First night in Cincinnati

The night was very long, as hospital nights are. Annabelle had multiple impressive BMs (sorry for the poop talk - it's our life). We changed sheets and diapers about every two hours and ultimately ended up just leaving Annabelle in a diaper on chucks pads and a blanket. 

We did have an emergency around 130am - Lambie and the pillowcase became victims to the GI blowout disaster. The meltdown that insued was heart breaking. After hand washing in the sink, I decided to make a dash for the nurses station where they put in all connections and found a washing machine and dryer. By 4am the pillowcase and lamb were saved (praise Jesus!)

AK took the first shift of the night until about 1am and then we switched. We were both exhausted but both needed some amount of unbroken sleep. I took the next shift and slept in the bed with Annabelle for the rest of the night - praying to avoid becoming the next poopy victim. 

This is the longest we have ever gone without feeds or nutrients - the last time we avoided feeds, Annabelle lost consciousness at hour 5 and spent the next week in the ICU. She is doing much better now than she was then, but at 22hrs without any feeds, we are really beginning to push our luck. Annabelle is becoming weak and can no longer stand. She cannot sit up too high in the bed - were praying with everything that she makes it to surgery at 12pm. 

She still has not had clear stools however. Until we get her completely cleaned out, we cannot do surgery. The nurses performed another round of rectal irrigations this morning. Annabelle was trembling as she knew what was about to happen. The pleading as she looks deep into my eyes and begs for it all to stop is becoming increasingly harder to stand against. While holding her tightly in position this morning during the procedure, listening to her screams in my ear - it hit me.. As much pain Annabelle is in each and every time she has a BM at home, no matter how soft it is - it's always excruciating. This massive tube they're pushing into her bottom has got to be painful. Her little body pours sweat and chills during the procedure as it takes her breath away from the pain. Fortunately our nurses are very quick for the procedure and it only lasts about 15min. 

Annabelle is so brave but yet so defeated in this battle. She's cried a lot this morning to go home and tell me how much she does not like to see doctors all the time. My heart aches for my baby. My heart crumbles for my husband as I watch his face in horror over what's happening to our daughter. 

Pray for strength today friends. Strength to Annabelle that she remains safe and stable to the OR and makes it the entire surgery without issues. Pray for AK and I as we move to our next appointments this morning to meet the brains behind this disease.