George's PDA (Patent Ductus Arteriosus), a ductus in your heart that is open in the womb, but generally closes when you take your first breath, popped open when he came home from the hospital. When your PDA stays open, blood that should go to the body is instead recirculated through the lungs. (Olivia's PDA was open when she was tiny, but closed with medicine, and Samuel's PDA was also open and had to be surgically ligated back when he was 2 pounds.) In addition, George also had an ASD (Atrial Septal Defect), or in other words, a hole between the two upper chambers of his heart.
He has been seeing a cardiologist since he came home from the NICU... it's great because the same hospital where they were all in the NICU has outreach clinics here, so we get to see the same cardiologists, but instead of a 90 minute drive, it's only a 5 minute drive! At our last visit the determination was made that it was time to get the PDA closed... George's pulmonary pressures were rising, and there is a point where if it's not closed it can cause more traumatic damage to the heart down the road. Also, with an open PDA, you have to work harder to do everything! George's work of breathing, eating, playing, you name it, was more difficult because he had to work so hard to overcome the direction of blood flow caused by the open PDA. The great news was that while Samuel's had to be ligated, which is much more invasive, because George is older this can all be done laparoscopically in the cath lab! It's crazy - they insert the cath in the femoral line and go from there... even though they are working on his heart, the only scars are two dots.
We checked in at 6am on December 30th - which is especially not fun when the hospital is so far away. But, George didn't seem to realize that it was so early :)
Hey... where are we?!
Who cares! I get mom and dad to myself!
They gave us a pager and periodically sent updates, which was great... especially because it was SEVEN HOURS after we kissed him good luck that he was back in the unit and we could come see him. Tears! And, the good news... we originally went in only to have the PDA repaired, but the doctor was also able to repair the ASD... yea!!
Seven hours later, after the procedure...
What happened? Where am I?
During George's procedure (did I mention it was seven hours? just checking... ), we were able to spend some time upstairs with Samuel :) He even made a Get Well card for George. (Have I mentioned the NICU team is incredible?!) I also snuck in to see him early in the morning while George was snoozing. It was "funny" to have one baby on the 7th floor and the other on the 8th :) Not sure it's actually funny, but I don't think they have a word for whatever it is...
George is feeling amazing! The seven hours was totally worth it :) Can't thank the team enough for taking the time to fix both the ductus and the hole! Six months of aspirin, a few follow-up appointments, and George will be good to go... no more procedures necessary :) Another good day - someone has been watching over us!
Thursday, December 24, 2009
Sunday, December 20, 2009
Things each of them can do that the other two can't yet... Samuel blows kisses (even after enduring more than most people ever have to imagine), George can pick up a cheerio (and anything else he wants to - my fine motor boy), and Olivia is crawling (mostly backwards, but we'll take it). Each of them has their own personality, even at the age of only 10+ months!
A little about Olivia's personality... besides the sugar-sweet-beauty that she is :)
Haaaaayyyyy! Girlfriend loves to smile... and loves to GET smiles even more!
This is what happens when you turn your back - she goes for the stack of bibs and George goes for the hard floor. Hello! There's a reason all of the toys are in the middle of the blankets! Oh well. I'm convinced she is the instigator :)
Olivia is also very focused. Not sure what I like best about this photo... the teething drool on her dress, the teething clamp she's got on that toy (and the cheeks that come with it), or just that her mohawk is awesome!
Back to loving to get smiles... mom, if you think this is funny, so do I!
And the crawling photos...From stretching... (her reach is at least twice as far as the average baby... I'm surprised she felt the need to learn to crawl!) ... to moving! I think she's just as surprised as we were :)
A Pro :)
Quick update - Samuel is still doing really well! He's had a few so-so days - we think he's had a bit of a cold - but seems to be bouncing back. Love it, he still manages to sneak out a few smiles and kisses even when he's not feeling his best. Also the g-tube has been a bit of a pain... first it fell out (not happy to learn that can happen), and now it's just still a little oozy. But, it seems to be working, Samuel is getting all of his nutrition through it... yea! No more iv's!
Tuesday, December 15, 2009
Other things George loves...
