Join us in a "Walk for Livie's Heart"

Every since Olivia went to heaven I have been thinking that I have to write my last blog with the label "Olivia". Well its been almost two weeks and I just haven't been able to do it.  I don't really like to close chapters of my live.
Then tonight I thought, I don't really have to close this chapter, Olivia lives strong in our memory and in her memory we are going to join the "4th annual Shamu and You Family Walk" to benefit Rady Children's Hospital.
Crystal has started team "Livie's Heart" we are trying to get 50 people to be on our team so that we can all have a T-shirt with our team name and a team pop up the day of the event.  October 2, in San Diego on the bay and by Sea-world.  I'm very excited.  We already have about 20 people so if you read this and your not signed up, Please Do!  Even it you don't walk the $27.00 registration fee will go to a very good cause; the hospital that took such good care of our precious Olivia.
Please Visit the following site and support our team, Olivia's team, Team Livie's Heart.

http://ShamuAndYouWalk.kintera.org/liviesheart

August 14th, Saying good bye to Olivia

On Saturday Aug. 14th at 4:30 in the afternoon we had to say good bye to our dear sweet Olivia, after 73 days of fighting Olivia went to be with Jesus.  Now she is twirling in heaven and her pain has given way to rejoicing.  We were fortunate to spend the whole day surrounded by family and special friends like Pastor Josh and Mackensie.
Sunday we packed up Ronald McDonald House and came home.  Crystal and Justus are comforting each other and enjoying Ezra and Evangeline.
I want to thank everybody who so diligently kept up with this blog and checked fb so you could pray for her and us.  God did not choose to heal Olivia here but your prayers did not go unheard. We were held up by your love.
There will be a celebration of that love and Olivia's life on Saturday Aug. 21st at New Song Calvary Chapel in Lake Elsinore at 11AM followed by a potluck lunch with lots of love and fellowship.
Everybody is welcome.

Olivia Two months and counting....

Olivia was 2 months old yesterday, she will be 9 weeks tomorrow.

Olivia is still in bed 31 in the NICU and we are still at Ronald McDonald House across the street from Rady Children's Hospital in San Diego.  Not too much has changed.
After two open heart surgeries and a huge amount of intensive care our little Olivia is not really where the doctors would like to see her.  The surgery was successful but Olivia is weak and she is having some trouble with a lot of different internal organs. She is still considered very critical and we are still praying for a miracle.
She is the sweetest little peanut with such expressive eyes. We all love her so much


Evangeline turned two on July 24th and we had a big fun party for her here at the house, it is not easy "getting on with life" while we know Livie is so sick but we must.  We had pizza and a princess cake and friends and family all show up to celebrate Princess Evangeline. Thank you God for the many blessings you have given us.

Pizza, presents and a princess cake= A Perfect Party!

Aunt Kelly and cousin Selah surprised us with a little 4 day visit this last week. Oh how sweet it was to see them. I picked them up at the San Diego airport on Friday night, we had a whirlwind weekend in Lake Elsinore and then two days of visiting in San Diego and then off again.
I want to say a special Thank You to the family that made this trip possible, you are a huge blessing to my family.

Auntie Kelly and "Cuzwlynn Selah"

Now we start our third month, school is starting at the end of Aug. and I will have to be changing my schedule, Caleb is a freshman in high school this year and I am teaching two classes so we won't be spending as much time down here, I know we will work it out but I am already feeling separation anxiety

July 20th (Our50thday)

It is incredible to think that we have been Olivia's journey for 50 days. Both ways, I feel like I have known her forever, she holds such a place in my heart. but yet I remember her birth like it we just yesterday.
Today she is not doing so well, Crystal and Justus will meet with doctors again this afternoon and try to understand her plan, try to wrap their heads and hearts around where we are.
Last Monday there was a heart support group meeting here at the house, we are lucky to have those who have gone this route before stop to encourage.

Olivia; July 9th

Friday again, another week gone.

