It's official: we're going home tomorrow! It would have been today, but I requested an evaluation from a speech therapist, and they're not here on weekends. So we'll have that tomorrow, and then we'll be discharged.
You'd think I'd have learned by now, but I'm still marveling at how God *always* exceeds my expectations. I mean, post-op day #5 and ready to go home?? Our Lord is mighty indeed!
We give thanks to God for Owen, for His healing touch, for our surgeon Dr. Abraham and his staff, for the nurses here at St. Vincent, and for our families, friends, and workplaces, all of whom have helped us weather this week. Please lift up a prayer of thanksgiving for these intentions on our behalf. We *really* want God to know how much we appreciate these blessings!
Showing posts with label Glenn. Show all posts
Showing posts with label Glenn. Show all posts
Sunday, October 26, 2008
Friday, October 24, 2008
Say What?
This will be a short update; I'm waiting for Mark to get out of the shower so we can go turn in our key.
Today we will be moved to a regular pediatric floor. Owen now only has his EKG leads, saturation monitor, two IVs, and his surgical drain attached to him. He still is sounding pretty congested, but it's staying out of his lungs.
The big surprise of the day came out of the visit we had from our cardiac surgeon this morning. He busted out with, "I think we'll be ready for discharge Sunday or Monday, let's shoot for Monday." To which I replied, "As in THIS Monday?!" Apparently, yes. He's probably being a little overly ambitious; I imagine we'll really be discharged more like Wednesday. Still, it's great to hear he's doing so well. I overheard rounds this morning, and the NP presented Owen by saying, "Owen had the Glenn on the 21st and he's really done great since day 1." What awesome words! We are excited for Owen to continue to heal and to get home quickly. After all, he has his first Halloween to celebrate!
Today we will be moved to a regular pediatric floor. Owen now only has his EKG leads, saturation monitor, two IVs, and his surgical drain attached to him. He still is sounding pretty congested, but it's staying out of his lungs.
The big surprise of the day came out of the visit we had from our cardiac surgeon this morning. He busted out with, "I think we'll be ready for discharge Sunday or Monday, let's shoot for Monday." To which I replied, "As in THIS Monday?!" Apparently, yes. He's probably being a little overly ambitious; I imagine we'll really be discharged more like Wednesday. Still, it's great to hear he's doing so well. I overheard rounds this morning, and the NP presented Owen by saying, "Owen had the Glenn on the 21st and he's really done great since day 1." What awesome words! We are excited for Owen to continue to heal and to get home quickly. After all, he has his first Halloween to celebrate!
Wednesday, October 22, 2008
The Glenn Update #2
I'm so sorry I didn't get a chance to post last night! I tried several times, but the computer was always occupied (there's only one.)
Owen continues to do superbly! He was extubated yesterday afternoon with no problems. He is down to 1/2 liter on his oxygen, which is great! His lungs continue to sound clear. His pain seems to be generally well-controlled, though it's hard to tell. He hasn't been fed yet, and his arms are tied down out to his sides so he can't get at any of his tubes or wires and pull them out. So even if his pain is controlled, it's easy to imagine that he may be highly uncomfortable and angry! Even so, he's had several calm periods where he just lays there and looks at Mark or me. So we think we're moving in a good direction.
He already looks quite different to me. For the past couple of weeks I had been noticing that his legs looked somewhat purple and mottled. That is completely gone now. His skin looks flesh-toned and perfect! Although it appears he has inherited his mom's fair complexion, poor guy. We'll have to be careful about the sun!
We are spending the day here with Owen at St. Vincent. The plan is to get his Foley catheter out, *possibly* get his art line and cardiac line out, and feedings should start any minute. We're doing low-volume continuous feeds to begin with, to reduce the chances of him vomiting. We're taking it one step at a time, but so far Owen is exceeding expectations all around!
