Tuesday, December 18, 2012
Avoidance and the future
I have been avoiding the post that I need to create in order to bring our blog up to date. Please know, I am getting there. I have many more things to add and will continue with updates soon so that we can share what we have done in honor of our sweet Alyssa.
Tuesday, October 9, 2012
Not a good day
Things have kind of been a blur for us tonight (10/8). All the medical terms have been overwhelming. I'll try to give an update on Alyssa the best I can. After starting Alyssa's open heart surgery, they went in expecting to do the Norwood procedure, which is the first step to rerouting the pathways of the heart to work for her body. Once they got in there, they were able to find the aortic arch (which they hadn't been able to find during our echos). However her aortic arch was not only undersized (as expected) but it was also on the wrong side. So her already rare heart defect became and even more rare one. Her diagnosis changed to Hypoplastic Left Heart Syndrome with right aortic arch with an aberrant left sub-clavian artery. Right aortic arch is estimated to be present in about 0.1% of the normal population. Because this is such a rare condition they decided to close her chest up so they could research the best possible way to repair her heart since the Norwood is not an option until they figure out what to do with her arch. She was then sent to cath lab so they could put dye in her veins and figure out where each one is going to and from the heart. They wanted to have all the information possible re: her unique anatomy before devising a plan of the best course of action. This is where things went downhill. For some reason her body started crashing after the cath procedure was complete. It appeared that she was bleeding internally as her abdomen didn't appear right and her BP started dropping quickly. They then opened her belly up to look for bleeding but didn't find much. They did find lots of fluid and her intestines and liver appeared swollen and grayish due to her body trying to get all her blood to her heart and brain and not enough to her tummy area when she was crashing. They had to start chest compressions on our baby girl and had to do CPR for quite sometime while they got her hooked up to ECMO. Because she is sedated, intubated, and on ECMO life support, we will not know for awhile whether there are any brain injury from lack of oxygen. The doctors are still unsure what caused her body to vasodilate; right now the only thing they can think of is that she may have had an allergic reaction to the dye that was given.
So right now our baby lays on an operating table in a procedure room while a team of doctors and nurses work continuously on her body to adjust every little thing and get it more stabilized. There will be two nurses, an intensivist, and a technician for the ECMO machine in there at all times throughout the night. She will be receiving round the clock care. At this point our little Alyssa needs a miracle. She also now has mottling of her legs; a sign of just how sick our little baby is. The plan is still up in the air as for what will happen next. We are just trying to give her body time to rest for 24 hours and go from there.
Tomorrow is Chris and my 8 year anniversary and tonight when I go to bed, I will be praying for the best possible gift. For our little girl to receive some kind of miracle.
So right now our baby lays on an operating table in a procedure room while a team of doctors and nurses work continuously on her body to adjust every little thing and get it more stabilized. There will be two nurses, an intensivist, and a technician for the ECMO machine in there at all times throughout the night. She will be receiving round the clock care. At this point our little Alyssa needs a miracle. She also now has mottling of her legs; a sign of just how sick our little baby is. The plan is still up in the air as for what will happen next. We are just trying to give her body time to rest for 24 hours and go from there.
Tomorrow is Chris and my 8 year anniversary and tonight when I go to bed, I will be praying for the best possible gift. For our little girl to receive some kind of miracle.
Monday, October 8, 2012
Surgery Day
Today is surgery day. The day we have been waiting for and dreading all in the same moment. Nothing can compare to feelings we are having today. There is no way to imagine or describe the feeling of handing your child over to someone else and trusting them to bring her back to you after they have performed open heart surgery on her. I just feel all around nauseous right now; it's going to be a long day. Our surgeon told us to plan for the entire day; that is how long it could take from start to finish when you include all the prep and recovery in there. Alyssa is his only surgery for today.
We handed Alyssa over at 7:45am this morning. The plan is to get hourly updates.
First update just came in as I was typing this post. Anesthesia went well. They had her draped at 8:45am and are ready to begin surgery. Pray for her.
We handed Alyssa over at 7:45am this morning. The plan is to get hourly updates.
First update just came in as I was typing this post. Anesthesia went well. They had her draped at 8:45am and are ready to begin surgery. Pray for her.
Day 4
Alyssa's 4th day of life:
A day full of joy and fear. Joy b/c big sister and big brother got to come visit and hold baby Alyssa and spend some time with mommy and daddy. Fear of course b/c of the hard facts of what Alyssa is up against and also the unknown of what is to come.
Alyssa's day started off with an x-ray, which later proved that she has some fluid around her lungs. She started Lasix today to help get some of the fluid off. The cardiologist thought that if we could get some fluid off, that it would help with her apnea spells.
It seems like everytime we stepped out of the room yesterday, one of the doctors came to make rounds. I did get to see one of the neonatologists yesterday, but we missed the cardiologist and the cardiothoracic surgeon.
Late morning my mom brought in our older two kiddos to see their baby sister. Addison was beaming to be able to hold Alyssa. Connor was excited to see her as well, but couldn't sit still for long so we had to hurry with pictures. But we got some of the kids together and my mom also took pictures of the whole family of 5 together. It has been a struggle for our oldest, Addison, to adjust to time away from mom and dad. Especially from mom. Lots of tears flowed yesterday as she got ready to leave the hospital and it about tore my heart out when she looked at my mom and said "Grandma, can I please just have a few more minutes with mommy". I know we will get through this, but it's moments like those that remind me of how bad I wish to be able to be there for all my kids; but knowing that I can't.....not physically anyway.
They also tried to put a PICC line in Alyssa again yesterday, but were unsuccessful. It was finally decided that they would just wait til surgery and put something in when she was under sedation. Feel so bad that she had to be poked two days in a row with no results. The cardiologist also requested labs be drawn on her to rule out infection since she's had a fever. They wanted to make sure it was caused just by the prostaglandins she is receiving for her heart. And the good news was that the results came back that she has no infection.
Alyssa's 4th day was finished off by lots of snuggling with mom before we went to bed.
A day full of joy and fear. Joy b/c big sister and big brother got to come visit and hold baby Alyssa and spend some time with mommy and daddy. Fear of course b/c of the hard facts of what Alyssa is up against and also the unknown of what is to come.
Alyssa's day started off with an x-ray, which later proved that she has some fluid around her lungs. She started Lasix today to help get some of the fluid off. The cardiologist thought that if we could get some fluid off, that it would help with her apnea spells.
It seems like everytime we stepped out of the room yesterday, one of the doctors came to make rounds. I did get to see one of the neonatologists yesterday, but we missed the cardiologist and the cardiothoracic surgeon.
Late morning my mom brought in our older two kiddos to see their baby sister. Addison was beaming to be able to hold Alyssa. Connor was excited to see her as well, but couldn't sit still for long so we had to hurry with pictures. But we got some of the kids together and my mom also took pictures of the whole family of 5 together. It has been a struggle for our oldest, Addison, to adjust to time away from mom and dad. Especially from mom. Lots of tears flowed yesterday as she got ready to leave the hospital and it about tore my heart out when she looked at my mom and said "Grandma, can I please just have a few more minutes with mommy". I know we will get through this, but it's moments like those that remind me of how bad I wish to be able to be there for all my kids; but knowing that I can't.....not physically anyway.
They also tried to put a PICC line in Alyssa again yesterday, but were unsuccessful. It was finally decided that they would just wait til surgery and put something in when she was under sedation. Feel so bad that she had to be poked two days in a row with no results. The cardiologist also requested labs be drawn on her to rule out infection since she's had a fever. They wanted to make sure it was caused just by the prostaglandins she is receiving for her heart. And the good news was that the results came back that she has no infection.
Alyssa's 4th day was finished off by lots of snuggling with mom before we went to bed.
Sunday, October 7, 2012
Day 3
Day 3 was pretty uneventful compared to the first two days of life. She was still having oxygen desats like she has been having all along. The one thing they did attempt on Day 3 was a PICC line. Unfortunately they were unsuccessful and decided the would try again the next day. I discharged from the mom and baby floor this day. It's such a bittersweet feeling getting to discharge from the hospital and seeing other moms do the same; the only difference is they are able to take their babies home. After myself being discharged, we took some stuff to NICU and everything else we took to the Jeep. Chris then took some stuff home and went and spent some time with our big kids. They LOVED that daddy was home for awhile. After he got back to the hospital, I decided to take that chance to run to Target really quick to get a few things. When I returned at 10pm, Chris and Alyssa were both snoozing away. Of course I expected Alyssa's to be sleeping, but not Chris. He was wiped out.
Chris and I both slept in Alyssa's room on Day 3. Although I don't think I did much sleeping as it is really hard to sleep with alarms going off all night alerting you that something isn't quite right with you little one. I managed though. She did have an apnea spell once during the night where she quit breathing and the nurse had to lift her up and rub her back good to get her breathing again. Talk about a scary feeling. She also struggled with her fever on Day 3 and had to have cold wash clothes put on her forehead and under her arms. Her room is like a frig in order to help keep her temp down. At one point the nurse thought she would have to bring in a box fan to cool her down. Luckily a fan was not needed.
Chris and I both slept in Alyssa's room on Day 3. Although I don't think I did much sleeping as it is really hard to sleep with alarms going off all night alerting you that something isn't quite right with you little one. I managed though. She did have an apnea spell once during the night where she quit breathing and the nurse had to lift her up and rub her back good to get her breathing again. Talk about a scary feeling. She also struggled with her fever on Day 3 and had to have cold wash clothes put on her forehead and under her arms. Her room is like a frig in order to help keep her temp down. At one point the nurse thought she would have to bring in a box fan to cool her down. Luckily a fan was not needed.
