In the preemie world, it seems that to many, RSV is a black box of wonder…you always hear about it, but really only know that you don’t ever want your kid to get it. Unfortunately, I’ve, somehow, drawn the short straw and have not only experienced RSV with one preemie, but with both of my boys so I thought I’d share my experiences and mom-to-mom give you a few things to remember about RSV.
I’ve mentioned both in this ANRC blog and CaringBridge that Owen has a form of brain damage that is a risk for babies born as early as he. I’ve never spent a lot of time describing it for a few reasons. 1) We needed to come to terms with it. 2) It often seems to me that scientist know more about Jupiter than the brain, so it’s not easy to explain. 3) Knowing what it is doesn’t give a ton of insight into what it means to Owen.
However, implications are slowly coming to light – especially with his eyes – and so I figured its a good time to put a name and brief description to the brain injury that Owen has and why it affects some of the medical and developmental decisions we make for him. As is the case with all medical information on this blog, remember, I’m a mom, not a doctor. I do my best to convey the information, as I understand it. I’ve included links to some sites on PVL so anyone with further desire to learn can get it from the true experts.
What is Periventricular leukomalacia (PVL)? PVL is an injury to the inner part of the brain that transmits information from one part of the brain to another.
What causes PVL? PVL is most common in premature infants. Those especially at risk are born before 32 weeks, weigh less than 1500 grams (3.3 lbs), are very ill due to infection at or near birth and require PDA surgery. Basically the smaller and sicker you are, the greater your risk for PVL. For reference – Owen was born at 24 weeks, 5 days, weighed 800 grams, had multiple infections, including one extremely bad in CMV and had PDA surgery at 8 days old.
What are the outcomes of PVL? PVL outcomes depend on the extent of the damage and specifically where the damage is. PVL can occur on one or both sides of the brain. PVL with Cysts (truly dead, not just damaged areas) is more advanced injury. The greatest risks are Cerebral Palsy and/or Developmental delays, vision and hearing disturbances, mental retardation, learning difficulties, epilepsy and behavior problems. Every child is different in terms of how well they are able to compensate for the damaged areas and early intervention through physical, occupation and speech therapies is essential in helping the child reach their maximum potential. Some children with PVL are only developmentally delayed and eventually “catch up” while others are physically and mentally impaired for life – the variation is great.
To what extent is Owen’s PVL? Owen has bi-lateral (both sides) PVL with cysts. The area of damage is relatively contained.
What are the expectations for Owen’s abilities in regards to his PVL? I’ll refer you to the Known Unknown post for the best answer to this question, but essentially his eyes are the first confirmed issue due to PVL. We also know that Owen has significant development delays – especially in gross motor and language skills, but that could just as easily be explained by the extent of trauma and illness that he faced in his first year. Owen’s development is tracked very closely by many doctors, therapists, a special education teacher from the school district and, most closely, by Kyle and me. With each day and every skill that Owen masters, I get more optimistic.
If you’re interested in learning more, below are some of the resources I found most helpful in understanding Owen’s diagnosis. The below are summaries, but I’ve also spent a lot of time reading research in medical journals. If you are a parent of a child who has PVL and would like to learn more about how to get to those articles, feel free to contact me. If you’re wondering how to cope with the new of PVL, I’ve shared our story here.
- Doctors are our advisors, not our decision makers. They have a lot of impressive credentials and talk in really big words, some of which I’ve heard a hundred times and still cannot pronounce, but most doctors we’ve met will say “no one knows a child like a parent”. The parent-doctor partnership is critical. Every patient is unique and, while doctoring is founded in science, practicing as a physician is an art form. It’s really important for parents to ask questions until they understand diagnosis and procedures so they can feel comfortable with what’s happening to their child. If you don’t agree, make them sell you on why it’s the best idea and ask what are the alternatives. Obviously, some decisions are imminently critical and you just have to put your trust into the doctors, but in most cases, it’s okay to put on the brakes until there is an agreement.
- Good nurses are much more important than good doctors, treat them with the respect and gratitude that they deserve. On a good day in the hospital, you will see the doctor once. To see a hospital doctor more than that means something is not going well. Nurses manage the day-to-day care and comfort of a patient and the family. They translate what the doctor just said, they bring you special treats like popsicles or warm blankets, they listen to and advocate for the patient, they wipe butts, give shots and IVs, block visitors when someone needs sleep and run around like mad women (and men) but no matter how busy they are, they always have time to give a patient or parent a hug. No one at the hospital has a greater impact on the quality of care than the nurse and 99.9% of them are amazing,
- Smile and make eye contact, you never know when someone will need it. While I am an extrovert, I also have deep Midwestern roots and we Midwesterners are raised to mind our own business (at least publicly). I’m also almost always in a hurry. These two qualities combined have resulted in me having the bad habit of walking at a rapid pace with my eyes fixed on no one. However, a few special parents in the NICU started reaching out to me and that’s when I learned the importance of relationships with those going through similar circumstances. I started doing the same and have been told by the recipients how important it was to them.