Owen continues to do superbly! He was extubated yesterday afternoon with no problems. He is down to 1/2 liter on his oxygen, which is great! His lungs continue to sound clear. His pain seems to be generally well-controlled, though it's hard to tell. He hasn't been fed yet, and his arms are tied down out to his sides so he can't get at any of his tubes or wires and pull them out. So even if his pain is controlled, it's easy to imagine that he may be highly uncomfortable and angry! Even so, he's had several calm periods where he just lays there and looks at Mark or me. So we think we're moving in a good direction.
He already looks quite different to me. For the past couple of weeks I had been noticing that his legs looked somewhat purple and mottled. That is completely gone now. His skin looks flesh-toned and perfect! Although it appears he has inherited his mom's fair complexion, poor guy. We'll have to be careful about the sun!
We are spending the day here with Owen at St. Vincent. The plan is to get his Foley catheter out, *possibly* get his art line and cardiac line out, and feedings should start any minute. We're doing low-volume continuous feeds to begin with, to reduce the chances of him vomiting. We're taking it one step at a time, but so far Owen is exceeding expectations all around!
Tuesday, October 21, 2008
The Glenn Update #1
Well, today has gone much more quickly than I had imagined it would, and I haven't posted any updates yet! First thing's first: Owen is out of surgery and doing fine. We have not yet gotten to see him, but according to the surgeon everything went as expected and he remains stable. They are doing a chest X-ray now, and if that is clear then we will get to go back and see him. Should be within 45 minutes.
Now for the longer version of today: We brought Owen in to St. Vincent at 6am. He was grouchy this morning, but who wouldn't be after waking up at 5am?? He was such a trooper through having his blood pressure taken and saturations read. The nurses took him back to the OR at around 7:15. Surgery itself got underway at 9:10. We had an update at 10:30 that things were going smoothly, and then we had another at 11:45 saying they were wrapping up! Like I said, this morning went quickly. We grabbed some lunch and headed up to the PICU waiting room. Our surgeon has been in to talk to us and seems to think everything went well. We're just waiting to get back and see him. Mark's parents and sisters are here waiting with us. We are a little nervous, because as the OR nurse said, the next 24-48 hours will probably be a roller coaster. But mostly we remain calm and thankful for the enormous blessings that have been given to us: that Owen has been stable for so long, that he has come through surgery this morning so well, and that we have had six glorious months with him already. These gifts are ours through the grace of God. Thank you so much for all of your prayers. I will update again once we have seen Owen. That is, if I can tear myself away from his side long enough! =)
Now for the longer version of today: We brought Owen in to St. Vincent at 6am. He was grouchy this morning, but who wouldn't be after waking up at 5am?? He was such a trooper through having his blood pressure taken and saturations read. The nurses took him back to the OR at around 7:15. Surgery itself got underway at 9:10. We had an update at 10:30 that things were going smoothly, and then we had another at 11:45 saying they were wrapping up! Like I said, this morning went quickly. We grabbed some lunch and headed up to the PICU waiting room. Our surgeon has been in to talk to us and seems to think everything went well. We're just waiting to get back and see him. Mark's parents and sisters are here waiting with us. We are a little nervous, because as the OR nurse said, the next 24-48 hours will probably be a roller coaster. But mostly we remain calm and thankful for the enormous blessings that have been given to us: that Owen has been stable for so long, that he has come through surgery this morning so well, and that we have had six glorious months with him already. These gifts are ours through the grace of God. Thank you so much for all of your prayers. I will update again once we have seen Owen. That is, if I can tear myself away from his side long enough! =)
Thursday, October 16, 2008
Prayers Needed
Please say prayers for the Simmons family. They also have an Owen with HLHS. He is just a few months older than our Owen. He's had the Norwood and the Glenn, and lately has been having some not-so-great heart function. He had a catheterization yesterday which showed he needs a heart transplant. It may be soon, or may not happen for months to years, but at some point he's going to need one.
