Thursday, February 27, 2014

Greiving

I knew this was coming. The absence of Gideon has hit hard. Monday Malia (7) called, crying,  20 minutes after school started asking me to pick her up. I had no hesitation picking her up because she had sobbed herself to sleep the night before and woke up crying. At 2:00pm Clayson (9) called. Back to the school I went. Just being home gives them a sense of safety and comfort. They both wrote in their journals and glued pictures of Gideon in their books. It was very therapeutic. Today Casey came to me asking if he could stay home. I asked why, knowing full well but wanting him to express it. He broke down and cried and just said "Gideon". He went down stairs and fell asleep on the couch. 2 hours later he was on his way to school.

The sorrow can be so consuming and you just don't know when or why it will hit. I wanted to help Sereen after giving birth to Sierra a week ago. I have felt neglectful of both Sereen and Sierra. I want them to know I think of them and love them, so I did Sereen's shopping. She did the same for me while I was in the hospital. Wal-Mart was fairly easy but Costco was not so good. I had packed a snack for the kids and while handing them out realized that I had packed 4 snacks and only needed 3. We got diapers and it hit me so hard that I no longer needed diapers or wipes. It seemed everything there reminded me of something about Gideon. I just wanted to run out of the store and hide but I knew I had to face this. I can't just run away or I will never feel joy and peace. The pain just got worse and worse. I pasted my smile on my face and tried to pretend all was well. If I had seen anyone I knew I would have broken down right there.

Just as expected, we are all experiencing the grief differently and at different times. For the most part we are doing well. Life is back to the normal activities. Service needs to become the focal point of every one's lives. I know that through prayer and service we will overcome the sorrow more quickly and grow to be better people. I am in the process of making bibs for a Cleft lip and pallet surgery trip for Love Without Boundaries. I may not be keeping up on the house like I should be. But as I do the bibs my thoughts go to better places. Service is such a blessing to our souls. Just like blogging at the moment. This morning has been very hard but as I write I can feel some of the weight lift and a light take it's place.

Once again I say "I can do hard things". I still would not trade this experience or Gideon passing for him to be here. I know he is filled with joy and happiness and that one day we will raise him to maturity. We will experience joy beyond comprehension when that day comes.


 
We set up a display of some of the things important to us and Gideon.
The Thomas book was given to him the day he entered the hospital this last visit.
He had to have it with him at all times. It was so important to him that
I made sure the doctors had the book in the Cath lab
so as soon as Gideon woke up it would be there.
Sure enough, the first thing he asked for was his book.
That was before he was even coherent.

 
We had a friend make this beautiful casket for Gideon.
That story will come in another post,
 written by Doug, in the next day or two.
 


 
These are dear friends of ours. From the beginning of our journey
to bring Gideon home they have been by our side.
No other person was as involved or in love
with Gideon like these friends.
Their support and love is invaluable and we
count them as some of our greatest blessings.
Thank you Christine and Jean!

 
The poignant thing about this picture is the look on my
brothers face. He is in the very back behind the tent with the red tie.
He is so full of love and compassion. I can not see this picture
without tearing up.

 
Each sibling and parent placed a rose on the casket as we said goodbye.

 
You will notice the smiles on our faces.
We know we will see Gideon again.
He is sealed to us for eternity.
He is ours!!

 
The Thurgoods are as close to family as you get.
Janet wrote a song for Gideon a few days after his death.
She and her daughter Jessica
sang it at the funeral. It was beautiful.
The song eased some questions I had and was no doubt
a partial contribution of Gideon.

 
I couldn't resist this and the next picture. What beautiful boys!
Hyrum, asks for Gideon several times a day.
This comes from a boy that just a few weeks before Gideon went to the hospital
was in tears because Gideon had taken a toy or hurt Hyrum. He cried in my arms
and said "I don't want Gideon for my brother".
He did not mean it and now he is filled with sorrow because his shadow
is no longer there.

 
The purity and joy that a baby brings is so healing.
I love little Grant.
 

Monday, February 24, 2014

Saying Goodbye




It has been a hard yet beautiful weekend. Many people took their time to come and support us and celebrate Gideon's life. So many emotions and so much to be thankful for. The Spirit was strong and the presence of many angels were felt. Gideon was near and gave me great strength to make it through the rough patches.

