Sunday, October 10, 2010
A quick update from crib-side
It has been a difficult few days for me as I adjust to all the changes that have unfolded at what feels like lightning pace. There are many updates to share and thoughts and feelings to get out on 'paper' but typing them on a smartphone isnt the best way to compose a post. I'll try and get something more substantial up later today, but I wanted any followers to know that Aurelia is a champ and doing just fine. More rto come soon!
Friday, October 8, 2010
Friday, October 8th
It was a relatively uneventful sort of day, which was actually quite nice! Madison had a bit of a runny nose yesterday and this morning, so I thought that it would be best to be safe and leave her at the Ronald McDonald House with my mom. I had breakfast with them and then left them to play in the playroom while I headed off to CHOP to spend some time with Aurelia. When I arrived it was time to pump, so I did that before I went to see our girl.
I got to her cribside around 9:15 and met with her nurse who informed me that I had just missed rounds. She caught me up though. They decided to start bolus feeds (every 3 hours) today. They had been giving her continuous feeds of about 18 mls an hour, which is technically full feeds). They wanted to put her on more of a schedule, so she would be getting the full 54 mls every 3 hours, at 12, 3, 6, and 9. Her first bolus feed was due to start at noon, so I planned to meet with Speech around 11:30. At that point, she was off of her continuous feeds for an hour and a half and the hope was that she would be hungry and we could try to feed her with a bottle (as opposed to her feeding tube, which is where she is getting all of her feeds currently). The first bottle feed went okay. She has the ability to suck, but because of her cleft palate, she can't press her tongue to the roof of her mouth and have it create the suction/pressure that one needs to draw the milk out of a regular bottle. I have some special bottles that we are going to use and there are other options, if these don't work. She took in a total of 1 ml via bottle and enjoyed the rest of her feed through her feeding tube! Because the Speech folks are only there Monday-Friday, we're going to wait until Monday to try again. In the mean time, I'm going to try some non-nutrative breast time while she's getting her feeds and hope that it will give her a sense of what a "normal" feed can be like. Having that skin-to-skin time will be really special and I'm looking forward to it!
I also met with someone from Occupational Therapy today who gave me some information about how we should handle Aurelia for the first 2-6 weeks post-op. For the first 2 weeks, she shouldn't have any tummy time (not something I was even considering!!) and for the first 6 weeks, we shouldn't be picking her up under her arms or sitting her up in a sitting position (again, I don't think that either of us were planning on doing that!). When we pick her up, we have to slide one arm under her shoulders and the other gets scooped under her buns. This will ease any discomfort that she has in her chest. The OT folks also gave me some information on scar massage, which we can start at six weeks post-op, as long as the incision has healed completly. There's not much to it - just small circular motions with our thumbs, going from top to bottom - but it will feel nice to Aurelia and it will help her scar become smaller. We can add some lotion or some Vitamin E, so it will be a nice experience for her, I hope. I wouldn't be surprised if that becomes a task that Madison wants to do for the baby!
The other big news that I got today is that it is likely that Aurelia will move out of the CICU and into the CCU tomorrow. That's right - moving on "up" to the step-down unit! She doesn't have too many of those Intensive Care hook-ups anymore, so she may be ready to move to the regular Cardiac Care Unit. Like yesterday, I was really surprised with how quickly things are happening. I asked her nurse about anticipated length of stay in the CCU (because home is the next step!) and she said anywhere from a couple of days to a couple of weeks. Because of her cleft palate and the expected feeding issues, it is likely that her stay will be closer to a couple of weeks because we want to make sure that she is capable of eating on her own.
After my nice morning with Aurelia, I picked up my mom and Maddie and we headed for the Please Touch Museum. I thought that it would be nice for Maddie to have some special time doing something fun. Long story short, we didn't make it there. The directions that we had were incorrect and we got pretty lost. Luckily, I pulled out my GPS (thank you, Charley!!) and we got ourselves to the hospital instead. We'll try to get to the museum over the weekend instead! Maddie had a quick visit with her sister and got so excited to see that Aurelia had a "pretty" in her hair (her nurses had put her in a purple onesie and had placed a tiny pink bow in her hair). She looked pretty darn adorable and Maddie was just tickled! We visited for a while and then headed back to the Ronald McDonald House for dinner. I got Madison her bath and then headed back to the hospital to spend a bit more time with Aurelia. I brought my computer and we Skyped with Charley for a while! It was great that he got to spend some time with Aurelia. Our nurse for the evening, Mercedes, even participated in the Skype session and answered some of Charley's questions about how Aurelia was doing. It was really nice to spend that time together, even if it was over the computer!
And now I am back at the Ronald McDonald House. It is very late and I am quite tired. I know that I haven't been getting enough sleep, but I don't usually feel tired during the day. It often hits me right after dinner, when it is time to settle Madison down for bed. Sometimes that makes settling her down even harder. I just want to cuddle up and go to sleep - shouldn't she want to do that too? No, she likes to have stories and then she likes to lay on my bed while I pat her back for a while. Eventually she falls asleep, but sometimes it takes a really long time! Tonight, I skipped out and let my mom put her to bed. I felt really guilty about leaving her, but sometimes I need a break from it. I never thought that I would say that and I'm not sure that I like it, but I guess that is part of being a mom to 2 children. You do everything to can to be there for both of them, but sometimes one child needs you a bit more.
Even though I was so tired tonight, I'm really glad that I went back to the hospital. It was fun being there when there weren't too many other parents around. The pod was quiet and I could quietly enjoy time with my daughter and listen to the hub-bub of the nurses. They had the Phillies website up and there were constant updates about how the game was progressing. They were also working on putting together a take-out order for most of my visit. I think that the final order was placed around 9:30 and there were probably 20 different things that were ordered! It reminded me of the show Scrubs, which I adored. I tried to pick out nurses and doctors and orderlies who reminded me of various characters from the show and I told Aurelia all about it. She seems to like it when I talk to her because she coos and sometimes grins. Maybe it is gas, but I like to think that she enjoys hearing my stories!
