Monday, October 27, 2008

Diagnosis

Many of you have left comments or have e-mailed me asking what, exactly, was Isaac's diagnosis. In an effort to answer your question, I thought I would give a "reader's digest" version of our story.

Our story actually begins on Labor Day of 2007, when I found out I was pregnant with our first child. Having conceived very easily, I was blissfully optimisitic that clearly, on or about May 9 of 2008, we would welcome our first little one to the world. Of course, we called our parents right away, marked the baby's due date on the calendar, and started thinking all about the "next times..." the next time we go to the beach we'd have a little one with us... and so forth. My first few prenatal appointments went well, and I remember both hearing and seeing our baby's heartbeat for the first time. I also remember asking my doctor what the risk of miscarriage was once we had heard the heartbeat, and he told me that it was extremely low... less than 1%.

So I was surprised one Friday afternoon when the kind ultrasound tech called and wanted me to come back in to double check a few things that didn't look quite right on a previous ultrasound a few weeks earlier. She said it was more of a peace of mind thing than an actual concern. Nonetheless, I was terrified. Spencer met me there, and we were blindsighted by the news we received: your baby's heart has stopped beating. That was November 2, 2007. At 13 weeks, my child was no longer with us. We later found out that this baby had triploidy... a whole extra set of chromosomes. The concern that was seen on the ultrasound photos? An omphalocele... and if you remember anything about Isaac, this should sound familiar. However, we were told that the omphalocele was simply a marker of this baby's genetic abnormality.

We waited the couple of months my doctor recommended and then, again, got pregnant easily. I remember taking a pregnany test "just for kicks," thinking that this wasn't our month at all... I was wrong. So on February 26, 2008, we learned that we were expecting Isaac. Again, I was excited, but much more guarded. I remember calling and telling our parents, but we decided to wait much longer before telling other people. I did share the news with one close friend, mostly because I was just really scared and really nervous, and needed a girlfriend in which to confide and with whom to pray.

The first few weeks went off without a hitch. I felt a little more nauseous this time, which was very welcomed because it was a marked difference from my first pregnancy in which I didn't feel nauseous (or really anything) at all. We saw and heard Isaac's heartbeat, and everything seemed to be going well.

In late April, I went away to New York with my mom and sister for the weekend, and the whole time just felt like something was"off." I don't know how to explain it really... but I just noticed this weird drop in any pregnancy symptoms. I was about 12 weeks at this point, and thought it could have simply been my symptoms tapering; but because of my previous experience, I wanted to be sure.

So, I called the doctor and on April 21, went in for a heartbeat check. Spencer met me there, just as I was being called back. The nurse couldn't find Isaac's heartbeat on the doppler, so they very quickly sent me for an ultrasound. I remember asking the tech if there was a heartbeat and she said yes, but she seemed very concerned and preoccupied with other things she had found. She asked if we had had our first trimester screen yet, and I explained that we hadn't, and hadn't really planned on having one. I then asked her if she noticed anything that was cause for concern and she said, "Oh, yes..." and turned the screen for us to see. Now I am not one who can usually make out what is on the ultrasound screen, especially early in pregnancy; but there was no mistaking the large cystic hygroma she pointed out around Isaac's head and neck (measuring to the tune of almost 9mm), or the omphalocele by his abdomen. We met briefly with my doctor, who immediately referred us to a genetic counselor.

As we sat and talked with the genetic counselor, my head was spinning... we were hearing things like "5-10% chance of viability" and "even then we wouldn't know about this baby's quality of life..." She took our family history, we talked about what these markers could be pointing to, and she recommended that we have a CVS test done to check Isaac's chromosomes. So we did. And it hurt like crazy.

A few days later, we received the preliminary results that Isaac didn't have Trisomy 13, 18 or 21, and the more thorough results we received about a week later indicated that all of Isaac's chromosomes were normal, and that we were having a little boy. We were so excited... excited that there wasn't anything genetically wrong with our baby, and excited that it was a boy.

We had additional visits with my doctor, and then had our first fetal echocardiogram. Since I was only 17 weeks, it was difficult for the cardiologist to see very much, so she recommended that I go for another one in a few weeks.

During this time, we prayed and prayed... we had learned that Isaac's cystic hygroma had shrunk and praised God for it; we continued to pray that Isaac's heart, brain, lungs, limbs, and everything else would be developing normally. At this point, I truly felt like Isaac was going to be okay in the long run... that he may require some surgeries shortly after birth to correct the omphalocele and that it might be a long road, but I really thought this would all be fixable.

In late June, at 20 weeks pregnant, we went to Children's National Medical Center for our "marathon" day of tests, including a fetal MRI, another fetal echocardiogram, and an in-depth ultrasound. This is the day our lives were changed, our mindset was thwarted, and we learned that things were not at all as good as we were hoping they'd be.

