Past, Present and Future

On the 17th of February this year - exactly 6 months ago tomorrow - my life changed drastically. A couple of weeks before that, I'd had bad results in the OSCAR test and the doctor said we had a 1 in 7 chance that our baby had downs syndrome. After much thought and prayer, Bernard and I decided to go ahead with the amniocentesis so that we would know for sure. We knew that our OSCAR results were bad, but surely with odds of 1 in 7, that meant that we had a 6 in 7 chance that our baby was perfectly normal right? 

And so six months ago tomorrow, we went for our appointment for the amniocentesis. However it wasn't to be. After a quick look at our daughter on the ultrasound (we found out that she was a girl), our doctor said that our baby did not have Downs Syndrome and instead had something wrong with her skeleton. It was outside of his realm of expertise so he would call around a few specialists and get me an appointment ASAP. 

I went back into the waiting room knowing that something was wrong, very wrong. I couldn't contain my tears. After a couple of weeks of reading about Downs Syndrome, I had prepared myself to accept it, if that was the case. But this all of a sudden seemed so much worse. 

The doctor got us an appointment with a specialist within a couple of hours, and off we went. That was when we first heard the term "Skeletal Dysplasia". We were told that the chances of our baby being "normal" were extremely unlikely. We were also told that we had a high chance that the baby would not survive the pregnancy, let alone be able to live once she was born. I went home and researched Skeletal Dysplasia and what it really meant, and I found there was a 30% chance of stillbirth and 25% chance that the baby would not make it longer than a couple of days. Our "odds" were probably even worse than that since we found out relatively early in the pregnancy. Usually if Skeletal Dysplasia is detected at 17 weeks gestation, it is bad news. 

I spent the next month or two trying to prepare myself for the worst - but I never truly believed that our child would not survive. The thought that it was even a possibility tore me apart. But somehow I "knew" that she would make it. I also "knew" that she would not be like other babies, and I knew that there was a purpose in that, even though it would be a hard road for our family to walk... 

As I look back to that time, it feels like it was a lifetime ago. There was a time when I was blissfully ignorant of all these issues. There was a time when I never thought it would happen to our family, that we'd be that statistic - the one in 500,000. 

But as my daughter sleeps in NICU, I wouldn't have it any other way. It has been a difficult six months, probably the hardest of my entire life, I think. It is still hard now, not being able to change anything and just having to trust God and trust the doctors. I know that this journey has made us stronger, it has made me stronger. It has opened my eyes to issues that I had never thought about previously. I feel like being Maddy's mother has already made me a better person, and it will continue to do so as she grows up. 

Today, I had the privilege of holding 12 day old Maddy for the first time. (I didn't have my camera, once again!! So you'll have to wait for photos ;) ) The first thing she did when she was placed in my arms was to let out a massive poop. It was so nice to hold her after nearly two weeks of waiting. I noticed she felt "different" to Lana as a baby. Her centre of gravity is so much higher. I'm sure that we'll get used to her differences soon though. I already don't notice her short arms and legs, and the different shape of her hands. 

Maddy is doing awesome - she's now off ALL the machines, she doesn't even have the oxygen tube any more now. She's only connected to the monitors. She is still being fed by the NG tube, but they are going to start trying to feed her orally today. I hope that goes well - however she may have lost a bit of her sucking reflex since she has never been fed orally before, and also her cleft palate may make it more difficult as well.

The head of the NICU was back today and he is trying to coordinate with the other doctors a way to do Maddy's endoscopy and MRI. However, he was amazed at how much Maddy has improved in the past week. Her Stridor (noisy breathing) is already much less than it was a week ago and it is getting better every day. He also doesn't think that her cervical spine is as unstable as previously thought. Hence we are now able to hold Maddy. He doesn't think that either the endoscopy or the MRI are very urgent and his focus seems to be more on getting Maddy ready to come home. It was really a light at the end of the tunnel. I didn't get much time to talk with him as he was very busy on his first day back, but I want to ask him how soon he thinks Maddy will be ready to come home.

I'm so glad to know that Maddy is getting better and stronger and will be coming home soon. I don't know how soon, but I'm happy to wait for her. After all, six months ago we didn't even know if we would be able to bring her home at all. But now, the future looks so bright. I'm ready to begin life at home with our daughter and to see where this journey continues to take us :)