Reliving

It's strange now, when I go back and look at photos of Owen when he was first born, and right after his first surgery. I'm more upset now, when I look back, than I was at the time.

I've had two more babies since Owen. And neither of them has gone through what he has, thankfully. But it just shows me how it "should" have been, and what Owen has missed out on, and how much he's had to endure. And it makes me sad.

I've been going back through these pictures because I've been asked to speak about my experience with heart disease and Owen. I'll be giving this talk tonight, and using pictures in a Powerpoint presentation to illustrate. Hopefully, this will all go well. And when I say "go well" what I really mean is that I won't cry. =)

~Adrienne

Projects and a New Venture

Now that Camden is here and I am no longer pregnant, I feel fantastic! Even though I'm really tired most of the time, I still feel like I could take on the world. So apparently I am! Here's what I've been up to:

1) The laundry room. I've removed most of the old shelves, painted and put in a small cubby unit for shoes and such, and I've bought several wall cabinets. The last few steps are to remove the final shelf, install the cabinets, and purchase and put in a tall cabinet for the mop & broom, etc. I can see the light at the end of the tunnel, and I'm excited for how great (and organized!!!) it's going to be!

2) The living room. This one is a little tougher. I have the paint, and plan to get started this week. I've got a referral for an electrician, and will be getting an estimate to wire for the TV to be mounted above the fireplace. That's the tough part - I want to move the TV up there, and Mark doesn't. I simply want to get the TV up off the floor so we can open up the room a little more. Mark is agreeable to getting the estimate, so we'll see what it is and decide from there. Otherwise, it's just paint and curtains... and probably someday soon replacing the carpet as well. That room certainly sees a lot of traffic!

3) The master closet. This will be physically the most difficult. I'll be removing all of the shelving the builder installed, painting, and putting in a new custom configuration of shelves, rods, and drawers. This project will go in stages, and I'll start once the laundry room is completely done.

I'm really excited to complete these projects. As one friend said, it's so much easier to motivate yourself to keep your home clean and organized when you've put hard work into it!

Aside from all of that, I've also become a stylist for Stella & Dot. This is a jewelry company for whom I'll do home-based trunk shows. I LOVE this jewelry! It's amazing how much more put together I feel when I'm wearing a really pretty piece of jewelry, and this company has a LOT of pretty jewelry. I'm not looking to make any money, really, just have some fun, make some friends, and earn some jewelry. In fact, if I were hoping to earn a true income from it, I wouldn't have joined. I simply don't want to put that kind of pressure on myself (especially right now!) But I think I'm going to have a lot of fun doing it, and I'm really looking forward to an excuse to spend time with other grown-ups and make some new friends in the area. I haven't been great about that since we moved.

So now that you know all about me, what are the kids up to? Well, Owen is doing SO MANY exciting things! He's actually starting to talk, which is just amazing. He's also doing more with his mobility. He's *almost* crawling on his hands and knees vs. his army crawl that he's always done. He's also pulling up to kneel much more often and easily. It's so great to see him feeling good.

I think Gavin is having a little baby sister-induced anxiety. He's a bit clingier than he had been, and wants me to hold him and cuddle him a lot. I, of course, LOVE cuddling with him (Owen is not really a cuddler) but I obviously can't do it as much now that the baby's here and I'm nursing her. So I'm just trying to fit in extra cuddles and kisses between nursing and chores, and I'm hoping that will be enough for now. Gavin's also getting really good at shape sorters and puzzles, and he can count to ten.

Baby Camden is already changing so much! She's more awake and alert, and she's just starting to smile at us. I'm just in awe of her.

We're having a busy month of January, but life is great and we couldn't be happier to have these three precious children in our home!

-Adrienne

Happy December!

Can I just say, I'm so excited December is here?! It's such a fun month! While Christmas shopping and preparations can be stressful, I truly enjoy the challenge of finding that great gift for each special person in my life. It's especially fun when I can get creative and surprise them with something they really love! I usually put a lot of thought and care into choosing and wrapping Christmas gifts, and it's that much more fun to watch people unwrap them.

