Cochlear implant update

We had a wonderful holiday.  We spent it home in Austin with our little family.  Angelica is still not walking or crawling but she is scooting and rolling.  She is very much a fun spirited, silly and "I can do it myself" little girl. 

We tested the right side on Wednesday and did not get a response.  This was the side that we were hopeful would respond.  We will move forward with testing the left side on Tuesday.  Angelica did exceptionally well at the appointment.  It was just under 3 hours.  There is a great deal of testing that is involved when turning on a cochlear implant.  We are not upset with the results and if this does not work out we are confident she will be just fine.  The only frustrating thing with all of this is the 11 hour surgery.  Such a long time to have surgery for something especially with her heart condition. She is doing well from surgery so I suppose I need to move forward from that frustration. 

The deaf community is such a proud awesome community we are very blessed to have become a part of that community.  We are enjoying learning sign language and have quite a ways to go.  She loves to watch people sign and she is signing a few words already.  Dad was the first and mom is on occasion.  We have had so much fun watching her grow and learn.

Hope everyone had a Merry Christmas.

love,
Amanda, Chris and Angelica

Update 12/8

We are home! Feels good to be home.  Angelica is tired and fussy as expected but she is only expected to feel down for 3 - 5 days. Looking forward to catch up on our sleep.  We will follow up with the ENT in 1 - 2 weeks and then we will be told when we can test the implant.  Thanks for all the continued love and support.

Cochlear implant update

Surgery finished around 630. She did well overall. We are staying the night in the hospital to monitor her.  Plan is to leave tomorrow.  Cochlear implant testing in the OR showed limited stimulation on one side and no stimulation on the other.  It is unclear at this time if the implants will provide hearing.   We love our baby girl and are excited to cuddle with her this weekend.

Cochlear implants update

They have finished with the second implant. They will be finishing up and should be done in the next 45 minutes.  We are anxious to hold our baby girl.

Cochlear implants 12.7.17

Today is the big day!  Surgery began at 630 am.  Arrival was 545 am.  The expected length of the surgery is 8 hours.  This morning was one of the most difficult hand offs.  Angelica is so much more aware of her surroundings.  Praying this is the last surgery/procedure for some time.  Angelica is doing well.  They are working on the right side first.  Dr. Harshburger our plastic surgeon was present this morning to assist Dr. Roehm the ENT in placement.  They have mapped her nerves and are moving forward with insertion of the device. I will continue to update this blog throughout the day. 

-Amanda

Feliz Cumpleanos Angelica

Our baby turned one.  We can't believe that a year has passed.  She has overcome so much in her short little life.  It's crazy to think a year ago today we were at Texas Children's in the NICU waiting for her first heart surgery.  I wish I could go back in time and tell myself "it will be okay".  "Enjoy those newborn noises and snuggles." 

We had a wonderful week with family celebrating her birthday.  During the week Grandma and Grandpa Helberg came to visit her in Austin.  She was spoiled with lots of love and affection and on her birthday she was spoiled with presents.  She loved her tricycle, we have to hide it from her because when she sees it she fusses because she wants to ride it.  For the weekend we went to Corpus to visit Grandpa Perez, Uncle Tony, Aunt Aimee, Tia Elvira, and cousins.  She was not a fan of cake but loved auntie Aimee's pumpkin cupcakes.

We received good news!!!  The MRI results showed the cochlear nerves are present and going into the cochleas which means she is a candidate for cochlear implants.  It is very exciting but it we won't know what this means for her until after she has had them for awhile.  Cochlear implants can be helpful for some and not helpful for others.  I am very nervous for her to be under anesthesia once again.  Baby girl has been through so much and it can be overwhelming as the parent.  I know she is a strong girl.  The recommendation is to have surgery as soon as possible.  We are currently scheduled for December 7th.  Her heart is stable at this time however cardiology has stressed the importance for her to remain healthy.  RSV and flu are now being seen in the community.  This also makes me very nervous to go to a hospital during this time of year.  The doctor has reassured us it will only be for one night and she will not be on a floor with sick children.  She will be on a surgery recovery floor.  Lots of prayers for a successful surgery and to remain healthy through it all. 

Christmas is just around the corner and we can't wait to spend it with her.  She is going to love all of the lights.  Mommy is already getting started on Christmas decorations :).

