Merry Christmas everyone! This year was the best Christmas in years for Brian and I and no doubt some of the excitement has to do with the fact that we look forward to Olivia's first Christmas next year. Even though she's still cooking along, she still managed to squeak out a few gifts from her uncles. She now has some Georgia Tech gear and a onesie properly mocking the Packers. :)
Most importantly our greatest present this Christmas has been the love and support of our families. Our parents have been phenomenal as have our siblings as we continue down the path towards Olivia's delivery. We realize that not every set of parents with situations like ours (or sadly worse) has such a loving group around them and are most appreciative even if we don't always voice our thanks.
As I watched the lights twinkle on the Christmas tree, I smile as I look over the little Guardian Angel ornament that a woman from work gave me for Olivia. How kind and thoughtful she was to take a moment and make a beautiful Angel specifically for our baby girl. I plan on putting it in Olivia's room as soon as the Christmas trees come down for the season. Then again...currently, we don't even have floors in Olivia's room. Her Christmas wish should probably be that Mommy and Daddy get going on giving her a proper place to sleep when she comes home!
Cinder-Livvy
Sunday, December 27, 2009
Wednesday, December 23, 2009
The Fabulous Dr. Cuneo
So today was my follow-up appointment with Dr. Cuneo, a very well known Pediatric Cardiologist that specializes on fetal cases of CHD's. In addition to seeing and working with patients; she is also on the board of directors of the Hope Children's Heart Institute. Like Dr. Ilbawi, I can't say enough nice things about her.
Again, the appointment started out late, emergency cases had to be squeezed in ahead of myself and other patients; but I'm starting to get immune to this - after all, I like the fact that I don't find myself being the emergency that is being rushed ahead of others. Either way, once it was our turn, my mother and I went back with the Tech who actually worked with me on the day that we got the HLHS diagnosis and she started the echo. It is quite clear that Olivia is growing nicely, everything about her is bigger and easier to make out during the ultrasounds. She was also in the perfect position for them to view her heart from all angles without any additional proding.
That's not to say that Olivia didn't put up a fight, we watched as she jabbed and kicked at the pressure of the probe being applied to my stomach. Shortly after we were underway, Dr. Cuneo came in to review the scan and made a point of introducing herself to my Mom and pointing out all the anatomy of Olivia's heart for my mom to visualize as they continued. Dr. Cuneo gave us the thumbs up, blood flow looks good throughout and the heart is pumping along quite nicely.
After the scan, my parents (Brian couldn't make the appointment because of work constraints) and I were able to sit and discuss all my questions and concerns that I still had with Dr. Cuneo and her nurse Janette. Really I did all the questions and Dr. Cuneo answered - my parents sat back and just soaked in the info as it came. The point was - after the appointment which was filled with nothing but good news about Olivia's continued development; Dr. Cuneo still sat there with us for a few minutes to talk about holiday traditions and family plans for Christmas.
Her sweet warm approach just makes everyone feel so at ease, you almost forget that you're at the doctor's and think it's more like catching up with a friend over coffee. No doubt, there is still serious information being discussed, but she has ended each visit with an expectation of Brian and I to make sure we call her personal cell if and when we ever have questions or concerns. We couldn't be happier to have a doctor like her looking over our daughter's best interests in the coming months.
Again, the appointment started out late, emergency cases had to be squeezed in ahead of myself and other patients; but I'm starting to get immune to this - after all, I like the fact that I don't find myself being the emergency that is being rushed ahead of others. Either way, once it was our turn, my mother and I went back with the Tech who actually worked with me on the day that we got the HLHS diagnosis and she started the echo. It is quite clear that Olivia is growing nicely, everything about her is bigger and easier to make out during the ultrasounds. She was also in the perfect position for them to view her heart from all angles without any additional proding.
That's not to say that Olivia didn't put up a fight, we watched as she jabbed and kicked at the pressure of the probe being applied to my stomach. Shortly after we were underway, Dr. Cuneo came in to review the scan and made a point of introducing herself to my Mom and pointing out all the anatomy of Olivia's heart for my mom to visualize as they continued. Dr. Cuneo gave us the thumbs up, blood flow looks good throughout and the heart is pumping along quite nicely.
After the scan, my parents (Brian couldn't make the appointment because of work constraints) and I were able to sit and discuss all my questions and concerns that I still had with Dr. Cuneo and her nurse Janette. Really I did all the questions and Dr. Cuneo answered - my parents sat back and just soaked in the info as it came. The point was - after the appointment which was filled with nothing but good news about Olivia's continued development; Dr. Cuneo still sat there with us for a few minutes to talk about holiday traditions and family plans for Christmas.
Her sweet warm approach just makes everyone feel so at ease, you almost forget that you're at the doctor's and think it's more like catching up with a friend over coffee. No doubt, there is still serious information being discussed, but she has ended each visit with an expectation of Brian and I to make sure we call her personal cell if and when we ever have questions or concerns. We couldn't be happier to have a doctor like her looking over our daughter's best interests in the coming months.
Tuesday, December 15, 2009
Another A+ for Livvy
Just a quick update, the last genetic test from the Amnio came in today. She does not have Di George's Syndrome! They screened her for this last abnormality because about 40% of babies with CHDs do test positive for Di George's which can show in any mild through moderate cognitive disabilities.
This is just another indicator that Olivia is a normal healthy happy baby while she's in utero. Please keep your fingers crossed that the news in coming weeks continues to be as positive.
This is just another indicator that Olivia is a normal healthy happy baby while she's in utero. Please keep your fingers crossed that the news in coming weeks continues to be as positive.
Saturday, December 12, 2009
Dr. Ilbawi 12/11
So yesterday was our big appointment with the Pediatric Cardio-Thoracic surgeon. We had been looking forward to meeting with him for the last couple of weeks to get a feel for his personality, discuss the surgical options and most of all to see where he felt Olivia's case was on the spectrum of difficulty for HLHS patients.
It started like all our other appointments of late...which is LATE. It has been par for the course that the more specialized the doctors, the longer the average wait time. This time though, it was because he was finishing up a surgery on a pediatric patient at another hospital. Enough said right there, we weren't about to sqawk about anything as serious as that.
