Tuesday, December 30, 2008

Carl Lavar - Our Stillborn Baby Boy

December 12th - Ultrasound

Danny and I had a level 1, 20 week, ultrasound. The ultrasound that with Scott and Tyler we looked forward with anticipation to see if it was a boy or girl. Our feelings going into the ultrasound were a little different because of Tyler. I think when you have past experiences with a problem detected in a prenatal ultrasounds or even a child with a defect it changes your feelings towards ultrasounds forever. You realize that the real reason for this test is to determine if there are problems. Prior to the test we talked about our feelings. Danny was nervous that there would be another heart defect. He was prepared for something, probably not as severe as HLHS. I had hope that the baby was going to be fine, but I still had a lot of anxiety and worry. Those are feelings that I will probably always have because of Tyler. We were not expecting something as severe brain malformation. We left, I cried, we awaited for the phone call. The call came, it was a devastating diagnosis, but we were able to deal with it. I wrote more about my thoughts on this in an older post.

December 18th - Level 2 /Change in Diagnosis

The radiologist thought the diagnosis was less severe than originally thought. She thought all the brain parts needed to be viable were probably there, but pushed forward due to a large cyst. It was obvious to our eye that there was a very large portion of the brain that appeared to be absent although you are hopeful that maybe it isn't that bad. We had split emotions. Danny thought this diagnosis was worse in many ways. Now he was faced with the emotions of having a child with a severe neurological defect that affects the family in many different ways. Seeing a child suffer, in a vegetative state is a very hard thing to deal and cope with. In some ways we thought having a child die would be easier on the child and our family than having a child with severe neurological problems. Nobody had answers or would have answers until we did a brain MRI. We were told by our radiologist to set up an MRI and echo. The radiologist said that the MRI would be in the 3rd trimester. The genetic specialist said after the MRI we would sit down with a neurosurgeon to discuss surgery possibilities and neurologist to discuss quality of life issues. We were reminded that even after an MRI, quality of life might not be predicted until the baby is actually born and we see the actual implications.

December 19th - Appointments

Fetal echo is planned for the following Tuesday. Fetal MRI is planned for the 1st day that the doctor returns from vacation. We felt some relief that the tests were being done as soon as possible and we would have answers. At the same time you know when tests are done as soon as the doctor returns or within a couple of days that something is wrong. Regardless, we knew something was wrong and I was so releived the waiting game would be short. Somehow with this child compared with Tyler the waiting game wasn't as bad. Maybe my patience has grown which would be a miracle. Maybe it is having faith that it will work out. In some ways having Tyler helped with this situation because you know that the Lord will lift you and you understand that these children and their lives are in his hands. We experienced loosing Tyler after his first surgery and although he came back to life, we were filled with peace and a knowledge of the plan of salvation. So often it is the anticipation that is worse than the actual event.

December 23rd - Fetal Echo/No Heartbeat

I went into the fetal echo and the doctor was perplexed what the baby was doing so low. He moved the baby around and said that things didn't look normal. He didn't know what baby was doing. After a short period he said he had a sinking feeling in his stomach. He couldn't find a heartbeat, baby was all scrunched up. He asked when the last time I felt the baby move. I thought about it and I didn't know. The baby moved at night so much but it could have been days that I haven't felt him move. I remembered him kicking Tyler really hard when I was holding Tyler, but I didn't know when that was. The baby had passed. It was obviously sometime from Thursday to Tuesday. He said there is generally movement after the first day of the baby passing and there was none. His heart was all closed up. Dr. Disai was so gracious and loving. He let me see the baby and what he saw. He said that the skull formation didn't look right to him and asked what they told us. I explained the different opinions. He said it just doesn't look like the brain or cranium is complete and was sunken in. He got my OB on the phone and we chose to induce the following morning.

December 24th - Induction:

They started me on a vaginal suppository that was supposed to get contractions going better than pitocin in earlier labors. They gave them 4 hours apart. I explained that as soon as my water broke with Scott and when they broke my water with Tyler I had them pretty quickly. I just let them do there thing. It crossed my mind that maybe it would be way longer than expected and this baby would bless us on Christmas. My baby of Hope. My sister and Danny were at the hospital. It was great having them there. We talked, laughed and enjoyed a very special and sacred day together. There was so much peace and joy in the room. Finally at 11PM they broke my water and started me on pitocin. At 1:30AM the baby came.

December 25th - Day 1: Birth

When we had the baby we were filled with peace and comfort. When having a stillborn child you are given many options. Some families opt not to see or hold the child. Some families wish to have pictures taken to see him or her at a later time. Some families wish to hold and see their child. Danny and I looked forward to seeing our little guy, holding him and taking pictures. They placed him on a cloth and gave us time to be with him and each other. We knew his spirit was no longer in his body but felt his spirit present. He was really malformed. We had looked at stillborns at 20 weeks on the Internet to prepare for what to expect, but he didn't look like them.

