When I went in for my 6 week check back at home, my doctor explained it a way that I would never have thought of. He told me that I could very well be mourning a loss. I hadn't lost my baby, but I had experienced a loss in a different way. I didn't have a "normal" birth. I didn't get to have that moment after the birth of my son where they lay him on my chest and I could look at him. To this day, I have absolutely no clue who cut Andrew's umbilical cord. I wasn't able to see my son until he was over 3 hours old, and I didn't get to hold him until the following day. It was perfectly normal to grieve over these things, but I don't think that I really did. I don't feel like I was cheated out of these moments because I knew all along that if any of those things had been possible, they would have happened.
Every birth story is an amazing event, and I don't think that mine is any more special than anyone else's. I do however think that when your child begins their life in a NICU, there are aspects of your birth story, and the hours, days, weeks, and sometimes months that follow that only a fellow NICU parent can truly understand.
Andrew Christopher - on the night he was born
The first time I saw my son was not right after he was born. In the OR I was able to glimpse a little bit of his leg through a sea of scrubs and gowns. This picture was shown to me in my recovery room a couple hours before I was able to meet my son. On this night, I still had no idea what was in store for us. I honestly didn't think that he would be in the hospital for more than about a week because they told me that he was breathing on his own, but just needed a little help.
The next morning, after a short and mostly restless night, I was anxious for 3 things to happen. 1. I wanted to go see my baby 2. I wanted those damn squeezers off my legs!!! 3. I wanted my catheter out. The "Squeezers" are the things they strap to your legs following surgery that inflate every few minutes and squeeze your legs to maintain circulation and prevent blood clots. They made me so miserable because I was just getting the feeling back in my legs from the anesthesia wearing off and I already had that "Pins and needles" feeling, and having my legs squeezed on top of that was terrible. Also, I had a reaction to all the drugs and was incredibly itchy all over for several days after Andrew's birth. (This got worse when I developed an infection under my incision and then had an allergic reaction to the antibiotics and got a rash all over my abdomen and legs.) The nurse told me that I couldn't take the Squeezers off until I was up and walking, and I couldn't get up and walk until the catheter was out. I said, "OK, take the catheter out and let me get up." She said that I couldn't get up until at least 12 hours post-op, except I could move to a wheelchair and go up to the NICU. Matt got me in my robe and took me up there.
Upon my arrival in the NICU I asked if I could hold him. Because he was so little, and had all his monitors, IV lines, and CPAP machine hooked up, I had to hold him wrapped up in his nest of blankets they had him in. When they placed him in my arms, I started to cry. It wasn't the typical new mother, brand new baby, tears of joy moment that is seen in every TV show or movie. In my case, as I cried and looked at my tiny son, I was apologizing to him. I was saying over and over again, "I'm so sorry. I'm so sorry. I tried so hard to keep you safe, and I wish I could have done better." This was one of those moments where the rational part of me was AWOL. Every time I look at the picture of the first time I held him, I remember those words I said to him.
I know beyond a shadow of a doubt that I did everything I could, as did the doctors, but that Andrew just wasn't able to make it full term and that he needed to be born early in order to survive and eventually thrive.
Andrew did thrive. He continually amazed all of us with his strength and determination. He was off the CPAP machine in less than 36 hours. I was at his bedside when they took it off and put him on a high flow nasal cannula instead. I watched as my tiny newborn son immediately and deliberately reached up and grabbed that tube and pulled it out of his nose. I thought, this had to be a fluke or an involuntary movement because no baby that new could have that kind of motor skill. The nurse replaced it and Andrew again reached up and pulled it out. Twice. In 10 minutes. The respiratory therapist who placed it was puzzled. He had to come and redo it and re-tape it more securely. Within another 24 hours, Andrew was off the nasal cannula and just breathing room air all on his own.
At all times there were at least 2 other babies in Room 6 with us, and usually there were 3 others. The occupancy of Room 6 was 4 babies, and sadly we were never at less than full occupancy for more than about 12 hours. We got to know some of the other parents, and we knew all the babies' names and a little bit about why they were there.
Every single day Matt and I talked about how grateful we were that our son was just so small and needed to get bigger and stronger, because aside from that he was perfectly healthy. The same could not be said for so many of the other babies that came and went from that unit. Some were transferred to Children's Hospital, some were stabilized and released, and sadly one poor little baby died. We counted our blessings and knew how very lucky we were. Even though Andrew's "events" seemed like the biggest and scariest thing in the world to us, we were continually reassured that these were all normal occurrences for a preemie.
I worked around the clock to make sure that Andrew had enough milk for every feeding, and in the beginning it was very hard work, and before too much longer, I probably could have fed all four babies in the room. I spent all day every day at his bedside, leaving only to eat, use the restroom, or go to the "Quiet Room" to pump more milk.
The wonderful night nurse that took care of Andrew for his first few nights was such an encouragement to us, and she urged me to spend as much time holding him and doing "Kangaroo care" (skin to skin contact) as much as I wanted because it was so good for both of us. I took a few naps that way, with Andrew and his wires and tubes carefully arranged and tucked in, and both of us wrapped in warm blankets.
It was a very strange thing to come to terms with, having a baby in the NICU. Andrew wasn't sick, per se, but he also wasn't totally healthy. He wasn't able to leave that room, and even though the nurses and doctors constantly told us how great he was doing, every day the reality of it would hit me. He wasn't just in a hospital nursery, he was in the Neonatal Intensive Care Unit.
