I heard on the radio the other day that a person needs to keep 3 things in order to make it through any trial. Faith...perspective..and a sense of humor. Perspective is the easiest thing to hang onto in the NICU (unless you have the sickest baby in the whole place, then you're in trouble with that one). You are surrounded by tiny babies, sickly babies, teary-eyed parents and somber doctors. And yet, no matter where you rank in the "how sick is your baby" conversation, I find that people are completely compassionate. Everyone seems to sense that somebody, somewhere, is in worse shape than they are. I hear parents swapping stories that make me want to cry...and then listen to them comfort each other and sometimes even congratulate each other. We are, after all, new parents...for however long we've got. I'm grateful for the perspective as I think it mostly blocks out the desire to completely flip out that often rears its ugly head. Faith, well, that one's easy. When you've seen the miracles I've seen...let's just say that one's rock solid about now. Humor, that's another story. I'm not sure that we'll ever look back on this one and laugh.
The results of Emmett's CT Angioscan were pretty conclusive for the doctors. No abnormalities were found in his blood and no clots. They determined that his aortic arch was narrowed in two spots (instead of one like we had thought) and that he would, in fact, require heart surgery. The PPHN seems to have "resolved" they said, although they still have him on a bit of oxygen therapy and small doses of medication, just in case. We have spent a little less than a week waiting for the surgery, having already been slated to have it once and being bumped from the schedule for a more critical case. We got over it pretty quick, primarily because Emmett is so easily rescheduled because he is in such stable shape and babies who need emergency surgery need it for a reason. You don't want your baby to be at the top of the surgery list in the NICU. In the meantime, Emmett is learning to eat from a bottle, hold up his head, watch his new mobile (thanks to Jessica and Andrew) and listen to music. He enjoys sitting up and spends more and more time awake, much to the delight of mom and dad and grandparents too.
I try to avoid thinking too hard about the surgery itself but its almost impossible. Open heart surgery is a huge deal for anyone, although his doctors do multiple surgeries like this every day. We are lucky to have the most amazing cardiothorasic surgeon, Dr. Hanley, to perform Emmett's coarc repair and arch reconstruction. He couldn't be in better hands. Literally. He will have to go on a heart-lung bypass machine which will pump his blood and oxygenate it for him so that the heart can be stopped while they operate on it. I think the technology involved is absolutely amazing and I am so grateful for it...but when I want to feel better I imagine myself taking a big hammer to that bypass machine and smashing it to pieces. After the surgery is successful of course....
Emmett is scheduled to be Hanley's second surgery tomorrow, so we are keeping our fingers crossed that nothing happens to bump him from the schedule. Until then...we wait..and pray...and wait. And we thank God immensely that Emmett is not on the top of the list.
Monday, December 5, 2011
Monday, November 28, 2011
Leaving on a Jet Plane
Emmett continued to avoid the cath lab for a week, spiking another fever that led into the weekend. Over the weekend, the pressure in his lungs dropped to about half of systemic, which was the lowest number we had ever seen, and it stayed that way into Monday morning. After a bit of debate, the powers that be decided that the balloon angioplasty was still the way to go, to eliminate the coarctation as a possible contributor to the PPHN. Monday afternoon found Emmett wheeling down the hallway for a 5 hour procedure, during which I was updated numerous times by a variety of nurses and doctors...some of whom just checked in on him during the procedure out of curiosity. The balloon portion of the procedure went fabulously, taking the coarc out of the equation for the time being. The cardiac surgeon reported that the pressure was still holding in the 40's and began to discuss a plan for weaning Emmett off of the various medications that he was on and working toward sending him home. It was the first time that the "H" word had ever been mentioned, and I was on cloud nine for the rest of the day.
It took Emmett 3 days to wean off the the nitric oxide (dependency is always an issue with that medication over long periods of time) during which time his lung pressure went back up. He stayed intubated after the procedure, which irritated his lungs (and irritated him in general) and at almost four weeks was not as easily sedated. When the nitric was finally weaned, they were able to extubate him and Dad was able to hold him for the very first time. We began holding him every time that we visited and although the lung pressure did not seem to be improving, Emmett himself began to look like he was really getting better. He was happy to be eating again, happy to be held and extremely happy not to have a tube down his throat. But another weekend went by without improvement in his lung pressure and the doctors began to get frustrated once again.
With Dad on vacation for the week of Thanksgiving it was easy to take all the kids for multiple visits to the NICU. On the Wednesday before Turkey Day, we found ourselves at the zoo with them, after a lovely visit that morning to the hospital. When I received a phone call from the cardiologist, I sent Brian off with them to get ice cream, expecting to hear once again that the day's echocardiogram was like all the rest had been and that the pressure was the same. Instead, he told me that they had decided to send Emmett up to Stanford to be treated by Dr. Jeff Feinstein, the foremost cardiac pulmonary hypertension specialist on the west coast. I suppose with a little warning I would have been more excited by this news, or at least resigned to it, but without knowing that they had even been talking about it, I was instantly in tears (quite unsettling for Dad -who knew who I was talking to and watched me go from relaxed to distressed rather quickly). I sorted my way through the conversation and realized that nothing with Emmett had actually changed, the doctors had simply come to the conclusion that their knowledge of PPHN was not enough to help Emmett. Dr. Feinstein, they were certain, could find the way to fix him...if he was fixable...and they believed he was. They did not want to wait until he was not.
Thanksgiving morning found us in the NICU, holding Emmett and waiting for his transport team from Stanford to arrive. It was an incredibly frustrating experience since the communication with us was really bad. We had not been told that he was leaving in the morning, and we had also not been told that he was flying instead of driving. The very worst part was when the pilot asked me if I would like to accompany him. Dad and I were both in shock...we had been told that parents are never allowed to tag along in an ambulance...let alone an airplane! I was completely unprepared to fly on a moment's notice...had not packed, pumped, not even sure if I had my wallet with me. We had planned to have Thanksgiving dinner with the family, go home and pack, and head up to Stanford that evening. I wanted so badly to say yes but knew that Brian would have to pack all the kids, himself and my stuff (for an undetermined amount of time). So I declined....which broke my heart into tiny pieces. Looking back on it, I should have just gone.
After the holiday feast, we piled everyone in the car and headed up to the Bay Area, meeting Noni and Grandpa around midnight to trade cars so that they could take the sleeping kids back to their house (about 45 minutes south of Stanford) and we could continue on up to Lucille Packard Children's Hospital. We managed to find our way to Emmett's new bedside, where we found him looking beautiful and already dealing with changes in his medication. Right away we were briefed by a nurse practitioner and cardiologist, who explained the changes in the medication and gave us some idea of what their plan was for the next few days...which mostly involved getting him off the many medications that he was still on and seeing what his body could do. We have found that their approach is very much in line with our thinking...if he looks like a healthy baby then treat him like one...until you have a reason not to.
After 4 days at Stanford, Emmett has made great strides. He is off all of the medication that he was receiving through the ventilator or PICC lines, so he has a nasal cannula and receives his meds orally. He is learning to eat with a bottle and doing quite well for someone who had no nipple experience for the first five weeks of his life. He has had two echocardiograms, both of which showed that the pulmonary hypertension is better. He is gorgeous and mellow and all the nurses love him. Everyone at Stanford is young, beautiful and ridiculously smart. They would be easy to hate if they didn't have such fantastic personalities and they clearly are attached to Emmett.
He had a procedure today call a Cath Angio, where dye is injected through an IV and then the heart/lungs/veins/arteries are all mapped with a high resolution scanner. It is much more detailed than a regular cath (and much less invasive) and the result is a 3-D reconstruction of the respiratory system located in the chest and abdomen. Emmett currently has a significant difference between the blood pressures in his upper and lower body, so they suspect that he may have a blood clot somewhere in there or a constriction of some kind. I expect tomorrow will be a big day in discovering what's going on inside that little body and coming up with the next step in treatment.
As always, we are grateful for the mountain of prayers that are being offered on our behalf. We cannot adequately express our gratitude for those who take care of our children, bring food and treats, send cards and emails and above all, offer prayers on our behalf. The hospital staff are constantly amazed by the level of support that we have and I am sure that their inspiration comes, in part, from the prayers that are offered on their behalf as well. As hard as it is to have a family living in two places at once, we are certain that Emmett is where he needs to be and thrilled at the progress that he has made.
It took Emmett 3 days to wean off the the nitric oxide (dependency is always an issue with that medication over long periods of time) during which time his lung pressure went back up. He stayed intubated after the procedure, which irritated his lungs (and irritated him in general) and at almost four weeks was not as easily sedated. When the nitric was finally weaned, they were able to extubate him and Dad was able to hold him for the very first time. We began holding him every time that we visited and although the lung pressure did not seem to be improving, Emmett himself began to look like he was really getting better. He was happy to be eating again, happy to be held and extremely happy not to have a tube down his throat. But another weekend went by without improvement in his lung pressure and the doctors began to get frustrated once again.
