Not so good day

Today was our first full day back home but it wasn't a very good one. Lilly isn't feeling well. I knew she didn't feel good because she wanted me to hold her most of the day. And she had crying spells where she cried with her eyes closed. (That is significant because when she's crying just to complain she cries with her eyes open.) I learned to "vent" (or burp) her stomach with the tube and that seemed to help some. I assume she's just still in recovery and getting the drugs and all out of her system. (We're supposed to call the doctor if she runs a fever or throws up. She's done neither.) Poor baby. I don't like seeing any of my kids sick, but it's the hardest with Lilly. (Honestly she just scares me when she's not feeling well!)

She's sleeping in my lap now though, so here's a run down of her last hospital stay.

Tuesday morning she had a broncoscopy to see if there was anything, besides her tongue, causing her obstructive apnea. Turned out that Lilly's passages were actually quite clear. The pulmonologist was amazed that the results were so much better than she was expecting. Trisomy 18 children have notorious "floppy passages" in their airway. Lilly only had a tiny bit way down in an area that shouldn't interfere with anything. Her adenoids looked good and she had very little sign of reflux. The pulmonologist said Lilly has actually grown some since she last looked at her and that is helping.

Next Lilly had the g-tube put in. That went well. The surgeon said Lilly's stomach looked normal. And that Lilly handled the anesthesia very well. (The anesthesiologist had seemed quite nervous about putting Lilly under.)

Finally Lilly had a hearing test. That wasn't so great as it showed that Lilly has impaired hearing. Apparently her ear canals are so tiny that they couldn't even see her eardrums. We're supposed to get full test results from the audiologist soon. From what I've read, more than half of Trisomy 18 children are hearing impaired. So this isn't anything abnormal really.

Now here's the rest of the story in pictures ...

Lilly recovering from surgery:



Lilly in her room in PICU:

Lilly's new 'do - courtesy of the night nurse who gave her a bath:

Lilly's new g-tube is a type is called a MIC-KEY. She began feeding through it 24 hours after surgery. She was given Pedialyte for 2 hours first. That seemed to bother her stomach a little. Then after that it was just breastmilk and she did great. The feeding tube in the picture can be removed and the g-tube "capped." I hate a hole in Lilly's tummy, but believe it's better for her than the NG tube. Since Lilly is still so little, they put her on continuous feeds. That means we'll still be lugging around the pump on the pole to feed her for awhile yet. (Admittedly disappointing. But we'll keep on practicing the mouth feeding! We'd love for the g-tube to eventually be useless!.)

Lilly felt terrific yesterday and was awake almost the whole day and smiling and talking. We were released from the hospital in the late afternoon.

I'm thankful that the g-tube seems simple for the most part.
Lilly does seem to be very relieved to be rid of the tape on her face. I'm praying Lilly feels better tomorrow. Much much better.

"Glory and honor to God forever and ever. He is the eternal King, the unseen one who never dies; he alone is God. Amen." - I Timothy 1:17