Rhonda and Jason

Rhonda and Jason
Our Wedding Day

Monday, January 23, 2012

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.


Wednesday, January 11, 2012

Jason here again.  Time for a little update on how things are going with the dad.  Like Rhonda posted, getting the results of the amniocentesis was a major relief.  It is amazing how no news can be the greatest news sometimes; Praise God!
I have been focusing on allowing God to power me, literally.  Our tendency as men and women in a fallen world is to sin and disobey God.  So with news like "CDH", I just want to mope around and feel sorry for myself, my wife, and our baby.  What happens when we give it up to Christ is He takes over and  without explanation we find ourselves somehow optimistic and joyful in an otherwise helpless situation.  At times lately, I feel like I'm just going through the motions and staying busy in order to avoid feeling or contemplating what is to come.  But when I'm in prayer, God just seems to be affirming me and showing me I can continue to live without the burden of "what if?".
So, there are definitely harder days and easier days, but in general, I'm really excited to see what God has in store.  I believe he wants us to trust in His promises and not fear the potential outcomes.  He is certainly teaching us an overall life lesson of living for the now and trusting in Him to provide for our needs.  Simply said, very difficult to do, but bit by bit learning to stop relying on myself and bring all things, big or small, to Him in prayer.
We are still preparing for the worst.  Attempting to plan on weeks to months at Children's Hospital, work schedule etc.    I am just trying to remain excited and expectant as any "father to be" should be.  Haven't told coworkers yet.  Only my manager and couple others.  Kinda dreading the constant "how are you's?" and "how's the baby?".  So will continue to pray for guidance with that and how God wants to use it.
Anyhow, we're so thankful for everyone's prayer and support.  It just gives us tangible evidence of how God is already using Esther's life to encourage us and others.  Please continue, and know we are praying for all of you as well.
We have appointments coming next week.  So should be updating again soon.
Praise God from whom all blessings flow!

Thursday, January 5, 2012

Results of the Amniocentesis

We found out a few days after Christmas from our genetic counselor, that little Esther does not have any further problems besides CDH and a left club foot.  We believe this is a miracle knowing that it is pretty common to have other abnormalities with CDH babies.  There was a 33% chance that she could have something else wrong with her.  The last time we had spoke to the UW doctors, they had said I would  hear from them in 7-9 days and I knew that would be right before the holidays hit.  When they had not given me a call till a few days after the holiday, I feared that they just didn't want to share more tough news to us during the holiday.  Praise the Lord everything came back clear and we have nothing to worry about for future babies too.
Jason and I are still doing great with the news.  I try not to think about how hard it is going to be when that day comes for Esther to be born.  I know it can leave me feeling discouraged and scared for what is ahead.  Majority of the time, we do not dwell on any of it and have stayed focused on preparing for the race that is ahead of us.  It feels as if Jason and I are preparing for a marathon (which we have done a few times) and we are just bracing ourselves for the unknown.  We keep asking the Lord to show us what we need to do and learn for when that time comes.  We want to be fully prepared spiritually, mentally and physically.  
I went for my first run this last Saturday since finding out the tough news and felt the Lord speaking to me in so many ways.  I will share that when we get closer to delivering the baby.  Jason and I are both reading through a study on David right now and feel encouraged by 1st and 2nd Samuel.  We both know that just because we are Christians does not guarantee that Esther will live or even live a good life.   But we know that she will be a miracle in any outcome the Lord gives us.  I will be honest though... it was tough during the holidays and being at Christmas church programs and seeing healthy children running around and wishing we had the same outcome from the get go.  But, we are still okay with whatever the Lord brings from this.  
Jason and I went to a regular doctor check up yesterday.  They told me I have gained a little too much weight in the last 4 weeks.  I had to remind them that we just came out of the holidays and I couldn't help that everyone from my neighbors to my family members kept giving us goodies.  Also, it was hard for me during the last 4 weeks to be active.  I wanted to spend as much time with friends and family during this hard time so I didn't have to be alone.  I am also now stuck in the control booth at work which means almost 12 hrs of sitting on my butt.  At least I don't work everyday of the week.  But, I am now back to exercising and keeping healthy.  The doctors want me to gain the least amount of weight needed to maintain a healthy natural delivery so the baby has more opportunity to do well from birth.  Esther's heart is still pumping strong and sounding great.   We go to another doctors apt in Seattle on January 17th.  We will get a more in depth at look at the lungs and heart of Esther and will meet the team of surgeons among many other things.

Lastly, here is another video I found helpful and useful of another little girl that has the same thing as Esther.  Thanks again for your love, support and prayers!!!!