In the last eight and a half years I have compiled a short list of things that they never tell the parents of preemies. And depending on how premature your baby was…you may know even less than the moms and dads before you.
Cody was born at 23 weeks and 5 days…I know this because he was an IVF baby and I know the exact day that they implanted the embryos into my uterus. Now if you look into his medical records you will see them say he was 24 weeks and 1 day. If you want a straight up answer of why that was..it is short and simple. Viability of a fetus in legal standards is 24 weeks…there are places that will preform abortions up to 24 weeks…my son was born at 23 weeks and 5 days.
The first thing they never ever warn you about – you will never be prepared for a premtaure baby…ever! It doesn’t matter how you read it in the baby books that it could happen…you will never imagine that it will happen to you.
So now you have this premature baby and you wonder what in the heck could possibly be next. First off, always keep a journal. Keep track of weight gains and losses, oxygen sats, medications, what the doctors say, what the nurses say (more important sometimes) and all of the illnesses that you encounter. One day you will want all of this information and it will be very important for you to have it. And if nothing else, it gives you something to do while you are there for hours and they won’t let you hold your infant yet. Because Cody was so so premature, I was not able to hold him until he was 39 days old. His skin was so fragile and he was so sensitive that any movement and touching upset him and caused his oxygen sats to go down.
Next, research everything. If there is one thing that Richard and I have learned through this whole process, it is that YOU are your child’s advocate. Do not expect that the doctor is going to be the one to always advocate. There are days a new doctor would come in, make decisions and I know, without a doubt, there is absolutely no way that he read through every single file on my son! If we wouldn’t have researched and pushed for medical procedures, I can tell you that Cody’s vision would be way worse than it is today. I am sure that over the first 6 years of Cody’s life, I had numerous doctors hate me and my researching. Being a parent to a baby with special needs, you have to have a tough skin…expect to be looked down upon, expect doctors to be rude, and when you find one that listens to your concerns and helps you as well as your child, hang onto them.
In every page you read about preemie babies, you will read about the “rollercoaster ride” and it is true. I remember going in to a glorious day of lowered oxygen levels and kangaroo care and then finding out the next day was back to square one. Expect it, give it its fair share of “why me” time and move forward. Easier to say than to do, but you have to keep moving forward.
Demand kangaroo care when your baby is stable enough to be taken out of the incubator for short periods of time. The benefits for you and the baby are endless. Every single time they laid his tiny body on my bare chest, his heart rate would steady, his oxygen would go up and he would melt my heart. I felt better and stronger and I actually FELT like a mother. You feel so helpless in there that anytime that you can take to feel like the parent, the better. Savor every single second.
Take tons of pictures…take more than you ever think you could possibly need.
And lastly and probably most important….don’t be mad at people and hold something they say against them. They have no idea what you are going through (for the most part) and they do not mean to be insensitive. I think that people just don’t know what to say. I have pity moments for myself that I never had a “normal” birth and I never knew what it was like to bring home a full term healthy infant. I have pity moments for Cody that he had to go through so much trauma to stay here with us. But all I can do is hope that everything we have been through has made us stronger and that somehow…our story makes other people stop and hug their own kids a little more.