The Second Ultrasound

We went to the twenty-two week check-up prepared to go straight to delivery if the baby’s heartbeat had stopped. My mom had purchased her plane ticket, packed her bags, and arranged her schedule so she could head out that day. At that point Leah wasn’t kicking yet, so the only time I felt movement was when she turned or rolled over, and it was sometimes hard to tell if she was moving at all. I often didn’t feel her for a day or two, so I was not always sure if she was still alive. That morning I woke up, after two weeks of hoping for resolution, and realized I wasn’t ready for her to be gone. Jeff agreed. As much as I wanted an easy solution, I wanted to keep my baby more, even if it was only for a little while longer.

The appointment began with an ultrasound, and it immediately revealed that not only did Leah still have a heartbeat, but it was still strong and well within the normal range. I was oddly proud. What a fighter. The specialist found her kidneys, which was a huge relief because missing kidneys entirely can indicate an inherited kidney problem, and typically points to an undiagnosed kidney problem in one of the parents. The specialist confirmed that Leah’s legs as well as both her arms were very small (about the size they should be at 12 weeks). The doctor and the genetic counselor explained that based on the shortness all four limbs and the ratio of her chest to her belly, her kidney failure and other problems were most likely caused by a lethal skeletal dysplasia. Basically, Leah’s chest was so small that her normal-sized heart took up nearly the whole space, thereby leaving no room for her lungs to develop. This change in diagnosis did not mean a change in outcome. Either the absence of amniotic fluid or the small size of Leah’s chest alone would be lethal. That Leah had both problems only gave the prognosis more certainty. In our meeting afterwards we learned about the lethal skeletal dysplasias, which are most commonly caused by an autosomal dominant gene, meaning that a mutation randomly occurs at conception. Although they couldn’t be sure what type of dysplasia Leah had, nothing in the ultrasound indicated one of the inherited (autosomal recessive) dysplasias.

Unfortunately the ultrasound did reveal another problem: a build-up of fluid in her abdomen called hydrops fetalis. They believed that this was caused by Leah’s system working improperly, which made her unable to manage fluid. This problem is progressive, and leads to heart failure. Once again they told us that the pregnancy could not reach full term, and that a still-birth would occur if we did not take any action. Our options were to deliver, have a termination, or come in for bi-weekly heartbeat checks until "the fetal demise." They advised that the window of opportunity was closing soon, since in Illinois terminations are illegal after 24 weeks. We had already decided that we would not terminate ever, nor deliver prior to 24 weeks, and we let them know that once again.

Neither of us felt very understood by our doctors. I got the distinct impression that the first doctor thought we were a bit deluded about our situation (which we were not, we understood and accepted the facts very quickly) because we wanted to continue to carry our child. The second doctor was more understanding, but was worried about how hung up we were on not having an abortion. However, we knew that if we induced at all it would only be for the chance to hold our child and comfort it while it passed away, something that would be next to impossible at 20 to 24 weeks. Delivery prior to 24 weeks was therefore not worth considering.

We were very concerned about the well-being of our baby, and when we met with the second specialist we discussed the comfort of the baby. He assured us that she would experience no discomfort in utero, and if she passed away due to the hydrops, as they suspected would be the case, it would be very peaceful. He also told us that he had witnessed babies with inadequate lungs after birth, and that in these cases they fall asleep from the lack of oxygen and slip into a coma, and that it was always very peaceful. They are able to fill what little lungs they have with air, so they aren’t gasping and flailing or anything like that.

Jeff and I began to debate our dilemma. Our desire as parents was to take the chance to spend a little time with our child outside of the womb. Jeff especially coveted that time, because he did not have a physical connection with out baby the way I did, and he longed for one. As a wife, I wanted that for him more than anything, but as a mother I was concerned that we do the absolute best thing for our child. We were both concerned that maybe we were being selfish to take a chance with our child’s life for the opportunity to hold it. A friend pointed out to me that although we couldn’t know, we should think about the possible benefit that delivery might have for our child. We wanted the chance to cuddle, hold, and talk to our baby, which we knew would be positive for us, but that being cuddled and loved might also be good for our baby. One thing that nagged at us was the feeling that we didn’t have enough information to make a decision. We had done tons of research, and found very little that indicated to us when the best time to deliver would be. We felt pressed to make a decision by the doctor’s pessimism about carrying to term, but had no idea when our time would run out.

