1 year later

I never did write anything on Trey's 1 year post-surgery date.  I wanted it to be a big day... a type of closure for us and in a lot of ways it was... but I didn't know how to put it into words.

On the 1 year anniversary of his surgery I delivered cookies to the local emergency room and our pediatrician.  I had also wanted to deliver them to his cardiologist and Inova hospital but the surgeon wasn't in that week so I waited till the following week to go to the hospital.  I knew that Dr. Gebru, the ER dr on call when we went into the ER both times, was going to be working that day so we were excited to surprise him.  I had spent the entire week before hand making, cutting and decorating 115 sugar cookies to thank everyone.  I packaged them up individually with a small note at the top and packed them all in boxes.  We got to the ER and went to the pediatric desk.  Dr. Gebru turned the corner and he looked at us... I could tell he was wondering who these strange people were standing there waiting for someone (Trey came with me).  Then all of a sudden his face changed into pure amazement.  He knew exactly who we were!  He was so happy to see us and vice versa.  I explained to him that Trey was doing great, his heart function is considered to be normal and he is off ALL medications.  He was floored.  It was so nice to see him and show him Trey. I opened the box of cookies and asked him to put them out as a thank you from Trey to the entire Emergency Room.  I thanked him over and over for everything he did while we were in the ER.... 3 times total with 1 overnight stay.  He teared up which made my heart swell.  He told me that me bringing Trey in totally changed his week.  Apparently, he had been having a hard week in the ER and us thanking him had totally changed his mood.  That made my day.

Then I took a box of cookies over to our pediatrician's office to thank them for being so patient with us!  We had a lot of appointments with them over the past year and they've always gotten us right in and back to see the dr so that we didn't have to sit in the waiting room with any sickies.

The following week I went down to Inova and dropped off a ton of cookies to the PICU for the doctors and nurses there.  Trey came with me and we were able to see a few of his nurses, the cardiac team and his surgeon!  We also brought Dr. Shen, Trey's surgeon, something special just for him.... a used Lortone rock tumbler.  Dr. Shen is very into recycling and reusing things.  The man bikes or walks to and from work everyday as well.  After Trey's second heart surgery (when he came off ecmo) we somehow got into a conversation about polishing rocks.  He wanted to find a used tumbler that he could fix and use.  So - that became my mission.... and 1 year after Trey's surgery I was able to get that gift to him.  Apparently he had still been talking about it because when I told the nurses what we had gotten him they were overjoyed!  Finally, they said, he can stop talking about finding a rock tumbler!  I was able to be there when he opened it and he laughed!!  I made sure to tell him that it was bought on ebay... used!  Do you know how hard it was to find a used rock tumbler that isn't going to cost the same as buying a new one?!  It's difficult... very difficult!

Afterwards I dropped off a special thank you gift to our cardiologist.  Trey gave him a superhero tie that we had bought from Etsy (we chose the superhero words pattern)  The special tie was handmade by a mom that has a special child.  Her child has Williams syndrome (which includes congenital heart defects among some other things) and the proceeds from the tie go to research of the syndrome.  She also sells other handmade items in her Etsy store called Petite Peanut.  This allows her to stay at home with her child to take care of him... she's an amazing woman.  We also bought Dr. Callahan a marble pastry board.  Through our conversations in the hospital I have come to learn that he loves to make apple pies and he makes his own crusts (I buy mine!).  I read somewhere that it's best to roll your crust out on a cool surface so it's best to put a marble pastry board in the fridge.  Then you roll the pastry out on the cool marble for best results.

I know we didn't have to do all of this but I wanted all of these special people to know that they were truly appreciated.  I wanted the gifts to be personal.  I wanted to let them know that the conversations they had with me during our stay in the hospital meant something to me.  They helped me stay "normal" and sane.  The conversation about the rock tumbler helped me stabilize after watching them do open heart surgery on my son.  I needed that kind of talk and they were conversations that _I_ will never forget.  I also wanted it to be a kind of closure as well... and it was.  The gifts/cookies were also a project that I could work on and it had a definite ending.

The year is over and we ALL survived.  Thanks be to God.

D-Day!

1 year ago today at this time (about 7:15 pm) Trey was being airlifted to Inova Fairfax with a diagnosis of probable ALCAPA.  1 year ago today at 10:30 Trey had his last fit of respiratory distress.  1 year ago I called the pediatrician to see if she wanted us to come in early for our checkup, I had been able to get him breathing again but I was a little concerned... she told me very bluntly, call the ambulance.  1 year ago today we were rushed into the ER at Montgomery General and Dr. Gebru looked at me in shock, wondering what in the world we were doing back there.  1 year ago he called Dr. Callahan to do an echo on Trey.  1 year ago today Dr. Callahan looked at me, told me his diagnosis and I said...

"What am I going to do with the dog?!"

1 year ago Trey was diagnosed and our entire life changed.  Diagnosis Day, or D-Day, will forever be burnt in my memory.  It was such an odd day!  Almost so much that I look back on it now and it was almost humorous.  So while it's a day that forever changed our family... I don't look back on it in a bad way.  Yes, I so wish Trey didn't have to go through everything he went through.  I wish he could have been happy and healthy from the get go, but goodness I just have to laugh at it all a bit.  For example, the poor boy was in respiratory distress and I just calmly was able to "pat" it off and he calmed down.  I then called the dr very calmly and explained the situation... I seriously believed his breathing episode was due to the rhinovirus they diagnosed him with at Children's.  It's just so shockingly funny to me that I behaved that way.  

