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A day in the life of Lizzie…

A day in the life of Lizzie…

It has recently (and not so recently) been brought to my attention that I am entirely too far behind on giving a Lizzie update.  This might sound nuts but I have actually written several updates on Lizzie over the past couple months.  Only they’re in my head. Like that weird thing when you answer a text in your head and convince yourself you responded.   If you haven’t heard from me chances are I did respond.  Sort of, at least I thought I did.  Enough about me, it has already been established I’m crazy.

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So, Miss Lizzie… When she left the hospital the end of January we came home to a bedroom that was basically converted into a hospital room, only pink.  She had to wear her bipap mask for at least 16 hours a day and was on 2-3 liters of oxygen 24 hours a day.  She also vomited on average 2-3 times a day. Lizzie lost all ability (what little she had) to eat or drink anything by mouth.  The combination of multiple breathing tubes and various feeding tubes and drains being forced in and out of her tiny throat really created havoc over the 126 days she spent in the hospital. Prior to Lizzie’s first surgery she was only taking food via a bottle with a hole cut in the nipple the size of a pencil eraser, she never learned how to suckle and always had extreme oral aversions.  She choked and vomited every time we tried to feed her solids.  The cardiologist just told us to fatten her up and worry about teaching her to eat postop, so we continued the bottle feeds.  After discharge Lizzie would no longer take a bottle, she relied entirely on her g-tube for nourishment. She also lost her voice, though she only said 3 or 4 words before the hospitalization. In addition to it all, Lizzie came home with an extreme addiction to methadone and Ativan, she was slowly weaned and finally came off in April. ***Let me insert here so you all feel bad for me, at this point I went on to finish writing the post, 5-6 more paragraphs of detail that I stayed up until 12:30 working on.  But when I went to publish the next morning it was nowhere to be found.  I really really really wish that didn’t happen. I mourned the loss over the past week while praying it could be recovered, but it is gone.  Rather than leave another Lizzie update untold, I am doing it all over again.  It may take a while and it may not be as entertaining.  You may now continue…***   Anyway, we were able to get in-home nursing care 5-6 days a week. I opted for day time nursing so I could have more time to be momma to the boys.  I covered the night shift.   Words cannot express how this helped our transition.  Ms. Audrey whooped me (and the boys) into shape.  I am a nurse but this home health business is an entirely different ball of wax.

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We spent the rest of the winter and spring doing all we could to keep Lizzie out of the hospital while dealing with pneumonias, vomiting, colds, ear infection, diaper rash, withdrawals, doctor appointments, and lots of therapy.  The first week of June we said goodbye to all the support we grew to love and fully depend on and followed the Air Force’s orders to Washington DC.  We are finally settled in and Lizzie has won over all her new caregivers.  Her new nurse, Ms. Abby, is fantastic and Lizzie has really bonded well with her.  We are still waiting on speech and occupational therapy, the delay in this service is absolutely ridiculous.  Just thinking about it makes my blood pressure skyrocket so I’ll save that story for another day.

 

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From a pulmonary standpoint Lizzie is doing so much better.  She has come down to 0.5-1 liter of O2 and can go about an hour off without an immediate drop in her saturation level.  She is now only sleeping with the bipap mask and we have been cleared to tinker with letting her nap without it.  There is talk of another bronchoscopy to see how her collapsed left airway has improved.  I am willing to wager there has been some major healing in this area!  We are praying for a calm and uneventful flu and cold season, any illnesses could derail her progress.  Now onto her heart.  After discharge everything looked perfect, well, as perfect as Lizzie’s heart can look.  The cardiologists have since discovered increasing pressures in her right ventricle.  Meaning there is premature wear and tear in or around the conduit and valves placed in her heart.  This sort of thing is typical around the 4-5 year post-op mark, not the 5 months mark…  At this point there really isn’t much to do other than watch it closely.  The numbers are creeping up and that is not a good thing, but it is a slow creep at least.  It is impossible to not think about the “what ifs”, but Psalm 112:7 reminds me to have no fear of bad news; to keep my heart steadfast, and to trust in the LORD.  So I’ll cling to that rather than what might happen tomorrow.

SEF_088Lizzie is still not eating anything by mouth other than water.  She continues to vomit at least once a day, often times more. She is not quite on the growth charts but they are still worried she may be gaining too much too quickly, it is such a fine balance of calories vs activity vs keeping it all in. We are praying for her to make big strides in oral feeding.  Her developmental specialists have ran several tests trying to explain her size, delays, cardiac & lung issues, and other symptoms.  So far everything has come back “normal”.  I guess it is good to get as much information as possible, but we are ok with accepting her without any further explanation, too.

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She is still not talking, other that the occasional “momma” and “uh-oh” and her favorite “Da-da”.  She yells his name.  Sister is head over heels in love with her daddy.  In spite of her silence, Lizzie has no problem letting us know what she wants or doesn’t like.  She pushes her brothers around, they don’t seem to mind. She adores each of them and they her.  She wags her finger “no-no” to anyone being naughty, including herself.  It’s hilarious.  She has so much personality.  She loves being outside but hates grass.  She never played with toys before but is starting to have some favorites other than plastic wrappers.  She will always have a passion for rubber gloves.  She now rocks and loves on her little baby, but only the bald baby.  She throws anything with hair across the room.  Poor Rapunzel.  She loves accessories and looking pretty but is not a fan of shoes, she tosses them the first chance she gets.  She loves music and movies.  Her favorites are Frozen, Cinderella, Mary Poppins, Tangled, and Snow White. She makes me sing and will move her mouth to all the songs.  She likes dancing and swinging and swimming and going for walks.  Her laughter is mesmerizing.  Lizzie enjoys life.  She is an amazing little miracle and watching her grow is one of the biggest blessings of our lives.

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1 Comment

  1. Victoria Owens

    Thank you for this. We have been patiently waiting, all the while imagining how much ‘free’ time you have on your hands. We love Lizzie. She has come such a long way by the Grace of God. You and your family have endured, kept the faith and drawn strength from our heavenly Father through this whole time. We continue to keep Lizzie and ya’ll in our prayers. May the Grace, Love, Healing and Joy of the Lord continue to be upon your family.

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