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How can I express what I felt?  Anger.  Anger with the doctors, with myself, with everyone.  Without hope, without the possibility of being able to do something, except hope in God; maybe it would be in His perfect will to perform a miracle.  Even though in my heart and mind there were many doubts, questions, resentment, and anger, I know fully that God is going to do His perfect will in my life.  It is difficult to accept it – some times more than others – but so it is, and there is nothing I can do in that regard except give thanks.

Sometimes I would break down and cry.  I wouldn’t say anything –  no questions, nothing, just cry.  Other times, I felt like I could tear apart whatever was placed in front of me.  But thanks be to God that He always sent His angels to speak to me about His love.  I know that, up to this moment, I am not here because of who I am but because of who God is.  I know that if we passed through these situations, it is because He has a purpose.  They say many times, God isn’t going to give us more than we can carry.

My two-year-old son was diagnosed with leukemia on May 24, 2010.  When I found out that Jaidev was going to die, Isai had been in the hospital for two weeks.  The following week, he had pneumonia.  My little one had tubes on all sides for one week.  Also, we had to make the decision whether to continue with the pregnancy or end it.  I know that God never arrives late, so we decided to have him.

Thanks to the support of many persons to whom I give thanks with all my heart.  Thanks also to our families who helped us take care of Alek, our firstborn.

On November 11, 2011, we arrived at the hospital.  Thank you, Dr. Lisa and Patti, for all the support and help that you showered upon us at every moment.  Jaidev was born on November 12, 2010 at 5:55 p.m. and died on November 123, 2010 at 2:45 a.m.  Thank you, God, for the time You permitted us to have him.

Almost one year after his birth and death, sometimes I lose control emotionally, but I continue trusting that God is good.  He has never left us, and He never will leave us.

I miss you, my love, my beautiful little angel.

I love you, and we will always remember you.

Your mama,

Idania Melgar

I made a follow up appointment for a month later.

At that appointment (11 weeks) the midwife had trouble locating a heartbeat so she ordered a sonogram to see it. The sonogram technician looked and immediately left the room and got the midwife to come in. They both were troubled because the baby was alive, but had a larger than normal fluid filled sac on the back of its neck. The midwife told us, it might be nothing – but they wanted to order a level 2 sonogram at the hospital right away to get a better look. She explained that sonograms are usually given this early and that it could happen in lots of kids and we just don’t usually see it, because they don’t usually do sonos so early. We were not too concerned.

The next day we went to the hospital and our lives changed. The sonogram technician confirmed it was a cystic hygroma which is often seen in little girls. The perinatologist, came in and very coldly gave us about a 33-50% chance that the hygroma will dissolve and absorb in and that the baby would be completely normal. Even if the sack disappears as it’s suppose to – the doctor indicated there is an underlying reason it happened. He said the chance that the child will die in uteruo are pretty high. He indicated if I made it to 20 weeks that would be really good. He also said I may not know the child died until my next sonogram. The chances are elevated that if she does make it, she’s going have significant challenges. He said many people choose to terminate their pregnancy at this point as the outlook is not favorable. They offered to do an amnio to see if bad genetics showed up. We told him we would not be terminating the pregnancy no matter what, so we would not need the amnio. We decided we would wait and see what was to unfold. The baby was so tiny we felt with a 50% chance everything could be okay, that God could heal the child and give us a miracle. I remember one of the first things that went thru my mind as the doctor was telling us this – was a testimony I had heard at MOPS the year before. A girl told us about her very difficult pregnancy and how the doctors said she too should abort because her daughter’s liver was on the outside of her body and it shouldn’t have been by that point. I remember this girl saying that she and her family prayed and prayed for that liver to move in exactly where it needed to be. Then whenever it was she went back for a follow up appt – it had moved and was just as they had prayed for. She said the doctors were baffled and said it was a miracle as there could be no scientific explanation for it. I felt strongly we could have a miracle too.

My husband and I were in shock. But we knew that our child’s future was out of our hands and God was in control. So we made a choice and went to the church and prayed with Greg Townsend the campus pastor. That was something that was out of character for us. It felt uncomfortable at first. I think now, in retrospect, that was the first step or choice of faith we took in this journey. I just recently red the book, the Purpose Driven Life and love how it says – Obedience unlocks God’s power. God waits for you to act first. Don’t wait to feel powerful or confident. Move ahead in your weakness, doing the right thing in spite of your fears or feelings. This is how you cooperate with the Holy Spirit, and how it develops your character.

After that we went home and I decided we needed more prayer so I sent out an email plea to my friends, family and co-workers – entitled Urgent Prayer Request. Although I’ve been a Christian most of my life, up until that point I had never so boldly asked for faith and prayers from others. I’ve always believed prayer works so I asked a very specific prayer – that the cystic hygroma disappear.

Our next appointment wasn’t for 5 weeks. Within a day or two after that appointment, I felt the baby start moving around inside me. This was a gift from God as most people don’t start feeling anything until around 20 weeks. But Tom and I both, could feel the life inside me rolling and kicking. It was wonderful and a gift of reassurance. For as long as I felt movement I knew the baby was doing okay.

During the weeks we waiting for time to pass – God made himself known to us. Just like the baby was growing in me – my faith grew. Our church and our friends showed us so much love. I received dozens of emails of encouragement and promises of prayer. I received an amazing gift in the form of a new friendship. A God-given friendship. I got a little note in the mail from a girl named Rachel who said she was praying for me. She said she knew what it was like to be told your baby would die and she encouraged me to be strong and reach out to her. I did. I strongly believe our friendship was a divine appointment set up by God. She turned out to be the girl who had given that testimony at MOPS that I thought off after our initial bad news. We set up a play date took to each other and each other’s kids immediately. There was a nearly instant bond between us – and what’s really cool about it is that Rachel helped me sooooo much during my pregnancy, but I too helped her. It’s been a very mutually beneficial relationship. We’ve seen each other nearly weekly since our first play date and talk/email nearly daily now.

Each Sunday at church the messages just seemed as if they were being preached right to me. One week we learned about Abraham and how God had called him to sacrifice his son -Genesis 22: 1-24. It was a test of faith and I knew without a doubt God was challenging me too with a test of my faith. Abraham sets out to obey God’s command without questioning – I was struck by that. Obedience without questioning. After Isaac is bound to an altar, the angel of God stops Abraham at the last minute, at which point Abraham discovers a ram caught in some nearby bushes. Abraham then sacrifices the ram in Isaac’s stead. Abraham’s son was spared, but I didn’t know if mine would be. Somehow, though just knowing that it was a test and practice God designed to grow my trust in him, made it all more manageable. I found great comfort in the invitation to that intimacy with God.

The next sonogram appointment we had (5 weeks later – Friday, August 15^th) was filled with surprises. We found out that the baby was a little boy, Nigel Thomas Weber. The sonogram technician kept going on and on about him and how good all his parts looked. I finally asked her is the cystic hygroma gone. And she said “Oh yeah, his neck looks perfect.” Everything was perfect until she got to his heart and then she stopped talking. The silence was obvious that something was gravely wrong. I said “It’s not right is it?” She said “No. I can only see 2 chambers.” I said “He really needs four doesn’t he?” She said “I have to go get the doctor. I’ll be right back.” Tom and I were very quiet. The doctor came in and confirmed that our son had a broken heart. She was very kind and for that I was thankful. She told us that it was terminal unless he received a heart transplant. I told her I imaged little tiny baby hearts are pretty hard to come by… She said yes, they were. She told me that Nigel should survive the pregnancy fine, because I’m doing all the work for him. But once he’s born he would die very shortly. Sorrow and pain that I could never fully describe washed over me. I slumped over and sobbed and cried “Oh that’s so hard…” She and Tom tried to comfort me, but mostly just let me cry. The doctor again offered to terminate Nigel’s life. She said most people who find out this kind of news; don’t opt to continue the pregnancy. I told her I wasn’t most people.

Another email update was sent out and my email box was flooded with loving responses and support. Food started appearing as friends delivered meals, a very tangible expression of their support. That was a big deal. It may seem like a small thing to bring a dinner. But our world was so rocked. Everything normal was gone. Getting through the day was hard. We had an obligation to try and have some “normalcy” for our daughter’s sake, but it was hard. Having a good dinner restored a tiny bit of normalcy for us. It really helped.

We were told to come back in 3 business days to see a specialist. We went home were remarkably calm, initially. By the end of this pregnancy we figured out this immediate calm we’d receive after bad news was really shock. It typically took a solid day or two until the full impact of what was happening would hit us and then it would roar thru and shake us hard. This time, this shock was definitely the hardest. I sobbed all day Saturday. I had to hide in our spare bedroom because it was just too frightening for my 2 year old to see and experience. The thing about the shock was that it too was a gift from God. It’s truly a survival thing. It kept us from loosing our minds, but it also allowed us time to really truly experience the full depth of emotions that we were entitled to. So often things happen quickly – by drawing it out – I felt more. More love for my children. More love for my husband. More faith in God. More depth and range of intense emotions, like nothing I’d ever experienced before.

