Tuesday, May 6, 2008

The Whole Story

Our journey began on March 24, 2008 when we received a call that the AFP blood test that screens for potential birth defects came back positive. It was about 4:30 pm on a Monday afternoon and my world stopped when the nurse gave me the info. One of my greatest fears was coming true, but I didn’t realize it completely.

Jose' wasn’t home yet. “Should I call him or tell him in person?” He had gone to a funeral that day for a little baby in our church who was born at 5 months and only lived for a month. I couldn’t believe the timing. My mind started racing, although there were no clear thoughts forming in my mind. All I could feel was fear and panic. I knew I had to call him and tell someone because I felt like I was going to explode. When he answered I could barely speak, the sobbing began as soon as I heard his voice. I asked him to come home as soon as he could and about the nurses call. His tone changed instantly and he came home right away. I called my aunt and a friend who reassured me that there are often false positives with the test and that I probably had nothing to worry about. Deep down, I knew that wasn’t our situation.

The nurse scheduled a Level II ultrasound and genetics counseling for that Wednesday, March 26. On Wednesday morning, Jose' and I were so nervous as the radiologist very seriously took over 100 images of the baby. He was kind and attentive, but couldn’t tell us what he saw on the screen, we had to wait for the doctor. He spent so much time taking images that I knew it couldn’t be good. Once he was done, we had to wait for the doctor to explain what she saw in the ultrasound. Since she was with another patient, the radiologist kept checking in on us to see how we were doing, he looked so sad that again I knew it couldn’t be good.

The Dr. evaluating the ultrasound finally came in and was very serious from the start. She said that there was as a lot of fluid throughout the baby’s body (hydrops) - surrounding the brain, abdomen, behind the neck, lungs, around the heart and in the arms. She explained that in an ultrasound fluid looks black and bone looks white - the intestines looked more like bone than fluid so there was something happening that was blocking the baby’s intestines from operating correctly. They detected cysts in the fluid behind the neck (cystic hygroma) and shorter femurs than normal. At that point she said something to the effect that the pregnancy wasn’t viable. I had to interrupt her to clarify. I didn’t completely understand all that she was saying about how sick our baby was – no one ever imagines they will hear such news. But when she said that the baby wouldn’t make it to term, the air in the room changed.

Our lives changed.

Our futures changed.

My mind couldn’t comprehend what she was saying, “How can this be? The test was supposed to be a false positive. Everything should be fine. No, you’re just supposed to tell us that everything is OK and whether we are having a boy or a girl. What are you saying?” We sat looking at her. Stunned. Silent. She said she was sorry and that we could take as much time as we needed and then go upstairs to talk to the genetics counselor. As she left, she said, “I’m so sorry” again and touched my back and I broke down. Jose’ and I looked at each in shock and disbelief as we hugged each other and cried. We were speechless so our tears spoke for us,“How can this be happening? Why is this happening to us? This can’t be our reality.”

We sat in shock in the waiting room for the genetics counselor. When she called us into her office she was kind and said how sorry she was that we had heard such bad news. She reviewed the AFP test results in detail. We knew the test had shown a higher than normal indication of a problem, but we didn’t know how high until then. Of the four categories tested, all four where out of whack. One was 7 times higher than normal, one 3 times higher and two were half of what they should be. Based on the AFP test results and the ultrasound, all of the factors led them to believe that the baby had severe Down syndrome. It wasn’t the type of Down syndrome that we are accustomed to seeing, it was far more severe and none of the doctors we talked to had seen a baby in that situation survive. She reviewed how chromosomal abnormalities happen and reassured us that based on everything they were seeing, there was nothing that we did to create the situation and nothing we could have done to prevent it.

She encouraged us to do an amnio to get the most information possible to determine the cause of the babies abnormalities. We were so overwhelmed that we couldn’t think straight about how to proceed. The amniotic fluid was low so there was a higher risk of potential complications from attempting the amnio and we were already so shocked from all that we heard we weren’t ready to make such an important decision. We wanted to meet with the OB/GYN to ask more questions before we moved forward with the amnio. An appointment had already been scheduled for that afternoon so we went to lunch and then returned for the appointment.

The OB/GYN said that in most cases they don't see the baby at this state. Typically the mother would come in for a prenatal visit and when they weren't able to detect a heart beat they would look further and determine the baby had these symptoms and passed away. They expected that to happen with our baby, not in 2 days or 2 months, but sometime in the coming weeks. We decided not to do the amnio that day but appreciated the opportunity to talk to the OB/GYN and get another perspective.

