Big Day for our Family

I made a choice when Hunter was in the hospital to use this experience to help others.  I think we are given challenges in our lives for a purpose.  I know how I have personally grown from the life that we now live, but I also want to use it to help make a change in others.

A couple of months back I was asked to speak to a group of first year med students at UofA's Phoenix campus. They just ended their cardio-pulmonary-renal block and the title of the session was "The Impact of Heart Disease on Parents and Families".

I have been preparing our story and really contemplating the message that I wanted to deliver.  Congenital Hear Defects (CHD) have forever altered the course of our lives.  We also have some very real experiences with and exposure to physicians and hospitals.

This morning finally came and it was time to deliver our story.  All of my boys were in tow.  Corben found one of the student's laps to sit on and flirted with multiple other girls.  Hunter crawled around everywhere and even climbed the stairs in the lecture hall (his first time climbing stairs!).  Steve provided his perspective at the end and also answered questions during the Q&A with me.

I spoke from my heart and truly wanted to get the message across that while they will be learning the clinical side of their patients' care, the families and even patients themselves have real lives and real memories that make up their personal side.  I encouraged them to remember that and to allow themselves to get to know the patients and families on a real level and use them as members of the team in the care plan.  I know when we were valued as members of Hunter's team, we had so much more trust and respect for the doctors than when we were not valued.

I made a video to introduce our story that we showed at the beginning.  I wanted to share it here.  Enjoy :)

Best big brother

This morning Corben is being so helpful with Hunter. He fetched a spoon that H ejected from the highchair, without being asked.

Then he hopped up next to me and took over feeding. A huge mess was made but both of them thoroughly enjoyed themselves. It was the sweetest thing I've seen. Corben was very diligent about making sure Hunter had enough breakfast.

Big Victory in Small Movement

Hunter is now crawling.  To many this is a chance to think "Uh oh.....now the fun really begins.  Now I have to chase around an on the move infant"  But not me.  To me, this is a huge, great, happy, exciting thing.

Hunter was on bypass for 70 minutes.  He had a seizure.  He was in cardiac arrest.  He received 3 minutes of CPR.  Each of these things INDIVIDUALLY could have caused issues for Hunter.  He had all of them, in the same day, at 5 weeks old when his brain was still developing.  Sure, the MRI showed no brain injury, but that didn't mean he was/is safe from developmental delays.

I am a worrier.  I think of the worst case scenario to attempt to prepare myself for the path that may be ahead.  I am always concerned with Hunter's development.  He has hit all of his milestones on the average or maybe TINY bit late level.  He can roll, sit up, has completely age appropriate fine motor skills, but I still was worried about his gross motor skills. The doctor told me on average babies crawl around 8-9 months.  Corben crawled at 5.5 months. I know to not compare but he's my only reference point.  Hunter turns 9 months at the end of this week and sees the doctor on the 15th.  I am so incredibly proud and excited that I get to tell her that he is now CRAWLING!

Of course, I wasn't here for it.  I teach ballet 3 hours a week this year.... that is literally the only time I spend away from my kids.  We had a big competition/convention all weekend and I was gone pretty much all of Friday and Saturday.  Friday afternoon.....Hunter took his first crawls.  SO happy Steve recorded it.

He was going after Corben.  I love that C was his target.  The two of them are so sweet together.

Ever since then, he has been on the move.  He found the toy area while following Corben around.  He even is starting to pull up on things.

 I know what is in store for me.  A year and a half ago I was redirecting my 6 month old C from getting into everything.  I am so excited to be doing it now with Hunter.  I am so proud of him and he is super proud of himself.

Super excited he found the puzzles

Life changes when they become mobile.  To me, this is a very welcome change.  I am pretty confident that he will walk in the nearish future and won't have any problems with that.  I will continue to look for red flags of any mental development delays/issues.  I pray he doesn't have any, but I can't know for sure.  I want to be right on top of it and getting him the help he needs.

But for now I am going to just sit back and smile.  My boy has come a long way.... plus, let's face it... he's HUGE so he has a lot of weight to pull!

Wedding Weekend

My big brother now has a Mrs. Krieger....certainly his better half!  We absolutely adore Annabelle and are so thankful that not only is she the one who Erik chose, but that she chose him as well!

Not gonna lie, I was pretty nervous going into the weekend.  The last time we traveled with Corben was when he was 8 months old (not including his trip to California when Hunter was in the hospital, that doesn't count).  My girls were dancing at Disneyland and we made a mini vacation out of it.  That was a lot to orchestrate.  He didn't sleep well in the hotel, didn't nap, woke up the second night and had thrown up and had poopy pants out of his jammies......not fun.

