Thursday, December 30, 2010

A Birthday and a Homecoming

My best friend, the love of my life, turned 32 today. She's the most amazing wife & mother. My boys & I are so lucky she's ours. :)

Linus's echo on Tues showed a slight amount of improvement. This is not amazing news since they've now quadrupled his Capt0pril dose in the last 9 days. I was sort of hoping there'd be more than "slight differences" on screen. However, since it wasn't worse, they said we could wait to see our regular cardiologist so he can create a new action plan. Upon hearing this news, Trina and I decided that we should bring Linus home. Trina has been living at the hospital and caring for him full time. She was feeding, changing, bathing & medicating him. Why not do that at home? He was no longer wearing EKG leads, just a pulse oximeter and an NG tube. We talked to the cardiologist about it and he said they could teach Trina how to run the feeding pump and how to drop a new NG tube in case he pulled his out. She's a quick study and had everything down pat in no time. They gathered all of the meds and equipment he needed and she brought him home this afternoon.

It's so amazing to have everyone under one roof again. We're still trying to find our stride and get a good pattern down for feeding and caring for all three boys simultaneously. Especially since I'll go back to work tomorrow and Trina will be flying solo against the trio. Having only two of the boys home has been like a vacation as far as the work load. "Twins" are so easy! Two babies? No problem, I have two arms. I can feed, hold, pat, burp or rock two babies with ease. Three babies? Um...two arms...damn. Add in Linus's new "gear" and it can get a little hairy. Never fear, though. Trina is amazing and will have us back on track in no time.

Supermom feeding all three boys before Linus's hospital trip.

Sunday, December 26, 2010

First Christmas & Linus Update

Well, the boys' first Christmas didn't exactly go like I thought it would. I was picturing more joy and merriment and a little less worry and loneliness. My mom and I were at home with The Big Boys. We opened a few gifts sent by family next to a 2ft tabletop tree. Simon and Dexter slept through half of it. I made my regular Christmas fare in much smaller portions, but somehow it didn't taste quite right. Then I burnt the sweet potatoes and nearly cried. It certainly didn't feel like Christmas to me. Trina was at the hospital with WeeMan. She's been staying with him since Friday while I've been off work and able to watch his brothers full time. I hate that, once again, our family is split up.

Going back to work tomorrow is going to kill me. Holding and cuddling and caring for my sons is the only thing keeping me sane and grounded right now. Without them, I'm afraid I'll crumble. After work I'll drive to the hospital to see my wife, hold my little man and pick up breast milk for his brothers.

As for Linus, he's proving to be a troublesome patient. They've more than doubled his meds with no major improvement. His lungs are more clear, but his echo was still bad, he still breathes too rapidly, has retractions and is much too tired to eat a full bottle. He usually gets about half down before needing the rest put down his NG tube. He's blown or clotted 3 IV's now and is currently awaiting the Kangaroo Crew to come put in his 4th. He's scheduled for another echo on Tues. If it's very bad, he'll have his 4th heart catheter procedure on Wed. If they think he can wait a week, his regular surgeon will be back from holiday and will do it then. The hope is after they stretch his aortic valve, again, there will be less pressure in his left ventricle and his mitral valve won't leak as much. If the leakage is still in the "severe" range they'll be forced to do open heart surgery to repair it. This scares me half to death. I know open heart surgery is in his future, we're told it's unavoidable, but I'm just not ready. Will I ever be? I seriously doubt it...

Simon & Dexter opening presents from their cousin, Bailey.
Don't they look excited? :)

Poor Linus spent his Christmas on the cardiac floor of The Children's Hospital. At least he had his mommy with him.

Saturday, December 25, 2010

Tuesday, December 21, 2010

Dammit: Updated

Linus had been doing very well since coming home from the hospital. He's been growing like a weed, starting to smile, pooping like a champ and acting like a "normal baby" in general. Then last week we started noticing the warning signs they told us to watch for when he was discharged. They were subtle and mostly revolved around his feeding. He slowed down on his eating, then began leaving more unfinished bottles than finished ones. As the days went by, his symptoms got worse and I got more worried. I kept thinking, thank god we begged for a cardiology appointment even when we believed we may be making mountains out of mole hills. He started choking more often due to rapid breathing while eating. Then 2 nights ago he looked distinctly grey after throwing a temper tantrum. Last night he started having retractions. All signs pointed to his congestive heart failure worsening. These were the exact signs that had him in his second catheter surgery. I've been trying very hard to tell myself that he'll be fine and that he probably just needs his meds tweaked. Sounds logical since he grew from 5lbs14oz to 8lbs8oz since his last dosing audit.

I took the day off of work to watch Simon and Dexter so Trina could take Linus to his appointment with Dr. HappyDance. I've been anxiously awaiting and equally dreading his findings. I just got the call from Trina a little while ago. Linus's echo looks worse than before and his xray showed that his lungs are wet. They're admitting him for observation while they increase his meds. Hopefully they can get his congestive heart failure back under control without sending him back into surgery...

Update: Just heard from Trina again. Apparently Dr HD said he was "very disappointed" with Linus's echo results. His aortic valve seems a little more narrow than after his last catheter and his mitral valve is leaking like a sieve. HD is going to talk to his team about different courses of action. These include higher medication doses, maybe another balloon catheter to stretch his aortic valve and possibly open heart surgery to repair the mitral valve. For the moment, Linus had an IV put in for general fluid and medication maintenance and an NG tube placed so he doesn't have to work so hard eating. I can't believe my baby isn't home anymore. :(

Friday, December 3, 2010

My Little Men

I love these babies more and more each day.
How could I not when they look at me like this?

Wednesday, December 1, 2010

2 Months

The boys had their 2 month check up today complete with vaccines. They were not impressed. Here are their new stats. These boys are growing like weeds!

Simon: 9lbs 10oz, 21.5" long
Linus: 6lbs 11oz, 20" long
Dexter: 9lbs 15oz, 22" long