With Dad on vacation for the week of Thanksgiving it was easy to take all the kids for multiple visits to the NICU. On the Wednesday before Turkey Day, we found ourselves at the zoo with them, after a lovely visit that morning to the hospital. When I received a phone call from the cardiologist, I sent Brian off with them to get ice cream, expecting to hear once again that the day's echocardiogram was like all the rest had been and that the pressure was the same. Instead, he told me that they had decided to send Emmett up to Stanford to be treated by Dr. Jeff Feinstein, the foremost cardiac pulmonary hypertension specialist on the west coast. I suppose with a little warning I would have been more excited by this news, or at least resigned to it, but without knowing that they had even been talking about it, I was instantly in tears (quite unsettling for Dad -who knew who I was talking to and watched me go from relaxed to distressed rather quickly). I sorted my way through the conversation and realized that nothing with Emmett had actually changed, the doctors had simply come to the conclusion that their knowledge of PPHN was not enough to help Emmett. Dr. Feinstein, they were certain, could find the way to fix him...if he was fixable...and they believed he was. They did not want to wait until he was not.
Thanksgiving morning found us in the NICU, holding Emmett and waiting for his transport team from Stanford to arrive. It was an incredibly frustrating experience since the communication with us was really bad. We had not been told that he was leaving in the morning, and we had also not been told that he was flying instead of driving. The very worst part was when the pilot asked me if I would like to accompany him. Dad and I were both in shock...we had been told that parents are never allowed to tag along in an ambulance...let alone an airplane! I was completely unprepared to fly on a moment's notice...had not packed, pumped, not even sure if I had my wallet with me. We had planned to have Thanksgiving dinner with the family, go home and pack, and head up to Stanford that evening. I wanted so badly to say yes but knew that Brian would have to pack all the kids, himself and my stuff (for an undetermined amount of time). So I declined....which broke my heart into tiny pieces. Looking back on it, I should have just gone.
After the holiday feast, we piled everyone in the car and headed up to the Bay Area, meeting Noni and Grandpa around midnight to trade cars so that they could take the sleeping kids back to their house (about 45 minutes south of Stanford) and we could continue on up to Lucille Packard Children's Hospital. We managed to find our way to Emmett's new bedside, where we found him looking beautiful and already dealing with changes in his medication. Right away we were briefed by a nurse practitioner and cardiologist, who explained the changes in the medication and gave us some idea of what their plan was for the next few days...which mostly involved getting him off the many medications that he was still on and seeing what his body could do. We have found that their approach is very much in line with our thinking...if he looks like a healthy baby then treat him like one...until you have a reason not to.
After 4 days at Stanford, Emmett has made great strides. He is off all of the medication that he was receiving through the ventilator or PICC lines, so he has a nasal cannula and receives his meds orally. He is learning to eat with a bottle and doing quite well for someone who had no nipple experience for the first five weeks of his life. He has had two echocardiograms, both of which showed that the pulmonary hypertension is better. He is gorgeous and mellow and all the nurses love him. Everyone at Stanford is young, beautiful and ridiculously smart. They would be easy to hate if they didn't have such fantastic personalities and they clearly are attached to Emmett.
He had a procedure today call a Cath Angio, where dye is injected through an IV and then the heart/lungs/veins/arteries are all mapped with a high resolution scanner. It is much more detailed than a regular cath (and much less invasive) and the result is a 3-D reconstruction of the respiratory system located in the chest and abdomen. Emmett currently has a significant difference between the blood pressures in his upper and lower body, so they suspect that he may have a blood clot somewhere in there or a constriction of some kind. I expect tomorrow will be a big day in discovering what's going on inside that little body and coming up with the next step in treatment.
As always, we are grateful for the mountain of prayers that are being offered on our behalf. We cannot adequately express our gratitude for those who take care of our children, bring food and treats, send cards and emails and above all, offer prayers on our behalf. The hospital staff are constantly amazed by the level of support that we have and I am sure that their inspiration comes, in part, from the prayers that are offered on their behalf as well. As hard as it is to have a family living in two places at once, we are certain that Emmett is where he needs to be and thrilled at the progress that he has made.
Tuesday, November 8, 2011
The NICU
17 days in the NICU. Seems like a lifetime but compared to some of the sweet little preemies that Emmett rooms with, it's barely a start. Marcus across the way has been in since August 23...his parents haven't even held him yet. Emmett and I have had one precious hour in a rocking chair that was life changing. The NICU is a place where you learn quickly to appreciate the tiniest of things. I spent a long time this morning holding Emmett's beautiful left foot because it was the first time he didn't have any wires, cuffs or tape on it.
Emmett's situation has changed frequently. After several days on nitric oxide and prostecyclin, his pulmonary hypertension remained unchanged. Everything else about his body was functioning great, the heart looked good, he worked his way up to full feeds (breastmilk), was oxygenating his own body very well, and grumping at us every time he pooped his diaper. He got a new cardiologist last Friday, who seems much more concerned about his lack of progress than others have been, who restarted the prostoglandin to reopen the ductus on Friday night, and called us both in for a consult on Saturday afternoon.
We learned quickly that when the doctors want to sit down with you in a conference room and not consult by the baby's bedside, that it's not a good sign. We proceeded to have a long meeting where we discussed, quite simply, that Emmett's doctors are completely baffled by his hypertension. His heart problems, however severe they may or may not be, don't logically relate to the high pressure in the lungs, and they were very worried that he wasn't responding to any medication. They had an idea to surgically create a hole between his right and left atrium, something the surgeons had never done before. They began to list possible outcomes that could/would take place if the root of the hypertension problem isn't found. One example is that the pulmonary veins become permanently altered (incorrectly). Another example is that the heart starts to fail. It became quite clear that each example had the same prognosis...incompatibility with life. Patients with these outcomes can only be saved with lung and/or heart transplants. To date, there are no known heart/lung transplants that have ever been successfully done. Let's just say that we needed an hour or so to compose ourselves before we left the conference room. It's not an easy thing to be told by your baby's doctor, "We need a miracle."
After an intense night of prayer, brainstorming and licking our wounds, we woke up to a morning of more prayer, fasting and a greater resolve to keep the faith. When we arrived at the hospital, the doctors had a new working theory, that the coarctation may be a greater problem than originally thought. They were in much better spirits, thus we were in much better spirits...wondering if this was the miracle that we had prayed for.
All the cardiologists, neonatologists and surgeons meet every Monday morning to discuss each case. We had already been told by several people that Emmett's is the most confusing case that they had ever seen. Nothing adds up and his body changes every day, sometimes even every hour and they can't keep up with what's going on. His cardiologist went into the "big" meeting with a plan to do a coarctation repair, so we waited on pins and needles Monday morning to find out whether or not he would be added to the surgery board. By the afternoon, we were back to conferencing with the doctors (bedside, in the hall, anywhere but the conference room!).
The majority of those in the meeting were in favor of doing another heart cath procedure. This time, they want to add a balloon angioplasty, where they use a balloon to temporarily stretch the aorta as a way to relieve the high pressure in the lungs. They also want to see if the coarctation is worse than previously suspected, and/or see if there is anything else that they can learn with the procedure.
The doctors are not all in agreement on how Emmett's case should be handled. Some think that the coarc repair will fix the whole problem. Others think that the two problems are completely unrelated. Others, including the surgeon who would do the coarc surgery, think it may be necessary later on but would be extremely risky to do until the hypertension is gone. What do we think? We think that our emotions seem to mirror whichever doctor we are talking to...if he's tense and resigned..then we go home in tears. When she laughs, jokes and talks about all the great things that Emmett's body is doing...then we go home talking about what it will be like when he's home with us. I've begun to think that this is the most important NICU lesson that I have learned- how to own my own emotions and outlook and avoid letting the doctors' personalities and tendencies toward drama affect me. It's harder than it sounds.
Emmett avoided his heart cath today by spiking a fever of 103 last night. By the time we got to the NICU this morning, his fever was gone and he looked better than he had in days. Brian and I wonder if he's just trying to avoid another procedure and wishing we would just give him more time to get better on his own. We often wonder if everyone is looking too hard at the "data"...and missing out on the "baby" and what he tells us with his body. For now, his cath is rescheduled for Thursday. We anxiously await whatever baffling thing that he will do in the next 48 hours to completely change the situation. Maybe he'll just get better.