So when I was going to be bringing my 2 year old, who was going to need to perform as ring bearer (read: BEHAVE), which if he doesn't get enough sleep he is miserable.  PLUS an 8 month old, the same age as our Disney-going Corben....yeah a little overwhelmed.

I wish I would have taken a picture of my lists and organized bags as well as the perfectly packed car.  I had extras for every scenario possible, plus all of our family's basic need items.  Yikes...so much stuff.  I spent an entire week preparing!

I am happy to say, though, that none of my emergency bags were needed. They were perfect on the drive out.....Hunter napped, Corben played with his stuff and ate his snacks.

Good boys in the car

We played at lunch!

Sleep the whole weekend was great... Hunter took his normal naps, Corben napped on the couch in our suite.  The first night was a little hectic.  Hunter woke up an hour after going to bed screaming.  He never does this.  I gave him tylenol and a bottle and he went back to sleep.  He woke up the next morning with his 7th tooth.  Corben woke me up at 2 am kissing me and blowing in my face.  Then he tossed and turned and tried to talk to me for 2 hours.  Finally at 4am he started to settle when Hunter woke up in the pack and play...ummmmm...grunting (I think he does his business in his pants around then every morning) and scratching on his pack and play.  This made Corben giggle and they then giggled back and forth for an hour.  At 5 everyone went back to sleep and slept til 8:30!  We moved Hunter to the living room the second night :)

He LOVED his sailboats

Looking at the fish tank at dinner

Hanging with Uncle Erik on his last single night!

Our boys are in bed at 7pm every single night.  The first night we had them out til 8....and the wedding night we were out til 10:30!!!! They were awesome.  No break downs, no attitude.  Perfect little gentlemen!!!

We tried to go to the pool but as soon as we got there the clouds covered up the sun 

and it was FREEZING!

                                                     The boys then napped and I got them ready....

                                                    

                                                    

SO handsome!

The wedding itself was beautiful.  The ceremony was so full of love and genuine.  I couldn't ask for a better family for Erik to marry into.  We consider them our family now and it is just so great.

Corben did his thing as ring bearer....he excitedly ran down the aisle.  So cute.
                                            
                                            
                                       The camera cut off right as he was walking but you get the gist!

LOVE this picture!

At the reception we all ate, danced, and had a fabulous time.  A fun time was had by all!

The next morning we packed up and headed out.  Thank goodness we left when we did.  Hunter had a bit of a meltdown 30 minutes from home.  Corben was starting to whine too (as were mama and daddy).  They ate dinner and got to bed at their normal times.  Everyone slept great that night and every nap and night since.....

Hotel Breakfast before we headed out

Such a fun experience and I am sooooo grateful that my boys were amazing.  We deserved a "normal" trip and time with our family.  I am happy that it all went perfect!

Congratulations Mr. and Mrs. Krieger!!!! Love you both!

Cardiology Update (Long)

Taking one child to the cardiologist appointment that in total lasts about 2.5-3 hours is difficult.  The thought of bringing two was so overwhelming that we decided to split things up a bit.  We did the echos (ultrasounds) on each boy seperately and then scheduled the follow up together.  Logistically it was a lot but it was a breeze compared to the thought of being there for 4 hours with a 2 year old and 8 month old.
Corben was due for his one year check up and Hunter hadn't been seen in 4 months.  You would think that I would be more nervous about Hunter's news since he was the one who has had open heart surgery, but no.  Hunter's path, while rockier, is pretty well known.  We don't know specific times but he will need multiple open heart surgeries in his lifetime, with at least 2 more before he's an adult.  Barring any freak things happening to his valves, we should be able to plan ahead with surgeries (all will be at CHLA..... I will not allow anyone at PCH to touch him, or Corben, if needed)
But Corben is the unknown.  Currently he has a bicuspid aortic valve that could cause problems.  We don't know what he will need.  He hadn't been seen in a year, he grows like a weed, and we have the knowledge of how bad it can be.... so there was no telling what news we would get.  He doesn't have any symptoms that worry me of anything..... just my mind that never shuts down.

Thankfully, it was good news all around.  I will start with Corben.

