4 months and growing

Our little one turned 4 months old on March 9th. She is doing great. Gaining weight and growing so chunky. We followed up with cardiology in Houston and were told her heart is stable. Her mitral valve and left ventricle have not grown so it is looking more like a single ventricle repair. More info on single ventricle repairs:  http://pediatricct.surgery.ucsf.edu/conditions--procedures/hypoplastic-left-heart-syndrome.aspx. Her next surgery would be the Glenn. She has a functioning left ventricle however with her mitral valve being small it would most likely not be able to keep up with the work load of the heart if we moved forward with a bi ventricular repair. Not what we expected but these surgeries have been going on for over 30 years and are very successful. We know Angelica is so strong and will continue to amaze us with recovery and what she can do.

She is seeing PT, OT and speech therapy weekly. This is to help her with her torticollis and developmental issues that often arise with cardiac children. She is a busy girl working on stretches daily.

She loves looking at lights and tracking things. It has been so fun to watch her grow and continue to develop. We have been very busy with doctors appointments and therapist but we are so amazed and in love with our baby girl.

Chris and I are learning sign language. We are taking an online class Monday evenings. We were told by one of Angelica's many specialist it is best to start learning now because she may pass us up once she starts learning. We are so excited to learn a new language and become a part of the deaf culture. We encourage all our friends and family to learn as well. There are videos on youtube if you search BRAVO ASL. They are great. They are not the entire video as we get with the class but should be helpful.

I will try to keep up with the blog monthly. The Helberg family is doing great and we are so very in love with our baby girl.

February 19

Angelica is doing really good. She is taking more of her bottle and has started giggling. She is such a sweet little girl. Cardio said her heart is stable at this point. We are still uncertain which heart surgery she will need. So very important for her to grow. She gets the g button placed march 8. We are excited to get rid of the tube. It has been so wonderful even though we are tubing less and less it is reassuring to know she is getting all the necessary calories. We are still working on home health appointments for PT, OT and speech therapy. She sees her Austin cardiologist every other week and her pediatrician once a month. We are following up with several specialist as recommended by Texas Children's. We love the time we have with her and charish our weekends. Loving everyday and so very grateful for our little miracle.

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.