That night we needed to know that God cared and that He was present in our circumstances. Intellectually we knew that He was, but we needed some reassurance. At 9:28 pm a 3.1 earthquake hit Newport Beach, CA where we live. We have never heard of an earthquake hitting Newport Beach before. We felt God had sent us the message that He knew exactly what we were going through, that He was with us, and He gave us a reminder of His power.

Psalm 18:5-10 The sorrows of Sheol surrounded me; the snares of death confronted me. In my distress I called upon the Lord, and cried out to my God; He heard my voice from His temple, and my cry came before Him, even to His ears. Then the earth shook and trembled: the foundations of the hills also quaked and were shaken, because He was angry.

On Friday, we met with a perinatalogist, who is a specialist with high risk pregnancies. She did an ultrasound and saw fluid on the front of the baby’s neck and gave us more information about the impact of the fluid in and around the brain. These two factors were new negatives we hadn't heard on Wed. The good news was that there was more amniotic fluid. Based on the increased amniotic fluid we decided to have the amnio. Unfortunately, she tried twice and was not able to get any fluid. I experienced contractions and when the uterus contracted the fluid spread out to the point where she wasn't able to get a sample.

On Sunday, Jose' and I received prayer at church. They prayed for hope, restoration, comfort, peace and restful sleep for both of us and God's will. God has provided all of these. We shared Communion and therefore the baby had communion. They had a picture of Jesus and a precious baby looking at each other and smiling with Jeremiah 1:5 "Before I formed you in the womb I knew you. Before you were born I set you apart." At first when I looked at the picture my heart broke, but now I look at the picture with hope and peace - knowing that God would heal the baby (either on Earth or in heaven). And there is no better place for the baby to be than restored and in the arms of Jesus and Grandma Carmen (my mom) in heaven. When we walked in I looked like a human black cloud, and upon leaving there was a distinct difference in my appearance, my outlook and my level of peace.

On Monday, the OB/GYN was able to get the amniotic sample. She did the ultrasound and then moved quickly to make sure she didn't miss her window of opportunity. We were thankful to have aggressive and skilled doctors. She noticed the baby's heart beat wasn't as strong as it was the prior week and there wasn't as much movement in the arms and legs. She thought that the end was near. We were so relieved that she was able to get the sample, we were doing all that we could considering the circumstances.

On Friday, we had another appointment with the perinatalogist. We were prepared for her to say that there wasn’t a heartbeat or for it to be very faint. We were stunned when she said the baby had a normal heart beat. The fluid surrounding the heart and other areas of the baby was increasing so we knew there were still major problems. She thought that the baby might be able to hold on for another two weeks. Eventually, the fluid around the heart would cause the heart to collapse.

Since all the information we received was telling us the baby wouldn’t make it, we started to discuss our options. There was no danger to me if the baby passed prior to our next ultrasound. The Dr. asked if it was important for us to hold the baby. She thought there would be physical indications of how sick the baby was and that scared me. She said that if we didn't want to hold the baby, a D & E would be easier on me since it only takes about 15 minutes. But if we want to hold the baby we would need to induce and that is more difficult since it can take up to 40 hours since my body wasn't prepared to deliver. Although the D & E might be easier from a physical stand point, for me, I knew the emotional aftermath would be gut wrenching and it was not an option. We would wait until the baby passed and then induce. After talking with other women who have experienced stillbirths, I have found that too many women are not given an option to induce. My heart goes out to them as they grieve the loss of their children and deal with the anger that comes from not having been given a choice. Being able to hold our baby was such a gift.

For the next week we just waited – no appointments. It was awful and such a dark time. A long and lonely week. I felt so helpless and depressed. I had received a referral from a friend about perinatal hospice but I hadn't contacted her. On Friday, another friend sent an email about the concept and I finally contacted Jayne. She guided me through what perinatal hospice is, how they support families who have received a diagnosis like ours, research about what helps in the grieving process and how to make the brief time we had with our baby special. It was a huge turning point for me. That week I had felt like I was waiting for my baby to die and didn’t know what to do with myself. Talking to someone who understood was such a relief. She said, "I'm sorry" at least 10 times throughout our conversation and each time it touched me deeply because I knew she really understood. After talking to Jayne I realized we were only going to have a short time with our child and that I wanted to treasure that time and make it special. Based on that conversation I knew that we needed to name our baby, hold our baby, take pictures and try to get a mold of the little hands and feet. Check out http://www.perinatalhospice.org/ for more information and perinatal hospice locations throughout the US.