Last year at age 1, his aortic valve was not leaking at all and also had no stenosis (narrowing).  His heart was functioning perfectly normal with his defective valve.  The only small issue he had was that his aorta was slightly enlarged.  It wasn't something the doctor was concerned about but it was a red flag that needed to be watched.  The next step, if the aorta significantly enlarged more, was to talk about medication.  Sure, I don't want him on meds, but it's not a catheter or surgical intervention.
Thankfully, because of his growth, the aorta is now not enlarged AT ALL.  He still shows no stenosis or regurgitation.  Basically he is heart healthy with a bum shaped valve.  The "book" says the better the child does with this defect in the first couple of years is a good indication of what the future holds.  Since he has made it to 2 years old with no issues whatsoever, the likelihood of him needing ANY intervention within his first 3 decades of life is rather slim.  Dr. S also seems to think that the chances are good that he may not need anything in his lifetime.  Wow.  Of course, things can change and he will always be monitored but for now things look great.  His next follow up will be in a year.  Dr. S said that he doesn't want him to get an echo first even, that he will listen to him and be able to hear if there is a major change.  If he hears something he is concerned about then we will get an ultrasound that day.
Corben won't have any major limitations on activity.  He can't be a power weight lifter and shouldn't be doing any sort of max weight exertion lifting.  Contact sports aren't out of the question for him, but also aren't encouraged. He should have a very normal life.

Now onto Hunter.

Just a quick review on the physiology of his heart.  Because of how deformed the aortic valve he was born with was, it needed to be replaced.  He had a Ross Procedure that took his own pulmonary valve and put it in the aortic position.  This, because it is native tissue, will grow with his heart. This valve potentially could last 20-25+ years (before it could start leaking or narrowing)   Then, he had a donor valve put in his pulmonary position.  This will not grow with his heart. At some point he will either outgrow it, or most likely it will begin leaking or narrowing.  At that point we will plan for surgery to replace it.  The reason this surgery was done rather than just replacing the aortic valve that was sick is because aortic valve replacement surgery is much more invasive than a pulmonary replacement surgery.  Yes, he will still need to be put on bypass and the heart be drained for it, so it's not a walk in the park.  But it is less invasive than the aortic.  Plus the body can tolerate leaking or narrowing on the pulmonary side much more than the aortic.... thus extending time before needing surgery again.  Whew ok.... now onto his follow-up.

As of now neither of his valves are leaking or narrowing.  Both are functioning wonderfully and doing their jobs.  There is nothing to "watch" or be aware of.  He was on a blood thinning dose of baby aspirin daily that Dr S stopped.  They kept him on it 6 months post op just to help blood flow through the donor valve.  His team all was ok with it being dc'ed.
Right now the only medication Hunter is on is his Zantac for reflux twice a day.  We are letting him outgrow his dose though so probably by 10-12 months that will be dc'ed as well.  He will be med free!!!!
The "plan" is most likely surgery to replace his pulmonary valve at around age 6/7.  This isn't a guarantee though.  It could cause problems and  need to be replaced next year or could wait until he is a little older than 6/7.  It is all wait and see.  He goes again in 9 months!!!!

For now, we have two healthy little boys!  For the first time, Dr S didn't give me the "let him be a normal baby" speech.  Must mean he thinks I'm doing better!  I truly feel like I am.  When he had a cold a couple of weeks ago I went back into paranoid worry zone, but he fought it off and got through his first cold just fine.

We are so relieved that we got such good news.  We are blessed :)

                                    

My good boys!  Corben got a lollipop to distract him during his EKG.  Hunter is eating a plastic motorcycle.... :)

Fall 2012-present

There really is no way to go into every detail about how difficult our time was when we got home.  Hunter basically cried for 4 months straight.  Between severe acid reflux, milk protein intolerance, major constipation from switching his formula to soy, then teething, and ear infections, things were very rough until he turned 6 months old.

Thank GOD he slept.  Sure all of his naps were in the car (yes I drove him around every single morning) or swing until he was 5.5 months old, but at night he mostly slept in his crib until the early morning and then he snuggled in with me in our bed. He had to be rocked to sleep sometimes 2 or 3 times until he was finally settled in for the night.    Thankfully none of that backfired and he is now taking two great naps, gets to sleep on his own with just his pacifier, and sleeps 12-13 hours at night.  It is amazing that literally over night he changed.  Surely it was a miracle from God as I know I didn't do that myself!

I don't know why he was so cranky.  We really didn't go anywhere at all.  I would take him to his dr appointments, and we would go to Target as I don't ever buy too much at one time there and could abandon ship at any moment when he was melting down.  I did have to do that a couple of times.  So if you ever see a cart full of items just left in a store, don't judge or think the person is just rude. It could have been me, leaving quickly to avoid my child turning purple from crying so hard in his car seat.

Corben would just plug his ears.  I would break down as well.  Not gonna lie, from July 2012-January 2013, life pretty much was horrible.  There is no sugar coating it.

