I got out Silas’ molds that they made in the hospital and put a clear glaze over them. I couldn’t resist sharing this picture. It is amazing how tiny, yet perfectly formed his hands and feet were. Today marks a week since I last held him. I have both peace and sadness throughout each day. My mind says one thing, but my heart says another…
We got home from the hospital on Saturday afternoon. We spent the next day recovering and spending time with our family. The last few days have been a constant revolving door of us leaving and family coming in to babysit while we went to many appointments. So it was nice to have a full day with them. We also spent time discussing what we wanted for Silas’ funeral so we could be prepared for our Monday morning appointments with the funeral home and cemetery. The kids had lots of questions. Where is baby Ocho? When will we get to see him? Why do you put him in the ground? My older two boys have only been to one funeral when they were little, this was foreign to all of them. We had been open with them from the start about how sick Silas was. So I think they were somewhat comfortable with everything going on.
I woke up Monday morning to extreme pain in my head. I could hardly stand up. I knew this was a possibility due to some issues we had at the hospital with my epidural. I knew right away it was a spinal headache. When they did my epidural they went through the epidural space (a wet tap). Over a few days that hole allowed the spinal fluid to leak out around my brain. My brain was no longer floating, but being pulled down, which caused the extreme pain. I was so upset and crying. I thought “God, what more do I have to endure?” We went to our 9 am appointment at the funeral home with me walking hunched over. The only way to get relief is to bend all the way forward or lay completely flat so the brain was not being pulled down. I was praying that as soon as the appointment was over I could get in to do a procedure called a blood patch to help with the issue. I felt so silly walking into our appointment hunched over and with a look of complete agony. I briefly explained to the person we met with what was wrong, and that I was not losing it over the passing of our son. It is funny how time and time again we make a plan of how things will go only to be reminded that it is not in our hands. Thankfully, we had discussed ahead of time what we wanted. So it made the meeting short. Newcomer is a generous funeral home who will offer their services for free to parents who have lost a small child. They were very kind and easy to work with. The meeting was not as hard as I thought it would be, probably due to my medical distraction. Not a day goes by that we don’t shed tears several times a day, but the Lord always pulls us out of our despair to see the blessings He has given us.
I was able to get the blood patch done immediately after our appointment. I will save you all the boring details of what is involved. After four epidural punctures, birth, and a total of eighteen sticks for various reasons in three days, I did get relief instantly. Yes, I feel I am entitled to complain:) In order to make the procedure work I had to lay down and not lift for two days. Not an easy task for someone with a house full of kids and a home neglected over the past few days. We made it out just in time to make it to our appointment at the cemetery. God blessed us with a beautiful, secluded area for Silas among many trees. We left the cemetery with gratitude that God had provided everything we wanted for Silas and that I was no longer in pain.
During the next few days leading up to the funeral became very emotional for me. I think having to lie down so much left me with a lot of time to my thoughts. I was suppose to have a little boy at home nestled on my chest at wee hours of the morning, Olive was suppose to be a big sister to her future best friend, and Boyd was suppose to have countless hours teaching him about Jesus and instilling a passion for music. Just when I was starting to go into that dark tunnel that never ends I got on strongsilas and saw that Malaysia had been added to the countries on Silas’ journey. I have to constantly be reminded that God’s purpose for Silas’ life may not be what we had in mind, but it makes my heart turn from sadness to joy when I know maybe one more seed had been planted due to my little boys journey.
We had Silas’ service today. A very cold day, but the sun was shinning and there was no wind. Boyd carried his white little casket to the burial spot. We had a beautiful spray of white and ivory baby roses. Boyd had prepared a heartfelt message for Silas’ service. He told the story behind how we decided on the name Silas and the nickname Ocho. He read scripture of the life of Silas in the Bible and Psalm 18. Our pastor and his wife played acoustic guitar and led us in song. I am sure you know what song we sang-He is with us. He closed in prayer and told Silas we would see him again. I sat there crying over the missed opportunities with him, but I so look forward to spending my time with him in Paradise.
The pictures in his memorial folder were of an ultrasound profile picture, and of his little feet resting in his daddy’s hand.
A dear family friend offered to do a delicious, huge meal for our family after the ceremony. It was such a blessing not to play “host” for the day, but to enjoy time with family and friends. Throughout the week we have received such beautiful gifts for our Silas-flowers, meals, a bonsai tree, a needle point creation, and a donation in his name to the back2back missionary organization in Mexico that Silas visited while in the womb. Boyd and I have been truly touched by the thoughtfulness and generosity by our family and friends. We thank you so much. And most important thank you for all the prayers that have gone up to God for our whole family over the course of the last two months. Sorry if this post is poorly written, but I have a 16 mo. insisting on climbing all over me as I type.