Finally he came back to Hope and started seeing all these parents waiting to discuss their sick kids or babies (many women were pregnant) - by 3:30PM on a Friday afternoon his staff was looking for additional chairs to put out in the waiting room. Eventually it was our turn to be seen and I couldn't be more thrilled with the results. He's a wonderfully warm man, that I can't say enough about. He drew us diagrams of the normal heart and then an overview of Olivia's to show how the two differ.
We went in depth into the first procedure traditionally known as the Norwood, step by step and he was happy to answer our questions the entire way.
Here's how it will play out:
It started like all our other appointments of late...which is LATE. It has been par for the course that the more specialized the doctors, the longer the average wait time. This time though, it was because he was finishing up a surgery on a pediatric patient at another hospital. Enough said right there, we weren't about to sqawk about anything as serious as that.
Finally he came back to Hope and started seeing all these parents waiting to discuss their sick kids or babies (many women were pregnant) - by 3:30PM on a Friday afternoon his staff was looking for additional chairs to put out in the waiting room. Eventually it was our turn to be seen and I couldn't be more thrilled with the results. He's a wonderfully warm man, that I can't say enough about. He drew us diagrams of the normal heart and then an overview of Olivia's to show how the two differ.
We went in depth into the first procedure traditionally known as the Norwood, step by step and he was happy to answer our questions the entire way.
Here's how it will play out:
- I will go into labor naturally and deliver Olivia at Advocate Christ Hospital
- Shortly thereafter the Peds staff will take Olivia to the NICU for evaluation and to put her on an IV of Prostaglandin (synthetic hormone meant to mimic in utero and keep her ductus open) until she's ready for surgery
- Olivia will undergo a chest ultrasound and MRI to review precise measurements of vessels and heart structure to determine surgical plan
- Brian and I, as well as family over the age of 18 will be allowed to visit her as much as we want in these days leading up to surgery
- Day of surgery, she will be intubated and taken down to the OR - prep for the surgery will take about an hour
- Surgery itself will be approximately 2 - 2 1/2 hours
- Dr. Ilbawi and his staff will stay in the OR for at least an hour after the surgery to review her vitals and make sure that she is stable before they bring her back up to NICU or PICU
Since most of these babies swell a fair amount during the surgical procedure, they feel it best to leave their chest cavities open for the next 72 hours to allow for the swelling to go down. In my opinion this is best anyway because it also gives them a little time to make sure that her O2 stats are where they want them to be. Sometimes the size of the shunt used during the procedure can be too big or too small and they have to go back in and change the size. Since they haven't officially closed the babies chest, it makes it less invasive.
Our fears of complications regarding her being placed on bypass seem to be unfounded. Dr. Ilbawi said that his patients have not had neurological issues following the use of bypass, in fact thus far the only real complication that they have seen is when the surgery itself is just too great of a stress on the heart and the babies have a hard time being weaned off the bypass at all. In that case they will put the babies on ECMO (which is a machine that they are hooked up to that will help oxygenate their blood while it gives the heart a chance to recover from the surgery).
While the national average survival rates for this first round of surgery are between 70's-85%, Hope Hospital has a rate as high as 92%. This accounts for all cases - even the worst ones where the parents didn't know the diagnosis until they were home and brought their babies back in cardiac arrest. We are very comforted by these numbers and more importantly by the man himself. He reviewed all the information on Olivia's case and feels that she will do really well because this is her only complication/defect and she has a reasonably sized aorta compared to many of these other HLHS babies. The best news of all is nothing can get worse with this condition for the rest of my pregnancy, in fact things can only improve. I am grinning as I type this because it still makes me so happy to think of things getting better as we continue on.
I don't mean to belittle the extent of the HLHS, it is by far the rarest and most complicated heart defect with survivable options; but it is clear, Dr. Ilbawi with his over 30 years experience has seen and done a lot in the world of these tiny heart patients and that is a wonderful comfort. His optimism for Olivia and her future was just awesome.
Thursday, December 10, 2009
Why a blog?
Some may ask why a blog? Well there's a few reasons behind it. For one, I think it's cathartic for me to put my thoughts down on paper, but as I do so, I'm also making a memory book of sorts for Livvy. Someday she'll be able to sit down and read how we felt, what we experienced and most importantly how much she was loved and believed in from the get go. Lastly, we have out of town friends and family that can at least stay as up to date as they would like without having to call and get caught up on weeks of information at a time.
I plan on keeping everything current from our meeting with the Pediatric Cardio Thoracic surgeon tomorrow to keeping updates while we're in and out of the hospital and most happily once we're back at home!
Between now and at least week 30 of my pregnancy I wouldn't expect too much new information because I'm not high risk and require no extra medical attention. Olivia on the other hand will need to be seen and scanned each week after week 30 to make sure that her growth is still progressing on the right track and she's not showing any signs of fetal distress.
At this point in my life I can say boring is good. I want to be able to say that I have no new news when people ask what's new or what's going on. The more boring the better. Well I guess with the exception that we're on for shopping for baby stuff this weekend. I chucked the idea of doing the neutral baby stuff for the nursery. Brian may have to face walking into a world that resembles Candyland at the rate that I'm going!
I plan on keeping everything current from our meeting with the Pediatric Cardio Thoracic surgeon tomorrow to keeping updates while we're in and out of the hospital and most happily once we're back at home!
Between now and at least week 30 of my pregnancy I wouldn't expect too much new information because I'm not high risk and require no extra medical attention. Olivia on the other hand will need to be seen and scanned each week after week 30 to make sure that her growth is still progressing on the right track and she's not showing any signs of fetal distress.
At this point in my life I can say boring is good. I want to be able to say that I have no new news when people ask what's new or what's going on. The more boring the better. Well I guess with the exception that we're on for shopping for baby stuff this weekend. I chucked the idea of doing the neutral baby stuff for the nursery. Brian may have to face walking into a world that resembles Candyland at the rate that I'm going!
And we wait on results
The first results from the amnio known as FISH results would be available within the first 48-72 hours. They would tell us if she had any of 6 genetic abnormalities like Down's Syndrome and any other condition that could be the underlying cause for a heart defect.
