Maddux 2.4.05~2.10.05 PART ONE

[Cheryl Haggard]

PART ONE Of THREE

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 ligation 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 for when they started feeding you. Right now you were being given supplements through a feeding 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 Feb 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.