From what we could see from grief websites and blogs, babies with Potter’s Syndrome could miscarry early, or they could live to term. It seemed that many people delivered between 32 to 36 weeks, due to medical reasons that affected the mother. We couldn’t find anything to tell us when to expect stillbirth due to the developing hydrops, which left us very frustrated. If we were going to deliver, it would only be so that we could spend time with our child. We had no desire to cut our baby’s life short prematurely if we could not offer it a chance at life outside the womb. We figured the best way to do that would be to carry as long as possible so that the baby would be strong enough and big enough to survive labor, but we also worried that if we waited too long we would miss our chance.

After another week and a half of agonizing over these questions, Jeff called the genetic counselor to ask if there was anyway to know what the timeline would be for our pregnancy. She told us that based on the last ultrasound, she thought we had some time left, but that with hydrops it was difficult to tell, because she had known of babies dying at 16 weeks from hydrops, or lasting into the 30s. Jeff asked if it would be wise to have another ultrasound when we came in for the 24 week check-up to measure the fluid accumulation since the last ultrasound. She said that might help give some idea of a timeline and she offered to schedule us for another ultrasound. From the two measurements they could assess the progress and rapidity of the fluid accumulation. From there they could offer us a speculative timeline of the baby’s health and the pregnancy. We were elated. First, we were very excited to hear that we might have more time, which was a huge turnaround from those first few weeks. Second, we were glad to have more information on which to base our decision. We felt that having a timeline would allow us to chose a date to deliver that would both sustain our child in the womb as long as possible and allow us to have some time with her after delivery. Hearing that we weren’t expected to have an imminent stillbirth (a cloud which had been hanging over us since the very first ultrasound) was a huge weight off of our shoulders. I unpacked my hospital bag.

Back to Normal???

Being pregnant is physically very draining, and so is giving birth. The first trimester you feel like every bit of energy you possess is being sucked out of you, and it is impossible to replenish that energy because food is disgusting and everything smells bad, except maybe grilled cheese on sourdough. The second trimester isn’t too bad, although it is still hard to sleep, you get tired really easily, and your legs hurt. I don’t know about the third trimester, but all signs point to it being the worst. I don’t think I need to explain why giving birth is physically traumatic, and if you don’t know about it you probably don’t want to.

Now, because Leah was born early I got to skip most of the late pregnancy problems. My biggest issue was pain in my lower legs because I inherited horrible veins. I got to wear compression stockings for that last month. Compression stockings are no picnic in June in Chicago. Plus, I looked like an old lady. Giving birth is also much easier on your body when the baby is small. Leah was a whopping one pound, six ounces. She was big for 25 weeks, but not big by any normal standards. She was delivered breach, which made her delivery more difficult that it would have been if she were head down, but it was not a cause for concern. The point of all this is that while I did go through many of the less pleasant aspects of pregnancy and delivery, it was not nearly as physically wearing as it might have been. As a result I got to go for my post-partum check up after only four weeks, instead of the standard six.

I really wasn’t looking forward to the appointment. Giving birth requires a huge invasion of privacy, and I was not looking forward to being poked and prodded after only one month. Little did I know that the examination would be the easiest part.

I had the earliest appointment of the day, because I wisely called far in advance to make sure I wouldn’t have to sit in the waiting room with a bunch of happy pregnant women, or worse, women with newborn babies. Sitting there with all the pregnancy and parenting magazines was bearable; I had my iPod. Even the weigh-in wasn’t too bad, although I certainly didn’t need to be reminded that I am still five pounds over my pre-pregnancy weight since none of my clothes fit. Nevertheless, this was not upsetting. When my doctor came in looking surprised to see me and asked what had happened, then, that was traumatic.