The front of his cranium had formed a little, the rest of his head was fluid filled. One eye was open just a little and the other hadn't fully formed. His pallet protruded which Danny noticed on the first ultrasound. His nose was malformed. He was small. He was the size of a little Christmas bear we brought for him. He was 10 1/2 " and weighed 12 oz. You could feel the bones in his legs. His feet prints are about the size of a quarter. It was so good to hold his little body. We felt so much love for him. It was so good to have pictures with him. I look at them sometimes.

I couldn't think of a better birthday for him to have than that on Christmas. It is one of the tender mercies of the Lord. For me, the Lord was reminding me and will forever remind me of the miracle and promise of Christ. I know it wasn't a coincidence that this is the day he was meant to be born. This child received his body, which had so many problems, but one day he will be made whole through Christ. After we held him and took pictures, we let the nurse take him and we felt extreme peace. It wasn't supposed to be any other way and the Lord was mindful of our needs and desires. This child didn't need to suffer. We didn't need to endure anymore of the unknown with unnecessary tests, doctors visits or completing the pregnancy. We experienced so many different emotions which helped us gain empathy and compassion, but never had to see this child suffer, go through brain surgeries, live a hard life and all that that entails which we are grateful for.

We were grateful we were able to hold and see him. It made us realize that he is very real, but had major problems and was just not meant to endure all that most have to endure in this life. When Danny and I were alone we prayed to the Lord and felt the sweet words of this little boy. He referred to us as mom and dad, reminded us how much he loved us and reminded us that he was in a better place until we would see him again. Those are words that I will forever cherish and hold very close to my heart. More tender mercies of the Lord. That he allowed us to feel of his spirit and hear his words. I had received blessings during the pregnancy and certain things will reminders give me added strength and comfort. I was reminded that God's view is eternal. It has no beginning or end. That we were blessed with this child because of the extreme love that we have for children. That this will help us be teachers to others. We are all asked to go through our own hard times and trials. This has been hard, but we would never change it. We have grown closer together, felt each others love more powerfully and come to understand the power of the atonement and viewpoint of Christ and God more fully. An experience like this someone allows you to get a glimpse of how God sees things so differently than we often see them. I know the things we sometimes worry about and what answers to in this life are not going to be of importance or relevant in the next.

We slept a couple of hours at the hospital and asked to be released when we woke up around 7. We looked forward to going home and being with our boys. We recognize and empathize with people who go through this experience without other children or who have infertility and my heart goes out to them. It was so great being with the boys and later with the family. They brought us so much joy and happiness. We seemed to treasure them and hold them just a little more today than ever.

Day 2: December 26th: Christmas with the Boys

We woke up and headed to my parents house for the boys to play with their toys from Christmas. We looked forward to a relaxing day together as a family. One of my best friends was in town with her husband and we got to spend the entire day with them which was so much fun. We were both very much at peace and feeling good. They hadn't heard about the baby and it was good to talk about things and share friendship. We went to 4 Christmases which was fun to do something and had a great day.

Day 3 - December 27th: Mortuary and Cemetery

Saturday morning we went to the mortuary and cemetery which went well. It was a relief to feel good about the places we chose. The only hard part was when we talked about options for having a plot next to the baby. I realized we can't predict the future, how long Tyler, or any of our children are with us. The reality of HLHS becomes a little more real in situations like this. I am grateful we are able to live and enjoy the moment instead of always thinking about Tyler's heart. We are really at a point that we don't think about that anymore. We found a cemetery that we love and can somewhat afford. Who knew dying could be so expensive? The first cemetery where my grandparents are buried was close to $6,000 to bury the baby. We found a place for about half that cost which we love. The casket Danny chose was a little too big for one baby plot, so we got that changed to a smaller, simpler one which is fine. Things that you just don't think about in situations like this. The mortuary was so kind and basically providing their services for free.

We found a cemetery that we love. It is smaller and simpler. It has a huge place for LDS families, although we chose to bury the baby in an area on a hill that we thought was prettier. While everyone else probably doesn't love the surrounding area, the junk yard and airport, Danny loves that and so do I. You don't see the surrounding area, so it really doesn't matter, but is pretty cool that Danny's hobbies surround the cemetery. Danny said he chose our family and must know that I love these places so what better place? That just makes me happy. Scott loved the planes that were overhead. It was just perfect for us and that makes me happy. We went home ready for lunch and naps and felt good about our morning and the details that were being arranged.

Day 3 - Afternoon: Depression, Milk and Hormones

My milk came in and for me the hormonal nightmare began. I was in so much pain, my boobs felt like they were going to explode. The physical pain was everywhere. I could barely pick up my children. If this is what a breast augmentation feels like, I wouldn't recommend it. I read what to do and everyone has a different suggestion and time frame of pain and milk production. Some decide to donate their milk, some pump occasionally to relieve the pain, some wrap themselves as tight as possible, etc etc. Some women talk about this process lasting months, which just wasn't what was best for me or my family. I think if I had someone close to me who needed the milk that would have been good, but I don't, and I really didn't want to deal with pumping when I had Scott, Tyler and Danny to give that time and attention to. I wanted to get back to normalcy as soon as possible.

