Wednesday, March 31, 2010

Viewing & Graveside Service

We have finalized our plans for Friday. This is the tentative plan for now and any changes will be sent out:

Viewing:
Russon Brothers Mortuary (Bountiful, UT)
Friday 10 am

Graveside Service:
Laketown, UT (near Bear Lake)
Friday 1:30

There will also be a small luncheon afterward at a local church in Laketown.

For those of you who would like to come, please do but do not feel obligated to come. We love you all and again thank you for your continued support.

Anthony & Lynette

March 28, 2010

William Anthony Vance
February 2, 2010 – March 28, 2010

This past Sunday our sweet little boy passed away. It was a very tender experience for Lynette and me. I mentioned last week the challenge of being able to hand over the reigns and let the Lord take full control of our boy’s life. We had the opportunity last weekend to sit down with a member of our stake presidency and discuss the situation. We asked for guidance and he recommended we attend the temple. We hadn’t attended the temple since before Lynette was on bed rest and never felt like we could take a day and leave William. He told us that as we made the sacrifice that we would be guided and blessed with the direction we needed. We decided to take the first opportunity and went on Tuesday afternoon. The temple was amazing. We were never given any direction concerning his life and what was going to happen, but we did feel an incredible peace about everything. We knew that all would be ok. He was in the care of He who knows all and that whatever occurred would be His will.

As the week proceeded, William’s condition started to improve and the blood tests we’ve been monitoring for the past month or so began to be normal. We were so excited and felt like he was starting to make the turnaround we’ve been praying for. However, they did mention that one level was increasing suggesting a potential infection. They immediately put him on an antibiotic to help fight anything that was there. They did a blood culture and found nothing. The tests were repeated on Friday but cultures were taken from everywhere an IV or line was going into him. We did not get these results until Sunday.

Lynette has been attending sacrament meeting and then going to the hospital to be with William. This past Sunday was no different. To our surprise the doctor on call was a member from Houston on a monthly rotation here in Corpus Christi. He sat down with Lynette and told her that the results of the culture came back positive everywhere. The infection was throughout his body and that it was a matter of time before it took his life.

On Saturday, in preparation for fast Sunday, we were discussing the purpose of our fast. We let one another know that we didn’t want to see him in so much pain. Of course we wanted him to get better but he had had a couple of down days. We considered everything and decided that if the Lord was ready for him, that we were ready to let William go. We also decided to fast that I would have an opportunity to give him a blessing and that I would know what to say. It was a very tender moment between Lynette and me, but just like many times before we felt peace. We moved forward with the fast and an hour before church finished, Lynette sent me some texts asking me to be with her at the hospital. She at this point had been informed by the doctor about the cultures and wanted me with her. I showed up and met Lynette and the doctor and she informed me of his worsening condition. William didn’t look particularly well but was still stable. The medications and ventilator settings had all been increased and his lungs were not expanding due to the fluid build up. He didn’t look healthy and it showed. It was very hard to see him like this. I asked the doctor to assist in the blessing and we got some curtains to give us some privacy and gave William a blessing. We blessed him that he didn’t need to fight anymore, that he could rest. We blessed him that his Heavenly Father needed and wanted him back and that we (mom & dad) loved him. After the blessing I watched the monitor to see if he was showing any signs of change but nothing happened. The nurses asked us if we wanted anything and I asked if I could hold him.

They made all the necessary changes to set this up and I was able to hold my son for the first time. He was so sweet and seemed to do so well. Other than appearance and knowing what his most recent test results shown you would never have guessed he was so ill. It was a special moment for me. I loved holding him! Lynette was next to hold and as she was holding him the doctor mentioned about the different options we had as far as his life. We could let nature take its course or we could do things little by little. He told us that it wasn’t necessary for us to make a decision then but we both felt like we needed to say good bye. One of the hardest things through out this whole process was making the decision to stop the IV’s and stop use of the ventilator. We had feared that we would have to make it but hoped and prayed that William would be the one to make it. We did feel like it was right as we both felt he had gone through enough and that prolonging it would only put him through more pain.

Once the IV’s were pulled and the ventilator tube withdrawn we went to another room where we could be in private with our son. He slowly passed away but before he did, he was able to open his eyes and look up at us. We guess it was his way of saying goodbye. I can’t really describe the feelings we had at that time except for peace. Things happened very quickly but we felt it was the right thing. We were able to hold him for a time after he had passed away and then participated in cleaning him up and giving him a bath. We made some molds to have as a keepsake and dressed him and wrapped him in a blanket Lynette made for him.

