Saige’s Miracle Story Born with Ea-Tef
Saige’s Miracle Story:
After our son, Brecken, was born, Brodie and I wanted to have more children and after 15 long months, we were blessed to find out we were pregnant.
We were ecstatic to find out we were pregnant and then we found out we were having twin girls!!
The girls were born 5 weeks early. Sawyer and Saige were born on March 11, 2016. Saige was the smaller twin throughout the whole pregnancy and we were told to expect the worst at every appointment.
When the girls were born, Sawyer weighed 6 lbs 1oz and Saige weighed 5lbs 5oz. After the girls were delivered, they were both brought to the NICU, and after running some tests; we found out that Saige was born with two life-threatening birth defects. A condition called esophageal atresia (occurs when the upper part of the esophagus does not connect with the lower esophagus and stomach) and tracheoesophageal fistula (an abnormal connection between the upper part of the esophagus and the trachea or windpipe.)
March 13, 2016, was the first surgery. The surgeons were able to connect the stomach to the esophagus and close the fistula between the esophagus and windpipe. Hours later after her repair surgery Brodie and I were both wiped out, I had Brodie go to my mom’s and get a “good” rest.
Her monitors/numbers were going all over the place and as I watched the nurse and got the “mom gut feeling” within seconds her room was filled with Drs, NP, and nurses and I was asked to step outside. One of the NICU Drs came out and I was hysterical, please tell me what’s going on…. he said they needed to call the surgeon in… The worst imaginable thoughts were running through my head and all I wanted was my husband and my girls.
Finally, the surgeon arrived and placed an emergency chest tube, due to her left lung clasping. A PICC line was placed, two chest tubes, and she was intubated for 9 days. We were unable to hold her those long 9 days, we were able to hold her little tiny fingers and the top of her head. Saige was finally able to swallow on her own without being suctioned every 15 minutes.
March 28, 2016, a feeding tube was placed and that was her ticket to come home on April 4.
To this day, she still has her feeding tube and will have it for a while until she’s able to consume enough calories on her own. Babies with esophageal atresia and tracheoesophageal fistula have a hard time learning the suck, swallow and breathe method and have severe reflux.
Also typical is a barky cough and raspy voice due to loose vocal cords. Saige continues to get an esophagram done every couple of months to make sure the stricture does not need to be dilated.
In Saige’s condition, she has all of the above. She is a fighter, and here are some of her other battles thus far.
On May 3, 2016, we took Saige to the emergency department, as she was very pale, sleepy, and had a low-grade fever. She was admitted to the Sanford Children’s Castle and found out she had pneumonia, dehydration, two bacterial infections, two viral infections, a UTI (ESBL Klebsiella), and e-coli in her blood.
She was at the castle 16 days with a PICC line inserted and was on IV antibiotics. After many more tests and ultrasounds on her kidneys and bladder, we found out she had (VUR) reflux of the kidneys and bladder. This is what caused the severe urinary tract infection.
August 12, 2016, another trip to the ER, again pail and very sleepy, tests showed another severe UTI, two more bacteria were growing. A PICC- line was placed for antibiotics. Sept 1, Saige was back in surgery for a temporary treatment called vesicostomy. This is where a surgical opening in the bladder is outside of the body in the lower belly to allow urine to drain, preventing UTI’s and damage to the kidneys.
A month later on October 7, 2016, she had to have a revision vesicostomy because the opening was too big and was prolapsing.
After spending her first Christmas in the hospital with a fever, cough, and viral infection Saige went almost another 3 months without being in the hospital.
March 5, 2017, she was admitted to the castle for 10 days, which was over her first birthday for a bacterial infection and needed another PICC line.
April 25, 2017, Saige had a three-combo procedure done which included an upper endoscopy, bronchoscopy, and PE tubes placed.
October 4, 2017, another trip to the ER, again pail, sleepy, high fever, URI, and another UTI. She was admitted to Sanford Children’s Castle for elevated CRP(C – reactive protein), abnormal urinalysis, rhino/enterovirus, and was placed on an IV antibiotic.
December 3, 2017, another trip to ER, this time for fever, coronavirus, parainfluenza, UTI/E.coli, and dehydration. While Saige was in the hospital, she ended up having to have emergency surgery.
December 8, 2017, for a prolapsed vesicostomy. A couple of days after her surgery, we noticed that she was starting to act strangely and her coloring looked grey. We talked to the doctors, they drew up a CRP (C – reactive protein) and white count were very concerned with her levels. Her count was 5,000 for white blood and 159 for her CRP. That moment my thoughts were all over the place and I was very concerned, having a medical background, I knew those numbers were extremely high. I finally had to ask, is my daughter going to be okay? They did not answer me.