Tomorrow Charley will be back and I'm sure that one of us will have another update to post. Can't wait to see him! And I think that both girls will be thrilled to have their daddy back too! For now, good night!
I got to her cribside around 9:15 and met with her nurse who informed me that I had just missed rounds. She caught me up though. They decided to start bolus feeds (every 3 hours) today. They had been giving her continuous feeds of about 18 mls an hour, which is technically full feeds). They wanted to put her on more of a schedule, so she would be getting the full 54 mls every 3 hours, at 12, 3, 6, and 9. Her first bolus feed was due to start at noon, so I planned to meet with Speech around 11:30. At that point, she was off of her continuous feeds for an hour and a half and the hope was that she would be hungry and we could try to feed her with a bottle (as opposed to her feeding tube, which is where she is getting all of her feeds currently). The first bottle feed went okay. She has the ability to suck, but because of her cleft palate, she can't press her tongue to the roof of her mouth and have it create the suction/pressure that one needs to draw the milk out of a regular bottle. I have some special bottles that we are going to use and there are other options, if these don't work. She took in a total of 1 ml via bottle and enjoyed the rest of her feed through her feeding tube! Because the Speech folks are only there Monday-Friday, we're going to wait until Monday to try again. In the mean time, I'm going to try some non-nutrative breast time while she's getting her feeds and hope that it will give her a sense of what a "normal" feed can be like. Having that skin-to-skin time will be really special and I'm looking forward to it!
I also met with someone from Occupational Therapy today who gave me some information about how we should handle Aurelia for the first 2-6 weeks post-op. For the first 2 weeks, she shouldn't have any tummy time (not something I was even considering!!) and for the first 6 weeks, we shouldn't be picking her up under her arms or sitting her up in a sitting position (again, I don't think that either of us were planning on doing that!). When we pick her up, we have to slide one arm under her shoulders and the other gets scooped under her buns. This will ease any discomfort that she has in her chest. The OT folks also gave me some information on scar massage, which we can start at six weeks post-op, as long as the incision has healed completly. There's not much to it - just small circular motions with our thumbs, going from top to bottom - but it will feel nice to Aurelia and it will help her scar become smaller. We can add some lotion or some Vitamin E, so it will be a nice experience for her, I hope. I wouldn't be surprised if that becomes a task that Madison wants to do for the baby!
The other big news that I got today is that it is likely that Aurelia will move out of the CICU and into the CCU tomorrow. That's right - moving on "up" to the step-down unit! She doesn't have too many of those Intensive Care hook-ups anymore, so she may be ready to move to the regular Cardiac Care Unit. Like yesterday, I was really surprised with how quickly things are happening. I asked her nurse about anticipated length of stay in the CCU (because home is the next step!) and she said anywhere from a couple of days to a couple of weeks. Because of her cleft palate and the expected feeding issues, it is likely that her stay will be closer to a couple of weeks because we want to make sure that she is capable of eating on her own.
After my nice morning with Aurelia, I picked up my mom and Maddie and we headed for the Please Touch Museum. I thought that it would be nice for Maddie to have some special time doing something fun. Long story short, we didn't make it there. The directions that we had were incorrect and we got pretty lost. Luckily, I pulled out my GPS (thank you, Charley!!) and we got ourselves to the hospital instead. We'll try to get to the museum over the weekend instead! Maddie had a quick visit with her sister and got so excited to see that Aurelia had a "pretty" in her hair (her nurses had put her in a purple onesie and had placed a tiny pink bow in her hair). She looked pretty darn adorable and Maddie was just tickled! We visited for a while and then headed back to the Ronald McDonald House for dinner. I got Madison her bath and then headed back to the hospital to spend a bit more time with Aurelia. I brought my computer and we Skyped with Charley for a while! It was great that he got to spend some time with Aurelia. Our nurse for the evening, Mercedes, even participated in the Skype session and answered some of Charley's questions about how Aurelia was doing. It was really nice to spend that time together, even if it was over the computer!
And now I am back at the Ronald McDonald House. It is very late and I am quite tired. I know that I haven't been getting enough sleep, but I don't usually feel tired during the day. It often hits me right after dinner, when it is time to settle Madison down for bed. Sometimes that makes settling her down even harder. I just want to cuddle up and go to sleep - shouldn't she want to do that too? No, she likes to have stories and then she likes to lay on my bed while I pat her back for a while. Eventually she falls asleep, but sometimes it takes a really long time! Tonight, I skipped out and let my mom put her to bed. I felt really guilty about leaving her, but sometimes I need a break from it. I never thought that I would say that and I'm not sure that I like it, but I guess that is part of being a mom to 2 children. You do everything to can to be there for both of them, but sometimes one child needs you a bit more.
Even though I was so tired tonight, I'm really glad that I went back to the hospital. It was fun being there when there weren't too many other parents around. The pod was quiet and I could quietly enjoy time with my daughter and listen to the hub-bub of the nurses. They had the Phillies website up and there were constant updates about how the game was progressing. They were also working on putting together a take-out order for most of my visit. I think that the final order was placed around 9:30 and there were probably 20 different things that were ordered! It reminded me of the show Scrubs, which I adored. I tried to pick out nurses and doctors and orderlies who reminded me of various characters from the show and I told Aurelia all about it. She seems to like it when I talk to her because she coos and sometimes grins. Maybe it is gas, but I like to think that she enjoys hearing my stories!
Tomorrow Charley will be back and I'm sure that one of us will have another update to post. Can't wait to see him! And I think that both girls will be thrilled to have their daddy back too! For now, good night!
Thursday, October 7, 2010
A busy day for a two-week old!
It is not yet 3 pm and our girl has had yet another big day! She was doing very well with her feeds, so they have bumped her up to 18 mls an hour. She is on hourly/continuous feeds currently, but by tomorrow she should be put on a 3-hour schedule. I am currently waiting to see someone from the Speech Department to talk about oral feeds and the possibilities of breast feeding. Because of her cleft palette, it is possible that she will never be able to breast feed. We are going to do our best though, and even if she can't actually nurse, she will get plenty of non-nutritive breast time.
