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.
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12 comments:
Heidi,
Thank you for sharing these very honest and sweet thoughts with us. I know that this is an intensely personal journey and your feelings are expressed so beautifully. I do now know you personally and yet in the short time since our baby's diagnosis, you and Danny have become great examples to me. Thank you and may you continue to feel peace.
Alli
Heidi,
Thanks so much for sharing your raw emotions and feelings through this entry. As the answers of why are sometimes never answered, I truly believe that your purpose in life will be to help others. Your wisdom, words, encouragement, compassion and faith will be able to heal so many. You are already such an inspiration to so many others (me included).
I look at life so differently now since Tyler arrived. I count my blessings daily, cherish my life and health and constantly remind myself that nothing is too hard to accomplish without God's help. I thank you for restoring my faith that was somewhat lost for a few years. It is the greatest gift of all.
I love you so much. Please know that I'm always here to support you and available to listen to both you and Danny.
All my love,
Heather
Heidi, you are so beautifully honest, and I appreciate it. I pray so fervently for you, Danny, Scott, and Tyler. I wish we could come out for the burial. It sounds like you found the perfect resting place for Carl's body. I hope that you will continue to heal and be strengthened during this time. Wouldn't it be nice if we could catch a glimpse of eternity to know what really is going to happen? I guess we need to have faith, but I always wish I could see more than I do! I love you guys!
Heidi and Danny,
With tears rolling down my cheeks and you and your family in my heart and prayers, I send you my love and many hugs. What you are going through is such a deeply personal experience and your strength and faith together is everything. Diff and I can relate at some level to your loss and know that we needed each other so much and we learned to appreciate the love and support of others but realized only we could completely understand our loss and what we were feeling. You and your family will continue to be in my prayers and I hope there is a time when I'll see you and be able to give you a hug in person. love, Marcie
Heidi and Danny, you guys are such great examples of strength and courage. We bid farewell to Carl and know that he is in a better place. The Lord knows what best for us, and that is the most wonderful thing.
Heidi,
Your story told in your own words is a blessing to me. I cried as I read it, grateful for your testimony borne throughout. What really stands out to me is that you said, "I wouldn't change it." That statement marks a person who is well on the way to recovery. I feel so much love for you and Danny. Please know our prayers are with you.
Love,
Jen & Tim Jacobson
Thank you guys for sharing so much and trusting us with your feelings and so much detail in this time of your life. I know I don't know you guys super well, but have always been impressed with the spiritual side of your lives. Your expression of faith and eternal understanding of this experience reminded of of how I feel when I hear about the Christmas story when it's read aloud from the bible. An experience I wasn't there for, but the words confirm there is a bigger plan and so much more about life on earth and on the other side of the veil. I admire you both and the faith you have extended and strengthened in this time.
I wish for continued comfort and peace for your family.
Danny And Heidi,
I hope you feel continued peace. We are sending sweet thoughts to you.
Heidi,
I've always admired your strong testimony. Your unwavering faith is so inspiring. Your boys are so blessed to have you as a mother. My thoughts and prayers are with you.
Love,
Jacki
Heidi, I read this entry a couple days ago, and have been thinking about you and your family ever since. I can't imagine what you are going through. I think you are so strong, and an amazing example. My thoughts are with you and your family.
I wish I could have been there for you in your time of loss. I cannot understand the kind of pain you all are experencing, only imagine the extreme greif and loss of this magnitude. You are in incredible family and Carl Lavar was indeed a blessing and sign of hope for all.
ann
Heidi and Danny, our thoughts and prayers are with you. Thank you for sharing this most special and personal experience. -Steve and Leah
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