I asked do I need to start planning my daughter’s funeral. They just told me to stay positive and they were doing everything they could. Still to this day we are not sure what happened but think that she was going septic. Thankfully, we were still admitted and they started heavy IV antibiotics immediately.
After being admitted for 16 days, we were able to spend Christmas at home, but then were re-admitted on December 27, 2017, for emergency surgery for a prolapsed vesicostomy and it was decided to close her vesicostomy. We were able to be home in time for the dropping of the New Year’s Eve ball and hoping to bring in a new year without medical problems.
We went the longest 5 months without any surgeries or hospital stays. May 27, 2018, Saige had her adenoids and diagnostic laparoscopy (Morgagni Hernia) surgery, but thankfully was a same-day procedure. Enough time for her body to heal and rest until her next surgery in June.
June 17, 2018, finally the big day we had been waiting for, a very long time; re-implantation day! Dr. Eeg re-implanted both her ureters and closed her bladder. Since then we have not had any issues and she graduated from seeing Dr. Eeg with annual follow-ups.
On October 8, 2018, after not being in the hospital for almost 4 months, Saige was brought into the ER for cough, fever, and shortness of breath. Saige was given steroids to help with the inflammation and was sent home. The next day my mother-in-law called and said she did not like how Saige was breathing. We took Saige to Dr. McKercher her pediatrician. He did not like how she was breathing, gave her a couple of duonebs, and called the ambulance to come to the clinic to take her to the emergency department.
Saige’s Miracle Story Born with Ea-Tef
she was admitted for respiratory distress, acute respiratory failure with hypoxia, rhinovirus/enterovirus, increased O2, and pneumonia. She went home with vest therapy every 4 hours, oximeter, neb treatments every 2-4 hours, and several new medications.
November 3, 2018, we brought Saige back into the ER for shortness of breath and severe coughing fits. She was diagnosed with rhinovirus/enterovirus and parainfluenza 3, hypoxia, aspiration event, and Klebsiella with a UTI. They placed a mid-line to give her little arms a rest from being poked so many times from IVs and blood draws. She was discharged on November 12, 2018.
November 19, 2018, she came back to the emergency department for respiratory distress and was diagnosed with parainfluenza 4 and needed an O2 and fluids. Thankfully, Saige was only admitted for a couple of days and was sent home to be with family for thanksgiving.
Unfortunately, her short time at home did not last long, and was brought back into the ER by ambulance on November 24, 2018. We called 911 after she was stating low 80s and 70 breaths per minute. She spent one day on the peds floor and was taken up to PICU for high flow oxygen, IV steroids, IV antibiotics, continuous neb treatments, and fluids. She was diagnosed with recurrent pneumonia and klebsiella. She had a CT scan.
November 27 to confirm a collapsed lung and figure out a treatment plan.
December 4, 2018, Saige was finally well enough to have a Bronchoscopy done. During her surgery, the Dr. noticed that at the site of the TEF/EA there were bubbles, Dr. Moser was concerned and ordered an esophagram to make sure her site was still attached and that she wouldn’t have problems down the road. During this stay, Children’s Miracle Radiothon was going on and approved Saige to be a part of it since she was one of the Miracles on the radios, she had a blast interacting with other kids and being able to get out of her room for 45 minutes. December 7, Dr. Moser and Dr. Adamiak wanted to perform an impedance study on Saige. They insert an NG tube down the nose and into the stomach and to register how many times reflux and how far up the acid reaches. Thankfully she passed! She was discharged on December 8, 2018!
She has enjoyed being home with her twin sister Sawyer and big brother Brecken and being able to be a “normal 2 years old” again.
Saige made it 9 days out of the hospital, but December 17 we were back in again. Saige was brought back in for respiratory distress and two viral illnesses. She continued to get worse so it was decided to mover her the PICU floor where she was on continuous albuterol nebs, high flow oxygen, IV fluids, and continuous G tube feeds. The hospital team, Brodie, and I had the genetics team examine her to see if they could figure out why she was continuously getting viral infections and why her little body could not fight them off.
They decided to test her whole gene work up to see if she has any deficiencies, but we won’t know the results until the earliest April, the latest July. We also had an endocrinologist examine her because she has had so many steroids. Her body is not making the steroids it should be and her body is relying on the medication and becoming weak.
