Trying to be more positive

“And we know that to them that love God all things work together for good, even to them that are called according to his purpose.”


(Romans 8: 28)

Not a lot to share this morning. We are waiting on the MRI to take place. Our scheduled time was at 8a.m. We have the same, wonderful nurse again today. We also have a student nurse and her "teacher nurse" with her. Sure we will be getting lots of attention. The pediatrician that came by this morning thinks we will have some answers later this afternoon. He feels like the we will know the MRI report today. He also feels like he will be able to tell us if we will go home soon or have to camp out here for a while.

Yesterday I posted some one line christian funnies. The last one said:
LIFE IS NOT ABOUT WAITING FOR THE STORM TO PASS;
IT IS LEARNING HOW TO DANCE IN THE RAIN.
I have come across this saying many, many times. Some days I feel like that is what I do, but right now, I'm choosing to wait for the storm to pass. Meemaw was enjoying getting to know people yesterday. She was telling me all about the children in the rooms beside us. I choose to keep my door closed. I'm just not wanting to hear others stories right now. I feel bad about this, I'm sure it will pass. I am working on a better attitude. Trying not to be so aggravated about the non communication issues here at UMC. Hoping to get Shelby and Connor here in Jackson tomorrow if we find out today we will be camping out here for a while. That will make things better, too. Shelby is pretty upset about this. That upsets me.


I have been reading a lot this morning. Mackynlee is sleeping. I have been trying to get my mind back focusing on positives. I want to share a true story from one of the blogs I follow. Rereading this story reminds me God is in control and He can perform miracles. HE is the Great Physician!! This is a long story, but it is true and awsome.

A Story of Grace
Sandi

My husband and I found out we were expecting our fifth child in early June 2002. My other children are son (1993), son (1995), and twins - daughter and son (1999). We were very excited about the news and everything seemed “normal” as I began the familiar symptoms of nausea, moodiness and fatigue and I silently prayed for an uneventful nine months.

During my 1st doctor’s visit, the need for prenatal testing (Chronic Villa, Amino, triple screen) was brought up by my doctor. I listened politely, but quickly informed him that I was really not interested and that I would be committed to the pregnancy regardless of any anomalies. He went on to explain to me that I do not know what I would do if I had the information and I should get it anyways. Since I continually declined testing, the doctor wanted to make sure that my ultrasound was done right at 18 weeks.

The ultrasound date came quickly (Monday, September 9, 2002) and my husband and I were excited to see our growing baby. The "routine" ultrasound seemed to be moving along o.k., although it took a very long time and the technician seemed to be taking a lot of pictures of my baby’s bones - arms, legs, feet, hands, etc. We thought this was rather odd and joked between ourselves with eye gestures and smiles. After all of the ultrasound pictures were completed, the technician then left for a long time when she returned, she began taking additional measurements of our baby’s kidneys. I immediately started to worry, but was somewhat relieved that we were not immediately referred to the staff doctor. After that, we were free to go home.

I called my doctor that afternoon, and he later called me back and announced that there were some problems with my baby. Over the phone, he told me that my amniotic fluid was very low; my baby’s bones were small; the femur bones were curved; the head was odd shaped, and the kidneys, stomach and bladder were abnormally sized. In addition, the report said that my baby’s left foot was turned - possibly ‘clubbed’. He referred me to a perinatalogist - and added that the report indicated a pregnancy which in his opinion “smelled liked chromosomal problems” especially in light of my advanced maternal age (37) and that I should keep my options open.

My husband and I quickly reacted. We were lucky enough to get an appointment with the Director of Ultrasound who is a Board Certified Perinatalogist at a well regarded research facility in our major city. The hospital and our doctor both have national reputations in handling high risk pregnancies. We were hopeful that the small local hospital that performed the 1st ultrasound was simply wrong and that the specialists here would set the record straight. My ultrasound was scheduled for Thursday am September 12th.

Our world would never be the same after that day. After an hour long ultrasound performed by a highly skilled technician, the nationally regarded perinatalogist personally came in to perform a second ultrasound (done in uncomfortable silence).