This is our biggest fear. Our Owen will not be eligible for a transplant because of his chromosome abnormality. Transplants are rarely made available for individuals with chromosome abnormalities or mental disabilities. This is because the drug and care regimen required post-transplant is so stringent and difficult to manage. We told our heart surgeon from day 1 that we don't want a transplant, and he agreed with us. We have been super blessed over the past few months that Owen's heart function has remained so good. Of course, with the Glenn coming on Tuesday, the future still looms uncertain. Do heart parents EVER get to stop worrying?
This is our biggest fear. Our Owen will not be eligible for a transplant because of his chromosome abnormality. Transplants are rarely made available for individuals with chromosome abnormalities or mental disabilities. This is because the drug and care regimen required post-transplant is so stringent and difficult to manage. We told our heart surgeon from day 1 that we don't want a transplant, and he agreed with us. We have been super blessed over the past few months that Owen's heart function has remained so good. Of course, with the Glenn coming on Tuesday, the future still looms uncertain. Do heart parents EVER get to stop worrying?
Sunday, September 28, 2008
Leaps and Bounds
Our sweet little boy continues to amaze us. I posted some pictures from a few weeks ago, where he is sitting in a Bumbo seat. He used to slump over to the right all the time because he wasn't strong enough to hold himself up. But now he does! He'll actually sit up in his seat and play with a toy. After a few minutes he starts to get tired and lean to one side, but he's made so much progress.
He also appears to be tolerating tummy time much better. The other day I helped him roll over, then laid on my tummy next to him. He just looked over at me and smiled before he got to work. His favorite thing to do on his tummy is draw his knees up underneath him, and then try to pick up his head. Gravity is not on his side in that position, but recently he was able to pick up his head that way. If we pull his legs out and get his hips flat on the ground, he can lift his head and keep it up for quite a while now. It's a little disheartening that he'll have surgery in a few weeks and not be able to be on his tummy for a while after that, so we'll probably lose some of this progress. But it's such an encouraging sign that he's made it this far. He'll get back here again.
His absolute favorite thing lately is to "be big." What do I mean by this? He loves to be upright! I pick him up to cradle him in my arms, and immediately he's doing a crunch, trying to sit up. He now likes to be held up at our shoulders, but he still prefers for us to sit him up in our arms so he can see us and the world. We've started propping up his Boppy pillow so he can sit almost upright in it. You should see the smiles we get when we put him there and tell him he's a big boy! He's obviously proud of himself and happy to be part of the upright world.
His weight gain has also taken a sudden leap. When I weighed him earlier this week he was closing in on 13 pounds already! He's developed little fat rolls on his thighs. He is now firmly in the 3-6 month clothing range, just in time for him to turn 6 months next week. On Thursday I was home with him for the day, and I took the opportunity to organize his clothes. It was so fun to get out all of the new outfits he'll soon fit into, but it was sad to pack away the ones he's grown out of. He'll never be my tiny newborn again. And that makes me doubly sad because I feel like I missed it when it was happening. I know I'm still grieving that loss, and maybe I always will. I hope his continued good health will help me heal.
His health does continue to seem good. He had some increased stuffiness for a while, but that seems to have dissipated. His 6 month checkup is this week, so we'll see what the pediatrician has to say. This is the doctor's office that consistently measures him big. It'll be interesting to see what they come up with this time.
Owen still isn't eating well from the bottle. He pretty consistently will take at least some, but only if he's truly hungry. If only we all could eat only when we're hungry! Maybe he has the right idea! We're starting in with rice cereal again, and Mark actually had a little bit of success today. We'll probably just have to offer it consistently so Owen will know it's a part of the routine. He doesn't seem to be averse to the food, but he does seem to be scared of the spoon. We plan to let him play with it and hopefully he'll get used to the way it feels in his mouth. We don't know how long he'll need the G-tube, but I plan to really start pushing the feeding issue after he's recovered from his next surgery. I imagine he'll have it at least through the winter, so that we can continue feeding him even if he gets sick or starts teething and won't eat. It's so important for him to get those calories.
