monicapainter

Sophia's Journey

Rate this Entry

0 Comments

, 02-26-2008 at 03:08 PM (281929 Views)

Eli and Sophia's condition
On September 7, 2006, my husband and I went in for a routine ultrasound in order to determine the sex of our baby. I was 17 weeks and 6 days pregnant. This appointment brought us much more than we bargained for. Shortly after finding out the that Lord had blessed us with a precious baby girl, we learned that she had a life threatening condition called a Congenital Diaphragmatic Hernia (occuring in 1 in 3,000-5,000 births.) The doctors prognosis was very grim and we were left feeling very disillusioned and afraid.
We learned that the circumstances associated with a Congenital Diagphragmatic Hernia (CDH) varied greatly from one child to the next. Doctors informed us that we would not know how Sophia would do until she was born and "declared herself."

For some unknown reason Sophia's diagragm did not completely close between the 8th and 10th week of gestation. Because your diaphragm holds the abdominal organs in place the hole in the left side of her diaphragm had allowed her stomach and intestines to move up into her chest, thus inhibiting the growth of her left lung. We would not know until her birth if she had developed enough lung tissue to survive on her own.

One week after Sophia's diagnosis, I went to see my O.B. (Dr. John Cleary...best doc ever) to discuss when and how delivary would occur. During the appointment, he informed me that another one of his patients had a baby which had also been diagnosed with CDH. He said that he would be happy to put us in contact if we were interested. I told him I would LOVE to speak with her.

A few days later, Christine (who would become a very special friend), called me. We shared our excitment about becoming a mother for the first time as well as our fears for what lie ahead once our angels would come out to face the world. We both felt a very special bond and knew that our little blessings (Sophia and Eli) also had an undeniable and deep connection.

As our pregnancies progressed, our circumstances were very similar. We always spoke after doctors appoinments and the countless ultrasounds. We encouraged one another and prayed hard for each of our families.

Going to the hospital

On December 16, 2006 I was admitted for pre-term labor. The pressure from excess amniotic fluid (caused by the CDH) had caused contractions. I was medicated to stop the contractions; and when this was not enough, two liters of amniotic fluid were drained in order to relieve pressure. This worked, but I was informed that I would be on bed rest at St. Vincents Women's for the duration of my pregnancy.
I called Christine and she came to visit a couple of times. We also learned the dates of our c-sections would be January 10th (Christine) and February 2nd (me). Our pregnancies continued to progress very well and we both looked forward to and feared our delivary dates.

The birth of two angels

On January 10, 2007, Eli Sweigart was born. I prayed so very hard that day. Christine and Lee came to visit while Eli was in the NICU. They were very tired and afraid. All I could offer was my optimism and prayers. At one point I learned that Eli had been taken to St. Vincent Children's hosptial and put on ECHMO (heart lung bypass machine). This is the most extreme measure taken with CDH babies. I cried so hard that day. I just wanted the Lord to let our babies go home and have play dates someday.
I continued to ask about Eli everyday but infomation was given less and less.

Then, on January 24, 2007, Sophia began to experience numerous decelerations in her heart rate. This was the second scare (the first coming a couple of days prior to). Dr. Cleary decided to move forward with my c-section which was cleared with all of the numerous parties (high-risk docs, surgeons, NICU) involved in such a complicated birth. Another determining factor was the availability of ECHMO in case Sophia would need it...I learned that the ECHMO machine was available. I assumed that Eli must have been taking strides in the right direction and was able to be taken off of ECHMO.

On January 25, 2007 I was taken into surgery shortly before 4pm. I did not know at the time, but while that doctor was administering my spinal, my husband overheard something in the other room where he had been taken to wait. Just before witnessing the miracle of his first child's birth, he overheard my doctor tell a surgeon the Eli had passed away the day before.

Sophia was born at 4:05 pm. We did not get to see her or hold her because she was immediately put on a ventilator and stabilized. After my surgery, I was wheeled to the NICU to see my precious daughter for the first time. She was such a little fighter, only 6 lbs. and 3 oz. The days to follow were very uncertain, but we kept our faith in the Lord and prayed so very hard.

I kept asking my husband about Eli and talking about how I wanted to call Christine. He kept making strange excuses so that I would not call her. First he said he left my list of phone numbers at home so I asked for my cell phone. He replied nervously, "I left that at home too." I became agitated and said, "I am calling her!" He took a deep breath and stood up saying very seriously, "Monica, I have to tell you something...I overheard that Eli did not make it." I was shocked and so very sad.
Five minutes later my hospital room phone rang. It was Christine. She was calling, assuming I knew that Eli had passed. If Jim had not told me only five minutes earlier, I would have been totally thrown off guard. Jim had been praying for the Lord to show him the right time to tell me....his prayers were answered. The Lord had reassured him that his timing was perfect.
Christine and I cried together. I felt so helpless. I wanted so badly to take her pain away. She told me that before they let Eli go they asked him to please watch over Sophia. Sophia has an angel watching over her.
Precious Eli just did not have enough lung tissue to survive. He was too good for this world and the Lord needed him in his Kingdom.
Eli's wake would be on January 29th, the day I would be discharged from the hospital. I wanted so badly to go but I did not know if I could handle it. I wanted to comfort Christine and her family so badly. I prayed that God would show me if I could handle it or not. He answered prayers when I was not discharged until 10pm on the 29th. I guess he knew I could not handle it.

Going Home

On January 29, 2007, I was so anxious to go home but so nervous to leave Sophia behind.
I had not left St. Vincents for seven weeks. My father wheeled me down to the lobby and ran to get the car. I sat alone quietly...it was all very surreal. I looked around at the lobby. I didn't even remember what it looked liked...I was too shaken when I enterd the building in December. It was beautiful, adorned with religious statues and even a fireplace.

Gigantic slowflakes fell so very slowly outside. Everything was moving so slowly. I couldn't believe I was going home. I cried because I was overwhelmed, I cried for Christine and her family, I cried for Eli, I cried becuase I couldn't take my baby home, and I cried out to the Lord to please let me keep my little miracle.

I arrived home to many friends and a beautiful gift. My grandfather made all of Sophia's furniture by hand; and my friend, Gillian, had painted a beautiful mural on Sophia's wall. I looked around in awe and then I turned to see that "SOPHIA" was perfectly written on her wall. I broke down and cried so hard. I was so blessed; and at that moment I knew Sophia would be coming home...she had to, her name was written on the wall.
Gillian said she felt a spirit helped her...Thank you Gillian and Thank you Grandpa and Thank you to all my friends and family who helped us through.

Sophia had surgery to repair her diaphragm at four days old. The beginning was very unsure but she kept fighting. She ended up with a whole in her lung and had to be put on level two support (the oscillator) for two weeks. She remained on the ventilator for an additional two weeks. She had a feeding tube until she was two months old.
I'll never forget the day when the doctor finally told me we were out of the woods!!

We brought Sophia home in late March. She is doing great. She is almost one year old and has finally broken the 15 lb mark...15lb 1oz.
I thank God everyday for her. Never take your children for granted...their health is such a blessing.

THANK YOU ELI for watching over my sweet SOPHIA. We felt your strength reaching down from the heavens. You will never be forgotten...your Legacy will live on forever.
Love
Monica and Sophia