One Year...Many Miracles

Summer Shuntin'

At the end of summer we were able to finally correctly diagnose why Tommy's heart rate would keep jumping up even when he looked totally fine. Thanks to the OI Parents Group that I am a part of on Facebook, I was able to learn of the symptoms for Hydrocephalus. As I inquired further with one of the moms I had an "Aha!!!" moment. I prayed and thought about it overnight and by the next morning I KNEW that this is what he had and I contacted our pediatrician right away. She called me back quickly and trusted my reasoning for the diagnoses. She scheduled us a CT, MRI, and a consult with Neurosurgery at Primary Children's. Dr. Brockmeyer was able to come down and meet with us right after the MRI. Thomas did have hydrocephalus and would need surgery the following Monday. We were scared for another surgery, but were grateful that Thomas has a guaranteed airway because of his trach so there is no need for intubation. We knew that the shunt would likely be a lifetime commitment but that it was a needed surgery.

Thomas had so much fluid in his head that he had gained several pounds over the summer. Initially, our healthcare team had thought he was being overfed. Not only had his grown large, but his veins were protruding and his heart rate would sky rocket likely from headaches and the pressure in his brain.

Falling in Love- Our New Home

The surgery took place at the end of August. Tommy was only the hospital for a few days. The last day his arterial line came out while I was holding him and blood ran all down my clothes and had soaked through. They gave me scrub pants but had nothing to lend me for a top. Sadly, that night was the same night that I needed to go meet Taylor's new teachers for her preschool by our new house. Kids Academy is about halfway between Kent & Margaret's house and my house. So right after I left the hospital Taylor went with me to shop for an emergency outfit (while I was still blood stained) and then we back to my inlaw's to change. We were a little late to the preschool meeting but I made it. Taylor's teacher was very nice and quickly learned how unexpected things can be with our family.

Our new house is a spacious rambler with a master and Thomas room on the main, laundry room,  a large family room upstairs, and 3 bedrooms, another large family room, and storage in the basement. The home will work really well for Thomas when he starts using a wheelchair. For now, it's great because Thomas can finally be moved into his bedroom for nap time and bed time. We are able to wheel his machines around and still have a lot of room to play. I'm able to do laundry, give the kids baths, cook and get things done without leaving the main floor. We joke that we could retire here!

We were so blessed to have neighbors from our old ward help us move. If they had not come there is no way we would have been able to get out of the house on time. Moving into our new house we had family members, friends, and neighbors all come to help. It was wonderful.

The next day there was a terrible wind storm that knocked out our power. We had to go over and spend the night at my in laws since Tommy's machines can only go so long without power. The next morning we returned to the house to try and unpack using only natural light since the power was still out. Later that day I was brought to tears of gratitude for a neighbor across the street who came and shared an extension cord with us to his power generator. It was so touching the support that we already felt from our neighborhood.

Later that night, Shane went out to Costco who luckily still had power and was able to purchase one for us to have on hand for the next emergency. 

 

 

 

October

We started fall with some exciting events and the ball kept rolling into October. Tommy broke his leg from his pulse ox off accidentally getting pulled. We used ortho glass for the first time. We also had our annual Halloween Spooktacular with Shane's best friends from college and their families. 

 

We were able to get Tommy started with his helmet to reshape his head and it was a disaster. He received his helmet right before we went on our trip to Disneyland. We had been planning this trip since before Tommy was born. The trip included two of Shane's siblings and their families, Grandma & Grandpa Broadbent, and our family. We flew with Thomas while Taylor made the road trip with Grandpa and Grandma. Shane had us renting a beautiful house near the park that was perfect for a large group and swimming in a backyard lazy river. The trip was just what we needed. It was a milestone and celebration. It was our first time going to Disneyland together and we loved it.
 Tommy was only able to go on It's A Small World, Tikki Tikki Room, and the Jungle Cruise. It was really hard because of the machines and that Tommy needed to stay in his stroller. We promised ourselves we'd go again when he's graduated from the machines.

