Today was a great day for little Aurelia. Her procedure yesterday, while exhausting for her, went well. They had a bit of trouble getting the NJ tube in, which wasn't much of a surprise considering the repairs that she had already had done in her intestines. The part that was difficult was the timing of the surgery. It was scheduled for 2:30, so she had to be taken off of food at noon. She had her last feed from 11-12 and then we waited until the IR folks were ready for her. 2:30 came and went. Our nurse, Jackie (who was so fantastic all day long - a real champ and fighter for her tiny charges and their parents) reported to me around 3:15 that IR had called and that Aurelia was next in line, after they completed the procedure that they were currently doing. It should be another half an hour or so. Aurelia was pretty content and didn't seem to be getting hungry, which was a surprise since her next feed should have been around 2 pm. At 4 pm, IR called again and said that it would be another 1/2 hour and that Jackie could go ahead and feed Aurelia. They didn't want her to have food in her belly because it would make the procedure "less messy," but since so much time had passed they didn't want to have a hungry/grouchy baby on their hands and thought that they could chance the mess. Jackie got Aurelia's milk warmed up and started the feed. She only had about 10 ml when IR called again and said that they were ready for her! Finally!
I had been told that I would be allowed to accompany her down to IR for the procedure, so we got Aurelia into a little baby cart and brought along her monitor, oxygen tank (they had to put her on oxygen for the transport to the IR lab), 2 nurses, a fellow, and me ~ and we all headed down to the lab. The trip wasn't long, just down a few halls, an elevator ride from Floor 6 to Floor 3 and a few more halls. When we got to IR, I was told that I couldn't stay. I kind of figured that would happen, but it was really tough to be sent away. The fellow, Dr. Janson told me that they'd take good care of her and that she'd be back in her room soon enough. I felt sad to leave her, but comforted that Dr. Janson and Jackie would be with her the whole time.
The wait was pretty torturous, but she came back sound asleep with her new NJ tube. Jackie said that it was tough and that they had a bit of trouble getting it in, but that our girl was a real trooper. She got a bit of a bloody nose (which sort of made me feel better, since I had given her one the day before when I placed the NG tube!), but that they got the tube in and that it was secured in place. Aurelia's heart rate (normally in the 120's to 140's) was extremely high (over 200) and they just wanted her to rest and calm down for a while, which she did after a half hour or so. By the time I left, she was down to the 150's and sleeping peacefully.
Today was a really nice day. I brought Madison and my mom to the hospital this morning and visited with Aurelia for a good long time. I got to be there for Rounds, which hasn't happened in several days. They were pleased with how she's doing, but they still plan on sending her for a cardiac catheter later on this week (Friday). It seems to me that Aurelia's breathing is much less labored and she didn't seem to be experiencing any reflux at all, which was great!
When I went back to the hospital this afternoon, she was wide awake for quite a while, so we spent a good long time just looking at each other and snuggling. I know that Charley has mentioned how much Aurelia hates having a wet or dirty diaper, so I was pleasantly surprised when I changed her this afternoon and she didn't get the least bit upset. She has been propped up/elevated in her bed for the last week or so to help with her reflux, but today she wasn't as propped ~ and she didn't seem to mind! I feel really good about the NJ tube helping both her breathing and her reflux and I pray that the pattern continues!
As good of a day as it was for me, I am constantly reminded about the fragility of our situation. I spoke with another couple tonight at dinner who are the parents to a 2-week old heart baby who had surgery yesterday. They said that it was a rough morning. They got a phone call around 5 am and they had to rush to the hospital because the baby was likely being sent back into the OR to have her chest re-opened. Luckily, that didn't happen and they were having a much better night. It is good to share in the experiences of others in this house. We were in a Family Meeting (once a month, mandatory meetings at the Ronald McDonald House, just to reiterate house rules and that sort of thing) tonight when their phone rang and the couple sprinted out of the meeting. I'm sure that it was the hospital calling and I really hope that their little girl is okay.
For now, our little girl is doing really well. As I said before, I hope that she continues getting better. This is a marathon, not a sprint. Some days it feels like we are hurdling toward the finish line and our good friends helen & Jason remind us that this is a marathon and not a sprint. It is a good mantra to keep in mind as we go through each day of this journey!
Wednesday, October 20, 2010
Tuesday, October 19, 2010
An NG or a NJ or an ABC to your XYZ
Aurelia goes in for a procedure in just a little bit. the folks down in IR (Interventionary Radiology) will be putting a feeding tube into Aurelia that runs not just into her stomach but beyond it and her duodenum and leaving it smack dab in her intestines.
Currently, Aurelia's tube ends in her stomach and she receives bolus feeds, or feeds every three hours. With this new NJ tube she will be fed 24 hours a day at a very small rate. The hope is that the NJ will lessen her acid reflux and thereby improve her ability to breathe.