I came home day 1 like usual and tried not to give it much thought because I had already been warned that these FISH results could give us false negatives. Meaning it could say she was fine and didn't have Down's when really the final results would indicate that she actually did.
Day 2 was a little more tense, I came in and saw the message light on the phone. Did I want to check it or not? Brian didn't have school that night so I could wait for him, but temptation got the best of me. I checked it and heard that all was clear on the FISH results. Now we really wait. Our baby's life was already different, how much were these results going to change things? Well the answer could be substantially if she had an abnormality that involved multiple systems or underdevelopment of her brain and so on and on. Anything that would take her out of the running as a heart surgery candidate would be deterimental to our entire outlook.
The weekend passed and people that knew of the test were starting to ask if I had heard anything. Of course not people! If we knew something you would hear it from us, it was a big enough deal that we would be forthcoming with results no matter how sad they may be.
Now a week has gone by and we're starting to talk about the following weekend's plans. It's time to start registering for our shower, but I'm thinking "Oh we are going to go register for this baby that might not ever come home with us depending on these results". Please let us get the results before the weekend because I can't think of how she'll look in this or that outfit and then never have her wear it.
Tuesday goes by, and nothing. Wednesday goes by and nothing, but then I look at the phone when I get home and there's the message light again. Oooh do I want to do this? Again I could wait for Brian but I think no, if the news is bad I want to tell him myself instead of letting him listen to the message. So I nervously pick up the phone and retrieve messages only to hear some charity message...ugh...message #2 Amnio results are in and baby is 100% genetically NORMAL! Thank God, this was a terrible fluke, but Olivia is all right otherwise and she is still a go for surgeries.
I can't even wait for Brian to come home, I call him at the office to tell him that she's fine and we are in the clear from the genetic perspective. He is proud and wants paper results so we can put an A+ on them and stick them on the fridge for her first test scores to be displayed for all to see. This cracks me up because I know that it was big deal for my sister and I to post our tests up on the fridge for all to see when we were little. Olivia will be a normal munchkin despite her rocky beginning and for now that's enough to sleep well at night.
I came home day 1 like usual and tried not to give it much thought because I had already been warned that these FISH results could give us false negatives. Meaning it could say she was fine and didn't have Down's when really the final results would indicate that she actually did.
Day 2 was a little more tense, I came in and saw the message light on the phone. Did I want to check it or not? Brian didn't have school that night so I could wait for him, but temptation got the best of me. I checked it and heard that all was clear on the FISH results. Now we really wait. Our baby's life was already different, how much were these results going to change things? Well the answer could be substantially if she had an abnormality that involved multiple systems or underdevelopment of her brain and so on and on. Anything that would take her out of the running as a heart surgery candidate would be deterimental to our entire outlook.
The weekend passed and people that knew of the test were starting to ask if I had heard anything. Of course not people! If we knew something you would hear it from us, it was a big enough deal that we would be forthcoming with results no matter how sad they may be.
Now a week has gone by and we're starting to talk about the following weekend's plans. It's time to start registering for our shower, but I'm thinking "Oh we are going to go register for this baby that might not ever come home with us depending on these results". Please let us get the results before the weekend because I can't think of how she'll look in this or that outfit and then never have her wear it.
Tuesday goes by, and nothing. Wednesday goes by and nothing, but then I look at the phone when I get home and there's the message light again. Oooh do I want to do this? Again I could wait for Brian but I think no, if the news is bad I want to tell him myself instead of letting him listen to the message. So I nervously pick up the phone and retrieve messages only to hear some charity message...ugh...message #2 Amnio results are in and baby is 100% genetically NORMAL! Thank God, this was a terrible fluke, but Olivia is all right otherwise and she is still a go for surgeries.
I can't even wait for Brian to come home, I call him at the office to tell him that she's fine and we are in the clear from the genetic perspective. He is proud and wants paper results so we can put an A+ on them and stick them on the fridge for her first test scores to be displayed for all to see. This cracks me up because I know that it was big deal for my sister and I to post our tests up on the fridge for all to see when we were little. Olivia will be a normal munchkin despite her rocky beginning and for now that's enough to sleep well at night.
Amniocentesis 11/30
The game plan was that I was going to get up and go to work like normal, work for a few hours, meet up with my mom at our house and then head off to the amnio because you're not supposed to drive after the procedure. Brian had already missed an extra day of work that we hadn't planned on and I figured it was a routine enough test that Mom and I would be fine going together. She wanted to do something to help me and I really needed the help so off we went.
They saw me a lot quicker this time and announced that they were going to do another Level 2 scan of Olivia to make sure that they reviewed all of her this time since Dr. Taylor had previously just focused on her heart. The butterflies the size of 747's returned. First of all, I already knew what they were looking for, many babies diagnosed with HLHS have other organ or system deformities and they wanted to make sure Olivia wasn't one of those. Secondly, I was really worried that I may have chosen the wrong person to come with me to the doctor. My mom already had a really hard time accepting the news that even if all the surgeries were successful that Olivia would most likely be on medication for the rest of her life. Any more bad news may just put her over the edge and then both she and I would be stuck at the doctor's office waiting for my dad to come get us.
Either way, the radiologist technician started working away, scanning all up and down every square inch of Olivia for us to view in HD which was pretty cool. She talked about how she once worked with Dr. Cuneo (Peds Cardiologist) and how great of a doctor she is - all good news. Then she went on to talk about how fantastic Dr. Ilbawi is and his success with pediatric cardio cases - again more good news. From the little I knew at this point the Pediatric Cardiology world is a pretty small place, everyone knows everyone else. The rad tech finished up and went to get the doctor...while she was gone I was preparing my mom for somewhat of a drip of a personality. Dr. Taylor had not seemed to make much of an impression on my last visit and so didn't he start off this visit with a handshake, exchange of pleasantries and overall social outlook. I can only put it down to him knowing he was giving us bad news last time and this time he had nothing but good to report.
He reviewed the scans, did some scanning of his own and then announced that everything else looked really good. In fact, Livvy was measuring in around 1.2 lbs which caught me off guard. I had been reading baby books and all baby info which indicated that a baby in 22.5 weeks gestation was supposed to weigh around 13 oz. Ooops! He sort of chuckled and said that she was a little chunky but I was encouraged at least she is getting enough nutrients and in light of the upcoming surgeries that she will face - bigger really is better.
