Download a PDF of Nate's email here.
Showing posts with label Emails. Show all posts
Showing posts with label Emails. Show all posts
Nate's Journey in Email
Nate's journey was journaled in a sequence of email updates, going all the way back to August of 2007. We invite you to download the PDF below and read through his story, or just scroll down.
August 8, 2007
I wanted to let you all know that we will be adding a 7th family member. Baby #5 is due the end of March!
(Anticipated) FAQ'S - Frequently asked questions
Are you crazy?
Yes, absolutely, without a doubt.
What were you thinking?
Actually, we've been thinking about this for almost 3 years. After I had the twins I completely expected to have that "done" feeling, but I didn't. Driving home from the hospital, Erik commented that we still had 2 seats in the Suburban and we both just felt like someone was missing. We decided to wait 3 years and then make a final decision. I spent much of that time praying that this desire would go away. 5 kids is a crazy thought! But it never did. I just always felt like this was some sort of calling from God and that I would forever regret the decision if we closed the door. So, in June we decided to open the door and let God decide on what family he wanted us to have. We DEFINITELY weren't trying but now we weren't preventing. With all of our other kids, it took a long time and a lot of effort for us to get pregnant. So, we were SHOCKED to discover that we were pregnant 1 month later. We really feel that this was God's plan for us.
Are you sure that there's only 1?
Yes, we had an ultrasound and there is only 1 heartbeat (thank goodness)!
Are you freaking out?
Yes, a little bit. It's 5 kids! But when we told Shayna she started crying and said that God answered her prayer because she had been praying for a baby. That helps ease the shock a little.
Will you ever leave the house again?
I have to. I have 4 kids in school, soccer, gymnastics, Girl Scouts etc. Hopefully this kid will be easy going because it's going to be carted around a lot.
Do you have the "DONE" feeling yet?
Yes, absolutely. The minute the pee stick was positive!
Hope you're all having a great Summer and I hope to see you soon!
Love, Trisha (your crazy friend with 5 kids)
(Anticipated) FAQ'S - Frequently asked questions
Are you crazy?
Yes, absolutely, without a doubt.
What were you thinking?
Actually, we've been thinking about this for almost 3 years. After I had the twins I completely expected to have that "done" feeling, but I didn't. Driving home from the hospital, Erik commented that we still had 2 seats in the Suburban and we both just felt like someone was missing. We decided to wait 3 years and then make a final decision. I spent much of that time praying that this desire would go away. 5 kids is a crazy thought! But it never did. I just always felt like this was some sort of calling from God and that I would forever regret the decision if we closed the door. So, in June we decided to open the door and let God decide on what family he wanted us to have. We DEFINITELY weren't trying but now we weren't preventing. With all of our other kids, it took a long time and a lot of effort for us to get pregnant. So, we were SHOCKED to discover that we were pregnant 1 month later. We really feel that this was God's plan for us.
Are you sure that there's only 1?
Yes, we had an ultrasound and there is only 1 heartbeat (thank goodness)!
Are you freaking out?
Yes, a little bit. It's 5 kids! But when we told Shayna she started crying and said that God answered her prayer because she had been praying for a baby. That helps ease the shock a little.
Will you ever leave the house again?
I have to. I have 4 kids in school, soccer, gymnastics, Girl Scouts etc. Hopefully this kid will be easy going because it's going to be carted around a lot.
Do you have the "DONE" feeling yet?
Yes, absolutely. The minute the pee stick was positive!
Hope you're all having a great Summer and I hope to see you soon!
Love, Trisha (your crazy friend with 5 kids)
November 1, 2007
Family/Friends:
I know that email is not the most personal way to deliver this request, but it's difficult to talk about it--as you can imagine, and I wanted to get as many people praying ASAP.
Trisha and I just returned from the perinatologist for an ultrasound on the yet to be named Larson. She discovered a major heart defect which, if correctable, will require surgery after birth. There is a problem with the ventricles--there's only one instead of 2. Initial diagnosis is "Tetralogy of Fallot." We don't know much more than that, and we are lining up appointments with specialists to get a more definitive diagnosis/prognosis. Trisha will likely get an amniocentesis on Monday to check for genetic problems (this would mean a false negative from the blood work already done).
Please pray for a miracle healing. Pray that whatever the official diagnosis is, that it's correctable. Pray for our family--Shayna & Noah especially as they are old enough to know something is wrong. Also Trisha & me as we cope with this.
Also, feel free to forward this to others who you think would be willing to pray.
Thank you so much!
Erik
I know that email is not the most personal way to deliver this request, but it's difficult to talk about it--as you can imagine, and I wanted to get as many people praying ASAP.
Trisha and I just returned from the perinatologist for an ultrasound on the yet to be named Larson. She discovered a major heart defect which, if correctable, will require surgery after birth. There is a problem with the ventricles--there's only one instead of 2. Initial diagnosis is "Tetralogy of Fallot." We don't know much more than that, and we are lining up appointments with specialists to get a more definitive diagnosis/prognosis. Trisha will likely get an amniocentesis on Monday to check for genetic problems (this would mean a false negative from the blood work already done).
Please pray for a miracle healing. Pray that whatever the official diagnosis is, that it's correctable. Pray for our family--Shayna & Noah especially as they are old enough to know something is wrong. Also Trisha & me as we cope with this.
Also, feel free to forward this to others who you think would be willing to pray.
Thank you so much!
Erik
November 7, 2007
Family & friends:
Trisha and I want to thank you for your prayers and unbelievable support. This has been the hardest week of our life. Since we learned the newest Larson has a heart defect, we have been back to the doctor twice; once to the perinatologist for the amniocentesis, and once to the Cardiologist at CHOC for ultrasound. The amniocentesis result will confirm whether or not a genetic defect is present (1st trimester blood test was negative). Results are due next week. The cardiologist provided us with a diagnosis of "Tetrology of Fallot Pulmonary Atresia Ventricular Septal Defect." In english, the pulminary arteries are not visable on ultrasound (could be there--just too small to see now), the vessel from the right ventrical to the pulmonary artery is not there, and there is a defect in the septum which separates the right ventrical from the left. This is not a rock solid diagnosis, because the anatomy of the heart is so tiny right now. We are going back in early January for another ultrasound & hope to get a more definitive diagnosis. We were told that the most accurate diagnosis will come once the baby is delivered.
