On Thursday night after Lukas was born, before Lukas was even 24 hours old, we had our family pictures taken. The pictures turned out amazing despite the fact that it was a bit past Chelsea's bed time and she was melting down just minutes before.
We wanted to give a special thanks to Dave Ward for sharing his talent with us and for taking these amazing pictures.
Note: Click on the first picture to open all the pictures to a full-screen view.
Sunday, July 29, 2012
Thursday, July 26, 2012
Chelsea & Lukas
When Chelsea woke up on Friday morning after Lukas was born we decided it would be a fun little family moment. We put Lukas on Chelsea's bed to let them "play" together. Chelsea wanted "her camera" to take pictures, so of course we decided to capture the moment with a video camera. To me it seems like they are old friends, yet they had only been together for one day. What a beautiful moment and memory!
Enjoy this video!
Chelsea & Lukas 1080p from Jonathan Baker on Vimeo.
Sunday, July 8, 2012
Beautiful Slideshow - Created by Now I Lay Me Down To Sleep
!Kleenex ALERT!
These pictures are so precious to us. Julie, with Now I Lay Me Down To Sleep, came to the hospital to take these beautiful pictures. These pictures were taken just an hour and a half after Lukas was born.
Melissa looks so amazing in these pictures, when you consider what she just went through just an hour before. What an amazing mom!
http://shareitvideo.com/watch.php?v=241555793126151
These pictures are so precious to us. Julie, with Now I Lay Me Down To Sleep, came to the hospital to take these beautiful pictures. These pictures were taken just an hour and a half after Lukas was born.
Melissa looks so amazing in these pictures, when you consider what she just went through just an hour before. What an amazing mom!
http://shareitvideo.com/watch.php?v=241555793126151
Saturday, July 7, 2012
We love you Lukas!
Lukas Benjamin Baker passed away peacefully in our arms early this morning.
Thank you everyone who was able to visit and share the love he brought to this earth for his short life.
At this time we are not accepting visitors. We will announce funeral plans as they are made.
Please take a moment to cherish a life today on our behalf.
Thank you for all your love.
Jonathan, Melissa, Chelsea, and Lukas Baker
Thank you everyone who was able to visit and share the love he brought to this earth for his short life.
At this time we are not accepting visitors. We will announce funeral plans as they are made.
Please take a moment to cherish a life today on our behalf.
Thank you for all your love.
Jonathan, Melissa, Chelsea, and Lukas Baker
Thursday, July 5, 2012
Lukas Benjamin
It's a BOY!
We are so excited that Lukas Benjamin has arrived! It has been an emotional few months leading up to this point, but we are so glad he is finally here! We are humbled to receive such a wonderful spirit into our family. Our family will never be the same!
When: July 4th @ 8:03pm (just in time for fireworks!)
Weight: 6 lbs 13 oz
Length: 22 inches (just like his big sister.)
The delivery went well. Melissa was a champ and was able to deliver un-medicated. Melissa and Lukas are doing well. Thanks to the help of a wonderful medical staff, we were able to leave the hospital at 12:18am. As I write this post Melissa is sleeping in her own bed and loving it. We are accepting family visitors Thursday after 2pm and general visitors on Friday.
After having been told in February that our baby has HLHS, there was much soul searching, researching, crying, praying, and discussing. In the end we chose to bring this baby, where he will live a comfortable and peaceful life. We have been told that his life expectancy will be anywhere from 3 to 22 days. We will try to keep our blog updated with information on the baby's condition. However, our #1 focus will be spending time with the baby and visitors.
Once we get settled in we'd love visitors. We want to share this short and wonderful time with everyone that wants to visit. In order to maintain our toddler's napping schedule we only ask that no visitors arrive from 11am to 2pm. We are open to visitors at all other times. We plan on staying at home as much as possible, so feel free to stop by when it is convenient for you.
Here are some fun charts showing the distribution curves of his weight and height:
We are so excited that Lukas Benjamin has arrived! It has been an emotional few months leading up to this point, but we are so glad he is finally here! We are humbled to receive such a wonderful spirit into our family. Our family will never be the same!
When: July 4th @ 8:03pm (just in time for fireworks!)
Weight: 6 lbs 13 oz
Length: 22 inches (just like his big sister.)
