Monday, January 31, 2011

Amazing Mikayla Grace


I'd love for you to meet Melissa the author of the blog Amazing Mikayla Grace.   This beautiful blog is to honor her sweet angel daughter Mikayla.


Our second child, Mikayla Grace, was born too soon at 24 weeks 5 days on June 13, 2010. She was with us for a sweet, but too short, 36 hours until she went to her Heavenly home. This is my continued journey through grief, healing, and finding hope once again.





As my husband says, Mikayla's story started when we fell in love almost 11 years ago.  We have a 2 year old son born July 2008, and we were so excited to bring another child into our lives and to make him a big brother!  We found out we were pregnant with our second child in early January 2010 and were overjoyed! The same day I took my positive test, I had a little pink spotting and my heart just dropped…maybe I was having my period after all. I did several more tests, which were all positive, so I thought it was nothing. We started telling our family right away, but then at 6 weeks I started having some faint bleeding on Friday morning. Over the weekend the bleeding continued and it was at this point where I actually admitted that I was probably having a miscarriage. It was so painful and we said a lot of prayers to ask God for strength to help us through it. My husband bought a candle to remember our baby as we hoped this angel was in heaven. Even though I had 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 baby and it was truly devastating. On Monday, we went to see the doctor, and the exam didn't tell her much besides that my cervix wasn't open and there wasn't any tissue visible. They did an HcG blood test which she explained would likely not tell us much until we do a second one. I felt in my heart I had lost my baby, but for some reason felt that I needed this information too. I continued to have more blood and my cramping picked up as well. Any bit of hope I had that this may be normal bleeding was gone.


BUT on Wednesday, my doctor called to say that my Beta HcG test on Monday was really reassuring and normal (167,000), so she ordered an ultrasound for Friday. I was in such shock and didn't really understand how it could be normal with so much bleeding. I was still extremely nauseous and had several big gushes of bright red blood. Going to the ultrasound appointment was not fun at all, but I was really hoping that it would give us some answers. I knew that the tech wouldn't probably tell us much, but she was taking all these measurements and was totally silent. I figured that her silence meant there was no baby and that I had indeed miscarried, but then suddenly she said "heartbeat is 139." I will never forget how shocked I was to hear that....there is a baby still alive in there? What a miracle!! I was told that the baby was fine and that I had something called a subchorionic hemorrhage that explained the bleeding. She said that most likely this would resolve over time but that the bleeding may continue. There was nothing to do, but let mother nature take her course and wait. It was hard to know whether to be excited again or scared at this point. I was put on pelvic rest and we did another ultrasound at 9 weeks. We were so relieved that in the first view of Mikayla she was moving. I was still having bleeding though, so I definitely didn’t feel like I was out of the woods yet.

My bleeding stopped at about 10 weeks and we had a third peek at Mikayla at 13 weeks. At this ultrasound they said that she looked perfect, but the radiologist reviewed all my ultrasounds and didn't see any sign of hemorrhage now, but also didn’t think that it was one to start out with. They suspect that I had a twin pregnancy and that the bleeding was actually a loss of one of them. It was crazy to think about, but really it does seem to make sense with what had happened. I guess my mother's intuition about losing the baby when I thought I did really was right. I'm glad that we did go through that mourning process weeks before because it did make hearing this news a little easier. So we may actually have two angels in heaven, but will never know for sure. I was, however, glad to hear that everything looked normal and they didn't seem to think I should have any problems due to this "vanishing twin syndrome." Overall, it is a slightly better prognosis than the SCH in the fact that it shouldn’t cause problems with the placenta or increased risk of preterm labor etc. Of course, as I've learned, anything can happen.

