Run with Endurance

One Year Ago Today...

2011-09-11T09:24:00.000-07:00

One year ago today our lives were changed forever. You see, yesterday, September 10th, 2011, would have been Endurance's first birthday. Hurrah!!! Yet, a year ago today we were told he had a congenital heart defect. When something like this is told to you of your one day old baby, the first thought, as mine was, might be, "What? This only happens to those 'other people' who are more prepared, more mature, and can handle stuff like this!" In our time at the hospital this past year, I asked many parents their feelings about when they were "told." All answers were the same as mine. Yet, God is sovereign in everything. EVERYTHING!!!! I can be the weakest and He will take care of me. Oh I'm so glad He has!

I haven't written much since Endurance went to Heaven, but I did want to write on his birthday. I cannot find anything more appropriate than this beautiful poem written by a young man at our church after Endurance passed away. And also appropriate for Believers on the 10th anniversary of the terrorists attack on the U.S. Here it is....

ENDURANCE

Though your days be dark and clouded,

Eyes red with grief and crying;

Life with pain and suffering shrouded,

To move through life you are trying.

Wishing to forget because of the pain,

Wishing not to because of the memories;

At Christ's feet shed tears are lain.

You may feel helpless and full of grief;

Dark and angry clouds covering your sky,

Searching for a sign of hope and relief,

To get by on your own strength you may try;

An effort such as that will only fail,

To find hope you have but to look to Christ,

He will carry and guide you along your trail.

Your look on life do not let this mar;

For earth is but a temporary place,

He who yo have lost is not lost and not far.

On Christ's knee gazing into His smiling face,

Those that see Christ's glorious face are few,

You sometime may be chosen to follow;

Then in Christ's face will gaze he and you.

Written by Joshua Booy, 15, for the Holston Family

God bless all of you! ~Heather, for the Holston Family

2011-06-22T20:40:00.000-07:00

I do not know blog etiquette, when I should stop Endurance's blog. If anyone does, feel free to comment.

I had said previously that I would tell you about the passing of Endurance. I'll do my best, in the short time I have...

The morning of Endurance's surgery was exciting! We spoke again with Dr. Galantowicz, and then prayed for him. Endurance was awake and ready! I held his little hands which both had splints on them holding in IV lines. I put my forehead on his and told him I loved him and that he was going to do great! I told him I loved him...

That day we had so many visitors I am still thanking God for all of the brothers and sisters that took their time to drive to Columbus just for our family! We were truly blessed by all of the fellowship.

Endurance's surgery went quite well. It took longer than expected, as Dr. Galantowicz had to put a stent in Endurance's pulmonary artery, but everything went well. Dr. Galantowicz came out and saw me first, away from the rest of our group, smiled, put his arm around me and said "let's go!" He told us all how the surgery went. He told us that Endurance "flew off the heart-lung bypass machine" (he knew we were told he'd never get off of it, so he made sure we knew Endurance had with flying colors!!) He gave us pictures. Wow! What a difference of before and after the surgery! God is amazing how He has given certain people this gift. He said we needed to watch out for the next 24 hours, as they are the worst...

Once Endurance was back in his room, Mike and I zoomed up to see him. Most people new to looking at post-op patients might think what we saw was gruesome. But I didn't. Yes, Endurance's chest was open, yet covered with gauze. There was a lot of blood, wires, tubing, and so much more, but Endurance had made it through! He was alive! He was at a point where the surgeon in Seattle said he would never get to. I just stood there in amazement to see where God had us. Thank you God!!!

Mike went and got some of our visitors, now close friends, to see Endurance and pray for him. After they were gone, I went back one more time to kiss him goodnight and tell him that he made it, he did such a good job, and that I was so proud of him!! That I loved him.

Mike took us home and then went back to the hospital for the night. He said the doctors would call Dr. Galantowicz with updates and concerns. Around 3:30 am Dr. Galantowicz came to the hospital to tend to Endurance himself. He talked to Mike quite a bit. He said they might have to put Endurance on the ECMO machine, which we all had agreed not to put him on directly after his surgery. Dr. Galantowicz said that this was different. Endurance was spiraling down, and he said that if Endurance was put on ECMO, even for just a day or two to give his heart a break, he should pull out of this. Dr. Galantowicz said Endurance was okay for the time being, that they would continue checking his gases every thirty minutes. Mike called me at about 5:30 am to say he was coming to pick me up and bring me to the hospital. He'd told me some of what they've spoken about. I was in full agreement with whatever the doctor said.

Mike called from the cell on our way back to the hospital at 6:30am to check on Endurance and they said he was stable still. We walked in at 6:51 am and they were in the middle of giving Endurance chest compressions, bagging air into his breathing tube, giving him a lot of different drugs, and taking lab tests. They said they'd been doing it for the past 5 or 10 minutes. What? Dr. Galantowicz came over and said that Endurance went downhill quite quickly. There had been no time for the ECMO.

Endurance's room was FULL of doctors and nurses. They had opened his room's huge sliding door. The outside of his room was full of doctors and nurses. I stood outside his room, and a sweet nurse named Nikalia came and put her arm around me and asked if there was anything she could do. I said "pray." She told me she was. Mike motioned for me to come into Endurance's room and stand with him and Dr. Galantowicz. Everyone was working so hard on Endurance. Taking turns compressing his chest. This was hard work they were doing. A cardiologist would take a turn, then a nurse, followed by an interventionalist. Everyone was doing their absolute best for Endurance. Dr. Galantowicz was in complete charge of everyone there. Like a captain of a ship. It was amazing to watch. At one point, Dr. Galantowicz's eyes were closed and I truly believe even he was praying. I was praying that God's will would be done and that no matter what, He would be glorified.

We talked to Dr. Galantowicz again. Mike said he wished he would've just told him to put Endurance on ECMO right then, before he left the hospital to pick me up. Second guessing decisions, etc. What Dr. Galantowicz said is exactly what we needed to hear..."Don't beat yourself up. There's a higher force at work here than us." Yes God, we surrender to you again.

As the minutes passed, Dr. Galantowicz turned to us and said they'd try one more "circuit" of meds, labs, and compressions. After that, the doctor had everyone stop. They watched for a minute to see if Endurance's heart would kick in on its own. I really thought this would be when God would show everyone in that room how powerful He is, you know, last minute when everyone else says it's impossible, and God brings Endurance around to "stable" again. No, this time Dr. Galantowicz turned around to us and put his arms around Mike and I and said that he was sorry. Just like that. That was at 7:15 am. Endurance passed onto a better life.

The machines were turned off. The noises stopped. People started leaving Endurance's room. His nurse for the day, Sarah, came over and gave me a hug. She was wonderful in the short time Endurance had her. She went to bat for him every time he was her patient. I'm glad she was there the last day. Then Sarah and another nurse cleaned up the huge mess of mess. They clean Endurance's bed. They clean Endurance's body. She wrapped him in his blanket and let me hold him. For the first time since he was one day old, I got to hold Endurance in a quiet room, with no tubing, machinery, and the like. I looked at Mike and in loud tears, I said, "I'm holding his body. He's in Heaven." What a strange joy I felt. I cannot explain it.

Proverbs 3:5-6
Trust in the LORD with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.

So, now our family is temporarily living in a house in a small town called Steilacoom, WA. We don't know where God is going to lead us on our next adventure. We've gotten rid of most of our belongings, but still need to get rid of more. Material items just don't mean as much as they used to, even when they didn't seem to mean that much.

We've really appreciated all of your prayers, encouraging words and comments. People we don't even know (yet!) have let us know they've prayed for Endurance and our family. God, again, is just so good.

I hope this wasn't inappropriate to write in this blog. I can say a whole lot more, but I really just want to say that this is God's will and although it hurts terribly that Endurance is no longer here, God's will was for him to be with Him. I'm assured of this. Again, I'm not sure how and if I should end this blog. But, maybe I'll just put pictures of Endurance and our family a couple more times? I'm unsure at the moment :)

Memorial Bulletin

2011-06-13T17:47:00.000-07:00

Here is the bulletin from Endurance's memorial. Here's something amazing.....when the printers saw what the bulletin was for, they didn't charge for the printing! God is so good!! I'm sorry if it's small. If you click on the picture, I'm told it will enlarge. I will put some pictures from the memorial if you don't mind on another posting. God bless!!

