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cried a little because i missed baby so much and wanted her with me sitting next to our christmas tree i wanted to watch it s a wonderful life with her and i thought of two and three christmases ago when we had a chemical and a bfn i cried and cried on those those days and you know what the tears i cried last night felt just the same as the ones i cried those years ago it was such a strange thought i almost stopped crying i mean intellectually i know this christmas is way better i have babies for goodness sake but the sadness for a s heart and for not having her with me it s not an intellectual thing i could tell myself this year was better but i didn t feel better at all and now i wonder is this the way it is to suffer secondary infertility to tell yourself yes i m a mom and i have a child but yet to still feel that same sadness as a sufferer of primary infertility i could never really relate how could i when i wasn t and might never be a mom and yet and yet i think a small part of me gets it now still the intellect doesn t lie it s still better to have one than none and this year is better for me because i got to open presents with one baby this morning and am going to go visit the other one real soon and that s no small thing and now the lyrics to a favorite christmas song of mine welcome christmas welcome christmas come this way fahoo fores dahoo dores welcome christmas christmas day welcome welcome fahoo ramus welcome welcome dahoo damus christmas day is in our grasp so long as we have hands to clasp fahoo fores dahoo dores welcome christmas bring your cheer fahoo fores dahoo dores welcome all whos far and near welcome christmas fahoo ramus welcome christmas dahoo damus christmas day will always be just so long as we have we fahoo fores dahoo dores welcome christmas bring your light hum next two lines fahoo fores dahoo dores welcome christmas christmas day welcome christmas fahoo ramus welcome christmas dahoo damus welcome christmas while we stand heart to heart and hand in hand fahoo fores dahoo dores welcome welcome christmas day welcome welcome christmas day 8 comments posted in uncategorized posted by katedaphne december 23 2009 not exactly a comfort battling infertility you hear a lot of ignorant comments the kind that are meant to be helpful but are really nothing of the kind just relax just adopt you ll get pregnant if you just adopt to the list i would like to add the comment that really gets my goat as a heart baby momma don t worry she ll never remember any of this while technically true it does not comfort me in the least in fact it strikes me as criminally insensitive sure she won t remember spending months in the hospital including her first christmas she won t remember having all these operations she won t remember having countless ivs inserted and removed she won t remember being poked and prodded and messed with and drugged etc etc etc but she is experiencing these things right now doesn t now count it makes me so sad that she has to face all this i don t want her to have to suffer any of this i wouldn t want to go through this why would i want my baby to remembering it is not the point this is her life and i just wish she had a happier easier one is that so wrong we don t tell adults going through tough times that in five years they will have forgotten all about it why do people think of infants so callously luckily she is a pretty tough little cookie she is one of those people who is able to bear up with a smile she takes whatever is dished out to her and never holds a grudge she doesn t whine and rarely cries she s really a trouper and i admire her tremendously that said i still wish her babyhood was a more pleasant one 3 comments posted in uncategorized posted by katedaphne december 22 2009 chd and ali intersect for my readers who are pregnant or hope to become so here is a short but great article on the 20 week ultrasound it s not the big u s when we find out the gender it is a whole lot more at ours we learned we had two girls and that one had a serious heart anomaly we were sent immediately to the fetal cardiologist for further examination by the end of the day we had a diagnosis a plan for monitoring the rest of the pregnancy and a plan for where and how the birth would take place if these things had not occurred our heart baby would ve had an even more difficult time in fact i think the early diagnosis and detailed birth plan saved her life http www examiner com x 29454 pregnancy health examiner y2009m11d9 the top five questions to ask during your 20week ultrasound to detect congenital heart defect the top five questions to ask during your 20 week ultrasound to detect congenital heart defects november 9 8 58 pm pregnancy health examiner jasmine jafferali according to the american heart association aha congenital heart defects chd are america s 1 birth defect nearly one of every 125 babies is born with a chd almost 1 of all children born each year here are more facts and stats from the aha congenital heart defects are america s 1 birth defect nearly one of every 125 babies is born with a chd almost 1 of all children born each year congenital heart defects are the 1 cause of birth defect related deaths 1 in 3 children who die from a birth defect have a congenital heart defect this year almost 40 000 babies will be born with a congenital heart defect in the u s twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined yet funding for research of pediatric cancer is 5 times greater from 1993 to 2003 death rates for congenital heart defects have declined by 31 due to advances made through research there is not yet a preventative cure for any type of congenital heart defect of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research most of the time chd is overlooked during the 20 week ultra sound education is imperative and urgent dr nina gotteiner a fetal pediatric cardiologist at chicago s children s memorial hospital provides imperative information and a list of proactive questions that every expecting parent should know by asking these questions expecting parents and their doctor can proactively identify heart issues before birth and as a team work together to prepare for any potential heart issues that may arise after birth here are the top five questions expecting parents should ask their doctor during the 20 week ultrasound exam 1 do you see 4 chambers 2 do you look at the arteries or outflow tracks as part of your scan note extremely important to focus on artery views chd often missed if only a standard chamber view is performed 3 are the heart and stomach in correct positions both organs should lay on the left side of the fetus 4 is the heart rate normal is the heart rate too slow less than 100 beats per minute too fast over 200 beats per minute or irregular note a normal heart rate range for a fetus is 120 180 beats per minute 5 is the heart function normal does the muscle work normally is everything hooked up correctly this is what families of chd babies want you to know knowledge is power just by asking the right questions and being an advocate for your babies health is a step towards greater awareness 4 comments posted in uncategorized posted by katedaphne december 21 2009 chds congenital heart defects the very wise kami asked for a quick tutorial on the heart problems we are facing so here is a very layman s description on