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.
Friday, November 26, 2010
Monday, November 22, 2010
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! =(
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! =(
Monday, November 15, 2010
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!
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!
Thursday, November 4, 2010
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
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
Wednesday, November 3, 2010
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
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
Monday, November 1, 2010
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
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
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
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