Emmett's situation has changed frequently. After several days on nitric oxide and prostecyclin, his pulmonary hypertension remained unchanged. Everything else about his body was functioning great, the heart looked good, he worked his way up to full feeds (breastmilk), was oxygenating his own body very well, and grumping at us every time he pooped his diaper. He got a new cardiologist last Friday, who seems much more concerned about his lack of progress than others have been, who restarted the prostoglandin to reopen the ductus on Friday night, and called us both in for a consult on Saturday afternoon.
We learned quickly that when the doctors want to sit down with you in a conference room and not consult by the baby's bedside, that it's not a good sign. We proceeded to have a long meeting where we discussed, quite simply, that Emmett's doctors are completely baffled by his hypertension. His heart problems, however severe they may or may not be, don't logically relate to the high pressure in the lungs, and they were very worried that he wasn't responding to any medication. They had an idea to surgically create a hole between his right and left atrium, something the surgeons had never done before. They began to list possible outcomes that could/would take place if the root of the hypertension problem isn't found. One example is that the pulmonary veins become permanently altered (incorrectly). Another example is that the heart starts to fail. It became quite clear that each example had the same prognosis...incompatibility with life. Patients with these outcomes can only be saved with lung and/or heart transplants. To date, there are no known heart/lung transplants that have ever been successfully done. Let's just say that we needed an hour or so to compose ourselves before we left the conference room. It's not an easy thing to be told by your baby's doctor, "We need a miracle."
After an intense night of prayer, brainstorming and licking our wounds, we woke up to a morning of more prayer, fasting and a greater resolve to keep the faith. When we arrived at the hospital, the doctors had a new working theory, that the coarctation may be a greater problem than originally thought. They were in much better spirits, thus we were in much better spirits...wondering if this was the miracle that we had prayed for.
All the cardiologists, neonatologists and surgeons meet every Monday morning to discuss each case. We had already been told by several people that Emmett's is the most confusing case that they had ever seen. Nothing adds up and his body changes every day, sometimes even every hour and they can't keep up with what's going on. His cardiologist went into the "big" meeting with a plan to do a coarctation repair, so we waited on pins and needles Monday morning to find out whether or not he would be added to the surgery board. By the afternoon, we were back to conferencing with the doctors (bedside, in the hall, anywhere but the conference room!).
The majority of those in the meeting were in favor of doing another heart cath procedure. This time, they want to add a balloon angioplasty, where they use a balloon to temporarily stretch the aorta as a way to relieve the high pressure in the lungs. They also want to see if the coarctation is worse than previously suspected, and/or see if there is anything else that they can learn with the procedure.
The doctors are not all in agreement on how Emmett's case should be handled. Some think that the coarc repair will fix the whole problem. Others think that the two problems are completely unrelated. Others, including the surgeon who would do the coarc surgery, think it may be necessary later on but would be extremely risky to do until the hypertension is gone. What do we think? We think that our emotions seem to mirror whichever doctor we are talking to...if he's tense and resigned..then we go home in tears. When she laughs, jokes and talks about all the great things that Emmett's body is doing...then we go home talking about what it will be like when he's home with us. I've begun to think that this is the most important NICU lesson that I have learned- how to own my own emotions and outlook and avoid letting the doctors' personalities and tendencies toward drama affect me. It's harder than it sounds.
Emmett avoided his heart cath today by spiking a fever of 103 last night. By the time we got to the NICU this morning, his fever was gone and he looked better than he had in days. Brian and I wonder if he's just trying to avoid another procedure and wishing we would just give him more time to get better on his own. We often wonder if everyone is looking too hard at the "data"...and missing out on the "baby" and what he tells us with his body. For now, his cath is rescheduled for Thursday. We anxiously await whatever baffling thing that he will do in the next 48 hours to completely change the situation. Maybe he'll just get better.
Sunday, October 30, 2011
The Good, the Bad and the Ugly
Wednesday evening was quite a bit scarier than we were anticipating. An afternoon echo showed that the pressure in the right side of the heart was not getting better, even after the docs reintroduced the prostoglandin medication. We met with the cardiology team, who told us that they believed the next step in the process was to perform an angiogram, otherwise known as a heart cath.
A heart cath is a procedure where a catheter is inserted into the femeral artery (in the thigh) and moved up into the heart, where dye is then injected to map the entire area. This seemed to be the best way to ascertain the exact problem causing the pressure in the right side, but it is considered a surgical procedure and does involve some risks and possible damaging outcomes. The docs were confident that it was the right move, so we consented. Let's just say there were several extremely emotional hours spent in the waiting room, lots of prayer, and a few tears.
Emmett handled the procedure with flying colors, and the docs came away with a diagnosis of Persistent Pulmonary Hypertension of the Newborn, or PPHN. This is a condition where the blood flow is not correctly going through the lungs, adding oxygen, and instead it is passing through the Ductus Arteriosis, which fails to close. It is a separate condition from any of his heart issues, fairly rare in newborns and the treatment was simply to keep him on the nitric oxide that he was already on and attempt to lower the pressure. One great piece of news that came from the angiogram was that the doctor plugged the ductus while he was doing the cath, just the see what the heart would do, and told us that he was even more confident that surgery would not be necessary to fix the heart.
It is now Sunday night and the pulmonary pressure is still unchanged. After a brief and brutal conference with the neonatologist, we are more tense than we have been all week. The docs are not happy with the lack of change in the pressure and they have added a new medication, prostocyclene, into the mix. We have learned a little bit more about how dangerous PPHN is to a newborn, and it is frustrating that we are unable to get any kind of prognosis, timeline or even an opinion on how severe his case is. The doctors and nurses all keep repeating that it "unpredictable" and that only time will tell. After a week in the NICU, we have lost all sense of time.
There are definitely some improvements going on. Emmett finally got to have his first meal (colostrum..the liquid gold) on Friday afternoon. I felt a huge weight lift from my shoulders after his meals started. He still gets his milk from a feeding tube, but the doctor bumped him up to every three hours, which is fantastic. We are also thrilled that the ductus is almost completely closed and the left side of the heart seems to be functioning quite adequately. We move farther away from heart surgery every day.
Once again, we called on the power of our Heavenly Father today by administering to Emmett a priesthood blessing. It was the high point of the day, feeling like there was finally something that we could do to help him heal, instead of just sitting next to his bedside, watching and waiting. Sometimes the nurses do little procedures, like fixing a picc line or changing the caps on his lines, and they let me help. We are blessed to have such kind nurses administering to our son. Sometimes when we have to back up to let them do some kind of medical fix, I notice that they apologize or say "excuse me" every time they walk between us and the baby. We are treated with reverence and sincere sympathy.
The Lord is our companion in all of this. Tomorrow morning I have every expectation that Emmett's pressure will be better and that if it is not, his doctors will be blessed with all the right answers.
A heart cath is a procedure where a catheter is inserted into the femeral artery (in the thigh) and moved up into the heart, where dye is then injected to map the entire area. This seemed to be the best way to ascertain the exact problem causing the pressure in the right side, but it is considered a surgical procedure and does involve some risks and possible damaging outcomes. The docs were confident that it was the right move, so we consented. Let's just say there were several extremely emotional hours spent in the waiting room, lots of prayer, and a few tears.
Emmett handled the procedure with flying colors, and the docs came away with a diagnosis of Persistent Pulmonary Hypertension of the Newborn, or PPHN. This is a condition where the blood flow is not correctly going through the lungs, adding oxygen, and instead it is passing through the Ductus Arteriosis, which fails to close. It is a separate condition from any of his heart issues, fairly rare in newborns and the treatment was simply to keep him on the nitric oxide that he was already on and attempt to lower the pressure. One great piece of news that came from the angiogram was that the doctor plugged the ductus while he was doing the cath, just the see what the heart would do, and told us that he was even more confident that surgery would not be necessary to fix the heart.
It is now Sunday night and the pulmonary pressure is still unchanged. After a brief and brutal conference with the neonatologist, we are more tense than we have been all week. The docs are not happy with the lack of change in the pressure and they have added a new medication, prostocyclene, into the mix. We have learned a little bit more about how dangerous PPHN is to a newborn, and it is frustrating that we are unable to get any kind of prognosis, timeline or even an opinion on how severe his case is. The doctors and nurses all keep repeating that it "unpredictable" and that only time will tell. After a week in the NICU, we have lost all sense of time.
There are definitely some improvements going on. Emmett finally got to have his first meal (colostrum..the liquid gold) on Friday afternoon. I felt a huge weight lift from my shoulders after his meals started. He still gets his milk from a feeding tube, but the doctor bumped him up to every three hours, which is fantastic. We are also thrilled that the ductus is almost completely closed and the left side of the heart seems to be functioning quite adequately. We move farther away from heart surgery every day.
