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.