The good news was that Isaac's heart and brain looked normal, as did his limbs. But the rest of the news we received was devastating... the omphalocele contained all of his intestines, his liver, and several other organs. In addition, his spine was severely curved (termed "kyphoscoliosis"). consequently, his chest cavity was extremely small, and he wasn't developing the amount of lung tissue that he should (termed "pulmonary hypoplasia" or "hypoplastic lungs"). We met with several doctors, including a pediatric surgeon, who essentially told us there was really nothing they could do for Isaac. With his chest being so small, there wasn't even really room for lungs to develop, and with his spine being so curved, there really wasn't a way to repair the omphalocele. That day, we were essentially told that our son was going to die... perhaps in utero, perhaps at birth or shortly thereafter.

Many of the dotors with whom we met encouraged terminating the pregnancy; that was never an option for us. Isaac is our child and he deserves a chance at life, just as anyone else. We also know that God is a God of miracles, and that He is bigger than medicine and could change all of this if it was His will.

And so as we continued the long road of many doctors appointments and ultrasounds, we prayed... prayed for Isaac to be healed, prayed for the chance to enjoy seeing Isaac on the ultrasound monitor, prayed that Isaac would be born alive... but over and over again, prayed for a miracle.

During those months of appointments, we learned of other smaller complications, like how the omphalocele was adherent to the placenta and therefore Isaac was sort of "stuck" in a transverse position; we also learned that because Isaac wasn't able to move around freely, the umbilical cord never really had a reason to grow very long, and only measured around 7cm.

At about 33 weeks, I ended up in the hospital having contractions, and thankfully the doctor was able to get them to subside with a few shots of terbutaline. I remained on an oral form of the terbutaline for the duration of my pregnancy. Because of this little scare, my doctor decided to move up my c-secion date by 10 days... this was also devastating to me. I knew that Isaac was safe inside me, and truthfully I didn't want to have to give up 10 days with my son. But, I also recognized the importance of my c-section being carefully planned with all of the right people there, and so an emergency c-section situation wouldn't have been good for anyone .

On October 7, our beautiful sweet Isaac was born at 8:33 am and was alive and with us until 8:49 am when he went to be with Jesus. He was so peaceful the entire time... never struglled or appeared to be in pain, and we are so, so grateful for that. We were so fortunate to have family and close friends there to meet him, to have a wonderful nurse who helped us make lots of memories with him, and a talented photographer who took hundreds of pictures. We got to hold and just love Isaac for as long as we wanted. Saying goodbye to him that night was the hardest thing I have ever had to do; but I wouldn't trade anything for the chance to have gotten to meet my son, and to love him for his entire life... snuggling with him, telling him how proud I am of him, how much we wanted him, and how much we love him.

And so the diagnosis? "A sequence of giant omphalocele, kyphoscoliosis, and hypoplastic lungs, severe." Essentially, the neonatologist's assessment is that the omphalocele was so large that as Isaac's spine grew, it sort of had to grow around the omphalocele (which was sort of pulling him forward). She called it a "deformation" of the spine rather than a "malformation." These two issues, in turn, caused his chest circumference to be so small that he wasn't able to develop enough lung tissue to breathe on his own. We have been told that this was an extremely unfortunate random thing that occurs at 4-6 weeks gestation, that it is not genetic, and that there's no reason to believe it will happen again. I sort of can't get past the fact that an omphalocele was present with both my first pregnancy and with Isaac, and this is definitely something I want to bring up with both my doctor and the genetic counselor.

So in the end, we're left with having found the narrowest odds, and to be honest, that sometimes makes me really angry. I don't like the fact that my child was the 1 in 10,000 (the occurance of a giant omphalocele) and that the other complications made it so that surgery wasn't an option.

I guess the bottom line, though, is just that I miss my son terribly. I had thought that having so much foreknowledge would have better prepared me for this; but the truth of the matter is that it didn't. It allowed us to be prepared on October 7, but nothing can prepare you for the depth of the heartache of losing a child.

I don't really know anything different to ask you to pray for today... it's all the same, really... For peace, for comfort, for God to be near to us (when truthfully I feel really abandoned, even though I know I haven't been). Please also pray for us as Spencer as he goes back to work tomorrow... this is hard both for him to be getting back into the grind, and for me, as I am pretty resistant to wanting anything to go back to "normal." Please also pray that God would begin to restore our joy and our hope in the midst of our brokeness.

64 comments:

Jill said...

Stacy,

Oh my heart aches for you and Spencer!

