This has become my new mantra. Watch and wait. We seem to do a lot of both when it comes to our little girl. As we have said in recent posts, it is ironic that Aurelia's heart is not the issue that continues to keep her in the hospital. The problem lately has been her breathing and I was really looking forward to getting some answers.
Yesterday Aurelia went for a test where they took a bunch of pictures while she breathed (at Flouroscopy). They were looking at her vocal cords and trying to determine whether or not her breathing difficulties stemmed from the paralysis. Today I found out the results. She does, in fact, have tracheomalacia, which was the original suspicion. I had been told that the Ear, Nose and Throat folks did not believe that it was tracheomalacia and that they thought that all of her breathing difficulites were due to the vocal cord paralysis (or really, paresis, since they believe that the paralysis is temporary), which was why she went to Flouroscopy for the non-invasive test (rather than to the OR for a bronch, which could have involved intubation).
When Roxanne, the CICU Attending this week, broke the news to me, I could have cried. Our chief cardiologist, Dr. Svwast stopped by earlier this week and gently told me that if it turned out to be tracheomalacia, Aurelia could be facing a tracheostomy and an additional 2 months in the hospital, just to get her breathing figured out (not to mention more time to deal with feeding issues and whatever else cropped up in the meantime). So, when I heard that she did have it, I was ready to cry. Luckily, Roxanne told me that while a trach was a possibility, it was not being recommended at this time. I could still come to it, but the course of treatment right now is to watch and wait. Hopefully, Aurelia's trachea will grow stronger as she puts on weight and develops further. That could very well happen and we may never have to deal with the issue of a tracheostomy. If she does require one, she could have it for a couple of months to a year. Either way, with or without the trach, the idea is to have her trachea grow and develop. It will happen, but whether or not she needs assistance is the question. Only time will tell, which is why we continue to watch and wait.
I am happy to say that her "NEC Watch" is just about over. They decided to go with 7 days, instead of 10 and she has yet to exhibit any physical symptoms. She should be getting a new NJ feeding tube placed tonight and they will start her on very small feeds tomorrow. As long as everything looks good, they will increase her feeds bit by bit each day. Once she is back up to her normal amount of feeds, they will proceed with the swallow study (which she was supposed to have last Thursday, when the NEC was first suspected) to determine whether or not she has reflux. At that point, a decision about the type of feeding tube will be made. I have strong suspicions that she is going to need the "button" or G-tube. I met a couple of 2-year old boys at the Ronald McDonald House tonight who have buttons and I was pleased to see that they were happy and very busy kids! The fact that they need to be fed through a G-tube didn't seem to faze either one of them.
So we continue to watch and wait. Aurelia was originally sent back to the CICU to determine the reasons for her breathing difficulties. Since that has happened, it is likely that she will be sent back to the CCU (the step-down unit) again tomorrow. I have mixed emotions about it. The step-down unit is one step closer to going home. I love the doctors there (in fact, I ran into one of the fellows, Dr. Janson today and we had a good chat about Aurelia's current status. It was nice because I ran into him outside of the unit and he still recognized me, remembered all of the specifics about Aurelia's case, and took the time to talk to me), so it will be good to be under their care again. The only thing that makes me apprehensive is that in the CICU, there are nurses always present. Always in the pod. And while I know that we can reach a nurse at a moment's notice in the CCU, there is not as much attention or presence as in the CICU, which makes me a bit nervous. I trust the docs though, so if they think that the CCU will be the better place for Aurelia and her care, then that's where we'll go. Until then, we watch and wait.
Wednesday, November 3, 2010
Monday, November 1, 2010
Simmer down now!
It's been an interesting weekend. After Jillian's father arrived in the wee hours of Saturday morning, unexpectedly, Jillian and I hoped for a nice quiet weekend. For the most part we got what we wanted, but there are a number of unanswered questions as our sixth week begins.
Aurelia's heart continues to do well. We smile some at the irony of our stay here as her heart is doing so wonderfully that our discharge could have been weeks ago! To date there are no problems with her urinary tract and the VCUG she underwent showed no back-flush into her dead kidney at all. We are still too far out to do anything about her cleft palette and the latest brain ultrasound showed that her clot is still resolving itself and shrinking every day. These are very good things!
Her genetic evaluations have come back with nothing significant that requires any immediate therapy (if any at all) and Occupational Therapy liked her status as of last Thursday (we won't see them for some time). The Peanut's weight continues to increase and even though feeding has been a disaster she's still holding her own with only a potassium supplement to her daily nutritional fluids.
The PICC line is stable and uninfected, her peripheral line is still functioning and not painful, and the latest cardiac data on the pressures in each ventricle is good, as is the ability of her mitral valve to hold its own. The pulmonary band continues to be effective and the aortic arch reconstruction has not been rejected in any way. In fact, all of that surgery has been a success.
The treatment for her NEC has been bumped to ten days from seven, but that isn't necessarily a bad thing; her daily films show no advance of the infection, but they also do not show it lessening. Even if we *do* get the OK to start feeds again in ten days we probably won't until this airway business is completely sorted out.
The current issue on the table is Aurelia's upper and lower airway. She has had three airway collapses since she's made the move back to the CICU last Friday. She generally has one every twelve hours and only when she becomes particularly worked up. This usually follows a diaper change or a bout of hunger pain. Only one of these episodes, other than the very first which got us back into the CICU, required any kind of sedative to calm her and restore breathing function. The typical pattern for these collapses is a progressive desaturation of oxygen in her blood when she's having a fit. Then we'll see a sudden drop in her saturation levels as her airway (described as 'floppy') is unable to remain open. At this point they will slap the oxygen mask on her and pump her with anywhere between 2 to 4 liters of room air to push the airway open. They will then slowly ween her from the room air over the next few hours and she will be fine.
In the intervening time the staff suctions her nose and mouth for secretions every one to two hours. Because of her severe acid reflux (which is still being medically treated) and because they have a sump running into her stomach to keep everything out of her intestines, and because of her cleft palette, our daughter produces far more secretions in her mouth and esophagus than normal. This goop is usually withdrawn via a tube inserted through the nose into the back of the throat, or directly into the mouth and down the throat into the upper airway.
