A Month and More

Well, it's been over a month that Christopher has been on the outside. By outside I mean not in my belly. Something changed in me on his one month birthday. I suddenly felt positive and hopeful. The first week of his life I was just in shock, trying to assess everything that was happening. The second week was major ups and downs for me. The third and fourth week were slowly climbing back to the surface. But then something happened on his birthday, he no longer had an oxygen tube in his nose.

He was completely breathing on his own. I really worried that we might have to take an oxygen monitor home with us as I have read many preemies need this because their lungs are the last to fully develop. Not only was I relieved he could breath on his own, but I could see his face! The oxygen tube had to be held in place by two huge pieces of tape on both cheeks. Even though I could see his eyes and nose and lips, it was his cheeks that mystified me. You wouldn't think cheeks would be a big deal. Their round, everyone has them, and they are flesh colored. So what. Well, they are a big deal when you can't see them.

I walked into his room on his birthday. Yelled out happy birthday to him as I put my purse down. Walked over to his crib and a huge smile came over my face when I saw no oxygen tube. He looked up at me. Did his usual facial expressions, but they were different because I saw what his cheeks did when he made them. Then, he smiled. I know it's just gas, but every time he smiles my heart explodes. Only this time I saw there were dimples involved. He has dimples when he smiles! The tape covered that part of him, but now I know.

Of all the milestones he has accomplished in this past month (being moved to a crib from an incubator, taking breast milk, hitting 5 lbs - now 6 lbs, etc.) not having the oxygen has affected me the most. Logically, for the past week or two I have known he would be ok, but emotionally I still felt like I did that first week. Now, seeing all of him has made me so happy. Sure he still has a few milestones to accomplish before he heads home and once he is home we will still have to monitor his heart with some issues he may still have, but I think he has turned a corner. I feel a sense of calm. My heart is telling me everything will be ok now.

3 Weeks

The first 3 weeks of Christopher’s life have been a rollercoaster ride for me. The hospital released me the day of his birth because I was physically doing so well and they knew I wanted to go see Christopher. They had to transfer him to the Childrens Hospital that had a NICU. So, later that night a friend came over to watch Freddy, while my husband and I went to the NICU to see our new son. The nurses at the NICU were so kind and helpful. I felt comfortable leaving him in their care. We left and went to bed around 11pm that night. At 11:15pm we got a call from the hospital that Christopher’s heart rate went up over 200 beats, but they managed to bring it back down. They just wanted to let me know. My husband got on the phone and asked if this was an emergency, should we come to the hospital. They said no, they were just updating us. He told them only contact us for emergencies, because he knew how I would react. We hung up the phone and I melted down. I don’t think I had cried that hard in years. I just kept saying, “I haven’t even got to hold him yet.”

I cried a lot that first week. Everything was new. Even the doctors were learning about Christopher, what was normal for him and what wasn’t. I usually cried several times a day. The only time my life seemed normal or a smile would appear was when I was with Freddy. As much as Christopher needed me, so did my other son. He was too young to come into the NICU, and therefore has never met his little brother. He is too young to understand what’s going on, so he still needed playtime and nap time and cuddles. As much as this takes time away from Christopher, I am so grateful for it. I think if I didn’t have Freddy in my life at this moment, with all I have to deal with in regards to Christopher, I would have had a nervous breakdown by now.

The second week, I cried a little less, maybe once or twice a day, but I felt better. I was getting used to the routine and Christopher’s issues. What was serious, what wasn’t. Freddy started his new daycare and I felt more like a normal human again. Until the doctors told me the test results came back from his birth. He tested positive for Cystic Fibrosis, but not for the gene.  They said they think it’s a false positive because it’s genetic disease and since he doesn’t have the gene, it’s likely he doesn’t have it. Even though the doctors were telling me not to worry, I had a meltdown. I woke up the next day with what felt like the worst hangover on earth, only I don’t drink. It’s funny, when something as stressful as this happens, out of the blue you start to feel like a zombie. Just going through the motions. I kept thinking of that scene from Lock, Stock and Two Smoking Barrels when the main character in the beginning of the movie has all his money taken from him at the gambling table. He just walks out of the room in a daze. That’s exactly how I felt.

Then week three happened. I started to feel better again. My husband and the doctors kept reassuring me. I started to think positively. Just when I thought things were improving, I got punched in the stomach again. My son has Brady episodes. No, not the tv show from the 60’s with the maid Alice. It involves his breathing and heart rate. The technical term is Bradycardia. Suddenly his breathing will slow, his heart rate will drop and he will turn grey. The worst I had seen it, his heart rate dropped from 160 to 70 in a matter of seconds, until this week. He had been doing well. They had recently put him on reflux medicine, which helped his Brady episodes. I was watching him start to drift off to sleep while the oxygen technician was doing her weekly check of his oxygen machine, when the brady happened. I immediately started to pat him on his butt, as that usually helps him out and his heart rate starts to go back up. But it didn’t this time. The HR monitor just kept going down...80..70..60...50....40. My heart sunk. He wasn’t just turning grey, he was grey. The nurse raced in, picked his limp, grey body up, started rubbing his back and bouncing him up and down. After about a minute he was breathing, turning pink and moving again. His heart rate went back up.