I will continue to pray for you both. I just wrote about entering His rest. It is where He wants us to be - not outside of it. He is there in the pain and this trial and desires to draw you close. Draw near to Him and He will be found. He loves you so much and has not given up on you. Don't give up on the deep truth you know about Him! Grieve, cry, shout, and all the other natural emotions you are feeling and bring them right to His feet - where He may be found - He will carry them. Let your belief and faith be the rock in which holds you up - let the grief roll by and watch God use it to lift up your feeble knees!

Many prayers being lifted up for you today and this week! Hugs and love from a sister in Christ - one who wants to carry a little piece of your pain - Jill

Danielle Kinnamont said...

Know that I continue to pray for you daily. May God continue to give you strength.

Abbie said...

Your strength is amazing. It is so wonderful that you gave him a chance at life and did not terminate him like the doctors were encouraging. It is hard to go against what someone of "authority" in the matter is telling you to do. Ultimately God has the higher authority. I am continuing to pray for you and your husband.

Alison said...

Stacy,

I am still praying for you guys. I can't imagine the range of emotions you feel right now, and I just pray that the Peace of God would reign in your spirit above all the rest of them.

((HUGS))

grandmaof6 said...

Praying for peace and strength for you daily.

Kim said...

I check your blog daily and my heart aches. I can not pretend to know what you are going through but I will pray you and Spencer find some comfort and rest as you move forward. You really are an inspiration to many and to share your story and your faith with your readers as you do touches more people than you will ever know.

nowamomoffour said...
This comment has been removed by the author.
nowamomoffour said...

Stacy,
You are an amazing woman whom I have never met. With that being said, I pray for you everyday as I start my morning. You and your husband and your beautiful son have tremendously impacted my life. I am so sorry for the tragedy that you must journey through and I know you would rather have your son back than to effect the lives of the people reading this blog. I thank you from my heart for allowing yourself to be vulnerable before us. I pray that the GOD of PEACE bring you a peace that you can't even fathom. I pray HE wraps His arms around you and holds you close until you can feel some strength in your heart. I pray that He sustains you and brings joy back into your life and into Spencer's life. Isaac is a such a precious life that has had more impact on this world than I will probably ever even dream and you are his mother. What a blessing you have given to this world. Thank you so much for your impact!!!! We are PRAYING FOR YOU DAILY!!!!!

Anonymous said...

I know it seems endless at times, but you WILL get through this. The pain will never go away, but it will become easier. From reading your blog, your are an extremely strong person, a hero indeed. Just take is day by day, minute by minute, second by second. Isaac was so lucky to have two parents that truly had his best interests at heart. I pray you find yourselves falling into a normal routine and that your heartache begins to heal. You both are wonderful parents, and will be again someday.

Beckycain6 said...

Hi Stacy,

I am so sad to read that. It makes it a tiny bit easier for my mind to understand.....because Isaac just looks so beautiful and perfect. When I saw his first pictures...I could not understand how such a handsome little man could be gone. But, with the things he had going on on the inside......I don't know, saying it "makes sense" that life outside you would be difficult sounds hard, and wrong and so insensitive. Isaac is precious and beautiful. That alone makes it impossible to think that he is gone from you and Spencer.

I'll share with you that you have not been abandoned. It is a concept that is so hard to see with clarity when you are in the midst of a terrible storm.......but He is with you. I promise you that. Try not to be afraid or lean "unto your own understanding." You can ask why and shout to the Lord that you are angry, frightened and very upset. He can deal with that. He understands. I promise you.

I am praying for you. I truly am. I pray that God will give you and Spencer peace and assurance.

Kindly,
Becky

Anonymous said...

There is nothing that anyone can say that will help. I will continue to pray for comfort and peace and one day, hapiness. My heart breaks for you. You are a hero and someone that I would be proud to call a friend. You have a grace and strength that is truly amazing.

Cynthia

Mrs. P said...

I have been following your story, and you have touched me deeply. I just wanted to say that you have internet "friends" that are praying for you all over the world!

Praying.

Elizabeth said...

Thank you so much for sharing that story. I, myself, had wondered as well. I hope you already know from your family and from these posts how strong you are. But sometimes in times like these, it can be tiring to hear and read that when it's the last thing that you feel. Every emotion you are feeling right now is real. Anger, frustration, abandonment, hope, trust. Please allow yourself to feel these things and not feel bad about it. This is a tough time, and I can't pretend to even understand one ounce of it. I will say that I'm glued to your blog daily. Not only do I care about your walk through this time, but you are an inspiration, whether you feel like you are one or not. My heart continues to break for you.

Sincerely,
Elizabeth

Devon Rene said...

i know what that quest for answers is like and i know its incredibly overwhelming and frustrating...

just know you are in my thoughts and prayers. my heart hurts for you and with you. may you know you are not alone.

