Christmas Eve

We are finally home! Got the okay to come home Thursday. It was nice being in Houston with family but it feels good to be home. Especially nice to be back with our fur babies. We have many doctors appointments ahead of us. The genetics work up was not complete however they believe she meets the criteria for goldenhar syndrome. The syndrome varies greatly from child to child. She has anotia (missing ears), congenital heart disease and some other bone abnormalities discovered on imaging. It is a rare syndrome and so it is difficult to know what to expect. We will just have to take it one day at a time. For more information on the syndrome this is a good source: http://www.goldenhar.org.uk/what-is-goldenhar/

We will follow cardio in Austin and have a follow up appointment in Houston in March. We hope and pray the pulmonary band will get her to 6 or 9 months so that we can repair her heart with a double ventricle repair. She is still struggling to finish her bottles. We will have to have a g tube placed if she cannot finish 80% of her bottles in two weeks. We currently still have NG tube placed and we are feeding her what she doesn't finish in the tube. We had the hurdle of the over concentrated food and although her stomach issues have improved they are still present. We will try changing the formula. Hopefully once her stomach issues completely resolve she will be more eager to complete the bottle. We have an ENT appointment scheduled for late January.  We will discuss hearing devices. Hearing screening in the hospital was incunclusive on the right ear however no activity on the left.

Angelica is very alert. She is a normal 6 week baby. She loves to look around at her surroundings. She is a very happy baby and would sleep through the night if we let her. She is cooing and smiling. We are so blessed she has joined our family.

December 17

We were discharged Monday to stay local. Angelica and I moved back in with family. It has been so nice to no longer be in the hospital.  Angelica is still with the NG tube to help her complete her bottles. We can have it removed once she completes 80% of her bottles for a few days. Otherwise we will have to go to a more permanent solution, gastric tube. we would prefer her to complete her bottles but know that her growth is very important for future surgeries. Angelica started having stomach issues again and was not taking the high amounts of the bottle she had been taking in the hospital. We followed up with surgery on Friday and revisited with the dietitian. The dietitian wrote the incorrect amount of high calorie formula for Angelica to be taking. So she has gained weight but poor thing has been having tummy problems from highly concentrated bottles. the surgeon wanted to re admit us due to possible peritonitis. However Angelica's fussiness had surprisingly decreased the day before. They consulted pedi cardio and we were told as long as labs are normal we can go home but would need to stay local.  Angelica had a bit of a rough night. You can tell she is having stomach pain. Praying that once we get past  this she will excel at taking the bottle once again. We have a follow up with the surgery team Monday and follow up with pedi cardio Thursday. We are hoping we get the okay to go home after Thursday. I felt the formula seemed high but trusted the dietitian would not mistaken something so important. I cannot stress enough to be your child's advocate. If you feel something is off speak up. I wish I would have spoke sooner however had I not said anything this would not have gotten caught and Angelica would have had serious complications. The surgeon wanted to admit her because he stated heart babies cannot take infections like other babies. I appreciate the surgeons recommendation however I felt clinally she is stable x Ray showed abdominal distensión and increased bowel but she was not showing any signs of being sick. I truelly felt admitting her would only be a step back at this time. This is were we compromised to do lab work and follow up if necessary. As a practitioner I know mistakes can happen and the dietitian apologized. As a mother I have realized to trust your instinct and don't be afraid to question your caregiver.

December 7 - 4 weeks in the hospital

Yesterday the lack of sleep caught up to me so I rented a hotel room for the night. I hate leaving Angelica but having a new born in the hospital is tough. She is getting woken up throughout the night by nurses and hospital staff. And she needs to feed every three hours. On the way to the hotel I met a man in the elevator who had just lost his son. He got in the elevator and said "I feel numb". He then proceeded to  tell me about the events that occurred over the past couple days. His wife went into labor two months early and his son passed away a little over 24 hours later. I held back tears in my eyes and thought back on the day when Angelica was born. We all have our struggles in life. We all had/have this plan for our life and our children. God has his plan. I do not know why my child was born with a heart condition and without ears. I do not know if she will be able to hear. I do know my child is beautiful and loved. She is a blessing and she has already taught me so much about strength and faith.

I am so very grateful for my family. Thankful for the blessings in life.

-Amanda

December 4th

Chris moved back to Austin today. He has to return to work. So baby girl and I are in Houston on the 15th floor. She is doing well. Grandpa bought her a rocker and she loves it. She loves her paci, sleeping and taking the bottle. She is learning endurance for taking the bottle. She does really well and is up to  30 cc but needs to take 50. She may have to go home on a nasal gastric (NG) tube. So that we can continue to feed her and she does not have to take all by mouth. We are unsure when she will go home but we are hoping soon. Cardio said she has done as expected and should grow into the PA band. Her recovery from surgery has gone well. Everyday I am amazed at how strong she is.

I have stopped pumping. I really wanted to breastfeed Angelica however getting up at night and getting woken up by nurses does not allow much time for pumping. It was a really difficult decision but since Angelica cannot breastfeed until she conquers the bottle it made it even more difficult. I realized it would be best to just stop.

So grateful for all our friends and family that have been there for us.