Tuesday, February 5, 2013

Surviving the NICU

Well, I think I'm back. I am naming this post "Surviving the NICU" because that's exactly what we did....we SURVIVED. I can't call it much else. We didn't enjoy it, we didn't feel we belonged there, we didn't want to be there, we felt several times were weren't going to make it through, but we did! We finally have our baby girl home after 108 days in the NICU. I explained her birth story in an earlier post if you didn't get the background. I can't explain everything that we went through while we were there, but I was also keeping a journal on caringbridge.com for that. It was nice to  have a way to update friends and family when the last thing you wanted to do was explain what was happening each day over and over. We have been overwhelmed by the support of our friends, family, school community, and perfect strangers. At times we didn't know what to say. It's really hard to accept so much help. You have to learn to say "yes" and "thank you". We heard time and time again how strong we were. "You are the strongest mother", "you guys are so strong, you will get through this". I read recently that sometimes the strongest people are actually the most sensitive. I believe this statement 100%. I never felt strong. Ask my husband, I am one of the most sensitive people around, especially when it comes to parenting! I just can't show it. You don't want to look like the poor sad mother, or the depressed mom who has the sick baby in the NICU. You can't cry all the time, so you have no choice but to appear strong! Trust me, you have your days. Days where you just want to complain to everyone you see about how tired you are of going back and forth to the hospital each day, or how you just want to hold your baby at night, or how you have run out of money because you are trying to take time to be with your baby each day and work shouldn't be so important. You have your days!! I have learned a lot about myself and a lot about others. I know everyone means well to always ask, "how is the baby doing?", but they never expect a loaded answer or you to REALLY tell them how your baby is doing! I did this once on a bad day and I could tell by the look on the person's face....I shouldn't have said all that! Like she was thinking, "Whoa...I shouldn't have asked!" That was one of my days. But from then on I learned that when someone asks, whether its a good day or a bad day you just say, "Oh she's good, thanks for asking". That always suits people better. They feel comfortable then. They really mean well and people want to be polite. Just be polite back.

I say we survived, because I have no idea how we really made it through this never missing a day at the hospital, raising two young children at home and both of us still working. I can't remember how we made each day work, but that's how it had to be, each day, one at a time. I couldn't even look ahead at the beginning. It was overwhelming and depressing to know she was born in October and we were told she should come home sometime around her due date, which was in January. "There is no way" I thought that we would make it to January. I wanted to die just thinking about it. Somehow we survived. We even made it through a surgery that she didn't have the best reaction to at first. It was heartbreaking!  I think I have caught just a small glimpse of what it is like for parents who's child has cancer, a lifetime disability, or another disease. I never understood how those parents survive, but they do. Our ordeal only lasted 3 months in the hospital, so I can't imagine what they must go through, but I have a tad bit more understanding. You don't think you are going to make it, you just HAVE TO, so you DO. You have a choice to make. You can either sulk about it and be constantly depressed and upset (which sometimes you want to do), or you can make the most out of what you've been given and look for the positive. Our baby was ALIVE...positive! She had no major disabilities...positive! She was fighting to survive...positive! We had a great support system..positive! We had everyone we knew and people we didn't know praying for us...positive! There was so much good in the midst of all the bad that we just had to CHOOSE to focus on the good. At times we needed to remind each other of this when one would have a bad day, but these positives really got us through.

We learned to accept the help people were willing to give. We would have never been able to survive without help with the kids, help with meals, help with monry, help through prayer. It is really hard to say yes, but people really do want to just feel like they contibuted, so I learned to let them. When I think about being in there shoes I know I would want to help, so you just accept it and be grateful! I think we have learned the true meaning of gratitude. I don't think we've ever been so grateful in our lives. We will never again take a day for granted. We are grateful for each child, each day, each gift we have been given. Although I would not wish a preemature baby on anyone, just know there is good that comes from it. You WILL survive, you will LEARN, and you will become STRONGER! And.... someday it will all be a memory. Thank you to all who helped us and supported us through this and continue to. We are forever grateful!

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