Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

NICU Day 35 October 19, 2010

Filed under: Lila — Aimee @ 1:28 pm

There are so many thoughts and emotions that fill my mind and heart every day, but I don’t always know how to verbalize them. As a writer, that’s very frustrating. Please bear with me as I try to unblock my mind. Disregard the incomplete sentences, poor punctuation and misspellings. Copy editors anyone?

I arrived for Lila’s 9 a.m. cares hoping to catch her awake for a little one-on-one Mommy time. Much to my surprise, my little night owl was wide awake for a long time! She’s doing great at breastfeeding, but gets frustrated after awhile because her bellly doesn’t get full as quickly as it does when she’s fed through her NG tube. Persistence is key. After I fed her, rocked her and tucked her back into her crib, I stepped out for a bite to eat. When I got back to the NICU, I turned the corner down her hallway and could hear her crying … wailing. The nurse couldn’t get her to calm down, so I picked her up and she stopped. What a wonderful feeling it was to be able to comfort my own child like that. Seriously, good stuff.

Today is a big day for Lila as she becomes a NICU graduate. She’s moving across the way to the Infant Care Center. We are so thrilled about this move. We’ll miss our NICU nurses (Ashley, Kelley, Shannon, Kris, etc.), but we know we’ll make new friends in no time and we hope some of our NICU nurses can visit. Her move to ICC has a bigger psychological meaning for us than anything. Sure, the rooms are bigger and they have their own bathrooms, but it’s one step to closer to having the entire Tjader family together under one roof.

Today is also filled with sadness as I fill out a card in remembrance of Natalie Evelyn Teegarden. I never met Natalie, or her parents, Steve and Jennifer. They live in New York. But when my water broke at 18 weeks, I found Natalie’s story and continued to follow her courageous six-month NICU journey until she went to heaven this week. Like Lila, Natalie was born early after being in the womb without amniotic fluid. This is where I find it hard to describe my feelings. It’s hard. Through the wonderful World Wide Web I’ve met so many women who were going through what I was going through. Fear. Unknown. Bedrest. Faith. Anger. Sadness. Natalie’s mom was one of them. I will never understand why some of these babies made it, while others didn’t, but I’m forever grateful to the women who chose to share their stories with me and the world. Another one of those people is Brandy. Her little boy, Clark, is 9-months-old. Like Lila, Clark was born early after Brandy’s water broke much too early. In closing today’s post, I’d like to share an excerpt from Brandy’s blog. Her words somewhat describe my feelings today and give some insight into what it’s like for a pPROM mom post-NICU. For a little inspiration, I encourage you to check out her blog: http://superboyclark.blogspot.com. And please pray for Clark and his entire family as he undergoes surgery tomorrow.

Loss
by Brandy Kelley

Here I am, at 5am, sitting on the couch I spent 71 days on last year.  I can’t sleep.  Exactly one year ago, my life changed forever.  I came to know the meaning of pPROM, I learned what it meant to fight for someone’s life.  Someone I didn’t really even know.

Looking back on this day a year ago still sends me to tears.  I can’t explain the feeling of making it to the 2nd trimester after a more-than-rocky 1st trimester, only to have your water break at 2am at 16 weeks.  I could try to explain it, but there really aren’t words.  I can’t explain being on bed rest for 95 days, but I can tell you that despite the horror of it, the fear of losing everything, that it was the easiest part.

I could never really explain the joy of Clark’s birth day.  Smack in the middle of the worst days of my life was the most beautiful day.  Seeing his tiny pink nose, the rest of him obscured in a tight swaddle of blanket was the most beautiful sight I have ever beheld.  I had all the faith in the world on that day.  All of my doubts and fears were dulled by the faith that God had heard the millions of prayers and Clark would have lungs.

There is no possible way I can explain the NICU.  For parents of micro-preemies and very sick babies, it’s not just some inconvenience.  It is their BEST case scenario.  Above everything, we wanted to be in that unit.  Being there meant we still had a baby.  There were moments of sheer terror, unexplainable frustration, tears of fear & of joy and those from being absolutely shell shocked for over 100 days.  I still cry every day for some reason related to Clark’s journey or something to do with premature birth.  Yep, I’m crying right now.

I awoke at 4 this morning to news that another of my pPROM/NICU moms had lost her precious baby after a hard 6 month battle.   I ask that you please pray for Jennifer & Steve Teegarden in the coming days and months.  Baby Natalie was a loved and wanted baby.  She put up an extremely hard and courageous fight and her parents wanted her here to love and raise.  There is nothing more unfair and heartbreaking than a parent losing a child.

May I just say that I was pro-life before all of this.  It would be more accurate to say that I am now anti-death.  As hard as we worked, as I’ve seen others fight for their children, I can’t comprehend how someone could end their child’s life simply because it’s inconvenient for them.  Keep walking for March of Dimes, lighting candles in memory of those lost, but please, never forget the real people behind those causes.

________________________________________________________________

Clark’s surgery is 3 days away.  I am terrified.  You don’t come out of a situation we’ve been in and ever want to walk back in a hospital.  You especially do not want your child going under the knife, being under anesthesia or on a ventilator.  And it’s not just the “I don’t want them to go through this” feeling.  It’s the fear of death, of the worst happening, for everything you’ve fought for & love to be gone in an instant.

We know, all too well, that it can and does happen.  Far too often.

I’m praying for a very uneventful surgery and hospital stay, and after what God has done for us I know, beyond the shadow of a doubt, that he can move mountains. But, I can’t explain how scared I am of something bad happening.  And don’t think for an instant we doubt His power, because we certainly don’t.   Please join us in prayer, specifically on Tuesday (when we meet the surgical team), Wednesday (surgery), and Thursday (the 1st full day of recovery).  Your prayers over the last year have been answered.  There is no limit to what God can do.

May I wrap this up by saying that Clark is 9 months old today.  He has blossomed so much in the past 2 weeks, it’s unreal.  He’s laughing at more people, returning smiles, almost sitting up, rolling everywhere and bouncing like crazy.  The love I have for this sweet boy is fierce and the most powerful feeling I’ve ever had.  I want to thank you for your prayers that made it all possible.

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One Response to “NICU Day 35”

  1. Mom Tjader Says:

    First of all, our deepest condolences to Jennifer & Steve Teegarden on their loss. Our thoughts are with them. Secondly, we will think of Brandy and her son Clark.
    Once again, Aimee, thank you for your updates. We are so excited for Lila to be moved to the ICC. Also, glad to hear that she was so comforted by you when she was crying, although, not surprised at all. We can see how she reacts to your voice and Tyler’s voice, even when she appears to be sound asleep. Those little eye movements and smiles are priceless!
    Love you all.


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