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.
Sunday, October 30, 2011
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.....
Subscribe to:
Comments (Atom)