Kaitlyn is recovering at home really well. Her appetite is definitely less than it was before surgery and it has been a challenge to get her to eat. We have been using the feeding tube at night with the pump but have been trying to keep her on bottles during the day for as long as she can tolerate them. It is really important to us to have things be as normal for her for as long as possible since her life will be so short. But since she has shown a decreased interest in her bottles during the day, we are probably going to start adding in some tube feedings during the day too.
This is what the tube looks like without the dressing holding it in place. In about a month or two she will just have a button or portal instead of a tube hanging from her belly.
Her personality and spirit is really great for having had such an invasive surgery recently. She isn't 100% back to her normal self but we are getting there!
I think it has been harder on me emotionally with all of the changes that have had to be made since we've come back from the hospital. I literally walked into her room, opened her top dresser drawer and scooped all of her tops out, mainly onesies, and put them in a box of things that won't fit her anymore. All the cute outfits that she'd been wearing these past few months are in a flash gone and I'm staring at an empty drawer. We now have to shop in the little girls section instead of the toddler section since her belly is so big and the need for us to quickly access to the tube. She's 20 months old and wearing anywhere from 3T to size 6 tops!
With the IV pole and feeding machine in her room (which we hear all night long on the monitor- I think it sounds like an automatic stapler) and the quick disappearance of her clothes, it has made the reality of her disease even more real and difficult to handle.
The set up in her room
Kangaroo Joey Feeding Pump
Chip is much stronger than I am and I give him total credit for keeping me sane (or somewhat sane) during all of this.
Books with Gigi and Cole!
With all this being said, I truly feel blessed that she is doing so well and that we are all at home together again. We have also been overwhelmed with the generosity of our family, friends and people we don't even know who have reached out to us, donated to Kaitlyn's Fund and have been there for us during this time.
Things I won't miss- alarms going off in the middle of the night, the word occlusion, saline flushes and heprin.
ReplyDeleteSoon you won't hear the pump at all
Deanna! You should get her some precious smocked bishop dresses. They are very generous in size around the belly area. Then you could save them in case you have more children or another little girl in the future and pass them down to her. Continue to keep yall in our prayers. So sorry she is running fever and had to have a different tube put in. I am sure there was some discomfort and still is...bless her heart.
ReplyDeleteoh Deanna, what a hard time this must have been. You were so strong for Kaitlyn, she was so happy with all of the love surrounding her
ReplyDelete