Sunday we had a family thing to go to. I was just a mess still. The shock had worn off and I was feeling it, big time. I had emailed an organization called Alexandra’s House on referrals from 3 different people. They were a baby hospice organization. They helped families cope when they new their babies were going to die. As soon as we got to my mother-in-law’s house that Sunday I told Tom I needed to go. I couldn’t handle it. Too many people, too many sad eyes – and my heart was broken. I just started driving around and was sobbing (not the smartest thing to do). My cell phone rang and I answered it to find out that my earth angel was on the line. Kathleen with Alexandra’s House was calling me. She explained she was a retired RN from Children’s Mercy hospital. She was so kind and gently encouraged me to tell her the situation as I was bawling. After I finished explaining about his heart – I had to describe it because I didn’t even know what it was called. She knew and asked if it was a hypoplastic left heart. When I confirmed she said “Dawn honey, that’s not necessarily fatal anymore. There are surgeries that have been done successfully at Children’s Mercy to help babies like that.” I couldn’t believe my ears! Why on earth didn’t the doctors tell us this? I remember crying and saying “really? Nobody told us that.” She then proceeded to tell me about a family friend who has a little girl who had the same condition, but was saved and now is a little girl who loves to play soccer. God sent her to me at exactly the right moment when I needed her and when I needed hope. Kathy asked if she could come to the appt with the specialist. I was enthusiastic to have her join us. She’d know all the right questions to ask and she knew the doctors at Children’s Mercy and likely would know whoever it was we were meeting with that week.

The following Wednesday we went back to the hospital to see a pediatric cardiologist from Children’s Mercy hospital. Kathy was waiting for us in the hospital waiting room. She told us we were meeting with a Dr Rajan, who was very good. She knew him from her days at CM. She described him – a little Indian guy, very smart, who had been helping babies for like 20 years. We were in good hands.

Dr Rajan was awesome. He looked me in the eyes and patted me on the leg. Its funny how small gestures like that can move a soul when the soul needs it… As he looked at Nigel’s heart he quietly chattered on to the perinatologist and sonogram technician. I couldn’t hear him, but could tell it was good. After what seemed like forever he said, “Oh yes. We can operate on this. No problem.” Our hope was back. We were taken to the conference room and Dr Rajan explained in great detail what was wrong and what we could do.

Here is an abbreviated summary of what we learned… Nigel does in fact have the 2 left chambers of the heart and they are kind of working (which is good). He also has a hole in his heart between the left and right side that normally would be bad, but in this case is good. However the left side of his heart and his aorta are very small – too small to sustain him after birth for any length of time. The aorta is very important as it’s the vessel that distributes oxygenated blood throughout your whole body.

The doctor said that Nigel would be a good candidate for a 3 part heart surgery. It’s still a fairly new procedure, but they do it 12-14 times a year and have pretty good success rates up to 70 or 75%, with it the first round and around 90% with the next two operations. They would have to keep his heart working via medication once he’s born until he’s strong enough for surgery (within 7-10 days). After that he’d have to stay at Children’s Mercy for at least 3-4 weeks. The next surgery would be at 6-8 months and then again around age 3.

The specialist also gave me the good news that there is no reason he should die while I’m carrying him. Babies in uteruo mostly use the right side of their heart and that’s his good side.

They offered to make another follow up appt with us in 6 weeks. I was so happy that they’d want to see us again in 6 weeks that we were being given a chance. But I was also keenly aware that this journey was going to be a very, very hard one. I was going to have to turn over my newborn son to a bunch of doctors and they were going to cut his chest open. It was hard to swallow.

One friend of mine who’s son had to have heart surgery as a baby told me this – As you know we have been through the process of surgery on an infant and it will not be easy, but for us the experience of completely placing your child in the Lord’s hands because you are unable to do anything of your own power was one of the most maturing and faith growing processes of my entire life. It has given me a much more God-focused attitude toward my role as mom. Nigel belongs to the Lord and the Lord loves him even more than you do!

Again as time passed the messages at church kept hitting that message home to me – the Lord loves Nigel more than I do.

More blessings and joys happened as we again waited. My sister, whom I love dearly, surprised me and came home from Los Angeles to wait with me (and distract me) for about a week. Chloe turned 2 years old and had an outrageous princess/barney birthday party coordinated and produced by her awesome Nana. My step dad, looked up the meaning of the name Nigel – and we found out it means “Champion”.

About a week before our next follow up appt with the pediatric cardiologist I received a call from the hospital care coordinator. She was the gal that would coordinate Nigel’s birth, transfer to CM, etc… She gave me a sneak peak of what our birth would be like. It was not as I had hoped. I learned that I would need to be induced at 39 weeks. I was bummed about that as I had a natural childbirth with my Chloe and had hoped to do the same for Nigel. I knew all too well that the drugs they use for inductions make natural births much harder. The coordinator told me that as soon as Nigel is born he will have to be ventilated as the drug they will have to give him to keep his heart working until they operate makes babies forget to breathe. She made it sound very much like I wouldn’t even get to hold him – as he’d be immediately taken away and worked on. She said as soon as he stabilized they’d take him to CM. The part I really wasn’t expecting however was that I would not be allowed to leave and go be with him for at least 6-8 hours. That was painfully discouraging. The other thing she said was that I needed to be sure and plan to have support with me – because Tom would go be with the baby and I’d be all alone unless I planned to have someone there. She said that often gets overlooked and it’s a very dark time for the moms. Once I would be released she said I’d only have a 2 hour pass and I’d have to go back to the hospital.

This was all news that hurt to my core. Throughout this process I’d get horrible news, then I’d get my head around it, start to feel a little better and then get more bad news.

It took some time to soak in… Initially all I heard was I would give birth, he’d be taken from me immediately. He might live, but I wouldn’t get to be with him for the first day of his life, at least not much. Then as soon as this teeny tiny person showed he was stable, people I didn’t know were going to ice his little head, cut his chest open, stop his heart and rearrange him.

After some encouragement, I found peace in the latest batch of horrible news. I learned that I couldn’t take care of him, even though I wanted to and felt that my milk, my arms, my love were essential. For him it wasn’t.

Our next appointment set up for October 1^st. That appointment did not go well.

Nigel’s one big problem had turned into 2 very big problems. In addition to this heart, he now had a blocked urethra. This meant that he couldn’t pee and therefore didn’t have the amniotic fluid he needed to practice breathing with. His little bladder was enormously full and it looked as if it was backed up all the way to his kidneys. He was potentially in kidney failure. Kidney failure was 100% terminal. The doctor said that this development was practically unheard of at this phase of pregnancy.

The perinatologist said that there was a chance that if he wasn’t in kidney failure that there was a surgery that could possibly be performed in Cincinnati or San Francisco while he was still in uterus to open the blockage. The only way they would know for sure was to drain the urine in his bladder and send it off for testing. To do this they had to stick a big needle in my belly, into him and drain his bladder. It was pretty much like an amniocentesis.

At the thought of this I began to really freak out. My whole body started violently trembling. I came in thinking we were going to have a good appointment with the cardiologist and now was told my child would certainly die unless they operated on him while he was still growing inside me. Kathleen and Tom physically had to hold onto me as I was shaking so hard. And then God comforted me. In a way I still can’t fully explain and indescribable calm washed over me. I lay back on that table and I sang a worship song in my head. For some reason, I can’t remember what song it was. It’s like it was given to me and then taken away – but while I laid there singing this upbeat happy praise song I was 100% calm. I didn’t move at all while they did the procedure. I had pure peace. Both Tom and Kathleen saw it too.

Once that was over we had to wait 2 days and go back to do it again to finalize the testing. They said if we did qualify for the surgery it would only be a temporary fix and he’d have to have additional surgeries once born. This cutting edge surgery was typically only done on babies that were otherwise healthy so I felt fairly confident even if his kidneys tested out okay, we would likely be denied.

All I could do was surrender to the chaos of the moment and the experience. We try so hard in life to do what’s right and to make decisions, when really so often all we can do is surrender and let God’s will be done. I knew that the hard decisions were about to be made for me and all I had to do was live with them.

Once again, proof that God has designed mothers in a miraculous way… The perinatologist indicated that even if Nigel was in (or would go into) full kidney failure, that he will likely survive the pregnancy. My body was doing all the work for him. Tom summed it up with he said that I, his mommy, was his dialysis machine, his ventilator, and his heart pump. While he’s inside me, he should be okay as I’m doing everything for him.