Day 2
Day 2:
What an incredibly busy day it was. There is so much going on that things are already starting to become a blur, so I definitely need to get them jotted down. Daddy stayed with Alyssa all night in her room and it was a fairly uneventful night. He came down to get me the morning of Day 2 and the neonatologist and cardiologist had both already been in to check on Alyssa. The neonatologist decided to cancel Alyssa's MRI because she decided the weakness by her mouth was very minimal. Our cardiologist was not happy about this and called in the neurologist to consult on it. Our cardiologist felt that the slight weakness was enough to outweigh any risks b/c then they could rule out any facial nerve palsy or other brain injury prior to her first open heart surgery. He felt that with the research CHOP has been doing regarding the correlation between children with CHD's and brain injuries, an MRI would be beneficial in our situation to set a baseline of knowing whether or not Alyssa had a brain injury before or after surgery. Here is a link to the research that CHOP has been doing. http://www.chop.edu/service/cardiac-center/cardiac-center-research/brain-injury-newborns-chd.html
After the neurologist came up and spoke with us and did an examination on Alyssa, he decided that he agreed with the cardiologist in this case. He commented that if it were a heart healthy child coming into the office to see him regarding the slight asymmetry of the mouth, we would not recommend an MRI but would rather suggest just waiting and watching it b/c even if there was a brain injury it would be minor. But in Alyssa's case, since she is going in for a very complex heart surgery in a couple days he thought it best to rule out any brain injury that may cause problems during the surgery. So the MRI was back on, we just had to wait on word of whether or not they could get her back on the schedule since they had already filled her 11am time slot.
Alyssa was able to have her MRI done a little after 1:30pm. It was quite the feat getting all the medications, tubing and equipment down there and switched over so that she could get her MRI done. Luckily she didn't require any sedation for the MRI b/c after they swaddled her all up, she fell right asleep and didn't move a muscle. The best news of all came later that evening when the neurologist stopped back in to check on Alyssa and let us know that the MRI came back normal and Alyssa had no facial nerve palsy or other brain injury. It appears to just be a weak muscle in her face causing the slight asymmetry in her mouth.
We were able to hold Alyssa more on Day 2 which was wonderful. Nothing better than cuddling your newborn baby. Her Aunt Jessica also got to hold her. But with the busy day came some stress. Alyssa had a few apnea spells and several desats in her oxygen levels. Later in the evening our nicu nurse informed the neonatologist of all the desats she was having and the neonatologist decided to put Alyssa on a nose cannula with some oxygen to see if that would help with the desats in oxygen. It seemed to help some, but she did have a couple spells throughout the night.
We also got to meet with Alyssa's cardiothoracic surgeon and his nurse today. He went over the upcoming surgery with us and all the complications that can go along with it. He also discussed with us the improvements that have been made since he started doing the Norwood. We were happy to hear that 15 or so years ago when he and his team started doing the Norwood their survival rate was around 25% and now their teams survival rate on the Norwoods they perform is in the 90-95% range. That was reassuring to hear even though he made it clear that complications can arise and that although they try their best to save every baby, sometimes that doesn't happen. So on Monday, October 8th, our little girl will go in to have the most complex heart surgery you can have. We have lots of faith in our surgeon and know that Alyssa will continue to show her spunk and be a little fighter. At 7am that Monday our cardiothoracic surgeon will do a consult with a group of other doctors regarding Alyssa's case and surgery prep is set to begin at 7:30am.
All in all, we met with a social worker, neonatologist, cardiologist, neurologist and our cardiothoracic surgeon on Day 2. It's no wonder Alyssa's oxygen levels were desatting so bad, we had an eventful day.
What an incredibly busy day it was. There is so much going on that things are already starting to become a blur, so I definitely need to get them jotted down. Daddy stayed with Alyssa all night in her room and it was a fairly uneventful night. He came down to get me the morning of Day 2 and the neonatologist and cardiologist had both already been in to check on Alyssa. The neonatologist decided to cancel Alyssa's MRI because she decided the weakness by her mouth was very minimal. Our cardiologist was not happy about this and called in the neurologist to consult on it. Our cardiologist felt that the slight weakness was enough to outweigh any risks b/c then they could rule out any facial nerve palsy or other brain injury prior to her first open heart surgery. He felt that with the research CHOP has been doing regarding the correlation between children with CHD's and brain injuries, an MRI would be beneficial in our situation to set a baseline of knowing whether or not Alyssa had a brain injury before or after surgery. Here is a link to the research that CHOP has been doing. http://www.chop.edu/service/cardiac-center/cardiac-center-research/brain-injury-newborns-chd.html
After the neurologist came up and spoke with us and did an examination on Alyssa, he decided that he agreed with the cardiologist in this case. He commented that if it were a heart healthy child coming into the office to see him regarding the slight asymmetry of the mouth, we would not recommend an MRI but would rather suggest just waiting and watching it b/c even if there was a brain injury it would be minor. But in Alyssa's case, since she is going in for a very complex heart surgery in a couple days he thought it best to rule out any brain injury that may cause problems during the surgery. So the MRI was back on, we just had to wait on word of whether or not they could get her back on the schedule since they had already filled her 11am time slot.
Alyssa was able to have her MRI done a little after 1:30pm. It was quite the feat getting all the medications, tubing and equipment down there and switched over so that she could get her MRI done. Luckily she didn't require any sedation for the MRI b/c after they swaddled her all up, she fell right asleep and didn't move a muscle. The best news of all came later that evening when the neurologist stopped back in to check on Alyssa and let us know that the MRI came back normal and Alyssa had no facial nerve palsy or other brain injury. It appears to just be a weak muscle in her face causing the slight asymmetry in her mouth.
We were able to hold Alyssa more on Day 2 which was wonderful. Nothing better than cuddling your newborn baby. Her Aunt Jessica also got to hold her. But with the busy day came some stress. Alyssa had a few apnea spells and several desats in her oxygen levels. Later in the evening our nicu nurse informed the neonatologist of all the desats she was having and the neonatologist decided to put Alyssa on a nose cannula with some oxygen to see if that would help with the desats in oxygen. It seemed to help some, but she did have a couple spells throughout the night.
We also got to meet with Alyssa's cardiothoracic surgeon and his nurse today. He went over the upcoming surgery with us and all the complications that can go along with it. He also discussed with us the improvements that have been made since he started doing the Norwood. We were happy to hear that 15 or so years ago when he and his team started doing the Norwood their survival rate was around 25% and now their teams survival rate on the Norwoods they perform is in the 90-95% range. That was reassuring to hear even though he made it clear that complications can arise and that although they try their best to save every baby, sometimes that doesn't happen. So on Monday, October 8th, our little girl will go in to have the most complex heart surgery you can have. We have lots of faith in our surgeon and know that Alyssa will continue to show her spunk and be a little fighter. At 7am that Monday our cardiothoracic surgeon will do a consult with a group of other doctors regarding Alyssa's case and surgery prep is set to begin at 7:30am.
All in all, we met with a social worker, neonatologist, cardiologist, neurologist and our cardiothoracic surgeon on Day 2. It's no wonder Alyssa's oxygen levels were desatting so bad, we had an eventful day.
Saturday, October 6, 2012
Happy Birth Day!
Sorry for the delay everyone....... Here is an update about how Alyssa's first day of life went:
Our sweet Alyssa Lorraine arrived on October 4th at 1:40pm. She was 6 lbs 13 oz and 19 inches long. We came to the hospital for our planned induction at 6:45 am. By 8:30 am my water had been broke and pitocin was started. At the very last minute the NICU requested that I deliver in the OR where they had all the equipment necessary to revive our little girl if they needed to. Luckily they didn't need any special equipment at delivery and she was here within 5 minutes of the first push. Despite having the cord wrapped around her neck pretty tight, she still came out with better color than anyone expected and within a couple minutes of stimulation she started to cry. Best noise I have ever heard. Our baby girl had arrived and was ready to fight. Best of all, she was stable enough after delivery that both Chris and I got to hold her for a few minutes and take a couple pictures before they whisked her away to NICU. Chris was able to be with her pretty much the entire day while I recovered and met with visitors. She was really alert most of the day, but did have a few apnea spells which are a side effect of the prostaglandins (medicine) she is receiving to keep her PDA valve open until surgery. The medicine makes her really sleepy and then she forgets to breathe, but after some quick stimulation she bounces right back. The neonatologist also noticed a slight weakness on the right side of Alyssa's mouth and ordered a MRI to rule out facial nerve palsy. We are hoping it is just a weak muscle that will get better with time. It is hardly noticeable, but I'm glad the neonatologist caught it. Chris spent the night in the NICU with Alyssa while I went back to my room to get some rest. Because the prostaglandins also make her have an elevated temperature, they have to keep the room cool and Chris said that he about froze. Best of all, our little peanut has been holding strong on just room air.
Will post more updates hopefully tomorrow about how day 2 went.......to tired to do it right now.....I should have been asleep hours ago.
Our sweet Alyssa Lorraine arrived on October 4th at 1:40pm. She was 6 lbs 13 oz and 19 inches long. We came to the hospital for our planned induction at 6:45 am. By 8:30 am my water had been broke and pitocin was started. At the very last minute the NICU requested that I deliver in the OR where they had all the equipment necessary to revive our little girl if they needed to. Luckily they didn't need any special equipment at delivery and she was here within 5 minutes of the first push. Despite having the cord wrapped around her neck pretty tight, she still came out with better color than anyone expected and within a couple minutes of stimulation she started to cry. Best noise I have ever heard. Our baby girl had arrived and was ready to fight. Best of all, she was stable enough after delivery that both Chris and I got to hold her for a few minutes and take a couple pictures before they whisked her away to NICU. Chris was able to be with her pretty much the entire day while I recovered and met with visitors. She was really alert most of the day, but did have a few apnea spells which are a side effect of the prostaglandins (medicine) she is receiving to keep her PDA valve open until surgery. The medicine makes her really sleepy and then she forgets to breathe, but after some quick stimulation she bounces right back. The neonatologist also noticed a slight weakness on the right side of Alyssa's mouth and ordered a MRI to rule out facial nerve palsy. We are hoping it is just a weak muscle that will get better with time. It is hardly noticeable, but I'm glad the neonatologist caught it. Chris spent the night in the NICU with Alyssa while I went back to my room to get some rest. Because the prostaglandins also make her have an elevated temperature, they have to keep the room cool and Chris said that he about froze. Best of all, our little peanut has been holding strong on just room air.
Will post more updates hopefully tomorrow about how day 2 went.......to tired to do it right now.....I should have been asleep hours ago.
Wednesday, October 3, 2012
Emotions emotions emotions......
