Memorial Day Traditions

I love Memorial Day weekend, and the opportunity we have to honor our veterans.  We have a family tradition on Memorial day to visit all of the graves of our family members that have passed away, and talk about their lives and the impact they have had on each one of us.  Some of them lived many years, others, only moments, however, each person has had an influence and has blessed our lives.  May this Memorial Day weekend, be one of healing, of peace and gratitude for the opportunity to love those that are gone.  

October 15th

Pregnancy and Infant Loss Remembrance Day

Around the world at 7pm in all time zones, we will be lighting candles for those the precious babies that have been lost in pregnancy or in infancy.  Join us in honoring their memory by creating a "wave of light" this Tuesday!

Learn more about October 15th.com  

24 Hour Grief Counseling

I discovered that First Candle offers 24/7 grief counseling for anyone struggling with the loss of a baby!  I've listed their contact information below.  

CALL US TOLL-FREE AT

1-800-221-7437

GRIEF COUNSELORS AVAILABLE 24/7

The Lord is my light

I was recently asked how I have been able to handle the loss of our daughter.  My answer is simple......

my faith.

I believe that families are eternal and I will one day hold my daughter in my arms again.

I recently took this picture in Oregon and to me it embodies faith.  

What has carried you?

If you would like a copy of the picture with your angel's name where my copyright symbol is located please email me by 6/17/12.  I will personalize a copy for you and place your angel's name on the print for free.  I will only be able to take requests until the listed date and you must have it personalized.  Print sizes may vary.  I've successfully printed a 5x7 but it may differ based on your printing lab.  Realize that coloring may vary based on your monitor or your printing lab.  Be aware, the file is large.

Much Love,

Monica 

Advice

I saw this article on Grief Digest Magazine (online) and wanted to share it.  It's a great resource for articles and information from the bereavement community.  You can click on the link to take you directly to the article or read it below.


ADVICE
February 23, 2012

By Andrea Gambill

Advice is like breath; everyone has some, but sometimes it isn’t pleasant!

…and, it’s pretty much worth what you pay for it—most of the time.

Probably nobody gets as much unsolicited advice as the bereaved. It comes in like an avalanche—especially in the early days of grief. What always amazes me is how firm-with-confidence it is when it comes from those who have never had a similar experience. It is almost always liberally spiced with “you should…,” or “you shouldn’t…”; “you need to…,” or “you must never….” Or even, “I bet you wish…”  Then there’s the ubiquitous, “If I were you…” And the virtually unforgivable, “Why didn’t you…?” Unwelcome advice is like sandpaper on the soul. It hurts, and it does no good at all.

It’s almost always well intended, but it’s usually born out of frustration on the part of the donor. Our wannabe-comforters are completely baffled by us, and they are overwhelmed by our pain. If that sounds a bit too “forgiving,” try to remember back to before you were bereaved and how you felt when you encountered someone who had just experienced a devastating loss. I know I’d love to get back some of the words that spilled out of my never-to-be-silent mouth!

I know a lady who never has a clue. If I say I have a headache, she will say, “Why don’t you take an aspirin?” I want to reply (loudly), “Gee, I wish I’d thought of that!” People don’t mean to be stupid, but they are often flailing around in the deep end of the pool when they can’t swim. They need some education—given graciously and with patience—because, “a teaspoon of sugar helps the medicine go down…,” But “teaching” and exercising patience can be tall orders for the wounded who are already suffering a pain that is beyond describing!

But, wait a minute! It’s not all bad news. Sometimes, there is great advice swirling around out there if we can just let our hearts be quiet for a minute and learn how to sift and sort. There are still souls who are tender-hearted , compassionate and wise beyond the obvious. Before we throw the baby out with the bath water, let’s do a little testing. Let’s consider who is giving the advice. Is it from someone we have always considered wise and trustworthy? Is it someone we truly care about—perhaps even admire? Is the counsel coming from the heart or the head of this person? Does s/he really genuinely care, or is it just an attempt to impress you with their great wisdom? Is this someone who has your future and your soul at the top of their prayer list, or is it someone who wants to exert power and control (even if they don’t realize their own motive)?