5 days later I found out that no surgeries would be necessary. Nigel was in full kidney failure and nothing could be done medically to save him.

It’s weird when you learn your baby is going to die. Everything shifts. Being pregnant in public is extremely hard as people are overjoyed by your belly. The endless “when are you due?!” questions were excruciatingly hard to answer. Most often I’d just say the date and change the subject. But on many occasions people would press on with more questions and inevitably I’d have to tell them “my baby is going to die”. The panic, the pain, the embarrassment on their faces… It was awful. People are uncomfortable swimming in others grief. The way they try and respond to it is, naturally, to try and fix the situation. Of course, they can’t, but letting the silence hang there is hard, so they try and fill it with words they think will help. I sense people’s intentions, and know that is their desire, but honestly it falls flat. It means so much more for someone to make eye contact and just say “I’m so sorry.” and leave it at that.

Nigel was a very active boy the whole pregnancy. He was almost constantly moving around and kicking me. It was great. At night when I’d “rockabye” Chloe was especially sweet. I swear he’d move over more to one side of my tummy and Chloe would sit on the other and he’d move and kick to my songs and stories.

Chloe was amazing through the experience. She is a very empathetic little girl. One night she asked me if I was sad. I told her “yes, because baby Nigel is sick.” Then she asked if she could talk to him. So I lifted up my shirt and she got down really close to my belly button and gently patted my stomach, as if comforting him and said “it’s okay Nigel. Grandma will make you better. It’s okay…” Then she gave him a kiss (because those always fix her boo-boos) and asked me “is that better momma?” She continued to move and comfort me daily.

We were given the gift of a free 3D sonogram thru Alexandra’s House (the baby hospice). Tom and I brought both of our mom’s thinking it would be a very special experience. We’d heard so many good things about them. Unfortunately, like every other appointment it didn’t go all that well. Because there was so little fluid it was tough to see much. The sonogram tech also (trying to be helpful) asked us if anyone had prepared us for what he’d look like at birth. No… She basically said he might be kind of scary looking and squished because of the lack of fluid. She also said these babies are often stillborn. She said in her experience if he lived it would just be for minutes, at best. It was disappointing. I was hoping for maybe an hour. It’s crazy when you loose a child how desperate you can feel. You truly grasp for anything. This was just another day that showed me when you think you have a grasp on everything, you really don’t. Something can come right along and shake you. Just hold on and don’t let go.

Tom and I found great comfort and strength in God thru this ‘heavy’ time of waiting on Nigel. Each day felt like impending doom was looming and we chose to focus on 2 scripture verses.

Romans 8:28 – Know that all things work together for good to those who love God.

Proverbs 3:5 – Trust in the Lord your God and lean not on your own understanding.

I was very concerned that Nigel would come early. My Chloe was 4 weeks early and if he followed suit, he’d arrive on Christmas Eve.

On November 15^th I had a maternity photo shoot. It was another free service provided by Alexandra’s House. It was fun. Honestly probably the only purely fun pregnancy experience I had with Nigel. The gal fixed my hair and make up and made me feel beautiful. The plan was that we were supposed to call her once I went into labor and she’d come and photograph him. I was told by the other parents at Alexandra’s House that good photographs are very important because that’s all you have. After the shoot, I told Tom that I thought the gal was very nice, but for some reason I felt like I was supposed to ask Aimee Price (a gal from my night MOPS group) to come and take his pictures. Tom deferred the decision to me. Nervously I asked Aimee to come and witness and capture what I knew would be a very intense experience and graciously she agreed.

A week before Thanksgiving, November 19, Chloe didn’t sleep well and had a cough. I opted to keep her home from Mothers Day Out and take the day off work. That morning when we were getting up and around she and I had a very important conversation. It occurred to me that she and I had talked a lot about how Nigel was sick. But not necessarily that he would die. So I told her that soon, Nigel would come out of my stomach and that because his heart was sick he would die and go live in heaven with Jesus. I re-enforced that I wasn’t sick and she wasn’t sick, just Nigel. She said “He won’t be sick anymore in heaven?” And I assured her no.

We had a beautiful morning together. Chloe was super sweet and well behaved. We played and made crafts. I made an obstacle course out of pillows and toys. We pulled out the Christmas tree and ate warm cookies while we decorated it. While we were decorating I looked down at Chloe and asked her “Do you remember where Nigel is going to go?” She said “With Jesus. He won’t be sick anymore.” Around 10am I sat down on the chair and felt Nigel stop moving. I suspected he was gone although I didn’t say anything to anyone.

The next morning I woke up around 4:30am and woke up Tom. I told him I thought Nigel was gone. He was surprised, but knew how in tuned I was with my body and him. Tom just held us.

I called the doctors office at 9am when they opened and told them the situation. They had us come in an hour later. Within seconds of the sonogram being turned on, we could tell he was gone. We had gotten good at reading those things. Dr Swartzman was off that day, but was due in Saturday morning. The on duty doctor told us to go home and pack up and come back to the hospital that night at 9pm to start the induction. I sent out another email update to let everyone know he was gone. My mom kept Chloe that night at her house and Tom and I rested before leaving. It had been an exhausting 8 months and we were about to meet our son.

When we arrived at the hospital we were given a birthing room in the far corner. A gift not to have to hear other mother’s giving birth to babies that cry. I had a TERRIBLY stuffed up nose/sinus infection and was just miserable. The nurse got me situated and ordered a nasal decongestant. I was given an aggressive induction drug that would have to be re-administered every couple hours. I was already having good contractions so I figured I’d have him in/by early morning. Around 11pm I finally got the nasal spray and did a squirt up each side of my nose. I could breath!! It was glorious, I felt SOO much better. I was given a sleeping pill and we did our best to rest.

My contractions were intense. I endured them and in the wee hours of the morning the nurse had a good talk with me. She encouraged me strongly to get an epidural. We talked about how scared I was of them and how I was able to have Chloe without it. She made me realize I could birth him without but there was no purpose to this pain. I conceded to receive the epidural. I was terrified as they put it in. It did help the pain though. I was still feeling quite a lot on one side of my body so the head anesthesiologist came and redid it. He was good. It was much easier and more effective once he did it. I was numbed up.

My dad, who does not do well in hospitals, arrived in the morning to be with me. Initially I didn’t really think I wanted the “company”, but it turned out to be really comforting to have him there. I realized that I was trying to protect him from having to experience something I knew he didn’t want to, but his parental desire to father me was far greater. Much like our heavenly father’s desire to be near us when we are hurting. The labor went on for a long time. By mid-morning we called Aimee and told her I thought if she showed up around 12:00 or 12:30pm, that would be good.

The morning drug on. We were in oddly good spirits, no tears were shed. I begged for food as I was hungry. At one point Tom was on the phone with my mom giving an update and I thought my stomach growled really loudly. He turned around and looked at me so surprised. I just shrugged my shoulders and said “What?!? I told you I was hungry?” As soon as he got off the phone I let out a looooong fart. The epidural was strong and I had no control. I looked at him and said, “Oh my gosh.” Then I started cracking up because I realized it wasn’t my stomach growling a minute before, but me farting. We both were rolling in laughter which quickly turned to sobbing. It was crazy. It took a fart to make us laugh, to bring us to the tears we needed to shed. After that the tears were more abundant.

Our pastor, Greg Townsed, showed up and we all held hands prayed. Right after the prayer I had a big wave of nausea and kind of panicked and called the nurse. Aimee showed up at 12:30pm. She and the doctor came in and said they’d check me. Everyone was leaving and they pulled my leg up (which was 100% dead weight) and they both jumped back startled and said “Oh, he’s out! Tom you need to move away! Go stand over there.” At that point I freaked out. Their reaction frightened me as I thought he must be really scary looking. I closed my eyes and cried as they tried to reassure me that he wasn’t scary. Once I finally opened them, I saw he was beautiful. He looked like a tiny little Chloe, but with dark wavy hair and bright red lips and oh, he smelled so good. I held him in the blanket, scared to touch him. He looked so fragile, so perfect, so peaceful. He was born at 12:36pm and weighed 3 pounds, 3 ounces and was 16 ½ inches long. Aimee had been in our room for about 10 minutes and captured the fear, pain, love and beauty of that precious time perfectly.

We did opt to have Chloe see her brother. She tickled his little feet and then wanted to go to the mall for pretzel bites. We spent about 2 ½ hours with Nigel and then told him goodbye. He was warm and his skin looked good at first, but he deteriorated quickly.

Shortly after he was born, my nose clogged back up and the nose drops did nothing to help. I choose to believe in God’s provision to take away that extreme discomfort for the birth.

I learned after he was born that I had an unusually strong epidural. The doctor and the nurses were trying to spare me from having the emotions of the delivery experience. They had hoped he would just come, just like he did. In retrospect that was so kind.