As if the physical pain isn't bad enough, the emotional pain of those hormones was probably worse. The combination of the two made for a very interested time to say the least. I would cry at the thought of not being able to hold Tyler and nurse him when he was born. All of the emotions of having such a sick baby came back to me. I thought back to holding Scott with Danny after he was born. It was such a joyous time, filled with love, happiness and peace. Looking back, we took those moments for granted and just assumed they came with childbirth. It was so hard to deal with not having that opportunity with my last two childbirths which is hard. The positive is that you realize pregnancy hormones and nursing attachments are very real. I remember going to Tyler's nurse when after 5 months and no sleep I just couldn't pump anymore and just crying and feeling so bad. It was so good to hear her tell me it was ok and realize that hormones are very real. I would cry without knowing why I was crying. Be sad not knowing why I was sad. I have never dealt with depression, at least to my knowledge, but assume this is what it is like. Danny said all evening, "Heidi, you are going through post-pardum depression." I thought, logically, I am at peace about the baby, which I am, but still dealing with all of the emotions, hormones, pain of having a baby who is no longer with us physically.

My sweet husband just wanted to help. For him, it was so hard because he wants to make things better and just couldn't make me better. That made him sad. His way of dealing with things is by doing hobbies or working on his car, which I think is great. It is so important to realize that we all deal with things differently and that if something makes us feel better that is great! Go and do it. I felt better most of the time being with the kids and being mom. The night was very painful and I decided that I would find my pump in the morning and pump because the pain was too great. I worried about how long these feelings would last. Post-partum depression was something that I worried about when I found out the baby would be stillborn. I didn't know what emotions I would feel. I was so relieved I was happy and at peace and wasn't expecting this on the 3rd day.

I was grateful for a husband that realized this was very real, although neither of us knew how to deal with it. I realize how serious and debilitating mental illness or depression can be and feel so blessed to live in a time that mental health has so much to offer. We have friends and family that deal with depression and now that I have experienced a glimpse of what that can be like realize how important it is to deal with it in the appropriate ways by seeking help.

Sunday December 28th - Day 4:
Hormones/ Feeling Better/ The Plan of Salvation

Luckily I felt a little better today than yesterday. My pain was still very real, but my pain and hormones were getting better. Little things, ridiculous things still made me sad. I guess they aren't ridiculous if that is how you feel. We went to church and knew that some people would know what happened, while others wouldn't. We thought the easiest solution for us was for them to just make an announcement that we had a baby boy born stillborn on Christmas. They make baby announcements and I thought that would be fine. We still considered him our baby and considered that his birth was very real. Well, they dismissed it and nothing was announced, which made me sad. In some ways I felt invalidated. I felt I had this 14 hour labor, stillborn child, one that I feel I will have the opportunity to raise, have to bury but disregarded as nothing. I am sharing this so others understand or maybe can gain knowledge, not sharing it to make anyone feel bad or think that it should have been any other way.

First, the leaders have very real reasons for choosing to do what they do which we totally understand. There is not that much doctrine in our church about these things. Much of having a miscarriage or a stillborn is a very personal matter between the mother and the Lord. I remember writing a paper in religion class in college that I felt very strongly about and still do. It was on loosing a child and the promises hereafter. Several religion teachers told me I should send it to the ensign, which I didn't, but while writing felt it was inspired. Those feelings have stuck with me. I don't know where that paper is and don't know if I will ever find it but grew in understanding from that assignment. Many of the same feelings and research from years ago came back to me and I heard again from leaders as were faced with having a stillborn child. I don't think that experience was a coincidence.

We were told, although not doctrine, that the spirit enters the body and the mother feels that presence or movement. I can tell you from my 3 pregnancies that I have been able to feel the presence of all of my children when I was pregnant after a certain point in the pregnancy. We were told that a stillborn child is different than a miscarriage. That we will have the opportunity to raise our child in the next life. Now, with that said, it is such a personal and private matter. I think many of these details that helps us with grieving and coping in this life, are probably not as significant in the life to come. Although we do feel we will have the opportunity to raise this child in the next life, we do have hope and peace that things are just going to happen and work out how they should which brings us added peace. We can't understand everything and all the details, but do know that the Lord loves us and things will just work out. I think that that is how a lot of things are. I do think that through pondering, reading words of the prophets and prayer you can receive comfort and certain answers to questions or concerns. I have done that I do feel peace and do feel I received certain answers for my specific questions.

