Wednesday 

We had our first follow-up appointment with the urologist today. Basically, we covered some of the same information as last week, but in a bit more detail. Michael is facing three surgeries, with the first being around six months of age. The first surgery will be to straighten out his penis and lay down the framework for the new tube. The second surgery will be move actually move the tube. The final surgery will be to bring down the testical(s). (Right now we know for sure he has one.) If possible, the doctor will combine some of the surgeries, but the primary goal is to ensure everything works properly. We have an appointment in January to take a look at everything again and then actually schedule the surgery. 

On a funny note, I have to tell you about the trip to the hospital. It was raining here and traffic was brutal. It ultimately took us 2.5 hours to get to the appointment. We were VERY late. Of course, it came time to pump. Fortunately I had my manual pump with me. I was hoping I would be doing this at the doctor’s office, but oh well. 

I grabbed an extra receiving blanket, covered myself up and got to work. I wonder if I’m the first woman to pump in the back of an SUV while driving down Central Expressway in Dallas? 

Anyway, I pumped for about 10 minutes. Goodness. My arm was tired. I joked with Mom about this getting rid of that flab under your arms. Hey . .. it could work. I stopped to check on my progress. Three drops. Three sad, little, pitiful drops. Um, this isn’t working. 

Of course I didn’t have my instructions with me, so maybe I sat the contraption up incorrectly. I doubt it though, because it still felt like I was doing it correctly (i.e. pain). I gave up and decided I would just have a bigger pumping session when I got home. Fortunately I had a couple of bottles with me. I have to say that I’ve yet to experience the beautiful side of breastfeeding. Can someone let me know when that will occur?

Tuesday 

Today is Michael’s original due date. I’m glad we’re way past that now. J 

I researched bottle nipples today. Extremely fascinating work, I tell you. As a business analyst, I’m used to doing gap analysis and I found myself doing the same thing. Sort of creepy, eh? 

I found one that was worth a try and Vince picked it up on the way home from work. (It’s called the Breast Flow and is designed to simulate let down.) As soon as Vince got home we tried it with the next feeding. Michael took three sucks on it and got that look on his face like, “are you serious?” This is the same look I get when trying to breastfeed. He took a few more tugs and got milk. Fortunately, he accepted the bottle very well. 

Later that night we tried the breast again. This time he was a little more persistent. He tried for a full minute before getting annoyed. We’ll keep working on it. I know we’ll get there. 

Monday 

Had a little bit of a scare today. There was blood around Michael’s navel. We took him to the hospital. Since he had been transferred so quickly after his birth, the plastic clamp was not removed. The night before Michael and I spent some time in kangaroo care in order to get him to the breast. I think the skin-on-skin contact may have pulled a bit on the navel. 

We got to the Women’s Center and I saw many of the nurses that took care of me while I was there. They recognized me and rushed to see Michael. Michael is a beautiful baby and ultimately drew a bit of a crowd. Perfect strangers walked up to us and commented on how cute he is and his gorgeous hair. I was beaming. 

A nurse took us to a private room and removed the clamp. She examined his navel and said everything was okay. We just need to cleanse it with soap and water for the next few days. It may take a little longer for it to fall off, but that’s okay. I’m just glad it’s nothing serious. 

We also stopped by the lactation consultant’s office while there. I told her about the challenges we were having. She asked what I’ve tried so far and said I’m doing everything correctly. She also gave me a few new things to try. She told me that it will be difficult to get him on the breast since we were separated so soon and because he got use to being somewhat lazy. She assured me it is possible. She also recommended I find a bottle with a flatter nipple. 

Saturday 

As I review what I have logged over the last few days, I realize I’ve only hit the highlights. There is so much wonderful and scary stuff that I haven’t even touched on, but I believe the most important items have been documented.  

