Vivian holding Baby Jesus and watching Clifford on TV (sort of)
I'm not sure why some days are more exhausting than others.
Vivian had a good day today. The doctors have eliminated all sedatives during the day in an attempt to reestablish Vivian's day and night cycles (which have always been a bit blurred, even before this hospital stay). We were able to get Vivian into her stroller several times. We walked her around the PICU block on each occasion, and on the last Vivian sat in her stroller afterward for an extended period. Vivian took quite a few steps; she was completely supported by Robert and the physical therapist, but she was bearing her full weight on her legs. I fed Vivian half of a jar of baby applesauce, and she ate that very readily.
When Vivian was in her bed, however, there was a lot of kicking and complaining. I think that Vivian is generally uncomfortable, so she asks to have her socks removed, then decides that didn't help and requests to have them put back on (same with being covered with a blanket, having someone hold her hand, etc.). Vivian hates the restraints on her hands and keeps asking us to "take off those rabbits" (I have absolutely no idea why she calls them that). Most concerning to me today was Vivian's inability to look directly at anything and focus. Vivian is able to identify things that I hold up (a stuffed Rudolph, her baby doll Sarah, etc.) so I know that she can see, she just looks past things most of the time. In general Vivian is very easily overstimulated by all of her senses (keeps saying noises hurt her ears, can't abide for even a band-aid to be on her skin, etc.) so perhaps the lack of eye contact relates to that; I don't know.
Robert and I were discouraged when Dr. Fanning told us today that it would likely be the end of the week or the weekend before Vivian is discharged from the hospital. I know that being home will have an entirely new set of challenges, but I am so weary of her being in that PICU.
I'm sorry to be so whiny tonight. I think I'm just tired.
Please pray that Vivian would begin to make eye contact and look at things directly. Pray that Vivian continues to gain strength in her legs as we get her up and walking again. Pray that we could expand the types and amounts of food that Vivian is able to receive orally. Pray that Vivian ignores the belt protecting the g-button and port on her abdomen so that those are able to stay in place. Praise God that Vivian's latest screen for the C Diff gastrointestinal infection was negative. Praise Him for the strides that we are seeing in Vivian every day. Ask Him to provide me with a new burst of energy, hope and strength (Robert, predictably, is still holding up well).
Thank you for reading these updates and faithfully praying for Vivian. Your thoughts and prayers have been much needed and appreciated.
"I will praise the Lord, who counsels me; even at night my heart instructs me. I have set the Lord always before me. Because He is at my right hand, I will not be shaken." Psalm 16:7-8
Married for 27 years to Robert, three kids: Will (23), Vivian (20) and Dots (17) ~~~~
Majored in mathematics at SMU, taught elementary school for six years before Will was born, currently tutoring math ~~~~
Things I enjoy: playing duplicate bridge, working NY Times crossword puzzles, reading good books, entertaining, visiting with friends, planning trips, traveling, playing board games, spending time with family, cooking, keeping up with old friends ~~~ happy to correspond with other parents about raising a child with special needs
I unintentionally contaminated all of the pictures on my blog when I changed my privacy settings on Flickr. I am working backwards to correct them all, but it is quite a tedious procedure! If you encounter a post with error messages from Flickr where the pictures should be, then I haven't gotten to that post yet. Please let me know and I will update it immediately. Thanks for your patience!