I remember the Dr. Callahan explaining what was going to happen.  That he had to have surgery.  In my mind I was thinking... oh, crap... it's the beginning of school, we have a ton of stuff going on and now I have to fit in cardiologist appointments AND a surgery?  When in the world am I going to schedule this stuff.  Totally not realizing that we weren't leaving the hospital.  HA!  In my mind we were going home with him first!  In my mind I was also thinking - no way, I can hardly remember to give medicine to the dog... how are we going to remember the dog's medication AND the baby's extensive list of meds he was telling us we'd probably come home on.  

While I was being told the diagnosis, David was teaching his first class of the year at Johns Hopkins and too funny.... there was NO way of getting a hold of him!  My in laws were on vacation!  I had to call them and tell them what was going on.  I had no idea how to tell either of them, my husband (when he finally called after class) or my inlaws, what was happening.  I had to look at the nurse and ask her what to say!

Earlier that day... I actually told David not to come up to the hospital!  I totally figured it was that darn cold rearing it's head again and that we'd be fine up there without him because heck, we'd probably be discharged soon anyhow!

After I called the ambulance I ran out of the house to my neighbors and banged on the door.  By this time Trey was vomitting a bit so I was holding him upside down (I just figured it was because of mucus in his stomach or something) as I ran.  I had needed someone to watch Cole while I went to the hospital and as I was explaining to them what was going on I look over to see Cole just walking out the house (still in his PJ's mind you) towards the street.  Yup, totally just left him in the house by himself.  

There are so many other little things that happened that day that I just chuckle at.  It was just an  o d d  day.  

On the other hand, my heart overflows to everyone involved in that day.  We are SO lucky to have such a great support system.  Not only family and friends but doctors and nurses as well.  God truly placed the right people in the right places that day.  

Dr. Gebru... the pediatric ER doctor

Dr. Patrick Callahan... the pediatric cardiologist

The pediatric ER nurse (I can't remember her name) that was there that day AND the day we 1st went in

Tracey Douglas... an ER nurse

Dr. Futterman.... the PICU dr. at INOVA that admitted us

Savannah.... the PICU nurse that took care of Trey that night

Jackie and Steve... my neighbors that watched Cole pretty much most of the day

My parents... who came right away to watch Bryce after school

My in-laws.... who cut their vacation short to come home and help

Jenny... my friend that I texted non-stop to throughout Trey's entire ordeal.  When we went into the ER the first time I knew I needed someone to pray for him and us.  She's the first person I thought of and I texted her right away.  I don't know why she came into mind right away but she did and I have no doubt in my mind that it was God telling me that she would be my prayer support... and she has been. 

So this day has been interesting.  It's been spent both laughing and crying.  My heart hurts at times because I have SO much gratitude to the people that saved my son.  I just can't thank everyone enough.  

I'll leave you now with some cell phone images from last year.  In the first he is being prepped to be air lifted to Inova and the second picture is him soon after getting to INOVA.  

... and here he is today!

P.S.  By the way, our dog was diagnosed with Cushing's Disease 2 weeks ago.  The entire thing just is so ironic.  Trey finally is off all medications... and the dog has to go on more!  

Cardiologist Appointment - 11 months post surgery

We are 11 months post surgery.  The surgery seems like just the other day... yet, also seems like ages ago... all at the same time.  Trey was a superstar at his cardiologist appointment with Dr. Callahan today.  He's getting so old!  The last time we went to the cardiologist he wasn't moving around, he just sat in his stroller waiting for the doctor.  Today he wanted to play with all of the toys and check out all of the literature in the waiting room!  What a boy... totally drawn to the car magazine!

He had an EKG (which I assume was fine... I didn't ask about it because I'm more interested in the results from the echo-cardiogram!)  and an echo.  He did great with both.  The EKG is pretty easy.  They just stick a whole bunch of stickers on him with leads going to a machine for a few minutes.  I just held his hands and he looked down at his chest the entire time.  Easy peasy.

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Next up is the echo-cardiogram.  Those are a little more difficult because they take longer.  We tried to get him to watch an Elmo movie but he really wasn't too interested.  He just wanted to watch the screen of the echo and wiggle around.  He wasn't too thrilled with the gel they put on his chest to get the images.  He wanted to touch it and smear it everywhere.  I was able to hold his hands most of the time but he definitely is a wiggler when he doesn't get what he wants!  Overall he did pretty good for a 1 year old though!

So... for the results.... 

Dr. Callahan took him off his last medication (Digoxin, .5 mL 2 times a day)!  AMAZING!  When we were in the hospital they were telling us to expect him to be on medication till he was about 2 or 3.... one of the cardiologists mentioned possibly 5.  Trey is now medicine free at 13 months old!!  God is good!!!  I have no doubt in my mind that God has great plans for this boy.  

So the low down.... his mitral valve (the valve between the left atrium and ventricle) is still a bit leaky but as of now... not a big deal.... and may never be!  Heck, for all we know, many of us could have leaky valves in our heart and not know it because there aren't any side effects hence no need for a scan.  There is still a small brightening on the back of the heart muscle that shows up in the echo but it seems to be a bit smaller than last time.  This is evidence that there was definitely damage to the heart (cells that died for good) and that will never come back but as his heart grows the new cells should compensate for it.  My assumption is that as the heart gets bigger, this "brightening" should look smaller.

The other news is that we don't have to go back to the cardiologist for 6 months!  We had been going about every 3 months or so on average.  After our 6 month follow-up, if everything is still a-ok, we will go to annual cardiologist visits!  

Trey came off the Prevacid after the last gastro appointment.  She mentioned we could try it if we wanted to to see how he did.  I had forgotten to give it one time and he did fine so I just decided to keep "forgetting" and he did fine.  He still definitely has some reflux... you can definitely hear it... but going off the Prevacid didn't make him any more fussy.  It was one less medication I had to remember to give!  So now we are down to ZERO medications!  I am thrilled.  When we got home I was able to erase the last medication off of his "current medications" form that I keep in his medical binder!!