The night we flew home we took off Thomas's helmet that he had only had one week and his skin look really irritated. We thought "good thing we have our one week consultation on Monday", cleaned the inside of the helmet and put it back on for the night. Thomas was up screaming and crying all night. It wasn't until the next morning that we found out why. His helmet had rubbed against his skin so bad that it made an opened, infected wound right where his shunt line was.

Thomas ended up getting an emergency shunt externalization surgery and a month long admission with a PIC line of antibiotics. It was horrible. Thomas was healing from surgery and from the infection but he was in the hospital which we hate. We couldn't play with him or position him like we normally would because of the externalized shunt. Every day we would be up there to see him and to spend time with him. It was really hard on Taylor. We were grateful for the friends and family who stepped in to help with meals, visiting him, and to help with Taylor. Luckily, she was able to visit Thomas because it wasn't RSV season yet.

Finally, Thomas was able to get his new shunt on the other side and was able to come home. He handled the surgery like a champ except for the massive bruising across his chest.

Holidays

Thomas came home right before Thanksgiving! Hooray!!! We enjoyed doing all of the holiday things that we tried to do last year at the end of my pregnancy for our bucket list in case he didn't make it. It was a wonderful feeling to do this things with him here! Thomas was able to celebrate his birthday with so many friends and family members.... It was so special. Instead of gifts, we collected items for the NICU families of Primary Children's. Shane and I were so touched by all the baby toys, clothes, gift cards, money, hygiene items, and baby blankets that were donated. We took the kids with Grandma/Grandpa Broadbent to the hopsital to donate the items and it felt so good to help out those families that were going to celebrate Christmas with their babies in the NICU. We were so grateful that we have passed that stage of life but will never forget it.

We made it through the month with one broken arm. But it has taken longer to heal than in times past so we're still extra careful with it. We splinted him pretty good and that helped a lot. 

One of my favorite things was going to Taylor's Christmas dance recital! She's currently taking ballet and tumbling. Taylor celebrated her birthday at a nearby nail salon with two of her cousins Katie and Claire Bear then went to McDonald's for lunch and to play. We're classy like that. Taylor was in heaven! She's seemed like she was 4 for quite a while so her birthday was overdue.

Words cannot begin to describe how grateful I was to be able to celebrate Christmas as a family this year. No hospital. No worry of death. It was peaceful and uneventful. That's all we wanted. We look back on all the miracles that took place to help us reach the end of year together and I am amazed.... God knows me and knows my family. Prayers are answered. The Holy Ghost has guided us. Thomas is a strong boy with a special spirit and a mission to complete. At the beginning of this year, Shane and I assumed Thomas would not be with us for the end of it. Now, we feel that there are so many possibilities for our family. Our goals are big! But our favorite goal is to have a peaceful and uneventful 2017 with minimal breaks, no hospital admissions, and family getting to just enjoy being together. I hope Taylor will learn to read more this year. I hope Thomas will hold his head up on his own and roll to his side on his own. For Shane and I, I hope we can get in more date nights and finish our back yard. :)

He's Moving, We're Moving

Thomas is moving!!! He recently received his second dose of Zoledronic Acid (a biphosphonate).  Zole slows down bone resorption, allowing the bone-forming cells time to rebuild normal bone and allowing bone remodeling. He received his first dose at the beginning of February and his second dose mid-June. It's been about a month and I can see HUGE improvements in gross motor skills! Thomas is doing things that normal babies typically do by 3 months. It's a big deal for us though considering that until his trach surgery on April 27th, he had spent half of his life in the hospital and the most of that time struggling to breathe.

Our strong little boy is finally kicking his legs when he's happy, when he's mad, and just to play. Thomas is lifting arms enough that his shoulders are off the ground. He's reaching for and holding on to toys with both hands. Head turning is becoming more common when he sees something he likes and he's trying to find it. His grasp is getting stronger and loves to hold our finger to go to sleep.

