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tractions almost the last 2 weeks and the doctor has ordered me to lie as low as possible at this point at this point i am still able to work since it isn t strenuous just playing the piano i think my fingers can handle it ü i also am done working in two weeks anyway but most everything else is off limits i have started a medication that is supposed to relax the uterine muscles and decrease contractions and i go in for an appointment to check up on how that is working tomorrow it is true that with today s modern miracle of medicine babies born at 29 weeks can live and be just fine however with our son if he is born premature his chances of survival are extremely thin this is not what we wanted to hear yesterday there is already a lot of stress with our situation and this added worry is hard to swallow we are okay though so don t fret and i think it is perfectly normal and okay for us to worry but despite our worry we still have faith and hope that everything will work out in the long run we know in our hearts our heavenly father and savior are mindful of us and our son and there are many angels watching over all of us i have no doubt the plan is to keep baby boy in the womb as long as possible hopefully to 39 weeks so the rest of his organs and body can get big and strong anything sooner causes for more added concern so please keep him in your prayers as much as we are excited to meet our little guy we aren t that anxious and we want to give him every hope possible to make it through this scary defect he has for those of you who don t want to read the entire story of how we came to find this information i will explain at the beginning of this post what exactly hlhs is and what the plan of action is once our son is born my understanding with all of this is still very vague so please forgive me as i try my best to explain everything also please forgive me for how long this post is i write all this information for two reasons 1 for my own purposes and 2 in hopes i can answer everyone s questions that may arise in the future we have known ever since my first ultrasound at 12 weeks that something may be going on with the baby and through tests and time have finally received an answer at my 20 week appointment they did an ultrasound with a pediatric cardiologist in the room he and the ultrasound technician viewed the heart and the blood flow after he finished he explained to us they did find something wrong with the heart and he spent a while with us explaining what he found in a nutshell they see our son has a serious congenital heart defect known as hypoplastic left heart syndrome or also known as hlhs essentially what it is means is that the left side of our son s heart did not develop completely this is a rare condition they see about 960 cases per year in the u s as many of you know both my father and my sister natasha were born with congenital heart defects as well they both shared one of the same problems and then both had different heart problems from each other sadly both my father and natasha have passed on now my dad passed away when he was 44 i was going on 15 and natasha passed away when she was 21 i was 17 i asked the cardiologist if what our son has is the same as what either of them had and he said that what our son has is linked to the second condition my sister had sub aortic stenosis but it is not the same unfortunately our son s is a little worst case scenario because the left lower side of the heart just did not develop in a healthy heart the left side of the heart receives oxygen rich blood from the lungs and pumps it out to the rest of the body with these structures underdeveloped they cannot circulate blood to other organs and the right side of the heart must pump blood to both the lungs as it does normally and then to the rest of the body so the right side of the heart is taking on the responsibility of the left side doing double duty a situation which cannot be sustained for long the right side of the heart is considered the low pressure system and the left side of the heart is considered the high pressure system and because the right side of the heart is only built to handle the low pressure it cannot handle the high pressure work for very long the cardiologist advised us that while our son is in the womb he is perfectly healthy and fine but once he is out of the womb is when he will experience complications he said at this point all the functions of the heart are looking okay but did advise 2 things could still go wrong in the womb he said these are rare so i won t get into this i am just so happy to hear that for now our son is able to continue to grow his other organ s healthy and strong just stay in there little buddy the positive of all this is that there are surgery s that can be performed once our son is born this is such a blessing that there are surgeries to treat this complex heart issue all children born with hlhs will undergo at least 3 heart surgeries within the first 3 years of their life they will be on multiple medications throughout their life could experience other heart complications and the potential for needing a complete heart transplant sometime in life is highly probable but the positive news is the medical world is able to do something about it the relief in my soul cannot be explained enough it truly is a blessing immediately after birth our baby boy will start on medication to keep blood circulating to the body to keep the ductus arteriosus open which usually closes a few days after birth and then the doctor s start with the first stage of surgery we hope the first stage of his surgeries will start with a less invasive surgery heart surgery combined with cardiac catheterization just a few days after his birth i only add hope because we won t know until he is born if he will need the more invasive first stage surgery either way he will have some sort of surgery within the first week of his life then once our son is around 3 6 months they will perform an open heart surgery and another later anywhere between 18months 3 years of age additional heart surgeries may be needed throughout the course of his life but the very best news we could hear is that he does have a chance of survival as long as he has these surgeries the cardiologist lastly advised us that the worst case scenario is a heart transplant sometime in his life the likelihood of him needing a heart transplant will only be known once he is born and seeing how his body responds to the surgeries he will have and how he develops the unfortunate thing with these surgeries is they are not a cure just a temporary fix so he can have a somewhat normal life in most cases the right side of the heart eventually wears out from doing all the high pressure work that it is not designed to do and that is when future additional surgeries will be considered including a heart transplant but hopefully not the unfortunate thing with hlhs is the right side of the heart is for lack of a better word the weaker side of the heart and is not very equipped to handle the high pressure work of the left side of the heart the point of the series of surgeries our son will undergo is to basically rig the right side of the heart to do the left side of the hearts work are you confused yet however as i previously said the amazing news is that there is a plan of action for babies born with hlhs and surgeries that can help sustain life our son can actually have a fairly