In other words, let’s take a deep breath and try to be discerning. After all, we can’t lose anything—except maybe something (or someone) we really didn’t need anyway. We may be bereaved and in deep pain, but we have not lost our own prerogative to choose our own paths and decisions carefully.

“Caring is comforting, but advice may not be. If caring is coming from a deep and sincere place in the heart, it can’t fail. If it’s just an obligatory duty, or a quest for power and control, it can’t succeed.”

This is only one of the reasons support groups and grief literature (like Grief Digest) can be so helpful. Since advice is an issue that bereaved people have all endured, many different responses to it have been learned and shared. Maybe each of us can edit some of those responses with small personal revisions that will help. You get the idea, “Two heads are better than one.”

By Andrea Gambill 

New Links for Calvin's Cupcakes

I love Calvin's Cupcakes!  If you haven't visited Crystal lately you should.  She recently sent me a few updated links to her websites and I wanted to pass them along to you.  Stop by and say hi!

• Kisses for Calvin – Calvin’s memorial site
• These Fragments, I Love – Crystal’s blog
• Calvin’s Canvas – Louie’s website

When You Lose a Baby

I saw this article, When you lose a baby, written by Franchesca Cox at Small Bird Studios and just had to share.  Most of it rings true for me and I'm sure it will for you too.  It has been over 3 years since our daughter was born it's amazing how she is "overlooked" by so many.  No one brings her name up anymore.  Grief transforms over time.

Calypso's Ocean

Today I'm honored to spotlight another amazing angel and angel mom, Calypso and her mom Melissa.  Melissa is the charity director of Calypso's Ocean, a neonatal loss remembrance page and charitable donation organization.  Melissa also blogs at Hiding Scars in My Yarn: Surviving and Crafting my Way Through Grief.  Melissa does so much to honor her precious Calypso through service to others I am honored to spotlight her here on Honoring Our Angels.  Melissa has written a guest post sharing her story of Calypso and I am honored to post their story....

My Heart is the Heart of the Ocean

At 9 weeks I started bleeding and they swore up and down I was losing the baby..... I didn't. We breezed through the next few weeks easily until 18 weeks. I had been spotting. Went in for an u/s. Calypso's amniotic fluid was at 1.5 (4.5 is critical) the u/s lady kept asking me if I had been leaking. I told her no, no I hadn't. They scheduled me for a recheck in 2 weeks saying she probably just needed to pee.

At 20 weeks I saw them again. The u/s tech was very very quiet and told me that the baby still had no fluid and that my placenta looked 'funny' like it had 'pits' in it. She went to get my Dr. He came in looking teary eyed and told me I was at very very high risk for interuterine fetal demise and having a stillborn baby. They referred me to a high risk Dr. 50 minutes away in Indianapolis who I saw the following Monday.

I saw the High Risk Dr. at 21 weeks 2 days. He told me the baby looked ok and we were in a wait and see stage and I'd have every 2 week u/s. I never made it to my next appointment. On May 2nd at 23 weeks 5 days I woke up with blood soaking through my pants into my bed and freaked out. I called 911 and they took me away to our local hospital. They found Calypso's heartbeat and transferred me up to IU Hospital in Indianapolis via ambulance.

There they diagnosed me as a placental abruption case. We had to sign papers telling them that if Calypso was born super early we wanted aggressive treatments to save her. I spent 6 weeks in the hospital bleeding off and on. When I hit 29 weeks I was so excited, if I had my baby she would live! I was so freaking happy. The nurses even let me put up a little sign on my door that said 29 weeks

On June 14th at 1:30 am I was 6 cm and they gave me an epidural. At 3 am I called my friend. At 3:15 I was feeling weird and the Dr's. came in to check me. I told her I'd call her back. Calypso was born 5 minutes later in one push. She came out sunny side up and had her eyes open (I wish so badly I had seen her eyes, I never got to see them) she even tried to cry and sounded like a baby lamb. I wish I'd had dh record her birth too. She was 3 lbs 1.9 oz and 13 inches long. They whisked her away to try and get her stable.

