Monday, March 31 at 1:26 pm my son made his debut. It was a new experience for me, as I had delivered my first son vaginally--I can tell you a c-section is not even close to similar. It's very strange in fact--clinical not magical. But, he came out and he was cute from the get go. He was a bit puffy, as my blood pressure had been low so they pumped me with 3 liters of fluid before the c-section, which of course puffs the baby up as well. Because of this, his birth weight is a bit inflated, at 6 pounds 10 ounces. He quickly lost 6 ounces, as most of it was water. But, either way he was a healthy weight.
What was hard, what I wasn't expecting, what hit me like a freight train was shortly after birth, my son had to be admitted to the NICU and intubated. I will never in my whole life forget the moment the NICU doctor came into my recovery room to tell me. Sometimes, and especially in moments like these, I wish I hadn't studied health and nutrition. I wish I didn't know how bad that is--that I was ignorant of the ramifications of needing to be intubated at birth. It would be so much easier. But, I do know--I know of the negative side effects of intubating. I know it is not a decision that is taken lightly, and for him to be intubated, is a big big deal. She said she imagined he would be in the NICU for 2 to 3 weeks. My heart was in a million pieces.
I was stuck in the bed for the next 10 hours. I couldn't move. I couldn't go see him. I hadn't even held him. All I could think was, "What have I done to that poor innocent child?" All of this seemed like it was my fault--he would not have been born at 36 weeks if I hadn't gotten cancer. They tried to get me to sleep, but I knew I was cleared at 3:00 am to go see him and there was no way I was falling asleep. I laid there imagining the worst. Nothing was as bad as what I had in my head. My mother and husband went down to the NICU to see him. I asked my mother to take a picture. I needed to see for myself what he looked like. I needed to know. It was upsetting to my husband, he wanted no pictures of our son this way. I understood that feeling, but I had no choice. I needed to see. As you would predict, it didn't look as bad as I had imagined, but it was still my son in an incubator unable to breath on his own. It was a pain I can not describe.
Around 8 pm my room phone rang. It was the NICU doctor who had come to visit me. The sound of her voice made my stomach sink, what had happened? However, she was calling to tell me that my stubborn, strong, and feisty son had fought his way back (including scratching numerous nurses and doctors) and after just 4.5 hours on the vent he was off!! I could not believe it. I had yet to see him, and he'd already improved to the point that he was off!! He was now on what is called a CPAP--continuous positive air pressure. This is FAR less invasive and not as big of a deal. I knew what this was--and was much calmer knowing that was the situation. He was still not happy and NOT a fan of the CPAP, he pulled at it regularly, but he was doing better then anyone expected.
Finally 3 am came. I had called my best friend in California and made her talk with me late into the night. The nurses came and gave me the evaluation to assure I could stand, move around, etc. They got me a wheel chair and I was wheeled to the NICU. It was very strange to enter the NICU for the first time in the middle of the night. All the rooms are darkened, with the incubators glowing soft lights. Some incubators have the blue glow of bilirubin lights. Its very ominous.
We came to my sons room. It was amazing to be there to see him. I wanted desperately to hold him, but that was not going to be possible for a while. The nurse on duty kindly came in and lowered the incubator to my level in the wheel chair. She spent the next 15 minutes talking me through everything. Every cord, every test, every detail of my sons first 12 hours of life. She told me how he had already defied the doctors by fighting his way off the vent much faster then anyone expected. He was strong in spirit and physically. He had hit the nurses and doctors with his little limbs as they tried to put the different machines on him. As a newborn, he was able to have his IVs through his umbilical cord. This is a huge bonus, as they can not feel it and it is perfect access. It was hard to see his little wrinkly body, but I was able to reach my hands into the incubator and stroke his little head--he has so much hair. I could touch his little fingers and toes. I have no idea how long I sat with him before I was in too much pain and had to return to my bed. But, as I left the nurse let me know when I was in his presence it was the calmest he had been.