Some of the funny things about Thomas:

- He loves to play and bat at Taylor's bright pink and purple necklaces.
- He eats like a hungry dinosaur. They even noted that in Thomas's chart as "hungry dinosaur". Baby food is one of Thomas's favorite things in life. I guess if you go months without taking anything by mouth rice mush and pureed prunes taste amazing.
-Baths are awesome! He enjoys them hot and loves getting his hair washed.
- Typically, a trached baby is silent because they don't get to move air across their vocal chords. However, Tommy has figured it out and loves to hear himself talk. He only does it when he's relaxed, but once he gets a squeak out he'll keep going until he's distracted.
- Thomas goes every where in his diaper. All the time. No matter what. He sweats so much which is typical of severe OI. No one knows why but they all share that odd characteristic. Thomas gets so hot even just laying on a pillow that we always have a fan on him even in an air conditioned room. He goes to church in his diaper, out in public, and probably won't be wearing clothes again until fall.
- Taylor and Thomas have inherited a mommy trait. They both twirl their hair. I have a horrible habit of playing with my hair and both of my kids do it when they're falling asleep. We noticed it in Taylor when she was a baby and she still does it. Thomas has long enough hair and he does it when he's relaxing and going to sleep. It's weird seeing your kids do the exact same things that you do and you wonder how the heck did that get passed on? It's like it was prewired in them.
- Thomas loves to be kissed everywhere and loves getting raspberries. He enjoys his feet being stroked and his favorite way to fall asleep is on mom's chest (if I can manage to get him there without the trach getting accidentally pulled out).
- Thomas is the happiest boy you've ever seen at 3am in the morning. He is sunshine and rainbows and will just smile at you until he goes back to sleep.
- Finally, Tommy  gets to have blue poop every once in awhile. It's like he's a unicorn or something. Every so often he has to have his food dyed blue so we can see if he's eating safely and not aspirating. The whole next day is full bright blue surprises.


WE'RE MOVING!!! Well, at least we thought we were...
Living in a three story house has been very difficult when it comes to regular day to day stuff as a mom. First off, Tommy hasn't slept in his bed ever since February. He hasn't even seen another floor of the house since then. He is stationed to a 3 foot radius in the main room off of the kitchen. That's it. His trach is his airway and therefore he has to supervised CONSTANTLY. I can run upstairs quickly to do laundry but if I hear him beep I have to fly down the stairs to make sure he's ok. We haven't had a real scare since May, but that's because we've gotten better at managing everything and preventing issues with the trach. But back in May Tommy was having so much condensation build up in the tube that he was coughing on it all the time, so we thought we'd take him off the humidity and just use the little filter that's meant for when we're on the go. Terrible and life threatening idea... Tommy's lungs got so dry that his mucus was super thick and clogged the trache and we almost lost him. We were able to switch out the trache quickly and he started breathing again with the help of the vent. That moment will forever be burned into my memory but also reminds me how quickly something could go wrong for Thomas and how someone knowledgeable ALWAYS has to be near.

I would love to be able to have a routine with Taylor and Thomas of how we do our days, play, and get things done. But it is so hard with three floors. Plus, even getting Tommy out of the house is hard because of the steps out of the house. So, we made the decision to put our house on the market and look for a spacious rambler with easy entry! We decided to look up in Davis County to be closer to family. After two failed offers, we found a new planned community in Layton that works with a builder we were impressed with and has a layout that's perfect for what we need. We don't get to start construction until our South Jordan home sells. We did go under contract within a few days of going on the market, but their financing failed so we're back on the market. It's scary to not have any idea when things will happen, but I trust that it will work out. In the meanwhile, we're enjoying staying with Meg and Kent (Shane's parents) in Centerville. It's nice to be able to do things with his siblings and be back in our old stomping grounds from when we were dating and first married.