Once again, we called on the power of our Heavenly Father today by administering to Emmett a priesthood blessing. It was the high point of the day, feeling like there was finally something that we could do to help him heal, instead of just sitting next to his bedside, watching and waiting. Sometimes the nurses do little procedures, like fixing a picc line or changing the caps on his lines, and they let me help. We are blessed to have such kind nurses administering to our son. Sometimes when we have to back up to let them do some kind of medical fix, I notice that they apologize or say "excuse me" every time they walk between us and the baby. We are treated with reverence and sincere sympathy.
The Lord is our companion in all of this. Tomorrow morning I have every expectation that Emmett's pressure will be better and that if it is not, his doctors will be blessed with all the right answers.
Wednesday, October 26, 2011
Let the Roller Coaster Begin!
Emmett has been at Children's Hospital now for about three days. He is a very peaceful, tolerant baby who looks huge compared to what are mostly preemies in the NICU. He is out of his incubette and up on his own tiny bed, hooked up to a few machines to monitor all the vitals and administer nutrition, since he is not allowed to actually "eat" before surgery. He has a nice little supply of breast milk at the NICU freezer waiting for him. He is not on oxygen (breathing room air) and has a steady stream of visitors that he frequently smiles for.
Day One had the doctors scheduling him for surgery for a coarctation repair on Wednesday. They were highly confident that the left ventricle would do its job successfully and the surgery would be simple and completely effective. After a Monday morning case conference (all the cardiologists and surgeons meet and discuss each heart case to get everyone's input) they decided to bump the surgery back to Thursday. They decided to discontinue giving him Prostoglandin, which they had been administering to keep his Ductus-Arteriosis open. Since the Ductus normally closes after birth, artificially keeping it open had kept the blood flow in his heart operating smoothly. But it has also kept us from knowing exactly what his heart is capable of on its own.
It's been around 36 hours since they discontinued the Prostoglandin, and Emmett has had regular echo-cardiograms (he finally got to meet Kelly!) to see if we are making progress on the ductus closing. The last echo showed that the pressure in the right side of the heart may be preventing the ductus from ever closing completely, so last night they administered Nitris Oxide to help facilitate the closing. Some time later this morning, Emmett will be getting another echocardiogram to determine if the nitris is working and the ductus is closing. When that happens, we will see for the first time what his heart will do on its own.
Sometime during all of this process, the doctors came back with a new opinion that there is not, in fact, a coarctation of the aorta. They now believe that the smaller left ventricle is a result of the combination of a smaller than normal mitral valve, aortic valve and aortic arch. Why are these valves smaller than normal? No real answer or diagnosis on that one.
On one hand, this is good news. No coarctation means no coarc surgery. On the other hand, the combination of smaller valves will require some kind of surgical fix if his heart cannot function on its own (without the prostoglandin when the ductus finally completely closes). What will that surgical fix be?
That's what we are waiting to find out...hopefully today.
We are in the Lord's hands and he has carried us through the last few days with a peace that I would have thought would be impossible to experience. Of course we are scared and frustrated, and can barely keep up with the constantly changing medical landscape. It's almost impossible not to pick him up and hold him every time I'm there (which I'm not allowed to do), and I'm dying inside that he hasn't eaten for three days. Despite all these reasons for a perfectly justified complete emotional breakdown, we are finding that the comfort the Spirit brings us seems to have no limits, nor does the love and support of our family and friends.
We know that Emmett will come home soon. Our goal is to bring him there as whole and healthy as possible and the amazing doctors at Children's have the same goal. That brings us into the new day filled with hope and confidence that we will get his little heart figured out. Keep up the prayers...they are surely making a difference.
Day One had the doctors scheduling him for surgery for a coarctation repair on Wednesday. They were highly confident that the left ventricle would do its job successfully and the surgery would be simple and completely effective. After a Monday morning case conference (all the cardiologists and surgeons meet and discuss each heart case to get everyone's input) they decided to bump the surgery back to Thursday. They decided to discontinue giving him Prostoglandin, which they had been administering to keep his Ductus-Arteriosis open. Since the Ductus normally closes after birth, artificially keeping it open had kept the blood flow in his heart operating smoothly. But it has also kept us from knowing exactly what his heart is capable of on its own.
It's been around 36 hours since they discontinued the Prostoglandin, and Emmett has had regular echo-cardiograms (he finally got to meet Kelly!) to see if we are making progress on the ductus closing. The last echo showed that the pressure in the right side of the heart may be preventing the ductus from ever closing completely, so last night they administered Nitris Oxide to help facilitate the closing. Some time later this morning, Emmett will be getting another echocardiogram to determine if the nitris is working and the ductus is closing. When that happens, we will see for the first time what his heart will do on its own.
Sometime during all of this process, the doctors came back with a new opinion that there is not, in fact, a coarctation of the aorta. They now believe that the smaller left ventricle is a result of the combination of a smaller than normal mitral valve, aortic valve and aortic arch. Why are these valves smaller than normal? No real answer or diagnosis on that one.
On one hand, this is good news. No coarctation means no coarc surgery. On the other hand, the combination of smaller valves will require some kind of surgical fix if his heart cannot function on its own (without the prostoglandin when the ductus finally completely closes). What will that surgical fix be?
That's what we are waiting to find out...hopefully today.
We are in the Lord's hands and he has carried us through the last few days with a peace that I would have thought would be impossible to experience. Of course we are scared and frustrated, and can barely keep up with the constantly changing medical landscape. It's almost impossible not to pick him up and hold him every time I'm there (which I'm not allowed to do), and I'm dying inside that he hasn't eaten for three days. Despite all these reasons for a perfectly justified complete emotional breakdown, we are finding that the comfort the Spirit brings us seems to have no limits, nor does the love and support of our family and friends.
We know that Emmett will come home soon. Our goal is to bring him there as whole and healthy as possible and the amazing doctors at Children's have the same goal. That brings us into the new day filled with hope and confidence that we will get his little heart figured out. Keep up the prayers...they are surely making a difference.
Happy Birthday Emmett!
Saturday October 22 was a pretty busy day. I spent the day cleaning the whole house, finishing baby projects and kid wrangling, while Brian taught a few lessons, helped a family move some furniture, and came home to help finish Operation Get Your House in Order. After a long day of kids/manual labor, it was no big surprise that our post-kid-bedtime peace and quiet was interrupted with a long string of contractions. It had become an evening ritual that week, and I drew a bath, started in on a VERY large glass of water, and waited for the contractions to settle down and fade away.
After a few minutes in the bath, I decided the contractions were getting faster, not slower, and Brian began timing them. It took only about 30 minutes before they were 2 minutes apart (um, excuse me, what?) but the intensity was still very bearable and we debated whether or not it was even worth calling the hospital. Brian finally called the Birthing Center- deciding to err on the side of caution- and they told us to come in (of course!) so we did. It was comforting to just pick up the already-packed overnight bag and camera and be on our way, although we figured there was a 99% chance that we would just be coming right back.
After an hour in the triage unit, the doctor had determined that my water was NOT broken, that I was only dilated to a measly 2.5, but he was not ready to send me home with contractions that were still 2 minutes apart and increasing in intensity. After another hour of observation, the intensity had increased so much that he decided the best thing to do was just call the transition team at Children's and get the C-section going. At that point we had no objections, as it was clear by the contractions that labor was REAL and that Emmett wasn't going to wait a minute longer.
After several hours of unmedicated labor leading up to some indescribably life-changingly intense contractions that will forever change my definition of "worst pain ever", I was rolled into the operating room and delivered the most beautiful baby boy that you will ever meet. Emmett Dean was born on October 23 at 2:42 in the morning, weighing in at 7 lbs, 15 oz. and 19.25" long. He has beautiful blue eyes and light brown with hints of red hair, perfect skin and an amazing ability to tolerate all the poking, prodding, testing and pain that the first few days of his life brought him. He was taken to Children's Hospital a few hours after birth, and got to meet his siblings a few hours later, which was a truly beautiful experience for all of them.
After a few minutes in the bath, I decided the contractions were getting faster, not slower, and Brian began timing them. It took only about 30 minutes before they were 2 minutes apart (um, excuse me, what?) but the intensity was still very bearable and we debated whether or not it was even worth calling the hospital. Brian finally called the Birthing Center- deciding to err on the side of caution- and they told us to come in (of course!) so we did. It was comforting to just pick up the already-packed overnight bag and camera and be on our way, although we figured there was a 99% chance that we would just be coming right back.