It sounds silly, but I worry more about this than I do for her potentially coming heart catheter (done at the end of the week most likely. Maybe it is the immediacy of the procedure or maybe it's my own paranoia that something so small and 'routine' could end up disastrous. Either way your thoughts, prayers, and well wishes are welcome!
Currently, Aurelia's tube ends in her stomach and she receives bolus feeds, or feeds every three hours. With this new NJ tube she will be fed 24 hours a day at a very small rate. The hope is that the NJ will lessen her acid reflux and thereby improve her ability to breathe.
It sounds silly, but I worry more about this than I do for her potentially coming heart catheter (done at the end of the week most likely. Maybe it is the immediacy of the procedure or maybe it's my own paranoia that something so small and 'routine' could end up disastrous. Either way your thoughts, prayers, and well wishes are welcome!
Monday, October 18, 2010
A Half-Life
There is a strange sort of half life in the hospital. You can see it in the eyes of parents and more so in the eyes of older patients. It's hard to describe. I suppose it looks like exhaustion to most people, but there is something more insidious about how the hospital treats you.
There is a constant desperation underneath the dead eyes and sallow cheeks. With our tousled hair we aren't zombies, but we are definitely living in two worlds. We are filled with hope, it's true, but we also dread the next crisis, beeping monitor, or upset cry. Even sadder to us as time passes is our desensitization to the monitors and beeps and warnings going off around us during the day. This only happens at your most tired and vulnerable moments when you really can't think about much of anything other than the six inches in front of your face.
Usually during this time someone will come to your room and rouse you from this hospital induced stupor and tell you about the result of some test or some other test to come or some medication adjustment or the current status of the doctors on rounds. Very rarely your child will deliver good news herself, through a smile or a happy chortle, or even a boisterous bowel movement (again with the poop!). Rebounding from these truly transcendental, but empty, moments is odd. You see parents and patients alike look around with dreamy expressions, and some reach for a cold hospital drink from one of those universally bland and unappealing opaque ribbed plastic cups with an aluminum foil 'cap.'
Some say a word or two to their partner, others take a step or two from their room or pod, and many turn to their nurse for comfort and support in the form of good news or a silent smile. You recognize all these emotions and feelings in the faces around you and you almost push yourself to ignore them rather than pity them, because if you let pity exert itself for them then you begin to let it feed on your sadness as well.
Sadness here isn't really about tears, so pity doesn't usually take the form of someone hugging you or holding you tight (though that is often what we really need) when they visit the NICU, or CICU, or CCU. Instead people see these babies wired to machines and struggling to breathe or they watch us practice putting tubes down the noses of our babies and they say vague self-insulating platitudes like, 'It will be OK' or 'Don't worry, she's in good hands.'
You register these things in the back of your mind and you smile at the appropriate times and nod at the niceties but you really just feel the strange hospital sadness all the more. Your mind whispers things like, 'She is NOT ok' and 'I KNOW she is in good hands, but what the hell does that have to do with anything?!?' and you dismiss these thoughts quickly because you know that reality is not what most visitors want to see or talk about.
And that's ok, because pity here in these wards is about the depression we feel as parents of a CICU or NICU baby; our days drag out in marathons of emotional and spiritual endurance and we silently pity each other and you almost feel yourself giving whatever will you have left out over to the parents and people around you. Pity here is hoping for others, that if you can will them well, or watch them survive then you know you can survive your own sadness and your own race against whatever is hurting your loved one.
In some ways the pity we feel for ourselves and each other leads to hope that together everyone makes it through. As families pack up and leave the hospital or the Ronald McDonald House you know that some made it and they are leaving with their child and new time together as a family. You know too that some have left their children behind, or that they will meet them again in their hometown or home state for one final goodbye, but you can see them walk out with their heads high and their arms around one another knowing that they gave all they could and used all the willpower we and others gave them, and that in this case their best was simply not enough. And as horrifying a fact that is, it is still enough for families to make it together.
All of that said the life we lead here isn't natural. I don't know what to make of how I spend my time here at CHOP. I'm not a teacher here and I could give a dog's fart about anything outside these walls, but I have to still make sub plans and come up with lessons that I don't teach and don't assess and really don't even think about until 2:35 each day when I wonder how many, if any, students misbehaved.
I have two daughters here, one I see only part of the time and the other exists in a strange world of tubes and wires and pumps and blenders that is undoubtedly foreign to me. Both of my girls are in some ways removed from me as a father. It's hard and a struggle to find a pattern here as a dad, for either girl, and just when I feel like I'm hitting a stride and improving everyone's quality of life I leave and let all that progress slip into the filtered air ducts of CHOP and the CCU.
Or at least, that's what it feels like when the hospital half-life has you in its grips. During moments when you look into your newborn's eyes, or splash in the water with your 19 month old at the Please Touch museum, you know that you always make a difference and that love lingers longer than the pain of separation.