I want to take this time to thank each and every one of you for keeping us in your prayers.  I feel as though this is all coming to an "end."  I look back on it and gosh, it all seemed to go so fast... although I know that when we were in the middle of it I thought it would never end!  For this to have a positive outcome in just one year though is amazing.  I believe that a large part of him doing so well was from all of the support we have received from our friends, family and even strangers.  Our friends and family have lifted us up in so many different ways.  I've also met so many new people through this ordeal that will forever change our lives.      Thank you all!

GOD is GOOD!

Trey's 1st Birthday

Trey is officially 1 year old today!  So hard to believe that my youngest (and last!) child is now ONE!

1 year ago today, on a Friday, I gave birth to a "healthy" 7 lb 8.6 oz, 19 3/4 inch baby boy at 9:10 pm.  

   

The boys were so excited to have a little brother.  Especially Bryce... he waited at the hospital for a long time so that he could finally meet his youngest brother.  He couldn't wait to see what color his hair was!  We determined that he would probably be a red head like him but it was difficult to figure out since there was very little hair!

We went home on Sunday with our healthy baby boy.  Little did we know what the next year would have in store for us!

1 year later we celebrate his birth.  While this day is a big deal... I think his surgery date might be more significant for me.  Today is the day he was born but September 14th is the day he was saved!  We celebrated today with family.... both sets of grandparents, his aunts & uncles, his brothers and us.  We had dinner and dessert on the deck.  The weather was gorgeous and we had a great celebration!

Trey didn't quite know what to think of the candle.  We had to hold his hands down because he wouldn't stop reaching out for it.  I think the entire thing just confused him!  I don't know why we did it though because it's not like he even knew to blow it out.  Really, we just did it for a picture I guess but then of course we had to restrain him so it's not like the picture turned out that great anyhow!

He really didn't know what to do with the cupcake at first either.  It took him awhile to figure out he could put it in his mouth rather than just play around with it.  Surprisingly he puts everything else into his mouth before playing with it though!

He finally figured out that it could go in his mouth and it tasted good!  Aunt Kari (David's sister) made the cupcakes because I cannot make cupcakes for the life of me.  I have no idea what I do wrong but every single batch I have ever made end up sticking to the liners... and I've tried every kind of liner out there!  So many thanks to my sister in law for making the cupcakes!  Trey is still on his soy formula and we are unsure if he can have dairy but I made an exception for his birthday.  He didn't seem to have any reaction to it so hey, hopefully the transition to milk in the near future will be an easy one!

Bryce and Cole had a blast opening Trey's gifts for him.  Trey had no desire to do that for himself.  He was way more interested in eating the wrapping paper.

I am just so incredibly thrilled that my baby boy was here to spend his 1st birthday with us!  I look back and this year has been unbelievable.  He has gone through SO much this year.  It's amazing that his little heart is on the mend though and that we will be able to put a lot of this behind us pretty soon!  He will always have the scar on his chest and will have to go to the cardiologist annually but his heart is on its way to full recovery!  God is absolutely amazing.

My boy is amazing.  Every little thing he does amazes me and I am so glad that he can continue to do so.  I pray that he has a joyful future ahead of him filled with happiness and excitement.  I pray that he grows up and is able to do whatever he puts his mind to.  I have so many hopes for this little boy.... but right now I am extremely content to just watch him play with his new toys!!

Grieving for *those* parents...

I've been thinking lately about what we have gone through in the past year with Trey.  There were so many signs before he was diagnosed that we should have picked up on but didn't... and I don't fault us for that, we didn't know that signs of heart failure and we certainly didn't expect it in a newborn that was weeks old.  I've been thinking of when we first went into the Montgomery General ER and how he couldn't breathe, nor could they get him to stabilize.  It was an insane scene, so surreal... almost like I was watching it on ER, the TV show instead of living it.  I remember hyperventilating and not being able stop crying.  I couldn't even stay in the room and watch.  There were so many people running in and out, I just didn't want to be in anyone's way.

I then fast forward to the day of his diagnosis.  The shock of hearing something was wrong with his heart.  I remember thinking, crap, how am I going to find time to go to doctor appointments and schedule surgery?  I didn't realize that we weren't going home.  That Trey was going straight into the ICU until his surgery could be done.  I remember not being able to contact David and let him know what was happening because he was teaching a class at Johns Hopkins.  He knew I was at the ER but we had been there before and we weren't too concerned.  In fact, I told him not to leave work to come to the hospital.  I told him to come after his class.

I think about us then as if it wasn't really us.  I grieve for those parents.  I want to just hold them and tell them it's going to be alright.  I think about those parents and want to take it all away.  It's so... odd.  I look back and remember going through the motions.  I remember people asking me how I was handling it... they couldn't imagine what I was going through.  At that time though, you just do it.   There's no choice.  I know I've said that before... but now we're at 9 months post surgery and wow, I am starting to not even be able to imagine how I did it.  My heart aches for that mother... that mother that watched her child just bleed.

Yet, I don't want to forget one single thing about my experience.  I just would rather not remember in third person.  I want to be able to remember it all in first person.  I want to remember the incredible faith I had during that time.  During the entire journey not once did I doubt God and his plan.  During the darkest times I knew God was carrying me through, I had no doubt that he was supporting me.  I have no idea why this happened to us and I still don't... but it was for a reason.  I may never know what that reason was but there is a plan and God is great.  Now that we're "normalizing" it's hard to keep that incredible faith up all the time.  It's definitely there.  God is steering my life but I notice that sometimes it's hard not to want to take over myself.  When we were in the hospital, I couldn't take over... I had to surrender all.  God had to carry me.  Now, not so easy.  I have to stop myself now and remind myself that things will work out.  Whether the house is clean or not... we will be ok.  God will bring us through this hectic time of having 3 young ones (now all mobile) and things will work out just fine.  We'll survive and be happy.  If only I could have that extreme faith from the hospital back to help me through these mundane things (laundry, dishes, messes).  What I experienced in the hospital was amazing.  I grieve for *those* parents but gosh, I also envy those parents.  God showed me how strong I really am and in the end... showed me how incredibly awesome He is!