My pregnancy with Nigel was so special. I learned so much about myself and especially about what faith really means. I thought (and said) when all of this started “how can God be glorified if Nigel dies?” All the prayers will be denied, hearts will be broken, and people will feel let down by God. I couldn’t fathom how good could come from such a tragedy. But God truly can be glorified, even in the worst of experiences. So much good came from my time as Nigel’s mom.

In simple ways, I tangibly saw God’s provision. When I went on maternity leave early we didn’t have the money set aside yet for my being out of work. Shortly after getting home after having Nigel we received a check in the mail for $1000. It was an unexpected bonus and exactly how much we needed to cover our expenses.

Another example of God’s provision is the timing of his delivery. Nigel came a week before Thanksgiving. We were given some time to mourn, but more importantly we were given the distraction of lots of family activities and love over the Thanksgiving weekend. In large part, our pain was behind us. We mourned so heavily up to loosing him, knowing that he was in heaven and the fear of the unknown was gone – was something to be very thankful for.

Another example of God’s provision is that Nigel died of a cord accident. It never occurred to us that would happen, but it did. His umbilical cord got squished and the protective jelly got rubbed off so that the cord came apart – because he didn’t have fluid to protect it. Saying goodbye to him was hard… God spared us from having to do it twice. Had he been born alive, we would have had to watch him die and would really have to say goodbye twice. I’m thankful that he just went straight to heaven. He lived a warm, cozy life. He never sinned, never new any pain and went straight to Heaven.

I learned that waiting grows faith. I’m thankful for the months I had to share my Nigel story with my friends and family. We live in a world of instant gratification, but when you wait, you have the opportunity to learn and to fully experience the depth of your emotions and your experience. Without a doubt, my trials built my character and my faith. In the bible James advised -Don’t try and get out of anything prematurely. Let it do its work in you so that you become mature and well developed.

I learned that God uses problems to draw you closer to him. The bible says “The Lord is close to the brokenhearted; he rescues the crushed in spirit.” Keep in mind it takes time, but my most profound and intimate experiences of worship have been in my darkest days. When I was out of options, and the pain was great, I chose to turn to God. It was during my suffering when I learned to pray my most authentic, heartfelt, honest-to-God prayers. I’m grateful for my time with Nigel, as painful as it was, it was also one of my greatest gifts as it allowed me to truly, truly depend on God.

I also learned an intimate lesson in sacrifice. I have a far greater appreciation and empathy from a parental perspective of the sacrifice of Jesus Christ. Jesus was God’s son and he died for his glory. Before I mentioned I couldn’t fathom how Nigel’s death could bring God glory – I get it now… If we turn to God, not rebelling against our hurt, we let God transform it with greater good. What the Lord has given us can either be taken into ourselves as pain or given back to him as a holy offering, one that glorifies his name and gives meaning to our loss. Romans 8:28 – All things work together for good for those who love God.

I’m honored to be a part of it. People that don’t pray, prayed for us… Nigel got them talking to God. I have received numerous emails that our experience has deepened or even started faith in people. By allowing God to turn our tragedy into something with meaning, Nigel brought glory to God.

We were introduced to Alexandra’s House when we lost our daughter, Kinley, unexpectedly in March 2010.

My pregnancy was going well and I had reached 27 weeks. I woke up on a Monday morning and realized she had not woke me in the night by kicking me. She was very active, especially at night. I went to work and noticed little to no movement, so I called my doctor and they asked me to go to the hospital for monitoring. They monitored her heartbeat for an hour, it was good and strong, but I still wasn’t feeling her move. They sent me home and agreed to do a follow-up ultrasound the next day.

When we went in for the ultrasound, there was no heartbeat. I felt as if my whole world crashed down around me.

I went in to be induced that evening and we had Kinley at 9:58am on March 24th. She was beautiful, looking just like her big brother.

I attend the monthly unexpected loss group at Alexandra’s House and find it so helpful.

It’s so encouraging to be surrounded by other parents that know how I’m feeling.

Three years latter it is easier to see that the time with Riley was a blessing beyond compare. I wanted to share my thoughts with you to use as the Lord leads you.

What did carrying Riley to term give me?
It gave me time to feel the pain. I felt it deeply. I embraced the pain as part of the experience. It gave me time to explore and understand the pain. It gave me time to see how intertwined the pain is with the joy of life. Now when something reminds me of Riley I am comfortable feeling the pain again because I know there is joy on the other side of the pain.

It gave me time to start processing. It gave me time to read and find out how others handle similar situations. It gave me time to learn about Trisomy 18 and to realize that we are not alone.

It gave me time for lessons. My major lesson was about worry. I learned not to waste time in worry about what is to come. Each day can bring either joy or disaster. I am now trying not to block out the joy by worrying about possible disasters.

It gave us time to plan the most meaningful funeral arrangements and internment options.

It gave us the ability to share Riley with our daughter, our extended family, our friends and our church.

It gave us time for pictures and memories.

It gave me the blessing of seeing our church act in the loving, caring way that God wants us to act all the time.

It gave me the comfort of knowing that no choice of mine contributed to his death. I would have felt responsible for the timing of his death if we induced labor before term. We did it in God’s time.

It gave Riley time to do his ministry. Riley ministered to many people. I’m sure his live touched more people than I realize. I will have a surprise in heaven of finding out exactly what God did with Riley’s life because Steve and I decided not to terminate the pregnancy early.

It gave me time to pray.

Wanda – Riley’s mother

God took His baby Home. He knew how Payton was suffering so He gave us eight awesome months to say “good-bye”. God knew how much everybody cared about Payton and how much we prayed and wanted her to stay with us. But He also knew Payton was in pain so He did what was best for her by taking her Home and taking all her pain away. At least now no one has to worry about her. She is forever safe and in God’s arms. In Psalm 127:3 it says that children are a gift from the Lord. And that is what Payton was: a gift from God.

I think she was here to teach us all a lesson – that we should cherish every moment we have with someone and never take anything for granted – because we never know when it is their time to go. To have had Payton as long as we did was a miracle. From the day she was born she beat all kinds of odds. (The doctor refused to do a C-Section when Payton’s heart rate dropped so much during contractions. When Payton was born, the umbilical cord was wrapped around her neck twice and around her belly. She survived even that. She was meant to be! )

To be anything but happy for her now would be wrong because she tried her hardest to hang on and to be with us for as long as she could. Now it is time for her to take a rest, to have no more pain, and to be with God, because that is what is best.
We are all going miss her so much but even though she is gone:

SHE WILL ALWAYS BE IN OUR HEARTS AND IN OUR THOUGHTS FOREVER!!!!!!!!!!!!!! WE LOVE YOU PAYTON!

Dear Andrew and Amber

Monday, August 10th, 2009

After having my second miscarriage (sixth pregnancy) in August of 2001, our doctor suggested to my husband, Curtis, and I that we not rush into the decision concerning future children. In fact, since my uterus would still be healing and would not be ready for another pregnancy, he strongly advised us not to even think about getting pregnant again for another 3 or 4 months. Imagine our shock, and delight, when we discovered in November that our birth control had failed us and we were pregnant once again! This was especially surprising since Curtis and I had been through 3• years of infertility treatments before finally getting pregnant with our 3PrdP child. Because of the surprise, we knew from the very moment we saw the positive pregnancy test that this was God’s will, and the Lord had a very special plan and purpose for this baby!

Since our previous miscarriages had occurred fairly late (13 and 15 weeks), our doctor knew about our concerns for this pregnancy. Early sonograms (at 7 and 11 weeks) showed that our baby was due July 19, 2002, and everything appeared fine. Our doctor agreed to another sonogram at 15 weeks. I was so anxious to have this third sonogram, to see the baby’s movement and heartbeat, and to have the reassurance and peace that everything was okay.

Due to the ice storms in Kansas City, this much-awaited sonogram was postponed for 2 weeks, so I was now 17 weeks into the pregnancy. For some reason, I had trouble sleeping the 2 nights before this sonogram. I was already feeling the baby move some, but not too often, and not very strong. I kept thinking about different things that could be wrong.

Because we expected to be able to determine the sex of our baby, we invited our oldest daughter, Kelsey, to come with us. At the sonogram we were thrilled to see the heartbeat right away, also the baby moving. Next, our sonographer asked if we wanted to know the sex. She was able to tell us immediately that we were going to have a son! Wow! We already had two boys and two girls (boy, girl, boy, girl), and now another boy (it fit our pattern). We assumed that after she determined the baby’s sex, the sonogram would be over. However, she continued, spending lots of time taking pictures, and saying the baby wasn’t cooperating for her to get the angle that she needed. I asked her what she was looking for, she answered she was trying to see what was on the other side of the cord. I just accepted that, and didn’t ask any more questions.

