WE ARE GOING HOME TODAY!!!!!
After over a month in the hospital there is nothing more I want than to take a shower in my own home, sleep in my own bed, go grocery shopping, make dinner, and relax as a family. Oh it will be glorious.
Caroline is going home on two medications for her heart and medication for reflux. She is known as the baby with the bows, the "unique" A/V canal heart defect, and an amazing eater. She blew away the speech therapist, teacher, pediatricians, nurses, and cardiologists with how well she is eating. Normally cardiac babies have trouble going back to the bottle after surgery. Caroline is chugging it down (between screams due to reflux). We are going to have a chunker on our hands in no time!
While we LOVED the cardiology team at UVA, we hope to never have to see them again. In reality there is a good chance that we will be back for a mitral valve replacement in the future, but we will deal with that if and when we get there.
Today is a wonderful day.
Love,
Megan
Monday, July 23, 2012
Thursday, July 19, 2012
Prep and Recovery
Sorry it has taken me a few days to post. I've had ocular migraines (flashing lights, nausea, migraines, light sensitivity etc.) and felt sick every time I lifted my head let alone looked at a computer. The optometrist said it can be brought on by stress, dehydration, and low blood sugar. Check, Check, and Check. I've spent some time away from the hospital and gotten extra sleep. I'm doing much better now (I hope!).
Quick Update: We've had a few ups and downs but now Caroline is doing great! Yes it is a long post again...I just can't help it!
Also, thank you for the outpouring of support we have received. I haven't had a chance to respond to most of it but it does not go unnoticed! THANK YOU :)
Prepping for Surgery
I didn't have a chance before to share about the days leading up to surgery, so here you go!
Leading up to the surgery Caroline had a chest x-ray, an EKG, and a second echo cardiogram (echo). It was actually a pretty scary time for us. There were a lot of questions about what type of surgery to do, when it would be, and how risky it was.
The doctors were initially confused as to why Caroline was in such bad heart failure (ugh I hate that. My daughter was in heart failure). The bottom part of the hole didn't look very big initially so she should have been doing better. Well upon closer inspection, which included bringing in the head of pediatric cardiology and having him perform the echo, they found the bottom part of the hole (the VSD or ventricular septum defect) was actually quite big and uniquely/unusually shaped. No one wants to hear that going into surgery. They also weren't sure whether it was in a place that they could safely reach in the heart or if there was enough stuff there for them to attach the patch to. It was a hairy couple of days for us as they figured that out.
We also didn't know when surgery would be. We didn't find out until noon the day before that she would have surgery they next day! We didn't believe it until the surgeon came in and did his pre-op discussion with us. That in and of itself is nerve racking. You have to hear about all the things that could go wrong. She could come out still on the heart lung machine. She could still have her chest open if her heart is super swollen. He could not be able to fix something. Scary stuff.
What made it easier for us was Phil and I made some plans before hand. A few days before surgery we left the hospital for awhile and tackled the hard stuff. What if we loose her? What would we do? We were reassured that we still had one another. We had been there before and we could survive it again. We made funeral decisions, cremation/burial decisions, and travel decisions (we were going to go on another trip to Europe. We found that after loosing Emily planning a trip was a good distraction). The decision that helped me come to peace with everything the most was also what took the most strength to verbalize later to the doctors. Without question we knew that if we lost her we wanted her to be an organ donor. If in our pain we could give hope and happiness to another family then it would make loosing Caroline a little bit easier. The doctors actually never asked us about this. Before they took her to the OR we brought it up. It was the last thing we discussed before they wheeled her off. We knew that if she were to die then they would need to take measures to preserve her organs. I would have been mad if we weren't able to help someone simply because we were too scared to mention the possibility of loosing her. We made it clear that we wanted them to do everything in their power to save her but if they couldn't, then we wanted them to preserve her so that she could help others. I kept imagining being a parent who has been told that their infant needs a transplant and how horrible it must feel that in one child's death their child would gain life. I don't want anyone to ever have to loose a child. We know that all too well. The idea of being that hope for another family and taking that pain away from someone else, it filled me with joy. Almost like there would be a purpose to her loss. Obviously we were hoping it wouldn't come to that. It is just what gave us peace as we entered her surgery.
Besides all the anxiety and decision making, we also spent a lot of time playing with Caroline. Phew! We were all worn out!
Recovery
Friday 7/13---Caroline was very swollen on Friday. They said that this day, the second day is when you are the most swollen. You could really see the swelling in her face. When we walked in Friday morning we also found out that they had turned the pacing wires on. They always leave pacing wires on the heart (under the skin directly on the heart) in case they need to use them. Well Caroline needed them used. She was having irregular heartbeats Thursday night that were coming and going and then they stayed longer. So they plugged her into the pacer and turned it on. They said it was because her heart was swollen due to the surgery. Once again, very normal. We weren't worried about it because she came out of surgery with a regular heartbeat. If she continued to need the pacing wires 11 days after surgery then she would have to have a second surgery to put in a permanent pacer. She was on the ventilator still this day.