~d

Jen said...

Stacy,
I'd like to send you the Angel Mommy blog award. Please go to this link to pick it up.

http://sweetbabywhispers.blogspot.com/2008/10/angel-mommy-blog-award.html

Much love.

Monica @ Writer Chic said...

As one who is back to work today, surrounded by "normal" that I hate, I will cry and strugle with you today. My biggest hugs to you, Stacy, and the continued wish that we were physically closer. We'll get that coffee in April, I promise.

Anonymous said...

Stacy,
I do not know you personally I have learned of your story through a friend and followed it about a week before Issac was due.

Your story is sad to my heart but I really consider you a hero! Loosing 1 baby early one is rough but than finding that will power to try again and than learning of his conditions and yet still carrying this little miracle is just amazing. I am a mother of 3 and I am due Jan 09 and I in no way am as strong as you. I could never do what you have done. Your story just amazes me and my husband. I wish I could hug you and say everything will be alright but I can not but I think of you everyday and your husband and think how amazing you both are.

God wanted your son for his garden and now we have a new little angel that is watching over you and your family and is loved by all in heaven and one day you will walk with him and God. I hope that you can find inner peace and just love each and everyday. May god wrap his arms around you and your husband. Your strength is just amazing!

I hope that one day you are able to bring a baby into this world. You are more than deserving to be given that chance. May God be with you everyday and I want to Thank you for giving me hope and strength! You are a strong women!

boltefamily said...

I am praying for Stacy. I know sometimes it is hard to pray for yourself. It almost seems like a futile effort. There have been so many times I have had to rely on the prayers of others because I have been too weary to pray for myself.

I will pray extra with your husband going back to work. That is such a hard thing. You feel like everything in your world has changed yet the world goes on as usual. Many of us have been touched by sweet Isaac and will never be the same because of him.

You are loved and covered in prayer sweet friend!

Love,
Kristy

Anonymous said...

Dear Stacy,
You don't know me but we will someday meet in heaven :) I have a deep respect for you and Spencer and pray that God will continue to give you His grace & strength. I ache for you and pray for you. Let yourself grieve and sorrow, underneath are those everlasting arms - even if it feels like you are under - very far under. "There is no hole so deep that He is not deeper still" (Corrie Ten Boom said that).
Love in Christ, Marianne

Kirsten said...

Sweet Stacy,

Jill said it all. We are praying for you, remembering Issac and lifting up you and Spencer each day. I know the mixture of feelings surround you - and sometimes seem to suffocate. You are not alone. God is with you. He is the same today, yesterday and forever. He has gotten you this far, and He will take you through the journey. Until you are in Heaven with Jesus and Issac. A place where there is no more pain and loss. It will be a glorious day.

In the meantime, keep sharing your story, heart and feelings. Lean on Christ and His people who want to support, love and share strength with you. You are not alone. The feelings of loneliness for Issac are so real. You are not alone though.

Praying for peace, comfort, joy and protection.

I may have shared this with you before - the first few weeks after Chloe passed were dark and sometimes too quiet. Someone encouraged me to have praise music on throughout the day and it did wonders for lifting my spirit. My mind didn't stay in the dark places for long when I had praise music on - it was a source of protection, comfort and peace in the storm. It provided me strength when I felt I had none left. I pray that it will be blessing to you as well.

Hugs and love to you and Spencer,

Stephanie said...

I am heartbroken for you. Every word was beautifully written. I love how you have honored and upheld every single day of Isaac's life. I know what it is like to question like the disciples in the boat questioned when the storm came...
"don't you care if we drown?"
He does care and He can still the storm, bring peace and cause the waves to be completely calm in a ravaging storm.
I am just so sorry.
Your life, Spencers and Isaac's have been such a beacon... shining bright. I am just so, so sorry for your unimaginable pain.
Praying-

Anonymous said...

Stacy, I know first hand the pain you are experiencing. My prayers are with you. Please never deny yourself the emotions you are feeling, if you want to cry, cry. If you need to write, write. If you need prayer, ask. God is carrying you closer than you will ever know. Our children are safe with our Lord. Thinking of you today.
Love,

Lauren Feenstra mom to "O" angel Luke

Megs said...

Hi Stacy- I found your website through a friend. I am very moved by your words- may God give you peace, and may He continue to watch over you during this time. I completely understand your frustration about hearing that what Isaac had is so "rare". Our two year old was diagnosed with kidney cancer in July. Only 500 children each year our diagnosed with Wilms tumor. All the literature states "Childhood cancer is rare...".... not really what you want to hear when you child is the one affected.
Isaac is beautiful. He is blessed to have you as his mom.