Vince and I know we face challenges in the future and we know that God will guide us every step of the way. We also know that our little boy has an extremely rare condition that is highly misunderstood and is currently associated with a lot of social stigma. Our direction is clear - we are to love our little boy and raise him to love God. We are to open our hearts and minds and learn about this syndrome. We are to teach so that this condition may be better understood. We are to share what we know so that doctor's can better screen for this syndrome and find a cure - if a cure is needed. 

I know we have a lot to learn in the coming weeks, but for now God has directed us to rest. So rest is what we will do. 

Friday 

It’s been a boring day today – a perfect day. We’ve pretty much sat around and simply catered to Michael’s every whim. We’ve not put him down all day – someone is always holding him. He’ll be spoiled for sure, but I don’t care. He’s home. 

We did go to the pediatrician’s office for his first visit today. He had to have blood drawn to check bilirubin levels. I hated that he had to be poked again. He took it like a champ – didn’t even wake up. I guess it was no big deal after what he’s been through.  

I talked to the doctor for a few minutes. Our endocrinologist called her last week and gave her the history on Michael. That made me feel great. All of his doctors are working together. She also told me that she has other XXY patients. God is truly looking out for us. 

Oh – by the way, the results came back negative. 

Thursday 

We wake up early and excited. We get to bring our son home today. Mom calls as we are getting ready. Michael has eaten like a little champ and has produced a ton of diapers. She has had a blast spending the night with Michael. 

I rush around and get ready as quickly as possible, only stopping to pump a few times. We get Jake up to get ready for school. While he’s eating his cereal Vince tells him that Michael is coming home today. Jake is so happy. 

After Jake leaves Vince and I load up the car. We decide to make a quick trip to Target. After all, this boy has only one outfit. If he spits up all over it, he will have nothing else to wear. At the store we make a mad dash to the baby section. Okay, so it isn’t a mad dash. I’m actually using one of those riding carts because I’m feeling a little sore and very tired. The events of the week have caught up with me. I feel like a dork driving the cart around, but I want to save my energy for Michael. While in the store we are grabbing outfits, booties, hats, etc. and tossing them in the basket. I don’t think I’ve ever shopped that quickly. 

We check out and start heading to the hospital. Mom calls again. Michael is awake and they are “talking.” How wonderful! 

We get to the hospital and rush to his room. Mom has been up pretty much all night with him holding him in her lap. I am happy. I hated seeing him lying in the crib with all those wires and monitors. Mom catches us up on the events of the night. I review his input and output logs. What a miraculous change from just 48 hours ago! On Tuesday he consumed only 145 ml of food and produced only 5 diapers in a 24 hour period. On Wednesday he consumed 339 ml and produced 8 diapers. Today’s results are even better – 400 ml and 8 diapers. Even the nurses were commenting on how much he has improved. 

We order some lunch and Mom heads home. She will need to pick up Jake and then come back to the hospital to bring the three of us home. We’re not sure what time we will get to leave, but we expect it to be after 4:00 p.m. That is when the cultures from the spinal tap should be complete. It’s just a waiting game now, so Vince and I settle in and just enjoy the peace of the day. It’s a much calmer environment that it was just yesterday and the day before. Our hearts are at peace. I even manage to take a nap. 

4:00 finally comes. The nurse (her name is Dianne) tells us it’s time to take our boy home. She leaves the room to start processing the paperwork. Vince calls mom and tells her we’ve been released, then starts to put Michael in his street clothes. I scurry around the room packing everything. Just as Vince starts the changing process, Michael has a very big poop – you know, one of those explosive ones that gets everything messy? I guess he left his calling card . . . 

We give him a sponge bath and put his clothes on. It’s so nice to see him in real clothes. Dianne returns to remove his IV. While this is occurring she asks why this little boy is even here. He is clearly a little boy! We share with her the miracle that had transpired. She has tears in her eyes. 

We’re ready to go. We sit down to wait. We have huge, goofy grins on our face. All of the sudden it occurs to us that we don’t want to wait here. We’ve been in this tiny room for too long. Our son has been here even longer. The hospital has a huge model train display downstairs. We decide to hang out there.  

