Thursday, July 17, 2014

Beating the odds

Sometimes it thrills me to the core to see Elsie thriving and growing. I'm sure there are people out there who grow weary of me constantly bragging on her accomplishments, but it never ceases to amaze me what she can do.

I just read an article about a baby in Great Britain who was born at 23 weeks and is now 3 years old. He is deaf, cannot walk or talk, is oxygen dependent, has chronic lung disease, cerebral palsy, global developmental delays, and diabetes insipidus. The mother says that she feels guilty each time she looks at him; that she wishes she had not chosen to let him live when he was born. Instead of the suffering that he (supposedly) goes through every day, she wishes that the doctors had simply placed him in her arms when he was born and let him pass away peacefully.


Another article, which made me cry several times, said this:

"Some babies are born so early they are beyond rescue. If a baby is born at or before the 22nd week, it is usually considered a miscarriage or a stillbirth. Almost no doctor will intervene, because there is nothing he or she can do. Other babies ripen in the womb into the third trimester but arrive a little early. If a baby is born later than about 25 weeks, studies show that almost all doctors feel morally and legally obligated to try to save its life. Some preemies have serious medical problems, but most spend a few days or weeks in the hospital learning to breathe and eat and then they go home.
In between those scenarios is a zone between life and death, between viability and futility. If a baby is born after the 22nd week of pregnancy but before the 25th, not even the smartest doctors in the world can say what will happen to it. New technologies can sometimes keep these micropreemies alive, but many end up disabled, some catastrophically so. Whether to provide care to these infants is one of the fundamental controversies in neonatology. Babies born at the edge of viability force us to debate the most difficult questions in medicine and in life. Who deserves to live, and at what cost? Who decides whether a life is worth saving, or worth living? When does a fetus become a human being, with its own rights? When does life begin? About one in 750 babies arrives in that awful window of time, suspended between what is medically possible and what is morally right."
You should read the article. If you want to, that is. It was like I was reading my own story, in some ways. Click here to read it.
Anyway, the point of this already long blog post which I haven't even really started writing yet, is that Elsie is beating the odds. Fortunately, our doctors never gave us a choice of "should we save her or should we mercifully let her pass on". We were just told that they would do their best to save her, but that there was a 75 percent chance that she would not survive, and if she did survive, that she would be severely disabled in some way. How blessed we are to live in an area with a superb newborn intensive care unit, with excellent doctors and nurses who literally saved my baby's life.

When the doctor told us a few days after her birth that Elsie had severe bleeding in her brain , I was crushed. No parent wants their child to have disabilities. We were heartbroken and sad, but we already loved this small child so much, that ultimately, it didn't matter what shape her brain was in. We loved her enough to deal with the challenges that her premature birth would bring. 
As you know, somehow, miraculously, Elsie's bleeding stopped and her brain was unaffected. Her undeveloped lungs were scarred and required supplemental oxygen, which she was able to wean off of just months after leaving the NICU. Her eyes were damaged by Retinopathy of Prematurity, requiring two laser surgeries to prevent blindness, and she had to have corrective glasses for 6 or 7 months. Once again, she was miraculously healed. Her eyes are currently in nearly perfect condition. She has a gtube, yes, and we struggle with oral feeding and sensory vomiting every single day. But again, that is a battle that she will one day win. Elsie is small for her age, but so is her sister. She is behind developmentally in a few minor ways, but not enough to cause concern. She is learning how to walk. She can clap her hands and says "mama". She knows how to communicate to me to sing her favorite song. She smiles, flirts with her eyes, and laughs. Elsie is an absolute joy to be around, and if weren't for the puking, she'd be one of the easiest babies to care for, ever!

My life would be so different now if we had decided not to help Elsie fight for her life in those early days. If we had decided that life might be too hard for her to struggle through, that the odds were stacked against her, and that she might not have a good quality of life. She might have been severely disabled. But then again, she might not.

