I wish I could explain...

I've strongly debated writing about my experience in the nicu. Part of me thinks, "I should- just for my own benefit." Part of me thinks, "I experience it everyday, no need to relive it when I'm not there." And, still, part of me thinks, "maybe I should- for those who have no idea what it's like." Spending an average of 8-10 hours [daily] in the nicu is not a relatable experience, unless you've done it. So, for all of the aforementioned reasons, even not wanting to do write about it, I will freely write whatever comes to my mind... no exceptions, no apologies; just raw emotion and an uncensored thought process. 

The roller coaster [btw, I detest this description] of emotions from excitement to fear, is draining. The constant noise is nauseating. It's easy for outsiders and visitors to go on with life, thinking of us every now and then. But, the nicu has become my life. I am annoyed by people telling me how to control my emotions, I am annoyed by the constant questions, the expectations, the advice, and the suggestions, "If I was you..." 
I am tired of being tired.

I lie awake at night, because no sleep is better than the nightmares: the nurses can't bring Caroline out of a brady/desat, Greg clotted again and is in critical condition, or his transplant failed and I am left with two girls to raise on my own. I do my best to ignore these thoughts during the day but my subconscience haunts me at night. I hear alarms in my sleep, I wake up drenched in sweat and worried. Yet, I get up every morning and drag myself to the nicu; exhausted or not. I wait for the doctors to round on the girls, never expecting much change: "Caroline's still doing well on room air but Blake can't seem to get off the .1L of oxygen" or "Blake took 7 ccs for me, but that's okay because she's still little, it will click for her one day." 

I am proud of her for those 7 ccs, and I want to have patience and faith that she will get it. But, something inside me wishes Blake would understand 'suck, swallow, breathe' sooner than later. I wish Caroline wasn't so developmentally behind her sister, and that they weren't, both, developmentally behind other kids their gestational age. I pray their lives won't be severely impacted by their prematurity. I try to block out the doctors' warnings about Caroline's future cognitive and physical development. But, at night, I cry and pray she won't have any disabilities. I beg God to give her the ability to walk, to see, to play, and to experience life to the fullest. Anger overwhelms me and I question God, "Why did her brain hemorrhage? What's the purpose in all this?" More than anger though, is sadness. I am sad that Greg cannot visit, I am sad we are fighting the same [emotional] battle separately, I am sad he can't know what I am experiencing (no matter how much I try to explain), I am sad he's sick and without me, I am sad he has dialysis 3x a week for 4 hrs, and I am sad we cannot be together as a family.

The guilt I feel is unfathomable. As Greg's wife, I should be with him. Yet, as the girls' mother, I should be with them. I am constantly torn between spending time with our girls and being with him. When I am in the nicu, I think about him. When I am with him, I think about our girls. I worry that I didn't spend enough time holding them; even if they're held 4 hours a day, there's still 20 hrs that they weren't held. Or, when I need to get away, for a few hours, I worry if the nurses wonder why I am not there to care for the girls. And when I have a 'fun weekend' going home to watch the Superbowl, I feel guilty that the girls are laying in their cribs, alone, in a loud, obnoxious environment. I can't even take a walk through the park without feeling that Greg & the girls should be with me. 

Oh, and I can't forget the jealousy. I am jealous about everything imaginable: parents of healthy babies, parents of babies being discharged, parents of full-term babies, parents who will never experience the nicu, parents whose children are not developmentally delayed, parents who are together in the nicu... yeh, there's a lot of jealousy. 

Many studies suggest that long-term nicu parents suffer from PTSD (post traumatic stress syndrome). I am not suggesting that 1) I can be considered a long-term nicu parent [just yet], or 2) I have been diagnosed with PTSD. However, I am suggesting that spending 130+ days in a hospital setting, 105+ of which are spent in the nicu, changes a person's psyche. Moreover, I believe the girls' stay is almost over (relatively speaking). I want to be calm and excited about their continued growth, while simultaneously, I am reliving a lot of the emotions I did not allow of myself earlier. Therefore, I am having frequent nightmares, night sweats, and anxiety attacks. 

I am always thankful. I would relive the pain, the nightmares, the sadness, and the guilt, one hundred times over to be with our girls. We have suffered, prayed, and sacrificed for these girls. They are true miracles from God. They have a plethora of guardian angels who held & loved their souls before they were conceived [I strongly believe this]. Caroline's neurosurgeon (for her VP shunt) wrote his initials "RG" on her skull before surgery. It was as if her late great grandma, Ruth G,* was reassuring us she would be with Caroline during surgery. Furthermore, we have 100+ people (family, friends, co-workers) praying for our family and sending love through facebook, twitter, and instagram. People cook dinner for us, feed our animals, clean our home, buy us gas cards, send care packages, etc... for this I am so grateful. I am thankful for Angela. She continues to support the girls by providing breast milk, knitting outfits and blankets, and makes me laugh with funny texts. She has become a wonderful friend and I cannot wait for the girls to meet her. 

I am not really sure how to end this. I am not sure if it even makes sense; and I don't care. I did not write it to for anyone's 'viewing pleasure.' These are my thoughts, my feelings, my internal struggles, and I had to express them in the only way I knew how: by writing them down. 

*I have excluded Ruth's last name for privacy reasons.