April 3, 2011

"Mama said there'd be days like this...."

Actually, the doctors told us there’d be days like this.  But that doesn’t mean we liked it any better.   

Last night was a great night.  They were able to get her oxygen levels on the ventilator down to 40% from 70% and her numbers all tolerated that really well.  She rested well and was stable this morning with more good numbers.  Then, between 10AM and 11AM several things happened.  She had vomited some last night so they changed her sheets which is always a little tricky.  They also changed her OG tube (the one that goes down her mouth and into her stomach) to a bigger tube that might be able to suction out her stomach acid better so that vomiting won’t continue.  She was started on a “test dose” of Lasix – the diuretic that’s supposed to pull off some fluids and help her swelling go down.  And she had her first bowel movement (that’s actually a really good thing…. It was one of the “to-do” items before she can begin to be fed through a feeding tube).  After all that, her O2 stats started dropping.  There are two numbers and we’d like to see them above 85, preferably in the mid-90s.  Between 11:00-12:30 they dropped from the mid-90s to 80s and 70s.  Her heart rate also elevated from 120s to 160s.  Long story short, we watched those two O2 numbers continue to drop throughout the afternoon, ending up as low as the 50s and 60s.  There were lots of different theories about what could possibly be causing that including: agitation from all the action in the morning, not enough blood volume from too much diuretic, shifted position of the cannulas (her ECMO catheters), or possible infection.  The doctors and nurses tried several different interventions to little avail and Clara just started getting worse.  Not only were her numbers dropping, but she was starting to look a little gray and just didn’t appear to be feeling very peaceful.  After several hours of guess and check that didn’t work, finally the ECMO Fellow came in on call and adjusted her cannulas which seemed to fix the O2 stat issue as well as decrease her heart rate.  They also called the cardiologist in to do an echocardiogram and determine if there was a heart complication.  The good news about her heart is that the function still appears to be okay.  However, it did appear that her left ventricle was a little underfilled and her pulmonary pressure had really spiked (it was 85 on Friday and 105 today – the ideal goal is to have it between 30-40).  Since we must address the issue of pulmonary hypertension and it doesn’t seem to be getting any better on its own, they started on her nitric oxide through her ventilator.  Nitric oxide should work by relaxing the pulmonary artery and bringing that pressure down.  However, since she has low tidal volumes on the ventilator, it may not work.  We won’t know until the echocardiogram is repeated tomorrow.  If it is not working, they will try an IV medication instead.  The problem with an IV medication is that it will reduce all blood pressure – both her pulmonary pressure and her systemic pressure, and we don’t really want to see her systemic pressure drop. 

The hardest part of today for me was not just all this medical talk or the inability to figure out what was causing the problem or even sitting and watching her numbers continue to drop on the monitor when we knew they needed to go in the other direction.   The hardest part of today was watching my daughter in distress.  This morning when her stats first started to drop she had several silent “cries.”  Her face twisted up just like a screaming baby and her eyes squinted, but no sound came out.  I know that babies are supposed to cry, but they’re supposed to cry because they need a clean diaper or to be held or to be fed.  I had no idea why Clara was crying and there wasn’t anything in the world that I could do to help her.  I wanted more than anything to sweep her up in my arms and hold her and rock her and kiss her head, but of course I couldn’t do that either.  I just had to watch her silently scream and not be able to do anything to fix it.  It was really heartbreaking.  It was the first time since she’s been born that I’ve truly felt like I was not giving her something I was supposed to be able to give her; that I experienced the pain a parent feels when her child suffers.  It’s terrible.  And I couldn’t stop thinking about how God feels that way about us, too.  How much it hurts him to see us suffer.  That even as I was feeling pain watching Clara, God was also feeling pain to watch me.  A parent’s love is truly a powerful thing.  I’ve heard people say that their understanding of “Fatherly love” changes once they become a parent themselves and today I felt that for the first time.  I feel like I love Clara so much, but I know it doesn’t hold a candle to how much God loves us – me and Clara and all the rest of us too.  That’s a lot of love.