The delivery went well. Melissa was a champ and was able to deliver un-medicated. Melissa and Lukas are doing well. Thanks to the help of a wonderful medical staff, we were able to leave the hospital at 12:18am. As I write this post Melissa is sleeping in her own bed and loving it. We are accepting family visitors Thursday after 2pm and general visitors on Friday.
After having been told in February that our baby has HLHS, there was much soul searching, researching, crying, praying, and discussing. In the end we chose to bring this baby, where he will live a comfortable and peaceful life. We have been told that his life expectancy will be anywhere from 3 to 22 days. We will try to keep our blog updated with information on the baby's condition. However, our #1 focus will be spending time with the baby and visitors.
Once we get settled in we'd love visitors. We want to share this short and wonderful time with everyone that wants to visit. In order to maintain our toddler's napping schedule we only ask that no visitors arrive from 11am to 2pm. We are open to visitors at all other times. We plan on staying at home as much as possible, so feel free to stop by when it is convenient for you.
Here are some fun charts showing the distribution curves of his weight and height:
Wednesday, July 4, 2012
Are we there yet... almost!
The last few months have been filled with contemplation, prayer, research, and many emotions. We didn't want to make the decision of surgery or Comfort Care quickly, but we also felt that we needed to decide what we wanted to do before the birth of our baby. Making this decision has been the most difficult choice we've ever made together, and we haven't taken it lightly. There were times during the past months that both options have felt good, but in the end the treatment that we felt most at peace with was comfort care.
We are currently at the hospital and Melissa is making good progress. We are hoping that this baby arrives today, July 4th. After the delivery we will spend some time in the hospital to make sure that mom is well enough to return home. Once we are discharged from the hospital the baby will be transferred to hospice care to keep it comfortable while at home. The life expectancy for this child is anywhere from 3 to 22 days, with the average being 12 days. We will cherish every moment of this baby's life. Jonathan has been able to take a month off of work, so we can all be together for this.
During these last few months we have felt an incredible amount of peace and comfort. We know that this is in part due to the many prayers offered in our behalf, Thank You! We feel so blessed to be surrounded by such wonderful people. We also gather much strength knowing that this child will be part of our family forever, even if only for a short time on earth.
p.s. Stay tuned for more info to come in the next few days.
We are currently at the hospital and Melissa is making good progress. We are hoping that this baby arrives today, July 4th. After the delivery we will spend some time in the hospital to make sure that mom is well enough to return home. Once we are discharged from the hospital the baby will be transferred to hospice care to keep it comfortable while at home. The life expectancy for this child is anywhere from 3 to 22 days, with the average being 12 days. We will cherish every moment of this baby's life. Jonathan has been able to take a month off of work, so we can all be together for this.
During these last few months we have felt an incredible amount of peace and comfort. We know that this is in part due to the many prayers offered in our behalf, Thank You! We feel so blessed to be surrounded by such wonderful people. We also gather much strength knowing that this child will be part of our family forever, even if only for a short time on earth.
p.s. Stay tuned for more info to come in the next few days.
Tuesday, June 26, 2012
Thursday, June 7, 2012
Gender Guessing Pool
As you know, we are expecting our second child in about 4 weeks. Since we didn't learn the baby's gender, we invite you all to join our fun guessing game...
To play, just answer the questions below
1. Gender
2. Birth Date
3. Birth Weight
To win, you MUST guess the correct gender, then be closest on the Birth Date. The Birth Weight will help determine any necessary tie breaker between possible winners.
Any guess will be considered valid as long as it is entered BEFORE the onset of labor. Yes, the onset of labor marks the END of the guessing opportunity, so don't delay--post your guess today!
To play, just answer the questions below
1. Gender
2. Birth Date
3. Birth Weight
To win, you MUST guess the correct gender, then be closest on the Birth Date. The Birth Weight will help determine any necessary tie breaker between possible winners.
Any guess will be considered valid as long as it is entered BEFORE the onset of labor. Yes, the onset of labor marks the END of the guessing opportunity, so don't delay--post your guess today!
Sunday, April 22, 2012
Getting Ready = New Car
In anticipation of our future with baby #2, we decided the time had come to purchase a second car. We've know we wouldn't remain a one-car family forever, and luckily were able to plan for this purchase and save money over the years. Neither of us really enjoy the car buying experience. We did research to try and narrow down the parameters that we "needed" and "wanted". Of course many of the needs turned into wants as we started looking at prices. Here is a short description of our experience.