We are expected to have an otherwise normal pregnancy (closely monitored by perinatologist), and a normal delivery (c-section not required). We will likely deliver @ St. Joseph/CHOC in Orange sometime in March. The baby is expected to go directly to NICU for final diagnosis with possible heart surgery the first week. The baby is then expected to spend 2-4 weeks in the NICU before returning home. Repair for this condition will require multiple surgeries. The next surgery will likely be within the first year--probably 6-8 months. Travel to Stanford to a surgeon who specializes in this condition is expected. Along with several other anatomy elements to be repaired, this condition requires a "conduit," which is a tube with a valve in it. It will have to be replaced to keep up with the size of the heart. It will also have to be maintained if/when it calcifies. As for survival odds--we don't know yet. That depends almost entirely on the anatomy of the heart which cannot be seen as well in utero. The pending genetic test outcome will also drive the survival odds. This all sounds really negative, but there is hope! Our cardiologist says patients can lead a normal life after this type of repair. Also, the article below indicates, "In patients with operable pulmonary arteries, survival rates with satisfactory quality of life now reach 90%." The doctor at Stanford has had experience doing surgery where the pulmonary arteries are diminutive.
Please continue to pray for the baby, and for our family. Please pray for God to give us wisdom to make the right choices for doctors/hospitals.
With Love,
Erik & Trisha
Trisha and I want to thank you for your prayers and unbelievable support. This has been the hardest week of our life. Since we learned the newest Larson has a heart defect, we have been back to the doctor twice; once to the perinatologist for the amniocentesis, and once to the Cardiologist at CHOC for ultrasound. The amniocentesis result will confirm whether or not a genetic defect is present (1st trimester blood test was negative). Results are due next week. The cardiologist provided us with a diagnosis of "Tetrology of Fallot Pulmonary Atresia Ventricular Septal Defect." In english, the pulminary arteries are not visable on ultrasound (could be there--just too small to see now), the vessel from the right ventrical to the pulmonary artery is not there, and there is a defect in the septum which separates the right ventrical from the left. This is not a rock solid diagnosis, because the anatomy of the heart is so tiny right now. We are going back in early January for another ultrasound & hope to get a more definitive diagnosis. We were told that the most accurate diagnosis will come once the baby is delivered.
We are expected to have an otherwise normal pregnancy (closely monitored by perinatologist), and a normal delivery (c-section not required). We will likely deliver @ St. Joseph/CHOC in Orange sometime in March. The baby is expected to go directly to NICU for final diagnosis with possible heart surgery the first week. The baby is then expected to spend 2-4 weeks in the NICU before returning home. Repair for this condition will require multiple surgeries. The next surgery will likely be within the first year--probably 6-8 months. Travel to Stanford to a surgeon who specializes in this condition is expected. Along with several other anatomy elements to be repaired, this condition requires a "conduit," which is a tube with a valve in it. It will have to be replaced to keep up with the size of the heart. It will also have to be maintained if/when it calcifies. As for survival odds--we don't know yet. That depends almost entirely on the anatomy of the heart which cannot be seen as well in utero. The pending genetic test outcome will also drive the survival odds. This all sounds really negative, but there is hope! Our cardiologist says patients can lead a normal life after this type of repair. Also, the article below indicates, "In patients with operable pulmonary arteries, survival rates with satisfactory quality of life now reach 90%." The doctor at Stanford has had experience doing surgery where the pulmonary arteries are diminutive.
Please continue to pray for the baby, and for our family. Please pray for God to give us wisdom to make the right choices for doctors/hospitals.
With Love,
Erik & Trisha
November 27, 2007
Family & friends:
We wanted to keep you in the loop as developments happen. We got some good news yesterday on the genetic testing. The final test results came back normal. This is good news because genetic problems drive down the survival rates. No new news on the heart defect. We expect to have more information following the next series of scans to be done in early January.
Thank you all again for your support. Please continue to pray.
With Love, Erik & Trisha
We wanted to keep you in the loop as developments happen. We got some good news yesterday on the genetic testing. The final test results came back normal. This is good news because genetic problems drive down the survival rates. No new news on the heart defect. We expect to have more information following the next series of scans to be done in early January.
Thank you all again for your support. Please continue to pray.
With Love, Erik & Trisha
January 9, 2008
Dear Family and Friends,
We were waiting to send out another update until we had finalized some decisions and had more to report. It has since become obvious to us that we need support and prayer in making these decisions -- they are not coming easy to us. Since our last update, we've consulted with the surgeon at Stanford, had another set of electrocardiograms with the CHOC cardiologist and had multiple visits with our Perinatologist.
