Just a Boy Named Noah
Hello there. I am the mother of Noah Duran and this is the story of his journey. On December 1st 2022 is when we found out we had conceived a child. At 20 weeks gestation, the ultrasound showed that Noah had Congenital talipes equinovarus deformity of both feet. Sounds intimidating. But, in simple words it is Clubbed foot. He was already an over achiever and had it in both feet. With that same ultrasound the doctor notices a thickness of his Nuchal Fold in his neck. The doctors requested we get an amniocentesis to check for other genetic disorders but, we declined. If our baby was going to be born with anything else the doctors assumed, we were still going to continue with our pregnancy. We did not need to know any sooner. We loved our baby regardless. Noah was born on Friday, July 28th 2023 at 3:41am. He was having trouble breathing, so a team of specialist were called into our room and gathered around his tiny baby station. They stated that he had something called Stridor. They took him up to the NICU in matter of minutes, it felt like. When I was finally able to see him (later in the day Friday), he was attached to a CPAP to assist him in breathing. Saturday morning we got a call from a doctor and she stated that Noah had been working too hard breathing with the assistance of the CPAP. So she had to place a breathing tube and that had stabilized him. Seemed as though news kept getting a little worse each day to a moms ears, but I clung to my faith. We had lots of family and friends praying for him.
When it was time for me to be discharged from the hospital, it felt very surreal. I came to the hospital with my baby and now I was leaving without my baby. The next couple of days we were preparing for Noah to be transferred to Roseville. Those days went by and he was transferred to Roseville Tuesday August 1st, 2023. The purpose for that transfer was because they have Pediatric Specialists in Roseville as the hospital we were at, did not. When he was transferred to Roseville we met with a team of doctors that had a plan in mind for Noah. They not only wanted to remove the breathing tube safely but, they also wanted to take video and pictures of inside of his airway to see if there is any obstruction that was visible and could possibly be corrected. They also stated that there was a 50/50 chance that Noah would come back to the NICU with the tube placed back in when returning from the Operating Room.
On August 8th, 2023 the breathing tube was removed and he was placed on a CPAP and seemed to be thriving. Each day he progressed and after so many days they continued to lower his oxygen. We were all excited when he went from 100% to 21%, and then he no longer needed the additional air and could breathe on his own well. With the breathing tube and the CPAP he also had a NG Tube (Nasogastric Tube) to assist in his feedings. When we were able to feed him by the bottle we were so excited. He had a mixture between bottle and NG tube. He progressed with his feedings as well. He soon had an eye exam and the doctors concerns were a possible detached retina in the left eye. Again, more news for this mama’s heart. So, the next step was to be transferred, yet again, to another hospital. In another town. While we waited to be transferred we took more genetic testing, my husband and I. When all of our genetic testing came back they took us to a room to discuss the results for Noah and myself. Noah had a partial chromosome deletion and duplication of his chromosome 16. In medical terms it is 16p13 chromosome deletion and 16p24 chromosome duplication. So, the deletion is what caused his clubbed feet. My results showed that I have a partial chromosome inversion of my chromosome 16. In simple terms that means part of my chromosome 16 is flipped upside down. So the amount of guilt I felt was heavy. But, you can’t help your own genetics. It was really out of my control.
