Open Heart Surgery - Rebekah Hope Richardson

Best UPDATE To DATE!!

September 3rd: If someone told me one week ago while waiting in the PreOp room that my daughter was going to have open heart surgery with an incision that is 5 inches long across her back and under her arm, and then discharge from the hospital 7 days later, I don’t think I would have believed them. YES DISCHARGE, as in leave the hospital for good and go home to begin a “normal” life. That is what happened today at 3pm for our sweet little Rebekah Hope!

Since September 1st, we have been on a dedicated stride to increase Rebekah’s feedings from 25ml to 70ml every 3 hrs. The doctor was pushing for the feeding tube but as her mother I pushed back and said just give her a little time. I talked to my little girl, and told her she needs to eat if she wants to go home. She took that challenge to heart and within 6 hours of that last conversation with her and the doctor she was up 15 ml per serving. With much dedication and persistence from my mother, the nurses, and myself - we were patience with Rebekah to take her time but finish her milk. She understood the assignment and she progressed very quickly. We hit our benchmark yesterday of 70ml and without any hesitation, the cardiologist started the process to get us discharged from the hospital and on our way.

Today we still had to complete two final tests before we could leave, those being the final echocardiogram and the hearing test. Both results came out positive and she passed both with a stable heart and great hearing! We are so grateful for this and was a tremendous sign of relief.

After we packed up all our belongings, we just had a last few meetings with the physical therapist, speech therapist, pediatrician, and cardiologist- all doing their final checks and determinations for a final information dump and a green light to go. Do this, don’t do this and ofcourse if you see this, this, this, this…. call us and 911 immediately. We are well prepared and trained now including even a CPR training provided by the hospital to manage Rebekah’s care at home.We know that at home is the best type of care for her full recovery and is much needed after 2 weeks in hospital rooms.

We are grateful and blessed to begin this next chapter with our sweet little Rebekah’s Hope, nurturing her and loving on her without all the cables, monitors, and rigorous protocol assessments. I’m tired, shes tired, and we’re all tired of this process. We are so ready to embrace a little relaxation and newborn snuggles. I KNOW that her recovery and healing is an absolutely miracle and I am truly grateful to every one of you who have cared enough to love her, pray for her, and Hope for her! Thank you, thank you, thank you!

God Bless you all ! ✝️

**********************

September 1st: We are now on our 12th day in the hospital which seems like a short time compared to our expected one month stay but for someone who never experienced this before it’s quite the twilight zone of time. It’s definitely makes me feel empathetic to families who live this reality day in a day out for their sick children who have to spend months here. It’s not a comforting place despite everyone’s kindness and care, and room service delivered. There is nothing that compares to being in your home, your own bed, and surrounded by your family. I am grateful for my mother who has been here the last 12 days supporting our family in my time away from my children and making sure they get to school on time and keeping up with the mother duties around the house. She has also given me 2 nights to be here with Rebekah while I provide comfort and stability to Gabriel and Solace at home. I am thankful for our amazing support system as this journey would be so much harder without them.

August 31: Rebekah has been working on her feedings and this is the primary goal for discharge out of the hospital. She was struggling early on in the day which made the doctors question whether pulling out the feeding tube was the right decision. They were pushing to have one reinserted for nutritional value but I provided my motherly reasons as to why I wanted to give her time. Those reasons being that they basically starved her for 3 days and so her stomach most likely shrunk in that time and she just needs a little more time to adjust to the increased volume. The other reason being that we will never know if she can’t handle normal feedings if we are supplementing via feeding tube. The doctor said we would meet in the middle and he gave her until 12am last night to get up to 40 ml, otherwise the feeding tube was going back in. THANKFULLY, she was able to complete two 45 ml feedings over night and they have now bumped her up to 55ml!!

The goal is to get her tolerating 70ml every 3 hrs and a minimum requirement for discharge. We will continue to work on this with her!

There is a little concern on some wetness in her lungs which the doctor said could be coming from the TPN drip (total parental nutrition). They have this on this until her feeds are normal but I am hoping they can take her off of this soon. I do not want any reason that could be causing the wetness in her lungs as this is leading them to give her an X-ray every morning. This is ALOT of radiation, with potential side effects down the road. I pray that we come into agreement that she will not be affected by the X-rays and God would protect her little body from all this exposure Thank you for everyone who praying with me ! I appreciate you!

As for her Hemoglobin, it was increased since last week. We were at 8.5 and yesterday it has replenished to 9.8. They did have to run some labs on her this morning but it was a very small amount. I am praying and hoping her hemoglobin continues to replenish and return to healthy amount.

