Emryn's Journey

I thought that I would try and write about what happened towards the end of my pregnancy and how Emryn is doing currently.

During the 34th week of my pregnancy, that Tuesday, I had an appointment with my MFM, and Emryn was not acting normally. She wasn't having as much of a reactive strip, meaning that she wasn't moving as much. She had to be "woken up" 3x while I was on the heart rate monitor, and then once during the US section. That was the first time that she hadn't been extremely active.

At work, I had been trying to work with my boss on limiting the number of patients that I would see each day. I had noticed that my BP readings had been slowly increasing. I had already been diagnosed with pre-eclampsia, hypothyroidism, and polyhydramnios. The limit somewhat existed, and it did help me feel a bit calmer at times.

I had asked Tim for a blessing that evening, for guidance concerning the pregnancy and next steps in life. I got a surprising response during the blessing. I was told that I was about to be in the midst of a trial, but to seek God, look for peace, and that Emryn would be fine.

Wednesday went normally. On Thursday, I woke up with a headache. Important thing to note, is that I had been having a headache for 4 weeks straight, on the right side of my head, at a pain level of a 2/10, pretty constant. That was what had initially caused me to ask to recheck for pre-eclampsia, and have my urine be consistent with that. That morning, my headache had worsened, and was a 4/10. My BP that morning was higher as well. I felt "off". Now, as a doctor, I hate hearing vague expressions like that from my patients, because it doesn't really help guide me with what they are experiencing. However, that was the best explanation for how I felt. I drove to work, not feeling any better. Once my MA arrived, I told her how I was feeling, and she encouraged me to call my OBGYN and find out what they recommended that I do. I spoke with the nurse, she heard about my worsening headache, my higher BP readings and my overall feeling of unwell, and she advised me to go to the OB ER. I then called my boss, and he encouraged me to do what was advised. I told my MA that I was leaving, and she told my patients, who were already gathered in the waiting room, that I was leaving to go to the hospital.

Once at the OB ER, they checked my BP and the first two readings were 180/90s. The nurse then got the hospitalist, and I was told that I was going to be admitted to the hospital, and that I would be having my C-section later on that day. They weren't going to do it immediately because I had had a small breakfast and I needed to be NPO for at least 8 hours so I wouldn't get sick during the surgery. I then got an IV placed, and was given IV labetalol. I then had to call Tim, it was just past 9 in the morning. Flynn had been dropped off at therapy, and Preston had been dropped off at drama camp. My folks weren't due to arrive until August 15th. Tim then had to try and coordinate children. He got in contact with our sister-in-law Jazenia, who was willing to go to our house to watch the boys and spend the night, so Tim could come to the hospital. Tim got ahold of my parents, and they rescheduled their flight to arrive on Saturday. Tim was able to pick up the boys and get them to the our house. He arrived by about noon, with my estimated c-section time of 4:30pm. I called my MA and my boss, and told them that I was admitted to the hospital and would be having my baby later on that day.

I then met a bunch of people very quickly at the hospital. A few nurses, CRNA, and a PICC nurse. I was placed on IV magnesium since I was having pre-eclampsia with severe features, and they wanted to prevent me from having a seizure. IV magnesium absolutely sucks. It feels like fire, a burning sensation, makes you feel very warm, and achy, like a minor flu. I was given the IV labetalol multiple times, and my BP levels were still not well controlled. I was also given a dose of steroids to try to help with lung development of Emryn. I was brought into the OR to get ready for the C-section. They had issues placing my spinal, it took about 10-15 minutes before they were successful. I broke down crying, in anxiety and stress. Once the medication kicked in, I laid down on the table and calmed down. Tim came in, and the C-section started. During the c-section, I had some nausea, shortness of breath, but then things improved. Emryn came out, and was brought over to the warmer. She was born at 5:25pm, at 34 weeks 6 days gestation.

At the warmer, it was noticed that Emryn was having issues with breathing. The NICU team had been in the OR the whole time, and they came over, brought her quickly over to me to have me kiss her head, and then took her to the NICU. Emryn was placed on CPAP, given some surfactant to help her lungs develop better. They got an x-ray, which showed respiratory distress syndrome. The NICU doctor was worried that he might need to intubate Emryn if she didn't improve.

During the c-section, my OB told me that my uterus was starting to window pane, meaning that the uterine walls were so thin that they were almost see-through. Dr. Grover agreed with my assessment of this being our last child, because my uterus could not handle any more stress. My uterus could have easily ruptured. 

I was brought back to the room, very confused. I had met my daughter for the shortest period of time, barely got to touch her, and was told that I could not officially go into the NICU until I was off of the IV magnesium. 

