Asking for more prayer tonight.  Met with the Neonatologist in ICU tonight.  We want you to know it will be a miracle in general for Esther to make it from UW medicine to childrens with how severe her CDH is.  Pray for God to give Esther the strength and will power to fight.  We were saddened by the news. Pray for rest for the both of us and to keep our eyes focused on the Lord.  

The neonatatologist said that when they did ultra sound they did not see lung tissue and the liver was up.  We need a miracle.  Resting in the Lord's arms tonight.

Garden of Gethsemane

Lots of people have asked me in the last few weeks how I am feeling.  Am I excited about meeting Esther?  Are we ready for everything that is coming our way?  


Let me tell you what I have been processing for the last 4 months.  This came to me on one of my last runs (about 3 months ago) while running through the woods at one of favorite places to run Lake Stimpson.  As any run of mine- its a time for me to check out, listen to music and listen for God.  A song came on by NeedtoBreathe that almost brought me to my knees and had tears rolling down my cheeks.  This song helped me distiguish what I was feeling inside and what I was scared for.  I felt like the Lord was telling me -"Rhonda, I have been there and I know what you are going to have to go through, because I too have had to endure something I wasn't sure I could make it through.  I have sacrificed something for you that you can taste and see is good."  


I had known at this time the condition that Esther was facing and was wrestling with what God was going to bring with this.  This song spoke volumes to me helping me understand what I was going to have to go through with Esther.  Helping me understand how much Jesus relates with us and has been there in more ways than we can imagine.  This song talks about Jesus in the garden of Gethsemane.  It was the night before he will be hung on the cross for our sins.  It was his ultimate sacrifice for us to receive eternal life with him.  He knows what he is about to face, but is agonizing in the garden of Gethsemane over it.  He asks his disciples to sit and wait while he prays for what is coming.  He was in sorrow and troubled.  He was overwhelmed with this sorrow to the point of death, knowing what he was about to face and knowing for a time he would be separated from his father.  He asks "Father, if this is possible, take this cup from me. Yet not my will but yours be done."  The cup was the symbol of deep sorrow and suffering and being alone in the pain.  Not only was he alone in the garden while his disciples kept falling asleep, but he did not want to be separate from his father at the moment he died on the cross.  Jesus knew that he was about to face death on the cross, but was terrified of what was ahead.


The song I listened to that day by needtobreathe spoke of what Jesus might have been saying that day.  The ultimate sacrifice he made for you and I.  The words in this song I also feel in my heart as I am so close to having Esther and the unknown of what is ahead.  The things I am terrified to face.  I have asked the Lord a few times in my life "please, take this cup from me. For I can not face what is ahead of me.  I don't know if I have the strength to do it."  As you read the lyrics of this song this is what my heart is saying too.  
Here it is Needtobreathe: The Garden

Won’t you take this cup from me 
‘Cause fear has stolen all my sleep 
If tomorrow means my death 
I pray you’ll save their souls with it 

Let the songs I sing 
Bring joy to you 
Let the words I say profess my love 
Let the notes I choose 
Be your favorite tune 
Father let my heart be after you 

In this hour of doubt I see 
But who I am is not just me 
So give me strength to die myself 
So love can live to tell the tale 

Let the songs I sing 
Bring joy to you 
Let the words I say profess my love 
Let the notes I choose 
Be your favorite tune 
Father let my heart be after you 

Father let my heart be… 
For you 

Let the songs I sing 
Bring joy to you 
Let the words I say profess my love 
Let the notes I choose 
Be your favorite tune 
Father let my heart be after you 

My heart is scared for what is ahead.  I know that I am not dying on the cross as Jesus did, but I know that he asking Jason and I to sacrifice something for him.  So as we also enter Good Friday and Jesus' day of Resurrection- let us remember what he sacrificed for us.  Thank you father for enduring far beyond what I could ever imagine or come near.  For me!!!!