*Dr. Hanley (Stanford Cardiothoracic Surgeon)-* In mid Dec. we had a phone consultation with Dr. Hanley (a CD of our echo cardiogram and images were sent to him in Nov.). From our research and our Cardiologist's recommendations, Dr. Hanley appears to be the best surgeon for our particular heart defect. He has done over 400 similar surgeries (of significantly varying degrees) in the last 15 years and currently has a 90+% survival rate. He confirmed the diagnosis made by our Cardiologist (Tetrology of Fallot w/ Pulmonary Atresia) and said that based on the images, he did not feel that our baby had a pulmonary artery as well (something our Cardioligist suspected). This will not be confirmed until the baby is delivered. Once the baby is born, it will undergo a Cardiac Catheterization procedure in the first couple days of life. This involves putting the baby under anesthesia and inserting a material into the blood and running a catheter into the heart so that blood vessels can be identified accurately. If there is blood flow through the pulmonary artery (provides blood from the heart to the lungs) , surgery will need to be done within the first week to keep that vessel open (it naturally closes after birth). This surgeon believes in repairing the artery and the entire heart defect at the same time. Other surgeons believe that it's best to insert a shunt (a plastic part that keeps the artery open for blood flow) during the first week and then do another surgery several months later to repair the other defects. Dr. Hanley believes that there is a 10-15% chance that our baby will need surgery the first week. He believes that it is likely that our baby has collateral arteries (small arteries that the baby developed to compensate for the missing pulmonary artery). In this situation, he would stabilize the baby and send it home until the baby is 3-4 months old when the repair surgery would be optimal. Of course, if our Cardiologist determines that the baby is in distress, surgery could be done at any time during the first 4 months. Because of the collateral arteries, our repair surgery is extremely complicated. The surgeon has to connect the small collateral arteries together to make 1 functional pulmonary artery and then connect that to the heart and each lung. Then place a conduit between the Right Ventricle and this newly created vessel to the lungs, and patch the hole (VSD) between right and left ventricle. He classifies it as a 9 or 10 in severity/complexity out of a possible 10. During our consultation he informed us that it would be best to deliver the baby at Stanford so that if surgery is needed the first week (10-15% chance), so we would not need to transport a fragile newborn which can be more dangerous than the actual surgery.
*2nd echo cardiogram with Cardiologist -* We met with our cardiologist at CHOC again last week. At this time she still does not see any evidence of a pulmonary artery. Rather, she sees 3 small collateral arteries that appear to connect from the heart to the lungs. There could be other collaterals as well that are smaller and not visible (the more collaterals there are, the more complicated the repair is). There is a remote chance that there could also still be a pulmonary artery, however there is no evidence of that at this time. She informed us that we could still deliver at CHOC since surgery the first week is unlikely but the surgeon at CHOC is not qualified to perform our repair surgery. She referred us to another surgeon at Children's Hospital LA for a consultation. We are meeting with him on Jan. 21st.
*Perinatologist *- All of our regular appointments show that the baby is doing well in the womb and is growing accordingly (finally some good news). As of today, the baby is estimating a weight of over 3 pounds and all other organs appear to be fine. We will start fetal monitoring twice a week at 32 weeks and continue weekly ultrasounds to monitor growth and development.
We are currently in our 30th week. We need to decide on a hospital/surgeon ASAP. After our consultation with Dr. Hanley we felt that it made sense to deliver the baby at Stanford. However, since then, we've vacillated.
*The pros we've identified are:
* Dr. Hanley is the most qualified surgeon for our condition and we want our baby to be in the very best hands. * Lucile Packard Children's Hospital (Stanford) is the #11 children's hospital in the country and specializes in dealing with heart defects.
* The cons we've identified are:
* They want Trisha up at Stanford between 36-37 weeks of pregnancy - much sooner than we expected. She would likely travel up there with the twins and her mom. Erik would stay home with Shayna and Noah for a week or two until the due date got closer. They would likely induce at 39 weeks.
* The Ronald McDonald house that we planned on staying at (only $10 per night) will only accommodate a family of 4 and availability is not guaranteed. This means that we would need to rent a hotel room for at least part of our stay.
* We only have 1 family car and would need to rent a minivan for 3-4 weeks for Stanford.
* Based on the last echo cardiogram, surgery is not likely the first week so we would deliver the baby and return for surgery at a later date. We could deliver at CHOC or Children's Hospital LA which would be a lot less complicated logistically.
We've already switched to a PPO which is quite expensive but will allow us the freedom of choosing our doctors and hospitals. So the decision is truly ours. We don't want any of our decisions to be made from a financial standpoint. We would spend any amount of money necessary to save our baby's life. That being said, we don't want to use our resources unnecessarily. So, we would really appreciate it if anyone has connections that can help us out with our travel expenses should we decide to deliver at Stanford. If you know anyone at the following companies, please let us know:
/Airlines -/ Southwest and American have the most availability with flights from Orange County to San Jose. Erik will likely fly back and forth 1 or 2 times with Shayna and Noah to help keep their lives normal with school/sports. Since we aren't certain of any dates, we can't purchase tickets ahead of time at lower rates.
/Car Rental -/ we will likely need to rent a minivan for 3-4 weeks and would appreciate a reduced rate.
/Hotels -/ We would need to stay in a hotel for 3-4 weeks up at Stanford for delivery and again for the surgery likely this Summer.
*Decisions, Decisions... *
Our choices seem to be
1. Deliver at CHOC, and run the risk of immediate surgery being required (less than 15%)--which means transport to Stanford in an airborne NICU. If there is no need for immediate surgery--we go home and travel to Stanford sometime in the first 3-4 months for surgery. 2. Deliver at CHLA, and run the risk of immediate surgery being required--maybe by the CHLA surgeon--maybe transport to Stanford--depending on what he has to say when we meet with him on the 21st of this month.
3. Deliver at LPCH, and incur the logistic challenge--this seems to be the best scenario for the baby if surgery is required right away.
Sorry for the long/detailed email. We wanted to share our experiences so that you can pray with knowledge. Please pray for direction as there are so many options and unknowns. And please continue to pray for our baby. We have a very long and difficult road ahead of us.
With love,
Erik & Trisha
We were waiting to send out another update until we had finalized some decisions and had more to report. It has since become obvious to us that we need support and prayer in making these decisions -- they are not coming easy to us. Since our last update, we've consulted with the surgeon at Stanford, had another set of electrocardiograms with the CHOC cardiologist and had multiple visits with our Perinatologist.