At times I think that we are also just asked to have faith and maybe will never fully understand why something happens how it does but need to have faith that the Lord is aware and will make it right. To make matters harder, people somehow heard we had another child with a heart dfect and Danny had to explain that we actually had a stillborn with neurological problems. Some people gave glances of sadness, not knowing what to say or if they were even supposed to know. I felt bad for the entire situation. Some wanted to talk about Christmas in which we responded it was fine. I just wanted to tell everyone, we are fine, this is what happened, thank you for your thoughts. They will make an announcement in relief society and priesthood next week which should help. Things like this, that seem so insignificant, just get to you in ways that normally wouldn't.

Day 4: Night. The Importance of Communication!

I came home, talked with Danny how I felt sad, which is so great to talk about. I am usually not one to talk about everything I am feeling but have found it very therapeutic to talk and share with Danny and write things down. Hence, this novel. In someways I don't feel so crazy, it is nice to share with someone and work through those feelings. You also come to understand what the other needs and how you can help. I feel we have grown so much in our communication because of these experiences which is so great. In times like this you realize that people just want to help and often don't know how or what to say. We have found and learned that it is ok to put our emotions and needs first during these times.

Everyone has been very gracious and understanding of that. Thank you so much. That means so much to us!! Someone was asking me at church about things and had to tell them I wasn't ready to talk about things right now. Abot 20 minutes later I was able to talk about it and it helped. I was grateful that she understood, didn't press the matter, and was willing to listen and talk when I was ready. I appreciate that!

We have been very open as to what makes us feel better and what doesn't. Neither of us felt good to hear about other people who have it worse or someone who had a miscarriage or child with a cyst. At times it helped me to hear about other experiences, but generally wasn't the first thing we wanted to hear. For us, it just wasn't relevant to our situation or what we needed or wanted to hear first. I am sure that makes others feel better, but it just didn't make us feel better. Maybe it isn't the most Christlike thing to let someone know what helps and what doesn't, but we felt we needed to put ourselves first during this time. I hope in 20 years from now I have more humility and get better at this. At the same time I think that the Lord wants to surround us with what brings peace and how we can be best nurtured.

I think this has been one of the hardest things for Danny. He has a really hard time communicating sometimes and thinks that communicating his feelings will mean that people understand and are able to communicate the correct things back. You realize that that isn't always possible for some.

The Father - Emotions of Danny from my Viewpoint

Being the father is a very interesting role in all this. They are just as much a part of making this baby and being their parent. The father never gets to feel the baby kick or understand the attachment that the mother has with this baby just like I can never fully understand the attachment Danny feels. In some ways that makes it harder for the father. So much of the care and concern and attention goes to the mother because they are the one carrying the child. There body needs to heal, when people talk about the child it is more evident in pregnancy that it is the mothers because she is the pregnant one.

From the moment we found out about the baby's brain, people were so kind to tell us that they knew we could get through it, the Lord must trust us with this child and our strength and faith would carry us through. Danny and I were appreciative of those words and comfort. Some people are able to lift you and express that they are amazed at the strength you have. These reminders lift you up and realize that Heavenly Father has and will continue to bless you with all the strength you need to get through what lies ahead.

Danny has yearned for that from certain people in his life the past couple of years and for some reason or another just hasn't heard what he needs to hear. This is such a hard and real thing to deal with that always surfaces at times of crisis. Some people try, or just dont know how to express these words, perhaps they are just not good at expressing how proud they are of him, for the husband, father, person, son, dentist, and all the roles that he is and yearns to hear from them. We had a friend come over who so graciously listened to him and what he was suffering from and who told him that he just might never hear the direct words, validation and feelings that he needs to fill this void. So what do you do? At some point you have to find a way to move on, be at peace and fill yourself from a loving Heavenly Father. I do think he can make us whole in places where we feel vacant. I think that is one of the hardest things in this life. You can tell someone what you need, they might be trying their best but because of their past, a misunderstanding or just unable to fill that. At some point you have to heal from that which I know is possible through the atonement. Possible through knowing that you are loved by as a son or daughter of a very real and loving Heavenly Father.

My Body Healing

I knew that the Lord could take the engourgement pain from me and regulate my hormones. I rarely ask for a blessing with the expectation of something happening, for it is always according t the will of the Lord and I know He knows best. I felt very strongly that through my faith the Lord wanted to heal these things in my body. Danny gave me a blessing, I was blessed with these things and so much more. I am grateful for the priesthood. We feel that the power to heal is on the earth again and I have felt that healing power, as well as with time of healing, my bodies hormones normalize and my milk production decrease. Monday and today have been really good. I have had the opportunity to write everything down. Danny and I got to go to the movies and dinner yesterday thanks to my parents.

The Future

We await the autopsy results. Obviously, we assume that the cause of death was related to the malformation or absence of the brain. Who knows if they will come up with a certain syndrome or diagnosis. Chromosome tests have the chance of growing or not growing. Conclusions should be made within the next 1-2 weeks. At that point we will sit down with our genetic counsilor and possible genetist and go over the implications of Tyler with HLHS and this child with a neurological disorder. The possibility of them being linked or it just being one of those crazy flukes in life of having two children with unrelated and very severe diseases. My gut feeling is that they won't be able to link these two things together, even though I could be very wrong. Maybe that is just my hope.