Staying out of our house while on the market was a decision we made to make buyers feel more comfortable in the home without all of Thomas's equipment and to make it less stressful on Thomas. Getting him out of the house is a ton of work. Unless Shane or his parents are available to be with him, I am with him most of the time. If I'm alone with Thomas and miss T, I am not able to just pack the kids up and go to the store or to the park. It is a lot of work to get all the machines set up for on the go and then into the car. I can't take him in the stroller by myself because I can't take him down the steps without a second set of hands. Also, Thomas gets extremely hot and kinked in his carseat. The trache sits below his chin and the connection to the tubing is hard plastic. His head is also really big for a 7 month old and he doesn't have the strength yet to hold it up. But, his head is also too big for the infant padding insert that is meant for newborns. So his head rolls to the side. It's just stressful for all involved but he does love to get out. Thomas enjoys seeing the trees, the colors, the lights in the hallways of a building, and other kids. It'll get easier, but for now we mostly hang out in our 3 foot radius.

The only day this summer that Thomas has worn clothes. For the Broadbent Family pictures.
He looks like a cute young man!

An awesome benefit of living at Grandma's- unlimited access to cousin fun!

Three Months We Didn't Know We Had...

Month One- 

Uncertainty, overjoyed, unbalanced, blessed, strengthened, hope, fear, immeasurable love, inspired.

These are all the emotions that I went through during Thomas's first month of life outside the womb. That little boy amazed everyone. He was born with a broken body with barely a heart beat, but was able to overcome and persevere through so much pain and other health issues. We could only look on and try our best to comfort him when we were at the hospital and to make sure he knew how much we loved him. 

I hated feeling like I wasn't able to be with Thomas as much as I wanted OR with Taylor as much as I wanted. I don't know how parents do it without family or friends to help them. How would a single mother do it? I feel like I barely survived. On top of that I was pumping breast milk every three hours while Shane worked all day long and then went straight to the hospital afterward and didn't come home until Tay was in bed. 

Month Two- 

Excitement, scrambled, tired, self doubt, frustrated, blessed, strengthened, hope, fear, immeasurable love, inspired.

Oh goodness, Thomas was actually discharged to come home! We were able to spend a full week at home before he had his first trip of many to the ER. This became the month of surprises. Every week there was something different we were worried about- feeding, re-flux, aspiration, hernia, breathing, But this was also a great month of learning and growth for all of us. Thomas was doing well with Occupational Therapy and Physical Therapy. Thomas was starting to move more and didn't seem in pain from healed fractures. Shane, his parents, and myself were learning more about Thomas and his cues. We were learning more about what was normal for Thomas and what was concerning. We researched more about respiratory and digestive issues with babies that have severe OI. We became more comfortable with the machines and with handling Thomas. I became associated with the OI Parents group and immediately felt them encircle me with their strength and experience.

One particular night, I know Shane and I felt so tired and were having a hard time handling Thomas's schedule and cries throughout the night. Everytime I heard Thomas start to cry that night, I'd say a prayer to Heavenly Father that if it wasn't serious that Thomas would be okay and go back to sleep. Thomas ended up having such a good night that night...

It seemed that there were a lot of questions I still had about the plans for Thomas and why things didn't seem constant for Thomas. Why were we going up to the ER so often? Why can't I get things figured out for my son so we can stay out of the hospital for at least two weeks? What was I doing wrong?

However, my family was together all under one roof. I was able to wake up and cuddle Thomas while Shane and Taylor chased each other around the house.

Month Three- 

Nervous, confidence, tired, frustrated, blessed, strengthened, hope, fear, immeasurable love, inspired. 

I was about to return to school. I had a couple of weeks left. Time to start making freezer meals. Time to look at lesson plans. Do I even remember all of my students' names? How am I going to balance teaching, Taylor, and Thomas? 