This was the first time I could actually be excited about being pregnant and really enjoyed my second trimester. I started feeling Mikayla move around 19 weeks and had our next ultrasound at 20 weeks and she looked great! We decided not to find out the sex, but there was this piece of uterine tissue (referred to as either an amniotic band or uterine synechiae). They said it was just scar tissue and that at this point it is nowhere near Mikayla

I was 24 weeks and 6 days pregnant, and the day 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. And although I'd been having some lower back pain this day, I've been having more back pain with this pregnancy in general with lifting my 30 lb son, so it didn't seem any different than I'd experienced in the past. We went back to home to clean all the berries and I was pretty tired, so mostly was sitting down but I was on my feet quite a bit too. Afterwards I was tired and was starting to feel a lot more lower back pain and some pressure in my pelvis that was quite different from what I'd been experiencing before. It didn't get better as I relaxed, and after I went to the bathroom the pressure in my pelvis started to get worse. At that moment I also remembered that the previous day I had a change in having some more mucous discharge. Looking back now, this mucous discharge with probably my mucous plug, but even having had a previous pregnancy I didn’t even suspect it and didn’t experience a mucous plug loss with my first pregnancy. I don't know why, but I started to wonder if this pain could be contractions and all of the sudden had this ominous feeling that something wasn't right. I started this pregnancy with a little distrust in my body to signal early labor, because with my son I had contractions all day at work and was 8 cm when I finally felt like I needed to go to the hospital. So I probably have an abnormal high tolerance for uterine pain…a good thing if you’re in labor at full term, but NOT a good thing at 24 weeks.



Around 9 pm I called the on-call doctor and he said it sounded like maybe I was having contractions and that I could come get checked that night or in the morning. I didn't think I'd be able to sleep, so we went to the hospital around 10 pm and they got us right up to the L&D. The nurse had me do a urine sample saying that it could be urinary tract infection. I was praying that it was something simple, but deep in my gut I just felt like it was something more serious. She hooked me up to the fetal monitor and I was so thankful to hear Mikayla’s heartbeat. It was a strong 150, but she was moving around a lot and was very low (now we know she was in the birth canal) and the nurse kept losing the heartbeat. She realized the heart beat kept dipping and that I was indeed having contractions, although I didn’t really feel them. She left the room and came back, warning me that in a few seconds the room was going to get quite busy, because she had to bring in the resident doctor to check me and start an IV. I had a few more contractions and I was shaking because I was so nervous and scared. It was agonizing not knowing what was going on, but thankfully my husband was right there holding my hand and coaching me through it. The resident was actually very calming, but when she checked me I was 5 cm dilated and fully effaced. I knew that was very bad news and her expression confirmed my worst fears. I was so scared, and immediately all I could do was cry because I knew at that point that I was too far into labor for them to do anything. 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. They said I could try to labor naturally, but that it would be harder on her, and I knew immediately that just wasn't an option. Then they told me they were going to get me to surgery as soon as possible and that I would be under general anaesthesia which meant my husband could not be there with me and I was so scared. As they were prepping me for surgery, the surgeon came in, and it was definitely not the person I wanted to see. It was the doctor that I had a bad experience with during my post-partum hemmorhage after my son's delivery and I didn't have much confidence in her. Unfortunately, I didn't have a choice, and all I really wanted at that moment was to make sure they could get Mikayla out safely.



Our precious daughter, Mikayla Grace, was born at 11:04 pm on June 13, 2010. They had to rush her off to the NICU right away, but I was so excited when they told me that she was a little girl. We had wanted a daughter and she was the first granddaughter in our family, so of course we were overjoyed. But then they said that she was extremely premature, weighing only 1 lb 5.5 oz, and my heart just broke. They didn't need to tell me that her chances of survival weren't good, and even 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. I was so glad to finally see her, but it was so hard to see her hooked up to all of those machines even though I knew that they were helping her…definitely not the way I 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. They took me back to my room, but all I could think about what you and the events that had just transpired. In the morning I was so exhausted, after not any sleep, and I was hooked up to an IV with a catheter still but all I wanted to do was to go to the NICU. I was still on a lot of pain meds and the combination of that with my exhaustion made it very difficult to focus. The NICU nurses were great at explaining everything to us and I was so happy when they told me that I 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 oh so beautiful in my eyes. Her little eyes were still fused together but she could grip our fingers when we would put them in next to her. She did have some improvements in her stats that first day and we got to go to 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 and I was so glad that I did. That evening we went back once more 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, my husband 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 little 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 also off balance and they were suspicious about a brain hemorrhage, but didn’t have confirmation of that at that time. She said that either way, she didn't think that the prognosis was good, so she recommended that I come down. I was terrified, and called my husband 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 started going down and a ton of 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 we 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, so she lived almost exactly 36 hours. 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. She was so tiny, so beautiful, and we could just not get over how perfect she looked. During this time a woman from our church sung the song Amazing Grace and inserted Mikayla’s name…which is where I got the name for my blog. The NILMDTS photographer, 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. It can't possibly make up for not having her with us for another day or our whole lives, but it helps to have those memories until we meet again in Heaven someday.
Melissa's blog is a beautiful tribute to her daughter.  She also is a Heritage Makers consultant and shares her book she made for Mikayla on her blog.  At Christmas time Melissa also has set up a fantastic way of having other's serve in honor of Mikayla, which she call's Mikayla's Stocking.  Stop by Melissa's blog and leave her a comment.  
Thank you Melissa for sharing your sweet Mikayla with us all!