Standing!!

8 1/2 Months Post Surgery - 11 months old

Things here have gotten extremely busy and I'm not totally sure why.  I mean - I know why... but I don't know why I am finding less time to get on the computer now than when Trey was in the hospital/first home.  I think back then I was just running on auto-pilot.  I look back and wonder how, after I got home (anywhere between 8 and 10 pm), I would find time to get on the computer, do anything at all to the house or even watch a TV show.  By the time the kids get in bed now, all I can think about it getting myself ready for bed!  We usually watch 1 TV show and then it's off to sleep we go.  I find it so hard to do anything at all on the computer anymore.  I have a ton of pictures that I keep downloading from the camera in a temporary folder on the computer, just waiting to be sorted and looked at.  I used to come home every night and go through my photos from that day right away.  Not anymore!  Plus, Trey is doing so well that there really isn't that much to update anymore... thank goodness!

Trey is now about 20 lbs - he's my BIG baby!  Neither of the other boys were even close to 20 lbs at almost a year.  Which.... I can't believe it... but in 23 days Trey is going to be 1!  It'll be so much easier to tell people his age... one!  What's interesting now is that when people do ask me his age... I have to stop and think.  I usually think of his post-surgery "age" first and want to say that... then I realize, that's not his age!  That's how I think of him though, his surgery date is more of his "birthday" for me now.  I can spit out his diagnosis date, September 12, so much faster than I can his birth date, June 24.

He just started crawling around towards the end of last week.  He had been shimmying around a lot prior to last Friday but I would say he all of a sudden became somewhat quick on Friday.  He just boggles my mind.  There's something new everyday now and he is SO happy about it!  His speech therapist and occupational therapist were here yesterday and they were amazed at how much he's changed in just 2 weeks.  He just seems  more composed too - more "organized", which makes him happier.  He seems to be able to figure things out quicker now.  He still has some meltdowns but I can calm him down by putting 1 hand on his stomach and the other hand on his back if I can't figure out what the reason behind the meltdown is (hungry, sleepy, etc).

He still isn't eating the greatest.  He'll suck 150 mL out of a 200 mL bottle down but has recently started refusing the last 50 mL.  I think of everything in mL now... that roughly 4 out of 6 ounces for those that don't!  According to the calculation rule the Gastro dr game me... he's taking in enough to be hydrated but not enough calorie wise at all.  Yet, he still seems to be gaining weight, so again I'm not toooooo worried.  I just don't want him to get too behind that he decides he doesn't want to eat again and we're back to discussing a tube.  We go back to the Gastro on June 14 so we'll see what she thinks then.  Since he's turning 1 I have a lot of questions for her!  He's still on soy formula so not sure if we'll transition to soy milk, stay on the formula for a bit longer or try a transition to cow milk and see how he does.  He's eating puffs now too but has no desire for any other finger foods.  He also gets the puffs stuck in the back of his mouth a lot and gags... this causes him to throw up.  It doesn't happen all the time... but definitely enough that its a pain.

The other problem is that he's really constipated.  We give him a tsp of Maalox every night in his last bottle and he'll go days in between bowel movements.  If we don't give him the Maalox it involves a lot of crying and bleeding when he has a movement.  It's not pleasant.  Surprisingly, the constipation doesn't seem to make him too fussy unless he's busy going.  That's what is the worst right now... the painful constipated bowel movements.  That's something else we'll have to discuss on the 14th.

Happy boy on Mother's Day!

He loves the water!  I think I see some orange fuzz up there on that head!

On another note, please pray for 2 other heart babies that have been placed on my heart.  Over spring break a mother emailed me that had found my blog.  Her son, Liam, had ALCAPA as well.  His story was SO similiar to Trey's.  I haven't heard from them lately but they've been in my prayers.  He had his surgery in March and the last I heard in April is that he was "stable" but had some feeding issues after being discharged from the hospital.  His were so severe that he became dehydrated and had to be re-admitted.  Please pray for Liam and his family.

Another baby, Jaxx, is a local baby that was born a little over 3 months ago.  He has Hypoplastic Left Heart Syndrome (HLHS) and has had some major complications along the way.  HLHS requires a series of 3 surgeries in order to rework how the heart circulates blood through the body (since the left side of the heart is either very small or missing).  Jaxx had the first surgery but then had some complications.  He was transferred from Children's Hospital in DC to Pittsburgh, where it was thought he may need a heart transplant.  In Pitt, they ended up doing the 2nd surgery instead of the transplant and so far he has been doing "ok".  He was on ECMO for awhile but was just weaned from it on Tuesday.  Prayers are needed for a smooth recovery for him.  Thank you!

Cardiologist Appointment

I LOVE going to the cardiologist.  I always look forward to Trey's cardio appointments.  Whether good or bad - I want to know what's going on.  I hate not knowing.  At the appointments I either get reassured that he's doing ok or I get news that something has to be done to fix him.  Thankfully, we've only had 1 bad "appointment" and that was his first ever appointment.  Looking back though, it wasn't really a bad appointment.  The doctor was surprised at how "well" I took in Trey's diagnosis.  The nice thing about the entire ordeal was... ok, so yes, something is wrong and well, this is how we're going to fix it.  Personally I found it so much easier to take in that he had a heart defect than it was to take in that he had Rhinovirus and we just have to ride it out.  It was nice to get a diagnosis that could be fixed.

