One Day At A Time

Why I didn’t think to start this sooner I’m not sure.

Here we are, day 106 in the NICU, just a couple short weeks from being able to bring our girls home after what feels like the longest 3 months of my life. Then bam, just like that, one day can completely turn your whole world upside down.

The girls were doing so good for being 16 weeks early. They had already defied all the odds that were against them. We had already dealt with infections, open PDAs, brain bleeds, blood transfusions, ventilators, pretty much anything that two 1 pound little girls shouldn’t have to go through. They were growing, smiling, drinking from a bottle, and now two 6 pound baby girls being weened off the oxygen canula so that they could come home. It was just a normal Sunday, we were planning on stopping by to check on the twins then head to a friends house for her twins birthday party. We got to the hospital and things were great. Marybeth was doing a room air challenge to see if they could remove her oxygen support completely, and Anabelle was just being her sweet, tiny self. Smiling, looking around, taking her bottle and then, just like that, things changed. She instantly lost her color, she had a blank stare on her face, she went completely limp as if she were just a rag doll in your arms. What did I do? What is wrong with my baby? Why her? These are just some of the questions you find yourself asking while you’re waiting on blood work to give you the answers… Bacterial Meningitis. The two words you don’t hear very often. Being a mother you don’t think something could ever go wrong with your children, you do all you can to protect them, to make sure they are never hurt, sick or scared, but something like this you can’t control. They rushed her to the more intensive NICU unit. She was placed back on a ventilator and hooked up to an EEG monitor, and started on antibiotics. Seizure after seizure, a heart rate of 230, fever, no response to anything. This is when you begin to ask yourself why? What could you have done to prevent this? Why my child? God, please just fix this. Let me wake up from this nightmare.

3 days go by,  the seizures are finally stopped with medication, her color starts to come back, and here and there she moves her arms. The blood culture finally comes back. Citrobacter koseri, so you begin to google… very rare, High mortality rate, brain abscesses, 75% chance of continued seizures, 80% chance of mental retardation… how can you possibly keep yourself together after reading that. Knowing that precious little girl who was completely fine and getting ready to come home just days ago is now a statistic. She is fighting for her life and no one knows why. All you can do is wait and pray… pray that this child defeats the odds again and makes it through this, sit there and stare at her knowing there is nothing you can do to take away her sickness and her pain because God knows if you could trade her places you would in a heartbeat. You can’t help but to blame yourself. Did I do this? What if I could have held out and had them full term? My body failed them. I did this to her. But you can’t do that, you have to be strong, for her. She needs you more than ever right now. All you can do is give it to God, even though it is so hard to find your faith in this moment. No matter how mad you are at him for letting this happen to your little girl, it is in his hands…