When we began shopping for cars, we started at CarMax, where they told us we could walk around and look at any of the cars, but none of them would fit our price range. We looked inside a few of the small cars to make sure that I could actually fit into them (6'2" is a tight squeeze in some cars). We really liked some of the cars, just not the price range. Next we headed to a Chevrolet dealership to look at a used Chevy Aveo. We got the usual dealership treatment: the long and slow process to test drive the car while the entire time they are telling you about how great this car is, and how it will be perfect for you and you must obviously be ready to sign the papers, here's a pen! We knew we weren't going to buy that car, since we had only started looking. When we told this to the salesman he said "why not make this be the first and the last?" We replied "It might be our first and last, but not without several in the middle."
Next we jumped on KSL.com classifieds for used cars. We found several that looked pretty good, but it's funny how people "forget" to post pictures of the side of the car with the huge dent. We knew if we looked long enough we'd find a good used car, but we struggled to manage our time in the evenings to make appointments and drive around looking at private party cars. We were now super frustrated with the whole thing.
At this point Melissa asked her sister about her experience with an auto brokerage in Seattle, Duffy's. She had good things to say, and Melissa's parents had also purchased several cars from him as well. Duffy's is a small company and the owner Tim was amazing to work with. He really knew his stuff and was able to help us determine if we could get all of our needs within the budget we had. He emailed us some information about several of the cars coming up at the auction, and we told him which ones we would be willing to purchase. He would then go to auction and see if the car was within our budget. The first few cars we selected went over our budget, so we had to wait until the following week for the next auction. This time we had picked out 5-6 cars, all of which we would have been happy with. Tim threw out 3 of them after inspecting and test driving them, saying "You really don't want that car--I don't want to get you that car." It was nice having an advocate more interested in meeting our needs than selling us the most expensive car he could find us.
In the end Tim found us a 2006 Ford Focus ZX4 SES. We opted for the official third party post-auction frame inspection and mechanical inspection to ensure the car didn't have any subtle problems. Then Tim picked it up from auction, cleaned it, put 2 brand new tires on it, changed the oil, topped of the air conditioning system, and turned the front brake rotors. We initially contacted him on March 30th and by April 14th we took possession of the car. We were grateful to have Tim helping us--by far the best car buying experience we've ever had.
Shameless plug (that we're not being compensated for!): If you're in the market for a car purchase, Tim is licensed to buy/sell in all states. He can shop by price point or by specific make/model/feature list. If you are interested in hiring him, visit his website for more info and his phone number: http://duffysauto.com/
We've now put 175+ miles on the car. It drives well and gets pretty great gas mileage. All of the major "used-car" things got attention from Tim, and now we're fixing up all the little things like buying sun shades, looking into window tinting, upgrading the stereo, fixing the fan speed switch, new wiper blades, etc. We're happy with the purchase and definitely enjoying the two-car family world! Here's a picture of the "new" car:
When we began shopping for cars, we started at CarMax, where they told us we could walk around and look at any of the cars, but none of them would fit our price range. We looked inside a few of the small cars to make sure that I could actually fit into them (6'2" is a tight squeeze in some cars). We really liked some of the cars, just not the price range. Next we headed to a Chevrolet dealership to look at a used Chevy Aveo. We got the usual dealership treatment: the long and slow process to test drive the car while the entire time they are telling you about how great this car is, and how it will be perfect for you and you must obviously be ready to sign the papers, here's a pen! We knew we weren't going to buy that car, since we had only started looking. When we told this to the salesman he said "why not make this be the first and the last?" We replied "It might be our first and last, but not without several in the middle."
Next we jumped on KSL.com classifieds for used cars. We found several that looked pretty good, but it's funny how people "forget" to post pictures of the side of the car with the huge dent. We knew if we looked long enough we'd find a good used car, but we struggled to manage our time in the evenings to make appointments and drive around looking at private party cars. We were now super frustrated with the whole thing.