There are so many emotions running through my mind today as we spend our final day at home before our little peanut arrives. Tomorrow is the big day. I am scheduled to go in at 6:30 am tomorrow to start our induction. The pain I will endure tomorrow to bring our little girl into this world is nothing compared to the pain that she will have to endure just to stay in this world with us. I pray everyday for a miracle and remain positive that the medical field will keep advancing and she will live a long and happy life. Our little peanut may only have half a heart, but she will be a fighter and one strong little girl.
As I try to get last minute things done around the house; oh you know like packing our bags for the hospital.....I get stopped by my emotions and need to take a moment to myself. There is just a lot going through my head. Every emotion imaginable has occurred in the last few weeks, but as we inch closer to meeting our daughter and leaving our older kids for a bit to take care of her, those emotions get stronger. There is so much unknown that we are facing.
A local heart mom that reached out to me after our daughter's diagnosis is currently in the hospital with her daughter right now as her little girl recovers from her second open heart surgery. Our little girl's do not have the same heart defect, but they will both have the same second surgery. I showed Chris a picture of my heart mom friend's little girl from yesterday right after surgery and he made the comment that he wasn't ready for that yet. I don't think a parent is ever ready for something like that. We are of course overjoyed at the thought of getting to meet our little girl tomorrow; but we are also scared out of our minds. Seeing our 6 y/o with her severely broken arm last weekend and spending the evening with her in the ER shook us to the core. Life can be hard, but we are ready to fight the fight and put our best foot forward everyday.
There will always be the emotions.....how can there not be.
Joy that we are completing our family and that we were blessed with a baby girl, special heart and all.
Anger that our daughter has to go through so much just to stay with us and will have a lifetime of required medical care.
Guilt that our older kids have to be so confused during this time and shuffled around. Guilt that Addison is taking on so much, and now with breaking her arm she has even more challenges.
Sadness that I can't be there for all my kids. Anyone that knows me knows that I HATE to be away from my kids. Even when they are driving me crazy, I still want to be the one tucking them in at night.
Fear of what is up ahead and for each known event, there are the unknowns that lurk behind them.
Hopeful that with each day the medical field will improve and hopeful that there will be more awareness for CHD's so that our little peanut can continue to receive the best medical care possible for such a complex heart defect and she will go on to live a long and fulfilling life.
Happiness of course. Happiness that even though we don't know the reason behind everything that happens in our life, we have been blessed with great family and friends to support us along the way. Happy that tomorrow our little girl will be here and we can start a new chapter in our journey of mending her heart. It will never be whole and it will never be "fixed", but it will be full of life and love.
Thankful that she has so many people on her side fighting for her and that she has a big sister and brother that are so excited to meet her.
Tomorrow will be hard, and we know there will be even harder days ahead of that. But we will remain positive, enjoy every ounce of progress and keep looking forward to the day that we get to bring our baby girl home to be a family all under one roof.
As I try to get last minute things done around the house; oh you know like packing our bags for the hospital.....I get stopped by my emotions and need to take a moment to myself. There is just a lot going through my head. Every emotion imaginable has occurred in the last few weeks, but as we inch closer to meeting our daughter and leaving our older kids for a bit to take care of her, those emotions get stronger. There is so much unknown that we are facing.
A local heart mom that reached out to me after our daughter's diagnosis is currently in the hospital with her daughter right now as her little girl recovers from her second open heart surgery. Our little girl's do not have the same heart defect, but they will both have the same second surgery. I showed Chris a picture of my heart mom friend's little girl from yesterday right after surgery and he made the comment that he wasn't ready for that yet. I don't think a parent is ever ready for something like that. We are of course overjoyed at the thought of getting to meet our little girl tomorrow; but we are also scared out of our minds. Seeing our 6 y/o with her severely broken arm last weekend and spending the evening with her in the ER shook us to the core. Life can be hard, but we are ready to fight the fight and put our best foot forward everyday.
There will always be the emotions.....how can there not be.
Joy that we are completing our family and that we were blessed with a baby girl, special heart and all.
Anger that our daughter has to go through so much just to stay with us and will have a lifetime of required medical care.
Guilt that our older kids have to be so confused during this time and shuffled around. Guilt that Addison is taking on so much, and now with breaking her arm she has even more challenges.
Sadness that I can't be there for all my kids. Anyone that knows me knows that I HATE to be away from my kids. Even when they are driving me crazy, I still want to be the one tucking them in at night.
Fear of what is up ahead and for each known event, there are the unknowns that lurk behind them.
Hopeful that with each day the medical field will improve and hopeful that there will be more awareness for CHD's so that our little peanut can continue to receive the best medical care possible for such a complex heart defect and she will go on to live a long and fulfilling life.
Happiness of course. Happiness that even though we don't know the reason behind everything that happens in our life, we have been blessed with great family and friends to support us along the way. Happy that tomorrow our little girl will be here and we can start a new chapter in our journey of mending her heart. It will never be whole and it will never be "fixed", but it will be full of life and love.
Thankful that she has so many people on her side fighting for her and that she has a big sister and brother that are so excited to meet her.
Tomorrow will be hard, and we know there will be even harder days ahead of that. But we will remain positive, enjoy every ounce of progress and keep looking forward to the day that we get to bring our baby girl home to be a family all under one roof.
Tuesday, October 2, 2012
Busy busy weekend
Last weekend was filled with lots of time spent on getting last minute things done around here before delivery day. Saturday was spent running errands pretty much all day....no fun. On Sunday we had a family day. We took the kids to the pumpkin patch and had a great day playing with my brother and his 3 kids. Unfortunately, even though we only live about an hour away from each other, they don't get to see each other near enough. The kids took it all in and enjoyed every minute of the fun. There was a little of everything to do: climbing on hay bales & tractor tires, pedal tractors, jungle gyms and tire swings, bounce houses and a zip line. And of course the hayride out to the pumpkin patch. My brother and Chris found a pumpkin that looked like it was pregnant, so of course they had me take a picture with it. I'm sure it will eventually end up on Facebook when I least expect it.
After a fun filled day at the pumpkin patch, we headed home as we had invited an old daycare family over for pizza so that they could play together before our little peanut arrives. After eating supper, the kids went outside to play. That is about where to fun stopped for the weekend. Our 6 y/o and her friend were playing on the swing set.....well they decided to start doing flips on the swings. Unfortunately I didn't see them doing flips or I would have stopped them as it always makes me nervous. Addison's friend was showing her a new trick and when Addison went to try it she apparently didn't land right. All her weight went to her forearms and it snapped her left forearm bones in half. She walked very calmly up to the back deck where I was standing and said "I think I need to go to the hospital". Then I saw her arm.....insert panic mode here. As my old daycare kid's mom sat with Addison and kept her calm, I was panicking trying to remember my mother in laws phone number to tell her to come to our house fast.....they only live 5 doors down and she is a nurse. In the meantime, Chris runs barefoot out of the house and down to his mom's house to get her. We left our son with Chris's mom and took off rather quickly to the ER. There is nothing worse than seeing your child in pain and so scared. I found out later that while I was panicking, Addison was worried that she was going to die. My poor little girl. We got right into the ER with no wait. I'm assuming the look of her arm had something to do with it. When we walked in I saw one of the ER nurses mouth to another nurse "wow, that is really bad". Not what I needed to see at that time. Her arm looked like it had a big V right in the middle of the forearm. Thankfully it didn't break the skin, so there was no blood. After a couple tries at an IV, some morphine, x-rays and lots of cartoons; we finally met the orthopedic surgeon around 10:45pm. He was stuck in surgery before that and Addison had just ate a couple hours before coming to the ER, so she couldn't have anesthesia until at least 10:30pm. Luckily b/c she is so young and how the bones broke, she didn't have to have surgery. The surgeon was able to reset the bones within a minute or so of Addison being put under and us leaving the room. We were out of the room at 11:02pm and back in with her awake and casted at 11:15pm. I was so nice to see her no longer in pain and scared; and of course to see her forearm straight again.
We now have a whole new set of challenges to get figured out before our induction date, which is just around the corner. We are just happy that our little girl is back to her old self, for the most part. Hate that she has to go through this on top of everything that she has already been faced with regarding her sister's heart condition, but kids are resilient and I know we will get through this.
After a fun filled day at the pumpkin patch, we headed home as we had invited an old daycare family over for pizza so that they could play together before our little peanut arrives. After eating supper, the kids went outside to play. That is about where to fun stopped for the weekend. Our 6 y/o and her friend were playing on the swing set.....well they decided to start doing flips on the swings. Unfortunately I didn't see them doing flips or I would have stopped them as it always makes me nervous. Addison's friend was showing her a new trick and when Addison went to try it she apparently didn't land right. All her weight went to her forearms and it snapped her left forearm bones in half. She walked very calmly up to the back deck where I was standing and said "I think I need to go to the hospital". Then I saw her arm.....insert panic mode here. As my old daycare kid's mom sat with Addison and kept her calm, I was panicking trying to remember my mother in laws phone number to tell her to come to our house fast.....they only live 5 doors down and she is a nurse. In the meantime, Chris runs barefoot out of the house and down to his mom's house to get her. We left our son with Chris's mom and took off rather quickly to the ER. There is nothing worse than seeing your child in pain and so scared. I found out later that while I was panicking, Addison was worried that she was going to die. My poor little girl. We got right into the ER with no wait. I'm assuming the look of her arm had something to do with it. When we walked in I saw one of the ER nurses mouth to another nurse "wow, that is really bad". Not what I needed to see at that time. Her arm looked like it had a big V right in the middle of the forearm. Thankfully it didn't break the skin, so there was no blood. After a couple tries at an IV, some morphine, x-rays and lots of cartoons; we finally met the orthopedic surgeon around 10:45pm. He was stuck in surgery before that and Addison had just ate a couple hours before coming to the ER, so she couldn't have anesthesia until at least 10:30pm. Luckily b/c she is so young and how the bones broke, she didn't have to have surgery. The surgeon was able to reset the bones within a minute or so of Addison being put under and us leaving the room. We were out of the room at 11:02pm and back in with her awake and casted at 11:15pm. I was so nice to see her no longer in pain and scared; and of course to see her forearm straight again.
