And through the snow storm we go....

I received a call from Seattle Children's hospital prior to our appointment on January 17th, asking us if we are still going to be able to make it to our appointment that Tuesday. The lady said there was supposed to be a bad snow storm.  I was unaware we were even going to have a snow storm and laughed at the person on the phone knowing I must be really out of touch with with is happening in the world or even our backyard lately.  I assured the receptionist that Jason and I would make it to our appointment in Seattle no matter how bad the conditions are and that we have a great car to get us through it.  Monday night, Jason and I loaded into the car after work and we ventured down the I-5 in a complete snow storm.  I was thankful Jason was driving because 1) we would get there sooner because he is not scared to drive in the snow and has lots of experience 2) He doesn't get sick or vertigo or lose track of where he is driving when the snow is falling so hard you can barely see where you are going like I would be  3) We would get to were we needed to sooner or later.  I found out that Jason does drive a little faster in the snow that I would prefer, but knew that I could still trust him with getting us there.  We arrived in North Bend where we were staying with Jason's friends, in one piece.  We stayed up far to late for my pregnant self and slipped under the covers at 1130 pm.  This made me nervous knowing we needed to get up at 6:30 am to leave enough time to get to our appointment in Seattle the following day.  I had a hard time falling asleep thinking of Esther and hoping everything was going to be okay.  I woke up at least 20 times that night and early morning wondering if it was time to get up and go to the dreadful appointment.  I was up around 5 am just laying there waiting for the alarm to go off.  Jason and I got up and noticed there wasn't as much snow as we anticipated but made our way out the door early so we could at least stop somewhere close to have breakfast together.  North Bend area was the worst snow that we hit on our drive.  Jason doesn't like to be behind drivers going 25-35 mph, so he decided to go in the fast lane to pass everyone while it was covered in snow.  I almost lost my stomach when we started fishtailing going almost 50 mph.  The snow had sucked us in and we were heading towards the small ditch on the side of the freeway.  It took us about 5 or so fishtales  to gain control of the car again.  All I could do is clinch the door and say "Lord not now!" Jason and I knew we needed to play it more safe in getting to the appointment.  I knew he wasn't trying to show off or be macho, we just needed to play it safe and get us there safely.

We made it to our appointment with an hour to spare.  I sat nervous as ever in the waiting room not only from the drive we just had but the fear of what else they may find in Esther ultrasounds.  We got to go into our first appointment early.  We were comforted by our first lady doing our ultrasound.  She was so sweet and we had lots to talk about.  She was checking Esther heart closely with a fetal echo ultrasound.  We could see in the ultrasound that stomach was right next to the heart.  But, we were comforted once again that there is nothing wrong with Esther heart and everything looks normal.

Next we went into a Fetal ultrasound.  The results of that were discussed later with a high risk obstetrician named Dr. Jolley.  We were excited to hear that Esther no longer has a club left foot.  Either God completely healed it, (which we believe) or it was diagnosed wrong the last time we had a high tech ultrasound.  She stated that it appears Esther has a large CDH hole or area where the diaphragm did not form.  That not only the stomach and bowel are in her chest, but also part of the left kidney and part of the liver are up there also.  I was discouraged to hear that the liver was partly up there knowing from research it makes this case more severe.  Sure enough that was what Dr Jolley told us, that her case of CDH is more severe.  I instantly got a pit in my stomach and wanted to break down crying.  Up to this point I have held it together, but in that instant, I wanted to run out the doors and let me self cry out in pain and saddness to the Lord.  I wanted to have a milder case at least.  I began crying as I talked to the doctor further for more clarification.  But Jason and I held it together through the tears.  I hated being in that moment.  The doctor stressed that I needed to protect the baby in every way and that I could not go running anymore and needed to just stick to walking and less pounding for the baby.  That we really needed to take care of the placenta so nothing makes the baby come early or effect the nutrients Esther is receiving.  Along with that, she wanted to make sure I am not out on the floor with my detention kids in case I was hit by any of them.  She also stated that Esther is normal for her fetal growth exam and is in the 22nd percentile.
 
Jason and I waited about an hour for our next appointment which was with one of the pediatric surgeons named Dr Patrick Javid.  He made us feel better about the outcome with Esther.  I asked if her survival rate looks more dim being that her liver and kidney were slightly up.  He stated that the success rate is still hard to predict and that he believes her survival rate is still about 80%.  He also stated that the size of defect of the diaphragm doesn't always correlate with its severity and that we wont know how large it is until we go in for surgery.  He stated that pulmonary hypertension is one of the main concerns with CDH babies.  We asked more questions about what we should expect for her.  Dr Javid said he would expect Esther to have to wait till about 1 week to have her surgery to push the parts down and patch up the hole.  He said these babies are usually in the NICU for 2 weeks while we wait for stabilization initially and then the surgery and then stabilization afterwards.  He also states that these babies are usually in the hospital from 4-8 weeks and some babies go home on oxygen and or feeding tubes.  One great thing about Seattle is that the recurrence of a hernia due to the patch is low.  Jason and I were also comforted in knowing that we may be able to hold Esther right after birth for a quick picture.  They said we should expect to able to touch her face and feet and talk to her while she is in the NICU without the fear of too much stimulation for her.  Also, that we could hold her sooner than we had anticipated once she is more stable.  They continued to remind us to get people on board to support us through this process now and after the baby is born.  We will be setting up ways for you at home to help us.  One of those ways is by setting up a site that you can: 1) send gift cards for local grocery stores or restaurants near by the hospital 2) send gas cards knowing Jason could be driving back and forth from work and home and back to the hospital frequently 3) visiting us in the hospital (especially when Jason is working and I am by myself) 4) delivering us small meals for the day when visiting us in the hospital (there is no storage or fridge space to store much food in) 5) If you live near by the hospital having food stored at your house and bringing that food in from time to time for us 6) just visiting.  There will be times it is hard for me to even leave the room to go to the bathroom or take a shower knowing Esther would be alone during that time. Someone to pray with us and comfort us through the up's and downs.  Or to allow us to take a nap while you wait it in room with Esther.  7) anything else you can be creative with.  They wanted to stress the importance of how important it is to have you in our lives reading this and praying for us.  They said we can guarantee you will feel lonely and ready to get out of here after a few weeks and its important to have people keep you motivated and encouraged and loved during this difficult time.  Thanks for continuing to support us in this journey.

Jason and I made it home through yet another threat of snow storm on our way home from the appointment.  We were going to stay another night in North Bend with our friends but ended up eating dinner there and heading home.  The next day, Jason and I had a day off together (which only happens once every two weeks) and sat and caught up on all our TV shows and movies.  We felt instantly encouraged and at peace again with the Lord and the things he has in store for us our our sweet little Esther.

Rhonda