May 13, 2011

Guest Post from Bigdaddy

First of all, sorry there was no blog update last night.  This time it's not my fault - Blogger was down.  This is the guest post that would have been last night's post.  It's written by Clara's maternal grandfather "Bigdaddy."  If you're lucky, I may write another one tonight.  And then again, I might not.  Enjoy!

Thursday, May 12, 2011

I am writing this morning from the Hampton Inn in beautiful Sapphire Valley (not to be confused with the Historic High High Hampton Inn in Cashiers (four miles away).  It is hard this morning to have missed my quiet hour with Clara Mae.  The routine of going to the hospital after working out and holding her for an hour has been very therapeutic for me.

I have been amazed at how incredibly strong Chrissy and Robert have been.  As difficult as this road has been, they have been rocks.  Especially, I am proud of Chrissy.  She goes to the hospital every morning to sit in on rounds and ask questions.  Sometimes, she has to hold back because the doctors are asking questions of the medical students and residents (so they can learn) and Chrissy is answering before they have a chance.  She has been the most agressive, outspoken advocate for Clara Mae.  (She should have gone to Law School).  Some residents have told her they are going to the blog to get the medical update instead of reading the chart.  Dr. Turner has told her she can pass the first year of medical school and begin with year two.  Anyway,  Chrissy has always had a complete understanding of the medical issues combined with a strong faith and optimistic view of how this would end.  While we have all done pretty well in handling the stress of this ride, Chrissy is the one that we can count on to be cautiously positive but realistic.

Yesterday [Wednesday] was probably a pretty good day for Clara Mae.  But, for us, it was a little cold water in the face reality check.  When Clara Mae came off of ECMO in mid April, one doctor cassually mentioned that Clara Mae might go home in four weeks or so.  Several nurses and respiratory therapists have made positive comments about when she would go home.  Being a gracious and patient family, we set a goal of June 1 (we really like goals that need to be met).  We thought June 1 would give the doctors and nurses 5-6 weeks instead of four to get Clara Mae ready to come home.

In rounds yesterday, Chrissy asked if Clara Mae would be home by June 1 and they laughed at her.  It was sobering. Chrissy was told that Clara Mae would remain at the hospital "a long time."  That is not what we wanted to hear.  She was also told that Clara Mae was still very sick. (I swear she doesn't seem that sick when I am holding her).

We debate about what is our biggest hurdle to overcome and it changes daily.  It seems there are three big issues to get us to Intermediate Care and then home:

1.  Get Clara Mae off morphine.  Chrissy was told yesterday that Clara Mae was still on a high dose.  We thought we were about done because it seems we have weaning off morphine for weeks.  But, at the current rate of weaning, we are ten days away; and, that assumes daily weanings which are not happening now because of the morphine withdrawal.  My best guess is that we are probably 2-3 weeks away from solving this issue.

2.  Clara Mae has to be weaned off of oxygen.  She was at 1.5 liters and 30% yesterday.  We are making progress here.  She needs to get below 1 liter to go to Intermediate care.  While many of these babies go home on oxygen, we would prefer not to. If they go home on oxygen it is usually at volumes of 200-250 ml.

3.  Clara Mae needs to learn to eat.  This has been particularly frustrating for Chrissy, who as a mother wants to feel that bond.  This one will just take time and practice.  One day, she'll just figure it out.  But, we want very badly for that to happen.  Again, some babies can go home with a stomach tube ( a "G" tube surgically placed, not the NG tube in her nose that she currently has). We obviously prefer to avoid this; but, we'll do what we must.

So, yesterday was a tough reminder that we are still running a marathon.  Maybe we thought we were sprinting to the finish line.  Obviously, we have some miles to go.  It was a little bit of a down day.  But, I know my Chrissy will bounce back today with energy and strength and the stamina it takes to get Clara Mae home in an appropriate time and to get her home healthy.

I love you Chrissy (and, you too, Robert).

Bigdaddy

6 comments:

  1. Well, then, we have to just KEEP ON PRAYING! Without ceasing! And we will! You can be sure of that! By the way, I can see why you all are proud of Chrissy and Robert! What amazing parents, advocates and faithful followers of Christ they are! And we all love that little Clara! Blessings to you all!

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  2. Prayers for your family! We relate, and know the different conflicting timelines that are put in there. It is so great that mom can be there and have such a clear understanding of what is going on. I didn't have that luxury when my CHERUB was born, and did a lot of learning after the fact. Maybe better for me than knowing as it happened. Look at how far Clara has come! Praises!

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  3. Continuing to pray for continued success with weaning of O2 and pain medications and increased learning to seek nourishment.

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  4. I have not commented before but I have been following Clara's story since my cousin, Wendi Galinski, posted the prayer request on Facebook. I will continue to keep you all in my prayers. In following the blog, I have wondered if you have tried Kangaroo Care (skin to skin contact) with Clara. It's mainly used with premature babies but has been shown to have great results for regulating breathing, oxygen saturation, heart rate, feeding and other things. You may have considered this already and it may not have the same effect with CDH babies. If you want to read more on it, try http://my.clevelandclinic.org/healthy_living/infant_care/hic_kangaroo_care.aspx or http://www.marchofdimes.com/baby/inthenicu_kangaroocare.html.

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  5. I'm sorry it was a down day. It is really dissapointing to have one thing in your head and it be the wrong thing. I wouldn't lose hope though, you never know what could happen! I completely understand though because when we first got to the hospital we were told Grace would be there for about a month. HA! Boy were we dissapointed when we learned the truth! Hang in there, I know it's hard but soon you will be updating this blog at home with Clara!

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  6. Laura and Frank McNairMay 14, 2011 at 7:56 AM

    Bigdaddy Rocks!

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