We now have a whole new set of challenges to get figured out before our induction date, which is just around the corner. We are just happy that our little girl is back to her old self, for the most part. Hate that she has to go through this on top of everything that she has already been faced with regarding her sister's heart condition, but kids are resilient and I know we will get through this.
My last OB visit
Monday, September 24th, was my last OB visit. We had an ultrasound / bio physical profile done that day as well. I'm still measuring with excess amniotic fluid. I believe she said it was 25 cm. Which is just above the highest end of the normal range. They still aren't concerned about the excess fluid though b/c they have examined our daughter and all her organs and do not see anything wrong with her anatomy that would be cause for concern. Other than her heart of course, but we already know about that. So we are hoping it is nothing and baby girl will come out strong and ready to fight her battle with nothing else holding her back. Our little peanut is still measuring a little small at 6 lbs 6 oz. But she grew since our last u/s so that made me feel better. Hope she continues to grow and get big and strong for surgery.
I'd say my contractions were back to normal at this point. Having them here and there, some days more than others. I do still get them frequently when I'm standing a lot or doing a lot of moving around and bending. Still supposed to be taking it easy, but that is easier said than done. I have tried to just do little things at a time, and still leave lots of time for resting in between.
Our induction is still a go for Oct 4th.
I'd say my contractions were back to normal at this point. Having them here and there, some days more than others. I do still get them frequently when I'm standing a lot or doing a lot of moving around and bending. Still supposed to be taking it easy, but that is easier said than done. I have tried to just do little things at a time, and still leave lots of time for resting in between.
Our induction is still a go for Oct 4th.
Wednesday, September 26, 2012
Hospital Tour
So I'm a little behind on updating my post, guess it's time to play catch up. Last Wednesday, we met with the PICU Child Life Specialist and took our tour of the hospital. It was a little bit of an overwhelming experience, but we knew that it needed to be done in order to help prepare us for what is to come. After delivery our daughter will be sent to NICU. We very briefly got to see a NICU room, and I have to say that I'm not fond of the NICU. Not the NICU itself, but the incubators that are in them. I have to admit it made me nauseous being in the NICU room b/c the incubator to me resembles a coffin. I'm really not looking forward to seeing out little girl in one of those. It will be hard, but we will get through it. The NICU rules are very strict compared to the PICU. We are unsure if our older two kiddos will get to see their baby sister in the NICU or not. When it is RSV and flu season, no kids under the age of 11 are allowed in the NICU. You can take very few items into the NICU and there are only 2 people allowed at a time in the room. It will be difficult for me to be away from my little girl the first night. Since I'll be in recovery on a different floor in the hospital, Chris will be staying with our little girl in the NICU. Hoping my recovery goes smoothly so that I can discharge a day early and be with my little girl. I suppose Chris and I will then take turns sleeping in her room. And the other will sleep in one of the Ronald McDonald rooms. I don't want our little girl to be left alone during this critical time. She will need us more than ever. She will stay in NICU until her first surgery, which is tentatively scheduled for October 8th.
After her surgery, she will be transferred to the PICU. That is where all the cardiac nurses are, so that is where our little peanut will be from then on. Unfortunately, the PICU is the only unit involving kids that is still in the remodeling process. We got to see the finished Peds side, which was beautiful. Huge private rooms, large windows, bright colors, interactive things for kids. The PICU room will look the same as the Peds rooms, only with more medical equipment of course. The new PICU is set to open in November. Until then, we will be on the old PICU floor which is pretty gloomy compared to the new unit. Tiny room with only room for one parent to sleep in there if they wish, but they recommend sleeping in the Ronald McDonald rooms instead since the current PICU rooms are so tiny. I however would rather sleep on an uncomfortable pull out chair in a tiny room than be away from my little girl. I know I will need breaks, but I will get those breaks when someone else can be there with our little girl when Chris or I need a breather. Don't know how long we'll be in the hospital before our little girl is well enough to come home. Could be as early as 2-3 weeks after surgery, but more than likely it will be 2-3 months after surgery. If that is the case, then our little peanut will be one of the first patients in the newly remodeled PICU. As we hope for the best and long to be able to take our baby home sooner rather than later, we also must prepare ourselves for the possibility that she may not be able to come home between her first two surgeries. As the saying goes "hope for the best, but prepare for the worst".
As much as our little girl moves around in my belly, I just know that she is going to come out strong and be a fighter.
After her surgery, she will be transferred to the PICU. That is where all the cardiac nurses are, so that is where our little peanut will be from then on. Unfortunately, the PICU is the only unit involving kids that is still in the remodeling process. We got to see the finished Peds side, which was beautiful. Huge private rooms, large windows, bright colors, interactive things for kids. The PICU room will look the same as the Peds rooms, only with more medical equipment of course. The new PICU is set to open in November. Until then, we will be on the old PICU floor which is pretty gloomy compared to the new unit. Tiny room with only room for one parent to sleep in there if they wish, but they recommend sleeping in the Ronald McDonald rooms instead since the current PICU rooms are so tiny. I however would rather sleep on an uncomfortable pull out chair in a tiny room than be away from my little girl. I know I will need breaks, but I will get those breaks when someone else can be there with our little girl when Chris or I need a breather. Don't know how long we'll be in the hospital before our little girl is well enough to come home. Could be as early as 2-3 weeks after surgery, but more than likely it will be 2-3 months after surgery. If that is the case, then our little peanut will be one of the first patients in the newly remodeled PICU. As we hope for the best and long to be able to take our baby home sooner rather than later, we also must prepare ourselves for the possibility that she may not be able to come home between her first two surgeries. As the saying goes "hope for the best, but prepare for the worst".
As much as our little girl moves around in my belly, I just know that she is going to come out strong and be a fighter.
Monday, September 17, 2012
No Change..... at least I hope not
I had an appt today for my 37 week check up (almost 37 weeks, will be on Wednesday) and also a non-stress test. Non-stress test went well and they finally got little peanut's heart to do what they needed it to do so they could unhook me.
My cervix hadn't changed any since when they checked me in the hospital. So that is good news. Still on my modified bed rest and just have to take it easy and drink lots of water. Hoping and praying that our little peanut and my body agree that she needs to stay in there a little longer to get bigger and stronger.
......as I'm writing this blog and laying on my side on the couch I'm noticing that I'm having more contractions than normal. I've only had a few all day, but just in the last hour on the couch I've had more than all day. Really hoping they stop on their own. Prayers that they stop and our baby gets more time to grow.
My cervix hadn't changed any since when they checked me in the hospital. So that is good news. Still on my modified bed rest and just have to take it easy and drink lots of water. Hoping and praying that our little peanut and my body agree that she needs to stay in there a little longer to get bigger and stronger.
......as I'm writing this blog and laying on my side on the couch I'm noticing that I'm having more contractions than normal. I've only had a few all day, but just in the last hour on the couch I've had more than all day. Really hoping they stop on their own. Prayers that they stop and our baby gets more time to grow.
Sunday, September 16, 2012
Quite the scare today
So our little girl gave us quite the scare today. We had spent the weekend camping with friends and family for Chris's mom's wedding. We finally went back to our camper just a little after midnight. I had been nauseous since about 9 or 10pm, and when I finally got laid down, I just tossed and turned. I started having contractions at about 1am but they weren't consistently spaced, so I didn't worry to much about it. At around 1:30 or 2am, our daughter woke up sick to her stomach. Tried to frantically get out of bed, not an easy feat for a 36 week pregnant woman. Didn't want to have to clean up vomit in a camper, especially when I already wasn't feeling well. Needless to say, after checking her temp (no temp), I chose to fill the bathtub with blankets and her pillow and let her sleep in the bathtub by our room. Yep, totally put our 6 year old back to sleep in a bathtub. All I was thinking of was not wanting to clean up vomit from carpet and bedding if she did end up getting sick. After that I fell asleep only to be woke up by contractions at 4am. The contractions were 3 minutes apart consistently for 30 minutes, so I called my OB. Didn't want to take any chances with our little heart baby coming early. So had to call my mother in law to come over from her camper to ours to watch our two kiddos while we went to the hospital. I had to drive myself, and my husband gave me directions from the passengers seat. Let's just say that it was his mom's wedding reception and we had been sitting around a campfire, and with just going to bed 3 hours before, he was in no shape to drive. Poor guy! Contractions stayed consistent the entire drive to the hospital. Got checked in around 5:15am and got all hooked up to the monitor. I was really nauseous and the contractions continued. For about an hour or two they started to get pretty intense. I was getting really nervous at that point b/c she is already measuring small so we really don't want her to be early. The Norwood is one of the most complex and difficult heart operations there are and the bigger the baby is the better. Right now our little peanut is probably just over 5 lbs. She needs to stay in until our scheduled induction in 2 1/2 weeks. After being checked by the nurses at the hospital, they thought I was still just at 1 cm, so that was good. By the time my OB got there and I'd had those more intense contractions, I was almost at 2 cm and my cervix had softened. By this time my contractions had become less intense, almost to the point that I couldn't feel them, but they were even closer together. After discussing it with my OB, we decided to try a shot of medicine in my arm to hopefully stop the contractions. If it didn't work, there would be nothing they could really do and we would just have to let nature take it's course at this point. Luckily the medicine seemed to work. It made my heart thump and my body feel jittery, but it didn't effect our little peanut's heart rate and the contractions just became what the nurse called "irritability" By around2:30pm the nurse updated my OB and it was determined that I could go HOME! The contractions weren't intense enough any longer to cause cervix change, so hopefully it stays that way. I was told to drink lots of water and be a couch potato. So essentially, I'm on bed rest. Since being home tonight I've had a few contractions, but nothing consistent. I've been trying to stay off my feet as much as possible b/c when I stand for to long or walk to much, I get nauseous and my stomach starts to feel like it's going to contract again. My husband took this scare very seriously and has stepped up to the plate. Although he does ALOT for our family; housework, supper and bathing kids is not something he's used to. But all evening he has told me that I need to lay down and doesn't want me to do much at all. It's kind of weird sitting back and lounging on the couch while my husband cleans the kitchen, does the dishes, picks up the house and gets the kids ready for bed. At least in my house it is weird. But I have to say, even though I may not be able to find everything that he puts away, at least it is getting done. He has been wonderful through this all. Now all we can do is wait and see if baby girl will try and give us a scare again before her Oct. 4th "planned" arrival. Hoping she stays in as long as possible. Tomorrow I go back to my doctor for my 37 week check up and a non-stress test. My cervix will be checked again at that time. Then on Wednesday we will have our tour of the Labor and Delivery unit at our hospital and the NICU and PICU where are little girl will be staying. Until then, hoping for no more scares from our little girl and this momma is going to be a "couch potato", per doctors orders. Positive thoughts and prayers are always appreciated as we continue on this journey.
