I suppose most babies by now are enjoying the warm embrace of their parents, wrapped up tight in blankets, and content with being passed around friends and family members. But Jonah gets the special treatment and has the best cardiologists, neonatologists, surgeons and nurses working around the clock to keep him healthy.
Stacie was moved from labor & delivery to a postpartum recovery room just down the hall (and still close to NICU). The room is a little smaller and I get a poor man's lazy boy to sleep in, but at least there is a shower. Her fainting spell took quite a toll, but Stacie is feeling better and is much more alert than before. Around 8:30pm, Mr. Schwab and I drove down the street to get burgers and Italian beef sandwiches from Portillo's. Stacie originally requested McDonalds, but the least we could do was raise it up a notch after the day she had. Wolfing down a good burger definitely brought her back to life.
Before dinner, I did take Mr. and Mrs. Schwab over to the NICU to visit Jonah. There are rules. 1) Must scrub arms for 2 minutes from fingers to elbows. There is even a finger nail pick. 2) Gown must be worn. 3) Only 2 visitors at a time and 1 of those must be a parent. 4) All cell phones must be turned off.
Mr. Schwab and I went first. The nurse taking care of Jonah immediately overwhelmed me with medical jargon. That's all right, I told her she would have to repeat all this to my wife the RN. I could see Jonah intubated and other various tubes and cords running all over his body. He's hooked up to a good handful of computers, all displaying different graphs, lines, numbers, beeps and blinkies on the monitors. Other than that, he looks really good. He looks bigger than 6lbs 11oz, he has blond hair, and he already needs his nails trimmed!
The nurse explained that he would be getting an echo cardiogram tonight and that the cardiologist could discuss the results asap. Well, the cardiologist fellow just stopped by our room and spent a good 30 minutes talking with us. The first impression of Jason was awesome (just like everyone else we've met here). Although he basically confirmed much of the same diagnosis that was discovered inutero, he was very optimistic of Jonah's overall condition. Jonah's sats (i.e. oxygen saturations in the blood) we're high, which means he has too much blood circulating through his lungs and not enough circulating throughout the rest of his body. By intubating him, they can better control this. He's on Prostaglandin to keep the PDA hole open. He's on Fentanyl and Versed to keep him sedated and comfortable. Also, we had to sign our first consent form for an invasive procedure. They were hoping to use the umbilical artery to draw blood, however the artery clamped down before they could insert the catheter (which is normal). So as an alternative, they will do what's called a femoral line in his groin tonight.
So Jonah's first few hours in this life have been unique to say the least. Thank God we can sleep tonight knowing he's a fighter and he's in the best of hands. Tomorrow, our goal is to get Stacie into a wheelchair and wheel her over to visit Jonah in the NICU. I will also work on getting pictures posted, but I forgot the digital camera's USB cable back home - guess we all have to settle with cell phone quality the next couple days.
How old am I?
Saturday, July 31, 2010
Friday, July 30, 2010
He's Here!
Wow. That was indescribable. Stacie did awesome - I love her so much. Things moved really quickly since the last post. The epidural again started to wear off on the right side and she struggled with the pain - luckily they gave her a little boost, but she was completely dilated and around 3:30 she was ready to push. At 4:31, Jonah entered this world vocal and full of color. The room was filled with doctors, residents, nurses - seemed like organized chaos. As they cleaned Jonah up behind the curtain, we just waited to hear more crying - and every now and then Jonah obliged. Meanwhile, they continued to work on Stacie for another 45 minutes or so as she did tear. Finally they brought out Jonah all wrapped up, and we got to hold him for a couple minutes. He's 6 pounds, 11 ounces. We snapped a couple photos before Jonah was rushed to the NICU.
It seemed like forever to stitch Stacie back up, but by the time they were done Stacie was so exhausted she passed out and gave us a little scare. They hooked her up on some oxygen and told us her vitals were fine. Color eventually came back to her face and she regained consciousness. Now she's just resting. They gave her some food, but she doesn't have enough energy yet to eat.