The following days were a lot of the same. I was stuck on the IV magnesium until 24 hours post c-section, which was in the evening. Tim and I visited Emryn, who was in the isolette, and wearing a CPAP. I couldn't touch her at that time. My BP was still uncontrolled, and I needed multiple doses of IV labetalol. Eventually, I was placed on oral labetalol, along with my nifedipine, to help control my BP. The morning after my IV magnesium was stopped, I went into the NICU and held Emryn for the first time, skin to skin. That was such a magical experience. She calmed down pretty quickly, even though she hated wearing the CPAP.

Over the next few days, Emryn was taken off of the CPAP and was able to maintain her oxygen saturation on room air alone. They moved her tube from being an OG (oral-gastric) to NG (nasal-gastric) and started introducing milk via bottle. She has been slowly improving. Her goal for discharge is to be able to take 80-90% of feeds by mouth. Another thing that Emryn has been managing is her bilirubin levels. They became too high at one point, and she had to be placed under the bili-lights. Thankfully, she only needed to be under them for less than 24 hours.

Emryn is now a week old. This is so strange to me, because she is still in the NICU. I only get to spend about 1.5-2 hours a day with her, and can hold her for about 30-60 minutes. This has been extremely hard. I didn't realize how hard this would be until she got taken into the NICU. I am aware that this is the safest place for her to be, and that she is getting the best care possible. I just cannot wait until I get to bring her home. We love her so much.

Welcome Emryn!

Giving a quick kiss to Emryn before she goes to the NICU.

Visiting Emryn in the NICU.

Holding Emryn.

Family.

Tanning Emryn.

Eating time.

Good Times At Church

It has been a week since my last post. I did go into a bit of a depression, but thankfully, my kids and husband were able to help pull me out of it.

One of the things that has helped me improve quicker is that Tim has started writing a fictional story from Flynn's perspective. I'm really hopeful that Tim will complete this story, because I want to share with others an idea of how Flynn thinks and reacts. We won't know for sure how Flynn actually thinks until communication improves, but this is a start.

I was nervous about church. Church is always a bit difficult for our boys, because it happens during Ian's naptime, and everyone wants to eat, and be loud. Flynn did very well today. He didn't fight me too much as I held him still during Sacrament. He also did very well when we were in Primary. Flynn loved running around and jumping, and made many of the teachers smile. I let him bring a toy that allowed him to adjust it's size and shape frequently. 

Last week during the lesson part of Primary was when Flynn had trouble. This time, he sat, only needing to get up periodically, and drank water. I appreciated that his Primary teacher asked Flynn specific questions which I then was able to answer for him. I like that she tries to include him. Flynn did get pretty mopey at the end, because he was getting tired. He had been up since about 5am, and was yawning a bunch. But, he made it until just under 10 minutes left of church. 

I am so proud of my Flynn and how he continues to try. Currently, he is trying to nap in his room. We'll see if he actually ends up sleeping.

Flynn, our wonder child

It's been ages since I've written in this blog. I was encouraged yesterday, after having a hard time in church, to write again.

Flynn has now been in daily therapy at Pediaplex on Monday-Friday 8am-4pm. He loves going to therapy, and has great rapport with his therapists. His biggest change over the past few weeks/months is using the tablet more consistently. We purchased a tablet to help with Flynn to communicate. On it, there is an app called "cough drop", which has pictures of different things that Flynn would want, like food, TV shows, different rooms in the house, feelings, etc. Pediaplex has made huge strides in having Flynn use the app and having him understand his actions through it. They have also been working on having him nod yes or shake his head no, which is slowly improving. Flynn still doesn't talk, but he does make vocalizations frequently.

It's difficult as a parent watching your child be upset, and not be able to communicate what is wrong. Just this morning, Flynn became overwhelmed because Ian was being noisy, and we had to shoo Ian out of the dining room so that Flynn could eat breakfast. I hate having to separate my children, but we unfortunately need to do it very frequently.

I get overwhelmed with Flynn, especially at church. At my church, we have 2 hours. The first hour we sit out in the foyer because between Flynn and Ian, my kids are very loud and energetic. Most of the time, we have no problem, except having to send Preston out to run after Flynn and get him back. Only on one or two occasions, we have had other church people sit in the foyer with us. When that happens, Flynn gets very curious and tries to befriend others, but coming close to them, or going for their hands or feet, because he loves things that match. We try to let folks know that he has autism, and try to get Flynn to come back to us. But, then the people get upset, and leave.