Trey's cardiologist is awesome.  I don't think I will ever forget meeting Dr. Callahan.  We were at Montgomery General and he came from his Rockville office after hours to come do an echocardiogram on him in the ER.  He was really calm through the whole thing and extremely helpful when Trey became pretty fussy towards the middle of it.  He never seemed to get frustrated with the fact that I just couldn't get him to stop crying and I was definitely getting flustered!  During the echo he talked on the phone with his family, discussing time outs and asking his daughter what mom had said about the issue.  I really liked that he seemed to be a real family guy.  He asked about our family and since then he's called my kids uno, dos and tres.  When he gave me the diagnosis, he gave it to me straight and definitely helped me try and understand what was happening.  I remember him telling me what was going to happen and that when Trey left the hospital he was going to have to take lots of medications for awhile.  I'll never forget just looking at him and saying, "what am I going to do with the dog??  I can't even remember to give the dog her medication!"  That definitely should have been a clue to him that I think a little different than most people!

Needless to say, Dr. Callahan rocks.  The only thing I fear at the cardiologist appointments is that I won't be able to keep Trey from fussing during his echocardiograms.  He's getting older now and a little less patient.  Yesterday he did definitely get fussy and the Wiggles video that was on was just not keeping him entertained.  The next thing I know, Dr. Callahan is dancing (yes, dancing!) in and out of the room to the Wiggles music to entertain Trey.  Trey is my 3rd child - even before this heart thing we've had our share of Dr. appointments and ER visits.  We have never had a doctor dance and parade through the room like Dr. Callahan did... just to keep my child happy!  Seriously, he's awesome.

I do have to give props to his echo tech and exercise physiologist as well.  They also did an awesome job at keeping Trey entertained.  His echos aren't the quickest thing in the world... plus they're not the most comfortable thing either!

Waiting to get set up for his echocardiogram

The beginning of the echo

Waiting for the EKG

All hooked up!

During the EKG

And what you've all been waiting for....

Trey's heart function stayed about the same... even off of the Enalapril and Lasix!  Yay!  Trey is now almost 10 months old (on the 24th) and we are 7 months post surgery.  He is doing SO much better than I could have even dreamed about 7 months ago.  He does have some scar tissue on the back of his heart and his mitral valve is a little leaky but right now those things aren't anything to worry about.  Dr. Callahan did mention that down the road it is possible that his mitral valve could have some issues... but then again, maybe not.  So right now - it's a non issue.  He's doing GREAT!

Dr. Callahan saved my son's life.  There are so many people that have had a hand in saving Trey but Dr. C diagnosed it and has been there with us from the beginning.  The course of treatment Dr. Callahan followed has been ideal.  I couldn't be happier with how things have worked out!!  Thank you Dr. Callahan!!

A Long Overdue Update...

Wow, I haven't updated in a month!  Things have been just plain busy.  It's amazing how much crazier things get with just 1 more child in the house.  Before Trey I used to stay up way too late doing digital scrapbooking and getting things done around the house.  Now, I just can't seem to focus on anything.  Before I know it it's 10 o'clock and nothing has gotten done - by that time all I want to do is sit down and watch 1 TV show from the DVR because by 11 pm I want to be upstairs getting ready for bed, doing yet another bottle feeding and getting to sleep.  I have no idea what goes on between 8:30 and 10 o'clock pm.  It's checking emails, writing emails, looking at the calendar and figuring out schedules, working on MOPS stuff or looking at boy scout stuff for Bryce.

There really hasn't been too much going on in the world of Trey during the past month.  His feedings are getting better.  He's up to about 1000 mL's (or 33 ounces) of formula a day which is HUGE for him.  He's eating 3 meals of solids now and he seems to really enjoy them.  We saw the gastro at the end of March and she was a bit worried that he hadn't gained that much weight.  He was still hanging out at around 18 lbs (for a little over a month).  I had decreased the calories in his formula from 27 kcal/ounce back down to normal, 20 kcal/ounce, because he got way constipated for awhile.  She wanted me to go back up in calories but I just had a gut feeling that it wouldn't be good for his system.  He started taking miralax to loosen up his stools but even that really hasn't worked so I've been hesitating upping the calories of the formula again (that can cause constipation as well).  Well - we went to pediatrician on Tuesday for his 9 month checkup and vaccination and wouldn't you know it.... he is 19 1/2 lbs!  He gained 1 1/2 lbs in about 2 weeks.  That's really good.  So, I've decided I'm going to keep the formula concentration as is and not up calories.  By the calculations she gave me... now that he's up to 1000 mL a day and if I can keep all 3 meals at about 70 calories each he gets 876 calories a day.  His caloric need for his weight (19.5 lbs) is estimated to be 868 (according to livestrong.com).  So he's finally doing just fine in the eating department!  He'll still leave an ounce or so at the end of the bottle if it's left up to him to eat but if I hold him and sing "I've been working on the railroad" he'll finish it up just fine.  I have no idea what in the world his fascination is what that song but since coming home from the hospital it's the only thing that has been able to get him to eat... and trust me, I've tried other songs... it's just that one that will get him gulping!

We actually just got back from Fort Myers, Florida on Monday.  The boys and I went down with my mother for spring break.  It was a great week!  The boys had a fantastic time playing in the sand and water.  Trey really seemed to enjoy the water.  The first time I put him down in the gulf it was a bit overwhelming.  I just kept thinking how thankful I was to his cardiologist for seeing his problem.  If it hadn't been seen, we wouldn't have been sitting in the water together.  I thank God daily for putting so many specific people in our life that helped Trey get fixed up and healed.  We really have had such great experiences with not only his cardiologist and surgeon but we were blessed with so many fantastic nurses, therapists, echo-sonagraphers and so many more people we've met along the way that have had a hand in helping us through this.

