i'll take an emotional roller coster with a side of hot mess, please.

as a mother, i want nothing but the very best for my children. i'm not sure i know a mother who doesn't feel like that. we want our kids to grow healthy and happy and have every chance at every opportunity in life. we want their lives to be better than our own and try our hardest to make sure that happens.  so when circumstances sort of spiral out of control and we can't fix things, like they have for me, lately, what's a mama to do. to feel. to respond.

i received a call from the genetic counselor at our perinatal clinic last tuesday. she left a message simply saying she had the results of our verified test and to give her a call at the clinic, or if she wasn't there, she left her cell number...yeah, not a great sign. when we received the positive news regarding the trisomies 13, 18 and 21 the nurse who called told me the results in a voice message.  seeing as how this was not a nurse calling, but the genetic counselor, i knew.  so i called her back and she confirmed my suspicions. our daughter has turner syndrome. after i got off the phone with her, i sat at our dining room table for a few minutes staring at the wall, trying to absorb this information. i knew jeff was on his way home, so i sent him a quick text saying i had news, but wanted to tell him in person.  and then the tears came.   a few minutes later jeff came flying through the door searching my face for an answer.  all i could manage to blurt out was 'she has turner syndrome,' and the lump in my throat took over and i couldn't do anything but sit and weep.

from last tuesday until yesterday afternoon i was a hot mess. anxiety set in once again and i couldn't bring myself to buy my sweet little girl anything more. no clothes, no blankets, nothing. i couldn't allow myself to get any more attached than i already was. i wanted to protect myself the only way i knew how from the worst possible scenario.  i had already pictured her in the outfits we've bought and it was like a knife in my heart to think she may never wear those. i knew from the reading i had done that the majority of turner syndrome girls have heart defects, and what's more is the majority don't make it to term. there's also the physical drawbacks and i was grieving those possibilities as well.

yesterday afternoon we had another ultrasound. i wasn't as nervous or anxious before this one as i had been in the past, and i'm not entirely sure why, other than maybe i was expecting the worst.  it was kind of a big deal seeing as they were doing a fetal echocardiogram...taking a detailed look at her heart to check for any defects.

i sat on the table as the tech squirted the warm jelly onto my stomach, staring at the t.v. screen in front of me.  i wanted to see her. badly.  i wanted to see her heart beating, to see her wiggling around doing her dance routine. i longed to see her little face. and she did not disappoint.  she is the stinking cutest little girl i have ever seen in my life. ever.  her profile is beautiful.  her legs are perfect. her feet are needing some attention from my lips.  i am completely smitten with her.  yes, she still has the hygroma, and yes there is some fluid around her skull. but her heart is in perfect condition. perfect. condition. there is no fluid internally, either, which is amazing.  she seems to be a perfectly healthy sweet little babe, aside from her diagnosis.  enter big sigh of relief.

when our tech was done she left to show the results to the doctor. a few minutes later doctor mandsager, our tech, and two students (what?) walked through the door to do another scan and talk about the results.  wasn't expecting to see students, but it makes sense seeing as how we're a pretty rare case in pregnancy world.  doctor mandsager told us that her heart seemed to be just fine. we're not out of the woods yet, but he is reasonably optimistic for a good outcome. meaning, baby girl has a better chance (70-80%) of making it than not.  enter second big sigh of relief.  we need to continue to monitor the fluid around her skull and the hygroma, but both jeff and i could tell a big difference in his attitude -more positive- since our last ultrasound...which was only three weeks prior.  we talked a little about turner syndrome and what that typically looks like. unfortunately our little girl will not be able to have children biologically and that hurts both jeff and i.  yes, there's always adoption, and maybe that's where god will lead her. but the fact still sucks. she will be shorter than most, although i've done some reading suggesting to start a growth hormone around the age of four, and by doing so she'd have a pretty good chance at attaining an average height. if we didn't do that, she could very well be four and a half feet tall. and then around the age of thirteen she would start estrogen.  this is all very case based, so it may look different once she's finally here, but it gives us an idea.  and at our next appointment we will talk with the genetic counselor who will most likely be able to give us more information and answers....i hope.

after leaving the clinic, jeff and i went to have some lunch and all i could think about is how happy i was. i finally felt she was going to be okay.  tears pooled my eyes as i ate and looked at her photo.  we talked about how much it hurts us she won't have her own children (biologically), but how thankful we are she is a fighter. i also mentioned how wonderful it will be to tell her someday that she was very sick and the odds were against her, but god performed a miracle, and she is here for a reason.

needless to say, since the very beginning of this pregnancy...well, i guess since our first prenatal appointment, there has been every emotion invented running around in my head. i have felt every single one of them. my poor family. but more on that in another post.

thanks for checking in on us.  i'll leave you with a couple photos.

