Hope and discouragement

We had our first post hospital ultrasound today.    

The positive thing is that both babies still have heartbeats.  Tears were just pouring down my face as I realized they were both still alive.  They are still moving and waving and jumping all over the screen.  I think they are BOTH beautiful.  They look perfect to me.  Because I have an anterior placenta, I cannot feel the babies moving as I would like to.  Therefore, I really had no idea if they would still be moving around.  

Our maternal fetal medicine (MFM) specialist is not hiding his amazement that we still have heartbeats.  At each ultrasound, he seems to be expecting our babies not to be alive.  I don't think he's being negative.  I think he's being realistic and that's just the situation we are in.  

I'll start first with Baby A.  Baby A is clearly the bigger twin and she's even grown a lot since we saw her last week.  As most of her severe health problems were seen in her heart, we did not get an accurate update on her progress as we will have to wait 3-4 more weeks for her fetal echocardiogram.  Changes in the heart happen over a long period of time and we are giving her more time to heal before being able to assess her heart situation again.  Last week she was in heart failure and I'm just praying that healing has begun.  All of her other organs appeared healthy.  She is a very active baby and I loved seeing her wave her hands and arms around as if she was waving right to us.  

Now to our sweet Baby B.  Baby B is still very small but had a strong heartbeat and improved movement.  You have to understand that when I say improved, it doesn't mean good.  It just means better.  They were able to clearly see a bladder for her, which is improvement from last week when they could not see one at all.  However, she still has significant blood flow problems.  Her blood flow had not improved at all and our MFM specialist called it "status quo."  I'm glad it has not gotten worse (I'm not sure how much worse it could get...) but we were all certainly hoping to see positive changes in blood flow and there are none.  The MFM told us we need to begin asking our surgeon if he indeed was able to cut ALL of the connections between the babies because we need to prepare for the possibility of Baby B passing away and try to save Baby A.  He described the situation as "touch and go" for the next few weeks.  

You see, when twins have this twin to twin transfusion syndrome, the "donor" baby, (I hate using these medical terms but it might help you understand, just for this conversation) our Baby B, pushes all the blood flow to the "recipient" baby, our Baby A.  If the donor baby passes away, the blood flow is then sucked back into that baby and the recipient baby has a stroke and significant brain damage.  Essentially, you just don't want any transfusion of any kind between the babies.  They should be self sufficient with their own connections to the placenta.  Once the laser surgery is done, all the connecting blood vessels between the babies should be gone.  This is obviously a shock to the babies' systems who have become used to either supporting the other baby or dealing with excess blood.  However, if post surgery, the donor baby passes away, the recipient baby will not be in further danger of brain damage.  

Our surgeon told us last week that he was able to cut 16 blood vessels between the babies and he thought he was able to get them all.  We will be verifying next week that that was all there was.  There is still a 3% chance of reoccurence of blood vessels between the babies, in which case they can not perform any more surgery.  There will be nothing left to do.  We certainly hope this will not be our situation.  I feel fairly confident the surgeon was able to separate the babies, but again, we will be verifying that.  

We have not given up on Baby B and I will not give up on her.  Ever.  She is clearly a fighter to have made it this far.  If our girls have been fighting so hard to make it this far, we will continue fighting for them as well.  We will do whatever we can do.  

As you can imagine, I'm very very discouraged.  I knew not to be expecting a "normal" or good ultrasound, but I had hoped to see TWO healthier babies.  Actually, I'm not sure what I was expecting to see.  I've tried to be so strong since we left the hospital.  I've tried to focus on the positive.  It's so very hard to stay positive.  I've prayed and prayed over my little ones.  I've told everyone "I'm doing ok."  But here's the truth.  I'm having trouble sleeping because I have so much anxiety.  I feel like I'm still dealing with the stress of surgery last week.  And with the stress of all of this.  Every time I close my eyes to sleep, I feel like I remember a portion of the surgery (cause remember, I was awake during it) or a specific disappointing phrase we heard from the doctor or remembering how low our percentages are of being able to deliver two babies.  I wish I could turn off my brain for just a little bit.  But it's kind of hard to forget you are pregnant, even for a moment.  It's all consuming as any mom knows.  I think I'm in mourning for a healthy pregnancy and healthy babies.  I've been looking at Avery this week and just thanking God for her.  I've always always been thankful for her but I now fully understand what a blessing it is to have a healthy pregnancy and be able to even bring a child into this world.  That in itself is an incredible miracle.  

So I'm letting myself fall apart today.  I'm hopeful but discouraged at the same time.  Two very different emotions but I'm feeling them at the same time.  Today, I'm letting myself be sad and angry.  Tomorrow, I will start fresh again and continue on the fight for my precious baby girls.  

Thank you again for all your prayers.  Please keep praying.