Galina/Halia is 9 months and on February 18, Nicklaus Children’s Hospital has a wing dedication. First lady Melania Trump enjoys visiting children’s hospitals on trips with the President. Halia is one of the 3 children chosen for the President’s wife to visit with if it’s fine with us.  I’m thinking this is pretty cool as long as Galina/Halia is well enough.  Galina/Halia hadn’t been doing well the couple days before so it would be how she felt. Jack Nicklaus was there with his wife too.  I wish I had taken the day off.  This was definitely a once in a lifetime experience. I would have liked to ask Mrs. Trump…

They raised her pacemaker back up to 80.  She wasn’t feeding well and they weren’t sure if it was the pacemaker, teething or something internal.  We’ll see what happens.  They drained the pacemaker side, it wasn’t much fluid that came out and it was purple and red the night before.  She is sedated to keep her comfortable.  Now she has a wound vac on her pacemaker side.  The one that she had on her chest is out and now she has some dressing on for healing.  They will give her pain relief medication for now as she might be uncomfortable today and maybe tomorrow.  She will be on 80 for…

February 7, Galina/Halia is doing well and pacemaker is pacing only at 70.  She’s eating and playing and that’s a good sign as they lower it more.  We got Galina/Halia a new book and a Lamaze dragon.  She’s thrilled with the wings flapping, but not strong enough to pull cord yet.  So glad she’s playing and happy. The cardiac care unit staff are amazing. We’re not supposed to be here this long, but because of Galina/Halia’s extended stay we become part of their work family. We know the language for Galina as doctors and nurses handle her. We change her diapers, bathe her, and help in every other possible way.…

February 3, Halia is growing and needs a new swing.  She might not be on the growth chart for weight, but she is getting long.  So nice to see her cheeks!  I still am not comfortable with the feeding. Thrush in her mouth, her bottom, medicine for stomach, teething, antibiotics, heart medicine and more medicine just make feeding so hard for her. She has an oral aversion poor darling. They are always forcing more food on her. She throws up too often. She’s growing on the inside and that’s making the doctors happy. Her swing is a nice change from being in the bed and sometimes they will put the…

January 27, Galina/Halia has tested positive for the infection where the pacemaker and battery are located.  Currently, the direction they want to go is to lower her pacemaker gradually over the next 10 days to the heart rate she puts out on her own unassisted with the pacing device.  They hope her heart expands and can support her independently since she is so young and a baby doesn’t need the higher heart rate that a young child would need. If she does fine they will then take the pacemaker and all its hardware out. They believe the infection has attached itself to the foreign object “pacemaker and its hardware” in her…

January 25, Galina/Halia has had a tough 4 days with many tests being done with her.  Today she had to stop eating at 7 as the wound vac should be placed this morning sometime around 10:30.  She had low hemoglobin level, too white, and so the doctors decided to give a blood transfusion.  Galina/Halia’s body was weak and she was not interested in playing or eating.  During the time of the wound vac installation the doctor saw fluid accumulating in her pacemaker area, so they had to drain it out and send the cultures away to the lab.  They gave her Morphine to help sleep. They noticed the upper side…

8 months old, January 22, we went in to see Dr. Onal and the infectious disease doctor to check on Galina/Halia.  Galina/Halia was a little cranky and we needed to make sure all is ok.  I was able to get her to smile at the doctor’s office, but poor thing wasn’t feeling as great. It’s so hard to figure babies out and our check list is longer than most. With the utmost importance, we are headed to Miami to run some tests they deemed necessary.  It’s been so wonderful to bathe her, pat her dry, change her diapers, play with her, hold her, talk with her, watch her sleep in…

It feels like we are getting used to being a family in Naples again. Afternoon walks are the norm and we bundle our little angel up. It’s one of the many times during the day we look forward to spending time together and getting out to see all of nature and get some fresh air. We went with Galina/Halia to my pro league match and everyone that wanted to and noticed her and Nastya got to see her.  I was happy to have her there.  It was a little chilly and we were still protective of visitors and their germs, but it was fine since no one was going to…

January 5, we get to take her to “Disney” or rather home!  So wonderful to have her at home.  She can play on the floor mat with all the free space the hospital crib denies and maybe now do tummy time when appropriate 😊.  It’s a beautiful time of year too! We can walk and listen to disney orchestra or Beethoven, Brahms etc. Strolling can be done almost all day long and we can’t wait for Galina/Halia to see something outside of the walls of the hospital.  Chase sent me pictures of his trip up to Memphis with his friends. I got him for Christmas 4 nice seats to the…