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.

To The 15th Floor!-Nov. 26th

Angelica is doing great.  Yesterday, only three days post op, she was moved out of the cvicu to the 15th floor.  Yay!!  The 15th floor is the recovery floor where she is learning how to eat and she has to grow. She has all of the motor skills but lacks endurance. The occupational therapist said the endurance is the easier hurdle to overcome than developing motor skills. It's projected that she will be here at minimum 1 and 1/2 weeks but could be longer.
Thanks to everybody for their prayers.  We are truly blessed to have such great friends and family.
Chris

November 24. Thanksgiving.

Woke up today feeling a bit defeated. Yesterday was a rough day for Angelica. She was hungry and in pain. It is very difficult to watch your child suffer and there is nothing you can do to help. Today was a much better day. Angelica is feeding and sleeping. She was slightly fussy but was able to rest. She had her drainage tube removed, her catheter removed, was taken off oxygen, and moved to a new bed. She still has her oral feeding tube. OT plans to work with her on feedings so that we can remove the tube from her mouth. She still has an IV. Pulmonary band seems to be doing well. Next step will be moving to the 15th floor where she can grow and heal.

We spent thanksgiving with the Ronald McDonald house and their families. Had some good food and good conversations. These people are quite amazing. Their stories are so inspiring.

Very grateful for all our family and friends that have helped out. Thanks for all the prayers and kind words. We are thankful for all of you.

November 22, 2016

Surgery for pulmonary band placement was this morning. We were notified yesterday.

ENT scoped her to verify epiglotis formed properly. This was one of the many concerns. They said although malformed it is not bifurcated as originally suspected. They stated it should not create any feeding issues.  As she has already been feeding and taking bottles we suspected this. Still good news to hear. We will continue to follow ENT outpatient for hearing work up and probable hearing aids.

Cardiovascular surgeon  stated surgery went well. He did not do a transesophageal echo (image of the heart) so was not able to obtain more imaging of her heart. We are still unclear what her big surgery will entail. We are praying for a double ventricle repair in the future. Today's surgery the pulmonary band was placed loose so that she can grow into it. The hope is the band will get her to 9 or 10 months. Time will tell. She will be in the cardiovascular ICU and as she improves will hopefully moved to a floor. Once on the floor it's a waiting game. Just waiting to see how well she feeds and grows. She is resting peacefully at this time. She will be allowed to come off medication and hopefully extubated tomorrow morning.

November 19th

Our baby girl is just growing and doing well. Cardio team said surgery will most likely not happen next week. There are too many heart babies and not enough surgeons. Angelica's heart is stable so there is no rush for surgery. So we will continue to allow her to grow. Hopefully it will happen the following week. Mommy and daddy are ready to get our baby girl home.

This week was an emotional rollercoaster. We have had many specialist talk to us. Genetics wants to do testing however they said even with testing there is only a 20 percent chance we discover a diagnosis. Multiple specialist have requested we will follow them out patient. We have heard many "this may" or "may not happen" discussions regarding her future developement. As for now she is doing  everything a newborn should do and she is developing as she should. I am tired of the "this may" happen talk I choose to be positive and have faith my daughter will be amazing and will be able to do whatever her heart desires.

She is beautiful and she is loved. Thank you to all the family for love and support. We are very fortunate to have such great family and friends.

Wednesday 11/17 Update

Angelica is doing great.  She acts like any newborn baby, eat, sleep, poop.  She gets hangry about 30min prior to each feeding letting us know that it's time to eat.  Typically all is good for 2.5 hours after we feed her and then the hangry Helberg kicks in. Momma is getting a lot of time holding her and is very good at calming her.  Only external sensors and a feeding tube are attached to her now, no IV or PICC lines.
It's a waiting game now. We are in line for surgery to have the PA band placed which probably will happen sometime next week.  The PA band is a intermittent surgery to get her to the big one. Typically there is a 2-3 week recovery time after the PA band surgery and then if all is well we get to go home.  We are hoping to be home for Christmas to spend Angelica's first Christmas at our house.

She was born without ears. This was a surprise to all of us including the physicians. We received good news on Tuesday that her cranial nerves are developed.  Internal hearing structures exist to some extent. Hearing tests have been ordered. She does startle so we think she does have some level of hearing. We won't fully know her hearing capability until she gets older.

This has been such an eye opening experience. We feel very humbled and blessed to be given the responsibility to raise such and amazing little girl. Sitting in the NICU my heart goes out to fellow NICU moms. Thanks to all our family and friends who have been there for us.