Tuesday, September 11, 2012
Amazing friends and support
I know I will never be able to thank them enough or truly let them know just how much they mean to me. I have some amazing friends and family; and a great support system. Even on days like today, when life gets me down, I know that I always have things to be thankful for.
Even though it is hard to ask for help, it is always a great feeling when a friend calls and asks to take you out to lunch or dinner. Or meets up with you just to catch up. I've had friends offer to watch our older kiddos when we are in the hospital with their new baby sister. And of course today, a great friend of mine from childhood set up a fundraiser for me online and linked it to my blog and her Facebook account.
Last night I left the kids with the hubby and went to my first heart family support group. What a warm welcome I received. It's not a group that you "want" to become a part of, but it is so nice to know it is there for families like mine and many others that we unexpectedly placed in the heart world.
It is just over 3 weeks until we meet our baby girl and I know that once that happens things will become quite crazy. So I just wanted to make sure that everyone knows how very grateful we are for their continued prayers and support.
Even though it is hard to ask for help, it is always a great feeling when a friend calls and asks to take you out to lunch or dinner. Or meets up with you just to catch up. I've had friends offer to watch our older kiddos when we are in the hospital with their new baby sister. And of course today, a great friend of mine from childhood set up a fundraiser for me online and linked it to my blog and her Facebook account.
Last night I left the kids with the hubby and went to my first heart family support group. What a warm welcome I received. It's not a group that you "want" to become a part of, but it is so nice to know it is there for families like mine and many others that we unexpectedly placed in the heart world.
It is just over 3 weeks until we meet our baby girl and I know that once that happens things will become quite crazy. So I just wanted to make sure that everyone knows how very grateful we are for their continued prayers and support.
Monday, September 10, 2012
Still holding strong
Just two days shy of being 36 weeks along. Today we had an non-stress test before my regular OB appt. It's also our son's 4th birthday today. He was such a trooper today sitting through my non-stress test. I sat there hooked up to monitors for a good 1/2 hour and he didn't complain once.
All looked well with baby girl. She was moving around like crazy during the non-stress test. I still haven't gained much weight, which is all new to me. With both our other two kiddos, I gained 28-30 lbs, and that was after I gained back any weight lost in the beginning. With this pregnancy, after gaining back the weight I lost in the beginning, I have only gained 5 lbs over my starting weight. That is how much the baby weighs right now. I just don't get it. I guess as long as she continues to grow and stay as healthy as possible, that is all that matters to me.
We go back again next Monday for another non-stress test and my almost 37 week appt. Not much time left til the big day. Have to say, although I'm so excited to meet this little girl who seems to love doing flip flops inside me, I'm so very scared for her.
All positive thoughts and prayers are welcome. She needs each and every one of them that she can get.
All looked well with baby girl. She was moving around like crazy during the non-stress test. I still haven't gained much weight, which is all new to me. With both our other two kiddos, I gained 28-30 lbs, and that was after I gained back any weight lost in the beginning. With this pregnancy, after gaining back the weight I lost in the beginning, I have only gained 5 lbs over my starting weight. That is how much the baby weighs right now. I just don't get it. I guess as long as she continues to grow and stay as healthy as possible, that is all that matters to me.
We go back again next Monday for another non-stress test and my almost 37 week appt. Not much time left til the big day. Have to say, although I'm so excited to meet this little girl who seems to love doing flip flops inside me, I'm so very scared for her.
All positive thoughts and prayers are welcome. She needs each and every one of them that she can get.
Thursday, September 6, 2012
Update on baby girl
I had my 35 week appointment yesterday, as well as an ultrasound to check on baby girl. I can't believe I'm already at 35 weeks!
Her estimated weight was 4 lbs 15 oz, which is a bit small but nothing to be concerned about as of now. I also have a little bit more amniotic fluid than the normal, but again nothing to cause concern as of now. Our little lady was doing her practice breathing and they checked for markers of other abnormalities and defects as well to help ease my mind. Everything looks great and all other organs (besides her heart) appear to be healthy and working as they should. Our next appt. will be on the 10th, our son's 4th birthday! We will do a non-stress test at that time as well.
Her estimated weight was 4 lbs 15 oz, which is a bit small but nothing to be concerned about as of now. I also have a little bit more amniotic fluid than the normal, but again nothing to cause concern as of now. Our little lady was doing her practice breathing and they checked for markers of other abnormalities and defects as well to help ease my mind. Everything looks great and all other organs (besides her heart) appear to be healthy and working as they should. Our next appt. will be on the 10th, our son's 4th birthday! We will do a non-stress test at that time as well.
Some things are hard to swallow....
....but we pick ourselves up by our boot straps and continue on. This post is about what I've learned so far about becoming a mom / family to a baby with Hypoplastic Left Heart Syndrome (HLHS). Some are things that I've experienced already, but most are information from other heart families that I've come to realize will most likely become our reality as well very soon. Now I know every baby is different, but these are some of the things that many families have experienced with their severe CHD (Congenital Heart Defect) child. The list makes me nauseous just thinking about it, but it also brings to light just how serious of an illness our little girl is facing. I am a planner and I know that once our little one is born my planning instinct may have to be thrown out the window. So for now, I will plan and I will create this list no matter how hard it may be. This will remind me when times get tough that although these are hard, they are "common" for heart babies. I will remember that so many other babies and families have went through the same thing and are now able to share their story with new heart families b/c their little ones have already gotten over some of that tough stuff.
So here they are in no particular order:
* First and foremost - there is no fix or cure for HLHS. Our daughter will never have a fully functioning heart. Her treatment of the 3 stage surgeries will make her half a heart do all the work that a whole heart should be doing. Chances are, she will have to have a heart transplant in her late teens or 20's, but nobody knows for sure. Earlier if her heart ends up not being a good candidate for surgery. A transplant is still not a fix or cure. A transplant has their own set of problems; such as a lifetime on anti-rejection drugs and the research that shows that transplanted hearts usually last only 15-20 years.
* She will have to see a cardiologist her entire life and will have many more procedures done to keep her healthy besides her 3 open heart surgeries.
* Normal - throw that term out the window. Our version of normal will soon take on a whole new meaning.
* Your marriage will be tested.
* Your relationships with family and friends will be tested.
* Your world will become a roller coaster ride with lots of ups and downs and twists and turns along the way. All you can do is hold on and be the best advocate you can be for you baby and the rest of your family.
* The Norwood procedure is the most risky of the 3 surgeries our baby girl is required to have in order to survive. She will have to have this surgery within 4-10 days of birth to live. Her NICU stay will most likely be AT LEAST 2-3 weeks if there are no major complications. Sometimes they are unable to leave the NICU between surgery 1 and 2. We hope and pray that we are able to bring our little girl home in between her first two surgeries.
* Interstage (the period between surgery 1 and 2) is a very critical time. We will be home bound during this time and basically quarantined from the "outside" world. Besides doctors appts, our baby girl will not go out of the house. We will also have to limit visitors during this time. Most likely no children (except our own of course) and no one that has been sick or around anyone that has been sick for at least 48 hours. Interstage for us will be during the holidays, so it will be hard. I hope that family and friends understand that we have to be very cautious during this time with our little girl. A simple cold to an average/healthy child could be a hospital stay / ER visit for a child with HLHS. Her immune system will be very compromised during this time and she has to stay healthy in order to have her second surgery. And in order to survive, she has to have the second surgery.....so you understand why limiting exposure to germs and keeping her healthy is very critical. Will I miss spending time with family over the holidays....ABSOLUTELY. But if one or two holiday seasons away from family means the possibility that our daughter will have the chance at a lifetime of holidays, then it is so worth it!
* Hemi-Fontan / Glenn - The second of her series of 3 open heart surgeries. Generally this surgery goes smoother than the Norwood and the recovery time is less. The goal is for baby girl to stay healthy enough so that she can hold out and wait to have this surgery until she is 4-6 months of age.
* Fontan - the final of the 3 stage surgery. This is what finishes up the re-routing per se of her heart. Don't know much about this one other than that every mom and dad wants to be able to say that their baby is "post Fontan". Because that means that our baby's half a heart was strong enough to endure more than most people go through their entire life.
* Try to focus on the small milestones instead of the big picture. So instead of "when are we going home after surgery", instead focus on each step at a time (getting chest closed, off ventilator, feeding, adjusting meds, etc). Each one down gets you that much closer to going home.
* Trust your gut and mommy instinct. Don't be afraid to voice your opinion about your child's care.
* Chris and I will both have to learn how to care for our daughter's medical needs before she can discharge. Anything from meds, feeding tubes, pulse ox monitors to oxygen. Whatever she needs, we both have to know what to do with it.
* You will feel like you need to buy stock in hand sanitizer, soap and lysol wipes b/c you will use so much of it.
* Chris and our daughter will both have to change clothes and wash up when coming home from school and work so they don't bring something into the house unknowingly, mainly a concern during interstage b/c it will be flu and rsv season during that time.
* Most HLHS babies have GI issues and struggle to gain weight.
* Most HLHS babies will have delays and need physical therapy as well as speech, occupational and feeding therapy. Because she will spend so much time in the hospital and on her back after surgeries, she will have a lot of catching up to do. Being intubated during surgeries and after can cause trauma to the vocal cords and also aversions of having anything in their mouth, even a bottle.