I got up about an hour later to go pee and started hemorrhaging. The Dr. started my iv with pitocin (I got 2 bags) and they put cyotec up my bum and he MANUALLY yanked clots out of my uterus while shoving on my stomach. Finally they got everything under control.

At 5:30 am they had Calypso stable enough to transfer her to Riley and I got to meet her briefly before they whisked her away to Riley which was attached to IU through a tunnel that goes under the road.

Calypso was doing good, she had some small problems but was doing great. Her kidneys didn't function 100% but the doctors thought that might work itself out. So they monitored her intake and outtake. They weaned her off the the Oscillatory Ventilator and onto a regular vent. They started her on breast milk via a tube up her nose. One time we were in the NICU and the nurses asked if we wanted to watch them flip her over. OMG!! That is the creepiest thing EVER!! It took two nurses and they just flopped her over like a potato!! And she did not like that at all!! She cracked open an eye and GLOWERED at those ladies. She was all WTF you guys!! We couldn't go up to the NICU often. I had a 3 year old and a 17 month old at home and no babysitter so we went every other day after DH got off work, this is something that people have called me heartless and a bitch for since she died. I should have been there NO MATTER WHAT! What was I supposed to do? Leave my young children at home alone?!?! I was able to spend one night at the hospital with her and I loved it.

It shocks me sometimes at how much influence that tiny little princess had on my life. I would have sold my soul to Satan himself for her. I loved to touch her little feet and hands. She was amazing and she had so much dark black hair! They wouldn't let me hold her. I wish I had pushed for that and made them let me. They kept telling me 'when she's better'

Then it happened, the unthinkable and most dreaded word that any preemie parent will ever hear NEC (Necrotizing Enterocolitis) it's a severe intestinal infection in preemies. It kills off the lining of the small intestines which causes it to become nothing but dead tissue. It causes all kinds of problems, including renal failure. I was still so freaking hopeful! Everyone kept promising me she'd come home. I admit the whole time she was there I kept thinking maybe maybe she'll get to come home with me but I wasn't 100% for sure and hoping on it.

Here's 2 of my journal entries leading up to her death.

WEDNESDAY, JULY 04, 2007 02:12 AM, CDT

A letter to God I wrote today

Dear God,

I know everything you do is for a purpose. And I KNOW it in my head but I can't for the life of me understand in my heart WHY my baby girl has to go through this stuff. She's so small but has already had stuff done to her that most adults haven't had done to them.

I realize that I may not be able to see her grow to adult hood but I beg you with EVERYTHING in me to let her come home. Even if it's just for a while. I want her to come home and be with her sisters and with me.

I want to hold her and rock her and actually be able to kiss her head. I want to sing to her and know she hears me. I want to see her eyes. I haven't even been able to do that. I want to be able to put her in clothes that WE bought her. And take her on a car ride and a walk through the park.

I want her to go to MOPS with me and the girls and smile at me. I want her to sleep in her own crib and use the diapers we have for her.

Please Lord I don't care if she's on oxygen or a vent or has been trached. I don't care if she's on a feeding tube or what. I just want her home. I want to hold her in my arms and tell her how much I love her. Please God you've done things so much more complicated then this surely it's not an unreasonable request?

In Jesus Name

Amen

and then on the day before she went to heaven I wrote this one

FRIDAY, JULY 06, 2007 06:11 PM, CDT

Whoever says compassion and is dead and humanity is selfish needs to step back and re-evaluate their lives. The amount of support we've have for our baby girl is so staggering it brings tears to my eyes.