After the sonogram, Curtis went back to work and I saw our doctor for my regular monthly appointment. He explained that the sonogram showed something was wrong (there was an “echogenic bowel-like area near the fetal abdomen”). They suspected our baby had “gastroschisis”, meaning that the bowels were developing outside his body. They wanted to confirm these findings with a “higher fidelity” sonogram machine at the hospital. They made us an appointment for the next week with the perinatologist.

So, after going in and hoping to find out that our baby was developing perfectly, we received very confusing news. How I wished I hadn’t asked for this sonogram! After taking Kelsey back to school, I called Curtis at work. I could hardly tell him the news through my tears. He immediately went on the Internet and looked up echogenic bowel and gastroschisis. We found out that an echogenic bowel is a “soft” marker for Down Syndrome, and gained a better understanding about what gastroschisis is and the procedures to correct it. We were most fearful about the echogenic bowel and what it might mean.

Now the eternal wait for the next sonogram began, also lots of prayers. Since I’d known from the beginning that this baby was the Lord’s, it just
didn’t make sense that something might possibly be wrong. I went from feeling a peace about it, to thinking about the worst that might happen, to thinking that the sonogram was wrong and our precious little boy was fine.

I was so scared.

Our sonogram at the hospital showed there was no sign of gastroschisis, for which we were very thankful. However, the presence of echogenic bowel was significant. Also, our baby measured 1• weeks smaller than he should have. We now had two soft markers for Down Syndrome. The specialist gave us a 90-95% Cchance Cof having a healthy baby. But as selfish parents, we were very concerned about the 5-10% chance of problems. At the time, Down Syndrome was our greatest concern, and was basically the limit to our understanding of chromosomal abnormalities. He asked us if we wanted to have an amniocentesis done, but we knew what many use amnio results for, and that was never an option for us. God has the sovereign right to create, sustain, and end life. It was easy for us to decline, plus I wasn’t crazy about going through the procedure. Another sonogram was scheduled at the hospital in two weeks.

As Christians, we held to these beliefs as central to our faith – that God is in control, that God is entirely good, and that God is full of grace. So, we prayed! We shared our news and prayer request with our family, friends, and church. I prayed so fervently that the echogenic bowel would disappear, and that the baby’s measurements would improve. Unfortunately, that would not be the case.

At our next sonogram with the perinatologist, we were told was that the echogenic bowel was still significant, and our baby still measured smaller than he should. I was so confused and disappointed! I had been praying so hard that both of these would be corrected, and that our baby would be 100% whole and healthy now. I honestly had such a peace about it when we went in to this appointment. Then the specialist told us more devastating news. He had found a heart problem, an Atrial Septal Defect, along with possibly another heart defect. He also detected, and it was very obvious to us, that our baby had “bilateral clubbed feet”. He stated that heart defects are very prevalent with chromosomal abnormal babies, in which the most common was Down Syndrome. He was very honest with us, and stated that on our last sonogram he saw “smoke”, but this time he saw “fire”.

We went numb. We wept. The reality of our baby’s situation had started. He asked again about an amnio, but we were still against it. We felt like the baby had enough problems, and we didn’t want to put him through any additional risks. He wanted us to come back in 2 weeks for another sonogram. He also referred us to a Pediatric Cardiologist, since it appeared our baby would need heart surgery following his birth.

We were so heartbroken, devastated, and confused. There are simply no words to describe how we felt. I would look at my stomach and think that this was all so wrong, that this couldn’t really be going on inside me. But, we had seen for ourselves that it was true. Now we questioned God. If God is in control, why the “mistake” with our baby’s development? If God is good, how could this happen to an innocent baby? If God is full of grace, why the tragedy and grief? But still, we were so thankful that we had the Lord to cry out to and to lean on. What else could we do?

We then knew that we needed to decide on a name for our precious son. For whatever reason, we had waited until the last months of pregnancy before we had decided on and/or announced our other baby’s names. This time, we felt a sense of urgency. I had always liked the name Matthew, which means “Gift from God”. Our other sons are named Tyler and Austin, so we felt that we wanted to continue this “Texas” theme with our third son. Curtis looked over the Texas map and came up with a few suggestions. We chose the name Trenton Matthew Brown. We later learned that the meaning of Trenton is “outpouring” or “torrent”. Trenton Matthew – outpouring of gifts from God.

Our next sonogram was with our initial sonographer. The doctor’s office was evaluating a new machine for future purchase, and asked if we would consider being scanned during this trial period. Of course we jumped at the chance. When we arrived for our appointment, the sonographer asked if we would mind if the doctor that specialized in “high-risk” pregnancies came in, we immediately agreed. During the sonogram they confirmed what the hospital had found plus more, including excessive amniotic fluid and inconsistency in Trenton’s measurements. I remember lying on the table wondering what else could possibly be wrong.

It was at this appointment, at 21 weeks, that we discussed the many fetal abnormalities. Indications were pointing to a chromosome abnormality, whereas Down Syndrome (Trisomy 21) is the most common. The next predominate chromosomal abnormalities are Trisomy 18 and Trisomy 13, both of which are incompatible with life. Curtis asked which abnormalities were associated with clubbed feet. The specialist left the room and returned with a 3-inch thick medical book that described thousands of abnormalities, and had many pictures that you never want to see. He showed us a list of abnormalities associated with clubbed feet. Down Syndrome was missing from that list, but both Trisomy 18 and 13 were there. That was when Curtis was convinced that we had a very high probability of a fatal abnormality.

It was later that evening that we decided to have an amniocentesis. The amnio would tell us which chromosomal abnormality our son had, but not the extent of the abnormalities. We now felt that by gaining this knowledge, we would be better prepared for Trenton and for what was ahead of us.

The amnio was performed the next afternoon. Afterwards, the doctor told us that when we received the results, he would go through genetic counseling with us, and offered more genetic counseling at the children’s hospital. He wanted to make sure that we were taking care of ourselves, of each other, and our children. It would also help us prepare for what lay ahead of us, and possibly to prepare us to say “hello” and “goodbye” to our baby at the same time.

I had a peace that having the amnio done was the right thing. We continued to pray, and began our long two-week wait to receive the results. I knew I would be a nervous wreck the closer the time got for the results to be back. We prayed and asked the Lord to work a miracle in Trenton’s life, because we knew He is fully capable of doing that! But we also knew that we would accept the outcome that was His will, and would give Him the glory for whatever was ahead of us.
The day before we got our amnio results, we had another sonogram at the hospital. It showed everything was still the same. During the sonogram, we found out the perinatologist’ primary motive for scheduling this appointment was to again encourage us to have an amino performed. After he found out that we had already one, he did not spend much time with us. At one point during our short sonogram he concentrated on Trenton’s profile. Kelsey exclaimed, “How cute!” She was absolutely right, what a darling boy!

As we were leaving the office, the nurse gave us a book and said we might want to look over it. It wasn’t until after we had left that we realized it was mostly about abortion (or “interrupting the pregnancy”, as the book called it)! I was so hurt that they thought we would consider that, but knew that it was a secular view that if something isn’t perfect, you just get rid of it. To me, that seemed like squelching God’s power to perform a mighty miracle and alter God’s plans.

Exactly two weeks after our amnio, we received the heartbreaking results. It revealed that our precious son had Trisomy 18 (an extra 18PthP chromosome), a rare, fatal, chromosomal abnormality. The doctor told us we would either lose our little boy before, during, or shortly after birth. Of the Trisomy 18 babies that do survive pregnancy and birth, 50% die within the first week, and 90% die within the first 6 months of life. Knowing that the amnio results are 99% accurate when a problem is found, our last hopes for a healthy baby were gone. I felt as if someone had ripped my heart into pieces. We felt as if this were the worst day of our lives.

The doctor told us we needed to be making some difficult decisions (regarding how we wanted to handle the labor and delivery, also about a memorial service vs. graveside service vs. funeral, etc.), but of course all the decisions would be based on different scenarios. These are definitely not choices you think you’ll have to make when you’re pregnant!

He also told us that he was obligated to tell us that abortion was one of our options, even though he already knew what our answer would be. By then he knew us well enough to know that abortion was not an option! God had created this little baby, who were we to end his life? He went on to tell us that I should monitor how often I felt our baby move, and to call him if I hadn’t felt him move for whatever amount of time we decided on (12 hours, 24 hours, etc.). At this time, Trenton seemed so active and energetic; it was so hard to imagine him having something so seriously wrong.

I had asked our doctor if we could have a copy of the amnio report. When I saw the results written in black and white it seemed to make it so much more real. I was starting to get over the initial shock, but now I was starting to get angry that this was happening to us.