See that's the thing about hospital half-life. And maybe it's what makes it so punishing on everyone here - you don't control your future or the future of your loved ones as much as you can on the outside. Your life goes and stops on the words and machines of other people. It's almost like the tortured half-life you see in people who live in airports, shuffling from city to city, dependent on professionals who move people through the air safely and (hopefully) quickly.
Folks here yearn for an end to living on someone else's schedule and by someone else's words and medications and tests. We trudge through all of this day in and day out to get back home to our friends and loved ones so that we can hold hands outside the hospital and hug each other knowing that what we've made is a family stronger for the struggle and one that still believes in hope and miracles and the power of real human love. It's not a bad thing, this hospital half-life, it's just a quasi state of existence that's hard to understand unless you've lived it yourself. And I think that's a good thing.
There is a constant desperation underneath the dead eyes and sallow cheeks. With our tousled hair we aren't zombies, but we are definitely living in two worlds. We are filled with hope, it's true, but we also dread the next crisis, beeping monitor, or upset cry. Even sadder to us as time passes is our desensitization to the monitors and beeps and warnings going off around us during the day. This only happens at your most tired and vulnerable moments when you really can't think about much of anything other than the six inches in front of your face.
Usually during this time someone will come to your room and rouse you from this hospital induced stupor and tell you about the result of some test or some other test to come or some medication adjustment or the current status of the doctors on rounds. Very rarely your child will deliver good news herself, through a smile or a happy chortle, or even a boisterous bowel movement (again with the poop!). Rebounding from these truly transcendental, but empty, moments is odd. You see parents and patients alike look around with dreamy expressions, and some reach for a cold hospital drink from one of those universally bland and unappealing opaque ribbed plastic cups with an aluminum foil 'cap.'
Some say a word or two to their partner, others take a step or two from their room or pod, and many turn to their nurse for comfort and support in the form of good news or a silent smile. You recognize all these emotions and feelings in the faces around you and you almost push yourself to ignore them rather than pity them, because if you let pity exert itself for them then you begin to let it feed on your sadness as well.
Sadness here isn't really about tears, so pity doesn't usually take the form of someone hugging you or holding you tight (though that is often what we really need) when they visit the NICU, or CICU, or CCU. Instead people see these babies wired to machines and struggling to breathe or they watch us practice putting tubes down the noses of our babies and they say vague self-insulating platitudes like, 'It will be OK' or 'Don't worry, she's in good hands.'
You register these things in the back of your mind and you smile at the appropriate times and nod at the niceties but you really just feel the strange hospital sadness all the more. Your mind whispers things like, 'She is NOT ok' and 'I KNOW she is in good hands, but what the hell does that have to do with anything?!?' and you dismiss these thoughts quickly because you know that reality is not what most visitors want to see or talk about.
And that's ok, because pity here in these wards is about the depression we feel as parents of a CICU or NICU baby; our days drag out in marathons of emotional and spiritual endurance and we silently pity each other and you almost feel yourself giving whatever will you have left out over to the parents and people around you. Pity here is hoping for others, that if you can will them well, or watch them survive then you know you can survive your own sadness and your own race against whatever is hurting your loved one.
In some ways the pity we feel for ourselves and each other leads to hope that together everyone makes it through. As families pack up and leave the hospital or the Ronald McDonald House you know that some made it and they are leaving with their child and new time together as a family. You know too that some have left their children behind, or that they will meet them again in their hometown or home state for one final goodbye, but you can see them walk out with their heads high and their arms around one another knowing that they gave all they could and used all the willpower we and others gave them, and that in this case their best was simply not enough. And as horrifying a fact that is, it is still enough for families to make it together.
All of that said the life we lead here isn't natural. I don't know what to make of how I spend my time here at CHOP. I'm not a teacher here and I could give a dog's fart about anything outside these walls, but I have to still make sub plans and come up with lessons that I don't teach and don't assess and really don't even think about until 2:35 each day when I wonder how many, if any, students misbehaved.
I have two daughters here, one I see only part of the time and the other exists in a strange world of tubes and wires and pumps and blenders that is undoubtedly foreign to me. Both of my girls are in some ways removed from me as a father. It's hard and a struggle to find a pattern here as a dad, for either girl, and just when I feel like I'm hitting a stride and improving everyone's quality of life I leave and let all that progress slip into the filtered air ducts of CHOP and the CCU.
Or at least, that's what it feels like when the hospital half-life has you in its grips. During moments when you look into your newborn's eyes, or splash in the water with your 19 month old at the Please Touch museum, you know that you always make a difference and that love lingers longer than the pain of separation.
See that's the thing about hospital half-life. And maybe it's what makes it so punishing on everyone here - you don't control your future or the future of your loved ones as much as you can on the outside. Your life goes and stops on the words and machines of other people. It's almost like the tortured half-life you see in people who live in airports, shuffling from city to city, dependent on professionals who move people through the air safely and (hopefully) quickly.