Dr. Naim is our attending again (yay!) and she'll be setting up a time for Ear/Nose/Throat to examine Aurelia's airway sometime this week. They will (or maybe not) intubate her - something that is not good for her vocal cord paresis or future eating ability - depending on how far down they have to examine her airway. Treatment can be anything from C-Pap, respirators, to temporary or lifetime tracheotomy. If we do have to go with either of the last two issues we will be here for another two months or so, give or take. Feeding at that point will be done via g-tube. This test coming up is a bit more invasive so it counts as yet another surgical procedure down in the operating room.
So that's where we are. My superintendent let me be absent from a professional development day today so that I could be here for rounds and the E/N/T consult/evaluation. We'll do our best to keep people updated.
Aurelia's heart continues to do well. We smile some at the irony of our stay here as her heart is doing so wonderfully that our discharge could have been weeks ago! To date there are no problems with her urinary tract and the VCUG she underwent showed no back-flush into her dead kidney at all. We are still too far out to do anything about her cleft palette and the latest brain ultrasound showed that her clot is still resolving itself and shrinking every day. These are very good things!
Her genetic evaluations have come back with nothing significant that requires any immediate therapy (if any at all) and Occupational Therapy liked her status as of last Thursday (we won't see them for some time). The Peanut's weight continues to increase and even though feeding has been a disaster she's still holding her own with only a potassium supplement to her daily nutritional fluids.
The PICC line is stable and uninfected, her peripheral line is still functioning and not painful, and the latest cardiac data on the pressures in each ventricle is good, as is the ability of her mitral valve to hold its own. The pulmonary band continues to be effective and the aortic arch reconstruction has not been rejected in any way. In fact, all of that surgery has been a success.
The treatment for her NEC has been bumped to ten days from seven, but that isn't necessarily a bad thing; her daily films show no advance of the infection, but they also do not show it lessening. Even if we *do* get the OK to start feeds again in ten days we probably won't until this airway business is completely sorted out.
The current issue on the table is Aurelia's upper and lower airway. She has had three airway collapses since she's made the move back to the CICU last Friday. She generally has one every twelve hours and only when she becomes particularly worked up. This usually follows a diaper change or a bout of hunger pain. Only one of these episodes, other than the very first which got us back into the CICU, required any kind of sedative to calm her and restore breathing function. The typical pattern for these collapses is a progressive desaturation of oxygen in her blood when she's having a fit. Then we'll see a sudden drop in her saturation levels as her airway (described as 'floppy') is unable to remain open. At this point they will slap the oxygen mask on her and pump her with anywhere between 2 to 4 liters of room air to push the airway open. They will then slowly ween her from the room air over the next few hours and she will be fine.
In the intervening time the staff suctions her nose and mouth for secretions every one to two hours. Because of her severe acid reflux (which is still being medically treated) and because they have a sump running into her stomach to keep everything out of her intestines, and because of her cleft palette, our daughter produces far more secretions in her mouth and esophagus than normal. This goop is usually withdrawn via a tube inserted through the nose into the back of the throat, or directly into the mouth and down the throat into the upper airway.
Dr. Naim is our attending again (yay!) and she'll be setting up a time for Ear/Nose/Throat to examine Aurelia's airway sometime this week. They will (or maybe not) intubate her - something that is not good for her vocal cord paresis or future eating ability - depending on how far down they have to examine her airway. Treatment can be anything from C-Pap, respirators, to temporary or lifetime tracheotomy. If we do have to go with either of the last two issues we will be here for another two months or so, give or take. Feeding at that point will be done via g-tube. This test coming up is a bit more invasive so it counts as yet another surgical procedure down in the operating room.
So that's where we are. My superintendent let me be absent from a professional development day today so that I could be here for rounds and the E/N/T consult/evaluation. We'll do our best to keep people updated.
Friday, October 29, 2010
Rake an eel Malaysia
It has been a very difficult two days.
Yesterday Aurelia became symptomatic of NEC, or necrotizing enderocolitis (contains graphic pictures). The culture is still growing in the lab but our doctors are calling it and treating it as NEC until otherwise proven. A particularly nasty infection of the bowels (with uncertain causes), NEC (pronounced 'neck') attacks and kills the intestines, releasing gases in the process. These gases build up in the intestinal wall and result in perforation, eruption, and tissue death.
Treatment and the infection itself is difficult because often diagnosis is made only when physical symptoms, like hardened stomach, blood in the stool, and abdominal discoloration, are noticed during routine examination. Luckily Aurelia's case was caught particularly early by complete accident. Little A's NJ tube had been moved back into her stomach the day before and she was quite irritable yesterday morning. Our nurse, Laura, (who was an angel these last few days) noticed and worked with the doctors to get an x-ray taken to be sure the tube was still in the right place in her stomach.
That x-ray revealed the NEC. Doctors are hesitant to use the word, I've discovered. I'm not sure if they want to avoid scaring us as parents or if they treat it like teammates treat a pitcher tossing a perfect game in the seventh; as if nothing special is going on because you don't want to jinx any good luck. Aurelia began broad spectrum antibiotics, taking three of the most powerful drugs available to attack this invasion. Her feeds were immediately stopped and the NG tube removed and a sump put in place to drain her stomach. The IV process was disastrous as Jillian mentioned in a previous post, but this is when today's troubles actually first manifested. During the tortuous procedure Aurelia became so agitated her lungs refused to take air. She wasn't holding her breath; on the contrary she was pulling and tugging for all her worth, but air could not get into her lungs.
This caused concern. She settled however, was taken off the oxygen she was temporarily put on, and began responding well to treatment. Other than being cranky due to her lack of food you wouldn't have noticed much out of the ordinary. They doctors scheduled a surgical procedure to insert a PICC line (essentially an IV on crack) for today. This line centrally delivers Aurelia's medicines and fluids directly to her circulatory system at a place near the heart. While prone to infection, these lines are necessary for long treatments since IV lines tend to become useless after several days (not to mention painful!).