Although I still trusted God with everything, I wished I could make some sense out of what was going on. I wondered why God would give us this “miracle baby” just to take him away so soon. It all seemed like too much to handle, especially knowing it could go on for four more months. I knew for certain that everything was in the Lord’s hands, and Trenton and I were in His care, but some days everything seemed absolutely unbearable.

After hearing of Trenton’s condition, a friend told me about Alexandra’s House. She wanted me to get in touch with Patti Lewis, the founder. As hard as it was, I called Patti that week. I think there were two reasons it was hard for me. Not only did it mean telling someone our baby had problems, but I was also asking for help. After we visited, I was so thankful I had called. Patti shared with me about how Alexandra’s House was started, told me some about what she does to help and support the families, and sent us more information.

Patti and I were able to meet in person soon after. She immediately put me at ease, and we visited for two hours! She gave me suggestions on what to do to prepare for Trenton’s birth (such as writing a birth plan for the doctor and hospital), also ways to help our family grieve our upcoming loss. She offered to do whatever she could for us, including what I called our “dirty work”. (She called people at the funeral home and cemetery to let them know of our situation and see what they could do to help us. These were things I knew I could not do myself.) It simply amazed me that there was someone who was willing to do this for us!

Our next sonogram, at 32 weeks, again revealed even more problems. The sonographer saw several small pockets of fluid on his brain (hydrocephalus). Trenton measured 2 pounds, 13 ounces, approximately 3-4 weeks smaller than he should have been. He was breech, so I was facing the possibility of having a C-Section for his delivery. Curtis and I had discussed this, and agreed that we would have a C-Section if it looked like Trenton would be under too much stress and possibly not be able to survive a vaginal delivery. We so desperately wanted a live birth, which is exactly what we had been praying for since we found out Trenton had Trisomy 18. We wanted to be able to spend whatever amount of precious time we could with him during his short life.

I was now going to the doctor every week to have Non-Stress Tests (NST) and sonograms. The tests were showing that Trenton was doing as well as possible, and tolerating all of my Braxton-Hicks contractions well. I wondered if I could ask to have a test done on me, to see how I was tolerating everything!

My sonogram at 35 weeks gave both good and bad news. The bad news was that more problems were found (a dilated kidney, also a portion of his brain appeared to be missing). His measurements were very inconsistent; the smallest was now 7 weeks behind. The good news was that Trenton had turned, and was no longer breech! At one point during the sonogram we could tell Trenton was holding onto his umbilical cord. He had the sweetest little face, and pudgy cheeks! Curtis had not gone with me to this appointment, he simply didn’t want to hear and see any more bad news. Knowing we wouldn’t have Trenton with us for very long, I wanted to have as many sonograms as possible. I wanted to “see” him while I could, and try to imagine what kind of personality he might have. My child, whom I loved so much.

The doctor was very pleased that Trenton wasn’t breech any more, and said we could try to have a normal delivery, if it appeared that he wasn’t under too much stress. What an answer to prayer! God was still showing us He was the one in control.

The doctor wanted us to make it 2 more weeks (to 37 weeks), and then he planned to induce labor. He felt like Trenton’s lungs would be developed enough at that point. Also, by inducing labor at that time, it would decrease the risk of a stillbirth if we waited any longer.

The end of my pregnancy was such a difficult time. The excessive amniotic fluid made me so big and uncomfortable. (At 34 weeks I measured 42 weeks. After that, the doctor quit measuring!) I actually felt a relief knowing the pregnancy would soon be over. I hated feeling that way, knowing that it could also very well mean that the end of Trenton’s life on earth was very near, too. Sometimes I was so ready for it to be over, other times I wished I could keep him safe inside me. Even though I knew he would be in a much better place, I was still so selfish.

Exactly one month before my due date, I felt like I’d hit rock bottom. I was so tired of not feeling good, and not knowing when and what was going to happen. I felt so drained, both emotionally and physically. I had absolutely no energy or patience, and felt like I wasn’t being a good wife or mother to our other four children. Also, one specific prayer had been that nothing would happen with Trenton until after our son Austin’s 4PthP birthday, which was that day. The Lord had answered that prayer, and I now felt like I should be ready for something to happen at anytime.

The next day I had another NST at the doctor’s office. It showed Trenton’s heart rate was in the 90’s (it should be in the 120-160 range), and my contractions were not showing up nearly as strong as they felt. After a quick sonogram to check on Trenton’s position, (just in case we had to have an emergency C-section), we went to the hospital to be monitored. This machine showed that everything was fine. I was having regular contractions, but I wasn’t feeling much movement. However, towards the end of the 3-hour test, I felt the strongest kick I ever had from Trenton. Little did I know at the time, but that was to be the last time I would ever feel him move.

The next day I didn’t feel any movement. Although I kept pushing and poking on my stomach, I couldn’t get any response from our son. I was still having some contractions, but not as consistent or severe as they had been before. I was getting very concerned, but dared to hope it was just because there was so much extra amniotic fluid.

The next morning we called our doctor. He sent us to the hospital to see what was going on. We went straight to the Assessment Room, got there right at noon. The nurse didn’t hear a heartbeat on the fetal monitor, so called in the doctor. Knowing how easy it was to find and hear the heartbeat, we immediately knew what had happened. The hospital staff then got the sonogram machine, focused on his heart, and confirmed there was no heartbeat. Our son had died. He would be stillborn.
Curtis and I were completely overcome. We had so desperately wanted to have a live birth, and to spend some precious time with our son. The first phone call Curtis made was to Patti. She said she’d be there for us as soon as she could.

Shortly after being moved to a Labor and Delivery room, the nurses prepared me to induce labor. I shared our birthing plan with them. I was so thankful that we had already decided on what we would like to have done during this time. About 2:00, the doctor started Pitocin in my IV, and then broke my water about 4:00. About 2 hours later I had an epidural, as I was having very strong, consistent contractions by then.

At 8:15 p.m., 6 hours after being induced, Trenton Matthew was born. The nurse immediately held Trenton up for us to see him, but it was a hard angle for me to see, except to notice how purple his skin was. She asked if I wanted to hold him, I asked her to wrap him in a blanket first. I really didn’t know what to expect Trenton to look like, and was very surprised by his appearance. He was so still, and his color was so dark, with deep red rosebud lips. Yet he was so peaceful and warm, and such a perfect fit in my arms. Even though he had many “imperfections”, he was a beautiful little boy.

Curtis and I had some time with Trenton before we invited our family and friends back in our room to see him. It was very humbling to see them holding and loving Trenton. I am so thankful that our oldest children, Tyler and Kelsey, were able to see and hold their baby brother. Austin was able to see him too, and later asked if we had a car seat for Trenton. It was so hard for us to explain to him that we didn’t need one, when we didn’t even understand it ourselves.

We were able to take lots of pictures. Although they were hard to take at the time, they will always be family treasures.

While Curtis took our children home, Patti and another friend stayed with me at the hospital. I was so glad they were there with me. The nurses had taken Trenton to be cleaned, weighed, and measured, and I was thankful not to be alone.

The nurse came back to tell me that Trenton weighed 3 pounds, 15 ounces, and was 17 inches long. What an incredible little boy! She also told me it looked like I’d had “placental abruption”, which meant the placenta had detached from the uterus too soon, thus why Trenton was stillborn.

By the time Curtis got back to the hospital, Trenton and I had both been cleaned up, and we were ready to spend some time together. Patti and Angie stayed and took more pictures for us, and then Curtis and I spent time alone with Trenton after they left. What a very special time for us! I told Curtis I was so proud of Trenton, he was such a fighter. After hearing all of the statistics on Trisomy 18, I really never thought we would make it that far (36 weeks). I am so grateful for the time I got to have him safe inside me.

As we were being dismissed from the hospital two days later, I asked the nurse if she knew if Trenton was still there. She told me she thought he was downstairs in the morgue. I just cried when she said that, and she immediately apologized. I know she didn’t mean to hurt me, and was only speaking the truth, but it just sounded like such a cold answer.

On the way home we stopped by our local newspaper to check on Trenton’s obituary. It was so heartbreaking to read it, I couldn’t help but crying again. We then went to the funeral home. I asked the funeral director if we could see the casket, and cried when he showed it to us. It was beautiful, but so, so, tiny. Patti had told me the casket would look like a treasure chest. She was so right. That’s exactly what it looked like, and that’s exactly what it was. Our final stop before going home was the cemetery, where we saw the stake by Trenton’s plot. And, of course, I cried again. Just when I thought I couldn’t possibly have any more tears, more would start to flow.