We said our goodbyes and we then returned home. The feeling is similar to returning home after a sibling has just entered the MTC for his mission. It’s hard to think about knowing that we will not be going to the hospital to visit him. Our prayers are no longer centered on his care and health. We miss him! We want more time with him but not at the extent of damaging his body. We feel the void especially Lynette who was at the hospital most the day helping nurses attend to him. She helped change diapers, clean him, and get things set-up. Needless to say, we will miss him as we think about what we had.

Lynette and I were talking about his life and feel like all the promises mentioned in our patriarchal blessings truly pertained to him. Both of our blessings mention our children and that some will be missionaries. We have sent off our first missionary and must rejoice in knowing that he will not have any greater call and when we pass on, he will be there to greet us.

About the time of holding William, our OB/GYN was able to come and be with us. She has been such an incredible support through all of this as she has answered countless questions and concerns that both Lynette and I have had. We were truly inspired to be where we are to be with such a wonderful doctor who made having a child possible for us. We love her and thank her for all of her help. We would also like to thank our Bishop for his service and love for us. We have had many wonderful opportunities with him as he has assisted in giving William his name and other blessings. Our ward has also been so wonderful through this process and we want to thank everyone for the prayers, meals, and phone calls. We love all of you!

We love our sweet little boy. Thank you all for your prayers, phone calls, and temple visits. We especially want to thank all the cousins for their prayers. We have been the recipients of very tender prayers offered by sweet children. We just want you to know that William is better now and he is with his Heavenly Father. He accomplished all that he needed to here on Earth but know that your prayers were answered. William was supported by all of you and your fasts and prayers. Thank you for being amazing cousins to a boy you have never met.

We love you all and thank you for everything!

Sunday, March 21, 2010

He's been tapped!

I can't begin to describe what this roller coaster feels like. It is up and down all week but when you step back and think about it, he's been fighting for almost 7 weeks. His up's and down's have been the story of our lives and as we have fought to only go day by day it's amazing to think how the time has passed. We have had some amazing experiences with our little boy. The experience that I had, as his father, to give him a name. To watch him grow, to feel his hand squeeze ours, to change diapers, to see him overcome odds week after week, to see Lynette hold him, to see him open his eyes for the first time one by one and then both together, to see him improve. We have truly been blessed with a little boy who is special. He has such a strong spirit and when times seem at their worst, he rises to the occasion and overcomes them.

Our testimonies have grown so much. I know we say that a lot but they have. They have grown in faith, in Jesus Christ, in the Atonement, in the Plan of Salvation, in Temples, in inspiration. Our testimonies are so personal and I am so grateful that the Lord has sought to strengthen ours.

William this week has shown some progress followed by some serious struggles. We began the week just the same way we ended last week, worrying about the kidneys and the urine output. They began to work with him and there came a day, Tuesday, that they thought they may have to tap him to relieve the pressure on his stomach. They did not proceed but we had the chance to sit down with the Neonatologist and discuss with him our options. He proceeded to discuss with us the different outcomes to our situation and even told us what he thought would happen. He described to us that we need to consider our child and his quality of life as we keep him alive. It was difficult to listen to as he spoke and I felt myself becoming very angry with him, and just said a quick prayer to speak calmly the thoughts I had. I told him we know the odds, we know that he has a huge mountain to climb, and told him that we would not quit trying as long as William was fighting. We told him that William would be the one to decide when enough was enough. I can only describe the feeling I had as that of a missionary when he feels so strongly the message to the point of confounding the doubters. We asked for another opinion about the possibility of tapping into him and other options for helping William remove the fluid from his body. He did seem bothered by this but we don't care. This is our son and we want to know we did everything possible for him if he doesn't make it. After this discussion, we began to see some improvement in his kidneys. He began to urinate with a little more regularity but not in large quantities. Then on Friday and Saturday he all but stopped and he began to swell up even more. His stomach was pushing 32 cm (2.54 cm in one inch) and his face and body were so swollen. This morning we received a phone call from the Neonatologist on duty. She explained that all the swelling was pushing up on his lungs and as they increased the ventilator settings it was doing no good. His lungs were unable to expand all the way. They told us that we needed to do something immediately to remove the pressure. She told me that they would tap into his stomach and begin to drain the excess fluid so the lungs could expand and profuse his body and organs. We said they could move forward and knowing we couldn't be there went to Stake Conference. We did, however, ask them to call us when it was done. They called us in and we were able to see his stomach so much smaller. He is supposed to be around 800 grams (460 grams in a pound). He was over 3 pounds and after tapping into his stomach, he has lost almost 400 grams of fluid. It was incredible, but the most amazing and wonderful part is that he began to urinate very well. Whether it was the pressure on his kidneys or what, all we know is we are extremely grateful for this change. We did find out that this wasn't just a simple procedure to remove fluid but a very critical procedure to make sure he still has a balance of fluid in his body. He is having problems keeping fluid in his blood vessels. They call this capillary leakage. If the fluid is not thick enough it will seep into his tissue and to his skin. When he was at his biggest, his vessels were very full and his heart had enough volume to pump and keep circulation. When the excess fluid is removed, this changes and the volume in the vessels changes and if it gets too low the heart will work even harder until it eventually wears itself out. We were shocked to hear this because they didn't tell us this when they called this morning. But we got to experience it first hand this afternoon. After returning to the hospital from conference we began to notice his blood pressure decreasing. He is usually in the 30's to 50's and began to drop into the 20's. I then noticed his heart rate drop below 100 but it came right back up. This is something we have seen multiple times and isn't too much of a concern. They do try and keep him between 120 - 180 bpm. We kept watch of his blood pressure and saw it drop in the teens. With this change we started to see his heart rate fluctuate more. The nurse saw the problem and worked very frantically to get more volume in his blood. His heart rate then dropped to about 65 bpm and I pulled Lynette away from his bedside and allowed the nurses to get him going again. It was so surreal. They got him stabilized but we then were very aware of the concern that they had mentioned. He is being watched very carefully and many are doing the best they can. We are so grateful for those doctors and nurses there who were able to help him recover and stabilize him. It was truly an answer to prayers.