Friday, January 28, 2011

Featured

Would you like to have your blog featured on Honoring Our Angels?  If so...send me an email with a link to your blog/website/project.  I'd love to hear from you and I especially love seeing all the good that is being done by AMAZING people!  Thanks again to everyone that has been willing to share their inspiration, talents, and precious angels with us all.  I have been so touched and inspired by you.  Thank You!

Thursday, January 27, 2011

Abiding Hope Collages & With Love Care Packages


Meet Franchesca, mother to Jenna Belle


On May 5, 2009 we welcomed our firstborn, Jenna Belle, into our lives. God allowed her to grace our lives for 13 beautiful days. My hope is to honor her memory as she has forever changed my world. While I miss her immensely, I have to believe that my greatest loss was and still is her greatest gain. We have since been blessed with baby Joseph, our second miracle. Aside from being a mommy to a baby girl in Heaven and a baby boy at home I have a passion to help other mamas like myself. Jenna opened my eyes to a world of hurt, loss and pain that I would otherwise know nothing about.



Jenna has done such beautiful things through her grief... she is the founder of Abiding Hope Collages and With Love Care Packages.


About Abiding Hope Collages......


Abiding Hope Collages is a memorial site for bereaved parents and families who have had to say goodbye to their children too soon. It was started in the fall of 2009 after I lost my daughter May of that year. After watching so many other women reach out and help babylost families, I desperately wanted to give back some way too. I prayed for a while for something and I believe this is what God has given me to do. I am so thankful to be able to provide this service to babylost parents and plan to do so as long as God will allow me to.
It is tragic that there is a place for memorial sites for children in this world. And there are endless questions that will never be revealed in our lifetime. After experiencing great loss and immense uncertainty, we have to reconcile our uncertainties somewhere. This site was born out of an urgency to hope for things unseen in spite of grief. This hope, this abiding hope, is made possible through the promises in God's Word.

"And now abideth faith, hope, charity, these three..."  
1 Corinthians 13:13a

To abide is to endure without yielding, according to Webster's dictionary.

As babyloss parents, our hopes may all be worded a little differently, but in the end...

We hope that we will see our babies again.
We hope they are in being well taken care of and at peace in their new home.
We hope that we can somehow find rest, peace and joy in this life again.

Because Jesus Christ died on the cross, we can cling to all of these hopes if we have received him, as things that WILL come to pass, and things that can be counted on. Through Him, our hopes become realities. Our pain is ever present, but our hope is not wishful thinking, it is real.

It is something we just have to wait for.

"Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead, To an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you..."
1 Peter 1:3,4



Aren't these collages simply beautiful!  What a precious keepsake.  


Franchesca also runs With Love Care Packages a great service to parents that are coming home with empty arms. 


Welcome

It is our desire at With Hope Care Packages to give parents leaving the hospital with empty arms a tangible reminder of their baby. Leaving the hospital without your baby is the worst feeling in the world. It is our hope to provide care packages to newly bereaved parents which will include grief support information, remembrance gifts, a baby blanket, a sympathy card and much more.

You can see the different care packages available here. We have care packages specific for miscarriage, neonatal loss, poor perinatal diagnosis, SIDS and stillbirth.

You can contact us by clicking here.

I love the idea of these care packages.  Something tangible to hold and to serve as a reminder of your child when you no longer can hold them.  


What else does Franchesca do?  Well just about everything.  She also has a website for her Non-profit Organization, With Love in the NICU, to help parents that are experiencing the NICU with their child.  Franchesca also has her own web design business, Small Bird Studio. Check out all the many wonderfully creative things that Franchesca has done in honor of Jenna Belle.  

