Betty is doing wonderful. We had her GI, transplant cardiology, and ultrasound appts in May. She weighed in at 12lbs 11oz and no longer needs Mom’s milk fortified. Her blood clot was still present in her legs but has significantly reduced in size so they continued with the Lovenox injections twice a day in her little thighs. We will return for another ultrasound to see the status of the clot. The reason why they need the clot to clear is because yearly they will do Cath biopsies of her heart and they need to go through her artery in her leg to access her heart to do the biopsy.
Transplant Cardiologist- Betty’s heart is doing terrific. Her Echo came back with a reject level of 1 which is fantastic and EKG came back normal as well. They lowered her magnesium and took her off of one of her antibiotics and raised one of her other medications. We are also off all narcotics and sedatives. Meds are now 5 times a day (from 10 times a day) and she is down to 10 meds (from 18)!
Lester is back to work full time and Andrya is Betty’s full time Mom/caretaker. Due to her transplant she will not be able to attend a daycare so that leaves Mom and Dad.
In May Betty also transitioned from her small intestine to her stomach with an NG Tube.
In June Betty turned 6 months old!
Betty had her swallow study at Seattle children’s and she passed with flying colors. Milk and baby foods are not being aspirated and her swallowing is spot on. Being the rebel she is and to prove Mom wrong they gave her a bottle and she sucked on it a little bit. 6 months I have been trying every day! After talking with a speech language pathologist Mom will be trying way harder and giving her a bottle to play/suck on and also working more times a day with the bottle.
We also introduced baby food. She can have 1 teaspoon twice a day. She seems to like sweet potatoes and carrots and is not a fan of bananas.
In July Betty weighed in at 14lbs and 4oz and is 25.5in long. She is starting to hit some milestones even if she’s a bit behind. Most days start with her big smiles after waking from a long night of sleep and follows with her sitting in Dad’s chair. Then we do floor time, Johnny Jumper, physical therapy, feeding therapy, naps and play time.
Due to Betty not advancing in taking food by mouth we reached a roadblock. We talked to her GI and Transplant Doctors and they all agreed that her NG tube could be causing an oral aversion. After much discussion we all agreed the tube needed to go and we can switch to a g-tube https://kidshealth.org/en/parents/g-tube.html
Betty did well for the NG surgery. She was in some pain and they had to give her some morphine, and then she was able to sleep peacefully. The surgeon said all went well. It’s weird not seeing tape on her face and a tube coming out of her nose (7months). We are learning all we can about her new feeding tube and have already fed her bed.
We returned home near the end of July. This little girl amazes me everyday. We are still dealing with some pain and learning about her new feeding tube. Here are some pics of a tube free face!!!
On July 27th, Betty cut her first tooth and another is right behind it!
This wonderful little girl means the world to us. Her deck of cards are unique but this Mom and Dad would not have it any other way. The universe and those up above looking down on us found it fit for us to have this special girl. Life for her will always be filled with daily meds and monthly Dr appts but it will also be filled with lots of love, snuggles, and kisses. Love you Betty!!! Proud to be your Mom!!!