Olivia is still holding her own, she is taking things slow and easy so we must follow her lead.  She is still in the process of being weaned off of the ventilator and her swelling is much better.  We are in the slow and steady phase of Olivia's journey.
I've talked about marathon training a couple of times before and I can't help think about that again now, the time in the race when you've been out for a while, the bands and cheering family and friends are behind you now and really all you can hear is the rhythm of your own feet pounding the street.  This is the time when your only running for yourself, you have to dig really deep to keep going here because this is the long phase of the race and you can't see the finish line, you just keep going because you know that it is the right thing to be doing.
That's where I feel like we are, its not really a bad place to be, it just feels long. The days kind of run into each other without event, Crystal walks over and sits with Olivia, she walks back and is mommy to Ezra and Evie, she eats, rests, and walks over and sits with Olivia again.
Even though I am going through this too it's different for me, I get to go home for the weekend again, I'll be picking Katie up in Mission Viejo because her car is in the shop, Caleb has another youth event to be taken to, Erik and I might go to dinner or a movie and my house "stuff" is always waiting. I get to touch normal. 
Please keep Crystal and Justus in you prayers that they are able to stay strong during this time.

Isaiah 40: 26-31
26 Look up into the heavens.
Who created all the stars?
He brings them out like an army, one after another,
calling each by its name.
Because of his great power and incomparable strength,
not a single one is missing.
27 O Jacob, how can you say the Lord does not see your troubles?
O Israel, how can you say God ignores your rights?
28 Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding.
29 He gives power to the weak
and strength to the powerless.
30 Even youths will become weak and tired,
and young men will fall in exhaustion.
31 But those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.

Olivia July 7th

Today was the day Olivia had her chest closed... What a great day for us, this is really the turn around day.  We knew coming into this that Olivia had HLHS and would require surgery, but we had no idea that she would need a month for her kidneys and lungs to develop and to get strong and we didn't know she would need a surgery before her surgery. We didn't even know that her chest would be left open for a whole week after her surgery but all that is behind us now. The surgery is holding and doing its job, she is all sewen up and I think we are on the healing end of this phase of our journey.  Olivia still has a lot of healing to do, we've been told to expect it to take 8 weeks and I am not so naive to believe that there won't be a setback or two along the way but tonight I am relieved to have made it to here.
Crystal and Justus are with her now, after the surgery today Crystal could only see her for a few minutes twice, it is hard on a mommy not being able to hold and love on her baby, its impossible on a mommy not being able to even see her baby.
As soon as Olivia is extubated, hopefully tonight or tomorrow Crystal should be able to hold her again.  Ahhh the sweet mother and child reunion...

July 6th Olivia

Well if everything goes as planned Olivia will have the surgery to close her chest tomorrow.  She has finally gotten enough of the fluid off of her little body to make this possible, PTL. She should also be able to be extubated after this procedure, that will be really great, it has been seven days.  Then let the healing begin.  Crystal took a picture of her today and shared it with me. It made me cry to see my sweet little princess so swollen and  bruised. None of this seems fair.

Olivia; July 5th

Another Monday and here I am back at Ronald McDonald House.  Olivia is about the same, a little better. The doctors are really working to get the swelling off of her so they can close her chest.  Crystal says she now has some definition to her legs and arms so it must be working.  All of her numbers are a little better and they are weaning her off of things but I don't have all the info to repeat for you.  I do know she is still very "delicate" so they are going very slow with everything they are doing.

Today we got a surprise when my cousin Gayle and her daughter Tiffany stopped by for a visit. Tiffany lives down here and it was her 21st birthday yesterday so Gayle and Randy were visiting her.  It was nice to see somebody from home.  Since I forgot to get a picture of them when they were here today I'm posting one from a camping trip last year.  Camping, I can hardly wait for that this year...

I've been Lucky enough to have gone home a few weekends now but Crystal will have been here for 5 weeks tomorrow. That's a long time, we are so thankful for this place to stay.
So, not much news on Olivia tonight but as always no news is good news;
My reading today brought me to a passage on patience and I thought as I have asked all of you to be praying for Olivia please also be praying for us, I have never been a very patient person and God is really working on me, I could use your prayers, Paul put it very well in Colossians 1:9-14
 9 So we have not stopped praying for you since we first heard about you. We ask God to give you complete knowledge of his will and to give you spiritual wisdom and understanding. 10 Then the way you live will always honor and please the Lord, and your lives will produce every kind of good fruit. All the while, you will grow as you learn to know God better and better.
11 We also pray that you will be strengthened with all his glorious power so you will have all the endurance and patience you need. May you be filled with joy12 always thanking the Father. He has enabled you to share in the inheritance that belongs to his people, who live in the light. 13 For he has rescued us from the kingdom of darkness and transferred us into the Kingdom of his dear Son, 14 who purchased our freedom and forgave our sins.
Thank you again, it is good knowing we have so many standing with us.