The thing about medicine is that you just never know. Answers are hard to find. Research continues to search for cause and probability. But with all said and done a God is over all, has a plan and perhaps we were just to learn and grow from these experiences. This I do know. That we were to have a healthy child, one with HLHS and one who didn't need to stay in this life but who did need a body for the resurrection. I don't know if answers will be found. I guess time will tell.

Answers help research and the whys in medicine. They help us with family planning. I want to try for another baby sometime, but we will have to see. If the probability of having a child with another severe medical problem is likely to happen, that just might be fair to my other two kids. I want a large family and maybe adoption is the way that we will be blessed with that. I do know that prayer will and has always been a part of every major decision that our family has made and will continue to make. I am comforted by that. I don't know what people would do without that. So time will tell, healing will occur and sometime in the future we will know what we want to do about our family.

Although I realize that healing, mourning and grief is a process, I do feel extreme peace and love from my Savior. My body feels more normal. I feel so many blessings and tender mercies of the Lord. One of the greatest blessings is that I was able to experience so much to gain empathy and understanding and grow, however, nothing was dragged out. I experienced very real post-partum depression when my milk came in which lasted a little over a day. That is a miracle. I understand that it is important for me to be very aware of my feelings in the months to come because who is to say that those feelings willn't return. I don't think and pray that they won't but it is always important to be aware of your mental health.

This experience has been hard. I tried to be as candid as possible. It has been a time in our life filled with spiritual growth and love. It has been one of marital growth. I wouldn't change it. I feel blessed the Lord has blessed us with a third son and all that that entailed in his short journey with us. I know he will be a ministering angel to our family. I feel blessed for the amazing family, children and a spouse who is my rock that I have. This is my journey so far. I hope and pray that this peace remains with me. I look forward to the burial on Friday. We want it to be a very simple ceremony and I know that we will have memories and remember the spirit that is there for our lifetime.

Saturday, December 27, 2008

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I LOVE HAVING A 2 YEAR OLD!!!
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The unexpected things that they SAY and DO
can fill your heart and soul with unexplained
JOY, LOVE and LAUGHTER
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We went to the cemetery and mortuary today and of course Scott wanted to know why. We briefly had the great opportunity to explain that the baby in mommy's tummy is now with Jesus. When I came home I was working on a scrapbook for Baby Roman and Scott and I had this precious conversation,
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"Scott, who is this for?"
"Baby Roman."
"Where is Baby Roman?"
"In Heather's tummy."
Where's mommy's baby?"
"He is with Jesus."

Thursday, December 25, 2008

Carl Lavar McMillan


Our third son, Carl Lavar, blessed our family on Christmas morning.  A fetal echocardiogram on December 23rd showed no heartbeat, I was induced at 11AM on the 24th and he was born stillborn at 1:15AM on December 25th.  We couldn't think of a better birthday for him to share than that of our Savior.  It will forever be a day of hope and celebration for our family.  We know that through our Savior we will someday be reunited with and have the opportunity to raise our son.  We are comforted that he didn't need to suffer in this life and that through Christ his imperfect body will someday be complete and whole.  It was a very spiritual and peaceful experience for us.  We are humbled and grateful that we were chosen to be his parents and were able to help provide him with a body to complete his mortal mission.  We felt the presence of Carl's spirit during his birth and were blessed with words of comfort that we will forever cherish.  

Wednesday, December 24, 2008

Polar Express


caboose
Neither of the kids wanted his picture taken with Santa




The whistle was "TOO LOUD!"

Scott and I went with Erik and Charlie to the Polar Express steam train in old Sacramento.  It was a one hour ride dedicated to the Pixar production with Tom Hanks, so all the kids were in pajamas and there was "hot, hot, hot, hot chocolate" singing and a visit with Santa Claus.  It was a lot of fun and I was impressed at how effortlessly the steam locomotive pulled us.

Sunday, December 21, 2008

Happy Anniversary!!

Four Years ago we started our journey here, in the Bountiful Temple, to be married for time and all eternity. We didn't know what life would have to offer, the blessings and sacrifice of the journey or the joy of parenthood. We went into marriage with what we thought it would be like, but I think that both of us would agree, it has been a journey filled with more growth, love, blessings and reliance on the Lord than we could have ever imagined. It truly has been a wonderful beginning! I feel blessed to be married to such a marvelous husband. I can't describe what a good man he is to me. My love for Danny has grown and has lifted me to become a better person. He has helped me find joy in all of life experiences, both easy and hard, that only he, as my husband and the father of my children, can truly understand. I love you Danny and look forward to another great year with you!!
Bountiful Utah Temple - December 18, 2004

I love this picture!! It just shows the happiness that we both felt. A feeling I will always remember.