21 weeks

baby update and a belly photo...finally

i realize it's been over a week since our last ultrasound and i'm so sorry i haven't updated the results here on the blog.  jeff's computer finally died after six years and so he's been using mine until he get's a new one. plus i've been preoccupied with two little busy boys.  

so last friday, the 14th, we headed to our appointment. both jeff and i were nervous about what we were going to see. when we arrived at the clinic there wasn't much of a wait, thank goodness. they took us back to the ultrasound room (which, is it me or are those rooms always the coldest!), and got right to work. i love how there's no dilly dallying.  as soon as Baby came onto the screen we could still see the hygroma. the great news is it didn't appear to have gotten bigger!  both jeff and i were so relieved at that. our technician did a bunch more measurements and looked at the heart a little bit and from what our doctor told us it looks good so far, though they couldn't see very much since it was so small.  we also confirmed that we are having a sweet little girl!  roman has been wanting a girl all a long and, frankly, viggo is too young to care, though he does love babies.  jeff and i are excited to welcome a daughter into this world. sheesh...what's THAT like? :)

after the ultrasound, the doctor came in and told us a little information.  it appears that the swelling around her body is almost gone (yay!) and the cystic hygroma appears to be softer or squishier than it did before. now, he didn't say this, and i didn't think to ask in the moment, but our assumption is that it her lymphatic system appears to be correcting itself and the fluid around her body, and possibly the hygroma, is beginning to resolve.  Q the choir! we left feeling optimistic. something we haven't felt in a long time.  

God is performing a miracle right in front of us and it is so amazing.  so this is all good news, yes, but there is technically still a possibility things could go wrong.  i have another ultrasound on october fifth to look more detailed at her heart and see how it has formed and if there are any defects within it.  we're also waiting on the results to determine if Baby girl has turner syndrome, which, i'm hoping we get that news tomorrow. if she doesn't that would give her better odds at a good outcome. but even is she does have it, it's one of the more manageable syndromes out there, as far as i know. 

with our good news, i've finally allowed myself to celebrate a bit. after our appointment we went and bought her a sweet little outfit from gap...and i haven't been able to stop since. i'm in trouble. 

 i guess that's all for now!

oh, and yes, we do have her name picked out, and no, we won't be telling you. ;)

here we are at 19 weeks...in the mall bathroom. 

xo

doing a happy dance.

i literally just got off the phone with jeff, holding back tears of joy. and right before that with our doctors. the blood test i had done last week not only came back sooner than we expected it to, but had even better news to share.  the words, "hi sarah, your blood work came back negative for trisomy 13, 18, and 21" are the best words i have heard since the beginning of the month.  this in and of itself is God's doing.  We praise Him for this wonderful news, and we thank every one of you who have been diligently praying for us and this sweet baby. and encourage you to keep on praying.  

there's still a chance (if we're having a girl) that baby could have monosomy x- turner syndrome. they didn't order that test with the others so all the blood sample has been used.  this means i have to wait until our next appointment to have more blood drawn, which, given the hope of today's news, i'm okay with waiting for now. and to put the cherry on top, they were able to move my next ultrasound up from september 19th to the 14th!  so five days sooner to have a detailed ultrasound to see how baby's heart and other organs are doing and to monitor the hygroma and hydrops. 

what we are praying happens is baby's lymphatic system corrects itself before his/her heart gives out.  these next few weeks are crucial to that.  if by twenty weeks (i'm sixteen weeks today) all fluid has resolved and the cystic hygroma has, at least, shrunk in size, this baby has a great chance at a normal outcome.  

keep praying!! He's listening!

the appointment.

i had been anxiously awaiting our appointment since it was scheduled. i called three days in a row and then once more to see if we could get in earlier than the original date given to us. luckily, after day two of checking there had been an opening for a whole week earlier. enter august twenty second, two thousand twelve.

the morning passed by incredibly slow on wednesday. i found myself counting down the hours and not exactly on top of my mom-game. finally the time came to leave. good thing we were late because so was the clinic. after filling all the paperwork out we waited another 25 minutes before the ultrasound.  once we got settled into the ultrasound room, the tech got to work.  it was clear to me as soon as we could see our sweet baby on the screen that the cystic hygroma was enormous. it appeared to be the same size as baby's head. i don't know if it was really that big, but goodness, it had definitely not gotten smaller. the fluid around baby's body was also still there. that's called hydrops.  essentially it's edema and it could be occurring anywhere in baby's body. in the liver, heart, pancreas, lungs etc. i expressed my shock at the size of the hygroma and asked the tech if she thought it was huge as well, to which she replied, "it's pretty big."  she finished up doing what she needed to and went to get the dr. hwang (who was amazingly gentle and sweet). he came in and looked at the baby himself on the ultrasound machine.  we learned from him that the cystic hygroma is septated, which means that there are pockets within it. this means the increase for chromosomal error goes up by 70 percent. dr. hwang also said two things that ring in our ears every day: "your baby is sick" and "this is very concerning."  i think jeff and i were in such shock that it was still there we forgot most of our questions for him, and believe me, we have a bajillion of them.  we talked a bit about an amniocentesis or a cvs as possibilities for discovering chromosome anomalies, and i had prepared for maybe having an amnio done, but he would have wanted to do a cvs since i was too early for the other.  i hadn't done much researching on a cvs procedure and what is all involved, but i knew it was just as invasive as an amniocentesis. i was feeling anxious about it all until dr. hwang told us about a brand spanking new way of going about getting the same results as the other two options.  neither jeff nor i can remember what it's called, but all they had to do was take my blood and they can somehow figure out baby's chromosomes and any errors.  a blessing from god right there.

