1 Step Forward, 2 Steps Back

Throughout this journey, there have been many moments where we feel like we’re taking another step forward.  Then we realize that we’re actually stepping back.  This was true with Savannah’s heart cath last week.

Overall, the heart catheterization itself went very well.  There weren’t really any big surprises with regard to her heart or its structure.  Her pressures are good.  Her lungs are protected.  The doctor said that “we have the luxury of time” when it comes to Savannah’s heart repair.  This was a step forward.

But in the same breath, the doctor began to explain the latest development.  In the process of being intubated, the anesthesiologist had trouble passing the tube that she thought she should be using based on her weight.  Eventually, Savannah was successfully intubated using the smallest tube that they had in the cath lab.  Ultimately this means that Savannah’s airway is restricted or partially blocked in some way, shape, or form.  This felt like a step backwards.

Just as we were getting ready to see Savannah in the heart cath recovery room, we were told that Savannah had been placed in the ICU and would be spending the night for observation.  The anesthesiologist was concerned about extubating her due to the airway restriction.  Savannah was given anti inflammatory medicine to prevent her airway from swelling or restricting further.  The doctors wanted to monitor her airway and make sure that she started eating well again.

Thankfully, all turned out well in the end.  By the next morning, we were discharged to go home directly from ICU.  Unfortunately, anytime that Savannah has to be hospitalized, there’s a very good possibility that she’ll be headed directly for ICU.  She’s just such a  complex little kid!  Lori and I get it, but we certainly don’t like it.

Despite our overnight stay in ICU last week, Savannah is doing very well.  By looking at her, you wouldn’t know that there’s anything wrong with her.  Most of the time, she looks and acts like a happy, healthy baby.  She is battling the normal baby issues though.  She’s having some wicked vomiting spells, partially induced by severe acid reflux.  We hold her upright at least 30 minutes after every feeding.  This seems to help.

Just yesterday, we celebrated another milestone.  Savannah passed the 8 pound mark!  Considering that she was 4 lbs, 14 ounces when she was born, this is pretty good growth.  She has also outgrown many of the preemie outfits and preemie diapers too.  Yes, after 10 weeks, she’s finally wearing newborn diapers!

Even with all her health concerns, Savannah is still bringing so much joy to our lives.  We love her so much.  We enjoy each moment so much recognizing that we don’t know what the future holds.  In coming weeks and months, Savannah will be evaluated for her airway restriction.  It could result in anything from doing nothing to doing immediate surgery.  We simply don’t know.  Then with her heart, we have some time.  Some time could be 3 months, 6 months, or 18 months.  Again, we simply don’t know the timeline, but extreme  heart reconstruction surgery is required.

Your thoughts, prayers, volunteer hours, meals, and donations are very much appreciated.  I’d like to say a special thank you to Nicole Whitaker for organizing a Thirty-One party to benefit Savannah’s Heart, and thank you to everyone that placed an order.  Nicole is donating every penny of her commission to Savannah’s Heart, providing hundreds of dollars to help us get Savannah to Boston for her heart repair.

The road ahead will be tedious and frankly, rough.  Thanks to each and every one of you who help us take each of these steps.  May God bless you and may he continue to bless Savannah and our family.

2 comments

  1. Lauren says:

    Here’s to a smoothly paved road and a bright, cheery little girl to ride along it. God bless you and your family. As always, thoughts and prayers are with you.

  2. sammy finnesgard says:

    So glad things are going well! My son had severe reflux among his other issues. Please let me know if you need to know any tips and tricks along with that. I am praying for your sweet savannah!

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