- When you have no words, a hug and shared tears speak volumes. It seems, it is human nature to do one of two things when you don’t know what to say to someone going through a difficult situation. We tend to pull out a cliché (like, “such a roller coaster”) that’s probably overheard by the recipient and starts to feel meaningless. Or, the much worse offense is to say nothing at all which leaves the (non)recipient feeling really lonely. Let’s be honest, there are moments in life when there is nothing to say to make the situation better. Shared tears say, “I hurt with you” and a hug says, “and I am here to hold you up” so much more authentically than any words you can say. It’s not okay to not acknowledge what the person is going through, but it is okay to acknowledge it without speaking a word. I will never forget one mom that I didn’t know well saying “can I give you a hug”. That hug got me through that day.
- No matter what your situation, someone always has it better and someone always has it worse. It’s okay to acknowledge and be sad about the bad, but never stop appreciating what’s good in your life. Without a doubt, the last year has been the most challenging in my life. I can’t say the cliché,”life’s good, everyone’s healthy…”, but I can say “life is good, I am loved and I love and I have hope and so many blessings”. There is not a day in my life that I couldn’t say that statement, so yes, there have been some crappy things that I hate happening in my life. But wallowing in the crap just means your smell bad and have a worse view. Knowing what’s good in life is essential in swimming through that crap.
- When someone comes over and your house is a disaster, forget the house and enjoy their company. Before kids, most Saturdays I took five hours to clean our house. I now snicker at that thought. Five hours dedicated to one fulfilling task, what a luxury that I didn’t even know to appreciate. I’d still be really proud to be able to offer that to my guests, but reality today is I’ll do my best to have the kitchen cleaned and a bathroom that’s guest friendly and if they aren’t, I apologize and say, “welcome to our lived in home”. What I’ve learned is most of them really don’t care and understand completely. They don’t have less of a good time and so neither should I.
- Most of the time when your toddler is kicking and screaming about what he doesn’t want to wear, he just needs a hug. Some really tired mornings, I forget this lesson, but I must say, I can’t believe how many times Kellen has been snapped out of a temper tantrum by a hug. He’s hurting too and can’t always find the right words. It’s a lot like the lesson a few above, there are no words that will make Kellen feel better, but hugs are pretty magical.
- Be open to those that reach out, you never know who will get you most right now. I’ve been struck many times at the people who I wouldn’t have considered close friends who said the right thing or knew the right night to drop dinner by or had the best ear to listen to me talk. A good example is one woman who I really only knew in a professional context. I’ve always enjoyed her company and we typically checked in one or two times a year. Since I went on bed rest, she’s been really proactive in checking in with me and visiting at the hospital or our house and every time she leaves I feel like she’s walked away with 10,000 pounds from my shoulders. Interviewing and listening happen to be skills she uses in her consulting profession, so it’s something she’s really good at but I’d have never known that until she started reaching out to me. She had no obligation to become my friend through this year, but she did and so did many others from walking the dog to flying Cyrus to AZ to sending presents to the boys to leaving notes on CaringBridge. So many people we didn’t know well, or at all, have lifted us up through this year. You never know who will be there to help, but it seems someone always is.
- What empathy feels like Empathy is an emotion that I’m not good at allowing myself to feel and it’s something I still work on. However, now that I have felt empathy from others and seen how good it feels to feel for others, I realize just how important an emotion it is. I can’t explain it fully, and it’s nothing you say, but to me, empathy is making someone feel like they aren’t alone during one of the most lonely times of their lives. There is nothing more powerful – not even a hug.
- Getting through a difficult time doesn’t take strength, it takes work. “I don’t know how you do it” is a statement I often hear people say. “It” in this context typically means stay sane or just have the stamina to keep going. For both, the answer is the same – I work on it every day. I work on healing, I work on being a good mom, I work on being a good wife, I work on accepting, I work on not settling. Some days, I can only be a good mom, other days I can do them all, but I work on accepting that too because giving up is not a real option. I work hard because, right now, I don’t have a choice in much, but I do have a choice in what I take away from “it”.
For anyone who has had their own time of challenge (everyone), I’d love to hear what you’ve learned in your journey.