The positive response I am receiving from my late night ramblings is overwhelming. Everything I wrote is true, and I am not apologizing or recanting anything. However, I realize that I left many [important] things unsaid.
First, and most incredibly, I am the mom I've always dreamed of being. It is truly the most unbelievable feeling in the world. Last night's post had a lot of depressed undertones. Be assured, I am not depressed. I have been depressed before, but I am not now. Despite everything that has transpired, I am the happiest I've ever been; my heart is filled with joy. I know there will be a day when we're discharged. I trust Greg's transplant will be successful, and I know we will be together as a family someday soon. The Bible is right (yet again), Love, never fails. It is the only emotion that has carried me through.
I also failed to mention how empowered I feel because of this experience. I have developed a sense of pride that was previously unknown to me. Before the girls were born, I was miserable. I did everything to keep everyone else happy. But now, I simply do not have the time (or energy) to sit and worry about offending someone else. That's not to say my heart has hardened. Instead, I have found an inner strength; a voice that urges me to stand up for what is right. Much to the chagrin of the neurosurgeon, I insisted Caroline's surgery be moved, from Thursday, to Friday (unless it was a true medical emergency). I was not willing to be apart: with Greg in dialysis and Caroline in surgery. Voicing my opinion was something I would not have done before; I would have quietly accepted that he was going to miss her surgery and then never forgiven myself for not speaking up.
In my wallowing, I never intend to take away, or lessen, anyone else's suffering. No one's pain is less than mine; it's simply different. Many others feel the same emotions, but in a various other ways. There are countless people, with illnesses, who are seemingly overshadowed and forgotten because they suffer silently, or alone. However, my decision to journal does not make my pain any more "real" than those who do not.
Lastly, I did not mention how thankful I am for Greg. I will spare the sappy, "I'm so in love with him" nonsense ('cuz we all know it's true)... But, he carries the same burdens with him. I often forget that he goes to work everyday (yuck!). After work, he comes home to an empty house, then drives himself to dialysis where he sits for 4-5 hrs, surrounded by elderly, sick people. It is a joyless place. He does it without complaint and self-pity. He focuses on the future and does not let the present struggles drag him down. His faith is unchanged and unshaken. He is an amazing father and husband. He is my inspiration.
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.
