Saturday, August 12, 2006

Root family heart story submitted by heart mom Deborah Root.

The story of Harrison Root

My son Harrison Jack Root was a baby conceived of a loving, mature relationship and was a very conscious decision. I tried to do everything right along the way of my pregnancy and had a normal, uneventful 9 months.

I never even approached labor…no contractions, dilations, nothing! Two weeks late, my son was scheduled to be born via induction on December 2, 2004. We had a flood in a newly finished basement living room at our home and barely made it out of the house on time. We had to leave my mother-in-law (with whom we share our home with the concerns of additional flooding and head off to the hospital at 9PM on December 1st.

Once we arrived we had a few minutes and stopped where I had a few sips of soup. After we were checked in and settled, the gave me Cervidil to soften the cervix and begin the induction. Not long afterwards while I was relaxing in bed the nurses came rushing in, shaking my belly and making me turn on my side. It seems that Harrison’s heart rate had dropped with a contract (that I never felt). They removed the Cervidil saying that it sometimes didn’t sit right with the baby and said we would just start with the Pitocin in the morning.

After giving me a sleeping pill I began to slip into a peaceful sleep. Once again, everyone came rushing in and this time it was somewhat more frantic. The managed to raise the babies heart rate again but said this time there was no contraction or Cervidil. My doctor came in a few minutes later and said that since I had those few sips of soup the risk of having the heart rate to drop again and having to do an emergency C-section put me at risk. Since it wasn’t worth the risk, they thought it would be best to do a C-section.

I was so out of it from the sleeping pill that I don’t remember much of what happened next but I was prepped for surgery. My husband watched the whole thing and when Harrison came out, he did cry but looked very blue. Mike asked if that was normal and they said they would like for the baby to pink up so they were smacking his feet. They brought him to me for a kiss and then rushed him to the NICU. They explained to my husband that he may have a lung problem but if it wasn’t that it was most likely a heart defect. Lucky us, it turns out it was both. He had Nemothorax, which was solved with a chest tube.

Harrison was born at 1:01AM and by 8:00 the pediatric cardiologist was in my room with a diagram of Harrison’s condition, Tetralogy of Fallot. From that moment on, everything moved very slowly, one piece of information at a time. At first it was maybe he could still come home, may not need surgery. Then, he would have a less evasive surgery and then come home, needing to return after he was several months old to fix the problem. Then the second day of his life it was decided that he needed to be transferred to the Children’s Hospital of New York to have the surgery preformed sooner, rather than later.

I could not handle seeing my baby in the NICU - so big, and yet so sick. He was easily the biggest baby in there, 9 ½lbs, but he was on a respirator and sedated. They didn’t even want me to touch him, as it would excite him too much. Everyone kept wanting to see him, and they needed a parent to go with them but I just dreaded it. Having a C-Section it was just so painful to cry.

My room was so lonely. Not many people came, and although my mother-in-law was there with me a lot, my husband had to go back to work and no matter who was there, I didn’t have my baby in my arms.

I never anticipated having any problems, never worried about a C-section like I think many moms do. But here I was, struggling with the hard cold facts. A friend researched it for me online, which was a Godsend, and cried with me on the phone after they told me they were transferring him to the other hospital. I just thought it was so sad for my little baby to have to go in an ambulance when he was so new and tiny. He should have been swaddled up nice and warm and in my arms nursing. The NICU nursed brought me a Polaroid picture of him right before he left and the transport team came to my room and reassured me that everything would be okay.

The doctor discharged me a day early so I could go see my son in New York. Let me tell you this, it is not fun to ride any distance in a car after having a C-section.

Harrison struggled with some lung issued so his surgery was postponed for a week. He was scheduled for a full repair on December 13, 2006 at 11 days old. They felt that he was big and strong enough for the full Tetralogy of Fallot repair that often is done in two steps.

He came back from surgery looking so scary; sprawled out with all sorts of things attached, a huge scar on such a tiny body, three drainage tubes…so tough my husband would not hang around for long.

He started to recover really quickly and was impressing everyone. His main struggle was with drinking from a bottle. Within another week, he was sent back to our local hospital for recovering alittle more and mostly to get the hang of drinking from the bottle.

The roller coaster was set in motion again. Everyone at the other hospital wanted to do things there own way. They ignored previous doctors notes, and while feeding him the first time via the NG tube, he spit it all up right away and scared us so much. Turns out he needs to be fed a little slower.

Days went by and we started to think he would make it home by Christmas. One day holding him all of a sudden I saw a hole at the top of his surgery scar. They assured me it didn’t look bad or infected but would call his surgery team at the other hospital. Within a day, the tests came back bad and without even telling us they transferred him back to Colombia. We were devastated…he had a Staph infection. You know, the type you hear people dying from all the time at hospitals.

This recovery was worse than the heart surgery and actually scarier since no one could say for sure what would come of it. They had to open him back up, clean out the wound and stitch him back with not-as -pretty stitches since the skin was no longer healthy.

After struggling with many different nurses, trying to get them to give him a little more time at feedings, he finally came home to us on January 19, 2005. He had what’s called a Broviac, a line surgically stitched into his side to continue to give him antibiotics at home. Not what a new mom and day expect by any means.

This is something no one should have to go through, whether my story is not as bad or worse than others, if we all could be a little more aware and spend time and money researching it maybe we could prevent it.

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