The fact that these people online who've never met me or my daughter are supporting her and praying for her without ceasing. My family members and friends who've never met her. It makes my heart swell with gratitude and love to know so many people are so involved with my angels life story.

We sat down and met with a team of Dr.'s today. They told us her kidneys still aren't working BUT that her NEC is almost GONE!!!! They injected die into her stomach and watched it move through her body!!! Now we are simply waiting to see if her Kidney's kick in. Dr Engles said that he's seen babies in Kidney Failure up to 4 weeks and then BOOM one day they start peeing and don't stop again. He also said the fact that she had a few days of pee and then nothing also could mean that they are Starting to function because sometimes they do that start and stop.

Baby girl is still in Critical Condition of course but there is hope. He said if she starts acting like things are getting to hard on her they can try a medicine or try dialysis. This could be risky since her stomach and intestines ARE still healing BUT if she starts going down hill we'll do anything possible to help her.

Right now they are monitoring her fluid, electrolytes, and all that stuff. As well as her blood pressure and blood gasses. All those at the moment are stable.

Over all we're playing the waiting game. Wait and see if she can do this or wait till God takes her home to be with him.

So Kind of the same news we already had with the one exception about the NEC being gone.

I know the news will spread quickly and wanted to remind you all of this. Humanity and Compassion are NEVER NEVER gone. Sometimes there is just so much junk to wade through that the compassion and caring gets over looked. Please take a moment out of your day to smile at someone and give them a bit of hope in the world. And Thank you All for giving us and our earthly angel this hope that the world hasn't gone to hell in a hand basket.

The morning of the 7th the Nicu called me at noon and told me she was hurting bad and fighting the vents and her bp and oxygen levels weren't doing well. and we needed to get up there asap. I started bawling. I knew what was happening. The day before we'd gone to see Calypso and then I'd had a doctors appointment and then Raeden did too and I was tired and DH went up to say Goodbye to Calypso and I didn't. On the way home I freaked out and told him if something happened I would hate myself for not telling her bye. Oh God I never told her bye and the next day she died.

We were 10 minutes out of Indianapolis nearing Riley when the NICU doctor called again, you could tell from his voice things were bad. He said to get the whole family up there. My husband hadn't come up to the hospital with us. He had wanted to come later in the day. He kept telling me she'd be fine and they were over reacting. So I called him and told him to get up there NOW. I then called my mom and in hindsight I wish I hadn't invited so many people up there.

At the hospital I practically ran to the NICU and there was THE sign, that horrible horrible sign 'The NICU is Temporarily Closed' For any NICU mom they KNEW what this meant. A baby was passing or had passed away. I knew it was my baby. My sweet little girl. I went in to see my princess as we waited for DH to get up there. I sang to her OUR lullaby. JUST ours Hine, E Hine.

Dh got there and we talked to the doctors. They told us her oxygen SATS had been below 60 for too long. There was too much fluid on her lungs and while they could TRY another procedure there was almost no chance of it working. So we made the decision and we took her off the vent. And I was a wreck. They didn't even ask me NOW if I wanted to hold her, I had to beg them first. They did let my girls into the NICU though so that was wonderful.

Here's my journal entry from that day

SATURDAY, JULY 07, 2007 06:18 PM, CDT

Calypso Paikea Rhyder got her angel wings today 7/7/07.

People say 777 is heaven's number and today I truly believe that.

As we were on our way to the NICU this morning about 10 minutes outside of Indy the dr called and told us that her oxygen sats had been under 60 for 4 hours and we needed to hurry because we were loosing her.

When we got there I called my parents and we went in to see her and talked to the doctors. I could tell just by looking at her it was obvious she was already almost gone. The doctors said they could try another procedure that had little chance of working or take her off the vent. We chose to let her go. The hardest thing we've ever done in our life.

But doing the right thing is not always easy. As I held my angel today they baptized her and my girls got to come in and to see her. And my mom and my mil held her. Then we went to the other room and they were taking her off the vent and were going to bring her to us.

