May 10, 2008…that was the day we found out we were having twins.  One would expect the doctor to share the news by using an excited tone “WOW….there are two”.  But instead, the conversation went more like, “oh there are two, don’t go online and look up twin complications”.  We were confused.  The doctor shared she was worried that there was no sac separating the girls.

We were followed by a perinatologist shortly afterwards, Dr. Librizzi.  At week 11, the doctors were relieved.  We were told we had mono-di twins, which meant the girls were separated by a sac.  We overcame the beginning of never ending obstacles.

At week fifteen, our perinatologist, became concerned again. Sophia was not growing as quickly as Kaitlyn and the fluid in her sac was low.  He was concerned that I had Twin to Twin Transfusion Syndrome.   He had talked to us about this specialist in Tampa that performed what he called fetal ablation surgery or laser surgery.  It was such a coincidence that we happened to be leaving for Florida in a few days.  Dr. Librizzi fought to have us seen in Tampa by one of the pioneers in this specific surgery.

We flew into Tampa for the appointment July 1st 2008.   A two hour ultrasound was performed and we waited patiently for the results.   We were told the doctor we would be meeting was a “happy, bubbly guy“. When the doctor walked in, we did not see a smile on his face.  Panic went through our bodies.  We were told we had TTTS stage 2.  There are five stages of TTTS.  The doctor, Rueben Quintero,  was also concerned that Sophia was encountering “IUGR - intrauterine growth restriction.“ The pregnancy was getting progressively worse and we were told we can go on our way and enjoy our vacation, but the girls might not survive a week.  We were a candidate for the fetal ablations surgery and set the appointment up for two days later to have the grandparents come out.

The surgery lasted 45 minutes and the doctor was very pleased.  We were told three major blood vessels were closed by a laser to separate the girls.   The next day, we had to wait anxiously to see if both girls survived the surgery.  We were told, “TWO HEART BEATS.”  We were so happy.  We overcame another major obstacle.

The pregnancy appeared to go well the next two months.  Dr. Librizzi was pleased that Sophia was growing.  At 27 weeks, we were told the girls needed to be delivered due to concerns with my health, preeclampsia and because of Sophia’s health.  Sophia’s Doppler ratings were high.  It was not the news we wanted to hear.

On September 18, 2008, Kaitlyn was the first to come in the world.  She was crying - a wonderful sound to hear.  Then Sophia came.  She was not crying, but breathing.  Her eyes were wide open.  She appeared calm and curious.

Kaitlyn did remarkably well.  She was born weighing two pounds three ounces.  She did not have any setbacks and was out of the hospital in two months one week.  Sophia  had many battles to overcome.

From the beginning, Sophia showed such personality.  She was a feisty little girl.  She did not like the ventilator in her throat and there were times, she pulled it out.  She loved her care and would help out, by sticking her butt in the air to get cleaned.  She also loved her Kangaroo care, in which she would be skin to skin with her parents.

For the first couple months, Sophia had to fight off several infections.  She also had to undergo patent abductus surgery. She was such a fighter and quickly pulled through the surgery.  Monday, November 17, 2008, Sophia became very sick and her belly was very red and enlarged.  We were told she could have something called NEC, necrotizing entercolitis.  We were again in panic mode. NEC…what the heck is NEC?  We spent the night online.  We were so confused, because most of the information we read, babies developed NEC early on…not at two months old. We learned NEC was when the intestines begin to die, due to bacteria.

The next day, the doctors became very, very concerned. A specialist looked at her, but was not available to do surgery, if her intestine was to perforate.    We were given the option to transfer her to CHOP or wait for the surgeon to be available the next day.  Dave made the decision to transfer her to CHOP in spite of the dangers.

That night, when she arrived at CHOP the surgeon agreed she needed surgery. We tried to sleep at the hospital waiting for Sophia to be finished.  At 1 am, we received a knock at the door in our sleep quarters. It was the surgeon. She told us that things looked very promising.  She said that her intestines were in terrible shape, but she believed they would recover.  A sense of relief went through our bodies. Sophia had been so swollen from the NEC, she was not able to be closed up right away and receive surgery a week later to be closed up.  She also received an ostomy bag to give her intestines a break.

It was a rough month, watching her recover.  Sophia had blown up like a balloon and looked to be in such pain. It broke our hears. She also had to have eye surgery during this time due to retinopathy of prematurity.  Week by week, she started to look herself again.

In January 2009, Sophia was finally placed in a crib.  It was such an exciting day for us.  Sophia did amazing the next few months.  These were the most special months for us.  She was doing such amazing things, given what she had been through.

We noticed a resemblance to her identical twin sister, Kaitlyn.  The girls were able to meet face to face and touch each other.  Sophia, ever curious was often fixated on her sister.  Sophia loved to be around others and when given any attention, she was so content.  In her pictures, she was always looking lovingly at the person holding her, not so much at the camera.

Sophia was such a social baby.  The nurses at CHOP learned that  Sophia loved to watch them and they would put her in the middle of the unit so she could watch the nurses work.  During rounds, she was always awake.  The doctors and nurses would tell Dave and me, Sophia has to be listening.  The nurses would prop her up on a boppy so that she could get a better view of everyone talking about her.