My Ob-gyn is part of a rotating practice. I hadn’t seen her since I was about 12 weeks along, because I had been meeting the other two Obs at my monthly appointments. On the day of our first ultrasound one of the other doctors was on-call. My primary Ob knew that we had the amniotic fluid problem, since she had called to talk to me after the original diagnosis. However, after that diagnosis we had to transfer to a high-risk specialist for continued care. We also had to switch hospitals. Apparently, whoever was in charge of my care at the other hospital hadn’t sent any information back to my Ob, even though my care had been transferred back. Thanks HMOs and paperwork based records! My Ob had no idea what had happened, and I had to recount the whole story, which I was completely unprepared for. That was very difficult, especially since I was caught completely off guard. I had prepared myself to deal with the appointment physically, but not emotionally.

The physical exam ended up being the least of my worries. In fact, the results were probably the hardest thing to deal with, and again that was on an emotional front. Everything was completely back to normal. It is as though the pregnancy never existed. I felt betrayed by my body. How can my heart be so scarred and my body carry no sign of this pain? I’m sure if some fancy CSI doctor cut me open we could find proof of the pregnancy, but looking from the outside you can’t tell. I realize this is lucky. I would be unhappy if I had stretch marks or a gigantic stretched-out uterus, but in my gut it feels unnatural for my body to be back to normal, when there is no going back for my heart.

The First Ultrasound

On May 20th Jeff and I went in for our twenty-week ultrasound. We had scheduled an early appointment so Jeff could make it to work afterwards, so we got up early and walked to the medical office first thing that day. On the way over we laughed and joked about baby names and whether it would be a boy or a girl. We planned out our list of who to call and in what order, and when we would put it on facebook. We were so excited.

The ultrasound started out fine, as the technician explained some of the measurements as she took them, and we could see on the screen the baby’s head, spine, and beating heart. Jeff used our camera to record it so we could share the moment with the proud but geographically distant grandparents. But after a few minutes it became apparent that something was wrong. The technician appeared frustrated and began moving the ultrasound wand around very quickly, and typing into her computer. She then announced that she had finished the ultrasound. I asked if it was a girl or a boy, and she told me it was too early to tell. I knew that wasn’t true. I asked if the baby had arms and legs, and she told me again that it was too early to tell, so we would have to come back later for a follow-up when the baby had grown. I knew something was horribly wrong. She asked if I had noticed any leaking fluid, because my fluid seemed low. Then she walked us out.

I began to panic as soon as we hit the elevator. I started crying so hard I had trouble catching my breath, and continued to sob during the entirety of our walk home. When we reached our apartment Jeff called my doctor, explained the situation and asked to speak to someone. At that point we still hoped that maybe the problem lay with our technician, or the machine. The doctor promised to get back to us after she had seen the pictures. Jeff went to work, and I tried to concentrate on my research, but ended up Googling "low amniotic fluid" instead. The results were heartbreaking. I got a call around eleven from one of my OBs. She told me she was sorry, but something was wrong, and she was very concerned. She had already scheduled an appointment for us with a high-risk specialist that afternoon. I called Jeff and asked him to come home, then got back in bed with a box of Kleenex. I knew our baby wasn’t going to live.

I begged God to let my baby live, and I told him that the thing I wanted most of all was for it to grab my finger. I don’t know why I wanted that so badly, but all I could think of was how much I wanted the baby’s little fingers to grab onto mine. I didn’t even know if our baby had fingers. When Jeff got home he came to our room, and we spent the afternoon holding on to each other, crying, praying, and talking. Jeff made me lunch, and we sat in bed and ate. I noticed our bottom sheet had torn. It seemed fitting for the day.

When the time came we walked back to the office. The contrast with that morning’s first walk was vast. This time the news wouldn’t be exciting, nothing fun to call and share with our relatives and friends. We sat waiting, for quite a long time, in the office reception area. I felt suffocated by the walls of pictures of happy and healthy babies and birth announcements, so all I could do was look straight in front of me at the receptionist’s desk, or the wall above, where a crucifix hung. I focused on that cross and remembered that God understood my pain above all, since he too gave up his child. It was something, at least.