Jessica said...

I know also had a child that was born with several complications that caused his passing. They too devoloped in that 4-6 weeks time span. It was not anything genetic(after testing all the chromosones came back completely normal).While my child's were different than Issac's, the did cause underdevoloped lungs which was the main complication after birth. (Treyson's problems were no kidneys, shortened curved spine, possible brain problems, and small size for gestational age)We have the same odds as they gave you about Issac,(1 in about 10,000). It is hard that there is such a small chance statistically of something like this happening, yet it happened to me. I know how it feels to deal with that. But at the same time, I have chosen to view it as God especially chose me to carry such a precious special child. It is difficult to stay positive at times, but even with things turning out the way that they did I wouldn't trade being Treyson's mother for anything.

God especially picked you to be Issac's mother. Of all the women in the world he allowed you to carry this child who has been such a precious gift to not just you, but the world.

Erika said...

Stacy,

I am praying for you and for Spencer.

I lost my identical twin daughters on July 12, 2008- the grief of losing them is all-consuming, and not a moment goes by that I don't think about my baby girls, wonder why this happened to our family, and what sense can be made out of all this tragedy.

You are not alone. I know your grief for Isaac is intense and unrelenting. I've been there (am currently there), and it's the most difficult journey I've ever walked. Isaac will always be your son, and some day you will see him again. That single thought is what keeps me getting out of bed in the morning- knowing that one day I will again see my girls.

Love,
Erika

Bethany said...

Stacy,

I have read your story. My heart breaks for you as you face what no parent should have to face.

I lost a baby boy in August of 2007 and I know from experience that the pain never goes away, but it does begin to hurt less. You will have brighter days...you will laugh.

You will remain in my thoughts and prayers.

Bethany

Teresa said...

I've never cried so much an so hard for someone that I've never met. My heart continues to break for you every day. I will continue to pray for you, always!

Hope Wilson said...

Thank you for allowing us to be a part of your journey & for your transparency. May God give you & Spencer the peace, comfort & joy that you long to have.

Kelly said...

Stacy,

You are continually in my prayers. I remember when my husband went back to work after we lost our twin daughters...I felt the same. For me, it helped to have a close friend or my mom around.They stayed with me...answered my phone, went to the store, helped me function. It depends on what is best for you. Sometimes being alone helps some...it depends on the individual. It took me a long time before I was ready for life to resume. The world just keeps going, and I wasn't ready for it for awhile...to go to the store, or the bank, even church was hard. No matter what...please know that He is still carrying you. Our God is faithful. His grace is sufficient. Your pain is great, and there is no quick fix. Isaac is your child...you are a mother with a broken heart. God will carry you... He will never leave you. You know that...keep clinging to His truth...and when you are too weak to hold on...He will hold on to you. Your tears do not go unnoticed. His compassions never fail...they are new every morning. And He will make beauty from ashes...He already has used Isaac's life to touch so many. I'm so sorry for the pain and suffering you have endured and are enduring. We'll be praying.

In His Grace,
Kelly
http://sufficientgrace-kelly.blogspot.com

AJinVA said...

There isn't anything I can say to provide you comfort other than that my husband and I are praying for you and your husband. My husband who doesn't care at all about the things I read online, regularly asks about you and your family - you have even touched his life.

I pray that the doctors are able to give you some answers on the similarity between your first angel and Issac.

And to comment on your previous post - you ARE a hero. Hero's are people who do the right thing under circumstances that would cripple or stop the average person. Your strength and that your husband is clearly more than the average person has - and for that you are a hero. You are a hero in God's eyes - many people are called to bear a cross and to share their faith and few are able to do so. You have brought people to God with Isaac's story.

Anonymous said...

Thank you for sharing Isaac's story.
I will pray for you and Spencer!

Chrissy said...

Thinking of you an will be praying for you as well.

Anonymous said...

stacy you are my rolemotle
God bless

Jen said...

Oh, precious mother... My heart aches. So does my throat, because that's where my heart ends up reading of how you are. If I ever met you, I don't think I could hold you tight enough to let you know how I have cried and prayed for you.

I continue. Be strong, dearest, but don't bottle. There's something to be said for ashes and sackcloth... I'm sure I'd want to do it. *soft smile* maybe, perhaps, it' something you and Spencer could do one day.

Haute Cooking said...

My heart just aches for you and Spencer. I wish you both strength and ultimately peace in all of this. I really don't have anything to say that I haven't said in previous comments I've left and I can't offer the anything from the bible as I do not know it as some of the posters do. Ultimately, I wanted to post to tell you that your story has, and has continued to touch me. I also wanted you to know that I have not and will not forget you or perhaps more important for you to know, I will not forget Issac. I know that after a death, people "move on" and they stop talking to you about it. They stop asking how you are and over time you may feel as though people have forgotten or stopped caring. I wanted to let you know I (and obviously many others) still read. All of the best to you and Spencer.