*Dr. Hanley (Stanford Cardiothoracic Surgeon)-* In mid Dec. we had a phone consultation with Dr. Hanley (a CD of our echo cardiogram and images were sent to him in Nov.). From our research and our Cardiologist's recommendations, Dr. Hanley appears to be the best surgeon for our particular heart defect. He has done over 400 similar surgeries (of significantly varying degrees) in the last 15 years and currently has a 90+% survival rate. He confirmed the diagnosis made by our Cardiologist (Tetrology of Fallot w/ Pulmonary Atresia) and said that based on the images, he did not feel that our baby had a pulmonary artery as well (something our Cardioligist suspected). This will not be confirmed until the baby is delivered. Once the baby is born, it will undergo a Cardiac Catheterization procedure in the first couple days of life. This involves putting the baby under anesthesia and inserting a material into the blood and running a catheter into the heart so that blood vessels can be identified accurately. If there is blood flow through the pulmonary artery (provides blood from the heart to the lungs) , surgery will need to be done within the first week to keep that vessel open (it naturally closes after birth). This surgeon believes in repairing the artery and the entire heart defect at the same time. Other surgeons believe that it's best to insert a shunt (a plastic part that keeps the artery open for blood flow) during the first week and then do another surgery several months later to repair the other defects. Dr. Hanley believes that there is a 10-15% chance that our baby will need surgery the first week. He believes that it is likely that our baby has collateral arteries (small arteries that the baby developed to compensate for the missing pulmonary artery). In this situation, he would stabilize the baby and send it home until the baby is 3-4 months old when the repair surgery would be optimal. Of course, if our Cardiologist determines that the baby is in distress, surgery could be done at any time during the first 4 months. Because of the collateral arteries, our repair surgery is extremely complicated. The surgeon has to connect the small collateral arteries together to make 1 functional pulmonary artery and then connect that to the heart and each lung. Then place a conduit between the Right Ventricle and this newly created vessel to the lungs, and patch the hole (VSD) between right and left ventricle. He classifies it as a 9 or 10 in severity/complexity out of a possible 10. During our consultation he informed us that it would be best to deliver the baby at Stanford so that if surgery is needed the first week (10-15% chance), so we would not need to transport a fragile newborn which can be more dangerous than the actual surgery.
*2nd echo cardiogram with Cardiologist -* We met with our cardiologist at CHOC again last week. At this time she still does not see any evidence of a pulmonary artery. Rather, she sees 3 small collateral arteries that appear to connect from the heart to the lungs. There could be other collaterals as well that are smaller and not visible (the more collaterals there are, the more complicated the repair is). There is a remote chance that there could also still be a pulmonary artery, however there is no evidence of that at this time. She informed us that we could still deliver at CHOC since surgery the first week is unlikely but the surgeon at CHOC is not qualified to perform our repair surgery. She referred us to another surgeon at Children's Hospital LA for a consultation. We are meeting with him on Jan. 21st.
*Perinatologist *- All of our regular appointments show that the baby is doing well in the womb and is growing accordingly (finally some good news). As of today, the baby is estimating a weight of over 3 pounds and all other organs appear to be fine. We will start fetal monitoring twice a week at 32 weeks and continue weekly ultrasounds to monitor growth and development.
We are currently in our 30th week. We need to decide on a hospital/surgeon ASAP. After our consultation with Dr. Hanley we felt that it made sense to deliver the baby at Stanford. However, since then, we've vacillated.
*The pros we've identified are:
* Dr. Hanley is the most qualified surgeon for our condition and we want our baby to be in the very best hands. * Lucile Packard Children's Hospital (Stanford) is the #11 children's hospital in the country and specializes in dealing with heart defects.
* The cons we've identified are:
* They want Trisha up at Stanford between 36-37 weeks of pregnancy - much sooner than we expected. She would likely travel up there with the twins and her mom. Erik would stay home with Shayna and Noah for a week or two until the due date got closer. They would likely induce at 39 weeks.
* The Ronald McDonald house that we planned on staying at (only $10 per night) will only accommodate a family of 4 and availability is not guaranteed. This means that we would need to rent a hotel room for at least part of our stay.
* We only have 1 family car and would need to rent a minivan for 3-4 weeks for Stanford.
* Based on the last echo cardiogram, surgery is not likely the first week so we would deliver the baby and return for surgery at a later date. We could deliver at CHOC or Children's Hospital LA which would be a lot less complicated logistically.
We've already switched to a PPO which is quite expensive but will allow us the freedom of choosing our doctors and hospitals. So the decision is truly ours. We don't want any of our decisions to be made from a financial standpoint. We would spend any amount of money necessary to save our baby's life. That being said, we don't want to use our resources unnecessarily. So, we would really appreciate it if anyone has connections that can help us out with our travel expenses should we decide to deliver at Stanford. If you know anyone at the following companies, please let us know:
/Airlines -/ Southwest and American have the most availability with flights from Orange County to San Jose. Erik will likely fly back and forth 1 or 2 times with Shayna and Noah to help keep their lives normal with school/sports. Since we aren't certain of any dates, we can't purchase tickets ahead of time at lower rates.
/Car Rental -/ we will likely need to rent a minivan for 3-4 weeks and would appreciate a reduced rate.
/Hotels -/ We would need to stay in a hotel for 3-4 weeks up at Stanford for delivery and again for the surgery likely this Summer.
*Decisions, Decisions... *
Our choices seem to be
1. Deliver at CHOC, and run the risk of immediate surgery being required (less than 15%)--which means transport to Stanford in an airborne NICU. If there is no need for immediate surgery--we go home and travel to Stanford sometime in the first 3-4 months for surgery. 2. Deliver at CHLA, and run the risk of immediate surgery being required--maybe by the CHLA surgeon--maybe transport to Stanford--depending on what he has to say when we meet with him on the 21st of this month.
3. Deliver at LPCH, and incur the logistic challenge--this seems to be the best scenario for the baby if surgery is required right away.
Sorry for the long/detailed email. We wanted to share our experiences so that you can pray with knowledge. Please pray for direction as there are so many options and unknowns. And please continue to pray for our baby. We have a very long and difficult road ahead of us.
