Looking Ahead

 Now faith is the substance of things hoped for, the evidence of things not seen.

Hebrews 11:1

To update you from the last blog post "Roller Coaster"--

• We still don't know the cause of AaronMatthew's fevers or where they came from.  He has had some slight low grade fevers that could be environment related. Such as, the temperature of the room and how he is clothed. But the 103 degree fever is unknown.
• The blood and urine sample's reveled no infections and they were repeated and in the clear.

The fluid around his lungs was due to increased fluid build up because of his heart defect and was taken care of with diuretics. He has had some more fluid build up and increased weight gain due to fluid build up in his body and around his lungs and also with that comes his fast hard breathing that restricts him from taking any fluids orally. The unfortunate thing is that when he breathes too fast, he burns too many calories and cannot gain "healthy weight." The doctors are just trying to find the right amount of diuretics to help with that.

• The ultrasound of his brain was done and did not reveal any abnormalities. Thank God!
• He was not as of this week, presented for open heart surgery as of yet. 

AaronMatthew has gained some "healthy weight." And is now above birth weight.  I realize that this all will more than likely fluctuate until his surgery.

There is now talk, AGAIN, of sending him home next week sometime. The nurses are going to teach my husband and I how to insert a feeding tube into his nostril and down into his stomach, they are going to teach us how to mix his food and how to feed him. He has taken a bottle as tolerated (it's easier for him to suck and doesn't tire him out and burn as many calories.)  I had given up any hope of nursing him until the doctor said that he just wanted him to take a bottle for 10 minutes.  I talked to the nurse practitioner and to the Pediatric Cardiologist about nursing him as tolerated (even though I know it takes more effort for him and could burn more calories) and the consensus was that I could not nurse him more than twice a day and not more than 10 minutes at a time and only as tolerated. I have been pumping my breast milk since his birth and only able to nurse him a few times. He will need to be fed through the feeding tube until his open heart surgery.

There was a consult for an Endocrinologist and some blood taken for AaronMatthew's thyroid. The results were that his LSH levels are high and a test is to be repeated next week. That is indicative of a low (under active) thyroid function (hypothyroidism). Which is common with Down Syndrome. 

All things considered, I believe we are on the up and up for right now and hope things will continue to go as well as they can. 

Thank you in advance for praying for us.