Tami said...

I would like to tell you something that just happened...as I was reading your latest post, my daughter, Maddie, age 8, came up and asked about Isaac. I told her that he was a baby boy who was sick, and she asked if he died. I said, "Yes, he did, but he lived about 15 min..." I stopped. And I thought, no way! I am not shorting Isaac a minute of his life, so I said, "Isaac lived 16 minutes." Maddie thought for a little bit, and she said, "Wow. God must be taking really good care of him!" Just wanted you both to know we pray for your family every day! May God's peace be with you.

FSD said...

Stacy,

I learned of your story today through someone's blog. My heart aches for you and Spencer. I can't imagine the depth of you loss. Isaac was and is a precious little boy! I'm so sorry that you've had to endure so much, but as you've said in your posts, the Lord will use this for His greater purpose. He's already doing it.

Although your time with Isaac was brief, I'm so thankful the Lord granted you that time and the memories you'll carry with you always.

You and Spencer, as well as the rest of your family, are in my prayers. May you feel the Lord's presence and comfort like never before.

Shalom,
Ricka

Anonymous said...

Dear Stacy, Honey, even knowing much of your story from your blog, this entry tied it all together and tried to make sense of a situation in which there is no rhyme or reason that we can see. That is the loss of a child, your child, your Isaac who was so loved. You bet angry is one emotion that must be in there, and I can understand why it is hard to feel peace or God in the midst of this.

I can only guess at how both you and Spencer feel with him going back to work. I know many don't know this about me, but I lost much of my family in a large, commercial airline disaster in 1989. And I lost much of the rest in another large airline disaster in 2000. I hate looking at "the odds" too. And I really could not grasp the second time around HOW the world could still keep going when I was so knocked to my knees. If one of those people I lost had been my son, I imagine the pain is just magnified. And unfortunately, people may soon expect you to "put this all behind you". I say don't. I still say the only way "out" is through. You have every right to feel how you do, and be where you need to be. God understands, even when we can't. Gos is there, even when we can not feel His presence or peace.

You can rest assured we are still praying. We will pray that Spencer's return to work can be as easy as possible. We will pray that slowly "normal" won't hurt or anger you, or cause you fear. We also pray you can continue to hold Isaac in your heart, and not be afraid in a "normal" moment that you have forgotten him. That is so hard if/when that feeling pops up--it can really take you off guard. We will pray that when you can not feel the peace in the turmoil of emotions, you have the strength to hang on until you can feel it. Please rely on anyone and everyone you can while you and Spencer are making the transition of him going back to work. We are here if you need us. Much love, Jill and Andy

Zoey's mama said...

Oh Stacy... I'm still praying for you and your family. I still think of Isaac regularly too.
Yesterday, my daughter was being a monster. A real 15 month old terror. And despite every nerve that she had gotten on, I thought, I will take this any day over the alternative. I tell you this because I want you to know that your story, and specifically the way you tell your story, has really made an impact in my life and I appreciate it deeply.

I hope your dreams are filled with happy times with your sweet Isaac.

Angela said...

Thank you so much for that in-depth explanation. That must have taken you a long time and was most likely painful to relive. I am praying for you and Spencer that God will give you another baby in His time and that you will have an enjoyable pregnancy and a perfectly healthy baby. I hope that's okay for me to say. It's hard to know what's right and what's wrong, esp online to someone you've never met. But there are so many of us who follow your blog and have never met you, and the way you pour our your heart and share with us makes us feel like we know you as a friend. And a sister in Christ. And so I am just being honest with you as I am with all my friends. I pray that God will grant you a sweet child to love on earth as you love your two other babies that are in heaven with Him. Hugs and prayers, Angela

Nestie Becoming_untied said...

Stacy,
I don't know what to say anymore that I haven't already said at some point in all this. My heart aches for you, Spencer and the rest of Isaac's family. I think of and pray for you all daily as I am forever changed by Isaac's life and story.

CRASH05 said...

Stacy
I found your blog through a friend and have continued to tearfully read your posts. My heart breaks for you and your family but it also rejoices for the way you challenge my faith. I don't know that I could ever have your strength or your joy. Thank you for reminding us all to praise Him in the storms of life.

I am praying for you and your husband daily. And when I was prying for you today I thought of that song Thank You...I know that when you are walking the streets of gold people will thank you for impacting their lives through your story and your faith.

You are truly an amazing women of God.

Jocelyn said...

