Monday, February 13, 2012

Our Beautiful Baby Boy

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I wasn’t sure if I was going to share this, on this blog, especially since I haven’t once mentioned I was pregnant.  But whenever I have been reading a blog and then all of a sudden they just disappear I always wonder what happened.  If life threw them a little curve ball, or maybe they just got too busy.  Well life did throw us a little curve ball on February 3rd.  

I was looking forward to last Friday for weeks.   It was my birthday after all and my husband 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.  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 syndrome (which we already know our baby doesn’t have because he is a boy) 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.  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 friends & families who aren’t here near us but offer very kind and comforting words.  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 and they were all normal!  That of course doesn’t rule out a lot of other chromosomal problems, but a least it’s something positive.

As for the blog as you can imagine, I don’t exactly feel up to it right now.  I have been sewing a lot, I call it sewing therapy.  It actually helps me get through some hard parts of the day.  Because I’m a good enough sewer that the kids can actually wear the stuff I produce, but I’m not that good that I don’t actually have to think about it a little and having something else to think about really helps.  

- Jaime

13 comments:

Quiltstory said...

My thoughts and prayers are with you. You shared some inspiring thoughts and words, you impress me a lot. I am so happy you have so many wonderful people around you to help lift you up. Your blog will always be here, for now you be completely selfish in your use of it, only post when you need to and don't give one thought to your readers, we'll all be here :) Hugs.

The Lawrences said...

so sorry you are going through this! Glad the initial results are good. Praying for you, the baby and your family!

Tonii said...

What a horrendous thing to be dealing with! You and your sweet baby boy will be in our prayers, I hope you can feel some peace and comfort at this scary time.

Andy said...

My thoughts are with you and your family. Just take it one day at a time, and when that feels like too much, one breath at a time. *HUGS and LOVE*

Amy said...

I'm sorry for your struggle at this time. Thank you for sharing that scripture and song. It really is true that we are not in this journey alone. I always like to remember that we are not given more than we can handle WITH HELP from others and a loving Savior. Good luck.

Alisa said...

So sorry for what you are going through. I'm happy that you are finding your refuge in God who knows your little son intimately, even more that drs.! Keep trusting in Him!

Tamara said...

I just want to let you know that I am praying for you and your family. The Scripture and song you shared are very comforting. Blessings to you!

Kate H.(www.sprinkletherapy.blogspot.com) said...

Praying that the Lord takes all of the troubles away and restores them with his peace that passes understanding.

<3

Lifein1000sqft said...

I will pray for your family and your baby boy.

Shanna said...

Sending hugs your way and really don't know what else to say other then I am thinking of you. You will be in my thoughts.

Sarah said...

I am so sorry! Nothing is so scary as potential problems with a child. Just know that a world of miracles can occur for your little boy! Think positively and pray, pray, pray!

AndiWinslow said...

Big hugs to you and your family. I will keep you in my thoughts and prayers. andi

Shannon Smart said...

My heart aches for you. I'm praying for peace for you and healing for your baby.