Sunday, September 25, 2011

Featured Child~ Allison

Allison was diagnosed with CDH at our standard 20 week ultrasound. We had the ultrasound done on December 20th, 2010. The follow up appointment was the following day, our 2 year wedding anniversary. I went in and it seemed like any other appointment. They checked my weight, took my blood pressure, and the doctor came in to chat. She asked how I have been feeling just as she always had. She then pulled out the ultrasound information for us to go over. "We found an anomaly on your ultrasound” the doctor told us. “Your little girl has a hole in her diaphragm that has allowed her stomach to move up and prevent her from having normal lung development. I can no longer be your doctor. We are referring you to a specialist for a closer look."

We starting learning lots of things that we wished we never had to know about. We had never heard of CDH before, but now we knew everything there was to know about it. We found out what a perinatalogist does, what LHR determines, where the best NICU was, what ECMO is, what NST stands for, what FISH results show, etc., etc. It was a very long and stressful pregnancy. Starting at 28 weeks, we went in twice a week for an ultrasound and non-stress test. Also, at about 28 weeks I was diagnosed with polyhydramnios. They told us that they expected that with Alli’s condition, and they had been watching for it. Unfortunately even with all the examining we were under, they had no idea how severe Allison’s condition was, or that she would show up six weeks early.

Allison was born April 7th, 2011 – almost two months too early. My water broke right as I was arriving home from work. My mom rushed over to take me to the hospital. My husband was at work and would be right behind us. The hospital Allison needed to be at was an hour’s drive. We got there and there was no stopping her arrival. We were so frightened because of how many times we had heard that Allison needed to be born full term to survive her condition and the surgery required to fix her. It was an easy labor and birth aside from all the stress. As Allison arrived, the room filled with eight or more doctors and nurses. The moment she came they whisked her off to be intubated and set up in the NICU on all sorts of tubes, wires, and machines. I had just had a baby girl, 5lbs 2oz. 18 inches long, but it would be several hours before I was allowed to see her and much longer before I could hold her.

The first five days were the longest going back and forth from “She might not make it through the night,” to “We will schedule surgery soon.” Finally on that fifth day she was stable enough for surgery. During surgery they discovered that Allison was actually missing all but a sliver of diaphragm. All of her stomach contents were in her chest and she only had a nub of lung tissue on the left side and only ½ a lung on the right. They did a Gortex patch repair, and we all crossed our fingers. It was another week before she was breathing on her own and we were able to hold her for the first time. We were so proud to have such a fighter. The machines and wires slowly started dwindling away. After six long weeks she was breathing room air and getting enough to eat on her own, so they decided that she could come home. We finally left that NICU room with a baby in arms on the day she was due to be born.

After arriving home, it was only one day before we found Allison having bloody stools. We immediately took her into her new pediatrician’s office and they diagnosed her with milk protein allergies. It is unfortunate that she has these allergies, but we were so glad to hear that it was not anything a simple diet change couldn’t fix. After trying several different diets for my breast milk and even more types of formula, we are finally starting to get Allison figured out. She now gets a medical grade hypoallergenic formula delivered in crates monthly and is on Prevacid for acid reflux. We have had our number of appointments discussing that as well. We have been told that because Allison has a different make up inside, reflux is just something that we are going to have to get through. The hope is that she can grow out of it by the time she is a year old. Until then, we will just have lots of laundry and carpet cleaning to do.

The first three months at home were filled with appointment after appointment. Her surgeon wanted to see her monthly for an x-ray, the pediatrician wanted to see her weekly for weight checks, the cardiologist needed to check up on the small holes they had found in her heart during her NICU stay, and we started seeing a GI specialist about Allison’s allergies and reflux. Now into the 4th month, we are finally down too only being scheduled for the standard well baby exam every two months. The surgeon decided at our last appointment that her repair looks perfect and that he no longer needed to see her unless we had concerns. The heart doctor told us that her heart seems to be unaffected by the holes and that she would not need to see him again until she was a year old. The GI specialist got her on the special formula and we only call him for advice about her reflux once in a while. And Allison is finally on track with her weight gain, so the Pediatrician. said we no longer had to come in for weight checks.

It has been a long journey, but we are so proud to say that Allison is doing amazing. We did have one little scare with some aspiration pneumonia a couple of weeks back, but we caught it early and it was nothing a little antibiotic didn’t clear up quickly. She is a beautiful, happy, and healthy - almost six month old baby girl, and she is meeting all of her social and physical milestones right on time and some a little early. Of course her charting goes by her adjusted age of four months, but none-the-less she has impressed everyone – all of her doctors, all of her therapists, and of course us! We will be starting her on some solid foods for her upcoming half birthday and we are so excited to start living with her the way that most parents get to with their little ones – without all the extra worry and appointments. We will be following quarantine protocols for her first winter with lots of hand washing and flu shots, but other than that she is no different from any other baby. All that’s left of her tragic start is a thin scare along her left rib cage, and bit of adorable petiteness.

~Alexis, Allison's Mommy

Wednesday, September 7, 2011

Featured Child~ Demetri Manuel

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.