On March 18th, 2005, 6:31 am, Joseph's fight for life begun. An hour after birth he was rushed off to Columbus Children's Hospital where he stayed for the next 5 months. He was admitted in to the NICU where he was cared for by excellent nurses and doctors. I was still in the hospital for recovery of surgery and would be released in the next 72 hours.
On March 20th, My husband and I received a phone call from Children's in regards to Joseph, while sitting in my hospital room. Joseph's heart rhythms were dropping into the 50's when normal for a newborn is 120-160. The cardiologists wanted to implant a pace maker to help keep Joseph's heart beating right. Joseph was placed back on a ventilator to help him with his breathing and also to prepare him for surgery. The surgery would take place the next day at 7 am.
I was able to get a day pass from my doctor to leave the hospital and be with my son while he had his surgery. I got to hold that precious little angel for the first time before they took him away to pre-op. He was so small and frail, but slept so peacefully in my arms.
That was a stressful day. I was on pins and needles while Joseph was in surgery, and in such great pain. I could not walk and needed to be pushed around in a wheelchair. Needless to say, the surgery was a success. After the 2-3 hour long wait, Joseph was recovering in the CICU. When the doctors let us back to see him, I started to cry. My mother in law and husband were a great support for me and Joseph that day. But nothing could stop the feelings and thoughts that ran through my head. I felt like a horrible person. I brought this innocent soul into the world who has been subjected to a painful procedure. Not even big enough to understand, not able to be aware of what was going on. I felt selfish. I brought Joseph into this world and was making him suffer so he could live for me. Because I wanted him so bad. Those feeling would soon perish once I realized why he was sent to me.
I returned to OSU that night with my husband and let Joseph recuperate from his surgery. I would be released from the hospital myself in a day or 2. The next morning the doctor came in and examined my incision site and said I was healing nicely. They removed the stitches and told me I could go home that day. I was out of there by noon and headed straight o Children's to see Joseph.
My husband and I didn't stay long that afternoon. We checked in at the Ronald MacDonald House across the street from the hospital and then left to go home for the evening to pack up some personals and get some rest. The next day, we headed back up to Columbus. Put our stuff away in our room and headed over to see Joseph. I could not walk very well yet and had to be pushed around in a wheelchair. Joseph was weaned off the ventilator and placed on C-pap to help keep the airways in his lungs open. This was a step in the right direction, a step on a very long road to be traveled. Joseph was very irritated too. He hated that thing on his head and nothing would console him. I was worried cause not even my voice worked. I tried to massage his feet and it made things worse. I could not hold him yet cause he was still too fragile from surgery. So I just stood next to his bed and held his finger.
As the weeks went by, so did Joseph's progress. He was moved back to the NICU from the CICU and there he was taken well care of. He stayed on the c-pap for a few weeks. The nurses tried to move him to nasal canula (oxygen) once a week. they did not want to push him too hard cause that would cause fall backs.
A couple weeks after he was moved back to the NICU, the doctors discovered Joseph was having some trouble with Jaundice. he had jaundice shortly after birth and they got rid of it. But then it came back. It was not the same Jaundice that newborns have this time. This was being caused by the liver not working right. Further research showed Gal Bladder sludge. This caused major concern. Tests were done and more discoveries made. The doctors found that Joseph's spinal cord had a couple hemi-vertebrae or Butterfly vertebrae. Further findings included special fibers in the eyes. The doctors put all the symptoms together and discovered that Joseph had a rare genetic syndrome called Alagille's Syndrome. Alagille's syndrome (AS) is an autosomal dominant disorder associated with abnormalities of the liver, heart, skeleton, eye, kidneys, and characteristic facial appearance.
We were devastated again by the news. Worried about our little boys liver and worried that he would need a transplant. Joseph was started on Vitamin K and Actigall therapy to help him break down Bile from the liver. We started meeting with a genetist who would follow Joseph. DNA tests were performed on Joseph. But they could not find the Jagged1 gene that caused AGS.
A couple weeks later, Joseph ran into some more trouble. It appeared that the incision from his Pace Maker surgery was not healing as hoped. The pace maker started to erode back out of the incision. The doctor needed to perform surgery to make a bigger pacer pocket and push the pace maker deeper inside. This was a high risk surgery for infections, but one that was needed.
On April 20th, 2005, Joseph went back under the knife. This day was so hard for my husband and myself. Joseph had been alive long enough now to know when he was hungry. He was being fed by a nasal feeding tube every 3 hours. And when he was being prepared for surgery, he was not allowed to eat for 12 hours before surgery. (NPO) Joseph was very upset at this, and in the pro-op room he was so hungry that he sucked on his binki like there was no tomorrow, especially when it was wetted down by water. When they came to take Joseph away, I had to put him back down in the bed, and he cried so loud I stopped dead in my tracks and had to gather all my strength not to cry with him.
Joseph pulled through this surgery with flying colors. He was placed on a wound-vac to help him heal faster and prevent infections. The doctor decided to leave Joseph on the ventilator for a week this time cause he felt that the reason the pace maker came back out of his wound was because Joseph worked too hard to breath when he first came off the vent and he came off too soon, so they kept him on it and sedated him all week long. It was a very hard for him and myself. I hated watching the nurses suction his tubing. He would gag so hard and it hurt me so much. At one point, Joseph stopped breathing when the nurse tried to suction his tubing and the phlegm got stuck. She did not realize at the time that is what had happened until he started to de-sat and stopped moving. Luckily, She handled the situation professionally and calmly and was able to get the tubing clear of gunk and got Joseph breathing again.
Over the next couple of months, Joseph continued his fight to get bigger and stronger. The nurses eventually got him feeding on a bottle 3 times a day. I learned how to bathe Joseph, as well as change the diaper, feed him, take his blood pressure, measure his girth, and eventually I was allowed to breastfeed. That was an adventure on its own. I was allowed to bond with Joseph and got to know this very special little boy. It was quite amazing to watch him get comfortable in my arms while he ate. He hated it when the nurses took him away and placed him back in the crib. He would try to re-latch himself on me when I tried to burp him. At one point, our relationship blossomed so well that he crossed his eyes at me and made me laugh so hard that he had to laugh with me.
Within a couple of months, Joseph was moved from the NICU to the step down unit T2 (NICU2). We were closer to going home. While on T2, Joseph continued to work on his feeding 3 times a day and the nurses continued to wean Joseph's need for oxygen. Our medical home equipment was delivered to us and we were trained on how to use and care for them. Also during this time, Joseph had to undergo more surgery for a long term feeding tube in his abdomen. This was a scary procedure because he had his pace maker sitting on his stomach. Luckily the surgery went smoothly, which put us even closer to coming home. Joseph had a new shiny G-tube!
Down to the last 2 weeks of Joseph's hospital stay, the nurses had my husband and myself even busier. We had to learn how to hook up Joseph to his feeding pump, learn how to mix up his formula for calorie boost, give him his medications, and learn CPR. On top of that, we had to go home and make sure everything was set up just perfect for Joseph's homecoming.
August 9th came fast and Joseph was released. For 5 months we stayed with our baby at Children's Hospital and fought with him the whole way through. All for the wonderful day we could bring him home. There he would be able to enjoy being a baby, and would continue to develop and grow. Joseph would teach his family great strengths they never knew they had.