It was an awesome day - and so far so good - it couldn't have gone any better. Thanks again for all your thoughts, prayers and support. We love you all!
Hopefully we'll get some updates on how Jonah's doing soon.
It seemed like forever to stitch Stacie back up, but by the time they were done Stacie was so exhausted she passed out and gave us a little scare. They hooked her up on some oxygen and told us her vitals were fine. Color eventually came back to her face and she regained consciousness. Now she's just resting. They gave her some food, but she doesn't have enough energy yet to eat.
It was an awesome day - and so far so good - it couldn't have gone any better. Thanks again for all your thoughts, prayers and support. We love you all!
Hopefully we'll get some updates on how Jonah's doing soon.
8cm!
Last exam showed some good progress. 8cm...next check in 2hrs unless she starts feeling like she has to push. Had a brief pukey-pukey from the epidural and the contractions are still painful on the right side. Other than that, she's hanging in there and in a good state of mind!
Baby Steps
Not a whole lot to update. The epidural seemed to only numb her left side. Her right side was getting more painful with each contraction. The anesthesiologist came back and tweaked it a bit. She's doing much better now. They also examined her again...5-6 cm...slowly progressing. Next exam will be around 2:30-3pm.
Brian and Allison (Stacie's brother and sister) just stopped by to give us some company. We're starting to get a little stir crazy. Maybe a coffee and some fresh air is in order.
Brian and Allison (Stacie's brother and sister) just stopped by to give us some company. We're starting to get a little stir crazy. Maybe a coffee and some fresh air is in order.
Epidural In, Water Out
Epidural is in. They kicked me out of the room, but Stacie said it went very smoothly. They also broke her water. She is comfortable - the epidural has taken the weight off and will also allieve her chronic calf /leg cramps. They are not increasing the Pitocin since they are content with the contractions. She is still 4-5cm dilated. Overall, they're happy with how things are progressing and are saying she is in a good place.
We got the iPod playing in the room and just enjoying the calm before the storm.
We got the iPod playing in the room and just enjoying the calm before the storm.
Morning
We actually got a few hours of sleep last night. The Pitocin was working quickly, so they decided to slow it down because they wanted the full pediatric cardiology team on hand. I guess some were on call overnight, but it's better to wait until everyone shows up at the office. Otherwise, I think Dr. Davis would have been right on with his ETA.
Now we're waiting for the doctors to come in and tell us their game plan for the day. Stacie is feeling the contractions now....I would say every 2-3 minutes. She is 4cm dilated. They'll probably increase the Pitocin and then the epidural will follow shortly.
Will post once we know more.
Now we're waiting for the doctors to come in and tell us their game plan for the day. Stacie is feeling the contractions now....I would say every 2-3 minutes. She is 4cm dilated. They'll probably increase the Pitocin and then the epidural will follow shortly.
Will post once we know more.
We're Here
Got the call around 7ish that we could come into the hospital between 9 and 10pm. We showed up fashionably late, in classic Schwab fashion, at 10:20pm. Luckily they were still cleaning and getting our room ready, so we didn't get into any trouble.
First, the nurse and resident checked Stacie's cervix, and, to our surprise, she is 2-3 centimeters dilated and 70% effaced. This means she does NOT need the medication to help "open the door", instead Stacie is ready for the Pitocine (the hormone that induces labor). In fact, she is already getting the Pitocine as I write this. The dose starts low and they increase every 15-30 minutes until the contractions are 2-3 minutes a part and intensify.
They are telling her she can get the epidural at any point now, but I think we are waiting until the Pitocine kicks in and she starts to feel moderate pain. From a timing perspective, we feel like we just skipped a good 12 hrs as we were not planning on the induction process starting until tomorrow mid-late morning. Instead of starting the induction process Friday morning, we could be in the middle of delivery. The nurse says Pitocine effects everyone differently, making it unpredictable when labor will really start, but Dr. Davis predicts we could be in labor by 8-9am.