I arrived here this morning around 8:30 and met with her nurse for the day, Tommy. I had just missed rounds, but Tommy told me about all of the things that would be happening today - she had both of the lines in her belly button removed and they were about to remove her RA line and the pacing wires that go into her heart. They allowed me to stay for the procedure, which was quick and relatively uneventful. Our girl is a bleeder though and bled from both locations for quite a while. While it wasn't a large amount of blood, it was fairly continuous, so the nurses were mildly concerned. Dr. Ince came over to check on her throughout the morning and both locations eventually clotted and stopped bleeding.
The dressing on her chest had been removed yesterday and she started to bleed (though very very slightly) from the lowest spot on the incision again. The doctors still believe that it is mostly fluid mixed with a bit of blood and that her body is simply "sponging" it out. Again, they are not overly concerned. We do have to be careful when we change her or when she gets upset because she tenses up her body and as a result she squeezes her chest and the fluid/blood mixture will "ooze" out of her. Tommy placed some secured dressings on it and hopefully that will help it clot up and stop oozing.
Speaking of changing, she had 2 poops last night and a 3rd one while I was with her. Honestly, I have never been so excited about poop! In fact, she had the most boisterous diaper-filling that I have heard in quite some time. I was laughing in the CICU! Laughing at my tiny daughter's ginormous toots. It made me remember those first few weeks with Madison and how surprised Charley and I were about how something so small could produce something so disgusting! It made me really happy though to be experiencing the same thing with Aurelia. It is starting to change from the black meconium stools that babies have when they are first born into something more like baby poop. This can be attributed to the breast milk that she is now getting in her body. In fact, she has been taken off of all of the nutrients that she was being fed since she was born. Her current diet consists solely of breast milk, which makes Mama really happy! All that pumping is well worth it!
So, to re-cap, our daughter currently has a feeding tube (in her nose), a nasal cannula that is giving her lungs a little boost with room air (it was at 50% last time I checked), an IV in her right foot, and a blood pressure cuff on her left ankle. She has a wire taped onto her left hand. That measures her pulse and oxygen levels. She has 3 additional leads on her chest and belly, keeping track of her heart beat and bp. That's about it. Other than the feeding tube and IV, there isn't anything inserted into her body. This is huge compared to just 2 days ago when she had a breathing tube, a chest tube, 2 belly button lines, pacing wires into her heart, an RA line, and everything else listed above. I will say that it has been pretty overwhelming knowing that my daughter had open-heart surgery just 3 days ago and she is now minimally "wired." I kept thinking, "Aren't they going a little fast? Should they be removing all of these things so soon?" I felt very reassured when Dr. Svast (one of the head Cardiology folks) stopped by and said that it was great that they were removing everything because there would be a lesser chance of infection.
Once again, I'm really proud of our little girl. She handled everything beautifully today. She even let Mama give her a bit of a sponge bath, to clean up the dried blood and some of the orange dye that remained from her surgery. After the bath, she got bundled up like a burrito and then spent a few minutes in Mama's arms. I was so excited to get to hold her again. I sang to her and cuddled with her while she made some sweet baby cooing sounds. I fell in love with her during those moments and can't wait to hold her again.
One thing about the CICU that is frustrating, but completely understandable, is that when another baby is being admitted into a pod or coming back from surgery, all non-medical folks get booted from the room for at least 30 minutes (usually longer). I appreciated it when Aurelia came back from surgery and Charley and I got to spend a few minutes with her before others were allowed back in, so I understand that this is necessary. But, I was enjoying my sweet baby-holding time and had to cut it quite short! Luckily, I'll be heading back in shortly and will get to have my girl in my arms again. I will try to get some pictures too and add those later on this evening.
I arrived here this morning around 8:30 and met with her nurse for the day, Tommy. I had just missed rounds, but Tommy told me about all of the things that would be happening today - she had both of the lines in her belly button removed and they were about to remove her RA line and the pacing wires that go into her heart. They allowed me to stay for the procedure, which was quick and relatively uneventful. Our girl is a bleeder though and bled from both locations for quite a while. While it wasn't a large amount of blood, it was fairly continuous, so the nurses were mildly concerned. Dr. Ince came over to check on her throughout the morning and both locations eventually clotted and stopped bleeding.
The dressing on her chest had been removed yesterday and she started to bleed (though very very slightly) from the lowest spot on the incision again. The doctors still believe that it is mostly fluid mixed with a bit of blood and that her body is simply "sponging" it out. Again, they are not overly concerned. We do have to be careful when we change her or when she gets upset because she tenses up her body and as a result she squeezes her chest and the fluid/blood mixture will "ooze" out of her. Tommy placed some secured dressings on it and hopefully that will help it clot up and stop oozing.
Speaking of changing, she had 2 poops last night and a 3rd one while I was with her. Honestly, I have never been so excited about poop! In fact, she had the most boisterous diaper-filling that I have heard in quite some time. I was laughing in the CICU! Laughing at my tiny daughter's ginormous toots. It made me remember those first few weeks with Madison and how surprised Charley and I were about how something so small could produce something so disgusting! It made me really happy though to be experiencing the same thing with Aurelia. It is starting to change from the black meconium stools that babies have when they are first born into something more like baby poop. This can be attributed to the breast milk that she is now getting in her body. In fact, she has been taken off of all of the nutrients that she was being fed since she was born. Her current diet consists solely of breast milk, which makes Mama really happy! All that pumping is well worth it!
So, to re-cap, our daughter currently has a feeding tube (in her nose), a nasal cannula that is giving her lungs a little boost with room air (it was at 50% last time I checked), an IV in her right foot, and a blood pressure cuff on her left ankle. She has a wire taped onto her left hand. That measures her pulse and oxygen levels. She has 3 additional leads on her chest and belly, keeping track of her heart beat and bp. That's about it. Other than the feeding tube and IV, there isn't anything inserted into her body. This is huge compared to just 2 days ago when she had a breathing tube, a chest tube, 2 belly button lines, pacing wires into her heart, an RA line, and everything else listed above. I will say that it has been pretty overwhelming knowing that my daughter had open-heart surgery just 3 days ago and she is now minimally "wired." I kept thinking, "Aren't they going a little fast? Should they be removing all of these things so soon?" I felt very reassured when Dr. Svast (one of the head Cardiology folks) stopped by and said that it was great that they were removing everything because there would be a lesser chance of infection.