Without getting into the nitty gritty details, that is really all there is to say about it.  As much as I would love to, I will never forget last fall.  It's so funny because Fall 2011 was wonderful.....life was easy and that's why we decided to have another!  Ha.....

Thankfully the day Hunter got his 6 month shots he became a different child.  He is nice to be around, he can be left to play on the floor by himself without freaking out.  He can be flexible with his schedule.  He enjoys being apart of the family.  He is actually enjoyable.  In the early days at home I remember crying to my aunt and mom and telling them I felt so guilty because I wasn't enjoying him at all.  I had fought so hard along side him and then we got home and I was so unhappy.  Thankfully that chapter is over and he really is the sweetest little boy.

Corben has always been indpendent and mellow. Hunter had a rough start but is becoming more independent, still a bit more clingy of me than his brother was/is.  We call him my stalker.  No matter who is holding him, he cranes his neck around to make sure he can see me.  It's sweet, but a little creepy.

He has something so gentle in his eyes. He adores Sally....they are absolutely best friends. I think he will be a very caring and sensitive guy.  We absolutely adore him.  He's our little chubba meatball man.

That pretty much brings you up to speed with what stage of life we are in now.  We are just enjoying our 2 year old and 7.5 month old.

Some photos of us from last fall.....

A week in Isolation

Once we left the hospital, we rounded the corner, crossed the street and were "home"  I walked Hunter into our room at the Ronald McDonald House, sat on the bed with him on my legs and thought to myself "now what?"  I had been so wanting to get him out of the hospital but then was pretty much stuck....by myself.... with my freshly operated on 7 week old.

The first night was awful.  I didn't sleep at all.  I checked on Hunter every 10 minutes at least.  Even though the constant beeping of monitors in the hospital is enough to drive you insane, NOT having them once you leave is just as bad.

Waking up with my boy

Sadly for me, we never got into a routine there.  You aren't allowed to have food in the rooms at RMH so I would have to go down to the kitchen.  He was still withdrawing from his drugs and was beginning to show signs of his milk protein intolerance so he was pretty miserable. By the time I got him fed, pumped, cleaned and sanitized all of my stuff,  and make sure I let him get good rest, it would be time to start everything over! Feeding myself was last on the list.  Add on that as soon as he was put in the stroller he would scream and I avoided leaving the room at all costs.  That week was absolute chaos.

My first trip to the observatory with my little guy

I got to have dinner with Corben one night over Face Time

He was rather comfortable at RMH

Steve came on Friday evening to spend the weekend with us.  We couldn't do much.  We wanted to visit friends but it was just too much.  I didn't feel comfortable leaving too far away from the hospital so we just did small little trips.  We drove all through Beverly Hills, tried to find the stars' homes, went to the Griffith Observatory, and he made sure I actually ate!

The Hollywood Sign

Playtime

We went to an outdoor place for lunch

Steve was supposed to leave on Sunday but I was at my breaking point and he stayed with me another day so I wouldn't have to be alone.  I am telling you, that week at RMH I seriously thought I was turning into a crazy person.  It is so hard to explain.  Yes, it was only a week, but I had Hunter's Tuesday clinic visit to make sure everything looked good and get the go ahead to go HOME, hanging over my head.  If things weren't looking good, would we have to stay longer?  Be readmitted? Plus add on that I wanted to get home to see my other son.....it all just became too much.  All of you that have commented on my strength...... that week I pretty much cried everyday, all day.  After 2 months of being strong, I was DONE.

Snuggles with Daddy before he left

Steve left Monday afternoon.  Tuesday morning we had Hunter's x-ray and clinic visit.  Everything looked great!  They took his Lasix (diuretic) down to twice a day from three times.  They took out his stitches from his chest and chest tube sites.  Everyone thought he looked great and we were told to go HOME!!!!

That day I had to pack up all of our things and clean the room at RMH.  Steve returned on Wednesday, September 5.  I packed up the whole car while wearing Hunter in the baby bjorn, picked Steve up from the airport, and then he drove us home!

Hunter wasn't the happiest baby in the world, he cried a LOT on the way home.  I think that is when his milk protein intolerance and acid reflux was really starting to be painful for him.  Poor guy.

Driving home

Around 5:30pm that evening, we arrived home.  My Aunt Susan, from California,  had been staying with Corben for 10 days at that point.  She had dinner ready for us and a glass of wine poured for me.

 HOME!!!

We made it.  Our family was together.  Funny thing was, after the rough two months we had I couldn't imagine that it would get so much worse.  None of it was heart related for Hunter, but he turned into pretty much the worst baby ever!  But at least we were all dealing with it together at home :)

Our first morning home!