I woke up Friday dreading the next two days. I didn't want to go through it nor face the inevitable. I finally pulled myself out of bed while my sister took care of my kids and cleaned my WHOLE house. Doreen, my sister, was here for a week and took care of our every need. Needless to say, I was very anxious about all my family leaving. We are now alone and it's scary. No more cousins to distract the kids. Everyone needs to get on with life, including us. (Sorry about the side track.) Friday was the day to dress Gideon. I was so afraid to do it. Dave, my brother-in-law who has a funeral home in Washington, talked me through it a bit and reminded me that Mary washed and dressed the Savior. I felt a peace knowing that it was my obligation to my son and honor to care for his last physical need.

We went to the funeral home and we were led to Gideon. Before I realized it I was in the same room as Gideon's body. I stood and looked at him and felt surprise. I felt good! No trauma, no fear. Only love and peace. Several times through the dressing process I said out loud "My Heavenly Father loves me." I knew it was because of him that I had the strength to go through with this last act of service for Gideon. I was left alone for a time because Doug had something else to attend to. As I stroked Gideon's hair and put on his pants I talked to him. I knew he was there and understood all that I thought and felt. I don't remember what I said other than I love you. I was struck by how good he looked! He was dressed in white, including a little white tie and resembled a Prince. I could just see him on display in a museum as a Prince to a great nation. He was royalty and IS royalty. Over the next two days I could not shake that feeling. My son is a Prince.

Saturday came all too soon for me. It is so hard to say the last goodbye and I knew that would be the hardest thing on the kids. The viewing and funeral made it final. Things went well and so many people came to support us. We had the two most important people to me from the hospital show up. The Child Life Specialist summed up what we heard from numerous people. She said "I see many children every day. Few of them touch me like this. Gideon changed me." The most difficult thing was tucking little Gideon in with his blanket before we closed the casket. Doug had his arm around me as I pulled the blanket up. The sadness almost overcame me but Gideon's strength and the blessing of our Father was on me.

When we first thought about the funeral both Doug and I wanted to speak. I know that's unusual but we both had things we wanted to say. Things that no one else could know. I told an abbreviated story of our journey to Gideon and Doug touched on several things regarding Gideon. Our family sang the song "I Love To See The Temple" with a third verse added. A good friend of ours wrote a song for Gideon and she and her daughter sang it. There was a peace and anchoring about the whole funeral.
The family and some friends went to the grave site to dedicate the grave. We took some pictures and said our goodbyes. We are blessed to have the services recorded and will be getting copies soon.

Over and over this past week I  have said "I can do hard things". Yes, I can and I have already. This is going to be a difficult road but we will make it. A new friend helped me solidify my desire to make this challenge a refining process. To allow my pain to bring me closer to Christ. I desire to be completely aligned with His thoughts and actions. To be filled with that pure love of Christ for all that I come in contact with. I want others to know that their Savior loves them with all his heart and be left a better person when I touch their lives. I want to be a force for healing not hurt. I have a long way to go but I am on the road.

Just one more thing. One of my bigger fears has been how can I help all the children mourn and come out the other end with stronger family bonds and greater testimonies of Christ? I know I don't have all it takes to do this. I am just learning myself how to navigate this grief. At church yesterday a scripture in Isaiah was read that spoke clearly to me.

"And all thy children shall be taught of the LORD; and great shall be the peace of thy children."                  Isaiah 54:13

I'm not doing this alone so I can succeed. They are Heavenly Father's children first and mine second.


We have pictures but I haven't gone through them yet. I will post some in the next couple of days.

Thursday, February 20, 2014

Joy Cometh In the Morning


 

 

 
 
 



As most people know by now, our precious Gideon passed away Thursday February 13, 2014. On to a new phase of his life. Our Father needed him somewhere else but blessed us to reconnect over the last 10 months. To create memories and have him sealed to our family for all eternity. We are profoundly grateful for these gifts.

Gideon's recovery from surgery went very well for about 18 hours. Slowly his body showed signs of challenge. At first nothing real concerning but over a short period of time the nurse, doctors and I (Deanne) could see that things were not ok. The doctor ordered an Echo. I was on the phone with Doug letting him know he needed to get to the hospital so we could confer with the doctor when they started the Echo. It was clear to me and the doctor that Gideon's valve was not working at all. We gave each other a knowing look and I told Doug what was going on. Doug left right away to get to us and the doctor and I talked. We knew it was the end. Gideon was being called home.