January 2, 2019, we drove to Fargo where we met with an immunologist who helped us get Saige on a prophylactic antibiotic that she takes Monday, Wednesday, and Fridays so her body doesn’t get resistant to antibiotics. This has kept Saige out of the hospital since her last discharge. Dr. Cleveland suggested that we re-vaccinate Saige since her body did not respond to four of the vaccines. So far, her body did accept a few of the vaccines, we are still waiting to hear on a couple of vaccines and genetics. Workup found out that she is now adrenal insufficient, so when she is ill we will have to give her a stress dose of steroids by G-tube, and Brodie and I have been taught how to give an IM injection in case her vomiting worsens or becomes unconscious.
Saige made it 5 weeks and 5 days out of the hospital, but February 7, 2019, during a visit with Dr. McKercher, she spiked a fever, her cough was worsening to the point where she would vomit, loss of appetite and she tested positive for human metapneumovirus. He took a listen to her lungs and ordered a chest x-ray to confirm she had pneumonia again and directly admitted to the children’s hospital.
Saige’s Miracle Story Born with Ea-Tef
Saige had to have an Upper Endoscopy and Bronchoscopy due to all the recurrent cases of pneumonia and wanted to check the post TEF repair to make sure there were no leaks. Which thankfully there was not!
April 13, 2019, we were told to take Saige to the Emergency room to have her bowels examined. Since Saige has a complex history, they admitted Saige and ran some tests on her. She was put on Iron drops a month prior since she has a low Ferritin and being on Iron makes her constipated and has black stools. We tried placing a suppository and that did not do much, gave her fluids through her G-Tube, and instantly vomited, since she is also adrenal insufficiency her temperatures would fluctuate high, low, and normal until we gave her the stress steroid. They also started to give her higher doses of MiraLAX to help soften so she was not straining too hard. The Dr’s then decided to run a stool sample and that came back positive for rotavirus. We spent yet another holiday in the hospital. Easter. She continued getting fluids and she got to the point where she would finally eat and drink on her own so that the IV was able to come out and was our ticket to come home on Tuesday, April 16th, 2019.
Late July 2019 we were out with friends at a rodeo and one of our friends had noticed that Saige had a lump central on her neck. I called our primary right away and they said that we should enjoy our family trip to Florida were Saige’s Makes a Wish to become a Princess at Disney World. After that amazing first family trip was over, we were sent to get an ultrasound of the mass and told to go see ENT. We met with the ENT dr and he thought it was 1 of 3 things, but that it needed to be taken out soon.
Aug 28th, 2019 Saige had surgery to remove the mass on her neck which came back as a dermoid cyst and we didn’t need to spend any time in the hospital.
Saige made it 4 months out of the hospital, but on January 7th, 2020 she was brought in my ambulance due to low oxygen, low fluids, fast heart rate, and RSV for the first time. She was brought straight up to the PICU where they gave her high flow and was able to relax comfortably; she was directly discharged from PICU to go home on January 12 2020 so she didn’t catch any other virus that was on the floor.
February 18th, 2020, Saige was yet again admitted to the hospital for fever, low oxygen, fast heart rate, and turning into rhinovirus and enterovirus, which landed her in the hospital for only 5 days.
April 2020 we are hopeful to get to go to Denver CO to get a second opinion with her respiratory failure, chronic asthma attacks, and low immunity. While in Denver they hope to do: Ct of the chest and sinus, chest and neck x rays, bone age and density, allergy testing, laryngoscopy, bronchoscopy, bronchial challenge, ph probe, exercise challenge, endoscopy, EKG, nutrition therapy, and speech treatment with many more to come as we go through the 10-day outpatient treatment.
Since Covid 19 hit in March 2020
we were not able to attend Denver due to state closures places shutting down to out of towers, so we are hopeful we will be able to go there soon!
June of 2020 we were starting to notice when Saige would eat that she would choke and spit up her food or beverage up which isn’t too normal for her we checked things out and talk with her GI Dr. Her Dr. suggested she have a video swallow test and an esophagram done which showed no stricture or concern.
July 30th, 2020 Saige had a surgery with Dr. Munson to take a 1.1 cm lesion under her right eye with layered closure and Dr. Adiamaik did an upper endoscopy with biopsy, which biopsies came back stating that Saige has a Gastric Inlet Pocket. She wants to try a treatment called Plasma Laser Therapy.
We received wonderful news on August 4th, 2020 that we are able to go to Denver, Co to get our second opinion August 24-Sept 4th 2020.
She will have ongoing treatments, therapies, and Dr. Appointments in the future but our daughter is a fighter and will continue to fight. Her battles are not over but we take it day by day and thank God for every minute we get to spend with her. She is our miracle!