Friday, April 25, 2008

DeLanee's Story (the spiritual side)

There are definitely two sides to this story. The doctor's point of view and then our Heavenly Father's point of view. We had so many spiritual experiences during our time with DeLanee to which our testimonies were strengthened so much. I feel it is important to try to remember them so that they don't get forgotten as the years pass by. I will try my best to remember and write them here.

My first spiritual experience concerning DeLanee happened the day we found out everything that was wrong with her in our level II ultrasound. I came home feeling so terrible that evening. I had just come from a place where I was feeling the highest of highs having been told we were having a healthy little girl. I know that anyone that has been pregnant can relate with the feelings of this. You feel such hope and anticipation with the promise of new life. It is just so wonderful and as if everything is right with the world. And then to have those feelings replaced with feelings of frustration, sorrow, anguish and even anger is overwhelming. I had just learned that the chance of my daughter surviving were next to impossible and because of this I felt like my heart was actually breaking. I had never felt such intense feelings before. I believe this was the darkest moment of my life. I didn't know how I could go on - let alone deal with what was to come. It was then that my phone rang. My Husband brought me the phone and told me it was Sister Wilkins. She was the Compassionate Service Leader in our ward. When I answered she told me that she wasn't sure why she was calling except that the Relief Society President had felt inspired to call her and tell her to call me. She didn't know of our news yet - there was no way for her to know. I told her what we had found out that day and when we hung up I knew my Heavenly Father was aware of me. I felt as though he was speaking to me through her and telling me he would not abandon me during this time in my life. In Isiah 53: 4-5, it reads: “Surely he hath borne our griefs, and carried our sorrows: … And with his stripes we are healed”. That night I felt his arms encircle me with his love.

The next few months I prayed often. I am so thankful for prayer. I know that Heavenly Father hears and answers our prayers. I had heard someone say that if we’re complaining about our trials because the sorrow is too great and more than we can bear, that perhaps we are standing or sitting rather than kneeling and asking God for strength. So this is what I did. I knew I wasn’t strong enough to endure this trial alone and I prayed that he would strengthen me where I lacked, but I also prayed to know his will for my daughter. So, although we were in and out of hospitals and specialists every week wanting to learn as much as we could about the problems that she had, my greatest enlightment came through answers to my prayers from my Heavenly Father. The doctors thought she would pass away in me fairly quickly. Through answers to my prayers, I knew that wouldn't be the case. But I also knew I wasn’t going to get to watch my daughter grow and develop into a young woman either. The next few months I felt as if I was working hand-in-hand with him as we developed her tiny body.

As we got closer to the end, we had a special family fast and prayer. That was on a Sunday. That night, I knew that the time was soon that she would be born and we would have to say goodbye. So the next day, I got everything at my house in order as much as I could and it was the following day she was born. That day we went to the doctors and they could she was dying inside me, so they advised us to deliver her. We had had several months to prepare for this, but when the moment arrived, at first I was so scared and felt overwhelming sadness. My Husband and I said a prayer and asked for strength and comfort. Those feelings continued with me until they laid me down on the operating table. I wish I could explain the feelings of peacefulness that came over me as they began the surgery. The spirit was so strong and I wasn’t afraid at all. I knew my time would be short with her, but Heavenly Father was giving us the gift to hold her while she was alive and feel of her sweet spirit. That evening in the hospital was so incredibly special with her. As soon as she was born my Husband and Father gave her a name and a blessing and then she was placed in our arms where we had the chance to bath her, dress her and hold her until she passed away in our arms 3 ½ hours later. Many people in our family had the chance to hold her and feel of her spirit before she died.

I know that DeLanee's passing was part of a plan. I believe that she and I and Tommy chose this in the preexistence. I don’t know all the reasons why this happened, but I believe if I could remove the veil between mortal life and premortal life, I would see the whole picture. Before we found out everything that was wrong with DeLanee, I was a happy mother anticipating the birth of another baby. Now, I am something more, a different person. I believe I have a deeper faith in and love for my Father in Heaven. I feel that my soul has been tried by the refiner’s fire and emerged more purified. I know that my Faith was built upon a rock and was not whisked away in the strength of the storm. I have watched my Husband, son, parents, siblings, friends all grow from this experience and deepen their conviction in the gospel. I know I will see DeLanee again if I can live faithfully for her to be placed back in my arms on resurrection morning. I am so grateful to a loving Father in Heaven who has created this wonderful plan. I pray that I can live faithfully to receive the blessings he has promised.

