Tuesday 

I wake up early. I’m going home today. I hit the shower, fix my hair and apply my make up. Mom gets ready too.  

I’m going to see my baby today.

That’s all I can think about. 

Dr. Helling arrives at 8:30 a.m. and says I can go home. He wants me to take it easy – keep my feet up, use a wheelchair while at Children’s, etc. No problem. Just get me out of here. 

It takes forever to get released. I can’t put my clothes on yet because they need to remove my staples. I’m dreading this, but if it gets me out of here they can do whatever they want to me. I call Children’s to check on Baby Sharpin. The nurse’s name is Crystal. Crystal informs me that he is sleeping a lot at not eating much. I tell her I’m not surprised since that is how he acted on the first day. He seems to prefer sleep in the morning – much like his mom. 

I try everything to pass the time, but I cannot concentrate. My lunch arrives, so I focus on that. Vince arrives as I finish my lunch. It’s a waiting game. The nurse comes to remove the staples around noon. It hurts. A lot. I have to keep telling myself that this is the end of it and it means I can go home. Vince and Mom are packing up my stuff.  

Once the torture is over I get up and change clothes. I can leave! Vince pulls the car around. We wait forever for the wheelchair to arrive. I wonder if they would notice if I just walked out?  A good 15 minutes go by before the chair arrives. WOO HOO! I’m out of here! 

Mom drives me home in my car and Vince drives his truck home. It’s strange to be going home without my baby, but at least I get to see him today. The plan is to go home, drop off my stuff, wait for Jake to get home from school around 3:00, and then head to Children’s to see our son. We decide that I will not spend the night at Children’s. I still need to take it easy.  

We arrive home and Vince unloads the car. It feels good to be in my own house. I feel horrible – the staple removal hurt a bit and left me tired – but I am still happy. I am going to see my baby today. We talk about possible boy names to pass the time. Nothing sounds right. But, it is a nice discussion to have. 

Vince’s cell phone rings. It’s Children’s. The baby hasn’t eaten since 1:00 a.m. (it’s 2:30 p.m. now) and he is not responding to stimulus. They want to due a spinal tap to rule out infection. I freak out. This doesn’t make sense. Just last night he was awake and responsive. What happened?  

They want Vince’s permission to do the spinal tap. I ask if they can wait until we get there. Mom and I think that he may respond once he hears my voice and I hold him. Vince asks. They tell him that it is imperative to do the procedure now. We authorize the procedure. I start crying again. 

We make some quick decisions. Mom will stay home and take care of Jake while Vince and I head to Children’s. We have to stop and pick up my prescription on the way, however. Vince and I get in the car. Just then Jake sees us and runs to the car. He is excited I am home. My heart breaks that I don’t have time to spend with him right now. I give him and hug and a kiss and tell him that I need to go see the baby. He tells me he loves me and that I’m looking skinny. Awesome kid. 

We pick up my prescription so that I will have my medication. It takes forever. We then have to stop and get gas. We finally get on our way. We hope traffic isn’t bad. We manage to get to the hospital in 30 minutes. Normally the trip takes about an hour, so you can guess how fast Vince was driving. 

We get to the hospital and go straight to the baby’s room. There is my tiny little guy sound asleep. They had finished the spinal tap. I walk past the two nurses in the room and start talking to my little guy. He opens his eyes and opens his mouth. His legs start kicking. The nurses are shocked. He hasn’t moved that much all day. I ask if I can pick him up. They say yes and suggest I put him to breast. Darn. I don’t have on a shirt that is conducive to breastfeeding. 

I take off my shirt. I don’t care who sees. My baby needs me.  

I pick him up and place him next to my breast. He latches on and takes about three sucks. He then looks straight into my eyes and smiles. He latches back on and never sucks again. He sleeps. He makes the cutest little baby sounds I’ve ever heard. 

The mood has changed in the room. The nurses have gone from a worried hover to a purposeful mission. They start telling us how to order food (I get to eat free since I’m nursing), show me how to use the breast pump (they had one brought in for me) and show us where everything is in the room. They take Vince on a quick tour so he knows where the kitchen is should we need ice, water, juice or Sprite. None of this information sticks in my mind. I’m only looking at my son. 

Vince and I enjoy our alone time together. The only thing missing is Jacob.  

After an hour or so our endocrinologist, Dr. Dickson, arrives. He introduces himself to me. He’s not what I expected. But, then again, nothing about this hospital has been what I expected. After spending three days in a typical hospital environment, this one seems strange . . . almost too relaxed, even. But, it is a hospital for children, so I’m sure everything is okay.  

