Surgery. #6

October 14th - Today was the day. Isaac was 6 days old. For 4 days he has been poked and prodded almost on a continual basis. We've had to weave through leads, IV's, cords of all kinds just to be able to hold him. I wanted so badly to hold him like I did for the first 2 days of his life. With nothing attached, nothing to be careful of, nothing to restrict us to his bedside. I felt this was precious time I was losing. Bonding time with my son. But I also knew that he would remember me being there all the time. The only time I really left was when he was asleep. I asked all his nurses to call me as soon as he had woken up so I could make my way back there.. If I wasn't there already. And they always did. They were all so good to us. One of his nurses even drew him a picture of a ladybug and posted it on the plexi glass next to his head. He loved looking at it. I made sure to pack it in our bag to take home so we could have that for his baby book.

Surgery was scheduled for 9am. They told us that around 7am they would prepare to take him to pre-op. So we made sure to get there extra early to spend some time with him before. He was sleeping when we got there so we let him rest. I did hold him before because they told me once they got him up to pre-op he would remain in his transport incubator type thing until they were ready to take him back to the OR. I don't remember much of this morning. I only remember going up to pre-op. We loaded the elevator. Isaac was wide awake and being a squirmy wormy. He was so precious. We got off the elevator and got to our little room.They told us Dr. Acierno, the anesthesiologist, and the rest of the surgical team would be by to see us. We had requested a nurse, Kristin, from the NICU to go to surgery with him. She was there with us the whole time. She was our favorite. Isaac had so many nurses, at least 4 a day, but we LOVED all of them. But Kristin made me feel confident and comfortable with everything that was going on. I trusted her. She was supposed to be on vacation that Friday but she requested to be on the schedule and to work that day so she could take him to surgery. She did this without even telling us. That's how special and kind this lady was. I had asked someone the day we found out he had Hirschsprung's if it was possible to request a certain nurse to go with him to surgery. When I found out we could, I immediately asked Kristin. I felt better because she was there.

I can't even remember what time the surgical team came by.. Probably around 8:30am. Dr. Acierno gave us a run down of how the surgery would go. She also told us that Kristin would be calling us from the OR and updating us as each step was completed. The plan was to do a small incision under his belly button so she could do a biopsy and have the pathologist review the sample right there to check for ganglion cells. The closer the cells were to the end of his large intestine, the better it was. That meant he could have the pull through procedure because he had what was considered "short segment." If that was the case, she would go ahead and do the pull through. She couldn't give us an exact time frame because she really didn't know. If he had a larger area affected, she may need to do a colostomy. Which would make the surgery more complicated. As she finished the anesthesiologist came in and introduced herself, along with a surgical nurse named Shannon. We were pretty quiet and didn't ask that many questions. We really didn't know what to ask. We just wanted it to be over and done with.

I could barely look at Isaac. I felt so bad. I felt like it was my fault. It was the worst feeling in the world. But I just kept telling myself, this HAS to be done. He NEEDS this surgery. After all, I didn't have a choice. Kristin then told us a few things about what to expect after surgery. She told us he would still be on a ventilator and that he would be very out of it. She said he might be twitching or making odd movements. She said as the day went on it would wear off and he would be back to normal. She basically just gave us a run down of what he would look like and what they would be watching for. She told us that after a surgery she would only have one patient and they monitor them minute by minute. She would only have him for the day. That made me feel better. She would be right by him all day and so would we. I heard people coming down towards our room again and I knew it was time for him to go to the OR.

We kissed him and told him we would see him soon. I promised him that he would get to home in a few days but we just had to do this first. I promised I would be by his bedside when he woke up and I would rock him like I always did. It was the hardest thing I've ever had to do. Fear set in. I began to let my mind run in a million different directions. I burst into tears as I watched them wheel him away. He was happy and wiggling all around. I was like how terrible of a mom am I to send him away like that. He didn't even know what was going to happen. I didn't want him to feel scared. I didn't want him to think we weren't there for him. It was so hard... I reminded him that I loved him and I would be waiting for him.