Thank you Franchesca for sharing Jenna with us, and thank you for all you do for other bereaved parents!

Tuesday, January 25, 2011

The Flu

I'm sorry for my lack of posting but we have been battling the flu here in our house and now everyone has had it.  We only have 2 now that are still pretty sick and I'm worn out from caring for everyone.  I promise I'll get back in the saddle once my life is a bit more sane.  Until then enjoy this beautiful video put together by someone to honor an angel.........

Wednesday, January 19, 2011

A Father's Grief

I wanted to share with you a great article that touched my heart.  It's written from the male perspective of child loss.  It is so touching how they have formed such a strong bond through their grief.  Just click on the title below to go to the article.


Billy Donovan's Secret Sorrow


Monday, January 17, 2011

Birth Defect Resources

I wanted to post a few resources for those that may have received the devastating news that their unborn/newborn child has a birth defect.  See below several links to website that offer information, support and help.

National Center on Birth Defects and Developmental Disabilities






Thursday, January 13, 2011

What Can I Say To Someone Who Has Lost A Child?

I know that after a loved one has a significant loss so many people struggle for words to say or things to do to let that person know that they are cared for.  Too often people feel like they need to help the bereaved individual "feel better".  There really isn't anything you can do to take away their pain, but letting them know that you are there to listen and support them in they way that THEY need is helpful.  I found another list of "Things You Can Say & Do" at Baby Loss Comfort and thought I would share with you what they recommend.

What were the best things others did for you or said to you after you lost your child?


SOME THINGS YOU CAN SAY (AND DO)

  • "Who can I call for you? Let me help gather loving support around you."
  • "Cry when you need to because I know your tears are helping you grieve."
  • "This child was unique, special and irreplaceable. I know children are not interchangeable and the fact that you can have other children does not lessen the grief of losing this one."
  • "Talk to me, share your thoughts, feelings and memories of your baby. I know that you haven't forgotten your baby or your pain just because I'm afraid to mention it."
  • "When you've decided what you want to do with your baby's clothes, toys and furniture, I'll help you sort through it all. And if you need to cry, I'll bring the tissues."
  • "Let me take your baby's sibling to the park, read a story or tickle their toes. I know you don't feel like laughing or playing right now."
  • "I'm going to run errands now—is there anything I can pick up or do for you?
  • "Be patient with yourself and give yourself time to heal."
  • "There is no particular way you 'should' feel or things you 'should' do. There are no rules about how grieving should go."
  • "Don't worry about your baby's brothers and sisters at the funeral—I'll watch them and give them extra love and attention."
  • "I'll be over to pick up your baby's brother or sister to take them to school, Grandma's house, or to their soccer game—I'll even stay and cheer them on! And I'll listen to their feelings about losing a baby brother or sister. They need to know their world is safe even though yours doesn't feel that way right now."
  • "I'll help fill out medical forms, walk the dog, pay bills or answer the phone. I understand that it's hard to deal with the mundane details of life right now."
  • "I know it seems like a long time, but you don't have to 'get over' the loss of your baby on any time table. You'll feel better when you do and I'll still be here."
  • "Tell me more about your pregnancy and your baby...I'm interested and I'm not tired of hearing the same stories. I know sometimes you need to keep going over those events until they seem real and more tolerable."
  • "Wasn't it a year ago that you lost your baby? How about we go for a walk or out to lunch. And I'll remember this day next year and the year after."
  • "How are you doing today? If you don't feel like answering the phone, I'll just leave a message to let you know that I love you and was thinking about you. I'm sure you'll return my call when you feel up to it."
  • "I've found a list of local support groups in your community, synagogue or church and I'll take you if you'd like to go."
  • "I understand if you're having a hard time being my friend when I have a new baby and you've lost yours. I love you and I'll be here when you're ready."
  • "Don't feel guilty because you laughed today."
  • "I'm here. Call me any time of the day or night. I'll cry with you, I'll listen to you and I'll even laugh with you. I'll always have tissues."

Wednesday, January 12, 2011

I wanted to share another great article from griefcounselor.org which does a great job explaining grief from different physical and emotional aspects.

