Maddux

4 February 2005 – 10 February 2005

Maddux Achilles Haggard was born to Cheryl and Mike Haggard in February 2005. He lived for 7 short days – six months after his death doctors diagnosed Myotubular Myopathy. Maddux’s mother Cheryl Hagggard is the co-founder of the non profit organisation ‘Now I Lay me Down to Sleep’. The organisation believes that being able to introduce art form photography to grieving parents, will help them in their healing process, aims to bring awareness to parents and caregivers of this method of healing and to educate other photographers to the sensitivity and compassion of this topic.

To Maddux, Love, Mommy

February 4th, 2005 Mommy and Daddy gave birth to you by C-section. We all thought you were a big, perfectly healthy baby boy. We named you Maddux Achilles Haggard (your big brother Chase picked out your middle name, after watching the movie ‘Troy’). You were our fourth and last child (a tubal legation would guarantee that). And my only cesarean, due to a breech presentation.

I had wonderful prenatal care, an amniocentesis and several ultrasounds that were to confirm this routine outcome. Mommy remembers her doctor telling us that it sometimes takes babies a little while longer to respond after being delivered by cesarean. That is why after you were born and Daddy told me you weren’t breathing, I really didn’t think too much of it.

I was lying helplessly on that operating table watching everyone work on you. Daddy was standing next to you with this look I will never forget. He was trying not to look or act scared, but I could see it in his eyes. After what seemed like several minutes, an airway was finally established and you were hooked up to a portable respirator. I was able to see you briefly, and kiss you gently on the forehead before you were whisked to the NICU. I told Daddy to go with you, while I was wheeled to recovery. Daddy left you briefly, and came to see me. I was on oxygen at that time, and by the look of terror on his face seeing me, my nurse immediately rushed to him, reassuring him that I was alright. He told me that you still weren’t breathing on your own, and the doctors were with you.

Mommy was taken back to her room about a hour later. Right away, a hospital Chaplain came to see Mommy and Daddy and pray with us. I knew then that something was terribly wrong. Almost as fast, your NICU doctor came to see us. He was asking questions about our family history, my pregnancy and your big brother and sisters. I remember telling him I always thought your pregnancy was different than all the others. I never really felt a lot of strong movement. I remember feeling such a sigh of relief when at aprox 32 weeks, my doctor told me that you were breech, and seemed to be a big baby. No wonder I couldn’t feel you as much! Who could really move in that position, being so big in such a tight space. Your brother and sisters weighed in at 8lb 15oz – 8lb 14oz and 7lb 5oz. You weighed in at 6lb 8oz.

Your doctor seemed to think you might have something called Spinal Muscular Atrophy. This disease can present itself in 3 stages. The 1st and most severe being presented at birth. The outcome, mostly fatal. Babies with SMA lack muscle tone and have no sucking or swallowing reflex. You had none of these. Your doctor then told me that this disease can present itself later in life also. Now we are scared for you and your brother and sisters.

The next couple of hours were a blur. Daddy wheeled me to the NICU to see you. You had tubes and wires connected all over your little body. But through all the wires, you were just beautiful. You look like your older sister Natalie. I held you immediately. A CAT scan was ordered that day. Blood work was sent to Johns Hopkins and the Mayo clinics. All we could do now was wait for results that could take several days, even weeks. A neurologist came to see us that night after seeing you. He said that your CAT scan seemed to look normal. He didn’t think this was SMA. And that he had seen other babies similar to you ‘pull’ out of this. He gave you better that a 50/50 chance. Hundreds of people were praying for you. It seemed like our prayers were being answered. I started pumping my breast milk. The nurses wanted a supply to start giving you. Right now you were being given your feedings through a tube.

That next day, we sat with you, held you, sang to you and rocked you. I was even able to change your diapers. You still didn’t move. You couldn’t grip our fingers, and you never opened your eyes. But that was ok. Even though you couldn’t hold onto us, we were holding onto you. Mommy and Daddy told you over and over how much we loved you. We stroked your head, kissed your tiny fingers and toes. We whispered in your ears. We cried. We prayed. You are just beautiful. We held you every chance we had.