We talk for a few minutes. He tells us that the karyotype results should be back around 6:00 p.m. and that he will come back and let us know what they find. The hope is that they see an XY on the 46^th chromosome. This would mean that we have a genetic male and that we would only need to focus on reconstructive surgery. We go back to enjoying our new little boy. 

6:00 p.m. arrives and no doctor. I’m not surprised. What doctor works past 5:00 anyway? I pull out my camera and start taking pictures of Vince and the baby. As I’m doing this, the doctor returns. He asks me to sit down. 

He then takes a chair and tells us that the karyotype came back. He apologizes for the delay. He had to do some research on what was found. This scares me. 

He reminds us that the 46^th chromosome determines the sex of the baby – XX for female; XY for male. He tells us that, typically, we are either XX or XY at the chromosome level, but not both. I remember something I read from the night before, and ask the doctor if our child is mosaic. He is. 

Our baby has XX on the 46^th and XXY on the 47^th. He is the 11^th person with this chromosome signature.  

The doctor confirms that we do indeed have a son. He also tells us that the baby has Klinefelter’s Syndrome. Klinefelter’s Syndrome affects about 1 in 500 to 1 in 1000 males and sometimes goes completely undetected. In some cases, the condition is not caught until a boy has difficulty going through puberty or when an adult male seeks fertility assistance and learns he is infertile. The symptoms cover a wide spectrum and can range from what appears to be a normal male with infertility to a non-normal appearing male with severe learning disabilities. 

My husband, who has been a rock up to this point, breaks down. Surprisingly, I’m okay. I’m not sure why I’m not crying since everything else has set me off up to this point. I cling to the message that I received from God . . . “everything will be okay.” 

I ask if this is heredity. Could Jacob be affected? He says it is not. After a bit more discussion he leaves. He tells us he will be back in the morning. 

Vince clings to our baby. I try my best to offer comfort, but I’m not doing a very good job. It’s hard to look at your beautiful child and think that he may face a lifetime of challenges.  

The shift changes and the new nurse comes in. She tells us that our baby will need to be hooked up to monitors for the night and that she will be back later. After what seems like only 10 minutes she is back. We have to put our baby back in the bed. She and another nurse hook our little guy up to several monitors. My son wakes up and looks at me. It breaks my heart. Here he is awake and now we can’t hold him. I start crying. Vince is crying harder. We don’t want to cry, but the emotions of the last few days have caught up with us. We’re both sobbing. The second nurse tells us we need to be strong for our son. I want to slap her, but I know she is just trying to help. Suddenly this place seems hostile. I want to grab my son and run. 

Common sense finally takes hold. Vince and I hold each other and watch our son drift off to sleep. Once we are sure he is asleep we leave. I don’t want to leave. Vince doesn’t want to leave, but there is much we need to discuss. This place is suffocating us. We have to get out. 

The drive home is mostly silent. The only sounds are from our sniffling. 

We get home to find that Jake is still awake. He is so excited I am home that he cannot settle down. We talk to him for a few minutes and send him to bed. We tell him that he needs his rest. Tomorrow is a school day. He finally goes to bed. 

Mom, Vince and I sit down in the living room. She can tell something is wrong. We both look terrible. We start relaying the day’s events to her. 

I tell you, Vince and I are in Hell. We are angry and feel like the world was against us. We cry. We scream. We shout at God. I know I am being punished because I did not want to get pregnant in the first place and had struggled so hard with having another child. Vince believes it is his fault. He is being punished.  

My mom helps us through our spiritual crisis. (I cannot think of a better term to use because that is EXACTLY what it is.) 

I realize we are trying to boil the ocean. We are worried about our child's sex life (or lack thereof), puberty, peer pressure, social stigma - you name it. We finally decide that we need to take it one step at a time and do what is best for our baby. We know he is withering away in the hospital - he has lost a pound, isn't eating and isn't responding to stimulus well.  

Vince and I go to bed, cry some more, hold each other and pray. Vince and I have not prayed in years. We pray for guidance on what our next step should be. We receive our answer. The most important thing for us to do is to get our baby home. 

Vince is worried that they will not let us bring him home. I assure him that they will. I am so confident in this that I tell him we won’t even have to ask. Everything will fall into place for us. 

We start thinking of names again. We look through the Bible to find the appropriate name. We narrow it down to two.