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. :)

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.

Our Journey with Baby Thomas

This last April I was in Disney World for the International DECA competition with my students from Hillcrest High. While I was there, I felt sick and exhausted.

After I returned home from the trip, I tested positive for our 4th pregnancy! This little baby was going to be our rainbow baby after two miscarriages from 2014. We were so excited, but wanted to wait cautiously until we were into the safety net of a second trimester.

At only 5 weeks pregnant we were able to get an ultrasound that showed the start of our little guy and his wonderful heart beating away! That gave me some reassurance and we held our breath that this wonderful baby would stay with us. Every appointment brought the sweet sound of his heart beat. He moved a lot and always changed positions while we were trying to listen. As we got closer to our 19 week appointment, Shane and I had decided on the name Thomas if the baby was a boy. Thomas is a dear family name- Shane's father had a little brother that passed away named Thomas. It was classic and felt right. We took forever trying to come up with a girl name, but landed on Samantha.

The 19 week appointment was a family event. Taylor and Shane were with me as we anxiously watched the ultra sound images to see our baby's cute little body grow and to find out if we had a Thomas or a Samantha. All three of us were ecstatic when we saw that we indeed had a baby Thomas moving and wiggling all around. Something odd was said though during the ultrasound. The tech had asked if we had our baby tested for any genetic problems. We said no.... but thought it was odd she asked. I was bummed though that they didn't get a great picture of his face. We did get one nice side profile though.


It was the next day that a dark cloud came over us when we received the phone call that our little Thomas had Skeletal Dysplasia. We were told that his bones in his limbs and his ribs were not shaped correctly or the right length. At this point, they said it might not be lethal but we would find more information later as we met with a specialist up at the U. We were devastated and started wondering how Thomas's life would be different. We also immediately started researching Skeletal Dysplasia since we hadn't even heard of it until this phone call.

We learned that Skeletal Dysplasia is what causes dwarfism. There are several hundred different types of Skeletal Dysplasia. Some of them are lethal and some of them the babies are able to grow and live relatively normal lives. Specifically, 30% don't make it to birth and 25% don't make it past the first 6 weeks of life. Knowing these statistics broke our hearts. We wanted to be hopeful that Thomas would live and would just have other complications and procedures that we would face with him. One of our main concerns was his mobility and his mental abilities. Babies with skeletal dysplasia also tend to be preemie. We knew Thomas already had a high chance of being preemie since my water broke prematurely with Taylor and she came at 36 weeks.

I was 23 weeks along when we met with our specialist up at the U of U hospital. It was a long couple of weeks waiting to find out more. Shane and I went alone to the appointment and were able to more clearly see his little limbs, a very bent leg, bowed out ribs, and his little chest. His heart was still going strong. After a long and thorough ultrasound session, we met in a private room with our specialist. She explained that Thomas had unusual shaped ribs that prevented her from being able to figure out a diagnosis for his type of Skeletal Dysplasia but the good news was that his measurements were in a safe range that made it so his type was not a lethal one. Hooray!

Questions about his physical abilities and mobility were going to have to go unanswered until after his birth. His mental capacity was not expected to be impacted. His ribs and bent leg were concern areas but could be fixed later on. We were told he might have some of his bones replaced with titanium later on in his life as Thomas grew. We declined genetic testing until after delivery. They said even if we did test at this point there was a good chance we wouldn't know which type he had. After Thomas was born though, through x-rays and further examination we'd have a much higher chance of knowing what type of Skeletal Dysplasia he had.

The benefits of knowing what type is huge. We would know what other complications are common, how tall he was expected to grow, and what kind of longetivity we could expect for his life. We also would be able to know if Thomas inherited the genetic disorder from us or if it was a fluke in his DNA. If he inherited from Shane and I then we would need to test Taylor to see if she was a carrier.