When Sophia was left alone at her crib, she learned to get the attention of the nurses by crying.  The minute she had attention, her tears were gone.  She loved to be held and you could see her melt in her families and the nurses’ arms

During the time at the NICU, Sophia also was able to participate in different activities.  One activity she loved was music therapy.  Kaitlyn would also join her. The two girls were so mesmerized by the lady with the guitar and you could see the smiles in both their faces.

The excitement and joy grew in our hearts as we imagined the changes our lives would undergo.  We were told Sophia would be home in March and had Dave and I were required to take classes to prepare for her venture home. But as it happened so many times before, Sophia faced another hurdle.  She could not reach her full feeds and needed surgery to be reattached.   In mid March, she had surgery again to be reattached. During the surgery, the surgeon  noticed the NEC had come back and Sophia faced more complications than expected.  Dr. Collins, the surgeon, had to remove a good deal of Sophia’s intestines to get rid of the infected parts.

After this surgery, the long healing process had to begin again.  Sophia was swollen from the edema and in great pain, but as time went by, she got stronger and looked better.  She got back on her nasal canula and slowly put on some weight, but still had some obstacles.  Sophia began to develop these unexplained Brady spells which caused her heart rate to slow dramatically and her oxygen levels to drop.  The doctors were concerned, but thought it was “reflux“. Sophia was given an ND tube and put back on the ventilator to give her better airflow and to  prevent any significant  brady spells.  Times were starting to get good again.  We could hold our baby and kiss her.  Melissa often sang to her.

On Monday, April 26, Melissa met with the head doctor, who told her Sophia would be home in June.  He talked about the steps needed for Sophia to come home. That night Sophia had a “code blue” - the beginning of many.  The doctor feared she had “pulmonary hypertension“.  This was confirmed the next day.  Sophia started to respond to the typical treatment, but that did not last long.  The doctors thought they had lost her at one point as Dave and I frantically drove to CHOP to get there before she passed.   She pulled through, to spend her last moments with her family.

The doctor realized there was nothing left medically to do for Sophia and wanted us to spend her last moments with her, without the monitors and wires.  We were able to bathe and dress her.  We held her in our arms and kissed her and told her how much we loved her.  We also let her know how blessed we were to have 7 ½ months with her.

What a brave little girl Sophia was….She had been through so much.  She was a fighter…She fought to have time with us.  Dave and I held her in our arms, as Sophia left the earth.

May 10, 2008…that was the day we found out we were having twins.  One would expect the doctor to share the news by using an excited tone “WOW….there are two”.  But instead, the conversation went more like, “oh there are two, don’t go online and look up twin complications”.  We were confused.  The doctor shared she was worried that there was no sac separating the girls.

We were followed by a perinatologist shortly afterwards, Dr. Librizzi.  At week 11, the doctors were relieved.  We were told we had mono-di twins, which meant the girls were separated by a sac.  We overcame the beginning of never ending obstacles.

At week fifteen, our perinatologist, became concerned again. Sophia was not growing as quickly as Kaitlyn and the fluid in her sac was low.  He was concerned that I had Twin to Twin Transfusion Syndrome.   He had talked to us about this specialist in Tampa that performed what he called fetal ablation surgery or laser surgery.  It was such a coincidence that we happened to be leaving for Florida in a few days.  Dr. Librizzi fought to have us seen in Tampa by one of the pioneers in this specific surgery.

We flew into Tampa for the appointment July 1st 2008.   A two hour ultrasound was performed and we waited patiently for the results.   We were told the doctor we would be meeting was a “happy, bubbly guy“. When the doctor walked in, we did not see a smile on his face.  Panic went through our bodies.  We were told we had TTTS stage 2.  There are five stages of TTTS.  The doctor, Rueben Quintero,  was also concerned that Sophia was encountering “IUGR - intrauterine growth restriction.“ The pregnancy was getting progressively worse and we were told we can go on our way and enjoy our vacation, but the girls might not survive a week.  We were a candidate for the fetal ablations surgery and set the appointment up for two days later to have the grandparents come out.

The surgery lasted 45 minutes and the doctor was very pleased.  We were told three major blood vessels were closed by a laser to separate the girls.   The next day, we had to wait anxiously to see if both girls survived the surgery.  We were told, “TWO HEART BEATS.”  We were so happy.  We overcame another major obstacle.

The pregnancy appeared to go well the next two months.  Dr. Librizzi was pleased that Sophia was growing.  At 27 weeks, we were told the girls needed to be delivered due to concerns with my health, preeclampsia and because of Sophia’s health.  Sophia’s Doppler ratings were high.  It was not the news we wanted to hear.

On September 18, 2008, Kaitlyn was the first to come in the world.  She was crying - a wonderful sound to hear.  Then Sophia came.  She was not crying, but breathing.  Her eyes were wide open.  She appeared calm and curious.

