Friday, November 18, 2011

What to do for a Parent of a Preemie.

Our little 25 weeks, just a few days old with Dad's wedding ring on her itty bitty foot.
Her little hand over in mom's over her face at a few weeks old.

One in eight babies will be born before 36 weeks, in the United States this is 12.8 percent (nearly 1/2 million babies per year). The rate of premature birth has increased 36 percent since the 1980's. Though medical intervention and support at our nations excellent neonatal intensive care units (NICU's) are turning most of these premature births into success stories, many of these premature babies will never come home.

The lifelong impact of being premature, is something felt by the infant and also by the whole family. A premature baby is at risk for both major disabilities and developmental delays, as well as many other health problems. The family has to not only deal with both the long-term and short-term health complications of a fragile baby but also has to deal with trauma and stress of surviving the ordeal of a premature delivery and possible high risk pregnancy.

Though, far from an expert in how to handle the fragile family in the NICU I have more experience than many. Our daughter born at 25 weeks, spent 90 days in the NICU. After her recovery though she has done marvelous, we have spent the last 2 years in follow ups, early intervention and continued medical care. Now, having entered into the scary world of our second high risk pregnancy we have already been in and out of the hospital and know all to well where we are at in our fragile pregnancy.

I found the NICU experience to be one of the most challenging, terrifying and yet somewhat rewarding experiences of my life. I learned from a marvelous staff, on-line support groups and friends and family how to navigate my way to other side of such a traumatic birth. We have become a stronger family, better people and more courageous than we knew possible along the way.

So on today National Prematurity Awareness day, I wanted to share with you what others have done for us that made our journey easier. Its not easy for others to know what to say, or how to offer help. Often people have their own emotional history that makes it difficult for them to handle medical emergencies. I hope to just give a few helpful hints, that you can use if anyone has a premature child or a child in a medical crisis.

1. Say CONGRATULATIONS, your infant is beautiful. You are doing a wonderful job.
This sounds easy enough but at the time it might feel awkward and fake. I say who cares, fake it. The situation is awkward and difficult. This is not the chubby cheeked baby that the parent expected, or like any baby you have ever seen. There may be wires all over the place, they are most likely in an isolette or a hood, and may have either a ventilator or CPAP connected to them.
Bottom-line they are alive! That is not an easy task for something that is between 1 lb and 8 lbs, with medical complications and possibly born 4 months before they were supposed to be. And that life is beautiful, special and something this family has dreamed about for months or years.

You don't have to go overboard, and try to keep it from the heart. And if you really can't do it with some sincerity then okay don't say it. Try telling the mother or father that they did a wonderful job, heck if they are able to sit up or not cry during the first days or weeks then they are doing a wonderful job.

2. Let the parents lead in conversation, and with the details. Be a good listener, which means to be quiet and patient.

As a parent in this situation you are all over the board at any given moment. Mom's have a rush of post-partum hormones, waves of guilt, anger, depression, confusion and are often still being medicated post delivery. The medical situation changes nearly every hour. The parents have been in the hospital far to long for anybody to be sane. The baby has more doctors and specialist and nurses than you knew existed.

I know that you care, that is why you want to ask a million questions and get to the bottom of the whole thing. Unfortunately this is not the time, and may not be for months or ever. Nearly 80% of premature births are of unknown cause. Your questions will often be felt as accusations, or criticisms. They may seem very reasonable to you, but you are not the person that hasn't slept, is hormonal or in the crisis directly.

As time goes on, realize as well this parent has to talk to anywhere from 5 to 50 people everyday about the state of their child. It is exhausting, especially when the infants status can change between stable to needing to go to emergency surgery in the matter of a few hours. If a parent is quiet, grouchy, unrational it really has very little to do with you.

I always found it most comforting to just have people sit, listen, sometimes touch me and just keep trying. Sometimes I felt like sharing, other times not. I really couldn't deal with your emotions or needs, I couldn't even deal with my own. And for some parents this can be months and months of dealing with the hospital so, don't stop with this step maybe even be for years.

Don't forget about the other family members either. Mom's get a lot of the attention, and are often more vocal about their emotions and needs. They are not the only family member in the situation, don't forget about those dad's, children and others member of the immediate family that may need some one on one time. Or hey, in the world of dad's maybe they just want to watch a football game for bit, or talk about some other interest.

3. When in doubt DO some of the simple things.

As I said above, hospitals, crisis, and emotions are really difficult for a lot of people. Maybe you just can't handle talking or coming to visit. Well, don't just run away from these people that need you. There are other rather simple things that really can be done to make their lives easier.

Parents in the NICU need things, and buying something and having it delivered usually won't be to hard. I was able to recieve packages at the NICU, which was a nice surprise when I got there (call before and ask the NICU directly to make sure it is allowed.). I recieved books, cards, dvds, blankets, preemie clothes, pampering supplies, pens and food.

We received donations to the Ronald MacDonald House were I was staying. Gas money really started to add up, and we got gas cards and credit cards with money on them. We recieved money and checks from people we barely knew, but it helped with medical cost and me being out of work for so long. Somebody gave us a huge Starbucks card, that I literally lived off it for a few weeks.

Then there is everything they need help with at home. Cleaning, cooking, errands, kiddo watching, the list goes on and on. Picking up mail. People had to come mow our lawn, and vacuum our house both things my husband and I just didn't even remember needed to be done. Make casseroles and stock up the fridge, because there will be times (alot of them) when nobody has energy to cook and when even more so when the baby comes home. See if there are any home improvement project or final baby project they need done.

I suggest that you don't ask the parents about a lot of this either, just do it! I said no to about everything people offered to do. We were fine, we could handle it. No we weren't fine and no we couldn't handle it, but I also couldn't handle coming up with ways people could help. I barely remembered to feed myself everyday, so who knew what needed to be done at home.

I know that this is hard to just do things for people without them telling you its okay or what they need. I still encourage you to do it anyway. I remember there was a women I hardly knew when my daughter was in the NICU, and that lady just wouldn't back down. She would show up with cookies, with smoothies, invite me to dinner, bring me craft supplies. I know I wasn't nice and I always acted like I didn't want anything, but you better believe that later I would start to eat her cookies and drink the smoothie. I don't know why I was being so difficult, I just was. Then one day I went to leave the NICU and my car wouldn't start and of course I had to be somewhere in a set amount of time. She was the first person I called, and she came right down. Even today, I think of her as a little angel that just kept answering my unsaid prayers when I needed it most.

4. Be a friend, be yourself and just keep doing it.

Lastly, do just that be a friend. This is the time when somebody needs others to be so unselfish and caring. They need time and understanding, and compassion. It will be ugly at times and maybe even hurtful, that is what life is all about. Just don't give up on them or their situation, keep being that compassionate person that you are.

My family has lots of little living angels that helped us with the birth of our first daughter and our helping us with the birth of our second daughter. They have made my life richer and happier in ways I could never fully express to them. I am forever gratiful to all of them, and just try to pay it forward to them and others in their times of need.

Please remember to support the March of Dimes on Premature Awareness day November 17th, and all year long.

**** P.S. I know this is a day late for premature awareness day but, we had a little medical event with this pregnancy and were down at the UW hospital for a few days (all seems well for now), so I was unable to get this posted on time, so sorry but still hope it helps!****

Our big 2 1/2 year old getting ready to celebrate all that we have to be Thankful for now!

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