We watched in horror at the whispering between the growing team. Finally, the “curved” femurs were pointed out to my husband and I and we were then asked to wait for the doctor in the office down the hall. The doctor herself arrived about 1/2 hour later. The doctor immediately informed us of the devastating diagnosis--a Lethal type of Skeletal Dysplasia. As a result, there was no reason to mince words—“your baby will die.”

Lethal Skeletal Dysplasia, the doctor explained, is a rare form of dwarfism where not only are the child's arms and legs extremely short /malformed, but the chest cavity is very small. In these circumstances, a baby cannot sustain life for more than a few hours because the narrow chest cavity does not allow the lungs to development properly, allowing them little room to expand and provide the proper amount of oxygen necessary to sustain life. So long as the baby is attached to the mother, she will develop and grow. However, the cutting of the chord is itself the severing of the only lifeline to sustaining the child. As a result, the baby dies of respiratory distress. The options: 1) “Interruption “ of the pregnancy, or 2) continue on, with periodic monitoring of the baby’s condition and prepare for a burial shortly after the birth. We left in a pool of tears and shattered dreams.

Over the course of the next few days, my husband and I discussed our limited “options”. We felt convicted in not terminating, although we did not yet quite understand how long we should carry the baby (i.e. whether or not we should deliver early after seven months?). We counseled with friends, family, and priests. We had such a range of advise, however, one thing really hit home with us. My sister-in-law’s priest explained the confusing situation in such clear and beautiful words - “God does not value a life as a number or years (or even days) we’ve spent alive here on earth, all life is equally valuable to God, no matter how short and we can never fully understand the impact of one life on all of humanity”. It became clear to my husband and I that there really was no decision to make - God was ultimately responsible for the birth (and inevitable death) of my precious child, and to his will we commended her life.

We decided to carry our child to term and to love her for the time that she would spend with us - inside of me. As we made this decision, we embraced her sweets kicks each night; we found out the sex of our baby (something we had never done); and named her the name Grace which means an “undeserved gift” from God.

My original OB, upon receiving the ultrasound report and learning of my desires to carry to term, quickly dropped my case. He did not want to handle my prenatal care and even said that 90% of people with my diagnosis would have “made the appointment” by now. I transferred my care to the perinatal facility, who provided an entire team of specialists that would closely follow our case.

Over the next several months, I entered a fetal assessment program and had ultrasounds performed monthly to monitor my baby’s progress. Our meetings were coordinated by the Director of Genetics , who was not sensitive at all to my decision not to terminate. In fact, until 28 weeks had past (and a termination was no longer possible in our state), this topic was the focus of our monthly meetings. My husband and I stayed the course of our decision and avoided the director's attempts to shed doubt and fear. However, I must admit - It was very difficult not to be bothered by his comments and advice.

The diagnosis of our daughter’s condition was validated at each ultrasound: small femur bones (and other long bones); an easily manipulated bone structure; and a very narrow chest cavity. Her feet were always perplexing to the doctors - no one was ever quite sure what was wrong with them and this apparently was all part of the skeletal dysplasia. During one of the assessment appointments, I had a 3 dimensional ultrasound. A beautiful clear image of daughter’s face was given to my husband and I. We kept this image on the refrigerator door and it carried me through the tough times and me believing in this little life inside of me (although the GE commercials back dropped by the song ‘the first time ever I saw your face’ were simply too hard to handle). I longed for the day to hold her - even if her time alive was very short. I longed for her just the same.

The last of my six separate ultrasounds was performed on December 30, 2002. Grace’s measurements were so poor at this time that they stopped the ultrasound after measuring only one side of her body - in the exam room were the Director of Ultrasound, Director of Genetics, two neonatalogist and a technician. They all agreed that the prognosis of Lethal Skeletal Dysplasia was present and would take Grace’s life upon birth. We provided a birth plan, which stated that there would be no ventilation. Our birth plan stated that the baby was to be wrapped in a blanket and given to my husband and me after birth so that we could spend time with her - her predicted life span “4 to 6 hours”. The hospital agreed to let our 4 other children come to see their sibling on her birth day. We talked to our priest who agreed to come to the hospital to baptize the baby when she was born. The only other arrangements we had made were with the cemetery.