This week, I was having trouble with Flynn during second hour. In second hour, is primary, and he joins kids his age group to do singing in the first half hour, and then for a lesson in the second half hour. During singing time, he rarely sits still, and this week he was fixated on the pulley for the blinds. I get so worried that some day he is going to break it. I keep trying to redirect him, to have him play with the magnatiles that I brought, or to use the ribbon that was handed out, but he has so much energy. He jumps and runs almost non-stop. In the second half, we are in a classroom, with a few other kids and a teacher. I cannot keep him quiet or still and this week the other kids were complaining about him. I just don't know how to respond to that. Flynn ended up straightening out and hitting his head against my cheek by accident. It really hurt, and I had to leave the room with him. I know that it wasn't done on purpose, but it just added to my frustration.

People don't understand why he's loud, why he doesn't talk, why he likes to put similar things together. Don't understand why he has a mark on his forehead, why he will always have a mark there. And I'm getting tired of having to explain why. I know that I shouldn't and keep trying to cling to what I know and to lean on my husband, but it's just so hard.

I just wish there was more understanding in the world.

How autism looks for us

 I've been wanting to write this post for awhile, but have become very busy. This happens when we move, and I get pregnant, and do more at work. I just checked and realized I haven't posted for a few months, so some updates on us.\

Flynn got diagnosed with autism about 1 month ago. We weren't really surprised, and we are happy to have the diagnosis. It actually helps put a lot of his behaviors and actions into perspective.

If Flynn is left alone in his room, he head bangs. What that means is that he goes onto his hands and knees, rocks, and hits his head on the door repeatedly. We believe he does this because he does not like to be left alone. This happens about three times a day. First thing in the morning, once he wakes up, before Tim is ready for the boys to be out of their rooms. Secondly, when he is put down for a nap in the afternoon. Lastly is when he is put down for bed at night. If Preston is awake, he goes to play with Flynn in the morning. During the other two times, he has to be alone, otherwise he won't rest. We have tried stopping him in various ways, disciplining him, but none of that works. We are currently in the process of making a mat to cover his door. This will be a combination of yoga mats and straps. Hopefully, it will cushion the impact. We are also having him work with therapists at Pediaplex for this.

He likes to play, but prefers to play alone, but within site of others. He tends to either find a toy to attach on one of his fingers, or shoves the toy into his mouth. He really likes to bite and chew. Thankfully, he doesn't often try to bite others, unless he gets really excited or angry.

We are starting to get some improvement with conversation, and this is due to sign language. He is able to sign, "more", "food", "water", "want" and "all done". I know it's not much, but it's something. We, and his therapists, are still working with him to give us "yes" and "no" in the form of head movements.

He also does attempt to make noises more frequently than before. He tends to do this with jumping, especially when he's excited. He never seems to tire from jumping.

He enjoys being hugged or held, but only for as long as he wants it to be. This is the same with reading. If you catch him in the right mood, he will allow you to read.

Flynn should be starting ABA therapy in a couple of months. This will be a half day therapy, every day during the week. They will be working with him on speech, eating, sitting, and other useful skills. Preston has been learning how to better understand his brother, and how to play the way Flynn wants to play. I am thankful that we have more answers and plans for the future.

Sensory Processing Disorder

 We still have yet to get a formal diagnosis for Flynnie. However, we are working off of a possible disorder, that Flynn seems to match pretty well.

First, some terms that need to be understood:

Sensory Integration: is the neurological process that refers to the organization and interpretation of sensory stimulation from the environment. Sensory integration occurs in the central nervous system (brain, spinal cord, and nerves). The process occurs automatically as the body gathers information through the skin, muscles, joints, inner ear, eyes, nose, and mouth.

Sensory Processing Disorder: Problems in the way the brain takes in and responds to information from the environment and one's own senses. This results in problems in processing information and behavior appropriately for the task at hand. Children with this disorder often have a brain that experiences difficulty with adjusting to or regulating responses to sensory inputs. The child either does not react strongly enough or reacts too strongly to sensory input from the environment.

Sensory Seeker: craves excessive stimulation from one or more of the sensory systems (touch, visual, auditory, movement and balance, body awareness, taste, and smell). The child seeks out more stimulation than other children. These children are viewed by others as risk takers and are often in constant motion.

Characteristics of a sensory seeker:

• Spinning
• Climbing too high-no fear
• Climbing on everything
• Crashing into things (people, furniture, walls)
• Mouthing/licking objects (furniture, toys, body)
• Chewing on non-food objects (toys, clothing)
• Eating excessively - craving oral stimulation
• Constantly wrestling or rough housing with siblings and peers
• Touches everything
• Playing with food
• Messy eater
• Over-stuffing their mouth when eating
• Craves spicy and hot foods
• Under-responding to pain (shakes it off quickly)
• Makes a big mess when playing - dumps out toy bins to look at everything
• Engaging in excessive sensory play - seeks it out (mud, water, soap, etc)
• Constantly jumping around
• Frequently pushing others - has difficulty standing in line
• Running barefoot
• Difficulty sitting still
• Falls out of their chair for no apparent reason
• Seeks out loud noises - turns up TV/radio, places battery operated toys against ears, etc
• May have difficulty regulating their volume level - talk loudly
• May hum or talk out loud to self

This explains a bunch of Flynnie's behaviors: how he screams, jumps, bites everything, puts all things in his mouth, does his exercising, and over eats a lot. 