That afternoon we attended the funeral of a friends' father. We have had more funerals to attend in the last 3 weeks than we have had in the last 5 years. After talking with Jayne I felt so much stronger and less alone. Because of the comfort she offered me and the comfort we have received from so many loved ones we were able to attend the funeral and offer comfort to our friend, Melissa. As 2 Corinthians 1:3-4 says, Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.

We received the final amnio results via phone on Monday and it was the best news considering our situation. It was a chromosomal fluke as opposed to a genetic defect. There is no reason that we shouldn't be able to have healthy pregnancies in the future. We also found out the baby is a girl. We named her Chloe Faith. We were unsure about finding out the gender of the baby. Many people prayed for us regarding the decision and those prayers were answered. On Wed. night when I couldn't sleep the name Faith came to me as a middle name. Faith is what has seen us through and by faith we know that we will be reunited with our daughter in Heaven one day. I wondered about the first name and out of the blue came Chloe. Then as I started to think of boy names the thought hit me, 'you don't need boy names'. And from that moment I've known we are having a little girl and her name is Chloe Faith. God certainly answered our prayers, gave us peace about the decision and gave us the name. We didn’t know what Chloe meant when we named her but looked it up and found it means “blooming.” Faith “…denotes unquestioning belief and complete trust in God.” Blooming Faith. How perfect.

On Tuesday, I read some of my favorite children’s books to Chloe. It is something I looked forward to doing with her once she was born. I pulled out a few titles that I had purchased over the years and had given to my goddaughters. I told Chloe about the my precious goddaughters Emily, Kelsie and Annie. We had been together a few weeks prior at their Grandmothers house. Who could have known that would be their only time together.

Then I picked up a book I had read once and hadn't thought about for several years. The Trellis and the Seed by Jan Karon. She is one of my favorite authors. My goddaughters mother and my dear friend, Cindy, turned me onto Jan Karon and her Mitford Series of books. I picked up The Trellis and the Seed not really remembering what it was about. As the story talked about flowers and blossoms I saw so many connections to Chloe. We had just looked up the meaning of her name a few hours prior. I figured I was a little emotional and that everything would make me think of Chloe. When I read the line, God's timing for you is different, I broke down sobbing. What a blessing that God would use this little book to speak to my breaking heart. It was another reminder that we are not alone. That He knows what is happening. That He has a plan. That Chloe is in His hands and so are her parents. His timing is different than we would have planned, but that is why He is God, and we are not. His ways are perfect, even when they don't make sense to us.

Jayne, my friend from perinatal hospice, sent us a link to a website about a family who experienced a similar loss http://www.audreycaroline.blogspot.com/. It was perfect timing. The first page of the site had a letter from the mom to her baby girl who passed away 2 ½ hours after birth. Jose’ and I read the letter and wept. It was so beautiful and it prompted Jose’ to write a letter to Chloe that night and read it to her. God's timing is so perfect.

Jose’s beautiful letter to Chloe:

My baby girl, how I love you. How I dreamt of holding you and watching you grow up. I will miss the opportunity to chase little boys off when they come over trying to sneak a kiss from my baby girl. I will miss watching you ask your mom to comb your hair. How I will miss showing you how to pray. If and when you leave us here on earth, your Grandma Carmen will be waiting for you to introduce you to all the Saints. You will then be skipping and running on the streets made of gold. Do not worry because Jesus and Grandma will be there to pick you up when you fall. You have brought a new meaning to my life. For instance, I would be so angry or frustrated with some person or something, but you have brought perspective to what it means to hold on to life. You have shown me how to love your mommy more and more every day. Thank you my baby girl for showing me how big and loving God really is. I love you and cannot wait to see you once again in Heaven.

Your Daddy

The next day, April 16, we had another ultrasound to check Chloe’s heart beat. We knew our time with Chloe was short so we decided to make the morning special. We went to one of Jose’s favorite restaurants for breakfast, then walked on the beach and took pictures of my belly with a pink ribbon around it and our feet in the water to mark Chloe’s first time in the water. It was such a special memory.