Finally we went back to meet with the specialist, Dr. G, who had come from another hospital to take a look. He had reviewed our morning ultrasound, and then he performed another one personally. As he moved the wand over my slimy belly and the picture showed up on the screen, he explained what he should see, and what was missing. He told us that there was no amniotic fluid inside of me, which meant that either I had experienced a leak or that the baby’s kidneys were not functioning. Without amniotic fluid getting a clear picture on the ultrasound is difficult, but from what he could see the kidneys had not developed properly, if they were present at all. The baby’s head and spine appeared normal, but the legs were measuring very small. He thought this was possibly caused by the lack of fluid, but said that it was too hard to tell on the machine he was using. The preliminary diagnosis he gave us was Renal Agenesis (that is, failure for the kidneys to develop), which caused Oligohydramnios (lack of fluid) leading to something called Potter’s Syndrome. He told us that our baby had problems incompatible with life.

Because the baby did not have functional kidneys, the only fluid visible was in the baby’s stomach. There was no fluid surrounding the baby, and no fluid in the baby’s bladder. Amniotic fluid surrounding the baby is crucial for lung development, so without fluid the baby could not have functioning lungs. He told us that our baby could not make it to term as it would be still-born sometime prior. If we chose to deliver early, the baby probably wouldn’t survive delivery, and if it did it would die within hours. He offered to schedule a termination or delivery sometime the next day or the day after. We explained that we would not be terminating under any circumstances; he told us to think about it. Our other options were to carry until still-birth or deliver at some other point. He offered to schedule us for another ultrasound using a better machine at the high-risk center at his hospital in another two weeks.

We knew that we were not going to make any decisions without a second opinion and the best diagnostic assessment possible, and lots of time to weigh our options and pray. We also knew there was no way we would deliver prior to 24 weeks, the standard time when doctors consider babies able to survive labor and viable outside the womb. We would not deliver if no chance of survival existed.

I had been planning a trip home for my mom’s college graduation, so I asked if I could still travel. I was assured that I could not harm the baby by flying, and that it would probably be healthiest for me to keep any plans that I had made as long as I felt up to doing so. Both my OB and the specialist agreed that a trip and its accompanying distractions would be the best thing for me.

After that second appointment we had to make some very painful phone calls. I really think that one of the most difficult things about losing a baby, apart from the actual loss of your child, is having to tell people about it over and over. When someone comes up to you with a smile on their face to ask how the baby is doing, or to make a funny comment about your ever growing belly, it is so difficult to explain that there won’t be a happy ending. Then you see their pain, all over their face, because they are sad for you, and they feel even worse because they know they have caused you distress by bringing it up, and it just makes the loss that much harder to bear. I almost never had a problem talking about what was going on with me or Leah, as long as I didn’t have to break the news that she wouldn’t live.

We notified our family and a friend we could rely on to spread the news for us. Then we picked up our favorite comfort food (bacon cheeseburgers) and waited for some friends to come over to pray and grieve with us. At that point, I was praying that God would take Leah soon, so that we would be spared making tough decisions and the burden of carrying a child who could not survive, and whose life we would not likely ever experience outside of the womb. I thought that I could make it two more weeks, until the next appointment and heartbeat check, but didn’t know if I could take it after that.

I went home to process my grief and be cared for by my family. I cried almost every morning when I woke up, and during the day if I had to tell the news to someone. This only happened rarely because I had family on watch duty ready to pull me aside and explain the situation outside of my presence. Otherwise I was able to talk about it fairly well. I could easily discuss what was happening if I stuck to the facts. At that point I felt disconnected from Leah. I had been worried about my low weight gain during the whole of the pregnancy and had felt like there was maybe something wrong early on. I also had worried that I didn’t feel as attached as I thought I should have. I do wonder if my hormones were a little off, if my body knew something wasn’t quite right. In any case, at that point I felt like I could manage. After all, I could have another baby. I loved the baby I had and I wanted to keep it, but I accepted that I wouldn’t be able to, and focused on the future to get myself through.