In closing, Jason reminded me the other day of this reality when I said to him while I was full of fear- "Man, we did not sign up for this."  He gently reminded me- "Rhonda, yes we did.  The moment we became Christians, we did."  For life is not easy for any of us as we walk closely next to him.  But it is so worth it.  Thank you so much Lord.  For a husband that is my rock.  Someone who reminds me that this is "our normal, " with our story of Esther and its trial ahead.  Most of all, that God is going to be glorified in this as we continue to stretch out our hands to him and gently say "Lord, please take this cup from me, but not my will but yours be done."  I pray that what we sing to the Lord during this time will bring joy to him.  That the notes we choose, will be his favorite tune and that our heart will remain after him.

Rhonda Holtrop

A Week To Go!

One week to go, appointment today, all clear still!  Rhonda and I had our next to last appointment today and all is still a go for next week.  We didn't talk about it much, but I think we both were pretty anxious that they would have us stay today.  Esther performed beautifully for her non-stress test and looked good on ultrasound (Dr. Jolly commenting on her chubby cheeks!).  It has been awhile since I have made any posts and life has been fairly ordinary.  I praise God for how He has protected us during the pregnancy and allowed us to continue the day to day.  Honestly speaking, I have struggled off and on this past couple weeks with fear.  Fear of what we know and don't know.  I only have one experience to relate this to, and it happens to be one that everyone has or will experience in time, unless they are the subject of it.  I am talking about the loss of a loved one.  When I lost my eldest brother, fear was an everyday thing.  Not ordinary fears like that of dying, being hurt physically and emotionally or failure ( those fears evaporate in the hollowness of such pain) but of reality.  The constant and unavoidable fear that the reality of our grief, loss, pain and suffering is never going away and is as real as breathing.  So we are reminded in every waking moment that it is REAL.  Thankfully, I have experienced this and know that in such a time, Christ is nearer an realer than any other.  When the only meaning your life holds is grief and loss, the distractions are gone and God IS HERE!  So, recently I have felt fear.  Fear that I might have to endure loss again.  The only difference; I KNOW MY GOD IS HERE!  Not just a comfort to me, my child and my bride, but to all who call upon His name.  The Lord is always HERE, we simply need to call His name.  So my recent fear has been replaced with anxious, and joyful anticipation.  I already LOVE my darling baby girl and can't wait to meet her.
We are absolutely amazed at what our family, friends and even relative strangers have offered, given and sacrificed.  Esther's birth will likely be the most trying time of our lives.  I pray we will put our trust in  Christ.  I ask that you would pray for God to give us strength to be in the moment, stand by Esther's side, and be the parents Christ has chosen us to be.
Please grant us grace in this time.  We definitely don't know all the answers and can only guess at what is best.  We are likely to make mistakes, and likely have and will make questionable decisions.  We love and care for all who have sacrificed time, resources, family, work, and self to support Esther and us as well.  It has been extremely hard for Rhonda and I to learn how to accept help.  We both work and live to serve others, are independent and have lived this way for our entire lives.  So having to be humble and accept help has been a new experience.  That said, we are humbled by the goodness God has inspired in so many.  Thank you is completely inadequate.
But......we have a long way to go!
I think what I am trying to say is sorry in advance for any short sightedness.  God has given us all free will.  All we hope is that we will consider Him before we "move", and try to consider others and God's will when we do.
So, like my thoughts, this post has rambled and even been slightly schizophrenic.  That is where we are at.  The new NORMAL for us.  I assume a large portion of our feelings greatly resembles that of any expecting parent, and I actually find some reassurance and peace in that.  I better stop there.  There will likely be a greatly increased frequency in posts from here on out.  I pray Lord Jesus for a closer, deeper, more personal relationship with You for each and every person who reads this post.
Hope you all bring your troubles to the Lord in prayer and remember to pray for Esther when you do.
May the Lord bless you, and keep you.
May His face shine upon you, and be gracious to you.
May He lift up His countenance upon you and bring you Peace.

Jason and Rhonda's video - Pray for Esther

36 weeks

37 weeks

We went to the doctors in Seattle on Wednesday and everything continues to look great for delivering on time.  I have no contractions yet and she is still moving around when she needs to.  I am starting to getting uncomfortable more and more with sleeping- but every pregnant lady goes through that.  April 5th is my last day of work (5 more graveyard shifts left).  We will be packing our bags April 11th to be in Seattle for however long the Lord has us there.  God continues to show himself everywhere we go.  