The room is nice, it seems spacious and I have got a nice couch/cot thing that has some sheets and is actually quite comfy. However, I don't think we will be sleeping much tonight (it's already 1:46am) since we have the nurse checking in every 15-20 minutes.
I will try to keep the updates flowing, but the internet has been a little tricky here, so no promises.
Rob
First, the nurse and resident checked Stacie's cervix, and, to our surprise, she is 2-3 centimeters dilated and 70% effaced. This means she does NOT need the medication to help "open the door", instead Stacie is ready for the Pitocine (the hormone that induces labor). In fact, she is already getting the Pitocine as I write this. The dose starts low and they increase every 15-30 minutes until the contractions are 2-3 minutes a part and intensify.
They are telling her she can get the epidural at any point now, but I think we are waiting until the Pitocine kicks in and she starts to feel moderate pain. From a timing perspective, we feel like we just skipped a good 12 hrs as we were not planning on the induction process starting until tomorrow mid-late morning. Instead of starting the induction process Friday morning, we could be in the middle of delivery. The nurse says Pitocine effects everyone differently, making it unpredictable when labor will really start, but Dr. Davis predicts we could be in labor by 8-9am.
The room is nice, it seems spacious and I have got a nice couch/cot thing that has some sheets and is actually quite comfy. However, I don't think we will be sleeping much tonight (it's already 1:46am) since we have the nurse checking in every 15-20 minutes.
I will try to keep the updates flowing, but the internet has been a little tricky here, so no promises.
Rob
Thursday, July 29, 2010
From the Beginning...
Before moving on to tomorrow when we begin a whole new chapter of this story, Rob and I feel it is so important to share with you how we have come to this point, to tell our "diagnosis story". Also, by doing this Rob and I are reminded of the good decisions that we feel we have made so far and it makes facing the unknown a little easier to rest with.
To tell you only how Jonah was diagnosed with HLHS would just be part of the story. So much happened before that which validates for us that we have never (and never will be) in control of this situation. Here's a brief look at the year 2010 so far...
January- First move from Minneapolis to the Chicagoland area, Rob started his new job Jan. 4th, I started at Children's Memorial (as an RN) on Jan.25th. Temporarily stayed at my grandma's house after she moved out; commuting by train from Joliet to downtown Chicago. Worst part: getting off work at 5pm and not getting back until 8pm. Best part: living next door to my sister, brother-in-law, and adorable niece Nola; and 15min from my parents. Sasha was living the best life ever too with having Lily to hang out with all day!
February thru March- Began the hunt for a new house. Closed on our house in MPLS on Mar. 30th and drove back with the rest of our belongings-2nd move. Now this is where it gets interesting...we were supposed to have our 20wk u/s on the morning of Mar. 26th and from there drive up to MN. The OB office calls to cancel. We then go on our merry way after rescheduling the appt. for the next available date.
April- The u/s is all set for April 3rd...a Saturday, in the main radiology department of the hospital (which we now understand was not the best plan because this department is not specialized enough for OB). Honestly, this was the worst day of our lives. The worst experience of our lives. Going into the u/s we knew what to expect, what to look for and what questions to ask. It started out just fine, but quickly got very awkward and tense as the technician's demeanor completely changed. She saw something. Something wrong. We were able to pick up on this and began firing some pretty loaded questions. She is not able to give us any specific information, but above many other things says "Don't worry, we have an excellent Perinatologist team here". Rob and I look at each other and wonder why the heck she is saying this to us!!! If there is nothing to be concerned about, as she was attempting to make us feel, then why do we even need to know this? We leave wtih absolutely no info, didn't talk with a doctor, and had to wait until Monday to get results. Happy Easter.
After all of this, the sex of this baby was the last thing on our minds. We were planning a fun way to discover this big anouncement. Now completely lost, we saved the u/s photo, the "proof", and opened it with my family while coloring Easter eggs. IT'S A BOY!!
