20-28 weeks

I can't believe how much time has passed since the last time I posted something.  I appreciate all the kind and thoughtful notes on Facebook, text messages, and phone calls.  I can't tell you how many times I have reread the messages and looked up verses in the bible to just get through a tough day.  I want you to know that they all mean something to us.

The past 8 weeks have been pretty blurry.  We haven't found out anything new, but it has been an emotional roller coaster.  Around 25 weeks we decided to get a second opinion and met with another fantastic doctor who is at the Women's Hospital.  Dr. B (who is our new doctor) saw the same things we have heard from everyone else.  He was also concerned about two bones measuring different in one leg measuring different.  He also could not see if the baby had fingers on each hand.  Now hearing this news can make anyone's heart drop, but that doesn't mean anything for sure.  He did one scan on a particular day that the baby may have just decided to leave her hands closed.  Dr. B was very open with us about some questions and gave us some great answers and also inspiration.  I cried at this appointment as usual.  I wanted him to disagree with everything we have heard.  But no, nothing had changed.  He continued to talk and I went blank again.  I have been doing this a lot lately where people are talking but all I hear is silence.  Then, the room becomes fuzzy and I begin to cry.  At the time, we  didn't know what to pray for, can we pray for a miracle, is it even possible?  Dr. B is clearly not a pastor but he did give us some comforting words and advice.

In the end, we could have stuck with Dr. S at the Creighton Medical Center but for personal reasons we chose Dr. B.  I will be forever grateful for all the support and time from Dr. S.  He truly is an amazing doctor and Cole and I feel blessed to have had the opportunity to meet with him.

Now besides all this medical stuff Cole and I have gone through so much together.  We have definitely become closer and our marriage has become so much stronger.  Gosh, I never thought I would be able to say that.  We haven't even hit the peak of the mountain we are climbing but it is absolutely unreal where God can take you.  I am beginning to realize how it is so important to talk to each other.  The clam up method and saying everything is "fine" doesn't work.  My parents have watched Halle numerous times so that Cole and I can grab dinner together to just talk.  I don't know what we would do without them.

I will say that I dread the times I am alone.  The car rides to work have been extremely tough.  I must do my best thinking then.  Most days I pull into the school parking lot with tears streaming down my face.  I am so scared.  I feel so isolated while driving that my heart just breaks into pieces.  Dropping Halle off makes me wonder if I will have another little one to drop off in the fall.  Then, as I pass the Women's Hospital I wonder what will happen in a few months when I am there for a second time.

I am so scared for what lies ahead.  This is pregnancy #5... will there be more after this?  Can we even handle this one?  I feel like I have been "pregnant" for more than half of our marriage.  To make my thoughts a little more complex this is the easiest part of pregnancy #5.  I am currently 28 weeks pregnant and have an incredible daughter but I haven't even begun to know what pain lies ahead.  Will we be in the hospital for months or will we plan a funeral?  I'm so scared to know what either of these will feel like.  I don't know how I will be able to put her in a casket if that day comes.  I have dreams about it all the time.  Then, I think about what cognitive problems the baby may have.  I am terrified of this.  If she does live, will she ever be able to kick a ball?  Will she be able to attend school and read to her teacher?  Will she have that first date? Will she become incredibly opinionated and take on the world?  I know I need to be patient and wait but it can be difficult some days.  I am trying to remember to take each moment, each day, one at a time.

20 Weeks- Children's Hospital

Lately Cole and I have appointments every other week between 3 doctors.  I tried to summarize majority of these appointments.  Otherwise this blog could turn into a novel.  My doctors would say a textbook.  We all probably don't have time for that. :)

After the news we heard from Dr. S he recommended that we go see a heart specialist at Children's Hospital.  Now that was a very intimidating and scary appointment.  I'll never forget my emotions as I drove to the hospital.  I knew we were going to find out some major news.  I am not sure Cole knew exactly what we were in for.  Since our 9 week appointment, I felt like something was going to be majorly wrong with the heart.

The check-in progress was a little long.  We ended up getting the run around and went to a couple different offices.  Then, we finally were in the right spot and it was time to sit and wait.  There was this calming "water feature" where we were sitting that definitely helped me relax.  Children's Hospital planned this one out well.  During this time, I prayed but I also knew reality would soon hit.  I am a believer and I know God is in control but I felt like we were going to hear some intense news.  Good or bad we were not turning back and we were going to be ok.  God chose us and I had to keep that in the front of my mind.  We can do this.  We have each other and we have our little Halle bear. (Rover of course too.)  I wouldn't trade them for the world.

When we finally got back to the room with Dr. D and his nurse it felt extremely long.  We sat in the ultrasound room for about one hour.  At first we were excited when we sat down... there was a TV in the room.  How thoughtful of them. :)  Now those of you that know me pretty well, know I have a ton of favorite shows.  (Cole and my dad would say they are worthless, I beg to differ.)  But, there isn't a show on this earth that could entertain your mind when the doctor is scanning your stomach.  When the doctor finished he took us to a conference room.  We waited again for several minutes... I was shaking on the inside.  Dr. D came in with the Fetal Care Coordinator and the Pediatric Cardiology Speciality Nurse... this was not going to be good. Dr. D is probably one of the calmest doctors I have ever met.  He drew a picture of a normal heart and then the picture of our little girl's heart.  I wanted to cry but I couldn't.  If I started, there is no way the doctor could have calmed me down.  I kept probing him with questions and waited for him to tell me the worst case scenario.  In fact I became angry on the inside, I just wanted him to say it... death.  I know that sounds extremely negative but I didn't want to be optimistic.  I wanted the facts and to face this head on.

Here are the facts:
Our little girl needs 3 major surgeries if she makes it through birth.  Now we are not even talking about the bone and chromosome problem, just heart.

Surgeries that would need to happen:
1st one as a newborn- Norwood operation
2nd at about 2-4 months- Glenn
3rd at 2-4 years- Fontan

The nurses and doctor said I was handling the news very well.  Haha.  Well Cole knows, I'm like a locked box until you find the key to open it, and when you do, watch out.  Cole and I ended up driving together to see Dr. K after this appointment.  Again, he is the most wonderful man.  His day ended but he waited to see us.  The nurse of course saw us first.  She took my weight first.  Silly women that was the least of my worries.  She then asked me to list all the medicine I was currently taking. (A normal question).  I looked at her and said, "You have about 3 minutes before I lose it, I need to see Dr. K now."  Now she is very sweet but this was not the time to be asking about all my pills and shots.
This may be hard to believe but this appointment was probably the best way to end the night.  Dr. K just sat there and listened to us.  I think I even laughed a little, about what, I have no clue.

The drive home from this appointment was terrible.  Cole and I drove home separately in our cars.  I managed to text my mom, "Please bring Halle, it is pretty bad news."  I then just cried.  I could barely see the road.  I remember the music was blaring and all I could picture was me holding onto our little baby.  I didn't want God to take her away from me, it wasn't fair.  She is too little.  I then thought of Halle.  She amazes us every single day.  Would I have that chance with this baby?  I've never been so scared.  No one could protect me.  I pulled over as I watched cars drive past me.  Time seemed to move so slow in those moments.  I thought about my life and everything I have been through.  Then, I asked that same burning question... WHY?