The Good, The Bad, and The Ugly

We had a big trip to Little Rock on Monday to meet with surgeons and OB. Shane and I left Kaitlyn in the care of fabulous friends and headed out on Sunday night. At 8:30 Monday morning we head to Arkansas Children's Hospital and met with the pediatric surgeon who will perform surgery on Avery's diaphragmatic hernia. Actually, we met with his nurse. She was great...probably better to talk with her than the very smart surgeon who does not speak in dumb people terms! No offense surgeons!! Next we were off to the NICU for a tour. This was by far the hardest part of the day. In a way, I am glad that we did it because I think we will be more prepared later but it was extremely difficult. We saw a baby that was on the "ECMO" machine. Quick explanation in dumb people terms: basically, ECMO is a heart/lung bypass machine that does all kinds of fancy things to help babies stabilize prior to surgery. At 12pm we met with the heart surgeon. He was great. Next, was the OB. We've seen him before so that visit was fairly easy. Ok, so around 3:30 we were out the door and on the road for a 3 hour drive back to Fayetteville. It was a super long day and one that we were glad to have conquered!

Ok, so the good news is that as of the ultrasound on Monday, Avery looks about as good as she could. For you CDH followers, her stomach and only a very small portion of the bowel are above the diaphragm. This is good news. For those not so familiar with CDH, the less number of organs above the diaphragm, the better. My amniotic fluid levels look good. We want those levels to stay in the low to mid teens. Anything towards the 20's creates problems. Mine was at 13. The last bit of good news is that we don't have to go back to Little Rock for awhile. My fluid levels can be monitored with my regular OB!

Ok, the bad news is that Avery has a small chance for survival. It is more likely that she will not make it. The combination of her CDH and particular heart defect are devastating to lung development and she will likely have very little lung tissue when she is born.

The ugly news is that Shane and I as well as our family and friends are really going to have to prepare to say goodbye to this little one. There is a chance that her lungs will be strong enough to avoid ECMO and remain only on ventilation. If this is the case, she may be strong enough to get through the hernia repair. She will then have to recover from that and look towards the heart surgery. It just does not look good.

After a long discussion with the heart surgeon, and with his expert opinion in mind, we have decided to not take aggressive measures to prolong Avery's life. Dr. Jaquiss (heart surgeon) believes that if she needs to be on ECMO, she will never get strong enough to do any kind of surgery. So that being said, she will not be placed on ECMO and will have to fight it out on her own. I would imagine that we will know in the first couple of days whether or not she will survive.

I know this all sounds like we have given up and I want to assure you that we have NOT. However, we are being realistic about the options and believe that this is what is best for Avery and our family. Hopefully, she will be strong and ready to fight. We are holding on tightly to those thoughts. Please stick with us through the next couple months. We are so encouraged by all of you!!


  1. I have been waiting for your update. Still praying for you guys. Anything you need please let me know.

  2. we are for you whatever you need.

  3. Hi and congrats on the baby :) I just found your blog through Burt and Christy's. I had a baby with CDH on 2/3/09 and he passed away last week, I know I'm probably the last person you would like to talk to since my baby passed but if you have any questions feel free to contact us. CDH babies are a lot stronger than doctors think. Stay strong and positive :)

    We will keep you in our prayers.

    ~ Carla

  4. Will be keeping Avery in my prayers, that she will be strong and fight!! My heart goes out to you during this very difficult time. It sounds more like her heart and lung volume together will determine how she does once she arrives. Praying for strength for your little girl. My son was an ECMO baby and had his surgery repair while on ECMO. I know doctors who vary on whether to perform surgery on ECMO or wait until they are off. CDH babies do amazing things and are so strong. Stay strong for Avery and that she will be a fighter too!!

    Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 (tmeats@cherubs-cdh.org)

  5. Hi, I am a friend of Candice's and read about little Avery on her blog. I am going to start praying for your little one today.

  6. Hi Carissa,

    My name is Bethany and I met Shane at the mall last night during the non-profit fair. He shared Avery's story with me and I was (and am) so touched. Please, let me know if there is ANYTHING under the sun that I can do for you. I will do anything I can to make this journey easier for you guys!!

    my email: bethanygillham@hotmail.com

    Take care...I'll be praying and I'm here if you need me.


  7. Hey, for some reason I did not get your email. You can re-send it to my hotmail account if you want to. :)

  8. CDH babies are very amazing babys. My son Drake was given a 75% chance of survival but sadly after 7 weeks he chose wings over feet. I have seen babys with a very low percentage of survival, survive. What I am trying to say is that Avery will show you just how strong she is.
    I am praying for your sweet baby.
    Christy Michel

  9. Carissa and Shane,
    I just read about you folks over on Bethany's blog and found my way here. My son was born 2 years ago with right-sided CDH, actually today is his 2nd birthday.
    I just wanted to let you know that you and Avery are in my thoughts and prayers. I will especially pray for peace and wonderful cherished moments during your pregnancy and after Avery's arrival.

  10. Praying for you! Do you mind me sharing the link to your blog?