Today is the best day Haven has ever had.  For five and a half months our precious Haven Leigh overcame more obstacles than anyone ever deemed possible.  Last night, Haven decided her adventures here on this earth were through and journeyed on to meet God for even greater adventures with Him in eternity.  Her earthly body was not good enough for her anymore, and she is now clothed with a heavenly body that is more glorious than can be imagined.  She had a restful day yesterday, and we spent much time playing with her and enjoying her.  In the evening we gave her a nice bath, put her in new pajamas, tucked her in and put her to bed.  A few minutes later, as we were watching her sleep, she showed us that she was ready to go.  Her heart rate dropped dramatically and the doctors were unable to recover it.  We spent the rest of the evening holding her with no cords or tubes and loving her for the last few minutes of her life on earth.  She was in no pain and quietly drifted away to God.  We would have had it no other way, for all along we wanted it to be her decision when the right time was:  not the doctors’, not ours, but hers.  And so it was.

This precious life has touched us and countless others in powerful ways that, thankfully, give God the ultimate glory for the gift of life He has given freely to us.  We are incredibly thankful to have been able to spend each and every day of her life with her and take care of her the best we knew how.  She had much help through amazing medical professionals, powerful prayers, and love & encouragement from family and friends.  We will miss her terribly and shall never forget her.  We look forward to the day when we shall also meet God and see our little girl again. 

We have also been blessed so much by your love, encouragement, support, and prayers through this journey.  We are eternally grateful to you for your involvement in the life of our little family.  As final arrangements are still being coordinated, we will be sure to inform you all through this site about the details regarding them.  We certainly encourage you to post comments or send emails or other correspondence as you deem appropriate.  Please note that we will no longer be receiving mail sent to the Ronald McDonald House.  The website will remain open as a memorial to the precious life that God granted to us:  a life that has changed our lives forever.

“My flesh and my heart faileth, but God is the strength of my heart and my portion forever.” –  Psalm 73:26  

In Loving Memory of
Haven Leigh Johnson
12/12/06 – 5/22/07

The results from Haven’s kidney scan are just in…

She went downstairs this afternoon to Nuclear Radiology and had a radioactive material injected into her bloodstream.  The machine was then able to take pictures of her body as the material moved through her system.  On the monitor we could see that over time, the material started to collect in her kidneys and after about 40 minutes we could start to see some of it in her bladder.  We didn’t recall what the images looked like a month ago when she had a kidney scan, but the fact that some of the material had already made its way to her bladder via the kidneys seemed like a good thing.  Read the rest of this entry »

Although Haven’s streak of wonderful days has temporarily ended, she is still headed in the right direction.  She has been a little dehydrated the last couple days and we are working to get her fluids balanced.  We are still increasing her feeds a little each day.  We are probably half-way to full feedings and she is loving it.  Hopefully the nutrition will make her stronger and allow her to breathe better on her own.  Read the rest of this entry »

Haven slept very well last night.  She also slept most of the day today.  When she was awake, she seemed to us to be a bit lethargic and tired.  When her daily lab results came back this morning we found that some of her levels were a little off.  One level specifically caught some attention because it seemed so high.  Read the rest of this entry »

Haven has had a good couple of days.  Mommy & Daddy have probably been more busy than Haven has.  We have been meeting with doctors in order to devise a plan for more long-term care for Haven and her complex condition.  We are also seeking other opinions to be able to better clarify what is presumed to be a Mitochondrial Disease (this is a type of metabolic condition which we have been trying to diagnose and find an answer for for some time now).  Read the rest of this entry »

Haven took an afternoon trip downstairs to have her NJ feeding tube placed using realtime x-ray technology to watch the feeding tube move inside of Haven.  We were fortunate enough to be able to be in the room during the procedure.  It was very interesting, and as we heard the doc say, “Well, this is the first time I’ve ever placed an NJ down a person that also has a G-tube site,” we just smiled. Read the rest of this entry »

Haven continues to make baby steps in the right direction.  She had a good day today and enjoyed visiting with grandparents and other relatives for Mother’s Day.  Haven made a beautiful card for her mama with her footprint and handprint.  She also got all dressed up in her “I Love My Mommy” bib and pink bow.  Although she rested a lot today, she was awake enough to stretch and celebrate.  She was even able to come down on her ventilator settings a little bit!  Read the rest of this entry »

I must say that I am very joyful to be celebrating my first Mother’s Day tomorrow.  I have a beautiful baby girl (who is five months old today!) and a wonderful husband who bring me joy every day.  I can’t think of a better team to be part of through the ups and downs of life.  Read the rest of this entry »

Thank you for all the thoughtful comments.  Haven had another great day.  We are looking to re-start feeds tomorrow morning.  We thank God for four great days in a row.  Sorry there isn’t much to report, but the way we see it, the less we have to say probably the better things are going!

Thankfully, there is not much to report today.  Haven is holding steady and doing well with the ventilator and dialysis.  The current plan is to start feeding her again on Saturday once the medication for stomach bleeding has been weaned off.  She was awake a little more today than yesterday, and we got to see her big beautiful eyes. 

Read the rest of this entry »