The days leading up to his departure from Roseville he was off of the assisted air and NG Tube. His face was clear of tubes and tape. We were overjoyed. He looked like a newborn again and still so small. After being in Roseville for two weeks, Noah was transferred on Tuesday August 15th, 2023 to Benioff Children’s Hospital in Oakland, CA. He arrived in Oakland at 1:18am. The nurses called when he left Roseville and when he arrived in Oakland and my phone was on Do Not Disturb, unfortunately out of habit. I never changed it once I went into Labor. I arrived in Oakland around 11am. When I arrived to the NICU I was shocked that he again had the NG Tube back in. I asked the nurse, who had received him early that morning, why the need for the feeding tube. He just had nothing yesterday in Roseville. How much could have possibly changed in less than 24 hours. All the things apparently. He also began to make a sound they called Stridor. They used that term since he was born. The doctors have stated that Noah has a narrow airway. To top this whole day off, the office of the doctor who was scheduled to do one of two eye surgeries for Noah, called and said that they have not received authorization for his scheduled surgery. That was scheduled for the very next day. The woman stated that I needed to call my insurance. Between arriving to the NICU and receiving this call I was holding Noah for approximately 20 minutes. So, I had to leave the NICU to figure all of that out. I had no clue where to start. Talk about a nightmare. Kaiser said it was not their approval and that it had to be Medi-Cal. Then Medi-Cal said it was Kaiser since Noah was still covered under my insurance for the first 30 days of life. Absolutely running around in circles. Why can’t these two insurances talk to one another or at least get their facts straight.
So, soon after he arrived in Oakland he not only had the NG tube back but, also the CPAP. At this point, I felt so defeated. So overwhelmed and so very alone. I finally got in touch with a financial advisor from Oakland Children’s Hospital and she was going to work her magic. I was in the cafeteria, at the window and I just cried and then prayed with my whole heart. I also couldn’t stop thinking about why would one hospital make a huge transfer to another hospital without knowing if all the paperwork was in order. Later that day the financial advisor called me back and stated that it was all corrected and Kaiser was electronically sending over the authorization for his surgeries. Let me tell you, the relief I felt was incredible. I cried all over again. But, this time it was happy tears.
The day he had his first eye surgery we were all very nervous. My husband and my mom were at the hospital with me. I loved that my mom prayed over Noah before he left for the OR. When he came back to the NICU he looked like a pirate. He had one patch over his left eye. The doctor said that Noah did not have a detached retina, we were so happy to hear that news. Five days later he had his second eye surgery for his right eye. When the doctor came to check his eyes after so many days healing he said that Noah would have peripheral vision in his left eye and some vision in his right. We don’t know exactly how much vision he will have until he gets a little older.
August 30th is when he received his first soft casts. The casting was to correct his clubbed feet. These casts were changing every week. After about 4 weeks his casts were changed to hardened casting. The downside of the hardened casts was that they would have to be cut off each time to be replaced. The soft casts were rolled on and unraveled each time they needed to be changed. It was a little longer of a process each time. The doctor requested one time to not have a diaper fully on. That was a big mistake because Noah has pretty good aim. He peed all down the front of the doctors medical scrubs. My mother in law had purchased these “Tee Pee, Pee Pee” covers. They were small and covered his private area while his casts were being changed. Too funny but they worked.
Now on September 6th, he had yet another procedure. This time it was for his esophagus. Stridor had made its way back and with a vengeance. Before it was a low sound he made when breathing but this time it was super loud. So loud the resident doctors could hear it from across the room. I can’t remember how long it lasted but before your surgery the doctors wanted to place a tiny microscope in his mouth to see any obstruction before they scheduled the surgery. They noticed a small portion of his esophagus having some loose tissue. His surgery was scheduled and it had helped tremendously. But, again after each surgery he came back intubated. Very hard to see your child like that but, I know it’s what is best for him.
September 7th Noah had an MRI scheduled. The doctors wanted to check his brain and spine for any abnormalities. We wouldn’t get the results until the next day. The next day came and your dad was so impatient with worry, so he called the doctor to ask questions as to what they found. When my husband called me with the results his voice broke. He said the doctors found a mass on his brain. Come to find out there was a few masses. It was diagnosed as Tuberous Sclerosis. Another genetic disorder. But, the doctors reassured us that it was benign and not cancerous. It would be monitored throughout his life and if needed, medication could shrink it. They also took an ultra sound on his kidneys soon after and found multiple cysts on his kidney’s. These are all symptoms of his chromosome deletion. Something he has no control over.