Finally Monday, my OB calls me at work and tells me he is not able to visualize 4 chambers of the heart and that we must get a Level II u/s asap. The next day, Tuesday, April 6th we get the devestating, take-your-breath-away news that our little boy has Hypoplastic Left Heart Syndrome. Wednesday, April 7th we close on our new house in Downers Grove.
May- May 1st we were able to move into our new house in the very family-friendly village of Downers Grove. May 7th we met the man who can fix Jonah's heart. That is of course, Dr. Michel Ilbawi. Rob has previously mentioned how skilled and capable Dr. Ilbawi is, but I want to also mention what an incredible human being he is!! I literally could go on and on about this:) But, the link we previously attached gives you a quick glimpse.
May through present- Taking it one day at a time. What else could we do? Everything, and I mean everything, is to be determined on what Jonah presents us with when he enters this world. All we can do is lean on the support of our family and friends while continuing to look to God for His glory in all of this . We relish in the moments of excitement when we can, get angry and frustrated as we feel so out of control, and shed very private tears and talk about all of the "what if's" while doing the simple things we enjoy...like taking Sasha for a walk. :)
Before wrapping this up, we should go back to the mention our other two options: termination and compassionate care. When the diagnosis was initially made, we had a week to decide AND act if wished for a legal termination in the state of Illinois. While having agonizing conversations about the ramifications of termination and compassionate care, a series of events took place that left quite an impact on us. Part of that was finally feeling Jonah move for the first time. Within a very short time, I became somewhat disconnected from this pregnancy. But actually feeling the miracle of life...to begin building a bond...we could not deny that fact that Jonah was knocking on our heart's door, letting us know he was up for the fight.
To tell you only how Jonah was diagnosed with HLHS would just be part of the story. So much happened before that which validates for us that we have never (and never will be) in control of this situation. Here's a brief look at the year 2010 so far...
January- First move from Minneapolis to the Chicagoland area, Rob started his new job Jan. 4th, I started at Children's Memorial (as an RN) on Jan.25th. Temporarily stayed at my grandma's house after she moved out; commuting by train from Joliet to downtown Chicago. Worst part: getting off work at 5pm and not getting back until 8pm. Best part: living next door to my sister, brother-in-law, and adorable niece Nola; and 15min from my parents. Sasha was living the best life ever too with having Lily to hang out with all day!
February thru March- Began the hunt for a new house. Closed on our house in MPLS on Mar. 30th and drove back with the rest of our belongings-2nd move. Now this is where it gets interesting...we were supposed to have our 20wk u/s on the morning of Mar. 26th and from there drive up to MN. The OB office calls to cancel. We then go on our merry way after rescheduling the appt. for the next available date.
April- The u/s is all set for April 3rd...a Saturday, in the main radiology department of the hospital (which we now understand was not the best plan because this department is not specialized enough for OB). Honestly, this was the worst day of our lives. The worst experience of our lives. Going into the u/s we knew what to expect, what to look for and what questions to ask. It started out just fine, but quickly got very awkward and tense as the technician's demeanor completely changed. She saw something. Something wrong. We were able to pick up on this and began firing some pretty loaded questions. She is not able to give us any specific information, but above many other things says "Don't worry, we have an excellent Perinatologist team here". Rob and I look at each other and wonder why the heck she is saying this to us!!! If there is nothing to be concerned about, as she was attempting to make us feel, then why do we even need to know this? We leave wtih absolutely no info, didn't talk with a doctor, and had to wait until Monday to get results. Happy Easter.
After all of this, the sex of this baby was the last thing on our minds. We were planning a fun way to discover this big anouncement. Now completely lost, we saved the u/s photo, the "proof", and opened it with my family while coloring Easter eggs. IT'S A BOY!!
Finally Monday, my OB calls me at work and tells me he is not able to visualize 4 chambers of the heart and that we must get a Level II u/s asap. The next day, Tuesday, April 6th we get the devestating, take-your-breath-away news that our little boy has Hypoplastic Left Heart Syndrome. Wednesday, April 7th we close on our new house in Downers Grove.