Oh Lord she fought! Even without the ventilator in my arms I could hear her gurgling and trying to breathe and I wanted to DIE. I was killing my baby and letting her die. My angel went to heaven in a room surrounded by my family and dh's family. We don't have an exact time of death because she died in our arms.

They dressed her in an outfit and wrapped her in a blanket and brought her back to us again to love on her. Before we left they gave us the clothes and the blanket she had been wearing as well as a lot of mementos. They did foot prints and hand prints and casts of her hands and feet which they will mail to us. We got a baptism certificate as well as a large teddy bear with a card that reads

'I know that this little teddy bear could never heal your broken heart or replace your child but, it will give you something to hold on to.

These teddy bears were given in memory of children that were called back to Heaven far too soon.

This teddy bear was given in memory of Scottie Michael Mullenix with love from his family'

And it has a picture of an angel on it. We also got every blanket and hat and anything that Calypso had used in the NICU.

My soul is half missing and it will never be whole until the day I am reunited with my princess.

After they took her off the vent they brought her to me to die. The room was so full of people and was a small room. I had no where to lay her down, no where to just snuggle her. I wish I'd kicked everyone out but I wasn't thinking. I held her for an hour or so and none of the nurses came to help me clean her up. No one came to bring her clothes. She was in a diaper and blanket and there was blood. Oh God I never realized how traumatic this experience was to me until two years after her death and finding out how well some people had it. I'd not pumped since 9 am and it was now 3:30 pm and as my daughter lay in my arms gasping for air I had a let down. Oh fucking hell, that was agony, it was embarrassing and it HURT.

My mother in law went down to the gift shop and bought an outfit that was too big for my peanut. The hospital gave us a list of funeral homes to call and at that time the nurses go 'Oh we have clothes but this works' and they took her AWAY to clean her and bathe her! No one mentioned I could do it and dress her, no one offered. I didn't know I was allowed.

They kept her away for 30 minutes. I got to spend another hour or so with her. All the family wanted to leave. I didn't drive and I had no idea what to do. I couldn't stay there and I had no where to lay her. The nurses kept popping in and I was so uncomfortable. We had to call the funeral home and arrange them to come pick up our baby. Ext so we gave her to the nurses who said they'd take photos for us and send them to us. Which they never did, no photos.

Her story is mostly over now. We had her cremated and had a memorial ceremony on July 13, 2007. The day to make her arrangements came and I had to go to the funeral home alone, so my mom came with me. The funeral home lady was amazing she told me how beautiful Calypso was and my mom kept asking if I was sure I wanted her cremated and at the time I was. The funeral home lady asked me if I wanted to come down and see Calypso in the morgue and my mom pressured me to say no. Only recently did I realize that at that point she would have had no swelling, I would have been able to see her features with no tubes and no swelling and I said no. I'm a fucking IDIOT and I hate myself for it.

I regret not having a funeral funeral. On Calypso's 2nd birthday in 2009 we had her ashes interred in an urn vault and buried in the cement foundation of her new headstone.

There are so many things I wish I'd done differently. There's so many things I wish I'd known and that I wish I'd been told and offered. We have no full body photos of Calypso in clothes, none of that.

I miss her.

Calypso's finale chapter happened on April 15, 2011 almost 4 years after my Ocean girl was born and died. The rest of her ashes were scattered into the sea off of Waiheke Island New Zealand. New Zealand where her middle name Paikea came from. Like the song I sang to her while she lived

'I can still hear your voice on the trade winds

I can still taste your tears on the foam

But the lure of the tide that I'm feeling inside

Will not rest till my heart finds its home'

And that is her story

Thank You Melissa for sharing your sweet Calypso with us!  

Melissa Lane
Charity Director of Calypso's Ocean
http://www.calypsosocean.com 
My blog
http://scarsinmyyarn.blogspot.com/

In This Storm

Today I'm excited to spotlight another blog entitled, In This Storm.  Heather is the author of In This Storm and mother to Madelyn.