We called all the schools and checked the kids out. Family members brought them to the hospital and all the older kids hurried up to say goodbye. We were all in the CICU (Cardiac Intensive Care Unit) room together within an hour and 15 minutes. Gideon was on a low dose of Morphine to take the edge off the pain but still give us time to see him while he was awake. We said goodbye, played catch with Gideon and wept together. The young children left while most of our older kids stayed. We had the medicine turned off and were warned in a very compassionate way that it may take a couple of days for Gideon to go. 20 minutes later he moved on and was gone.

When Doug had gotten to the hospital Gideon wanted his Daddy to hold him. For the next 4 hours Gideon sat cuddled in his daddy's lap. Gideon wanted to take a walk with mommy and daddy and whenever I left the room Gideon called for me to come back in. He had to have his mommy and daddy with him at all times. He also made sure that his food was close by even though he never ate it. I sat close to Doug and Gideon and just held Gideon's foot. He loved for me to hold his hands and feet. After Gideon died I held him for a short time. We then laid him down and took care of some simple paperwork while our older kids collected our things. I just couldn't see Gideon laying all alone even though I knew he was gone.

We came back from doing paperwork and realized the kids didn't know we had more things in the room. I asked if Gideon was covered and they said his body was. I clenched my jaw and went in hoping not to see him. I gathered the rest of our things and looked over. There was my beautiful little boy laying there as though he were asleep. I walked over to see him. I bent down with tears in my eyes, kissed his forehead gently and said "Serve well, make all this worth it."

My heart breaks numerous times a day. I love my son with all my heart and wish that I could have him back right now. But I know that one day he will run to me and jump in my arms and we will have a very joyous reunion. Because of the blessings of the gospel of Jesus Christ and the atonement and resurrection our family will have Gideon once again. This knowledge brings me great peace in the midst of the grief.

I will miss Gideon until the day we are reunited. He is and will always be a part of our lives. We are keeping him alive through pictures, talking of him and praying for him still. "He is mine and I am his" never to be permanently separated. I love my Savior for many reasons but today I love him most for the great gift of eternal life and the sealing power of the family. I owe him my life and because of that I willingly let Gideon go to him with great love and sacrifice. A sacrifice that can not compare to the one made for me and all mankind. My hope is that through all of this Mine, Gideon's, Doug's and my children's testimonies will ring forth to the world testifying of  the Love of our Heavenly Father and his son, our brother, Jesus Christ.

I love my Gideon because the Lord loved me first.


                              

                                          
 

Thursday, February 13, 2014

Recovery and Tender Mercies

We saw Gideon about 6:00 PM and he looked just as sedated as he probably did in surgery.  His numbers we all good.  They were just letting him wake up naturally and it was taking a while.  They left the breathing tube in to make sure he could breathe on his own before they took it out.  I left the hospital about 8:00 PM and Deanne stayed.  He was still not awake before I left.  I just called her about 10:45 tonight and she said he woke up enough to remove the breathing tube.  So he is totally on his own - no life support of any kind.  He still has a bazillion tubes and wires connected to him, but his heart and lungs are working on their own.  He was even awake enough to call for me.  (He always calls for whichever one of us is not that at that moment.)  They will keep him calm through the night with doses of morphine as needed, but he should be pretty awake and alert sometime tomorrow morning.  We really hope his appetite returns quickly to expedite the recovery time.

Plugged in.
Right after surgery.

We have recognized the Lord's hand in this process that has taken place over the last 3 weeks.  It was Wednesday, January 22nd, that he woke up bloated with fluid.  (I will dedicate another post in the near future to all the angels who have supported our family in our temporal needs.) I don't know how many tender mercies we have recognized and not recognized, but there were a few today worth mentioning. 

#1 - We had some friends call last night to say that they were going to be in the area around noon today and they wanted to bring us lunch.  When they asked what they could bring, I told Deanne that we should request sandwiches from Village Baker (our favorite sandwich shop), but we didn't feel right about having them go out of their way by asking for something specific.  So I told them just to pick up something fast and easy, figuring they would stop at Wendy's or the like close to the hospital.  Out of all the options between South Jordan and Primary Children's hospital, they showed up with sandwiches from Village Baker.  Does the Lord really care what kind of sandwiches we eat?  Today He did...