Thank you all for your support. 
God bless. 
Amanda and Chris

MRI and removal of clogged tear duct

Angelica has been doing great. She is a very happy baby. We had a sedated MRI and small surgical procedure to open up her tear duct yesterday. The MRI is to see if Angelica qualifies for a cochlear implant.  We will discuss the results with her ENT in a couple of weeks. She is doing well post sedation. We had been slowly taking Angelica out however cold and flu season is upon us so we may have to retreat once again.  The cardiologist said we still need to be careful.  She loves people watching.  When we have taken her out she lights up.  Chris and I are so excited for the holiday's.  She is going to be Wonder Woman for Halloween.  Angelica is so visual I know she will love Christmas.  We are just loving our weekends.  Chris and I really enjoy spending time with our little family.  We look forward to each and every weekend.  I am so grateful for this little girl and my wonderful hubby ;). 

Discharged home to Austin

We had a doctors appointment yesterday and were cleared to return home. The NP that works for Dr. Mery said Angelica's lungs look great so we can go to once daily dosaging of lasix. We will most likely be weaned off the medication in the future. We will return to Houston when Angelica is 3 or 4 years old for the next surgery until then we will follow up with our cardiologist in Austin.

Angelica is doing well just still working on getting her sleep back on track from the hospital. We will give her time to rest and then will have another MRI in about 6 weeks to see if she has the anatomy for a cochlear implant. If she does we will have another surgery before the end of the year.  As for now she is happy and growing. Chris and I are so happy to be home with our baby girl 🤗.

Discharged and relaxing by the beach

We were discharged Friday. We have to stay in the Houston area for one week.  We have a follow up appointment Thursday with the surgeon.  We are currently staying at a cottage across from the beach 🙂.  Angelica is doing well. She had a rough night the first night out of the hospital. She woke up anticipating her morning labs at 5 am and was hard to calm back to sleep 😬.  Yesterday Grandpa Perez and cousin Isaac arrived with our dogs 😊.  Angelica is having fun hanging out with family and her puppies. Mommy is having fun with a little wine 💁🏻.  After Angelica went to sleep last night we worked on a puzzle. Isaacs idea of course 🙂.  I'm happy we did it was a fun evening that made us relax.  We are so grateful for all the prayers and well wishes. Angelica still has another heart surgery in her future and possible surgery for hearing later this year. She is such a brave strong girl.  We are so proud and blessed.

Post op day 8

Chest tube is out 💁🏻. She is so much more comfortable 😊. The plan is to discharge tomorrow if everything looks good. So excited we could be spending the weekend outside of the hospital. 💁🏻 Angelica is doing great. She is such a happy baby.

One week post op

Angelicas chest tube is continuing to drain so the surgeon decided not to remove it just yet. The team is very happy with her progress. She is a bit fussy today because she is overly tired. Labs and X-ray come in the morning at 5/6 am. She has been staying up later and getting woken up early daily. We did not have to have lab this morning so we were very grateful for that. Angelica is a hard lab draw because her veins are so deep so we are on the VAT list. A phlebotomist that uses ultrasound to assist in the lab draw. We have labs ordered for tomorrow morning. Surgeon still feels we can leave by Friday if her chest tube is pulled and echo looks good. Chris and I plan to take a "mini vacay" for the weekend. We are not allowed to leave the area so we are looking into homeaway rentals in Galveston or surrounding area. Praying for continued healing and rest.

Post op day 6

Angelica is continuing to do well. She still has a good amount of fluid draining into her chest tube so we have not removed that yet. Once the chest tube is out we can look forward to discharge. Good news is no labs tomorrow morning so hopefully she will get some good rest tonight. She has been playful however today her lack of sleep is catching up to her.  Her grandparents left this morning. We are so grateful for all of the help from our family and friends. Having family that lives in town has been so helpful as well.

Post op day 5

Angelica is doing well and getting back to her normal schedule. We had her pacing wire removed yesterday. She curently has her chest tube still in. We are told this can cause a great deal of pain. Angelica's pain has been very well controlled. We have decreased the codiene and are mainly on ibuprofen during the day.  She has two IVs and we are receiving IV lasix to help pull fluid off of her. She will also start a blood pressure medication to help make her repair more efficient. She is smiling and more playful today. We are hoping to get discharged this week but time will tell. Prayers that we continue to heal and chest tube comes out tomorrow.