After a quiet afternoon and night spent with Jillian while I manned the RMH with Madison and Cassandra, Aurelia treated us to a nice and relaxed morning. We went down to the Cardiac Prep and Recovery Unit (CPRU) and met with the anesthesiologist working on Aurelia today. He failed to impress us in his level of concern and approach to Aurelia. He possessed decent understanding of her previous surgeries and recognized that a different approach with ketamine would help Aurelia avoid general anesthesia. Jillian and I supported that practical course of action since it would avoid yet another intubation and damage to Aurelia's already abused and battered esophagus.
The procedure itself went well. The PICC line went up through her femoral artery and sat nicely near her heart and we successfully avoided general anesthesia. The penalty for this was increasing the amount of ketamine given to Aurelia over time in measured and small doses. Ketamine, for the uninitiated, is a sedative with a number of interesting challenges that includes a particularly nasty streak in infants as they awake. Aurelia, from 2:00 p.m. on (minus a ten minute transfer from CPRU to CCU) wailed for all she was worth. Her sad and strained cries came with increasing pain and agitation for over two hours.
It felt helpless to watch her in such a state. I still think I am reeling from the experience. Everything happened relatively quickly upon our return and even though each individual decision made in the intervening hours happened so fast it felt like I had some sort of time lapse mechanism working to heighten my senses. My ears strained to hear every word from each doctor and my heart raced. I could feel the blood pounding through my head in my ears, almost whooshing with every heartbeat.
I had just sat down to pay some bills online when Dr.Laurence, our resident, came in for a routine check. She expressed alarm at Aurelia's effort to breathe. She smiled at us, mentioned that she'd be back in about an hour to check on her and left. Within two minutes she returned with the fellow alongside. He examined Aurelia and his normally chipper demeanor vanished. He murmured something to Dr. Laurence and left. Jillian and I knew something had gone awry when moments later he returned with our attending, Dr. Cohen.
The time mechanism I mentioned above tripped on seconds later when it seemed like our room became part of some set on ER or any other medical drama. Doctors rushed in to her bedside, her nurse scooped her up and the examinations continued. Jillian and I somehow got shuffled to the periphery and we watched this movie unfold. At the center we saw Aurelia screaming and working herself to such a frenzy she could not breathe. The attending, resident, and fellow surrounded her talking about collapsing airways and Malaysia (what the hell that had to do with anything I would find out later) and her crying being good. Other nurses arrived and the anesthesiologist came to consult on Aurelia's condition. Clearly our team in the CCU found his contributions unimpressive. Our group dismissed what he had to say because his greatest observation consisted of, "She was like this when they brought her over to us" and "She looked pale coming off the anesthesia and worked herself up, but she did calm down."
He shuffled in and out of the room for the next half hour, unwanted, not needed, and fueling rising anger and irritation in both Jillian and me. With his hunched shoulders, heavy jowls, slovenly gait, and saggy paunch he would wander bedside and make comments like, "what, is she STILL crying?" and "Is this one still worked up?" and "could this be related to her NEC?" While the venomous stare from the senior doctor on our team silenced him after that last comment, I had to leave the room previously, furious and ready to lash out at the callous and arrogant ass for his behavior.
It was like every horrible comment made by that fool punctuated the horror we saw surrounding Aurelia. First the team called for a consult from the attending in the CICU. We blanched at the request, frightened by the sudden need for critical care. The doctors kept maneuvering Aurelia around, searching for positions to ease her breathing and trying to find some way to help her get air into her lungs. They kept looking at one another and noting that she'd somehow get a few breaths in and then her body would clamp down and she'd fail to pull any air. The CICU attending arrived and they talked in serious tones, gesticulating and touching their necks. Each kept talking about Malaysia. Some small voice in my head kept saying, "what the f*ck?!?" each time I heard it mentioned. They ran over all the particulars of Aurelia and Jillian and I chipped in multiple times when something went overlooked in the rush to get an opinion. I felt particularly proud of Jillian in that moment knowing that when she needed to be sharp and focused for our girl she shone brilliantly.
Our attending and fellow came over to us while the rest buzzed around Aurelia talking and monitoring and trying to calm her and help her breathe. They told us that while the obvious concern was still NEC it had become more and more apparent to them the last three or so days that some sort of airway problem continued to impact Aurelia's improvement. She said that cardiac babies with a paralyzed vocal cord often suffer similar issues, but that this seemed somewhat different as the problem went beyond the previously suspected lung disease. They suspected tracheal malasia. Rake an eel Malaysia??!?!
Apparently tracheal malasia is a weakening condition of the trachea in which malformed or poorly formed cartilage collapses during exhalation which prevents any air from reaching the lungs during inhalation. Dr. Cohen just finished explaining this to us when she told us that we'd be transfered back to the intensive care unit. Tears flowed in our eyes at the step back. We knew that something like this might happen but I still hate that it has. Truthfully, even typing about it now makes me cry some knowing that our little girl needs such extensive care still. She is such a fighter, but it is so hard watching her struggle and hurt so much for so long now.
It is the best place for her. Until we get this airway issue nailed down Aurelia needs the closely monitored 24 hour care. The real blow to our emotions and endurance came in two parts during this discussion with Dr. Cohen. First she talked with us about the big picture, making it quite clear that in all likelihood we will go home with a g-tube of some kind and that if this is tracheal malasia that we may be facing some very scary decisions and treatments - the kind that might forever change how our daughter looks and talks and breathes. Second, and even more psychologically damaging I think, she described Aurelia as first and foremost 'fragile.'
What a word. I know it's true and I know it has been true all along. She is such a determined girl, though that I cling to her strength. It sounds silly, doesn't it, that a 33 year old man and father of a CHD baby clings to that same child's strength? She has been the fuel that keeps me going back and forth between here and Gettysburg, or between Gettysburg and work, and above all in my own mind where I have to fight the loneliness of living alone away from my family and working long days in a thick emotional fog.