I figured that every condition has a statistic, and this time Jeff and I got the bum end of the statistic, we were the one in the 10,000 or 40,000 or 60,000 (depending on what they diagnosed her with). Somebody had to be that one. We were that one. Certainly I asked why, but mostly I asked why not? I certainly wouldn’t wish this suffering on anyone else, and Jeff and I had a great support system…so if somebody had to go through this heart-wrenching pain, why not us?

Letter to Leah

Four weeks ago we held a service for Leah graveside. We asked our dear friend Melody Vogel to share something about Leah at her memorial service. She had stayed with us while we waited at the hospital, made food and coffee runs for everyone, coordinated update emails, and just plain made our lives easier. Leah was blessed to be held and loved by Melody during her short life.

June, 28, 2008

Dear Leah,

I have been waiting for you for a long time. When I found out you were coming I was so excited! Well, first I had to call and confirm that the pregnancy announcement wasn’t some sort of joke. Only your parents would choose April Fool’s Day to announce to the world that they are expecting. I immediately went into baby mode; thinking of names, buying funny baby gifts and pestering your parents with all sorts of questions. I was counting the days until I would meet you!

When we found out that you were sick, I have to admit, I stopped thinking about you. All I could think about was your Mom and Dad and how mad I was that God would let this happen to them. I sat with them that first night, praying silently because every time I opened my mouth I just began to cry. Your Mom and Dad were so amazingly faithful in the way that they loved you. They protected you when doctor’s thought it was hopeless; they fought for you when others didn’t understand.

I have to admit that, at times, I didn’t understand. I prayed for your life because I knew that it meant so much to your parents, but I didn’t really believe that a life of a few minutes could really change anything. Oh how wrong I was Leah!

The day before you were born was tough. We didn’t know what to say or how to react. It felt like we would be waiting forever. I went home that night and prayed that God would keep you safe but the only thing on my mind was letting the pain end for your parents. Once again, I didn’t take you into account.

The next morning I woke up without an alarm clock, with a smile on my face. If you had more time to get to know me you would understand that that is a miracle in itself! I got to the hospital and felt so joyful. I was kind of embarrassed because it seemed so inappropriate. As your Mom & Dad, Grandma’s Mary and Jane, your Uncle Bill and I sat in the hospital we were so nervous. We all passed the time chatting, waiting and watching season two of The Office, very fitting for a little girl who was destined to have such a great sense of humor. We waited, and waited and waited; the all of the sudden, it was time! We left the room and within 15 minutes you were here!

I waited anxiously outside the room to meet you. What would it be like? Would it be sad? What would I say? Every ounce of fear I had went away as soon as the door was opened. Before I could even see inside I heard your Mom say, “Melody, come and meet our daughter!” There was no sadness in her voice, no hint of worry; only love.

When I walked into the room I saw my friends Jeff and Amy, but they looked so different, suddenly they were parents. Your Mom was holding you and whispering beautiful things into your precious little ears. She told you how much she loved you, she said she was so proud that you had fought to be born alive and she marveled at how perfect you were. Your Dad, always the strong silent type, didn’t say much, but he couldn’t take his eyes off you. Even later, as we all had the chance to hold you, he kept a careful watch to be sure that each of us held you just the right way and were careful of your fragile little head. He was such a good daddy protecting his daughter.

The room was quiet. You were so small it felt like talking too loud might accidentally hurt you somehow. But the room was also joyful! We just stared at your tiny feet and hands, thanking God for them. We told you how beautiful you were and none of us could get enough of your soft little cheeks. We had all been so worried about what this moment would be like, but it was pure celebration over the life we were watching you live. We laughed at how you had the tenacity of your Mom, holding onto your life so fiercely. Your Dad and Uncle Bill talked about how you had the heart of your grandfather.