Love,
Chris, Amanda, and Angelica

Monday November 14th

Cardio is planning  to place a pulmonary band to help restrict the extra blood flow going to her lungs. This was a procedure we expected at birth if her heart didn't need immediate resolution of the DORV. This is something that will be beneficial to future bottle feedings. It is considered palliative in that it will allow her time to grow bigger and stronger prior to major heart surgery needed in the future. We got a room at the Ronald McDonald house. Very fortunate to be able to stay some where close to the hospital at a low cost. No other news today. She is so precious and we are so in love.

Angelica Maricella Helberg was born 11/9/2016. She weighed 6 lbs 12 oz and was 18.5 " long. She is doing well. Her heart condition will need surgery however we are waiting to hear what type of surgery she will be needing. The cardio team will meet Monday to discuss and will give us a recommendation at that time. She was born with a couple of other abnormalities that are getting worked up. We will give you guys an update once we know more. She is eating and growing and just the cutest little thing. I developed pre eclampsia and I am now doing better but it has been a rough couple of days. We are so in love with our baby girl. I will be discharged from the hospital tomorrow and Angelica is predicted to be here for at least a month however that can change. I will continue to update this blog. It has been quite a hectic past few days. I apologize for not updating this sooner.

11/1/2016 38th week Doctor's appointment

Angelica is still breech and does not appear to be going anywhere. We have scheduled a C section for next Wednesday November 9. Dr. Ivey wanted to do the surgery on Monday however there are no surgical rooms available until Wednesday. So she will be here in one week! We are very excited. We have been told due to her heart condition we will not get skin on skin time and she will be taken directly to the NICU. This was difficult to hear however I know she is in the best hands and getting the best care she can get. An echo cardiogram will be done in the first 2 hours to determine the extent of her heart condition and if anything will be needed urgently. Chris will follow her to the NICU.  We are looking into staying at the Ronald McDonald house so that we can be close to her once I get released from the hospital. We have friends and family who have offered their homes and we are so grateful to them. Not sure at this time where we will stay but I have faith it will all work out. We are eagerly awaiting her arrival. I will keep updating this blog as we know more.

10/25 37 week appointment

This morning my appointment with Dr. Ivey went well. Angelica is still breech and so we are leaning to C-section. Dr. Ivey is hoping to have it scheduled November 7th we are just waiting to see if a room will be available. Otherwise we have progressed nicely. My blood pressure has stayed with in normal range and I continue to measure on track. Eagerly awaiting to meet miss Angelica. Just two more weeks and she will be here.

Angelica's story

This blog has been created to keep family and friends updated on our precious blessing Angelica. At our 18 week ultrasound we discovered we were having a girl. Such exciting news! We already had her name picked out. She would be named after my mother, Angelica. 

Unfortunately we also discovered some abnormalities that were found on ultrasound and that she had congenital heart disease. After some testing and several ultrasounds later we were given her diagnosis:  double outlet right ventricle (DORV), ventricular septal defect (VSD) and transposed greater arteries (TGA). She may also have coarctation of the aorta and pulmonic stenosis however will be difficult to diagnosis until she is here. What does all of this mean? 

DORV 
In a double outlet right ventricle defect, the pulmonary artery and the aorta—the heart’s two great arteries—both arise from the right ventricle. While serious, double outlet right ventricle is treatable surgically.

Comparison with normal heart

In a normal heart, the pulmonary artery that carries blood to the lungs to receive oxygen arises from the right ventricle. And the aorta, which carries oxygenated blood from the heart to the body, arises from the left ventricle.

         Additional Defects: 

• Ventricular septal defect (VSD), which is essentially a hole in the tissue wall (septum) that normally separates the right and left ventricles. The VSD is actually necessary in this condition, since it allows blood to pass from the left ventricle to the aorta and pulmonary artery. However, the VSD lets oxygen-rich blood mix with oxygen-poor blood, so the oxygen level in the blood is usually reduced. Exactly where the hole is in the septum will affect the surgery needed.
• 
  
• Pulmonary (valve) stenosis (PVS, PS), a narrowing or blockage of the passageway to the lungs
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• Transposition of the great arteries (TGA), in which the aorta and pulmonary artery can be reversed, so that the aorta is more closely related to the right ventricle and the pulmonary artery to the left ventricle 

In children with DORV, the type of treatment and the degree of urgency will vary, depending on which additional defects are present and the degree of the defect. We will know more once she is born. It is difficult to diagnose degree of defect in utero. We were transferred to Texas children's hospital. Texas Children's hospital is ranked #2 in the country for congenital heart surgery. I have moved to Houston and will be induced at 39 weeks. Chris and I are very happy with our team of specialist. Texas Children's is an amazing facility. I know she will be in good hands.