On September 11th they ran an EEG test on you over night. Neurosurgery wanted to check for seizures because of your diagnosis of Tuberous Sclerosis. That was a really hard time for me. Trying to sleep seemed near impossible. Waking up in the middle of the night, saying another prayer and going back to sleep. When we received the results of no seizure activity we were so relieved. It is always hard to wait for results and also wanting the best outcome.
September 13th you had your soft casts removed to take an ultrasound on your hips. Then new soft casts replaced. The doctors were concerned about your hips and the ultrasound had showed a little hip dysplasia. Yup, another diagnosis added to the list. With this new diagnosis the nurses were instructed to lay you either on your back or stomach with your legs propped in a frog position. If this method didn’t help they said they would use a device called a Pavlik Harness. It was to keep his legs in the frog position. But, because he had casting it weighed his legs down in the position needed. So that was a win and definitely positive news for this outcome. The hip dysplasia was resolved with this technique.
September 22nd is when he got his first hardened casts. They were white and very chalky. They left a mess on his bedding all of the time. We were able to write on them now and we sure took advantage of that. I brought a zip lock bag full of permanent markers. The nurses and some doctors also signed his casts. They were just as excited as I was to doodle on them. When it came time to remove them my mama heart couldn’t handle the thought of the removal so I asked to step out. The technician who was there to remove them said it was a quick process. So, I looked at Noah and agreed to stay. We were going to support each other. The technician had me place Noah diagonally on his crib and he asked me to just cover Noah’s ears as the sound of the tool would be loud. Noah did phenomenal. Way better than I did that’s for sure. My anxiety was sky high. Noah just laid there, looking up at the ceiling. Probably wondering what that vibration sensation was on his legs. When the technician was done he said he was impressed with Noah. Most babies and young children tend to cry he said. But, not Noah. That is the kind of calmness I wish I had at times.
October 16th he had another surgery. This time it was for his Achilles heels. The operation is called a Tenotomy. This surgery was to cut his Achilles heels to give his foot more flexibility. When the doctor explained this to me I was in such amazement. She stated that she will go in at the back of the heel and make a small incision and cut the tendon. Then after a while the tendon will find its way back and reconnect itself. Our bodies are definitely divinely made. Of course he came back to the NICU intubated. Can’t leave that part out. It happens every time he has surgery. It only lasts a day or so and they removed it. Noah also came back with new casts. They were red. His dad chose the color. Which worked out great because his night nurse made him a Red M&M costume for Halloween.
October 19th he had multiple surgeries happening. He had two inguinal hernias repaired. The hernias were caused from excessive crying due to the eye surgeon checking Noah’s eyes with a speculum. His eyes were numb but still didn’t like what was happening. But, they needed to be checked from his eye surgeries he had in August. He also had a gastrostomy where a G-tube was placed. He was recovering well. With the next few weeks the nurses had us practice placing the connector piece to the mickey button on a baby doll. It was a test we had to pass in order to be discharged. The doll came with a mickey button, a connector piece and a syringe. The syringe was to practice giving medication and cleaning the residue from the formula so that it did not get clogged. The nurses then allowed me to attach his connector piece to his mickey button and to press the buttons to start and end his feedings. So I had a little more hands on practice. They did all of the measuring and pouring the formula into the bag because it had to be documented. I was in so much disbelief that I had all of this to learn before we were being discharged. It seemed overwhelming and I was already having anxiety. I am familiar with G-tubes but this was very hands on 24/7 compared to the 8 hours I had with clients at day program. The nurse we had the last couple of weeks said that I would be fine. I practically do everything now that I would need to do at home. I ask all of the questions any parent would ask. She said it becomes a piece of cake and just routine after a while.
During our time in the NICU a Physical Therapist came in periodically and we sat on the floor with a mat and she showed me how to help Noah sit up and use tummy time with his casts on. She was amazing. Noah loved the view from the floor. Especially looking out the window. It was definitely a different perspective for him. We also had an Occupational Therapist come in and assist with his feeding by mouth. He had taken 2 ounces by mouth in Roseville and once we came to Oakland that had changed. By the time we were discharged from the NICU he was allowed 20mL by mouth. That is less than one ounce.