At this point Melissa asked her sister about her experience with an auto brokerage in Seattle, Duffy's. She had good things to say, and Melissa's parents had also purchased several cars from him as well. Duffy's is a small company and the owner Tim was amazing to work with. He really knew his stuff and was able to help us determine if we could get all of our needs within the budget we had. He emailed us some information about several of the cars coming up at the auction, and we told him which ones we would be willing to purchase. He would then go to auction and see if the car was within our budget. The first few cars we selected went over our budget, so we had to wait until the following week for the next auction. This time we had picked out 5-6 cars, all of which we would have been happy with. Tim threw out 3 of them after inspecting and test driving them, saying "You really don't want that car--I don't want to get you that car." It was nice having an advocate more interested in meeting our needs than selling us the most expensive car he could find us.
In the end Tim found us a 2006 Ford Focus ZX4 SES. We opted for the official third party post-auction frame inspection and mechanical inspection to ensure the car didn't have any subtle problems. Then Tim picked it up from auction, cleaned it, put 2 brand new tires on it, changed the oil, topped of the air conditioning system, and turned the front brake rotors. We initially contacted him on March 30th and by April 14th we took possession of the car. We were grateful to have Tim helping us--by far the best car buying experience we've ever had.
Shameless plug (that we're not being compensated for!): If you're in the market for a car purchase, Tim is licensed to buy/sell in all states. He can shop by price point or by specific make/model/feature list. If you are interested in hiring him, visit his website for more info and his phone number: http://duffysauto.com/
We've now put 175+ miles on the car. It drives well and gets pretty great gas mileage. All of the major "used-car" things got attention from Tim, and now we're fixing up all the little things like buying sun shades, looking into window tinting, upgrading the stereo, fixing the fan speed switch, new wiper blades, etc. We're happy with the purchase and definitely enjoying the two-car family world! Here's a picture of the "new" car:
Sunday, April 8, 2012
Happy Easter!
In and around the fun times this week, there were a bunch of rough patches. That's kinda how things are lately: Life with a fun-loving toddler sprinkled with occasional moments of "losing it." But there always seems to be someone there at just the right time to say just the right thing--nothing big or earth shattering...but just enough.
Things are serious enough around here so we planned an especially light-hearted Easter for our little family. Chelsea and I hid daddy's Easter basket, and while he was looking for it he said "I wonder where it is..." to which Chelsea immediate responded 6 or 7 times "It's in the dryer." All the while I'm covering her mouth saying "don't tell daddy, let him find it!" That was a little anti-climatic, but totally fun.
Then daddy hid Chelsea's basket and mommy's basket. She and I had fun hunting all over for them. She looked on her little art table and didn't see it, but thought it might be under all her papers, so in the middle of the search she decided she needed to clean up all her crayons and papers. "I clean my crayons, find my basket!" That kid cracks me up. She found the basket in her bedroom on the bookshelf. Mine was in the office garbage can, under the liner. Sneaky daddy!
We dumped out all the candy and Chelsea went to town--so content and so pleased that we were all sitting round the dinner table munching on candy together. Later we did an egg hunt out back. She did really well and found most of the eggs with little, if any, help. She would get so excited to find one she'd start jumping and all the eggs already in her basket would coming spilling out. "Oh no! It's otay, I pick up!" The other day she heard me say "oh my gosh" and she picked it up, sort of. Halfway through her hunt she got so excited she kept exclaiming "Holy Gosh! Holy Gosh!" Again, this kid cracks me up!
The weather was beautiful, so we went on a short walk and tricycle ride. She got to visit with her uncle Josh who lives upstairs from us. Then we ate a yummy dinner and afterward we watched the sugar-high whirlwind of a two-year old tear around the living room. And just to throw a whole new level of craziness in, I chopped Chelsea's hair tonight. I couldn't stand it after doing it for church and watching it wisp around all day. We used daddy's clippers, the biggest attachment, then trimmed it up with scissors. It's pixie short and she loves it! The whole time she kept saying "Bye-bye baby hair. I get hair-tut." After we were done she looked in the mirror and exclaimed "It's MY hair now! Not baby hair. And NOT in my eyes!" It already looks so much thicker to me and I'm hoping it grows in super full and healthy--no more of this wispy fine stuff of all different lengths!
All in all it's been a wonderful day. We're so blessed to be able to share so much fun and sweetness with our little girl. We love her to pieces!
Happy Easter, everyone. Hopefully your celebrations were just as glorious.