Silas we love you dearly and you will always be a part of our daily lives. I know you are not here on earth anymore, but we will visit your grave frequently as a place to remember you. I want your siblings to grow up knowing you are their brother. My sweet Silas have fun running around up there with your new little heart!
The last few days have been a wave of emotions. The delivery of Silas was about what we expected, but with a few glitches along the way. The actual delivery of him was my longest. I was surprised because I had in my mind that since he was so premature it would go fast. I think it was more of a mental issue of holding back due to fear of seeing him be so little and not hearing his cry. We got to spend as much time as we wanted with Silas. It was such a precious time for Boyd and I. The doctor and nurses went way beyond their normal duties to make this process as comfortable as possible. We had excellent care. They had so many keepsakes of him made for me to take home. God gave me such a caring husband to go through this with. He is my everything-God is good!
I had mentioned this in a Facebook post, so it may have already been heard. Of course the day we went in for the induction was such a sad, surreal day. I had such a heaviness in my heart. So many things going through my mind. I had already been poked ten times that day and was just not ready to face what lied ahead. My nurse from my OB’s office came in to see us. I was surprised by her taking the time to come in. She talked for a bit telling us how sorry she was that we had to go through this. She then began to cry and tell us how much we had touched her life. That she saw how we handled this situation so different than she had seen before. That we handled it with grace. She said that we had taught her how to handle situations that may come up in life differently now. That we have encouraged her to be a better person. I was bawling as she spoke. We had named Silas after the missionary Silas in the Bible who traveled far to spread God’s word. Boyd and I had talked and dreamed that maybe one day as he got older that he may travel abroad and minister to others. What the nurse saw with us was the light of Jesus shining through us. Through Silas’ journey he ministered to others by our actions. At that moment I had shed my first tears of happiness since this all began. Silas had not passed away just because. He already started his missionary work. I felt such a heaviness lifted from my heart. I had such anger I didn’t even know I had of him being taken away too soon, but that had been released. The day was still extremely hard, but I knew I could go about the delivery and know that my Silas made a difference. Then tonight I got on the blog and saw that people from Canada, US, Italy, Brazil, and Germany have read this blog. I smiled and said there you go Silas you traveled abroad to many places spreading His faithfulness-God is Good!
Tomorrow we go to meet with people from the funeral home and cemetery to make all the arrangements. Something that I never thought we would be doing at such a young age, let alone for one of our children. It feels so weird. Kind of like I am watching a movie play out and it is not really me. We found a beautiful cemetery close to our home with trees. That was important to us since Silas’s name means of the woods-woody. We wanted something close so it was easy to visit when we wanted. We originally thought we would buy nine plots so we could all be together, but we quickly realized that would not work. As our other children become older and marry they will want to make their own choices. So Boyd and I decided we would be buried with him. We will have an intimate burial with just the immediate family this week. Something special that all of us could hold onto. Please pray for us during this time as I know it will be very hard to do and hard for our children to understand.
I read this saying that is a little cliche ish, but thought it was so true. You were budded on Earth to bloom in Heaven. God immediately gave Silas life when I conceived him, but he was not meant to grow here on Earth, but in Heaven.
Silas William Lee Gentry was born at 11:10 pm on Friday. He weighed 1lb. 5oz. and was 10 1/2in. Long. He is beautiful in so many ways. I am honored God chose us to be his parents. We love you Silas! We will look forward to the day we get to see you again in heaven my sweet angel.
I startled awake at 3:41 am on thursday. I immediately thought he is gone. I prayed for peace and for his journey to heaven. But I still had hope I was wrong. Later I used my Doppler and got the same 70-80s heartbeat. I realized he had not moved that day and that I was hearing my own heart. We went to the hospital where they confirmed our worst fear. Silas had passed that day. I will deliver our precious boy today. Lord please help us see You in this time.