She is such an amazing girl. She gives me all the strength I need that I think hearing Dr. Cohen use the word fragile described not just Aurelia's physical condition, but also how this emotional and spiritual marathon has left Jillian, Madison and me. Of course this is all reflection after the fact, because moments after Dr. Cohen said, 'fragile' I left to store our personal affects in a locker on site and the team called her away to examine what appeared to be a hardening stomach.
I returned to see Jillian looking even more distraught. Aurelia's distress revealed a hardened stomach, a classic sign of progressing NEC. Immediately the pace and intensity in the room ratcheted up and an all hospital page went out for the x-ray unit to immediately come directly to our room in the CCU. Aurelia so discolored herself and was pushing her lungs and diaphragm so hard that she actually revealed what appeared to be a umbilical hernia. Our room was full of nurses from the CICU, our nurses, attending physicians, fellows, and residents. Even the social worker from the CICU showed up (and thank God she did) to help talk us through this disaster even as Aurelia screamed so loud we could hear her in the hallway. (For the record, that was such a feat given her one paralyzed vocal cord that we couldn't even focus and had to go back in to her room for a moment to be sure she was OK).
I swear I felt a mixture of awe and fear and pride at the same time during all this. Fear, of course, for Aurelia and for Jillian and me, but awe at this unbelievable mobilization of medical talent and material, and pride at Aurelia's pure determination and will to fight and not give up during any of these challenges. She continues to inspire.
We made our way to the CICU and whisked our way into pod 5, bed 4, where a nurse we had previously in the CICU, Michelle, stood ready. The teams there transferred Aurelia's care with precision and focus and I thanked myself again for the CCU nurse, Laura. She stayed longer than anyone else to work closely with the CICU team to inform them about Aurelia's care and preferences, and even promised to look in on us tomorrow. Not ten minutes later the level of care seen in the CICU versus the CCU became apparent. The fellow informed us of a way to discover malasia (though Aurelia was so worked up we couldn't try it), they called for a mild sedative to simply allow Aurelia to rest, took a babygram (full body x-ray), and got labs drawn to get immediately analyzed.
Aurelia settled finally and we left her in good hands knowing that we needed to see Madison and that we could think clearer with a little distance and space. We'll keep you all posted as to how things develop and please know that your love and prayers and positive thoughts are so very much appreciated.
Yesterday Aurelia became symptomatic of NEC, or necrotizing enderocolitis (contains graphic pictures). The culture is still growing in the lab but our doctors are calling it and treating it as NEC until otherwise proven. A particularly nasty infection of the bowels (with uncertain causes), NEC (pronounced 'neck') attacks and kills the intestines, releasing gases in the process. These gases build up in the intestinal wall and result in perforation, eruption, and tissue death.
Treatment and the infection itself is difficult because often diagnosis is made only when physical symptoms, like hardened stomach, blood in the stool, and abdominal discoloration, are noticed during routine examination. Luckily Aurelia's case was caught particularly early by complete accident. Little A's NJ tube had been moved back into her stomach the day before and she was quite irritable yesterday morning. Our nurse, Laura, (who was an angel these last few days) noticed and worked with the doctors to get an x-ray taken to be sure the tube was still in the right place in her stomach.
That x-ray revealed the NEC. Doctors are hesitant to use the word, I've discovered. I'm not sure if they want to avoid scaring us as parents or if they treat it like teammates treat a pitcher tossing a perfect game in the seventh; as if nothing special is going on because you don't want to jinx any good luck. Aurelia began broad spectrum antibiotics, taking three of the most powerful drugs available to attack this invasion. Her feeds were immediately stopped and the NG tube removed and a sump put in place to drain her stomach. The IV process was disastrous as Jillian mentioned in a previous post, but this is when today's troubles actually first manifested. During the tortuous procedure Aurelia became so agitated her lungs refused to take air. She wasn't holding her breath; on the contrary she was pulling and tugging for all her worth, but air could not get into her lungs.
This caused concern. She settled however, was taken off the oxygen she was temporarily put on, and began responding well to treatment. Other than being cranky due to her lack of food you wouldn't have noticed much out of the ordinary. They doctors scheduled a surgical procedure to insert a PICC line (essentially an IV on crack) for today. This line centrally delivers Aurelia's medicines and fluids directly to her circulatory system at a place near the heart. While prone to infection, these lines are necessary for long treatments since IV lines tend to become useless after several days (not to mention painful!).
After a quiet afternoon and night spent with Jillian while I manned the RMH with Madison and Cassandra, Aurelia treated us to a nice and relaxed morning. We went down to the Cardiac Prep and Recovery Unit (CPRU) and met with the anesthesiologist working on Aurelia today. He failed to impress us in his level of concern and approach to Aurelia. He possessed decent understanding of her previous surgeries and recognized that a different approach with ketamine would help Aurelia avoid general anesthesia. Jillian and I supported that practical course of action since it would avoid yet another intubation and damage to Aurelia's already abused and battered esophagus.
The procedure itself went well. The PICC line went up through her femoral artery and sat nicely near her heart and we successfully avoided general anesthesia. The penalty for this was increasing the amount of ketamine given to Aurelia over time in measured and small doses. Ketamine, for the uninitiated, is a sedative with a number of interesting challenges that includes a particularly nasty streak in infants as they awake. Aurelia, from 2:00 p.m. on (minus a ten minute transfer from CPRU to CCU) wailed for all she was worth. Her sad and strained cries came with increasing pain and agitation for over two hours.
It felt helpless to watch her in such a state. I still think I am reeling from the experience. Everything happened relatively quickly upon our return and even though each individual decision made in the intervening hours happened so fast it felt like I had some sort of time lapse mechanism working to heighten my senses. My ears strained to hear every word from each doctor and my heart raced. I could feel the blood pounding through my head in my ears, almost whooshing with every heartbeat.
I had just sat down to pay some bills online when Dr.Laurence, our resident, came in for a routine check. She expressed alarm at Aurelia's effort to breathe. She smiled at us, mentioned that she'd be back in about an hour to check on her and left. Within two minutes she returned with the fellow alongside. He examined Aurelia and his normally chipper demeanor vanished. He murmured something to Dr. Laurence and left. Jillian and I knew something had gone awry when moments later he returned with our attending, Dr. Cohen.
