Heart Issues

Disclaimer - I don't know how to fix these pics! I will though!

So we found out Jack had Ds prenatally.  The next step was several ultrasounds and a fetal echocardiogram since many babies with Ds have heart issues.  (40% is what is stuck in my brain but as of right this minute I can’t back it up!)  Jack seemed great except the amniotic fluid was a little low a couple of times.  Even his heart was great.

And then he was born.  Within a few hours, it was determined that our little man had pulmonary hypertension and guess what else?  Heart issues.  Thanks a lot fetal echo (you worthless p.o.s.).  Our baby had a small to medium hole between the upper chambers of his heart (Arterial Septal Defect – ASD) and a medium to large hole between the lower chambers (Ventricular Septal Defect – VSD).  They had to be fixed.  Our goal was to get him big enough to undergo open heart surgery.  The problem was between the heart issue and the PH, he wasn’t able to stay alert enough to eat enough to grow.  So our guy had to have a feeding tube through his nose, or a ng tube.  The way he could sleep away while still getting food into his tummy.  Of course the Drs wanted to keep him in the hospital as long as possible but mommy was done with that place.  He was removed from the NICU not exactly against orders but I sure had to fight for him.  I think they were afraid I would steal him if they didn’t let me take him!  Jack removed his own ng tube a few times after we got him home, but after about a week, he was eating the required amount ON HIS OWN!

That was the end of Nov.  Less than 2 months later, our sweet baby boy underwent open heart surgery.  When the Dr called to say they were ready to set the date, I was a wreck.  I was shopping and cried right there in the store.  By the time we arrived at the hospital, I was okay.  I just wanted him fixed.  His surgery was on Tues. 

 

Wed was ugly; he was on morphine most of the day and so out of it.  He slept a few minutes at a time and would cry when he was awake  :( .  Thurs morning he was so different!  They moved him to a regular room, he was only on Tylenol, and that Sat, we went home!  4 days!

Thurs.

 

Sat., right before going home!

 

7days after open heart surgery!

Little did we know almost exactly 2 years later, the little girl that we would adopt was undergoing (in Ukraine) pretty much the exact same procedure!  The echocardiogram shows her surgery was to repair the same problems that Jack had.  Weird!  And even weirder, our cardio says it was a great fix.  Of course I don’t have photos of Dasha after her surgery and we weren’t there to hold her and whisper that it would be okay.  I hope someone was.  I am thankful every day that someone got her that repair.  But her scar looks even better than Jack’s!

Both of them now have near perfect hearts – the cardiologist says so :).  And today is the day, 5 years ago, that all of that started, Jan 23.   

So precious! Jack loves his sister :)

Cap’n Jack had a party

I found this post that I wrote (clearly) right after Jack’s birthday (at the end of Oct.) and never hit “publish”.  I contains some of the cutest pics of my baby!

Of course I didn’t plan anything ahead of time but at the very last minute we decided to invite a few nearby family members over for cake and ice cream.  We had (of course) delicious cake from Costco and balloons.  I had gotten him a few gifts so we kept those for party day and I think he was pretty happy.

Jack was good at ripping the paper off this year :)

Here Grandpa, hold my trash.

There’s one more?  Waiting……  SpongeBob!!!  Yay!

Jack blew out the candles before we finished singing so Grandma Rita sped up the song – it was the fastest version of “Happy Birthday” ever!

Precious!  Love, love, love him!  Hope this is an awesome year for you my big boy!

Horrific.

This is what all parents of children with special needs fear. This is what keeps us up at night. This is what causes our hearts to beat a little faster every time we take our kid to the Dr. We fight so hard for our children to be accepted in this world. We rejoice when we find each other because here are other parents who “get it”. They “get” that the love our kids inspire is more fierce, more pure, more protective. Not that any new momma with her baby won’t take your head off if you look at her baby cross-eyed, but we know we may have to defend our cubs way past the 18 yr old mark.

Please read this blog post written by a devastated mother. And then pray.

Almost Wordless Wednesday

Capes!!

(They were running back and forth in the kitchen watching them billow out behind them – so fun!)

What is clogging the toilet – revealed!

Ready???

Yep, it’s Scooby and the gang in the Mystery Machine!  Somebody decided it should solve the mystery of where everything goes when the potty is flushed!  (Can you see how Scooby is covering his eyes?  Cracks me up!)

Hopefully tomorrow our commode will be re-installed into the bathroom where it belongs and I can selfishly ban all potty-users from my master bath!  Tonight, it still looks like this:

 

(Andrew had friends over tonight and apparently forgot to tell them to use my bathroom instead of the hall bath.  One of the guys came up and I heard him yell from the hallway “there’s no toilet in here!!!”.  OMgosh I was rolling!  Probably not near as funny in the retelling but maybe you have to know the source.  Love ya Tony!)

What is clogging the toilet???

Okay, actually, at this point I know what is clogging the toilet but for about a week we did not!  Every night Allan would plunge the thing out and every morning we couldn’t use it because it would start to overflow.  Not a lotta fun I must say.  And being down to one crapper in a house with 5 people who use the thing on a regular basis plus 2 littles that I was trying to get to use the thing on a regular basis, well it was just crappy (yep, pun intended!).

So Allan finally decided to take it apart and find out what the problem was.  He got the potty off the plumbing and determined there was no clog in the pipes.  It must be in the throne itself.  Let’s check.

 

Turns out, this is an interesting project so Daddy got some “helpers”.

And then, the source of the clog was discovered!  (And will be revealed in the next post, hee hee.)  It would NOT come out.  One of the helpers was even called in to, well, help.

The helper was less than excited but bless her heart, she did it.  Hopefully, the next post will also show a newly re-installed family can :).

It’s a New Year

And I’m a bad blogger.  I’d like to resolve to blog more often and maybe I will be able to do that.  To be realistic, I’m shooting for once a week, sometime between Sun and Sat.  I’d also like to try doing Wordless Wednesday this year too.

And one more thing.  I love looking at my Jackson.  I could stare at his amazing, beautiful face all day.  I think all of my kids are exceptionally beautiful (of course!) but I love looking at Jack’s face.  There’s a little guy on Reece's Rainbow that I cannot stop looking at.  I love his face too.  He’s going to be 5 this year.  He needs a family to save him from hopelessness.  When we adopted Dasha, I promised my family I wouldn’t beg again, to save another child, but oh, I would go get him in a heartbeat if I could.  His name is Daniel on RR.  I don’t know what his real name is, or where, specifically he is.  But I’ll be talking about him, trying to raise money for him, trying to get his picture out there, so his family can find him.  I pray it is soon.

Happy New Year friends.