Riding the waves of HEMI Mustard Rastelli

October 4, 2015 3pm

I feel like this might be a broken record, but no extubation today. Joseph needs to work on a few things. Pray for
1. Pressure and swelling in lungs to go down which should allow him to breathe on his own more
2. Take more unassisted breaths.
3. Remain calm under his sedation to allow healing to take place

Since this isn't my first run around with this I have learned the importance of taking care of myself. Today I went to church with my family and enjoyed worshipping with others. We were joined by the missionaries that are here from India whose daughter had brain surgery on Tuesday. The sermon was about preserving the truth of the gospel. Although we talked about this in relationship to conflict I think about what we did in bringing Joseph into our family as our son. Adopting is preservation of the gospel to the fullest. We are not super heroic but because I fully believe It is not about me that loving a child with a complicated heart defect can be made elegantly perfect by our Lord.

Oct 5, 2015 11:40 am

Extubation this morning! Now sporting our new pressure support system mask. Today we work towards getting his lungs improving so they don't need so much auxiliary support. Pray for the fluid in his lungs to decrease. Pray for his two heart systems (the Glenn and the hemi mustard rastelli to start working in sync rather than competing. Long run pray for his atrium rhythm to get going to avoid a pacemaker

Monday Oct 5, 2015 10 pm

So thankful for the breathing tube out of his mouth. He is now on the c pap machine which is assisting his breathing and supplementing his oxygen with nitric oxide as we were before. The nitric oxide has been helping to relax his stuff lungs to allow the blood to flow more efficiently. Problem for the day....they took away all sedation medication! He was fuzzy through the day and has become more alert times throughout the day in which he is not impressed with his new mask! He is such a good boy an for the most part does not mess with it. But when he does it comes flying off with a vengeance. The episodes are usually precipitated by his need to cough. But that hurts😢so he panics and his stats drop real low. He can't sustain his breathing right now without support. Pray for this as it is his next big hurdle. He still has swelling and fluid in lungs being managed. Pray for me as it is very hard to see your child suffer awake. Pray for his emotional well being as he is more aware of his constraints and how this will affect his bonding with us. Pray that he will see us loving him even in this really hard place and not be traumatized.

Tuesday 10-6-2015 4:00 pm

Two steps forward, one step backward. With the removal of the the ventilator and now bi pap machine it has revealed the true reason for his underlying breathing problems. Through ultrasound and multiple x rays today it was confirmed he has a damaged nerve which is causing paradoxical movement of the diaphragm. His lungs should expand or move downward when he inhales but his left side moves upward. In addition this space is already diminished due to his mesacardia, where his heart sits midline. Bottom line....he needs surgery to repair this soon. Surgeon in surgery now and we will talk with him soon as to when it will be. As early as tonight possibly tomorrow.

I did get to hold him twice today and rock him to sleep once. Treasure the sweet moments you have with your children, in moments like this you never know how many you will have. Take the extra moments they request , show them what they mean to you.

Tuesday 10-6-2015 7pm

Change of plans for the good. Spoke with surgeon . He had been in another surgery when decision was made to move ahead with a procedure to correct his paradoxical functioning diaphragm. The plan is to wait and see how he does. His breathing has improved over the course of the day. This was a big day for him coming off the pressure support and he needed some time to bounce back. His best therapy for the day was snuggling with His sister. So pray for the damaged nerve to be restored and him to be able to begin to take steps moving forward. Pray for him to feel comfortable during this time and perseverance for all our family members, including the children.

Wednesday 10-7-2015
Physical therapy gone bad! As we have learned in our journey to follow this is not our "plan" but the Lords will be done. Today was a long arduous day of suffering for Feng Yu. His body is exhausted and tired. Some things are beginning to work well like his "dumb" sinus rhythm woke up and seems to be keeping pace and his Glenn procedure has accepted his new hemi mustard rastelli friend circulation. Those are huge accomplishments and for those I am grateful. Right now his lungs with fluid and paradoxically moving diaphragm is making breathing difficult and his recovery near impossible. So as a team we have all decided it is best for him to have surgery tomorrow morning to tack down his left side of the diaphragm. They will also put in a feeding tube and new PIC line for his medications. His body is just fallen behind and weak so we need to get a jump ahead on nutrition until he feels better to eat. 