I don't mean to scare you with this post or make it seem that he won't make it. We don't know. But we will be faithful and whatever the Lord see's fit He will do. It's much harder than I thought to fully hand over the reigns. He knows the path and how to get us there. He's been there before. We just need to trust Him. I always thought this meant believing in him but it quite literally means to trust that He knows what is best. Our Father in Heaven has a plan that some day we will understand in detail. As of right now, we must live day to day enjoying what is ours to enjoy. He blesses us in so many ways that I am starting to see more of them daily. The small things. The improved kidney function, the stable day, Lynette and I sharing our thoughts about him, talking with doctors, and friends about him, hearing how he has given faith and hope to many around him, and how Lynette and I have been considered a strength to others as well. Even though there is so much good, I still find myself reluctant to give him everything. That is our challenge, to fully trust in the Lord and let him lead us to an eternal home. What a bright light at the end of the tunnel. He lives, we know it!

Friday, March 19, 2010

"Sisters"

Everyone should move to Corpus and into the 2nd ward.
Last night Anth told me we needed to stop by a lady in the ward's house to pick up something. As we drove up to her house there were a lot of cars parked outside. I tried to talk Anth into coming back another time because it looked like something was going on but he said we'd go up really quickly and it'd be ok. As we knocked on the door I looked through the glass and saw a couple of ladies from our ward. Then as the daughter of the lady opened the door and invited us in I saw a couple more. I still was clueless and apologized to the little girl and asked for her mom. She told me to follow her and led me into the family room. Around the room and in the kitchen sat and stood the sisters from my ward. They all shouted "Surprise!" It was a party for me. I was so shocked! It was such an overwhelming feeling of love and support! It's been a hard week; Will hasn't really gotten worse but he hasn't gotten any better and a few of the doctors have talked to us about how far we want to go with all this and when is enough, enough. It was a wonderful night of eating comfort food (chocolate fountain included), talking and laughing with good friends that I really needed. The sisters all brought me something that they do/enjoy to pamper themselves. These little gifts touched my heart and are wonderful. I've grown up with so many sisters that it's been hard to not have them here with me during this time but Heavenly Father inspired these sisters to give me the love, support and laughter I needed. Thank you to all of you, I can't express how much last night meant to me.

Saturday, March 13, 2010

First Hold!

I thought I would take a minute and share an amazing thing which occurred today. Lynette had the opportunity to hold William for the first time. It couldn't have been more tender or sweet. We were given a book the first time we were pregnant entitled, "Babyhood". As we were reading the author shares about how much he loved his wife and how beautiful he thought she was shortly after birth. I must admit, when birth came and went as it did, I was in complete shock but I am sure Lynette looked gorgeous. But I will say that I have never seen her look so beautiful as she did today holding our little boy. She's a mother! No one can take that away from her. To see her holding this baby was incredible. We shared in some tears and were so overcome by the whole moment. It couldn't have come at a better time. I have some pictures and movies of the event so take a look and enjoy.

