Saturday, November 17, 2012

Spotlight on Preemies...My Preemies

Today is WORLD PREMATURITY DAY... We are wearing purple for preemies all around the world.

In honor of today I guess it's only fair that I answer my own questions right in my Spotlight on Preemies?

Here goes nothing:

Who are your preemies? Tell me a little bit about them...

My preemies are Addison and Blake. Born at 26 weeks (14 weeks early), weighing (Addison) 1lb 10ozs & (Blake) 1lb 14ozs. Addison had quite the rough start...her sack ruptured at 20 weeks and against the odds I was blessed enough to stay pregnant until 26 weeks (just two short weeks past what is considered viability). And infection is what ultimately caused me to go into labor on Valentine's Day no less. Addison had Chorio and my OB mentioned that had we waited any longer we would have lost her and that Blake was coming close to being infected too.

Addison spent 153 days in the NICU and atleast half of those days were spent on a ventilator or some type of O2 equipment. Within her first day of life she had coded upon admission to the NICU, was on the Oscillator and had a chest tube for a collapsed lung. I will never ever forget that first night, starring at Dr. K as he asked us "How far do you want me to go? Things are not looking good and even if I do all I can it may still not be enough." And being asked if it was our wish to have our daughter baptized that night, as it was a grave situation. But I will also never forget that next morning when he said "I cannot explain this. All I can say is will we take it minute by minute and do all we can to support her in anyway we can."  Nor will I forget day 153 when Dr. K walked in her room as the other Neo was writing her discharges papers, with such pride and amazement, congratulating us on defying the odds and bringing our baby girl home. She suffered bilateral (3 & 4) brain bleeds, that were resolving at discharge but their long term effect has yet to be seen.

Blake had a slightly shorter stay at 105 days. He too did some time on a ventilator, extubating himself on more then one occasion, CPAP and Nasal Cannula. In fact he even came home on oxygen and a monitor for feeding. (Addison did not.) For the most part his stay was mostly uneventful. We had a MRSA scar and a Grade 3 brain bleed which resolved on its own prior to discharge. To date he doesn't seem to have any lingering effects of his prematurity and we hope that this will hold true for the future.

How would you say Your experience has effected you?

I would say this whole experience has changed me dramatically. It's made me a better person for sure (atleast I think so anyway). I found strength I never knew I had. Suddenly little things that I thought were important didn't matter. I discovered what really was important. And I learned to love beyond measure, never take a moment for granted. Things change in the blink of an eye. And I also found a renewed faith in God. And it made me tougher, and not as easily manipulated. I knew I had to stand up for my babies, advocate for them and be their voice. I hated confrontation but suddenly my mother bear instincts kicked in.

How were you able to handle the NICU experience?

I was able to handle it with a lot of support. From my husband, our family and our closest friends. I also needed to talk to other people like me who knew what I was going through. Finding a good support system is truly what helped me survive.

And truthfully that is all I did... survive. I ran on pure adrenaline for months. It wasn't until after they came home from the NICU that I truly began to process it all.

Before this experience what did you know about preemies?

Before my water broke? Little to nothing. I knew preemies existed and what "defined" one. I also learned that a friend of mine had a 32 (?) weeker just after I made it into my second trimester, and that she survived and was doing well. I didn't know all the details but I knew she had a NICU stay.

After my water broke? Maybe a little too much, and maybe not enough. I immediately started googling statistics and success rates and a million other things. I reached out to other mom's on bedrest and even other preemie moms, because at that point we pretty much knew it was going to happen, we just didn't know when. In some ways I feel like those 6 weeks of research and wondering gave me hope and prepared me for things that some preemie moms didn't get the chance to prepare for. Did it make it any easier? I am not sure, but I think it did impact the way I looked at somethings. But I was still in no way truly prepared for what laid ahead of us.

What have you learned from all of this?

One, not to be brass, I learned who my real friends were. Who was going to stick by us no matter what and who would really "understand" (as much as one did understand without first had experience).

I also learned that even the best laid plans do not always work out. Things were way beyond my control and there was very little that I actually did have control over. I learned that I had to have faith.. in God, and in my fellow man. Faith that someone other then me could save my babies.

What advice would you give to another preemie parent?

Find a support group. Advocate for your child. Only gather information on things that effect you or your child in the moment. Don't read too deep into other preemie conditions or what ifs. Stay focused on the moment. Even though it is extremely hard to do, take a moment for yourself. If it means you don't wake up in the middle of the night to pump breast milk, take that break. You have to make time for you, because you will need that energy to keep going. And be prepared for the roller coaster. The first few days can sometimes be the honeymoon phase, be prepared for it to get worse and be surprised when it gets better. There will be a million ups and downs and then things will stay status quo and it will feel like years before you baby is home. Trust me that this too shall pass, and it will get better.

My babies alone have impacted the lives of many around them. They have a purpose in life and a story to tell. They have changed my life in so many ways.

If you someone you know has a preemie, be there for them. Offer to bring them dinners, clean their house, cut the grass, walk their dogs or simply just listen. Don't ask questions just let them talk to you.

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