Today is the first Parents of Preemie Day! Go and read the blog post HERE about dealing with the silent disabilities that come with some preemie babies. It is written by Nick Hall, 1/2 of the couple behind Graham's Foundation , and are behind starting the Parents of Preemies Day. There is so much about his post that I love. He talks about the disabilities that you can't 'see' with a preemie.There are also so many 'side effects' on the parents of preemies that some people just don't understand.
There is obviously no way to understand it if you haven't been there. But there are people who chose just to not try to understand all and it is hurtful to any momma or daddy. There is ( or was with me) so much guilt with the premature birth. In our case, it was directly because of my body, and I felt so bad for anything that my poor sweet 2 pound baby was having to endure and would later in life encounter. It didn't matter how many people--even those who had experienced it -- told me it wasn't my fault, it is hard to get over and realize. I know I had a lot of shock with our situation because of the seizure and the multiple doctors that had to see me over and over. Every time one of those doctors came in, or every 30 minutes when a nurse had to draw my blood to make sure my liver and kidney were going to turn the right direction ( Monday, Tuesday, AND Wednesday), it was all like a flashback of feeling dizzy and lightheaded and panic would set it. Every time I would see my sweet little baby for the first few weeks, I'd get hot and dizzy and have to sit down. I know some of that was due to my blood pressure being so high still, I was on BP medsj for about a month afterwards. Every time I saw her and would start to panic things would flash into my mind, bad things. Things as little as learning disabilities to as big as getting the phone call that something had gone wrong and she had not made it through the night. We were very fortunate that we were mainly a feed and grow baby! We had the 'normal' apnea, 2 holes in her heart, and she took a good long time to get up to 3 pounds once she got to her lowest at 2 pounds 3 ounces. I simply can't imagine those I know who dealt with more. And if you've read this before, you know how awful that made me feel to feel sorry for myself and our situation. All of this together made me crazy. I couldn't go in public places without Luke. And even when Luke was with me, my breathing was short, the room would still spin, my heart would beat crazy, and I couldn't handle it. I couldn't talk about Lucy. I kept throwing up. Finally enough people said JUST GO TO YOUR DOCTOR! I CAN'T IMAGINE HOW YOU ARE DEALING WITH THIS! So, I finally did go on anxiety medication. Life has been good in that way for a while now, and I took myself off my medicine a few months ago ( against some others' opinions). The only bad experience I had had was 2 weeks ago when I had the stomach virus. I was sick, dizzy, hurting, and all I could think of was laying in the hospital bed hearing what the doctors were saying to me. My head was pounding. My back was aching. The last time I was sick and dizzy and in pain, I almost died. I most definitely had some panic and anxiety and thought that somehow they missed something and my liver or kidney was failing and I was going to die.Go ahead and laugh, I know it's silly now, but it's reality. And it's all part of my 'side effects' from having a premature baby.
There were also people who called us selfish. Yes, for real. They thought we were selfish because we weren't coming out in public. We told everyone what our discharge doctor recommended. Actually--she said stay out of public for a year. She said Lucy didn't need to go shopping or to church, she was too little to even know what was going on anyways. She also said if Lucy gets RSV in the next few months, she will be straight on a ventilator. WHAT?! Lucy never had the need of a ventilator since birth, why would we risk a virus that could kill her at its worst? We settled with having people away until April--just 2 months. If I could tell any person ( who hasn't had a preemie) one thing, it would be that just because the preemie is out of the hospital, does not mean the baby is the same as a term baby. This poor innocent baby who spent only 29(or whatever applies to the preemie) weeks in that womb -- it takes 37 weeks to be ready to come out, by the way-- did NOT develop the same on the outside! As wonderful as technology and doctors and nurses are, God made the mommy's womb exactly what a baby needs to develop. So, please don't compare what your doctor said about your term baby to what the NICU doctor has said to the preemie baby.
So there is much more that goes along with a NICU experience than just tubes and wires. I posted a few weeks ago that Lucy is still delayed with her speech, but her motor skills are all up (and beyond!!!) her age. She is still having some tremors when she wakes up, so we have a neurologist appointment scheduled. Our issues are simple compared to others, but to us (or me) they are big. Any hurt for your child hurts, every mommy and daddy knows that. She is now 17 pounds and 8 ounces and 28 inches long! Her big
head brain is still growing and is in the 50%. We don't get she's so little! as often anymore, but every little does she say ______ or can she blow kisses stings just a little. I need to work on enjoying all her little stages right now, and not focusing on what she can't do. She is basically running around! All of her therapist have said when they start walking, they start talking and that she won't be able to say the words until she understands them. Any day now she will blow us away again and point to me and say MAMA! I will be beyond excited the day that she knows I am MAMA. I have a funny story about my flight to Vegas and Baby Shannon I will have to write about later.
Right now, I've got 1 with a fever, 1 with a cough, and 2 ( Luke and me) who need to get ready to go see The Hunger Games!
If you know the parent of a preemie, tell them today that you are recognizing the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down.
Happy Parents of Preemies Day!