We were discharged today and are home! Feels so good to be home. Angelica is doing great. You wouldn't even know she had two surgeries in the past two weeks. The g tube is easy to use and Angelica is continuing to do well with taking the bottle. It's nice to get the NG tube out of her nose. We have several follow up appointments to schedule. The hearing test done at the hospital showed Angelica does not hear and the hearing devices we hoped could help her will not be helpful. She has internal structures but they are not picking up sound. Next surgery will be on her heart and can be anywhere from 6 - 8 months. Then we can focus on other options for hearing. There is some new technology out there known as auditory brain stem implants It is just now being tested on children. At this point and time Angelica is deaf. This was very upsetting to us but I have faith in Gods plan. Knowing that God has blessed with such an amazing child. She is so sweet. So fun to watch her take everything in that she looks at. She loves watching tv, looking at lights and snuggeling 😊. We are so very in love with our baby girl and so grateful to be given the opportunity to raise such an amazing little one.

I will continue to update this blog with doctor visits and updates on Angelica. Thanks for the love and prayers!

Amanda, Chris and Angelica

January 26

Angelica's surgery went well. She was extubated this morning. She is tolerating pedialyte and will be able to try formula tomorrow. She kicked off one IV and somehow managed to hit the other one making it leak and no longer functioning. I think she is trying to tell us she is ready to go home. They placed a new IV and Angelica did great didn't even cry. She is such a tough girl. She amazes me everyday. Our little fighter 💪🏽. We will be here for the next 3 - 5 days. Once she can tolerate her feeds we will be discharged. Can't wait to go home with our baby girl.

January 24

Angelica is scheduled for g tube placement tomorrow at 2:45 pm. She is doing great since last surgery. She was taking 80% of her bottles so her NG tube was pulled but unfortunately she could not continue to take 80%. This just reinforces the importance of the g tube surgery. We all were hoping she would not have to go forward with the g tube surgery. However the surgeons and pedi cardio have all stressed the importance of nutrition for cardiac kids. Angelica is happy and doing great otherwise. She is ready to go home.

January 19

Angelica is done with surgery. She did very well. They used a balloon to open the ASD. The surgeon said that the hole had actually closed. It was open at the last echo one week ago. This should help with her pulmonary congestion. May even help with her taking the bottle. We will be here next week waiting for the g tube surgery. She will recover in CVICU and hopefully tomorrow we will be moved to the floor.

January 18

G tube was postponed secondary to pulmonary congestion. The pressure in her left atrium is elevated causing pulmonary congestion. This makes for increase risk to sedate and so the doctors felt it was best we hold off on an elective procedure. We are scheduled for a cath procedure tomorrow if her pressures in her left atrium are high they may open her ASD (atrial septal defect). If pressures are not to high it will be left alone. Hopefully we will have g tube surgery next week. She is doing well. Has been taking more of her bottle. She loves to look at mobiles, lights and even tv.

January 16

We were scheduled for G tube surgery today however it was canceled after reviewing her echo and chest x Ray. Her hole in the two upper chambers of her heart (ASD) is closing and is causing increase pressure in her left atrium. The surgeon is thinking we will go in and open hole prior to a g tube placement. We are waiting for final word what they would like to do. It's unfortunate we need another surgery on her heart but if we don't operate her atrium can become enlarged and she would not be a good canidate for the necessary surgeries in the future. We have a great surgery team. I Know we are in good hands. Will keep updates on this blog. Angelica is such a beautiful and awesome baby girl. She has been such a trooper. So blessed to be given such a little angel.

January 8

It's been nice being home and getting into a routine. Angelica is growing. She unfortunately has not taken off with her bottle so we will be returning to Houston January 16 for a surgery to have a g tube placed. The g tube is placed in the stomach. We will continue to bottle feed but what she doesn't finish will go in the g tube. The NG tube was not to be long term so we will remove the tube in her nose and place one in her stomach. She has been tryin to pull out her NG tube since she got it placed. She has some impressive skills when it comes to grabbing at the tube. It stinks that she has to go back to the hospital and have another surgery but this is necessary for her to grow. We need her to be big and strong for her next heart surgery. This next week we have appointments with ENT and cardio. I have been working on PT, OT and speech therapy. It's taking a bit because we are looking into home health. Dad is off to Asia today for work. Angelica and I have family coming to visit and help. Angelica has continued to grow. She is a great sleeper and when she is awake she is very alert to her surroundings. We are exciting to see the ENT and get more info on hearing. Hope to get her set up with hearing devices soon.

Hope everyone is having a great new year!