This is Madelyn's Story....

Our family’s story began on May 8, 2004, the day Nathan and I promised to love and cherish each other for the rest of our lives. As I made my vows to him, I hadn’t the faintest idea how our lives would change just over five years later through the birth of our daughter, Madelyn. In fact, neither of us envisioned ourselves as the “having babies” type. Our plan was to work hard, retire early, and enjoy the extra money we wouldn’t be spending on things like daycare, diapers, and college funds.

A few years into our marriage, I began to reconsider my stance against having children. Some of our friends started having babies, and I wanted that sweetness in my own life. Nathan was still no where near ready to even consider the idea of children, but he did let me get a cat. I enjoyed the new, furry member of our family, but she did little to squelch the desire that had sprouted in my heart for a child.

In late August 2008, I thought for a few brief days my wish had come true in the form of a surprise. My usually very predictable menstrual cycle was late, so I decided to take a pregnancy test. To my surprise a second line, albeit faint, appeared. I went straight to Google to see what I could find on faint lines, and everything I read said a line was a line. I was scared to tell Nathan as I knew this wasn’t something we had planned, but I was beyond thrilled.

That dream all too soon slipped from my fingers the next morning when the test was no longer positive. Several tests later, I came to terms with the fact that I wasn’t pregnant. I still don’t know if I ever was – I later discovered that the brand of tests I was using is notorious for making people think they are pregnant. I’ve even read stories of men getting positive tests with this brand!

Regardless of what happened, I was crushed. Yet something positive was born of the experience: spending a day thinking we were going to be parents changed both of us. Nathan realized that he wanted to have a baby after all, and we decided we would start trying to do just that after I finished my Masters degree in December 2009.

In January 2009, our plans were once again interrupted, as I discovered I was pregnant. While it was a surprise, we had been careless with prevention, so we weren’t nearly as shocked as we had been five months before. My previous experience made me cautious: I tested again every single day, multiple times a day, for over a week. Yet this time, it was different. Instead of disappearing, the second line got darker with each passing day. I went to the doctor for a blood test, and it showed that I was indeed pregnant with a due date of October 8, 2009.

My first trimester was easy enough, although I was constantly worried about miscarriage, eating the right foods, and following the pregnancy manuals I had collected to give my baby the healthiest start I could. I had an ultrasound at 7 weeks that showed everything was as it should be, but that the baby was measuring as due October 11 instead of October 8. Being an avid cycle charter, I knew this could not be correct. However, ultrasounds can be wrong by up to a week either direction, so no one was concerned except for me.

I had another scan in my 13th week, when my OB was unable to find the heartbeat at my regular appointment. He said that it was still early, but authorized an ultrasound for my peace of mind. Thankfully, the ultrasound immediately showed our baby’s tiny heart beating as it should. Yet, once again, I noticed a few things seemed to be off. This ultrasound was giving us a due date of October 13, meaning our baby was measuring even more behind schedule. I also noticed the “black area” around the baby wasn’t as large as in other ultrasounds I had seen. I later learned this was amniotic fluid. Our baby also did not move even once during the ultrasound. However, none of these things were severe enough to cause anyone concern. I was again reminded that ultrasounds can be wrong by up to a week, and I was told that sometimes babies do sleep during the ultrasound exams. Nothing was said about the amniotic fluid – it must have not been low enough for the doctors to worry.

My next ultrasound, the one that changed my life, was at 19 weeks 5 days, on May 19, 2009. I remember being very nervous the previous night. Even though I was small, I had not been feeling the baby move. We had heard the heartbeat several times via Doppler, so we at least knew she was alive. I was also concerned because at my OB appointment at 16 weeks, my doctor mentioned she was much lower than most babies were at that stage in pregnancy. He wasn’t concerned, but pointed it out simply because it took him much longer than usual to find her on the Doppler. However, Nathan reminded me that everything was probably fine. We had made it past the first trimester, and the chances of anything going wrong halfway through a pregnancy were slim.