As for now, it's officially 10:25 pm and I am late in getting downstairs to watch a TV show with my husband.  An adult show is definitely a wind down activity for me.... adult in meaning, Grey's Anatomy... not Yo Gabba Gabba or Power Rangers!  I'll write more about our vacation and Easter another day because I'm just exhausted right now but I'll leave you with a picture of Trey enjoying his first time ever in water other than a bath.

Superwoman

Today I feel like Superwoman!

This week I've really been trying to be more motivated in getting things done in the house.  At the end of last week I did a total overhaul (well not total... but pretty big) of upstairs.  I just put everything away and cleaned everything off.  I just couldn't live with seeing "stuff" everywhere!  This week I've been able to keep it up pretty well and tomorrow I'll be able to dust/vacuum/straighten up pretty easily!  I've stayed on top of laundry pretty well and the only mountain we have is dark wash, which I plan on getting done in small loads (our dark wash is a daunting task since I'm pretty specific on how it needs to be dried for only 10 minutes and then hung up a certain way... plus, certain pants and shirts have to be stretched before they can be hung up so that they don't turn into capris or elbow length items... I'm tall).

Today (yesterday too) I just feel as though we lived a pretty full life AND the house isn't a total disaster.  I stayed relatively sane and organized.  I'm pretty sure it also has to do with the weather too though.  The weather here has been gorgeous.  Sunny and upper 60's.  We spent time outside and took walks. It was nice.

I have to admit though... most days I don't feel like a super anything.  I struggle with getting things done.  I have a hard time functioning when things clutter up the floor and the counter tops - which they usually do.  I have my up days and down days (as well as up and down in a single day as well!).  But today I feel great.  I feel accomplished.  

Another reason for feeling good is that I've slowed down my "projects."  I take on way too many projects.  I stay up way late (anywhere from 1 to 3 am) trying to get things done.  Instead now, I'm getting more sleep on a regular basis.  I've been limiting myself to straightening up, watching a TV show before bed and then going to sleep!  I'm not getting on the computer to get something done.  I haven't started figuring out when teacher appreciation day is and getting letters written to Bryce's classmates to do a small gift.  I haven't done the MOPS newsletter that I so would love to get created.  I haven't sat in front of the computer wondering when I'm going to get my next scrapbook page done.  PLUS - I'm OK with that all right now (so not like me!).

(Sidenote:  speaking of projects though, I did do one small project last Friday night.  I made those capes the boys are donning in the picture above.  Cole was invited to a superhero birthday party and instead of buying him an expensive costume to wear that I know he'd ruin I made him his very own felt non-sew superhero cape.  I even ended up having enough felt left over to make Bryce one as well!)

God is definitely whispering in my ear.  He's telling me to slow down.  By slowing down he's been giving me the energy I've been praying for to get the house somewhat put back together to how I need it to be (um, well, next weekend we focus on dusting downstairs!).  He's given me the energy to take the 2 little ones to the grocery store (our free delivery from Peapod has run out).  He's given me the energy to not drag in the morning and enjoy Trey's new little sounds.  God definitely amazes me.  I prayed and prayed last week for the energy to be the mom I want to be.  

There's still a huge way to go... we have a lot of home projects that need to be tackled this spring and we've put off for a few years now.  It will be harder to get them done with 3 kids instead of 2... but I trust He will inspire me to get it done.  We now have 3 little blessings and I want to be able to have a backyard (as opposed to the swamp it is now) to do things in with them.  

No, I understand this post isn't much about Trey - who is doing great by the way!  It is however, part of my journey with Trey (and my other boys).  Not only am I learning how to live life with 3 very boisterous boys but I'm having to learn how to live without worrying about Trey's health all the time.  He's eating well, he's coming off his heart meds, he's off the feeding tube... he's doing fantastic!  However, every small strange sound or movement he makes could be a sign of something... but I'm re-teaching myself that babies are also just babies.  They sometimes make odd sounds.  They sometimes spit up for no apparent reason.  My personal journey to fixing Trey's heart is to learn how to live with it instead of in fear of it.  This part is a bit hard - but I'm definitely getting there.  I don't feel as though I have to shelter him from everything.  I've been taking him out and we've been living our life as a family again.  Things are moving on... all thanks to God.  He has helped us through this journey and he will continue to be with us as a family.  

Today I feel like Superwoman.... walking side by side with my Super God. 

Our Journey at Inova through Pictures

For some time now I have wanted to post some more pictures of our time at Inova.  I don't want to post them on the main page though because most of them are quite graphic and may be disturbing to some people.  I wanted you to get an actual idea of what we experienced while we were there.

The experience was surreal.  Unbelievable at times.  It was a lot to go through as a parent.  I wouldn't change it for the world though.

So without further ado...

(disclaimer... do not click on this if you cannot handle pictures involving blood or sutures)

Our Journey at Inova through Pictures

(the pictures are in chronological order... click on the 1st picture and continue from there)

Gastro Update

The gastro dr. went well the other day.  Apparently Trey baffles her.  Trey didn't even gain 1 full pound while on the NG tube, but since going off of it he has gained 2 pounds.  Yet, takes in very little calories.  According to the numbers he shouldn't be doing as well as he's doing, he shouldn't even be hydrated... but he is and he's gaining weight.  Go figure.

She is having us up his calories again from 27 kcal/oz to 30 kcal/oz.  She just wants to make sure he gets enough calories.  Since he's gaining weight she doesn't want to put a feeding tube into his stomach, even though the amount he takes in warrants one.  We are giving 2 mL of mylanta before every feeding to see if that helps with the reflux (it coats the esophagus) and she had him get a blood test to check his electrolytes and such.  She also wrote an order for Trey and Cole to have a stool sample tested to make sure they don't have any bacteria (they both have diarrhea pretty bad still).