July 3rd Rollercoaster Rides

Way back in the beginning of our Olivia journey someone (I have no idea who) told us that  having a "heart" baby is like being on a roller coaster, the highs are very high and exciting and the lows are very low and scary. The trick is for us to stay steady and focused during the ride. Hmmmm.
Olivia is one month and one day old, I thought I had this down, "not too high, slow your role, Renee." "Not too low, stay positive"...   But today we had it all, this morning I got word that Olivia was peeing!  Yeah! Yesterday she was so puffy they had to cut off her arm band, now the swelling was going  down. The surgeon is satisfied with where she is at and her oxygen is being lowered.  All good news, I was on top of the world.  No worries mate!
Then this afternoon I got a call from Crystal that Olivia was crashing, at least her blood pressure was.  Crystal went to see her and the NICU was closed we have seen this before when a baby is in trouble, The Dr's and nurses scurry, machines are pushed around and you can just feel the tension rising in the room, all the visitors are escorted out.  It has never been for Livie before. 
You know that feeling you get when your going down the really big hill on the roller coaster, that feeling when your stomach is in your mouth and you want to scream and cry but you know you just have to hold on?... That's exactly how I felt. Exactly.
My adrenaline kicked in, fight or flight?  I chose to fight the only way I know how, I called my church prayer line, my mom called her groups, I text family and friends and they text family and friends. Justus and his parents were doing the same thing.  I believe within minutes hundreds of people were praying with one purpose, Olivia.
The cardiologist has talked to Crystal, The echo cardiogram showed that the surgery is sound, they believe this to be the result of too much fluid loss too quickly (all that peeing) This can be controlled with IV fluids and less diuretics.  Thank you Jesus.
The doctors have said all along that Olivia is delicate, she needs to be treated gingerly and she likes to take things slow.
Slow and easy, that is how Mammy likes it too, in fact I hate roller coasters!

Rejoice in the Lord always. I will say it again: Rejoice: Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition with Thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Phil 4:4-7
Thank you all who prayed, have been praying and will be praying, this ride is not over yet but "The Lord is near."

July 2nd: 1 day post op

This is all of the equipment around Olivia during her early recovery. PTL for such wonderful technology to help our little Princess.

Crystal and Justus were able to visit Olivia several times today and each time Crystal says she is looking better, pinker, and pinker is better. She underwent another procedure to remove packing that had been left in, intentionally, she doesn't need that anymore and that is good. She is still having some trouble with her kidneys so please keep praying that she can get rid of the extra fluid that is making other things harder for her.

I am home now for the weekend, Auntie Kaitlyn stayed with the kids today and they had a wonderful time with her, it has been so long and they were all blessed by each others company. Baa and Papa and Auntie Kimmy also left today so now it is just the little family left at RMcDHouse. I pray that they can find some time to rest and enjoy each others company this weekend.
Crystal promises to call me tomorrow or text with any updates but in the mean time I am back at the Mom post in good old L.E. Costco is done, laundry is going, Caleb needs to be taken to a student council event, Shawn is on his way to Bible study and I think Erik and I will go to a movie. I love getting lost in action fantasy flicks so I will let you know how we like "Knight and Day" tomorrow.
Thank you friends for your constant support and prayers, I so appreciate you all.

July 1st, Surgery Day

Papa and Evangeline waiting for news......






Today was the day of Olivia's big open heart surgery, the Norwood procedure. Olivia was taken into surgery at 7am and we didn't hear back from the hospital until 3pm. Today was a long day.


Olivia tolerated her surgery well and her Dr. was able to do everything he set out to do. Now we are on the road to recovery but it is going to be a long journey.


We have known from the beginning that this is a marathon, I remember early on in the diagnosis thinking about last year when Crystal and I ran the Disney 1/2 Marathon, how we had to train at different levels and then rest in between, so we could start it all over again the next day. Today was like running a hill and tonight we have all hit our own personal walls the adrenaline is gone and we are tired but tomorrow is another day and we will go on.