Folks here yearn for an end to living on someone else's schedule and by someone else's words and medications and tests. We trudge through all of this day in and day out to get back home to our friends and loved ones so that we can hold hands outside the hospital and hug each other knowing that what we've made is a family stronger for the struggle and one that still believes in hope and miracles and the power of real human love. It's not a bad thing, this hospital half-life, it's just a quasi state of existence that's hard to understand unless you've lived it yourself. And I think that's a good thing.
Sunday, October 17, 2010
A whirlwind of thoughts, feelings, and happenings
We know it has been some time since our last post, but things in the Cardiac Care Unit have kept us on our toes. In this post we hope to give you an update on all of Aurelia's conditions, the plans we have to help her, and some of the other goings on involving our little family as we continue our pilgrimage here at CHOP.
This week has been a tale of competing ideas. Our primary attending prior to yesterday's shift change, Dr. O'Connor, kept a very close eye on Aurelia's breathing, hoping to take her off of room air flow (2 liters) by the end of this weekend. There has been a good deal of concern with Aurelia's breathing. Typically, cardiac kids her age are operating their respiratory system unassisted, but Aurelia is a bit different and so we are trying to figure out why she needs flow assistance when it comes to breathing.
Similarly, Aurelia's progress with bottle feeding is also a concern. While cardiac infants often struggle to get started on the bottle, there is a good chance of success to not only resume bottle feeding, but eventually transition back to breast feeds. Aurelia had been taking about 5 ml on the bottle during her feeds, but she wasn't making much progress otherwise and was having some trouble with acid reflux. As a precaution Dr. O'Connor called in the specialists from Ear/Nose/Throat to examine her esophagus. It turns out that Aurelia's streak as a great gambler continues. She once again came up triple 7's when betting on her vocal cords being paralyzed during heart surgery. E/N/T found that her left vocal cord came out paralyzed and this most definitely would impact any attempts to bottle feed (as would her cleft palette). This can also make breathing a bit more difficult as well.
Even with these small changes the team decided not to proceed with the heart catheter that had been scheduled for either Friday or Monday. Dr. O'Connor felt that the data on heart pressure wouldn't really give us any more information that would be useful regarding her breathing, particularly since her echo-cardiograms came back so excellent both last Wednesday and Friday.
The plan would be to use this weekend to wean Aurelia off the room air flow and begin to talk about discharge sometime early next week, getting us home by the middle of the week. Jillian started talking to our case manager to arrange for home care and equipment use for Aurelia's journey home. She arranged at least two to three home nurse visits and set up our rental of a feeding pump. She also will make sure we have a family meetings sometime early next week to talk with all of the members of Aurelia's team to be sure that we have plans in place for all of Aurelia's problems.
A family meeting to coordinate care is a real concern for us as we move closer and closer to coming home. The details are getting so numerous that it is hard to track them and the big picture at the same time. For instance, Aurelia's feeds here are supplemented with 22 calories of enfamil formula, which is something that we have to demonstrate proficiency in before leaving. We also had to take an NG tube class and a CPR class yesterday and get briefed on how to use the pump. Details like these are important but begin to block out how it all fits into the big picture, particularly when you add in the seven medicines she gets, the different timetables, and cleaning procedures for all the equipment.
All of this became a bit more complicated when Aurelia exhibited respiratory distress Friday night into Saturday. The result was bumping her back to 2 liters of air flow (she had worked herself down to 1 liter!) and avoid weaning her off before discharge The plan to discharge now included her going home with oxygen and us leaving on Monday (according to our nurse). Leaving Monday?!?!?! When we heard this yesterday, we were stunned.
Needless to say, our nurse giving us this information greatly distressed everyone. We had no training on using oxygen tanks at home, or as portable devices, we didn't even know if our case manager had or could make arrangements for all the needed equipment before discharge on Monday! And what about our family meeting? And was there a class we needed to take? And we hadn't even inserted her feeding tube on our own, OR done 24 hour care! And what about the urology test that was to come up in a week or two? And what was the plan with plastics? Or with Occupational Therapy and Speech Therapy?
Complicating issues was a shift change in attending doctors. Dr. O'Connor went off as our primary and Dr. Vetter came on; we did not know what to think about this change because it seemed that once again when the weekend came with its new doctors and nurses the pace to have us discharged quickened. We felt genuinely overwhelmed and under-prepared and upset that Aurelia would be leaving here on Monday. We felt a bit frantic, I think, yesterday afternoon when Aurelia's acid reflux took a hard toll on her. She had several spit up incidents, needed a lot of suction, and cried her small vocal cord paralyzed cry for most of the afternoon. So sad, that cry.
Thankfully, when Dr. Vetter came to us she put all our fears at ease. She introduced herself and prompted me to ask all the questions I had about Aurelia's care. I started by saying how concerned I was that we didn't know why she was breathing so hard and needing room air flow to stay oxygenated, and how that might impact the plan for us to discharge on Monday.
