Our CDH story began at a twenty week ultrasound. To our delight we were told we were having a baby boy and then we were asked to wait for the doctor. As the doctor approached me and began to speak about this CDH thing, I felt the joy of life and pregnancy being ripped out of me. It immediately became the worst moment of my life. I remember my initial thought being, “Will the baby live?” and then, “How do I tell our family?”, and then “What if he doesn’t survive?”, and then “What if he has special needs?... I can’t handle that.”, and then the angry, “Why me! Why MY baby!”
We met with the surgeons immediately to discuss what would happen when the baby was born and tried to comprehend what exactly (right-sided) CDH meant but everything was just surreal. It was like being in a nightmare that we could not escape. I remember walking out of the hospital like a zombie staring at all the other pregnant women joyfully leaving with their ultrasound images and calling their family with news of the sex of their new baby. Their happiness made me sick. Everything made me sick.
I cried for weeks. No, months. Wait, what I am talking about, I still cry. But following the CDH diagnosis I cried non-stop for weeks. Then mommy-survival-mode kicked in and I decided that my boy and I were going to fight this CDH to our fullest ability! In the months to follow, leading up to the birth, I did a lot of meditating, researching and doctor visiting. I/baby were monitored twice a week at Johns Hopkins Hospital. I ate apples like crazy for lung strength and berries for his brain (the doctors thought this funny but I was willing to try anything!), in addition to everything else I found yummy and beneficial for baby. The baby had several echo- cardiograms as well as many follow up ultrasounds. Prior to his birth our boy had a many full teams of doctors, including many neonatologists, pulmonologists, cardiologists, many super surgeons, as well l as quite a superb handful of nurses and respiratory therapists just waiting to start their work. We toured the NICU and planned a day to get induced to avoid any possible surprises. We were excited, joyful and terrified!
Demetri Manuel Silva was born on July 19, 2010. He was immediately rushed away to the NICU without a peep as he was intubated just seconds after he was born by the team of respiratory therapists waiting next to my bed. In addition to the RTs, there were many doctors and nurses all in attendance as I pushed Demetri into this world. One of the doctors came to my bedside as Demetri was wheeled away and told me that he was doing as good as expected and that the NICU would call when they were ready for me to visit with him.
Visit Demetri is what my husband and I would have to do for the next six months. Demetri spent the first week of his life on the high-frequency vent and gases and medicines that I could list for days. He was able to be weaned to 100% O2 on a conventional vent for surgery on his 10th day of life. His PPHN or pulmonary hypertension was pretty bad going into surgery which made the doctors, even the most optimistic of them, fearful. Demetri survived his repair surgery without incident but in the days to follow he became very sick and was rushed to the PICU for possible ECMO.
ECMO, we had understood all along, was a possibility. But ECMO wasn’t just ECMO for Demetri. His anatomy turned ECMO into a very dangerous open heart procedure on a VERY sick boy. The doctors suggested that he would not likely survive, with or without ECMO.
He did! Every day after that Demetri improved little by little. And then we came to a standstill. The doctors did a Cardiac Catheter to check Demetri’s heart and decided that a leaky ASD was creating issue enough to require open-heart surgery immediately. Silly me, I was just reaching the point when I thought this CDH thing was coming to a close. Demetri rocked that ASD repair surgery and was extubated again in about a week. Then came time to get off of the massive amount of narcotics and medications!
Demetri was transferred to a smaller, more therapeutic hospital in a last attempt to work on feeding before considering a g-tube and nissen. And after pumping breast milk for months with the dream of breast feeding one day, I caved and decide that the g-tube would be best to get him home as quickly as possible. About a week later, on December 24th, 2010 Demetri came home for the first time! We were back in the hospital on December 26th for some withdrawing symptoms.
Since coming home last December, we have been back to the ER about five times and admitted twice with one scary visit back to the PICU for possible intubation. We are down from ten to about two doctors visits a month since initially coming home. Demetri’s therapists come about four times a month.
I am sure that in this small summary of Demetri’s story, I have missed a lot of what we have been through in the past year. The bottom line is that he is here today with us! We just celebrated Demetri’s first birthday!!! Today our concerns are still that stinking PPHN, coming off this tiny little bit of oxygen, and getting rid of the reflux and retching for good.
This has been the rollercoaster that everyone warned us about but our lives are rollercoaster rides with or without CDH. CDH and Demetri just made us appreciate our rollercoaster ride a LOT more.
~Nicole- Demetri's Mommy
Please visit Demetri’s Blog.
http://www.demetrisilva.blogspot.com/
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