Friday, July 30, 2010
July 30th Happy Birthday Baa!
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.
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.
Friday, July 9, 2010
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 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.
Wednesday, July 7, 2010
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...
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...
Earthquake
Well today we had another good sized earthquake here in southern Cal. 5.9 centered not far from here in Borrego Springs. Definitely an eye opener but such a funny story to go with it.
Ezra and I were sitting on the bed watching the movie "Good Boy" it starts with a space ship landing and the boy hero thinking there was an earthquake. Ezra wants to know "what was that?" I answer an earthquake and Crystal explains "Ezra probably doesn't know what that is, he's never really felt a big one. " Not two minutes later Ezra got to feel a BIG one. Hahahaha
The Ronald McDonald House sits on top of a six story parking garage that was built with earthquakes in mind I'm sure, this place sways like a hammock. We had a good sized quake last month but it wasn't as loud or as shaky as this one and the kids were sleeping.
During today's quake we saw people scatter like bugs outside our window, some of the Hawaiians that are staying here went running and we laughed that they were probably waiting for the volcano, wrong thing to say in front of Ezra, now he is convinced "a volcano is coming".
Anyway, all is well and now we have something fun to talk about.
Ezra and I were sitting on the bed watching the movie "Good Boy" it starts with a space ship landing and the boy hero thinking there was an earthquake. Ezra wants to know "what was that?" I answer an earthquake and Crystal explains "Ezra probably doesn't know what that is, he's never really felt a big one. " Not two minutes later Ezra got to feel a BIG one. Hahahaha
The Ronald McDonald House sits on top of a six story parking garage that was built with earthquakes in mind I'm sure, this place sways like a hammock. We had a good sized quake last month but it wasn't as loud or as shaky as this one and the kids were sleeping.
During today's quake we saw people scatter like bugs outside our window, some of the Hawaiians that are staying here went running and we laughed that they were probably waiting for the volcano, wrong thing to say in front of Ezra, now he is convinced "a volcano is coming".
Anyway, all is well and now we have something fun to talk about.
Tuesday, July 6, 2010
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.
Monday, July 5, 2010
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.
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.
Saturday, July 3, 2010
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."
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."
Friday, July 2, 2010
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.
Thursday, July 1, 2010
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.
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