Saturday, January 7, 2012

Featured Child~ Sydney


Sydney’s Story

I was 34 when my husband and I decided to have another child. We already had a 12 year old son, a 9 year old son and a 9 year old daughter. After about 2 months of trying I found out I was pregnant. We were so excited and the pregnancy was just so perfect. At 19 weeks pregnant my OB sent me to another hospital that had a level 2 ultrasound because of my age. We found out that we were having a baby girl, which would round out our family very nicely. After several minutes the ultrasound tech went to get the doctor. After several minutes the doctor told us that our daughter had Congenital Diaphragmatic Hernia. He quickly explained what it was and in the same breath told us that it was going to be a very long road and since we had three healthy children we should “bail out”. We decided to have an amino then and there. As we were leaving the doctor told us that Children’s Hospital of Philadelphia (CHOP) would be the only hospital in the area that could help her.

I called CHOP as soon as I got home and made an appointment for the following week. During that week I did nothing but surf the internet for anything on CDH. I read many blogs and medical journals. Most of the information that I read was horrifying! After spending six hours at CHOP having a fetal MRI, Echo, and extensive ultrasound we met with an OB and a general Surgeon, DR. Flake. We were told that our baby had a RCDH and it looked as if most of her organs were in the chest. The said that her HLR was .62. I knew from all of my research that anything under 1.0 was not good at all. Dr. Flake told us that she had at best a 10% chance of survival. We asked what her quality of life would be if she survived and what they would do if this was their child. Of course they could not answer, but they did say that we still had a small window of time if we decided to terminate. On the way home, my husband asked what I wanted to do. I just could not make that decision. Gary said “If God wants her, then let him take her”. This was the start of our incredible journey.

Sydney was born on Nov 5, 2008 at 36 weeks via C-section due to my high blood pressure. Six hours after birth she was placed on ECMO.  We were told on a daily basis that they did not know if she was going to make it. At 9 days old they decided that it was time to do the repair.

syd after repair (2)

Sydney was missing the right side of her diaphragm. Her liver, stomach, intestines and gallbladder were in the right chest. Her heart was pushed to the far left wall of her chest. The right lung was about 20% the size and the left was about 75%. Because of the way the liver developed, it would not fit in its proper place and needed to be manipulated and turned to fit on the left side. Her intestines were not able to fit so she had a silo for 12 days. We were told after surgery that they did not know if the bleeding would stop due to all of the manipulation that the liver had endured. We held our breath as they placed the drains in to see if it was clear or blood. Thankfully it was clear.

At 19 days old Sydney had to come off of ECMO due to a grade 2 brain bleed. When they trailed off the day before she did not do well at all. When we walked into her pod, they had placed the homemade keepsake blanket on her warmer and asked if we would like to “hold” her since we were not able to before. Everyone was convinced that she was going to pass away that day. They Dec annulated and she did amazing. At six weeks we were first able to hold her and at 7 weeks (Christmas Eve) they extubated her and put her on 4 liters high flow nasal cannulas. That was such a wonderful day, our three oldest were able to hold her for the first time. Two weeks later she had to be vented again. She was not able to get rid of the carbon dioxide. Again two weeks later she was put back on high flow nasal cannulas with 5 liters oxygen. She had a very hard time with weaning of the meds while on the oxygen. She was miserable; no one wanted to care for her. All she wanted was for her mommy to hold her.

Sydney 2

In March, at four months they decided to do a Nissan because they felt that she was micro aspirating. A month later they decided that the only way that Sydney would be able to do anything besides breath, she would need a trach and vented. When they told me this, I thought it was the end. After two weeks of recovery, Sydney was a different child. We never realized how difficult it was for her to breathe until she was vented.

syd after track (2)

She soon began sitting up, playing, smiling. She was the baby that god intended her to be. Before we could leave CHOP Gary and I had extensive training in changing trachs, troubleshooting the vent, and suctioning.

We left CHOP NICU after 224 days. She had a trach, was vented for 24 hours a day. She had a G-Tube and received all feeds through it. She was on Viagra for pulmonary Hypertension, Diuril, Potassium, and Bethanical (for reflux), and dual hearing aids.  When we came home she had 16 hours of nursing a day, was receiving PT, Speech, and seeing a teacher of the deaf. Three months after coming home (Syd was 9 months) the docs started to sprint her off the vent. In October of 2010 she came off the vent completely. They took out the track in April of 2011; two years from the time they put it in. We were told that she would probably have the trach for at least 3 years.

Sydney is doing amazing. Her lungs are both growing and functioning well. The right lung will most likely never be full size but she is doing very well with the one lung. She is off all meds except for Xopenex when she has a cold. We still have the G-tube, but she eats!! We still get feeds overnight due to her being only 6% on the growth chart. We are considering weaning off the night feeds this month.

We were told that Sydney would have many delays due to the severity of the brain bleed. When she turned 3 she was tested by the early intervention. She scored right on target for her cognitive, above age level for speech (were told she would not talk) on target for fine motor. Sydney has a slight delay in her gross motor. They feel most of it is caused by fear. Oh and her hearing loss is so mild now that she does not need the aids. She started pre-k this November and loves it. Sydney is truly an amazing little girl that has an amazing will. She knows what she wants and will not stop until she gets it. I am eternally grateful for the nurses, doctors and staff at CHOP and for the entire answered prayers and miracles god has given us.

~Kathy Taborelli- Sydney’s Mommy