Saturday 7/14---They were able to turn the pacing wires off! Both Caroline's heart and whole body were much less swollen! Our biggest problem was her high activity level. One of her nurses nicknamed her a "wild child". She was thrashing around a ton! They had her arms tied down slightly because she tried to pull her ventilator out the first night. She could still move her arms, just not enough to get to her tubes. They had to keep her sedated too because of the thrashing. Too much thrashing = more bleeding from her chest tube. It was REALLY hard to see her thrashing those first few days. We were just so worried that all that thrashing was going to cause her harm. She also looked like she was uncomfortable or in pain when she was thrashing. Probably so, I mean she did just have heart surgery. To make it worse, every time she thrashed her monitors started going crazy. When this happened that first night after surgery they brought in the ekg machine to make sure everything was okay. Because of all the thrashing she had to be heavily sedated. While heavily sedated she had to be on the ventilator. They started slowly weaning her off the sedation on Saturday so that she breathed more on her own. She needed to be more awake when they took the ventilator out so that she would want to breathe on her own.
Sunday 7/15---They took her off the ventilator! They changed her to the CPAP (see picture below). This is a step down from the ventilator. She was not as sedated because she needs to be awake in order to breathe. Her cry was very hoarse this day because her throat was swollen after having the ventilator down her throat for a few days. Her arms are no longer tied down :) She was much happier once the ventilator was out. Part way through the day she switched to a high flow nasal cannula (see picture below) which is a step down from the CPAP. She got to eat a very little bit on Sunday. When she came off of the CPAP she was showing some signs of difficulty breathing.
Monday 7/16---When we came in on Monday Caroline was back on the CPAP. We weren't totally surprised. She was having mild chest retractions on Sunday when she was just on the nasal cannula. Caroline's morning chest x-ray (she gets an x-ray EVERY morning) showed some pockets of her lungs had collapsed which is normal after a major surgery like she had. There was also fluid in her lungs which is something we have been battling since surgery. Just another side effect of a major surgery. That in conjunction with the cardiologist's clinical evaluation (looking at Caroline and her stats) made her order an echo to see what was going on. The cardiologist on the floor this week was the cardiologist working with the surgeon last week (they all switch around each week) so she has LOTS of knowledge of Caroline's heart. I mean she saw it up close and personal! She wanted to see what it looked like a few days after surgery compared to how she and the surgeon left it at the end of surgery last week. Caroline's stats, x-ray, and appearance were all saying that something wasn't quite right. The echo showed that due to the collapsed pockets in her lungs her heart was working harder. So much so that the right ventricle (which had previously been doing great!) was having trouble pumping, the tricuspid valve (valve on the right side) was now leaking some (remember no leakage in that valve when she came out of surgery) and the mitral valve (valve on the left side) went from mild+ to moderate leakage. They also noticed a small hole in her ventricular septum (bottom part of the wall separating the left and right of the heart.) This was very scary to hear. It felt as if they were saying that our child's heart was failing...which was NOT the case. Her heart was just not ready/strong enough to pump without some assistance. They gave her medicine to help her heart pump, upped her medicine that makes her pee to get the fluid off her lungs, and changed back to the CPAP with the chance of going back on the ventilator. The CPAP was supposed to help 'pop' open the collapsed portions of her lungs. The hope was that doing all this would take some of the work off of her heart and the symptoms we saw on the echo would decrease.
Tuesday 7/17---Caroline is a peeing machine! She was on CPAP all day on Tuesday. We saw a big change this day in Caroline. She was breathing better and peeing all that extra fluid off. It was great! They took out her chest tube and the pacing wires on her heart this day!
Wednesday 7/18---Caroline is just on a nasal cannula! Almost just on room air and breathing comfortably! By evening on this day Caroline had peed so much that her eyes were sunken in and part of her skull (the fontanel) was sunken in. Basically she was dehydrated from all the peeing she was doing. They decreased her peeing medicine and upped her fluids. She started looking a bit better by late that evening.
Thursday 7/19---Her chest x-ray looks good. Not too much fluid on her lungs and not very many areas of her lungs that are still collapsed. I'm hoping that we can try a bottle today too. She has been getting fed through an NG tube the past couple of days. She is probably staying in the PICU today as we continue to figure out her fluid levels. Maybe we will go to the regular pediatrics unit by the weekend??? Who knows.
We have learned that with all this you kinda go one step forward, two steps back. This was not just some simple surgery she had. It is a balance game we are playing. How much medicine does she need versus weaning her off of it. If you get upset about one day, one event, you go crazy. You just have to take each day as it comes. I'm not going to update the blog every day about every little up and down. You have to look at things over multiple days, not just one x-ray or blood draw. We've actually had multiple cardiologists and the surgeon admit since the surgery that they were nervous going into the OR. Great. At least she is doing better than they expected.