Then it was needle time or as Brian crudely calls it, time for me to get stabbed. For the first time in all the ultrasounds we have had, Olivia actually cooperated. She gave them a big spot to draw fluid from and stayed nicely out of the way until they were done. I was very pleased with her and proud of my mom for hanging out so calmly (she can be squeamish) with me through the whole test. We left the office with Dr. Taylors encouraging words that he felt her scan was so good he really expected a clear amnio result and headed home to meet my dad who would be spending the rest of his day babysitting me while I was on bedrest as a precaution.
As good as Olivia was throughout the test, that's how bad she was the next two hours. I think she was fed up from being poked and prodded with numerous ultrasounds in the past couple of weeks and she let me know it. As I sat on the couch checking emails, she gave me the first visible kick I have ever seen her give. She continued to have a fit for the next couple of hours until I dozed off and she must have too. Overall though, I was pleased to see that she had enough of her own little personality to summon up the energy for a hissy fit while in utero. That's my girl!
They saw me a lot quicker this time and announced that they were going to do another Level 2 scan of Olivia to make sure that they reviewed all of her this time since Dr. Taylor had previously just focused on her heart. The butterflies the size of 747's returned. First of all, I already knew what they were looking for, many babies diagnosed with HLHS have other organ or system deformities and they wanted to make sure Olivia wasn't one of those. Secondly, I was really worried that I may have chosen the wrong person to come with me to the doctor. My mom already had a really hard time accepting the news that even if all the surgeries were successful that Olivia would most likely be on medication for the rest of her life. Any more bad news may just put her over the edge and then both she and I would be stuck at the doctor's office waiting for my dad to come get us.
Either way, the radiologist technician started working away, scanning all up and down every square inch of Olivia for us to view in HD which was pretty cool. She talked about how she once worked with Dr. Cuneo (Peds Cardiologist) and how great of a doctor she is - all good news. Then she went on to talk about how fantastic Dr. Ilbawi is and his success with pediatric cardio cases - again more good news. From the little I knew at this point the Pediatric Cardiology world is a pretty small place, everyone knows everyone else. The rad tech finished up and went to get the doctor...while she was gone I was preparing my mom for somewhat of a drip of a personality. Dr. Taylor had not seemed to make much of an impression on my last visit and so didn't he start off this visit with a handshake, exchange of pleasantries and overall social outlook. I can only put it down to him knowing he was giving us bad news last time and this time he had nothing but good to report.
He reviewed the scans, did some scanning of his own and then announced that everything else looked really good. In fact, Livvy was measuring in around 1.2 lbs which caught me off guard. I had been reading baby books and all baby info which indicated that a baby in 22.5 weeks gestation was supposed to weigh around 13 oz. Ooops! He sort of chuckled and said that she was a little chunky but I was encouraged at least she is getting enough nutrients and in light of the upcoming surgeries that she will face - bigger really is better.
Then it was needle time or as Brian crudely calls it, time for me to get stabbed. For the first time in all the ultrasounds we have had, Olivia actually cooperated. She gave them a big spot to draw fluid from and stayed nicely out of the way until they were done. I was very pleased with her and proud of my mom for hanging out so calmly (she can be squeamish) with me through the whole test. We left the office with Dr. Taylors encouraging words that he felt her scan was so good he really expected a clear amnio result and headed home to meet my dad who would be spending the rest of his day babysitting me while I was on bedrest as a precaution.
As good as Olivia was throughout the test, that's how bad she was the next two hours. I think she was fed up from being poked and prodded with numerous ultrasounds in the past couple of weeks and she let me know it. As I sat on the couch checking emails, she gave me the first visible kick I have ever seen her give. She continued to have a fit for the next couple of hours until I dozed off and she must have too. Overall though, I was pleased to see that she had enough of her own little personality to summon up the energy for a hissy fit while in utero. That's my girl!
Statistics & Reactions
As I mentioned previously, statistics have become a big part of what we're wading through amongst all the information we can get our hands on. Here are some of the biggies...approximately 85% of all babies that have HLHS surive the first surgical procedure, by surgery 2 that creeps up in the low 90's and by round 3 we're talking around 98% survival rate. That is all well and good and believe me, of course I get that medical technology is ever evolving and 20 years ago all but a few of these babies died within their first week of life.
Our odds are probably a little better than 85% survival on the first surgery for the simple fact that we are aware of Olivia's condition before she's born. See the thing about HLHS is that it can be easy to miss and there can be absolutely nothing wrong with these babies in their first few days of lives. Some of these poor parents happily took their babies home only to find that a couple of days later they were either having a cardiac episode or even worse had passed away in their sleep as their ductus (fetal heart valves that close within the first 10 days of life) closed as they are supposed to do.
In utero, Olivia is like any normal healthy baby, she's getting all her food and oxygen from me and growing as she should be. It's only after delivery when those ductus start to close that she will or would have issues. The idea is that shortly after delivery she will be given an IV of prostaglandin (medicine to keep her heart ductus open) to prolong her fetal circulatory state until surgery and then surgery will stabilize her blood flow until she's a little bigger to take on some more serious re-plumbing.
I understand, we are blessed. Blessed to know what we are up against, and blessed to have the time, opportunity and resources to put together a game plan before she ever makes her debut. Perhaps even more blessed to have all of our immediate family intact, ready and willing to help and most importantly LOCAL. Maybe it was fortuitous that we got all this news in the week of Thanksgiving.
Aside from all of those blessings and thanks I did have quite the interesting week observing our families reactions. Some thought we would call off Thanksgiving because of all the news, some assumed that it was a hush hush topic and others didn't talk about it at all even if I broached the subject. I felt like a jerk with the super optimistic people who felt like it could be just all a misunderstanding, a mistake perhaps that would clearly sort itself out once she was born. I would smile and nod but cautiously explain that I had seen the ultrasounds for myself, seen her little heart pump all over except in that lower left corner that just sat still. But still they hold out hope that maybe a miracle will happen. I am certainly not saying that we are too good for a miracle, by all means I hold out the slightest hope that this is somehow wrong and this happened because it was to serve as a lesson to us as parents of how precious Olivia would be to us, regardless of her still inside me or not. I just cannot 100% put all my faith and trust in that miracle because it would be a crushing blow to think that for the next few months and then still have to say "see you later" if and when the first surgery rolls around.