After an hour in the triage unit, the doctor had determined that my water was NOT broken, that I was only dilated to a measly 2.5, but he was not ready to send me home with contractions that were still 2 minutes apart and increasing in intensity. After another hour of observation, the intensity had increased so much that he decided the best thing to do was just call the transition team at Children's and get the C-section going. At that point we had no objections, as it was clear by the contractions that labor was REAL and that Emmett wasn't going to wait a minute longer.
After several hours of unmedicated labor leading up to some indescribably life-changingly intense contractions that will forever change my definition of "worst pain ever", I was rolled into the operating room and delivered the most beautiful baby boy that you will ever meet. Emmett Dean was born on October 23 at 2:42 in the morning, weighing in at 7 lbs, 15 oz. and 19.25" long. He has beautiful blue eyes and light brown with hints of red hair, perfect skin and an amazing ability to tolerate all the poking, prodding, testing and pain that the first few days of his life brought him. He was taken to Children's Hospital a few hours after birth, and got to meet his siblings a few hours later, which was a truly beautiful experience for all of them.
Catchup
So much has happened in Emmett's life over the past week but I thought it was worth a short post to catchup the events of the last month so here goes....
Having one last ultrasound with a new high-risk OBGYN at Kaiser actually put my mind at ease (I know, huge surprise!) Met Dr. Fuentes and had a fantastic appt.- he was up to speed on my chart, had organized and hand-picked my entire transition team from Children's hospital, coordinated the whole surgery with my own OBGYN (Dr. Khadye) and completely explained the entire procedure to me, including the part where I would definitely get to hold Emmett before they took him away to Children's hospital. That part made my day! My faith in Kaiser was restored, and with all the echocardiagrams and ultrasounds behind us, we settled in for a few weeks to wait until the scheduled C-section that would occur on November 1st.
The last few weeks were fairly uneventful. I went in for regular Non-Stress tests (to test baby's movement in a non-stress situation) where Emmett routinely failed to meet the measurements because he kept falling asleep during the tests (no surprise, I kept falling asleep too). No big deal. He was adequately moving and since I had my diabetes under control, Dr. Khadye was very generous in letting me go home each time, instead of shipping me off to the hospital for further tests.
On Tuesday, October 18, I went in for another NST, where Emmett started the test sleeping like a rock. After a few minutes, he not only woke up, but started giving me contractions every 6 minutes. I could hardly blame Dr. Khadye for sending me over to the hospital for further testing, but the doctor there confirmed that I was not in labor (dialated to umm, ZERO) and after a gallon of water, the contractions lost their frequency and regularity and I raced home, determined to be far more ready if another hospital visit was in my future (I didn't even have a bag packed!). I began to wonder if we were going to make it to the scheduled C-section after all. We sped up our schedule accordingly, racing to finish all house projects, baby projects, etc. to attempt a state of "ready" in the event that Emmett decided to come early.
It's a good thing that we did.....
Having one last ultrasound with a new high-risk OBGYN at Kaiser actually put my mind at ease (I know, huge surprise!) Met Dr. Fuentes and had a fantastic appt.- he was up to speed on my chart, had organized and hand-picked my entire transition team from Children's hospital, coordinated the whole surgery with my own OBGYN (Dr. Khadye) and completely explained the entire procedure to me, including the part where I would definitely get to hold Emmett before they took him away to Children's hospital. That part made my day! My faith in Kaiser was restored, and with all the echocardiagrams and ultrasounds behind us, we settled in for a few weeks to wait until the scheduled C-section that would occur on November 1st.
The last few weeks were fairly uneventful. I went in for regular Non-Stress tests (to test baby's movement in a non-stress situation) where Emmett routinely failed to meet the measurements because he kept falling asleep during the tests (no surprise, I kept falling asleep too). No big deal. He was adequately moving and since I had my diabetes under control, Dr. Khadye was very generous in letting me go home each time, instead of shipping me off to the hospital for further tests.
On Tuesday, October 18, I went in for another NST, where Emmett started the test sleeping like a rock. After a few minutes, he not only woke up, but started giving me contractions every 6 minutes. I could hardly blame Dr. Khadye for sending me over to the hospital for further testing, but the doctor there confirmed that I was not in labor (dialated to umm, ZERO) and after a gallon of water, the contractions lost their frequency and regularity and I raced home, determined to be far more ready if another hospital visit was in my future (I didn't even have a bag packed!). I began to wonder if we were going to make it to the scheduled C-section after all. We sped up our schedule accordingly, racing to finish all house projects, baby projects, etc. to attempt a state of "ready" in the event that Emmett decided to come early.
It's a good thing that we did.....
Friday, September 16, 2011
If I have to go to the doctor's office one more time...I think I'm gonna be sick!
So, its been a little while since I caught everyone up on the details of Emmett's heart situation. A lot has happened, but not much has changed. I've definitely had some special experiences- "special" in a warm, fuzzy kinda way and "special" in a "seriously? You get paid to do this???" kinda way.
Short update on mom- I was diagnosed with gestational diabetes and am now responsible for eating healthy foods and pricking my fingers to test blood sugar levels four times a day. After weeks of inability to get control over my morning fasting levels (too many hormones I guess) they have now put me on medication to bring blood sugar levels down overnight. The medication works great....number one side effect...nausea. Welcome back morning sickness- can't say I missed you that much. Top it off with a very nasty chest cold and you end up with one mama who has had enough doctors, treatments, opinions, lectures, medications and tiny, boring portions of healthy food to last a life time. Still wouldn't trade a moment of it for the precious baby boy growing inside, but he could sure be a little easier on me!
Our last trip over to Children's Hospital was very special. Kelly had me wait for the "good" machine and as I lingered in the hallway, I began flirting with the cutest baby boy in a stroller. I commented to his mom," He looks so new, how many weeks is he?" She informed me (nicely) that he was 3 months old. After I pulled my foot out of my mouth (duh, remember where you are!) we began chatting and she shared that he was a hypoplastic right heart baby by the name of Kyle. We chatted about Emmett for a minute and immediately bonded (while Kyle is making googly eyes at me and smiling the whole time) and she showed me his chest scar and let me know he was on his way to prepare for surgery number two. We both got called away but realized we would probably see each other again due to our babies' circumstances. I thought of Kyle this morning, since his surgery was yesterday. Our prayers are with him.
The echo went great. Kelly is still the Superman of technicians. He told me right off that he pulled another child's file and compared it to our file and that all the measurements and circumstances matched perfectly. I asked if it was a child with coarctation of the aorta and he said, "Yup, that's why I compared them. I think we're narrowing it down." Hooray!! That's great news for us. We even had a moment of looking at the aortic arch on the screen where you could see where it had started to narrow. My confidence in the situation grows every time I go there.
Kaiser, on the other hand, would make me laugh if they weren't burning through my deductible at a phenomenally fast rate for nothing. I've had two ultrasounds with two different "specialists" there, on really crappy equipment where you can barely make out the heart, and each doctor has given me a different diagnosis (neither of which are actually the problem). One doctor is sure that its Aortic Stenosis- Kelly rolled his eyes when I shared that one and showed me three different things on the screen that meant it wasn't. The latest "specialist" this week was certain that the problem is the mitral valve, the valve that Kelly always tells me looks fantastic and is CLEARLY not the cause of the problem. I love that these doctors spend 2 minutes looking at a bad ultrasound, talk to me about the problem as if I've NEVER talked to a doctor about it before, spit out a bad diagnosis, then read the charts from Children's Hospital. On top of it all, they get to charge me hundreds of dollars for this. For this reason, I have decided to cancel my next ultrasound with them. What are they going to do, fire me?
Despite how rough the last couple of weeks have been on me, they have been great for Emmett. He is measuring around 2 weeks bigger than he should be at 33 weeks, which they attribute to the gestational diabetes (I'm not sure I do, though, since my scores haven't been really high). Since he'll be coming by c-section anyway, I say, the bigger the better. A bigger heart has a bigger chance of functioning well and if surgery is required, bigger is still better. They're projecting 9 1/2 lbs, which would be unusually large for our family. Brett was 8'15" and he was over a week late. These days, I'm trusting God's hand in everything. He has made this journey bearable and I have no doubt He will get us through the next 6 weeks no matter what happens...which will hopefully involve less sickness, better food, better sleep and at least one more pedicure because I CAN'T REACH MY TOES!
Grow, baby, grow!
Short update on mom- I was diagnosed with gestational diabetes and am now responsible for eating healthy foods and pricking my fingers to test blood sugar levels four times a day. After weeks of inability to get control over my morning fasting levels (too many hormones I guess) they have now put me on medication to bring blood sugar levels down overnight. The medication works great....number one side effect...nausea. Welcome back morning sickness- can't say I missed you that much. Top it off with a very nasty chest cold and you end up with one mama who has had enough doctors, treatments, opinions, lectures, medications and tiny, boring portions of healthy food to last a life time. Still wouldn't trade a moment of it for the precious baby boy growing inside, but he could sure be a little easier on me!