That afternoon at the ultrasound, the OB/GYN didn’t see a heart beat in our little Chloe. She was in fact restored in the arms of Jesus and her Grandma Carmen. She was whole, healthy and able to dance around the way that all little girls should. We were happy for her, but sad for us. We treasured the short time we had with her, but of course wish things could have been different. It was hard to comprehend that she was gone so soon.

On Friday, April 18 the OB/GYN inserted a laminaria in my cervix to help speed up the induction. I checked into the hospital Saturday morning around 11:00 am. Chloe Faith arrived Sat. night at 9:40 pm. We had an excellent doctor and wonderful nurses who were kind, compassionate and skilled throughout our stay at the hospital. Chloe was 7.6 ounces and she was 17 cm long. They were able to get precious little feet prints for us to take home.

Jose' and my Dad were there when she was born. Jose's mom, sisters, and my brother and sister-in-law came back to the hospital as soon as they heard she was born. Everyone got to spend special time with Chloe, and Jose’ and I had private time with her to hold her and say goodbye. Jose’ stayed at the hospital all night with me - he was so amazing!!!

It has become clear that Chloe's life was intended for much more than her physical body. Her purpose was far greater. Her name says it all, "Blooming Faith." God has been with us each step of the way and He has provided blessings, protection and peace during unfathomable circumstances. And we pray that faith (“unquestioning belief and complete trust in God”) will bloom in all who hear her story. Chloe is alive, whole and restored in Heaven - things can't bloom unless they have life. We are so comforted to know that she is in the best possible place and that we will see her again.

We are so thankful for God and our family and friends who supported us through the hardest 4 weeks of our lives. Their prayers meant more than they will ever know. We can’t imagine how anyone could get through something like this without support and the peace that passes all understanding – and yet we know that many try. Our prayers are with you if you find yourself on this journey of grief and loss. Hold on, you will make it through the pain.

On October 2, 2009 we gave birth to Chloe's little sister, Sophia Carmen. She is a healthy, beautiful and sweet tempered baby. We are so grateful for her, her health and the precious gift of being her parents. We will always remember Chloe and have a special place in our hearts for children with Down Syndrome. There were certainly times during my pregnancy with Sophia that I experienced fear, but God was faithful to His promise.
At times, we still think of what could have been, but we know that God had a different plan. If Chloe had survived, we wouldn't have Sophia. We trust God's plan for our family and are grateful for each member. We know that we treasure Sophia more because of Chloe.

We don’t understand why the loss of child happens, but we know that our precious little baby is in heaven and she will never experience pain or discomfort again. It doesn’t lessen our pain, but it does give us hope for the future knowing we can be there with her some day. We pray that if you find yourself on this journey, that you will not walk this road alone. Reach out to us, the perinatal hospice in your area, or someone who has experienced a similar loss. It will comfort you and give you the strength to continue. You will get through this and there is joy and hope on the other side of your mourning.


Lori said...

Dear Kirsten and Jose',
What a beautiful tribute and testament to love you have created for Chloe Faith. Because of your strength and your faith in God other parents in your situation can find hope and assurance. God has many plans for your future and He will guide you along your path, whether we know it is the right way at the time or not. My thoughts and prayers continue for you both.

Debbie said...

I found your blog while reading a friend's blog. Thank you for sharing your thoughts and experience. I have found the strength to help me heal from others that have similar trials. We pray for healing and peace for your family.

momhad4 said...