* Breastfeeding may be nearly impossible. Most HLHS babies are unable to breastfeed (at least for the first couple months). Lots of babies are on feeding tubes and have to fortify to get higher calorie nutrition since they struggle with gaining weight and of course they want them a certain weight before each surgery. Nursing is more taxing on their hearts than using a bottle and wears them out quickly, burning more calories than the doctors want. I so want to be able to nurse our daughter just like I did our other two kiddos, but I know I must do what is best for our little girl. Chances are I will be pumping around the clock to keep up a good supply of milk. When she is stronger I will try to nurse again, but if I have to pump and feed through bottles or tubes, then that is what I'll do so that she can get her liquid gold.
* You don't get the privilege of just letting your child sleep through the night or sleep whenever they want to. They can't miss a feeding. Calories are so important to these babies that the hospital and eventually the parents count every single mL that they take in. Each mL is so important. So there won't be much sleep for this mom with pumping around the clock and making sure that our little girl also gets all her feeds.
* One of the hardest things for me is that I don't know if I'll get to even hold our baby girl right after she is born. We may not get to hold her until after she recovers from her first surgery, other than just a few minutes before her surgery. My heart aches just thinking about not being able to just sit and hold our little girl like we did with our other two. Oh the little things that we take for granted.
* This will be so hard on our older kiddos. Six and almost four. My six year old is a worrier just like her momma and wears her emotions on her sleeve. She is already struggling a bit with all the changes, so it is one step at a time with her. We will try our best to make sure their routine stays as normal as possible during the time their baby sister is in the hospital. We are lucky to have a great support system of family and friends in place already that have stepped up in whatever ways they can.
* Financial worries - Because an HLHS baby's health is so critical that first year, many parents have to quit work to care for their baby. Luckily we were a two income household and I have an amazing husband that has a great job. I was an in home daycare provider and at the recommendation of my OB and others, have since quit doing daycare in order to care for our daughter when she arrives. That would have been way to much exposure to germs, not to mention time away due to NICU stay and the many doctors appts the first year. You don't realize how much that small second income makes a difference until you no longer have it. We have had to make some changes, and I'm sure we'll have to make more as unexpected expenses arise. But we will make it through it and do the best we can for our family.
* Most importantly we must remember to try and cherish every single moment we have with our little girl and to celebrate every milestone. There are no guarantees how long we get to spend with our children or other family members. It's situations like these that remind you that each day is a gift, so don't waste it.
I know I've forgotten about a million things, but this will be a reminder to myself and an information piece for others to let them know what is up ahead for us. To end this post I will put up a couple facts that I learned only after receiving our little girls diagnosis:
1) Congenital Heart Defects (CHD) are America's and every other country's #1 birth defect. Nearly 1 of every 100 babies is born with a CHD.
2) CHD's are the leading cause of all infant deaths in the United States.
http://www.childrensheartfoundation.org/about-chf/fact-sheets
It is amazing to me that even though both myself and my husband have family members that have some kind of heart condition, neither one of us knew any of the facts about CHDs. The surgeries for HLHS have only been around for 20 years. Before that, survival rates were very small. Hopefully our blog will help in some way raise awareness about the seriousness of CHD's and their lack of funding.
So here they are in no particular order:
* First and foremost - there is no fix or cure for HLHS. Our daughter will never have a fully functioning heart. Her treatment of the 3 stage surgeries will make her half a heart do all the work that a whole heart should be doing. Chances are, she will have to have a heart transplant in her late teens or 20's, but nobody knows for sure. Earlier if her heart ends up not being a good candidate for surgery. A transplant is still not a fix or cure. A transplant has their own set of problems; such as a lifetime on anti-rejection drugs and the research that shows that transplanted hearts usually last only 15-20 years.
* She will have to see a cardiologist her entire life and will have many more procedures done to keep her healthy besides her 3 open heart surgeries.
* Normal - throw that term out the window. Our version of normal will soon take on a whole new meaning.
* Your marriage will be tested.
* Your relationships with family and friends will be tested.
* Your world will become a roller coaster ride with lots of ups and downs and twists and turns along the way. All you can do is hold on and be the best advocate you can be for you baby and the rest of your family.
* The Norwood procedure is the most risky of the 3 surgeries our baby girl is required to have in order to survive. She will have to have this surgery within 4-10 days of birth to live. Her NICU stay will most likely be AT LEAST 2-3 weeks if there are no major complications. Sometimes they are unable to leave the NICU between surgery 1 and 2. We hope and pray that we are able to bring our little girl home in between her first two surgeries.
* Interstage (the period between surgery 1 and 2) is a very critical time. We will be home bound during this time and basically quarantined from the "outside" world. Besides doctors appts, our baby girl will not go out of the house. We will also have to limit visitors during this time. Most likely no children (except our own of course) and no one that has been sick or around anyone that has been sick for at least 48 hours. Interstage for us will be during the holidays, so it will be hard. I hope that family and friends understand that we have to be very cautious during this time with our little girl. A simple cold to an average/healthy child could be a hospital stay / ER visit for a child with HLHS. Her immune system will be very compromised during this time and she has to stay healthy in order to have her second surgery. And in order to survive, she has to have the second surgery.....so you understand why limiting exposure to germs and keeping her healthy is very critical. Will I miss spending time with family over the holidays....ABSOLUTELY. But if one or two holiday seasons away from family means the possibility that our daughter will have the chance at a lifetime of holidays, then it is so worth it!
* Hemi-Fontan / Glenn - The second of her series of 3 open heart surgeries. Generally this surgery goes smoother than the Norwood and the recovery time is less. The goal is for baby girl to stay healthy enough so that she can hold out and wait to have this surgery until she is 4-6 months of age.
* Fontan - the final of the 3 stage surgery. This is what finishes up the re-routing per se of her heart. Don't know much about this one other than that every mom and dad wants to be able to say that their baby is "post Fontan". Because that means that our baby's half a heart was strong enough to endure more than most people go through their entire life.
* Try to focus on the small milestones instead of the big picture. So instead of "when are we going home after surgery", instead focus on each step at a time (getting chest closed, off ventilator, feeding, adjusting meds, etc). Each one down gets you that much closer to going home.
* Trust your gut and mommy instinct. Don't be afraid to voice your opinion about your child's care.
* Chris and I will both have to learn how to care for our daughter's medical needs before she can discharge. Anything from meds, feeding tubes, pulse ox monitors to oxygen. Whatever she needs, we both have to know what to do with it.
* You will feel like you need to buy stock in hand sanitizer, soap and lysol wipes b/c you will use so much of it.
* Chris and our daughter will both have to change clothes and wash up when coming home from school and work so they don't bring something into the house unknowingly, mainly a concern during interstage b/c it will be flu and rsv season during that time.
* Most HLHS babies have GI issues and struggle to gain weight.
* Most HLHS babies will have delays and need physical therapy as well as speech, occupational and feeding therapy. Because she will spend so much time in the hospital and on her back after surgeries, she will have a lot of catching up to do. Being intubated during surgeries and after can cause trauma to the vocal cords and also aversions of having anything in their mouth, even a bottle.
* Breastfeeding may be nearly impossible. Most HLHS babies are unable to breastfeed (at least for the first couple months). Lots of babies are on feeding tubes and have to fortify to get higher calorie nutrition since they struggle with gaining weight and of course they want them a certain weight before each surgery. Nursing is more taxing on their hearts than using a bottle and wears them out quickly, burning more calories than the doctors want. I so want to be able to nurse our daughter just like I did our other two kiddos, but I know I must do what is best for our little girl. Chances are I will be pumping around the clock to keep up a good supply of milk. When she is stronger I will try to nurse again, but if I have to pump and feed through bottles or tubes, then that is what I'll do so that she can get her liquid gold.
* You don't get the privilege of just letting your child sleep through the night or sleep whenever they want to. They can't miss a feeding. Calories are so important to these babies that the hospital and eventually the parents count every single mL that they take in. Each mL is so important. So there won't be much sleep for this mom with pumping around the clock and making sure that our little girl also gets all her feeds.
* One of the hardest things for me is that I don't know if I'll get to even hold our baby girl right after she is born. We may not get to hold her until after she recovers from her first surgery, other than just a few minutes before her surgery. My heart aches just thinking about not being able to just sit and hold our little girl like we did with our other two. Oh the little things that we take for granted.
* This will be so hard on our older kiddos. Six and almost four. My six year old is a worrier just like her momma and wears her emotions on her sleeve. She is already struggling a bit with all the changes, so it is one step at a time with her. We will try our best to make sure their routine stays as normal as possible during the time their baby sister is in the hospital. We are lucky to have a great support system of family and friends in place already that have stepped up in whatever ways they can.
* Financial worries - Because an HLHS baby's health is so critical that first year, many parents have to quit work to care for their baby. Luckily we were a two income household and I have an amazing husband that has a great job. I was an in home daycare provider and at the recommendation of my OB and others, have since quit doing daycare in order to care for our daughter when she arrives. That would have been way to much exposure to germs, not to mention time away due to NICU stay and the many doctors appts the first year. You don't realize how much that small second income makes a difference until you no longer have it. We have had to make some changes, and I'm sure we'll have to make more as unexpected expenses arise. But we will make it through it and do the best we can for our family.
* Most importantly we must remember to try and cherish every single moment we have with our little girl and to celebrate every milestone. There are no guarantees how long we get to spend with our children or other family members. It's situations like these that remind you that each day is a gift, so don't waste it.
I know I've forgotten about a million things, but this will be a reminder to myself and an information piece for others to let them know what is up ahead for us. To end this post I will put up a couple facts that I learned only after receiving our little girls diagnosis:
1) Congenital Heart Defects (CHD) are America's and every other country's #1 birth defect. Nearly 1 of every 100 babies is born with a CHD.
2) CHD's are the leading cause of all infant deaths in the United States.
http://www.childrensheartfoundation.org/about-chf/fact-sheets
It is amazing to me that even though both myself and my husband have family members that have some kind of heart condition, neither one of us knew any of the facts about CHDs. The surgeries for HLHS have only been around for 20 years. Before that, survival rates were very small. Hopefully our blog will help in some way raise awareness about the seriousness of CHD's and their lack of funding.
Tuesday, September 4, 2012
Changes
It's been awhile since I've been on here to post. Lots of changes going on, but not with baby girl. We just recently got our oldest daughter started with 1st grade and are helping her get adjusted. New teacher, new bus route, new friends, new house..... Yep, new house! With just 4 weeks left til our scheduled induction, we are slowly settling into our new forever home. It feels so nice to have something of our own. A little more security for sister and brother before our newest addition arrives. Now to get all the stuff unpacked and sorted before the big day.
