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The Goff Family

Baby Devereaux

Scroll down to see updates as the Goff family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Update 6/1

For our first baby, Chloe and I were having what many would consider the ideal pregnancy. There had been no morning sickness and no complications. Our world changed on March 13th when we received a call regarding the results of our 20 week scan. While sitting in an airport halfway across the country waiting on a delayed flight, we were told that our son Devereaux's heart was to the right, his stomach was midline, and that his kidneys were misshapen. With no more information than that, we were told that we would be contacted by a high risk pregnancy specialist in Tulsa, OK. One week later at the Perinatal Center in Tulsa it was confirmed that our precious baby boy had CDH, but on the bright side, closer inspection revealed that his kidneys looked normal. After moving forward with an amniocentesis, no further genetic abnormalities were found. That very day we were referred to Johns Hopkins All Children's Hospital in St. Petersburg, FL. On April 12th, just one month after receiving our life-changing call, we arrived at JHACH for our preliminary appointment with Dr. Kays and his team. One of the first things that Dr. Kays said was, ”we are going to fight, and we are going to win!” What a powerful and uplifting statement to begin this journey on! We were given a 90%-95% chance of survival, with a 20%-25% chance of needing ECMO, which exceeded our expectations based on the research we had done beforehand. His heart, although on the extreme right side of his chest appears to be fully developed and functioning properly. The hole in the diaphragm is considered large, and the stomach, intestines, spleen, and 10-15% of the liver have made their way into the chest cavity and are impeding on the lungs. Fortunately, our little fighter is still growing, measuring in the 76 percentile and meeting normal benchmarks, including practicing breathing.

Medical expenses are already beginning to rack up at the time of this writing. The funds from this grant will help us to begin covering the expenses related to our upcoming relocation to St. Petersburg including food, gas, and accomodations. Words cannot begin to express our sincere gratitude for the assistance provided by The Eden Calhoun Charitable Fund and it's donors. We want to thank the Calhoun family for taking Eden's story and making it a blessing to others in a similar situation.

Update 6/21

We just got settled in St. Petersburg one week ago. At our most recent appointment we received more information on Baby Devereaux’s expected delivery. We are currently scheduled to go inpatient at John Hopkins All Childrens Hospital on Monday, July 10th with delivery taking place the next day, Tuesday, July 11th. It won’t be much longer now! Thank you for your continued support. 

Update 7/31

Devereaux James Ray Goff came into this world fighting on July 11, 2023 weighing 7 lbs 5 oz and measuring at a lengthy 19.5". Due to a consistently dropping heart rate during early minor contractions, he was delivered via c-section and had his first procedure just over twelve hours later on, July 12th, when he was placed on ECMO.

Immediately after the surgery, his vitals began to improve, and his second surgery, his diaphragmatic hernia repair, was done the following day, July 13th. The surgery began at approx 9:30 A.M. and finished at approx 4:50 P.M. for a total of over 7 hours on the operating table. This was longer than what was expected due to complications during the procedure, as Devereaux had air in his intestines and the doctors had some difficulty placing them back into his abdomen.

That same day, July 13th, was also discharge day for Chloe. Nothing prepares you for the long walk down the hall glancing into the rooms of happy new parents holding their new babies close. It was difficult for us to drive away empty handed, however we were granted a moment of solace when we got to hold his little hands and run fingers through his hair for the first time, three days after his birth.