May- May 1st we were able to move into our new house in the very family-friendly village of Downers Grove. May 7th we met the man who can fix Jonah's heart. That is of course, Dr. Michel Ilbawi. Rob has previously mentioned how skilled and capable Dr. Ilbawi is, but I want to also mention what an incredible human being he is!! I literally could go on and on about this:) But, the link we previously attached gives you a quick glimpse.
May through present- Taking it one day at a time. What else could we do? Everything, and I mean everything, is to be determined on what Jonah presents us with when he enters this world. All we can do is lean on the support of our family and friends while continuing to look to God for His glory in all of this . We relish in the moments of excitement when we can, get angry and frustrated as we feel so out of control, and shed very private tears and talk about all of the "what if's" while doing the simple things we enjoy...like taking Sasha for a walk. :)
Before wrapping this up, we should go back to the mention our other two options: termination and compassionate care. When the diagnosis was initially made, we had a week to decide AND act if wished for a legal termination in the state of Illinois. While having agonizing conversations about the ramifications of termination and compassionate care, a series of events took place that left quite an impact on us. Part of that was finally feeling Jonah move for the first time. Within a very short time, I became somewhat disconnected from this pregnancy. But actually feeling the miracle of life...to begin building a bond...we could not deny that fact that Jonah was knocking on our heart's door, letting us know he was up for the fight.
Wednesday, July 28, 2010
T Minus 1 Day
Stacie has been going to Christ/Hope every Wednesdays for quite some time now, and this Wed was her last appointment. We met with the fetal cardiologist, Dr. Cuneo, at 9am and had a fetal cardiac ultrasound to make sure all the valves and ducts are staying open (PFO and PDA). Everything looked good, so on we went to meet with our Maternal Fetal Medicine (high-risk pregnancy specialists) team to determine how ready Stacie is for delivering Jonah. We were hoping to simply walk in on Friday and get induced (giving us one more day), but Dr. Suarez told us her cervix is not ready and that she needs to come in on Thur night to receive a hormone that helps "open the door", as the Dr. would describe to me. Obviously, they don't want to induce labor only to have the "door closed". It's funny, all the doctors when speaking directly to Stacie use their fancy medical jargon, but then they turn to me and use simple metaphors and anologies.
So...now we are starting to create a packing list and get organized: get Sasha (pic below) and her stuff situated, pay any mail/bills laying around, wrap up work, water plants, pick-up around the house, mow the lawn, organize iPods, call family, plan our Last Supper, etc.
Next step: the Labor and Delivery unit at Christ will call us at some point tomorrow and give us the time we should come in. We are thinking 8pm-ish, but it could be earlier or later I suppose based on the # of beds/rooms available.
Personally, I'm tired of waiting. I'm ready. But I know Stacie isn't quite mentally prepared to confront the road ahead of us just yet. She knows Jonah is safe in her belly, and once he's out he's gonna be fighting for his life. It's hard because for the last few months we have been so focused on the surgeries and what happens after, we have somewhat forgotten to prepare for the delivery process itself. I believe the biggest factor helping us is that we don't feel alone. We are so thankful to our friends and family - all your positive thoughts and prayers must be working, so keep it up!!
Monday, July 26, 2010
Shower
Co-authored :) We debated about even having a shower after learning about our son's diagnosis. From April through June, we decided no shower. For us it was hard to celebrate the unknown future of our son, so to receive gifts and throw a "party" with friends and family was the last thing we wanted to do. However, over time and as the due date approached, we became more accepting of the what lies ahead of us. Plus, the more time we had to discuss our situation with our friends and family, the easier it was to open up and accept their support.
