Wednesday, February 8, 2012

In a Valley Today

There are peaks and valleys with CDH babies and the last couple of days have felt a bit like a valley. Don't get me wrong, we are grateful for sooooo many things such as:

  • Killian is being weened down to 50% on the ventilator! 
  • There have been no visible seizures for the last couple of days.
  • We continue to be amazed and blessed by the kindness of our friends, family and complete strangers who have fallen in love with Baby K like us :)
  • He continues to tolerate milk through the feeding tube. 
  • Other babies that we fallen in love with in the hospital with Killian continue to get better! Yay Rylen!!!
The valley part includes the following:
  • Killian continues to have random "fits" that cause his numbers to drop. We don't know what could be causing them. 
  • We're still recouping from the news about there being no change in his pulmonary hypertension. For me personally, that's weighing heavy on my heart. 
  • The doctors have hooked him back up to EEG to monitor his monitor his brain activity/keep an eye out for more seizures.
"You talking to me?"

  • The doctors are concerned that Killian may have "drop foot." Forgive me if I get the details wrong, but the way I understand it, babies are supposed to have the following:
    • Babinski reflex - When the sole of the foot is firmly stroked, the big toe bends back toward the top of the foot and the other toes fan out. This is a normal reflex up to about 2 years of age.
  • Killian isn't doing this the way they'd like, so they've put up a blanked wall at his feet to give him something to push on. Also some physical therapists will be coming in to weigh in on it. I think I've found another CDH baby's story about dealing with this here, but I'm not sure. 
All bundled up with his EEG hat and foot blanket wall.

So prayer warriors and positive thought givers, here's your homework for the night:
  • Strong heart for Killian. We desperately need his pulmonary hypertension to go away.
  • ALL blood clots, especially the ones in his brain, to go away
  • No seizures!!!
  • No more "fits" or irritability.
  • Pray for his neurological well being...restoration for any damaged brain cells. Speak life to all damaged organs. We want Killian to not only have life, but have it abundantly!!!
  • Lindsey has been feeling a little under the weather, so please pray for her. This girl has run herself ragged spending every moment she can with Killian and as much as we tell her to take care of herself, it's all catching up to her (even the pressures of just life in general).
  • For Grandpa Garry and Ker-Bear who are driving from Neodesha, KS back to Nashville tomorrow because two weeks without seeing Killian is two weeks too long!! Safe travels dad!! :) 
  • The doctors and nurses who continue to dance the dance of perfect medication dosages, placement of his body, level on his vent...these men and women have a lot of responsibility and we want to continue to lift them up in prayer! 
We're hoping for a peak tomorrow! I'm loving this scripture today:

Zephaniah 3:17 The LORD your God is in your midst, a mighty one who will save; he will 

rejoice over you with gladness; he will quiet you by his love; he will exult over you with 

loud singing.

Love you all! 

xoxoxo Aunt Layna, 



  1. Prayers from Pennsylvania for Killian and his family.
    Ramsey LCDH survivor

  2. We are still praying for him. Our Sofia's pulmonary hypertension did not get resolved until she was 2 years old. They sent her home at 6 months old with medicines to control it and oxygen through a nasal cannula. She was very sick almost like Killian. One thing we learned, is don't give up faith ever. God is capable of huge miracles with babies.

  3. Many, many prayers & positive vibes. There is such a delicate balance for these little ones and finding it can take many peaks & valleys.

    Keep faith and keep on keeping on.

    Prayers for Killian's Mom as she is truly inspiring.


  4. Praying for sweet baby Killian. Keep fighting, little buddy! We just began our CHD journey--baby Bee was diagnosed a week ago. She's due in June.