Friends were next, once the holiday weekend was over we started telling our closest friends. If I thought family was interesting, friends were moreso. You had the few that openly admitted they had absolutely nothing to say (props to them), some that looked like they may throw up at the thought of what I was saying, others offered to fly out at a moment's notice if we needed them and lastly the group that tried to buoy our spirits by focusing on the odd's. "85% is really good, I'm sure she'll be fine". I know 85% is good, there were many a test that I was stoked with an 85%; but I couldn't help thinking and even pointing out what their reactions would have been if that 85% was their child's life in the balance. Would that be enough? What is enough when you're talking about the odds and the life of a loved one?
Our odds are probably a little better than 85% survival on the first surgery for the simple fact that we are aware of Olivia's condition before she's born. See the thing about HLHS is that it can be easy to miss and there can be absolutely nothing wrong with these babies in their first few days of lives. Some of these poor parents happily took their babies home only to find that a couple of days later they were either having a cardiac episode or even worse had passed away in their sleep as their ductus (fetal heart valves that close within the first 10 days of life) closed as they are supposed to do.
In utero, Olivia is like any normal healthy baby, she's getting all her food and oxygen from me and growing as she should be. It's only after delivery when those ductus start to close that she will or would have issues. The idea is that shortly after delivery she will be given an IV of prostaglandin (medicine to keep her heart ductus open) to prolong her fetal circulatory state until surgery and then surgery will stabilize her blood flow until she's a little bigger to take on some more serious re-plumbing.
I understand, we are blessed. Blessed to know what we are up against, and blessed to have the time, opportunity and resources to put together a game plan before she ever makes her debut. Perhaps even more blessed to have all of our immediate family intact, ready and willing to help and most importantly LOCAL. Maybe it was fortuitous that we got all this news in the week of Thanksgiving.
Aside from all of those blessings and thanks I did have quite the interesting week observing our families reactions. Some thought we would call off Thanksgiving because of all the news, some assumed that it was a hush hush topic and others didn't talk about it at all even if I broached the subject. I felt like a jerk with the super optimistic people who felt like it could be just all a misunderstanding, a mistake perhaps that would clearly sort itself out once she was born. I would smile and nod but cautiously explain that I had seen the ultrasounds for myself, seen her little heart pump all over except in that lower left corner that just sat still. But still they hold out hope that maybe a miracle will happen. I am certainly not saying that we are too good for a miracle, by all means I hold out the slightest hope that this is somehow wrong and this happened because it was to serve as a lesson to us as parents of how precious Olivia would be to us, regardless of her still inside me or not. I just cannot 100% put all my faith and trust in that miracle because it would be a crushing blow to think that for the next few months and then still have to say "see you later" if and when the first surgery rolls around.
Friends were next, once the holiday weekend was over we started telling our closest friends. If I thought family was interesting, friends were moreso. You had the few that openly admitted they had absolutely nothing to say (props to them), some that looked like they may throw up at the thought of what I was saying, others offered to fly out at a moment's notice if we needed them and lastly the group that tried to buoy our spirits by focusing on the odd's. "85% is really good, I'm sure she'll be fine". I know 85% is good, there were many a test that I was stoked with an 85%; but I couldn't help thinking and even pointing out what their reactions would have been if that 85% was their child's life in the balance. Would that be enough? What is enough when you're talking about the odds and the life of a loved one?
Telling the Family
I'm a tell it how it is kind of girl, sometimes saying things without thinking how they may sound to ther other person; but in this particular case when telling family about Olivia's condition I think that was a Godsend. I had a grasp on what was wrong with her heart that made her different from other babies, what the general plan of attack was for treatment starting with a few hours after delivery; and a rough outline of what the survival rates were for her condition along each step of the way.
That's right, I said survival rates. Percentages and statistics have become a big part of all the jargon I've picked up along the way in the last few weeks. While congenital heart defects are the most common abnormality for any baby born in the US, Hypoplastic Left Heart Syndrome is the rarest of all treatable conditions. Approximately 10% of all cases of HLHS stem from a chromosomal or genetic defect, the rest are all flukes. Which bucket did we fall into.? At this point we didn't know hence the order for the amniocentesis. If in the event Olivia's HLHS was caused by an underlying genetic abnormality; then none of the surgeries would be an option and we would need to prepare to say goodbye before we even said hello.
I digress - back to telling family. I feel like telling the family was a lot like taking off a Band-Aid. You can be quick and get it over with a sting that lasts for a few seconds or you can make it as long and drawn out as painfully possible. I preferred the rip-it-off method. I would start out with how we came to the diagnosis of HLHS, what it meant for our baby and what the near future held. Of course answering any questions along the way and mostly finding myself comforting the other person and assuring them that things could be worse - which was completely and utterly true.
Now I will never be able to comprehend our parents reactions to our news...first we were telling them that their first grandchild - on both sides had this major heart issue that would require a serious of invasive open heart surgies, then we introduced them to Olivia Giuliana's picture of her sucking her thumb and let them all know that it was indeed a girl (quite a big deal on the Donnelly side); and most of all that we felt that there were no other issues but only time would tell. To their credit, no one had any serious meltdowns to our face. I had to smile when I was talking with my mom and gave her a half hug telling her that everything was going to be okay.
We went out to dinner with Brian's extended family that night and had a good time, but by 7 the day's events had caught up with us. We were exhausted and eager to get home. Once we got home, we were in bed within 5 minutes and passed out around 7:45. Brian had to be up early the next day to make up for missed time, so he left me at home to sleep in before I headed over to my parents to start Thanksgiving prep. Once he left, I cried for the 2nd time in two days which is a lot for me. I cried because I felt alone, I cried because I felt bad that Brian had to go to work and most of all I cried for our baby and what she was going to face. Again it really only lasted a few minutes and then I was over it once again.
I was looking forward to spending the day cooking with my dad, the overall Christmas kickoff and of course Black Friday with all the ladies in the family. By that point on Wednesday I had already well figured out that it would do Olivia no good for me to get all emotionally wrought with emotion, in fact it may harm her worse...so I had adopted the approach of "it is what it is".