Once again, I'm really proud of our little girl. She handled everything beautifully today. She even let Mama give her a bit of a sponge bath, to clean up the dried blood and some of the orange dye that remained from her surgery. After the bath, she got bundled up like a burrito and then spent a few minutes in Mama's arms. I was so excited to get to hold her again. I sang to her and cuddled with her while she made some sweet baby cooing sounds. I fell in love with her during those moments and can't wait to hold her again.
One thing about the CICU that is frustrating, but completely understandable, is that when another baby is being admitted into a pod or coming back from surgery, all non-medical folks get booted from the room for at least 30 minutes (usually longer). I appreciated it when Aurelia came back from surgery and Charley and I got to spend a few minutes with her before others were allowed back in, so I understand that this is necessary. But, I was enjoying my sweet baby-holding time and had to cut it quite short! Luckily, I'll be heading back in shortly and will get to have my girl in my arms again. I will try to get some pictures too and add those later on this evening.
Wednesday, October 6, 2010
Jillian's Turn, October 6th - 12 days old
Here we are, two days after I was originally scheduled to deliver Aurelia. In fact, she is now twelve days old and it is two days after her second surgery. My post this evening is kind of a mish-mash of various feelings surrounding the surgery, post-surgery, how Madison is doing, the CHD community, and my sadness over the distance that Charley and I must endure for a few days each week.
To start, open heart surgery is a scary thing, no matter what age. But an infant, less than 8 pounds, with additional things that are wrong with her tiny body - now that is damn frightening. Monday, as Charley wrote, was a tough day for us. The early morning was calm and somewhat serene as we enjoyed a bit of quiet time with our little girl. The anticipation of what was to come almost got in the way of our peaceful time together. And when the hustle and bustle of surgery prep started, the day turned into a very long wait.
Finally, after many hours with many updates, we were allowed to see our daughter. Those first few moments with her were a mixture of emotions and questions. Our nurse walked us through each tube and stitch on her body, explaining what each one was doing and how long it would remain in place. I was surprised with how puffy our girl looked, but with all of the extra fluid that was pumped into her body, this should not have been a surprise. The breathing tube that was inserted into her nose made her face look a bit distorted. This, on top of the puffiness, made us decide that we wouldn't bring Madison in to see her sister until that tube was removed. So far Madison has been interested in her baby sister and we didn't want to frighten her.
When that reunion took place, just a day later, Madison was thrilled to see her sister again and didn't bat an eyelash at the large guaze dressing that hid her incision. Instead, Maddie wanted to "boop" Aurelia's nose and to play "This Little Piggy" on her toes. It was very dear and made me so proud of my older daughter. I know that kids are relsilient and that they are very good at adapting to new situations, but Maddie really has been through quite a bit over the last month or so. She hasn't been home since the middle of September. She has been sleeping in a Pack 'N Play. Most of her toys and books are still at home. She hasn't seen her kitty cats. She spends part of each day at a hospital and the other part of her day at a Ronald McDonald House in a city that she has never visited. She has a new sister and she seems to be tickled by her. Yes, I am very proud of how well our Madison has handled all of these changes.
I recently posted something on Facebook and I wanted to clarify for anyone who reads my posts and was confused. I posted that the CHD community has lost 9 precious babies in the last week or so. I am "friends" on Facebook with a bunch of folks who have or have lost children to Congenital Heart Defects. I also follow a few blogs of other parents who have children with CHDs, particularly HLHS. The "community" that I wrote about in my Facebook status referred to the families (and by extension, those that they know) that I have friended on Facebook. I don't actually know any of them, but their children and their struggles are dear to me and hearing about each loss has been difficult this week in particular. There are many victories that I hear about too and right now our little Aurelia seems to be one of those victories among all of the losses. One of those golden stories that will, hopefully, allow us all to see the light in all of the darkness that these other losses has caused.
Speaking of community, I will say that staying at the Ronald McDonald House has been an amazing community for us. We started out at the house in Camden and when we moved here to Philly, there were several families that had also relocated here. And there have been quite a few since. We have a community here too. In fact, many of the families here have children with HLHS or other CHDs. I frequently see several of the other families in the CICU when I am with Aurelia. It is nice to simply say "hi" and to know that those folks know what you are going through. I pray for our little girl each night (and many times throughout the day) and I always include the little ones that share her pod in the CICU and the little ones of the other families that we've gotten to know. We are all here because we need to be and it is nice to have this community as well. We share dinners together and have simple conversations - how's your baby doing today? - that are anything but simple. It is nice to have others who are in the same place as you, just hoping that their child will be okay.
Charley headed back to G'burg today, which was sad for all of us. I have hospital visits and Madison to keep me busy, but I would much rather be doing those things with Charley. I am sure that he's having a tough time being at home without any of us there with him. I can imagine that the house feels empty and quiet without Madison's footsteps or dancing toes twirling throughout the living room. I am happy that we will all be together again on Saturday, but until then, the being "alone" sucks.
Finally for tonight, I want to say thank you to all of you who are reading this blog. Charley has said it before, but we both truly appreciate the love and support that you are all giving to us. We enjoy reading one another comments from friends or acquaintances or to try to figure out how we know some of you readers. It helps to know that there are so many of your out there, sharing in Aurelia's journey. Our little girl is loved by so many people and that gives us the strength to continue to help her overcome the odds. Thank you for checking in!
The pictures above are from today. Many of you have been asking for new pictures and I believe that Charley is working on getting some others inserted into previous posts. We have lots of pictures, but we've been lax about getting them on here! Here are a few for now. More will certainly be added soon!
Lots of Love,
Jillian
Jillian
So where are we now?
After the long journey of the past couple days there are so many things to write about and so many improvements and challenges that time has slipped away from us and this update is coming essentially a day late.