The time mechanism I mentioned above tripped on seconds later when it seemed like our room became part of some set on ER or any other medical drama. Doctors rushed in to her bedside, her nurse scooped her up and the examinations continued. Jillian and I somehow got shuffled to the periphery and we watched this movie unfold. At the center we saw Aurelia screaming and working herself to such a frenzy she could not breathe. The attending, resident, and fellow surrounded her talking about collapsing airways and Malaysia (what the hell that had to do with anything I would find out later) and her crying being good. Other nurses arrived and the anesthesiologist came to consult on Aurelia's condition. Clearly our team in the CCU found his contributions unimpressive. Our group dismissed what he had to say because his greatest observation consisted of, "She was like this when they brought her over to us" and "She looked pale coming off the anesthesia and worked herself up, but she did calm down."
He shuffled in and out of the room for the next half hour, unwanted, not needed, and fueling rising anger and irritation in both Jillian and me. With his hunched shoulders, heavy jowls, slovenly gait, and saggy paunch he would wander bedside and make comments like, "what, is she STILL crying?" and "Is this one still worked up?" and "could this be related to her NEC?" While the venomous stare from the senior doctor on our team silenced him after that last comment, I had to leave the room previously, furious and ready to lash out at the callous and arrogant ass for his behavior.
It was like every horrible comment made by that fool punctuated the horror we saw surrounding Aurelia. First the team called for a consult from the attending in the CICU. We blanched at the request, frightened by the sudden need for critical care. The doctors kept maneuvering Aurelia around, searching for positions to ease her breathing and trying to find some way to help her get air into her lungs. They kept looking at one another and noting that she'd somehow get a few breaths in and then her body would clamp down and she'd fail to pull any air. The CICU attending arrived and they talked in serious tones, gesticulating and touching their necks. Each kept talking about Malaysia. Some small voice in my head kept saying, "what the f*ck?!?" each time I heard it mentioned. They ran over all the particulars of Aurelia and Jillian and I chipped in multiple times when something went overlooked in the rush to get an opinion. I felt particularly proud of Jillian in that moment knowing that when she needed to be sharp and focused for our girl she shone brilliantly.
Our attending and fellow came over to us while the rest buzzed around Aurelia talking and monitoring and trying to calm her and help her breathe. They told us that while the obvious concern was still NEC it had become more and more apparent to them the last three or so days that some sort of airway problem continued to impact Aurelia's improvement. She said that cardiac babies with a paralyzed vocal cord often suffer similar issues, but that this seemed somewhat different as the problem went beyond the previously suspected lung disease. They suspected tracheal malasia. Rake an eel Malaysia??!?!
Apparently tracheal malasia is a weakening condition of the trachea in which malformed or poorly formed cartilage collapses during exhalation which prevents any air from reaching the lungs during inhalation. Dr. Cohen just finished explaining this to us when she told us that we'd be transfered back to the intensive care unit. Tears flowed in our eyes at the step back. We knew that something like this might happen but I still hate that it has. Truthfully, even typing about it now makes me cry some knowing that our little girl needs such extensive care still. She is such a fighter, but it is so hard watching her struggle and hurt so much for so long now.
It is the best place for her. Until we get this airway issue nailed down Aurelia needs the closely monitored 24 hour care. The real blow to our emotions and endurance came in two parts during this discussion with Dr. Cohen. First she talked with us about the big picture, making it quite clear that in all likelihood we will go home with a g-tube of some kind and that if this is tracheal malasia that we may be facing some very scary decisions and treatments - the kind that might forever change how our daughter looks and talks and breathes. Second, and even more psychologically damaging I think, she described Aurelia as first and foremost 'fragile.'
What a word. I know it's true and I know it has been true all along. She is such a determined girl, though that I cling to her strength. It sounds silly, doesn't it, that a 33 year old man and father of a CHD baby clings to that same child's strength? She has been the fuel that keeps me going back and forth between here and Gettysburg, or between Gettysburg and work, and above all in my own mind where I have to fight the loneliness of living alone away from my family and working long days in a thick emotional fog.
She is such an amazing girl. She gives me all the strength I need that I think hearing Dr. Cohen use the word fragile described not just Aurelia's physical condition, but also how this emotional and spiritual marathon has left Jillian, Madison and me. Of course this is all reflection after the fact, because moments after Dr. Cohen said, 'fragile' I left to store our personal affects in a locker on site and the team called her away to examine what appeared to be a hardening stomach.
I returned to see Jillian looking even more distraught. Aurelia's distress revealed a hardened stomach, a classic sign of progressing NEC. Immediately the pace and intensity in the room ratcheted up and an all hospital page went out for the x-ray unit to immediately come directly to our room in the CCU. Aurelia so discolored herself and was pushing her lungs and diaphragm so hard that she actually revealed what appeared to be a umbilical hernia. Our room was full of nurses from the CICU, our nurses, attending physicians, fellows, and residents. Even the social worker from the CICU showed up (and thank God she did) to help talk us through this disaster even as Aurelia screamed so loud we could hear her in the hallway. (For the record, that was such a feat given her one paralyzed vocal cord that we couldn't even focus and had to go back in to her room for a moment to be sure she was OK).
I swear I felt a mixture of awe and fear and pride at the same time during all this. Fear, of course, for Aurelia and for Jillian and me, but awe at this unbelievable mobilization of medical talent and material, and pride at Aurelia's pure determination and will to fight and not give up during any of these challenges. She continues to inspire.
We made our way to the CICU and whisked our way into pod 5, bed 4, where a nurse we had previously in the CICU, Michelle, stood ready. The teams there transferred Aurelia's care with precision and focus and I thanked myself again for the CCU nurse, Laura. She stayed longer than anyone else to work closely with the CICU team to inform them about Aurelia's care and preferences, and even promised to look in on us tomorrow. Not ten minutes later the level of care seen in the CICU versus the CCU became apparent. The fellow informed us of a way to discover malasia (though Aurelia was so worked up we couldn't try it), they called for a mild sedative to simply allow Aurelia to rest, took a babygram (full body x-ray), and got labs drawn to get immediately analyzed.