The Grief Experience

Grief is the natural, healthy, spontaneous, unlearned, normal, emotional, healing process that occurs after a significant loss. Grief is experienced uniquely by each of us, and is often experienced in waves, with emotions, thinking, physical, and social responses coming and going in terms of the intensity, duration, and order of our reactions to the loss. In addition there are many other variables that can affect our grief reaction.

Emotional Components of loss can include:
  • Shock, numbness, feeling of unreality
  • Helplessness
  • Vulnerability
  • Fearfulness
  • Sadness
  • Anger, irritability
  • Emptiness, loneliness
  • Guilt
  • Carelessness, harming oneself or others in any way
  • Outbursts, euphoria
Cognitive Components of loss can include:
  • Slowed and/or disorganized thinking
  • Confusion, aimlessness, difficulty concentrating
  • Preoccupation, rumination
  • Unaffected, no thoughts at all about the person or the circumstances
  • Dreams
  • Decreased self-esteem
  • Altered perceptions, sensing the presence of the deceased person
Physical Components of loss can include:
  • Fatigue, sleep disturbance
  • Decreased or increased appetite
  • Physical distress, nausea
  • Anxiety, hypo- or hyperactivity
  • Greater susceptibility to illness
Social Components of loss can include:
  • Being unaware of others' needs
  • Passivity
  • Withdrawing from or avoiding others
  • Decreased work productivity
  • Loss of interest in usual pleasures, including hobbies, relationships and/or sex
  • Strained relationships, differences in grieving needs between self and others
Variables that can affect your grief reaction:
  • Your own history of past losses, through deaths, divorce, relocation, lost dreams, phase of life changes. Violations of one's safety (accidents, fire, personal trauma, world crises), or health changes
  • Your current personal and situational stressors
  • Your personal beliefs in a faith tradition or spiritual practice
  • Your cultural and family expectations about loss
  • If the loss is anticipated or unanticipated
  • If the loss is marked by traumatic events
  • The degree to which closure with the person was possible
  • A "loss out of season," for the person who has died or for you
  • Your ability to share the loss with others
  • Your coping style and use of stress management resources
  • Working through past hurts and forgiveness issues
  • Finding a way to make meaning of the loss
Grieving is a process. There is no correct timetable for the waves and reactions of grief. Yet, as you work through your grief, you can regain your balance, develop a sense of completeness, and re-engage in life in a deeper way. Your self-awareness in the process can be a personal journey and also one you may wish to share with others, through family, friendship, and work circles, or through professional
and community resources.

Tuesday, January 11, 2011

In the beginning there was Genesis...

I'd love for you to meet Tiffany, the author of In The Beginning There Was Genesis & Names on the Sidewalk.  



She started her blogs in honor of her daughter Genesis.  I was so touched by their story.. it was heartbreaking and candid.  You can read Genesis & Tiffany's full story here.  Here is a small part of their story below...

Around 18 weeks the time came to do the AFP test. My husband told me I should decline the test since we were young (23 & 24) and there was no history of any illness or anything in either of our families. I knew he was right but something told me to do the test anyway. I went to the lab and they took my blood. As I was sitting in the waiting room I was feeling very confident that this was just going to be a routine testing and they were going to tell me everything was great just as they had so far through my pregnancy. The lady who took my blood was having a casual conversation with me:

Her: How far along are you?
Me: About 18 weeks
Her: Is this your first?
Me: Yes.
Her: You know, no matter the outcome of this test, you are blessed to have this baby.

I was a little surprised that she said that last statement to me. I just smiled and nodded and after she took my blood I went on with my day. I had no idea what she may be referring to. I was the young and blissfully ignorant pregnant lady we all see walking around on cloud 9. But perhaps I should have paid more attention to this indirect warning as it turned out to be a sign of things to come.

A week later I got a call from my doctor telling me that the results were positive for the AFP test. I asked what this meant. She went on to explain to me about spina bifida and the possibility that was the problem. She also told me that it could be something or nothing. But she wanted me to go to a specialist that could do a 4d ultrasound to either confirm a problem or put me in the clear. There were no available appointments for 2 weeks. So for the next two weeks I carried a heavy heart thinking my child was very ill, but that I could do it and no matter what I would not terminate my baby. The doctor never mentioned my baby could die.

