Bloody g-tube and late night partying

Nights in hospitals seem to drag on forever and are never fun or restful. Of course how can they be with the steady stream of people coming in and out of the room? I know they're doing their job but is something like weighing late at night really that important?!

Last evening Lilly got a fever - 100.2. They said it was probably her body's response to the invasive procedure of the day. They gave Lilly Tylenol and soon the fever was gone.

Lilly remained restless through the evening and it grew worse by bedtime. She seems to really dislike hospitals and the whole routine. All the wires strapped onto her hooking her to monitors, the seemingly constant checking by nurses, being in the crazy bed - I don't blame her. As the night grew later Lilly was moving constantly in the bed and making her "annoyed noise." She finally fell asleep about 3:00 a.m.

But several hours before that, we had a scary experience. A nurse came in a flushed Lilly's g-tube extension and pump with water. A few minutes later Lilly started crying her I'm-in-pain cry. I vented her tube and she quickly calmed. But all this dark brownish red stuff started shooting out through her g-tube. I quickly got the nurses. They had never seen anything like it before and one wailed "Oh can anything else go wrong tonight?!" The doctor quickly called for a stomach x-ray and for the bloody looking stuff to be analyzed. I was so thankful my husband had his work laptop with us and there was wi-fi in the room. I quickly posted what happened on the Trisomy 18 Mommies group on Facebook and had my answer within 30 minutes or so. Several moms said their children had experienced this. That it is called "Mallorie Weiss Syndrome." It's old blood coming out of the stomach. Could be due to any pulling or irritating of the g-tube, lots of tummy time, the balloon g-tube, lots of spitting up .... Once I got these answers it made perfect sense and fit Lilly's situation. What a relief!

Doctors have rounded this morning. They are going to give Lilly an antacid and then preparing our paperwork for release as soon as possible.

The cardiologist making the rounds this morning was Dr. C, the doctor that I saw when I was pregnant with Lilly. He was the cardiologist that assured us, after both pre-natal heart ultrasounds on Lilly, that fixing her VSD would be easy enough. He had a plan for treatment. However, once I finally had an amnio done which confirmed Lilly had Trisomy 18, that was the end of our relationship with Dr. C. In spite of this being a huge, well-known and respected hospital, they don't fix the hearts of babies with Trisomy 18. (They believe it to be "unethical" to put someone through heart surgery if they have a short life expectancy.) So anyway, when I saw Dr. C in the hallway, I felt a mix of emotions. I told my husband I hoped he came in and saw Lilly.

And he did shortly after that. He actually recognized us and I reminded him that he saw us when I was pregnant with Lilly. He quickly glanced at her sleeping in the bed and exclaimed "THIS is the outcome?" I said "YES! She is 14 months old." His face registered a flash of surprise then he quickly finished speaking to us. I was satisfied to hear he knew we were having to go out of state for Lilly's heart surgery. Then he was gone. As my husband put it, Dr. C takes a very "clinical approach." I just hope that he thinks A LOT about Lilly today and that there are some Trisomy 18 children that do live quite awhile!

"This is the day the Lord has made, we will rejoice and be glad." - Psalm 118:24