My heart is heavy for you and your husband. I have read several times that you want to get back to normal, but I think your normal has changed and you will find that through you Faith! Take time to grieve, take time to wonder why all of this is happening, take to to heal! I will continue to pray for you both and please know that Issac is a blessing to our world. He is looking over you, he is your angel!

Anonymous said...

Stacy.. my heart continues to break for you... I pray for you each day...

Jenny said...

Dear Stacy..

You've changed my mind.

You've changed my heart.

You've changed my faith.

I pray for you daily.

Jennifer

Anonymous said...

I just wanted to drop you a note to let you know that I am praying for you guys a lot. For all of the things you describe in the blog. I am just amazed at your wisdom and strength.
Love in Christ, Sarah

Julie said...

Stacy,
Holding you and Spencer close in prayer today and every day. I wish there were some words I could say to take away the pain you are feeling. I know the heartache you are feeling - the pain, the despair, the anger, the worry, wondering if it will ever get better. I know in your head you know it will - people have told you that, you know it - but it's hard to feel that.

I lost my first children (from my first pregnancy) - twins Devin and Elizabeth on 1/15/04. I was 22 weeks pregnant and went into labor. The doctors guess a combination of premature labor and a weak cervix caused me to lose them, but we don't really know for 100%. Sometimes when I read your posts, I am right back there on that cold January day and my heart just hurts. I know the pain...I feel it with you for your sweet Isaac...and for my Devin and Elizabeth. I long to hold them again. At times I am still angry and wonder why it happened. Why did God have to take my children so early, even though I know they are in a wonderful place with God. But why couldn't they be with me?

Again, I wish I had words to ease the pain, erase the worry, make it all go away. Just know that in time it will get easier. You never forget - there will always be a place in your heart, your life, your dreams, your family for sweet Isaac and your first baby. He is forever a part of you. Not a day goes by that I don't think of my babies. But one day you will wake up and something will be different. Or you will go to bed at night and realize it was a better day. It's hard to wait for that. I hated as each day passed...I longed for the pain to get better but I hated each day away from my babies. You know what I mean.

Know you are not alone. Know that some days will be good, some days will be bad. Feel what you feel...it's okay to cry, it's okay to smile, it's okay to laugh...it's all okay. Feel it.

"Hope is what happens as long as we breathe." Keep breathing....

Hugs and prayers,
Julie

JaybirdNWA said...

Thanks for sharing your story. It is difficult and sometimes impossible to understand this world but we cling to His promises and know that someday, all will be made right. Again thanks for sharing and keep the faith.

I Phillipians 1-3

Anonymous said...

Stacy, my friend lead me to your beautiful story. she was with me through my 4yr struggle of infertility and 3 miscarriages between my 10yr old daughter and 3 1/2 yr-old boy/girl twins. She held onto hope when I lost it. I was angry, too, at the statistic I had become. After conceiving my first child easily, still in my twenties I was among the 1% of women diagnosed w/ recurrent miscarriage, and secondary infertility on top of that. My third loss was due to Turner Syndrome in the baby; she was my girl whose heart stopped beating at 8wks. My dr suggested amniocentisis for next preg; I said no b/c 1. it increases chance of miscarriage and 2. any poor prognosis WOULD NOT MAKE ME TERMINATE WHATSOVER. Like you, MY LOVELY SISTER IN CHRIST, I placed God above the brilliant minds of medicine, somehow felt led to pray one night for boy girl twins, and wks later on my dad's birthday my Kevin and Katelyn were conceived, first w/ the power and will of God, and then yes, the awesome advances of medicine that we can trust.

Your story makes me think back to the autumn month in 2003 when I thought all was well with that little girl I carried, the day at 6wks when I DID see her heartbeat, and confirms that her life mattered. I thank you!!

Would I go back and get my once thought of perfect family of 2 children spaced 3yrs apart, w/ no miscarriages to mess up my happy memories? No way. I am now in Healing and Grief Ministry Training in my church, specifically to reach out to parents grieving the loss of children lost through miscarriage, stillbirth, early infant death, and abortion.

Let's continue to press on to that glorious day of reunion w/ our Lord and Saviour and sweet children, Stacy.

Kelly in OH

Huddle Girls said...

Dear Stacy,

My heart continues to break for you. I too know the pain of losing a child and at times it is just too much to bear. I will pray for you and Spencer as he returns to work this week. I know just how hard the return to "normal" can be. It has almost been 6 months since Gavin passed away and I am still having a hard time with "normal." Don't be too hard on yourself about this, unfortunately it is just part of the grief process. Thank you for sharing so much of yourself, I will continue to lift you up in prayer.

Blessings,
Amanda

Marc and Megan said...