Your Dad gave you the sweetest bath that has ever been given. We teased him as he took his time gently washing every inch of you. And while it may have been a longer bath than usual, we reassured him that he should spend all of the time he wanted gently preparing you to be dressed. He put on your little shirt, which went far past your toes. He wrapped you in the blankets that your Mom had sewn. Earlier in the day we had talked about how soft the inside of the blanket was, but it was no match for the smoothness of your little arms and legs! Oh little Leah, there was never a second in this life when you weren’t loved and adored.

Today we are grieving over what could have been. We are mourning the loss of first words, school plays, heartbreaks, family vacations and finding out all of the little things that make you, you. You would have been funny and kind. You would be a great cook and have the coolest music collection on the block. You probably would have been smarter than me by the time you hit kindergarten. This is why we are crying today Leah.

But you have given me the gift of the joy of your birth. There were so many times when I forgot to think of you, but I promise that will never happen again. You are the only person I know whose entire life, from conception to death has been an act of worship. Every second of your existence has brought glory to God. Meeting you has been the most sacred experience of my life, Leah. I have been to many church services and looked for God in all sorts of places, but I have never seen him as clearly as I did in your face. Even the hospital staff could see that your birth was special.

Thank you so much Leah! Thank you for being strong enough to turn my friends into parents for 40 glorious minutes. I promise that I will do my best to help them as we give God the time and space to heal us. I will tell your future siblings how amazing you were and encourage them to live joyfully. I will pray for them, even if I don’t understand how God is working in their lives. You have taught me that every life is precious to God, no matter how fragile or how short. On a day when I thought I would be filled with sadness and questioning, your presence caused me to say again and again, “Thank You.” And for that, I thank you.

All of My Love,
Melody

Our Prayer for Our Baby

We got pregnant in January. It took us both by surprise, not because we hadn’t intended to get pregnant, but because it all happened so quickly. I suspected the truth before I took the test, since I had felt very unusual, but Jeff remained skeptical. On February first I took the pregnancy test. When I brought the plus sign to Jeff to prove to him my suspicions were correct, we were both pretty stunned. There was definitely an "oh my gosh, what are we doing? moment" as we realized the magnitude of the news. We were so excited, but we decided to keep it our secret until it was confirmed by my OB. We knew that statistically we were on shaky ground, and we didn’t want to tell everyone about a pregnancy if it wasn’t going to work out. So we waited. During this time we prayed for our baby, that God would use his or her life to bring Him glory, first and foremost, no matter what that meant. We asked God to allow our child to know Him. We told God we were willing to accept whatever cost that entailed as parents. Then we prayed for various other things…the baby’s health, its future, I prayed for a girl, and Jeff for a boy (now we know who prays better).

Now, when I prayed these prayers, I envisioned the possibility of having to accept future sorrows. Maybe we would have to endure a period of teenage rebellion before our child sought the Lord. Or perhaps their life would be risked in another country while they worked to serve the poor and spread the gospel, and we would worry consistently for their safety. Maybe our child would have a condition like autism, something I worried about because Jeff is in the sciences. In all these things I viewed the pain as something to come, maybe long-term, but I never considered it out of the ordinary from what many families endure regularly. I never expected to be spared the regular pain of raising a child, dealing with their imperfections, and coping with their struggle for independence. Losing our child never crossed my mind.

After we received Leah’s diagnosis, our prayers changed. We prayed for a miracle, we prayed for comfort and peace, for wisdom in our decision making process, and that our baby would survive labor and have some time to spend with us. But our number one prayer remained the same, that God would use our baby’s life to bring glory to His name.

As I grieved prior to labor, I found so much comfort in knowing that God could still use our baby’s life to glorify Him. I remember telling a friend that even though it felt like we had lost everything, I knew that hadn’t been taken from me. It was the one sliver of hope I had to cling to. Although Leah would never be able to share the gospel, serve her community, raise a family, or really do anything, we knew her existence and our response could point to God’s goodness. We believe that her short life absolutely brought God glory, and it is our ongoing prayer that it continues to do so.