babygirl s condition including some of the medical terms in bold for those of you who like to google things it is complicated but try to hang with me her cardiovascular system is severely malformed this apparently happened just a few days after implantation no one knows why but it is thought maybe genetic factors combined with environmental factors it is not related to her conception ivf or her status as a twin and the other twin is completely unaffected first the heart organ itself is malformed the right ventricle which pumps blood to the lungs to get oxygen is extremely small and basically nonfunctional hypoplastic right heart before birth they thought she might not have one at all but it turns out she does but it doesn t work for various reasons so she has no way to get her blood oxygenated so her body can t get the oxygen it needs so she is a single ventricle patient this is life threatening actually it cannot support life without corrective surgery she would surely die also the heart has two upper chambers the right and left atriums atria each is uniquely formed and has different functions not just one happening to be on the left and one on the right but hers formed as two lefts so the one on the right side is a second left atrium if that makes sense i can t explain exactly why this is bad but it is this is called left atrial isomerism in addition the blood vessels in her cardiovascular cv system are seriously weird major vessels are in the wrong place go the wrong way connect to the wrong place etc etc this is among other things interrupted inferior vena cava she also has pulmonary stenosis which i can t explain but wikipedia can a valvular heart disease in which outflow of blood from the right ventricle is obstructed at the level of the pulmonic valve but wait there s more her heart points right not left and is on the right side of her body this in itself is not dangerous many people have dextrocardia and live just fine she has heterotaxy a rare congenital defect in which the major visceral organs are distributed abnormally within the chest and abdomen copied from wikipedia her bowels are folded in an incorrect way malrotation of the bowels her stomach is more on the left than the right where it belongs the appendix which i think is supposed to be on the lower right side was on the opposite upper left i forget she had an operation to repack the bowels in a safer formation the other way can cause dangerous or even fatal problems volvulus that is how bee gee member maurice gibb died at age 50 something and at the same time they removed her appendix it was healthy but appendicitis later in life would be problematic for her associated with the isomerism is polysplenia having many little bitty spleens instead of just one which may or may not be functional hers appear to be functional for now at least if it they fail she will need to go on prophylactic antibiotics for life there are other issues but these ar the main ones and the ones i can explain best if only in mom terms oh and did i mention she was on a ventilator for so long that she is basically unable to bottle feed so she has a feeding tube a g tube specifically a mic key button we work with her on bottle feeding but it is slow going she does have a good sucking reflex and loves her pacifier so the corrective heasrt surgery she needs to survive is called the fontan series first as a newborn in her case at 3 1 2 days old a bt shunt is inserted to direct some blood to the lungs to pick up oxygen this is merely a stop gap measure to keep her alive until she is big enough to have the real repairs done the shunt is a synthetic tube thingy it doesn t grow with her and is a tenuous but effective help for a small baby second is the glenn which is the one we are awaiting now in the glenn the surgeon basically cuts and reconnects some arteries to send blood directly to the lungs without needing the heart to pump it there it is mainly the blood coming in from the upper half of the body but with our girl s unusual blood vessel formation it will actually reroute about 75 of her blood this is a good thing at this time the surgeon will also go in and make some other repairs inside her heart and to some other arteries but the glenn is the main thing when she is two years old the fontan procedure will do the same thing for the blood coming in from the lower part of her body after the blood is oxygenated in her lungs it comes back to her heart and the ventricle that she does have will pump it out to the body so there you have it this is not expert medical opinion or explanation just a brief outline of our problems as i understand them i thought learning the reproductive system so i could understand my if treatment was difficult this is a million times more complex and the docs tell me that on a scale of 0 100 with 0 being a normal heart system and 100 being the most complexly deformed anatomy we have about a 95 there s no hope of me becoming as knowledgeable in this as i was for my own if problems so i just try to learn a little more each time they tell me things to ask a question or two each day and to know i have excellent docs who will give my girl the care she needs they tell me when the fontan is done she ll lead a pretty normal life she won t be an athletic type but we ve been told not to raise her as a cripple their word not mine but as a regular kid who just may not be able to particpate in gym class sometimes one web site i like is http tricuspid wordpress com blog of an adult chd patient great info inspiring story otherwise i do not spend much time on web sites bc it is too confusing and frankly her particular condition is very rare i have been told her cardiac anatomy is unique so there isn t a lot out there that may pertain to her well i have learned that chd are the most common birth defect affecting 8 or 9 out of every 1000 births or 1 in 112 to 1 in 125 many are easily treatable or don t need treatment some obviously not so much her glenn has been rescheduled for tuesday dec 29 there was hope we could await that here at home but she is not stable enough to do so so she ll be in the cv icu cardio vascular intensive care unit until then and during the recovery period 1 2 maybe 3 weeks i am so sad about this not just that we can t have her back or have her back over christmas but that she is unwell enough to need to be there at all i am grateful to have babies to spend christmas with unlike the horrible christmases past which featured bfns chemicals etc but oh this is hard 8 comments posted in uncategorized posted by katedaphne december 19 2009 other people s kids even before our if battles i wasn t fond of other people s kids my students in my middle school class excepted i find that hasn t really changed a whole lot now that i have a couple myself actually it s really certain other kids parents i don t take to well exhibit a in the waiting room at the hospital yesterday we had just learned the surgery would be cancelled and were waiting for her to wake up from the anesthesia and come back to her room i was super stressed i tend to remain pretty calm before and during difficult things and have my reaction later so i was pretty much silently and invisibly except to my dh melting down in my chair the waiting room is pretty small and there was one other family there mom dad grandma and 10 year old boy they were also waiting for a baby to come out of heart surgery i gather...