Post op day 3

We are on the 15th floor. Got transferred yesterday afternoon. Angelica's is doing well medically. She is recovering as she should and possibly a bit quicker than most. When we were getting moved to 15 I discovered a pacing wire had been missed. The surgeon places pacing wires directly to the heart so that if the patient goes into an arrhythmia the surgeons have quick way to pace her heart. A member from the surgery team had removed the wires earlier in the day. It can be dangerous because they can nick the heart. Angelica had to be without food for 6 hours for the last removal. It's difficult to keep our Angelica NPO (nothing by mouth). She loves her bottle and food. So if you want a fussy baby don't feed her. These wires may be moved Sunday or Monday.  She did exceptionally well today. She pulled her oxygen off yesterday in the evening. Her oxygen is sitting where it should. So the doc agreed with Angelica, she did not need the oxygen. She has been playful and is getting back on her schedule. We have had a good day and are hoping tomorrow we can start weaning her pain meds down. Praying we continue down this road and will be out of the hospital this next week. Thank you all for the kind words and prayers.

Post op day 2 morning

Angelica is doing good. She has been able to feed so she is quite content. When we sit her up she has some discomfort so we have continued morphine and Tylenol. She is currently sleeping. We got extubated yesterday. Her Glenn line (arterial line in her neck) was removed last night, her arterial line was removed, her foley cath and rectal probe were taken out as well. We were switched to nasal cannula from high flow oxygen. What does all this verbiage mean? She is doing well and has less lines in. Currently we still have two IVs, a femoral line and a drain. Vital signs look good. Hoping to be moved out of the intensive care unit today or tomorrow. One of the floor docs just came in and said we can remove the femoral line 🤗 .   That means we may be headed down to 15 sooner than I thought. The 15th floor is one step closer to going home and we can stay overnight with her. I read back through my blog and realized I never stated what type of surgery she had 🤦🏻‍♀️.  She had the Glenn. It is the second surgery in a three surgery palliative repair. "Palliative" means this is not a cure but only extending her life. They have only been doing these types of surgeries for the past 30 years. There are individuals living to their 30s but we do not know beyond that. Angelica's heart is not the typical anatomy for this type of repair. She is very unique. She is a strong single ventricle but I am not sure what that truly means. What I do know is Angelica is so strong. I have faith God has a purpose for this little girl and it is in his hands. This experience is so very humbling. We had a nurse yesterday with a son with Down's syndrome. He has a heart condition as well. His heart was not suppose to make it past 4 years old. He is 22 and not on any heart medication. Angelica is such a blessing and has already taught me so much. Praying for a good day with great pain control. 🙂

Post op day 1

I woke up this morning thinking "I need to go fight for my baby girl".  We were told last night she would be extubated overnight. I asked the nurse to call me when this happened. I did not recieve a phone call so I knew it had not happened.  In the past we have had issues with the day and night physicians communicating resulting in poor patient care. For this reason grandma and grandpa stayed with Angelica.   Chris and I stayed at a hotel across the street. Once Angelica moves to the floor Chris and I will be staying with her and there will not be a great deal of sleep.  So we have been told to sleep when we can. I woke up at 3 am and asked the nurse for an update and she stated that Angelica was had not woken up enough to be extubated. I asked if we stopped the sedation medication and her response was "no" but she had too addressed concerns with the doctor.  I got to the hospital and expressed my frustration with the nurse and attending physician. Why had the sedation medication not stopped sooner? We were told Angelica would be extubated overnight and it seems the overnight doc had a different plan. We were able to extubate at 9 am. My frustration is we were told with her type of surgery they try to extubate as quickly as possible as it may complicate the surgery/recovery if not extubated. Medically Angelica is doing well at this time. She is in pain from surgery and "Glenn head" headaches that follow the Glenn. We are controlling her pain with morphine and Tylenol.  She was able to take her first bottle and did really well.  She is sleeping right now. I am praying for a speedy recovery and good pain control. I pray that she can recover as she has in the past and will be the same little girl that was admitted to the hospital. I can't wait to see that smile once again 😊.

Surgery update

Dr. Mery said surgery went well and he is very happy with the results. We will get to see her in about an hour. There will be another heart surgery in her future however he is hopeful it will be around 3 or 4 years of age. We can't wait to hold our baby girl.