Jason and I brought my parents (Karen and Doug) to the doctors with us so they could get familiar with the drive to Seattle and the area we will be in.  We got a tour of the labor and delivery room and where Esther will go to be stabilized for the few short hours she will be at UW medical center.  Pray the delivery goes quickly as this is my first and I will be induced (usually causing more pain and a longer labor).  

Thank you for your gifts, support, love and prayers.  WE FEEL IT!!!

Esther is coming April 12th... we think

Esther at 36 wks sticking out her tongue and keeping her hands close to her face!!!

 Jason and I got some much needed time off to venture down to Seattle once again.  We were able to have a few days off together before our appointment in Seattle.  Once waking from my graveyard shift in detention with only a few hours of sleep, we headed to North Bend to see some friends of Jason's.  We got to spend the night in a mother-in-law suite overlooking the river.  The next day we hoped to do a short hike, but saw that it was raining and way to cold to venture out there.  We opted for eating a late breakfast and watching TV while being cozy inside.  I laid down in bed for almost two hours just because I could.  I can't remember a time in my life I was able to feel okay about doing this or even allowed myself to do this.

That afternoon, we left to go to Seattle to stay with other friends near Children's Hospital.  Once again, we were blessed by others presence, prayer and hospitality in our life.  We woke up early Wednesday morning and met with another one of Jason's friend for coffee.  She also lives close to children's hospital.  Both families are going to help us in bringing food from time to time that we are storing in there freezers.   Thank you ahead of time!!! This means the world to us!!!

Our meetings Wednesday at UW medicine went great.  Our ultra sound lady was nice enough to give us 3d pictures of Esther even though they weren't supposed to.  I have included a picture in this post of her.  The picture was hard to capture because she is moving all over the place.  My amniotic fluid levels were perfect and they did not find anything they were concerned about besides what we already know.  That means that we will most likely have her on time.  This is another miracle along the way being that a lot of these CDH babies come early because they have a harder time digesting the fluid due to there stomach being in there chest.

We met with another doctor that gave us our induction date being April 11th.  Basically, Jason and I will go in on the 11th for one last non stress test and they will admit us into the UW medical hospital that evening.  They will place some gel on my cervix to start softening it up.  By the next day after a night of sleep, (yeah right!!! I don't sleep under any stress or nerves) we will begin the next process of induction to get Esther out naturally.  As soon as she is born we will get a brief second with her and she will be whisked away into a room next door to begin placing her on a ventilator, iv and multiple other tubes and devices to help her breath, live and monitor.  A few hours later, I will say goodbye to Jason and Esther as they are transported to Children's Hospital in an ambulance a few blocks away.  As soon as I am cleared to leave the hospital, I will join them in the NICU.

Lastly, we met with a nurse from UW medicine.  She was going over basic questions with us and whether or not I am prepared to have our little girl.  She asked how we were coping with all of this.  Jason and I said, "great, because we have faith that this is the Lord's will in our life no matter what the outcome is."  She got a huge smile and asked if we were Christians.  We said, "of course we are.  We love him with all our heart."  She got so excited to tell us she was too.  She went on saying "I know God picked you two to have this special girl.  It takes special parents to take this on."  Tears started flowing down my face.  I think she thought she had hurt me feelings by saying that - but all I could say was- "I know.  I know and trust that he is so redeeming in everything.  That he has never let us down.  That no matter what happens- this is for his Glory."  She was so encouraging.  We left UW medicine with the biggest smile on our faces.  I love how the Lord sticks people in our path to remind us along the way that we are doing the right thing and that he is proud of us.