Because of all that's gone on, I think I'm going to take a less elegant approach to this post and provide a snapshot via list of Aurelia's journey and current situation.
Yesterday, day one of Aurelia's recovery, featured some great strides and a few setbacks, but all in all it was a very good day.
- Aurelia's incision looked good and the amount of blood coming from her chest cavity fell so much that the doctor's removed her drainage tube.
- Similarly, her blood-gas readings progressed to such a point that the doctors removed both her breathing tube (taking her off the respirator) and her sump (leaving her intestines to process all the fluid/nutrients in her stomach.
- In preparation for feedings later in the day the team installed a feeding tube through her left nostril. As a side note, when they removed the breathing tube and suctioned out her nose in advance of inserting her feeding tube the doctor's pulled out more mucus and snot and dried blood than I knew possible. It makes me more than a little sketched out to think about just what is sitting in my sinuses.
- Our first scare came when Aurelia had a wet diaper. As silly as that sounds, Aurelia so hates wet diapers that she worked herself into a fierce frenzy that resulted in a back flow of non-oxygenated blood above her pulmonary artery. This, literally, turned Aurelia blue. As the blood Aurelia needed to oxygenate got clogged above her pulmonary artery her oxygen saturation rate fell precipitously and the team installed a nasal line and forced room air into her lungs at 70% capacity. After about fifteen minutes of actually suffocating her body Aurelia calmed down and over the course of the evening the team dialed back her room oxygen intake to 50% (where it remained until earlier today when it dropped to 40%).
- Our second setback came when Aurelia's fluid intake level became too high. While she did pee (thank God for the pee!), she hadn't had any bowel movements and she wasn't peeing nearly enough. This kept us from starting scheduled feeds and prevented us from doing anything than a mouth treatment, or a coating of the lips and gums with breast milk.
Evening rounds passed without event and when we arrived this morning our current situation two days after the surgery included:
- Aurelia still having too much fluid in her, an x-ray showing hazy lungs, and lasix being ordered for her to compensate her decreased kidney output.
- Two bowel movements (yippee!) putting us back on schedule for feedings to start today.
- Bleeding from her incision (yikes!) that was clearly more than post-operation oozing, but not enough bleeding to cause a change in her vital signs. Still, it was worrisome enough to generate two ultrasounds and an x-ray
- a slight increase in the amount of fluid her kidney processed resulting in only a +100 or so intake from her second day.
Thankfully, we had a good day after those few concerns. Genetic screening (a genome array test) came back and showed no anomalies, meaning that as of now Aurelia and all her problems is simply our beautiful and perfect freak of nature and not the victim of a genetic disorder. Our geneticists are ordering one last test that is the best insurance can buy to see if there are any abnormalities at all that could account for all these problems. This test will take some time to come back, but we are thrilled to know that there is no genetic syndrome at play in our new daughter's struggles.
Additionally, Aurelia had only one real temper tantrum today and she recovered well, meaning that we didn't need to increase the amount of oxygen she received. Similarly, the ultrasound of her head and chest (as well as the x-ray) came back negative, proving that her heart was not bleeding and that there was no fluid build up around her heart or in her heart cavity, or around her lungs. The best guess of the team is that her chest muscles acquired increased blood levels during and after surgery and this is the subsequent squeezing of a sponge; her muscles releasing this blood intake and her incision becoming the natural outlet for the blood.
Dr. Ince also heard bowel sounds during her rounds and because of the two bowel movements we started Aurelia on feeds through her nasal tube. She has had two 5 ml feedings and one 10 ml feeding as of my writing. She will get feeds every three hours or so, barring any complications.
Lastly, Aurelia has had two ENORMOUS diapers, and when we say enormous we mean GARGANTUAN! These things weighed a ton, by all accounts. Or maybe a couple of ounces, but still, it means that she's now really passing that fluid.
Other than that, the medical news is stable and good. She's progressing well and it seems as if the bleeding at her incision has slowed. I'll keep you posted as I learn more and perhaps post a more 'human' reaction to the last several days.
With love,
Charley
Because of all that's gone on, I think I'm going to take a less elegant approach to this post and provide a snapshot via list of Aurelia's journey and current situation.
Yesterday, day one of Aurelia's recovery, featured some great strides and a few setbacks, but all in all it was a very good day.
- Aurelia's incision looked good and the amount of blood coming from her chest cavity fell so much that the doctor's removed her drainage tube.
- Similarly, her blood-gas readings progressed to such a point that the doctors removed both her breathing tube (taking her off the respirator) and her sump (leaving her intestines to process all the fluid/nutrients in her stomach.
- In preparation for feedings later in the day the team installed a feeding tube through her left nostril. As a side note, when they removed the breathing tube and suctioned out her nose in advance of inserting her feeding tube the doctor's pulled out more mucus and snot and dried blood than I knew possible. It makes me more than a little sketched out to think about just what is sitting in my sinuses.
- Our first scare came when Aurelia had a wet diaper. As silly as that sounds, Aurelia so hates wet diapers that she worked herself into a fierce frenzy that resulted in a back flow of non-oxygenated blood above her pulmonary artery. This, literally, turned Aurelia blue. As the blood Aurelia needed to oxygenate got clogged above her pulmonary artery her oxygen saturation rate fell precipitously and the team installed a nasal line and forced room air into her lungs at 70% capacity. After about fifteen minutes of actually suffocating her body Aurelia calmed down and over the course of the evening the team dialed back her room oxygen intake to 50% (where it remained until earlier today when it dropped to 40%).
- Our second setback came when Aurelia's fluid intake level became too high. While she did pee (thank God for the pee!), she hadn't had any bowel movements and she wasn't peeing nearly enough. This kept us from starting scheduled feeds and prevented us from doing anything than a mouth treatment, or a coating of the lips and gums with breast milk.
Evening rounds passed without event and when we arrived this morning our current situation two days after the surgery included:
- Aurelia still having too much fluid in her, an x-ray showing hazy lungs, and lasix being ordered for her to compensate her decreased kidney output.