Honeymoon in Cancun. What a fun and carefree time.

We were separated for the first 2 months of marriage as I finished up swimming and school at BYU and Danny was at dental school in San Francisco. We learned to cherish the other.

Blessed with Scott! I traded in a great medical sales job to be a mom which was the greatest blessing in the world. The Lord blessed immensely!
Danny worked so hard, grew a lot and had fun in dental school. We were so proud of Danny!graduated from dental school and has worked so hard ever since.
Visited Spain where we both served missions. What a blessing to have the experiences and growth of our missions as part of our marriage. So many aspects of our marriage has been blessed because of our decision to serve the Lord.
Trip to Mazatlan with the McMillans. My favorite part of the trip was time with Danny and Scott. It was so fun to see Scott have so much fun in the water.
"Have joy in your mothering," whether you are the mother, the aunt, the grandmother, the next-door neighbor. we all have the opportunity to be a influence for good." -Marjorie Hinckley
Tylers heart has helped us understand the atonement, find peace in the journey and hope in Christ. We feel so blessed for our little man! Words can't describe how he has blessed us.

video

One of our greatest blessings as a family is that Danny loves his job. He has worked so hard for our family, finds joy and fulfillment in going to work. Danny has always blessed for doing what is right and relying on the Lord to provide for his family. It has been 2 years of growth and blessings.
Our little man was so sick for the first 6 months of his life which finally manifested itself when he turned yellow. Sludge in the gallbladder is no fun. This made me realize to listen to your instinct and to be advocates for your children.
Tyler's 2nd surgery.

Our greatest blessing!

"I am so grateful for the blessings that I have enjoyed in my life. i do not know why the Lord has been so good to me. I don't know why I have been so blessed. But I do know that the Lord has a right to expect a lot of me. Sometimes the commitment gets a little heavy and sometimes I wonder if i can really do this. Then I think of all that I have been given and it is easy to get up and do a little more." - Margorie Hinckley

Friday, December 19, 2008

Change in Diagnosis

We went for further imaging of the baby which resulted in different observations. Originally, we were told that baby would not survive because of absence or minimal brain development. Upon further scanning, we were told that the vacancy of tissue was result of a very large arachnoid cyst in the posterior fossa, outside of the brain, that has pushed everything else forward. Although not certain, it appears major parts of the brain are present. Arachnoid cysts have been compatible with life, but the implications of a cyst of this magnitude are unknown. These cysts are not uncommon and often not detected until symptoms occur. Arachnoid cysts are sometimes associated with seizures, migranes, balance issues, etc with people living fairly normal and uninterrupted lives. The problem and question at hand is the size of this cyst, a possible hematoma, and if all aspects of the brain have in actuality formed. Dandy Walker Syndrome and other rare disorders have not been ruled out.

Having received additional information, we are left with more uncertainty. The good thing is that it looks like the baby could survive while the bad thing is the uncertainty of the quality of life that this child will have. Everything is still very uncertain and we will just have to wait. Although, I would never change the outcome and I know the Lord is immeasurably blessing our family with this experience, child and his condition, it is a whole different set of issues and preparation having a child with major neurological issues. Neurological problems affect your family in very different ways as opposed to the feelings and mourning of losing a child. The feeling just can't be compared. Mourning is so different to all and so different in every situation. I do continue to feel so blessed to be the mother to this child. I have come to know his spirit and begun to understand the magnitude of his mission and being part of our family which you can never fully explain or comprehend until going through this. Tyler has blessed our lives in ways that a healthy child would not have been able to and I know this baby will as well.

We met with a genetic counselor who discussed future tests. Neurologists opinions and tests need to be performed before concluding a lot of things. We discussed the correlation of this and Tyler. She said that these two conditions don't appear to be related, however, it is hard to believe someone would have two children with such extreme problems. We will probably do some genetic testing on Tyler and ourselves in the next couple months, but I am doubtful that anything will be found. Although the heart appears normal, a fetal echo of the heart will be done in the next 1-2 months because of Tyler's condition. A fetal MRI of the brain is generally done in the 3rd trimester which should give us the most information. It will show with more clarity the size and function of the brain and cyst. An ultrasound will monitor the size of the head for birth planning. Although head size correlates with baby now, there is a chance of hydrocephalus, enlargement of the head due to fluid, which for now simply means a c-section would be planned.