Jason and I are still hoping to bring our full size trailer (Winnebago) to Children's hospital to stay in while we wait for 2-3 months for Esther to get well enough to take her home.  At this point there is one spot open in the parking lot and it is first come first serve basis once Esther is admitted to Children's.  While she is in the NICU, we can stay in sleeper rooms that are in the NICU.  If we need to, we can stay at the Ronald McDonald house for $25 a night.  At this point we think Jason will be able to take about 4 weeks off (2 with sick/vacation, 2 with medical disability).  After that, he will use 2 weeks of FMLA (unpaid leave).   After he has gone 2 weeks unpaid, people from the hospital can donate their sick and vacation time allowing him to stay with me and Esther at the hospital and helping with some of the financial difficulties we may have living on one income.

Many of you have asked how you can help.  Here are some ways you can help in the next couple of weeks before we take off for Seattle.  Since we plan on staying in the trailer (pray that we can), we will be able to store lots of snack and food items for the long haul.  You can help by dropping off or sending these various items to our house.  Also, even after we have left, you can drop them off to us at the hospital or even give them to my parents or friends that are visiting and they can bring them to us.  Let me know if you need the address of Jason and I's house or my parents house.  Here are some helpful ideas:

1) gas cards for driving back and forth to Seattle.
2) Visa cards for food/personal needs during our stay
3) Gift cards for QFC, Safeway or other local grocery stores near by U Village.  Look up restaurants near by U village.  You can even send us a gift card to that restaurant so Jason and I can have some time away if one of our parents is there to be with Esther.
4) Providing a snack item for our stay that we can store in our trailer. This will allow us to save money and stay close to our girl and not have to leave as often to get food. Here are a number of things Jason and I enjoy getting when we go to Costco for example: beef jerky, protein powder, nuts, healthy bars, wheat thins, crackers, healthy chips, dried fruit, coffee beans, cereal, bread, jam, peanut butter, sweet and salty bars, etc
5) providing dinner meals for us at the hospital.  We are getting meal train set up and will be sending out that email for those that are interested.  Hospital food gets old fast.
6) send mixed cds (for not only Esther but for us to enjoy too), magazines, articles, funny episodes on DVD, music, stories, books, encouraging sermons , movies, etc. (anything that will keep our mind off of what we are doing in the moment)
6) Spiritual support – having pastors, strong friends of faith come and pray with us.. having friends that can pray over us when we don't have the strength. There may be times when we are angry or scared and that doesn’t mean our faith is any less strong.
7) Send texts, facebook msg's, phone calls, emails, letters and scripture.  We may not be able to respond, but we will hear and read all of it.  

8) Lastly, pray for God's will.  For the strength, peace and comfort. For rest.  For wisdom in medical decisions that can be life or death decisions for Esther.  Pray for no ECMO machines. Pray for the other 3 moms that will be having CDH babies at the same time.  Pray that Jason and I can be used for God's glory and be an encouragement to others along the way.

Thank you everyone in advance for how big your hearts are.  We hope we did not leave anything out.  In the meantime, we will continue blogging when we can.  Jason and I will most likely set up a caring bridge site if that is easier to follow.

Lastly, here is a picture of a painting I did for Esther's room right above her crib.  Our theme in the room is owls!!!  I can't wait for her to be in it!!!

CONVICTION

It seems like time is slipping away.  Haven't posted in quite a while, and I apologize.  Rhonda and I had planned from the start to attempt to use this post to glorify God and help witness to others how He is leading us through a difficult time.  I have recently found that I hadn't been doing that, and have actually been filling my time with projects and tasks to avoid having to face things.  It is completely out of character for me and was very depressing to discover.
For those who know me, it is probably hard to picture me without downtime.  I have spent my life with more than a little "me time", sitting on the couch, pondering, thinking or just plain spacing out.  So last night when I realized that it had probably been weeks or longer since I simply did nothing, it hit me.  I was avoiding the confrontation of mine, Esther, and Rhonda's situation.  Not all to rare in these circumstances, but definitely out of character for me.

So, today you hear from me again.  In my absence we have had several small struggles, joys, triumphs, and have transformed a little from the extremely faithful servants we started as.  I don't necessarily think we are questioning God, or have lost faith.  We have simply grown closer to the "scary time" when we will be "in it" for the long haul.  Appointments have gone great to God's glory.  We learned, as Rhonda posted, that Esther's foot was no longer clubbed (amazing!), she is growing and developing as expected, and moves like crazy in her Mama's tummy.  For a first time daddy that just lights me up.  I can only imagine what's going on in there.