When we were called into the ultrasound room, all of my fears were diminished as soon as we saw our baby’s beating heart on the screen. But then the ultrasound technician stopped what she was doing to tell us she needed to go get a doctor. While hearing those words was a little unsettling, we just assumed she needed help with something.

The ultrasound technician returned a few minutes later with a nurse practitioner who took a quick peek at the ultrasound screen, and then proceeded to tell us that our baby was measuring 3 weeks behind schedule and there was basically no amniotic fluid. They told us we were being sent to the Perinatal Center, which is where people go with high risk pregnancies. They couldn’t get us in for several hours, so we had to wait. At this point I was beyond scared and in tears. They escorted us out through a private entrance so we wouldn’t have to walk back through the waiting room in front of all the other happy pregnant women full of excitement: the type of woman I had been not even an hour earlier.

After what felt like an eternity, it was finally time for our next appointment. It didn’t take long to confirm what we had already been told: our baby was too small and there wasn’t even enough amniotic fluid to measure. They also told us there was probably a heart condition, and I needed to go to a pediatric cardiologist once the baby was a little bigger to get more information about that. We were then whisked away to speak with a genetic counselor, who educated us on various fatal chromosomal disorders. The biggest cause of concern was the lack of amniotic fluid. In the womb, babies swallow amniotic fluid, and doing so helps their lungs develop. Without it, it was very likely our baby would need NICU care after birth, even if everything else turned out fine. We chose to focus on the small chance that she would be fine. We were told our baby could die at any time, we could carry her to term only to have her die afterwards, she could live, but with severe disabilities, or there was the small chance she could live and all would be fine. The chance that all could be fine was the only thing that kept us going through that day, and through the months ahead.

I was sent home and ordered to go on bed rest and drink lots of water for two weeks, at which point they’d do another ultrasound to see if the amniotic fluid levels had increased. If so, it was likely that I was leaking fluid. If not, then we’d know the issue was probably with the baby and not with me.

It was a long two weeks, but finally the time came for my next appointment. We were told things had not improved. They sent me back to work on modified bed rest, and made plans to see me bi-weekly until our baby reached one pound in weight, which is the smallest size at which they can save a baby outside the womb. At that point, we would have a few more options.

Over the next month we lived from appointment to appointment. We went to the pediatric cardiologist during this time and it was determined our baby had an AV canal defect, which is most frequently associated with Down’s syndrome, and not the fatal chromosomal defects. However, the small size and low fluid were not associated with Down’s, so neither us nor the doctors could make any sense of it.

At 26 weeks, our baby finally reached the weight of one pound. We were given two choices at this point: we could continue with the bi-weekly appointments and me on modified bed rest, or I could be admitted to the hospital where the baby would be monitored constantly. We were told that with so little fluid around the baby, the chances of her going into distress were high. If I were home, we wouldn’t know it, and she would probably die. If I were in the hospital, they’d do an emergency c-section and try their best to save her. After much deliberation, we opted for hospitalization, hoping to give our baby every possible chance at life. On July 3, 2009, I was admitted. While our friends prepared for their Independence Day celebrations, I began what would become an eight-week stay in the hospital.

While in the hospital, our baby surprised all of the doctors and nurses. She never showed any signs of distress, and she moved much more frequently than most babies without fluid. She also seemed to be growing: she never regained the three weeks she had lost, but she never fell further behind either. Living in the hospital wasn’t easy, but I was able to find some advantages. The thumping of her heart was my constant background music, and I was given a gift of time to focus on nothing but my pregnancy and my baby.

In the eighth week of my hospital stay I was 34 weeks pregnant, and my weekly ultrasound revealed our baby had not grown much in the prior week. Since 34 weeks is typically the normal time to deliver babies in no fluid situations, they decided it was time to induce me. They gave me medications to soften my cervix on August 26, 2009, started me on Pitocin to induce contractions the next evening, and by the morning of August 28, 2009, I was in hard labor. I labored all day without making much progress. After begging and pleading for relief, they finally agreed to let me have my epidural, even though I was hardly dilated. My OB said that if I didn’t progress in a few more hours, he would come do a c-section.