With love,
Erik & Trisha
February 7, 2008
Dear Friends & Family-
First of all, thanks all of you for your prayers and offers to help. We really appreciate you and are comforted by your outpouring of love.
After much prayer and consideration, we have decided to deliver the baby near Children's Hospital L.A.(CHLA). We'll give you more details on our rationale as well as what we expect to happen with the delivery. We are providing this information because many of you have asked about it. would like to know and it's difficult for us to talk about time and time again. However, we apologize to those that just want an update without all of the details.
More Details:
First of all, we have been told that there are six surgeons in the US who are able to perform our surgery. Arguably, the best two are on the West Coast and we have met with both of them. We met Dr. Starnes at CHLA two weeks ago and toured the hospital. Dr. Starnes is a world renowned surgeon and is extremely qualified. While he does numerous complicated heart surgeries every week, he has performed less than 100 of our particular condition (Dr. Hanley at Stanford has done about 400). Starnes also has a very different opinion on how to repair our defect. He believes in doing the surgery in 2-3 stages as opposed to Hanley who does the entire repair at once. He agreed with our other doctors/surgeons that surgery is not likely the first week because there is no evidence of a pulmonary artery (/even though we would likely need immediate surgery, it would be much less complicated and our odds would be better if there were a pulmonary artery/). Given all we have learned & considering the impact on our family, we've decided to deliver at near CHLA. If, by chance, we need surgery the first week, Starnes is an expert and can perform the surgery. In addition, CHLA has an excellent cardiac unit and we are very comfortable with the staff. We still plan on travel to Palo Alto for repair surgery at Stanford with Dr. Hanley at a later date.
We will be delivering the baby next door to CHLA at Hollywood Presbyterian Hospital. We are meeting with a team of specialists in a couple of weeks that will orchestrate delivery and transfer the baby across the parking lot to CHLA. As of now, the plan is to induce labor between March 3rd & 10th (@38 weeks). Once born, the neonatal team will take the baby to the NICU for a few hours until it is stable enough to be transferred next door. The baby will be put on special medication as a precaution that requires a ventilator, IV fluids (no food for several days), and hooked up to several other tubes/machines (we'll spare you some detail). Erik can/will be with the baby the entire time. As soon as possible, a transfer team will take the baby to CHLA where it will go directly to the Cardiac Intensive Care Unit (CICU). There, the cardiac specialists will evaluate the baby and address any initial concerns. Erik will remain with the baby and Trisha is allowed to join as soon as she is able. They plan on performing a Cardiac Catheritization under anesthesia probably day 3 or 4. It will take several hours and there is a risk because the baby is a newborn and is already sick. At that point, we will meet with the surgeon and know exactly what the diagnosis/prognosis is. We have been told that there are 3 likely scenarios:
1. WORST CASE - There is no pulmonary artery and the collaterals are
not sufficient enough to repair. This is our worst nightmare as
surgery would not be an option and no repair is available.
2. BEST CASE- There is a pulmonary artery and they need to put in a
shunt to keep it open (temporary repair surgery performed at
CHLA). We would schedule the full-repair surgery for 2-8 months
later at Stanford.
3. MOST LIKELY-There is no pulmonary artery but the collaterals are
sufficient to repair in 2-6 months. The baby would be allowed to
come home after it's stable. It may require a feeding tube as
many babies with this condition have to use all their energy to
keep the blood pumping through their body. They're simply too
tired to suck and swallow. Others do fine and are able to breastfeed.
We are not planning on allowing visitors at the hospital. We will update via email as the situation develops. Erik can check email from his phone if you would like to contact us but we will be focused on our family and may not be able to return calls/emails. We will be sleeping in the CICU but will have a room at the Ronald McDonald House next door to shower/change. The kids will be at our house with family and we will bring them up to the Ronald McDonald House every 2 or 3 days so we can take turns spending time with them. The twins have never been away from us so this will be hard for them.
*Prayer Requests*
1. Pray that Trisha does not go into labor early.
2. Pray that the delivery goes smoothly.
3. Pray for the Cardiac Catheritization that requires anesthesia.
4. Pray that the baby has a pulmonary artery or substantial collateral arteries that are repairable.
5. Pray that we are able to bring the baby home in good condition with a good prognosis.
6. Pray for Shayna, Noah, Kyla & Kaylee. Their world is going to get ROCKED! Pray for comfort, understanding, and love during this difficult time.
7. Pray for Erik and Trisha--that we can hold it together with all of the chaos ensuing.
Thanks to all of you for your prayers and support. We appreciate that many of you want to help but there is simply nothing to do at this point except pray. We will update again once an induction date has been set and then from the hospital as the situation develops.
With love,
Erik & Trisha
First of all, thanks all of you for your prayers and offers to help. We really appreciate you and are comforted by your outpouring of love.
After much prayer and consideration, we have decided to deliver the baby near Children's Hospital L.A.(CHLA). We'll give you more details on our rationale as well as what we expect to happen with the delivery. We are providing this information because many of you have asked about it. would like to know and it's difficult for us to talk about time and time again. However, we apologize to those that just want an update without all of the details.
More Details:
First of all, we have been told that there are six surgeons in the US who are able to perform our surgery. Arguably, the best two are on the West Coast and we have met with both of them. We met Dr. Starnes at CHLA two weeks ago and toured the hospital. Dr. Starnes is a world renowned surgeon and is extremely qualified. While he does numerous complicated heart surgeries every week, he has performed less than 100 of our particular condition (Dr. Hanley at Stanford has done about 400). Starnes also has a very different opinion on how to repair our defect. He believes in doing the surgery in 2-3 stages as opposed to Hanley who does the entire repair at once. He agreed with our other doctors/surgeons that surgery is not likely the first week because there is no evidence of a pulmonary artery (/even though we would likely need immediate surgery, it would be much less complicated and our odds would be better if there were a pulmonary artery/). Given all we have learned & considering the impact on our family, we've decided to deliver at near CHLA. If, by chance, we need surgery the first week, Starnes is an expert and can perform the surgery. In addition, CHLA has an excellent cardiac unit and we are very comfortable with the staff. We still plan on travel to Palo Alto for repair surgery at Stanford with Dr. Hanley at a later date.