The next few days all blur together. Me trying to recover from major surgery, all the while trying to visit him in the NICU when I could. I was so exhausted and sleeping so much, but whenever I wanted to they would happily take me down to the NICU, day or night. The nurses and doctors were amazing. About 24 hours after he started the CPAP, they called to tell me he was off! He had again defied the doctors and fought his way back. He was breathing room air and fine. He had however developed jaundice, a very common affliction in newborns and easily treated with special lights. However, because of the jaundice, they couldn't remove the lines form his umbilical cord, so I couldn't yet hold him. He was still struggling to keep his temperature up, so was still in the incubator. But, he was progressing at lighting speed. Each time we talked to the doctor, their prediction for how long he would need to be there was shortened. 3 weeks, 2 weeks, 10 days, 7 days, etc. Yesterday we learned, he will be coming home on Monday morning, having spent 1 week in the NICU.
He is now in an open crib, meaning he is managing his own body temperature, and he is off the bilirubin lights. Our last issue is eating. He finds eating to be very exhausting and falls asleep during feeds. It is a struggle to wake him up and get him to finish the bottle. He also can't quite drink the goal the doctors set for him of 55 ml every 3 hours. We had to max out at 45 ml. He also is very inefficient at eating, a common issue. Basically, he swallows a lot of air. You have to burp him every 10 ml to make sure he won't spit it all back up. He is sleeping at an incline to be careful of reflux, another common issue.
We had to watch this video about taking your premature infant home. Most of it was not relevant to us, as they were talking about babies born at 23-33 weeks. However, it was nice to hear that the thought of bringing home your baby from the NICU can be one of excitement, relief, and fear. That is exactly how I feel. I am happy he is deemed healthy enough to come home, but terrified to take care of him. He seems so much more fragile then my first son. He is so small. I am worried about so many little things. I am sure the coming weeks these fears will lessen, just like every other new thing I have faced in my journey these past few months. However, adding to the stress is the fact that my next hurdle in this journey, my last 4 rounds of chemo, start 7 days after he gets home. That chemo alone is worrisome. It is a new medicine with new side effects. So, for a second time, I will be waiting for the "bomb" to go off as the chemo settles into my system. So we will have a new baby, a newly jealous 2 year old, and a very tired mom--it's going to be a serious trek through a minefield of emotions.
What was hard, what I wasn't expecting, what hit me like a freight train was shortly after birth, my son had to be admitted to the NICU and intubated. I will never in my whole life forget the moment the NICU doctor came into my recovery room to tell me. Sometimes, and especially in moments like these, I wish I hadn't studied health and nutrition. I wish I didn't know how bad that is--that I was ignorant of the ramifications of needing to be intubated at birth. It would be so much easier. But, I do know--I know of the negative side effects of intubating. I know it is not a decision that is taken lightly, and for him to be intubated, is a big big deal. She said she imagined he would be in the NICU for 2 to 3 weeks. My heart was in a million pieces.
I was stuck in the bed for the next 10 hours. I couldn't move. I couldn't go see him. I hadn't even held him. All I could think was, "What have I done to that poor innocent child?" All of this seemed like it was my fault--he would not have been born at 36 weeks if I hadn't gotten cancer. They tried to get me to sleep, but I knew I was cleared at 3:00 am to go see him and there was no way I was falling asleep. I laid there imagining the worst. Nothing was as bad as what I had in my head. My mother and husband went down to the NICU to see him. I asked my mother to take a picture. I needed to see for myself what he looked like. I needed to know. It was upsetting to my husband, he wanted no pictures of our son this way. I understood that feeling, but I had no choice. I needed to see. As you would predict, it didn't look as bad as I had imagined, but it was still my son in an incubator unable to breath on his own. It was a pain I can not describe.