On January 8th, 2003, I started to have some slight cramping and other symptoms indicating that I may be going into early labor. My husband had a short trip to Arizona planned and he was leaving on the early flight the next day. I told him about my symptoms and he insisted that I call my doctor. My doctor said to come to the hospital in the morning and he could check me out. Convinced that I may be going into labor, I packed my bags and loaded them in the car. My husband rescheduled his flight to the afternoon.

On the morning of January 9th, I was hooked up to a fetal monitor and checked for dilation/effacement at the hospital. The doctor calmly stated that I had not dilated at all and my cervix didn’t appear shortened. He said that he was confident that I would not deliver until closer to my due date - February 18th. He told my husband to catch the next plane out. Relieved by the news, I drove my husband to the airport on an unusually warm and sunny January day. Feeling better than I had felt in months, I drove home and felt and unusual peace and happiness. Not that my daughter would live - but just that God would give me strength to endure what lied ahead for us. Despite mental lapses caused by such things as date on the milk that wouldn’t expire until after my baby would be born and die, I arrived home with a renewed energy and focus.

At about 2:00 p.m. that day, I received a phone call from my husband. He had boarded his flight and waited about 1 hour on the runway to take off. The fog was so bad in Phoenix, however, that they had to postpone the flight for several hours. The plane literally deboarded the passengers. My husband travels a lot for business and never in his many years of flying has he ever deboarded a plane - and to deboard for FOG in the desert! Things were really strange today. My husband cancelled his trip that day as he would miss the afternoon meeting he had planned to attend. I was so happy to hear he would be home that evening.

Incredibly, at about 11:30 p.m. that same evening, my water suddenly broke (35 1/2 weeks gestation). We called my parents to come stay with the kids and my husband and I left for the hospital. Our adrenaline was high and are emotions ranged from fear, sadness, longing to finally hold our baby, and confusion. We arrived at the hospital about 12:45 a.m., my doctor examined me in triage, checked position of the baby via ultrasound, ordered an epidural for my comfort, and informed the nurse that there was no need for a FETAL MONITOR. The doctors were sure that Grace would not live—the need for monitoring was deemed unnecessary.

I labored throughout the night. In the morning, we called our priest to let him know that Grace was to be born and asked if he could come baptize her. Unfortunately, the weather had changed and our wonderful 75 year old priest was unable to make it downtown. Instead, he said many tearful prayers with us over the phone that morning. He also set-up the in-house Chaplain to baptize Grace.

With the help of pitocin, Grace Marie was born at 11:19 a.m. All eyes were on my daughter as she emerged screaming from the womb - and my first impression - Wow! She doesn’t look that unusual to me. Weighing in at 4lbs. 2 oz. - Grace was indeed a small baby. Doctors and nurses immediately took and began to access her breathing and vitals. At this time there was no less than 8 to 10 medical doctors/nurses in the room assisting. In addition, several other resident doctors and researchers were in the doorway and hallway, hoping to catch a glimpse of the “dysplasia baby”. Our nurse, who by this time had become completely empathetic to our situation, had literally forced unnecessary observers away from our room.

The doctors and nurses were busy, yet no one was saying very much. They gave Grace a little oxygen to “pink her up” and, given the fact that Grace was 5 1/2 weeks early, her respiratory wellness was no less than unbelievable. Graces’ apgars were 8 and 9. They wrapped her in a blanket and handed her to my husband and I. We joyfully embraced Grace and took lots of pictures of her.