That's right, I said survival rates. Percentages and statistics have become a big part of all the jargon I've picked up along the way in the last few weeks. While congenital heart defects are the most common abnormality for any baby born in the US, Hypoplastic Left Heart Syndrome is the rarest of all treatable conditions. Approximately 10% of all cases of HLHS stem from a chromosomal or genetic defect, the rest are all flukes. Which bucket did we fall into.? At this point we didn't know hence the order for the amniocentesis. If in the event Olivia's HLHS was caused by an underlying genetic abnormality; then none of the surgeries would be an option and we would need to prepare to say goodbye before we even said hello.
I digress - back to telling family. I feel like telling the family was a lot like taking off a Band-Aid. You can be quick and get it over with a sting that lasts for a few seconds or you can make it as long and drawn out as painfully possible. I preferred the rip-it-off method. I would start out with how we came to the diagnosis of HLHS, what it meant for our baby and what the near future held. Of course answering any questions along the way and mostly finding myself comforting the other person and assuring them that things could be worse - which was completely and utterly true.
Now I will never be able to comprehend our parents reactions to our news...first we were telling them that their first grandchild - on both sides had this major heart issue that would require a serious of invasive open heart surgies, then we introduced them to Olivia Giuliana's picture of her sucking her thumb and let them all know that it was indeed a girl (quite a big deal on the Donnelly side); and most of all that we felt that there were no other issues but only time would tell. To their credit, no one had any serious meltdowns to our face. I had to smile when I was talking with my mom and gave her a half hug telling her that everything was going to be okay.
We went out to dinner with Brian's extended family that night and had a good time, but by 7 the day's events had caught up with us. We were exhausted and eager to get home. Once we got home, we were in bed within 5 minutes and passed out around 7:45. Brian had to be up early the next day to make up for missed time, so he left me at home to sleep in before I headed over to my parents to start Thanksgiving prep. Once he left, I cried for the 2nd time in two days which is a lot for me. I cried because I felt alone, I cried because I felt bad that Brian had to go to work and most of all I cried for our baby and what she was going to face. Again it really only lasted a few minutes and then I was over it once again.
I was looking forward to spending the day cooking with my dad, the overall Christmas kickoff and of course Black Friday with all the ladies in the family. By that point on Wednesday I had already well figured out that it would do Olivia no good for me to get all emotionally wrought with emotion, in fact it may harm her worse...so I had adopted the approach of "it is what it is".
Pediatric Cardiologist Appointment 11/27
After we flew out of the Perinatologist's office we got in the car and started on our way to Illinois Masonic downtown for our next appointment. Bosses and parents had to be called to let them know there was a change of plans and neither of us would be making it in to the office for the rest of the day. I drove because A. I'm a faster driver (aka Mario Andretti) and time was of the essence and B. I find driving to be calming for me, so it was probably best overall.
One of the first things Brian and I both said and agreed on within those first few minutes was that no matter what the defect might be, we just want her to have a good fighting chance. To think that it could have been something fatal at that moment almost didn't compute with us. At least we were on the same page and we continued down the highway continuing to make calls to all relevant parties and let them know what we were up against and that we were seeking more information.
Once we finally got to Illinois Masonic, we sat once again (this has been quite the trend these days). In fact, we sat so long that the Peds Cardiologist actually called my name and asked me to go get lunch to kill some more time because she was running behind - although she did admit that she had ulterior motives as the food would energize the baby and probably get her to position herself better where her chest cavity would be in a friendlier ultrasound position. So fine, we went and grabbed lunch and despite the morning's chaos I ate and enjoyed it (for anyone who's curious - it was Eggplant Parmesan).
Eventually we made it back up to the office and they took me in relatively quickly. I had to have another ultrasound so we hung out there with another Radiologist Tech while she scanned me and took pictures of the baby. At one point, she even managed to get us a couple of pictures where Olivia was happily sucking her thumb while we were poking and proding her. Eventually Dr. Cuneo made her way in and started to review all the pictures from each angle before she started to talk. Essentially our baby did not have a functioning left ventricle; it was there but it had stopped developing many weeks prior to my 20 week ultrasound, and once it stopped working, there was nothing that was ever going to make it work again. That being said, she continued to talk relatively quickly before either of us could lose our lunch and explain that although this is a rare heart defect; there are treatments in the way of a 3-series surgery that starts with birth and end around age 2 or 3.
Scan over, we were ushered into a regular treatment room where she took a diagram of the heart and started to show us what the differences were between Olivia's heart and a regular heart. The condition had a name - it is Hypoplastic Left Heart Syndrome. I think either Brian or I (maybe both of us) were either in shock or disbelief based on our calm behavior because she felt the need to reiterate that this was a serious condition and one that meant a long road ahead of us and moreso for Olivia. We nodded and said that we understood, but a few hours earlier when we were looking at a fatal prognosis, this Left Heart thingy sounded like she at least had the fighting chance that we were both trying to manifest out of thin air.
She was great, she sat there answering our questions and most importantly assuring us that although the diagnosis was serious, most of these babies/kids lead normal healthy lives with great quality of life. Sigh, end of story, that right there gave me pretty much all the peace of mind that I needed to get me through the next couple of weeks. We left shortly thereafter with a game plan to get in touch with the leading Pediatric Cardio-thoracic surgeon, get an amniocentesis and start lining up our ducks regarding delivery options, etc. She even gave us her personal cell phone # in the event that we had any other questions or concerns that might come up in the following days. All in all we left with a much more positive attitude than we had arrived with earlier in the day.
One of the first things Brian and I both said and agreed on within those first few minutes was that no matter what the defect might be, we just want her to have a good fighting chance. To think that it could have been something fatal at that moment almost didn't compute with us. At least we were on the same page and we continued down the highway continuing to make calls to all relevant parties and let them know what we were up against and that we were seeking more information.