Links to the slideshows from Endurance's Memorial

2011-06-04T22:06:00.000-07:00

Two slideshows were played at Endurance's memorial today, as well as a video. The slideshows can be viewed here, and here.

Here is a link to the memorial video, thanks to Sam Young for editing and posting it.

Blessings,
Letricia Hatch

Memorial for Endurance, Saturday, June 4th, 2011 at 12:00pm

2011-06-03T12:05:00.000-07:00

Dear Friends and Family,

Tomorrow we will celebrate Endurance's journey to be with our Lord Jesus. Please join us from 12 - 3pm at Evergreen Bible Chapel in Federal Way. Here's the tentative schedule:

12:00-1:00 Memorial Service

1:00-2:30 Reception, with plenty of refreshments. There will be an open mic if you'd like to share something.

2:30-3:00 Clean Up

3:30 A short graveside service at Evergreen Memorial Park in Enumclaw. Directions will be provided at the memorial.

All are welcome to come. The Holstons look forward to seeing you all and appreciate your prayers, calls and love.

Blessings,

Letricia Hatch for the Holstons

A short note...

2011-05-29T23:07:00.000-07:00

Dear, dear brothers and sisters,

We are driving home slower than the 46 hours it took to get to Ohio. It's giving us a time to think, cry, make decisions, cry, and see God's beautiful country. And cry a bit more.

Isn't God great no matter what the situation?

I really want to tell you about Endurance's surgery and his last morning on earth, but for now I will just let you know that we will be having a memorial service in the Seattle area, somewhere, on Saturday (June 4th).

May God receive every ounce of glory for the mighty works He has done, and is doing!!!!

Heather, for the Holston Family

He Ran the Race with Endurance

2011-05-25T10:09:00.001-07:00

Dear friends of Endurance,

Endurance passed away this morning. His heart stopped and the doctors were not able to get it started again after half an hour of trying.

Thank you all for your many hours of prayers and fasting, for your visits and calls and e-mails and gifts, and countless other expressions of love, encouragement and blessings to the Holstons. I know you will continue to show your love to them in the days ahead.

Please continue to pray for the Holston family that God may uphold them in this time.

We praise God for this Beautiful Life that touched so many and give thanks to God for His will.

"Give thanks in all circumstances; for this is the will of God in Christ Jesus for you."
1 Thessalonians 5:18

Brad Petersen
For the Holston Family

Surgery updates. May 24

2011-05-25T09:41:00.000-07:00

Update #1

Endurance went into the operating room at 7:30 est this morning. It is now 9:10 am and we've just gotten our first update...

The anesthesiologists have given Endurance a new breathing tube in his left nostril now. This is by request of the ICU team since the other one had been in his right nostril for over three months and kept growing colonies of bacteria.

Also, Dr. Galantowicz has opened Endurance's chest already and his heart handled it very well! On his last surgery, as Endurance's chest was being opened, his heart stopped. Praise God this did not happen again!!!

Update #2

Endurance's pulmonary bands are off!!! Dr. Galantowicz is now working on Endurance's aortic arch, which is the largest part of this operation. May God's name be glorified!!!

We had two visitors this morning who drove over three hours away from the south/east part of Ohio. He's a preacher in West Virginia!

Update #3

Things are going quite well! The tricuspid valve has been repaired. They are re-warming Endurance now, which they had to completely cool him for the surgery. This means to us (Mike and Heather) that they are almost finished!

We now ask for prayer for this.....Dr. Galantowicz will take Endurance off of his heart/lung bypass machine when he's completely finished. This will tell the doctor if Endurance's heart will tolerate being on it's own. If his heart doesn't accept not being off of the machine (which Seattle told us he'd never survive off of this), Dr. Galantowicz will put him back on for one hour. If he can't come off, Endurance will basically pass away there. He's in God's hands. May it please Him to have Endurance survive on his own.

Update #4

At 4:15 one of Dr. Galantowicz's assistants came out and said everything seemed to be going well. They were planning on putting a "patch" on Endurance's pulmonary artery, but it wasn't working so they were intending on putting in a stent. He was bleeding a lot, but she said this is normal in "hybrid" babies. She pretty much sounded like things would be almost done within the hour. We have not heard anything else since then...

So, we are all still waiting for another update. We still are thanking you for your continued prayers!

P.S. God has blessed us with so many visitors! We're meeting new friends every day here it seems.

Update #5

Endurance's bleeding has decreased dramatically and his heart pacing is well under control. The remaining challenge will be the ventilation, which needs to be reduced as soon as possible.

Endurance will be heavily sedated for a couple of days, as well as on "vec" which paralyzes him. His crib is full of tubes, wires, and machinery, and his chest is open (covered with sterile gauze) to help quicken his recovery, yet he's alive!!!!! God has spared his life through this surgery!

Thank you for praying throughout the day, as well as many days in the past. Endurance will need a lot of prayer the next coming days.

Dr. Galantowicz said he'll be in everyday to check in on Endurance and us. Thank you for praying for him too! And yes, I gave him a huge hug when he came out of the operating room to talk to us!

Update #6

Please pray for Endurance! We were called in early this morning (6 am) due to complications.

Specifics will be sent later through updates.....

He just isn't doing well at all.....

These updates were received by my mom from Aunt Heather.

Brad Petersen

for the Holston Family

Surgery tomorrow!!!

2011-05-23T08:39:00.000-07:00

Endurance's surgery is TOMORROW (Huzzah!!!) and we're asking for prayer! May it please the Lord to have Endurance's surgery go well! As I write this, Endurance is having another echocardiogram so the doctors will have the most recent picture of his heart. Also, his right lung is more "foggy" than yesterday, which could mean a lot of things (position, another infection?, he needed suctioned, etc.) so please continue to pray that his pneumonia will be completely healed! They want his lungs to be optimum for the surgery.

If you click on this link: Comprehensive Stage II you will be able to read (page 5) about Endurance's "Hybrid procedure" that he had back in September 2010. Starting on page 6, it describes the comprehensive stage II, the surgery that Dr. Galantowicz will be doing tomorrow. Endurance does not have hypoplastic left heart syndrome, but that's what he's being treated as. His left ventricle actually works a bit. He, as we all know, is a case of his own! He's not the typical "hybrid" baby either. Also, another complicated procedure the doctor will be performing on Endurance tomorrow is to repair his tricuspid valve so it doesn't leak as much. His leaks severely.

I need to say THANK YOU to the visitors we've had already here in Ohio! Even yesterday we had three families visit from the same church, who drove over an hour to encourage us, meet Endurance, and pray for us. What an absolute blessing from God! And we've had others as well! Thank you! We are so thankful to God for showing us how the body of Christ comes together. I am greatly humbled. I am excited for Heaven!

Thank you for the ecards that have been sent to Endurance. My heart swells up with tears as I read each one and tape it up in Endurance's room.

We will post as much as possible to keep you updated on Endurance. Oh, he will start the process of his surgery tomorrow morning around 8:00 am est (that's three hours ahead to our Washington/California brothers and sisters!!!) :), and the surgery, if all goes as planned, will begin closely to 9:00. We will all be here. Please pray. Please call if you want!

The Three Blind Mice "watch him all day":)

Update for Endurance

2011-05-18T16:16:00.000-07:00

The following post is the prayer update I just emailed our church. One thing I need to add though is that Nationwide Children's Hospital provides the opportunity for friends and family to send ecards to patients and then they get delivered every morning in the special "mail." Will you please send Endurance one, or many? You can do it as often as you like! The info that you need is his name, unit, and room number (Endurance Holston, CTICU, rm#7). Here's the link: send ecard Thank you!

***********************************************
5-18-2011 update:

Endurance has had some setbacks this week since his arrival here in Ohio. Endurance has pneumonia. He was already on antibiotics for a different infection, so they've added a couple more. Once the test comes back as to which type of pneumonia it is, they will get more specific with antibiotics and take off the unnecessary ones. They have his crib mattress at a 30 degree angle to help his lungs. Also he lays on his stomach for 24 hours and then on to his sides for another 24 hours, switching sides every 2 hours. And lots of suctioning through his breathing tube!

We want to let you know that Endurance's surgery is scheduled for next Tuesday morning. The surgery will take 6 - 8 hours. Mike and I spoke with Dr. Galantowicz again today for quite a while. He says that speaking to his team again (they do this daily, with more intense meetings about each cardiac patient on Wednesdays and Fridays), they are encouraged with how Endurance is doing and how the surgery will go. Although he's had some setbacks, they really have nothing to do with his heart function which they're happy about.