So the shower was scheduled for Sunday, July 25 - five days before the scheduled induction, and invitations went out to those near and far. Minnesota represented well: Rob's mom, Paul, Heather, Evelyn and Buster and Dan, Shannon, Jordan, Gavin and Sam. The "locals" didn't disappoint either. It wasn't necessarily the "quiet weekend" that many couples might prefer on the eve of their first child, but that is not us. We really enjoyed having everyone around us, enjoying the energy and laughter. The girls drove down to the shower around 11am, while the boys began their own party. 3 guys, a 6 year old boy, twin 21 month old boys, and two dogs (Sasha and her boyfriend Buster). Luckily we had a break from the humidity, so it was a perfect day to let the kids and dogs burn their energy outside. After a couple cold beers, we took a walk down to the park. The twins played on the jungle gym while Paul passed on to Jordan his expertise of catching butterflies.
Meanwhile, the shower was perfect. It was hosted by Stacie's Aunts with the help of her mom and sister. It was actually very refreshing to have everyone gathered in one place mingling, eating, and sharing in the exciting anticipation of our Jonah. Throughout the entire shower it felt like the focus was all about everything a new baby should be....sharing stories of what worked/what didn't for others babies and just being able to say out loud "I can't wait until Jonah does this...or plays with that...". The generosity of everyone's gifts, also their overflowing love and support, was so incredibly humbling.
Overall, we could not have imagined preparing for Jonah's arrival any other way. Our many THANKS go out to those who were able to start this celebration with us and all of those that could not make it but are standing by ready and waiting for the big day to come!
So the shower was scheduled for Sunday, July 25 - five days before the scheduled induction, and invitations went out to those near and far. Minnesota represented well: Rob's mom, Paul, Heather, Evelyn and Buster and Dan, Shannon, Jordan, Gavin and Sam. The "locals" didn't disappoint either. It wasn't necessarily the "quiet weekend" that many couples might prefer on the eve of their first child, but that is not us. We really enjoyed having everyone around us, enjoying the energy and laughter. The girls drove down to the shower around 11am, while the boys began their own party. 3 guys, a 6 year old boy, twin 21 month old boys, and two dogs (Sasha and her boyfriend Buster). Luckily we had a break from the humidity, so it was a perfect day to let the kids and dogs burn their energy outside. After a couple cold beers, we took a walk down to the park. The twins played on the jungle gym while Paul passed on to Jordan his expertise of catching butterflies.
Meanwhile, the shower was perfect. It was hosted by Stacie's Aunts with the help of her mom and sister. It was actually very refreshing to have everyone gathered in one place mingling, eating, and sharing in the exciting anticipation of our Jonah. Throughout the entire shower it felt like the focus was all about everything a new baby should be....sharing stories of what worked/what didn't for others babies and just being able to say out loud "I can't wait until Jonah does this...or plays with that...". The generosity of everyone's gifts, also their overflowing love and support, was so incredibly humbling.
Overall, we could not have imagined preparing for Jonah's arrival any other way. Our many THANKS go out to those who were able to start this celebration with us and all of those that could not make it but are standing by ready and waiting for the big day to come!
Wednesday, July 21, 2010
Post #1
Wow, first I apologize for not getting this site set up sooner. Starting a blog was something Stacie and I discussed right after we found out, but it takes more time and energy than I had thought to sit down and spill your guts. We have been following a handful of other HLHS stories through this site, and they have been so informative and inspirational. Neither Stacie nor I have blogged, twittered or facebooked before, so why a blog now?
What is HLHS?
In infants born with HLHS (1 in every 4,000 or 0.025%) the left ventricle and the aorta are severely underdeveloped. The left ventricle is the lower-left chamber of the heart and is responsible for pumping oxygen-rich blood to the body. The aorta is the artery that receives oxygen-rich blood from the left ventricle and sends it through the body. When the left ventricle and the aorta are too small, they can't supply the body with enough blood. Although the babies are born looking completely healthy, HLHS is 100% fatal in the first week without surgery or heart transplantation.
Where are we at?
