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Surviving the Post-NICU Roller Coaster

survivingpostnicurollercoaster

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The nurses kept saying that the ups and downs of my son’s NICU experience were all just “part of the roller coaster ride of the NICU.”

The NICU, to me, was not a roller coaster. There was nearly nothing fun about it. Our NICU ride left me dizzy, uncertain of which way was up. It was as if our family was a human yo-yo with our son at the core, being jerked around but not certain if we were going anywhere at all or if everything was about to unravel.

Melodrama aside, there IS a roller coaster ride attached to the NICU experience. For us it came after the NICU, in the ups and downs of seeing just how the early birth of our son would affect him long-term. For us it was a long journey searching for answers and learning what each of those answers meant. It was full of lurches up and down as well as unexpected smiles and joy watching him grow. It was a ride well worth the valleys and heights, but it was hard.

It took over a year of tests and questions before we finally had answers. We discovered along the way just how different each baby is, and how our son – while fitting some of the expected labels for a baby born at 23 weeks gestation – continued to be his own small mystery. Just as we were getting comfy, we’d get a diagnosis that seemed to come out of left field and we were floored. At other times, the diagnosis came as a relief, an answer to our worries.

Here are some tips for riding the post-NICU roller coaster: 

  1. Remember you are an integral part of the team. If your NICU staff was good, you already know this. You learned that your input is important and you grew into your advocate role. As a consistent presence in his or her life, you know your child best.
  1. Listen to your gut, and then question your gut. I remember my heart sinking and my stomach tying in knots as a surgeon described a recommended procedure. I couldn’t figure out at first if it was because I didn’t want my baby to go through one more thing, or if there was another reason for my hesitancy. We spent time making a decision, and in the end I am convinced that our decision was right.
  1. Take notes & stay organized. I wish I’d started earlier with this. When my son received an unexpected diagnosis, my head was spinning so much that I barely took in the doctor’s words. I left the neurologist’s office confused, and had to call back two days later both to confirm that he was really and truly diagnosed with this new issue (that it wasn’t merely suspected) and to find out how to spell the darned thing. On my best days keeping a calendar that doubled as a notebook helped me stay put-together. I like the ones with an extra pocket. Most information is in my phone, but this calendar-notebook allows me not only to jot down notes at doctor’s offices, but gave me a place to stash away office handouts, insurance information, and business cards.
  1. Make lists – lists of questions, lists of things that don’t seem right, lists of issues that may or may not pertain to the puzzle that is your child. I take these lists to the doctor’s office and double check before we’re done talking to be sure we’ve covered everything. Doctors see many patients. You only see your child. Help your doctors to see your child well.
  1. Patience & Persistence. In the NICU “patience” means wait a few days or weeks – a month or so at the most – for the next step. Outside the NICU it sometimes takes longer to get a diagnosis. Be patient as you walk the long road of questions. That said, if you don’t feel like your child is getting the attention they need, drop a note to the doctor. Send an update to the nurses. Let them know how things are going or if something has emerged and is alarming you. I found that simply mentioning his case often got me a phone call that led to a new avenue to pursuit. While being patient, also persist. Ask where else you can turn, what other avenues you can pursuit, if there are other specialty clinics to look into. Ask “is there any reason why we shouldn’t have [name of specialist] check this out, just so we can check that possibility off the list?”
  1. Be forthright. Just as you want the doctors to have you be a part of their team, so too do you have to be honest and upfront with them. If you haven’t followed a treatment plan fully, let the doctors know. If you’ve seen something unusual, state it without over explaining it.

    One of the biggest puzzles of my son’s medical history was solved by an honest answer. He was at a routine office visit with a specialist doctor. I thought this would be the last time we saw this specialist – one last check on things. I also thought that there was nothing this doctor could do about my son’s mysterious issues. But before we got into the checkup portion of the exam, the doctor asked one simple, straightforward question. “How’s he doing overall?” And, for whatever reason, I came back with a straight-forward and truthful answer, “Good. But low energy, and we don’t know why he’s not gaining weight.” He gave a half-smile, “I might be able to help with that,” he said, “Let’s run some tests.” Within a month, my son was on medicine that changed his energy level dramatically and helped him to start gaining small bits of weight.  After a year of searching for answers, this diagnosis felt like a gift. I’ve teared up regularly watching my son change into the energetic toddler I’d longed for. I am glad I was honest.