Wednesday, August 22, 2012
Informative website
Because there is so much crazy information floating around the internet, I tried to only stick to reputable websites or other heart family support groups and blogs.
I have found Mayo's website to be very informative in explaining Hypoplastic Left Heart Syndrome.
http://www.mayoclinic.com/health/hypoplastic-left-heart-syndrome/DS00744
I have found Mayo's website to be very informative in explaining Hypoplastic Left Heart Syndrome.
http://www.mayoclinic.com/health/hypoplastic-left-heart-syndrome/DS00744
Tuesday, August 21, 2012
Dates have been set......emotional day
Yesterday at my OB appt, we discussed induction dates. The appt went well and baby girl appears to be growing well. Her heartbeat sounds good...considering....
Today I got a message from my OB that she had gotten a hold of our cardiothoracic surgeons office, our pediatric cardiologist's office and the hospital labor & delivery unit and NICU. They are all on board for an induction date of October 4th. Our little peanuts first open heart surgery is tentatively scheduled for October 8th. Of course if necessary that will change based on her needs.
It's a relief to finally have the dates set, but at the same time it makes it that much more of a reality to me. I've been so busy lately that I haven't allowed myself much time to ponder or worry about our little girl's future. Today that all came to a screeching halt. After I messaged immediate family members and a few close friends about the dates, I started to receive text messages back from them with encouraging words and well wishes. As I'm reading through them and watching our two older kids play in the back yard, the tears started welling up. The fear creeps back in and the doubt starts to take hold. I know I need to stay positive, but I'm not perfect and there are some days that I wonder.....Why us? Why our baby? Why any baby at all? Why such a complex heart defect? Will she grow up to live a happy life? Is our family strong enough to handle this? But then I have to stop myself b/c what good comes out of that. Instead I will end on the note that we have a large support system. Our baby girl IS strong and will continue to be strong. We will all fight together to keep our little girl healthy and get her heart working to the best that it possibly can with her diagnosis.
Today I got a message from my OB that she had gotten a hold of our cardiothoracic surgeons office, our pediatric cardiologist's office and the hospital labor & delivery unit and NICU. They are all on board for an induction date of October 4th. Our little peanuts first open heart surgery is tentatively scheduled for October 8th. Of course if necessary that will change based on her needs.
It's a relief to finally have the dates set, but at the same time it makes it that much more of a reality to me. I've been so busy lately that I haven't allowed myself much time to ponder or worry about our little girl's future. Today that all came to a screeching halt. After I messaged immediate family members and a few close friends about the dates, I started to receive text messages back from them with encouraging words and well wishes. As I'm reading through them and watching our two older kids play in the back yard, the tears started welling up. The fear creeps back in and the doubt starts to take hold. I know I need to stay positive, but I'm not perfect and there are some days that I wonder.....Why us? Why our baby? Why any baby at all? Why such a complex heart defect? Will she grow up to live a happy life? Is our family strong enough to handle this? But then I have to stop myself b/c what good comes out of that. Instead I will end on the note that we have a large support system. Our baby girl IS strong and will continue to be strong. We will all fight together to keep our little girl healthy and get her heart working to the best that it possibly can with her diagnosis.
Surgery date tentatively set.....
About a week ago I received a call back from the cardiothoracic surgeons office regarding induction and surgery dates. I wanted to discuss with them what their schedule looked like around my due date so that I could discuss induction dates with my OB. The surgeon's nurse told me that she already had October 8th and/or 9th blocked off for our daughter's surgery and that would put possible induction dates at the 3rd or 4th. Beings that my husband and my 8 year anniversary is on the 9th, I asked for her to aim for the 8th, but that the most important thing is that our little one receives her surgery when she needs it. We didn't care what day. She let me know that her surgery is top priority, so she will definitely get it when she needs it, even if it's not on the 8th. She also gave me the contact for the Child Life worker at the hospital for us to contact so that we can set up a time to visit the Labor and Delivery floor of the hospital and also visit the NICU. Kind of dreading that day, b/c I know it will make it all the much more of a reality to me.
2nd Echo
Our second fetal echocardiogram was done on July 27th with Dr. B again. Not much has changed overall with her heart other than her left side of her heart being considerably smaller than her right side since the left side is no longer growing. Also noted was that she has significant endocardial fibroelastosis and essentially mitral and aortic valve atresia. Which basically means that there is a lot of "scar tissue" and there is no mitral or aortic valve opening demonstrated.
Dr. B felt comfortable that we did not need to be seen again until delivery day. He is on board with me being induced up to a week early so that everyone that is needed is present when our little girl arrives. So for now we continue with our regular OB appts and wait til our little peanut arrives.
Dr. B felt comfortable that we did not need to be seen again until delivery day. He is on board with me being induced up to a week early so that everyone that is needed is present when our little girl arrives. So for now we continue with our regular OB appts and wait til our little peanut arrives.
Sunday, August 19, 2012
Normal vs HLHS
Here is a side by side image of a normal heart compared to a Hypoplastic Left heart. The image also shows how each surgery will change the anatomy of her heart so that it is able to pump blood to her entire body.
Tuesday, August 14, 2012
What's up ahead....
As we look up ahead at what is to come, I have mixed emotions. As any pregnant mom, I'm excited to meet our little one, but at the same time I am fearful. Right now our daughter is safe. Her heart doesn't have to work as hard while in utero. The placenta and umbilical cord are her life line right now. It is difficult feeling her move and knowing she is growing stronger each day inside me, just as our other two kiddos did, but also knowing that she only has half of a working heart. As each day passes, I know that we are that much closer to the inevitable. Knowing that our daughter has to have medicine (prostaglandins) right after birth to keep her ductus arteriousis open. Although you want this to close in a heart healthy baby, in a child with HLHS, it can be fatal if it closes. Because the left side of her heart is unable to pump blood to the body, this duct is the only way for the rest of her body to receive any blood. Unfortunately it just buys as a little time to get her lungs stronger and hopefully her a little more stable while they prepare for her Norwood. Generally within 4-10 days of birth, sooner if needed, our daughter will have her first of at least 3 open heart surgeries. The Norwood is the most complex and highest risk of the 3 surgeries she will have to endure. Survival rates are around 70-75% percent for the Norwood. Not the best, but much better than close to 20 years ago when they were just coming out with these surgeries and survival rate was 15% or less. After the Norwood, the survival rate goes up to close to 90% for the Hemi-Fontan and the Fontan. Of course we are preparing ourselves for the many obstacles and complications that we are sure to come, but we are holding out hope that our little girl will be strong and able to make it through each of her surgeries and recoveries with flying colors. She has so many people rooting for her. Until my next post, here is a link that explains HLHS and the 3 stage surgeries better than I can do. Hopefully the link works, I'm still new to all this. Until next time.....
http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html
http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html
Friday, August 10, 2012
June 15, 2012
The day we found out what was wrong with our little girls heart. Chris and I chose to have his mom with us for this appointment. As a former cardiac intensive care nurse, we knew she would be able to understand all the terms that would be thrown at us this day. We went into this appt. optimistic. After our ultrasound at my OB's office, we got the chance to sit down with Chris's mom and explain what the OB's office was able to see. Lori has seen many repairs on hearts and reassured us that almost anything on the heart can be fixed medically these days. It will still be a hard journey, but most everything can be fixed. Of course we were under the impression that it was just a small hole in the middle of her heart and some calcification. Little did we know that it was way worse than that.
As I lay on the u/s table for around 30-45 minutes while "Dr. B", our pediatric cardiologist, did our fetal echocardiogram; there was complete silence in the room. He told us in advance that he probably wouldn't say anything throughout the echo, so not to be alarmed. It felt like an eternity. To top it off, our little peanut was still laying with her spine up and the Dr. wasn't able to see everything he wanted to. So off I went to walk the halls while he examined the information that he had received so far. Chris and Lori (his mom) stayed in the u/s room and attempted to keep the mood light. After about 15 minutes, Dr. B had me go back to the u/s room to see if our little girl had moved any. Spent another 10-15 minutes on the table while he tried to get a few more images of our little girl's heart. One thing he did mention at the end of the echo was that he couldn't see her aorta. When he was done with the fetal echo, he told us we would go across the hall to a patient room to discuss his findings. Before we left the u/s room he said "I'm not going to sugar coat it, it is serious" or something along those lines.
As we sit in the patient room waiting for Dr. B to come in I start to ask Lori questions and prepare myself for what he has to say. I'm asking my mother in law, "what if she needs a heart transplant or worse, what if they can't do anything for her at all". She was able to calm my nerves a bit as she reminded me that those options would be very rare.
Then the Dr. came into the room. He handed us a diagram of a normal heart and then gave us one of the heart condition he was diagnosing our daughter with. He told us that from all the imaging he was able to get, it appeared to him that our daughter had Hypoplastic Left Heart Syndrome. When I saw the color pretty much drain from my mother in laws face, I knew this was not a good diagnosis to receive in terms of heart defects. He told us that basically the left side of our daughter's heart is severely underdeveloped and not functioning. The white spot in her heart that was thought to be calcification is not calcification at all and is actually called endocardial fibroelastosis (he gave us an easier to understand term for it at the appt., but I can't remember what it was). Basically if I remember correctly how he explained it to us was that it was a thickening of the inner lining of the chambers of the heart from extra tissue, kind of like scar tissue. This condition effects how her heart pumps, therefore leading to her left side of her heart not developing appropriately.
Unfortunately, b/c the surgery for Hypoplastic Left Heart Syndrome has only been around for 20 years, there isn't a lot of information about long term outlook for HLHS kids. The oldest living patients w/ HLHS are in their early 30's. He made it very clear to us that HLHS is by far one of the most complicated heart defects a child can have. Dr. B said that there is no cure or fix for HLHS. All they can do is repair her heart in a way that will re-route how her heart pumps. She will always only have half a heart. High intensity sports probably won't be an option for her, but every child is different. Chances are she may need a heart transplant later in life and her heart weakens from only pumping with a single ventricle. Survival rates if I remember correctly are around 70%. However the survival rate for each surgery varies.