Santa already has a list for the kids, and most of our Christmas cards went out today. There are still a few people I need addresses for (if you are one of my friends who has moved within the past 6 months, I'm talking to you!) Our Christmas decorations are up, and I love turning on the Christmas tree lights and relaxing in the living room. I started making Christmas cookies yesterday, and I hope I have the energy to make lots this year! This is the year I plan to tackle my granny's famous nut rolls, finally!

Mark and his dad painted the baby's room last weekend. I'm still getting used to calling it the baby's room instead of the guest room. Mark put together the crib (yes, we now have THREE cribs in our house) and my friend Andrea helped me get the mattress in it. I washed all of the 0-3 mos. clothes, and I think we have enough, depending on how much she spits up!

Owen saw his regular pediatrician today. He didn't have to get any shots, but the doctor is very concerned about his continued vomiting. So she's going to contact his developmental pediatrician to discuss a trial of Reglan. Years ago, I would have been against this for him, but now I'm open to it. SOMETHING has to change for this child; he simply cannot go on vomiting like this, several times a day, forever. Not to mention the fact that this is something our growing family cannot continue to handle, either.

Owen also had a great therapy session with his OT and DT earlier this week. He did fabulously and was so fun for them to work with. I wish every session could go that well! We are getting re-started with speech tomorrow and PT on Monday. I hope he is the sunny version of himself for them, too!

Baby Girl hasn't shown any new signs of arriving anytime soon, so we're still looking at December 12th for my induction. Gavin is still as cuddly and talkative as ever, though we're starting to work on not hitting. In all, we're having a good week, though I sort of wish I could fast forward to the 12th!

These Days...

These days... I have at least a dozen contractions a day. Sometimes they're spread way out, and sometimes they're right on top of each other.

These days... Baby Girl has DROPPED! She's down so low that the nurse often has trouble getting a steady reading of her heartbeat for the NSTs. I have to lie almost flat on my back for her to find it.

These days... The Christmas decorations are up at our house! The shopping is almost done! I'm excited to enter the holiday season with a new life in our house!

These days... Owen feels more and more like himself. He sings songs with us (or rather, he does the motions). He laughs and plays. He crawls around. He's making more vocal sounds. And he's willing to taste food.

These days... Gavin is a clingy, snuggly little guy. He does NOT like us to walk away from him, and has reverted to demanding that I carry him up and down the stairs (he can, and used to, do this perfectly fine on his own a couple of weeks ago). He has so many words! He says "more, peas" (more, please), "ah done" (all done), and his favorite: "no." He pats Owen lovingly on the head, but he also steals his toys. Today he spilled some milk on the floor, walked over and got one of Owen's cloths, and bent down to wipe the carpet. In many ways, he will be our oldest child, and I know he'll be a fantastic brother to Owen.

These days... I don't know what to pray for when it comes to Owen. His surgeries are over; there is not much more that can be done for his heart. Do I pray for a long life? Or a life with minimal pain and procedures, even if it means he leaves us sooner? I get the impression that he won't be able to have both, and as his mommy it sometimes makes me yearn to place him in Jesus' arms to receive His healing and be free of all this. Then I feel guilty for even considering that Heaven may be the best place for him.

So I guess these days, as always, we could really use prayer that God will guide us in the right direction as a family, that He will make it clear what decisions we should make to follow His path. After all, Owen WILL be in Heaven someday. Mark and I have a responsibility to continue to follow God's will so we can get there, too.

Cardiology Update

Today I took Owen to see his cardiologist. After a chest x-ray, EKG, and ECHO, the verdict was in: Owen's heart looks great! We're obviously very happy with this outcome, but it's not quite that cut-and-dried yet...

