Gracyn’s Story

Written by mom…I’ll give a little back story on my pregnancy first.

Gracyn’s story starts with us finding out we were expecting our 4th child around 7 weeks along. The throwing up gave it away but this time it was the worst it ever has been. I lost 10 lbs before my first appointment and would eventually lose just over 20 by the time it started to go away. I was going in every 3 days for IV fluid infusions just so I could function as a person, wife and mom. I was diagnosed with Hyperemesis Gravidarum, fancy name for severe morning sickness which really was 24/7 sickness. I wasn’t sure how much more I could take but the throwing up pretty much stopped right before our 20 week appointment. The anatomy scan was great and walking in Kade and I already knew we were having another girl, just felt it. Que 15 weeks of pregnancy bliss. At 35 weeks, I thought I was going into labor but like how didn’t I know this was my 4th baby. I went to labor and delivery to be checked and because of concern for my water leaking they ordered an ultrasound. The tech talked to me the whole time and then just stopped so without saying it she said it all, something was wrong. We ended up staying in the hospital for a few days as the Doctors tried to convey the findings. Diagnosis #1 Pericardial Effusion, Diagnosis #2 Hydrops. One was treated and 2 was fatal. I went from thinking I was about to bring a beautiful baby girl home to if she survives labor she will pass shortly after. It was heartbreaking. Of course it was over a holiday weekend in May so the high risk Dr wasn’t able to see us till Tuesday. We drove to Boise thinking the worst only for the Dr to tell us that she had neither of those scary things but she was very small for her gestational age. She was 6 weeks behind only measuring 29 weeks when I was 35 weeks. For the next 3 weeks I went every 2-3 days for a non stress test and fluid check. The contractions were getting stronger and closer at this point. I tried to tell kade I was ready to go to the hospital the Saturday night before she was born and he said, “No, you’re fine” and rolled over and went to bed. So I did. Tuesday night the contractions ramped up and at 6 am I woke him up and said, “we have to go now!” My mom met us at the hospital and took the girls and I waddled in. I got into a room and they asked how fast my labors are and I casually said “I usually only push like 1 set of contactions”. The nurse checked me and I was at a 9!!! Like holy cow, with the other girls I was getting an epidural at a 3. Its amazing how fast people move when a baby is unexpectedly almost here. There was no time for an epidural but I was able to get a spinal block. Thank goodness 🙂 Gracyn was born under an hour later. She was laid on my chest for about 30 seconds before the NICU nurses rushed her away. She wasn’t crying and I was getting desperate to hear her little voice. The nurse made some off remarks about how she was moving and it crushed me. I’ll never forget how casual she was about it and how she made Gracyn sound “damaged”.They moved her to the NICU and kade tried to tell me everything was going to be okay, it wasn’t.

Gracyn Ruth Searle 5 lbs 6 oz 18 inches born Wednesday June 23rd 2021 at 7:04 am

The seizures started immediately. Looking back we now know she was having seizures before she was born. The seizures were stopping her heart so the nicu doctor immediately called for life flight so she could be transferred to Boise. Hours passed before we knew if she was going by airplane, helicopter or ground ambulance. And then all of sudden, the special maternal and baby team from Boise was there to get her! No one can prepare you for the emptiness of watching your newborn baby and husband fly away without you. Her heart stopped again in flight for 6 seconds but she brought herself out of it. It would be 5 days before they could get her heart to stop stopping during the seizures. My dad picked me up at midnight and raced me to Boise. I still don’t know how or why they let me out after having a baby less than 12 hours before but they did. (More on that in a bit) I got to the NICU in Boise to see tons of people coming and going trying to keep my little girl alive. I knew they could save her here if her heart was the problem. Kade and I spent the night on a make shift cot in an extra supply room that first night in the hospital. We didn’t get much sleep and quickly learned it was going to be our new normal.

They didn’t have any answers for us that next morning and one of the first doctors we met with was a genetisist. She highly suggested that because of the early onset of the seizures that we do a full genome sequence to find the cause of them but those results would take weeks even on the fast track. So Kade and I got our blood drawn and Gracyn had hers done. Those samples where flown to Wisconsin to a special genetics lab. In the meantime, She was hooked up to an EEG video monitor machine 24 hours a day to capture every movement and every brain activity. When we met with the neurologist for the first time, I felt like he was not really detailed in what was happening with her little brain and I needed to know concrete answers. They didn’t have them. It was a huge waiting game until those genetics came back.

