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. 

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Haven had another good day.  It was calm and relaxing…mainly because she only opened her eyes a couple of times for a couple of seconds.  The little thing slept ALL day.  She probably needs her rest, and we’re glad that she can comfortably sleep without the assistance of medications.  However, Mom & Dad had to find an alternate source of entertainment.  So, we did a puzzle.  It was nice, but not nearly as fun as playing with Haven.  Hopefully, she won’t party all night tonight so we can play with her tomorrow.   

Haven had a much better day today.  We are currently in the process of coming completely off of one of her blood pressure medicines (which we had to go WAY up on during yesterday’s events).  We were also able to make some marked postive changes on the ventilator.  She continues to shed fluid (still slowly, but surely).  We had to stop her feedings yesterday with all of the commotion.  We are aiming to start those back up sometime on Thursday.  Hopefully, we won’t have lost any ground with that.  Thank you all for your prayers, love, & support. 

So Haven continues to get rid of unneeded fluid and is looking smaller everyday.  We are very thankful for that.  This morning when we came in, she was bright-eyed and looking all around and was even playful.  It was fun. Read the rest of this entry »

Haven seems to be adapting well to her new room.  She has been comfortable all day and took a few Sunday afternoon naps.  We are just continuing to put as little fluid in her and get as much fluid out of her as possible.  The plan is rather simple, but becomes complex with all of her health issues and needs.  We are thankful that we have a great staff to work with here to keep her on the right track.  She continues to shrink a little more each day and has already gone down two diaper sizes.  We pulled out the old size 2 diapers today and they fit!  Soon she will have her girlish figure back… and hopefully for good!