Dr. Galantowicz drew out for us what Endurance's heart and lungs look like and what he will be doing. He then explained to us that he goes over in his head, thoroughly about 10 times, how he's going to do a specific surgery on each patient. He's said he's gone through Endurance's surgery 6 times so far and the last two have been phenomenal! Mike and I broke out laughing when he said this. I had to tell you.

We ask for specific prayer regarding Endurance's pneumonia to progressively get better, and for Endurance to stay stable. On a lesser note, our van is in great need of prayer, but God got the family to Columbus!

Thank you for praying through many seasons for Endurance! May God continue to be glorified through this little boy!

Columbus Ohio!

2011-05-17T13:26:00.000-07:00

Whew! It has taken me several days to post this. We're here! Oh thank you Lord for blessing Endurance and our family with this opportunity!

Endurance arrived safely in Columbus last Wednesday. (I am hoping to post pictures of Endurance's learjet trip!) They expected him to have a meltdown upon arrival to the hospital, which he did. It took a couple of days, but he made a comeback. Now they've been switching medications, turning some off, adding new ones. They have been quite aggressive here, which is reassuring to Mike and I.

Endurance had a CT scan and an MRI yesterday. They did not find anything to stop his surgery, Praise God!!!

We are presently staying at a hotel 6 miles away that accommodates the eight of us. I figure out each morning who will go with us and who stays behind. This hospital is a bit different with siblings...no one under 12 can come into Endurance's room. This has been quite an adjustment for David (10) and Elijah (8), who were used to coming and performing "shows" at Endurance's bedside, with his mice and other creatures. They will not get to see him until he is well enough to go to the cardiac "floor."

Endurance has had many, many in-hospital visitors! A speech therapist (I'll explain later), massage therapist, physical therapist, urologist, hemotologist, and a neurologist. And that's just today! One interesting thing that the hemotologist said, is that she is from Nigeria and the name "Endurance" is quite popular there! Wow!

The "visitor" Mike and I have been the most grateful to meet is Dr. Galantowicz, the surgeon who will perform Endurance's surgery! A very pleasant and humble man. He has come by several times and has stated that his team is quite confident that Endurance's surgery will go well. We are unsure when this surgery will be, yet the surgeon said as soon as possible. Endurance will tell us, so to speak.

We rest in His care and are so grateful that He is in control. Thank you for your prayers!

On to our Next Adventure!

2011-05-09T01:50:00.000-07:00

Everything is going on so briskly around here lately! This will be a quick update as it is 2:00am and I'm a bit tired....

Endurance has beat the odds again is is practically recovered from his virus and two infections. He is breathing on his regular ventilator at regular settings. All other machines and gas tanks have been put away again!!! Thank you God! I am at the hospital right now and just came out of his room. He is back to holding his mouse's paw and feeling his blanket for comfort.

Columbus here we come! As of last Friday, the ICU is setting Tuesday as the transport day to Columbus Ohio, Nationwide Children's Hospital! Yahoo! I will be going on the ambulance lear jet with him. Please pray for my nervousness to subside.

It took two days, yet with very loving brothers and sisters we have emptied our home here in Seattle. Lots of runs to the thrift store to joyfully make donations!!! Lots of trips to a small storage unit with just bare necessaties. And our friend will be taking one or two trips to the dump for us with the rest. God is good! I've seen my children grow in just this experience alone. Their brother means more to them than their material objects. Oh thank you Lord for this lesson.

Mike and Endurance's seven excited siblings will be leaving early tomorrow (or should I say in a couple of hours) for their trek through the northern states and Lord willing, arrive in Columbus sometime on Wednesday. Please pray for safe travels in a very stuffed van!

We're not exactly sure about lodgings yet, and again I'm thankful that God knows exactly every detail already.

Thank you for your prayers. I wish I could tell you all face to face how much the Holston's appreciate each one of you and your prayers. May God bless you this week!!!!

~Heather, for the Holstons

Prayers Needed

2011-05-02T12:28:00.000-07:00

Endurance came down with a virus last week which is a common cold to us healthy folk, yet can be tremendous to someone with a compromised immune system. Back in isolation!!! He also has tracheitis which was found on Friday. His lungs stopped ventilating the CO2 out, and they had to put him on a different ventilator in order to keep him alive this weekend. This is the last thing they said they can do to help him. The nurses have been getting plenty of secretions out of his lungs since he's been on this new ventilator, which has helped greatly. It's amazing to watch this machine. It's giving him 660 breaths a minute and therefore vibrates him. It's quite loud and sounds like a model T Ford.

This morning one of his doctors said that saying that Endurance is "stabile" is an overshot. But he has not gotten any worse either since Saturday. We thank God for this so much!
Please pray that we can quickly get him off of this oscillating ventilator, as Endurance has to be completely paralyzed the entire time he is on it.

On top of this, Friday and Saturday was our statewide Christian Heritage Home School - Family Discipleship Conference. God is amazing to have made it possible for us to go to most of it. We were truly, truly blessed by the sessions, even though we had to leave early and rush back to the hospital Saturday afternoon. God has blessed us with amazing brothers and sisters in Christ that after finding out our situation, packed their families up (meaning leaving the conference early too), came to the hospital, blessed us with dinner and fellowship, and watched our children so we could be back with Endurance. Thank you!!!

Our entire family is blessed by all of your prayers and encouragment as we continue on this race!

Endurance is Leaving Seattle!

2011-04-26T21:44:00.000-07:00

Dear praying loved ones,

Mike sent this wonderful update regarding Endurance to our church and I cannot think of anything more to add except my deepest appreciation for the same two doctors Mike already has, Dr. Lewis-Newby and Dr. McQuinn. God has used them mightily! Huzzah!

**************************************

From Mike, April 26, 2011...

Dear Brothers and Sisters in Christ,

Today we are praising our Saviour!

On February 2nd they were telling us to remove life support.

That Endurance was not happy. He didn't want to be

reintubated, they said. He wasn't comfortable. He could

die in the intubation process. Just let him go 'peaceably.'

Now we will be flying out of Boeing Airfield on a Med-Jet.

To go to Nationwide Children's Hospital in Columbus, OH.

Both Dr. Galantowicz in OH and Dr. Burke in Miami are both

willing and able to conduct the needed surgery for Endurance.

What a difference. Instead of having to decide to let him die

or to reintubate, now we had to make the really difficult

decision of which surgeon to send Endurance to!

Both of these gentlemen are top tier. And their teams are also.

Heather and I are indebted to these two teams for accepting

Endurance, when fourteen others said 'No,' five others haven't

got around to presenting him yet, and one other said he'd do 1/2.

Columbus is only a 4 hour flight for Endurance, rather than

six to Miami. Time in the air while intubated is crucial. The

team here is saying that if a miracle worker [like Burke] fell

out of the sky and said, "I'll do it!" (which is what Dr. Burke

did!), and Dr. Galantowicz was the other option, they would

still go to Galantowicz simply based on the number of times

he's done this exact surgery. Babies come to him from

around the world for this surgery. He created the Stage One

Hybrid that is used around the world today.

I might add, we are also indebted to the fine staff here at

Seattle Children's. If it wasn't for Gordon Cohen and Tom

Jones doing the Hybrid, and the amazing Cardiologists,

both regular and Interventionalists, the attending Intensivists,

the jolly good 'fellows,' the nurses and RT's, the nutritionists,

pharmacists and PACT team members, and yes, even the

Ethics Committee members - if not for these blessings from

God, Endurance may not be alive today. And a special

note of thanks to Dr. Tim McQuinn, who helped me when

everyone else in this building gave up on us. And to Dr.

Lewis-Newby, who had the dream about Endurance and

came in the next day and started things moving.

God is so good! We still have some bureaucratic red tape to cut through that may take another 3 days to 2 weeks before we

leave, but it's happening, the Lord Willing! Now, we will be

making all of the various logistical decisions regarding who goes, who stays, if any, how do we get there, do we sell this 9 mpg van and get a cheaper one for the drive, do we keep a house here vacant during a potentially long recovery... ??? We figure if the Lord can take care of the Big stuff, the little things will all work out!

Thank you for all your prayers along this way we've come.