We still don't know the long term prognosis of her heart. She hasn't had another echo to know if she is doing better. She will have another echo in a few days. The doctors think her heart isn't working as hard because she is showing no symptoms (unlike Monday when she was showing tons of symptoms). We are hopeful that she has gone back to what is was like coming out of surgery. The reality is that there is a high chance she will have to have a mitral valve replacement in the future. It was just so abnormally shaped and small that it may not hold up well long term. That would be years from now though (hopefully!). People live with leaky valves all the time. It doesn't matter how much her valves are leaking but how the leakiness affects her. Right now if they are leaking she is doing great!
Phil and I are doing well. We have taken the past couple of days to relax and get out of the hospital a bit. On Friday we went to two wineries that we like here in Charlottesville. On Saturday we took our parents to the Downtown Mall and had Christian's Pizza (if you went to UVA then you know how awesome their pizza is). We've gone out to a couple of nice dinners too. It has been good to get out, relax, and let the doctors and nurses do their job. Once Caroline is back on the regular pediatric unit I will be sleeping at the hospital again.
Wow I just realized...we are one week post-op! Wahoo!
Love,
Megan
Quick Update: We've had a few ups and downs but now Caroline is doing great! Yes it is a long post again...I just can't help it!
Also, thank you for the outpouring of support we have received. I haven't had a chance to respond to most of it but it does not go unnoticed! THANK YOU :)
Prepping for Surgery
I didn't have a chance before to share about the days leading up to surgery, so here you go!
Leading up to the surgery Caroline had a chest x-ray, an EKG, and a second echo cardiogram (echo). It was actually a pretty scary time for us. There were a lot of questions about what type of surgery to do, when it would be, and how risky it was.
The doctors were initially confused as to why Caroline was in such bad heart failure (ugh I hate that. My daughter was in heart failure). The bottom part of the hole didn't look very big initially so she should have been doing better. Well upon closer inspection, which included bringing in the head of pediatric cardiology and having him perform the echo, they found the bottom part of the hole (the VSD or ventricular septum defect) was actually quite big and uniquely/unusually shaped. No one wants to hear that going into surgery. They also weren't sure whether it was in a place that they could safely reach in the heart or if there was enough stuff there for them to attach the patch to. It was a hairy couple of days for us as they figured that out.
We also didn't know when surgery would be. We didn't find out until noon the day before that she would have surgery they next day! We didn't believe it until the surgeon came in and did his pre-op discussion with us. That in and of itself is nerve racking. You have to hear about all the things that could go wrong. She could come out still on the heart lung machine. She could still have her chest open if her heart is super swollen. He could not be able to fix something. Scary stuff.
What made it easier for us was Phil and I made some plans before hand. A few days before surgery we left the hospital for awhile and tackled the hard stuff. What if we loose her? What would we do? We were reassured that we still had one another. We had been there before and we could survive it again. We made funeral decisions, cremation/burial decisions, and travel decisions (we were going to go on another trip to Europe. We found that after loosing Emily planning a trip was a good distraction). The decision that helped me come to peace with everything the most was also what took the most strength to verbalize later to the doctors. Without question we knew that if we lost her we wanted her to be an organ donor. If in our pain we could give hope and happiness to another family then it would make loosing Caroline a little bit easier. The doctors actually never asked us about this. Before they took her to the OR we brought it up. It was the last thing we discussed before they wheeled her off. We knew that if she were to die then they would need to take measures to preserve her organs. I would have been mad if we weren't able to help someone simply because we were too scared to mention the possibility of loosing her. We made it clear that we wanted them to do everything in their power to save her but if they couldn't, then we wanted them to preserve her so that she could help others. I kept imagining being a parent who has been told that their infant needs a transplant and how horrible it must feel that in one child's death their child would gain life. I don't want anyone to ever have to loose a child. We know that all too well. The idea of being that hope for another family and taking that pain away from someone else, it filled me with joy. Almost like there would be a purpose to her loss. Obviously we were hoping it wouldn't come to that. It is just what gave us peace as we entered her surgery.
Besides all the anxiety and decision making, we also spent a lot of time playing with Caroline. Phew! We were all worn out!