I stumbled across your blog and just had to let you know that my heart aches for your loss. We have had our own struggles... the most recent one being the loss of our twin girls in July of this year. This road of grief has been difficult to navigate, but I am so grateful to say that fortunately God does not abandon us to do it alone. I may have moments when I refuse His help, but He is always there waiting and ready to help me carry this burden. I know He will be with you, too. Please know you're in my thoughts and prayers.
Megan

Kim said...

Your story breaks my heart, but your faith in God inspires me. I had a m/c at 15 weeks due to a chromosonal issue. I can relate to your feelings and your blog has helped me heal. I pray for you, your husband and your son daily. I wish you all the best.

Sandra said...

I was listening to a song on my iPod and thought of you and Baby Isaac. It's called Godspeed by the Dixie Chicks.

Anonymous said...

Stacy,

You have been on my mind and I pray that you are beginning to heal.

I am sitting here watching Oprah and they are talking about a little baby Eliot who died after 99 days after dealing with trisomy 18. It reminded me so much of your Issac. Celine Dion was also on the show and she talked about how all of the pictures and video taken allow little Eliot to life on. I believe that too of your Issac. I am not sure how you are doing it. I continue to hold both you and Spencer in my prayers. I want to thank you again for helping me rekindle my relationship with God. Please know that Issac has touched so many people and you and Spencer are truly heroes. Please take care!

Baseballs and Tutu's said...

How I wish the outcome were different. I wish I were powerful enough to change things for you..for sweet Isaac to be here with you each and everyday!

My heart breaks for you and Spencer!

Praying for you each day on numerous occasions! You cross my mind several times each day and I think of you all. Sweet Isaac...how much we all miss him even though we never met him. Praying for peace for both of you!

Jen said...

Still here, still praying- still aching with you, and for you. May your hearts be healed and may you feel His love today- just as Isaac is getting to feel it- up close and very personal!

Kristi said...

Stacy,

I am so very sorry for your hurt. I will keep praying for your peace and strength. I am just 10 weeks behind you in my pregnancy. We are told our Matthew will have the same outcome, if he makes it to birth. It hurts so much sometimes, I feel I can't possibly bear it anymore. Please be encouraged knowing how much you have encouraged me and countless others. I know He will carry me just as He has carried you. Thank you for sharing Isaac's life with us.

Mrs. H said...

Thank you so much for sharing. I am in the process of going back and typing in some of my journal entries to my online blog from my first few days after my loss. I had stopped blogging early in my pregnancy, then took up blogging again about a month after our loss. It's hard to relive the moments again, but going through the story makes it real, b/c it actually happened, when on some days it all just seemed like a (bad) dream.
Keeping you and your family in prayer tonight...
from a fellow mommy of a baby safe in the arms of God

Anonymous said...

Thank you for sharing your story, peace and blessing to you and Spencer

Anonymous said...

I am so so sorry for your loss. I too know the pain that you and your husband are going through. We lost our baby girl at 20wks due to anencephaly 4 years ago. There was nothing genetically wrong with her; it was just a fluke occurance. I just wanted to let you know, that we went on to have another healthy girl 2 years later, so keep the faith! I will continue to keep you and your husband in my thoughts and prayers and pray for comfort and peace for your broken hearts.

Angie said...

I just cry every time I come to your blog, but I've just got to see sweet Isaac's face again and again. I'm just so encouraged by your story and how committed to life you are. Thank you so much for continuing to share your story.

The Sloterbeeks said...

Your son's diagnosis sounds somewhat similar to ours. Our son Joshua was stillborn March 9, 2007 due to a condition called Limb-bodywall complex. It can vary in it's collection of anomalies. I am so glad you were able to enjoy your time with your son. I will keep you in my thoughts and prayers and would like to add you to my blogroll if you are okay with that.
Dawn

Anonymous said...

Stacy,

Thank you for sharing your story, the faith and strength you and your husband show is inspiring.

My wife is 14 weeks pregnant and our baby has been diagnosed with a cystic hygroma measuring 9mm. We are awaiting the resuts of the CVS test and should know chromosonal resuts later this week. The past 7 days have been by far the hardest of our life, thankfuly we have a beautiful and healthy 19 month old daughter to keep us smiling. We have put the diagnosis in God's hands and asked that he give us the strength to handle whatever he decides.

While I cried a lot while reading your story and looking at your pictures it gives me hope that we can get through this and that there are wonderful people out there to lean on. I can't thank you enough for sharing your story.

Our prayers are with you and your family.

Mike Durso - durso23@hotmail.com

Patricia said...

I randomly stumbled onto your blog and have been completely touched by your story and your journey. Thank you for sharing and God bless you.

Sincerely
Patricia