My son was 13 days old before I ever saw his whole face with nothing at all attached to it. He was 27 days old before I could pick him up and move more than 6' away from his bed because he was tethered to the monitors. It took 3 tries for him to pass his carseat test.
Most people I know will never have to worry about those things, and I am so happy for them. I pray that no one I know will ever have to worry about these things. Most of my friends and family were constantly commending us for how well we were dealing with all of this, and as they did, I felt almost guilty that we had it so easy down there. My heart was breaking for the other families in the NICU, for the babies who were so much sicker than Andrew. Every day I thanked God for my beautiful son, and I prayed for the health of the other boys in the room, and for their parents' state of mind. I would feel guilty for feeling like we were going through so much when so many others were going through so much more.
It's a very bizarre thing to spend so much time there, and have that unit become your whole world. Matt and I would go for walks to get some air and we would laugh at the smallest things because we were so tired and so overwhelmed that the littlest things were hilarious to us. For example, when you get in the elevator in the parking garage, if you don't press a button, the elevator won't actually go anywhere. Sadly we stood in that elevator for a good 30 seconds before we realized that we weren't moving and that neither of us had pushed a button. We would sit by Andrew's bed, both playing on our iPads or texting or doing something and we would hear an alarm go off and immediately we would look at Andrew's screen and if it wasn't him, we'd go right back to what we were doing, while silently saying a quick prayer for whichever baby it was that was alarming. It got to the point where we would be talking with our visitors at Andrew's bedside and an alarm would go off somewhere in the room, and Matt or I would say, "Oh, that's just a Brady," (The screen would say "Extreme Brady" which means Bradychardia, their heart rate would drop alarmingly low) or "That's just an occluded line on an IV. Nothing to worry about." It became completely normal for us to toss around those terms and think nothing of it. It was more difficult for us to imagine leaving that room for good and not having all those monitors and alarms around us at all times.
All the doctors and nurses would tell us, "This will all be a distant memory for you before you know it." And each time we heard that, we would think, "Yeah right." In that moment it is hard to imagine ever being out of there, or ever putting this all behind you. We would watch those lights flash, and hear those bells going off and encourage Andrew to pull out of it by himself, because if he required intervention, it was an automatic 5 days more in the NICU. Each time an event happened we would feel more and more uneasy about taking him home, because how would we know if he had one at home without all the monitors?
I know that the doubts and fears we had were universal in the NICU. It's a strange sort of paradox. Each family's NICU journey is simultaneously unique and the same. None of us thought we would be there, all of us worried about our babies and how we would cope, all of us wondered how long our lives would revolve around those rooms. And while I can't say this with any authority, I am guessing that all of those other mothers also had moments of fear and guilt and self-doubt where they berated themselves for not being able to do more for their child.
On the first day that we came home and left Andrew there, it was a Friday, and one of the worst days of my entire life. It was the day after he was originally slated to go home, but his events and failure of the carseat test had made that impossible. I knew that leaving the hospital was the best thing for us to do because we needed desperately to have a little time away. But as much as I knew that, it couldn't penetrate the wall of doubt and guilt surrounding me that day. I took Andrew out of his bed, and sat down in the recliner and held him. I broke down in tears and sobbed, "I'm so sorry Baby. I wish that I could have kept you in and safe and growing big and healthy. I wish that I could have done better for you. I'm so sorry. I love you so much, and I'm so sorry."
The nurse taking care of Andrew's neighbor heard me and she got up from her charting and came over to me and said, "You can't do that to yourself. You can't blame yourself. You did everything possible, there was nothing you could have done differently and none of this is your fault. You need to believe that." She told us that we needed to enjoy our time away and not feel guilty, that we needed to take advantage of the most expensive babysitters we would ever have, and just let them take care of Andrew while we took care of ourselves. She got me a box of tissue and gave me a big hug and told me again to stop blaming myself.
I am so glad that she was one of the nurses working the day we took Andrew back to visit, and she got to see how big and healthy he is now because she helped me through one of the darkest moments of my life, and I will always be grateful to her.
We have been home for almost 12 weeks now and Andrew is absolutely thriving. He is gaining weight at a rate that both stuns and pleases the doctors. He is a happy, healthy boy, and a smile from him makes my entire world better. And, just like everyone said, those weeks in the hospital have faded to a memory. Every day that passes, those first weeks fade further and further, they have lost their sharp focus in my memory, and I don't think about it as often.
My hope is that other NICU families who are in the midst of their journeys would know that they are not alone. That the feelings they feel, the fears and doubts they have are all a normal part of this process, and that there are many others who have been where they are now. As corny as this may sound, I often thought of the Barry Manilow song, "I made it through the rain." The line, "I made it through the rain, and found myself respected by the others who got rained on too, and made it through" played in my head a number of times. I don't know about the "respected" part, but we made it through the rain, and we know others who got rained on too and made it through. And that is what I would want to share with those going through it now, you can make it through. I know that not every family has a happy ending to their NICU journey. I know that to some, we had it really easy. Andrew was only there for 27 days and he came home with no monitors and no serious consequences of his premature birth. We were incredibly blessed, and I will never take that for granted.
I've heard the old saying that there are no atheists in a fox-hole, and while I don't know how true that is, I know that the NICU was my fox-hole and that I could not have made it through without my faith in God and my ability to trust in His plans for Andrew and me.
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