Stacie is 37 weeks and 5 days prego. All things considered, she's doing well. After a slight scare in mid-June, the doctors advised Stacie not to return to work (RN at Children's Memorial Hospital - Chicago). Since then she's been taking it easy, staying cool in the A/C, and getting a lot of rest. Her belly is big (in a good way :) and her feet and legs are sore, but overall she claims to have enjoyed the pregnancy. Now this strikes me as odd considering she vomited her way through the first half of the pregnancy, and lately she has been waking up in the middle of the night in shrieking pain with calf cramps.
Next Friday, July 30th, we will have a scheduled induction. This will trigger Stacie to go into labor, and we expect there will be nothing unusual about the labor and delivery process with the baby having HLHS. However, once Jonah is born, we will only be able to see/hold him for a short time before they will rush him to the NICU. In the NICU, they start a hormone called prostaglandin that helps regulate the blood flow. However, this medicine also causes respiratory distress, and thus requires the baby to be intubated until surgery. The Norwood procedure will occur sometime between day 3 and 5.
We are heading into next week with a mixture of excitement and fear. I'm sure this is a natural feeling for any expecting parents, but there is a known heart defect that is a matter of life and death. I had not heard of Hypoplastic Left Heart Syndrome (HLHS) prior to our diagnosis, but Stacie had and she knew all too well the seriousness of it when we were given the news. It was gut wrenching...physically and emotionally crippling to learn about what kind of heart our baby was given and what he would have to endure in order to have a chance at life. We will share our "diagnosis story" another time, but in a nutshell, we were given 3 choices.
Our decision was not easy, but in the end we found one of the top surgeons was right in our back yard: enter Dr. Ilbawi. To quote a recent documentary made about him:
"Michel Ilbawi, M.D., leads the pediatric heart surgical team at The Heart Institute for Children. Headquartered at Hope Children's Hospital in Oak Lawn, Illinois, they perform over 400 operations and care for more than 3,500 children with heart defects each year. With over 25 years experience as a pediatric heart surgeon and more than 20,000 surgeries performed, Dr. Ilbawi is nothing short of a miracle-worker to the families whose children he treats daily."
To learn more and see the trailer, go to http://www.heartsofhopethemovie.com/Home.html (we saw a special screening at Hope and have a copy if anyone wants to borrow it)
When we went to first consult with Dr. Ilbawi, we hadn't made our decision. Within the first minutes of meeting him, he told Stacie he would take care of her and be her "brother" throughout the process. We knew he was skilled, but it was his calming demeanor and obvious compassion and devotion for these kids and families that resonated with us. After the consultation, we knew we had to give the man a chance to save our son's life.
What do we know about the 3 surgeries?
Medically, the goals of the surgeries are:
Ok, I think that is a good Post #1 and a good kick-off for this blog. Hopefully you find it helpful. We will do our best to keep everyone updated via this site and we welcome any comments. We recognize this blog does not start at Day 1 of our journey, so we will make an effort to share the diagnosis story and others that have led us to where we are at now. We know how much it helped to read other stories starting at the point of diagnosis.
- We needed a vehicle to communicate updates and share stories and pictures to our friends and family as we know this will be a long journey and there will be plenty of twists and turns.
- We wanted a means to connect with other heart families going through similar diagnosis and stages.
- We wanted to have a journal to look back & reflect, and perhaps one day share with Jonah.
- There's probably a therapeutic element to blogging.
What is HLHS?
In infants born with HLHS (1 in every 4,000 or 0.025%) the left ventricle and the aorta are severely underdeveloped. The left ventricle is the lower-left chamber of the heart and is responsible for pumping oxygen-rich blood to the body. The aorta is the artery that receives oxygen-rich blood from the left ventricle and sends it through the body. When the left ventricle and the aorta are too small, they can't supply the body with enough blood. Although the babies are born looking completely healthy, HLHS is 100% fatal in the first week without surgery or heart transplantation.
Where are we at?
