It's one thirty a.m. I've been asleep since nine but it's my turn to take the late shift so up I go. I've been sleeping on a mattress on the ground in the spare room while Luis holds, plays with, and provides care for the baby, now eight months old but .measuring the size of a three month infant. We are trying to assist her in getting rid of her G Tube, a necessary yet vile device that provides her with the fluids and nourishment she cannot eat herself, scarred and traumatized as she is from her grueling NICU stay. It's a blessing but also a curse. She's growing and her health is improving daily due to the high quality milk I'm still miraculously able to provide her, but it is disgusting and tons of work. It often leaks the contents of her stomach- partially digested milk, stomach acid, and mucus- onto her bed and clothing. The tubing requires regular changes as sterilization, and I have to keep a fabric pad under the valve that connects the tube to her stomach to prevent chafing and granulation tissue which bleeds onto her cute Carter's jammies. It's a strange juxtaposition of sweet infant comfort- cotton jammies printed with lambs, bees, hearts, and monkeys, and medical tape, gauze, and a leaky valve that spills what is essentially vomit all over everything. It is made stranger by the sleep depravation and the need to change her diapers, tubing, padding, and clean the skin around the valve every three hours. Dad goes to bed. It's my turn. I warm up soapy water and milk. I check the baby. The cap on her valve popped open. She's drenched in hot, stinky, milk. I strip the bed, the baby, change the linens. It's already nearly two a.m. I check her oxygen tubing and apnea monitor, dress her in clean clothes, flush the valve with sterile water, change her dressings. She's swaddled now and ready to feed. Now comes the real work- teaching an eight month old with severe oral aversion to eat- a process that involves a lot of trial and error. She can't swallow regular milk because the scar tissue from the ventilator numbs her throat and she can't feel fluid that thin so she chokes so we thicken her bottles with purred baby banana food. She only likes one specific type of nipple which we discover after spending a fortune on every type of bottle on the market, testing which she'll accept into her traumatized little mouth. She has reflux, which requires medication, frequent burping, and feeding on her side, laying down on a pillow. The entire process has been refined one Agonizing detail, one precious mililiter at a time. It's a good night. She takes 75 mils- a full feeding. I burp her, reswaddle her and lay her down. I set up the feeding pump which will tube feed her in a few hours. The occupational therapist says she'll learn to eat faster if I bottle feed her first, but it's now 2:20 and her next meal is at four, and I have to work tomorrow. I mean later today. I put everything away and take out my breast pump. Breast is best, and despite all odds I've managed to feed her exclusively fortified breast milk since birth. It's offered her protection against illness, which could save her life if she contacts a virus- even the flu can be deadly to a baby with compromised lungs- and it offers her superior nutrition which is vital to her growth- the only thing that will "cure" her breathing problems. Pumping takes time, which I don't have tonight, but which I must find. Twenty minutes is all I'll give myself- enough to keep up production. I cue up Breaking Bad on Netflix and get to work.
I finish up around 2:45, stash the milk in the mini fridge by my bed, and pass out, exhausted.
Wonk! Wonk! Wonk! Wonk! Wonk!
It's 3:05. The stickers that attach the apnea monitor to my daughter's chest have come loose when they were drenched by leaked milk earlier. I grab a new pair. Reattach them. Reset the monitor. Go back to sleep. 3:15
Beep beep beep beep! Beep beep beep beep! 4:30- time to start the feeding pump so baby can get her next meal. It runs quickly, simulating a bottle feed to maintain her stomach's elasticity. I doze for twenty minutes until yet another alarm- Beep boo! Beep boo! Beep boo!- alerts me it's finished my work for me. I disconnect the tubing from the stomach valve, triple check to make sure it's closed this time, flush the port with clean water, cover her up, and go back to bed. long We'll wake in three hours to start our daily routine of physical and occupational therapy, work, chores, and daddy. Every day I sterilize every hard surface in the house with Clorox wipes. She can't get sick. Even with the support of breast milk RSV could kill her.