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| Look who fell asleep like this on ReRa's lap! |
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| All snuggled up with her new favorite toy, the kitty/blanket |
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| Mommy where are your glasses? |
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| Fell asleep playing |
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| I love getting extra ECHO Cardiograms! Look I'm even helping! |
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| Miss Chelsea my teacher is helping me lay on my side and play with toys. Mommy and daddy have learned so much already from miss Chelsea! |
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| A visiting dog or a small horse? |
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| Chaplain Jason |
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| It's okay Mommy. Surgery will go great tomorrow! |
Recovery
Friday 7/13---Caroline was very swollen on Friday. They said that this day, the second day is when you are the most swollen. You could really see the swelling in her face. When we walked in Friday morning we also found out that they had turned the pacing wires on. They always leave pacing wires on the heart (under the skin directly on the heart) in case they need to use them. Well Caroline needed them used. She was having irregular heartbeats Thursday night that were coming and going and then they stayed longer. So they plugged her into the pacer and turned it on. They said it was because her heart was swollen due to the surgery. Once again, very normal. We weren't worried about it because she came out of surgery with a regular heartbeat. If she continued to need the pacing wires 11 days after surgery then she would have to have a second surgery to put in a permanent pacer. She was on the ventilator still this day.
Saturday 7/14---They were able to turn the pacing wires off! Both Caroline's heart and whole body were much less swollen! Our biggest problem was her high activity level. One of her nurses nicknamed her a "wild child". She was thrashing around a ton! They had her arms tied down slightly because she tried to pull her ventilator out the first night. She could still move her arms, just not enough to get to her tubes. They had to keep her sedated too because of the thrashing. Too much thrashing = more bleeding from her chest tube. It was REALLY hard to see her thrashing those first few days. We were just so worried that all that thrashing was going to cause her harm. She also looked like she was uncomfortable or in pain when she was thrashing. Probably so, I mean she did just have heart surgery. To make it worse, every time she thrashed her monitors started going crazy. When this happened that first night after surgery they brought in the ekg machine to make sure everything was okay. Because of all the thrashing she had to be heavily sedated. While heavily sedated she had to be on the ventilator. They started slowly weaning her off the sedation on Saturday so that she breathed more on her own. She needed to be more awake when they took the ventilator out so that she would want to breathe on her own.
Sunday 7/15---They took her off the ventilator! They changed her to the CPAP (see picture below). This is a step down from the ventilator. She was not as sedated because she needs to be awake in order to breathe. Her cry was very hoarse this day because her throat was swollen after having the ventilator down her throat for a few days. Her arms are no longer tied down :) She was much happier once the ventilator was out. Part way through the day she switched to a high flow nasal cannula (see picture below) which is a step down from the CPAP. She got to eat a very little bit on Sunday. When she came off of the CPAP she was showing some signs of difficulty breathing.
Monday 7/16---When we came in on Monday Caroline was back on the CPAP. We weren't totally surprised. She was having mild chest retractions on Sunday when she was just on the nasal cannula. Caroline's morning chest x-ray (she gets an x-ray EVERY morning) showed some pockets of her lungs had collapsed which is normal after a major surgery like she had. There was also fluid in her lungs which is something we have been battling since surgery. Just another side effect of a major surgery. That in conjunction with the cardiologist's clinical evaluation (looking at Caroline and her stats) made her order an echo to see what was going on. The cardiologist on the floor this week was the cardiologist working with the surgeon last week (they all switch around each week) so she has LOTS of knowledge of Caroline's heart. I mean she saw it up close and personal! She wanted to see what it looked like a few days after surgery compared to how she and the surgeon left it at the end of surgery last week. Caroline's stats, x-ray, and appearance were all saying that something wasn't quite right. The echo showed that due to the collapsed pockets in her lungs her heart was working harder. So much so that the right ventricle (which had previously been doing great!) was having trouble pumping, the tricuspid valve (valve on the right side) was now leaking some (remember no leakage in that valve when she came out of surgery) and the mitral valve (valve on the left side) went from mild+ to moderate leakage. They also noticed a small hole in her ventricular septum (bottom part of the wall separating the left and right of the heart.) This was very scary to hear. It felt as if they were saying that our child's heart was failing...which was NOT the case. Her heart was just not ready/strong enough to pump without some assistance. They gave her medicine to help her heart pump, upped her medicine that makes her pee to get the fluid off her lungs, and changed back to the CPAP with the chance of going back on the ventilator. The CPAP was supposed to help 'pop' open the collapsed portions of her lungs. The hope was that doing all this would take some of the work off of her heart and the symptoms we saw on the echo would decrease.
Tuesday 7/17---Caroline is a peeing machine! She was on CPAP all day on Tuesday. We saw a big change this day in Caroline. She was breathing better and peeing all that extra fluid off. It was great! They took out her chest tube and the pacing wires on her heart this day!
Wednesday 7/18---Caroline is just on a nasal cannula! Almost just on room air and breathing comfortably! By evening on this day Caroline had peed so much that her eyes were sunken in and part of her skull (the fontanel) was sunken in. Basically she was dehydrated from all the peeing she was doing. They decreased her peeing medicine and upped her fluids. She started looking a bit better by late that evening.