It is amazing what ultrasound and prenatal testing can detect. How grateful we are for testing with Tyler and this baby. With that said, the topic of termination is always brought forth which makes me sad. It is such a personal matter and one that I would recommend all to pray about, seek counsel and seek other families who have been faced with this decision. Talking with social workers, you realize the emotional, physical and financial stress of a critical child. It often leads to very real familial stress. We have been blessed with faith, a great marriage and financial means to afford treatment, however, were not immune to any of these stresses. You don't fully understand the impact unless you go through it yourself. With that said, our family has had a greater positive impact than negative by leaps and bounds. We are blessed for all that we have experienced with Tyler as well as knowing we will be uplifted with all needed to help this child. Our faith, love, perspective and peace have increased because of these children. If I were to list my greatest blessings, not even comprehending every way that these children bless our lives, I would be able to tell you that Scott, Tyler and his heart, and now this baby and his brain are three of our greatest blessings one could receive. They have all helped us have a greater understanding of the atonement, what is really important in life, that God's view of time is so different than ours, and that He knows how to bless our family. I know that He will not give us more than we can handle and as we seek Him we will be blessed. There is so much that I feel and have experienced that I wish I could express in words of how blessed I feel.

Tuesday, December 16, 2008

My Boys

The boys have become so close in the past month or so which is so great and fun to see as a mother. For a long time Scott did his thing and Tyler did his. Now Scott wants to get into Tylers crib whenever he wakes up. Hopefully he doesn't smoosh him one of these days. I love the looks on Tylers face in this. He loves his brother.

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Tyler loves trains and cars. His favorite thing is to push his cars around the house making engine sounds. Do you think someone loves his brother and daddy? Tyler truly loves his dad. He wants everything to do with him and appears to be more attached to him than me lately, which is actually fun to see. Who wouldn't love Danny as a daddy?

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Tyler loves to eat everything with a spoon. This is such a magical age, full of love, happiness and exploration. It is so fun

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The joys of boys!

Monday, December 15, 2008

The past couple of days

First and foremost Danny and I are so appreciative for our great family and friends who have emailed, called and showed in numerous ways that they care. There are so many people who have no support system during hard times and we feel so blessed to have more people thinking about us and willing to help than one could ever dream of. So thank you so much!!

Friday and Saturday were pretty hard for the entire family. I felt like I was unable to function in many ways while I was just trying to stay afloat myself. Scott knew something was going on and of course agitated by it. While these feelings are inevitable, it helped me realize I have so much to be thankful for and two boys and an amazing husband who I am blessed to enjoy each day and who need me. So many would do anything for children and a great husband and the countless blessings and wonderful life we have. This has made me realize the many things I do have.

We tried to relax and occupy ourselves but it is impossible at times to not be saddened and depressed and hurting over mourning for the loss of the expected. The loss of a child you were looking forward to raise. You think about what the future holds with uncertainty and fear; 20 more weeks of pregnancy, the birth of a child who you know won't make it, implications of genetic ties, a second child who faces his own health challenges, other children dealing with something they don't fully understand and so much more.

I thought of a friend who is a psychologist for ill patients and their families. Months ago we were talked at the pool and I asked her what helps families the most as they are faced with a poor prognosis. She said no matter how long someone is given, it is important they get to a point that they are able to continue living each day instead of living to die. How true. How marvelous to enjoy each day as a blessing.

In church we talked about spiritual gifts. I am grateful that the Lord has blessed me with the gift of faith and testimony and so much more during this time. My heart aches for those who don't have that. I wouldn't be able to endure these things without that knowledge.

Amidst heartache I do feel extreme peace. I know it is due to blessings from heaven and prayers on our behalf so thank you!! I enjoyed a great day with my kids today. I appreciated the blessing of being a mother to them more today than ever which is a marvelous feeling. Scott wanted Tyler to eat with him this morning, he wanted to hold him, he pulled out an old baby mat and had Tyler lay on it while he played doctor and gave him hugs and kisses, he wanted to take a bath with his brother and wash his hair. They laughed so much, they made me laugh, they are so full of joy and it truly fills my heart and spirit. I have been blessed with two amazing little boys and I know the third will be just as amazing. How comforting to know that he doesn't need to come to earth for long to endure all that we endure. He is perfect.

On my mission I think I got to the point that I wasn't living for myself anymore but for others and it filled me. This experience has helped me gain a new perspective of the time I have with my children which I can't express in words. I feel peace today. That is a greater Christmas present than anything.

Sunday, December 14, 2008

Ultrasound Diagnosis

My blog with Tyler was pretty candid. I tried to share most of my emotions and thoughts, and for that, I am grateful to have a journal. While we don't have hard feelings, this is to record what would be helpful to us, granted, every story is different. We had our ultrasound on Friday and knew that something wasn't right. The tech kept leaving to talk with the radiologist, citing it on our "history." Danny asked very poignant questions, such as, "I don't see the brain. Can you show me the brain? Is the spine closed?" The tech skirted each question. Danny then asked, "Did you see anything abnormal that you need to talk to the radiologist about?" The tech responded, "there are some things that concern me but I can't tell you." This was difficult. We told her we would like a phone call, the anticipation was horrible for us and she promised that the radiologist would call with more information. We explained again that we had played the waiting game with Tyler and it was horrible for us. Danny reiterated that we had been told that in the past and would like a call as soon as they are able to tell us what they are concerned about. So we waited and no call came. Finally at 4PM on a Friday, I called and asked to speak with the radiologist. They were ready to transfer me and realized they had better identify my case. I tell them and explain that the radiologist was unable to talk to us at the end of the ultrasound because she was on her lunch break.