Dr. Vetter's reaction was fabulous. She held up her hand politely, indicating for me to stop, and said, "Well let me put that rumor to rest, because I don't know where you heard such a thing. There is no way this little girl is going home on oxygen when I don't know why she's breathing so hard. I've called pulmonary for a consult and they'll be stopping by and taking some x-rays tomorrow. She's not going home anytime soon."
I about cheered and kissed the woman. She told us that Aurelia was an excellent candidate for a program that kept her as an outpatient here so that moving forward we could coordinate all her care under one umbrella and be sure that we need not have many multiple visits that complicated communication between doctors and the quality of Aurelia's care. She said that she really felt the need for a family meeting and would be pushing the case manager to set one up when she came in on Monday. Additionally, we stopped bottle feeds for the foreseeable future until we know why Aurelia's having such trouble breathing, and what the progress is with her vocal cord recovering from its paralysis.
So, in brief, that's where we are - a few other things in list form to keep you all in the loop.
This week has been a tale of competing ideas. Our primary attending prior to yesterday's shift change, Dr. O'Connor, kept a very close eye on Aurelia's breathing, hoping to take her off of room air flow (2 liters) by the end of this weekend. There has been a good deal of concern with Aurelia's breathing. Typically, cardiac kids her age are operating their respiratory system unassisted, but Aurelia is a bit different and so we are trying to figure out why she needs flow assistance when it comes to breathing.
Similarly, Aurelia's progress with bottle feeding is also a concern. While cardiac infants often struggle to get started on the bottle, there is a good chance of success to not only resume bottle feeding, but eventually transition back to breast feeds. Aurelia had been taking about 5 ml on the bottle during her feeds, but she wasn't making much progress otherwise and was having some trouble with acid reflux. As a precaution Dr. O'Connor called in the specialists from Ear/Nose/Throat to examine her esophagus. It turns out that Aurelia's streak as a great gambler continues. She once again came up triple 7's when betting on her vocal cords being paralyzed during heart surgery. E/N/T found that her left vocal cord came out paralyzed and this most definitely would impact any attempts to bottle feed (as would her cleft palette). This can also make breathing a bit more difficult as well.
Even with these small changes the team decided not to proceed with the heart catheter that had been scheduled for either Friday or Monday. Dr. O'Connor felt that the data on heart pressure wouldn't really give us any more information that would be useful regarding her breathing, particularly since her echo-cardiograms came back so excellent both last Wednesday and Friday.
The plan would be to use this weekend to wean Aurelia off the room air flow and begin to talk about discharge sometime early next week, getting us home by the middle of the week. Jillian started talking to our case manager to arrange for home care and equipment use for Aurelia's journey home. She arranged at least two to three home nurse visits and set up our rental of a feeding pump. She also will make sure we have a family meetings sometime early next week to talk with all of the members of Aurelia's team to be sure that we have plans in place for all of Aurelia's problems.
A family meeting to coordinate care is a real concern for us as we move closer and closer to coming home. The details are getting so numerous that it is hard to track them and the big picture at the same time. For instance, Aurelia's feeds here are supplemented with 22 calories of enfamil formula, which is something that we have to demonstrate proficiency in before leaving. We also had to take an NG tube class and a CPR class yesterday and get briefed on how to use the pump. Details like these are important but begin to block out how it all fits into the big picture, particularly when you add in the seven medicines she gets, the different timetables, and cleaning procedures for all the equipment.
All of this became a bit more complicated when Aurelia exhibited respiratory distress Friday night into Saturday. The result was bumping her back to 2 liters of air flow (she had worked herself down to 1 liter!) and avoid weaning her off before discharge The plan to discharge now included her going home with oxygen and us leaving on Monday (according to our nurse). Leaving Monday?!?!?! When we heard this yesterday, we were stunned.
Needless to say, our nurse giving us this information greatly distressed everyone. We had no training on using oxygen tanks at home, or as portable devices, we didn't even know if our case manager had or could make arrangements for all the needed equipment before discharge on Monday! And what about our family meeting? And was there a class we needed to take? And we hadn't even inserted her feeding tube on our own, OR done 24 hour care! And what about the urology test that was to come up in a week or two? And what was the plan with plastics? Or with Occupational Therapy and Speech Therapy?
Complicating issues was a shift change in attending doctors. Dr. O'Connor went off as our primary and Dr. Vetter came on; we did not know what to think about this change because it seemed that once again when the weekend came with its new doctors and nurses the pace to have us discharged quickened. We felt genuinely overwhelmed and under-prepared and upset that Aurelia would be leaving here on Monday. We felt a bit frantic, I think, yesterday afternoon when Aurelia's acid reflux took a hard toll on her. She had several spit up incidents, needed a lot of suction, and cried her small vocal cord paralyzed cry for most of the afternoon. So sad, that cry.
Thankfully, when Dr. Vetter came to us she put all our fears at ease. She introduced herself and prompted me to ask all the questions I had about Aurelia's care. I started by saying how concerned I was that we didn't know why she was breathing so hard and needing room air flow to stay oxygenated, and how that might impact the plan for us to discharge on Monday.