#2 - Deanne has been struggling with a really sore upper back and shoulder blade for a few days from sitting and holding Gideon so much.  She had no idea how to get a chiropractic adjustment with our crazy schedule right now.  She knew the chiropractor we go to in Herriman, who is a friend of ours, would have come to the hospital for her, but she didn't want to ask him to do that.  So she figured she would just have to suffer with it until Gideon was home.  However, she befriended the mother of a baby in the ICU who happened to be going through surgery right after Gideon this afternoon.  We we were in the waiting room together and since their baby was going through a very risky operation, they must have had over 20 family members gather to support them.  One of the men was a chiropractor and when Deanne mentioned the pain she had, he offered to adjust her on the spot. They pulled over a couple of ottomans sitting around the waiting area and he fixed her up.  That started a series of adjustments for other people in the waiting room unrelated to them.  He was a very generous guy and Deanne said it was one of the best adjustments she has ever had. I didn't have a photo of Deanne getting adjusted becuase I had my nose in my phone or computer doing surgery updates or work so I just took a picture of one of the other impromptu patients.  Does the Lord care about when Deanne got to the chiropractor?  Today He did...

#3 - We have been trying to figure out Heavenly Father's will through all this.  After a prayerful request to have some insights, Deanne was searching scriptures last night and her eyes were directed to the lines on the first page she turned to that felt gave her that insight.  It helped us deal with the surgery today and all the possible outcomes.  If the Lord chooses to have Gideon with us a long time or a short time, either way, that scripture helped us ready to make the right decisions for him.  Does the Lord answer prayer immediately all the time?  Today He did...

Bonus Tender Mercy for the day - We have a fantasitic nurse tonight to help get Gideon's recovery started as comfortably and as quickly as possible.  Deanne said she is perfect for this stage of the game.  We have really had some great nurses and they all love Gideon -  even though they see his stubborn side once in a while. :)  Does the Lord care about the nurses' rotating schedule?  Today He did...

Wednesday, February 12, 2014

Deanne's editorial to my FB post


Doug's Facebook post...

Gideon is out of surgery. Heart is beating on its own. The valve repair didn't go quite as well as everyone wanted. The surgeon called the leakage "moderate" now, but the other procedure to reduce the blood flow to the lungs should reduce the swelling in his heart over the next few months. The surgeon is hopeful about follow up surgeries in the next year or two, but it really depends on how this repair does. When a surgeon uses the word "hopeful" that is not the best thing in the world, but we feel blessed he made it through surgery and we feel peaceful that the Lord is in charge.


Deanne's comments to Doug's post...

Doug made the last post and I, Deanne, have to just give my take on this. The words "hopeful" were not filled with hope. It was more of "we will see". I asked what the options were for surgery in the future and there are two. They both depend on the valve working ok. The surgeon was not able to do what he wanted to the valve but was able to make some improvement. A doctor doesn't give you much hope when they say that Gideon is problable not a candidate for trasplant because of the pressues in his lungs. I am grateful he is alive and I will conciously treasure every minute we have with him and pray that our family will create such good strong memories that we can carry them with us once he is gone.

Surgery Update 2

We just got word from the operating room that things are going well.  They finally got through the scar tissue from the previous surgery and began the procedures.  Deanne took the call and the nurse told her that they started the valve repair.  She was surprised and asked if the banding on the pulmonary artery was completed.  The nurse told her that the surgeon decided to do the valve repair first.  Ha!  Here is when I get to be as smart as a heart surgeon...at least for little while.

When the surgeon told me this morning what he was going to do (banding first then the valve repair) it was a little after 7:00 AM.  Deanne wasn't there yet and my brain was trying to function on about 5 hours of sleep.  So about 30 minutes after he left, I thought to myself, "Why is he doing the arterial banding first?  He should do the valve repair first."  I know I am not a brain surgeon, rocket scientist or heart surgeon, but in my logic, it should be the other way around. If this was a typical plumbing repair, and the banding restriction is "downstream" from valve which is controlling the flow, I would want to get that valve repaired first so I had the correct volume and pressure in the line.  Then I could figure out the proper size of the fitting needed on the outlet.  Logical stuff.