Apparently his upper GI series showed that his duodenum was a little misshapen.  This is the part of the small intestine that attaches to the stomach.  She wants to repeat the upper GI when he is a year old to make sure that it is growing normally with his body.  If he remains extremely fussy she said that we can repeat it sooner and also do a study of the lower bowels.  Basically, we're still just watching him and keeping options open.  We go back again to see her in a month.

I think we actually have a break from doctors this week!  Not one appointment scheduled.  Wow!  

Pediatrician Appointment last Friday for his Synagis (RSV) Injection

18 pounds!

Happy baby - he has no idea what's coming.

Synagis Shot #1

Synagis Shot #2

Trey's top 2 teeth broke through!

The poor kid has been extremely fussy this entire past week.  I'm really hoping that maybe this week his stomach and teeth will feel better and he won't be as cranky.  Last week involved a lot of screaming.

5 Months Post Surgery

Wow, I haven't updated in awhile.  There's SO many reasons for that.  Things this month have been a bit hectic and a bit uneventful at the same time.  The beginning of the month started out well.  Towards the middle of the month I started a huge push to get Bryce's classroom Valentine's Day Party organized.  That took a lot of time. It ended up taking a lot more than I had expected.  I have some other little projects going on as well, so with the added party and trying to keep up with "the norm" things got out of hand.  Then - the stomach virus hit the house.  The past week has just been a nightmare.  

Bryce woke up with it first the Friday before Valentine's Day.  He only got sick once thank goodness - but it was all over the room so there was a lot of cleaning up to do.  Thank goodness for our carpet cleaner!  He seemed to do ok over the weekend but then it hit him again on Monday.  He stayed home from school on Friday and Monday but was ok for the class party on Tuesday.  

Monday night, it hit Cole as David was rocking him to sleep.  All over the carpet and down the hallway, then again all over the bathroom.  I couldn't believe it.  The poor kid took it rather well though.  He went to sleep even with the loud carpet cleaner growling in his room.  So that took up most of the night, but I still had to finish getting organized for the Valentine's Day party!  I ended up going to bed around 4 am.  Let me tell you - I am getting old!  I used to be able to recover from that in a day or two - but no, I was feeling that loss of sleep for days!  

Tuesday after the party at school (which ended up going spectacular, thank you!), Trey let loose all over me right before we were to go out to eat.  That plan quickly changed and did carry out instead.  I got changed, got Trey changed, we both got cleaned up and he let go again.  He was not a happy camper.  

Thankfully, that was the end of the boys getting sick that way, but it then started out the other way.  Poor Cole and Trey!  It was a rough few days and the younger ones are actually still going through it.  Friday, the hubby came home not feeling so great and sure enough, in just a short few hours... I thought he was going to die.  I've never seen him so sick.  The poor guy was moaning in his sleep.  I took the kids to my parents on Saturday to give him a break and guess what?... yup, you guessed it, I ended up coming down with it next.  Thankfully David was feeling a little bit better and he took the kids to his parents the next day to give me a break and recover.  This stomach virus was no fun!  48 hours later and I think I'm feeling somewhat normal again.  Still a bit nauseous but I can function.  

Trey had a dr. appointment on Friday for his Synagis injection (RSV prevention) and we ended up back in the office today.  The poor kid had been sick all week but started getting especially fussy over the weekend.  It started Friday night and he just couldn't calm himself unless someone was holding him.  That makes it a bit hard to accomplish anything!  The pediatrician thinks that it's still the virus working it's way through him that is making him so fussy.  I just wanted to make sure his ears were ok and there wasn't anything I was missing.  I tend to avoid the dr's office because usually I know it's just a virus and there's not much that can be done for that.  The Dr's office is just germy.  I'd rather them not pick something else up.  Totally different with Trey though - I call or visit about everything!  With him I think I feel as though since the heart thing was missed, I just don't want to miss something else.  Like he's got another health mystery that's going on or something.  Anyhow,  they told me to put the kids on probiotics to help with their current issue.  Hopefully that will help.  

So for the past week things have just been really, really hectic and I feel like the house has just fallen down around us.  There have been some other small events happen that I wanted to blog about (I made baby food!) and have taken pictures of (I designed some shirts for the family to wear on Tuesday - Congenital Heart Defect Awareness Day!) but I just haven't had the time to upload the pictures or organize my thoughts... and I still haven't.  

This week though - we've got the Gastro Dr. on the schedule for Thursday.  Trey's feeding has been all out of sorts due to the stomach virus so it will be interesting to see what she says.  I've also noticed that his stomach noises have gotten rather loud and you can hear the sounds of liquids sloshing around echoing out of his mouth.  It's rather strange.  We had started thickening his formula with rice cereal but that ended up constipating him so that didn't work so well.  The one nice thing about the stomach virus was that it unblocked him.  

The other thing I'm doing this week... I'm going to try and take back my house.  Each day I'm going to pick a room and go through it.  Things just need to be cleared out.  I started a bit today but didn't get that far because my stomach was acting up.  However, I did bag up all of my maternity clothes to be donated.  I thought maybe it might be upsetting... but no, I'm done.  I didn't feel finished after Cole... I do have to say though, after Trey... I'm pretty sure that our family is complete.  I'm ready to start giving things up and moving down the road of our journey.  

Oh and wow - forgot to mention... on Valentine's Day... Trey was 5 months post surgery!  I am going to make his ECMO follow-up appointment at Inova this week!  I'm not sure exactly what that is just yet but when we left they told me not to forget to make the appointment with the Physical Therapy Team at the hospital.  I expect they'll just make sure that his function is ok and that the ECMO didn't have any negative effects.  I'll find out more about that visit this week as well.