For Christ and His Kingdom,

Mike & Heather Holston, for all the Holstons;

Isaiah, Sarah, Hannah, David, Elijah, Noah, Faith, and Endurance

"And Elisha prayed, and said, LORD, I pray thee, open his eyes,

that he may see. And the LORD opened the eyes of the young

man; and he saw: and, behold, the mountain was full of horses

and chariots of fire round about Elisha."

II Kings 6:17

In the Waiting Pattern

2011-04-19T15:20:00.000-07:00

I just wanted to quickly update y'all...

Last Friday Oregon Children's Hospital called Mike and told him "no" to our request for Endurance's surgery.

Tomorrow Stanford Children's will be presenting Endurance to their team and hopefully we will know their answer shortly.

The Columbus OH surgeon had a few more questions regarding Endurance's overall health. We asked a specific doctor here to talk with him directly, then this surgeon will re-present Endurance to his team either tomorrow or Friday.

We are still awaiting answers from other hospitals as well.

Behind the scenes we've been meeting with a quaint woman who is now going to play a heavy part in Endurance's departure here from Seattle. She has all of the paperwork filled out except the "hospital transferring to" line! We've had doctors bending over backwards to help Endurance.

This is slowly becoming a reality to me. If Endurance makes it through these high-risk procedures, he actually will be coming home! We're not sure where "home" will be. I can't think that far ahead! There are so many unanswered questions about so much that it can be quite overwhelming. I am elated that God is in control of everything and I can cast all my cares on Him.

Please continue to pray for our family. We really appreciate your prayers!!!!

Looking Brighter

2011-04-14T16:44:00.000-07:00

It is a gray, rainy, spring day in Washington. But it's only what you think of it, right? Because we're quite happy here! Why? A couple of reasons....

Endurance has his first tooth! It was discovered quite by accident. He needed suctioned, something that we're allowed to do, which is basically the same as being at the dentist and having someone put that vacuum-like tube in your mouth to clean it. Well, I was cleaning his mouth out and this white thing wouldn't get off of his gum. Hence, I felt it and got a surprise!!! Sometimes I forget that while he's living in the ICU, he's still a baby and I should except baby things! So now when he's crying or agitated, we have to add "possible teething" on his list.

Next item...

So far, Endurance has two teams of surgeons that would be honored to perform his Comprehensive Stage II surgery! Yahoo!!!! The Children's hospitals in Florida and Ohio have both said yes! We're still waiting on other hospitals' responses. Some have come back saying no. Portland OR will present Endurance tomorrow morning to their group of cardiac specialists. Stanford Children's (CA) will do the same next Wednesday, Lord willing.

God is so good. I cannot thank Him enough for using Mike in so many ways to talk directly with all of these surgeons, regarding Endurance. Some have even called us at home in the evenings. I always thought that you couldn't talk directly to these surgeons, as if they were too busy sitting on a pedestal or something. God has shown me not to misjudge people.

Our family asks for prayer for guidance in so many decisions that will be made even as soon as tomorrow. May God be glorified in every word spoken, decision made, and detail regarding Endurance. Thank you!!!

2011-04-08T13:57:00.000-07:00

Endurance's pulse can be faintly heard in his right foot now. Thank you for your prayers! Yesterday he did not have a good day. He slept pretty much throughout the day. His saturations were low, heart rate high, even while sleeping, and temperature high. His coloring also was a dusty grayish type of color. So they have took blood cultures to see if he is brewing some sort of an infection again. Also he had a blood transfusion to see if this would help, which it did. His blood count was lower than usual.

Today he is doing much better, but the doctors wanted more blood cultures taken and a urine sample to be taken. They don't think he looks like his usual self.

We have sent out the reports to the surgeons that wanted more information and are now waiting.

Thank you again for your prayers,

Heather

Psalm 33:20...Our soul waits for the LORD; He is our help and our shield.

2011-04-06T14:03:00.000-07:00

Endurance had a cardiac catherization procedure this morning. All went well. He is back in his room right now recovering from the anethesia. This procedure's results will give the information that various surgeons have requested of Mike, who has been speaking with them back and forth these past couple of weeks.

I do ask for prayer for Endurance. His upper right leg is where the doctor went in to do this procedure, and now they are unable to find a pulse in his leg. He has had these interventional procedures before and the second one, I believe, is where he obtained a blood clot in his left leg (and has been on Enoxaparin ever since). His right leg is also where his picc line is running through.

Thank you for your continued prayers for Endurance. We so appreciate your love and encouragement.

P.S. We were blessed with a really good nurse in preparation for today. She requested to be Endurance's nurse! Thank you Genevieve!

Some recent Pictures

2011-03-30T22:10:00.000-07:00

Sarah and David were having fun with the camera again...

Endurance enjoying a good day. He's trying to suck his thumb that's always hiding in his fist!

He's holding onto his little mouse friend's paw. He loves these mice! Endurance and his mice have stirred up many a conversation between doctors, nurses, and RT's. We're looking for one more so they can become the three blind mice group.

This necklace has a story of it's own...

I saw a poster in the oncology department here at the hospital when David and I were went exploring back in November. The organization promoting the poster is called Beads of Change. How it works is a patient (cancer and cardiac) can sign up for a necklace and everytime they receive a certain treatment or go through something like a surgery, have a blood transfusion, ICU stay, etc; they receive a special glass bead that corresponds to the procedure listed on a chart. The beads add up and a necklace is formed during a lengthy hospital stay.

So about six weeks ago I asked Wendy from the Child Life dept. if Endurance could get something through the Beads of Change, as I went on their website and Seattle Children's does it, and is the only one in WA that does. She said she'd find out for me. She came back later to say that Children's actually only does this for the cancer patients, but she could figure something out for Endurance. This got back to an oncology nurse who put this together with Wendy. Wendy told her what she knew of what Endurance had gone through and they found the corresponding beads to tell his "story." She even added two glow-in-the-dark beads for radiation treatments, "just because they're pretty and he'll like them," she said. (They're the ones two beads away from both sides of his name).

The above necklace is what Wendy brought to Endurance a couple of weeks ago. For just guessing, she did pretty well. I cried and gave her a huge hug! The only thing is, the oncology nurse that helped Wendy do this said that since they only do cancer patients here, not to let everyone know about what she did for Endurance. So keep this to yourselves please! Ha! :) We will need to do the rest on our own. We'll have to add about 30 more beads and we'll be caught up to date! I'd love to finish it off with a purple heart, which if I can remember correctly, it means that treatment is all finished! Only God knows even the length of this necklace.

Thank you for letting me share this. ~heather

Endurance's Poem

2011-03-24T11:40:00.000-07:00

I wanted to share with you a poem Hannah (12) wrote to me yesterday!

E is for Elijah, who gives Endurance shows;
N is for "Nice and slow," when he wiggles his tiny toes.
D is for Dilaudid, which he gets when he's fussy,
U is for Uncombed, when his hair is awfully messy.
R is for Race, with him we're running fast!
A is for "Ahhh," when I reach his room at last.
N is for Nice and Neat, he's as cute as can be,
C is for Cute, when he looks up at me!
E is for Endurance, who loves his Mama such, but she loves him even more; she loves him very much!

This sure cheered me up!

Last night our nurse asked if we would give him permission to have Endurance put on his mother's prayer group list back in Georgia! He said he did this on occasion and knew that we believed in prayer. What a blessing it was to talk with him about God's will and sovereignty!

Please pray as Mike fervently seeks several second opinions throughout the U.S. on surgical options for Endurance. He's spoken with many doctors and has sent out several pkgs with Endurance's reports and echocardiograms on cds. I'll keep you posted as this progresses.

~heather

Getting Better!

2011-03-21T17:12:00.000-07:00

Just a quick update to let you know that Endurance still has his blood infection, which seems to be getting better. He is just on two antibiotics now and the doctors have slowly turned his nitric oxide off. With that said, he is spiking a fever when he's awake, which is keeping the doctors in wonderment, hence, they've taken more blood cultures this morning.

So, he's getting better, but being watched to see if something new is brewing.

"Not that I speak from want, for I have learned to be content in whatever circumstances I am." ~Philippians 4:11 NASB

2011-03-17T18:52:00.000-07:00

This is Mike's posting to our church on Tuesday. I will post the update at the bottom of this post:

Endurance is struggling right now. He was confirmed for a blood
infection this morning. He is allergic to the best antibiotic for
this infection, but they have decided to give it to him anyway with
doses of Benadryl to counteract the side effects, and then they give
the antibiotic slowly

He also is being checked for a virus. We won't know about that until tomorrow.