We will be delivering the baby next door to CHLA at Hollywood Presbyterian Hospital. We are meeting with a team of specialists in a couple of weeks that will orchestrate delivery and transfer the baby across the parking lot to CHLA. As of now, the plan is to induce labor between March 3rd & 10th (@38 weeks). Once born, the neonatal team will take the baby to the NICU for a few hours until it is stable enough to be transferred next door. The baby will be put on special medication as a precaution that requires a ventilator, IV fluids (no food for several days), and hooked up to several other tubes/machines (we'll spare you some detail). Erik can/will be with the baby the entire time. As soon as possible, a transfer team will take the baby to CHLA where it will go directly to the Cardiac Intensive Care Unit (CICU). There, the cardiac specialists will evaluate the baby and address any initial concerns. Erik will remain with the baby and Trisha is allowed to join as soon as she is able. They plan on performing a Cardiac Catheritization under anesthesia probably day 3 or 4. It will take several hours and there is a risk because the baby is a newborn and is already sick. At that point, we will meet with the surgeon and know exactly what the diagnosis/prognosis is. We have been told that there are 3 likely scenarios:
1. WORST CASE - There is no pulmonary artery and the collaterals are
not sufficient enough to repair. This is our worst nightmare as
surgery would not be an option and no repair is available.
2. BEST CASE- There is a pulmonary artery and they need to put in a
shunt to keep it open (temporary repair surgery performed at
CHLA). We would schedule the full-repair surgery for 2-8 months
later at Stanford.
3. MOST LIKELY-There is no pulmonary artery but the collaterals are
sufficient to repair in 2-6 months. The baby would be allowed to
come home after it's stable. It may require a feeding tube as
many babies with this condition have to use all their energy to
keep the blood pumping through their body. They're simply too
tired to suck and swallow. Others do fine and are able to breastfeed.
We are not planning on allowing visitors at the hospital. We will update via email as the situation develops. Erik can check email from his phone if you would like to contact us but we will be focused on our family and may not be able to return calls/emails. We will be sleeping in the CICU but will have a room at the Ronald McDonald House next door to shower/change. The kids will be at our house with family and we will bring them up to the Ronald McDonald House every 2 or 3 days so we can take turns spending time with them. The twins have never been away from us so this will be hard for them.
*Prayer Requests*
1. Pray that Trisha does not go into labor early.
2. Pray that the delivery goes smoothly.
3. Pray for the Cardiac Catheritization that requires anesthesia.
4. Pray that the baby has a pulmonary artery or substantial collateral arteries that are repairable.
5. Pray that we are able to bring the baby home in good condition with a good prognosis.
6. Pray for Shayna, Noah, Kyla & Kaylee. Their world is going to get ROCKED! Pray for comfort, understanding, and love during this difficult time.
7. Pray for Erik and Trisha--that we can hold it together with all of the chaos ensuing.
Thanks to all of you for your prayers and support. We appreciate that many of you want to help but there is simply nothing to do at this point except pray. We will update again once an induction date has been set and then from the hospital as the situation develops.
With love,
Erik & Trisha
February 21, 2008
Dear Friends & Family:
We met with the team of specialists at Hollywood Presbyterian Hospital this week that will be delivering our baby. At that time, we actually received good news. During our echo cardiograham, they were able to identify a pulmonary artery on our baby. They won't know how functional it is until after the catheterization procedure (they also see collaterals which suggests that it's very small) but the fact that it's there improves our surgical survival odds and baby's future quality of life prognosis. Based on this finding, they have already scheduled surgery for our baby to insert a temporary shunt. If the cardiac catheterization does not show blood flow through that artery, or the presence of a ductus arteriosus (basically a connection that allows blood to flow from the heart to the lungs), they will cancel it and wait to surgically repair the heart once the baby is a little bigger. As of now, the following are the schedule of dates targeted:
*Tuesday, March 4th* - Check into Hollywood Presbyterian for induction late evening.
*Wednesday, March 5th* - Labor induction and delivery of baby in early morning hours (baby to be transferred next door to CHLA once stable as previously described in last email).
*Thursday, March 6th* - Cardiac Catheterization Procedure (a little earlier than we wanted but this is the date that works best with the hospital and Cardiologists).
*Monday, March 10th* - SURGERY - Open heart surgery performed by Dr. Starnes to insert a temporary shunt in the pulmonary artery to maintain blood flow until the baby is bigger and the heart defect can be repaired.
We will update again if any of these dates change. Otherwise, we will email from the hospital as the situation develops. Once again, thanks to all of you for your prayers and support.
With love,
Erik & Trisha
PRAYER REQUESTS_
Pray that Trisha does not go into labor early./
Pray that the delivery goes smoothly and a c-section is NOT needed./
Pray that the baby is in good condition upon delivery (there's a HUGE degree of variance possible)./
Pray that the Cardiac Catherterization procedure on March 6th is successful and that the pulmonary artery is viable./
Pray that the surgery on March 10th (if needed) is successful./
Pray for Shayna, Noah, Kyla and Kaylee during the next few weeks. Pray for comfort, love and understanding./
Pray for Erik & Trisha. This is the most difficult time of our life. Pray for strength and comfort./
We met with the team of specialists at Hollywood Presbyterian Hospital this week that will be delivering our baby. At that time, we actually received good news. During our echo cardiograham, they were able to identify a pulmonary artery on our baby. They won't know how functional it is until after the catheterization procedure (they also see collaterals which suggests that it's very small) but the fact that it's there improves our surgical survival odds and baby's future quality of life prognosis. Based on this finding, they have already scheduled surgery for our baby to insert a temporary shunt. If the cardiac catheterization does not show blood flow through that artery, or the presence of a ductus arteriosus (basically a connection that allows blood to flow from the heart to the lungs), they will cancel it and wait to surgically repair the heart once the baby is a little bigger. As of now, the following are the schedule of dates targeted:
*Tuesday, March 4th* - Check into Hollywood Presbyterian for induction late evening.