Bringing a baby home from the NICU is just the start of an excruciatiny long journey. When I brought Rosie home, the stress of the awrsome responsibility placed on me, the never-ending medical interventions, and sleep depravation triggered severe PPD & PTSD. I would have been suicidal if I hadn't had such an unbreakable bond with my baby coupled with the sure knowledge that she would undoubtedly suffer unspeakably were I not there to safeguard her every step of the way. I was so tired and emotionally exhausted I fantasized about death daily, but felt ashamed to talk about my feelings and totally unaware how to schedule any time for myself to get professional help or even provide myself with basic self care. I stopped showering, brushing my teeth, combing my hair. Had Luis not taken over laundry I surely would have stopped wearing clean clothes. I was so scared that being away from Rosie would ensure harm to her that I kept both of us locked in my master bedroom (figuratively & often literally) all day, every day for nearly six months. I left only for work. I only went downstairs to get food. Luis took over the shopping months before, the house cleaner my mom hired did chores, I washed and folded laundry and obsessively disinfected everything, and fed Rosie every three hours according to her NICU. Schedule. I napped when the demons were at bay, and scrapbooked to keep them from devouring me the rest of the time. I prayed angry, begging prayers, demanding relief constantly. It was too hard. I was losing it.
I couldn't invite my well intentioned neighbors and friends in for fear of disease and because there were simply too many machines to run. My daughter was covered with tubes and wires connected to life saving devices until shortly after her first birthday. Whatever relationships I had outside of the internet shriveled and died. But as my personal self deteriorated, my daughter thrived. She exploded onto the growth charts, catching up with her ACTUAL age by nine months (a feat which takes most micro preemies years to do.) she started reaching developmental milestones on time, and got off of her detested feeding tube by March, only four months after having it placed. This is extraordinarily rare, as most tube fed babies rely on the device for nutrition and fluids for at least a year, and often much longer. She sat up on her own by nine months, and was working on crawling by a year old. She said her first words before her first birthday. She was shining like a diamond.
I wish I could say there was a magical solution to the agony and isolation of having a child with intensive medical needs but there was not. It was a long process of painstakingly slow baby steps, day after day, month after month, punctuated only rarely by sudden bursts of development. She didn't crawl for real or go from laying to sitting on her own until eighteen months. She didn't walk until 26 months. She couldn't stand herself up without pulling on a support until THIS WEEK.
But we are blessed, and she is truly flying now. The journey to get her (almost) "caught up" hurt in every way and taxed every literal and figurative resource both her father and I possess. But it was with it. She has always been my sweetest comfort and dearest little companion. All of those long, lonely, difficult nights brought the three of us together in a way impossible to describe.
My advice to those of you reading who have a child with special needs is simply to not give up on yourself and your kid. Keep good records of their growth and development so that when you hit a brick wall and despair kicks in (that special brand of "it'll NEVER get better!!!" despair that only we know) you can look back and realize how far you've actually come. Celebrate EVERYTHING. Give yourself a break. Don't self medicate with food- it only makes you sick- it doesn't fix your kid. Don't stop talking to your spouse because they're the only ones who really get it. Take naps. Get massages. Talk to someone if the despair gets too heavy to carry on your own. When someone offers to help, LET THEM!
If you know someone with a special needs baby, ask questions. Be emotionally present, and don't get squeamish if it's not good news. Pop in with good nutritious food whenever you can. Offer to clean whenever possible. Realize that bringing the child home from the NICU is the beginning of the hard part, not the end, and adjust accordingly. When in doubt, just send a text asking if they need help. Realize that there's often nothing you CAN do, but that just offering is often enough.
Thank you to those of you who have been there for us over the past three years. I regularly look back and see angels all around us both from heaven and here on earth. Rosie thanks you, too. I know she's happy to be here, and grateful for the chance she's been given to live a full life. At two years and seven months old she's defied all the odds, and I know that she has a bright future inn front of her. She's living proof that miracles exist.
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