Crystal and Justus were able to see Olivia for a few minutes 3 times this evening. They can't talk at her bedside because when she hears mommy's voice her blood pressure goes up. She knows Crystal is there.

As little as Olivia is she has a job to do in this race too, and that is to heal and grow stronger and for now the way to do that is to rest so tonight we will leave her to do that as we all hold her up in prayer.

June 28th

Olivia is wonderful. I was able to hold and love on her for an hour and a half today, it was so sweet.
The surgery date is official now, Thursday July 1st. This will be the big surgery that will get her on the road to recovery so we are all relieved to finaly have it scheduled... but..... it is also a very scary time for us as it is a "big" surgery for such a little girl. I am sure that Crystal will be spending as much time as possable with her in the next few days and I think she is going to try to get Evangeline in to see her too. Please keep us in your prayers.

June 25th

Every day Olivia is getting bigger and stronger, she is over 6lbs now and is off of almost everything but her heart medicine. Wednesday she will be 4 weeks old and ready for her big surgery, Crystal got the "unofficial" word this morning that the surgery should be by the end of next week. She was able to hold her for about two hours this morning and it was a very sweet time for them both, Livie is very responsive to her mommy's voice and vocalizes back. :-) It's so weird , I feel like it was yesterday that we were celebrating Memorial Day with the family at home and yet it feels like I've lived here for a year. I will head home this weekend, Saturday Justus will take the kids to a wild life encounter provided by the "Starlight Foundation" and Grandad and Nana Kessler will visit here on Sunday. Thank You All for the prayers and good wishes and not tiring of standing in the gap for us, so many prayers have already been answered in Olivia's little life, her kidneys are functioning and her lungs are working, both miracles in their own right considering how we started. PTL! I am asking again for you prayer warriors to remember us as Olivia faces this "big" surgery, I will have more details later but "The Norwood" is an extensive procedure and Olivia and the doctors will need our prayers more than ever. This week I have read and re read Luke 18, he has a lot to say about prayer and persistnce and children and healing... The chapter starts with "Then Jesus told his disciples a parable to show them that they should always pray and not give up." and the chapter ends with "When all the people saw it, they also praised God." Check it out. :-)

June 23rd

Not to much to report on little Livie, no new news on her surgery we are just in a holding pattern untill all of her numbers get lined up just right. She was off a little again today so we just wait... Crystal visits her during the days, Justus comes in the evenings, we all have dinner here at the house then mommy and daddy visit her together at night. Justus leaves early in the morning for the commute to work and we start all over again. Psalm 5:3 Listen to my voice in the morning, Lord.Each morning I bring my requests to you and wait expectantly. Today we had several people from "carmax" come to help with lunch and play with the kids, that was a lot of fun, Ezra had a great time learning about soccer and Evie loved the bubbles. Tomorrow we might go and explore Mission Bay

June 21st

Auntie Kimmy was able to see Olivia today, she and Crystal spent the morning with her while the kids and I held down the fort here at "the house". Olivia's surgeon stopped by bedside with one of his associates and explained to Crystal that after seeing the CT scan Olivia is not a candidate for the "hybrid" surgery they had been considering, she will be getting the full Norwood. He also handed the case to his associate as he is leaving the state. I guess Crystal showed a little concern in her face and Livie's nurse said "Oh don't be at all concerned, we call him Peter Perfect, he is great". :-) Well it is all in God's hands anyway so we "Trust, Pray and Obey! Olivia's numbers must be perfect for 3 days before she can have the surgery and she still has a little kidney thing going on, not much but enough to hold things off for a few more days. So she is still growing and gaining, up to 6lbs.... Everything else is status quo and that is good. Tomorrow the kids and I will go to the Del Mar fair with Kimmy and her friend, lots of fun animals to look at, it will feel good to take an outing.

June 20th

Happy Father's day to Justus and Papa and Grandad... What a wonderful day to celebrate! Today we had a houseful of guests here at RMcDHouse. Papa Erik and Uncle Caleb and Shawn and Auntie and Auntie Kim all came to celebrate Father's Day with Grandad and Nana Kessler. We had a wonderful chicken dinner with lots of love and hugs for everybody. Ezra and Evie were sooo excited to see Auntie after almost 3 weeks... It was great to see all the kids after another long week, we are so blessed to have this house, we were all able to sit around a table and catch up just like at home. The only thing missing was Olivia Children's children are a crown to the aged, and parents are the pride of their children Justus took Nana and Grandad to go see Olivia and of course it was "more love at first sight". The NICU is not a fun place to visit but the peanut princess is doing well considering and it is a joy to just touch her. Later this afternoon after everybody left (except Kimmy who is staying for a couple of days again), I was able to join Crystal at Livie's bedside, it is amazing how she follows her mommy's voice with her eyes. Her heart Dr. stopped by and confirmed that he and the whole team will be looking at the CT scan this week so we will be getting answers.

