Betty is sporting her Wonder Women shirt today. Tomorrow we head over to Seattle Children’s for her procedure on
The Dr’s will be doing a cath through her leg to go up into her heart to take a biopsy to check for rejection. At the same time they will also be injecting a dye into her heart to check her arteries and veins. One of the side effects of heart transplant is the arteries and veins can start to swell shut from rejection even if rejection is minor. They will also be taking blood samples directly from her heart for studies (Betty is part of a group of infants that have no diagnosis for their CHD).
Betty is full on crawling and pulling herself up on everything. If she can get into something and make a mess of it she will . Her favorite show to watch while her feeding is happening is Hey Bear or Super Simple Songs. Currently Betty is getting 5 feedings a day through her G-tube and we have transitioned her onto a formula that’s for tube feeds and mixed with breast milk She will drink water from a cup with a straw and is taking some baby food by mouth. We expect her to have the feeding tube for a few years or until she takes all meds and food by mouth.
We are proud of Betty for making this mile stone and very thankful for all the help and support that we’ve received along the way.
She rocked her procedure. The Dr said the pressures in her heart are great and normal. Both of her arteries in the heart are clear and her stent has no blockages. We will know more tomorrow on what her rejection numbers are along with her labs.
As always thank you all for the love and support. I will post more once I go back to see her. Right now it’s just one parent and Lester beat me in rock, paper, scissors.
Well this little one is ready to be back at the hotel and in bed. Transplant team came in and talked to us. Betty’s echo cardiogram and ekg are all normal. We will get results of rejection level and labs tomorrow. If all looks good we will be dropping a few meds. Thank god even one less then the 14 she is taking will be great on her tummy. Another change that will happen is her rejection meds will be lowered which will allow her to build a bit of an immune system. Appts may also be changing to every 3 months and labs every 4-6 weeks
Hugs and love from Betty!!!
We got a call from transplant team last night. Betty’s rejection level from her biopsy is reading a 1R. This is good. She only has a little inflammation. Her antibodies levels are also reading at a zero. This is the news we wanted. They did find protein in her urine sample and they think this maybe because of her meds. The team will be meeting on Wednesday to discuss her case.
We could not be more happy right now. Thank you all again for the support and taking the time to leave words of love and encouragement!