It has been almost a week since we received the news on Silas. It feels like yesterday that we were sitting in that little room shocked at his diagnosis, but yet it feels like weeks. Once getting home we immediately were thrust into our parenting duties of our other seven children who were mostly still sick from the stomach flu. We had to try and explain what will be happening to Silas on several different age levels. Several doctor appointments had to be canceled and several new ones made. Each time having to retell what was going on. Boyd and I also had to do something that I never dreamed we would have to do- think about what we wanted to do when Silas passes away. Needless to say it has been a whirlwind. Each day filled with smiles of my children being silly or doing something ornery, sadness at the reality of what is going on, and frustration and some anger as to the big “why?”, and the paranoia of can I still feel him moving. The day we got back Silas’ baby blanket that I had someone make had arrived along with a few outfits I had bought for his hospital stay. It took me several days to open them. When I did all the emotions came flooding out. I was completely broken at that point. But as on so many occasions my God wrapped me with His merciful arms and gave me strength to walk out my bedroom and face the rest of the day.
We go Friday for my amnio at which point we will have another ultrasound done and will see how much the hydrops and the heart failure has progressed. We had declined the amnio early on due to the risk of miscarriage, but now we think it is the best decision to see if any of his conditions were caused by genetic or chromosomal issues. This information could be helpful for when our own children start families. We also bought a fetal doppler to keep track of his heartbeat. We thought it would help alleviate all the guessing if I had felt him move that day. His heart rate has slowed considerably. It stays around 70-80s. Each step in this journey still hits hard even though we know he is very sick. Just hard to accept.
Many friends and family have been such a huge support in prayer and just listening. Our church body has also been faithful with prayer and providing meals this week. It has been such a huge blessing to have one less thing to think about and prepare.
I know some will question or wonder how I can put such a personal situation out there for everyone to see. We even at times have typed something up and deleted it because we thought “This is too personal, I don’t want the attention from it all right now.” But I want to be an example to people that we can be faced with the most horrific situations in life and have all those normal responses-anger, sadness, wanting to run, to question, and just quit-but that does not mean our God has left us or forgot about us. I posted this song on FB and I think it tells it well.
He Is With Us-Love & The Outcome
Remember when your hope is lost and faith is shaken
Remember when you wonder if you’re gonna make it
There’s a hand stretched out through your deepest doubt
We can’t pretend to see the ending or what’s coming up ahead
To know the story of tomorrow
But we can stay close to the One who knows
We can trust our God
He knows what He’s doing
Though it might hurt now
We won’t be ruined
It might seem there’s an ocean in between
But He’s holding on to you and me
And He’s never gonna leave, no
He is with us, He is with us
Always, always
He is with us, He is with us
Always
We believe there is purpose, there is meaning in everything
We surrender to His leading
He wants nothing more than to have us close
We can trust our God
He knows what He’s doing
Though it might hurt now
We won’t be ruined
It might seem there’s an ocean in between
But He’s holding on to you and me
And He’s never gonna leave, no
He is with us, He is with us
Always, always
He is with us, He is with us
Always
Our faith is sealed
Our hope is real
Come what may
We’re not afraid
Our faith is sealed
Our hope is real
Come what may
We’re not afraid
We’re not afraid
We can trust our God
Always, always
We can trust our God
Always, always
We can trust our God
He knows what He’s doing
Though it might hurt now
We won’t be ruined
It might seem there’s an ocean in between
But He’s holding on to you and me
And He’s never gonna leave, no
He is with us, He is with us
Always, always
He is with us, He is with us
Always, always
He is with us, He is with us
Always, always
He is with us, He is with us
Always
Our God is with us
Read more: Love & The Outcome – He Is With Us Lyrics | MetroLyrics
We still pray and have not given up hope that God can perform a miracle in our little boys life. My faith in God has not wavered.
We went to CHOP expecting to receive news on how hard the road would be to get Silas in a good position once he was born, but never thought we would be told our little boy would not even make it to birth.