We went up to the surgical waiting area. At that moment I felt really calm. I felt confident. I knew that this was one step closer to bringing our baby home.  We checked in at the front and gave them our number and name. Each patient is given a number and there is a tv screen that you can watch to see what phase they are in during surgery. Also, we had to give our names and number so that when the OR called to update us they could get us on the phone. Dr. Acierno told us it would take her about 30 minutes to get him set up. And then about 30 minutes to do the biopsy. So we wouldn't hear anything for about an hour. I just kept thinking an hour? An hour? What am I going to do for ONE long HOUR? Ug I hate having a time put on something. That meant clock watching minute by minute for an hour.

Every time the phone rang up at the reception desk, I would jump. My heart would race, my face would feel hot, I felt faint. When the phone rang and it was for us, I jumped up so fast. I didn't know if we would be getting good news or bad news. When I got on the phone Kristin told us that they had done the biopsy and on the first sample there were "lots of ganglion cells." That meant he only had a very small area affected. I was so relieved. She said now they were going to proceed with the pull through. She said he was doing very well. I let out a sigh of relief and hung up. This was the best possible outcome we could have asked for. Now we had to wait for the next call. I figured it would be like at least 2 hours. Blah.. Time.

About 40 minutes later the phone rang for us. Kristin told us that they were done and the surgery went very well. She said Isaac was doing great and that they were taking him back to the NICU to recover and that Dr. Acierno would be up to see us and tell us how everything went. He was in surgery for under 2 hours. I figured it would have taken a lot longer. I was so relieved that it was finally over. I was so eager to hear from the doctor and to get down to see Isaac.

When we met Dr. Acierno in the post op conference room she told us that she had removed about 5cm. She said he had such a minimal area affected that she didn't expect any complications. She said that it was a text book case and ideal surgery. She expected him to do very well. Finally I could breathe again. The worst part of our journey was over.

As we got to Isaac's bedside I felt an instant rush of relief. I was no longer worried or scared. I was so happy, like a huge weight was lifted off my shoulders. When we walked in he was laying on his back.. He was still on a ventilator. And that was hard seeing him like that. But he didn't look bad at all.. I thought he would look horrible. Thankfully, he didn't. I spoke softly to him. We were told to not speak loudly or to talk too much to him because the anesthesia and surgery was overwhelming for him. We actually didn't stay that long because they told us to let him recover and to let him sleep as much as he could. We didn't want anything to hinder his recovery. I asked Kristin how he was doing and if he was stable. She told me he was doing excellent and that they didn't expect any issues.  So we kissed him, told him we loved him, and stayed for about 20 minutes just so he knew we were there for him. I felt so much better now. It was a total turn around. The past 4 days seemed like weeks. All the hours ran together. I was hoping that we would get some normalcy back. This was such a traumatic event that we had not planned for. But who ever does, right? As we walked out of the NICU I imagined what it would be like to walk out of these same doors with Isaac in our arms and for us to head home. That didn't see like a dream anymore.. It was becoming a reality.

Made it to this next crucial step.. #5

Well not much of anything had happened since the biopsy. Wednesday was the 12th of October and basically we just sat by Isaac's bedside all day. We prayed a lot too. We were hoping for the biopsy to come back negative, but deep down inside we knew what was going to happen. I got up really early that Thursday morning the 13th to go over to the NICU. I usually got there around 6 or 7am. And I usually didn't leave until 2am.. I was there all the time. Sometimes I would go back to the Tree House and only be able to sleep one hour so I would sneak out in the middle of the night and go back to Isaac. And as soon as I got by his bedside, I got so tired. Sometimes I would doze off in the rocking chair. I really wished I was able to sleep there.. I would have gotten a lot more sleep that way. Something about being there and being able to watch over him made me feel calm and able to sleep. I just couldn't be away from him.

I think back on these times and thank God that he was too small to remember any of this and not able to be mobile. As I type this, he is almost 5 months old, being a wild man in our bed. He's sleeping next to me. If he were the age he is now or older, there would have been NO way it would have went down as smoothly as it did.

I took a shower, got myself dressed, and then woke up Jose and he got ready. We said one last prayer and headed over to see Isaac. The walk over there was all of 2 blocks but seemed like we couldn't get there fast enough. We  had no idea what time we would see or hear anything. I was prepared to wait all day. But when we got there, within minutes Dr. Golden the neonatologist came over to talk to us. He said that he had looked at the pathologist reports and it was Hirschsprung's Disease. My heart sank. He said Dr. Acierno would be by, I can't even remember what time he said because all I could think about was what he just had told us, to let us know the plan for his care. We both cried. We were devastated. But in a way relieved because from what we had been told and what we had researched, this was a minimally invasive surgery with next to no life time complications. That's IF he had short segment. If he had long segment we knew he worst case scenario he could possibly have a colostomy bag and have numerous surgeries. We didn't want to jump to any conclusions yet, we wanted to see what she said first.

