5 years ago...

I remember how badly I wanted a baby before I was pregnant with Coulby. It was an indescribable emotion. Not like, "I think I am ready for a baby," or "It would be nice to start a family." It was more like, "I want a baby NOW!" My husband was a little less driven because we had not been married long before the plans for a family were set in motion. Despite his initial uncertainty about timing and diving into such a huge decision, my hubby and I were blessed to become pregnant right away and very excited to add a third member to our family of two.

I went through my pregnancy just like most other women do: with the usual excitement, uncertainty, anticipation...oh, let me just put it in "real" terms! I was excited and scared to death, in awe of what my body was capable of and horrified at how large certain body parts had become, loving preparing the nursery and wondering how we would afford everything for our baby (have you seen the price of diapers these days????), loving watching how my belly was growing with the life growing inside of me and looking forward to wearing clothes without elastic waist bands. I had a great first pregnancy...if I dare say, it was perfect.

On Saturday, April 25, 2009, all of these memories came flooding back to me. Of how badly I wanted a baby, of all of the emotions surrounding my pregnancy, and of how perfect my pregnancy really was. And of how horrific the aftermath became. How devastating it was to have such a great pregnancy only to find out there was something wrong with my baby boy all along. All of those emotions came back, too, as we celebrated Coulby's 5th birthday. If you had told me on April 25, 2004 that my life with my newborn son would consist of a medical vocabulary with Citrullinemia at its root, medications completely foreign to me, scales, a food values book, a daily log of my son's protein and caloric intake, and an unwanted familiarity with Hopkins and its staff, I probably would have looked pretty dazed and confused. And that is exactly how I felt when I was told these things only 4 days after we brought Coulby home from the hospital.

I really did not know what to expect in the years to come, or even if I could expect to have years to come with my son. The doctors at Hopkins gave us little bits of information at a time, and it always seemed that it could not get any worse until they gave us a new piece of information about Coulby's life with Citrullinemia. I think I walked through a daze for most of those days that Coulby spent at Hopkins as a newborn. He laid in a hospital bed hooked up to an IV and wires, wires and more wires when I was supposed to be holding him in the comforts of my home welcoming him into our family. I missed out on all of the newborn stuff with Coulby. That still saddens me, but I look at that time as a blessing, too. Because I can now look back and see how far we have come. How far Coulby has come. How he has grown and thrived and far surpassed what we expected from him as he laid in that hospital bed 5 years ago.

Celebrating Coulby's 5th birthday (and his daddy's 30th!...yes, on the SAME day) is a huge deal because I know where we could be based on what we were initially told about Citrullinemia. Coulby is a miracle. A true blessing. And he has taught me so much in the last 5 years. I see his strength and I hope that I can be that strong. I see his perseverance and I pray that I can overcome obstacles with such grace. I see his drive and I realize we have come full circle. It comes right back to my drive to have a baby; to have Coulby. He is driven in everything that he does in his young life. Honestly, while most people are trying to tame that kind of drive in children these days (like in the school system, as I have found), I encourage it and find ways for Coulby to channel it in positive ways. That does not always make my life easy as a mom, but I figure it will be worth all of the frustrations and hair-pulling moments. It already has been!

So I guess my blog today is to remind myself of how blessed I have been in the last 5 years to have Coulby in my life. I am reminded every day when I see Coulby learning something new, or when he tells me one of his fun make-believe stories (which are becoming more and more elaborate and detailed each day), when I watch him climb the steps of the school bus to go to school. Or when he sneaks into my room in the morning after daddy has gone to work and says, "Hi mommy, can I lay with you?",as he snuggles in beside me. My baby. Even though he is a big 5-year-old now, he will ALWAYS be my baby!

*Oh, and what better way to celebrate Coulby's 5th birthday than with a train cake? And I am not one to brag at all, but I made his cake! I do not take full credit, because I did get some ideas off of the resource of all resources: the Internet. I stayed up until 4:30 a.m. making that cake, and it was worth every second. Coulby loved it!*

Sweet Caroline

My first pregnancy was one I would not mind repeating...it was the aftermath that I would never want to experience again. My second pregnancy was a little rockier, but immediately following was a dream! I think settling in to a family of four was made far easier by our experiences after having Coulby. Caroline has been a true blessing, and just as much a miracle as her big brother.

We had a 1 in 4 chance of having another baby born with Citrullinemia. We knew that, and yet we still wanted another baby. I guess people would ask why we even took the chance, and my simple answer is that God had a plan for us. I knew the luxury of not having to worry about much during my pregnancy with Coulby, and I missed that when I was pregnant with Caroline. That feeling of carefree happiness in which I believed nothing bad could touch me.

Nurses at Hopkins, the same nurses who had cared for Coulby during hospitalizations, took blood samples from me and my husband, and these were shipped off to a genetics lab. The lab sequenced our DNA, as well as Coulby's, so the baby's DNA could be compared to ours. This would determine if our baby would be born with the same urea cycle disorder as Coulby.

I had an appointment at Hopkins, my first time going for myself instead of Coulby, in order to obtain a DNA sample from the baby. I had to undergo a procedure called Chorionic Villus Sampling (CVS), in which a sample of DNA is drawn from the placenta. It does involve risk, primarily of miscarriage, which was scary, aside from the whole experience already being terrifying! But I made it through the procedure, at 11 weeks of pregnancy, and both the baby and I were okay.

The next week was excruciating. Waiting for the results of the testing, jumping out of my skin at every phone call. My heart would pound every time I said "hello." Since we had also opted to have the baby's DNA tested for chromosomal abnormalities, we were not only waiting for CVS test results, but those as well.

The first phone call revealed that the baby had no chromosomal abnormalities, and that we would be having a baby girl. The former was excellent news, and the latter terrified my husband! I looked forward to having a boy and a girl! The phone rang again later that same day. It was a Friday, at the end of the "normal" work day. The voice on the other end of the phone told me that she did not want me to have to wait through the weekend to hear the wonderful news that our baby girl would NOT be born with Citrullinemia!!!! I could have screamed it to the world!

Caroline Alyssa was born in 4 hours (I almost did not make it to the hospital!), and weighed 7 lbs. 1.75 oz. She was the most beautiful little girl I had ever laid eyes on! Our little miracle. Our second miracle. Bringing Caroline home from the hospital proved to be a completely new experience for us; the one I grieved after Coulby was diagnosed.

Coulby adjusted to being a big brother, and we tackled the challenges of having to meet Coulby's needs as well as another baby's. It went surprisingly smoothly. We made it through Caroline's whole first year and then some before Coulby was hospitalized for the first time since she was born. She was a little confused by the whole experience, having one parent at home while the other stayed at the hospital with Coulby. It was different for us, too, because we were used to both being right by Coulby's side during hospitalizations. Caroline obviously missed her big brother, too.

And so it has gone. When Coulby has a routine appointment at Hopkins, we try to arrange for Caroline to stay with her grandfather so we can be with Coulby. If he ends up in crisis, one of us rushes him to the hospital while the other one stays at home with Caroline awaiting updates. Then we switch as we can. It is not always easy on Caroline. She often seems to take a back seat when we have to focus much of our attention on making sure Coulby meets his daily dietary expectations and gets the medications he needs. We work hard to find the balance. Both of our children deserve all that we can give them, and with one of them living with Citrullinemia, this has required a lot of work. Work that we are willing to put forth; that we continue to improve upon as time goes by.

I have posted pictures of Caroline, our little cutie! She is a happy little girl, full of personality, and is just as much of a part of our Citrullinemia story as Coulby.