Stacie is 37 weeks and 5 days prego. All things considered, she's doing well. After a slight scare in mid-June, the doctors advised Stacie not to return to work (RN at Children's Memorial Hospital - Chicago). Since then she's been taking it easy, staying cool in the A/C, and getting a lot of rest. Her belly is big (in a good way :) and her feet and legs are sore, but overall she claims to have enjoyed the pregnancy. Now this strikes me as odd considering she vomited her way through the first half of the pregnancy, and lately she has been waking up in the middle of the night in shrieking pain with calf cramps.
Next Friday, July 30th, we will have a scheduled induction. This will trigger Stacie to go into labor, and we expect there will be nothing unusual about the labor and delivery process with the baby having HLHS. However, once Jonah is born, we will only be able to see/hold him for a short time before they will rush him to the NICU. In the NICU, they start a hormone called prostaglandin that helps regulate the blood flow. However, this medicine also causes respiratory distress, and thus requires the baby to be intubated until surgery. The Norwood procedure will occur sometime between day 3 and 5.
We are heading into next week with a mixture of excitement and fear. I'm sure this is a natural feeling for any expecting parents, but there is a known heart defect that is a matter of life and death. I had not heard of Hypoplastic Left Heart Syndrome (HLHS) prior to our diagnosis, but Stacie had and she knew all too well the seriousness of it when we were given the news. It was gut wrenching...physically and emotionally crippling to learn about what kind of heart our baby was given and what he would have to endure in order to have a chance at life. We will share our "diagnosis story" another time, but in a nutshell, we were given 3 choices.
- Terminate
- Compassionate Care
- A series of 3 operations known as the Norwood, Glenn and Fontan
Our decision was not easy, but in the end we found one of the top surgeons was right in our back yard: enter Dr. Ilbawi. To quote a recent documentary made about him:
"Michel Ilbawi, M.D., leads the pediatric heart surgical team at The Heart Institute for Children. Headquartered at Hope Children's Hospital in Oak Lawn, Illinois, they perform over 400 operations and care for more than 3,500 children with heart defects each year. With over 25 years experience as a pediatric heart surgeon and more than 20,000 surgeries performed, Dr. Ilbawi is nothing short of a miracle-worker to the families whose children he treats daily."
To learn more and see the trailer, go to http://www.heartsofhopethemovie.com/Home.html (we saw a special screening at Hope and have a copy if anyone wants to borrow it)
When we went to first consult with Dr. Ilbawi, we hadn't made our decision. Within the first minutes of meeting him, he told Stacie he would take care of her and be her "brother" throughout the process. We knew he was skilled, but it was his calming demeanor and obvious compassion and devotion for these kids and families that resonated with us. After the consultation, we knew we had to give the man a chance to save our son's life.
What do we know about the 3 surgeries?
- The 3-stage procedure is palliative (not a cure).
- The child's circulation is made to work with only two of the heart's four chambers. In other words, the left half of the heart is bypassed all together.
- The Norwood is performed within 3-5 days after birth.
- The Glenn is performed at 3-6 months of age.
- The Fontan is performed at 2-3 years of age.
- The 3-stage procedure was developed in the early 1980's.
- The earliest survivors are in their 20's, hence the long-term prognosis is unknown.
- Advances in surgical and medical techniques are increasing the survival rates dramatically.
- These operations are complex and will be adapted for each child.
Medically, the goals of the surgeries are:
- To create a new aorta that can carry enough blood out of the body and to connect this aorta to the right ventricle.
- To separate oxygen-rich blood from oxygen-poor blood by:
- Directing oxygen-poor blood, which comes from the organs and tissues of your child's body, to blood vessels that go to their lungs, without going into their heart first. The blood then pics up oxygen in the lungs.
- Allowing oxygen-rich blood, which comes from your child's lungs, to flow into their right ventricle. From there, it can be pumped to the rest of their body.
Ok, I think that is a good Post #1 and a good kick-off for this blog. Hopefully you find it helpful. We will do our best to keep everyone updated via this site and we welcome any comments. We recognize this blog does not start at Day 1 of our journey, so we will make an effort to share the diagnosis story and others that have led us to where we are at now. We know how much it helped to read other stories starting at the point of diagnosis.
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