When Dr. Acierno came by she discussed with us the plan for tomorrow, Friday October 14th. She explained to us that she was almost positive he had only a minimal area affected and she was confident she could do the pull through operation. She said she was going to do a small incision below his belly button and do another biopsy in surgery to find the area that had ganglion cells. She wanted to make sure the area she was attaching to had a lot of healthy cells. Then she would perform the surgery to take out the affected area of his intestine and make the healthy connection. She didn't have a time frame for surgery because it all depended on what she saw when she got him in there. Tomorrow would be a really big day because that was the day we got ALL the answers. We asked her a whole host of questions. Mainly we wanted to know when we could bring our sweet baby home. She said anywhere from 5 days at the least to 2 weeks, just depending on what she saw when she got in there, how the surgery goes, and how fast he bounces back. She said typically it's around 5 days. We were ecstatic to hear that. We had a glimmer of hope.. This was the best news we had heard in a long time. Now to mentally prepare ourselves for tomorrow.. Uh if we could ever be prepared for something like this. TOMORROW WAS THE DAY. One step closer to bringing our baby HOME.

Hurry up annnnnd WAIT.. #4

October 11th - We had to pack up our postpartum room this morning. It was really sad because today would have been our first morning home with Isaac. Instead we were rounding our second day in the NICU.. He was 3 days old. They let us have our postpartum room for an extra night which was great of them. I couldn't have imagined leaving the hospital and forced to go home. They were giving us another room tonight that was especially for families like ours. I told Jose that I would sleep on the ground in the hospital before I left Isaac. I was not going home until he came home. Then we learned about the Tree House which was literally in the alley behind the hospital. It was like a house for families dealing with pediatric illnesses. Perfect. This meant we didn't have to go home. So after tonight that's where we would be staying for however long Isaac had to stay here. So we made our way over to the next hospital room they had for us. I thanked all my postpartum nurses. I saw all these happy moms and dads carrying their little newborn babies up and down the hallways. I saw a lot of families packing up and leaving the hospital with their new babies. I was jealous. Did they even know how I felt? I was that mom every one of them would feel sorry for. The one who thought we would be going home one day but now we were going to be here for who knows how long. I just kept asking why me? Why my baby? Why us? What did I do to deserve this? Or even more so, what did my sweet innocent baby do to deserve this? I just cried and cried. I hadn't had a dry eye since he was admitted to the NICU.

I decided to call my OB/GYN and talk to him. Ha. Him and I had a very rocky go out of the gate. At one point I thought about switching but in the end I am so glad I didn't. He is the best in the business. I could not have made it through my delivery if he didn't deliver Isaac. At the very minute I needed support the most and direction, he was there. He is an amazing doctor and human being. I wanted to call him to give him an update on Isaac and to just have him reassure me things would be ok. Before getting off the phone he told me he would come visit us in the next couple days. It also made my heart sink a little bit because he barely had any idea about Hirschsprung's. I had to explain to him what it was. Well geez, does anyone know about this? Besides the staff in the NICU?? I seriously had no one to talk to about this.. No other parents whose baby was in there with the same thing Isaac had. We definitely got the needle in the haystack.