Around 8 pm my room phone rang. It was the NICU doctor who had come to visit me. The sound of her voice made my stomach sink, what had happened? However, she was calling to tell me that my stubborn, strong, and feisty son had fought his way back (including scratching numerous nurses and doctors) and after just 4.5 hours on the vent he was off!! I could not believe it. I had yet to see him, and he'd already improved to the point that he was off!! He was now on what is called a CPAP--continuous positive air pressure. This is FAR less invasive and not as big of a deal. I knew what this was--and was much calmer knowing that was the situation. He was still not happy and NOT a fan of the CPAP, he pulled at it regularly, but he was doing better then anyone expected.
Finally 3 am came. I had called my best friend in California and made her talk with me late into the night. The nurses came and gave me the evaluation to assure I could stand, move around, etc. They got me a wheel chair and I was wheeled to the NICU. It was very strange to enter the NICU for the first time in the middle of the night. All the rooms are darkened, with the incubators glowing soft lights. Some incubators have the blue glow of bilirubin lights. Its very ominous.
We came to my sons room. It was amazing to be there to see him. I wanted desperately to hold him, but that was not going to be possible for a while. The nurse on duty kindly came in and lowered the incubator to my level in the wheel chair. She spent the next 15 minutes talking me through everything. Every cord, every test, every detail of my sons first 12 hours of life. She told me how he had already defied the doctors by fighting his way off the vent much faster then anyone expected. He was strong in spirit and physically. He had hit the nurses and doctors with his little limbs as they tried to put the different machines on him. As a newborn, he was able to have his IVs through his umbilical cord. This is a huge bonus, as they can not feel it and it is perfect access. It was hard to see his little wrinkly body, but I was able to reach my hands into the incubator and stroke his little head--he has so much hair. I could touch his little fingers and toes. I have no idea how long I sat with him before I was in too much pain and had to return to my bed. But, as I left the nurse let me know when I was in his presence it was the calmest he had been.
The next few days all blur together. Me trying to recover from major surgery, all the while trying to visit him in the NICU when I could. I was so exhausted and sleeping so much, but whenever I wanted to they would happily take me down to the NICU, day or night. The nurses and doctors were amazing. About 24 hours after he started the CPAP, they called to tell me he was off! He had again defied the doctors and fought his way back. He was breathing room air and fine. He had however developed jaundice, a very common affliction in newborns and easily treated with special lights. However, because of the jaundice, they couldn't remove the lines form his umbilical cord, so I couldn't yet hold him. He was still struggling to keep his temperature up, so was still in the incubator. But, he was progressing at lighting speed. Each time we talked to the doctor, their prediction for how long he would need to be there was shortened. 3 weeks, 2 weeks, 10 days, 7 days, etc. Yesterday we learned, he will be coming home on Monday morning, having spent 1 week in the NICU.
He is now in an open crib, meaning he is managing his own body temperature, and he is off the bilirubin lights. Our last issue is eating. He finds eating to be very exhausting and falls asleep during feeds. It is a struggle to wake him up and get him to finish the bottle. He also can't quite drink the goal the doctors set for him of 55 ml every 3 hours. We had to max out at 45 ml. He also is very inefficient at eating, a common issue. Basically, he swallows a lot of air. You have to burp him every 10 ml to make sure he won't spit it all back up. He is sleeping at an incline to be careful of reflux, another common issue.
We had to watch this video about taking your premature infant home. Most of it was not relevant to us, as they were talking about babies born at 23-33 weeks. However, it was nice to hear that the thought of bringing home your baby from the NICU can be one of excitement, relief, and fear. That is exactly how I feel. I am happy he is deemed healthy enough to come home, but terrified to take care of him. He seems so much more fragile then my first son. He is so small. I am worried about so many little things. I am sure the coming weeks these fears will lessen, just like every other new thing I have faced in my journey these past few months. However, adding to the stress is the fact that my next hurdle in this journey, my last 4 rounds of chemo, start 7 days after he gets home. That chemo alone is worrisome. It is a new medicine with new side effects. So, for a second time, I will be waiting for the "bomb" to go off as the chemo settles into my system. So we will have a new baby, a newly jealous 2 year old, and a very tired mom--it's going to be a serious trek through a minefield of emotions.
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