 As Dr. Kays told us after Devereaux’s procedure, “You aren’t out of the woods until you’re sent home.” The challenges of having a child with CDH in the NICU are an endless parade of progress and setbacks. On July 17th, blood would be found in both his stomach tube and his urine, followed by a severe case of jaundice. One week later, his bilirubin had climbed to an astounding 26 and the staff began .5-1 mL feedings via a feeding tube in an attempt to clear up the jaundice. This proved to be unsuccessful as Devereaux had difficulty holding down the small feeding. Two days later we began an aggressive new treatment called Plasmapheresis, a method of removing blood and plasma from the body by withdrawing blood, separating it into plasma and blood cells, and transfusing clean plasma into the separated blood cells and flowing the two back into the bloodstream. This process is to be done for approx. 2 hrs. each day for 5 days. For the first two days Devereaux handled the treatment extraordinarily well, however on July 29th we saw a drop in blood pressure during the process and after it’s completion. Several medications were administered and his ECMO was turned up in an attempt to bring his blood pressure up, but both were unsuccessful in doing so. As a result the treatment was cut short. Somewhere around midnight, Devereaux became very agitated and in doing so disrupted his ECMO circuit. This caused all of his vitals to come crashing down, undoing much of the progress that had been achieved. The air that had been in his lungs is now gone due to swelling and fluids, including blood that are now present in his respiratory system.

However, just like a rollercoaster, with every dip comes the promise of another lift. At the time of this writing, Devereaux is now 20 days old and the light of his mama and daddy's lives! The blood has disappeared from his urine, and today, July 31st, we once again got to enjoy his beautiful blue eyes looking back at us. Devereaux continues to inspire and amaze us as his parents everyday. In the short time since he took his first breath, this little warrior has gone through more than most will experience in their entire lifetime. Each day presents a new set of challenges, but the three of us are grateful for each new day we're given. The fight is and always will be worth it.

Update 8/27

August, much like the month before it, was filled with both highs and lows. The month started with most of our extended families leaving St. Petersburg and making their way back home. The sadness of those changes were quickly eclipsed by excitement as preparation began to take Devereaux off of ECMO. On August 9th, we took the largest step in our CDH journey to date, and Devereaux was successfully decannulated after four long weeks.

Once stabilized and off of ECMO, we began the process of weaning him off the ventilator. Like a child who was tripped up at the beginning of the race but still determined to win, Devereaux hit every goal set before him as he sprinted toward the finish line of extubation. On Monday, August 21, Devereaux's breathing tube was removed and we finally saw his entire face and heard our son cry for the first time. This simple pleasure is one that most parents hear the day their child is born, harolding their arrival into the world. Devereaux handled everything like the little fighter he's proven to be time and time again, and the countdown to hold him for the first time began.

We set our alarms and went to bed early in order to be at the hospital by 7:30 a.m., the earliest available opportunity to hold him. Unfortunately, our continuing CDH journey had other plans. With his breathing tube removed, Devereaux had found comfort in his pacifier and would often cry without it. The nurse attending to him overnight was caring for two CDH babies, and while she stepped out to check on the other child, his pacifier fell out of his mouth making him inconsolable. Three hours and three PRNs later, the respiratory therapist decided it best to reintubate him. 

Unmet expectations are one of the most difficult facets of having a child with CDH. Instead of holding our child for the first time, we found ourselves coming to terms with yet another set back. In times like these it's difficult but important to remember that progress looks a little different to everyone, and we're still making progress. Devereaux has already begun weaning off the ventilator for a second time. With the latest information available to us we expect another attempt at extubation sometime next week. 

Update 10/1

Please know that you and your family are in our thoughts and prayers as you remember your beautiful baby girl. I also want to apologize for being late in getting you an update. Sept. like so many months before it ended with a bang. Due to Devereaux’s continued reflux, he had Nissen/G-Tube surgery and the recovery has been rougher than any of us expected. I'll write up a full update and try to have it in your inbox by this evening. In your previous email you said that if we'd like to still be considered for monthly grants through ECCF, we could reapply and potentially receive an additional 2 months of grants. At this time, we still don't have a discharge date and we'd like to explore that option if it's still available to us. Again, thank you for your continued support and understanding. We're hoping for a better October. 

Update 10/1

On August 27th Devereaux was successfully extubated for the second time and as of this update over a month later, it appears to have stuck this time. The following day we were permitted to hold our baby for the first time, nearly seven weeks after his birth. Words simply can't do the moment justice. 