This was Isaac's second day in the NICU. Today I had opened my eyes a little bit more and began to let me eyes dance over all the babies there. Some were in incubators, well most I should say, some were in the same type of bassinet Isaac was in, and "the twins" were in cribs. The twins had been there for 3 months I believe. They were born around 32 or 34 weeks. Can't remember. All the incubator babies always had a blanket over the top of their machine. So you never got to see them. Only when the nurses were performing their rounds. They were so teeny tiny. At that moment I almost felt guilty. Here was Isaac, POST TERM (2 weeks overdue), 8.5 pounds, no major illnesses. Even though I felt like this diagnosis was major. All the nurses and doctors kept telling me to not make a mountain out of a mole hill. I don't know if they are trained to tell you that or they were just trying to keep me from losing it. Either way, I kinda believe them. But I wasn't so sure yet. At the end of our journey I realized how lucky we were. I can say that now but of course at the time I didn't know it. So many of these babies would be here for MONTHS or had been here for months already. I just couldn't imagine. I also noticed that not many parents were around. I spent at least 19 hours a day here, I couldn't even imagine having to leave Isaac. I asked one of the nurses why I didn't see many parents here. She told me that after the moms are discharged they usually only make it occasionally to visit because of other kids, work, living out of town, things like that. How heartbreaking was that. I couldn't even imagine. At that moment I felt lucky. I got to be here every hour of every day with my baby. Holding him, changing his diaper, doing all the things I was allowed to do. The NICU encourages parents to be involved as much as possible, when the babies condition permits it. Thankfully, his did. We were there every shift change, we always wanted to meet the nurse who would be taking care of Isaac. We were there for every 4 hour check where we got to take his temp, watch the nurse give her assessment, change his diaper, and just be able to hold him. I began to see how lucky we were. Dad and I spent a lot of time holding our precious son. We began to formulate a plan where we could be getting sleep but also having someone with Isaac 24 hours a day. So he never felt alone. Between me, Jose, and my mom we made sure someone was always there. Sometimes the nurses had to force me to go back to the Tree House to eat or to get some sleep. I would have slept on the floor or in the rocking chair next to his bed if they would have let me.

It was some time mid morning.. I can't remember the exact time or day for that matter. All my days were running together. Anyone who has experienced something like this will tell you the same thing. I lost all concept of day and night. I thought 10am in the morning was 7pm at night. Dr. Acierno came to his bedside to check him out and prepared for the biopsy.

A rectal suction biopsy allows the doctor to take a small sample of tissue (biopsy) from the rectum (the last part of the large intestine). The pathologist will then check to see if there are nerve (ganglion) cells in the sample. If there are no ganglion cells, that means it is Hirschsprung's. They took 3 different tissue samples from different depths of his intestine. That would give them an idea of how much was affected. It took literally 2 minutes and she was done. Usually the results take a week but since we were on a rush type of basis, sometimes ICU is a good thing, we would know by Thursday. So today which was Tuesday, tomorrow which was Wednesday and then... Thursday. She told us that she had already booked his surgery for Friday morning at 9am. She wanted to book the time so the OR (operating room) was open for her. A wave of sadness came over me. She was the best doctor for this condition, she knew what she was talking about, no matter how good she was, I still wanted her to be wrong about the diagnosis. I was hoping for a small miracle. But in the back of my mind I knew Friday would be the most terrifying day of my life. So instead of asking God for a miracle, I started asking him to protect my son and take care of him. Jose and I spent A LOT of time in the chapel. They had prayer blankets for families in crisis. Some nice older ladies from a church donated their time into making these. We took one, don't worry people they were there to take :), it was really comforting for us. We also took a rosary to put above Isaac's head. Relying on our faith really kept us strong. We knew everyone was praying for Isaac.. It meant so much to us. So for today and tomorrow, it was a waiting game.

Spending so much time in the NICU taught me a lot. A lot more than I think I needed to know.. I knew what all the alarms on the monitors were. What all the numbers on the screen meant. It was like a mini crash course in medical school. That way I didn't have to constantly ask the nurses if he was ok. I could just watch all his numbers and know he was ok. Heart rate good, check, respiratory rate good, check, oxygen level good, check. I was constantly checking the container his suction tube drained into. Sometimes I saw it red tinged with blood. I always got worried about that. But each time they told me it was normal because the suction tube could have gotten caught on the side of this throat, I know sad, or at the bottom of his tummy causing a hickey like thing to occur, which made it irritated and bleed a little. As long as the color of the fluid was not green like bile or have copious amounts of blood in it, we were good. Isaac actually didn't fight it too much.. He was sucking on it a lot.. Silly boy. He was starting to get really hungry. Now that his tummy was feeling better, he was looking for some food. In the end the poor guy didn't even eat for the first 7 days of his life!!!!! Can you imagine how hungry he was when he did get to eat!

At that point there was a little relief that 2 of the 4 big steps were done. Contrast xray and the biopsy. Now we waited for the confirmation and then if need be, surgery. There wasn't much we could do at this point.. We just had to wait. More lessons in patience...

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.