Birthday fun for Steven Joseph

We were woken up on the morning of the 20th by a happy 5 year-old running into our room and declaring it was his birthday!  We spent a lot of time in the car that day, and he was so patient to make it to Houston, to leave the girls behind with my parents, and to have to go through some time waiting for his cardiac check-up. 

Unfortunately his birthday was the only day they could see him for this appointment before the new year.  By the end, his patience was gone.  The half hour echocardiogram was just too much and he was ready for some birthday fun! But the patience was rewarded...One of the best gifts that Steven got for his birthday was finding out from Dr. R that his heart looks great and he only wants to see Steven every 3 years!  What a gift!

As we were traveling, we set up a dinner with some friends at one of our favorite Mexican restaurants.  It was so great to be with our "crowd" again all together.  We've moved almost 5 hours away, and another family spends much of their time in the Middle East, so it was so nice to celebrate with these special friends who we miss so much.  Our other close friends with our goddaughter met us as we were leaving for a quick visit, too!  Here are a few photos...

SJ and his best bud J, so great to share this time together!

Sweet girlfriends at one table

And the other full table at Rico's including my parents, another grandma, and even a college-aged nephew joining us!  Lots of people, lots of noise, lots of fun!  My heart was full :)

He wanted a cake, but the cupcakes sufficed for this event

His first big-boy scooter!

Steven Joseph really wanted to have a "Nerf Battle" and a big cake for his birthday, but we knew it wouldn't work out on his actual birthday at the restaurant.  So we also planned a little celebration during the cousin Christmas get together on Sunday the 23rd.  Daddy picked out the orange and blue cake, which SJ wanted to decorate with Nerf darts!  The big "battle" didn't really happen since it was already dark outside and we still had Christmas gifts to exchange, but he had a lot of other fun times playing Nerf and other things with his boy cousins during our time in Houston.

So proud of his cake!

cute cousins

We had such a great time with friends and family.  Thanks to all of you who made it a fun birthday for SJ and a great parties for everyone!

Reflective

I've been in a bit of a melancholy mood this weekend.  A few different things have been on my mind.  Today was one year from the date of Steven Joseph's open heart surgery.  I've been thinking about it all week...the emotions I felt during those days leading up to the surgery, the way it felt to say goodbye and hand my baby off to the medical team, and the days of healing in the CVICU and cardiac floor.  My boy is as rowdy and boyish as ever, and I am grateful that this huge hurdle is behind us.

Right after surgery, and during the move out of the CVICU and down to the cardiac floor of the hospital:

 Doing a fun craft our friends gave him, and doing some artwork in the playroom at the hospital, almost ready to go home!

 And here he is this week, a bike-riding big 4 1/2 year-old, with a heart as good as new :-)

Another thing on my mind this weekend is the passing of little Hans Weberling.  As we were celebrating Thomas' 2nd birthday on Friday, the Weberlings were saying goodbye to their sweet boy.  Hans was in our church playgroup when Mary Clare was a toddler, and was diagnosed with cancer a few years later at age 3.  He spent almost 6 years fighting stage 4 Neuroblastoma.  He went through every type of treatment you can imagine from chemo, to radiation, to stem cell transplants, to radioisotopes.  This family always kept a positive attitude, finding the bright side in the midst of a very brutal treatment plan lasting so many years.  This child was a fighter, and each time the prognosis seemed bleak, he would forge through with a miraculous healing.  I kept up with them on their blog and Facebook, and was so saddened to hear that his fight had suddenly ended.  Still we have hope that his active 9 year-old body is fully restored in Heaven where he can be an advocate at the feet of Jesus for his family and friends, and all those little cancer-fighters who need that bravery that he had.  Please offer a prayer for Hans, his family, and all who mourn his passing.

I've been reading my first Jane Austen books this weekend, which may have attributed to a bit of my melancholy attitude.  My energy seems gone in the afternoon, and I just long to spend hours in bed reading.  Much of that was probably due to the fact that it was a hard week for me with Steven gone so much, and then he went on a hunting trip this weekend.  I had to take all 4 kids to a t-ball game and a Nutcracker audition, which was quite a spectacle!  Thomas fussed through the entire game and screamed and ran away from me during the 5 minutes I was in the Nutcracker meeting.  Steven Joseph was pretty funny in the t-ball game, but I'll try to get pictures up to share that soon.  I'm over a week behind posting pictures, but I have started Thomas' baby book, so that's one big accomplishment.  Unfortunately it kept me up until after 2:00am one night, so that lack of sleep has been affecting my attitude and my energy level!