Dr. Vetter's reaction was fabulous. She held up her hand politely, indicating for me to stop, and said, "Well let me put that rumor to rest, because I don't know where you heard such a thing. There is no way this little girl is going home on oxygen when I don't know why she's breathing so hard. I've called pulmonary for a consult and they'll be stopping by and taking some x-rays tomorrow. She's not going home anytime soon."
I about cheered and kissed the woman. She told us that Aurelia was an excellent candidate for a program that kept her as an outpatient here so that moving forward we could coordinate all her care under one umbrella and be sure that we need not have many multiple visits that complicated communication between doctors and the quality of Aurelia's care. She said that she really felt the need for a family meeting and would be pushing the case manager to set one up when she came in on Monday. Additionally, we stopped bottle feeds for the foreseeable future until we know why Aurelia's having such trouble breathing, and what the progress is with her vocal cord recovering from its paralysis.
So, in brief, that's where we are - a few other things in list form to keep you all in the loop.
- If pulmonary's consult doesn't yield anything, then we'll likely have the heart catheter sometime in the upcoming week. Pulmonary did a cursory examination this morning and will present to the attending there after the x-ray is taken. We have not yet heard the result of Aurelia's consult.Dr. Svwast, our lead cardiologist is now contributing to that discussion.
- Our case manager will be contacting 'complex scheduling' and arranging the family meeting starting tomorrow.
- Aurelia's medications include a calcium supplement, a chloride supplement (now and again), prilosec and zantac, amoxicillin, and lasix. She receives a number of them throughout the day, some multiple times a day, some with feeds, some without. They are hoping to increase her reflux medication as one possible solution to her reflux problem. Another is extending the feeding tube beyond the stomach sphincter.
- We haven't heard anything in a bit from urology or plastics. Expect new updates later this week.
- While we are upset about the lack of bottle feeding, we are glad that we at least have a plan in place to help Aurelia's vocal cord issues as much as we can.
- They are drawing labs on Aurelia daily, looking for low calcium and chloride. She's been tested twice for a rhinovirus (cold) that has been going around the hospital. So far, she's come up clean each time.
- She has the cutest little baby butt ever. EVER!
That's all we have for now, and as this post is wicked long we'll call it a day. More pictures and maybe some video coming soon.
Wednesday, October 13, 2010
Little A ~ some new pictures
Aurelia's new bed in the Cardiac Care Unit is much larger and allows space for ALL of her special friends to be in bed too!
Here she is with the giraffe lovey that Madison picked out for her baby sister. We each spent nights sleeping with this little blanket for quite some time before Aurelia was born. We wanted to have our scent and the scent of "home" on it so that our little one would recognize home and family. She seems to like this one, so I hope that our plan works!
Daddy and his new baby girl.
Check out the hair bow! Her nurses in the CICU dresser her up in the outfit below and added the "pretty" to her hair. It was a nice surprise to see her all dolled up when I went to visit one day last week.
Her first outfit was a onesie from the hospital! She really didn't mind it too much. She's just upset because she just had her diaper changed and as much as she hates having a wet diaper, she REALLY hates being naked!! Very unlike her sister in that respect!
Both my girls! This was taken shortly after the move to the CCU. It was really great to hold both of them together.
Check out the hair bow! Her nurses in the CICU dresser her up in the outfit below and added the "pretty" to her hair. It was a nice surprise to see her all dolled up when I went to visit one day last week.
Her first outfit was a onesie from the hospital! She really didn't mind it too much. She's just upset because she just had her diaper changed and as much as she hates having a wet diaper, she REALLY hates being naked!! Very unlike her sister in that respect!
Both my girls! This was taken shortly after the move to the CCU. It was really great to hold both of them together. Wednesday, October 13th
Today was my due date, hard to imagine since Aurelia is nearly 3 weeks old! The days seem to go very quickly and very slowly at the same time. I continue to juggle my time between both girls and to feel enormous amounts of guilt when I am not with one of them. Since Madison still has a cold, I haven't been able to bring her to the hospital this week. It has been tough because I haven't been spending enough time with her. I want to be at the hospital as much as possible during the day, so that I am there when the various doctors and specialists stop in to see Aurelia. But, I want to give Maddie her "mama time" too. My plan today was to be at the hospital for a good part of the day. The Speech folks were planning to do a bottle feed at noon and I wanted to be present for that, so I told my mom that I'd be back sometime in the afternoon and that we could take Maddie to The Please Touch Museum, if she was rested and seemed to be interested in getting out of the house (which I'm sure my mom was ready for!). The plan changed a bit when I got to the hospital and found out that Speech would be doing the 3 pm feed instead of the noon one as planned. I headed back to the house and picked up mom and Maddie and headed for the museum. We had a great morning. There are all kinds of fun exhibits and Madison really had a fantastic time. I think that Charley and I will take Maddie there again over the weekend. It will be good to have some family time! Here are a few pictures from the visit to the museum.
