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.

More photos from the NICU

Suction tube :(

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...

Photos from the NICU

It has only been a few hours? It feels like 8 days already.. #3

We finally had a time for the contrast xray.. Early afternoon. Isaac was sleeping comfortably. He was sucking on a pacifier like a mad man. That was the most action I had seen in his little mouth. As you could imagine him being all backed up made him not hungry. I mean come on guys if you couldn't poop would you want to eat anything? (Trying to have some humor here :) ) The catheter was basically allowing him to poop. It looked so uncomfortable but I knew his little tummy felt so much better. As for the suction tube down his throat, well that was for the birds. He didn't seem to mind it though.. At least not for now. 

We decided to leave the NICU for the first time since he had been admitted. Thought eating was a good idea. I felt guilty eating because my son couldn't eat. So why should I? I mean now that his stomach felt better I'm sure he wanted to eat. But because they didn't know what was going with him, he couldn't eat at all. But we decided to walk back to our room and then go to the cafeteria.  We didn't even make it half way and the NICU was calling my cell phone. I totally freaked out. To this day I still have NICU programed in my phone. They told us there was an open spot for his xray immediately and we needed to get back there. I was so happy because that meant answers sooner, but then I got scared. Um is his condition getting worse, is this an urgent matter now? I don't think I could have walked any faster with out breaking out in a full speed run.

When we got back there they told us they were waiting for his transport. What? Transport? Where is he going exactly. They told us the transport babies in an enclosed little bassinett.. Kinda looked like a mini incubator. It allowed them to keep all his machines going.. Ah makes sense. I mean did I really think they were going to unhook the 5 machines he was hooked up to? Just as that thought left my mind, transport arrived.

He had 2 NICU nurses escort him to xray. And then there was the radiologist and his 2 assistants in there. The room was packed. We had a little celebrity there. I could barely keep it together. I was such a mess. Crying hysterically, could barely even stammer any words out. Luckily my boyfriend Jose is more level headed than I am, so he kind of kept me focused. I really thought this xray would be fast and easy. I was so wrong. They had to strap my little baby down with his arms above his head so he wouldn't move. If he moved they wouldn't be able to get all the films they needed. I felt like a terrible mother. A failure. My baby was screaming his head off and I could do nothing for him. This whole process seemed like it took forever. I don't know how I survived that but I did. It broke my heart into so many pieces. I just wanted to pick him up and take him home. I had never "planned" for this to happen. This is where I stopped planning things in my life because when you plan things they always seem to never pan out that way.  That was definitely the worst moment of my life.. I had to step out because I just couldn't take it. He was crying for me. For me to stop them from doing this to him. What a rude awakening to the world. This wouldn't be the first time he would be hurt and be in pain. I wanted to take his place so desperately. I kept asking God to comfort him and to protect him. And also for him to forgive me for putting him through this. But I knew that this was to make him better.. I had to keep that at the forefront.

I was hoping to get answers immediately. I was trying to read all the medical staffs faces in there but I really couldn't tell much of anything. I was told after the radiologist did his review and the surgeon did hers, someone would let me know. Let me know? I mean can't they just tell me now? It wasn't like a quick look like a broken bone? Wait? They obviously didn't understand who I was. Waiting is not in my vocabulary. Impatient was. Ha, after that day I learned that I had to be patient. You learn a lot of things very quickly when you become a parent.

When we arrived back in the NICU we sat by Isaac's bedside and waited. I'm not sure what time we heard anything but when we did, we kind of knew what we were going to hear. He needed to have the suction biopsy to confirm the diagnosis but the surgeon was 99% it was Hirschsprung's. She told us tomorrow, which was Tuesday the 11th of October, she would do the biopsy but it would take at least 2 days to get the results. Another waiting game. In the meantime, nothing with his care would change. So there I sat, all day, all night watching my baby. I was able to hold him most of the time.. I was so thankful I could hold him. It was difficult with 3 leads, 2 IV's, a tube in his mouth and one coming out of his rear but I made it work because I know he needed me to hold him and cuddle him. He slept mostly but when he would open those eyes and see me there, he would just stare at me. I knew he was being strong for me. I smiled at him all the time. I never liked him to see me crying. I felt like he would do better if I kept my spirits high and smiled a lot. I told him about his nursery at home, about his monkeys on the walls, about all the toys and clothes we had for him. (Side note: I am sitting here in tears reliving this) But telling him all this made me so sad inside. He was supposed to be home enjoying all of this NOW. Not laying in a bed attached to all these machines. I just wanted to fast forward to that day we would bring him home.. Whenever that was..

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...