Mikayla's Grace is our way of giving back to our community, and keeping our daughter Mikayla's spirit and memory alive, while helping other families.
We hope to give comfort and support to parents who find themselves in the stressful situation we were in. While our experience in the NICU with Mikayla was brief, it gave us a glimpse into how difficult it is to have a very sick baby in the NICU. Most parents do not expect their baby to make their arrival and then be in such a fragile state. The NICU care packages are intended to help provide items that help parents make memories of their time in the NICU and make their lives a little easier.
We hope to give comfort and support to parents who find themselves in the stressful situation we were in. While our experience in the NICU with Mikayla was brief, it gave us a glimpse into how difficult it is to have a very sick baby in the NICU. Most parents do not expect their baby to make their arrival and then be in such a fragile state. The NICU care packages are intended to help provide items that help parents make memories of their time in the NICU and make their lives a little easier.
The angel memory boxes are to provide parents leaving the hospital without their babies something to fill their empty arms. Leaving the hospital without Mikayla was one of the worst feelings in the world. The keepsakes we received while Mikayla was in the hospital are few, but will be treasured for a lifetime. We are providing items that have brought us comfort and other items that we wish we'd received during our hospital stay. We want to ensure that other parents will have the opportunity to have special moments to remember their babies gone too soon.
In April of 2011 we experienced the loss of another child, our son Chase Gabriel, at 10 weeks. That experience opened our eyes to how difficult it is to lose a child even during the earlier stages of pregnancy. We realized that these losses are treated much differently than the later losses, and that these families get very little, if any, support. We hope to expand the mission of Mikayla's Grace some day to include support for women experiencing early miscarriages as well.
When a baby leaves this earth, there will never be any new memories to make with that child, but as a good friend of ours said,
This is our way of making memories in honor of Mikayla and Chase. We are honored to be able to share our story with you, and the world.
As my husband says, the story really started when we fell in love almost 12 years ago. We have a son who was born July 2008. His pregnancy was perfect, and while we had a few post-partum complications we had no reason to not believe we would bring another child into this world just as easily. We found out we were pregnant with our second child in early January 2010 and were overjoyed! We were so excited to bring another child into our lives and to make our son a big brother! We knew our lives were about to change forever...we just did not know how much.
We started telling our family right away, but then at 6 weeks I started having some faint bleeding and thought I was having a miscarriage. Even though I only had this baby with me for a mere 3 weeks at this point, we had already begun to make room in our lives for this new life and it was truly devastating. After finding out during an ultrasound that we had a healthy baby with a strong heartbeat, we were followed closely due to the bleeding. They never determined if cause of the bleeding was due to a subchorionic hemorrhage or possibly vanishing twin syndrome, but when it resolved at 10 weeks we were told that the bleeding shouldn’t cause future problems with the pregnancy.
We started telling our family right away, but then at 6 weeks I started having some faint bleeding and thought I was having a miscarriage. Even though I only had this baby with me for a mere 3 weeks at this point, we had already begun to make room in our lives for this new life and it was truly devastating. After finding out during an ultrasound that we had a healthy baby with a strong heartbeat, we were followed closely due to the bleeding. They never determined if cause of the bleeding was due to a subchorionic hemorrhage or possibly vanishing twin syndrome, but when it resolved at 10 weeks we were told that the bleeding shouldn’t cause future problems with the pregnancy.
Of course, as we've learned, anything can happen. It was a challenging pregnancy, but I knew it would all be worth it when I saw my baby’s face for the first time…I did not know that I had so little time left with her in my precious womb.
I was 24 weeks and 6 days pregnant, and Mikayla's birthday started off just like any other Sunday summer day could. We went to church that morning and I played with my son and the kids in the nursery. Right after church, we went strawberry picking at a local farm. It was a beautiful sunny day perfect for picking strawberries, but we only got one flat picked before I decided I was too tired. Afterwards, I started to feel a lot more lower back pain and some pressure in my pelvis that was quite different from what I'd experienced before. It didn't get better as I relaxed. I started to wonder if this pain could be contractions, and suddenly had this ominous feeling that something wasn't right.
We went to the hospital around 10 pm and they got us right up to the Labor & Delivery. The nurse hooked me up to the fetal monitor and we were so thankful to hear Mikayla’s heartbeat. It was a strong 150, but she kept losing the heartbeat, and it was confirmed that I was indeed having contractions. Within moments there was a team of people in the room. When the doctor checked me I was 5 cm dilated and fully effaced. They told me the only chance of Mikayla surviving would be with an emergency c-section, since her heartbeat was dipping and she was in a breech position.
Our precious daughter, Mikayla Grace, was born at 11:04 pm on June 13, 2010 at St. Mary's hospital in Madison, WI. She was extremely premature (micropreemie), weighing only 1 lb 5.5 oz.
