Wednesday, July 25, 2012

To be A Mother of Preemies

I have sat in the NICU and waited.
I have cried and prayed.
I have endured.

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.

I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.

Whether I parent a preemie with physical challeges or medical issues, I will not be careless with my love.

I will be a better mother for all that I have endured.
I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely.
I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard.
I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.

Yes I will be a wonderful mother.

-Author Unknown ♥ ♥

Saturday, July 14, 2012

Home!

The girls are now HOME!!! They were released yesterday and we're so glad to have them home with us. As you can imagine, its a bit hectic for the moment, so I'll post a few photos and update later.

Thursday, July 12, 2012

Finally...

Finally the finish line is in sight! We were told today that if the girls gain weight and pass the car seat test, that we can take them home on Saturday. A part of me doesn't quite believe it yet, and may not believe it until Saturday when we're putting them in the car. I didn't know this journey would be so difficult, long, and emotionally/physically exhausting. I have been admitted or visiting the hospital every day since March. It really has been a long time! This week marks 12 weeks since I had the girls and 15 since I was admitted. Needless to say, we will not miss the hospital. I will however miss some of the nurses we've had... the girls have gotten such good care. I can't say enough positive things about it.

Since I have not updated for a couple of weeks, I'll update what has happened with Lily and Claire lately. Lily's blood pressure was high for a few days in a row and they decided to order her a kidney ultrasound. Claire's blood pressure was border line high, so they decided to give her one too. The results showed that Lily's kidneys seem to be fine-- there was question whether one of her renal arteries was smaller than normal but the nephrologist decided it looked fine. Claire's ultrasound showed two small renal arteries, calcification, and overall her kidneys showed up bright. The nephrologist explained to me that the brightness indicated past trauma (and we all know how stressed her kidneys were shortly after birth). The calcification also is a sign of trauma. She reminded me how lucky Claire is and told me that she's going to be just fine. She'll have a follow up in 3 months and is at increased risk for hypertension in the future, but she decided to not do anything regarding their blood pressure since it's just borderline right now. We'll continue to watch it, just in case.

Lily and Claire both have had some issues eating. When feeding them, they would act like they were in pain and not want to take their full feeding by mouth. After a few weeks of this, they decided to order a swallow study. A swallow study takes films of the baby feeding and shows if any of the milk comes back up (reflux). They also thicken the feeding as they are taking pictures to determine what thickness works the best for the baby. It was determined that Claire has moderate reflux and Lily's is a bit less severe. As soon as they thickened their feeding the girls have done so much better. They no longer seem uncomfortable and eat larger amounts. Because this seems to finally be under control, home is right around the corner! We can't wait to finally have some normalcy again... or what will become our new normal at least (with twin babies in the house)! :)

We'd like to thank everyone for the kind words, thoughts, and prayers sent to the girls throughout this time. I cannot count the number of emails, cards, etc I have received from family, friends, and strangers who have been touched by their story. Prayer chains were started in several states and even in a couple different countries. It's pretty neat to think that two little girls, less than 4 pounds total at birth, have made such a difference already & touched so many lives. Joe and I are so blessed to be able to call Lily and Claire 'ours'. We're completely amazed by their strength, fight, and will to live. We've learned that strength has nothing to do with size. This journey has taught us just how fragile life is, and what really matters. We are so glad to be at the end of this road.