- Two bowel movements (yippee!) putting us back on schedule for feedings to start today.
- Bleeding from her incision (yikes!) that was clearly more than post-operation oozing, but not enough bleeding to cause a change in her vital signs. Still, it was worrisome enough to generate two ultrasounds and an x-ray
- a slight increase in the amount of fluid her kidney processed resulting in only a +100 or so intake from her second day.
Thankfully, we had a good day after those few concerns. Genetic screening (a genome array test) came back and showed no anomalies, meaning that as of now Aurelia and all her problems is simply our beautiful and perfect freak of nature and not the victim of a genetic disorder. Our geneticists are ordering one last test that is the best insurance can buy to see if there are any abnormalities at all that could account for all these problems. This test will take some time to come back, but we are thrilled to know that there is no genetic syndrome at play in our new daughter's struggles.
Additionally, Aurelia had only one real temper tantrum today and she recovered well, meaning that we didn't need to increase the amount of oxygen she received. Similarly, the ultrasound of her head and chest (as well as the x-ray) came back negative, proving that her heart was not bleeding and that there was no fluid build up around her heart or in her heart cavity, or around her lungs. The best guess of the team is that her chest muscles acquired increased blood levels during and after surgery and this is the subsequent squeezing of a sponge; her muscles releasing this blood intake and her incision becoming the natural outlet for the blood.
Dr. Ince also heard bowel sounds during her rounds and because of the two bowel movements we started Aurelia on feeds through her nasal tube. She has had two 5 ml feedings and one 10 ml feeding as of my writing. She will get feeds every three hours or so, barring any complications.
Lastly, Aurelia has had two ENORMOUS diapers, and when we say enormous we mean GARGANTUAN! These things weighed a ton, by all accounts. Or maybe a couple of ounces, but still, it means that she's now really passing that fluid.
Other than that, the medical news is stable and good. She's progressing well and it seems as if the bleeding at her incision has slowed. I'll keep you posted as I learn more and perhaps post a more 'human' reaction to the last several days.
With love,
Charley
Tuesday, October 5, 2010
Her next heartbeat
Jillian and I are the sort of tired happy that comes after a long car trip - happy to be at your destination, unsure of exactly how you got there, and worried about what else could possibly go wrong before the day is over.
Aurelia is amazing. I am astounded at her resiliency and fortitude. This girl was born with so many complications, so many problems, endured invasive bowel surgery during her first day and followed up that performance with open heart surgery at age eleven days. Just yesterday her sternum was cracked, her ribs spread wide, and her body frozen into submission. Today she is resting, with a half-smile on her face and covered in residual orange dye; a silly sort of October pumpkin.
The surgery yesterday took far longer than we had hoped or even considered. Aurelia was out of our hands and actually in surgery from seven-thirty in the morning to three in the afternoon. In surgery the doctors changed their game plan after they saw the situation in her heart. The initial plan included putting Aurelia on bypass and then banding her pulmonary artery before making any incisions into the actual heart (excluding the sack that exists around the muscle). When they got in to her chest, however, they recognized that the aortic arch was far more narrowed than anticipated and required their skilled attention first. Thankfully, Dr. Gruber insisted on going in her chest and his decision made sure that they widened all of the narrowed parts of`Aurelia's arch; had they done the previously mentioned side incision they would have missed part of her narrowed aorta and would have likely needed to do a second surgery.
While I am on the topic of Dr. Gruber, I want to make sure I record just how amazing it was to see him in action yesterday morning. On Sunday all of the cardiac surgeons & fellows, some fifteen in all, met and discussed Aurelia's case. Dr. Gruber chaired that meeting from Cleveland (he was at a speaking engagement) and apparently a number of the team disagreed with his assessment that we enter Aurelia's chest cavity from the front.
When we met with Dr. Pillai that Sunday afternoon the message we received was that of the dissenting team members - that Aurelia's surgery would be from the side, most likely - and we were happy with the decision to go with a less invasive procedure. At crib-side Monday morning Dr. Gruber gave us one final debriefing on the procedure and mentioned going in from the front. Jillian noticed the discrepancy immediately and made mention of the plans we heard the day before to go in through her ribcage.
Dr. Gruber underwent some sort of Fellow Transformation, reserved for only the experts in his field. First he ordered one nurse (or doctor, for that matter - nobody outranked him during those next few moments, no matter their title) to retrieve Aurelia's paperwork. He concisely, but not rudely, discredited the fellow who conferenced with us Sunday by indicating his utter displeasure with our receiving incorrect information. His words to us included, "I'm not sure what that Fellow heard or said, but there clearly was a miscommunication. The plan was never to go in through the side. There was some questioning of what our final decision would be, but I clearly ruled out going in from the side."
After he directed the many staff to clean and re-stamp Aurelia on the front of her chest he called surgery and seemed pleased that everyone in the operating room had been planning to go in through Aurelia's chest. Thankfully the repair to Aurelia's arch, facilitated by that decision to open her chest, went without incident. I have such a hard time trying to imagine my daughter laying on an operating table with her chest open wide and blue from the cold that has shut down all the major systems of her body. I just can't fathom what it looked like to watch her heart slow and slow one beat at a time until it sat silent and still. I cry thinking about her there, her body dead and a machine carrying precious oxygen and blood to her brain and limbs.
The surgical team moved quickly after that, repairing the band and slowly moving Aurelia off bypass. At this point the first of the challenges facing Aurelia (as if all that came before was easy!) manifested itself in the form of excessive bleeding. Throughout any complicated surgery like this many nicks and cuts are made in the body, along veins and organs and muscle and tissue, but very rarely is bleeding seen by the surgical team. A body in Aurelia's state is so cold that you can't see the amount of bleeding until they begin to take her off bypass and warm her up, waking her heart from its slumber.
Aurelia underwent a series of cooling procedures over two and a half hours to slow the excessive bleeding inside her chest cavity. These procedures amounted to literally filling Aurelia with ice, waiting fifteen minutes, warming her up again, checking for bleeding and re-applying ice if needed. Eventually Aurelia's leaks sealed themselves and the doctors made sure that all the vents and lines into her firmly lay in place. At that point Aurelia had a drainage line installed, two pacemaker wires, an IV directly to her chest cavity and heart, another IV in her foot, and an arterial line into her belly button.