Thursday 7/19---Her chest x-ray looks good. Not too much fluid on her lungs and not very many areas of her lungs that are still collapsed. I'm hoping that we can try a bottle today too. She has been getting fed through an NG tube the past couple of days. She is probably staying in the PICU today as we continue to figure out her fluid levels. Maybe we will go to the regular pediatrics unit by the weekend??? Who knows.
We have learned that with all this you kinda go one step forward, two steps back. This was not just some simple surgery she had. It is a balance game we are playing. How much medicine does she need versus weaning her off of it. If you get upset about one day, one event, you go crazy. You just have to take each day as it comes. I'm not going to update the blog every day about every little up and down. You have to look at things over multiple days, not just one x-ray or blood draw. We've actually had multiple cardiologists and the surgeon admit since the surgery that they were nervous going into the OR. Great. At least she is doing better than they expected.
We still don't know the long term prognosis of her heart. She hasn't had another echo to know if she is doing better. She will have another echo in a few days. The doctors think her heart isn't working as hard because she is showing no symptoms (unlike Monday when she was showing tons of symptoms). We are hopeful that she has gone back to what is was like coming out of surgery. The reality is that there is a high chance she will have to have a mitral valve replacement in the future. It was just so abnormally shaped and small that it may not hold up well long term. That would be years from now though (hopefully!). People live with leaky valves all the time. It doesn't matter how much her valves are leaking but how the leakiness affects her. Right now if they are leaking she is doing great!
Phil and I are doing well. We have taken the past couple of days to relax and get out of the hospital a bit. On Friday we went to two wineries that we like here in Charlottesville. On Saturday we took our parents to the Downtown Mall and had Christian's Pizza (if you went to UVA then you know how awesome their pizza is). We've gone out to a couple of nice dinners too. It has been good to get out, relax, and let the doctors and nurses do their job. Once Caroline is back on the regular pediatric unit I will be sleeping at the hospital again.
Wow I just realized...we are one week post-op! Wahoo!
Love,
Megan
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| Ventilator and swollen |
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| Still on the ventilator and swollen |
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| CPAP |
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| Stuff from home Zach, Goodnight book, Harry Potter, basket of blankets |
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| Not feeling good on Monday on just a nasal canula. She went back on CPAP after this |
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| Hello baby girl! Breathing great on just a nasal canula on Tuesday! |
Wednesday, July 11, 2012
Game Time (Updated 7/12 @ 5:10pm)
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| Sound asleep, resting up the night before surgery. |
Caroline will have open heart surgery to repair her complete A/V canal heart defect on Thursday, July 12, 2012. She goes in around 7am. We will see her sometime in the afternoon. We are supposed to get phone call updates throughout the surgery. I am going to attempt to keep updating this post as we hear updates. If I have time after surgery I will post about the lead up to surgery, because it has been a whirlwind!
Please take a moment to pray for our beautiful little girl. We know that everything is going to be okay because she is in God's loving hands (well that's what we keep reminding ourselves).
7/11 @ 10:00 pm---surgery is tomorrow morning. Phil and I are spending the night at the hospital with Caroline because we will have an early start to the morning. As I type this Phil has Caroline in his arms and is dancing with her. It is one of hundreds of moments that I hope to never forget.
7/12 @ 5:45 am---We left Caroline's room and took her to the pre-op room. She slept the whole walk down.
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| Nurse Donny |
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| anesthesiologists |
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| Team Caroline |
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| The cute otter in our room. Did you know that otters create a whirlpool in the water to bring fish to the surface? You learn new things every day! |
7/12 @ 7:30 am---Caroline left with the anesthesiologists for the operation room. She slept most of the time we waited though she did wake up long enough to give us a few of her amazing smiles. She was back to sleeping peacefully as the anesthesiologist walked her bed down the hall away from us.
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| Bye Caroline! We love you! |
7/12 @ 9:05 am---first incision made
7/12 @ 9:10 am ---we got our first update from our OR nurse Donny. He said that Caroline was doing great, went to sleep peacefully, and had all her IVs and lines put in successfully. We were told she was having an internal echo (probe that goes down her esophagus to get more pictures of the heart before the main stuff starts) being done at that moment. He said that she would be putting her on the heart and lung machine about 30 minutes later. So that would be around 9:40 that she was put on the heart and lung machine. We are supposed to get updates every two hours. Since leaving her at 7:30 we cleaned all our stuff out of her room since we will now be in the PICU. Then we went to the Cafeteria and had breakfast together. Now we are sitting outside in the courtyard hanging out.
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| Art in the courtyard |
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| Beautiful day outside! We have too much technology in this family! Hahahaha I promise that we are actually talking and hanging out. We aren't just staring at our computers. |
7/12 @ 11:05---Got another call from Donny! Surgery is underway. She is on the heart and lung machine. She is doing great and Dr. Gangemi is working on repairing her heart. He will be working for a few more hours. The echo down her esophagus confirmed everything they already knew. Wahoo! Hopefully he isn't getting any surprises now that he is in her heart. Should get another update from our new best friend Donny in a few hours.