Later that night Curtis, Kelsey, and I went to the funeral home to see Trenton one last time. Seeing Trenton inside the tiny casket was so overwhelming. He was dressed in the little blue outfit (doll clothes) that I had bought him. We took more pictures, and then I held my Trenton for the last time. It was kind of scary because he was so fragile, but I just had to hold and cuddle him. I didn’t want to regret not loving him the last time I could. It was so hard, but so rewarding. I gently placed Trenron back in his casket, along with the little stuffed lamb I had bought just for him. I told him to have fun with Chris and Jamie (the babies I miscarried), that I loved him, and that I would see him later. I wanted to be the last one to hold him, and the one to put him in his casket.

Trenton’s graveside service was at 9:30 the next morning; over 100 people were there. It was overwhelming to us to see so many people there to honor Trenton! Our pastor did an excellent job, the service was incredible. It was evangelical and several of our non-churched friends heard about the Good News of Jesus Christ. So many people commented on how beautiful the service was, but then, we’d had lots of time to think about what we wanted and make plans.

After a brunch at our church, Kelsey and I went back to the cemetery; of course we were both in tears. Our emotions were so raw, and it didn’t seem real that we had buried our little Trenton that morning. While standing looking at his grave, I told Kelsey it really made me want to go to Heaven. She was very quiet for a while, and then said, “But Mom! We need you here!” I told her I didn’t mean I was ready to go to Heaven for good, I just wanted to go see what Chris, Jamie, and Trenton were doing, to “check on my little ones”.

The cemetery is within walking distance from our home. I know that Trenton’s immortal soul is really in Heaven, but it is very comforting to have his grave so close to us. I now either walk or drive by every day, and have a new route when I’m driving home. Every time I go by Trenton’s grave, I whisper to him that I love him.

Three weeks after Trenton was born, we picked out his grave marker. It says “Trenton Matthew Brown, June 22, 2002. Safe and perfect in arms of Jesus”. It means a lot to me to have that done, since I couldn’t stand Trenton just having the small marker from the funeral home. He deserved so much better.

It has been three months since Trenton was born and why we lost 2 babies in less than one year, we know that His will and His timing are perfect. It doesn’t seem real that all this has happened. We know that God has performed the mighty healing we so fervently prayed for; only He healed Trenton’s body in Heaven, not on earth.

I still get teary-eyed when I think about or talk about Trenton. The tears are of sorrow for myself, but also tears of joy for Trenton. I now realize what a lucky little boy Trenton was, for he went straight from the safety and warmth of my womb, to the safety and warmth of the arms of Jesus! He never knew any pain or suffering. Trenton Matthew was truly a gift from Heaven. He fit the meaning of his name perfectly, for during this time with him we truly received an “outpouring of gifts from God”. We are so, so thankful for him! God continually showed Himself to us during our pregnancy and delivery. He always was, and always will be here for us! He is always faithful!

In closing, we wanted to share the answers to our questions to God. God is in control and He has a purpose for suffering. We witnessed so many times God providing help or providentially providing an event, just to remind us that He was there, along with us. God is good, and from the eternal prospective; the outcome of suffering is good. Suffering is essential, but temporary. It is used for us to persevere, and make us “fit” for the Kingdom of God, to spread the love of God, to advance the Kingdom of God, and to tangibly experience the intimacy of our Lord.

Psalm 139:13-16 – For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

Exodus 4:11 – The Lord said to him, “Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord?”
Romans 9:20-21 – But who are you, O man, to talk back to God? “Shall what is formed say to him who formed it, “Why did you make me like this?”” Does not the potter have the right to make out of the same lump of clay some pottery for noble purposes and some for common use?

1 Corinthians 1:27 – But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.
Proverbs 17:3 – The refining pot is for silver and the furnace for gold, but the Lord tests the heart.

Romans 5:3-5: … we also exalt in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.

C.S. Lewis said: “It is during such rough periods, … that man is growing into the sort of creature God wants him to be. Hence the prayers offered in the state of dryness are those which please Him best. … Satan’s cause is never more in danger than when a human, no longer desiring, but still intending, to do God’s will, looks round upon a universe from which every trace of Him seems to have vanished, and asks why he has been forsaken, and still obeys.” Jesus is the ultimate example of this, in obedience, He chose to stay and suffer alone, “forsaken”.

We, Curtis and Janet, honestly believe that we have co-created an eternal soul. Trenton’s time on earth was momentary. He has preceded us to Heaven where his other siblings, Chris and Jamie, welcomed him. We now have three beautiful children waiting for us, to greet us and show us our real home.

I have a plaque that says, “There Is No Greater Joy Than To Know That My Children Walk With The Lord”. I got this after our two older children accepted Jesus as their Lord and Savior, but now it has a two-fold meaning for me, knowing three of our children are already in Heaven, walking with our Lord. Missing out on having Trenton with us here on earth pales to the time we will have with him in Heaven with God.

My Trenton Matthew, I’m so thankful for the time that I was able to carry you, and I’m also very grateful that God chose me to be your Mommy. I carried you beneath my heart for 36 weeks, I’ll carry you in my heart forever.

I’m calling this time with you our “bittersweet journey”. It has been very bitter just knowing that we most likely wouldn’t have you on this earth with us for very long. But, God has also made it a very sweet time for us, knowing that He chose to use our son for some very special plan or purpose. You were such a fighter during this journey, and now you are the winner! Your mission on earth is now accomplished. Well done, Trenton! I’m so very proud of you!

I look forward to the day that I’ll see and hold you again, only the next time will be in Heaven. Until the rest of our family gets there, have fun with Chris and Jamie. I know they are so glad that you are there with them now, and each of you is safe and perfect in the arms of Jesus.

I love you and miss you,
Mommy

How can a life that was lived in 6 months and 25 days take so many words to describe? Although Michelle’s life was never easy, it was filled with love and faith. I was 41 years old when we discovered I was pregnant with our fifth child. After the initial shock and with the steadfast support of my husband, I grew in excitement at the prospect of adding another child to our noisy and fun family. During a routine sonogram in my seventh month, my family doctor discovered excess amniotic fluid and some unusual things so I was sent to a specialist for a level II sonogram. There I was first told that there was a good chance that my baby would not be born alive. My heart almost stopped beating and I could barely hear anything he said after that as my mind shouted “No!” The doctor did mention Trisomy 18 but all I caught was Trisomy and it was never brought up again. When I did look up Trisomy a month later, I found T21 Down’s Syndrome so I thought I knew what to expect. They encouraged an amniocentesis but I refused.

With many friends and family members praying for us, I woke up the next day with a sense of calm and strength. I knew that God would guide us through whatever lay ahead.

The rest of the pregnancy was fairly normal, except that I was very uncomfortable because my belly was huge with all that excess amniotic fluid. We visited the perinatologist a few more times for more ultrasounds but no one ever mentioned T18 again. The baby was small so my very optimistic family doctor agreed with me that we wouldn’t deliver her early and give the baby some extra time to develop so we scheduled to be induced at almost 42 weeks.

During the contractions, the baby started showing signs of distress, so an emergency C-Section was ordered. This wasn’t unexpected but traumatic never the less. At 2 p.m. on April 1, 2003, Michelle Rose Ekis was born. She was 5 lbs. 9 oz. and 18 1/4 inches long. She needed a little assistance to get started breathing but she was alert within a few minutes. She was put in the NICU with some oxygen to get her levels up but by the next day, Michelle was only on forced air.

Then the next day, she was breathing room air.

We received the devastating news that Michelle had T18, the next day while in the hospital. I was an emotional wreck at first and I could not hold or look at Michelle without bursting into tears.

But slowly I realized that God had given me a beautiful child to love and take care of. Only He knew the length of her life and only He knew what Michelle could do. And I realized that this was true of all my children. It just took a child as special as Michelle to remind us that tomorrow is never guaranteed with anyone.

So after a three-week-stay in the NICU, we took Michelle home with us. We had learned to feed her with an NG tube since she couldn’t learn to nurse and she tired easily while drinking a bottle. We were set up with home healthcare nurse, counselor, and volunteers from a pediatric hospice and occupational therapy from the local children’s services. These women were my angels. Janet, the nurse, accompanied us to all of Michelle’s doctor appointments. The volunteers gave me some needed breaks and loved all my children when they needed the extra love. They all comforted me when we found out that Michelle did have an 8 mm VSD in her heart and they gave us information as my husband and I made many decisions on Michelle’s care.

Michelle grew and life became “normal”. We were a family. We took Michelle to church, the kid’s soccer games, trips to the park and events at school. We explained to our children that Michelle had T18 and that was just the way she was born. We told them that although babies with T18 usually don’t live long, we don’t know what God has planned for Michelle. So we will just love her and enjoy her for however long she is with us.

We celebrated whenever we could and everyone loved to hold Michelle. Michelle would smile and giggle at the antics of her sisters and brothers. She loved to be talked to and was almost ready to roll over. Evenings were hard because she never wanted to fall asleep and during the day, she spent a lot of time being fed through her NG tube so she would not throw up. But at 6 months, we were beginning to think Michelle might be one of the children to make it past one year.