As Deanne and I were sitting in the waiting area, the two cardiologists who we really like and have been involved in Gideon's case pretty closely, were just walking by and stopped to chat.  They asked if we had any questions so I asked about the order of the surgical procedures citing my vast plumbing experience and making the obvious conclusion that principles and dynamics of plumbing should also apply to heart surgery.  After all of us had a little chuckle at the analogy, they put some thought into my question, then looked at each other with puzzled looks on their face.  The senior cardiologist told me it was a good thought, then tried to stammer out an explanation as to why the surgeon is doing it in the other order. It didn't sound very solid, but we respect these two and we accepted it.  But when the call came from the operating room informing us that the surgeon decided to do the valve repair first, Deanne had to smile at her brilliant husband. 

Surgery Update 1

 
Gideon is in surgery this morning.  This picture was taken yesterday - he didn't have this smile this morning.  He seemed to know something was up and he was a little melancholy. They are putting in a band to restrict the blood flow through the Pulmonary Artery to reduce the pressure in his lungs.  Then after they get that where they want it, they will put him on the bypass machine and start the valve repair.  That will be a couple of stitches to smooth out the opening in the valve so it closes better.  Then the base of the valve will be strengthened so it keeps a better shape. 

They took him in at 8:30.  Our first update came at 10:00.  All the tubes are in and he is doing well.  The next update will be around 11:30 and every hour and a half thereafter.  They don't expect him to be on the bypass machine until about noon.  The surgery will most likely last for 6-7 hours so that will be about 3-4 o'clock this afternoon Utah time.  He will be heavily sedated for at least a day while they monitor pressures, etc.  

Sunday, February 9, 2014

Smiles

 
Smiles are twice as precious when they come from a child in ICU and his mom who has been by his side almost around the clock for 12 days.  Smiles were nowhere to be found a couple of days ago.  On Wednesday, Gideon was moved up to the regular floor from ICU after the second cath procedure that was performed on Tuesday.  They wanted to wean him off the heart medication, milrinone which helps the function of the heart, just to see how he handled things on his own again.  That didn't work out too well. 
 
Deanne was with him overnight Wednesday and they both had a sleepless night.  All of the signs of struggle were returning throughout the day on Thursday - sweating, pale bluish coloring, and his EKG was showing different patterns.  Even the nurses were concerned.  The cardiologist on the floor was trying to tell us the EKG monitors were just reading the heart differently and there is nothing to worry about.  We felt totally uncomfortable with that answer.  Something was not right and had changed, but he didn't pay attention to the parental instincts.  He consulted with the cardiologists who were more familiar with Gideon's case and, Friday morning, the decision was made to get him back to ICU and back on milrinone.  We will request that the other cardiologist who gave us the bogus answer is not involved at all in Gideon's future care even if he is the one on the floor when he goes back. 
 
The photo above was taken Saturday afternoon after he was back on the "wonder drug" for about 30 hours.  It was also after Deanne and I were able to get out and do things normal people do for a few hours.  Hannah offered to babysit Gideon in the hospital to give us a chance for a date. That was so thoughtful of her.  We went to lunch at the Garden restaurant at the top of the Joseph Smith building, walked through the City Creek mall and bought Gideon the new clothes in the picture, bought a few books at Deseret Book then stopped at Village Inn for a banana cream pie.  It was 3 hours of normal life after just seeing each other for about an hour per day since entering the hospital January 29th.
 
The plan now is for the valve repair and pulmonary artery restriction surgery to take place on Wednesday and a 4 day recovery.  Another week of a crazy schedule, but Gideon is alive and is getting great care.  We are blessed to have him no matter how long that may be.
 
 
 
 


Tuesday, February 4, 2014

Catching up

Apparently Deanne and I have been a bit busy since I turned 50.  That was the last blog post anyway.  It must have something to do with recovering from two trips to China last year, a job change, the holiday season and, oh yeah, just having 14 kids at home to manage.  Another contributing factor is the way Deanne has ramped up her Facebook posts.  That has served as a major conduit for staying in touch and getting the most important stuff out there. 