And sadly, October 21st is rapidly approaching. I'm excited for him to get through this next stage, because it's one more step down and he should be stronger afterward. However, we are also terrified. It was difficult to hand him over for the first surgery, but we didn't know what it was like not to have him in the hospital yet, and we were still exhausted from him being born five days before. It was actually harder to hand him over for the recent catheterization, even though that was a far less serious procedure. He is now such a part of our everyday lives. Not having him here at the house is going to seem so wrong, whereas the first time around we didn't know yet what it was like to have a baby at home. We knew it wasn't normal that he was still in the hospital, but it was OUR normal.
Please pray for peace for us in the coming weeks as we prepare for Owen's next surgery. I can't speak for Mark, but I can feel myself becoming more tense as the time approaches. I have two doctor appointments this week; one of them is my first trimester screening appointment. Hopefully I will be able to post again soon with good news!
He also appears to be tolerating tummy time much better. The other day I helped him roll over, then laid on my tummy next to him. He just looked over at me and smiled before he got to work. His favorite thing to do on his tummy is draw his knees up underneath him, and then try to pick up his head. Gravity is not on his side in that position, but recently he was able to pick up his head that way. If we pull his legs out and get his hips flat on the ground, he can lift his head and keep it up for quite a while now. It's a little disheartening that he'll have surgery in a few weeks and not be able to be on his tummy for a while after that, so we'll probably lose some of this progress. But it's such an encouraging sign that he's made it this far. He'll get back here again.
His absolute favorite thing lately is to "be big." What do I mean by this? He loves to be upright! I pick him up to cradle him in my arms, and immediately he's doing a crunch, trying to sit up. He now likes to be held up at our shoulders, but he still prefers for us to sit him up in our arms so he can see us and the world. We've started propping up his Boppy pillow so he can sit almost upright in it. You should see the smiles we get when we put him there and tell him he's a big boy! He's obviously proud of himself and happy to be part of the upright world.
His weight gain has also taken a sudden leap. When I weighed him earlier this week he was closing in on 13 pounds already! He's developed little fat rolls on his thighs. He is now firmly in the 3-6 month clothing range, just in time for him to turn 6 months next week. On Thursday I was home with him for the day, and I took the opportunity to organize his clothes. It was so fun to get out all of the new outfits he'll soon fit into, but it was sad to pack away the ones he's grown out of. He'll never be my tiny newborn again. And that makes me doubly sad because I feel like I missed it when it was happening. I know I'm still grieving that loss, and maybe I always will. I hope his continued good health will help me heal.
His health does continue to seem good. He had some increased stuffiness for a while, but that seems to have dissipated. His 6 month checkup is this week, so we'll see what the pediatrician has to say. This is the doctor's office that consistently measures him big. It'll be interesting to see what they come up with this time.
Owen still isn't eating well from the bottle. He pretty consistently will take at least some, but only if he's truly hungry. If only we all could eat only when we're hungry! Maybe he has the right idea! We're starting in with rice cereal again, and Mark actually had a little bit of success today. We'll probably just have to offer it consistently so Owen will know it's a part of the routine. He doesn't seem to be averse to the food, but he does seem to be scared of the spoon. We plan to let him play with it and hopefully he'll get used to the way it feels in his mouth. We don't know how long he'll need the G-tube, but I plan to really start pushing the feeding issue after he's recovered from his next surgery. I imagine he'll have it at least through the winter, so that we can continue feeding him even if he gets sick or starts teething and won't eat. It's so important for him to get those calories.
And sadly, October 21st is rapidly approaching. I'm excited for him to get through this next stage, because it's one more step down and he should be stronger afterward. However, we are also terrified. It was difficult to hand him over for the first surgery, but we didn't know what it was like not to have him in the hospital yet, and we were still exhausted from him being born five days before. It was actually harder to hand him over for the recent catheterization, even though that was a far less serious procedure. He is now such a part of our everyday lives. Not having him here at the house is going to seem so wrong, whereas the first time around we didn't know yet what it was like to have a baby at home. We knew it wasn't normal that he was still in the hospital, but it was OUR normal.