7/12 @ 1:31---Hello Donny! The major part of the surgery is done! She is off the heart lung machine! Donny said it went well. They are working on making sure everything is working as it should. They still need to close her up. Our next update will be from the surgeon himself. We will find out if he thinks she will need future surgeries at that time and what exactly he was able to do. It won't be for a few more hours. Then we will have to wait another hour to see Caroline. Our surgeon's nurse practitioner has Caroline's giant pink bow in her pocket to put on her when she gets up to the PICU. Bows make everything better :)
7/12 @ 2:15pm---Just met with her surgeon. EVERYTHING WENT GREAT!!!!!! He was able to repair the hole even though it was "unusual"/"unique" in shape (We actually had an extra echo to look more in depth at this this past week). He was able to split her common valve into the two valves she is supposed to have (tricuspid and mitral). Her tricuspid valve has NO leakage (valve between the top and bottom chambers on the right side of her heart) ! Her mitral valve (valve between the top and bottom chambers on the left side of her heart) has mild+ leakage which is very normal! We will have to keep an eye on it as she grows but we knew that going into the surgery. Her lungs are doing well with the new smaller amount of blood flow. She has a regular heart beat and not an irregular heartbeat (this could have been a side effect from the surgery which would have required a second surgery to put in a pace maker). We saw her from afar as she got wheeled into the PICU. We will get to go into the PICU in less than an hour to see her! We just sat there in disbelief as he told us that we were basically in the best case scenario possible. Now we just need recovery to go well. Wow. My daughter just had open heart surgery. My daughter is no longer in congestive heart failure. All I can seem to do is smile and thank God for our amazing little blessing, Caroline.
7/12 @ 3:30---Phil and I just got to go see Caroline. She looks amazing!!! They warned us that she would look pale...she looks just as pale as she always had to us ;) Tonight is an important and busy night. Caroline is in a special room for cardiac babies that holds three children. This means I can no longer stay at the hospital with her. It is probably a good thing. I can get a good night sleep at the Ronald McDonald House where we are staying. Phil and I are allowed to come and go as much as we please. We can bring visitors in 1 or 2 at a time (aka our parents). Oh she looks sooooo good. We are so happy right now! Below are some pictures of her!
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| She has her head on a little gel pillow. She has a ventilator in her nose, a line through her neck to her heart, pace maker wires sitting on her heart (under the skin. these are just precautionary), a drain, a catheter, a line in her arm, a line in her leg, and lots of monitoring devices. |
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| Look at all those monitors! |
That is it for tonight folks! We are all probably going to stay out of their way and go out to eat at our favorite restaurant in Charlottesville, Vivace. Honestly it is super hard being in there with her right now. Monitors keep going off and they keep discussing every little fluctuation. It is hard to see that and not get stressed. I'm happy she is being SO closely monitored, I just can't handle being in there right now. They said the FIRST THREE DAYS are the most important part of her recovery. We need prayers to continue that recovery goes smoothly.
Thank you for the outpouring of love and support that ya'll have shown us. It means the world to us. We feel so blessed to have such an amazing support system. We feel blessed to have amazing doctors. We feel so blessed to have an amazing little girl.
Love,
Megan
Saturday, July 7, 2012
Road Trip!
Quick Update: Surgery is Thursday, July 12. Her surgery date could be changed if an emergency case comes in between now and then.
Well we had a successful road trip to UVA! We traveled on Thursday (7/5) by medical transport (ie ambulance) from St. Mary's Hospital in Richmond, VA to the University of Virginia Children's Hospital in Charlottesville, VA. It was an uneventful trip which is a good thing. Caroline was put into an incubator for the transport. We didn't know how she would handle it but she slept the whole time! I sat up front with the driver and Phil drove our car.
It was a bit of a rough transition once we got here. We were used to our WONDERFUL doctors and nurses at St. Mary's. St. Mary's is A LOT smaller than UVA. It felt like family there and now we feel a bit lost in the largeness. We had a few issues with her bed not being ready, taking over an hour to get her formula, and not being able to find a pump for her night feed (they eventually found one). Then yesterday she spit-up four times, poop shot out the side of her diaper and got on her clothes multiple times, and oh yeah my car broke down while I was out getting us dinner. When the car wouldn't start I just sat there on the verge of tears talking to myself and saying seriously God? Now my car?
Today was a much better day. We are feeling more comfortable here and getting used to our new routine. We were also able to get my car to start and get a new battery. Thank goodness!
One of the biggest differences between here and St. Mary's is that we now have a roommate. They only put "clean" babies in the same rooms so we shouldn't have to worry about Caroline catching something from him. He is very cute and seems to be a few months older than Caroline. We aren't sure. The doctors obviously aren't allowed to tell us anything about him and his parents haven't been by to see him since we got here Thursday morning. It is kinda awkward when he cries because your instinct is to pick him up and console him or give him his pacifier but that isn't our place to do that. We go over and talk to him throughout the day and the nurses and staff come by and play with him or take him on walks.