Our last trip over to Children's Hospital was very special. Kelly had me wait for the "good" machine and as I lingered in the hallway, I began flirting with the cutest baby boy in a stroller. I commented to his mom," He looks so new, how many weeks is he?" She informed me (nicely) that he was 3 months old. After I pulled my foot out of my mouth (duh, remember where you are!) we began chatting and she shared that he was a hypoplastic right heart baby by the name of Kyle. We chatted about Emmett for a minute and immediately bonded (while Kyle is making googly eyes at me and smiling the whole time) and she showed me his chest scar and let me know he was on his way to prepare for surgery number two. We both got called away but realized we would probably see each other again due to our babies' circumstances. I thought of Kyle this morning, since his surgery was yesterday. Our prayers are with him.
The echo went great. Kelly is still the Superman of technicians. He told me right off that he pulled another child's file and compared it to our file and that all the measurements and circumstances matched perfectly. I asked if it was a child with coarctation of the aorta and he said, "Yup, that's why I compared them. I think we're narrowing it down." Hooray!! That's great news for us. We even had a moment of looking at the aortic arch on the screen where you could see where it had started to narrow. My confidence in the situation grows every time I go there.
Kaiser, on the other hand, would make me laugh if they weren't burning through my deductible at a phenomenally fast rate for nothing. I've had two ultrasounds with two different "specialists" there, on really crappy equipment where you can barely make out the heart, and each doctor has given me a different diagnosis (neither of which are actually the problem). One doctor is sure that its Aortic Stenosis- Kelly rolled his eyes when I shared that one and showed me three different things on the screen that meant it wasn't. The latest "specialist" this week was certain that the problem is the mitral valve, the valve that Kelly always tells me looks fantastic and is CLEARLY not the cause of the problem. I love that these doctors spend 2 minutes looking at a bad ultrasound, talk to me about the problem as if I've NEVER talked to a doctor about it before, spit out a bad diagnosis, then read the charts from Children's Hospital. On top of it all, they get to charge me hundreds of dollars for this. For this reason, I have decided to cancel my next ultrasound with them. What are they going to do, fire me?
Despite how rough the last couple of weeks have been on me, they have been great for Emmett. He is measuring around 2 weeks bigger than he should be at 33 weeks, which they attribute to the gestational diabetes (I'm not sure I do, though, since my scores haven't been really high). Since he'll be coming by c-section anyway, I say, the bigger the better. A bigger heart has a bigger chance of functioning well and if surgery is required, bigger is still better. They're projecting 9 1/2 lbs, which would be unusually large for our family. Brett was 8'15" and he was over a week late. These days, I'm trusting God's hand in everything. He has made this journey bearable and I have no doubt He will get us through the next 6 weeks no matter what happens...which will hopefully involve less sickness, better food, better sleep and at least one more pedicure because I CAN'T REACH MY TOES!
Thursday, August 11, 2011
The Power of Prayer
For several weeks our family has been lifted up by the warmth and love of our community. Family, friends, LDS and other church members have kept us in their prayers, lit candles for us and constantly asked if there is anything that we need. We could not possibly be more fortunate to have such a loving and spiritual circle of support. We have been counting on every prayer, every fast, every positive thought that has come in our direction. After the last few days, there is absolutely no doubt in my mind that these prayers are making a difference.
Emmett and I ventured off to Children's Hospital yesterday morning for our third echocardiogram. It had been 3 weeks since the last one, so I assumed we were just continuing our watch for growth in the left side of the heart. Kelley pulled up the little ticker on the monitor and was instantly impressed by the amount of growth that could be seen without even comparing to the old measurements. I think I was in a state of perma-grin for the hour and a half that he took pictures, videos and measurements. There was a lot of growth, improved blood flow and even Dr. Jue's final parting gift to me was, "Well, it's clear the situation isn't as serious as we originally thought." A few of my favorite phrases went something like this:
"I'm really surprised at the amount of growth that we are seeing."
"This is the opposite of what I was expecting to see today."
"I think Dr. Marx in Boston was right."
"If this had been our first echo, I would say that there is no way that this will end up being a 1-ventricle heart."
and my favorite phrase of the day..."I'm going to feel bad if we put you through all this for nothing." Gee, Kelley, I think I'll get over it....
Now before we all get too excited that Emmett has no real heart problem, the fact remains that parts of his heart are smaller than they should be. That is evidenced on the screen and even I can see the differences. The main hunt now is to establish the CAUSE of the underdeveloped ventricle. There are three likely culprits: mitral valve, aortic valve, and aortic arch. Yesterday, we eliminated the mitral valve as a cause. This is great news because a mitral valve problem usually leads to Hypoplastic Left Heart Syndrome. I'm not positive that its off the table, but it seems less and less likely that Emmett will need 3 open heart surgeries. There are no words for the joy that brings to my own heart.
The jury is still out on the aortic valve vs. the arch, since the valve is still really small and hard to see. If the problem is somewhere in the arch, then this leads to Coarctation of the Aorta, a serious but much less deadly problem that can be fixed with one surgery and leaves him with a functioning left ventricle. Kelley noted that the arch had doubled in size over the last three weeks, so even though it is still small, it is still growing!
If things keep going as they are, the likely result is that Emmett will still be taken to Children's Hospital when he is born and the docs will allow his ductus arteriosis to close under heavy supervision. Then we watch to see what his heart can do on its own. Maybe coarctation will occur, maybe not.
The truth is, I have never doubted that my Father in Heaven would take care of us. The question for me was always, in what way? And watching this miracle occur as the weeks go by...watching the doctors surprise and sometimes even embarrassment as they backpedal....seeing this little boy grow and grow despite unfavorable medical odds and statistics....well, let's just say it's an amazing experience. Life changing (literally) for us both.
Your prayers, your fasts, your vigilance and your love are making a physical difference in the life of this little boy....and if his heart continues to grow at the same rate that my faith is expanding...then surely some day he will move mountains.
Emmett and I ventured off to Children's Hospital yesterday morning for our third echocardiogram. It had been 3 weeks since the last one, so I assumed we were just continuing our watch for growth in the left side of the heart. Kelley pulled up the little ticker on the monitor and was instantly impressed by the amount of growth that could be seen without even comparing to the old measurements. I think I was in a state of perma-grin for the hour and a half that he took pictures, videos and measurements. There was a lot of growth, improved blood flow and even Dr. Jue's final parting gift to me was, "Well, it's clear the situation isn't as serious as we originally thought." A few of my favorite phrases went something like this:
"I'm really surprised at the amount of growth that we are seeing."
"This is the opposite of what I was expecting to see today."
"I think Dr. Marx in Boston was right."
"If this had been our first echo, I would say that there is no way that this will end up being a 1-ventricle heart."
and my favorite phrase of the day..."I'm going to feel bad if we put you through all this for nothing." Gee, Kelley, I think I'll get over it....
Now before we all get too excited that Emmett has no real heart problem, the fact remains that parts of his heart are smaller than they should be. That is evidenced on the screen and even I can see the differences. The main hunt now is to establish the CAUSE of the underdeveloped ventricle. There are three likely culprits: mitral valve, aortic valve, and aortic arch. Yesterday, we eliminated the mitral valve as a cause. This is great news because a mitral valve problem usually leads to Hypoplastic Left Heart Syndrome. I'm not positive that its off the table, but it seems less and less likely that Emmett will need 3 open heart surgeries. There are no words for the joy that brings to my own heart.
The jury is still out on the aortic valve vs. the arch, since the valve is still really small and hard to see. If the problem is somewhere in the arch, then this leads to Coarctation of the Aorta, a serious but much less deadly problem that can be fixed with one surgery and leaves him with a functioning left ventricle. Kelley noted that the arch had doubled in size over the last three weeks, so even though it is still small, it is still growing!
If things keep going as they are, the likely result is that Emmett will still be taken to Children's Hospital when he is born and the docs will allow his ductus arteriosis to close under heavy supervision. Then we watch to see what his heart can do on its own. Maybe coarctation will occur, maybe not.
The truth is, I have never doubted that my Father in Heaven would take care of us. The question for me was always, in what way? And watching this miracle occur as the weeks go by...watching the doctors surprise and sometimes even embarrassment as they backpedal....seeing this little boy grow and grow despite unfavorable medical odds and statistics....well, let's just say it's an amazing experience. Life changing (literally) for us both.