Things are serious enough around here so we planned an especially light-hearted Easter for our little family. Chelsea and I hid daddy's Easter basket, and while he was looking for it he said "I wonder where it is..." to which Chelsea immediate responded 6 or 7 times "It's in the dryer." All the while I'm covering her mouth saying "don't tell daddy, let him find it!" That was a little anti-climatic, but totally fun.
Then daddy hid Chelsea's basket and mommy's basket. She and I had fun hunting all over for them. She looked on her little art table and didn't see it, but thought it might be under all her papers, so in the middle of the search she decided she needed to clean up all her crayons and papers. "I clean my crayons, find my basket!" That kid cracks me up. She found the basket in her bedroom on the bookshelf. Mine was in the office garbage can, under the liner. Sneaky daddy!
We dumped out all the candy and Chelsea went to town--so content and so pleased that we were all sitting round the dinner table munching on candy together. Later we did an egg hunt out back. She did really well and found most of the eggs with little, if any, help. She would get so excited to find one she'd start jumping and all the eggs already in her basket would coming spilling out. "Oh no! It's otay, I pick up!" The other day she heard me say "oh my gosh" and she picked it up, sort of. Halfway through her hunt she got so excited she kept exclaiming "Holy Gosh! Holy Gosh!" Again, this kid cracks me up!
The weather was beautiful, so we went on a short walk and tricycle ride. She got to visit with her uncle Josh who lives upstairs from us. Then we ate a yummy dinner and afterward we watched the sugar-high whirlwind of a two-year old tear around the living room. And just to throw a whole new level of craziness in, I chopped Chelsea's hair tonight. I couldn't stand it after doing it for church and watching it wisp around all day. We used daddy's clippers, the biggest attachment, then trimmed it up with scissors. It's pixie short and she loves it! The whole time she kept saying "Bye-bye baby hair. I get hair-tut." After we were done she looked in the mirror and exclaimed "It's MY hair now! Not baby hair. And NOT in my eyes!" It already looks so much thicker to me and I'm hoping it grows in super full and healthy--no more of this wispy fine stuff of all different lengths!
All in all it's been a wonderful day. We're so blessed to be able to share so much fun and sweetness with our little girl. We love her to pieces!
Happy Easter, everyone. Hopefully your celebrations were just as glorious.
Friday, March 30, 2012
Meeting our new Doctor
We had our first appointment with our OB today. Because of the high-risk nature of the delivery we are now working the hospitals's maternal fetal medicine team. After doing some research and asking around we picked Dr. Esplin. He was wonderful, and met our expectations perfectly. Of course it is always going to be a subject that is difficult to confront, but we feel we have a great ally.
The appointment started out with an ultra-sound, so they could monitor the baby's growth and development. The measurements show that the baby is a bit underdeveloped, but everything is still within range so this isn't alarming... phew!
After the ultra-sound tech did her magic Dr. Esplin joined us and consulted with us on our baby's future and the decisions that needed to be made. He didn't seem rushed, he let us ask all the questions we had, and was even happy when we pulled our our bulleted list of questions.
During our consultation with Dr. Esplin it became clear that although there are other babies with HLHS, every situation is different and unique. We know we have a big decision to make, and it won't be easy! Near the end of the appointment Dr. Esplin pulled the ultrasound wand from the machine and shared this precious picture with us:
This was the first 3-D ultrasound I'd ever seen. And what a wonderful sight it was... Looks so peaceful and relaxed.
As this pregnancy progresses we feel this little angel becoming more and more a part of our family. Although it may not be under the most favorable circumstances, we are truly blessed to have this sweet child be part of our family.
The appointment started out with an ultra-sound, so they could monitor the baby's growth and development. The measurements show that the baby is a bit underdeveloped, but everything is still within range so this isn't alarming... phew!
After the ultra-sound tech did her magic Dr. Esplin joined us and consulted with us on our baby's future and the decisions that needed to be made. He didn't seem rushed, he let us ask all the questions we had, and was even happy when we pulled our our bulleted list of questions.
During our consultation with Dr. Esplin it became clear that although there are other babies with HLHS, every situation is different and unique. We know we have a big decision to make, and it won't be easy! Near the end of the appointment Dr. Esplin pulled the ultrasound wand from the machine and shared this precious picture with us:
This was the first 3-D ultrasound I'd ever seen. And what a wonderful sight it was... Looks so peaceful and relaxed.