By Sunday you were able to be weaned off of your respirator. But still had to have a CPAP to help you breathe. We were scared to hold you that day. We sat by your side and held onto you. I remember telling you how proud we were of you and to stay strong. You even seemed to open you eyes, but just half way. I was so elated. That evening, I kissed you good night, went back to my room and tried to sleep. In the middle of the night I woke up and walked down to the NICU to check on you. I was devastated to see you back on your respirator. Your nurse said that you were starting to struggle.

That morning (Monday) you started having seizures. Not your typical body jerking kind. Your doctor explained to us that your motions were like riding a bicycle in slow motion. With the seizures presenting, your doctor ruled out his suspicion of Spinal Muscular Atrophy. The two just didn’t go together. An EKG was ordered that day. Everything seemed to be normal. We were back to not knowing what was causing this. An EEG was then ordered. That seemed to be normal. Your doctor suggested that I go home and get some rest. I had spent three sleepless nights in the hospital and wasn’t eating. How could I leave you, my baby?

A MRI was ordered for Wednesday February 9th. Daddy and Mommy were with you all day. This seemed to be ‘The BIG test’. Your nurse today was Eugene. He was just incredible. He would ‘pinch’ your soft little cheeks and call you ‘his little chipmunk’. He made Mommy and Daddy laugh. It made us feel wonderful, to see Eugene so ‘playful’ with you. A little laughter in such a stressful situation made us feel human again. Now we had to wait for the results.

February 10th is when our world fell apart. Your Doctor had your MRI results. Your doctor told us that your cerebellum seemed to be underdeveloped, controlling your reflex movements and breathing. They don’t know how this happened or why this happened. I clearly remember your doctor saying to us ‘if you can’t breathe, you can’t live’. Daddy and Mommy had always talked about situations like this, and what we would do if faced with the reality. We decided with heavy hearts that we would take you off of your respirator that evening. I remember asking the doctor if we could donate your organs to help other families, and we were told that with out them knowing what the cause of your condition was, we wouldn’t be able to. This hurt us. You had healthy organs, and we were saddened that you couldn’t help others in need.

I remember we were sitting in a little room, reserved for grieving families, across from the NICU. Mommy and Daddy had seen other families in and out of that little room all week. We prayed that the door to that room would never have our name on it. The hospital chaplain was in and out of that room with us. Bringing us information for grieving parents, information for your brother and sisters and even information for your grandmas and grandpas. We remember not wanting any of our family to fly in. Mommy and Daddy just wanted to be alone with you. It was then that we decided that we wanted a photographer to come in and take photos of you. We have so many portraits, in our home of your brother and sisters, and we have ‘original’ artwork by them also. We knew that we wanted your pictures in the middle of all of it.

We remembered seeing in the maternity ward, portraits of healthy, beautiful babies displayed up and down the halls. In the NICU, there were also beauiful portraits of premature babies, sick babies, and babies in incubators. Daddy found their business card and called the company. He told the receptionist he was calling from Presbyterian / St Lukes Hospital and wanted to know if they could take photos of you. He was told that they were available on Sunday February 13th. He told her that Sunday would be too late for you and politely thanked her, starting to hang up. She stopped him, asking what our situation was, and he explained. She told him she would call him back. About 2 hours had passed and we still had not heard back. I begged Daddy to call again, and he did, only to get a voice mail. 2 minutes had not even passed before our phone was ringing. It was the receptionist. They can be at the hospital at 7pm.

Mommy and Daddy then had to tell Chase 11, Anna 8 and Natalie 5 that their baby brother was not going to live and would be going to heaven that night. We went home to pick them up so that they could meet you ‘their baby brother’ for the first time, and so that they could also say their goodbyes. This was extremely heartbreaking for all of us. It was so hard to explain to them what was happening with you, not knowing what was exactly wrong with you. We told them that God needed you in heaven, and that seemed to ease their pain. Mommy and Daddy told them that in heaven, you would be not be sick, that you would be strong and happy, and you would be waiting for us when it was our turn to go to Heaven. Mommy was able to take pictures with my camera of your brother and sisters holding you, kissing you, stroking your tiny fingers and just loving on you. Your nurse that night was Angie and she took the only family picture that we have of all 6 of us together. Chase, Anna and Natalie were so sad, they didn’t want to leave you. It was so heartbreaking to hear their cries. I know it was sad for you, too. After heartbreaking, gut wrenching, tearful goodbyes Daddy took your brother and sisters home to be with grandma. I stayed with you and held onto you as tight as I could.