As of this evening, Clara is stable again.  Her O2 levels are back where they’re supposed to be in the upper-80s to mid-90s.  Her heart rate is back down to the 120s and she’s pink again.  She’s resting peacefully and not gagging on her tubes or hiccupping or crying.  She even had her eyes open some this evening and was looking around.  We’re thankful to once again be on the other side of a rocky day, but know that today also presented new problems and issues.   Please continue to be in prayer for her.  Pray that her pulmonary hypertension will begin improving and quickly.  Pray that the nitric oxide would work tonight and that the IV medication will not be necessary.  Pray that her O2 stats and heart rate would stay stabilized throughout the night and that she would rest peacefully.  Pray that the cultures that were taken today will reveal that she is infection-free.  Pray that her ECMO cannulas stay in place and do not cause her any more distress.  Pray that she would be able to pull off some of this fluid without it sending all her other systems into shutdown like today.  As always, continue to pray for the large team of doctors and staff who are in charge of her care and who are responsible for making decisions about her treatment.  Pray that all her family, parents and grandparents alike, would get the emotional and physical rest that we need to continue standing by her as she fights.  And please continue to thank and praise our God for his faithfulness to us during this time.

I found myself today thinking about the story of Jesus calming the storm in the sea of Galilee.  (Matthew 8:23-27, Mark 4: 35-40, Luke 8:22-25).  A big storm comes up and the disciples freak out and wake Jesus up and then he rebukes them saying, “You of little faith, why are you so afraid?” and then he calms the storm and the disciples are all amazed and shocked and impressed with his power.  Today I was like one of his disciples – scared and panicked and hating to be out of control.  I want to be reminded that we will continue to go through some storms with Clara and that I must trust the One who can calm them.  It’s not an easy lesson to remember….

Thank you all for continuing on this boat ride with us, for weathering the storms and for praying us through it.  Thank you for sharing our requests with others who are willing to join us in prayer and surround Clara with the Holy Spirit who loves her even more than Robert and I do.  And thank you for loving us, especially on days like this. 


  1. love you all so much chrissy..continuing to pray..

  2. I was praying earlier today for Clara's pulmonary hypertension to be normal and I will continue...love and STRENGTH to you, Robert, and sweet Clara...and her grandparents:)

  3. Robert and Chrissy,
    We are always praying for your strength, faith and peace. God's love is an amazing thing. It is hard to imagine any greater love than a parent's love, but He has it. It hurts him to see your pain, and it pleases him to see your strength and grace.

    Psalm 46 says "God is our refuge and strength an ever-present help in trouble". He will love you and Clara. He has great plans for you all.

    We pray the NG/OG tube keeps her belly in check. No more vomiting. Every little move irritates those cannulas, I remember. YAYY!! for her first bowel movement. Maybe mommy's milk will follow soon. Praying the nitric oxide works and use of IV meds will hold off. Please bring the PPHN down, Lord, we are looking to You now for answers.

    We love you Clara!!
    Nicole, Peyton, Patterson and Presley Jones

  4. Chrissy,
    You are an amazing woman. Thank you for sharing your journey and your faith. You are an inspiration to those of us who read your blog.
    I pray for strength for you and your family. I pray for energy and endurance when you need it and for rest when it is time to rest. I pray for wisdom for your medical team. Mostly I pray for Clara and for her healing.

  5. I requested prayer for Clara in my Sunday School class today. Then a group at church sang a song called "Didn't I Walk on the Water" by Jared & Nick Fields and I immediately thought of you and your family. We are praying & believing in a miracle for Baby Clara.

  6. Your family is a true testament to great faith! We are praying for blessings for you all, and in return you are blessing us! Tell Mama K we miss her!

    Patsy, Georgia, and D.J. Seymour

  7. I have been praying for you and your precious Clara since Chrissy's Aunt Lisa shared with me about her CDH prior to her birth. I find myself checking your blog and twitter several times a day, looking for updates, to know how to pray specifically. Chrssy's post tonight reminded me of the song "Sometimes He Calms the Storm" by Scott Krippayne. My prayer tonight (in addition to asking God to cause each of Clara's levels to be where He knows they need to be) is that in the times that He doesn't immediately calm the storm, that He will calm you, His children.

