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.