June 19th

Well after a long morning of waiting Crystal and Justus had an extensive meeting with the neonatoligst. The CT scan answered a lot of questions, Livie is doing well..... Yes her one problem is her heart. Her kidneys and lungs are up to speed, and some of the other problems that they thought she might have, have been ruled out!! I am shouting Praise The Lord. This baby girl has been held in constant prayer for all of her 18 days with us and I refuse not to give God all the Glory... We love you RADY Children's and Drs and nurses but God is our ultimate healer. There will be another meeting on Thursday with the whole heart team to discuss the plans for her heart but in the mean time she is growing and gaining and capturing the hearts of so many. We Love you Olivia Faith!! This afternoon Crystal and Justus have left with Ezra and Evangeline to see Toy Story 3 and have some real family time with a big burden off of thier shoulders. I am on my way to see my littlest one. Thank you prayer warriors, thank you friends and family... I pray the rest of your weekend is Blessed!!!

June 18th

Olivia came throug the CT scan and is still sleeping it off. She is intubated but the nurses think that should come out sometime tonight. Mom and Dad are with her again now and another day bites the dust. The Dr meeting we thought would happen today didn't, it was rescheduled for tomorrow AM so the CT results will be available. Finaly some news... Tomorrow will also be a big day for Ezra and Evie as Mommy and Daddy are taking them to see Toy Story 3!!! Yea!!! I will stay with Miss Peanut... Yea!! :-) Sunday is Fathers day and we will be doing it up big with both sides coming together at the house for a chicken dinner picnic thanks to Nana Kessler. What a treat, I can hardly wait.

June 17th

Another day ticked off the clock.... I was able to see Livie again but no holding today, alot of what goes on depends on her nurse for the day, but just sitting by her and loving her was wonderful. She opened her eyes a lot and did some regular newborn gurnts and stretches. Its amazing what we take for granted. She loves to have her little hands held and rubbed and to be sung to. Her feeds are being increased steadily and she is tolerating the breastmilk well , she is growing and gaining, just like a baby should. :-) Tomorrow afternoon after the medical meeting I am hoping we have more info on the surgery but for now its just love her and wait and pray. Tonight they had a big screen set up in the dinning room with the Laker game on and were serving lasagna for dinner, both Crystal and I are lactose intolerant and don't do basketball so we took the kids and left the house for a little while and had a Denny's dinner, good ole Denny's, great food, good prices and always friendly service. It was nice. After a quick trip to Food 4 Less for a few snacky and breakfast items its back to the house for baths and Crystal's last visit to Olivia for the night. Tomorrow's another day....

June 16th PM My Birthday Present!

Olivia is wonderful, yes I was able to see and hold her today and it was amazing.she peeked one little eye at me when I first spoke to her then went so peacefully to sleep as I touched, kissed, spoke to and even sang to this wonderful little peanut princess. Her heart rate stayed slow and steady and she was so peacefully asleep when we left she didn't cry when I had to put her down. It was an amazing time for me..
Ezra was also able to see her today, Crystal and he met with a child/family advocate provided by the hospital to "get him ready" for all he saw. the advocate was great, they had a doll with the same tubes as Livie that he got to hold, then they took a polaroid picture of Olivia that he watched develope, they had pictures of all the machines he would see, he was very prepared when he went in with mommy and he was amazing, he was not frightened at all and he has decided to be a Dr to make people better and when he asked about a machine and was told that was Olivia's medicine he said "well I will push the buttons more so she gets better faster". He had to leave after that! Ahahahahaha...... Crystal and Justus will be meeting with the Drs again this Friday so we will get surgery news at that time, I hope, but in the mean time she is growing and gaining weight just like they want her to, she is almost back up to birth weight at 5lbs. Today was a good day.