Thankfully, the epidural relaxed me, and I finally started making progress. A few hours later, I was ready to start pushing, and at 10:22 p.m., Madelyn Rebecca was born. She was 15 inches long and weighed 3 pounds and 4 ounces.

The room was eerily silent as they handed her to the NICU team in my room. All I could do was pray that my baby would live. After about ten minutes, one of the NICU doctors told us things weren’t going well, and if she didn’t improve soon they would let us have her to share her final moments. Things didn’t improve.

It felt so surreal as they laid my baby girl in my arms for the first time. Her eyes briefly fluttered open to look at me, and then she closed them again, never to re-open. I couldn’t believe that at any moment, she would breathe her last breath. Nathan and I held her, cried, and then allowed the rest of our family to have that same opportunity. Several hours later the nurse took her so we could get some sleep, and they brought her body back to us the next morning so we could say good-bye one final time before I was discharged from the hospital.

Leaving without my baby was the hardest thing I’ve ever had to do.

The next week was spent making funeral arrangements. Instead of shopping for the stroller and baby bed we would have needed had she lived, we went shopping for a casket and headstone for her grave – something no parents should ever have to do for their child.

The night Madelyn was born, we signed papers authorizing the hospital to do testing on our daughter in an attempt to determine what went wrong. Initial test results showed that her chromosomes were perfect, which surprised all the doctors. Then, several weeks later, the hospital called with our autopsy results. It revealed several problems not seen on the ultrasound, and we were once again sent to a genetic counselor.

Based on the new information revealed through testing, our genetic counselor gave us a few possibilities, one of which was a recessive gene disorder called Smith-Lemli-Opitz Syndrome (“SLOS”). In order for this to have been the problem, Nathan and I would both need to be carriers. If only one of us was a carrier, it would not affect our children. We both tested positive, and we had our answer.

It was nice to have an answer, but it wasn’t the answer we wanted. When two people carry the gene that causes SLOS, there is a 25% chance in every pregnancy that both affected genes will be transferred to the baby, resulting in the child being affected with this disease. It isn’t always fatal, but it does always come with challenges, often both mental and physical. This greatly complicated our decision about future children.

We took several months to decide what we should do next, and then we learned about something called embryo donation. When people go through the process of in-vitro fertilization, they will often find themselves with more embryos than they need. These people are then faced with the decision of what to do with the remaining embryos. One option is to donate them to other families who are either unable to have children on their own or, as in our case, have genetic reasons for not doing so. I did a lot of research on the subject, and we decided this was the path we wanted to take for our next child.

In February 2010, I began calling fertility clinics, as I knew embryo donation programs often had long waiting lists. I was fortunate to find a clinic with no waiting list and very high success rates. In April 2010 I began my frozen embryo transfer cycle, and before the month was over I found out I was pregnant again, due in early January 2011. Several ultrasounds later revealed I was carrying a healthy baby boy.

We know our journey is far from finished. Every single day I find myself torn between love for both of my babies and the pain that still grips my heart at losing my first. Yet even when my pain is at its worst, I am grateful for the time I had with Madelyn. If given the choice, I would always choose this path, because she was in it, even if only briefly.

Thank you Heather for sharing your precious Madelyn with us all!

Long November

It has been too long since I've posted on here and life has become crazy around my house.  Too long to get into, but it's been a bitter/sweet month.  We celebrated our Devon's 3rd birthday this month!   Can it really be 3 years already?  It was hard.  That really sums it up.  I had such great intentions on creating a new service card for her birthday month, but life has really gotten in the way of great intentions.  I'm going to try and do better about posting regularly, at least that is my intention.  :)

Love,
Monica