Before Daddy returned back to us, the photographer (Sandy) had arrived at the hospital. She came into our room and introduced herself not only to me, but to you as well. She told me that she had a son that had spent most of his first year in and out of the hospital. Already, I could see the tears glistening in her eyes. All of her equipment was set up in the ‘little room’ across the hall from the NICU. I remember telling Sandy that I wanted to have pictures of you while you were on your respirator. I then went on to explain to her that I wanted to have pictures of you off of your respirator. I don’t think that at the time Sandy knew what I was asking of her. Daddy thought we would take you off of your respirator and be able to take pictures of you right away, while you were still breathing. I knew in my heart that this couldn’t happen. You were going to be with me. I wouldn’t let you go. Sandy gently said she would wait.

Sandy told us that she was ready, and to take our time. Your nurse, Angie unhooked you from the electrical machines and put you on a portable oxygen tank with a green ‘deflatable’ bag. I carried you gently from your NICU room to the ‘little room’. At the moment, I wasn’t aware of the time and preparation that Sandy had put into setting all of this up. She had brought a black back drop with her that was clipped to the ceiling, picture frames and even a table. The 3 female employees with her, were each holding a light, reflector and a distance reader. A digital screen was set up to display her images from her camera. She had even thought to bring black turtle necks, that Daddy and Mommy each wore. Then, I sat in a rocking chair holding you, my baby. Soft music was playing in the background. Sandy very slowly started taking our photo. Every now and then, she would gently ask Mommy and Daddy to move our heads, tilt our chins or place our hands in a certain position. Angie was hand pumping your oxygen bag the whole time. Mommy was crying, Daddy was crying, Sandy was crying and everyone else in the room was crying. After about 30 minutes, she softly told us she had everything she needed. Sandy and her employees quietly left Mommy and Daddy alone in the room with you and your nurse, Angie.

Through my tears, I told Angie that I wanted to hold you chest to chest. While Mommy was undressing, nurse Angie gave you a pain medication just in case, so you wouldn’t feel any discomfort and started to disconnect you from your life support. There was a little couch in the room and as Mommy lay on it, Daddy brought you over to me and gently laid you on my chest. Daddy then laid next to us. Nurse Angie gently left us alone. Mommy held onto you so tight. I wanted you to be able to feel me holding you. I prayed that you could hear us talking to you. I prayed that you could feel our love for you. I prayed that I could go with you.

We told you that it was ok to let go. Mommy and Daddy were going to be alright. You were going to a glorious place. You would be happy, and healthy. All of your great grandmas would be there to greet you and take care of you, and love you. I remember praying out loud to Jesus to take you, not let you suffer and accept you into His Kingdom. Mommy and Daddy knew you were going to Heaven. We told you over and over again how much we loved you and that we will miss you so much, and that we will all be together again someday. Mommy remembers Daddy saying that he knew you were watching us as angels were taking you to Heaven, and that you could see the love that we were giving to you and to each other. Mommy and Daddy laid there next to each other, holding on to you so tight. You never even took a breath, never moved, and never opened your eyes. You were so peaceful. Mommy and Daddy have never in our lives felt such grief and pain, yet we felt so blessed. Talk about a broken heart … Our beautiful, precious baby boy Maddux was gone. You were gone … This pain is unimaginable …

The Doctor gently came back into our room and listened for your beating heart that had been stilled. She told us that you were gone. Sandy and her staff gingerly walked back into our room. Mommy carried you over to the rocking chair and gently cradled you in my arms. Sandy then resumed taking our photo. Mommy could see Daddy watching our images come up on Sandy’s screen. (Later that evening, Daddy had said to me he had never seen your Mommy more beautiful, or more gentle with you). Again, everyone was crying uncontrollably. I loved being able to sit there and hold you with no wires or tubes connected to your tender, soft body. Mommy stroked your lips, kissed you gently. You just looked like a beautiful baby in a deep sleep. It was so peaceful. I had to beg Daddy to join us for more photos. I told him these were the last photos we were going to have with you. He finally caved, and came over to sit by us. Sandy again, continued taking our photo.