Your prayers, your fasts, your vigilance and your love are making a physical difference in the life of this little boy....and if his heart continues to grow at the same rate that my faith is expanding...then surely some day he will move mountains.
Wednesday, July 20, 2011
Baby Heart Parts-101
Every mom can tell you that that average ultra-sound is a very close-mouthed affair. The ultra-sound technicians are usually very friendly, but avoiding telling you anything concrete about what they are seeing on the screen.They seem to understand that the slightest frown, or the simplest "What's that?" can start a pregnant mom panic. All this is easily avoided by communicating no information whatsoever. Smart move on their part. I would have panicked much sooner if anyone had given me the smallest of opinions in my first 2 ultrasounds.
Today was a totally different experience. Kelly, my echocardiogram technician, seemed to have a "Well, now that we've already given you the bad news....let's talk about everything" attitude. It was awesome! I felt like I was in an hour long pediatric cardiology class, with a student ratio of 1:1. We talked about everything I had learned so far, then he began to teach me what we were seeing on the screen. Emmett was completely cooperative today (a first!) and he laid flat on his back to give a perfect view of the heart. It looked exactly like it looks in the medical books. You could see all the valves, both ventricles (one slightly larger than the other), the aortic valve, even the blood flow into the heart from the umbilical cord. He showed me several things that Dr. Marx (Boston) had pointed out to him- the left ventricle is still apexing (shaping correctly), all valves are still working, mitral valve looks small but good, etc.
The most important piece of information from the visit was that the left side of Emmett's heart is still growing. Growth is good!
He even related some cases he had seen where even though the left side of the heart ends up hypoplastic (too small), it was big enough to perform its job (it would probably have to be at least 75% of its normal size or larger) and surgery was avoided. He even mentioned a few times when the left side effectively "caught up" to where it should be after birth. Even though these are clearly BEST case scenarios which may never apply to us, it was comforting to know that it was even possible. I will grab on to every piece of hope that is thrown my way like a ravenous dog! I don't believe that getting our hopes up will hurt us in any way.
All in all, it was a very informative, positive day. The official diagnosis remains to be seen.
Today was a totally different experience. Kelly, my echocardiogram technician, seemed to have a "Well, now that we've already given you the bad news....let's talk about everything" attitude. It was awesome! I felt like I was in an hour long pediatric cardiology class, with a student ratio of 1:1. We talked about everything I had learned so far, then he began to teach me what we were seeing on the screen. Emmett was completely cooperative today (a first!) and he laid flat on his back to give a perfect view of the heart. It looked exactly like it looks in the medical books. You could see all the valves, both ventricles (one slightly larger than the other), the aortic valve, even the blood flow into the heart from the umbilical cord. He showed me several things that Dr. Marx (Boston) had pointed out to him- the left ventricle is still apexing (shaping correctly), all valves are still working, mitral valve looks small but good, etc.
The most important piece of information from the visit was that the left side of Emmett's heart is still growing. Growth is good!
He even related some cases he had seen where even though the left side of the heart ends up hypoplastic (too small), it was big enough to perform its job (it would probably have to be at least 75% of its normal size or larger) and surgery was avoided. He even mentioned a few times when the left side effectively "caught up" to where it should be after birth. Even though these are clearly BEST case scenarios which may never apply to us, it was comforting to know that it was even possible. I will grab on to every piece of hope that is thrown my way like a ravenous dog! I don't believe that getting our hopes up will hurt us in any way.
All in all, it was a very informative, positive day. The official diagnosis remains to be seen.
Tuesday, July 19, 2011
The Beginning
Emmett began his journey as a heart baby quite appropriately on Feb.14, 2011. After years of deliberating, Mom and Dad decided to take the plunge into baby #5, on a lovely Valentine getaway in the mountains. Several weeks later, a positive test result confirmed that there was no going back. Big sister and 3 brothers waited with excitement to find out if the new addition would be another boy, or the long coveted little girl.
On June 15, Mom and Brianna went to Kaiser Hospital in Fresno for a routine ultrasound, where they learned that baby would be a boy (hooray....yes, even Brianna took it well). During that ultrasound, the tech took an exceptionally long time to take pictures, and finally gave up and asked a coworker for help. They had difficulty getting a good shot of the left side of the heart, complaining that baby wouldn't sit still or move to the right position. I thought nothing of it, at the time.
Several days later, Kaiser called our home to let me know they wanted to do a higher level ultrasound. The process kicked me over to the genetics dept., which they apologized for, saying that automatically happens whenever a follow up ultrasound is scheduled. I went in to the Kaiser Clovis clinic on June 30, where yet another tech complained of difficulty getting the desired pictures of the heart. I met with Dr. Turosi, the genetic ultrasound specialist, who informed me that he was referring me over to Children's Hospital of Central CA, where they would do an echocardiogram. He did not seem worried, and discussed the possibility of a balloon angioplasty, in the event that something minor needed repair.
On July 11, I went to CHCC to receive the recommended echo. Looking back, I wish I had not made that trip alone, but there was no way to know what a life changing experience it would be. The tech, Dr. Kelly, was really sweet, and confirmed that baby was quite the wiggler. After 30 minutes of work, he was off to go "measure the results." After waiting for the doctor to speak with me almost an hour, it was completely clear that something was wrong. I could tell they were finishing up with other patients so that they could speak with me last. Finally, Dr. Jue, the pediatric cardiologist, came in and took a seat. He confirmed that baby's heart was smaller on the left side than it should have been. He began the discussion, as everyone now does, with an explanation of how the normal heart works. Then he pulled out a picture to show me, what he called "worst case scenario" (which to me meant, this is how your baby's heart looks!) where the left atrium was shrunk down to about 20% of the size of the right. Then he wrote across the top of the paper: Hypoplastic Left Heart Syndrome.
At that point, I was still pretty calm, as I knew some internet research would be required to know what the heck he was talking about. Then the word "surgery" caught my ear. I could feel my brain switch into problem solving mode so I figured I'd better take advantage because it probably wouldn't last long. I made my questions as specific as possible. "Is there any possibility that this condition will correct on its own before birth?" The answer was no. "Is baby guaranteed to have open heart surgery when he is born?" The answer was yes. That was the point where the tears took over. They were both so kind and patient with me. I had to stop myself from running out of the room. The huge amount of extra hormones coursing through my body was not helping. They kept asking if I had any questions, and I knew I should have a million, but I had no idea what they should be. So I thanked them (which only my good upbringing could have forced me to do...I mean, seriously...who says thank you for news like that!) and made another appointment. I walked slowly to the parking lot, knowing I had to call Brian and wondering how to make it sound better than it had sounded to me. Fortunately, he handled the call well and didn't really let it sink in until later.
The next 24 hrs were filled with tears, at least for me. I cried so hard it hurt my head and I couldn't sleep. I researched until I couldn't read anymore. Medical sites = good. Personal sites/blogs= bad. One of the clearest for me was http://congenital-heart-defects.co.uk/hypoplasticheartsyndrome.aspx
The next morning I called Brian's Dad, Dr. David Hammons, retired Kaiser ER doc and medical patriarch extraordinaire. He was familiar with HLHS and decided to put in a call to his Kaiser friend in San Jose, who is a pediatric cardiologist. I mentioned to Dr. Dad (as he will now be referred to) that in my research, I had come across a fetal intervention that is sometimes done in cases of HLHS. It is new, relatively unknown, and practiced in a very small number of places in the world, let alone the U.S. The pioneers of the procedure were located at Children's Hospital of Boston. I asked Dr. Dad to mention it to his colleague, and see if he thought we were candidates for the intervention. He did so, and learned in the process that his Kaiser colleague was college roommates with a doctor from CHBoston who actually diagnoses/performs the intervention. In a matter of a day, my echocardiogram was off to Boston to be evaluated by world class specialists, to see if we were candidates for the procedure. That began a day of monumental gratitude for us.
We knew the intervention was a long-shot. But it got us thinking about all the things that we had to be grateful for, most especially, the support and knowledge of family members. We are grateful to live in a time when congenital heart diseases like this one can even be diagnosed- 30 yrs. ago that was not the case. We are also lucky to get a diagnosis in utero, many parents don't even get that now and give birth, only to find their baby is immediately sick and requires surgery. We are grateful to live so close to one of the best Children's Hospitals in the country, where the required procedures are regularly performed. Many people have to move to live by a treatment center, or spend enormous amounts of money on travel expenses. We are grateful to have health insurance. We are grateful to be a part of an amazing community of family, friends and church. We know we can count on them to get us through the coming days. A sense of gratitude has been the number one factor in dealing with the emotions that have rolled through our home like a freight train during the first week. We have felt the prayers that have been offered on our behalf, and it has made all the difference.