We decided I would stay with Gracyn and Kade would go back to work on Monday. My mom came on a Tuesday to be with me for support. Our social worker Brandi, got special permission from the NICU director and hospital for my mom to come up to the NICU. It was strictly closed to everyone but parents. She got to meet Gracyn for the first time and it was very emotional! Brandi also helped Kade and I be able to stay at the Ronald McDonald House just 2 blocks away from the hospital! My bleeding really started to increase and I passed a large piece of tissue. My doctor in Twin called me to check on Gracyn and I, perfect timing. I described what happened and he said it could be normal but to watch for certain things. Wednesday I was all alone again and just feeling so run down, I thought. I started having shortness of breath, pain behind my right knee, swollen ankles and some other things. I text Dr. Coleman and he told me to go straight to the ER. I told them I thought I had a blood clot so they evaluated me right away. Turns out I had 103.7 fever and was being admitted. I wasn’t responding back to Kade fast enough and I kept telling him “I’m fine its probably something silly” but he was worried he wasn’t with me. I ended up falling asleep so I didnt respond to him… I woke up to him standing over me in the ER asking if I was okay! Scared me! He had gotten so worried something had happened to me because I hadn’t answered his call or texts he jumped in the truck and drove to Boise at midnight! An ultrasound would show I had an infection from retained placenta and needed IV antibiotics. I spent almost 3 days in the antepardum ward recovering. Luckily, they still let me see Gracyn.

At 3 weeks old she was still fighting and the doctors were still fighting to find a medicine that would control the seizures. The neurologist came by her room on July 3rd and said he didn’t have concrete answers but that there wasn’t alot of brain activity and what was there was abnormal. After talking with Kade, I called my mom and told her the update and with in 30 minutes her and my sister Sarah were in the car driving to Boise so I wasn’t alone on such a hard day. I was crying in their arms outside of the Ronald McDonald House when a young woman walked past and then turned around to give me words of encouragement. That started a friendship and to this day I wish I could adequately express how much that meant to me.. Her name was Daycee. July 15th we got the results of the genetic testing after a delay the lab had with processing problems. Kade had just felt like he needed to be with me again so he drove up.. we weren’t supposed to get the results till the 19th and I will be forever grateful that he was there when we got the news.The genetisist, neonatalogist, social worker and Kade and I gathered in a small room in the NICU to go over the results. We would be told that she has a gene mutation on the SCN2A gene and its de novo meaning Kade and I dont carry the gene. Its totally new to Gracyn and nothing we did caused it. I needed to hear that and would need to hear, I didn’t do something to cause this many more times before I would believe it. We were told that something was wrong with the sodium channels in her brain and she had Early Infantile Epileptic Encephalopathy. She also has 2 other gene mutations, one that puts her at risk for pulmonary hypertension and another for Kleefstra syndrome (the genetics dr said if anyone put this on her chart she would take it off because clearly she doesn’t have this syndrome due to her clinical features) . It was so vague and they didn’t have many answers to our questions. I had hoped so badly for a name of a condition so I could do all the research I could to figure out how to fix her. That night in the shower like many before, I begged my Heavenly Father to save her through the downpour of tears that I hoped were muffled by the sound of the water. It would be a few days later through a conversation with a nurse that I would find out her genetic condition is called Ohtahara Syndrome, a rare form of infant Epilepsy. The nurse was mortified when she asked if I had found a support group for her syndrome and I politely said “oh, we don’t have a name of a condtion” and that’s when she started apologizing like crazy because she said there was a name on Gracyn’s chart as an official diagnosis. I was so thankful for that little slip up she thought she had done because now I had the ability to research! Early Infantile Epileptic Encephalopathy is also called Ohtahara syndrome so the RN hadn’t broken any rules.

Gracyn was also diagnosed with Laryngomalcia which is best described as a floppy airway. Up until this point she had a NG tube, getting my breastmilk. I was pumping 3x the amount of most NICU moms the nurses would say. At least I was good for that. On July 26 Gracyn was scheduled for 2 surgeries. One to fix the Laryngomalcia which was called a supraglottalplasty and then to also get a g-tube for long term feeding. I was dreading her going under anesthesia but knew she had to have these procedures if we were ever going to get close to bringing her home.

The girls got to see their baby sister for the first time not in a picture through a 2nd floor window as I held her up to the glass as best as I could with all her wires but that wasn’t enough.

Searle, Party of 6!!!

The girls waited a long 24 days to meet their baby sister! The NICU is strictly closed for sibling visitation but for days our social worker, Brandi has jumped through every hoop and found the smallest of loopholes to get the girls the chance to meet Gracyn before she has surgery! Those 20 minutes were full of happy tears and beyond special! Brandi, Bryanna (the RN) and Jesse (the RT) will hold a special place in my heart for making this happen! 💕 We got to take our first family picture!