Last appointment, this last Wednesday, could almost be described as routine (again, it is amazing when anything seems routine or there is no news).  University of Washington doesn't need to see us for 5 weeks when we will be setting a date for induction of labor.  We met Dr. Cheng, and were instantly put at ease.  We had been hearing about her since our first appointment and were not let down.  She is the head of the department and will likely be delivering Esther.  She is simply, naturally comforting.

In the meantime, life goes on.  We have had a few repeating spiritual struggles and continue to pray through them.  There is lots to do, but I have found conviction to be a very big comfort and am allowing the Lord to lead me as I lead my family.  We would like to thank all those who are following our little epic.  Thank you for thinking of us, praying for us, sending us your encouraging words and blessings.    For understanding, forgiveness, hope, strength, and most importantly, FAITH.  It is actually noticeable in tougher times I have found and don't believe that is a fluke. 

Due to the emotion and conviction of the last couple of days I just wanted to share a personal experience from my family.  As those who know me know, I lost my eldest brother 9years ago in a car accident.  Through that experience and the pain, grief, loss, chaos that it brought, I found just how close God comes in our hour of need.  I have been a christian since my youth.  My walk has not always reflected that and I even told God at one point "I got it covered.  I know what you want and command of me, but I think I can show you another way."  When my brother went to be with Christ, I was at a point where I knew I didn't "have it covered".  During the days and months that followed, God not only sustained me, He gave me hope in hopelessness, peace in chaos, and oddly "We", Rhonda and I, can maintain faith and assurance when our situation doesn't grant it.  When we are at our lowest, most empty times is when God is most "real" or present.  You can actually feel, see, hear and know Him.
We need God!

So, as Rhonda's coach who has been through this very same trial with his 13 year old son said, I am excited for you.  In our struggles we get to be more intimate with God than any other time.  I am terrified of our near future, but I am excited to see God.  To hear from Him, feel Him holding us when we are ready to give up and feel His peace in our chaos.

I hope my rambling gives a little insight and understanding into our situation, and can be useful or helpful for your own situations.  Don't be afraid to ask God to come into your struggle.  There is nothing you have done or could do that He would avoid you for.  He literally loves you no matter what.

Notes from a CDH mom survivor

Over the last few months I have searched and pondered through many blogs in hope that I would find someone from our area that has a CDH survivor baby.  One that may have dealt with this in the last few years so we would know a  little more about what our experience at children's hospital may be like.  I have found one from the Seattle area so far.  Here is a piece of their blog that I thought may be more helpful for those of you at home wondering what we are really going to go through at the hospital and what you can do to help us along this tough journey ahead.  Some of this info you may have already heard but others may be new to you.  This was written to the Rondeau's family from a CDH mom survivor.  So here it goes:

 

 Mommy of a CDH Survivor

“It’s just a hernia…they’ll fix it and he’ll be fine, right?” 

“My baby was in the NICU too, it’ll be okay.” 

“Don’t worry, things will be JUST fine. He’s going to be okay.”

I heard these words one too many times, when our little boy was diagnosed with CDH. Often, the severity of this birth defect and it’s fifty/fifty chance of survival, is undermined by it’s name, so I wanted to share a little more about it from the medical perspective and share our story.

First, I want to share the basic facts (that were collected from several sources) that we shared with our family and friends when our little one was diagnosed (some of it may be a repeat for those of you blog followers that have done some research about CDH, so I bolded what I felt were the most important parts.) 

Congenital diaphragmatic hernia (commonly known as CDH) is an opening in the diaphragm (The dome-shaped muscle that separates the chest cavity from the abdomen.) It occurs at approximately 8-10 weeks gestation, when the diaphragm (for an unknown reason) fails to close completely. The hole allows the abdominal organs to push into the chest cavity. Organs that should be in the abdomen (such as the intestines, stomach, liver, and or spleen) slip through the hole in the diaphragm, into the chest, during the baby's development. Once in the chest, these organs take up space that should be available for the lungs to grow. CDH is a life-threatening birth defect because it limits the growth of the lungs, which is called pulmonary hypoplasia. 

