Every parent dreams of having a healthy baby. Unfortunately for some families this dream is not a reality. September is Neonatal Intensive Care Awareness Month. NICA month is designed to honor these families and their infants while encouraging services to meet their needs. Join me and thousands of others in spreading awareness this month. Start by visiting www.nicuawareness.org
It was 9 long weeks of tortured goodbyes at night. My heart was torn out and I left it with my small, fragile, helpless baby boys every single night. I too, was helpless. Seeing them for the first time and more importantly than that hearing them for first time was the happiest most exalting. The pregnancy of our twins was rough; really rough. We were on scalpel’s edge for 2 weeks near the end of the pregnancy as we faced the possibility of surgery. My wife’s Perinatologist in Houston was sure that she would have to have the surgery or we would lose both boys.
By the grace of God (and Christina following the doctors instructions to a “T” and eating a metric ton of Greek yogurt and other protein. we didn’t have to have the surgery and came back home from Houston after 2 grueling weeks. So, after half-way preparing myself for worst-case scenario that I might not ever get to see my boys or I would but they may pass shortly after because they were too early. It was such an amazing feeling to hear them cry. I have heard people describe this feeling by saying that it is indescribable and overwhelming. I now see what they meant and agree. It is beyond mere mortal words.
So too is the feeling, however of being perched so high atop the peaks of heaven in mere minutes when I came crashing down back to reality with the anesthesiologist asking my wife if she is ok and her reply was “No...I feel a lot of pressure and can’t breathe very well”. She was fixed up quickly by the anesthesiologist. Our boys could not be fixed up so quickly, however. There were a team of 4 people working frantically around each baby. I could hear suction and sticky mucus being sucked away and gasping cries in between. When I heard silence I got extremely worried. I watched as the team measured and weighed and put a tube down their mouths because the silence I heard was my little, red, way-to-early son’s not breathing. As I stood there helpless, battling the fall to reality trying my hardest to stay aloft on the cloud of euphoria that I was just on, I remember a strange happening. Dr. Smith, my wife’s Perinatologist, asked if I wanted to see the placenta because being interested in medicine I always had a million questions for her and she thought she would demonstrate an answer for me. In my desire to withdraw from situation a little I said yes. Then I finally fell all the way to the hard unforgiving surface of reality when the nurse practitioner who was working Aedan asked if I was ready to take him to the NICU. I said yes was just going to follow her, but she said here and show me how to hold my baby for the 1st time. I went and took pictures of the boys and got their weights as the nurses talked to me about how things worked in the NICU and what would happen. The next few days were very tiring but great because we were always so close while my wife was still in the hospital.
My wife and I learned a lot about ourselves and truly tested our limits of what we could handle. After such a hard and anxious pregnancy with Twin-to-Twin Transfusion Syndrome I couldn’t help but think of a quote from Mother Teresa “I know that God will not give me more than I can handle, but I wish He didn’t trust me so much”. We were fortunate to spend many days with boys in the NICU. At first when the “rules” prevented us from holding them all the time it upset me. I didn’t want other people telling me when and what I could do with my child. Plus all I wanted to do was hold and comfort my babies. Throughout the 9 weeks I did resent the fact that we were always told what to do and were on someone else’s schedule. Feeding was a mix of emotions. It was so wonderful because it was a chance to hold the boys, but it was so hard to have to put them back in the isolettes or in the very least it was frustrating if the boys were no drinking well from the bottle that according the “rules and someone else’s schedule” we hated to give up on them after 30 minutes and feed them using the tube down their noses. I also felt like a failure when I couldn’t get them to eat from a bottle.
I am so grateful for all the staff that took care of them. Especially two of the staff in particular; Carol Ann, the boy’s primary nurse and Debbie Bradley their occupational therapist. They were so critical in their care and getting them home to us as healthy as they are. And they may not realize it, but they even cared for my wife and me even though we weren’t their patients. I began to realize the longer that we were there that we had become the favorite parents because of what they said about how we took care of our babies and each other, and were always there. They also did things like always made sure that there was at least one comfy chair to sit in. The NICU that the boys were in runs on a limited budget. So for things like comfort of non-patients it is largely up to donations for things like chairs so they mostly had uncomfortable, hard, back wrenching rocking chairs. So you can imagine that it was difficult and a sort of battle between my heart and my body after I had been holding a baby for a while.
It was such a long ordeal while we were going through it. And many days, especially in the beginning when the boys were on ventilators and things seemed more frightening, I didn’t know if I’d make it. The nurses helped in that area too. They said one day you will look back at this and it will just seem like a distant memory, a little flicker of time and it won’t seem so bad. It is true somewhat. It’s a strange duality; it stills seems like it lasted so long and at the same time short as if it flew by. I still remember the fear, pain, and anxiety, but it is a little fainter.
Having the Carol Anne nurses and Debbie teach us how to take care of the boys was invaluable. Other people have a baby in the hospital and take their baby home after about 2 days. Then they are left totally on their own; responsible for a human being. We had experts teaching how to be good parents for 9 weeks. For that I am thankful. Debbie was such a blessing and we believe one of the biggest reasons that the boys got to come home as soon as they did. Their biggest hurdle and last one (except for Conor he was/is our stubborn one and would not let go of the need for the tiniest amount of oxygen) seemed to be eating. Debbie was so good with them it was like her hands had been touched and blessed by God to work His tiny precious creations. She was amazing and got them to finish their bottles almost every time. We on the other hand struggled a lot. Carol Anne was very patient with the boys and so kind and sweet to them. You could tell that if she could, she would take them home in a heartbeat. But we learned much from them and did the exercise that Debbie wanted the boys to do religiously; even after going home. I think that is another reason they are doing as well as they are.
Now it has been just over a year since we have brought the boys home. What a wonderful year it has been. Everyday has been a blessing and we thank God every night for it when we say our prayers with the boys. This was routine that started in the NICU, because we prayed that God watch over our baby boys overnight while we were away from them. We had to trust that He had taken care of all of this far. It still made those nights very difficult just to walk out of their rooms. I prayed for courage to walk out. I prayed that the night nurses would be on their best game. I prayed for anything that I left out. That routine has continued to our house now that we actually get to tuck them in their own beds. We took every opportunity that we could in the NICU to hold and love on them and that routine is one thing that will never change as we watch them grow up.