Tuesday, February 21, 2012

Our Beautiful Baby Boy --Update



Today we got the last of the test back from the amnio that we did almost two weeks ago.  I can’t believe it’s only been 2 1/2 weeks since we found out about our babies struggles, it feels like months. Well, so far everything that they have tested for has come back normal.  From his chromosomes to all the viruses, everything looks fine.  But obviously everything isn’t fine, or he wouldn’t be having such serious problems.   Right now we don’t even have a plan for what to do next, the people that we are working with at the U of W were either out of the office today or to busy to contact.  But another genetic counselor talked to another doctor and asked them what they would do.  The answer- another ultrasound sometime next week, probably on Wednesday, then hopefully some kind of planning session between the doctors and us about what we can do going forward.  They are also going to tell the Lab to keep his cells that they collected from the amniotic fluid alive incase the doctor we are working with wants to test for something else.   We also are going to have my care moved to Seattle, meaning that things are going to get a lot busier around here as Seattle is a 2 hour drive one way, and I’m not sure as of yet how often I will have to go down there.  But we are still very hopeful for some kind of treatment plan, or something. 

Friday, February 10, 2012

One tiny itty bitty bit of good news in a sea of bad

The U of W called last night at around 5 p.m and had the results of our quick amnio or fish results. They all came back normal!  She did say that there was a small chance for false negative and it also doesn’t rule out all of the other chromosomal abnormalities, we still have to wait for the longer tests to get a full map of his chromosomes.  But right now we’ll take any good news we can get. 

Thursday, February 9, 2012

Our Beautiful Baby Boy



I was looking forward to last Friday for weeks.   It was my birthday after all and Cameron had the day off, but mostly I was looking forward to seeing our baby for the first time.  I had scheduled my 20 week ultrasound on my birthday and was excited to put the worry I had, had all pregnancy about the baby not being okay behind me. I was worried about the health of the baby due to having surgery around week 9-10.  Unfortunately that day wasn’t what I dreamed it would be.  There wasn’t any happy news.  We have had enough kids and enough ultrasounds to realize that things were not like they normally are.  The ultrasound lady was really quiet, she kept leaving the room and would be gone for a long time.  She kept measuring the chest, and head over and over, putting arrows pointing at different spots especially on the head.  We had asked not to find out the sex of the baby but with her concern over getting all the pictures she needed for the doctor she showed us his boy parts at least 3 times.  Now I’m not a radiologist or anything but I can recognize a penis when I see one, and I thought that, that was really weird that we asked her to keep it secret and she didn’t seem to be paying attention to what she was showing us.  I really got worried when I saw his abdomen, even to my untrained eye I could tell things didn’t look right.  I of course didn’t know what it was, and I was still in a state of denial, or maybe hoping I was just wrong and being paranoid.  After the scan was over we met the doctor in an office, and was told that things didn’t look good for our baby.  That he had pleural effusions.  (He never told us the name of our baby’s condition) That he had fluid in his abdomen and in his skin, and that we needed to go to Seattle to get some more information and tests done. He then told us some of the things that could cause his problems but not much else.  Of course we were distraught and we didn’t even know what that would mean for our baby or really what we were even dealing with.  I mostly just cried, and cried and cried and that is pretty much how I spent the weekend.  Monday morning the U of W called and had gotten us appointments for Wednesday.  We had appointments with a genetic counselor, ultrasound and a consult with a perinatologist.  On Tuesday I finally got up the courage to Google our baby’s symptoms, I just needed to know what we were dealing with.  I found what I was looking for, what our baby has is called Non-Immune Hydrops Fetalis. All that means is that the baby has fluid in his body in more than one place.  (I wouldn’t recommend googling it, it’s pretty depressing )   It was good and bad thing to find out.  I learned that the prognosis for a baby that has hydrops is poor.  That more often than not it leads to stillbirth.  That of course was horrid, and quite frankly still is, it’s hard to know that, that is the likely outcome.  Especially as we look at him on ultrasound.  He looks so normal, and is so active, his heart beat is strong and healthy.  I also found out that there are a lot of things that cause this problem and what is causing it has a big impact on whether or not they can treat the baby.  I won’t go into all of that because there is a lot and really it will only matter to us what our baby has.  The two main ones that they are currently looking at are Chromosomal problems and Viruses.  We are hoping for a virus, and know it sounds strange but they can do more for our son if a virus is causing the problem.  And I’ll keep the blog updated as we find out more information.  So on Wednesday, we went to all our appointments and really didn’t find anything out that we didn’t already know.  We did get confirmation that our baby is suffering from Non-Immune Hydrops Fetalis, and he has a lot of fluid in his abdomen, lungs and skin.  But finding out what is causing it will take time, and there is still a chance that they will never figure it out.   They didn’t have an amino scheduled for us that day, but luckily we talked them into doing one before we left that night.  Without the amnio it’s harder to figure out what’s going on.  We were lucky to get it done too, because by then it was around 6:00 pm and there weren’t a lot of people still at work.  Part of the fluid they took will go for what they call a fish test, it’s a quick test that screens for the more common chromosomal problems, down syndrome, trisomy 18, trisomy 13,  & Turners disease (which we already know our baby doesn’t have because he is a boy)  We'll have quick amnio tests back probably by Friday. So that’s were we stand today.  Knowing our baby is fighting for his life, and there isn’t much we can do but pray and put his and our lives in the hands of our Heavenly Father.  It’s going to be a long road, but we’re on it and hopefully are headed toward some kind of answers as soon as possible.   People tell you to take it one day at a time, but right now it’s so raw, that I try and live moment to moment.  Some moments are better than others, and doing things like talking about it, or blogging about it will usually make for lots and lots of crying later.  I found this today and it has really, really helped.   We have great friends here that have done so much for us, watching kids, bringing dinner and so many other things I can’t even begin to list them all.  Plus of course our wonderful families who aren’t here near us but offer very kind and comforting words & Cameron and I have both received priesthood blessings that were also very comforting.  I just keep telling myself to remember the scripture from

Psalm 46 “Be still and know that I am God”.  Also the song “Be Still My Soul”  is a great comfort to me, though I usually end up in a blubbering heap. 

1. Be still, my soul; the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.
Be still, my soul; thy best, thy heavenly, Friend
Through thorny ways leads to a joyful end.

   Update * we got our quick test back right here