Monday, October 11, 2010
Monday, October 11th
It has been many days since we have posted a real update and I apologize ahead of time because this won't be a long post, but I wanted to get something up for those of you that are still following Aurelia's story. The biggest news is that Aurelia was moved on Saturday out of the Cardiac Intensive Care Unit to the Cardiac Care Unit. She isn't in need of as much "intensive" care, so she was able to go to the step-down unit. This, as all of our doctors and nurses have reminded us, is a good thing. This means that she is one step closer to going home. Good, but scary. Since we've been in the CCU, which is just across the way from the CICU, we've felt overwhelmed and a little scared about Aurelia's care.
Charley and I both know that Aurelia is in the best place possible and that this move to the CCU is a good thing, but because she was moved on the weekend, we feel like it is taking her new team a long time to get to know her and her case. We miss our nurses and doctors from the CICU! We also felt like our move to the CCU put us in a marathon sprint for the finishing line (getting her out the door!), and we don't feel at all ready for that.
Soon after her move to the CCU, we were told that she would be going home with a feeding tube and that Charley and I had to take an NG class (to learn how to insert the tube, if necessary, and to give her feeds and medications through the tube). We were both under the impression that we'd be working with the Speech Department to get her to take a bottle and to hopefully breastfeed one day. It was a big surprise to learn that the feeding tube wouldn't be coming out prior to our departure. Again, we felt like they were moving really fast and it is pretty overwhelming.
The other thing that has been frustrating is the concern about her oxygen levels. When we left the CICU, she was on room air. They were trying to wean her down to 21%, but she wasn't handling it well. They played around with the percentages and found that she was happiest with it between 25-30%. Since we've been in the CCU, they have continued to play around with her oxygen and to me, it feels like they are rushing to get her off of the oxygen. It is just another one of those hurdles that we are barrelling toward (and not necessarily ready to jump over!). Everytime we check in, the plan has changed and it is frustrating.
I certainly don't intend for this entry to be a big complaint, so I will share some of the benefits to being in the CCU. We were also given more opportunities to participate in her care - giving her a bath, changing the sheets on her bed, continuing to change diapers and that sort of thing. We can also hold her whenever we'd like. Charley and I have learned some of her cues and know that when she's cranky, she prefers to be patted gently while in her crib. It has been fun getting to know her a bit more. This morning Charley and I gave her a bath and then worked together to calm her down after she had an x-ray taken. It was nice because we felt like we were parenting our daughter and even though she is still surrounded by machines, it felt like we were providing the love and care that she needed. And, the bonus - we actually settled her down very quickly, which made us both feel really good.
In order to ease some of our concerns about the lightning pace that we felt we were on, Charley and I really wanted to sit down with one of the CCU attendings and ask a ton of questions concerning all of the various anomolies that Aurelia has. What types of things should we look for/be concerned about in the future for her heart, kidney, intestines, cleft palate, genetics, everything? We wanted to know about future care, follow-up care, and that sort of thing. I had the opportunity to talk with Dr, O'Connor, one of the attendings, but since he is just getting to know Aurelia, I decided not to bombard him with all of the questions (of which I didn't think he'd be able to answer at this time). I did, however, give him a heads up and basically said - get to know her case and then we can talk, because I have a bunch of questions that we need answered. Hopefully, in a day or two, we can start getting answers to some of those questions.
As much of our time here has been, this weekend was full of highs and lows. We learned that another family (who we knew from the RMH in Camden and moved to the Philly house shortly after us) lost their baby girl (also with HLHS) over the weekend. We were all reminded of how fragile these babies and their situations are. It was a heart-wrenching loss for a really nice family. On the up side of things, we had a nice (quick) visit with my dad and Uncle Mark, who drove down from CT for the day on Saturday. For me, another high was that I got to sleep in Aurelia's room last night. Since Charley was here with Madison (and my mom), I felt like I could stay the night at the hospital. In the CICU, sleeping cribside just isn't possible, so it was nice to be close to my baby all night long.
The other thing that was tough about Aurelia's first night in the CCU was that she was all alone. A tiny little baby in a big old crib, all by herself. I cried when we left because I was worried that no one would know if she was upset or sad or needed anything. After spending the night there with her, I feel much better about that situation! She is watched over and well-attended. Also, Aurelia does have a roommate now, a little boy named Hayden. He has 3 sisters, a mom and dad, and 2 grandparents. All of whom were visiting this evening when I went to spend some quiet time with Aurelia. The majority of my quiet visit was disturbed with many sounds of "Shhhhhhhhhhhhh..." from the mom, trying to quiet her girls down (even though the shushing was probably worse than the noise that the girls were making!). I had a nice visit with Aurelia, in spite of the shushing!