2 Corinthians 12:9-11New International Version (NIV)

9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Really slow progress....

Friday, October 2, 2015  9 pm

No extubation today. Another xray showed he now has Pulmonary edema, which is swelling of the lungs because of fluid. Why? There could be a few reasons and hopefully just because of his traumatic surgery on Tuesday. They will work tonight to get the excess fluid off his lungs to prevent any damage. If things do not progress in a positive direction they will look to a TEE or heart catheterization to diagnose if there is an obstruction in the pulmonary veins. He has defied most typical treatments. His body and anatomy are specially designed and think right now to give Dr's and nurses grey hairs!
Prayers for tonight.
1. Pulmonary edema to go away!
2. Fluids to reduce around his whole body.
3. As they wean his o2 that he would be able to maintain his o2 at least 90.
4. No fever/infections
5. blood pressure remain stable

The sweetest thing tonight before the kids at home went to bed we face timed. The girls got to see their brother and were able to say good night and I love you to him! The picture is of Feng Yu's sweet face I feel in love a year ago and we said Yes, Lord this is going to be our son! No matter what! We love you sweet boy.

Saturday 10/3/2015 3 pm

Feeling a bit muddy today??? The picture is from a few weeks ago when the kids found the mud on the track to play in. So today seems another day to stay the course with some hope shining through, but meantime, we feel in a mud pit! Slight improvement, steady numbers, but not enough to extubate. He has slowly allowed them to reduce his dependence on some of auxillary support but not so much that he can come off the ventilator. Feeling a bit disappointed at this stage as I felt we would be further along at this point. But I have to keep the whole picture in focus and keep my eyes focused that some miracle happen over the course of time, not just in a few days! The pulmonary edema has stayed unchanged. Echo this morning showed his mitrial regurgitation it better than prior to surgery. All good things. We have lots of room for improvement and many more ways for God to show himself through this process. It's slow and steady. We feel confident in the diligent care he is receiving. Even more so in the one who orchestrates it ALL. So even though we feel in the depths of it now, our hope is in the Lord. So that can make us smile and have hope!

Psalm 100:5 (NIV)

5 For the Lord is good and his love endures forever;
his faithfulness continues through all generations.

Psalm 130:5 (NIV)

5 I wait for the Lord, my whole being waits,
and in his word I put my hope.

3pm  Sunday 10/4/15

I feel like this might be a broken record, but no extubation today. Joseph needs to work on a few things. Pray for
1. Pressure and swelling in lungs to go down which should allow him to breathe on his own more
2. Take more unassisted breaths.
3. Remain calm under his sedation to allow healing to take place

Since this isn't my first run around with this I have learned the importance of taking care of myself. Today I went to church with my family and enjoyed worshipping with others. We were joined by the missionaries that are here from India whose daughter had brain surgery on Tuesday. The sermon was about preserving the truth of the gospel. Although we talked about this in relationship to conflict I think about what we did in bringing Joseph into our family as our son. Adopting is preservation of the gospel to the fullest. We are not super heroic but because I fully believe It is not about me that loving a child with a complicated heart defect can be made elegantly perfect by our Lord.

Blood thicker than water??

Facebook Wednesday 8:00 am

Joseph has woke up a bit. Peeking his eyes open and wiggling his hands and feet. He is very responsive to my questions and says he's not in any pain. I asked if Dr A fixed his heart and he shook his head yes! So thankful for this team working tirelessly to manage him. His heart rhythms continues to be an issue. It's sporadic and they are trying to figure out how to manage it. Praise God for this miracle that has given to Feng Yu

Facebook Wednesday 8:30 pm

Some people say blood is thicker than water- I would have to disagree. Family is family. Orchestrated by God, Created by God in many different ways. These two met only 6 months ago and are as close as twins. Today was rough with many ups and down as we expect- but the one name that made him perk up and the one name that called him down was his little sister, Hua Hua.