Even though Owen's heart function looks great, and he's pinker than ever, his sats are still only 75%-ish. Not what we had hoped for or expected, and not good. I spoke with the surgeon about this today, and he said that Owen's x-ray actually still shows some shadows, indicating that Owen still hasn't fully recovered from his post-surgical infection. So what does this mean? For now, it means that we continue our current drug regimen, and give him more time to heal. We go back to the cardiologist in 1 month, have another chest x-ray, and possibly change things up then.

In the longer term, it means that Owen's fenestration may have to be closed soon. This involves a cath and overnight hospital stay. In our world, this is soooo not a big deal. Weird to say that, when many parents freak out over their little ones getting ear tubes! =) The fenestration closure is something that's on the table, and I'm sure we'll revisit it at the next appointment.

In all, it was a good visit. I was hoping to get rid of some of these post-op meds, but it will just have to wait a little longer. At least Owen only has to have the penicillin for 2 more days - it's wreaking havoc on his poor little digestive system! =(

Whew...

It's been a long couple of weeks, and yet somehow still a whirlwind. Owen is home from the hospital. He came home last Wednesday on oral antibiotics and with his same post-op heart meds. We follow up with cardiology next week. Overall, his operations were successful. The problem now is that we simply can't control his pain. We were told when we left the hospital that we should keep him on scheduled Lortab/Motrin for the first 24 hours, then go to Motrin only with Lortab as he needs it. Well, he has continued to need it up to and including today, and we only have about 1 dose left. The poor kid is just in pain, and he usually is not calmed by Mom and Dad or any of his favorite toys. We're definitely getting him weaned off the medication; it's just taking longer than we had anticipated.

As we settle back into our routine, Gavin has changed a bit too. Although I know he loved his time away with Mimi, he definitely is more clingy since he's been back. He cries more readily if we walk away from him, or if we're holding Owen instead of him. It's going to be even more of a shock to him once the baby comes. We'll just have to make sure to give him lots of hugs and kisses, even more than we already do.

And speaking of Baby Girl, the NSTs are going fine. She is always reactive and looking great. As of last Sunday, though, I have been having contractions. I'm sure they're just Braxton-Hicks, but they're still uncomfortable. Actually, I'm having one right now. Goodness, am I ever ready for this baby to be born!

Since being home, I've felt like I'm able to make more progress on getting ready for the baby and Christmas. I have my Christmas shopping about halfway done. And the truth is, we have almost all the supplies we need for Baby Girl, so we're ready in the most basic sense. But of course I'm nesting, and I want to make sure the room is just so, and the house is clean, etc. I might need not to expect so much of myself, but it's driving me crazy that everything isn't done and perfect around here.

And that's just sort of where we are, with less than 4 weeks to go before Baby Girl joins us!

PICU Day #6

I find it somewhat darkly amusing that we've spent more time in PICU for this complication than we did after Owen's actual heart surgery.

Owen continues to look better since his procedure yesterday. He is draining a substantial amount of fluid, but not gobs and gobs. He's had about 90 mLs come out since the procedure. He is breathing much more easily and getting a little more feisty. But he still glares daggers at anyone who comes near his bed.

We could have moved to the floor today, but the floor is full. So we're hanging out in the PICU until someone goes home from the floor. It likely won't be until tomorrow that we get to move.

I have a slight sore throat today, and I'm hoping hoping hoping that it's just irritated and not progressing toward strep throat. Wouldn't that be fun, on top of everything else??

There's not much more going on right now; just playing a waiting game at the moment.

-Adrienne

Sleeping

Owen is currently sleeping peacefully, for just about the first time in two weeks. He went to the OR this morning for a VATS procedure. The surgeon used a video camera to guide him as he put his instruments through small incisions in Owen's side and cleared out the "gunk". He described it as hard cheese. There was also a mucoid layer covering the side of Owen's right lung, and the doctor was also able to remove that layer. Owen seems MUCH more comfortable, and has been sleeping since he got back from surgery about 6 hours ago.

