Friday, April 13, 2012

Reality Check

Back to the perinatologist today. Parker did great-- 8/8 on biophysical #2 (non-stress test Tuesday for the additional 2 points). Pretty quick and easy, but he didn't cooperate much for pictures. Poor booger is probably tired of posing for the camera!

They re-examined his abdomen after last week's unidentified shadowing. There still doesn't appear to be any liver in the chest cavity, and the mysterious area from last week might actually be lung tissue. We will happily take lung tissue over misplaced liver any day!!

There was more stomach up today than there has been at any past appointment. It's a fluid organ and can shift up and down pretty easily, but I still felt disheartened. This has been a rough month for some mommy friends (real life and Internet style), and it's weighing heavily on my mind.

Two mommy friends lost babies, one to CDH related complications and one not.

Two CDH babies (Jude and Killian) have been in the NICU for four months. They have both had tremendous highs and disheartening lows. Their little bodies are tired, and their families are exhausted. They have been told their fights will continue for weeks to come.

The first of my co-expectant mommies, Rhonda, had baby Esther yesterday. They were told the night before induction not to expect Esther to make it more than a few hours. She has defied all odds, is here and gorgeous and fighting so hard. She's on ECMO and has a tremendous battle in front of her.

Since we learned about Parker's diagnosis, I pretty much made it a policy to focus on survivor stories. Here and there I've come across some non-survivor stories, and as heartbreaking as they are, it's good for me. I've gotten support from mommies who watched their little ones beat this thing, and support from mommies who had to let their little ones go.

Both paths used to seem a lifetime away. Parker has been happily cooking for 33 weeks, and so long as he is with me he is warm, safe, and healthy. Unfortunately, warm-safe-happy time is going to run out in a month, and we will be in for the fight of our lives. For some reason, this all piled up this particular week and hearing, "There is significantly more stomach up than usual" today has put me in a funk.

Time to readjust our focus-
Positives. The liver is still down. He's continuing to perform well on his biophysicals. He still has 5 weeks to get ready to fight for his life. I have every confidence in our medical team (all 40 of them). We continue to be amazed by the love and support of our family and friends and complete strangers. We have been offered every type of help imaginable.

Time to go before God with our prayers-
Peace and comfort for mommies who said goodbye to their little ones. Continued strength and perseverance for the babies currently fighting in NICUs. Guidance for our medical team. Praises for Parker's "favorable outcome" predictions thus far. Prayers for Parker's stomach to get out of the way already. Courage for Mike and I.

Boo to Debbie Downer days. They are pretty few and far between, and for that I am grateful. I have to allow them to happen occasionally, or else I'll go bonkers. I expect more of them to come in the month leading to Parker's birth- I am tired, I am grouchy, I am anxious. Time to go re-read my Between the Hedges post and to count my blessings.
"Name them one by one, and it will surprise you what the Lord hath done."


  1. Dear Abby, you are far more courageous than I was. I could not read any blogs when I was pregnant and while Samuel was in ICU. One of my friends would screen blogs for me to make sure they were survivor stories, but then one of the "survivor" babies died. I found it so heart-crushing that I just tucked inside our own journey.

    It was not until after I knew he was okay that I was able to lift my head and hear the stories of other CDH babies. And now I read them and I cheer and my heart breaks but I love that little community of strong babies and brave, brave parents - like you and yours.

    This to say, it's okay to protect your own heart, mama. There will be time for loving up others once Parker is safe home in your arms.

    Many prayers for our Jude and Killian and Esther and Lucy. Extra blessings for you and Leslie too.

    Samuel's mama

  2. Sometimes the anticipation of the unknown is worse than experiencing it. You will have your "Debbie Downer" days, and that's OK, but you will also find you have more strength than you ever expected. You are part of our virtual family and we will be here for you and praying every step of the way; not just for Parker, but for your entire family!

  3. I feel the same way re: reality about to smack me in the head. As the time ticks down and the appointments pile up it's getting really *real*. I don't know of a way to prepare for what's to come except to read other blogs. One of the perinatologists I saw seemed very shocked when I told him the blogs were much better for my mental state than reading research and statistics. I believe Parker is going to do great, especially if he has even half the spunk of his momma :)
    Prayers for your whole family,

  4. Boo to CDH, ECMO, PH ;( Boo to CO2, O2, HR , RR monitors ;( I hate that any expectant mom has to hear these acronyms and abbreviations....But YEAH for modern medicine to give these kids a fighting chance and YEAH for the hopes and dreams you have for Parker.

    I stumbled upon your blog the day you posted abt Disneyland and got super emotional and wanted to share a snippet of our story, since we too, are fellow Disney lovers :). To make a long story short, during the first few weeks of our diagnosis over three years ago, one specific discussion lead to us praying that there would someday be a Disney trip for our family of FOUR. We had just returned from the happiest place on Earth with me being barely 3 months along w our little one and our 2 year old... Those acronyms were NOT in our vocabulary then.... But after a long hard road and lots of those acronyms (and many more) were part our everyday vocabulary, we finally MADE it back to Main Street w both our kids a few months ago and had the time of our lives! We ALL ate overpriced food, waited in crazy long lines, laughed and smiled till we were exhausted, and stayed up past all our bedtimes, as a healthy family of four (oh and yes, we used abt a GALLON of PURELL in a week too ;)

    So, have reality checks, but stay hopeful!!! Prayers for Parker and all of your family during this time...

  5. I am thinking about you and glad that your little one seems to be doing well so far! Prayers for the rest of your pregnancy and upcoming birth!

  6. I just came across your blog through another follower. My son, Jacob, is a CDH survivor born last October and doing well. We have had quite a journey but have managed through nonetheless. It was as 33 weeks that I found out about Jacob's hernia. I have always been thankful that I didn't have a lot of time to stew over everything too much. I tried to stay away from non-survivor stories as well, but just two days before Jacob was born I came across the most disturbing blog of baby that didn't make it. I was very, very upset because it was a blog of someone in the CDH community that "friended" me on Facebook. I couldn't understand why she would want to share her horrific story with me days before I was to have my baby. I didn't expect that and it made me regret being part of the CDH community to some extent. I would like to share my blog as a realistic yet hopeful journey. Jacob is doing great now even though we are still dealing with a few hiccups now and again.

    Prayers for you and your littlest one!

    Jacob's Mommy