Today was filled with many waves and bumps as expected for the first day post op his full heart repair. Overall Feng Yu is doing well. They are pleased with the repair. Now comes the hard part is getting his body ready to accept the new. He's swollen, beat up and his heart is sore right now. He still has a arrythmia where his atrium and ventricles are not working in sync. His heart rate is running high and his blood pressure is finally acceptable. He's staying intubated tonight due to some blood coming up this afternoon and being unstable at this point. His lungs look good for plural effusions as of now! So we ride the roller coaster of of post op heart surgery. As hard as it is to see him laying there, both Ryan and I were not as nervous as in the past, and seem to have a peace about this journey. Maybe ignorance, maybe experience, most probable the hand of God working in our lives showing only He knows best.

I'll end with last night as we anxiously awaited to come to see him for the first time. After leaving him in the OR 15 hours prior, we sat in the family waiting room. This is where you go before your child is brought to the room. They do not want the family in the room while they get them settled in because it is pure chaos. Ryan and I sat down and their was another man with his teenage daughter. We had seen him earlier in the day in another waiting room. You know by now you are the last ones left to see you children for the day. The last and probably most difficult cases of the day- because it's 10 pm and neither of us have seen our children. As we begin to talk we learn they are Christian missionaries here from India having a tumor removed from their daughter's brain. Both Feng Yu and their daughter were delayed coming up and would not arrive for much later than expected in their rooms, but God had that covered too! We spend the next close to 2 hours sharing fellowship with another family (his wife and their kids too and family friends) who serve the Lord as we do. We all felt so blessed to be surrounded in love rather than fretting over the things we could not control. So thankful for the blessings God has provided.

Surgery rescheduled for Sept 22.

Well we all left the hospital Tuesday morning about 9:30.  After numerous surgeries with multiple children, I turned to Ryan as we sat in the car  and said 'Well we never experienced that before!"  Always something new....but we were both totally at peace with the decision to postpone surgery.

Back up to 6:15 am Tuesday morning.  Everything was going as planned.  We arrived on time, for once!  We checked into his pre op room, watched a few cartoons, met with Dr A., the other surgeon, the anaesthesiologist.  He took his Versed (relaxing meds) and one the last trip to the bathroom, I noticed a small rash in the groin area.  After pointing it out to Dr A., he called in a team of peds doctors to look at him.  The whole team decided it was best to wait and not take any chances introducing a possible infection/complications.  This surgery is big-  not anyday kind of surgery for this team and they want the best results for little man.  We need him in perfect shape going in and any variable they can control (ie. possible sickness) they will wait.   So we enjoy his sweetness, laughter and the "FUNNY YU" for another week.  When I told him we would go next week to fix his heart, he responded with, "we already did!"  He is right, Yes, we did go to the hospital, but...  nevermind.

As time goes on, you would think our anxiety would be rising, but it's not.  I am completely at peace with this miracle surgery. God is on control of my heart and this little man is going to ROcK THIS!

Prayer request...Joseph (Feng Yu) does have the start of the sniffles.  It is going around our house like a fire right now.  Pray we can keep him away from these germs!

SURGERY SET FOR 7:30 am

 Just four years ago, I can only imagine the agony as someone placed their sweet baby at these gates in hope that he would live on.  They were selfless and honored their son in hopes he would receive medical care.  His heart was physically broken.  We exist in this broken world and I don't know why, but we were chosen and are honored to be this little man's parents.  He is the sweetest little boy, with the biggest smile. I only wish that his birth parents knew tomorrow he will be given the chance of a lifetime to repair his heart.  I wish for them to know we will walk beside him and show him love through this all.  I wish for us all to reunite in heaven one day and rejoice that their son tomorrow had a miracle of a surgery!

  Here's to you Little Man....We're fighting a big fight tomorrow-with the Lord leading the way!

 Romans 15:23  "May the God of hope fill you with the joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."

Preparing our hearts for what's ahead.