We met with Dr. Gruber after the surgery for his recounting of the surgery and he showed enthusiasm and pleasure with Aurelia's progress. Other than her bleeding he felt confident that she would emerge from the procedure with much improved breathing and heart function. Dr. Gruber decided to set the pulmonary artery function at 90% its original and he avoided looking for other potential problems with Aurelia's mitral valve and her existing muscular VSD (the large hole between her left and right ventricle). Jillian and I were happy with the outcome and Dr. Gruber's decision to avoid looking for further problems with Aurelia's valve and hole, because both may improve themselves over time and because the valve may actually not have much of a problem once her heart regains strength.
When we first saw Aurelia we were thrilled. As scary and difficult as it was to look at her I will never forget the joy in my heart at that moment. All that afternoon and evening I felt like running and hugging and kissing everyone I saw, from Dr. Ince to the admitting orderly out by the entrance to the CICU. Jillian felt more than mild embarrassment at my excitement and expression. I don't blame her. It's quite possible that I mortified not only Jillian, but Aurelia, too.
After about one hour the bleeding from Aurelia's chest cavity slowed to barely a trickle and we started to face the second and far worse concern with her surgery, this time revolving around urine. When put on bypass and our temperatures lowered our systems shut down one by one. As we come back to life our body slowly regains heat (Aurelia's temperature still hadn't reached normal two hours after her surgery finished) in controlled increments and the body's systems begin to reboot one by one. We skipped over any trouble with Aurelia's respiratory system by having her on the machine that took care of that process for her, her bleeding in her circulatory system had slowly come under control, her nervous system seemed to be intact, she hadn't suffered any strokes, and brain function appeared normal.
Unfortunately, prior to, during, and after surgery Aurelia hadn't passed any urine through her catheter. In any normal person this wouldn't raise much of a concern, but with only one kidney the chance of system shock and failure meant life or death for our baby girl. Dr. Ince, whose praises I sang before, kept a measured response and reassured Jillian and I that this sort of delay did not mean anything out of the ordinary. Stressed nonetheless we felt increasing tension as the minutes went by and as the staff began discussing their response to a kidney failure. The sheer mention of 'what if' scenarios had me in near panic. All I wanted for her was to pee. I have never, ever, wanted anyone to pee so badly in my life.
She kept us waiting nearly two hours, the cut off point for 'no concern' we later found out, until we saw a few drops in her catheter. I about jumped for joy at the sight of a yellow droplet in her tube. This seems silly, I suppose, but looking at her bruised chest, swollen face and arms, and knowing that all that fluid she had been infused with during surgery had to escape, I think I actually felt more fear than I did when they wheeled her away for the operation earlier that morning.
We stayed late last evening with her and left her happy that she once again faced down tough odds and beat them with courage and tenacity. Though a machine was breathing for her and her chest still bled some, and despite the low urine output, Aurelia inspired strength and hope in us that we needed to fight back the worry and concern we felt all day.
I confess that at points during the day I let my mind drift away to places dark and sad, wondering what it would be like to lose her. We agreed to participate in a genetic study before Aurelia's surgery, permitting the CHOP staff to keep tissue and blood samples from Aurelia's heart permanently. Dr. Gruber and his team will use the sample (amongst many others) to try and identify the genetic cause behind HLHS. It is suspected that the disease is genetic, but much more work needs to be done before a specific cause is identified. I found a minuscule measure of comfort knowing that even if she died, Aurelia's heart and blood could still help someone else at risk of HLHS. I even felt good knowing that if Aurelia's DNA showed anything even remotely useful that Jillian and I could then give our own DNA and blood to support scholarship and research into the defect.
As for today, other than one minor scare, Aurelia continues to do well. I'll give a more detailed post a little later, but I know folks have been waiting for details so I wanted to write this before my memory lost pieces of Aurelia's journey.
Thank you everyone, for all your positive thoughts and prayers and love. Your support has resulted in immeasurable strength needed and used by Jillian and me. We love you.
Aurelia is amazing. I am astounded at her resiliency and fortitude. This girl was born with so many complications, so many problems, endured invasive bowel surgery during her first day and followed up that performance with open heart surgery at age eleven days. Just yesterday her sternum was cracked, her ribs spread wide, and her body frozen into submission. Today she is resting, with a half-smile on her face and covered in residual orange dye; a silly sort of October pumpkin.
The surgery yesterday took far longer than we had hoped or even considered. Aurelia was out of our hands and actually in surgery from seven-thirty in the morning to three in the afternoon. In surgery the doctors changed their game plan after they saw the situation in her heart. The initial plan included putting Aurelia on bypass and then banding her pulmonary artery before making any incisions into the actual heart (excluding the sack that exists around the muscle). When they got in to her chest, however, they recognized that the aortic arch was far more narrowed than anticipated and required their skilled attention first. Thankfully, Dr. Gruber insisted on going in her chest and his decision made sure that they widened all of the narrowed parts of`Aurelia's arch; had they done the previously mentioned side incision they would have missed part of her narrowed aorta and would have likely needed to do a second surgery.
While I am on the topic of Dr. Gruber, I want to make sure I record just how amazing it was to see him in action yesterday morning. On Sunday all of the cardiac surgeons & fellows, some fifteen in all, met and discussed Aurelia's case. Dr. Gruber chaired that meeting from Cleveland (he was at a speaking engagement) and apparently a number of the team disagreed with his assessment that we enter Aurelia's chest cavity from the front.
When we met with Dr. Pillai that Sunday afternoon the message we received was that of the dissenting team members - that Aurelia's surgery would be from the side, most likely - and we were happy with the decision to go with a less invasive procedure. At crib-side Monday morning Dr. Gruber gave us one final debriefing on the procedure and mentioned going in from the front. Jillian noticed the discrepancy immediately and made mention of the plans we heard the day before to go in through her ribcage.