Aurelia settled finally and we left her in good hands knowing that we needed to see Madison and that we could think clearer with a little distance and space. We'll keep you all posted as to how things develop and please know that your love and prayers and positive thoughts are so very much appreciated.
Thursday, October 28, 2010
Too Soon - a step back
I write this post with a heavy heart because I feel like I spoke too soon with my post froom 2 days ago. Because I am writing this from my phone and not a regular compute keyboard, I will keep this brief with the intent to post more later. Faithful readers, please offer extra prayers and send positive thoughts, good vibes, and whatever else youhave in your arsenal for Little Aurelia. She had a routine x-ray this morning that showed air pockets in her bowels. She is being aggressively treated for a life-threatening intestinal infection called necratizing endocolitis (I probably have the spelling wrong on that right now). It is also known as NEC and though she hasn't been officially diagnosed, they are really hopeful that it was caught early. She is okay right now, with the exception of some irritability and being seriously pissed off about the 4 sticks that she has already had (to get blood and to place an IV, which still hasn't been placed and is the reason why I needed to step out of her room - okay, I'm pretty pissed off about it too). Charley is on his way here and we greatly appreciate all of the goodness that you send our way. We'll update again when we are able.
Love,
Jillian
Love,
Jillian
Wednesday, October 27, 2010
The Little Things
Since Aurelia's arrival, there have been lots of Big Things that we have recorded in this blog: her two surgeries, the placement of the NJ tube, the cardiac cath to name just a few. Tonight I'd like to take a few minutes to comment on some of The Small Things have meant so very much to me over the last several weeks. In no particular order:
- Vet Dogs - the weekly program at the Ronald McDonald House that brings a number of dogs to the house, which is great for all of the children (and adults) who miss their pets while they are here! Tonight brought about 8 dogs, all in Halloween costumes!
- The nurse who gave the simple advice of turning on the lights in Aurelia's room during the daytime. Up until then, I had been leaving them off, thinking that the darkness would be soothing to her. Now I take time to turn the lights on each day and let my little girl enjoy looking around a bit! No need to be in darkness all the time!
- The Connolly Center at CHOP. This is a section of the hospital that has a variety of things - classes (such as the CPR class that we took a couple of weeks ago), a library for kids, sleep rooms for parents that need to stay over but don't have space in their child's room, laundry facilities, and lots of freebies. We have picked up a number of lovely handmade blankets and an adorable teddy bear for Aurelia and a fun froggy pillow for Madison. Lots of people donate things for kids and families at CHOP and this is where they put a lot of those things, which is a nice treat! They also have water, fruit, and other yummy treats out during the day.
- Similar to the Connolly Center are the Ronald McDonald Family Rooms at CHOP. These are spaces for family to gather and visit without taking up a ton of room in the child's room, or to wait while your child is in surgery, or to just chill out in for a while. Sometimes they put food out for the families. There are also two computers for families to use, which is great to do a quick email check or facebook or blog update!
- Cookie Decorating - another evening activity at the Ronald McDonald House (Maddie has had fun with this a few times already!).
- Chocolate Milk - an endless supply of it, which is always delicious!
- My Mom's help (which is actually a Big Thing, but I don't think I've mentioned how much I appreciate it). It has been really special having Madison with me during our stay here, but we couldn't have done it without help. I need to spend time at the hospital each day and it is great that she can be with Madison when I can't be with her.
- The Nourishment Room - this is where I store my breast milk in the CCU. There is a freezer just for milk (and if you are curious, I am quite "prolific" and have actually filled 5 tubs with pumped milk so far. I'm actually going to donate some of my milk because we don't have the space to store it at home and I am currently taking up 1/2 of the freezer space!).
- The phone calls, emails, cards, hugs, and prayers from everyone cheering for us ~ these things are what keeps us going. Many people have said how strong they think that we are and how well we are handling it. To those people, my response is that I don't know any other way to handle it. I have to be strong for both of my girls and I will do whatever I can for them. It is a lot, but the strength and support of so many others is what gives me that extra boost on the days that I have trouble finding my own strength. So thank you to all of you.
- The prayer shawls - I was sent 3 different gorgeous prayer shawls made from various church groups (one from my own church, another from a high school classmate of Charley's and the last one from the mother of one of Charley's co-workers). All three are snugly and warm and filled with love. I have been keeping them at the hospital and use them each day.
- Tickets - Charley's dad bowls with a guy who read our blog and felt that we might enjoy some baseball. He sent us tickets to one of the Phillies playoff games (the last game, to be exact), which was so very kind. We didn't make it to the game because Aurelia had a procedure done that day and we needed to be with her. But, we donated the tickets to another family at the Ronald McDonald House and seeing their looks of happiness was wonderful. It was so great of him to send us those tickets and we were really happy to "pay it forward" and make someone else happy too!
- The dinners (and weekend breakfasts) at the Ronald McDonald House are amazing. Different groups come in each night and usually prepare a smorgasbord of different things. I don't think that we've had a bad meal yet. And to think - all that (plus the activities and the room) for just $15 a night. Amazing. The Ronald McDonald House is just an amazing place. I will certainly be putting my extra change into the little bin whenever I eat at McDonald's!
- Halloween Costumes - last night at dinner, they rolled in 2 giant clothing racks full of brand new costumes and allowed each child to pick one out. I had already ordered costumes for the girls, but by a stroke of luck, my order got messed up and the original costumes that I ordered weren't going to make it here on time. So, I picked out a costume for Madison and ordered something new for Aurelia. I'll post pictures after Halloween!
- The smiles from strangers.
- The Fellow who always asks me during Rounds how I think that Aurelia is doing. It is great to be included and Dr. Janson really makes an effort to make sure that parents feel that they are a part of their child's care team.
