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.
Thursday, March 10, 2011
Friday, March 4, 2011
God is still in Control!
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!!!!!!!!!
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!!!!!!!!!
Monday, February 28, 2011
Two Updates
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!
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)
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.
Tuesday, February 22, 2011
I was looking through some pictures......
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.........
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:)
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| Sweetpea!
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| 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! |
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| A very tender moment...! |
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| A dear friend made Endurance a "pumpkin" hat and mittens! |
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| 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! |
Friday, February 11, 2011
Pictures and Prayer
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,"Tuesday, February 8, 2011
A Quick Update
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!
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!
Tuesday, February 1, 2011
February 1st, 2011
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 18, 2011
Tuesday, January 18th
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."
"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!
Tuesday, January 11, 2011
Four Months Old!
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!
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!
Monday, January 3, 2011
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