We have had a pretty rough week. William started to suffer a bit last Monday and began to require more assistance. I believe last week he was eating, off meds, and doing exceptionally well. Monday came around and he stopped eating, got back on meds, and required a lot of help from the ventilator. I left work on Wednesday to go talk with the doctor in the NICU and he was less than cheerful. Summarizing what he said, he said Will would most likely not recover from his issues. As a result, he said he would probably die. Lynette and I broke down in tears and had a little discussion with Will to tell him what the doctor said. It was a difficult moment.

We have found out that Will's kidneys and liver are in pretty bad shape and have only limited function going on right now. The kidneys stopped passing fluids and he swelled up again. They put him on Dopamine to help get the blood pressure up and gave him some Albumin and Lasix to help him start urinating. This is very important obviously because if he doesn't he will not be able to remove the toxins in his body. The swelling in his body is due to fluid not being kept within the blood vessels. This is a cause of his poor kidney function. His liver is supposed to make a protein (Albumin) that helps draw fluid into the vessels and keeps it there to keep the body working nicely. But his liver is not working very well. It is having a hard time keeping up with the demand his body has right now. We could help his liver by giving him breast milk but he can't have it due to the function of his digestive track. He runs the risk of rupturing the intestinal wall and causing infection. So, the one thing that helps him will also hurt him.

I was able to talk with a doctor on Thursday who was not so pessimistic. He told us that his biggest concern was to get his kidneys going. He says that he isn't overly optimistic nor pessimistic. He said he was stable but had a long ways to go. He was upbeat and very good about explaining Williams needs. Then on Friday I came home to find William with a team around him to taking x-rays of his chest. He had a lot of garbage suctioned out of his lungs and it was yellow. They took it to go get cultured and tested for infection.

He is doing much better now and the cultures have come back negative for the first day. So, after all of this and hearing everything this week we had such a complete opposite today. It was such an amazing thing to see and ranks up there with the top moments of our lives.

We love you all and hope you are all doing OK. Again, thank you for the prayers and your faith.






Friday, March 5, 2010

Shunt-less...for now

Will made the move to the new hospital successfully! It's a much bigger NICU, instead of the 16-18 babies there are over 40. I miss the small-everybody-knows-you feeling, but we are grateful he's where the specialist are and can get the help he needs.

The Dr's have decided to wait for a bit before they put in the shunt because Will's kidneys and liver are pretty well "shot." One Dr. told us that he's too little and too sick to handle surgery right now. They are trying to help him with meds but pretty much they just need to start working and heal themselves.

Here's a picture of us with Will at his new place.

Wednesday, March 3, 2010

1st Field Trip

Will is being moved to the Children's Hospital here in town because he needs a shunt put in soon. His latest head ultrasound came back worse so they consulted a neuro surgeon who wanted him moved to his hospital to do the surgery. We're not sure if he'll remain there but we'll see.

We took this movie clip while preparing Will for his first field trip.

Monday, March 1, 2010

One Month

Will doesn't actually turn one month until tomorrow. But holy cow! ONE MONTH!! There were days I wondered if we'd get this far.

Will is doing "OK." That's what one of our Dr's told us. After he was born they expected to finding bleeding in his head and didn't. We really thought we were past that concern but last weekend after Will pulled out his breathing tube they did a head ultrasound and found a level 3 bleed (they grade them from level 1-4, 4 being the worst). This now adds all kinds of concerns to our growing list. We're watching his head for swelling and will cross that bridge when/if we get there.

Our other main concern are his kidneys. He's been on a crazy cycle where they'll work and then they'll stop and then they'll pick up again. During the non-working time he retains fluid (edema) and gets all puffy. It's so sad to see him that way. They think he weighs a little over a pound now but with all the water weight about 2 lbs. (Don't think I don't try to encourage him to go, I often stand over him saying "think about waterfalls Will, tinkle, tinkle, running water, rivers, etc." I've also threatened to put his hand in warm water. I think it works pretty well.) The Dr's and nurses have been working with the meds to find what helps him. Today he is going pretty well so we pray that it'll continue. (Who knew you could get so excited about someone going to the bathroom?)


This was taken last night, Feb. 28. He's gone a lot but still needs to keep going!


This is one of his "not going" days, Feb. 22

We are still taking it one day at a time and loving every minute we get to be with him. He is such a fighter and we know that his faith is amazingly strong. Thank you to all those who are praying for him and please know that your prayers are being answered; he's a month old!!!