One of the cool things here is that they have educators on staff. So Caroline has a teacher who comes by to play with her! She is also going to have a Physical Therapist come by and play with her too. Phil and I are looking forward to learning from her teacher and the PT. At St. Mary's the PT and OT taught us some baby massage which Caroline loves. Baby massage will be especially good after surgery.
We like the pediatricians who have checked on Caroline and her cardiology team. They are very caring and calm about everything. One of the cool things is that we are included in rounds each day. Every day our team (pediatricians, cardiologists, nurse, and various medical students, residents, and fellows) stand in a circle outside our room and discuss Caroline. Phil, Caroline, and I join them too! It is nice to hear them recount everything. This is also where you see that this is a teaching hospital. One of the new residents or fellows is in charge of reporting on Caroline so they get asked lots of questions by the more experienced members of the team. We also contribute to the meeting by asking and answering questions. It feels very 'Scrubs' like without the mean comments from Dr. Cox or Dr. Kelso.
So far Caroline has had an echo cardiogram of her heart and an ultrasound of her tummy. They wanted to have their own look at her heart as they prepare her for surgery and they did an ultrasound of her tummy to make sure there wasn't anything going on there that had been missed. Her diagnosis of a complete A/V canal heart defect was confirmed. The ultrasound found that there is NOTHING wrong with the rest of her organs, thank goodness! Next week the geneticist will stop by to chat with us to make sure they aren't missing any genetic components (her genetic screening at birth said she had no abnormalities so hopefully this geneticist will say the same thing). We will also be discussing all sorts of pre-op information. Right now her surgery is scheduled for THURSDAY, JULY 12th. This could change if an emergency case comes in.
All in all we are happy to be one step closer to surgery. It is nice being back at our alma mater though definitely a different experience.
Thank you to the St. Mary's staff. They were amazing! One of our pediatricians even called us the first night here at UVA to check on us! We feel so blessed to have had such an amazing group of nurses and doctors taking care of Caroline there.
Fourth of July
My dad came and visited us before the fourth in Richmond and after the fourth in Charlottesville. It was a great surprise! He spent the actual Fourth with some of my family in Yorktown. My cousin Chris is in charge of the Yorktown, VA fireworks and dad always helps out.
Phil's parents and aunt and uncle surprised us on the Fourth. We are normally at the beach with them so they brought the beach to us! They brought us crabs and bacon. If you have ever been lucky enough to eat Jeanne breakfast (breakfast made by Phil's grandmother) then you know that NO ONE in the world cooks bacon like she does. You can try all you want but it just won't be the same. Thank you for bringing the beach to us! It meant soooo much to us!
Visitors
In addition to my dad, Phil's parents, and Phil's aunt and uncle, we have also had a few friends stop by to visit! Phil and I went out to eat with my aunt and cousin last weekend. My college roommate Megan came all the way from England to see us! Two of my friends from college came to visit us at UVA once we got here. It was great to see them all! Trevor and Jackie, I forgot to take pictures of you with Caroline! Next time :)
While at St. Mary's we also had some of Emily's nurses stop by. Nurse Heather and Laura (who I also forgot to take pictures of! Booo) came to say hi which was great! They were a wonderful support while we were at the hospital with Emily. They helped make everything perfect from our memory box to how we were going to say good-bye. Nurse Amy was our very special nurse who took care of me and who delivered Emily also stopped by. It was so great to see her too! My ob/gyn Dr. Tyson also came by. It meant so much to have her come check on Caroline too. We have been so blessed to have such amazing doctors and nurses these past couple of years!
Adorableness
We may be kinda biased but we think we have the most adorable baby in the world :)
Phil and I are doing well as we head into the surgery. We are just trying to enjoy every minute we have with her. We are just truckin' along and trying to have faith.
Please take a moment to pray for baby Gavin. Gavin is the son of a friend from High School and he has a more involved heart defect than Caroline. Gavin is one tough cookie and has two amazingly strong parents and an adorable older brother. They have had a tough week and could use some extra happy thoughts and prayers.
Love,
Megan
PS You may have noticed that her feeding tube switched nostrils. We had to switch it on Tuesday because her cheek was getting some sores on it from the first one. The sores are all healed now. Hopefully after the surgery we will be all done with feeding tubes.
Well we had a successful road trip to UVA! We traveled on Thursday (7/5) by medical transport (ie ambulance) from St. Mary's Hospital in Richmond, VA to the University of Virginia Children's Hospital in Charlottesville, VA. It was an uneventful trip which is a good thing. Caroline was put into an incubator for the transport. We didn't know how she would handle it but she slept the whole time! I sat up front with the driver and Phil drove our car.