We leave the room and head down that way. I am so happy it feels as if my heart is going to burst. We get downstairs just as my mom pulls up. We jump in the car and head home. It’s a hour and a half drive due to wicked traffic, but we don’t care. My family is all together with no one in the hospital for the first time. Jake is sitting next to Michael just watching him. He is so proud. Vince and I keep looking at each other and smiling. I’ve never been so happy to sit in traffic. 

We get home and settle in. It’s absolute bliss to be home. 

Wednesday 

We get up early and pack a diaper bag. Mom and I dig through all the girly clothes and find one gender-neutral outfit. That is what we will bring our son home in. Vince installs the PINK car seat in my car. We ARE bringing him home. I am determined. Vince is determined. Mom is determined.  

As we prepare for our morning we name our child. Vincent Michael Sharpin was chosen. His name means Invincible Warrior. We call him Michael because he is our little warrior. We get Jake off to school and head to the hospital. 

Just our spending time with him completely turns him around. He begins eating and responding. He even smiles at me and my heart melts. We anxiously await the doctor's visit because we KNOW he will tell us to take him home. Mom leaves around lunchtime to get home in time for Jake to return from school. 

When the doctor arrives, he tells us we can go home, but it has to be the next day. The results of the spinal tap will not be in until Thursday at 4:00 p.m. We are disappointed, but we were okay. Our son is doing better. His life is turning around. 

This day also turns mine and Vince's life around. Now, I'm not a preachy person at all and I do not wear my faith on my sleeve (in fact, I haven't worn it at all in a very long time), but I have to share what happens next. 

A nurse comes into our room out of the blue and says she just had to meet us. She said our primary nurse and our doctor's told her that they had fallen in love with our family and our courage. (I'm thinking - what courage?) We chat for a few minutes about nothing and everything. We talk a lot about triathlons. After a while she asks if she can pray for us. We say yes.  

During the prayer something shifts. It changes from a "bless this family" type of prayer to a prophecy. Now, I've grown up in a very spiritual family and have grandparents that have delivered prophecy to thousands of people. My grandmother gave a prophecy to President Regan. I have personally witnessed it done hundreds of times but never believed it was real. 

God speaks to Vince and tells him that he IS good enough, which is something he has struggled with all his life. God then speaks to me and says that my sons will be like mighty oaks at the river and that they will bear fruit. My sons will have children! 

I'm crying now as I type this. 

There are many other things revealed to us in this brief time frame and I know that more will be revealed in the future. After the prayer ends our hearts are at peace and felt so light. It's like someone gave us a glimpse into the future and we can see our big family with lots of grandchildren. Everyone will be healthy and happy. 

Shortly after the prayer the urologist comes in with the endocrinologist to examine Michael’s genitalia so that the next steps can be defined. Vince and I stand at the end of the crib and watch the exam. We witness a miracle. 

On Saturday night when they showed us our baby's genitalia, we saw a mess. We saw an enlarged clitoris and a vagina with no opening. Our baby could pee, but would need corrective surgery to make everything work properly. I did not know how they were going to turn that into a functioning vagina, much less a functioning penis. 

What we see now is a boy with a penis to be proud of. Yes, it's a little crooked, and the urethra is not in the tip, but that is a VERY common problem that is easily corrected. In addition, his one testical that we know he has for sure is not descended, nor is the other gonad (which we think is an underdeveloped testical). Again, common problems. Bottom line, we went from having to build a skyscraper from scratch to putting a new coat of paint on an existing one. We are dumbfounded. We are overjoyed. We pray and thank God for the miracle he has given us. 

My mom returns with Jacob. She offers to spend the night with Michael to keep up the progress and to ensure he stays on track with eating. We think it is a great idea. After spending some more time with him we leave. Vince and I rest that night – better than we have in a long time. At the hospital our son thrives, putting away more food in an 8-hour period that he has his entire life.

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.