If that day was not going to be hard enough I woke up with the stomach flu. Not ideal for hours of pressing on your stomach to get pictures of his condition, but I was determined to get the best advice for him. We had to be at the hospital at 7:30am and did not leave until 5:00pm. I had a two hour echo, two hour ultrasound, and a fetal MRI. In between those tests we met with a genetic counselor. At the end of the day is when we were able to talk to the physicians about their findings. Though out each test I could pick up on other conditions happening within his body, but was unsure of what it all meant put together. By the end of the day I was pretty sick and exhausted, but was anxiously awaiting to hear what the plan was for him. The news was devastating. We were told that Silas had an extreme case of HLHS, which we had know, but that he also had another defect of his pulmonary valve. Dr. Rychik explained they had only seen a few cases like his. With those two defects combined he was going into heart failure. Due to the heart failure he was not able to handle the fluid building up. This has caused a condition known as Hydrops. It is where they find fluid build up in at least two areas of his body. Silas has extreme fluid in his stomach, bilateral pleural effusion, and in the brain. He will pass away before he is born at which time I will be induced and deliver a little boy. Or I will develop a condition called Mirror Syndrome where my body mirrors what is going on with him and can be life threatening for me. We both will be monitored closely until either of those happen. I will also get an amnio soon so we can see if this was caused by a chromosomal or genetic disorder we missed in the bloodworm. Information to help with future babies or when our children start their own families. I do not like to cry in public, but how could I not break down completely with this news. We knew our lives would completely change when we had him due to his HLHS, but we were just happy to have a chance to fight for him, to live a life with him no matter his condition. Now we feel robbed of that. I could not wait to get back to our hotel room and just let ourselves mourn our son. It was the worst night. Still is. The waiting is awful. To still feel him kick just reminds me of what I won’t have. I will not just simply except that he will die just because. I believe God gave us Silas for a reason and will take him home early for a reason. If I don’t believe that my sadness will turn to bitterness. I truly trust God and his plan, but it still feels cruel. We may not see His plan for a long time as to why. I know my Heavenly Father does not do things to His children to be mean. He is still good. He will guide us through this time.
He will always be our Strong Silas!
God has greatly blessed our family this past year. He has provided our every need and much more. I am so thankful to have a relationship with Him, and to see our children grow in maturity with their walk with the Lord.
2016 will be a year we will rely on Him with every aspect of our lives. To learn to truly give everything over to Him. To watch Him perform great works and to provide us with patience, love, and comfort for the things out of our control.
2016 will be a year of Silas. I am very anxious to meet our little guy. I can tell he is growing so strong as his movements are getting more pronounced and take me by surprise at times. It is still a roller coaster of emotions. One minute I could be totally fine. Then one of my children will do or say something that makes me think “Will Silas be able to do that? Will he be here to enjoy…?” The tears then start. I am then reminded that we are not alone. He will walk through this with us.
Next week will be a very crucial time as we will finally be meeting with specialists at Childrens Hospital of Philadelphia. I will undergo a day of testing and meetings with specialists. That day will give us a direction as to how bad or good his condition is, and where we may be living during his birth and treatment. We pray for guidance on all the decisions we will be faced with; to make decisions based on prayer and not out of fear.
December 14, 2015 (16 weeks and 4 days pregnant)
The days leading up to our second appointment with the maternal fetal medicine group were filled with anxiousness and prayers that Silas’ heart had changed/grown. Since Silas was diagnosed at such a young age (13 weeks gestation) we were told it was too early to get a clear or complete picture of his heart. I was ready for some answers at this point. This is where my impatient personality comes out. It had been three weeks of guessing the extent of the problem. Also, we wanted to see if the Lord had decided to heal Silas.
Once again, I was beyond excited to see that his little heart was still beating, and that yes, Silas was definitely a boy:) All his body measurements were normal. Silas was actually measuring a week ahead in some aspects. In seven prior pregnancies my children never measured ahead of schedule.
Babies with HLHS often have IUGR-Intrauterine growth restriction. This can have a negative effect on any baby, but especially a baby with HLHS. These babies need to be a certain weight to move along with their heart surgeries.
With low levels of HCG, I was concerned about Silas’ growth. We saw first hand that God was still watching over our baby. When it came to scanning the heart I could see it did not look normal. So we sat nervously waiting for the doctor to return to go over the results. God had still not healed Silas’ heart. His left atrium and ventricle was mostly non-existent. The doctor thought he could see the aorta, but it was very stenotic(narrow).
A new diagnosis was that the atrial septum was intact. This brings a new set of issues with Silas’ care before and after delivery. I am still trying to understand this issue. With an intact septum blood cannot flow to the left side of the heart, and that causes pulmonary pressure to build which can damage the pulmonary system. Fetal intervention can be done in some circumstances to correct this.
Fetal intervention includes having a catheter inserted into the baby’s septum while the baby is still in the womb. Doing this while in utero may prevent damage to the baby’s pulmonary system. This surgery is only performed at a select few hospitals in the nation. If fetal intervention is not an option, then delivery can take place in a catheterization lab, and the baby is immediately catheterized. For babies born with the atrial septum intact, pulmonary blood flow increases substantially once the umbilical cord is cut. That causes extreme pulmonary pressure.
Silas’ pulmonary artery is already significantly dilated. The doctor also told us that he saw significant regurgitation across the tricuspid valve. Basically, an important part of the right side of his heart is not working well. HLHS babies bank on that right side to be strong enough to do all the work that the left side is incapable of doing. At the time of the appointment I did not know what that diagnosis really meant, so I had no questions. Now that I have read about it I have a ton.