November 2nd Noah had another EEG scheduled. Again those results showed there was no seizure activity. More happy news. He was just thriving every day. November 8th is when his casts came off. He was finally done with all of the casting. Now it was time to move to boots and bar. It is medically called the Ponsetti Method. I already knew this was the plan to move to once the casting was over so I had purchased a padded bar cover from Etsy. It was personalized so it had his name in BOLD. His doctors and nurses loved it.
We were told that we would be going home soon but they needed to do a car seat test. This test would show if he would be safe to go home. They would have to test him in his car seat and if his oxygen level did not saturate he would be able to go. They did the test on November 9th and he passed! He looked so small in his car seat. How I originally imaged him coming home after he was born.
Before we were able to be discharged the pulmonary doctor came in to give orders as to see if he was to go home on .75L of oxygen or if he could go home on .5L of oxygen. But, either way he was going home on oxygen. We had to have oxygen and a pulse ox sent to our address beforehand. They needed me to have the pulse ox charged and an oxygen tank ready for the ride home.
November 13th we were preparing to leave the next day. Talk about a long awaited departure. To think of all of the people who have come in contact with Noah. Both physically and those far away through social media. For everyone who has been a part of his journey. Just amazing. Yes Noah has a long road of the many, many follow ups. But the day has arrived. He goes home tomorrow.
November 14th Noah is finally getting discharged. He is officially graduating from the NICU. Every parents hope for their little one. All the babies we seen leave, it now our turn to roll out. Literally in his car seat, in a hospital stroller. We had his oxygen tank, his boots & bar on, his feeding pump in a back pack. I was so excited to leave that I forgot the training we just did, that morning, on how to use the feeding pump. The paperwork was buried in the trunk of the car somewhere in all of my stuff. I had to call the NICU so they could pull his chart up and tell me what the Rate and Dose was. It changes at night for his continuous feeds and that was the settings it was left on after the training. After 110 in the NICU, Noah was officially on his way home and our family was complete.
Resources I had:
Social Workers can assist with any questions or information you need for you or your baby. They provided Gas Cards (upon request), Food cards, Transportation, Housing.
Financial Advisors can assist with any questions or information regarding medical bills or authorizations
Family Resources Center, on the 2nd floor of the hospital, provided two meals a day Monday-Friday. Most of the time they had two options. A meat option or a vegetarian option. This was on a first come first served basis. They also provided computer access, printers, snacks, massage chairs and any information you needed. They were a big help for me when I needed paperwork printed from Roseville Kaiser.
During our NICU stay in Oakland, there was not a bed for a parent to stay you had The Family House or the Ronald McDonald house to stay in, if they were not full. I think in that case the Social Worker would put you in a hotel. Either one you had to have a referral from a social worker in order to be accepted.
My experience was at The Family House around the corner from the hospital on Dover St. It was in walking distance.
They provided separate bedrooms a full kitchen with some pantry items you are welcome to and shared bathrooms. They also had coin operated washers and dryers, a family room with cable, Wi-Fi, a Gym and a playroom. Due to Covid the playroom and gym had been off limits. It was kind of like dorm living. They serve breakfast and dinner. They still had rules for you to follow and it was really nice being there in the situation a lot of families were in it was one less burden financially. They do not charge to stay there but they do ask for donations. Not immediately but if you are able and if you are not able they do not pressure you. While staying there my family donated items off of their wish list. We stayed in a hotel a couple times while maintenance was happening at the Family House. It was a bit of a drive that time. But, still no burden on the parents in need. The Social Workers also provided Ubers or Lyft for those who needed it to get back and forth to the hospital.
Well that was Noah’s journey and our experience on this roller coaster of emotions. He is healthy and thriving.