after concluding with dr. hwang, having the overall feeling of 'this is not going to turn out well,' we headed into a room to have my blood drawn and then we were able to head home.  another ultrasound and fetal echocardiogram are scheduled in a month, and in two weeks i head to mcfarland clinic for a routine appointment- but mainly to see if baby's heart is still beating.  i'll be seen every two weeks, with an ultrasound done every month until one of two things happen. either i make it to term and have this baby or i don't. we are trying to prepare for the latter...if you can even prepare for something like that.

i don't mean to sound morbid or pessimistic or as though i don't think god can perform a miracle, but this is a borderline severe case, according to our doctor.  hydrops alone carries the risk of miscarriage between 60-90%.  this baby could easily go into heart failure from trying to feed the fluid around it's body and the hygroma on top of supplying enough to each organ for normal growth.   the odds are stacked up against our little peanut. a septated cystic hygroma only happens in about 1 in 285. that's less than one percent.  we already know from the cystic hygroma that baby's lymphatic system has an error in it, otherwise fluid would not be backing up. we're not sure how baby's heart is holding up at this point, but it was strong at our appointment.

i'm sure you are wondering how i'm doing. heart broken, distracted, and constant worrying are all a part of daily life.  i've done plenty of crying and continue to have my moments from time to time.  it's a difficult task grieving this news and keeping life normal for our boys.  simply put, life is overwhelming.  it's hard to find motivation to do simple household tasks. the rest of this pregnancy, however long it lasts, will go by much slower. anticipating every appointment, hoping and praying for a heart to keep beating. for our baby to keep fighting.  we appreciate all of you who continue to lift us up in prayer.

unexpected news.

to process everything that has happened since last monday seems daunting.  all the unknowns that come with the unexpected diagnosis of our unborn baby is overwhelming. google can either be your worst enemy or best friend in this kind of situation.

there is something called cystic hygroma. i've never heard of it until now, never read so much on it until now and never worried about the baby in my belly more until now.  when i envision this little person, i picture the perfection of my boys at their births. their smooth pink skin, perfect wrinkly feet, long lean bodies (that quickly plumped all the way up by two months), their beautiful cries,and alert round eyes. healthy.  but i now know that this sweet thing growing inside of me will be different. he or she will probably not look like my boys did. he or she will most likely have lots of medical needs.  a growth on his or her neck could mean  Down syndrome or Turner syndrome, heart defects, surgery after birth, and, i'm sure, a whole host of other things we're unaware of.  we're not sure the extent of things yet. it could even dissolve by twenty weeks. it's a small glimmer of hope, but hope nonetheless.

you never think something like this will happen to you. especially after losing a baby not long before.  sure you hear about it happening to other people, even those close to you. but not you. it's a lot to take in in a short amount of time.

two weeks ago we had our first prenatal appointment.  our midwife couldn't detect a heartbeat with her doppler so we had a quick ultrasound which confirmed that, yes, there is a life inside of me.  the doctor who did the ultrasound (not a tech) thought he noticed some fluid behind the neck of the baby so he wanted us to have a legit u/s done the next monday.  during that appointment it was confirmed that baby had a cystic hygroma on the back of it's neck and also a little fluid around the ribcage. we are headed to the specialists in des moines this wednesday for a more detailed ultrasound.  and that's where we're at.  prayers are greatly coveted.

in other news. roman really wants baby to be a sister (not a girl, a sister). he's already in love with it.  when we told him it might be another brother he said, 'i don't want another brother.' which makes me giggle. it seems as though he just wants a little sister to love and protect. so sweet that boy is.  love him.

dreaming of february

we are thrilled!!

the fourth.

we had a fun fourth! the day began with free pancakes and fun downtown, followed by the parade where we met spiderman (!), then home for naps, and an evening at mimi's house where viggo practiced his cartwheels and roman raced through the sprinkler. we were too tired to stay up for fireworks. even forgot to do sparklers. oh well. next year!