Finally the big day of my appointment arrived and both my mother and my husband came to this appointment. I was incredibly nervous. I remember sitting in the waiting room full of pregnant women just wondering about the possibilities of what could happen. I sat there and watched pregnant women get called in before me... all of them. Even the ones that came in after me. They saved me for last. I was scared about this. Terrified actually. They finally called my name and I had to have a chat with a genetic counselor first. She went over family history on both my side and my husband's side of the family and I don't really recall what else she talked about. I do remember the last sentence that she spoke though, "Don't be surprised of the demise of your baby." That one sentence changed everything for me. Demise? You mean my baby could actually die? Or already be dead? I only thought that my baby may be sick. This almost put me in a panic attack. They finally had me go into the ultrasound room and the specialist came in. I tried to get my mind off things and asked him if we could find out what we were having since I was well into my 20th week. He said yes and that gave me something to look forward to. As soon as he put the ultrasound machine on my belly I saw my baby. I saw the heart beating and I saw the baby move. I was relieved my baby was fine. Or so I thought. He scanned for a few minutes and was quiet the whole time. Finally he put the ultrasound machine down and said, "Did your OB talk to you about Anencephaly?" I had never heard that term before and I said no. He went on to explain it to me. The sentence that stood out to me the most was, "the baby developed without a brain." At that very moment he didn't need to say anymore. I knew that you can't live without a brain. I knew it was the worst news I could get and I started crying. I felt this big. My mom and husband didn't quite get it yet. Then came the horrible phrase those doctors keep saying. "It's a condition that is not compatible with life." Then silence. My mom started crying and hugging me saying "I'm sorry. I'm sorry. I'm sorry..." over and over again to me. I think my husband was in a state of shock because he wasn't saying anything. He wasn't doing anything. Not crying. Not talking. Nothing. Just standing there. The specialist and the assistant with him left us in the room for a few minutes for us to grasp what just happened. My mom and I just cried in each others arms. 

  
I love that Tiffany is now giving back to other loss parents with Names on the Sidewalk.  


You can request to have your angels name written in colorful chalk and have a picture emailed to you.  To make a request and find out more information...click here.

Thanks Tiffany for all that you do to give back to others and for sharing Genesis with us!

Monday, January 10, 2011

Molly Bears


I'm honored to spotlight today Molly Bears!  It warms my heart to find yet another group of people doing so much to offer comfort to those families that have lost infants.  I'd like to introduce you to the team of Molly Bears....


Molly Bears are "An Angel Baby's Cuddle Sent To a Mommy In Need".  I love how these bears are made with such love and they are weighted to weigh the same as your angel baby.  I just love that!

About Molly Bears......

We lost our angel, Molly Christine at 34 weeks, on May 30th 2010.   I had not felt our active girl all day on the 29th. That night I went to the hospital to check and make sure Molly was alright. We were told that our beautiful girl no longer had a heartbeat. She died from a tight true knot in her cord. Devastated would not even begin to describe how we felt.
I was given a weighted teddy bear from a dear friend from high school. This bear weighed three pounds.  In an effort to have a bear that weighed the same as Molly, I bought a shell and a package of rice. In the middle of the produce isle, I carefully weighed rice, fluff and the shell.  I am sure people thought I was crazy, but I did not care.  I went home and with my children and husband, we created the very first Molly Bear.  For the first time in weeks, I was able to sleep holding her.  It was then that I knew I had to find a way to help other angel mommies.
I started making these bears for other angel mommies that I had become close to in several support groups.  I had committed to one bear per paycheck, and soon I had requests and a desire to make more.  I went to my sister, Amanda, and I was venting about what I wanted and that I wasn’t sure how to make it happen. In a few hours she called me back with a plan, and within a week we jumped in - feet first.
It has only been four months since we started this adventure. We have been featured on the local news. We have over 1,000 people that like our Facebook page.  We have received over 550 orders, and have created more than 150 bears. We have sent bears to 7 countries and 42 states.  Often times we are in awe at the amount of people who say Molly’s name.  Words do not describe how humbled we are.  This road has been hard and continues to be long, but we travel one day at a time and we are in wonderful company.
Thank you for visiting our site.  Please fill out an order form, sign our guest book, and if you are able, please make a donation so that we can continue our mission.