His oxygen saturation levels are at the lowest levels that I have ever
seen on a consistent basis, even though we have increased his
ventilator to the maximum support. We are beginning, as I write this,
a second heart medication to force his heart to beat harder in order
to help force out the CO2. Praise God that we have a good nurse
tonight, and Endurance is her only patient.

Thank you for bringing Endurance before the Throne of Grace.

For Christ and His Kingdom,

Mike (for Mike & Heather)

P.S. The Ethics Committee situation was blessed by God. I won't
waste your time with the details, but our Lord is good. Romans 8:28
definitely applies in this situation.

Update....

So much has happened to Endurance that I will probably forget things, but I'll do my best. Endurance has a blood infection. In fact, the Cardiac ICU's record for no infections was 163 days until little Endurance. Sorry CICU, back to zero! They don't know for sure yet what exact infection he has, but are giving him 3 antibiotics to fight it. The pharmacist was quite concerned about his kidneys, so they are watching this as well.

This infection has been testing all of Endurance's caregivers, as they are having to come up with ideas on what to do to control his numbers and keep him alive. As one doctor said, "we have a few things in our back pocket." Today I told her that her back pocket must be pretty big as they keep coming up with stuff.

The doctors want Endurance's "sats" to be between 75-85%. A normal person with no problems would most likely have 100%. Yesterday his sats at best were in the low 60's and that wasn't for long...mostly in the 40's. At one time while we were talking to the doctor, his sats starting dropping to 0! Oh boy did that make our hearts leap. Due to his poor sats, Endurance is now getting nitric oxide.

The doctors were also very concerned about Endurance's body trying to fight his infection and not being able to. High concerns of him passing away. (One of our favorite doctors said that Monday night she would go home and not worry about Endurance, yet tonight (Tues) she would be.) So, since his sats were too low, fighting a fever, and lots of body movement, they are now giving him an IV drip of something called vecuronium (vec), which paralyzes him. If you were to just walk in the room, you'd think he was dead. Even his eyes don't move, yet his heart is not disturbed from this. He is also in an upright/reclined position.

Endurance was on a "vec holiday" as they put it, today. A small trial to see what he does when he "wakes up." It took a bit over an hour for him to come off the meds. He seemed to do fine for about 30 minutes. Then his sats dropped and the nurse turned the IV back on.

Endurance is also in isolation for upper respiratory virus indications. For this, they can give him nothing. He just has to ride this one out.

Also, Endurance's heart has gotten bigger since yesterday. He's has two echocaridograms. It's rather floppy and slow.

Endurance has been given so many medications these past two days as well.

He's not out of the woods, but we praise God that Endurance is still with us and everything that his nurses and doctors are doing seem to be for his best interest. We see God's handiwork in all of this and clinging to Him even more.

Thank you for your prayers! Sorry for any grammatical errors, fellow homeschooler! My brain is quite fogged! :)

Six Months Old!

2011-03-10T20:44:00.000-08:00

God be praised! Endurance celebrated his 6-month old birthday today! (Pictures coming soon) I believe he enjoyed every minute of it. His room was decorated when I got there this morning, by Wendy, part of the Child Life department. Endurance's brothers and sisters made a birthday poster that was posted outside his sliding glass door today, so people would walk by, read the poster, and then pop their heads in to say "Happy Birthday Endurance!" Also, the girls had made a lot of cupcakes to give to so many people that have taken part of caring for Endurance. It was so nice to bless so many people! It was so nice to have a "different" day around here.

The doctors really want to try to get Endurance to "eat." They started him off this week with 1ml (1/5 tsp) every 6 hours. He seemed to be tolerating it, though it usually takes a day to really see. Yesterday they raised his feeds to every 3 hours. Last night through this morning was terrible on his gut. A lot of painful kicking and crying for hours. The nurse checked his residuals and got 3ml out (9 hours worth was still undigested in his gut). So, again they turned off his feeds.

In this morning's rounds, the fellow doctor said that they should still try and start it again at every 3 hours, but was up for discussing this. Praise God that I was able to pipe in my two cents and ask to please, if they really want to try this, to try it at 1 ml every 6 hours again for a few days. They said sure. On a lighter side, his doctor even said he'd take a bite of his cupcake every six hours for Endurance's sake! So now we wait. Please pray that he'll do okay with his feeds. His gut really needs to have something, anything, in it to "work" and get his good bacteria moving around. Endurance is surely living up to his name.

All in all Endurance has had a good day. May he be blessed with a good night as well. In everything may God be glorified.

God is still in Control!

2011-03-04T14:13:00.000-08:00

Psalm 20:7 Some boast in chariots and some in horses, But we will boast in the name of the LORD, our God.

Well, Wednesday's presentation never happened. The head cardiac surgeon and the cardiologist that dreamed about Endurance had a (very short notice) meeting with Mike and I. To put this quite briefly, the surgeon informed us that there is no surgery, except a transplant, that can be done for Endurance. He, (I won't give his name) gave one more effort to promote the heart transplant, and with our decline, got rather upset and said he needed to bring our case up to the ethics committee. We are blessed to be part of Heritage Defense and are presently keeping them informed of Endurance's situation, and if anything comes up with this committee.

After the meeting, I felt like all hope for Endurance was gone. I had put my trust in the Echo he had on Friday and in the doctors! I walked in Endurance's room and just cried over him. It wasn't until the cardiologist came in a while later and apologized for possibly getting our hopes up and that they (the medical staff, not the surgeons) are "not giving up on Endurance." She said "You can't give up hope. You need to keep praying for a miracle in his life." Her words struck me. We're going through Ezra at church and learning how God uses even the ungodly to perform His will. And here this cardiologist's words are what caused me to drop to my knees in repentance for losing hope, not in Endurance to get better necessarily, but showing me that God still is, and always has been in control. He knew what the meeting was about. He knew what the surgeon would say. He knows already, the outcome of Endurance's life!

So, in spite of the surgeon's comments, we are further pressing on, depending on God as our refuge and provider. His grace still abounds in Endurance's precious life.

Please pray for us, Mike especially, as we don't know what lies ahead. Who knows, but God.

I need to write this again... Psalm 20:7 Some boast in chariots and some in horses, But we will boast in the name of the LORD, our God!!!!!!!!!

Two Updates

2011-02-28T22:13:00.000-08:00

I have had a difficult time finding time to post updates for Endurance. My apologies. They get written in my head and stay there. So, here are two updates that Mike sent to our church family, the first from Sunday morning and the second is Monday evening. May God be praised!

Sunday...
They asked for a "3-D" Echocardiogram this week, a newer technology, and using a machine that the hospital has recently purchased. They were "testing it out," so to speak, on Endurance. One of the reasons, is that a Dr that had been off on maternity leave and recently came back had a dream (!!!!) of Endurance the other night, and came in that day telling the other Cardiologists that they needed to see if there was something more they could find as an option for Endurance!

The Lord be praised! They will present Endurance's case again to the full Monday morning 40 member decision group within the next couple of weeks. Maybe they will see something new, or at least make a decision to try a surgery that may be very risky, but may have life lengthening possibilities. It is in the Lord's hands, and we thank Him for his loving mercies.

An update regarding his "presentation" before the group of doctors......the presentation will be this Wednesday!

Monday.....

Early this morning, while Sarah and the nurse where changing Endurance's linens, his PICC line (where his medicine's are given to him) came out - just came all the way out of his leg, and fell right onto the bed! We're talking about a line that goes in his leg, tunnels around under the skin, enters into a femoral vein in his groin area, then goes all the way up into his right Atrium (part of his heart). It just came out!

They had an IV put in his foot temporarily. The praise is that this afternoon, Endurance successfully underwent a surgery / procedure to put in a new Central Line! Not only were there no complications, but all of us, (8 or so?) were following him all the way down the long hallway to the surgery room to say "goodbye for now," and they let us halfway into the room there to pray for him and to see him one more time.

Due to Endurance growing to over 5 Kilos now, they were able to fit in a double lumen line - something the ICU staff are all thrilled about. It means they can draw blood on one of the lines, without having to stop all of his meds from the other line, as they are forced to do now. And they can also give meds at the same time that are not compatible through the same "lumen" or line.

God is Good. Yes, He can even use a short term 'catastrophe' to turn out for the Best!