Even if she had been given disabilities, that doesn't mean that her quality of life would be terrible. I am blessed to know a few families with a special needs child, and have heard the parents say how their child has blessed their lives in unimaginable ways. It's hard, yes. It's not you would want for them to go through. But that doesn't mean that their lives are not worth living.

So as I watch my precious child learning how to walk, struggling to keep her balance, falling down frequently but always getting up to try again ... I can't help but marvel at how much she has been through and how far she has come. I don't know why Elsie doesn't have any disabilities, and why others do. It's a question that I sometimes struggle with, but it's nothing that I can ever understand or explain in this lifetime. That's not my job to explain, but the Lord's. And of course, there is still a high chance that Elsie could develop a condition later in her life due to her prematurity, such as a learning disability or ADHD, to name a few. But for now, I will simply be grateful for Elsie and her abilities and talents. For a baby that had a 75 percent chance of not surviving, she is doing great. For a baby that some doctors might have considered not viable, she is a living miracle.

She is succeeding. She is winning. Elsie is beating the odds.

Friday, July 4, 2014

18 months!

Today Elsie is 18 months old! My little Thumbelina is growing up so fast!

This is what has been going on in the last month:

  • We celebrated Elsie's One Year Home from the Hospital Anniversary! So exciting. I clearly remember the day she came home. Signing paperwork at the hospital, packing up all of her belongings, the signs and balloons that greeted us when we got home. Setting up a baby station of sorts in the living room, since that was where her huge oxygen concentrator machine was located, and trying not to trip over all of her tubes and cords. Feeling so happy to have my family together at last. It has been quite the year, baby!
  • Elsie took her first steps!!! She took two or three steps toward Clayton and we were so excited. Then she didn't do it again for a few weeks, the little stinker. But during this last week, she has been taking a few steps unassisted here and there, and is standing alone for longer and longer periods of time. We are confident that, although we have been saying it for several months now, we will definitely and for sure have a walking baby in our home very soon. Way to go, Els!
  • Elsie's vocabulary has picked up a few new words. She's still saying mama or mommy, and Clayton swears that he had her saying daddy, but I've never heard her say it, despite numerous attempts to get her to say it. Her most frequent word and most easily understood word is uh oh. She can also say baby, ball (balloon), "lolo" for hello, and can sort of say bye bye. Most exciting of all, Elsie can totally say Evje's name. It's so adorable (For those of you who are new here or don't remember, Evje's name is Norwegian; the "j" sounds like a "y", so her name is pronounced "ehv-ya" or "eh-vee-ya"). Elsie's pronunciation, which is really surprisingly good, sounds like "eh-bee-ya". Seriously, it's the cutest thing ever. I love the bond that my sweet girls share as sisters. Sisters are so amazing.
  • Elsie's making slow but steady progress drinking liquids. She prefers to drink water, but has also tried milk, apple juice, and Sprite, among other things. She still spits out a lot of the liquid that goes in, but is swallowing more and more. She kinda stopped liking her honey bear straw cup, but will drink out of a sippy cup, water bottle, or an open cup. It's pretty exciting. She still is not swallowing any foods but we're working on it. 
  • Last month, I talked about Elsie's stranger anxiety issues, which I'm happy to say have been getting better. We've been fortunate during the last week or two to be able to spend lots of time with various extended family members, and she is much more comfortable with everyone. She still prefers to be with me or Clayton, I mean, we're like her coolest parents ever so she thinks we are completely awesome, but is doing much better with other people playing with her or even holding her. Hooray.
  • Got her third tooth! This one came out on the top. Three cute little toothies! 
  • I'm pretty sure that she's getting a cold right now, so I'm really dreading the next week or two of Vomit-ville that I'm predicting will be upon us, but we'll see. Hopefully it will be very mild and won't last for long.
Elsie has made lots of exciting progress during the last month. Her personality is coming out more and more. She is such a fun little girl and we love having her in our family. We are so blessed!