There is a long waiting list for a Molly Bear, approximately 3-6 months as of today but you can sign up here to get your own bear.  There isn't any money required, but they urge you to help donate to this wonderful cause so that they can keep making these bears for other grieving families. This is what they have to say on their site....
We started Molly Bears with a pay-it-forward way of thinking.  When I first held my Molly Bear, I had an immediate need to give this to other mommies.  Our hope is that when you first hold your bear, you will immediately have that very same need.

We do not ask that you pay for your bear, rather, we hope that you fall so in love, that you will want to share this comfort with someone else.  Please remember that someone has generously donated so that you are able to hold your very own bear. 

Please donate to Molly Bears Here.
For those that are outside the U.S. there is a fee for international shipping.  Click here to read about that.
To order your Molly Bear and be put on the waiting list click here.

Friday, January 7, 2011

Trisomy 18

I wanted to share information with all of you about a disorder called Trisomy 18.  This disorder has unfortunately taken so many of our precious children back to their Father in Heaven.  Hopefully with continued education and funding we can learn more about ways to prevent Trisomy 18 or help those children with it to live a long life.

Information was taken from the Trisomy 18 Foundation......

What Is Trisomy 18?

Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births.  The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy. 
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community.  A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independantly without assisted caregiving.

How is Trisomy 18 diagnosed?

A lot of prenatal testing is available which may indicate Trisomy 18. It is important to understand that there are two types of testing:screening and diagnostic.
Screening tests indicate a risk, or likelihood that Trisomy 18 is present. These tests take the results of everyone who has had the same testing, and they compare your specific results with that group. Then they use statistics to identify the odds that it is present in your child, based upon the number of times others with the same test results have had children with Trisomy 18 in the past.
This is much the same way that weather is forecast, by saying there is a 20% chance of rain because 20% of the time, when the conditions were the same, it has rained. Just as the weather forecast is not completely accurate, screening tests are not a diagnosis but only an indication that the risk is higher than normal.
The following are screening tests, which CANNOT diagnose Trisomy 18 (click on the link for detailed information about the test):
AFP (also known as triple screen, quad screen, maternal serum screening)
Ultrasound (standard, level II, level III, 3D)
Diagnostic tests check actual cells and can determine if Trisomy 18 is actually present. This is a diagnosis, since the condition has actually been found in the cells.
The following are diagnostic tests, which CAN diagnose Trisomy 18. (click on the link for detailed information about the test)
CVS (Chorionic Villi Sampling)
Amnio (Amniocentesis, FISH test)
Knowing which test was used is important in deciding what your next steps are.

Making Decisions After a Prenatal Diagnosis

This is a very difficult time, and unfortunately there is no magic choice that will make this experience easier.

Take your time and learn as much as you can so you can make informed decisions.


If you have been diagnosed while you are pregnant:If you have positive results on a screening test we recommend that you discuss this with your doctor and a genetic counselor.   Your medical providers will talk about diagnostic testing options with you. The decision about whether to have these tests is up to you.  If a diagnostic test comes back positive for Trisomy18, the results should be discussed with experts, including a medical geneticist, a genetic counselor, as well as your own doctor. 
Learn More: Expecting a Child 
If your child was diagnosed after birth:If your child was diagnosed after birth, your child will be receiving specialized care from the hospital and his or her doctors will be helping you learn how to best care for your child . 
Learn More: Caring for a Child


After the Diagnosis:
  • Take your time before making critical decisions
  • Ask questions and ask for explanations of anything you don’t understand
  • Know as much as you can; make sure the information is current
  • Read other parents’ stories
  • Be informed about medical conditions
  • Know it’s okay to grieve the loss of the child you envisioned
  • Share with other parents in our Online Support Community
  • Know that every pregnancy and every child is different
  • Find medical professionals who are on your side
  • Find support

Remember, whatever happens, you are still a parent!


Interested in making a donation to the Trisomy 18 Foundation? You can do so here.





Thursday, January 6, 2011

What Does it Mean to Move On?

Yet another great article by Storknet.com  What does it mean to you to move on?  You can read the article directly or read it below...


Question of the Month
What does it mean to move on? Does this mean I have to forget about my baby?