As this pregnancy progresses we feel this little angel becoming more and more a part of our family. Although it may not be under the most favorable circumstances, we are truly blessed to have this sweet child be part of our family.
Monday, March 26, 2012
Are You an Organ Donor?
People have been so kind this last week. Overwhelmingly compassionate. Thank you.
Right now we are coping pretty well, trying to keep life normal. We've been busy with a sick toddler (just a cold), insurance pre-authorizations, medical provider switches, buying a 2nd car (hate car shopping), filing taxes (we owe, bummer), and other such normal tasks...
Many of you have asked if there was anything you could do. Honestly, there isn't much for anyone to do besides wait and pray. Although, if you're game for something a bit out of the box, there is a small thing you could try...
I have thought a lot about how this baby will always need a heart transplant. Kind of ironic, considering my own path to becoming an organ donor: I used to be completely against it. Not that the arguments for or against it mattered much to me, really the whole thing just creeped me out. And now I am having a baby that may someday depend on an organ transplant.
Heart donors are rare. Child heart donors are even more rare, simply because, thankfully and wonderfully, most healthy children don't die.
But I think the questions are still important to ponder: Have you considered becoming an organ donor yourself? Have you considered organ donation for your children?
I hadn't thought of it at all for my own toddler, but I have this last week. I can't fathom how I'd live without her should anything that tragic happen. And yet, I have another child who may one day depend on another parent's consent in an awful situation.
There's no right or wrong answers to these extremely personal questions, but perhaps it's something you can think on and discuss with your spouse in the next few weeks. While your decisions probably won't have any effect on our situation, it's at least something you could do for us while we all wait.
Right now we are coping pretty well, trying to keep life normal. We've been busy with a sick toddler (just a cold), insurance pre-authorizations, medical provider switches, buying a 2nd car (hate car shopping), filing taxes (we owe, bummer), and other such normal tasks...
Many of you have asked if there was anything you could do. Honestly, there isn't much for anyone to do besides wait and pray. Although, if you're game for something a bit out of the box, there is a small thing you could try...
I have thought a lot about how this baby will always need a heart transplant. Kind of ironic, considering my own path to becoming an organ donor: I used to be completely against it. Not that the arguments for or against it mattered much to me, really the whole thing just creeped me out. And now I am having a baby that may someday depend on an organ transplant.
Heart donors are rare. Child heart donors are even more rare, simply because, thankfully and wonderfully, most healthy children don't die.
But I think the questions are still important to ponder: Have you considered becoming an organ donor yourself? Have you considered organ donation for your children?
I hadn't thought of it at all for my own toddler, but I have this last week. I can't fathom how I'd live without her should anything that tragic happen. And yet, I have another child who may one day depend on another parent's consent in an awful situation.
There's no right or wrong answers to these extremely personal questions, but perhaps it's something you can think on and discuss with your spouse in the next few weeks. While your decisions probably won't have any effect on our situation, it's at least something you could do for us while we all wait.
Saturday, March 17, 2012
Fetal Echocardiogram
Friday, March 16, we drove to Primary Children's hospital for the Fetal Echocardiogram. I was way paranoid about getting there on time, so we arrived unexpectedly super early and had to wait an hour.
A Fetal Echocardiogram is an intense ultrasound--about 50 minutes long focused only on the baby's heart. The tech took still shots, videos, thermal blood flow maps, heart rates, measurements, etc. It was all very scientific and still just as blurry as any other ultrasound we've been too.
After the tech got all the shots, we moved to a consult room where the cardiologist met us to review the results. It was a really nice room--comfy couch, fluffy cushions, nice furniture--like a living room. It made me way too nervous and I was sure that nothing good could come of a conversation with a cardiologist in a room this "comforting". I was right.
Our baby has a very rare and life-threatening heart defect called Hypoplastic Left Heart Syndrome (HLHS). Without surgery it is fatal. Even with ideal treatment conditions, it is not a long life.
This does not appear to be a genetic defect. Something just went wrong in the early stages of pregnancy and would, in most cases, have ended in early miscarriage. There is no way we could have caused or prevented it. Since blood flow in a fetus is different than blood flow in a newborn, this baby will live easily to full-term. We will experience a "normal" pregnancy, labor, and delivery. At this point there is little anyone can do. Life for us will be pretty normal for the next 3 months, except for a few more doctor's appointments, a few more tests, and a lot of soul searching.