- Sleep chairs at the hospital - I don't get to nap too often at the hospital, but when I do, these chairs are the best! I can get comfy and still be two feet from Aurelia's crib. Very nice!
- The big squeezes and Eskimo Kisses that Madison gives me each day when I head to the hospital. Sometimes these are accompanied by tears because she doesn't want me to leave her, but I still really appreciate the hugs and kisses!
- The bow that was placed in Aurelia's hair while she was in the CICU and the Mohawk that she was recently given while in the CCU (okay, daddy gave her the Mohawk, but I'm still thankful for it!).
There are probably tons and tons more of these Little Things. The last one, which is probably the Biggest Big Thing of all is the hope that I feel for my little girl. I was so scared when I first found out that she had a congenital heart defect. We have come a long way in the last five months. And we still have a great distance to travel. But I feel hope for the future and that is a very good Thing, Big and Little!
Tuesday, October 26, 2010
A Quick Update
It has been a long time since our last post and I think that Charley and I are both feeling overwhelmed, but quite guilty that we haven't posted a decent update in over a week. We both know that this blog has a number of purposes and none of those is to add extra stress to either of us. We want to keep everyone updated, but sometime exhaustion wins out and a post doesn't happen until we are well-rested. Or maybe just better-rested.
This evening I thought I would do a quick post, just to let you know what has been going on with Aurelia. First of all, she had her cardiac catheter last Friday and while there were a couple of scary moments during the cath (her heart had to be shocked twice because it began to "flutter" a bit), she came out of it relatively unscathed. Her heart looks good. The repairs that she had during her surgery seem to be doing well. The long and the short of it is that her breathing issues do not seems to be related to the heart.
Some other events that have happened in the last few days - she is completely off of oxygen (she had gone back on it when she went for her cath and they had a bit of difficulty getting her off of it originally), which is great. Her breathing is still fairly labored and while she seems to be a belly breather, she "tugs" quite a bit when she breathes, particularly when she's worked up. I have had the pleasure of being able to calm her down on several occasions when she has been worked up. Sometimes it is hard to feel truly like a parent while your baby is in the hospital and surrounded by so many "other" people, so those moments are really special.
Her feeds is another big issue that needs to be resolved before we are allowed to go home. At one point we were told that she could go home with the tube that she currently has (the NJ, which goes into her intestines, the jejunum, to be exact). The NJ has been a huge help with her reflux and I have felt that she's a lot calmer and more serene since she's had that tube in. However, unlike the NG tube (which went into her stomach and seemed to cause a lot more reflux), it is not one that we can replace at home, should she pull it out. Because she is on continuous feeds, we would run into some real dangers if she were to pull the tube out. We'd have to get to a hospital pretty quickly and the doctors here are uncomfortable with that situation. Instead, there has been some talk about a G-tube, which goes from her side directly into her stomach (the current tube in in her nose). That would be a surgical procedure and it is not one that they suggest lightly. First of all, she'd have to go under anesthesia again. Also, while it would be much easier for us to manage at home, the G-tube is a huge commitment. Aurelia would have it for 2-4 years and while she wouldn't necessarily need it continuously during that time, she could still be "hooked up" at night and get feeds that would guarantee that she'd get the nourishment that she needs.
One funny side story that goes along with this is that I was trying to get an understanding of how the g-tube works and I asked what she would be fed during those 2-4 years (wondering about whether or not she would be able to eat table food when she reached the appropriate age) and Charley dead-panned that I'd need to pump for all that time! It was a funny moment that added a bit of levity to the conversation, which was much-needed at that moment!
It was decided that before they make a decision about the G-tube, the doctors want to give Aurelia another chance to "prove" that she has (or doesn't have) reflux. They put her on a new medication that will tone the band of the sphincter on her esophagus. This will, hopefully, help prevent reflux from occurring. They are giving her 3 days to get this medication into her system. On Thursday they are going to pull back her NJ tube back into her stomach (so it will be an NG again) and then they are going to do a Swallow Study, which will see whether or not her saliva is going where it is supposed to go. From there, they'll see whether or not she truly has reflux and then they'll make a decision about keeping NG (and sending us home with that) or putting in a G-tube (and sending us home with that).
Either way, we are getting closer to discharge. We accomplished a couple of the "housekeeping" items that needed to be done today. We went for a VCUG and an ultrasound. The VCUG was for kidney follow-up and the ultrasound was two-fold. First, they looked at her brain (to follow-up on the clot that she had in-utero). Secondly, the pulmonary doctors suggested that her diaphragm be ultrasounded, just in case a portion of it was paralyzed (since her left vocal cord is paralyzed and the two could be connected) and that was causing some of her breathing difficulties. I was able to be with Aurelia for both tests and it was another one of those "mommy moments" where I felt really proud that I knew what my baby needed when she was upset.
During the VCUG, she had to have a urinary catheter placed and then they filled her bladder with a contrast to see where the flow was going. We waited for her to pee so that they could take the pictures. When she finally did, I was happy to hear that there wasn't any reflux into the kidneys. All systems seem to be functioning normally! And then she pooped all over the table (and the technician). Another proud mommy moment :)
The results of the ultrasound were also good. The clot in her brain continues to diminish and resolve itself and her diaphragm seems to be moving, so paralysis does not seem to have occurred. We still don't understand the breathing difficulties, but we are ruling out a number of things. All good signs.
Our little girl continues to amaze us. She turned one-month old over the weekend. It is hard to believe that she's a month old already and that it has been almost six weeks since I've been home. I miss my house and my cats and the feeling of "home." Most of all, I miss having my family all together. I am happy to say that I feel like that day is coming closer. Charley and I were reluctant to set up a nursery for Aurelia prior to her arrival. We were really scared that we'd set up a nursery and then we would never bring our baby home. I think that it is safe to say that we can start thinking about how we want to decorate her room. I'm looking forward to making the choice of "Jungle" or "Zoo."
