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...