I found your beautiful blog through Audrey Caroline's blog. I am not a blogger, but love to keep up with a few. You'll now be on that list! I am a mother of 4....Grayson is almost 6, Addie Hart 3, and 2 precious angels in heaven. I had a miscarriage my first pregnancy at 9 weeks. Actually, it was sooner that we knew things were not right, we never saw a heartbeat. I had a hard time accepting that, so I waited a couple of weeks and had another sonogram..no changes. My Dr. was so kind, he just said things didn't develop properly, nothing we could've done. Still, I was angry with God. How could he do this to me? I really wanted this baby and there are babies being given up or killed every minute! Finially, I had the D&C, which was awful. I had nightmares about it. I'm a nurse and have worked in surgery during these cases so I know what it's all about. Devasted. I felt like I had been robbed of my baby. It took me a year to even think of trying again. I really never dealt with the loss very well. Then, along came Grayson. Perfectly normal pregnancy, except it lasted way too long! He didn't want to come out! All I'll say about that is: if your OB says I think we should do a section, just do it! I didn't and haven't been the same! He brought such joy and happiness to our lives and still does! A year later I got pregnant again...planned, of course! I think I have a say in my life, but am realizing I don't at all. It's all in God's hands, at all times and in every circumstance. Our first appointment, was just like before, my levels were low, but let's recheck next week. This went on for 2-3 weeks. We had another sonogram and saw a heartbeat. I was elated! Maybe this time would be different. In the next 2 weeks, the baby died...no heartbeat to be found. I again didn't want to accept this, so had another sonogram to confirm. It was true, God had chosen to take another sweet baby from me. Yes, I was a little angry, but more just so disappointed. But, I thought, at least I've got Grayson. That made it a little easier, but not much. I wanted my next child. Why couldn't God let this be? It was so hard and I cried until I could cry no more. At this time, I had a wonderful pastor to comfort me. He said it was o.k. to let God know I was angry, sad, disappointed, confused, whatever. Just go to God. He was and still is in control of all things and would give me just what I needed or didn't need. I wanted to know why...what is the reason for this? Why me Lord, was my cry. As if you can't tell already, I'm a little controlling and God has taught me that I have no say in my life. I love God and am thankful for these 2 precious babies that are in heaven, but I'm still saddened by it and mourn for those who have to go through it or things even worse. I had another D&C because that's my Dr. wanted me to do...again at 9 weeks. In 2 months time, I was pregnant again. But, my levels were low. Things were looking the same. My Dr. had researched the whole chromosome thing and did what he had found worked for some. I took a baby Aspirin for the first 5 months I think. Somehow, that would help with the way the chromosomes lined up. Well, that and prayers worked. Addie Hart came 2 days early, healthy and beautiful! Thanks be to God! There is hope in Him and in Him alone. That I have learned! It's ok to cry, to be a little angry even, but don't lose hope. God knows the plans He has for you... plans to give you a future with hope. I'll write again soon...my husband says it's about bedtime! I'm struggling with vit.B-12 defiency and have been really sick, so I need lots of rest! I will pray for you to have peace and know your baby is in heaven with my 2 and with Audrey, and tons of others and they are perfect in every way. I can't wait to meet mine, were they boys or girls? God gave me one of each here on earth and I am sooooooooooo grateful. I take for granted the days I spend with them sometimes. But when I'm reminded of how precious life is, I stop and look at them and just hug and kiss them as much as they'll let me! Do try again soon to get pregnant. Don't be so fearful as I was the first time. God is in control! I will be keeping you in my prayers and reading your wisdom as well! Thanks for sharing and encouraging others. God bless you!

Anonymous said...

Dear Kirsten and Joe,
God bless you both. My husband and I lost our baby girl, Kayla Faith in 2000. I felt so touched by your family. Your story has touched my family and I in many ways. Thank you for your blog. It is so important to tell Choloe's story...God has a purpose for everything even if we don't understand it at the time. I will continue to check in on your blog. God bless you and your family.

boltefamily said...

What a story. I am so glad you wrote it out. I am blessed to read it. I am so deeply sorry for your loss. Please please know you are not ever alone in this walk. I don't live anywhere near you but after reading your story I feel like you know a piece of my own heart that not many people know... thank you for sharing! I will be praying for you and Jose!

Much Love
Kristy Bolte

Anonymous said...

Dear Kirsten & Jose'

I am strengthened by your words and committed faith. Thank you for sharing your experience. I hope it has helped with your grief which I know is tremendous. I believe that your sharing will provide comfort to countless others, who may never step forward and tell you how it has helped them.

love Donna

Carla Burlando said...

Chloe Faith is an absolutely beautiful name! Your faith is beautiful too a true testiment of Gods love ,mercy and sovereignty. Thankyou for sharing the story of little Chloe. Who, even though here for such a short time, made a huge impact on your hearts and you continue to pass that on to others.
The part about the earth quake and the verse following gave me chills. I think sometimes that we forget that this wasn't the way God designed the world to be. Yes he can use these things for His glory. Pain, suffering and death make him angry and cause him greif as well. We have faith though that someday it will all be redeemed and every tear will be dried.
I could relate to the story of your daughters diagnosis and death as we lost our first son at birth (Trisomy 18) and lost a baby to a miscarrage a couple years later. I now have three beautiful children here with me and 2 waiting for me in heaven.