Update

She is on the heart bypass machine.  Dr.  Mery has not made his decision on the type of surgery at this time. He is currently repairing the pulmonary artery that was damaged from the PA band that was placed at 2 weeks of age. She is doing well and we should know at the next up date what surgery he is moving forward with.

Surgery day

We are back at Texas children's. Angelica had a day full of appointments yesterday and she did great. She napped at the doctors. She smiled and played when she was awake. Yesterday when the docs discovered Angelica has some of her formula pumped at night they decided it would be be
st to admit her to prevent low sugar and keep her hydrated. Since there were no rooms available we were admitted to the NICU.  At night when we arrived Angelica had past her bedtime so she was very hyper. Giggling and rolling around. It was really cute and fun to watch.  It so reassuring that this child is admitted to the hospital her schedule is completely turned upside down and she remains in high spirits. This morning when I got to the hospital she was still asleep. The nurse said she did great overnight. Slept wonderfully. The surgeon Dr. Mery said he will do his best to evaluate if she can have a double ventricle repair but it looks like she will be getting the Glenn. The Glenn is the second surgery in a series of three for a single ventricle repair. I will continue to update as I know how she is doing. Thank you for all the prayers and support. God has a plan for her. I have faith that Angelica is in good hands and will do well.

7/18/2017 Surgery date is set

      We have set a surgery date for 8/2/2017. We are still unsure what surgery she will have but will be meeting with Dr. Mery, her surgeon, the day prior to go over everything. She is doing so great. Such a happy baby that can be silly. She is sitting, laughing and trying to crawl but not quite there. Chris left for Asia Sunday and will be there for the next two weeks. I have family coming to stay with Angelica and I. I am not sure how long we will be in Houston this time around but the scheduler said plan to be in the hospital for a minimum of a week and stay in the Houston Area for a week. Lots of prayers Angelica continues to grow big and strong and that she will recover quickly from surgery.

July 10, 2017

Angelica is doing well. She had a heart cath and transesophageal echo preformed Friday. The only time she cried was when the IV was removed. She is a champ. We had to stay at the hospital for 6 hours after the procedure so that she could heal. It was a long day but Angelica just slept and relaxed for the most part.  The doctor told us they will review all images and will discuss next best steps. At this point they are still evaluating if she would be a candidate for a double ventricle repair. Surgery will most likely take place in August. A double ventricular repair would mean only one more surgery and she would be more likely to participate in sports as she gets older. Also, life span is longer with successful double ventricular repairs. However we are not certain her mitral valve can handle that type of repair. Texas Children's is the best in the country so we have faith in their team and decision.

We stayed the night in Katy and drove back to Austin Saturday.  When we got home Angelica decided she wanted to be more mobile. She rolled over on her tummy and started trying to crawl. (Previously she has hated being on her stomach because of her g-tube.) Crazy child gets done with a heart cath and is up trying to crawl the next day.  She is so strong and continues to amaze us daily.

June 2017

Angelica is doing great! She loves to swim in the pool. Well, float in the pool. Her little personality is really coming out. She is quite, shy and very inquisitive. She loves watching the dogs and thinks Sophie is funny. She is growing and giggling often. We have continued to follow multiple specialist and recently had a sedated hearing screen, MRI and CT. The hearing screen confirmed that she is profound deaf. The MRI did not show hydrocephalus and the CT confirmed abnormalities typical of her condition however the Neurosurgeon stated these abnormalities should not cause any issues. ENT is wanting to obtain more images to further evaluate if she will qualify for a cochlear implant. Chris and I would love for her to hear if it is an option however we are also very excited to learn sign language and embrace the deaf culture. She is currently seeing the school for the deaf once a week. She has speech therapy, physical therapy and occupational therapy weekly. She is a very busy little girl. We are just having fun and enjoying every second we have with her. We will be returning to TCH next week for heart cath and to discuss upcoming surgery. Lots of prayers that the heart cath goes well. Surgery is projected for end of summer. I have been very anxious for this and although we have a wonderful sleeper mommy is not sleeping with all the anxiety of whats to come. I am so very grateful for every day I have with her. She is such an amazing little girl. God is good and we are so blessed to have her in our life. I will update this blog once we have the results from the cath.

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.

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!