Can we ever truly be prepared for the unknown?  I have made freezer meals, packed snacks for the hospital, made child care plans, wash all the clothes, stocked up on groceries, talk in an attempt to prepare the children.  But are we prepared to head to into the largest medical battle our family will fight?  Emotionally I feel like a mess, disorganized, confused, second guessing our decisions, and very fearful of the possible outcome.  People ask how long will the recovery be.  Really, I don't know.  The surgical team doesn't really know. We don't know.  First, we need a successful surgery.  Then we will focus on recovery.  So how do you prepare for an indefinite hospital stay, an unintended surgical outcome,  the potential the loss of a child?

Ryan and I were blessed to have a great friend offer us a date this weekend.  Yes, a real date (We joke that our dates are the time during our children's medical procedures).  Kind of pathetic!  Dinner at the UW hospital gets old :(  Anyway this weekend we went to see the movie "THE WAR ROOM".   Oddly enough our answer was in the movie.   Prayer is where we will prepare our hearts for this battle that lies ahead.  And the rest will be left in God's mighty hand!  We pray- God does the Hard work!  Our God goes before us and knows the outcome of this surgery, recovery and HE WILL WALK BESIDE US THROUGH IT ALL.   Our peace will lay in his hands-whatever the outcome.

Last night I began reading 1 John and how we are to love one another.  Adoption began because our Father in Heaven loved us to send his son to redeem me.  What an awesome thought!  Then our family responded to the Lord calling us to three children who needed love-a family.  We adopted them.   We Love because he first loved us.  And what a blessing to have this child as my son......

Surgery is set for Tuesday, Sept 15.  Our 15th wedding anniversary will be Sept 16.  We hope to celebrate our youngest son's successful open heart bi ventricle repair.  If all goes as planned, he will have a fully functioning restored heart!  It will truly be a miraculous gift.

A little fun from the last month........

  Feng Yu, (Joseph depending on the day) turned 4 years old.  We celebrated at the park and pool.

  The little kids all conquered their fears this summer by learning to jump off the diving board.  Quite an accomplishment for those who just learned to swim!

Okay Justin....Show off!!!

   How many children can you fit onto the slide?  Just for fun can you pick out the ones that are not Oehlhofs?  The Douty cousins are sprinkled in place 2 and 4.

These two are like 2 peas in a pod.  Huahua gets home from school and asks where Feng Yu is.  Not like I miss you Mommy!  Where's Feng Yu?  

 There's always a doctor available in our house.  Good thing with our extensive medical needs.

 Then there is the poor bird who flew into the window.  Huahua thought at first it may have been sleeping.  But after a good examination, we decided it was DOA.

 After everyone held and thoroughly examined it.....it was properly buried! (by the kids)

 WHAT???   You don't do this at home too?

   JUST RUB IT FROM SIDE TO SIDE....   NO PROBLEM IF IT DRIPS ON THE HEAD.

   THEN LATER RINSE OFF OVER HERE!  VERY RELAXING MUD BATH...............

 Feng Yu wants to be like his GeGe, Justin.

James is trying to keep his hand out of the water (You know he had surgery on it a few weeks ago!)  Does this fall into the discharge category of self regulation?

 Not sure why I got this job..... I was not the one who gave the okay to enter the mud puddle????

 <<<OUR FIRST WEEK OF SCHOOL PICTURES>>>>


Some were excited, some were scared, some were numb to the newness, some faithfully walked beside those that were scared, holding hands as their solid post.  It was a week of big transitions in our household.  Two children whose lives a few years ago looked very different entered a school building for the first time to a structured day full of guided activities, lots of children and loving teachers.  I am so grateful for our New Glarus teachers and their willingness to embrace our children in the place they are and love them.  I am so proud of my bio kids and their willingness to love theirs brothers and sister through the unknowns with courage and bravery.    They have learned to love with no boundaries and many days with unselfishness at a very young age.  So proud of them all!

1John 3:18 says "Let us not Love with words or in talk only. Let us love by what we do and in truth."