In Christ,

Mike (for all of the Holstons)

Thank you for all of your prayers for little Endurance. God is using this little pumpkin in mighty ways here in Seattle.

I was looking through some pictures......

2011-02-22T11:06:00.000-08:00

Endurance is having a good day, he is as cute as a button! We are praising God for this little sweetpea, what a precious gift!!!
I was looking through some pictures and I thought I would share.........

January: Getting groomed for the day!

Starting out with a shampoo...

(photo credits go to David:)

He loves his hair being combed, that's for sure!

Sweetpea!

February: These were taken two days before he was intubated.
What a blessing to have captured these!
(we were waiting for a new C-Pap mask to be put on,
so his nurse took advantage of it and gave him a shampoo.)

In case you're wondering "how's he breathing?" The clear tube behind Endurance is blowing out oxygen. I think he was more concern about remembering his sibling's names!

A very tender moment...!

A dear friend made Endurance a "pumpkin" hat and mittens!

One of the most recent photos of our little boy!
His breathing tube is now going down his nose.
Maybe we'll get a smile from him yet!

Pictures and Prayer

2011-02-11T18:36:00.000-08:00

Yesterday's pictures graciously taken by a dear friend Mrs. Hatch...

Underneath the breathing tube, picc line, wires, bruises, and scars is our precious pumpkin.

The mouse is one of his favorites. He loves to feel his blanket when he's not in "sock prison." The socks are to prevent him from pulling on his breathing tube, another favorite past time of his.

Enjoying this precious moment!

My what big eyes you have! Endurance is fascinated with cameras!

Prayer....

These past couple of days have been quite stressful for us. Endurance's feeds have been turned on, turned up, and turned up even more. Now they are turned off again. I asked if he could be given a non-FDA approved, yet being used in Europe with great results, something called Omega-van. It would greatly improve his liver. And prevent damage. Unfortunately he is not a candidate since his liver is not as bad as it's supposed to be.

With more greater concern, I speak rather sadly on the subject of his care. Due to our "outrageous" decision to re-intubate him, meaning taking the next step to keep him alive with a breathing tube, I was told today by Endurance's nurse that "to be honest, a lot of nurses and RT's will not take care of Endurance since they believe Mike and I are being inhumane!" What? Well, that crushed me more than I ever thought I could be. Of course, now that I know that "they" have weeded themselves out, then we know that the ones taking care of him don't mind, yet I am still entangled by what she said.

I have had other comments about our decision for Endurance's life. One nurse told me that she would never in-tubate her children. Another has stated, "We're going farther than most parents." One of our heart failure doctors asked in an interesting tone, "is he really comfortable?" and after saying that he left Endurance's room.

Are we that wacko? No! We're requesting that they give food and air to our little one. Mike told me that most staff here would probably believe that Terry Schiavo's death was humane. This is crazy! This is real.

Please keep us in your prayers as we stand in our faith with Endurance. God is and will be our strength!

Deuteronomy 30:19

"I call heaven and earth to witness against you today, that I have set before you life and death, the blessing and the curse. So choose life in order that you may live, you and your descendants,"

A Quick Update

2011-02-08T11:56:00.000-08:00

I have a quick update regarding Endurance...

Last Thursday night, sadly when we were all at dinner, Endurance was intubated (a breathing tube down his mouth and connected to a ventilator). It was an event that God's hands were completely in charge. The procedure went better than expected, from the doctor's standpoint. Oh how God directs the hands of the doctors. They gave him the sedatives so slowly due to his condition. He came out of them quite well.

Had he not been intubated, his nurse said that he most likely would have passed away that night or early the next morning. When Endurance's next nurse came in for her shift in the morning, she looked at Endurance and started crying. Mike was there and said she then took a deep breath and said she'd be fine, and then went on to her duties. Now, nobody can convince me that this cute little pumpkin has not had an influence on the staff here.

He is showing improvment in his over-all counts and numbers. He had a nice nap this morning with his heart rate going as low as 138.

They started his feeds again. If this doesn't take my breath away when I hear that they want to try. I have done a complete turn around by not wanting to push him any farther about his feeds. So we're just watching him today. He's been gagging a lot and needing suctioned a lot. Also throwing up, but that happened yesterday as well, before his feeds. So the watch to see if he'll stomach the breastmilk is on. God is in such control of even this situation. The nurse said they will retape his breathing tube and see if that will help stop some of the gagging.

Other than all of this, he seems to be doing "well." You have to watch him more closely so you know when he's awake, as you cannot hear him anymore. He used to be the loudest pair of lungs in the CICU! He was famous! I could recognize his cry from down the hall. Now his room is pretty silent, except for his cooling blanket machine and the slight sounds of his ventilator.

I will have to write later to talk just about the "end-of-life" conversations we've been having with doctors and nurses.

We've been praying for God to give Endurance the best nurses that will really take good care of him and not walk out of the room much. I praise God that today's nurse was the exact one we asked for! God is so sweet to have given Kelly as Endurance's nurse today. She's the nurse that kissed him and said "I love him!"

Until then, we thank you for your consistant prayers for Endurance!

February 1st, 2011

2011-02-01T23:37:00.000-08:00

It has been a while, again. So much happens when you live in the ICU. To catch you up to speed, Endurance "crashed" almost two weeks ago...at 2:30 am to be precise. They paged us and said that they were considering intubating Endurance again. Mike immediately ran over to the hospital (I praise God we live so close to do this very thing!), and discussed with the attending doctor and decided that they would put him back on the C-PAP. Hence, that's what he's been on since then. Also his feeds have been shut off.

Endurance's heart rates are regularly in the 170s - 180s. His respiratory is a bit higher now as well. He also was diagnosed with a virus called the adenovirus or the "killer cold," which has put him in isolation for over a week so far. Anyone who comes in his room now garbs themselves with yellow robes, masks, and gloves. And our little ones under 10 may not see him (a new curve ball as to who goes to the hospital with Mama and who stays home). It's been hard on "the littles" not getting to see "Dernance," as little Faith calls her little brother.

And then today...

Our little pumpkin started his day not well. Not well at all. Each breath was a huge tug on his lungs and rib cage. His heart rate was high. His saturations, something I'm still learning about, were low. Very low. Too low for this little man. X-rays were taken to see if he had a collapsed lung. No. An echocardiogram was given to see if there was any perfusion around his heart. No. Blood was drawn. Tests and more tests were taken. I called Mike and asked him to come over right away. He was not doing well. Re-intubating him was discussed in rounds. That's what Mike and I have requested if Endurance cannot under any other circumstances tolerate the C-PAP anymore. The doctors expressed their agreement that they don't want to intubate Endurance unless absolutely necessary and if he didn't get any better, it would be absolutely necessary. AND if they had to do it, to make sure we knew that he could die during the procedure. He could possibly have a cardiac arrest, or not handle the paralytic drug that must be given, etc, etc.

After rounds Mike called one of our dear church elders to let him know what was going on. Immediately the urgent prayer request was spread with a request to pray and fast if possible. God answers prayers!!!!! Within 45 minutes after the doctors rounded and the next set of tests were performed, his lactate level had gotten lower (the most crucial), his heart rate was lowering, his temperature lowered, and praise God, his breathing was showing much improvement. God answered in His time, and showed me in so many ways today how He is in charge of Endurance.

I am (oh so slowly) learning that I can do nothing except with God's strength. I am running this race with Endurance only with His strength. Only His amazing grace. I never really, really understood what that beautiful hymn meant until Endurance was born. Now it's a daily walk in God's amazing grace. And how sweet it is.

I ask that you pray for God to heal Endurance, if it pleases Him.

May God bless you! ~Heather

Tuesday, January 18th

2011-01-18T20:22:00.000-08:00

Deuteronomy 32:36
"For the LORD will vindicate His people, and will have compassion on His servants, when He sees that their strength is gone, and there is none remaining, bond or free."

Today was a bit exhausting for me, and not to forget exhausting for Endurance.

Endurance's feeds were turned off again today. He was getting 1ml an hour, which is about 1/5th tsp. It goes back and forth, on and off so often that I don't wonder why he doesn't gain much weight. He's now at 4.7 kilos, which is a little under 10 1/2 lbs. About 2 1/2 pounds weight gain since birth. The doctor's explanation for today's food shutdown was for Endurance's agitation and high heart rates not coming down. He was still upset afterward too. The doctors really don't have a good explanation for his frequent agitation.