This evening I thought I would do a quick post, just to let you know what has been going on with Aurelia. First of all, she had her cardiac catheter last Friday and while there were a couple of scary moments during the cath (her heart had to be shocked twice because it began to "flutter" a bit), she came out of it relatively unscathed. Her heart looks good. The repairs that she had during her surgery seem to be doing well. The long and the short of it is that her breathing issues do not seems to be related to the heart.
Some other events that have happened in the last few days - she is completely off of oxygen (she had gone back on it when she went for her cath and they had a bit of difficulty getting her off of it originally), which is great. Her breathing is still fairly labored and while she seems to be a belly breather, she "tugs" quite a bit when she breathes, particularly when she's worked up. I have had the pleasure of being able to calm her down on several occasions when she has been worked up. Sometimes it is hard to feel truly like a parent while your baby is in the hospital and surrounded by so many "other" people, so those moments are really special.
Her feeds is another big issue that needs to be resolved before we are allowed to go home. At one point we were told that she could go home with the tube that she currently has (the NJ, which goes into her intestines, the jejunum, to be exact). The NJ has been a huge help with her reflux and I have felt that she's a lot calmer and more serene since she's had that tube in. However, unlike the NG tube (which went into her stomach and seemed to cause a lot more reflux), it is not one that we can replace at home, should she pull it out. Because she is on continuous feeds, we would run into some real dangers if she were to pull the tube out. We'd have to get to a hospital pretty quickly and the doctors here are uncomfortable with that situation. Instead, there has been some talk about a G-tube, which goes from her side directly into her stomach (the current tube in in her nose). That would be a surgical procedure and it is not one that they suggest lightly. First of all, she'd have to go under anesthesia again. Also, while it would be much easier for us to manage at home, the G-tube is a huge commitment. Aurelia would have it for 2-4 years and while she wouldn't necessarily need it continuously during that time, she could still be "hooked up" at night and get feeds that would guarantee that she'd get the nourishment that she needs.
One funny side story that goes along with this is that I was trying to get an understanding of how the g-tube works and I asked what she would be fed during those 2-4 years (wondering about whether or not she would be able to eat table food when she reached the appropriate age) and Charley dead-panned that I'd need to pump for all that time! It was a funny moment that added a bit of levity to the conversation, which was much-needed at that moment!
It was decided that before they make a decision about the G-tube, the doctors want to give Aurelia another chance to "prove" that she has (or doesn't have) reflux. They put her on a new medication that will tone the band of the sphincter on her esophagus. This will, hopefully, help prevent reflux from occurring. They are giving her 3 days to get this medication into her system. On Thursday they are going to pull back her NJ tube back into her stomach (so it will be an NG again) and then they are going to do a Swallow Study, which will see whether or not her saliva is going where it is supposed to go. From there, they'll see whether or not she truly has reflux and then they'll make a decision about keeping NG (and sending us home with that) or putting in a G-tube (and sending us home with that).
Either way, we are getting closer to discharge. We accomplished a couple of the "housekeeping" items that needed to be done today. We went for a VCUG and an ultrasound. The VCUG was for kidney follow-up and the ultrasound was two-fold. First, they looked at her brain (to follow-up on the clot that she had in-utero). Secondly, the pulmonary doctors suggested that her diaphragm be ultrasounded, just in case a portion of it was paralyzed (since her left vocal cord is paralyzed and the two could be connected) and that was causing some of her breathing difficulties. I was able to be with Aurelia for both tests and it was another one of those "mommy moments" where I felt really proud that I knew what my baby needed when she was upset.
During the VCUG, she had to have a urinary catheter placed and then they filled her bladder with a contrast to see where the flow was going. We waited for her to pee so that they could take the pictures. When she finally did, I was happy to hear that there wasn't any reflux into the kidneys. All systems seem to be functioning normally! And then she pooped all over the table (and the technician). Another proud mommy moment :)
The results of the ultrasound were also good. The clot in her brain continues to diminish and resolve itself and her diaphragm seems to be moving, so paralysis does not seem to have occurred. We still don't understand the breathing difficulties, but we are ruling out a number of things. All good signs.
Our little girl continues to amaze us. She turned one-month old over the weekend. It is hard to believe that she's a month old already and that it has been almost six weeks since I've been home. I miss my house and my cats and the feeling of "home." Most of all, I miss having my family all together. I am happy to say that I feel like that day is coming closer. Charley and I were reluctant to set up a nursery for Aurelia prior to her arrival. We were really scared that we'd set up a nursery and then we would never bring our baby home. I think that it is safe to say that we can start thinking about how we want to decorate her room. I'm looking forward to making the choice of "Jungle" or "Zoo."
Wednesday, October 20, 2010
Days 26 & 27, some new pictures
Before the NJ tube was put in, Aurelia had an NG tube. Here she is just a few hours before she went in for the procedure:
To transport her to the IR lab, Aurelia was put into this little cart and wheeled down, along with her monitor, an oxygen tank, 2 nurses, a fellow, and me! That was quite a trip down a few hallways, on the elevator, and down a few more hallways.
When she returned with her new NJ tube, Aurelia was exhausted from the procedure. All she wanted to do was sleep! We let her.
The next day, Maddie wanted to see her baby sister. I had my mom snap this shot of the 3 of us, hoping that Daddy would see it and know how much we miss him! As you can see, Daddy left Aurelia his Yankees hat, hoping that it would give them an extra boost to make their way to the World Series yet again!
And here's our baby girl, wide awake and enjoying the afternoon!
To transport her to the IR lab, Aurelia was put into this little cart and wheeled down, along with her monitor, an oxygen tank, 2 nurses, a fellow, and me! That was quite a trip down a few hallways, on the elevator, and down a few more hallways.
When she returned with her new NJ tube, Aurelia was exhausted from the procedure. All she wanted to do was sleep! We let her.
The next day, Maddie wanted to see her baby sister. I had my mom snap this shot of the 3 of us, hoping that Daddy would see it and know how much we miss him! As you can see, Daddy left Aurelia his Yankees hat, hoping that it would give them an extra boost to make their way to the World Series yet again!
And here's our baby girl, wide awake and enjoying the afternoon!
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