Wednesday, April 23, 2008

DeLanee's Story (the medical side)

In August, 2003, we found out we were pregnant. We were so happy to FINALLY be expecting again. We had been trying for 2 years and had previously experienced a miscarriage - so this was exciting. The day before Thanksgiving of that year, at 18 weeks, we went to our first ultrasound. Although we felt like the technician acted a little funny, she told us everything was fine and gave us the wonderful news that we were having a girl! There were no girls yet in our family at that time and we felt so blessed to be having one. That weekend, it took everything I had not to run out and buy every girl item imaginable. I couldn't wait to do the "girl" thing. The Monday following that long holiday weekend, my regular OB called me and asked me if I was alone or if I had family with me. I told him I was at work but on that particular day my Husband was there installing the teledata system for my boss's firm. He then told me that he believed something was wrong with our baby and wanted to refer me to a high risk pregnancy group for a level II ultrasound. He ended with saying it was either something really bad, or, nothing at all. He made arrangements for me to see Phoenix Perinatal Associates ("PPA") the very next day.

When I went to my appointment the next day, they did confirm that our little girl's fate did not look good. She had mutltiple fetal anomalies which included something called "Dandy-Walker". There are a couple of different levels of this. They also told us that most babies who have Dandy-Walker also suffer many other malformations. Which was true in her case. They confirmed that she had a heart defect (double outlet right ventricle), fluid on the brain (cerebellar hperplasia), micrognathia (recessed chin) and the biggest thing being a cyst (cystic hygroma). All of these malformations were related to the Dandy-Walker and they actually ended up calling her case "Dandy-Walker Cyst".

The cyst our daughter had which was caused by Dandy-Walker was on the base of the back of her neck. And because she had developed this cyst so earlier on in the pregnancy it would result in a severe outcome. This cyst ultimately filled her body and vital organs with fluid and she became so edemic that her little body couldn't take it.

For the next 10 weeks, our days were filled with doctor's appointments. There was a specialist assigned to each one of her abnormalities. A cardiologist for her heart defect, a neurologist for the cerebellar hyperplasia, a geneticist to determine the probablity of recurrence in subsequent pregnancies, a pediatrician at Phoenix Children's Hospital, and of course the PPAs who I saw once or twice a week. The doctor's mostly agreed that there would be a spontaneous pregnancy loss - although I continued to carry her for 10 more weeks.

The longer she held on inside of me, the more the doctor's discussed what kind of medical interventions could take place at her birth. Ultimately, they told us that probably no matter what life saving techniques they attempted, she would probably not survive. It was because of this information that we asked them not to attempt to save her life but that they just let us spend what time we would have with her without medical intervention. It was our opinion that we would rather have her die in our arms, feeling our love, then for her to die on a cold surgical table. We did not come to this decision without much prayer, agnozing and uncertainty. Although, when the time arrived for her to be born, Tommy and I both felt very peaceful about our decision.

We felt very blessed to have a live birth with her. The PPAs knew this was very important to us so they monitored me very closely. On January 27, 2008, the PPAs had referred me to Banner Desert Hospital for a series of steroid shots. It was during this time that they hooked me up to the monitor and saw that our little DeLanee was very close to dying and recommended that we do a c-section immediately in order to have a live birth. We asked them if we had time to go home to get our cameras to which they said "Yes - just hurry". We called Tommy's mom in Texas and she hopped on a flight to Arizona. We also called my dad who was on a job in Whiteriver. We were waiting outside the surgery room when they both arrived 3 hours later.

They began the surgery just after midnight and she was born on Wednesday, January 28, 2004 at 12:54 a.m. weighing 4 pounds, 6 ounces and measuring 13 3/4 inches long. Because we had asked them to not intervene, they immediately handed her to Tommy where he and my dad gave her a name and blessing. My dad later said that it was one of the most inspired and beautiful blessings he had ever heard. They then handed her to me to hold as they sewed me back up. After the post-surgery was taken care of they wheeled us back into a delivery room where we spent the remainder of the night with her. Her little heart beat for 3 more hours.