Once we finally got to Illinois Masonic, we sat once again (this has been quite the trend these days). In fact, we sat so long that the Peds Cardiologist actually called my name and asked me to go get lunch to kill some more time because she was running behind - although she did admit that she had ulterior motives as the food would energize the baby and probably get her to position herself better where her chest cavity would be in a friendlier ultrasound position. So fine, we went and grabbed lunch and despite the morning's chaos I ate and enjoyed it (for anyone who's curious - it was Eggplant Parmesan).
Eventually we made it back up to the office and they took me in relatively quickly. I had to have another ultrasound so we hung out there with another Radiologist Tech while she scanned me and took pictures of the baby. At one point, she even managed to get us a couple of pictures where Olivia was happily sucking her thumb while we were poking and proding her. Eventually Dr. Cuneo made her way in and started to review all the pictures from each angle before she started to talk. Essentially our baby did not have a functioning left ventricle; it was there but it had stopped developing many weeks prior to my 20 week ultrasound, and once it stopped working, there was nothing that was ever going to make it work again. That being said, she continued to talk relatively quickly before either of us could lose our lunch and explain that although this is a rare heart defect; there are treatments in the way of a 3-series surgery that starts with birth and end around age 2 or 3.
Scan over, we were ushered into a regular treatment room where she took a diagram of the heart and started to show us what the differences were between Olivia's heart and a regular heart. The condition had a name - it is Hypoplastic Left Heart Syndrome. I think either Brian or I (maybe both of us) were either in shock or disbelief based on our calm behavior because she felt the need to reiterate that this was a serious condition and one that meant a long road ahead of us and moreso for Olivia. We nodded and said that we understood, but a few hours earlier when we were looking at a fatal prognosis, this Left Heart thingy sounded like she at least had the fighting chance that we were both trying to manifest out of thin air.
She was great, she sat there answering our questions and most importantly assuring us that although the diagnosis was serious, most of these babies/kids lead normal healthy lives with great quality of life. Sigh, end of story, that right there gave me pretty much all the peace of mind that I needed to get me through the next couple of weeks. We left shortly thereafter with a game plan to get in touch with the leading Pediatric Cardio-thoracic surgeon, get an amniocentesis and start lining up our ducks regarding delivery options, etc. She even gave us her personal cell phone # in the event that we had any other questions or concerns that might come up in the following days. All in all we left with a much more positive attitude than we had arrived with earlier in the day.
Perinatolgist Appointment 11/27
After much diddling around we were finally set for our Level 2 ultrasound with the Perinatologist for Tuesday, 11/27 which was also a couple of days before Thanksgiving. Brian and I set it for first thing in the morning so that we could get into the office with most of the day left. Again, this appointment started off as swell (sarcasm) as all my other appointments have gone during this pregnancy. Paperwork wasn't readily available, the office manager was late to the office, blah blah blah.
Finally!!! They call us back for the ultrasound about 25 minutes later (we were the first appointment of the morning, so I don't want to hear the excuse well they were behind because of other patients). My butterflies are now the size of 747's, but the nurse comes in to take my vitals and she's very sweet so I'm feeling better. Dr. Taylor comes in to do the scan and explains that he is going to be reviewing the heart structure very closely looking for the irregular heartbeat, so don't worry if he's not interacting with us. I think "Phew, this is good, glad he told us that up front so we don't start freaking out".
About 30 minutes later while Brian and I have been chatting and I've been checking out the scuffs on my favorite red shoes; Dr. Taylor tells us he's done with the scan. He starts talking and the tears are already coming out of my eyes. I'd seen the face of the Radiologist at the last visit and his looks worse. Essentially it went something like this "I see an abnormality with your baby's heart, it could be a benign tumor in the wall of her heart muscle or it could be the absence of some vital vessels and structures; I'd like to recommend that you see a Pediatric Cardiologist that specializes in ultrasounds and EKG's on fetuses". I ask for more information regarding everything he's just listed and he explains more "The tumor would be nothing to worry about most resolve themselves before delivery, if she's missing vital structures of the heart then the abnormality could be fatal". He left Brian and I alone at that moment to go call a couple of the Pediatric Cardiologists in the state and see if they could get us in for a certain diagnosis; and I lost it.
I thought of all the moments that I had said the experience was overrated, the times when I semi-joked that I was one and done with having babies preferring the thought of adoption in the future, the complaints about gaining weight (overall vanity), etc etc. Just generally a feeling of self loathing about how in the world my baby could have such a catastrophic defect and I felt absolutely fine. Brian to all his credit was totally cool and comforted me, dried my tears and the episode was over in a matter of minutes like I had fallen down, scraped my knee and gotten back up on the bike. Dr. Taylor came back in at that moment and said he had spoken with one of the Peds Cardiologist and she was available that day to see us if we could make it downtown within the next hour and a half. We said absolutely and jetted out of the office to see what fate really had in store for our baby girl.
Finally!!! They call us back for the ultrasound about 25 minutes later (we were the first appointment of the morning, so I don't want to hear the excuse well they were behind because of other patients). My butterflies are now the size of 747's, but the nurse comes in to take my vitals and she's very sweet so I'm feeling better. Dr. Taylor comes in to do the scan and explains that he is going to be reviewing the heart structure very closely looking for the irregular heartbeat, so don't worry if he's not interacting with us. I think "Phew, this is good, glad he told us that up front so we don't start freaking out".
About 30 minutes later while Brian and I have been chatting and I've been checking out the scuffs on my favorite red shoes; Dr. Taylor tells us he's done with the scan. He starts talking and the tears are already coming out of my eyes. I'd seen the face of the Radiologist at the last visit and his looks worse. Essentially it went something like this "I see an abnormality with your baby's heart, it could be a benign tumor in the wall of her heart muscle or it could be the absence of some vital vessels and structures; I'd like to recommend that you see a Pediatric Cardiologist that specializes in ultrasounds and EKG's on fetuses". I ask for more information regarding everything he's just listed and he explains more "The tumor would be nothing to worry about most resolve themselves before delivery, if she's missing vital structures of the heart then the abnormality could be fatal". He left Brian and I alone at that moment to go call a couple of the Pediatric Cardiologists in the state and see if they could get us in for a certain diagnosis; and I lost it.