The receptionist left and returned, saying, "The radiologist is busy but they left a message with your OB who will get a hold of you with the results."

Frustrated, I sob, "We have been through the waiting game, that particular OB isn't in on Fridays and someone owes us the decency to at least tell us the body part they are looking at." I am grateful for the receptionist who tried again, put us in contact with the OB 5 minutes later, who apologetically gave us the prognosis. She told us they didn't want to give us the bad news on Friday because it might ruin our weekend. Can you believe that? I told her and am grateful to her for sharing the news, even though it was bad news. Being out of the "know" is the worst case in my opinion. First, it is not good practice to withhold information when stating and calling several times that we would appreciate to know. Second, others shouldn't judge when it is appropriate to deliver bad news. We are grateful for the weekend we had together. We cried some, we started the mourning process and have found peace and reassurance from the Lord.

Patients can read body language fairly well. Some can even read the ultrasounds like Danny who couldn't see brain matter during the scan or on the photos they gave us. Every radiologist should read this in my opinion https://plusweb.org/files/Events/Strategies%20for%20disclosing%20bad%20news%20-%20Dr.%20Woods.doc. Doctors go through so much training and yet have probably not been adequatly trained to deliver news. I am not angry, just hope that our radiologist doesn't make others who want to know results wait because they don't want to ruin their day. Well, those were my feelings about the ultrasound news. I will write more about these past couple of days and our emotions tomorrow. We are doing alright considering everything. Time for bed.

Saturday, December 13, 2008

Some bad news

Well, some of you know that I am pregnant.  Most don't since we were awaiting further testing due to Tylers condition.  I had a 20 week ultrasound yesterday which showed that the baby's brain tissue is severly underdeveloped.  If this child makes it to term, he will be unable to function on his own and die shortly thereafter.  While we are devastated and hurting, we are grateful at this time for our faith and a loving Heavenly Father who has a plan for this child and our family.  We know that the child will come to this earth to gain a body before returning to his Heavenly Father.  We also know that we will someday be reunited and have the opportunity to raise this child as our own. There are a lot of questions that still need to be answered.  We will keep you updated once we find out more about what is going on.  Please keep our family in your prayers.  

Sunday, December 7, 2008

Redwood Valley Railway
















Since Heidi was working all day in Pacifica, the boys and I went to do boy things. We took a few laps around Tilden Park on the miniature steam train. Scott was much more into this since he's familiar with Thomas the Train's comings and goings.

Wednesday, December 3, 2008

Thanksgiving In Utah

We decided very last minute to drive to Utah for Thanksgiving to surprise the McMillans. We left on Wednesday after Danny's last patient and made pretty good timing. Tyler couldn't come due to high altitude which was sad. Hopefully he will be able to come with us after his Fontan. Vacations just aren't the same without the entire fam. The Riv made it to Utah and back. What a feat. Danny did most of the driving on the way since it was raining, dark and I hadn't finessed my Riviera driving skills. I am proud to annouce I did much better on the way home and even drove through the Sierras.Scott liked to play in the boat. He pretended to drive and call all boats on the speaker. I am sure that one of our first big purchases after a house will be a boat.Me and my cute hubby.
Scott loved Gato.



We sadly have no pictures of the McMillan family feast. All of Danny's paternal aunts and uncles get together with their family for a huge feast. It was a lot of fun. I especially loved personally getting to know the so talented Aubrey McMillan and her two cute little boys. I only knew them through blogging which is where I stole this picture from. Scott and Aiden played all night long. I was glad he found a friend to play with. I also got to sit with a nurse from primary children's who has taken care of so many HLHS babies who I know from blogging. It was interesting sharing stories with her and hearing how primary's PICU runs. What a small world.

Playing on the trampoline with cousin Siena. What beautiful colors in the background.


Danny went fly fishing with his dad and a guy from the neighborhood. They all caught something. Way to go Boys. Glen with his first fish.


Danny's sister, Michelle, their cute baby girl Siena and Jared.


The newest addition to the Stevens family, Brigham. This is Danny's sister, Lisa, Adam and their two kids. We went to Cracker Barrel for dinner which was fun. I like that there is a whole room with toys to entertain the kids before dinner.


The salt flats on the way home. Scott tried the salt and didn't like it. It was cold.
I was so excited to see my little guy when we got home and he had no interest in coming to me but lit up and streched out for his daddy. Oh, so sad. Scott took this picture of the two of us the day before we left for Utah. I was impressed.
It was good to get away and see the McMillans. We haven't been anywhere since Tyler was born and needed a little vacation. I can't believe it is December.