We have been learning how to work with Flynn to help him with his need for excessive stimulation. We give him a toy to help him focus. We read to him, and give him bear hugs. We also have him roll on a ball to help him focus and give a bunch of stimulation to his body. We also try calming music at night to help him relax. We know that this is a work in progress, but at least now, we understand a bit more of why he acts the way he does. We are better learning to enter his world. 

Fatherhood

Today, I reflect one three fathers: Terry Harbison, Ray Brown, and Tim Harbison.

Terry and Kathi started dating 40 years ago. Kathi kept in contact with Terry during his mission, and got married shortly after he returned from serving in Spain. They were married in 1984, and had their first son, Eric, in 1985. Four years later, they had Tim, the man I married. They later had two other boys, Kenny and Chris, all of which are now married with children of their own. Terry was active in his church callings, through The Church of Jesus Christ of Latter Day Saints. His various callings included: a member of the Bishopric, High Priest group leader, and primary teacher. His true passion was teaching, and he taught for about 6 years. He taught government and economics, and history. Terry would take Kathi to summer musicals, and they frequently would go to the Arboretum for walks. He was diagnosed with frontal temporal dementia in 2015. He retired from teaching, and spent a couple of years at home with Kathi after his diagnosis. He later got moved to Golden Acres Nursing Home. Terry enjoyed visitors, and was able to see his children, siblings, and mother frequently. He loved his grandchildren, and tried to play with Preston and Flynn whenever he was capable of doing that. On Sunday, the family got the call that he was not doing well, so many of us visited him to say our good-byes. On Tuesday, he was diagnosed with COVID-19. Today, on Thursday, he went home to return to live with his savior, Jesus Christ.

Raymond Brown was born on July 23. Today, he turns 63 years old. He has been an amazing father to me, and has taught me so much about being an amazing parent. He has always, and will always, be a great cheerleader for me. He has gone to all of my track meets, concerts, and even traveled to Rwanda to enjoy a new land with me. I have loved traveling with my family to many locations through the years. My dad worked for a long time as an electrical and systems engineer for BAE Systems. Since leaving his job as an engineer, he is now working more on hiking, running, and volunteering. He does an amazing job with Preston and Flynn.

Tim is the third father I would like to mention. He learned how to be a father early on in our marriage. He was meant to be a father; it is truly something that he excels at, that he was made to be. He has patience, more so than I have, and is a great teacher to our boys. He is very kind and sincere. I can see all of the love in him.

Updates on Flynn

Let me start off this one by saying that we do not have a diagnosis, other than your generic "developmental delay". We had Flynn evaluated by a pediatric neurologist, who checked his growth, his reflexes, and then said, "it's probably autism", and wanted to order an EEG and an MRI. He didn't actually do any testing on him. We then looked into getting Flynn tested for autism, and learned that the majority of places that do autism testing do not perform the tests until the children are at least 3 years old. Flynn is 2 years and 4 months. We did find one location that does testing prior to age 3, however the reviews and what they were telling us did not sound good, so we have decided to wait.

Here are some of the new things that Flynn has been doing:

• Pointing more (with books, toys, and once at an animal at the zoo)
• Chatting more (B, D, M)
• Focusing longer (he is really good at getting your attention, and holding your face in place while he investigates)
• Interested in books
• Improvement climbing stairs
• He is responding to commands more. He responds to, "come here", "stop", or if you call his name, he will more likely look at you.

We even got a progress note from his occupational therapist this week:

"Today we practiced: bilateral integration, visual motor, motor planning, hand/upper extremity strength, manual dexterity, upper extremity coordination, and vestibular/proprioceptive input.

Today I: participated and finished my work, used good listening skills.

Flynn was able to tolerate sitting on the platform swing for ~5 minutes during the motor activities for vestibular input. He was able to independently pull apart large pop beads 3 times and able to push them together 1 time, and required physical assist for the other trials. Flynn required physical assistance to imitate vertical lines to improve pre-writing skills. He was able to roll a ball back and forth with a partner with some physical assistance required to improve joint attention and bilateral coordination. Good job, Flynn!"

We are very proud for the progress that Flynn continues to show.