we are very blessed that his condition is not any worse.  As the nurse told us tonight, Rowan's case is actually mild compared to many babies with SVT.  Most babies start to lose control of their blood pressure and oxygen levels, but Rowan has never had a problem with those.  The hope is that Rowan will outgrown this condition within a year or so.  For some babies it takes longer.  If for some reason he still has it by the age of 7 or 8, he would have a procedure done where the doctors would burn the pathway in the heart that is causing it to beat out of control.  All and all, Rowan is expected to live a normal happy and healthy life.  We will just be having many check-ups with our Cardiologist in Gainesville for the next few years.  :)

If there is one thing that Jody and I have learned about our son through this experience, it is that he is one tough little boy.  Rowan can handle anything that life throws at him, many times better than his mommy and daddy.  We are so proud of him and the courage that he has shown at just 9 weeks of age.  We'll make it through this, and we'll all be far better for it, too.

This is Rowan's bed, along with his Curious George.  When Rowan was being wheeled up to the CICU, he had his eyes wide open and was just looking around at everything.  His grandma has always called him Curious George, because he can't go a minute without finding out what is going on around him.  The nurses loved it and couldn't believe his big, expressive eyes.  :)

This was taken on Rowan's first full day in the CICU.  Poor little buddy wasn't feeling too well.....

Ahhhhh, much better!  Tonight Rowan got to get his oxygen tube removed!  Now maybe he will be able to get a good nights rest.  :)

        

Acid reflux, you are not our friend

Want to know what life has been like for the Wilson's over the past few weeks?  Well, this picture about says it all!  :)  Yes, our sweet little boys are battling a not so sweet problem--reflux.  For us, it can strike here, there, and everywhere in between!  This unfortunate spit up happened in the middle of our 2 month old photo shoot.  It hit poor Rowan out of the blue and little Jack threw his arm up like, "Ewww, gross!"

For preemies, acid reflux tends to be a bigger issue than most full-term babies.  Jack and Rowan have it so bad that it often comes out through their nose, causing them to scream and choke.  It is so scary to see this happen!  The reflux also causes acid to burn their throats after they eat, which makes them very upset and fussy after each bottle.  We have had many sleepless nights together as the boys try to battle this yucky stuff.  It is the worst feeling in the world to know that there is not much we can do to help them.

Right now the boys are on reflux medicine.  For the past few days, we have also been thickening their milk by adding oatmeal, and so far, it seems to have helped a little.  Last night they slept for 5 hours straight, which is a huge accomplishment for them!  Although we already have inclined rockers for them to sleep in, we also purchased Nap Nannies.  These are little foam wedges that often help babies with reflux.  So far, they love them!

Here are the boys chilling in their Nap Nannies....complete with rice socks, which were recommended by their pedi.  :)

Rowan

Jack

For now, we are all just getting by on lots of prayers and patience!  We know that this is something that will get better with time, and the boys are just going to have to outgrow it.  One day these struggles will just be a distant memory overshadowed by many, many other great ones.  :)

A walk in the park. . .

Last weekend, the boys and I enjoyed our first ever walk in the park....well, stroll in the park at least.  Yes, Jody and I decided to brave the double stroller and get the family out of the house for a bit.  Before we headed out, we realized that it might be a good idea to actually get out the stroller and you know, see how it works.  After a good twenty minutes and some healthy frustration, we finally figured out how to attach the car seats to the stroller.  Success!

Then of course, we had to undo the car seats so that we could get the boys strapped and loaded in the car.  This, coupled with the fact that our double stroller seems to weigh about a thousand pounds, had us sweating before we even pulled out of the driveway.  As you can imagine, by this point we were only slightly beginning to question our need for fresh air.  :)

We decided to go to Pitt's Park since it's not too far away and has nice, flat land--as neither one of us are in any shape to push our baby limo up a hill.

So, here we are, enjoying our first time at the park (or outside, for that matter).

  

These were taken during lap one of two, although I had planned on doing several more.  After lap two, I was convinced that we were all about to come down with a mad case of the West Nile Virus, so we had to leave.  Is it just me, or do all new moms struggle to maintain a healthy balance between a fierce protectiveness and flat out paranoia?  (Needless to say, I promptly researched mosquito nets for car seats as soon as we got home.)

Pesky mosquito fears aside, we all really enjoyed our short time at the park.  If anything, it made us feel confident that we can leave our house and experience fun things together.  We're looking forward to conquering many more family activities in the future!