    Praying and believing with you,
    Wanda Johnson (Aunt Lisa's college roommate)

  8. Sweet Chrissy, the strength and composure required to write such detailed medical updates on Clara' s status, and your willingness to share such honest feelings are evidence of your deep love for Clara and the God who gave her life. Praying for you, Robert, and grandparents as you prop up and pray up one anourinate get through these difficult days and weeks ahead. I remain steadfast in my belief that God is still in the miracle business and I am praying diligently for one for Clara!!

  9. I have been praying for Clara and all of you. I will continue to pray and keep telling everyone else to also!!

  10. We will continue praying for Clara, you and Robert. We also will continue praying for the entire family and medical staff. Linda

  11. You are in our prayers every morning and I continue to pray through out the day.
    Annette and Randy

  12. So thankful for Clara's good night! Still praying all through the day!

  13. I am continuing to pray for Clara and for a good day today. Those days like you described yesterday are tough! You want to hold your baby so bad, to comfort them, to take away everything ... you would gladly lie in their place in an instant ... but you can't. You can just be there. As the mom to a 2 year old survivor however, I can assure you of a couple of things ... first, they don't remember this struggle. Dakota looks at pictures of her as a baby with all the tubes, etc., with interest, but no alarm, no pain ... they are normal to her. But that doesn't mean that the fight doesn't make an impact on them, it does, but I think in a good way. CDH babies are strong babies, with a firey will and at least in the case of my Dakota, a sweetness of spirit and happiness. She is very self sufficient. She is a happy little girl and we are so grateful to have her here that it makes every single thing in life better. Many, many prayers for better days!!!!!!!!!!!!!!!!!!! HUGS!!!!!!!
    Mom to Dakota 12-25-2008
    RCDH/ECMO survivor

  14. Chrissy, Your post this morning took me back...both spiritually and emotionally...to a time when I had to put one of my children in God's hands and admit that there was nothing I could do for her but love her, and keep that conversation with Jesus going 24-7! We feel the presence of the Holy Spirit at those times; it is so comforting, and was for me, life-changing. I recall the peace that came when I realized I had NEVER been in control; what folly to ever think I was! Praying for Clara this weekend, I felt that same peace for Sweet Baby Clara Mae, for you and Robert, and for Clara's four grandparents. Plus, a joyful anticipation of seeing your precious daughter thrive and grow in her walk with our Lord! God's continued Peace and our love to all of you! Karen K.

  15. You amaze me! I've been following your posts and praying for you, Clara and your family. You truly have a gift of words and explaining things in a way that makes us remember what's important in life and who is in control. You are an inspiration! Saying many many more prayers for you all!

  16. Praying for stability and peace for little Clara. As a mother my Heart aches for you.

  17. Chrissy and Robert,

    I saw the link to your blog on facebook and I've been following and praying for all of you since last week. I just hadn't had a chance to post a comment yet. We are saying many prayers for you, for Clara, and for your families, and the doctors and nurses treating her.

    Our son, born Feb 2, 2011, was in the NICU and while our situation pales in comparison to what you are dealing with, I know how hard it is to watch your baby hooked up to all of those things and not be able to fix everything! We often felt like we just wanted to rip everything off of him and run out with him in our arms. I cannot imagine how you are feeling, but hope and pray that God continues to give all of you strength, courage, and comforting moments everyday and that Clara continues to progress.

    We'll continue to pray and praise God for Clara's life!

    Emily (Conrad) Beaver

  18. We are praying for physical healing and emotional peace for all of you.
    Mary Sessions
    Grandmother of LCDH survivor Jim Beau

  19. I cry with you, sweet Chrissy. I can't imagine your anguish .... but ALL of us praying TOGETHER, will see a miracle through. Keep that beautiful faith alive and never, ever give up! ALL of you are loved more than you really know. Hold on.

  20. Pray on!!! Our gracious God will get little Clara throgh. She is fearfully and wonderfully made because the Lord says it. We will definatly see a miracle throgh Clara. Never give up and stay strong in your faith.
    Love and Blessings, The Welsh Family


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