Please pray for peace for us in the coming weeks as we prepare for Owen's next surgery. I can't speak for Mark, but I can feel myself becoming more tense as the time approaches. I have two doctor appointments this week; one of them is my first trimester screening appointment. Hopefully I will be able to post again soon with good news!
Saturday, August 2, 2008
We have a date
*Gulp* The Glenn is coming.
Owen is scheduled to have the Glenn October 21st. As long as he remains stable in the meantime, that is. It never was going to be easy to hand him back over for another heart surgery. However, it's nice that we can prepare ourselves mentally well beforehand.
Everything else is pretty boring right now. We've gotten to spend some fun time with family over the past couple of days. We were given a closing date of August 28th for the new house, but since Owen's cath is the day before, we'll probably try to push it back a couple of days. That's about it. We hope you all are having a great weekend!
Owen is scheduled to have the Glenn October 21st. As long as he remains stable in the meantime, that is. It never was going to be easy to hand him back over for another heart surgery. However, it's nice that we can prepare ourselves mentally well beforehand.
Everything else is pretty boring right now. We've gotten to spend some fun time with family over the past couple of days. We were given a closing date of August 28th for the new house, but since Owen's cath is the day before, we'll probably try to push it back a couple of days. That's about it. We hope you all are having a great weekend!
Thursday, July 31, 2008
Welcome!
Hello, and welcome to our new site for updates on Baby Owen! I decided to switch to Blogspot so our family and friends would have slightly easier access (eg no sign in required.) Not sure if I can archive the updates from our CarePage on here, but I may try at some point. And now for today's update!
The big news I mentioned last time has not been finalized yet, so we're all still waiting on that. Sorry. But we do have other big news. Owen had a cardiology appointment today, and his catheterization is scheduled for August 27th. The cath will be done to check out his heart prior to his next surgery, the Glenn. Dr. Parikh, one of our four cardiologists, said Owen's heart sounds very stable and good today, and we have no reason to believe we will end up needing the Glenn before October. In fact, if Owen's heart function remains this good, we may wait through the winter before having the Glenn. What we want to avoid is having the Glenn during the winter, since that is the high season for infection. This surgery is usually done between 6 and 9 months of age (6 is October, 9 is January) but can be postponed longer if heart function is good enough. I want to do what's best for Owen, but I definitely prefer October. I'd hate to get in a situation where we have to have the Glenn emergently in the winter.
Aside from scheduling the cath, Dr. Parikh was happy with how Owen is doing. We also saw Dr. Escobar (developmental pediatrician) today, and he is downright thrilled with Owen's progress. According to their info, Owen's height and weight, while extremely low, are tracking along the curve. This means his growth rate is normal, even if he's very small for his age. His weight is 3rd percentile, and his height is not even on the curve. Dr. Escobar also looked at Owen's current motor skills, and was pleased with those as well.
Speaking of motor skills, Owen has been showing off lately. Yesterday he started reaching out and grabbing the toys on his gym. He also reaches out and grabs toys while lying on his side. He has one toy that is a cube, and when you push each side it plays a song. He is able to push the sides and turn it on, although I don't think he realizes he's the one doing it! He just sees it light up and wants to get at it. It's handy that he can turn it on by himself, though!
Dr. Escobar also suggested we start Owen on solid foods. So today we experimented with rice cereal, with mixed results. He doesn't seem to care for it too much (I think I mixed it too thick) but he doesn't push it out of his mouth, either. He sort of moves it around until he accidentally swallows it, or I give him the bottle to wash it down. I think if I mix it a little thinner, he'll have an easier time swallowing it. I forgot to say it, but you've probably already guessed he's eating again. I don't know what his issue was over the weekend when he was refusing the bottle. I took him to the regular pediatrician on Monday (he needed vaccinations anyway) and she could find nothing wrong with him. That day he just up and started eating again. He's not back up to eating quite as much from the bottle as he was before, but we're at about 50/50. I'll definitely take it!