We haven't been back "home" since early July, and I'm also feeling homesick.  Now with our baseball and Nutcracker activities, I'm not sure when we'll be able to have a weekend in Houston again.  The girls and I are definitely missing our family and our friends.  We have nice friends here, but it's just so different from the lasting friendships we have in Houston.  We miss being close to family during times of need and times of joy like birthdays and sports events.  And our friends there are almost like family to us.  One complaint of a bad day or sick child, and Beverly would be over with a meal, often inviting us over for special feast days and impromptu dinners.  Christina was always around to talk, to inspire us in the ways of craftiness and hospitality, and our kids are almost like siblings.  Jessica's kids and mine have been friends since they were newborns, and we miss seeing them so often.  I'm still able to talk to Veronica almost daily, but I miss our getaways to their farm and our girls' lunches with her and Marie every so often.  My BOL mom friends all knew me and accepted me for who I was, and we shared many a laugh and tear at LaMadeleine with Shannon, the Julies, and so many others.  I can't help but feel a bit detached and self-conscious with the ladies here, which is odd for me as a total extrovert who usually makes friends very easily.  I'm being challenged in ways of humility and patience, and I'm continually re-assessing my visions of our homeschool activities as well as our plans for where to settle with our family in a city that still feels somewhat foreign.  Hopefully the coming months will find us in better spirits, settling into our routines and activities, and enjoying the company of our homeschool friends and close-knit parish.  I know it will get better.

My health is not what it was a few months ago.  I haven't been able to find a time to exercise regularly, so I am gaining weight and my clothes aren't fitting.  I am determined to find a way to exercise twice weekly, but haven't found the right option yet.  No, with all this talk of hormonal emotions, lack of energy, and weight gain, I am not pregnant!  But it is surely on my mind now that Thomas is two.  I can't believe that two years have passed since he was born.  Like they say, "the days are long but the years are short."  So true.  As I look back at the photos and birth story from his early days, I am gripped with fear at what a future pregnancy and 5th c-section could mean.  We have yet to find (or thankfully, need) any medical doctors here in town, but I know it should be done.  We had such great doctors in Houston, I am worried I won't be able to find anyone who compares.  The last time I found a new OBGYN, I got pregnant just a couple weeks later.  I don't think I'm ready for that yet.  The girls, on the other hand, are constantly begging for a baby sister.  Mary Clare admonished me the other day, saying that God wasn't going to give us a baby if I wasn't praying for it!  I told her that I still have a baby; Thomas is still nursing and I'm not quite ready to move on from this stage.

I really am happy with our progress in homeschooling, and our family life balance is better than it has been in the past.  We do have several activities, but they don't feel overwhelming.  I'm more overwhelmed with going to the grocery store and cleaning my house!  Steven's job is going well, and we have the hope of being able to purchase a home here in the coming months.  Our kids are healthy, our needs are met, and that is all I can ask for.  Our family and lasting friendships will continue over the miles, and I know I'll find another exercise option and "get my groove on" again!  I am always in better spirits in the morning; tomorrow morning brings a little outing to finish an art project, so I had better get to bed!

Must write out my goals first, though...

Goals from last week:
1. Continue deleting random iPhoto images (not sure if it got a virus?) and start Thomas' baby book
2. Plan a family celebration for Thomas' 2nd birthday.  Gift and cake.
3. Schedule well-checks
4. Visit local teacher supply store and/or order final schoolbooks
5. Sort boys' clothes
6. Daily prayer
7. Daily Mass on Friday
8. Meals: Grilled steak, pancakes, rotisserie chicken wraps, chicken nuggets, spaghetti

Goals for this week:
1. Well checks for boys
2. Daily prayer (Universalis, daily readings app)
3. Shirts for 4-H
4. Write plan for nature club, purchase materials
5. A waaaayyyy late birthday gift that needs to be completed and mailed
6. Daily Mass on Friday
7. Bills and budgeting update
8. Meals: Grilled ribs/chicken, Leftovers, No Peek Stew, Baked Chicken Tenders, Pizza, Breakfast for dinner

Steven's ASD, Open Heart Surgery Story

Once upon a time there was a little boy named Steven Joseph.  When he was one year old, the pediatrician heard a murmur while listening to his heart.  A few months later, the cardiologist diagnosed him with Atrial Septal Defect, a hole between the upper chambers of the heart.  Before surgery, we were told the hole was the size of a dime, and it turned out there was also another tiny hole in his heart that needed one stitch.  In addition to this, his pulmonary vein was attached in the "wrong" spot, so the patch for his ASD would be a specialized curved one to allow the correct flow of blood due to the incorrect location of the vein.

The doctors decided that Steven would be ready to have his heart repaired around age 3.  We decided to wait until after the summer, so that he could enjoy a full Texas summer at the pool and beach!  After a diagnostic MRI at the hospital the month before, we met with the surgeon at Texas Children's Hospital and scheduled his operation for September 22, 2011.  This would be the day after his brother's 1st birthday!  But since we were also preparing for a move, and had been anticipating the surgery for several years, we decided to take the first slot available.

The day of pre-op tests

After a day of pre-operative tests and procedures on the 21st, we found out that Steven's surgery would need to be postponed a day due to a critically ill newborn baby who needed his surgery slot.  So we enjoyed our evening celebrating little Thomas' birthday and then spent a day at home before waking early on September 23rd, the memorial of St. Padre Pio!  We dropped off the girls with their grandpa and headed downtown with the two boys.

After a short time in the pre-op area where his vital signs were taken, they gave Steven a small sedative drink to make him sleepy when they would take him back for surgery.  He sat in his daddy's lap in a rocking chair, watching morning cartoons, until the surgery team came and the nurse took him and his "fisherman bear" and they were off to the operating room just after 7:00am.

