The long "roller coaster ride" ahead......

Since Colin's birth, many people and organizations have described having a preemie as a roller coaster ride. However, another mother of a preemie described having a preemie specifically as one roller coaster ride. It is like Space Mountain at Disneyland. 


With other roller coaster rides, you usually can see the dips and turns ahead. On Space Mountain, you are in the dark, and while you know there are dips and turns, you can't see them when they happen. 


I would say that is exactly how I feel about Colin's situation. Everyday that gives me a few moments of happiness is foreshadowed by fear that at any moment we might face a huge dip, or a slight turn. 


To help others understand some of the issues we face, here is an overview of some of the issues that Colin has, is or will face as a preemie in the NICU (Newborn Intensive Care Unit). Many of these definitions are taken from a booklet I was given written by the March of Dimes.


1. Anemia: Preemies are often anemic, which means they do not have enough red blood cells. Preemies may not have enough time to store iron, which makes red blood cells. While some infants can be treated with dietary iron supplements or drugs that produce red blood cells, in Colin's case, his needs have been immediate, so they have used blood transfusions. While I started to count the number of times he had blood transfusions when he was first born, I have lost count after 6 (and we are only on day 13 since his birth!). 


2. Breathing problems: While there are NUMEROUS breathing conditions that preemies face, for now, I'll just say that Colin is using a mechanical ventilator. It delivers warmed and humidified air to his lungs through an endotracheal tube (a small, but long tube inserted down his mouth into his windpipe). As of right now, he only needs some extra oxygen to breathe, however, it can change depending on how distressed his body and lungs are. 


3. Patent ductus arteriosus (PDA): This is the most common heart problem in preemies. Before birth, much of a fetus' blood goes through a passageway from one blood vessel to another instead of through the lungs, because the lungs are not yet in use. This passageway should close soon after birth, so the blood can take the normal route from heart to lungs and back. Since Colin was a preemie and it didn't close at birth (usually only for full term babies), he had to have the surgery to close the hole. They cut a 2 inch incision in his back at his shoulder blade, pushed his lung aside, and used a staple to close the gap. Pretty simple, right? (if you can't tell, this is said in my "sarcastic" voice).


4. Feeding: Colin is a LONG way off from being breast or bottle fed. For now, he is fed intravenously through his belly button with sugar and essential nutrients until he can successfully breathe on his own and his intestines are much stronger. 


5. Intraventricular hemorrhage (IVH): This refers to bleeding in the brain and is most common in preemies his size. This is the scariest of the things he face, although at the moment, we don't know the long term damage yet. This bleeding usually occurs in the first 4 days of life, and occurs near the fluid filled spaces in the center of the brain. The brain bleeds are graded from 1 to 4, with 4 being the most severe. Colin has a 3 to 4 brain bleed, and while it hasn't continued bleeding, the vessel has not changed. This means it can either erupt again, or may require a shunt (a drainage hole in his head). Grade 3/4 cases can cause neurological defects, some as severe as Cerebral Palsy. 


6. Jaundice: Occurs when the liver is too immature or sick to remove a waste product called bilirubin from the blood. A bright light can help the body break this product down, and that is why in some pictures you have seen Colin wearing his "sunglasses". As of right now his bili levels are down, but from time to time depending on his surgeries, this could go up again. 


7. Keeping warm: Preemies have a hard time controlling their body temperature, and don't have enough body fat to prevent loss of heat. This is why Colin is kept in the incubator, and probably will be in it for a long time. A baby will grow faster if they can maintain a temperature of 98.6


8. Necrotizing enterocolitis (NEC): This potentially dangerous intestinal problem most commonly affects premature babies. As of right now, he doesn't have it. However, he had something similar to it, and this could lead to NEC if he is not watched carefully. It was called Focal Intestinal Perforation (FIP). This was why he was transferred to CHLA. This small tear in his intestine caused "free air" to accumulate in his abdomen, and the only solution was to create 2 drain holes in his tummy to release it. Every day they monitor the drain holes, and for right now, they believe that the tear has already repaired itself, so hopefully soon the drain holes will be taken out. However, if his intestines suffer because of this, he could develop NEC, so they are watching the intestines closely. NEC could cause him to have feeding problems, abdominal swelling, and could require sections of his intestine to be surgically removed. Scary stuff.


9. Retinopathy of prematurity (ROP): This is an abnormal growth of blood vessels in the eye that can lead to bleeding and the formation of scars, which would result in blindness. We don't know if he has it yet, but at some point later, he will be examined for this. 


Are you exhausted yet? Because I am. However, so far, the most scariest thing we had to face happened in the first 24 hours of his life. It was the 2nd night after his birth, and he seemed to be resting fine. I wasn't sure how I was going to sleep again after my first restless night of sleep, so the nurses suggested that I take the Valium that was prescribed for me. 


I took the full dose (2 pills) at 10pm, and proceeded to go to sleep. I was then woken up at 2am by 2 nurses who calmly but nervously informed me that the neonatologist doctor in the NICU wanted me brought to the NICU immediately because of an issue with Colin. 


Being so out of it, I had to be carried on both sides by the nurses, but as soon as I was brought in the NICU, I soon became hyper-alert. 


4 people were perfoming manual CPR on Colin because his heart rate was rapidly declining. In a sense, his heart was stopping. All the nurses in the NICU were watching this horror scene unfold. And as his mommy, they gave me a seat right at his bedside. 


I had no idea what this moment meant. Was it the end? Was there anything I could do? Was this a final "dip", or was it just a mild "turn". This was when my roller coaster ride as a preemie mommy began. 


For 30 minutes I watched in horror as they performed manual CPR on Colin. I had the brief insight to ask the nurses to call Rich so he could come down to the hospital. He made it during the last 10 minutes of the ordeal. 


But until Rich arrived, I came to understand the depth and magnitude of a mothers love. Because even though I was painfully crying the whole time, I knew that Colin had to know that everything would be ok, no matter what the outcome. So I decided to repeat these 2 sentences out loud for him to hear: 


"Colin, I love you sooooooo much. Please give me a chance to be the best mommy ever."


"God, please let him breathe, please let him breathe". 


That was it. For 20 minutes straight until Rich came. And then just as Rich arrived, the doctors determined that his heart was stabilizing, and slowly they worked to get him stable. Was it a miracle? Modern medicine? I think it was a little bit of both. But either way, I had my little boy back. 


So while each day we face all these problems, after facing the depths of how low this journey can go, I know that it won't help my situation to fall apart now. Colin is still here. Each day that he breathes is another day I can show him that no matter what, I can be the best mommy ever.


For now I'm just trying to learn to get used to this roller coaster of a ride. Wait, scratch that. I don't want to get used to this roller coaster ride. I really want off. But for now, I'll ride it out till it's done. Then I'll never look back.......or maybe only when I read this blog..........