Owen's First Birthday

I sit here before my laptop trying to think of what to write.  The past few days I have done a lot of reflecting on the past year, okay, the past year and 9 months.  Kevin and I became pregnant right out of the gate of marriage (I guess that's the best way to refer to it).  We weren't really trying, but not preventing and we surely didn't expect to become pregnant right away.  All of that aside, we were excited for the chance to bring a sweet little baby into this world and to nurture and raise our child to the best of our abilities.

I think about the people we were before Owen was born and realize we have grown so much in a short period of time.  We went from being newlyweds that a lot of people wondered "How did they come together" to a complete unit.  A friend of mine said it perfectly today.  Kevin and I have grown into a unit, we move together and are synchronized beyond belief.  With a child like Owen, that is a requirement.

It really is a case of make it or break it when you have a child with a congenital heart defect(or any other serious health issues).  There are many parents that end up splitting up because of the added stress of having a special needs child, but I can honestly say it has brought Kevin and I together.  I feel like this journey we have been on with our sweet and sassy Owen has strengthened our marriage and we are prepared to take anything thrown our way.

Being able to reach the milestone of Owen's very first birthday has really shown us how blessed we are.  Before Owen was even born, we were told by doctors "If you make it through the first year, it is smooth sailing."  This past year has been the most difficult year of our lives.  Facing two open heart surgeries, three hospitalizations, numerous visits/drives down to Children's hospital for treatments, multiple echos, hundreds of thousands, if not a million dollars worth of medical treatment/care, hundreds of baby aspirin tablets, constant recording of daily intakes and weight recordings, Owen refusing to drink bottles while awake, Owen flat out refusing to take bottles, trying to find creative ways to get Owen to drink bottles to maintain proper fluids, and everything in between.  We have been trained in CPR and how to spot heart failure without machines, as well as how to draw up medications and make higher calorie formula concoctions. We are super parents for sure.

Owen has come so far in the past year, you wouldn't even notice he has only half a heart!  He is the most amazing child I have ever encountered, and yes, that could be a bias statement, if you didn't think it also!  Our sweet little man is finally 1, the age I have been counting down to in my head for months.  On difficult days I would think and repeat to myself "only___ months until he is 1".  It feels like we have been running a year long marathon and have finally reached the finish line.  We are loving this less stressful finish line. I just can't believe it. Owen is 1.  Finally.  I can't believe the amazing little boy our baby is turning out to be.

Watch out world, because Owen is going to grab you by the horns.

It's hard to believe that our little smurfy looking guy was once so tiny!

G-tube territory May 9 3:21pm

Hey everyone, sorry this took so long to post, but Owen didn't get rounded on until 1pm and then I was trying to keep Owen calm and I ran down to eat lunch.  Anyways, this morning I decided to sleep in since I knew Brittney was working today and since Kevin wasn't here practically poking me with a stick to get out of bed and to the hospital.  I figured I would sleep in since once we are home there won't be much sleep for me! When I got here, Owen's speech therapist was just leaving she said she fed him and that he took 48 cc's. Owen was also asleep so I let him lay in bed until he started fussing. 

Grandma and grandpa Klein came down today for a visit! They haven't been down here since the day Owen had his heart surgery because they were watching our dog, Bear and my dad was sick for a few weeks. So the docs came in to round when my parents were here, luckily I had just handed Owen to my mom. 

They were surprised to see that Owen only took in 54% of his feeds by mouth yesterday vs the 75% he was at the day before.  But I and some of the nurses are starting to realize that Owen has a pattern. He will feed really great for a few days and the he will start to get tired and his feeds will slow down and he will take less per feed.  Last time his bnp went way up because he was stressed out about the feeds. That being said, he is getting a gtube put in as soon as his bnp is in a more comfortable place. I would rather be sent home with a gtube in place so we can make sure he is getting the volumes he needs so his shunt doesn't fail and so we can give his meds through it when he refuses to take them by mouth.

I know a lot of you are worried about the gtube, but it is temporary and it really is not a bad thing, a lot of the heart kids have them and it actually makes life a lot easier for the heart parents because they don't have to worry about dehydration. Plus in Owen's case chicks dig scars. ;)

Owen has been smiling a lot more, mostly when he is falling asleep, but it keeps making my heart melt. I haven't been quick enough to catch a picture of it yet though.

Anyways, back to rounds, they are going to go up on his captapril again today and wait to see where his bnp is at tomorrow to determine when his gtube insertion will be.

Two of the picture I am posting were from our walk yesterday. I had to carry him around the floor for a whole yesterday, because he was not digging the stroller. I eventually got to put him in the stroller and then he had a mad look on his face.  Hah.

Today's update May 8 10:50am

Hello everyone!  So Kevin went back home last night, so it's just me and Owen until Friday.  As you all read in the previous post, they went up on Owen's dose of Captopril last night.  He actually did pretty well with it (even though I didn't notice a difference...but it could take a few doses to notice a difference).  Last night Owen and I snuggled a bit, and then I sat him up in the boppy for a bit, he really enjoyed that. Plus it was good practice for his neck muscles! He was sitting up in it for almost an hour before he got fussy. :)

I left the hospital around 11pmish to go back to the RMH and get some sleep.  This morning I got back here around 9 and the nurse was just getting ready to weigh and measure him! He is down a little bit from yesterday.  His weight is 8lbs 8oz. and his height is 22 and 3/4 inches! :) He also threw up after his bottle so I had to change his clothes.

Round time! They aren't changing anything at this time.  He just needs to work on his feeds. They did redose his clonodine, because he threw up shortly after getting his meds earlier. Other than that he is doing great.  Hopefully his feeds are what they want to see soon so we can come home and snuggle with Bear. Th picture in the carseat was from a few days ago when we went for a walk.

Update 1:02pm April 5th

Bridget just called again with another update on Owen's surgery.  They are all finished with the repair and are starting to rewarm his body.  Once he is warmed back up they should be ready to take him off of the heart and lung machine.  Then they just have to make sure everything is flowing properly and make sure there aren't any bleeds and his surgery is almost done.  The hard part is over.

Update 12:04pm April 5th

Bridget called with another update on Owen's surgery.  They are just finishing up with the aortic arch repair and are moving right along.