Both surgeries were successful! August 4th was 1.5 weeks post surgery and she was 6 weeks old!! She only had to be on the ventilator for a day and a half and then back on the high flow oxygen… (we joked she was an oxygen hog) then got surprised on Monday with getting to see her whole face for the first time in 5 weeks! She was breathing room air! When I walked into her room, 13A I just stared at her as the nurse was trying to tell me something and then it hit me she didn’t have oxygen on. I was so excited I couldn’t even hear what the nurse was trying to say I just keep saying she’s off O2 like they didn’t know . All of a sudden they were talking about her going home. I couldn’t believe it! I called Kade as fast as I could!

In 42 days, Gracyn had sent home 7 little boys and 3 girls out of “her” room. She was the long termer. Some kids never had visitors and some had been there even longer than Gracyn. She liked to lay on the surfboard and thats where she was most comfortable. All the nurses knew 13A liked to be held if I wasn’t there. I would get to rounds in the morning by 8, leave every 3 hours to pump and come right back to be by her side. I wanted her to know she was loved. Kades parents and my parents switched the girls around each week so that Kade could work and I could be with Gracyn.

I sat by her bed for 6-10 hours a day and call during the night to check on her. I wanted to report each nursing shift how many seizures she had had and if any changes were going to be made. I made sure each new nurse knew exactly what Gracyn liked or what I thought she liked. Some of those nurses became my friends and some I wanted to ask for them to go away. Same with one particular neonatalogist but I won’t name him.

My home away from home was the Ronald McDonald House for the 45 days Gracyn was in the NICU. I only came home once and then to the Wendell exit once. Its been a HUGE blessing to only be 2 blocks away from the hospital. This place does some amazing things for families! My sisters started putting together a donation for the RMH. They wanted to help us and so did other people. To watch 2 mini vans loaded to the brim pull up and my family spill out was priceless! Strangers, friends and family helped put together an almost $1500 donation.

August 7th we got to bring Gracyn home! We were nervous and excited! She was like a newborn to us even though she was 6 and half weeks old. We did get to room in at the hospital to learn how to run the feeding pump and administer all her medication but still have the nurses down the hall if we had any questions. The roller-coaster wasn’t over though once we got home.

Kade and I took shifts with Gracyn through the night. With so many monitors going off and the beeping and crying and me getting up to pump in the night, no one was sleeping. The shifts helped so one of us was trying to calm her and the other got at least 4 hours of sleep. She has a high pitch cry that is inconsolable, they call it neuro-crying. I know she is exhausted and so are we!

Within the first week of being home from the NICU we had to take Gracyn to the ER twice. The first time she got too much of one of her medicines and needed to be watched for toxicity and 2 days later had to go back because her g-tube was infected. That was August 12th, Kade and I’s 10th Anniversary.

The weeks since we have brought her home have been nothing short of a blessing and exhausting at the same time. Sept 3rd we had to take Gracyn to see her neurologist and GI doctor. Kade asked how I felt being back in Boise for the first time since she left the NICU and I calmly said I was good as we approached the exit. Minutes later, I found myself trying to hide my tears as we pulled into the Extra Mile Chevron gas station right next to the Ronald McDonald House and hospital. For 6 weeks, I walked past that gas station sometimes 6 or 7 times a day, always seeing what the new gas price was for that day and what weirdo I was going to see. It was my routine and my Dr. Pepper pit stop. I wasn’t prepared for the emotions the gas station brought up. I was right back in the trenches hoping I was going to hear any bit of good news about our baby when I went up to the NICU and that day good news from the appointment with the neurologist. But even with time the answers or lack of havent changed. Sept 27 we checked into the Ronald McDonald House once again for her MANY doctors appointments and I oddly felt at home. I already knew all the rules and to check for any cool stuff in the grab in go area! It was weird not going to #202 but #209 was still beautiful! The artwork in the rooms is awesome! The ladies still knew us by name and gave Gracyn the cutest blanket. I’m so thankful for that gas station and for what the Ronald McDonald House does for families!

Some days just don’t go as planned though! Gracyn was struggling at home Sept 18 but her O² was 94-95% and no fever. Things changed fast and I knew I needed to take her in. She had a 101.6° temp and working too hard to breath. After a negative (rapid) Covid and RSV test, they did a full respiratory panel and she was positive for RSV plus had a UTI. Low flow oxygen, antibiotics, fluids and more seizure meds helped her get through. She is a fighter! She got to come home from the Twin Falls PICU on Sept 22 with low flow oxygen. She needs just a whiff to help her out.