I will say that those hours of surgery were some of the hardest of my life.  I sat with my mother-in-law, Steven Sr., and little Thomas, and tried to distract myself as much as I could.  I even tried to sleep once but was so nervous and crying so often that there was no hope in resting.  We were sitting near another family whose child was in open heart surgery.  They had about 10 people with them at all times, and I admit I was jealous of all the physical support they had there, even knowing how much prayer support we had coming from all over the world.  I felt lonely and afraid, and extremely anxious for the surgery to be over.

Little brother who was a distraction for all 

We got periodic updates from the surgical team that were maybe a bit more difficult than I'd imagined.  For one of the first updates, I was hoping they were already repairing his heart, but instead they said that they had just started the actual incision.  The prep time to put a child on a heart-lung bypass machine is very long.  It must have been about 2 hours!  At about 12:30pm we were finally told that he was out of surgery and breathing on his own.  Praise God!

We were able to see him soon after.  This was what he looked like in the Cardiovascular Intensive Care Unit.  He had lines in his neck, arm, wrist, and even his feet!  So many monitors, tubes, and needles!

That first afternoon and evening was very hard, because he really wanted a drink.  They wouldn't allow him anything for a few hours, and then only a tiny medicine cup each hour.  Oh, the pain to watch your child beg for a drink!  That was really, really hard.  But as the hours went by, he slowly woke up more, and they started to take the different lines out.

We put some videos on the iPhone for him to watch, but really the CVICU was just a miserable 24 hours.  I remember him sweetly asking for me to lie with him in his bed, but then realizing it made him hurt more.   So sad.  We did have some great nurses that were very knowledgeable and kind.  But it was so hard to see all the very sick children.  We also had to share a room with the other child whose family had been next to us in the waiting room.  The most difficult part was that during the night hours we had to switch off being with Steven and little Thomas in the Ronald McDonald room downstairs.

After those grueling hours, it was finally time to pack up the bags and move downstairs to the cardiac recovery floor!  Steven Joseph slept through the move.

That evening we put some jammies on him (which didn't last long, it was too hot!),

and he even got a Happy Meal!

Daddy played with him and his cars and knights.

And finally he got his drain removed (it was where the band-aid is, under his scar).  After the drain is out, it's much easier and less painful to move around.  The nights were hard in that room with the baby staying there too.  One night he had to get a new IV at about 2am, and that was very difficult.

But on Sunday afternoon, his sisters and cousins came to visit and he actually got out of bed for once!

We took him down to the playroom and he started playing and painting and walking!

 He was so excited and proud of himself, stating, "Mommy, I can do everything now!"

He couldn't wait to go show his sisters and cousins all the things he could do now.  It was like a complete change in about half an hour.  He went from sad and bedridden to happy and determined.  It was a beautiful thing to see.

So happy to be out of bed!

Now he could sit up and play with toys!

Later that night, our friends the K family came to visit, to bring us Holy Communion, and to take the girls home for the night.  Here we are in the hospital chapel looking at the scrapbook they made for Steven Joseph.

On Monday he was out and about, playing with balls in the hallway,

and doing some fun crafts!

Baby brother was still around.  Causing lots of trouble!  Everyone was getting bored at the hospital.

Here was the one couch bed for Mommy, Daddy, and Tommy to sleep!

We went back to the playroom where he did some dot painting.

It was right at this table when the attending doctor came to tell us we had the all-clear to go home!  In a whirlwind of half an hour we packed and ran out the door to try to beat the Houston traffic!

 With his bears and balloons in the car to go HOME!

The next day, we set up FaceTime at home on the iPhone with his friend.  He was so excited!

Here he is with the painting that I credit for his turnaround.  While painting a picture of the aquarium in the playroom at the hospital he went from sick to well in a few minutes. It's amazing what art can do for your mental well-being!

And here he is having a playdate with his buddy J a few days later.

This picture was taken before his one week appointment where they would take off the steri-strips and therefore this scary-looking red scar due to the iodine stuff we had to keep on it. 

Posing with his balloons.

Brothers in the exam room.  Lots of waiting to meet with nurses and such to make sure he was a-okay!

My little transformer dude!

After getting this all-clear from the heart clinic, he also met with our local cardiologist about a month after surgery.  All signs point to a full recovery and repair, and we will follow-up again in January and in the summer.  After that, he should only need a yearly visit to make sure his heart continues to function normally.  We can't wait for a fun spring and summer filled with baseball, beach days, and swimming!  Thanks be to God for the staff of Texas Children's Hospital who make it such an incredible place of healing for children like Steven.  Many thanks also go to the friends and family who prayed and supported us through this journey.

May we always remember "heart babies" and their families in our prayers.  We know so many personally, and I'm grateful that they were placed into my life to be a support during this time.  Some are still suffering.  Some need on-going medical procedures.  And sadly, others' hearts have only been healed in Heaven.  May God bless each of these children and their families in their times of need.

Sacred Heart of Jesus, we put our trust in You!