... on his back! George still isn't a big fan of his belly, but the boy can probably bench press three times his own weight :)
He still finds joy in the small stuff :) And in finding his way to the edge of the carpet! He may not like his belly, but George can roll anywhere he needs to go.
Friday, December 11, 2009
The surgery went so well! And even better - the first 24 hours after the surgery were smooth sailing. Samuel's nurse was joking with me today that she doesn't think he realizes he even had surgery :) He has been smiling and playing just like any other day. Go Samuel!
Morning Dad! DB and I got to the hospital bright and early... what an incredible thing we saw... our beautiful boy with no tape and no tubes. Just a sweet smiling face - ready to play :)
He was groggy after the surgery, as you can probably see in the photo :), but never inconsolable. What a brave, strong little man. Today Samuel is doing so well! His oxygen requirements and vent settings are already back to normal! His CO2 numbers are looking great and we've started the trache collar trials for short periods of time! And, they have even started feeding him through the g-tube and he seems to be tolerating very well. Incredible.
Wednesday, December 9, 2009
Crazy that we're excited about surgery. Don't get me wrong, I'm still a mom and therefore worried sick and a little panicked... but this is one of our last big hurdles before bringing Samuel home. We are staying focused on the big picture - the ultimate goal - and that is HOME!
The surgery could take up to 3 hours... unfortunately they won't really know until it begins. They will try to do it laparoscopically, if that works it will be relatively quick, if not then it will take a bit longer. It's really interesting, they can't determine whether or not they can do it laparoscopically until they get a good look because every stomach is different. Samuel will also get a bronchoscopy - a look at his airway - while he's under anesthesia. They don't anticipate any issues with his airway - it's always looked good before - but it's a routine thing they do with babies on traches. He'll get the bronchoscopy once per year as long as he's on the trache... if all goes well, this one could count as his discharge bronch! WOW! (We're still shooting for some time in January to come home - but just to hear the word discharge kind of takes my breath away :) )
Here we go!
George and Olivia did their homework on the upcoming surgery... The Playful Fairy is not the book you might think it is :)
Friday, November 27, 2009
What a year to give thanks! God and I talk a lot these days... a lot of our conversations are about thanks... for my husband, for babies, for family, for friends... for His patience, grace, and love... come to think of it, I'm not really sure why there is only one day per year devoted to giving thanks. Maybe we should start a second annual day of thanks!
I'll just keep it to the things that have happened this WEEK that I'm thankful for! Even that could take forever.... hmmmm...
Back to the great appointment that George and Olivia had... they go to the high risk clinic back at MUSC every few months for check ups. It's great - the team that runs the clinic is also part of the NICU team! They cared for Olivia and George when they were just 2 1/2 pounds, and now they still follow up to make sure they are developing at a good pace, and probably to check that other problems aren't developing, but we don't think about that :) Great news - they were very happy! Because of their extreme prematurity, G & O aren't exactly on track for being 10 months old, but they are catching up quickly. If they would have been born on their due date, they would only be about 7 months old. I know, strange to think about. The good news is they are developmentally ahead of being 7 months old and well on their way to "catching up". Yea!
I love holidays... lots of food, a few vacation days, and time to relax and laugh. But this year, holidays are also really tough. We celebrate every victory on our way to being together as a family... but we miss Samuel every day. Especially on holidays. Yes, we still get to visit... and you better believe we find ways to decorate the NICU... and the nurses definitely help Samuel know it's the holidays with funny art projects and outfits... but we miss him so much. DB is right though - we have so much to be thankful for... our miracles still amaze us every day and I hope we never forget that.
You might have turkey, but I got to try a lollipop!
When we arrived, George would not look away - he was infatuated with the waves! Dad was very proud :)
Olivia got to try out the new pack! Thank you swim team!
Yea, beach! Pampaw would be happy :)
A pack AND a chair! Did I mention I love it?!
George loves to eat from a spoon... so Omi helps him try out the potatoes...
...did I mention they were garlic mashed potatoes? He loved them!
That's quite the celebration over potatoes! Can't wait to see what happens if she tries the turkey! ha ha!