Endurance had 7 in-house visitors today, including an occupational therapist. She told me Endurance will start having little therapy sessions, training him to get his neck strengthened, so when he sleeps he doesn't shift his head backwards, almost touching his back. Definitely not a chiropractor's recommended position!

Endurance also had two different chaplains visit at two different times. One of them also has another job description and that's what Mike and I know him as. The other one, a woman, came to meet me. I must admit that I felt completely uncomfortable. I didn't send for her and I really didn't want to talk to her at that moment. If I want to talk about the possibility of our son dying, I'd rather talk to Mike, one of our elders, or a godly friend. Sorry, I just feel like they are "pushing" Endurance through their line sometimes. She did get Hannah and Noah doughnuts though. Buttering them up???

Endurance smiles now when he's happy! Absolutely adorable!!!! He tries to say baby "hello's" as well. He seems to be pretty out-going.

Thank you again for all of your prayers and encouraging words!!!! I'm hoping to have a better day tomorrow.

Oh, something cute: yesterday Endurance was going to have the dear McKinley family from church visit, so I asked for a comb to get rid of Endurance's "mad scientist" hair. His nurse Kelly said, "well let's just give him a shampoo and make him smell good instead." Great! After he was finished and hair all dolled up, Kelly gave him a kiss on his forehead and said, "I shouldn't have done that without asking, but he's soooo cute! I love him!" Endurance will put Kelly on his nurse request form!

Four Months Old!

2011-01-11T11:46:00.000-08:00

Yesterday Endurance turned four months old! God be praised for this! He was making a few baby noises and little itsy-bitsy smiles with the help of caressing his chin!!! I love holding him while I stand, so I can rock back and forth quite easily.

He's been having somewhat good days, which means his heart rate is between 130-170, no fever, and breathing rates between 35-70 (these are just my observances).

This morning though, at around 6:30 am his heart rate was in the high 220s. This happens. If it happens for quite a few minutes (about 15 minutes or so, depending on his nurse), his nurse will give him a "bolus," which means a large volume of fluid or dose of a drug given intravenously and rapidly at one time. With him, his boluses can either be dilaudid (which now takes place of his morphine he used to get), or ativan (anxiety). He gets dilaudid and ativan (also called Lorazepam) regularly through his drip lines. Anyway, this morning he got three boluses early this morning. When I came in at 9:00, his heart rate was still in the 210-230s. His respiratory rate was anywhere from the 80s - 110s. Ouch! He got a fever then around 10:00, which then his nurse gave him Tylenol.

Coming from a family where we do not go to doctors except for emergencies, don't use prescription drugs, and definitely no immunizations, this is heart breaking to just say "here he is, give him what you think is best!" Can't we just give him a bath in Arnica and everything will be okay????

As I left his room to write this, his heart rate was in the 180s. His doctors said to shut off his feeds again, for a few hours, since he's working so hard with his heart rate being high. They also ordered a bunch of blood work. This poor little guy! His picc line doesn't draw blood anymore, so the lab needs to come in and draw manually. He hates this. I do too, at least the having to hold him down part. I need to figure out how to get more pictures downloaded for this blog to show all of the poke marks on his arms and legs.

Yesterday they started giving him only breastmilk! It's a first since his first week of life! They had been concerned that Endurance might have a milk protein allergy, that would be in my breastmilk. But a doctor that just got back from maternity leave and is extremely pro-breastfeeding, asked if any of my other children have had allergies. When I said no, she said let's give him only breastmilk! Again, may God be praised! We were cautioned though, that if there is any signs of blood in his stools, they will shut his feeds off completely for 10 days and treat him for NEC again. So far so good!

Endurance's roommate is a cute little 5-week old named Eden Grace. She small enough to fit in a pocket! Her mother took Endurance's birthday picture for us yesterday. When she emails it to me, I'll post it!

God has been good to our family. We thank Him for the many, many blessings He's given us and is showing us!

My dad sent us some keychains with this verse on them. May we truly live up to these words with God's help:

"Consider it all joy, my brethren, when you encounter various trials,
knowing that the testing of your faith produces endurance.
And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing."

James 1:2-4 (NASB)

Thank you again, for your prayers!

Bath day!

2011-01-03T18:40:00.000-08:00

He really likes his baths!

Nice and warm:)

We've Moved to Seattle!

2010-12-31T14:47:00.000-08:00

Hello!
We have moved and are now living within walking distance of Seattle Children's Hospital. In fact, it's two blocks away or 19 seconds by car. The Lord truly blessed us!

Back of the house...

Really cute backyard!

If you are ever in the area pleased stop by! We would love to see you!
Also, thank you to everyone who blessed us and helped us move!

Oh so Sweet...........

2010-12-30T22:50:00.000-08:00

Thanking God for all the days we have and will have with Endurance..............

Bright eyes............

He was a little glowbug today!.............

Sister LOVES to hold him!!! :)

Merry Christmas From Endurance!

2010-12-25T19:27:00.000-08:00

Christmas Morning with Endurance

Christmas Eve

Isn't he adorable!

Surrounded by his friends!

God Is In Control

2010-12-13T13:24:00.000-08:00

I know it's been a while to post. We've been trying to fight a bad cold and coughing. We are on our third week with this! Because of this, Mike has been driving back and forth to the hospital taking the sick children home and bringing me well children for company. Last week all of them were sick so they were all up here in Seattle together, me tending to the sick kiddos, while Mike stayed at the hospital. Now I'm sick and still having to stay away from Endurance. I haven't been with him since last Thursday

When a person like you or I get a cold and pass it to someone else like you or I, we get it, feel miserable, and go on with life. The nurses have stressed to us that if someone like Endurance, sensitive and very low immunity, were to catch the cold, it could be devastating. Hence, I have not been able to see him. However, God has blessed us with loving nurses while I am away. They hold him, put his Christmas music on, and spoil him with lots of love.

Last week the doctors received word from Boston Children's and Stanford Children's Hospital regarding our request to see if Endurance would be a candidate for a certain surgery that only they perform; in short, scraping the insides of ventricles. He is not a candidate. With this news, the doctors told Mike (and me the next day) that we have two choices....#1) they could possibly work it that we could take Endurance home and he would possibly live just 2-3 months. Or #2) stay at the hospital and he could possibly live 4-6 months. Wow. Making a decision about life, isn't that God's department? Mike and I both knew right off that life is more important. So our "choice" is to stay here for as long as possible. Our real choice is to know that GOD IS IN CONTROL!!!!! Whether he lives until next week or until he's 23, it's in His hands.

I wish I could say that's all that has happened last week. Nevertheless, Endurance now has an incredible infection called Necrotizing Enterocolitis "NEC," So he's off of his feeds (formula is what he was "eating") for at least one week, possibly two, or??? He's on antibiotics as well. They actually took his feeding tube out of his nose and replaced it with a suctioning type of tube to "vacuum" anything left in his intestine. It doesn't hurt him at all.

On top of all of this, we're looking at homes to rent up here, close to Endurance. The neighborhood that this hospital is located is very elite. It's a safe area to be living at, for Seattle also. I didn't know that "safe" and "Seattle" could be in the same sentence! We also know that God is in control of this. I am in awe how God has His impression everywhere I turn. Or should I say, I am finally seeing this as I put "self" aside.

Romans 8:28-
"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. " May we cling to this verse for whatever we endure today.

The Different Faces of Endurance

2010-11-30T12:11:00.000-08:00

I want to show you my cute little pumpkin!

Here he is on the ventilator two weeks ago. He loved to hold his breathing tube!

Here he's graduated to his CPAP! Isn't he cute!!!!

He got an upgrade on his bed....a crib! It's big for this little guy.

Endurance having one of his breaks off of the CPAP with just a little extra oxygen. The yellow tube coming out of his nose is his feeding tube. His forehead has a reddish mark on it due to the tight-fitting straps for the CPAP. That's why his eyes are puffy as well.

David, Noah, and I enjoying a CPAP break

It looks like I'm telling him about the hospital bill, but I'm really telling him about his brothers and sisters!!!

Thank you for your continued prayers for Endurance. He has a long way to go, but it's a step in the right direction by having him breathe without the use of the ventilator!

2010-11-26T16:06:00.000-08:00

Hello!

It's been too long since our last posting. I do apologize! A lot has happened since then...