I'll post more after his trip to the Gastro on Thursday and hopefully by then I'll have time to get my pictures uploaded from the camera!

The Faces of CHD (to honor American Heart Awareness Month - February)

In the past few months I have learned more about the heart and heart defects than I have learned in my entire life.  I've learned things I can't believe I now know!  I watch Lang and Altman (the cardiac surgeons) on Grey's Anatomy and I now can understand what they're talking about!  Not like that's anything amazing... but before Trey's heart condition - it was all just jargon to me.

I've started following blogs of sick children, periodically stop and pray for them during the day and am wondering how families I've never met, but follow through blogs, are doing now that they're out of the hospital.  It's a totally different understanding.

I've learned to survive in a NICU/PICU/hospital.  Heck, I lived at Children's Hospital with no TV and no food or drink allowed in the room for an entire week.  The whole time just watching my sick child suffer - totally unaware that he was most likely having small heart attacks and slowly falling into heart failure.  I watched my child's blood come out of his body through tubes, passing through a mechanical pump and lung and then returning to his body through his open chest.  I watched my child get soaked in blood when he started bleeding out of control (thank goodness I wasn't totally aware of what was going on until after the nurse had gotten it under control!  His gauze had already been a little bloody from the surgery and I had been warned he'd bleed due to the heparin, blood thinners, he was receiving so when it was dripping down the sides of him I just thought it was "normal"... as if there's such a thing!).  All of this has changed my view of being "sick."  I can now see it through an understanding.  I always knew it must be difficult to see your child like that, to live that way... but now I really know.

My child is my hero.  All my kids are my hero in different ways - but Trey... he's caused me to really want to change myself physically.  During the past 4 weeks I've been doing the Couch to 5K running program.  I am so not a runner.  I've always hated running.  My shins and ankles hurt when I run.  Well, Trey's hospital is sponsoring an 8K in April and I am going to run it (well, run as much as I can by April!).  I've always been a walker.  I can walk fast but I am now challenging myself to go beyond myself... and run.  I went and got fitted for running shoes through a running store, I downloaded a podcast on my iphone to help me train and I just started running.  And do you know what?... I can run!  My shins have been doing fine, my ankles are good and I'm enjoying it!  I really like running after dusk (I run the main road up and down in the streetlights on the sidewalk) so that people can't see how much I'm suffering and when I feel like I'm just going to fall down or give up... I think of Trey.  If he can make it through heart surgery, ecmo, open chest, drug withdrawal, a feeding tube for 4 months and painful reflux... I can learn how to run.  I can push myself past what I thought I could do and better my heart as well.  Heart Disease is the #1 killer for women in America.  Exercise can help prevent it.  I can definitely better myself for him - because he did it for us.  We are so much better because he is in our family.

Anyhow, I'm moving away from the point of my original post.  According to the March of Dimes, congenital heart defects are the #1 birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)  February is American Heart Awareness month and, specifically, February 7-14 is Congenital Heart Defect Awareness week.  In honor of this, 3 heart mommies...

Ruth from A Trip to Holland
Becca from The Stanley Clan and
Stefenie from When Life Hands you a Broken Heart

... have set up a Pinterest board to highlight "The Faces of CHD."  It is a virtual bulletin board of children (and some adults) that have had their lives changed through being born with a heart defect.  It's amazing.  It really is incredible to see the pictures of all these amazing children that have gone through so much in their short lives.  Not only that but the amount of different heart defects that are out there is mind boggling!  This little organ in our body can create so many problems (granted - it's one of the most important organs in our body to keep us living so that makes sense - but it really is a simple machine - it pumps blood through our body, that's all - but there's so much that can go wrong with it!).

So please, hop over to The Faces of CHD and check out the pins.  Everyone of them has a story and it's an amazing one.  While you're there you can see Trey's picture.... a proud survivor of a congenital heart defect.  He's come SO far in such a short time.  My little heart hero....

To any new readers... Trey was diagnosed with ALCAPA (a RARE congenital heart defect... 1 in 300,000) at 11 weeks late afternoon on September 12, 2011.  He had a heart catheterization procedure to double check the diagnosis on September 13 and the surgeon cleared his schedule to operate on Trey early the next morning, September 14.  ALCAPA stands for Anomalous Left Coronary Artery from the Pulmonary Artery.

Basically, the coronary artery normally comes off of the Aorta and supplies the heart with the oxygen enriched blood it needs to survive and do it's job.  Trey's coronory originated from the Pulmonary Artery instead.  The Pulmonary Artery takes blood that is deprived of oxygen (after it circulates the body) back to the lungs to pick up more oxygen.  Therefore, Trey's heart was getting blood that contained no oxygen and therefore, the left side of the heart (the side of the heart that pumps the blood through the entire body) was essentially dying.  He went into the hospital with his heart working at 7% (ideal is 70%).  He was in severe heart failure.

In order to fix the problem he needed open heart surgery to move the coronary artery from the Pulmonary Artery back to the Aorta.  Sounds easy, right?  Not always so easy.  Unfortunately, where it has to be connected is towards the back of the heart so when the heart is placed back into the body the surgeon is unable to see if the tiny coronary artery is kinked or not once the blood starts pumping back through the heart after surgery.  So they do all of the plumbing work but once it's back in they're blind to if it's actually fixed or not.  A kink meant - he would probably not survive.  Thankfully... Dr. Irving Shen rocked the surgery and all was fixed the way it needed to be!

This blog documents Trey's (and my family's) journey through the entire hospital stay.  I blogged my way through a month at Inova Fairfax hospital and the past 4 months of recovery at home (on a feeding tube... now completely weaned off of!).  To read our story from the beginning click here and then keep clicking on "newer post" at the very bottom of each post.