I was 24 weeks and 6 days pregnant, and Mikayla's birthday started off just like any other Sunday summer day could. We went to church that morning and I played with my son and the kids in the nursery. Right after church, we went strawberry picking at a local farm. It was a beautiful sunny day perfect for picking strawberries, but we only got one flat picked before I decided I was too tired. Afterwards, I started to feel a lot more lower back pain and some pressure in my pelvis that was quite different from what I'd experienced before. It didn't get better as I relaxed. I started to wonder if this pain could be contractions, and suddenly had this ominous feeling that something wasn't right.
We went to the hospital around 10 pm and they got us right up to the Labor & Delivery. The nurse hooked me up to the fetal monitor and we were so thankful to hear Mikayla’s heartbeat. It was a strong 150, but she kept losing the heartbeat, and it was confirmed that I was indeed having contractions. Within moments there was a team of people in the room. When the doctor checked me I was 5 cm dilated and fully effaced. They told me the only chance of Mikayla surviving would be with an emergency c-section, since her heartbeat was dipping and she was in a breech position.
Our precious daughter, Mikayla Grace, was born at 11:04 pm on June 13, 2010 at St. Mary's hospital in Madison, WI. She was extremely premature (micropreemie), weighing only 1 lb 5.5 oz.
She was rushed immediately to the NICU and they didn't need to tell us that her chances of survival weren't good. We knew if she did survive that it would not be easy and that she'd live many months in the hospital. This is just not the way it was supposed to happen...she was supposed to be safe in my belly, with many more months to grow and prepare to enter this world.
We were glad to finally see her, but it was difficult to see her hooked up to all of those machines even though we knew that they were keeping her alive. Definitely not the way we envisioned meeting this baby...I should have been cuddling with her after the birth, and breastfeeding her, not sitting helplessly outside her isolette watching her fight for her life. They said that initially she was very strong, but that typically most problems come on after a day or two when the immaturity of the lungs starts to have an effect.
We were glad to finally see her, but it was difficult to see her hooked up to all of those machines even though we knew that they were keeping her alive. Definitely not the way we envisioned meeting this baby...I should have been cuddling with her after the birth, and breastfeeding her, not sitting helplessly outside her isolette watching her fight for her life. They said that initially she was very strong, but that typically most problems come on after a day or two when the immaturity of the lungs starts to have an effect.
We were exhausted, after not having any sleep, and I was hooked up to an IV with a catheter while recovering from my surgery, but all we wanted to do was to go to the NICU. The NICU nurses were great at explaining everything to us but the exhaustion and shock made it difficult to focus. We were so happy when they told us that we could open the isolette and touch Mikayla. She looked so fragile and at first I was scared that I would hurt her, but it was so amazing to touch her and see her tiny little fingers and toes. Her skin was almost translucent and very thin, but she was tiny and so beautiful in our eyes. Her little eyes were still fused together, but she could grip our fingers and would respond to our voices. She did have some improvements in her stats that first day and we got to visit the NICU several times.
That afternoon our priest came to baptize her. I was not feeling well, but I did make it down to the NICU to be there. That evening we went back again before we could go to bed, and we both talked with Mikayla and said some bedtime prayers. It was so hard to leave her, but we were glad to know that she was doing pretty well and we went to bed that night feeling positive about our day.
In the morning, Mike got up early to go home to help get our son ready for daycare, but before he could do that he had to go check on his baby girl. It was 5:30 am and the NICU nurse said that Mikayla was doing well throughout the night. Just a few hours later, the neonatologist came to tell me that around 6 am Mikayla starting having difficulty breathing and that they'd been trying a different kind of breathing machine called an oscillator. Her acid levels in the blood were off balance and they were suspicious about a brain hemorrhage, but didn’t have confirmation at that time. She said the prognosis was not good, so she recommended that I come be with Mikayla.
I was terrified, and called Mike to rush back to the hospital. Every moment he was gone, I was afriad he would miss seeing her alive once more. When I first got there it appeared that she was fairly stable, and I got to hold her tiny hand again. Suddenly her blood pressure decreased, and all the nurses were crowded around her giving chest compressions and using a manual bag for oxygen while they tried to get the respirator working again. It was so frightening, but they stabilized her once more before bringing in the ultrasound to check for a brain hemorrhage. It was determined that Mikayla did indeed have a large brain hemmorhage, and they told us that with the severity of the hemmorhage there wasn't anything they could do to help her.
After such a good first day, we were so devastated to know that these would be our last moments with our daughter.
The doctor told us that we could hold her, and we didn't hesitate. We knew that we wanted to hold her in our arms, and make sure she knew how much she was loved before she left us. We were so glad she had a few moments of peace in our arms, after such an unfair entry into our world.
She finally went to her heavenly home at 11:30 am on June 15, 2010. She lived almost exactly 36 hours.