Ann DouglasFrom Ann Douglas . . .
Moving on does not mean forgetting about your baby. It means rebuilding your life in a way that acknowledges and honors the fact of your baby's life and death.
Some parents worry that they are somehow being disloyal to their baby if they find themselves experiencing joy in their lives again. This is not the case. What you are experiencing is simply the triumph of the human spirit over adversity -- a powerful force that allows us to go on at times when we swore we couldn't.
You will find ways of memorializing your baby and special ways of honoring your baby's memory through your day-to-day life. You need not worry that you will forget your baby. That could never happen. If you talk to 80 year old women who experienced the death of a baby a good half-century ago, they can still tell you very specific details about the circumstances that led to their baby's death.
Life goes on, but parents never forget.
Ann Douglas

Marilyn HeavilinMarilyn Heavilin
To me, moving on means learning to live a productive life, a life that includes my loss. It is impossible to forget about your baby, but life will continue even though your baby died. Moving on means learning to live with a new normal which means learning to live without your baby. Life will be very different, but it can be good. Moving on for me means living with the fact that I have given birth to five children, but I have two who are living. Moving on means I am willing to share my experience with others. Moving on means there finally came a day when my first thought was not "Three of your children are dead." I am not the same person I was before my children lived and died, but I am a nice person, a kind person, a compassionate person, and a person who thinks of all three of my boys every day. My children give me energy to face each day without them. To me, that is moving on.
Much love,
Marilyn Heavilin

Sherokee IlseSherokee Ilse
Moving on - whose term is that anyway? It can imply "putting the past behind" and in my opinion isn't even a phrase to have in one's vocabulary. Ok, "moving on with life" could work as long as it is clear that we are integrating our loved one into our lives and learning to live without their daily presence, while we keep them alive in our hearts forever. The pressure from others and ourselves is intense. The desire to move on may even be great. But the way to move through life after a painful loss is to grieve and remember. In time then, when much of the hard work is behind, the remembering and grieving can soften and lessen, but it never fully goes away. When we love someone so deeply, it is not wise or possible to really forget them and "move on" to other things while ignoring their effect on our lives. So follow your heart, seek your "new normal", but know that you may and will find times for tears, smiles, sadness and joy the rest of your life as you hold your precious one close to you always.
Still 'moving on and through' with my life,
Sherokee Ilse
PS Even after 20+ years of living since my three losses I have great days, fine days and sad days. I carry my three babies with me; they are held close in my heart, and I look at life differently because of them. Their gifts overwhelm me and I wonder how it would have been with them here. Mostly I have much to be thankful for and don't dwell on their loss anymore, but I make a commitment to NEVER forget them. I am the mother, how could I?

Laura Randolph
"Moving on" takes place in both subtle and obvious ways. To illustrate this I will share a little of what moving on has meant to me. I will never forget waking up with a smile on my face several months after our son's death. To me that smile was a glimmer of hope that I would be able to be happy again. I had a similar feeling when, months after Brycen's death, I realized I had not cried for a day or two. At some point I also noticed sorrow no longer consumed my life and that the thought of Brycen was beginning to bring gentle joy to my heart instead of searing pain and grief. Without even meaning to, I had begun to move forward and find hope, happiness and meaning in life after the death of my first born.
Other parts of moving on were deliberate for me and came in stages. Some of these steps were spur of the moment decisions that just felt right, others took days or weeks for me to decide on and prepare for emotionally. Deciding to have another baby was one step. Although at the time I was still in the deep throes of early grief, having another baby was a decision to move forward with my life. Seven or eight months after Brycen's death I decided to cut down the black ribbons I had tied around the mailbox and outside light posts the week after he died. I cried heavy tears of sorrow while I cut the ribbons, weathered and torn from the elements, but I knew it was time for them to come down. Another step came a few weeks after our daughter's birth when I tearfully packed away most of Brycen's things from the nursery and added our newborn daughter's clothes, toys and diapers in place of our son's.
The process of moving on is not clear-cut and is certainly not short or painless. Even now, over two and a half years after our son's death, there are moments I realize I am still in the process of moving on. One thing is certain though, moving on does not mean you have to forget about your baby. Remembering and honoring are both healthy and vital aspects of coming to terms with loss. Moving on does not mean we have to stop doing either of these. The very fact that we continue to live our lives despite knowing such sorrow is a start. But, to laugh, love and make plans for the future while at the same time remembering and honoring our babies is to me the pure essence of moving on.
I wish you peace, light and love on your journey as you discover what moving on will mean to you.
Laura Randolph

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