normal life minus running around a lot on the soccer field the doctor advised us our son will never be an olympic athlete i told him that was okay since neither of us are much into sports anyways ü with any heart surgery mortality rate is high but i have every hope and faith that through the marvels of medicine prayer priesthood blessings and faith our son can experience the successes of this all birth plan what is going to happen is i now only see the high risk obgyn dr van bohman i have a lot of faith and confidence in this man and i would prefer no one but him to deliver our baby boy i will also have to deliver at sunrise hospital i originally planned on st rose this is due to the fact that the neo natal care is best at sunrise and any high risk pregnancy baby is delivered in this hospital sunrise hospital is where our baby boy will be staying for the first bit of his life and where he will have his surgeries one of the questions i had for dr bohman when we found all this out was if i could still deliver the baby vaginally dr bohman advised that i am still able to deliver him normally however he strongly advises against it his reasoning for this is that with a scheduled c section we can plan for all of the heart specialists etc to be there on hand versus me delivering whenever and taking the chance they all may not be around he explained that with all the specialists around they can start working immediately on any issues that may arise since obviously we will not know how our son responds to the outside world until he is here there are instances where hlhs babies are rushed into surgery immediately after birth and if this happens in our son s case then we want all the specialists there and ready knowing all of this there is no question in my mind that this is the best route to go for our son i have prayed about it and although a c section was not what i wanted i have decided that if it is a best case scenario for our son i am more than willing to do it so that is that i will deliver at sunrise hospital via scheduled c section with dr bohman you can stop reading from here if you don t want to know how exactly we came about to learn of everything from here on i will explain the synopsis of how we came about to learn about our son s condition i repeat please forgive me for how long this post is i again write all this information for two reasons 1 for my own purposes and 2 in hopes i can answer everyone s questions that may arise in the future as many of you may know it took me 3 years to get pregnant with our son i did get pregnant a year and a half ago but unfortunately miscarried we would have had a baby girl that was a grievous time for me but i got through it with the love and strength of my husband and family and with the peace of the gospel and our savior s love and comfort when i got a positive pregnancy test this past august 2013 both bret and i were so happy however we were cautiously happy as most people are after experiencing a miscarriage and of course after what felt like forever of trying to conceive i found out i was pregnant during a short time period where i had no insurance that is a long story i will save you the grief you are welcome ü therefore we couldn t get me in to see a doctor until i was 11 weeks pregnant every day before that appointment i was nervous about losing this baby but still remained hopeful and prayed for the best on october 10 2013 bret s birthday we got to go to our first doctor appointment it took the doctor 4 minutes longest 4 minutes ever but he found the baby s heartbeat and that became as bret put it the best birthday present ever it was such a relief hearing that little pitter patter after talking to my obgyn about our family history both my father and older sister natasha were born with congenital heart defects he decided as a common precaution to also refer me to a high risk obgyn he explained it was just a precaution and most likely nothing would come of it this didn t make me nervous because my sister stephanie when she was pregnant with my nephew harrison had to do the same thing they watched harrison s growth and heart throughout her pregnancy and he was born a beautiful and healthy baby boy seriously the kid is so beautiful yes i am obsessed with him bret and i went to our high risk appointment to meet with dr bohman the following week let me just stop for a moment and talk about how wonderful dr bohman is because he is he has a wonderful bedside manner and has a calm about him that kept me grounded during hard moments the ultra sound tech did the scan and she was very quiet the entire time bret being his optimistic happy self i love this quality about him just kept saying how cool it was to see everything on the ultrasound as soon as the tech walked out of the room i knew something was wrong there s just a feeling you get and i told bret sure enough a few moments later dr bohman came in and told us he was very sorry but they did find something to be concerned about they could see on the scan the baby had cystic hygroma only found in about 1 of pregnancy s and usually points out that the baby has either down syndrome turner syndrome or sometimes a heart defect i will be honest with you the news devastated me after years of trying to get pregnant and wanting to start our family all we wanted was a healthy baby it didn t seem like too much to ask the doctor was leaning more towards the fact the baby could have either down s or turner s syndrome since that is the most common they find with the cystic hygroma and we decided to do some blood work to pull what information we could from it for those of you who don t know what turner syndrome is the baby is born with 1 x chromosome so they are missing the other half of a sex chromosome to compare females are born with xx and males are born with xy please don t mistake the grief i felt in that moment because no matter what i knew i would love our baby to the moon and back but hearing your child could have some sort of syndrome or difficulty is a punch in the gut to i believe anyone your mind races with what complications your baby will have how much pain they may face due to said complications and the struggle they may face ahead and then you start to worry about how in the world you are going to afford everything what issues you may have with insurance if there was anything you did that could have prevented whatever issue and your mind just keeps racing and racing from there to cut this story of ours as short as possible which is hard to do with a detailed oriented gal ü we received the test results a week later that our baby had less than 1 chance of having down syndrome and 0 chance of having turner syndrome since they were able to see 2 chromosomes in the blood work my brain couldn t wrap itself around the fact they knew the gender of our baby just through taking some of my blood freaking crazy science is not my thing so i am still fascinated by it all the genetic counselor who called me with the results asked if i wanted to know the gender of the baby since they already had the information and i said yes before even thinking haha so i found out at 13 weeks that we were going to be blessed with a baby boy from there the doctor said we would continue to watch the hygroma to see if it decreased or stayed the same if it increased it would mean i would lose the baby and start looking at other possibilities at this point we thought and hoped that it also could have been nothing because c...