Thank you everyone for taking time in prayer to care about my daughter’s needs! There is power in numbers, “20 For where two or three gather in my name, there am I with them.” - Matthew 18:20

****************

Praise Report!

Rebekah Hope is recovering so well! I attribute her healing to all of you and your prayers up to God! He has heard you and we have made leaps and bounds in such a short time! Thank you for all your support via the GoFundMe or prayers & kind words of encouragement!

Aug 30th Update: Rebekah was cleared to drink more milk. She has been on a restricted diet of 10ml - 15ml, and is allowed now to eat until her heart’s content This has provided much comfort and myself knowing that my baby is no longer starving. Since they have removed this restriction, they have also removed her feeding tube

They conducted another X-ray last night to make sure all of the air in her chest has dissipated through the chest tube. After 3 long days of having this chest tube sutured to her side, they were able to pull it out of chest cavity and bandage her left wound site up. This was very painful for her, but a big relief to finally having that uncomfortable tube out.

Another wonderful victory is getting artery line out of her wrist. It was quite large and on a brace to keep her from pulling it again.

With everyday, one more tube is removed and it feels like a chain that is breaking. We are so close to the finish line, I am dreaming of what it feels like to push my daughter down the hall and say “We are going home baby”.

******************

Aug 29th Update: Thank you everyone for all the recent donations on Go Fund Me, We truly appreciate! We also appreciate everyone kind messages about prayers and fasting for this little baby. You all are truly incredible!

Rebekah Hope Richardson is recovering so well today. Her color has come back fully and her eyes are brighter. I have been much more optimistic seeing these changes in her!

ENT just came by to drop a camera down her nose to access her vocal cords. This was very painful for Rebekah which caused her to cry very loud, but was a very good soon for her vocal sound. In conclusion there was no vocal injury, praise the Lord

For now they have hooked her up to a feeding tube via the nose to deliver 8ml of breast milk for nutrition. I am grateful for this as this has been the biggest sign of discomfort fo her. The speech therapist has to clear her for regular feedings and then we can slowly integrate this back into her day.

As for the tests her hemoglobin can back low at 8.5 but the ICU doctor is attributing this to all labs being run over the last few days. They have decided to halt any labs until Monday to allow for her to replenish her blood supply. Please pray this is the case and not something more serious Thank you so much!

#PrayersForRebekah

https://www.gofundme.com/f/open-heart-surgery-rebekah-hope-richardson/cl/s?utm_campaign=fp_sharesheet&utm_content=amp13_t1&utm_medium=customer&utm_source=copy_link&lang=en_US&attribution_id=sl%3Af012ff20-6b2c-4ada-a26a-81eaa651292b&ts=1756496866

August 28th: Rebekah Hope has opened her eyes and awoken from her sedation. She is in a lot of pain which they have been treating with two different pain medications. Her blood pressure is still slightly higher in her upper extremities versus her lower extremities and we are praying they continue to even out over time. They are rotating her body every two hrs for blood flow to all over her body, along with moving her breathing tube to adjust with her position. They have to clean out her secretion via breathing tube which is also quite painful for her if you can imagine having a tube down your nose that is getting shoved in and out. and. She cry’s every time they do this but no sound comes out. During surgery they have to move the vocal cord over to access the heart and most children/babies have a sore throat and hoarse tone after. Hers however is non existent which can be normal but it’s also is a cause for concern. They are planning on sticking a camera down her throat to ensure her vocal cords are closing correctly. If they are, we can begin to start small feedings again. If they aren’t due to a vocal chord injury, they will have to feed via tube.

Please lift this in prayer today and come into agreement with me that everything is going to be perfectly fine with her vocal cords and her blood pressures will continue to balance out. Thank you friends and family ❤️

Hallelujah! Praise the Lord!

Rebekah Hope Richardson is out of surgery.

We were met in the hall by the team of doctors rolling her down the hall with a lot of equipment still looked up. The hardest part was seeing my little girl white as can be, lifeless on the table as the doctor continue to press the blue balloon in her hand breathing for her. It took me back to 2022 when I lost my dear Rose Mary and it’s something I hoped to never see again. If any thing the reality of everything that we just experienced finally sunk in with full gravity.

So now we wait….

We wait for them to call us back,

We wait to see our daughter in the recovery ICU,

We wait to see her come back to life.