As a follow up to me turning 50, I actually received my AARP membership request with the official cards in the mail Saturday.  I thought that stuff comes when you turn 55??  If youth is a state of mind, I am reminding myself that I have a two year old and I still play basketball with 20 year olds on the court without embarrassing myself, so I must not have one foot in the grave yet.  In fact, I often get compliments on my fade away jump shot.  I just don't tell them I have to fade away because if I tried to out jump them straight up, they would swat the ball into the cheap seats.

Now with Gideon in the hospital again, maybe it is time for some more detailed posts that would not be acceptable on Facebook due to the length required. I don't think Facebook has a restriction on the number of characters in a post like Twitter, but there is certainly an unofficial restriction imposed by FB etiquette. I don't know exactly what that is, but depending on what post you are reading, you know when you get there.

Gideon went through a catheter procedure and 3D echo this morning.  Last year when they went into his heart with a catheter to measure things for the first surgery, his heart went into severe arrhythmia 4 times that required him to be shocked out of it before they finally decided to stop.  We were a bit worried about a replay this morning even though Dr. Mart, the cardiologist, assured us that his heart was going to be fine this time.  The cath lab doctor told us that the procedure would be about 3 hours.  They handed us a pager and said we would probably not hear anything until it was done.

You can imagine our panic when the pager they gave us went off in about an hour. Of course, we allowed our minds to think of the worst possible outcome.  Even as I was telling Deanne not to think the worst, I had to fight the same temptation. The cath lab is on the 1st floor. We were on the 3rd floor in the family retreat area provided by the Ronald McDonald foundation. The stairs are closed for construction and that has put extra traffic on the elevators. Waiting for an elevator is never fun. It was painfully slow this time. We rushed through the doors looking for any clues of concern coming from the activity in the cath lab or the staff in the corridor. A nurse took the pager from me and shuffled us into a little room to meet with Dr. Mart.  He is a great man, skilled cardiologist and most likely a great poker player. His expression gave us no clues. As he started to speak, Deanne stopped him and said, "Is Gideon alive!?!?"  He said, "Oh sure.  Everything is fine."  He was surprised at our panic and continued his explanation about what they had found so far.  He had just completed the 3D echo portion of the procedure and wanted to share with us what he had learned as soon as possible.  His desire to get us the information before the 3 hours we anticipated scared us to death!  I don't think either one of us focused on what he said for the first 2 minutes. We were tyring to get our minds back from that dark place they went to after the pager went off.

The 3D color images of Gideon's one heart valve were amazingly clear and detailed.  Being able to see the inside of a beating heart like that is truly a miracle.  The hole in the valve was very obvious even to us. It has a dome shape with that expands to open from the middle (kind of like a shutter on a camera lens) when the heart muscle contracts the ventricle pushing the blood through it. When it closes it is all supposed to seal up.  Gideon's doesn't.  There is a small hole in the middle that allows the blood to come back through it.

Dr. Mart spent an hour with us explaining his opinion of what the surgeon could elect to do.  Other cardiologists stopped by to offer their opinion.  The surgeon had another opinion.  There was no shortage of ideas.  Here are the options as we understand them:

1.  We could do nothing. (Not likely) We feel like we need to do more for Gideon.
2.  We could give him medicine to keep the fluids under control.  Bring him home without surgery and watch for signs that the medicine stops working and the valve is getting worse. (This doesn't seem like a good option. The leaking valve seems to be the cause of the problem that got us here.)
3.  Repair the valve surgically this week. (Seems like a good plan)
4.  Repair the valve surgically in a few weeks after we see how he reacts to the medication. (We are not sure what the point is to this option if a repaired valve eliminates the need for the medicine altogether.  Why not just repair the valve now?)
5.  Repair the valve AND do the Fontan procedure at the same time in the next week or so.   (The Fontan is what he was scheduled to have in a couple of years as a follow up to the Glen procedure he had last year.  This option was suggested by the surgeon today and we kind of like it.  If we are opening him up, let's get it all done at the same time.  Right now, I am leaning this way.) 

These options (and maybe more) will be presented to the cardiology group Wednesday morning for discussion and the treatment plan will be decided after that.  We assume they will present their decision to us and we will have the final say in the matter.  That is when we hope we can be open to receive any direction coming from a higher Source.