As August ended, September came in like a hurricane... literally. When St. Petersburg was issued a hurricane warning due to approaching Hurricane Idalia, Johns Hopkins All Children's went into lockdown for the duration of the storm. This meant that no one was permitted to enter or leave the building until after the storm had passed and we were given the all clear. Chloe and I took this opportunity to stay close to our baby boy, and to enjoy our new found joy in holding. It was easy to forget that there was a tropical storm raging outside. The storm passed, and fortunately the impacts were minimal in the Tampa Bay area. 

The following weeks continued the CDH rollercoaster of various ups and downs. Within the first week of September, Devereaux had spiked a 102 degree fever, developed a rash, and had his first feedings. Thankfully his Mimi (my mom) was able to visit that week to hold and give him snuggles for the first time. As our feeding efforts continued, so did the complications. Devereaux was never able to hold down any more than 25 mL, and even that was a struggle. Throughout the process, he gradually became more irritable, agitated, and inconsolable resulting in him being put back on CPAP which he is still on at the time of this writing. Doctors and nurses believed that these attitude changes combined with his recurring fever and various other symptoms to be a sign of withdrawal. It was decided that he be taken off of Fentanyl, and that it be replaced with morphine. 

On Sept. 18th Chloe and I woke up to a call from the hospital informing us that Devereaux was once again fevering and inconsolable. When we arrived at the hospital they were attempting to draw blood labs for a second time. Chloe and I noticed that Devereaux wasn’t himself. After a second failed attempt, I came to the bedside and picked him up. We noticed that his head was jerking quickly back and forth, his eyes were rolled back, and his extremities were drawing up. He’d grown quiet. It was at that moment that we realized that Devereaux was likely having a seizure. I asked the nurse to call for a doctor immediately. Devereaux’s temperature reached 103.8 degrees. He was covered in bags of ice until a cooling blanket arrived. Slowly as his temp came down he became more cognizant of his surroundings. 

Being as resilient as he is, it didn't take Devereaux long to recover from this setback. One day later he was back to smiling and enjoying snuggles with Mom and Dad. Unfortunately for us as parents we didn't bounce back so easily. The event left both of us visibly shaken. Chloe and I felt that it was time to make some tough decisions in the best interest of our child. I had recently run out of FMLA at work and after a call from HR I realized that career termination was the only course of action unless I was willing to return to Oklahoma and my job. This put us at a difficult crossroad, but ultimately we decided to remain in Florida. We will be living here for the next couple years in order to be closer to Johns Hopkins All Children's where they are familiar with CDH and Devereaux’s unique medical condition. 

On Sept. 29th, Devereaux went in for his Nissen/G-Tube surgery. The short ride to the operating room was one of the first times in his life that he’s left his hospital room. He entered the OR smiling at his surgeons, nurses, and medical staff. We received the text message that his procedure had begun at 8:30 A.M., and in typical Devereaux fashion, a surgery that was expected to be 2-4 hours turned into a 5 hour operation. The recovery process has been a bit rougher than any of us expected. Devereaux has been placed on regular albuterol breathing treatments, an ng tube, and his PEEP has been turned up from four to ten. Doctors continue to monitor his condition closely, and have decided to hold off on feeds until he is on less respiratory support.

When they say that CDH is a marathon and not a sprint, they're not joking!

Update 10/26

October began with what was supposed to be a quick trip to Oklahoma to pack up our belongings for our upcoming move to Central Florida. However, the process of moving your entire life halfway across the country isn't a short one. After several delays, I'm finally back in Florida with my beautiful wife and happy baby boy. While I was away Devereaux's recovery from his Nissen/G-Tube surgery continued. In a little over a week, he went from CPAP to regular nasal cannulas, had his PICC line removed, and most importantly received a window for discharge! Chloe and I enjoyed giving him his first "real" bath and even doing the car seat challenge to prepare for the big day. Normalcy was slowly but surely beginning to reintroduce itself into our lives. 

Yesterday, October 25th we left the hospital while being cheered on by the doctors, nurses, and medical staff who’ve been a large part of our lives over the past several months. It’s in no small part due to this incredible crew that we were able to take Devereaux home. Many of them will always hold a special place in our hearts. This long awaited day brings all new meaning to the phrase "home is where the heart is."

The Goff Family
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