On July 13, I received a call from Dr. Marx at Children's Hospital of Boston. I was amazed that he took the time to call me, and floored at how kind and caring the conversation was. He did not think we were candidates for the intervention, because baby's heart was in good condition. He said, in fact, that he and his colleague did not think that the heart was "moving towards hypoplastic left heart syndrome" and that they felt the more likely problem would end up being a coarctation of the aorta. Suddenly, I found myself with a second opinion, one I had not been seeking, one that differed from the first. He had discussed his findings with Dr. Jue (Children's Hospital here) and Dr. Jue bumped my next appt. to a week instead of a month. A few days later, we met with Dr. Turosi (who referred me to Children's) and went over everything we had learned. He looked at the echo and seemed to think that the diagnosis could go either way, depending on the growth that may or may not take place in the left side of the heart.
So, tomorrow I return to Children's to have another echocardiogram. I'm approaching this appt. with low expectations, after all, how much growth can you see in one week in a heart the size of a grape. Children's will continue treating us as if the baby has HLHS, and we, of course, have great hope that we will see a change in diagnosis over the next few weeks/months to Coarctation of the Aorta. The treatment for HLHS is a series of 3 open heart surgeries that convert baby's heart from a four chamber organ to a two chamber organ. The treatment for CoA is to snip out the narrowed part of the aorta and sew the remaining parts back together. Needless to say, the difference between the two resulting qualities of life is huge.
We are overwhelmed with gratitude for the loving messages and help that we have received so far. Although the purpose of this blog is for me, personally, to have a record of all the events surrounding baby's heart condition, any and all are welcome to follow his journey, learn, and grow along with our family. We have decided, as many heart parents do, to give baby his name now. This makes the journey more personal to us, and easier for all the medical people involved as well.
Emmett Dean Hammons, we await your arrival with more emotions than we would have thought possible. Above all, we have faith that God will carry you in his hand throughout the next year, and our family along with you.
On June 15, Mom and Brianna went to Kaiser Hospital in Fresno for a routine ultrasound, where they learned that baby would be a boy (hooray....yes, even Brianna took it well). During that ultrasound, the tech took an exceptionally long time to take pictures, and finally gave up and asked a coworker for help. They had difficulty getting a good shot of the left side of the heart, complaining that baby wouldn't sit still or move to the right position. I thought nothing of it, at the time.
Several days later, Kaiser called our home to let me know they wanted to do a higher level ultrasound. The process kicked me over to the genetics dept., which they apologized for, saying that automatically happens whenever a follow up ultrasound is scheduled. I went in to the Kaiser Clovis clinic on June 30, where yet another tech complained of difficulty getting the desired pictures of the heart. I met with Dr. Turosi, the genetic ultrasound specialist, who informed me that he was referring me over to Children's Hospital of Central CA, where they would do an echocardiogram. He did not seem worried, and discussed the possibility of a balloon angioplasty, in the event that something minor needed repair.
On July 11, I went to CHCC to receive the recommended echo. Looking back, I wish I had not made that trip alone, but there was no way to know what a life changing experience it would be. The tech, Dr. Kelly, was really sweet, and confirmed that baby was quite the wiggler. After 30 minutes of work, he was off to go "measure the results." After waiting for the doctor to speak with me almost an hour, it was completely clear that something was wrong. I could tell they were finishing up with other patients so that they could speak with me last. Finally, Dr. Jue, the pediatric cardiologist, came in and took a seat. He confirmed that baby's heart was smaller on the left side than it should have been. He began the discussion, as everyone now does, with an explanation of how the normal heart works. Then he pulled out a picture to show me, what he called "worst case scenario" (which to me meant, this is how your baby's heart looks!) where the left atrium was shrunk down to about 20% of the size of the right. Then he wrote across the top of the paper: Hypoplastic Left Heart Syndrome.
At that point, I was still pretty calm, as I knew some internet research would be required to know what the heck he was talking about. Then the word "surgery" caught my ear. I could feel my brain switch into problem solving mode so I figured I'd better take advantage because it probably wouldn't last long. I made my questions as specific as possible. "Is there any possibility that this condition will correct on its own before birth?" The answer was no. "Is baby guaranteed to have open heart surgery when he is born?" The answer was yes. That was the point where the tears took over. They were both so kind and patient with me. I had to stop myself from running out of the room. The huge amount of extra hormones coursing through my body was not helping. They kept asking if I had any questions, and I knew I should have a million, but I had no idea what they should be. So I thanked them (which only my good upbringing could have forced me to do...I mean, seriously...who says thank you for news like that!) and made another appointment. I walked slowly to the parking lot, knowing I had to call Brian and wondering how to make it sound better than it had sounded to me. Fortunately, he handled the call well and didn't really let it sink in until later.
The next 24 hrs were filled with tears, at least for me. I cried so hard it hurt my head and I couldn't sleep. I researched until I couldn't read anymore. Medical sites = good. Personal sites/blogs= bad. One of the clearest for me was http://congenital-heart-defects.co.uk/hypoplasticheartsyndrome.aspx
The next morning I called Brian's Dad, Dr. David Hammons, retired Kaiser ER doc and medical patriarch extraordinaire. He was familiar with HLHS and decided to put in a call to his Kaiser friend in San Jose, who is a pediatric cardiologist. I mentioned to Dr. Dad (as he will now be referred to) that in my research, I had come across a fetal intervention that is sometimes done in cases of HLHS. It is new, relatively unknown, and practiced in a very small number of places in the world, let alone the U.S. The pioneers of the procedure were located at Children's Hospital of Boston. I asked Dr. Dad to mention it to his colleague, and see if he thought we were candidates for the intervention. He did so, and learned in the process that his Kaiser colleague was college roommates with a doctor from CHBoston who actually diagnoses/performs the intervention. In a matter of a day, my echocardiogram was off to Boston to be evaluated by world class specialists, to see if we were candidates for the procedure. That began a day of monumental gratitude for us.
We knew the intervention was a long-shot. But it got us thinking about all the things that we had to be grateful for, most especially, the support and knowledge of family members. We are grateful to live in a time when congenital heart diseases like this one can even be diagnosed- 30 yrs. ago that was not the case. We are also lucky to get a diagnosis in utero, many parents don't even get that now and give birth, only to find their baby is immediately sick and requires surgery. We are grateful to live so close to one of the best Children's Hospitals in the country, where the required procedures are regularly performed. Many people have to move to live by a treatment center, or spend enormous amounts of money on travel expenses. We are grateful to have health insurance. We are grateful to be a part of an amazing community of family, friends and church. We know we can count on them to get us through the coming days. A sense of gratitude has been the number one factor in dealing with the emotions that have rolled through our home like a freight train during the first week. We have felt the prayers that have been offered on our behalf, and it has made all the difference.
On July 13, I received a call from Dr. Marx at Children's Hospital of Boston. I was amazed that he took the time to call me, and floored at how kind and caring the conversation was. He did not think we were candidates for the intervention, because baby's heart was in good condition. He said, in fact, that he and his colleague did not think that the heart was "moving towards hypoplastic left heart syndrome" and that they felt the more likely problem would end up being a coarctation of the aorta. Suddenly, I found myself with a second opinion, one I had not been seeking, one that differed from the first. He had discussed his findings with Dr. Jue (Children's Hospital here) and Dr. Jue bumped my next appt. to a week instead of a month. A few days later, we met with Dr. Turosi (who referred me to Children's) and went over everything we had learned. He looked at the echo and seemed to think that the diagnosis could go either way, depending on the growth that may or may not take place in the left side of the heart.
So, tomorrow I return to Children's to have another echocardiogram. I'm approaching this appt. with low expectations, after all, how much growth can you see in one week in a heart the size of a grape. Children's will continue treating us as if the baby has HLHS, and we, of course, have great hope that we will see a change in diagnosis over the next few weeks/months to Coarctation of the Aorta. The treatment for HLHS is a series of 3 open heart surgeries that convert baby's heart from a four chamber organ to a two chamber organ. The treatment for CoA is to snip out the narrowed part of the aorta and sew the remaining parts back together. Needless to say, the difference between the two resulting qualities of life is huge.
We are overwhelmed with gratitude for the loving messages and help that we have received so far. Although the purpose of this blog is for me, personally, to have a record of all the events surrounding baby's heart condition, any and all are welcome to follow his journey, learn, and grow along with our family. We have decided, as many heart parents do, to give baby his name now. This makes the journey more personal to us, and easier for all the medical people involved as well.
Emmett Dean Hammons, we await your arrival with more emotions than we would have thought possible. Above all, we have faith that God will carry you in his hand throughout the next year, and our family along with you.
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