After Sandy had finished with our session, Mommy and Daddy remembered thanking her over and over for being with us, and all she had done. We were so grateful. Then she said something that has never left me. She thanked us! Yes, Thanked Mommy and Daddy for putting our trust in her and letting her be apart of what we were experiencing. Daddy tried to pay her and her staff for being there, but they all adamantly refused. They all said how honored they felt being able to be with us. They didn’t even pack up their equipment. They just carried it into the hall, and started to dissemble it out there. They knew we wanted to be alone with you again.

This time, Daddy laid on the couch, and Mommy brought you over to Daddy, bare chest to bare chest. Again, we both lay there, holding each other, and holding you. I felt some peace knowing that you weren’t suffering anymore, and that you were in Heaven, but at the same time, I felt so empty, and just broken. There are no words to describe the pain and heartache that we were feeling … I don’t know how long Mommy and Daddy lay there with you but finally we both got up. I wrapped you in a soft blue blanket that was to be your ‘blankie’. Your sister Anna had a blankie she was younger, and they were inseparable. This was your inseparable blankie. Mommy carried you back into the tiny room in the NICU. I still couldn’t lay you down. I sat in the rocker again, and just started rocking you, and singing softly to you. You were just sleeping, I thought. Just sleeping. I prayed for the strength to get up. I remember thinking, this isn’t you anymore. Just your humanly body. Your spirit is in heaven. Mommy and Daddy never doubted that for a second. Mommy unwrapped you from your blankie. I then rewrapped you in a hospital blanket. I wrapped you tight, just like your brother and sisters liked it when they were babies. It made them feel secure. Mommy wanted you to feel secure.

One of the hospital workers’ was now in our room. She helped Mommy take molds of your little hands and little feet. Mommy then gently clipped pieces of your hair, and collected it into a little bag. Mommy asked her if they had plastic zip bags for the clothes you had been wearing. I wanted to keep your scent. Mommy gathered the only outfit I had brought from home and folded it. The little hat you had worn, the little booties and your diaper, they all went into that plastic zippered bag. Your soft blue ‘blankie’ was mine. Mommy kissed you all over your soft precious face. I remember just kissing and kissing. Not wanting to leave you alone. Daddy kissed you goodbye, then gathered all of our belongings, and gently led me out of your room. I never in my life thought I would be able to just leave you, lying there alone …

A few weeks later, Daddy and Mommy met with Sandy again. This time at her studio. We had come to view your photos. Sandy told us how much you had affected her and her staff, and that she had to cancel most of her appointments that weekend. She told us that she had sent all of your images to her partner Dave in Wisconsin so that he could create something special for us. She sat us in a darkened room with a huge projection screen. She clicked a button, and then quietly left us alone in the room. All of a sudden, there is your image on this screen. We hear Kenny Loggins ‘Winnie the Pooh’ song, and your photos start to look like a movie. Mommy knew that she wanted to add music, but I only expected to see a slide show of our photographs, so that we could pick out which ones we were going to order. Not this remarkable production!! Daddy and Mommy just sat there and cried. We watched the DVD over and over. You were just beautiful.

Mommy took that DVD home with us that day. I showed it to just about everyone I knew. At first, we were sad watching you. But as time goes by, we now watch your DVD, and we feel so proud to be your Mommy and Daddy. You are such an incredible baby. You have taught Mommy and Daddy so much. Your images bring us so much joy. We could not imagine not having them.

Sandy and Dave and their gift of photography has helped our family heal. We don’t have your photos tucked in a drawer. We are not trying to forget about you. We love showing you off. We love talking about you, just like the proud parents of any newborn baby. We have sent copies to all of our family, and they cherish you as much as we do. Our friends who shared our pregnancy, say seeing your DVD has brought healing to their hearts and family’s. They knew you in my womb and called you by your name. Now they can see your face, and know you….

Reproduced with permission
Now I Lay Me Down To Sleep