We were given 3 options for "treatment".
1) Compassionate Care - Take her home and let her live out her days at home. She would probably pass away within a week.
2) Put her on a transplant list - Donor hearts for newborns are hard to come by and chances are she would die waiting for a heart.
3) Series of 3 open heart surgeries. Norwood at 4-10 days after birth. Hemi-Fontan at around 4-6 months of age. And the Fontan anywhere from 18-36 months of age.
We chose the 3 surgeries. We can't imagine life without our daughter and feel that she deserves the right to show us how strong she is. We will hope and pray that she stays strong enough to undergo all of this and we will do our best to make sure we give her the very best life possible. This was by far the hardest day of my life. After leaving the pediatric cardiologists office, I called my mom and lost all composure. How do you deal with learning that your baby only has half a heart.
(This post is already long enough as it is so I will be sure to make another post about the aftermath of learning our daughters diagnosis and where to go from there. More info on the surgeries at a later date as well.)
As I lay on the u/s table for around 30-45 minutes while "Dr. B", our pediatric cardiologist, did our fetal echocardiogram; there was complete silence in the room. He told us in advance that he probably wouldn't say anything throughout the echo, so not to be alarmed. It felt like an eternity. To top it off, our little peanut was still laying with her spine up and the Dr. wasn't able to see everything he wanted to. So off I went to walk the halls while he examined the information that he had received so far. Chris and Lori (his mom) stayed in the u/s room and attempted to keep the mood light. After about 15 minutes, Dr. B had me go back to the u/s room to see if our little girl had moved any. Spent another 10-15 minutes on the table while he tried to get a few more images of our little girl's heart. One thing he did mention at the end of the echo was that he couldn't see her aorta. When he was done with the fetal echo, he told us we would go across the hall to a patient room to discuss his findings. Before we left the u/s room he said "I'm not going to sugar coat it, it is serious" or something along those lines.
As we sit in the patient room waiting for Dr. B to come in I start to ask Lori questions and prepare myself for what he has to say. I'm asking my mother in law, "what if she needs a heart transplant or worse, what if they can't do anything for her at all". She was able to calm my nerves a bit as she reminded me that those options would be very rare.
Then the Dr. came into the room. He handed us a diagram of a normal heart and then gave us one of the heart condition he was diagnosing our daughter with. He told us that from all the imaging he was able to get, it appeared to him that our daughter had Hypoplastic Left Heart Syndrome. When I saw the color pretty much drain from my mother in laws face, I knew this was not a good diagnosis to receive in terms of heart defects. He told us that basically the left side of our daughter's heart is severely underdeveloped and not functioning. The white spot in her heart that was thought to be calcification is not calcification at all and is actually called endocardial fibroelastosis (he gave us an easier to understand term for it at the appt., but I can't remember what it was). Basically if I remember correctly how he explained it to us was that it was a thickening of the inner lining of the chambers of the heart from extra tissue, kind of like scar tissue. This condition effects how her heart pumps, therefore leading to her left side of her heart not developing appropriately.
Unfortunately, b/c the surgery for Hypoplastic Left Heart Syndrome has only been around for 20 years, there isn't a lot of information about long term outlook for HLHS kids. The oldest living patients w/ HLHS are in their early 30's. He made it very clear to us that HLHS is by far one of the most complicated heart defects a child can have. Dr. B said that there is no cure or fix for HLHS. All they can do is repair her heart in a way that will re-route how her heart pumps. She will always only have half a heart. High intensity sports probably won't be an option for her, but every child is different. Chances are she may need a heart transplant later in life and her heart weakens from only pumping with a single ventricle. Survival rates if I remember correctly are around 70%. However the survival rate for each surgery varies.
We were given 3 options for "treatment".
1) Compassionate Care - Take her home and let her live out her days at home. She would probably pass away within a week.
2) Put her on a transplant list - Donor hearts for newborns are hard to come by and chances are she would die waiting for a heart.
3) Series of 3 open heart surgeries. Norwood at 4-10 days after birth. Hemi-Fontan at around 4-6 months of age. And the Fontan anywhere from 18-36 months of age.
We chose the 3 surgeries. We can't imagine life without our daughter and feel that she deserves the right to show us how strong she is. We will hope and pray that she stays strong enough to undergo all of this and we will do our best to make sure we give her the very best life possible. This was by far the hardest day of my life. After leaving the pediatric cardiologists office, I called my mom and lost all composure. How do you deal with learning that your baby only has half a heart.
(This post is already long enough as it is so I will be sure to make another post about the aftermath of learning our daughters diagnosis and where to go from there. More info on the surgeries at a later date as well.)
Tuesday, August 7, 2012
Everything happens for a reason....
...that is what they say anyway. My high school best friend used to say it and as an adult I hear it all the time as well. Most of the time you don't know the reason, but sometimes it seems so obvious that you have to believe that someone more powerful than you had a hand in it. As I sit and contemplate everything that has been thrown our way recently, all I can do is sit back and wonder.
A little back story: Memorial Day weekend two years ago. We got a call that my husband's dad was very ill and we needed to take him to the hospital about 3 hours away to receive care. Off we went, both our kids in tow and ended up sitting in the ER from 7pm til 2am with our kiddos and their grandpa. He ended up being misdiagnosed and sent home a couple days later, only to be life flighted back to the hospital a day after being discharged. From there, things took a turn for the worse and he spent around 4 months in the hospital. More than once my husband was told that he needed to call in his family b/c they didn't expect his dad to make it. For the most part, my husband was by himself out there with his dad and making medical decisions on his dad's behalf since he was on a ventilator and couldn't make them for himself. It was lots of time off work for my husband, time away from his wife and kids and lots of money on gas and food while he went back and forth and slept in the waiting room while he was there. Not to mention the emotional toll it took on my husband. Such an emotional time for all of us. Luckily, his dad is still with us today and beat the odds. The doctors did not expect him to live, but he did. Miracles do happen. He now lives on his own and is a much better grandpa than he was before his health scare. It brought us all closer as a family. Maybe there was a reason behind him getting so sick. We thought at the time that it was the hardest thing we ever had to deal with and couldn't wait to catch a break. Little did we know that this was just a prep for what was really in store for us.
Fast forward: Memorial Day 2012. We lost one amazing woman on this day. Chris's grandma passed away. She was such an amazing and strong woman and our kids adored their great-grandma. She was my husband's last living grandparent. We are saddened that our unborn daughter will never get to meet her Grandma Lorraine.
Four days later - the day of Gma Lorraine's visitation. We had an ultrasound scheduled for 3:30 pm that day and then we were going to head straight to the visitation. I was 21 weeks along. Because Chris's sister was born with Down Syndrome and had a hole in her heart at birth, we had a Level 2 u/s to check the heart for any defects. The u/s ran late and it took two techs. My husband caught on that something was wrong, but I was oblivious. Needless to say, all the techs said was that they couldn't get a good picture of our little girls heart b/c of the way she was laying and that our doctor would talk it over with us. And here comes the smack in the face.....my OB told us that there was something wrong with our daughter's heart. The u/s pictures weren't very clear or detailed, but it looked like there was a hole in the middle of the heart and some calcification on the top. She referred us to a pediatric cardiologist to get a fetal echocardiogram done. This appt would not be til June 15th, when I was a little farther along. Facing the family that night and trying to deal with all the emotions from this and the emotions from losing our grandma was a little to much for us. We made it through, but it was not easy.
Everything happens for a reason:
- Chris's dad gets sick, and a year later on the same holiday, we find out even more terrifying news about our unborn daughter.
- Since this is our last child, I decided to switch OB clinics to receive a more personal experience. And boy did I get it. My OB is one of the most amazing and caring doctors. She also just so happened to graduate high school from my home town with my oldest brother. I switched on a gut instinct, and now I know that the reason was b/c I would need her standing by my side to help me through this pregnancy and diagnosis.
- My mother in law is an RN at the hospital where we are delivering our little peanut. She worked many years as a cardiac nurse in the cardiac intensive care unit. She has worked alongside the pediatric cardio thoracic surgeon that will be doing our daughter's surgery.
When I look at those 3 things listed, I can't help but realize that things really do happen for a reason. I still don't know what the reason is for us to become the parents of a heart baby or why God chose us. All I know is that we have a rough road ahead, but we also have a large support system. All we can do now is hope and pray that our daughter is strong enough to pull through all her surgeries and live a happy life with her big sister and big brother that can't wait to meet her.
Gotta start somewhere
I guess I have to start somewhere, so here goes. This blog is being created as a way to share our story with family and friends as we go through the scariest journey of our life. I guess there is a saying "expect the unexpected" for a reason. Our unexpected happened when we received the news that our unborn daughter had a heart defect. And not just any heart defect, hers is one of the most complicated as they come. Our daughter has been diagnosed with Hypoplastic Left Heart Syndrome. (more on her diagnosis to come in later posts)
I have always been better with my thoughts and emotions by writing them down, and after much thought and discussion, have decided that a blog is the best way to let everyone know how our little peanut is doing throughout her heart journey. And frankly, I know I will be an emotional wreck come October when she makes her debut, so this will be easier to relay information than having to repeat ourselves over and over again. I think that would be to much for me.
We know that this is going to be the toughest journey of our life so far, but our hope is that not only our blog will keep family and friends informed, but also help other families that receive the same diagnosis. In my search to find answers after receiving our little ones diagnosis, it was other "heart family" blogs that reminded me to keep the faith and have HOPE.
I have always been better with my thoughts and emotions by writing them down, and after much thought and discussion, have decided that a blog is the best way to let everyone know how our little peanut is doing throughout her heart journey. And frankly, I know I will be an emotional wreck come October when she makes her debut, so this will be easier to relay information than having to repeat ourselves over and over again. I think that would be to much for me.
We know that this is going to be the toughest journey of our life so far, but our hope is that not only our blog will keep family and friends informed, but also help other families that receive the same diagnosis. In my search to find answers after receiving our little ones diagnosis, it was other "heart family" blogs that reminded me to keep the faith and have HOPE.
Subscribe to:
Posts (Atom)