I thought of all the moments that I had said the experience was overrated, the times when I semi-joked that I was one and done with having babies preferring the thought of adoption in the future, the complaints about gaining weight (overall vanity), etc etc. Just generally a feeling of self loathing about how in the world my baby could have such a catastrophic defect and I felt absolutely fine. Brian to all his credit was totally cool and comforted me, dried my tears and the episode was over in a matter of minutes like I had fallen down, scraped my knee and gotten back up on the bike. Dr. Taylor came back in at that moment and said he had spoken with one of the Peds Cardiologist and she was available that day to see us if we could make it downtown within the next hour and a half. We said absolutely and jetted out of the office to see what fate really had in store for our baby girl.
The Beginning...
We were well on our way down the road to "Happily Ever After" as cliche as that sounds...sure we've had our ups and downs, but generally over the past 13 years Brian and I have had it pretty easy together going from best friends, to happily engaged couple, and then eventually settling into a comfortable married life.
We bought our first house together last year and even that was a breeze, it was the very first one we looked at! When we decided that maybe it was time to have a baby this year, 2 months later one was on the way. Generally speaking, we've had the world in the palm of our hands and sometimes I'm sure we didn't really appreciate it as much as we could have or should have.
My pregnancy started off completely uneventful less the all day "hangover" feeling that I had from weeks 4-12, but even that went away at the end of week 12...pretty much textbook. My OB office left something to be desired, but oh well. Our first ultrasound at 10 weeks showed a perferct normal healthy baby doing sumersaults that looked a little exhausting to me, but the point was, there was nothing amiss.
Already, at this point I had this weird feeling in the pit of my stomach that something wasn't going to go right with this pregnancy. It was something that I laid awake thinking about endlessly those first 12 weeks, something that I don't even know if I could explain to Brian if I had tried to put it all into words. Everything had just been too easy up to that point and we were happily anticipating the future and all that this new baby would bring to our lives as we left the world of DINKs and entered family life.
Weeks went by and by week 13 I was feeling good, able to do whatever I wanted without feeling the seasick/hungover feeling anymore. Things progressed at a good pace, my clothes stopped fitting around this time and I had to get maternity clothes which I thought was a real drag. In fact, my new favorite phrase about pregnancy became "Overrated - I don't know how women continue to do this to themselves over and over again". I would openly acknowledge that I by no means was having an even remotely difficult pregnancy, it just wasn't something I was enjoying much for whatever reason.
I was however looking forward to our 20 week ultrasound to see the baby and our biggest concern was did we want to find out the gender or leave it to be a delivery surprise. The ultrasound technician starts the scan and all looks well, baby is still moving nicely, 10 fingers, 10 toes, all the typical stuff that you're supposed to see. Now did we want to know the gender - yes...please tell us the gender (I'm thinking in my head if I know the gender and this baby has a name - then maybe I will be able to bond with he/she more now that they have their own identity). It's a girl!!! She will be Olivia Giuliana (a name that I have had since I was about 17 years old). We are giddy and then she asks us if I had my OB appointment to follow, which we don't so then she takes us into an extra office to wait for someone while we continue to talk all about the things Olivia is going to go in the future.
The nurse/midwife walks in and sits down with us carefully explaining that the Ultrasound Technician thinks Olivia might have exhibited signs of an irregular heartbeat during the ultrasound so they want to send us to a Perinatologist for a level 2 scan and make sure nothing is going on that shouldn't be. We smile, take the order for the scan and walk out not giving it much of a second thought. As we were leaving I see the Ultrasound Technician at the front desk and I knew. I knew that she was not giving me a look of a mother of a healthy baby, that something had come up on that ultrasound that was going to change our lives forever.
We bought our first house together last year and even that was a breeze, it was the very first one we looked at! When we decided that maybe it was time to have a baby this year, 2 months later one was on the way. Generally speaking, we've had the world in the palm of our hands and sometimes I'm sure we didn't really appreciate it as much as we could have or should have.
My pregnancy started off completely uneventful less the all day "hangover" feeling that I had from weeks 4-12, but even that went away at the end of week 12...pretty much textbook. My OB office left something to be desired, but oh well. Our first ultrasound at 10 weeks showed a perferct normal healthy baby doing sumersaults that looked a little exhausting to me, but the point was, there was nothing amiss.
Already, at this point I had this weird feeling in the pit of my stomach that something wasn't going to go right with this pregnancy. It was something that I laid awake thinking about endlessly those first 12 weeks, something that I don't even know if I could explain to Brian if I had tried to put it all into words. Everything had just been too easy up to that point and we were happily anticipating the future and all that this new baby would bring to our lives as we left the world of DINKs and entered family life.
Weeks went by and by week 13 I was feeling good, able to do whatever I wanted without feeling the seasick/hungover feeling anymore. Things progressed at a good pace, my clothes stopped fitting around this time and I had to get maternity clothes which I thought was a real drag. In fact, my new favorite phrase about pregnancy became "Overrated - I don't know how women continue to do this to themselves over and over again". I would openly acknowledge that I by no means was having an even remotely difficult pregnancy, it just wasn't something I was enjoying much for whatever reason.
I was however looking forward to our 20 week ultrasound to see the baby and our biggest concern was did we want to find out the gender or leave it to be a delivery surprise. The ultrasound technician starts the scan and all looks well, baby is still moving nicely, 10 fingers, 10 toes, all the typical stuff that you're supposed to see. Now did we want to know the gender - yes...please tell us the gender (I'm thinking in my head if I know the gender and this baby has a name - then maybe I will be able to bond with he/she more now that they have their own identity). It's a girl!!! She will be Olivia Giuliana (a name that I have had since I was about 17 years old). We are giddy and then she asks us if I had my OB appointment to follow, which we don't so then she takes us into an extra office to wait for someone while we continue to talk all about the things Olivia is going to go in the future.
The nurse/midwife walks in and sits down with us carefully explaining that the Ultrasound Technician thinks Olivia might have exhibited signs of an irregular heartbeat during the ultrasound so they want to send us to a Perinatologist for a level 2 scan and make sure nothing is going on that shouldn't be. We smile, take the order for the scan and walk out not giving it much of a second thought. As we were leaving I see the Ultrasound Technician at the front desk and I knew. I knew that she was not giving me a look of a mother of a healthy baby, that something had come up on that ultrasound that was going to change our lives forever.
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