Only now can we take a deep breath knowing that we made the right decision especially after consulting the surgeon after and discussing the severity of the coarctation. We will continue to take deep breaths and pauses of gratitude, being thankful we had the access and resources available to us to an incredible surgeon who specializes in this field for babies. Our hearts are full of gratitude to everyone who has expressed their love in many forms throughout this journey to surround us with peace and comfort.

Now that Rebekah Hope is out of the surgery we know this next chapter is also going to be very challenging in the recovery process. The doctors are going to be watching her closely and tending to her every need for a week. We pray and hope she recovers quickly and that the surgery will prove to be successful.

Thank you for all your continued prayers as we enter into one of the longest nights here at the hospital!

God Speed!

The Richardson Family

*******************

Aug 27:‼️‼️ Major Change ‼️‼️

Last night at 9:30 pm we were told that the surgeon has cancelled his vacation and would like to take the patient Rebekah into the operating room today. We quickly said YES after praying as this would mean a shorter time here in the hospital so we can bring Rebekah home with our family!

Our surgery is scheduled later this afternoon around 2-3pm! Please keep us in your thoughts and prayers! Thank you everyone!

Aug 26: Thank you everyone who has reached out by phone, text, Instagram, or Facebook! I am truly grateful for everyone’s expression of care during our time of need. I have not been able to respond to everyone’s messages due to many factors. My daughter Rebekah Hope is on a restricted 10ml breast milk diet every 3hrs and can’t consume any more because of the risk of lack of profusion in the gut from her heart condition. They are monitoring her blood pressure via femoral pulses, sensors, and regular blood pressure cuff test on her extremities. They are ensuring she does develop NEC which is a shutting down of her bowels from lack of profusion, which is why her diet is so restrictive. Thus meaning she is very hungry at some of her feedings and I will have to comfort her for up to 1.5 hrs until her next feeding. This has been the hardest psychological stress knowing what she needs but following the doctors orders to prevent further complications before surgery. I am also pumping every 3 hrs to ensure she has adequate nutritious food to eat. On top of all this we have had a revolving door of nurses, nurse practitioners, cardiologists, radiologists, genealogist, ICU Doctor, speech therapist, psychologist, surgical assistant, and finally the one we have been at the mercy of his time, the surgeon.

Today was our first day to speak to the surgeon that will be performing Rebekah’s Surgery, God Willing. He is however going out of town tomorrow, which has been delayed since this previous weekend. There is an alternative surgeon should Rebekah need immediate surgery while our surgeon is away but we have decided to wait until he arrives back from trip.

He will be out of town for atleast a week to week and half, and will be keep close updates of our daughter. We have opted for this because he was our original doctor in the initial consult and is world renowned for his thoracic surgical practice.

If you would like to continue to pray for our family please pray for our children at home and the adjustment our family is going through. It has been difficult to be split from them and alternating places in the juggling act of parents, time, and attention to Rebekah who needs but also two young children Gabriel & Solace. We also appreciate the prayer for our surgeon to get the rest that he needs in order to perform the surgery when arrives back from his vacation.

Another PRAISE REPORT is Rebekah Hope is finally off of Oxygen and breathing completely on her own

Praise Jesus

Thank you everyone, God Bless you all !

********************

Thank you everyone who has been reaching out and sending their prayers, thoughts, and support during this time! We are so thankful for everyone believing that God can heal this babygirl. We are so grateful for everyone’s faith and hope in a time that has been very difficult for all of our family. God is with us, and your prayers matter - every single one! I am excited to tell you we do have one amazing PRAISE REPORT to share. God has already healed a piece of her heart. Our original diagnosis confirmed by TWO doctors prior to her birth within 6 weeks of her being born was that her arch was Hypoplastic : meaning that their was a longer segment from ascending and descending part of the Aortic Arch. This longer segment would be mean a Sternotomy : a surgical procedure cutting through the sternum (breastbone) to gain access to the heart and lungs for the open heart surgery. Yesterday however during the medical rounds I attended the meeting where the doctors discuss the patients status in the hallway with changes to their care plan, medicines, and major changes are discussed. At the very end of the meeting the doctor stated that Rebekah’s Diagnosis of her heart being Hypoplastic has been downgraded to a CoArc of the Isthmus. Now while this means she still needs surgery, but the surgery is called a Thoracotomy.

A Thoracotomy is performed through the incision on the back to access the heart and compared to a Sternotomy it can lead to faster recovery times, less pain and bleeding, and lower risk of infection. It is also has benefits for reparations if necessary later on down the road.