Leah's Life

Leah Veronica Klug arrived at 2:25 pm on June 24, 2008. Her dad cut the cord, and then brought her to me, wrapped in a towel and still wet from delivery. I touched her tummy with my finger and said, “Hey little guy.” Jeff responded, “I don’t think it’s a guy.” I looked down and saw that we had a daughter.

She opened an eye and looked up at us for a second. She moved a little bit, but not much, just a few wiggles. She grabbed my finger, just as I’d hoped. Her skin was so soft. She had her daddy’s ears. I whispered into those ears. I told her how beautiful she was, and how proud I was of her for holding on, how glad I was to have a daughter. I tickled her tummy, admired her pudgy legs and arms, and marveled at her sweet little nose.

We sat, Jeff and me, with our daughter, a little family of three, on that bed. We had some private time together, but we also shared. Leah got to be held by both of her grandmas, her Uncle Bill, and Melody. She spent every second of her life, from the time that the doctor handed her over to Jeff to her last little breath, in the arms of people who loved her. All she ever felt were hugs and kisses, all she ever heard were words of love whispered into her ears.

Leah’s heartbeat stopped sometime between her check at 3 and her check at 3:15. She was born at 2:25, so we think she lived about forty-five minutes. Forty-five triumphant, glorious minutes.

After she passed away she was measured, weighed and printed. She was nine and a half inches long and one pound, six ounces. I was particularly proud of that last number because I worked really hard to gain weight so she would be big and strong.

Jeff gave her a bath. I had been unwilling to waste the precious moments of her life on getting her cleaned up. Jeff spent a very long time washing her delicate skin. The nurses said it was the longest and most careful bath they had ever seen. They offered him a job. He dressed her in her bunny outfit, and wrapped her in the blankets I had made. We took lots of pictures with our baby girl. We captured all of her “looks” with her different blankets.

When we finished we said our goodbyes and my mom carried her away.

Now I Lay Me Down to Sleep

www.nowilaymedowntosleep.org

I cannot say enough good things about this organization. It coordinates families experiencing an infant loss with professional photographers who volunteer their time and considerable talent to memorialize the baby’s life. The photographers also spend a significant amount of time cleaning up the pictures with Photoshop, and put them on a DVD. They do not charge anything for their services or for the resulting pictures.

I worked with three photographers from Now I Lay Me Down to Sleep. David E. Hails worked with me prior to Leah’s birth answering countless questions and coordinating our session. Deanna Mandarino was the lead photographer on our session. Joseph Pizzo, who was in training at the time, also photographed us.

Deanna and Joe were amazing. They sat at the hospital for more than half the day waiting for me to deliver. The nurses called them to come in around 6:30 am, when it was decided that I could be delivering anytime. When the doctor was delayed and my delivery was pushed back until 2:00 pm, they waited. They took pictures of us prior to delivery, and, at our request, remained in the room during the delivery so that they could take pictures as soon as Leah was born. Both of them made themselves so inconspicuous that I didn’t even remember they were there. They took amazing pictures capturing the moment when I first saw Leah, for which I will be forever grateful.

After Leah’s birth they stayed to photograph her bath and printing. We had pictures taken with all of the family members who came to the hospital, and of course with Jeff and me. They were so patient with us, taking picture after picture with Leah in all of her different blankets, and with many different people. In the end, both of them gave up their entire day to give us the precious gift of beautiful pictures of our daughter.

Deanna went the extra mile for us, providing us with pictures to use at the funeral within days of our session. Even though she must have been very behind in her regular work from spending the entire day at the hospital, she chose and digitally cleaned up four photos for us. Having photos of Leah to share at her service meant a great deal to us, and it gave our friends the opportunity to see the beautiful little girl they came to mourn with us.

Now I Lay Me Down to Sleep has photographers nationwide. Their website also provides resources for grieving families, including links to other helpful organizations, forums to answer important questions, and suggested reading material.