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| funny face and funny hair |
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| Ready to go! Don't I look cute in my UVA dress? |
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| Thank you transport team! |
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| All buckled up in the incubator. |
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| Hi Mommy! I'm all warm and happy :) |
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| Into the ambulance we go! |
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| We made it to UVA! |
Today was a much better day. We are feeling more comfortable here and getting used to our new routine. We were also able to get my car to start and get a new battery. Thank goodness!
One of the biggest differences between here and St. Mary's is that we now have a roommate. They only put "clean" babies in the same rooms so we shouldn't have to worry about Caroline catching something from him. He is very cute and seems to be a few months older than Caroline. We aren't sure. The doctors obviously aren't allowed to tell us anything about him and his parents haven't been by to see him since we got here Thursday morning. It is kinda awkward when he cries because your instinct is to pick him up and console him or give him his pacifier but that isn't our place to do that. We go over and talk to him throughout the day and the nurses and staff come by and play with him or take him on walks.
One of the cool things here is that they have educators on staff. So Caroline has a teacher who comes by to play with her! She is also going to have a Physical Therapist come by and play with her too. Phil and I are looking forward to learning from her teacher and the PT. At St. Mary's the PT and OT taught us some baby massage which Caroline loves. Baby massage will be especially good after surgery.
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| Relaxing massage from Mommy. |
So far Caroline has had an echo cardiogram of her heart and an ultrasound of her tummy. They wanted to have their own look at her heart as they prepare her for surgery and they did an ultrasound of her tummy to make sure there wasn't anything going on there that had been missed. Her diagnosis of a complete A/V canal heart defect was confirmed. The ultrasound found that there is NOTHING wrong with the rest of her organs, thank goodness! Next week the geneticist will stop by to chat with us to make sure they aren't missing any genetic components (her genetic screening at birth said she had no abnormalities so hopefully this geneticist will say the same thing). We will also be discussing all sorts of pre-op information. Right now her surgery is scheduled for THURSDAY, JULY 12th. This could change if an emergency case comes in.
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| Caroline spent most of her echo looking at the screen and trying to learn from the cardiologist. Hmmmmm maybe a career in medicine is in her future? |
Thank you to the St. Mary's staff. They were amazing! One of our pediatricians even called us the first night here at UVA to check on us! We feel so blessed to have had such an amazing group of nurses and doctors taking care of Caroline there.
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| Mommy and Grandma Karen had a couple of great conversations with one of the chaplins at St. Mary's. |
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| Two of our medical students, John and Benji. They will actually get to see Caroline post-op too because they will be back at UVA then. |
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| Nurse Michelle |
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| Nurse Jena |
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| Nurse Rebecca Congrats Nurse Rebecca on the birth of your daughter! |
Fourth of July
My dad came and visited us before the fourth in Richmond and after the fourth in Charlottesville. It was a great surprise! He spent the actual Fourth with some of my family in Yorktown. My cousin Chris is in charge of the Yorktown, VA fireworks and dad always helps out.
Phil's parents and aunt and uncle surprised us on the Fourth. We are normally at the beach with them so they brought the beach to us! They brought us crabs and bacon. If you have ever been lucky enough to eat Jeanne breakfast (breakfast made by Phil's grandmother) then you know that NO ONE in the world cooks bacon like she does. You can try all you want but it just won't be the same. Thank you for bringing the beach to us! It meant soooo much to us!
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| yuuuuummmm |
Visitors
In addition to my dad, Phil's parents, and Phil's aunt and uncle, we have also had a few friends stop by to visit! Phil and I went out to eat with my aunt and cousin last weekend. My college roommate Megan came all the way from England to see us! Two of my friends from college came to visit us at UVA once we got here. It was great to see them all! Trevor and Jackie, I forgot to take pictures of you with Caroline! Next time :)
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| Caroline was smiling up a storm at Miss Megan! |
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| Nurse Amy :) |
We may be kinda biased but we think we have the most adorable baby in the world :)
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| I love this photo. |
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| Best Hairdo Ever. I can't stop laughing when I look at this picture. How does a 14 week old have this much hair??? |
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| hahahaha |
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| Mommy got tired of dressing me today because I pooped and spit-up on so many things. Thus, naked time! |
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| Snuggling with the blankie. |
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| Got your nose Daddy! |
Please take a moment to pray for baby Gavin. Gavin is the son of a friend from High School and he has a more involved heart defect than Caroline. Gavin is one tough cookie and has two amazingly strong parents and an adorable older brother. They have had a tough week and could use some extra happy thoughts and prayers.
Love,
Megan
PS You may have noticed that her feeding tube switched nostrils. We had to switch it on Tuesday because her cheek was getting some sores on it from the first one. The sores are all healed now. Hopefully after the surgery we will be all done with feeding tubes.
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