Giving Thanks

We have MUCH to be thankful for:

We are incredibly blessed to have the toughest 5-week-old to ever grace this planet, Cully Charles.

We are blessed to have an incredible 18-month-old who continues to amaze us each and every day, Tillie Ann. 

We have a support network of family and friends that are second to none; a network, that has made this process bearable by providing love, support, food and just about everything else we could possibly need, You.

And, we have each other. 

Since our last post Cully has strung together eight consecutive days of relative stability.  They have continued to wean his blood pressure medications, and by and large his pressures have remained well within acceptable ranges.  Over the holiday weekend Cully began receiving breast milk via a feeding tube! Cully’s thanksgiving meal. And, he has tolerated the feedings better than any of us has expected. 

Swelling, or edema, and kidney function continue to be the main concerns, neither is considered life threatening at this point, nor is there an expectation of any long term effects.  He has not made urine constantly since being on ECMO and is continuing PD (perinatal dialyses) treatment.  PD treatments do not completely replace kidney function and are not as exact the dialyses provided by ECMO.  This has meant Cully has seen fluctuations in acids cleared from the blood stream by the kidneys and his overall fluid level. 

Changes made to the PD treatments have stabilized and lowered the acid levels, but finding the right balance of fluid off each day has been, and will continue to be, an ongoing battle.  When too much fluid comes off, the volume of fluid in his circulatory system decreases resulting in lower blood pressures.  When his blood pressures decrease due to low volume, the doctors give it back in the form of red blood cells, platelets or saline and his blood pressure quickly returns to acceptable levels.  This is quite the roller coaster, but a necessary evil, as getting fluid off his body has been extremely important in order to close his chest, which has been open since November 15^th when he went on ECMO.

Which brings us to today’s big news...Cully’s chest is closed!  He held is blood pressure throughout the procedure and is back in his room resting peacefully.

Closing Cully's chest is a significant step in his recovery.  Closure reduces his risk of infection and returns his body to a more natural state.  However, it brings with it some risks: first, is the likelihood of swelling; and second, is the pressure that swelling can put on his organs, particularly his lungs. 

As always thank you all for your thoughts and prayers.  Your support means the world to us as we forge through this tumultuous process.

Love, Carl, Jessica, Tillie and Cully