Our poor little Madison has a bit of cold right now, so we've decided to keep her away from the hospital for now. It is tough because I want Maddie to see her sister, but I don't want to chance Aurelia picking up any kind of respiratory illness. That is the last thing that she needs! For now, I'm trying to figure out how to juggle my time so that I'm spending enough time with both girls. Today went pretty well, so hopefully that trend will continue tomorrow!
I am exhausted so I am going to try to get to bed at a reasonable time. Thanks for reading and have a great night!
Love,
Jillian
Charley and I both know that Aurelia is in the best place possible and that this move to the CCU is a good thing, but because she was moved on the weekend, we feel like it is taking her new team a long time to get to know her and her case. We miss our nurses and doctors from the CICU! We also felt like our move to the CCU put us in a marathon sprint for the finishing line (getting her out the door!), and we don't feel at all ready for that.
Soon after her move to the CCU, we were told that she would be going home with a feeding tube and that Charley and I had to take an NG class (to learn how to insert the tube, if necessary, and to give her feeds and medications through the tube). We were both under the impression that we'd be working with the Speech Department to get her to take a bottle and to hopefully breastfeed one day. It was a big surprise to learn that the feeding tube wouldn't be coming out prior to our departure. Again, we felt like they were moving really fast and it is pretty overwhelming.
The other thing that has been frustrating is the concern about her oxygen levels. When we left the CICU, she was on room air. They were trying to wean her down to 21%, but she wasn't handling it well. They played around with the percentages and found that she was happiest with it between 25-30%. Since we've been in the CCU, they have continued to play around with her oxygen and to me, it feels like they are rushing to get her off of the oxygen. It is just another one of those hurdles that we are barrelling toward (and not necessarily ready to jump over!). Everytime we check in, the plan has changed and it is frustrating.
I certainly don't intend for this entry to be a big complaint, so I will share some of the benefits to being in the CCU. We were also given more opportunities to participate in her care - giving her a bath, changing the sheets on her bed, continuing to change diapers and that sort of thing. We can also hold her whenever we'd like. Charley and I have learned some of her cues and know that when she's cranky, she prefers to be patted gently while in her crib. It has been fun getting to know her a bit more. This morning Charley and I gave her a bath and then worked together to calm her down after she had an x-ray taken. It was nice because we felt like we were parenting our daughter and even though she is still surrounded by machines, it felt like we were providing the love and care that she needed. And, the bonus - we actually settled her down very quickly, which made us both feel really good.
In order to ease some of our concerns about the lightning pace that we felt we were on, Charley and I really wanted to sit down with one of the CCU attendings and ask a ton of questions concerning all of the various anomolies that Aurelia has. What types of things should we look for/be concerned about in the future for her heart, kidney, intestines, cleft palate, genetics, everything? We wanted to know about future care, follow-up care, and that sort of thing. I had the opportunity to talk with Dr, O'Connor, one of the attendings, but since he is just getting to know Aurelia, I decided not to bombard him with all of the questions (of which I didn't think he'd be able to answer at this time). I did, however, give him a heads up and basically said - get to know her case and then we can talk, because I have a bunch of questions that we need answered. Hopefully, in a day or two, we can start getting answers to some of those questions.
As much of our time here has been, this weekend was full of highs and lows. We learned that another family (who we knew from the RMH in Camden and moved to the Philly house shortly after us) lost their baby girl (also with HLHS) over the weekend. We were all reminded of how fragile these babies and their situations are. It was a heart-wrenching loss for a really nice family. On the up side of things, we had a nice (quick) visit with my dad and Uncle Mark, who drove down from CT for the day on Saturday. For me, another high was that I got to sleep in Aurelia's room last night. Since Charley was here with Madison (and my mom), I felt like I could stay the night at the hospital. In the CICU, sleeping cribside just isn't possible, so it was nice to be close to my baby all night long.
The other thing that was tough about Aurelia's first night in the CCU was that she was all alone. A tiny little baby in a big old crib, all by herself. I cried when we left because I was worried that no one would know if she was upset or sad or needed anything. After spending the night there with her, I feel much better about that situation! She is watched over and well-attended. Also, Aurelia does have a roommate now, a little boy named Hayden. He has 3 sisters, a mom and dad, and 2 grandparents. All of whom were visiting this evening when I went to spend some quiet time with Aurelia. The majority of my quiet visit was disturbed with many sounds of "Shhhhhhhhhhhhh..." from the mom, trying to quiet her girls down (even though the shushing was probably worse than the noise that the girls were making!). I had a nice visit with Aurelia, in spite of the shushing!
Our poor little Madison has a bit of cold right now, so we've decided to keep her away from the hospital for now. It is tough because I want Maddie to see her sister, but I don't want to chance Aurelia picking up any kind of respiratory illness. That is the last thing that she needs! For now, I'm trying to figure out how to juggle my time so that I'm spending enough time with both girls. Today went pretty well, so hopefully that trend will continue tomorrow!
I am exhausted so I am going to try to get to bed at a reasonable time. Thanks for reading and have a great night!
Love,
Jillian
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