Congenital = born with
Diaphragmatic = involving the diaphragm
Hernia = condition where organs/muscles protrude through a hole they aren't supposed to
 
CDH is as common as Cystic Fibrosis and Spina Bifida. Yet, until they have a friend, family member, or child diagnosed with it, most people have never heard of CDH.  

Healthy lungs have millions of small air sacs (alveoli), which resemble a balloon filled with air. With pulmonary hypoplasia, there are fewer air sacs than normal, the air sacs that are present are only able to partially fill with air, and the air sacs deflate easily due to a lack of a lubricating fluid called surfactant. When these conditions are present, the baby cannot to take in enough oxygen to stay healthy. 

After birth, babies are immediately intubated, allowing a ventilator to breathe for them. The very sick babies will require ECMO, which is a heart/lung bypass machine. It is a scary step to be put on ECMO, but sometimes it’s the only choice. The benefits need to far outweigh the risks for them to take this step. They will undergo repair surgery only when they are stable- sometimes this is between a few days to several weeks after birth. Most parents of CDH children will not hold their baby for the first time until several weeks old. 

One of the most severe issues with CDH babies is called pulmonary hypertension. The compression and impairment in the development of the lungs, leads to this dangerous condition involving high blood pressure in the arteries that supply the lungs. These blood vessels are underdeveloped, so they can't carry as much blood, as a normal baby. As in a kinked garden hose, pressure builds up and backs up. The heart works harder, trying to force the blood through. If the pressure is high enough, eventually the heart has trouble keeping up (and will start to fail unless ECMO is used), and the blood can’t circulate through the lungs to pick up oxygen. 

Now, with all the medical terminology out of the way, here’s a little from a personal perspective- the below is a short version of the some of the scariest, most intense, and most emotional two months of our lives: 

Our CDH survivor was intubated immediately and transferred after four hours to Seattle Children’s Hospital (SCH), after he was stable-ish. He ended up on ECMO on DAY 3 (which is often referred to as after the “honeymoon period” due to pulmonary hypertension that started as mild, then became severe and hit him like a ton of bricks on day three.) One side of his heart was failing, trying to work TOO HARD to pump into those underdeveloped lungs. ECMO would hopefully give his body a chance to rest, for the long fight ahead. He was taken off ECMO after several “trial offs”, when his body finally proved he was ready again for the ventilator alone, after almost two weeks of being on this lifesaving machine. On DAY 18, we had one of the best days of our lives-we GOT TO HOLD HIM FINALLY! He remained on the ventilator, getting the settings down to an acceptable level for surgery, until DAY 23, when he finally had his repair surgery. He had almost all of the left side of his diaphragm missing, a huge defect, with most of his abdominal organs in his chest. He spent over two weeks recovering from his surgery, before he was ready to come off the ventilator.  He was extubated on DAY 39- he breathed on his own, with a boost from a nasal cannula, for the first time ever! 

He spent over two months in the hospital total. After extubation, he battled reflux, worked on weaning down on oxygen levels that were administered through his nasal cannula, started to learn to eat, and weaned off the heavy doses of narcotics and other necessary medications that he had spent the first 40 plus days of his life. He was oxygen dependent until 9 months of age and was feeding tube dependent until 7 months of age. He is now a VERY healthy and happy two year old, but the CDH journey is never over. He has some remaining reflux and still has underdeveloped lungs (colds and germs hit him harder than most and we still fear hospital stays if he gets a yucky respiratory illness). We are also continually concerned with the risk of reherniation, since his patch won’t ever grow, but he will.  We are blessed he is a CDH survivor-there were days during his hospital stay that he was so sick, we weren’t sure if he would be a survivor. We never take anything for granted and we enjoy every moment of each day, knowing what the outcome could have been. 