We have detailed some answers to more common questions in the side bar at the right. Please direct any of your questions there and we will post answers as we learn them. There are also some video explanations of the surgeries. We will continue to post more details and different aspects of this journey as we experience them.
Obviously this has been, and still is, a very raw and emotional time for us. We appreciate the struggle it is going to be for our families and friends as well. We have found great comfort in our faith. No matter what happens, it will be okay. Families are forever. We truly believe that. We pray for guidance, for strength and for comfort. Thank you for your prayers, love and understanding.
A Fetal Echocardiogram is an intense ultrasound--about 50 minutes long focused only on the baby's heart. The tech took still shots, videos, thermal blood flow maps, heart rates, measurements, etc. It was all very scientific and still just as blurry as any other ultrasound we've been too.
After the tech got all the shots, we moved to a consult room where the cardiologist met us to review the results. It was a really nice room--comfy couch, fluffy cushions, nice furniture--like a living room. It made me way too nervous and I was sure that nothing good could come of a conversation with a cardiologist in a room this "comforting". I was right.
Our baby has a very rare and life-threatening heart defect called Hypoplastic Left Heart Syndrome (HLHS). Without surgery it is fatal. Even with ideal treatment conditions, it is not a long life.
This does not appear to be a genetic defect. Something just went wrong in the early stages of pregnancy and would, in most cases, have ended in early miscarriage. There is no way we could have caused or prevented it. Since blood flow in a fetus is different than blood flow in a newborn, this baby will live easily to full-term. We will experience a "normal" pregnancy, labor, and delivery. At this point there is little anyone can do. Life for us will be pretty normal for the next 3 months, except for a few more doctor's appointments, a few more tests, and a lot of soul searching.
We have detailed some answers to more common questions in the side bar at the right. Please direct any of your questions there and we will post answers as we learn them. There are also some video explanations of the surgeries. We will continue to post more details and different aspects of this journey as we experience them.
Obviously this has been, and still is, a very raw and emotional time for us. We appreciate the struggle it is going to be for our families and friends as well. We have found great comfort in our faith. No matter what happens, it will be okay. Families are forever. We truly believe that. We pray for guidance, for strength and for comfort. Thank you for your prayers, love and understanding.
The Beginning
February 10th was our regularly scheduled fetal well-being ultrasound--the one where most people learn if they're having a boy or a girl. I was 19 weeks at the time, and since we didn't plan on finding out the gender, we down-played the whole thing. I'm not sure many of our friends or family members knew we were even having an ultrasound. That turned out to be an unexpected blessing.
It was a long appointment. The tech took a long time. The wait for the doctor took a long time. The doctor's scanning took a long time. And then Time did some funky shifting when she gently said, "I'm really sorry, but your baby has a heart defect."
It was hard to hear anything after that.
The doctor traded places with the genetic counselor and the intern. They did a full family medical history, gave us a basic description of the preliminary diagnosis, discussed the possible causes of the defect, and gave us a choice to terminate the pregnancy. After we declined that choice, they explained what needed to happen next: lots of patience.
No firm diagnosis could be given except by a pediatric cardiologist after a fetal echocardiogram test at Primary Children's hospital. None of this could happen until the baby and its heart grew bigger. We had 5 weeks to wait.
With no answers ourselves, we decided to put off telling family and friends until we knew more. I guess that's what brings us to today and the creation of this blog. It's time to fill everyone in on the details:
Our baby has a heart defect.
It was a long appointment. The tech took a long time. The wait for the doctor took a long time. The doctor's scanning took a long time. And then Time did some funky shifting when she gently said, "I'm really sorry, but your baby has a heart defect."
It was hard to hear anything after that.
The doctor traded places with the genetic counselor and the intern. They did a full family medical history, gave us a basic description of the preliminary diagnosis, discussed the possible causes of the defect, and gave us a choice to terminate the pregnancy. After we declined that choice, they explained what needed to happen next: lots of patience.
No firm diagnosis could be given except by a pediatric cardiologist after a fetal echocardiogram test at Primary Children's hospital. None of this could happen until the baby and its heart grew bigger. We had 5 weeks to wait.
With no answers ourselves, we decided to put off telling family and friends until we knew more. I guess that's what brings us to today and the creation of this blog. It's time to fill everyone in on the details:
Our baby has a heart defect.
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