This is an ANSWERED PRAYER! We are going to take all the HEALING the Lord will give us ! Praise HIM!!

We have much Good NEWS to share and a Praise Report soon to be released ❤️

Thank you for all the generous donations yesterday! We are so grateful for all your support and hope the Lord “Blesses you and keeps you!”Numbers 6:24

Aug 24: 7am Thank you for everyone that is still reaching out with your prayers. God hears you ! God hears us ! Our voices and hearts are strong for Rebekah! I will tell, It’s NOT OVER YET! To my prayer warriors, keep praying for her healing ! God is Moving !!!

Aug 23: We finally arrived at Dells Children’s Hospital to be reunited with Rebekah Hope. She was hooked up to many machines with alarms going off every 3-5 minutes monitoring her blood pressure from the ascending and descending (Pre & Post) measurement along with oxygen and several key determining factors for stability. We were visited by many health professionals to discuss updates and get up to speed with current tests and operations that been performed. Upon further discussion we were informed that a critical analysis for determination for surgery was performed without our knowledge. When I asked for specifics on the data findings, I received much hault and pause regarding that information. I was not allowed to see the notes as this was critical health records and I would have to go through medical records in order to obtain that charting. The only way I could obtain that charting is through a social worker which the social worker does not arrive until tomorrow Monday.

Now the reason why this important is because our second opinion provided for us critical questions to ask at the time of birth that prepared us for us to be logical about this analysis of mild to critical factors relating to the heart and its viability for life. One of these questions I asked revealed that Rebekah DID IN FACT pass a test of the (Pre and Post) of a life sustaining heart. Now the doctors are stating there were additional factors relating to their determination for conclusion but could not provide details of such to me, enough for me to feel comfortable to accept that surgery was the only option for Rebekah. We will wait to review the charting report of the assessment on Friday and have also asked for another echocardiogram to be performed and assessment of the PGE/PDA relationship test to be performed again but in our presence.

Aug 22: We appreciate everyone’s generous donations and we hope you all blessed abundantly in your lives ! Thank you for caring about our family and daughter.

Aug 22 Update: Rebekah remains stable in her room being taken care of by her special daddy while mommy is finishing recovery at St David’s. We received a call from the cardiac team today that a consensus has been reached about performing surgery on Tuesday. Monday we will meet with the cardiac team to discuss their plan of approach concerning her Aortic Arch and VSD.

Please pray that the cardiac team makes the right decision concerning this method of procedure! Thank you

********************

It is with much sadness that we are sharing with you that are sweet Rebekah Hope is being transported to Dells Children’s Hospital. We all prayed and hoped that God will heal this little babies heart so that we would not even have to endure another traumatic birth. Life has its way though, and even in the valleys we can find Hope for purpose.

As for our daughter she has been diagnosed with a Hypoplastic Aortic Arch and a Ventricular Septic Defect. This diagnosis means her arch that comes off the left ventricular is too narrow for proper blood flow to the rest of her lower body. The PDA which helps with the blood flow while the baby is in the womb closes shortly after birth but is staying opening from the prostaglandin medication. They will continue to administer this medication to allow for time to prepare for surgery.

We went to several doctors throughout this journey and received a second opinion to provide clarity and understanding. Both doctors arrived at the same conclusion that if she needed surgery it would be through the front of her chest called a Sternotomy. This is a very difficult realization to absorb as this means our little newborn with being undergoing one of the most serious surgeries in only her first few days of life to give her a chance at life.

This is very difficult for our family right now and will continue to be a long road ahead. The doctors expect from this point to perform the surgery within the first week of life, ICU the second week, and 4-5 weeks Hospital stay. God willing she will be released for another 4 weeks of recovery at home with mom helping with wound care. Due to this long recovery road ahead, mom and dad will not be working as much as they normally do and will need to take some time off to care for Rebekah Hope. The doctors anticipate life long care, praying and hoping she lives through the surgery.

If you like to support our families medical expenses for the open heart surgery and any minor expenses the families incurs while in the hospital please donate to our go fund me. We really appreciate everyone’s help throughout this time so we can focus on the recovery of Rebekah’s heart instead of the tens of thousands of dollars of medical bills that await us.

We appreciate everyone prayers as well, as we are trying to balance taking care of our two children Gabriel and Solace, Brooke’s C Section recovery, Alexi’s demanding job, and now Rebekah’s long journey ahead. Please keep her in your prayers, we are most grateful for this!

Thank you,

God Bless You All