I was grateful for the nurse, but all my fears from the past several weeks returned in that one moment. I thought, “I just witnessed my son start to pass away in front of my eyes.” On the ride home the tears came, no that’s not right, the sobs came. I was shaking. Suddenly that scene from the Guy Richie movie was back and I was a zombie again.

The Birth

  
I was 31 weeks pregnant, exactly 2 months to the day of my due date. It was hot that day, very unusual for Chicago. The battery in the new mini van my husband and I purchased had died. As my husband, Michael, left for work he asked if I would be able to walk to Target to get a portable battery jumper. I looked at him and said it was too far for me. He said, “Ok, I’ll just stop by on my way home from work.”

That afternoon my 15 month old son, Freddy, was getting a little cranky so I decided I would try to walk him in the stroller to Target. Even though I had been in more pain than usual that day, I decided to try the walk. The heat didn’t bother me as I am from Maryland and used to hot/humid summers. Once we got into Target and the A/C hit me, the pain subsided. So, I bought the jumper and a few other things and headed back home. Once Freddy and I were home, we were both feeling a little better.

Then Michael came home that evening and I asked him to help out a bit more with putting Freddy down for the night as the pain had started up again and was more intense. Michael put Freddy down and I took a shower, hoping that would help me feel better. It didn’t. By 10pm that night the pain was more frequent and I thought if I just lied down in bed, it would subside. I was to see my new OBGYN in the morning (new, because I had just found out my health insurance didn’t cover the hospital my OBGYN would deliver at, so I had to switch hospitals, and therefore doctors) and would tell him of the pain I was having. By 11pm the pain was more frequent and at midnight I decided to time contractions. I noticed they were 5 minutes apart, so I woke Michael up and told him I needed an ambulance.

I really believed it was just a complication and I would be put on bed rest, so did Michael. So, I told him to stay at home with Freddy and I would call him if I needed him. When I got to the hospital, they examined me and told me I was 5 centimeters dilated and that I would have the baby that night.

I started to cry, but then the pain took over and all the tears were forgotten. They informed me that I couldn’t have anything for the pain, except an epidural, as anything else would affect the baby. Since the baby is premature they can’t risk anything that might affect him. I said, “Yes, give me an epidural.” All I cared about was making the pain go away. Since I had never been to that hospital before they had to take blood and test it to see if I was cleared for an epidural. So, about 45 minutes later they told me I was ok to have the epidural. They then checked to see how dilated I was, 10 centimeters. No epidural. Baby was coming now.

So, I pushed even though I was so very tired and my husband and child were at home. I only had the nurses, a doctor and midwife to help me through this. Lying to me by telling me if I pushed I would feel better, it would help with the pain...it didn’t. Finally, at 2:56 am Christopher was born. He entered the world crying and peeing all over himself.

This birth was completely different than the birth of my first son. Obviously, my first wasn’t a preemie and I had my husband at my side. What I mean is I didn’t emotionally feel the same. When Freddy was born I cried because I loved him so much and couldn’t take my eyes off him. When Christopher was born I was more relieved than in love. I heard him cry so I knew he was alive. I was so exhausted and wanted something for the pain, so I wasn’t as focused on Christopher as I was on Freddy. I think I was still in shock. Even though it was 3 in the morning, I had just given birth without medication and I hadn’t slept since the previous night, I couldn’t sleep. All the nurses kept telling me to get some rest, but I just couldn’t.

After a few hours, when I could finally get up and move around a bit, I was able to go to the nursery to see my son. He was 4lbs 7oz. His skin was red and slightly translucent. His chest a bit concave. He had tubes and wires everywhere and I wondered if I would ever be able to hold him. For a 31 week preemie he was big, but to me he was so tiny and fragile. I put all my thought, energy and prayer into asking God to please let him not be in pain and live.

Opening

This is my story. Not my son’s or family’s story, but mine. How I am experiencing life as a Preemie mom. The ups, downs and everything in between that a parent of a Preemie experiences. I’m not one of those people who sugarcoats things and consistently looks for the positive. I try to see the good, but there are times when things are too overwhelming and I need to let the negative out. So, if anyone is reading this, expecting to see uplifting words of wisdom from the NICU/Preemie world, you clicked on the wrong blog.