#1 - Endurance has been extubated!!! No more ventilator! We're praying that this will be permanent. He is now breathing with the help of CPAP. He's been doing so well that he gets "breaks" using a hi-flow tube three times a day for an hour each time. Yesterday I even got to hold him with nothing connected to his nose! I held a hose blowing 100% oxygen out, which was just laying on his chest. He did really well.

#2 - Endurance has now graduated from an infant warming bed to a really neat crib! It looks like those big, old, white cribs from the early 1920's hospitals, yet can weigh him, it's electrical so the mattress can move. So his head and chest are propped up.

#3 - I got to hold him using "kangaroo care!" Quite modestly so Mike and little sister Faith could come back in the room. It was so neat! He fell asleep in my arms. He seems to like doing that!

We're moving to another room again. I see I have a hard time with changes. Moving to different rooms makes me cry as though I were being told his heart is getting weaker. Part of our sermon at church last week talked about anxiety, and how some people don't appreciate something until it's not there anymore. Changing rooms gives me that same anxiety which I need to work on. I always like the room Endurance has after he's moved out of it. I'm trying to get over this. It seems so silly and completely minor to what we're dealing with, so please bear with me. Philippians 4:11 - "Not that I speak from want, for I have learned to be content in whatever circumstances I am!" We have Amanda as his nurse today! It's a good day...

Thank you for your prayers!!!

2010-11-19T22:36:00.000-08:00

Psalm 135:5-7

    ⁵For I know that the LORD is great
         And that our Lord is above all gods.
    ⁶Whatever the LORD pleases, He does,
         In heaven and in earth, in the seas and in all deeps.
    ⁷He causes the vapors to ascend from the ends of the earth;
         Who makes lightnings for the rain,
         Who brings forth the wind from His treasuries.

Endurance had a really good day today! The last time he had a good day like today was over two weeks ago, but that was after a surgical procedure, two blood transfusions, and pain meds.

This morning's really good day was so different and better! All day yesterday he was running a fever around 103. He was given tylenol. During the night his nurse only gave him tylenol and no pain meds. In the morning when the head attending cardiologist Dr. Baden, came in, Endurance's fever had broken, his heart rate was in the low 100's, and he was completely resting comfortably!

This is how his whole day went. They even lowered one of his ventilator settings for him to breathe a little bit more on his own and he did great all day!

Each time the different doctors came in his room they were so bewildered yet happy that Endurance was doing so well. Lot's of smiles today!

By the way, we had two birthdays today! My dear husband turned 43, and Endurance turned 10 weeks old (Happy Birthday sweethpea!) Our dear friend and church elder, Brett, suggested that we celebrate each month of life, each week of life, each day of life!

Let God be praised!

2010-11-16T22:21:00.000-08:00

Hello!

Endurance's day started off as usual, getting highly agitated, heart rate going over the 200s, etc. In fact, during rounds this morning the doctors agreed to raise his doses of morphine and adavan (this is supposed to calm him). I was sad about this.

Endurance gets extra pain meds and other various meds through a central line called a "Broviac" that was surgically placed in his chest about a 6 weeks ago. I was told that it's supposed to last approx. 9 months. It has stopped working for some reason. He had an ultrasound this afternoon to see if there was a clot in the line or some other obstruction. Nothing much was found.

In the mean time, to be able to get Endurance's extra meds in, a central IV line was put in his foot. OUCH! But praise God, his meds went straight through and he has been a different baby ever since! I wish I could say he leapt out of his bed, but that's not the case. Yet, his coloring that seems to be always off, is great! When he's been awake, he's been calm and looking around. His heart rate has been around 150 while sleeping and 120 awake! Oh what a difference!

Tomorrow Endurance is mostly likely going to have a procedure done in the IR to remove his broviac line that's not working and replace it with a new one. Please pray that all goes well!

Oh, I wanted to mention what a joy it is to have nurses that Endurance has had come to visit him. Today his favorite nurse, Amanda, came for a visit as well as two others. I pray I can be a godly witness to everyone that comes in his room.

God is Good!

2010-11-14T00:25:00.000-08:00

(Saturday night)
I got to hold Endurance this afternoon! He was doing quite well this morning so in the afternoon the nurse and respiratory therapist helped transfer Endurance to my lap. I enjoyed a little over an hour of holding him. He fell asleep and slept pretty soundly, with his heart rate going down to the 140's.

After my holding him, he had quite a few unexpected challenges that required immediate response from quite a few people. I am amazed how quickly people rush over to help patients in trouble. Everybody kicks into gear and works like a team.

Endurance's heart rate went up over the 200's, his breathing tube's tape came off, and his coloring became very mottled. The nurses gave him more morphine and a paralytic drug to stop him from moving so the R.T.'s could retape his mouth tube.

Endurance kept on kicking and moving his hands. He just wouldn't stop moving. They called a doctor in to see what might the matter be. They were so concerned about his coloring. The doctor didn't know either and ordered an x-ray to see if it would show something.

Meanwhile, Endurance finally settled and the r.t.'s did their job. Nothing of concern was found on the x-ray, and praise the Lord, Endurance's coloring started to improve and his heart rate went down!

God ended our eventful day with our favorite nurse Amanda coming on duty as Endurance's night nurse. We are always blessed when she's Endurance's nurse. Before her shift has ended, Amanda always makes sure that our little one is "done up" somehow. Whether it be with a hat and booties, all of his linens with a matching theme, a bath and a onesie put on, etc. We've already invited Amanda over to our home for dinner when the Lord sees fit to have our family all back together again.

Mike and I thank you so much for all of your prayers. God is so good, isn't He?

Psalm 145:8-9
The Lord is gracious and full of compassion, slow to anger and great in mercy. The Lord is good to all, and His tender mercies are over all His works.

This is Endurance

2010-11-11T22:32:00.000-08:00

Let me briefly tell you about Endurance so you'll know his story...

Endurance Jonathan Holston was born on September 10th, 2010 with a congenital heart defect called Critical Aortic Stenosis /Aortic Atresia, causing his left ventricle to swell, leading to dialated cardiomyopathy, which basically the left ventricle was huge and not working.

On his second day of life Endurance was taken to Mary Bridge Children's Hosptial in Tacoma. He had two surgical procedures called an atrial septostomy and a balloon aortic valvuloplasty. Three days after the surgery, the head cardiologist advised Mike and I to either proceed with "comfort care," meaning let him die "peacefully," or to transport him up to Seattle Children's Hospital to investigate the option of heart transplant.

The day after our arrival to Seattle Children's, Endurance (a whopping six-days old!) had his second valvuloplasty. It was another success that we praise God for!

A week later, realizing that the previous surgeries would not be enough, we were referred to the heart transplant team. During this time, and praying for guidance, the Lord led Mike to several Godly men for advice. Also, by the hand of God only, we listened to these very awesome, informative cds on the exact topic of brain death and heart transplants. By the way, if you have not listened to this conference or have never heard of it, we highly recommend that you do! You'll see how we've all been misinformed. Mike also found a page online that reiterated the newly redefined term of brain death as Dr. Gill and Dr. Payne had described on the cds. Mike and I made the very difficult decision to not proceed with a heart transplant for Endurance. Onward ho!

We then moved forward with a hybrid palliation stage 1 operation when Endurance was 26 days old. This procedure coincides with patients that have hypoplastic left heart syndrome, yet was the best option for Endurance. It consists of three procedures: pulmonary banding, a stent placement in his PDA, and a more agressive atrial septostomy. This surgery allows us multiple options, if God wills, when Endurance is 5 or 6 months old.

So here we are with Endurance, being 62 days old. His days are up and down, good and bad. We're still praying for his left ventricle to work. We're praying that his right ventricle, which is getting weaker daily, to improve. We're praying for God to sustain his life, if He wills...

James 4:13-15

¹³ Come now, you who say, “Today or tomorrow we will go to such and such a city, spend a year there, buy and sell, and make a profit”; ¹⁴ whereas you do not know what will happen tomorrow. For what is your life? It is even a vapor that appears for a little time and then vanishes away. ¹⁵ Instead you ought to say, “If the Lord wills, we shall live and do this or that.”

First post to the blog!

2010-11-04T22:19:00.000-07:00

Hello!

On behalf of Endurance Jonathan Holston we have started a blog to "journal" as frequently as possible, this time in our lives!

Thank you for your prayers and support!

Gratefully,

The Holston Family