01/25 (ii)

Since Friday things have been up-and-down. We have had a couple really hard days, a couple okay days, and a couple days of being numb, in shock, I think. This is not what anyone expects going in for that ultrasound appt. But it is our reality, our new life now.
Obviously we have been talking with the kids about the baby, letting them know things as we do. They need to be prepared too.
This week they have been able to go to school. I think they're having good days. As normal as we can make things as we adjust. It's been rough on Josh and I to have to be apart. We need to be together for this, to get through this. His boss (principal) had all ready been in contact with the union and division right away after Josh talked to him last week, getting things prepared for Josh to take leave. I am so thankful that he is being understanding in this. Yesterday we picked up a note for him, for the leave. We are trying to make it through this week - it's exam week for his kids and will be the end of the semester, it makes for better transition timing for them - then he will start his medical/stress leave and we will go from there.
We are continuing to pray (constantly) for our little girl. We covet your prayers.

(editing to add)
I forgot to mention it above, but we have another appt with fetal assessment in the city on Feb 3rd. We'll be getting more ultrasounds to check on baby, and we'll also be doing an amniocentesis to get a full look at her chromosomes. It is scary to think about (so I'm trying not to) but will be the best way to know what we're dealing with.

And, Josh texted me from school this morning, about 9:30, saying that he was on his way home. Apparently the Dr had put "starting tomorrow" in his note (dated yesterday). Not a big deal, just means we don't have to make it through this week apart.


This is not an easy thing to post. Our lives have been turned upside down. We are adjusting, slowly.
we had our routine 20wk u/s (ultrasound) on wednesday. i was 20wk1d. things seemed... all right during the u/s (as much as i knew, they tell you *nothing* at radiology), but about an hour later josh got a call at home (home with levi, i was still in town running a few errands) from our dr's office asking me to come in asap.
i went in right away. dr showed me the u/s report (and gave me a copy to bring home). it was really bad news.

the babymeasured small - 18wk4d average, abdomen smallest at 17wk, other measurements around 19wk. thorax and abdomen small. ribs short. heart on the wrong side (right side of body). kidneys and bladder present. limbs in a strange position and no movement of any through the (hour+ long) u/s.
the radiologist's impression was that baby has short-rib thoracic dysplasia, dextrocardia, absent limb movement. he recommended going to fetal assessment in the city.
while the heart issue may or may not be bad, with the other things present it was not looking good. thoracic dysplasia, no matter how you look at it, is lethal. almost all babies will die in utero. those who are born alive will not be able to breathe. ventilation doesn't help, at least not for long, as the lungs don't develop.
we were broken. without hope. i think in a way we started grieving right then, started saying goodbye to this wee babe.

wednesday night was horrible for us. many tears. just clinging to each other. trying to make it through caring for the older kids. calling our parents to tell them the news, getting prayers sent up all over the country for our little baby.
thursday we got a call to set up an appt for that afternoon at 3pm (which there was no way we could make, needing to coordinate care for the kids), we got an appt for friday at 2pm. our friend said she would stay home to watch our kids, in fact 3 of her own kids stayed home from school to stay with our kids.

we didn't talk much at all from wednesday to our appt on friday. felt like walking through water to move, do anything. when not trying to get something done we just clung to each other on the couch, silent but together. we didn't even talk on the way to the city (3hrs). what was there to say. i'm sure josh was praying, i just kept praying to God, talking to the baby, repeating "miracle. we need a miracle." over and over.
i knew there was something going on with this baby. i knew there was something wrong. but i prayed just for some hope.

got to the clinic - i was okay until we sat down to wait, there were other pregnant moms there (obviously there would be) and i just started to break down. the receptionist put her arm around me and said she would give us a private room. a nurse and the geneticist came in to sit with us and talk for a bit. then we moved rooms for more u/s.
first thing we saw, and it's very obvious even to us, is that there is definitely something wrong with bug's limbs. the legs are bent at the hips but very straight at the knees, ankles crossed. the arms are held across the chest - think like hugging yourself. the limbs do not move.
the nurse, and then a dr, did more u/s, more measurements. yes, baby is measuring small... though the measurements were not as small as on wednesday.
the heart is in the right place - left side of body, fully formed and working perfectly!! kidneys and bladder look good. stomach is present (wasn't mentioned at all in wed's report), though it may be on the right side of the body - but it may not be and even if it is it isn't our main concern.
we asked specifically about the things in the first report, as well as the other markers we found (in a report online) about thoracic dysplasia.
the dr and the geneticist both said THEY SAW NOTHING. nothing that stood out to them, nothing that looked off or wrong to them, nothing that would make them start looking for anything there. NOTHING. the ribs look fine, the chest and abdomen measurements are small... but not as small as the 1st u/s, no cleft palate or lip, brain is fully developed.


now we are on the hunt to find the "why" to explain her limb issues. we need to figure out what is causing it so that we can best prepare for birth and what may need to happen right away.
the geneticist started out thinking (based on the report from here) it was a bone issue. but neither of them saw anything wrong with the bones at all. now we are looking at joint or muscle issues.
as we were going through questions, my hand troubles came up - i have had kinda weak hands for a while, cramping up while writing or say using a can opener. i didn't know it could mean anything. but i may have grip myo dystrophy. if i do, i could have passed this to the baby - who obviously has a very severe case, if this is what's going on.
josh and i had blood drawn for a chromosome workup. i had more blood taken for dna - looking for this dystrophy. we will be doing an amniocentesis to get the baby's genetic workup so we can narrow the cause down.

although we never have before, we asked them to tell us gender. we need to know. we need to prepare.
they are pretty sure our baby is a little girl. ♥

her prognosis is not good. we know this. but there's a really good chance she will survive to be born. we will get some time with our baby girl! it may not be long, but we have hope that we will meet her.
if i have this condition and that's what's causing her troubles, she won't be able to breathe when born because her muscles will be too weak. she will be put on a ventilator right away. this poses it's own risks.
if it is a joint issue instead of muscle, it may be a better prognosis.

i know the geneticist is worried that we don't "get it". that we are not worried anymore, that we think everything is a-ok.
we don't.
we know there is something wrong with this baby. we know she may not survive long. we are not even thinking about this baby even coming home with us right now.
but he gave us the hope of time with our baby. and that is everything we prayed for. how can we not be overjoyed.


pictures - 01/09

Pictures finally!
Dec 1 - Levi
watching tv

whip cream!

Dec 7 - Levi helping with dishes

Dec 31 - Happy New Year!
We had fondue for dessert
watched a movie, with chips and treats.
then the kids popped crackers and "toasted" the new year
(at 10pm... with sparkling apple juice!)

I still need to get the kids' Christmas pictures, and shots from Christmas Eve and morning up!
But in the meantime there are videos from the Christmas Concert - on Dec 21st. Enjoy!


Merry Christmas & Happy New Year - 01/06

Welcome to 2012! Sorry it's been such a long time between posts - things got very busy for us through December... haven't slowed down much yet, really. I have a bunch of new pictures to post and some videos from the Christmas Concert. I'll try to get them uploaded in the next few days and will post again when I do.
For now we're all well and enjoying the break. Unfortunately everyone goes back to school and work on Monday. I'm not sure if that will slow us down or not!