Regurgitation across the tricuspid valve can be repaired if it is minor, or if it is significant, it could mean Silas will need a heart transplant. Once again we left the office in silence, and when I got in the car the news sank in. My baby boy is actually very ill, and unless God chooses to heal him we are in a battle for his life. I broke down in tears at the thought of my Silas having to suffer and fight so much for life. This blog is from my point of view and I tend to leave out Boyd’s feelings. I think this appointment made this whole situation very much a reality to both of us. For us it is hard to move forward with all the planning that is involved without feeling like we do not have faith in God to heal. At this appointment we realized it was time to move on with the process, and start the ball rolling with visiting a few hospitals to get opinions and to see and pray which one was a good fit for Silas. We will relocate our family to live near the hospital we choose until he is able to come home (2 months to a year). So, lots of decisions and planning to come.
We wanted to get an opinion from one of the top hospitals recognized at treating severe cases of HLHS – Children’s Hospital of Philadelphia (CHOP). I had to, for my own peace of mind, to get an opinion from one of the best. We will also get an opinion from the nearest hospital that treats HLHS-Cincinnati Children’s Hospital, which happens to be rated at #7 for their pediatric heart center.
We leave January 7th for Philadelphia. On the 8th we will have an 8-10 hour day of testing and meetings with specialists to discuss Silas’ heart. I am hoping to get more answers, but I am also very scared at what they will find. We have received such overwhelming news from just ultrasounds, what are they going to find with extensive echocardiograms and fetal MRI’s? I am reminded of the song:
“Strong Tower”
I go running to your mountain
Where your mercy sets me free
[chorus]
You are my strong tower
Shelter over me
Beautiful and mighty
Everlasting King
You are my strong tower
Fortress when I’m weak
Your name is true and holy
And Your face is all I seek
In the middle of my darkness
In the midst of all my fear
You’re my refuge and my hope
When the storm of life is raging
And the thunder’s all I hear
You speak softly to my soul
Meeting with genetic counselor December 1, 2015
We knew the blood work would come back with high percentages for chromosomal defects. So we were kind of prepared, or so we thought. I had a 1 in <5 chance for Trisomy 18 or 13 and a 1 in 18 chance for Down Syndrome. It was hard to see it on paper. I really had my mind made up we were just dealing with a heart defect. Now I was beginning to have doubts. My results also showed my HCG level to be extremely low. I then took on the stress of thinking I could miscarry and Silas would not even have a chance at life outside the womb. All I could do was put our trust in God and continue to follow the path He had for us. I found comfort in knowing that it was out of my hands, but in His. I had no control over this.
I then took the maternity 21 blood test that is 94-99% accurate with results in many chromosomal syndromes including Down Syndrome and Trisomy. We would also be able to find out the gender of our baby. During our last four pregnancies, we were adamant about not finding out the gender. Once again I think God was preparing me to not have another disappointment. Before we knew Silas had anything wrong we decided to find out the gender – just for fun. It kind of took me by surprise that both Boyd and I felt like we wanted to know the gender. So another long week of waiting for the results of a blood test. I am learning that this whole process is about waiting and patience; two things beyond my comfort. When I have a problem, I tackle it head on and get it fixed right away.
That week I anxiously awaited the call with the results. I tried not to worry and hand my cares over to God, but it was hard! It is still hard to escape the never-ending thoughts as I feel him move, and I watch my stomach growing. I feel so responsible for his well-being. On December 9th we got the call. It’s a boy!!!! (Our last three have been girls, so it will be a nice change to have a little boy running around.) Most importantly the chromosome tests were normal. I never thought I would feel relieved to “just” be dealing with a complex heart defect.
At this point Boyd and I never really let ourselves think to far into the future of planning Silas’ care. We are praying still for a miracle and are waiting for that next ultrasound. We believe that God can grow our little boy’s heart. We had total faith that He could do it IF He chose to do it. Often when people would ask how we were doing, I would feel guilty that I was portraying that we had given up and accepted his diagnosis. So not true. Boyd said “We are human, he is our child, and this is happening right now. It has nothing to do with our lack of faith. We are parents to a child who is sick.” If God chooses not to heal Silas, then we are Ok with that. Of course, it makes us sad, angry, and so many other emotions, but not at God. I do not question why this is happening. I know there is a reason as to why this is happening, but we may not know that reason for a long time.
strongsilas 