*Wednesday, March 5th* - Labor induction and delivery of baby in early morning hours (baby to be transferred next door to CHLA once stable as previously described in last email).
*Thursday, March 6th* - Cardiac Catheterization Procedure (a little earlier than we wanted but this is the date that works best with the hospital and Cardiologists).
*Monday, March 10th* - SURGERY - Open heart surgery performed by Dr. Starnes to insert a temporary shunt in the pulmonary artery to maintain blood flow until the baby is bigger and the heart defect can be repaired.
We will update again if any of these dates change. Otherwise, we will email from the hospital as the situation develops. Once again, thanks to all of you for your prayers and support.
With love,
Erik & Trisha
PRAYER REQUESTS_
Pray that Trisha does not go into labor early./
Pray that the delivery goes smoothly and a c-section is NOT needed./
Pray that the baby is in good condition upon delivery (there's a HUGE degree of variance possible)./
Pray that the Cardiac Catherterization procedure on March 6th is successful and that the pulmonary artery is viable./
Pray that the surgery on March 10th (if needed) is successful./
Pray for Shayna, Noah, Kyla and Kaylee during the next few weeks. Pray for comfort, love and understanding./
Pray for Erik & Trisha. This is the most difficult time of our life. Pray for strength and comfort./
March 5, 2008
Family/Friends -
Induction started 4am today... no significant progress yet. Should be
born
today. Will update later after baby is born--when I can.
Pray for a cooperative baby (no C-section).
Thanks to everyone!
Erik & Trisha
Induction started 4am today... no significant progress yet. Should be
born
today. Will update later after baby is born--when I can.
Pray for a cooperative baby (no C-section).
Thanks to everyone!
Erik & Trisha
March 6, 2008
Everyone-
After a long, frustrating, complicated 18 hours of labor, BB Larson was born at 10:29pm last night--barely avoiding a c-section.. Weighing at a whopping 7#9oz, the baby came out kicking, & screaming. We are waiting to announce the sex until after we tell the kids tomorrow--we want them to be the first to know.
Baby is in the cardiothoracic ICU at CHLA after being brought 80 yards by ambulance from Hollywood Presbytarian hospital. Trisha is feeling great. We're very busy with lots of tests today & will update tomorrow with some results. We should have a name picked by then. Thanks all!
Love, Erik & Trisha
After a long, frustrating, complicated 18 hours of labor, BB Larson was born at 10:29pm last night--barely avoiding a c-section.. Weighing at a whopping 7#9oz, the baby came out kicking, & screaming. We are waiting to announce the sex until after we tell the kids tomorrow--we want them to be the first to know.
Baby is in the cardiothoracic ICU at CHLA after being brought 80 yards by ambulance from Hollywood Presbytarian hospital. Trisha is feeling great. We're very busy with lots of tests today & will update tomorrow with some results. We should have a name picked by then. Thanks all!
Love, Erik & Trisha
March 7, 2008
Please join us in celebrating the arrival of Nathan Ryan Larson! Born 3/5/2008 at 10:29pm, weighing in at 7lbs 9oz & 21". He met his brother and sisters this morning.
Nathan is stable, and receiving excellent care in the CTICU at CHLA. He has more tests scheduled today which will determine what repairs need to be made. We'll send out another update once we know more.
Thanks for all your prayers and continued support!
Erik & Trisha
Nathan is stable, and receiving excellent care in the CTICU at CHLA. He has more tests scheduled today which will determine what repairs need to be made. We'll send out another update once we know more.
Thanks for all your prayers and continued support!
Erik & Trisha
March 9, 2008
Dear Family and Friends -
Above is a picture of Nathan. His name means gift from God.
They removed the ventilator on Saturday, revealing his cute little face. We were able to hold him for the first time! Trisha waited until she was in physical pain to give him up after three hours of holding him. He is a bit puffy from the fluids used to manage his blood pressure, but that will return to normal after his surgery.
Friday he underwent a cardiac catheterrization. This is a catheter placed inside the heart under x-ray to map all anatomy. Our prayers for a pulmonary artery were answered! The artery, though imperfect and small, looks to be viable, and feeds all 15 sections of the lungs. This news changed the earlier diagnosis--dropping pulmonary atresia. Additionally, the vessel/valve which connect the right ventricle to the pulmonary artery (which we were told didn't exist) was clearly visible. Repair/replacement of this section will be needed in a few months as it is malformed.
His surgery is scheduled for Monday morning at 7am to place a shunt between the aorta and pulmonary artery. This increases blood flow in the proper direction, and should result in growth of the pulmonary artery. They may also close off abnormal vessels (collaterals) which route blood in the wrong direction.
The surgery and the 48 hours following surgery are critical, so please continue your prayers.
We will try to update tomorrow sometime after surgery.
Erik & Trisha
March 10, 2008
Baby Nate is getting closed now. The surgeon didn't put a shunt in, but modified the vessel from the rt ventricle to the pulmonary artery. This is great news as it allow for more uniform and normal blood flow which means a better chance for quality healing. Also less damage to the pulmonary artery. Also, he may be able to avoid an artificial conduit which means no need to replace an outgrown valve in the future. Nate will need at least one more surgery to close the hole between the ventricles and complete the repair started today. The collaterals were left open for now. These can be closed in the cathetarization lab later.
Please keep praying as the days after surgery are VERY critical.
Thank you for your prayers, they are working!!
Love Erik and Trisha
Please keep praying as the days after surgery are VERY critical.
Thank you for your prayers, they are working!!