Our NICU nurse was so great and gave us all the time we needed to be with our daughter. We got to bathe and dress her. We had opportunity to get some photos taken with Mikayla from Now I Lay Me Down to Sleep. We went back to our room and took her with us all swaddled in a pink and white blanket. Our NILMDTS photographer, Danielle, was amazing and made us feel like Mikayla was the most perfect little baby girl. We all marveled at how cute she was and how tiny all her little parts were, noticing all the things we didn’t have time to while she was in the NICU. It was such a special time and although she had passed on at this point, we enjoyed that time to treasure and cuddle her.
She was so tiny, so beautiful, and we could just not get over how perfect she was. She was just too small to survive in this world. We are glad we had those 36 hours, but it can't possibly make up for not having her with us for another day or for our whole lives. It does help to have those memories until we meet again in Heaven someday.
In the morning, Mike got up early to go home to help get our son ready for daycare, but before he could do that he had to go check on his baby girl. It was 5:30 am and the NICU nurse said that Mikayla was doing well throughout the night. Just a few hours later, the neonatologist came to tell me that around 6 am Mikayla starting having difficulty breathing and that they'd been trying a different kind of breathing machine called an oscillator. Her acid levels in the blood were off balance and they were suspicious about a brain hemorrhage, but didn’t have confirmation at that time. She said the prognosis was not good, so she recommended that I come be with Mikayla.
I was terrified, and called Mike to rush back to the hospital. Every moment he was gone, I was afriad he would miss seeing her alive once more. When I first got there it appeared that she was fairly stable, and I got to hold her tiny hand again. Suddenly her blood pressure decreased, and all the nurses were crowded around her giving chest compressions and using a manual bag for oxygen while they tried to get the respirator working again. It was so frightening, but they stabilized her once more before bringing in the ultrasound to check for a brain hemorrhage. It was determined that Mikayla did indeed have a large brain hemmorhage, and they told us that with the severity of the hemmorhage there wasn't anything they could do to help her.
After such a good first day, we were so devastated to know that these would be our last moments with our daughter.
The doctor told us that we could hold her, and we didn't hesitate. We knew that we wanted to hold her in our arms, and make sure she knew how much she was loved before she left us. We were so glad she had a few moments of peace in our arms, after such an unfair entry into our world.
She finally went to her heavenly home at 11:30 am on June 15, 2010. She lived almost exactly 36 hours.
Our NICU nurse was so great and gave us all the time we needed to be with our daughter. We got to bathe and dress her. We had opportunity to get some photos taken with Mikayla from Now I Lay Me Down to Sleep. We went back to our room and took her with us all swaddled in a pink and white blanket. Our NILMDTS photographer, Danielle, was amazing and made us feel like Mikayla was the most perfect little baby girl. We all marveled at how cute she was and how tiny all her little parts were, noticing all the things we didn’t have time to while she was in the NICU. It was such a special time and although she had passed on at this point, we enjoyed that time to treasure and cuddle her.
She was so tiny, so beautiful, and we could just not get over how perfect she was. She was just too small to survive in this world. We are glad we had those 36 hours, but it can't possibly make up for not having her with us for another day or for our whole lives. It does help to have those memories until we meet again in Heaven someday.
This began our journey through the darkest days of our life.
After 9 months of grieving the loss of Mikayla, we decided that we were ready to try to create another life, another child. We were scared, but hopeful. We found out on Mikayla's nine month birthday, March 13, 2011, that we were pregnant with our third child. Right from the start we decided that we wanted to cherish each day of this pregnancy, knowing now that sometimes you don't get to bring every baby home. We were so excited about this third baby, and while at first were filled with fear, after several weeks began to feel hopeful.
It was not a pregnancy without stress, but physically everything was going well. I felt that the daily nausea and the fact that I'd made it to almost ten weeks without any bleeding were good signs that everything was fine. We were shocked beyond belief to find out at a routine ultrasound, on April 22, 2011, that our baby did not have a heartbeat and was measuring several weeks behind. At that moment, our world came crashing down again and all hope was gone. After several days we got confirmation that our baby had indeed joined their big sister Mikayla in Heaven, and I was experiencing what the medical community calls a "missed miscarriage." Eventually I ended up having a D&C, and while this journey was over physically the emotional healing had only begun.
After losing Mikayla, we knew that we may not bring home this third baby, but we were not prepared to lose him in this way. We thought we had much more time. Our hearts are broken that we will never hold him and will need to wait until we meet again in Heaven to see his face.
Several weeks after this, we found out that this baby was a little boy, who had Trisomy 22, a condition that is incompatible with life. Even if I had carried him further in the pregnancy, he wouldn't have been able to survive. We named him Chase Gabriel, and while we may not have held him or have pictures of him, we still honor his life and look forward to being reunited with him in Heaven someday.
Deciding to have another child after multiple losses is not an easy decision. We were blessed to bring home our "rainbow baby" Gavin in May of 2012. In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm, but the beauty of the rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope. It was a long, difficult pregnancy with visits to the high-risk perinatologists every 2 weeks, a cerclage at 13 weeks, weekly P17 (progesterone) shots, and bedrest, but in the end we had a healthy baby born at 36 weeks.
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