How am I supposed to remember what this is when I can't even spell it? #2

After what seemed like an eternity and absolutely getting no answers yet, the doctor came back to Isaac's bedside and told us that after reviewing the films he had called in pediatric surgery so they could evaluate him. I asked why SURGERY would need to review the xrays and evaluate him and he said they saw "abnormal gas patterns", "loops in the bowel", and a "narrow transition zone." Well what the heck did that mean? I asked him if he knew what the diagnosis would be or if he had any idea of what it could be. He said it could be a mucous plug that was blocking his intestines or some type of rare congenital disorder. He said but that's why he wanted a pediatric surgeon to take over his care. So now we waited for another doctor to come and talk to us. Meanwhile, all we did was sit by his bedside and watch him. He had a suction tube down his throat to keep his stomach clear of any fluids. He had a catheter in his rear end to drain all the gas and stool out since basically he had an obstruction and nothing could get out. He was hooked up to the standard ICU machines, pulse ox which monitored his oxygen levels, heart monitor, and a respiratory monitor. Along with all those things, he now had 2 IV's in. He had wires, leads, lines coming from every where. And all I kept thinking was how did this happen? And why? 

When the pediatric surgeon arrived, which was VERY quickly, I was so nervous but so eager to hear what, if any, news. She introduced herself, Dr. Stephanie Acierno. She explained to us that she wanted to do a barium enema which was a contrast dye xray of his abdomen because of what she saw on the regular xrays. Ok, but what did that mean?? She said that from looking at the films she suspected Hirschsprung's Disease. HUH? What IS THAT? Our question exactly. I had NEVER heard of that. We looked at each other and basically asked at once, "Is this something he can live with?" 

So what is Hirschsprung's Disease? 

The following information is from the Cincinnati Colorectal Center - Cincinnati Children's Hospital. 

Hirschsprung’s disease is a type of colorectal condition that occurs when nerve cells that are normally present in the wall of the intestine do not form properly during fetal development. During digestion, intestinal muscles move food forward in a movement called peristalsis, requiring special nerve cells called ganglion cells. Because these nerve cells are missing in children with Hirschsprung’s disease, normal peristaltic (bowel movements) movement cannot occur. Consequently, stool backs up, causing either partial or complete bowel obstruction. All children with Hirschsprung’s disease require surgical treatment.

So after hearing a brief description of what Hirschsprung's (HD for short) was, we wanted to know what we were dealing with. Dr. Acierno told us that she was almost certain that's what we were dealing with because of the amount of distention that was showing on the xray and because the transition zone was narrow. WHAT DOES THAT MEAN? Basically it was like trying to poop through a straw. Because he did not have the proper nerves that the muscles needed to function to push the poop out, it caused a narrowing and obstruction, and that caused him to get all backed up. She told us that she was hoping there would be only a small portion affected so they could do a procedure called a pull through. However, some children suffer from total colonic Hirschprung's Disease which meant their whole large intestine is affected.. NOT GOOD. But she told us that 80% of infants with this problem are lacking the cells in the sigmoid colon or rectum. GOOD. The less amount affected, the better the outcome. This is where we learned about SHORT SEGMENT HIRSCHSPRUNG'S DISEASE (or SSHD) and LONG SEGMENT HIRSCHSPRUNG'S DISEASE (or LSHD). Determining if he had short segment or long segment would determine what type of surgery he could have. A pull through or end up with a colostomy bag.

So now we needed to know if he had short segment or long segment. I asked if there was other conditions that looked similar to Hirschsprung's on film but unfortunately there wasn't. The only way to get a positive diagnosis was to do this contrast xray and then if they still suspected Hirschsprung's they needed to do a suction biopsy. The biopsy was the only way to give us a for sure confirmation. It was an easy procedure done at his bedside and did not hurt him. First we needed to get this xray done to see what we were really dealing with. So we started to prepare ourselves for this journey.

We can still go home right? #1

October 10th - Isaac is 2 days old. For the most part he seemed like a normal baby.. But hey, what do I know? I'm a first time mom. Other than the fact he has not been interested in eating much of anything, he seemed just perfect. I couldn't believe in a few short hours we would be taking our long awaited baby home. I hadn't gotten much rest because I was just too overjoyed about him finally being here. I just wanted to cuddle him and stare at him. 

Throughout the 2 days after his delivery he had been spitting up a lot. Of course, being me, I asked the nurses if that was normal for a new baby. They told me during delivery babies swallow amniotic fluid and that was the reason he was spitting up and also not very hungry. Seemed odd to me but what did I know, right? Well at about 5am, when Isaac was 2 days old, the day we were supposed to go home with our new baby, he spit up yet again. This time it was green and looked seedy. I was going to just blow it off because they kept telling me his spitting up was because of the delivery. They never mentioned that green was NOT ok. Thankfully I did call the nurses in and showed them the cloth where he had spit up at. The next series of events happened so fast I can't even remember much of anything.. 

They had me walk him down to the nursery on the postpartum floor so they could check his tummy out. Luckily, our pediatrician was on the floor doing her rounds early that morning since it was a Monday, she was checking out all her new babies from the weekend. She was told what had just happened and she said they needed to call for a NICU nurse to come up and bring him down for assessment. Was she serious? MY healthy baby needed to be assessed by the NICU? I was not prepared for what I was about to see and be put through in the NICU.

The NICU is a very scary place but also a very good place for babies that need the intensive care. As we walked into the unit I was in total shock. There were monitors going everywhere, screens everywhere, nurses and doctors everywhere, beeps and noises everywhere, the lights were dim and it was almost like organized chaos. This was nothing like I had ever seen. It was not like a typical hospital unit. There were no individual rooms, all the babies were grouped in 4 areas. I assumed by what condition they were in. Isaac was brought to a corner unit and put in a little bassinet. My heart was pounding, my head was aching, my body was terribly sore from just giving birth, I was exhausted, but I had to know what was wrong with my baby. No one was saying anything.. 

I remember when we first met Dr. Golden. He came over to Isaac's bassinet and told us he was the neonatologist in the NICU and he would be taking care of Isaac. He said they were going to do an abdominal xray immediately to see what was going on. I asked why they needed to do this xray and what they were thinking it was. He told me that because of the green bile spit up, and his distended (which is now a very familiar phrase for us) abdomen that they were thinking he could have some type of intestinal blockage. Before he could even finish the xray machine was at Isaac's bedside. I had never seen a mobile xray machine and I had no idea they could do this at his bedside. Technology. This was the beginning of our journey with Hirschsprung's Disease...