We threw a huge party for Michelle’s 6-month birthday to celebrate our little daughter and to thank everyone who had helped us through so many prayers, dinners, transportation of children to events, childcare and all the other ways our friends, neighbors and church members helped us out. I am still touched by how many people were involved in Michelle’s life and touched by our miracle.

One week later, after a brief hospital stay for an infection, Michelle’s heart and lungs gave out. She died quietly and peacefully in her sleep while I slept in the bed next to her. I woke up at 1:30a.m. and realized Michelle had gone to our eternal home and our Father’s loving arms.

We miss her very much. We have faith that we will be reunited again in heaven. God gave us such a wonderful gift of 6 months and 25 days with Michelle. She has touched so many lives and changed our family in ways that we are still discovering. She was so beautiful. Her smile would light up her whole face and we were stopped where ever we went. She made so many people think about the gift of their children. She didn’t “do” anything. She just loved and was loved.

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”
Mother Teresa

Jeff and I met in Kansas City, MO in August of 1999 where we were attending Midwestern Baptist Theological Seminary. We married 9 months later in May of 2000 and Jeff continued studying for a Masters degree in church music while I worked at the seminary library.

It wasn’t until February of 2002 that we found out we were expecting our first child and were of course overjoyed at the thought of having a baby. Things took a different turn for us, though, as eight weeks later on April 28PthP I miscarried. It was at that time we thought nothing could possibly be worse than losing a little one in such a way and we struggled through that time, but all the while hoping that the Lord would bless us with a baby. In the few months following, Jeff and I found out from our doctor that we would not be able to get pregnant on our own. He had told us that if and when we were ready to get pregnant, that we would have to take “5 little pills” to do the trick—but with a risk of multiple births. We continued to pray for a baby and Jeff and I remained content to wait to see what God would do—and sure enough, in early November 2002 we were delighted in discovering that we were expecting our second baby and we would be due in July 2003.

As we passed the fourth month, we breathed a sigh of relief that the risk of miscarrying was no longer a threat and we looked forward with great expectation of the joy of being pregnant and all the experiences that go with it. On February 11, 2003, my 19PthP week of pregnancy, Jeff and I brought our videotape with us to tape our first viewing of our baby by sonogram. We were so excited to see the hands and feet moving, seeing the fingers and toes, (Jeff was especially relieved to see fingers since he was born with only his pinkys and thumbs on both hands) and the sonogram nurse chatted with us good-naturedly and as we looked at the baby’s body, everything seemed fine. It wasn’t until we got a view of our baby’s head that our nurse suddenly became very quiet. We figured she was concentrating on the image since she was taking circumference measurements to see the gestational age. But, after a prolonged period of time of being silent, we gradually became alarmed at the nurse’s body language…she saw something wrong, but could not diagnose or let us know what she had seen—it was up to the doctor to tell us.

We were sent to a nearby room to wait for my doctor to complete our exam. We finally knew what people had talked about when they were waiting with dread for results of a test—possibly for cancer or a terminal illness—and we were waiting to hear the news of our baby. Jeff and I kept thinking, “surely nothing could be wrong this time since we’ve already lost a baby last year…surely God knows that we’ve been patient and that we could not bear it if something was terribly wrong again.” As all kinds of thoughts flooded us, my doctor came in with a look of disappointment on his face and placed a hand on my knee and looked at me with the words “the sonogram was not good—there is something wrong with your baby.” Our hearts were completely broken as we listened to his words explaining that from the sonogram he and another doctor and nurse all saw that the baby’s head did not close completely and that a large sac was growing out the back of the head where there was brain matter inside. Our baby was diagnosed as having a posterior encephalocele, which means a sac growing behind the head as a result of the failure of the head closing, in which as the brain grows, parts of the brain if not all of it, can grow outside the baby’s head into the sac.

Since this type of diagnosis is inoperable both inside the womb or to correct it after birth, my doctor explained all our “options” in which we could “interrupt” the pregnancy (abortion) or we could continue carrying the baby. If we continued carrying the baby, we were told that we could go into premature labor, or the baby may die in the womb before birth, that the baby would not survive labor or that if it did survive labor and delivery, it would surely die soon after birth within minutes to hours. We knew what our answer was going to be—both Jeff and I knew we would carry this baby no matter what. After all, we had just seen the sonogram and watched our little one moving and living—we couldn’t end or terminate something that we knew was given to us—no matter how painful this was going to be. After making our decision to continue to carry, I was whisked away back into the sonogram room to undergo an amniocentesis to see if this was a chromosomal defect and to see what the sex of the baby would be.

Two weeks later we found out that there were no chromosomal abnormalities and that we were having a baby girl. We knew without a doubt that the Lord had simply made her exactly the way He meant for her to be and we began the journey of faith that the Lord would take care of us and this baby and would give us the strength to get through the next few months. We began to pray and knew this was much bigger than we were—so we set up an email prayer chain and the word began to spread about our situation. Never did we realize later how many lives our baby girl would touch and the prayers that would pour out of people’s hearts for her.

We decided to go ahead and name our baby girl and so we gave her the name Haley Faith. She continued to grow and her heartbeat was normal, though with each sonogram, we could see her body growth beginning to slow down and her head was getting smaller as the sac continued to grow with more brain tissue also growing within the sac. Every doctor’s appointment we heard the same news over and over that she would not survive and should be realistic about arrangements for her passing.

Throughout the last months Jeff and I felt robbed of a lot of the joy that comes with pregnancy— Lamaze classes, registering for baby gifts, the baby showers and the joyful pregnancy conversations with people. Instead, we talked of her condition, funeral arrangements or memorial services, and how to memorialize Haley in a special way. We still remained hopeful that Haley would be our miracle baby—that she would survive and we could bring her home. I began to pray in my heart for the special things that I would like when I give birth to her—like praying that I would be able to see her alive and look into her face and her eyes and hear her cry and the snuggle sounds and to be able to nurse her. Jeff hoped for some of the same things and also that she might grasp his finger. Ultimately, we wanted her to know we loved her and gave her every chance possible to survive.

Our ninth month arrived and I was still going strong in our pregnancy. Our weekly email updates had spread to thousands of people by now all over the U.S. and around the world and we were receiving cards, gifts and emails from people we had never met that were praying for Haley. My doctor had given up on giving any kind of guesses as to how Haley would arrive—I think he was as amazed as we were that she had survived this long, and yet, it wasn’t so surprising since she was living off of my body. The question was how and if she would survive on her own and what parts of her brain would be intact. During my ninth month, I made a phone call to “Alexandra’s House” a special organization that helps families deal with special babies like ours and deal with the defects, illness or the passing of their little ones.

It was through this organization we were placed in contact with a specialist from Children’s Mercy Hospital who stepped into our lives to help us understand Haley’s condition and would help us with the care she might need. He said it the best of any of my doctors: “Haley has a special time-line and we need to help her live the life that she’s been created to live.” But, like every doctor we had spoken with, he could only guess as to what her condition would be—we were all waiting with great expectation of her birth to see really what we were dealing with.

The decision was made to induce labor July 8PthP, 2003—right on my due date. The labor and delivery was fortunately a fairly easy one and Haley arrived very quickly at exactly 1:00pm July 9, 2003 weighing 6 lbs 6 oz. and 18” long. She survived the labor and as they laid her on my chest, we heard her cry and it was music to our ears. She reached out for Jeff’s finger and grasped it firmly and opened her eyes and looked up at us. It was more amazing than we had ever expected. It was painful to look at the back of her head and see the sac. It had ruptured on arrival and we knew that our time was precious since they would need to bandage the area and get her to Children’s Mercy Hospital as soon as possible to begin antibiotics in case infection would set in. We got to be with her for about 4-5 hours and in that time all our family was able to hold her and she was given back to me where she was able to nurse for the first time. As she was whisked away by the transport team to CMH, Jeff and I had a special peace that even if we never saw her alive from that day on, we were thankful the Lord had answered all our prayers for that day and had given us our heart’s desires.

She went through surgery the next day to remove the sac and all throughout our time talking with the doctors and specialists and neurosurgeons—all were not certain what to guess for the future for Haley. They all are watching and learning—just like we are, but doubt she will live very long.

Haley continues to live today! She came home just 3 days after her surgery and began gaining weight and growing in length and showing signs of a normal newborn. She has all her reflexes, she can hear and see and shows signs of purposeful movement. The future is still uncertain and the doctors are still in awe as we are—but one thing is for certain, we have our miracle baby and are grateful for each day we have her. She is a gift from the Lord to bring honor and glory to Him alone and she is simply “on loan” to us until He calls her “home” and gives her a new body—and in the meantime it is an honor to care for our little Haley Faith.