Wednesday, October 13, 2010
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
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
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