The kid was born! The initial shock of birth has gone.
After we were done at the recovery area we were moved to one of the maternity floor rooms. I remember walking over and pushing the crib very exited. All the nurses on the floor stopped over to look at the new guest. Being true to myself, I was joking all the way over. As I've said before, he was not at all pretty. Every time a nurse would walk over to look at the crib I would say "Say hello to my beautiful ugly child". Some would laugh, others smile, and some looked at the kid really sorry for him because he has an ass of a father. My wife told me several times to stop it, but we all know I did not.
That first night was a little rough, my wife was in some pain, Sebastian was not comfortable and I was beat. The nurses would come in to help with the feeding and diapers and so on. My wife had to wake up every so often to feed him as we wanted to do breast feeding from day one. Only the OR staff and the hospital Pediatrician saw him at birth. Our chosen doctor was on vacation and the practice did not sent anyone to check on him on birth day. They told us that the next morning the doctor that was covering would do the check up during his rounds.
Morning arrived and the doctor showed up. We were asleep and were awaken by one the nurses. He stayed on the room while they brought the patient from the nursery where he spent some of the night so we could rest. I've never seen this doctor before. There were about 6 doctors on the pediatric group and we got to see our chosen one and maybe one or to others. He did the minimal of introductions and proceed to check on Sebastian once he arrived, then our world just turned to shit.
As the doctor was looking at Sebastian, he was asking some questions about the pregnancy and birth. He then proceeded to point things that were out of the ordinary. There are ways to say things, and there are ways to say things. This particular doc chose all the wrong ones. I've never met such a horrible doctor, with worst bedside manners than this one. After all of this, we found out that no one at the hospital liked him and he was like that all the time. To see the disgusted face of the staff when we mentioned his name made us feel better. While examining the child he look at me and asked, "How didn't you noticed this or that or this other thing..." as he continued to list his findings. I was dumbfounded and confused. I've never seen a newborn, never held one before my son, and really had no idea how a child looks like at birth. To me, he was just like any other premature baby. His rudeness and lack of compassion destroyed any joy we had. We look back at this events are ache as there was no real joy, but anger and frustration.
When the doctor finished with the checkup, he said that our beautiful ugly child was to be moved to the NICU. He left the room and my wife and I were left alone with our child, not knowing how mild or severe whatever he had was. We were left there wondering, with no direction, no knowledge. My wife and I are people that need information. She is a microbiologist and I'm a software developer, we live with facts and information and having none was devastating. This is where the events start to merge and I lost track of time.
Some time after the doctor had left our room a team from the NICU showed up to take the kid there. When they got to the door I started to talk to the hospitals Neo-Natal doctor. I tried to be as far from my wife as possible while I talked to him. I wish I know his name as he is one of the best doctors I've ever met. He was a complete opposite to the pediatrician and a welcome relief for us. I bombarded the guy with question and he had no answers as he had not even had time to examine Sebastian. I asked about every possible syndrome and condition I could think of, and very politely he told me to calm down and wait, he did not even knew if Sebastian had anything at all.
The NICU team left with our precious little child and my wife and I were left on the room. Then, we decided that we had to let our families and bosses know of these new developments. She called her mom and I called my mother or sister, I don't remember. After that, I called my boss Carol and I remember leaving a message that I would need time off. I was crying while leaving said message. For the next few days, there was a lot of crying happening and had nothing to do with joy. I distinctly remember taking a shower that day, it had been way more that 24 hours since the last one, oh boy did I needed one, and crying in the shower like a school girl so my wife would not see me.
The feelings that one has while going through something like that are weird and strange. Unless you go through this, you would not understand, and as I write about it you may think I'm crazy and that I'm a horrible person. Our thoughts are dark, complex, confusing and some times plain evil. Takes a lot from a person to not go mad or let these feelings drive you to do something that you will most certainly regret. I bet that if you ask any parent that has gone though this, they will tell you something very similar. We prayed for our child, the realization of our love, to pass away rather than having a life of misery and pain. This was something that we did not tell each other at that time but years later while talking about those days. How can a parent love a child so much, that would much rather see them die than suffer? Not everyone is equipped to go through this, yet there are no classes or real support groups that will help you. Unless there is someone on your family going through this, you would not know. With all do respect to social workers, psychologists, clergy and the likes, you really have no idea how to really help during that initial shock.
That day, later on the afternoon, the same pediatrician from the morning came back. I had left the hospital to get some items at home as our stay would be longer than anticipated. All in all, it lasted 11 days. Our friends, that we think of them as family, had come over and one of them drove me home while the other stayed with my wife. This was the best thing that could had ever happened and everyone is better that I was not in the room.
Back to the doctor. He arrived to the room with a book in hand and a diagnose, or what he made up his mind about. My wife, alone with our friend, talked to him. He had a page marked on that book. The title of the book was "Child malformation and abnormalities" or something like that and he made sure she knew it belong to another doctor and we must keep the book safe. He expected that back. The page marked read "Smith-Lemli-Opitz" and he said "Based on my check up, you son has this. Here is some information, read about it so you learn what it is. By the way, how Hispanics treat children with disabilities? I've heard that they just locked them up, I need you to remember this is America and we do not do that". To say that I do not like this doctor is an understatement. For the next 10 days, every staff member at the hospital apologized to us. I left specific instructions with everyone that I did not wanted that doctor to be within 100 feet of my child or my wife. You do not, under any circumstances, tell that stuff to a woman that just gave birth, to a family of any race, and to any other human being. When we made our first visit to the office after we left the hospital I talked to every nurse and doctor and told them that if that doctor touched my child there would be trouble. I much rather had the office janitor give him a checkup or a shot that this jackass.
Our friends helped us stay sane, and they do to this day. No one should go through this alone. If not for them, it would had been so much more difficult.
The next few days are a blur of information, events, paperwork that have no time association in my mind. Although it was a horrible time, we got some valuable information and services that Sebastian needed. There are several things that stuck with us. Remember that NICU Neo-Natal doctor I mentioned before? He said that our son had only 2 advocates and those were us. We did not had to agree 100% with any doctor or health professional. If we did not like it, we had to look for more, if we were not satisfied with a service we had to be vocal and change it. He told us we had the power to make things happen and we better get to work. We've taken that advice to heart.
No one will care for your child more than you do, no one knows what he needs better that you do. We are the parents, we are the caretakers, we keep him well, alive and as happy as possible. If we do not do it, no one will, and as much as we hate having to do all of that, we do it because we love him.
No comments:
Post a Comment