Grace was cleaned up and while she was gone my parents and our children arrived to see Grace and to witness her baptism. Soon after, my two sister in laws arrived. The Chaplain quickly arrived and performed the most beautiful baptism of Grace right in our Labor and Delivery room. As she held Grace Marie , she proclaimed boldly that God would make Grace whole and complete as he was the “greatest Doctor of all”. We were all crying and so happy that Grace was alive long enough to be baptized. After the baptism, we took pictures of everyone holding Grace - despite the fact the we were still not expecting much more time with Grace. Everyone was so happy. We were celebrating.

About an hour later, Grace began a form of respiratory distress - "grunting". The neonatal nurse who stayed with us since her birth needed to take Grace to the NICU for evaluation. We all feared that this was the beginning of the end for our beautiful daughter. The jovial mood in our room immediately changed to sadness. Our family left saying tearful goodbyes to Grace and me and my husband headed out to talk to the neonatalogists.

The neonatalogists wanted to do a variety of tests on Grace right away. They informed us that a team of pediatric doctors were already waiting for Grace at Children's Hospital - connected to the delivering hospital by underground tunnel. We agreed to have Grace tested. My husband went with Grace to Children's Hospital. During the tests, Grace screamed so loud my husband couldn’t believe it was our little 4 lb. baby.

When they returned, the doctors took Grace back to Special care and we waited anxiously for the results of Grace’s tests. About two hours later, the head of neonatology personally called us and asked if she could meet with in our room. At about 6:30 p.m. she arrived. She excitedly told us the unbelieveable news - the X-rays indicated that Grace did not have a skeletal dysplasia (lethal or non lethal) and that her bone structure was very proportionate. They felt she was small (especially her femur bones), however they did not feel she was out of normal ranges (10th percentile for height and weight). The doctor announced also that Grace had oxygen saturation of 100% (apparently the respitory Grunting had resolved itself when Grace screamed the mucus out of her lungs during testing), she was nippling bottles well, and holding her own temperature. They had no reason to even keep her in special care and were bringing her down to our room to “room in”!

Needless to say, we were in a complete state of shock, my husband and I just hugged and cried. Family and friends were called and we cried with each one of them. Everyone was stunned by Grace and the end result of my horrible pregnancy. My husband and I spent the next two days in the hospital with Grace - we took turns just holding her, staring at her. We were so filled with happiness and thankfulness. The nurses had a baby shower to celebrate the life of Grace. On Sunday, we were discharged together -Mom and Grace went home on the same day. The memorial service we had planned for Grace was immediately changed to a celebration - A celebration of LIFE!

Grace is now 15 months and is an exuberant bundle of energy. She is walking, talking and doing all things a normal 15 month old would do. She is still a tiny little thing -16.5 lb. at one year (about 5-10%), but it has not stopped Grace one bit. She is a light to our whole family and a constant reminder that you never can lose faith even when all seems hopeless. I shudder to think of my feelings on this day had we listened to the many specialists who felt “interrupting” this pregnancy would be our best option. Would I have ever known the truth about my lovely daughter? Even if the diagnosis had been correct, the hours or even minutes holding the precious gift that God had planted in me would have been easily worth the few months of pain and suffering. Later, many people told us that seeing me carry this baby had affected their lives in ways I would never know. We are forever grateful that we listened to our hearts. Thank you for allowing me to share my story.

2007 Update

Grace Marie is now four years old and continues to be a symbol of hope and faith in our family. After the first year when Grace continuously stayed just “off the chart”, her growth has been normal in the 5-10th percentile. Her enthusiastic pediatritions predict that she will be 5’2” at adult height! Grace is extremely bright performing beyond her age, and plans to one day be a princess ballerina. She takes ballet lessons, goes to preschool, art class and enjoys her brothers/sister immensely. Her imagination keeps us all on our toes! Her story is always on my mind – A day does not go by when I ponder on her horrible diagnosis. My heart aches for the “Grace’s’ that were never brought to their natural term. As we found very little support and hope during my pregnancy, I have made it my personal mission to widely share my story. It has already been included in 2 publications including Defiant Birth that was published and released in 2006. If we can help one other with our story, we feel our goal has been fulfilled. Thank you again for allowing me to share.