At this point, we are back to where we were a couple of weeks ago. Owen has a chest tube to drain the remaining fluid (and any more that may build up). The first step toward home is for this drainage to dry up and for x-rays to confirm that he looks clear. Then the tube can be removed. The next step is for him to get converted to oral antibiotics. Somewhere in there he also has to tolerate coming off oxygen. Then we can go home.

We're back to not knowing how long any of this is going to take, and while that's frustrating, it's also so nice to know that, for the moment, Owen is in recovery mode again. We hope and pray this will continue and that he can come home very soon! We miss being home as a family... Plus, I keep having somewhat startling reminders that Baby Girl is coming in less than 6 weeks and we are sooo not ready!

-Adrienne

Surgery

It's been a long day. This morning, Mark's dad brought Gavin to me at the hospital. He then sat with Owen while I took Gavin to his well child check-up (everything great there). I was really hoping to have some concrete answers before I left with Gavin, but no such luck.

When we returned, it was a different story. Owen's heart surgeon had decided to try placing a chest tube to drain the fluid (which is growing group A strep, an easy bug to treat). He tried this at 4:30, without much success. So now we are looking at a surgical procedure tomorrow to open up Owen's chest and try to break up some of those "compartments" where the infection is. Then it can drain fully, and the antibiotics should take care of the rest. We are looking at antibiotics for 3-4 weeks, but given the fact that it's an easy bacteria to treat, we should be able to switch to oral and go home with it, rather than wait out the course in the hospital.

But... My guess is we won't be going anywhere until at least the end of the week. =(

My mom took Gavin back to Seymour with her, so it will be nice for Mark and me to be able to be here at the same time while Owen has his procedure. I'm sure Gavin will have another grand time playing around the coffee house and eating ice cream. I miss him already, though.

We are still living at the hospital with a very grumpy and miserable little boy. Surely *sometime* he's got to start feeling better? I personally have not seen him smile in 2 weeks.

-Adrienne

In Limbo

Well, we still don't know much.

Yesterday, Owen had a CT scan to determine where the fluid in his chest was located. Turns out it's in loculations (sp?) along his right side. This means there are several pockets of fluid, as opposed to one large area. Yesterday evening, the ICU drs. sedated Owen and removed some of this fluid by inserting a needle into his side. This fluid was being sent for testing to determine whether it was simple post-op fluid accumulation, or whether it was an infection. We have not heard the result of this test.

Our cardiologist told us if the fluid is found to be an infection, Owen will have to have a procedure called a thoracotomy performed in order to remove it. This involves opening up his chest to get all of the infected fluid out. My goal this morning is to find out for sure whether Owen needs this.

In the meantime, I think we'll be here at least another day before cultures/sensitivities come back (and that's an optimistic estimate).

Oh yeah, and he could still have pneumonia on top of all this. At this point, I'm starting to worry that he won't make it home before I have to go back to work on Sunday. =(

-Adrienne

48 Hours

...is how long we were home. Yesterday, when I got Owen up from his nap, he just looked terrible to me. He was sweating with the labor of breathing, and his abdomen and face seemed much puffier than before, as though he were retaining fluid. So I paged the cardiologist, who met us at the ER just to check things out. I was positive I was just being a paranoid mom and everything was fine. Then the doctors did the following math:

White count of 26 + O2 sats of 67 + super fluid overload + hazy chest x-ray = Readmission

Poor bubby. So he spent the night in the ICU, and he is receiving at least cefotaxime. I also heard the dr. mention vanc, but never actually saw that get started last night. Mark and I both stayed here last night, and Mark's dad very graciously stayed with Gavin, who seems to have a little stomach bug of his own.

So, hopefully today we'll get more of what the plan will be for Owen this time. If his cultures come back growing anything, he'll definitely need a full course of antibiotics. Depending on what they grow, we could maybe go home in a few days with him on orals. We'll see.

-Adrienne