  1. Learn – know your source, though. Read a lot so you’ll be able to ask better questions and understand answers better when you see your specialists. Like with any information, though, know your source. Mayo Clinic’s website is often a good, easy-to-read source of medical information for people who are not doctors. Scholar.google.com is a search tool that will give abstracts from medical journals and books, although these can be hard to understand.
  1. Find community. A new and unexpected diagnosis can be daunting. No one understands better than those who have been there. The internet full of websites and groups that may help you feel less alone. For one of my son’s diagnoses, I came home confused only to discover my neighbor had experience with the same condition. I found instant community and hope. On the other hand, one of my son’s other diagnoses is rare. I have scoured the internet for sources of community, and found none. I felt we were alone.But we’re not alone. We’re surrounded by a community that wants to understand my son’s rare condition. Those true friends and family members may not understand, they may not have been there, but they want to walk with us. I lean heavily on them when things get hard, and they help us make it through one more day. More than that, friends and family help us to love and laugh at the days in front of us, to enjoy the ride we’re on, even with its unexpected turns.
Laura Maikata About Laura Maikata

Laura Maikata (MI) is mom to three fantastically unique children, the youngest of whom was born at 23 weeks due to preterm labor. Within months of finishing a MA in Teaching English to Speakers of Other Languages (TESOL), Laura found herself as a student, instead of teacher, of a different kind of foreign language – the language of medical professionals. In the NICU her son, nicknamed "JAM." had surgeries for a PDA, NEC and AP-ROP. More on JAM's tenacity for life can be found on Laura's blog or on Twitter.

Comments

  1. These are all great tips. I love the one about seeking community. I would like to add that it may help to seek parents of older kids with the same condition, or if the condition is lifelong, adults with the condition. I am an adult former preemie, and have foudn that Mutual support from adults to parents and vice versa can be helpful.

  2. Laura, I love that “finding community” is one of your suggestions! It’s heartbreaking to hear when there’s a discord between preemie parents and their friends and family who don’t understand the devestating effect of being in the NICU.

    I also recommend partnering with parent associations that are part of the hospital. This might be an advisory group, like the one I had at Mt. Sinai in Toronto, or a larger body which works with the entire hospital. It really helps clinicians understand the family perspective, as well as makes inroads towards better family experiences in the future (for ourselves if we happen to have a preemie again or new families). Thanks for sharing!

  3. Lesley,
    Great idea! Some hospitals also have parent partnerships that pair NICU grad families w current NICU families. Through training to be a part of that program, we met several other parents of NICU grads. They provided great support! Here we were trying to learn how to support current families of NICU babes, and we found ourselves also supporting each other as veterans.

    Any advice on how families can find out about these sorts of programs?

  4. Hi again. First I’d suggest with asking any nursing staff if such a group exists within the hospital. These days, it’s not unusual for a hospital to have a patient advocacy group. However, a parent group, who are not patients themselves, is a rarer thing. If one doesn’t exist, an eager parent might suggest starting one. It’s how ours started several years before I joined. http://www.mountsinai.on.ca/care/nicu/parent-support-1/perinatal-parents-association Keep in mind that hosting meetings should be to partner with the hospital, not antagonize the staff. Also, it may be the only way outside the hospital in which some parents can connect. Just like our preemie’s journey’s home, creating a parent associate may take thousands of baby steps!

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  1. […] the Preemie Babies 101 blog, Laura Maikata wrote an interesting post on surviving the post-NICU roller coaster for parents of preemies. Indeed, premature birth affects children long beyond the NICU, sometimes […]

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