Thomas was still having pulmonary and digestive issues, but we were getting sick of staying trapped in the house. We grew confidence in Thomas and in ourselves and ventured to a family party, sacrament meeting, and to the park. I started looking at our situation differently. No matter how much time we have, I don't want to say that we spent all of it on one floor of our house because we were too scared to live life. I needed to figure out how to live life with Thomas's machines and his fragile body. 

Great Grandma B got to hold her first great grandson! This woman inspires me. I was exhausted from being at the ER all night so my grandma came and made me lunch and cleaned the house. She is in her 80s and is still willing to get her hands dirty and serve. I have always been able to count on her and hope she knows that I will be there to clean her house and make her lunch when it's my turn to take care of her. 

Looking ahead at the next couple months and looking back at the last few months, I realized that there was no predictability to Thomas's situation. Not only was his mutation completely unique to him, Thomas's story was unique as well. Thomas has never gone more than a week and a half without an ER visit, a sudden need for a primary care visit, or a hospital admission. So given that pretty busy history, it didn't seem doable or even smart to continue working. It seemed like it would only end up hurting my family. I had been praying as to how I can better help Thomas and without a doubt this was an answer. My family needed all of me.  

Luckily, we were able to find a replacement at the end of my first week back. Thomas made it the entire week and then needed to be taken by ambulance to Primary's. 

Month Four- 

Angry, tired, frustrated, unbalanced, relieved, blessed, strengthened, hope, fear, immeasurable love, inspired. 

Thomas celebrated his one month, two month, and three month birthdays in the hospital. Maybe his four month birthday will be different. 

During this hospital admission I have often found myself angry that Thomas isn't being handled with enough care in regards to his limbs and possibility of fractures, angry that not enough was being done to ensure that a definitive plan was in place to make sure that he didn't end up in the ambulance again, angry that I was not being listened to when speaking about experiences of other babies with severe OI. 

At the same time, I was also sinking myself into conference talks from the last session and praying daily independently and with my children. In the car to and from the hospital I was finding comfort in Primary songs and conversations with Taylor about the Plan of Salvation. 

Tired and trying to figure out how am I going to do this. It's only been a week and half but this is not a quick fix. Thomas needs a lot of help for a long time. What decisions are we going to have to make? Will today's doctor be doom and gloom or optimistic? Will today's doctor be familiar with OI? Blah..... I'm exhausted even thinking about it. But Shane and I know where we stand and know that we do not want to be the ones to tell Thomas when he is done living on this earth. We trust in Heavenly Father and we trust in Thomas. We want to give Thomas EVERY OPPORTUNITY to live his life on this earth and when and if Thomas decides it is more than his precious body can handle, his body will let us know. I will not fail Thomas. 

We were blessed to watch the play based on a book by Nathan Glad (one of our dear friends with OI)- "Climbing With Tigers". This kiddo has been such a motivator for us to fight for Thomas. He is the happiest kid and doesn't let OI get in his way from living life. The play helps others to see what life is like through his eyes. Nathan's play also teaches so much about bravery and friendship. We walked away truly lifted and grateful that Taylor was able to experience that.  GO SEE IT!!! We are so grateful to know his family and look forward to learning how to pay it forward and serve other families. 

http://www.saltlakeactingcompany.org/this-season/item/1003-climbing-with-tigers

Continuing to pray for guidance on how to take care of Thomas, consulting with my army of OI mamas, and relying on friends and family to help us as we scramble day to day... finally a care conference was set. With Thomas's entire team, we were going to finally build a plan for my little guy to not only get him to a barely safe place to go home but to get him to a strong and sturdy place that would be the most promising for Thomas in the long run. We know Thomas needs to get his lungs to mature, the proper nutrition, and the best possible way for us to support his lungs. The days leading up to the conference my prayers had changed. Instead of praying for guidance for myself, I prayed for the doctors and Thomas's team to be guided. 