Dr. Gruber underwent some sort of Fellow Transformation, reserved for only the experts in his field. First he ordered one nurse (or doctor, for that matter - nobody outranked him during those next few moments, no matter their title) to retrieve Aurelia's paperwork. He concisely, but not rudely, discredited the fellow who conferenced with us Sunday by indicating his utter displeasure with our receiving incorrect information. His words to us included, "I'm not sure what that Fellow heard or said, but there clearly was a miscommunication. The plan was never to go in through the side. There was some questioning of what our final decision would be, but I clearly ruled out going in from the side."
After he directed the many staff to clean and re-stamp Aurelia on the front of her chest he called surgery and seemed pleased that everyone in the operating room had been planning to go in through Aurelia's chest. Thankfully the repair to Aurelia's arch, facilitated by that decision to open her chest, went without incident. I have such a hard time trying to imagine my daughter laying on an operating table with her chest open wide and blue from the cold that has shut down all the major systems of her body. I just can't fathom what it looked like to watch her heart slow and slow one beat at a time until it sat silent and still. I cry thinking about her there, her body dead and a machine carrying precious oxygen and blood to her brain and limbs.
The surgical team moved quickly after that, repairing the band and slowly moving Aurelia off bypass. At this point the first of the challenges facing Aurelia (as if all that came before was easy!) manifested itself in the form of excessive bleeding. Throughout any complicated surgery like this many nicks and cuts are made in the body, along veins and organs and muscle and tissue, but very rarely is bleeding seen by the surgical team. A body in Aurelia's state is so cold that you can't see the amount of bleeding until they begin to take her off bypass and warm her up, waking her heart from its slumber.
Aurelia underwent a series of cooling procedures over two and a half hours to slow the excessive bleeding inside her chest cavity. These procedures amounted to literally filling Aurelia with ice, waiting fifteen minutes, warming her up again, checking for bleeding and re-applying ice if needed. Eventually Aurelia's leaks sealed themselves and the doctors made sure that all the vents and lines into her firmly lay in place. At that point Aurelia had a drainage line installed, two pacemaker wires, an IV directly to her chest cavity and heart, another IV in her foot, and an arterial line into her belly button.
We met with Dr. Gruber after the surgery for his recounting of the surgery and he showed enthusiasm and pleasure with Aurelia's progress. Other than her bleeding he felt confident that she would emerge from the procedure with much improved breathing and heart function. Dr. Gruber decided to set the pulmonary artery function at 90% its original and he avoided looking for other potential problems with Aurelia's mitral valve and her existing muscular VSD (the large hole between her left and right ventricle). Jillian and I were happy with the outcome and Dr. Gruber's decision to avoid looking for further problems with Aurelia's valve and hole, because both may improve themselves over time and because the valve may actually not have much of a problem once her heart regains strength.
When we first saw Aurelia we were thrilled. As scary and difficult as it was to look at her I will never forget the joy in my heart at that moment. All that afternoon and evening I felt like running and hugging and kissing everyone I saw, from Dr. Ince to the admitting orderly out by the entrance to the CICU. Jillian felt more than mild embarrassment at my excitement and expression. I don't blame her. It's quite possible that I mortified not only Jillian, but Aurelia, too.
After about one hour the bleeding from Aurelia's chest cavity slowed to barely a trickle and we started to face the second and far worse concern with her surgery, this time revolving around urine. When put on bypass and our temperatures lowered our systems shut down one by one. As we come back to life our body slowly regains heat (Aurelia's temperature still hadn't reached normal two hours after her surgery finished) in controlled increments and the body's systems begin to reboot one by one. We skipped over any trouble with Aurelia's respiratory system by having her on the machine that took care of that process for her, her bleeding in her circulatory system had slowly come under control, her nervous system seemed to be intact, she hadn't suffered any strokes, and brain function appeared normal.
Unfortunately, prior to, during, and after surgery Aurelia hadn't passed any urine through her catheter. In any normal person this wouldn't raise much of a concern, but with only one kidney the chance of system shock and failure meant life or death for our baby girl. Dr. Ince, whose praises I sang before, kept a measured response and reassured Jillian and I that this sort of delay did not mean anything out of the ordinary. Stressed nonetheless we felt increasing tension as the minutes went by and as the staff began discussing their response to a kidney failure. The sheer mention of 'what if' scenarios had me in near panic. All I wanted for her was to pee. I have never, ever, wanted anyone to pee so badly in my life.
She kept us waiting nearly two hours, the cut off point for 'no concern' we later found out, until we saw a few drops in her catheter. I about jumped for joy at the sight of a yellow droplet in her tube. This seems silly, I suppose, but looking at her bruised chest, swollen face and arms, and knowing that all that fluid she had been infused with during surgery had to escape, I think I actually felt more fear than I did when they wheeled her away for the operation earlier that morning.
We stayed late last evening with her and left her happy that she once again faced down tough odds and beat them with courage and tenacity. Though a machine was breathing for her and her chest still bled some, and despite the low urine output, Aurelia inspired strength and hope in us that we needed to fight back the worry and concern we felt all day.
I confess that at points during the day I let my mind drift away to places dark and sad, wondering what it would be like to lose her. We agreed to participate in a genetic study before Aurelia's surgery, permitting the CHOP staff to keep tissue and blood samples from Aurelia's heart permanently. Dr. Gruber and his team will use the sample (amongst many others) to try and identify the genetic cause behind HLHS. It is suspected that the disease is genetic, but much more work needs to be done before a specific cause is identified. I found a minuscule measure of comfort knowing that even if she died, Aurelia's heart and blood could still help someone else at risk of HLHS. I even felt good knowing that if Aurelia's DNA showed anything even remotely useful that Jillian and I could then give our own DNA and blood to support scholarship and research into the defect.
As for today, other than one minor scare, Aurelia continues to do well. I'll give a more detailed post a little later, but I know folks have been waiting for details so I wanted to write this before my memory lost pieces of Aurelia's journey.
Thank you everyone, for all your positive thoughts and prayers and love. Your support has resulted in immeasurable strength needed and used by Jillian and me. We love you.
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