We started last week with a doctor's appointment that changed our lives, literally. The entire family, all five of us, piled into the car and went to Georgetown University Hospital's Pediatric Apnea Center. The Apnea Center was able to help us with Eleanora's nutrition and growth.Eleanora is 'growth restricted' and needs more calories, but she doesn't have the space in her stomach to accommodate it. The Apnea Center was able to help us by increasing the concentration of calories in each of her feedings. Additionally, Eleanora now receives 'continuous feeds' throughout the night--meaning she receives her milk via a pump that continuously runs for 12 hours. Essentially she never becomes hungry or full, but rather feels content throughout the night. This results in SLEEP (for everyone)!!
Greg and I are now getting sleep in more than 1.5 to 2 hour increments. We had been functioning on so little sleep for so long that we were both becoming unrecognizable. Both of my eyes were swollen and inflamed--so inflamed that my vision was becoming impaired. I was losing my voice as well. The physical and emotional toll have been draining on us. Eleanora's physicians were also concerned for our well-being.
Because Eleanora has been receiving more and more calories she has gained more weight. Now Eleanora weighs 6 lbs 1 oz. Hooray! We have moved out of preemie diapers and into newborn diapers. This is a big success for us.
However. By Thursday morning Eleanora's apnea spells were increasing--both in frequency and length. The spells were predominantly taking place mid-morning...and so mid-morning became bath hour. I was desperate to keep her simulated. Ultimately it won't change her likelihood for survival, but perhaps delay her passing.
Oh that picture is so so sweet!!
ReplyDeleteYou're entire family remains a constant in our thoughts and prayers. Thank you so much for keeping us updated via this blogspot. We love you guys and if there is anything we can do PLEASE do not hesitate to ask.
ReplyDeleteLove.
Mel and Bill
You look fine considering all that you are going through. You never cease to amaze me with your strength and how awesome a mother you are.
ReplyDeleteShe is SO cute!! Hang in there you all. Love, hugs and kisses- Brooke & Kevin
ReplyDeleteShe looks gorgeous. Changing so much! Hopefully the new tube brings everyone a bit of much needed sleep. As always, sending you much love from South of the Border ;) Kelly, Billy, the zoo and baby jesus
ReplyDeleteEleanora such a sweet and gorgeous little baby. I am honored to know her. Joyal you are an amazing mother. I send love and my prayers to your family every day. (And I enjoyed the singing by the girls cha,cha,cha) Best, Denise
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