The day before the conference a new attending was assigned who also happened to have a child with special needs and knew the importance of a support group and the value that other parents were able to share with me. She recognized the weaknesses of his current care plan and immediately wanted it to be more driven and goal oriented. She also reached out to other resources that specialize in OI. Between her, our primary care doctor, and the OI specialists I felt that a weight had been lifted off of my shoulders. The care conference was a team of 10 who's primary concern was helping Thomas get the care he needed so he can not only come home but have the best chance of staying home for awhile. 

He's needing to have better pulmonary support via High Flow and BiPap (or Cpap... they are going to do some studies with Thomas to decide which). He's now receiving Zole treatments to help his bones and will be starting some respiratory medicine as well. I don't know how our new plan will turn out but I do know that I finally feel peace that Thomas IS in the right hands now and the doctors are going to do the best they can. 

Dreams

Tonight when I was getting ready to put Taylor to bed, she pulled out several books that we have read a million times. Finally, I stepped in to see if there was something on her shelves that we hadn't read in a while. I found a book of hers that I had actually never read with her- "Fanny's Dream". 

I read about this woman who was waiting for her fairy godmother who never came. She never got to marry the prince or live in a castle or live a life free from hard work. But she did marry a man who loved her. They worked side by side. She had her hands full with taking care of the children and the life they had created for themselves. Their house burned down, but they rebuilt it and pushed forward. Later, her fairy godmother finally came and offered her the dreams she had long ago. She chose the life she had built. 

Holding back tears as I finished reading this book to Taylor, I realized that I would not have my life any other way. Yes, of course I wish I could take away Thomas's struggles, the medical bills, the stress, splitting our time between our children, and how tired we are.....

But I LOVE my husband and how hard he works for us and how much he loves being a dad. His patience and his priesthood has been such a blessing during this time. I LOVE what a strong spirited girl my daughter is, how caring she is to her brother, her creativity and her affectionate personality. I LOVE my son's facial expressions, quiet strength, his smiles and coos, his heavenly spirit, and the humility and perspective he has given me. 

What has happened to Thomas is not any mother's dream, but I know that we can build an even more wonderful life for our family because Thomas is a part of it. 

New Year, New Room!

Oh my goodness, this last week has been a crazy week. We loved spending time with Shane's family for New Years. Taylor enjoys playing and being crazy with her older cousins.

We received a call that Thomas was pooping out blood and that they were going to do tests to see what was going on. Everything came back normal AND it didn't happen any other times so they're not worried about it anymore. When they called to tell me this they also called to tell me that Thomas was going to be released in the next week. WHAT?!!!

He's done so well since the week of Christmas on his breathing that he's finally down to no pressure, and only the lowest setting possible of oxygen. Thomas is also gaining weight and maintaining his body temperature fine so he has the green light to go home. Yes, he still has OI and always will but he's stable enough to come home to us.

Thomas will be coming home later this week on oxygen and a feeding tube. Shane and I will be trained on how to manage those, his pain, and his hernias. Thomas can't have any surgeries until he's older so for now it's making sure Thomas heals, gets stronger, and that we prevent any new fractures as best we can.

Later this week we will get an answer to the big question- if Thomas has Type II OI (which is lethal). If he does, Thomas is a really rare case because most babies die within 48 hours with that type. He likely wouldn't live past his 1st birthday. Thomas shows a lot of characteristics of Type II and Type III so we're hoping that he has Type III since that one is survivable.

Our little boy did get moved to a regular hospital room though where he just has one other baby neighbor. We have a lot more room, privacy, a crib, soothing music, toys to look at, and a more calming environment. We are so grateful to the NICU for helping our boy survive this long and for the support they gave us, but we are GLAD we are outta there!

Today was a special Sunday for our family- Taylor started Sunbeams and today was the last Sunday that we had to go visit Thomas as an inpatient. :) So many miracles have taken place in the last few weeks that I can't even count... We know Heavenly Father is aware of our family and watching over Thomas no matter what happens. Thomas is such a strong little boy and I will forever be grateful for this time with him.