We have PT, a visit with Mark's family, and the Feast of St. Alphonsus (our church's patron saint) tomorrow. So it will be a busy day! On Saturday I graduate from Purdue's Doctor of Pharmacy program. This has been a long time coming (I've been in college 10 years!) and it feels like such a huge accomplishment. Especially given what we have gone through in the past year. God has been so good to us through it all. One more example of just how good: we found daycare for Owen. Not only did we find what seems like a great, loving in-home situation, but he will be cared for by a woman who was formerly a NICU nurse for 27 years. We found this person through a post I put out on a website. We got ONE response, and it was her. How amazing is that? We just keep getting taken care of so completely. See what prayer can do??!
The big news I mentioned last time has not been finalized yet, so we're all still waiting on that. Sorry. But we do have other big news. Owen had a cardiology appointment today, and his catheterization is scheduled for August 27th. The cath will be done to check out his heart prior to his next surgery, the Glenn. Dr. Parikh, one of our four cardiologists, said Owen's heart sounds very stable and good today, and we have no reason to believe we will end up needing the Glenn before October. In fact, if Owen's heart function remains this good, we may wait through the winter before having the Glenn. What we want to avoid is having the Glenn during the winter, since that is the high season for infection. This surgery is usually done between 6 and 9 months of age (6 is October, 9 is January) but can be postponed longer if heart function is good enough. I want to do what's best for Owen, but I definitely prefer October. I'd hate to get in a situation where we have to have the Glenn emergently in the winter.
Aside from scheduling the cath, Dr. Parikh was happy with how Owen is doing. We also saw Dr. Escobar (developmental pediatrician) today, and he is downright thrilled with Owen's progress. According to their info, Owen's height and weight, while extremely low, are tracking along the curve. This means his growth rate is normal, even if he's very small for his age. His weight is 3rd percentile, and his height is not even on the curve. Dr. Escobar also looked at Owen's current motor skills, and was pleased with those as well.
Speaking of motor skills, Owen has been showing off lately. Yesterday he started reaching out and grabbing the toys on his gym. He also reaches out and grabs toys while lying on his side. He has one toy that is a cube, and when you push each side it plays a song. He is able to push the sides and turn it on, although I don't think he realizes he's the one doing it! He just sees it light up and wants to get at it. It's handy that he can turn it on by himself, though!
Dr. Escobar also suggested we start Owen on solid foods. So today we experimented with rice cereal, with mixed results. He doesn't seem to care for it too much (I think I mixed it too thick) but he doesn't push it out of his mouth, either. He sort of moves it around until he accidentally swallows it, or I give him the bottle to wash it down. I think if I mix it a little thinner, he'll have an easier time swallowing it. I forgot to say it, but you've probably already guessed he's eating again. I don't know what his issue was over the weekend when he was refusing the bottle. I took him to the regular pediatrician on Monday (he needed vaccinations anyway) and she could find nothing wrong with him. That day he just up and started eating again. He's not back up to eating quite as much from the bottle as he was before, but we're at about 50/50. I'll definitely take it!
We have PT, a visit with Mark's family, and the Feast of St. Alphonsus (our church's patron saint) tomorrow. So it will be a busy day! On Saturday I graduate from Purdue's Doctor of Pharmacy program. This has been a long time coming (I've been in college 10 years!) and it feels like such a huge accomplishment. Especially given what we have gone through in the past year. God has been so good to us through it all. One more example of just how good: we found daycare for Owen. Not only did we find what seems like a great, loving in-home situation, but he will be cared for by a woman who was formerly a NICU nurse for 27 years. We found this person through a post I put out on a website. We got ONE response, and it was her. How amazing is that? We just keep getting taken care of so completely. See what prayer can do??!
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