Kaitlyn did remarkably well.  She was born weighing two pounds three ounces.  She did not have any setbacks and was out of the hospital in two months one week.  Sophia  had many battles to overcome.

From the beginning, Sophia showed such personality.  She was a feisty little girl.  She did not like the ventilator in her throat and there were times, she pulled it out.  She loved her care and would help out, by sticking her butt in the air to get cleaned.  She also loved her Kangaroo care, in which she would be skin to skin with her parents.

For the first couple months, Sophia had to fight off several infections.  She also had to undergo patent abductus surgery. She was such a fighter and quickly pulled through the surgery.  Monday, November 17, 2008, Sophia became very sick and her belly was very red and enlarged.  We were told she could have something called NEC, necrotizing entercolitis.  We were again in panic mode. NEC…what the heck is NEC?  We spent the night online.  We were so confused, because most of the information we read, babies developed NEC early on…not at two months old. We learned NEC was when the intestines begin to die, due to bacteria.

The next day, the doctors became very, very concerned. A specialist looked at her, but was not available to do surgery, if her intestine was to perforate.    We were given the option to transfer her to CHOP or wait for the surgeon to be available the next day.  Dave made the decision to transfer her to CHOP in spite of the dangers.

That night, when she arrived at CHOP the surgeon agreed she needed surgery. We tried to sleep at the hospital waiting for Sophia to be finished.  At 1 am, we received a knock at the door in our sleep quarters. It was the surgeon. She told us that things looked very promising.  She said that her intestines were in terrible shape, but she believed they would recover.  A sense of relief went through our bodies. Sophia had been so swollen from the NEC, she was not able to be closed up right away and receive surgery a week later to be closed up.  She also received an ostomy bag to give her intestines a break.

It was a rough month, watching her recover.  Sophia had blown up like a balloon and looked to be in such pain. It broke our hears. She also had to have eye surgery during this time due to retinopathy of prematurity.  Week by week, she started to look herself again.

In January 2009, Sophia was finally placed in a crib.  It was such an exciting day for us.  Sophia did amazing the next few months.  These were the most special months for us.  She was doing such amazing things, given what she had been through.

We noticed a resemblance to her identical twin sister, Kaitlyn.  The girls were able to meet face to face and touch each other.  Sophia, ever curious was often fixated on her sister.  Sophia loved to be around others and when given any attention, she was so content.  In her pictures, she was always looking lovingly at the person holding her, not so much at the camera.

Sophia was such a social baby.  The nurses at CHOP learned that  Sophia loved to watch them and they would put her in the middle of the unit so she could watch the nurses work.  During rounds, she was always awake.  The doctors and nurses would tell Dave and me, Sophia has to be listening.  The nurses would prop her up on a boppy so that she could get a better view of everyone talking about her.

When Sophia was left alone at her crib, she learned to get the attention of the nurses by crying.  The minute she had attention, her tears were gone.  She loved to be held and you could see her melt in her families and the nurses’ arms

During the time at the NICU, Sophia also was able to participate in different activities.  One activity she loved was music therapy.  Kaitlyn would also join her. The two girls were so mesmerized by the lady with the guitar and you could see the smiles in both their faces.

The excitement and joy grew in our hearts as we imagined the changes our lives would undergo.  We were told Sophia would be home in March and had Dave and I were required to take classes to prepare for her venture home. But as it happened so many times before, Sophia faced another hurdle.  She could not reach her full feeds and needed surgery to be reattached.   In mid March, she had surgery again to be reattached. During the surgery, the surgeon  noticed the NEC had come back and Sophia faced more complications than expected.  Dr. Collins, the surgeon, had to remove a good deal of Sophia’s intestines to get rid of the infected parts.

After this surgery, the long healing process had to begin again.  Sophia was swollen from the edema and in great pain, but as time went by, she got stronger and looked better.  She got back on her nasal canula and slowly put on some weight, but still had some obstacles.  Sophia began to develop these unexplained Brady spells which caused her heart rate to slow dramatically and her oxygen levels to drop.  The doctors were concerned, but thought it was “reflux“. Sophia was given an ND tube and put back on the ventilator to give her better airflow and to  prevent any significant  brady spells.  Times were starting to get good again.  We could hold our baby and kiss her.  Melissa often sang to her.

On Monday, April 26, Melissa met with the head doctor, who told her Sophia would be home in June.  He talked about the steps needed for Sophia to come home. That night Sophia had a “code blue” - the beginning of many.  The doctor feared she had “pulmonary hypertension“.  This was confirmed the next day.  Sophia started to respond to the typical treatment, but that did not last long.  The doctors thought they had lost her at one point as Dave and I frantically drove to CHOP to get there before she passed.   She pulled through, to spend her last moments with her family.

The doctor realized there was nothing left medically to do for Sophia and wanted us to spend her last moments with her, without the monitors and wires.  We were able to bathe and dress her.  We held her in our arms and kissed her and told her how much we loved her.  We also let her know how blessed we were to have 7 ½ months with her.

What a brave little girl Sophia was….She had been through so much.  She was a fighter…She fought to have time with us.  Dave and I held her in our arms, as Sophia left the earth.