Love Erik and Trisha
March 11, 2008
Family/Friends -
Nate's 1st full day after surgery was tough. He is sedated, & still on a ventilator. His vitals are, for the most part, steadily improving. He had a brief setback after they pulled out his chest tube. Apparently it's very painful & this caused a spike in his pulse and blood pressure. The plan is to slowly get him off the ventilator--we hope by Thursday--then reduce/eliminate as many of the other medications as possible while keeping all his vitals in check.
Please keep praying for his recovery, and our sanity.
Erik & Trisha
Nate's 1st full day after surgery was tough. He is sedated, & still on a ventilator. His vitals are, for the most part, steadily improving. He had a brief setback after they pulled out his chest tube. Apparently it's very painful & this caused a spike in his pulse and blood pressure. The plan is to slowly get him off the ventilator--we hope by Thursday--then reduce/eliminate as many of the other medications as possible while keeping all his vitals in check.
Please keep praying for his recovery, and our sanity.
Erik & Trisha
March 13, 2008
Quick update - Nate is expected to come off the ventilator today. He had a good day yesterday & is making steady progress.
Erik & Trisha
Erik & Trisha
March 13, 2008
Family/Friends -
Today did not go as expected. We feel like we are on a roller coaster and it's very obvious that we are not in control. The doctor's were hopeful that Nate would be ready to breathe on his own but when they tested him, he wasn't able. So, he did not come off the ventilator. We were very disappointed. Mostly because we just want to hold him. He gets another shot tomorrow morning, so please pray that he rallies and is ready to take this critical step. Thank you so much for your support!
Erik & Trisha
Today did not go as expected. We feel like we are on a roller coaster and it's very obvious that we are not in control. The doctor's were hopeful that Nate would be ready to breathe on his own but when they tested him, he wasn't able. So, he did not come off the ventilator. We were very disappointed. Mostly because we just want to hold him. He gets another shot tomorrow morning, so please pray that he rallies and is ready to take this critical step. Thank you so much for your support!
Erik & Trisha
March 14, 2008
Family/Friends -
Nate did not manage to get off the ventilator again today. There are several factors contributing to this being difficult--mostly he needs extra fluids to bolster his blood pressure, but these fluids make it difficult to maintain the ability to breathe on his own.
He'll try again tomorrow, so please pray that he is ready soon--if not off by next week he may need more changes to his anatomy (surgery or surgical procedure) before he will be able to breathe off the ventilator.
Also, please pray for his kidney health. Minor by comparison to everything else, but potentially another procedure to endure.
Thanks for all your feedback and words of support--they've been helpful.
Erik & Trisha
Nate did not manage to get off the ventilator again today. There are several factors contributing to this being difficult--mostly he needs extra fluids to bolster his blood pressure, but these fluids make it difficult to maintain the ability to breathe on his own.
He'll try again tomorrow, so please pray that he is ready soon--if not off by next week he may need more changes to his anatomy (surgery or surgical procedure) before he will be able to breathe off the ventilator.
Also, please pray for his kidney health. Minor by comparison to everything else, but potentially another procedure to endure.
Thanks for all your feedback and words of support--they've been helpful.
Erik & Trisha
March 15, 2008
Friends/Family -
Nathan came very close to getting off the ventilator (extubated) today. He was taken down to minimal settings where he breathes on his own with the tube in, but after a time, his blood gases dropped too low to continue. He was a close call, and we are hopeful that tomorrow he will do better.
Please pray that Nate will be strong enough to take this step tomorrow so he can get on with the next steps toward going home. Also, please pray for us, and the kids, as this was day 11 and everyone is wearing thin.
Thanks for everything!
Nathan came very close to getting off the ventilator (extubated) today. He was taken down to minimal settings where he breathes on his own with the tube in, but after a time, his blood gases dropped too low to continue. He was a close call, and we are hopeful that tomorrow he will do better.
Please pray that Nate will be strong enough to take this step tomorrow so he can get on with the next steps toward going home. Also, please pray for us, and the kids, as this was day 11 and everyone is wearing thin.
Thanks for everything!
March 16, 2008
Family/Friends -
Not yet... seems to be the theme over the weekend. Nathan couldn't muster the right scores on his blood gas tests to get off the ventilator. He'll try again tomorrow--please pray that he gets past this critical step as soon as possible.
Thanks for your support!
Erik & Trisha
Not yet... seems to be the theme over the weekend. Nathan couldn't muster the right scores on his blood gas tests to get off the ventilator. He'll try again tomorrow--please pray that he gets past this critical step as soon as possible.
Thanks for your support!
Erik & Trisha
March 17, 2008
Finally,we have good news to report. They pulled Nate's breathing tube almost exactly at 2:30 today. The first hour was pretty stressful, but after that, he figured it out and did really well. We just left the hospital -- he has been sleeping for the last 5 hours. Please continue to pray for him as there is still the possibility that his body will get tired and he will not be able to breathe without the help of the ventilator.
Assuming that all goes well throughout the night, tomorrow they will try and get him to take the next step. They will begin to eliminate his IV heart medications (currently on 4) and attempt to teach him how to bottle feed. They tell us that teaching them to suck, swallow and breathe simultaneously can prove difficult. He's been sucking on a pacifier the last few hours which is a good sign so we're hopeful that he'll pick it up easily.
Please pray that he continues to progress so that we can get closer to coming home. We long for the day that we can all be together under one roof again.
Erik & Trisha
Assuming that all goes well throughout the night, tomorrow they will try and get him to take the next step. They will begin to eliminate his IV heart medications (currently on 4) and attempt to teach him how to bottle feed. They tell us that teaching them to suck, swallow and breathe simultaneously can prove difficult. He's been sucking on a pacifier the last few hours which is a good sign so we're hopeful that he'll pick it up easily.
Please pray that he continues to progress so that we can get closer to coming home. We long for the day that we can all be together under one roof again.
Erik & Trisha
Subscribe to:
Posts (Atom)