I guess what I want to end with, is to tell those people who will love, support, and pray for the Rondeau's as they go on this journey, that it is a ROLLERCOASTER. There are SO many highs and lows with CDH.  They will need to have you celebrate the little successes (like diaper changes or weaning the ventilator settings “just a little”) and they will need tremendous support during their lows (and unfortunately, there will be those lows). They will need prayers, loving thoughts, offers of help, and listening ears. It is horrible feeling to see your child hooked up to SO many things and not being able to do anything to help them.  You lose a sense of time and place, just having to wait and see how they do, each hour of each day and not knowing when there is an end in sight. 

Sitting by a NICU bedside hour after hour is exhausting- watching those monitors will become their life, so give them all you have. Love on them, tell them you care, comment on their blog with your wishes of quick healing for Jacob.  Pray for no ECMO, stable days and nights, a repair surgery soon after he is born, lots of lung tissue under all those organs, and peace for Katy and Andy to help make decisions with the team of medical professionals that will be caring for Jacob. 

I can only tell you that Jacob is in the best of hands at Seattle Childrens Hospital. They are both progressive and conservative at the same time, if that makes sense. They are compassionate and realistic. The doctors, nurses, respiratory technicians, receptionists, cafeteria workers, social workers, playroom supervisors, and all who work there, exude compassion and understanding for parents of sick babies.

Jason and I got the chance to meet with a local family a few weeks ago that shared in our experience of a child with CDH.  I can't remember how many years ago it was, maybe 10-11 yrs ago, Dave and Vonda Vanderyacht (Dave was my softball and basketball coach in high school) had their second baby boy.  After he was 6 months old their baby suddenly became very sick.  They took him to the hospital and found out they needed to be rushed to Seattle and that their baby also had CDH.  This never showed up during Vonda's ultrasounds, but sure enough their boy had his stomach right next to the heart and it was pushing the heart to the the other side of his chest.  Lucky, he survived and is doing well today.  It is amazing that there son was doing so well at birth under these conditions and they had no clue anything was wrong.  He still has his heart on the opposite side of his chest and struggled with being sick for his first years of life.  You would never know he had such a thing at birth.  We felt blessed to have them pray for us and hear how their experience was at Children's hospital and what life is like today for them.  




I can still say its a day to day thing for me.  I get so scared when thinking of what Jason and I will have to go through.  The times I will be without Jason while he needs to work to help pay the bills and how hard that will be for him to be away from his family.  The hours I will be waking up to pump breast milk (every 2-3 hrs) and the times I will struggle with not being able to help her, cuddle her and breast feed her.  The times I wont get do things the things that mom's get to do when babies are first born.  I could go on and on with what scares me and makes me sad thinking about.  But most importantly, I am always reminded within these moments of sad thoughts, that no matter how hard this is going to be, it is God's story and he will use us and take care of us in this.  Also, that every second we get with Esther will be a gift and a miracle that she can even survive outside of my womb.  

We are overwhelmed and humbled by all your emails, posts, encouragement and offerings of help.  Just recently we talked to some friends who know people that want to help us and go even more above and beyond.  We have had someone offer to take professional pictures of Esther, Jason and I at birth.  Also, there is a hair salon in Fairhaven that does a fundraiser every year to help people in need.  On February 24th they want to have a fundraiser for us and all proceeds would go to helping with our expenses towards medical/living and sleeping arraignments/eating etc.  There will be more details to follow.  Also, a church that is making a quilt/blanket for Esther with her name on it.  The ladies of the church will pray over it while the blanket is being made and follow us along in our journey and continue to pray for us.  We have people praying all over the world!!! 


My next appointment in Seattle is February 15th.  We get to have a tour of Seattle Childrens NICU, get another ultra sound to see how she is doing and then meet with the doctors.  You can be praying for me as I head into the graveyard schedule at work this Wednesday.  I will be working this shift for the next two months before Esther is born.  This means that I get to work 6pm-6am 2 days on, 2 days off.  Lots of time to think and pray and hopefully not too much time to dwell. Jason and I can't say this enough- Thank you.  I wish there was some way we could repay you for everything you have been to us thus far. 


Rhonda (two more months to go!!!)





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