Hardest day so far!!! Saturday Sept 25 I thought we lost her. The days leading up, Gracyns seizures were increasing and there wasn’t a reason. Saturday they just wouldn’t stop! The day before the neurologist had us give her a loading dose of phenobarbital and it helped but not enough, the seizures just kept increasing. I called again and Dr Foy said to give her another loading dose and permanently increase the med. By the time we got to the ER on Saturday she had had 67 seizures and turned blue/grey in my arms at home. We loaded the girls up and I held Gracyn limp in my arms as Kade sped to the ER. I will never forget the ER nurse running into the parking lot to take her from my arms and her sisters desperately trying to say their goodbyes. I didnt think she was going to make it. She had over 125 seizures in 24 hours. The PICU Dr. sat us down and wanted to know what our plan was for her. We told her we want quality over quantity. We asked to be released on Sunday so if she was to pass she could be surrounded by family. Once home her seizures started to decrease.

Oct. 4th our family’s gathered in our home as Kade gave Gracyn a beautiful blessing. We blessed her that she might be able to smile and interact with us and know that she is loved and more. It was very special.

Sleep is a mystical unicorn, unseen and unheard of at our house. The crying is non stop and my heart breaks that I can’t comfort her. I wanted answers so we meet with GI and restarted Pepcid to help with reflux. She said 90% babies with Laryngomalcia have severe reflux.

We drove just over 1,000 miles from Oct. 8 – Oct. 15th for Dr. appointments. Oct. 13th we went to Primary Children’s hospital in SLC for a 2nd opinion. I hoped so badly that they would have the golden ticket but that wasn’t the case. I was disappointed that I had let myself hope that because they saved me as a child that they could could save her. She doesn’t need saved, she is already perfect. I was comforted knowing we were doing all we could for her at St. Lukes and as she got older we could explore more options like a vagal nerve stimulator.

The Oct 15th appointment was for an unplanned EEG to see if she had developed infantile spasms. This little girl is a rockstar. The activity on the EEG was not consistent with infantile spasms but it confirmed my suspician that the non stop crying and irritability was almost constant myoclonic seizure activity. In the NICU it was described as just movements but the EEG showed that they had progressed to full seizures. The large seizures have stopped, I hesitate to even write that word because I know its just a honeymoon period and the seizures will be back. Her Epilepsy is drug resistant and the prognosis isn’t good, usually around 2 years.

In the days coming we will travel back to Primary Children’s to hopefully find out if she can see and then hope she has the ability to process what she does see. She did pass her hearing test and if you talk very close to her ears she does turn towards you ❤

For now, we love on her as much as we can!

That look!! This girl is a ball of fire! I loved her honest personality! She let me know that she wasn’t going to do something and she also let me know that she liked me! haha I love her! Please pray for sweet and spicy, Ziyah and her family, be present with the ones you love and be thankful.

Little Heroes Session, written by her mama…

Ziyah Lucius was diagnosed with DIPG on April 23, 2021. Diffuse Intrinsic Pontine Glioma is a brain cancer in the Pons of the brain stem. It’s is a rare cancer only affecting about 200-300 kids per year but is also the most fatal of all children brain cancers.
On April 22, 2021, the day before Ziyah was diagnosed, she was completely lethargic and could not keep any food or liquids down. We took her into the doctor and told it was likely a virus. Later that evening her symptoms were worsening. We quickly called 911 out of fear of driving with her in the car to the hospital. In the ER they asked millions of questions and ran every test all of which were completely fine. They found a mass through CT scan that night. She was admitted to the PICU in the early morning hours of April 23rd. That morning/afternoon Ziyah had her first MRI. They were able to tell from MRI that Ziyah had DIPG. She was given steroids, fluids, and an NG feeding tube to help build back her strength and reduce any swelling or bleeding the tumor was having. It was recommended by Seattle’s Children tumor board that Ziyah receive radiation treatments as soon as possible. So on, April 30, 2021, only one week after diagnosis, Ziyah began her first treatment of radiation. She received 30 rounds of radiation therapy and finished June 18, 2021!!

At the moment Ziyah is still her spunky, fun, crazy 4 year old self. She no longer is on a feeding tube and is completely off steroids. She enjoys going to the pool, doing tik toks, and playing with her brothers and sister! She likes to pretend play princess and loves dressing up and putting on makeup. She absolutely loves spending time with family and if she’s not at home she’s with her grandparents.
We are so proud of how strong Ziyah has been through this whole journey. It has definitely been an up and down battle but she takes everything on so well and it’s amazing to see how far she has come since the beginning of her diagnosis. Currently she is waiting to receive another MRI on August 24th, to see the status of her tumor and we are praying that she receives a stable diagnosis. Then we will be heading to San Francisco to participate in a clinical trial at UCSF.
We just want people to know that it’s okay to enjoy your life in tragedy. Everyday is a challenge but we choose to embrace those challenges with positivity. Together we have grown stronger as a family and we cherish every moment to be made with our precious babies.