We had a lot of family and friends praying for our little boy. There was so much love and support towards us and Thomas. We knew he would be loved no matter what. I truly felt honored to be his mom. To think what a special boy he is and that I'm the one Heavenly Father is entrusting to be his mother....I already loved him so much. I had felt so grateful for eternal families and that no matter what Thomas would always be our son.

On October 5th we had our follow up appointment at the U. It was just Taylor and I because we thought we were just seeing how Thomas had grown and to maybe have more questions answered since I'd be farther along. Instead the dark cloud that was looming over us turned into the darkest storm I had ever faced. Thomas's measurements were not where they should be for the amount weeks he should have grown. His measurements were now in the lethal zone. They weren't able to get me a good view of his face and the conversation was very quick and to the point. Our little Thomas had a type of Skeletal Dysplasia that was lethal because of how little his limbs and ribs were. His ribs would eventually restrict his lungs which meant that life outside the womb would be fatal for him. There was also the possibility of him being stillborn. Either way, my little boy's life was endangered and I had just received his death sentence. He had too many measurements that were in the lethal range and that were too concerning for life.

I left the hospital bawling with Taylor in my arms. We reached the car and I called to share the heartbreaking update with Shane. That very day and the weeks that followed led to many words of comfort from friends and family members. Many prayers were said for our family and blessings were given. People had asked what they could do to help but I honestly had no answer. We didn't even know what to do ourselves. It had been the strangest feeling to plan for the birth of our child and also need to plan for his death.

At this point our hope was to have ANY amount of time with Thomas. I wanted him to make it to birth even if he was preemie and that we would get to look in his eyes and hold him...If we were able to only get minutes with him we would understand that his body was just too much for him and that it was his time to go.

We actually had a scare one weekend where it didn't seem like I had felt Thomas move for about two days. I also felt like I was having the same contractions that I had in the weeks leading up to my water breaking with Taylor. I was so scared that Thomas had already passed away and that my body was getting ready for labor. We went up to the hospital and luckily he was ok and my contractions weren't progressive so they thought I still had some more weeks ahead of me. 

For my last appointment on November 3rd, Shane was not able to attend because of work. I was scared that I'd receive worse news- that Thomas's measurements were even worse that he was most likely going to be still born. I knew that we had our family fast the Sunday before for us and for baby Thomas. At this particular appointment I had such a strong feeling of peace walking in. No matter what the update was I knew our family was being watched over and that whatever was going to happen we would be able to accept it and feel peace.

The ultrasound images showed the same as before: little ribs, little arms, little legs and a strong heart beat. This time though, my boy wasn't so wiggly. He must have been asleep because he barely moved and it made it easier for the tech to get the images more quickly. Also, she was able to get a wonderful 3D image of his sweet face. Seeing Thomas's full face for the first time just brought me to tears. I wanted to kiss his cheeks, snuggle his face, and tell him that mommy was there for him.

Afterwards, our doctor walked in told me that EVERY SINGLE MEASUREMENT was now BARELY in the safe zone. Just by decimals. None of his measurements were in the lethal range. They were all barely in the threshold of safety. This is not to say that things still can not change and that he is definitely safe... but what this means is that our Thomas does not have an automatic death sentence at this time. Our baby boy might have more time with us. Our baby boy has a chance. I know that the peace I felt walking into that appointment was because I did not need to be scared, because what I was about to witness was a very special miracle. Even if this miracle means that we get to take him home with us for a few days or for a few years, Thomas has a chance.

Our doctor specifically said she's cautiously optimistic. So we too are going to be cautiously optimistic. The Neonatal team that will be on Thomas's case will be contacting us now that we may only be weeks away. They will help walk us through what to expect and decisions that might need to be made. We will be contacted soon by the hospice care at Primary Children's so that Shane and I can prepare our wishes in case Thomas needs to leave us early.

I know that Thomas did not receive a golden ticket saying that he will live and that he will just have some physical limitations from being a little person with some other health complications. I know that he is still not ok and that his life might only be a short while with us in the hospital. However, I can not deny the miracle that took place at that last appointment. The night before the appointment I had started shopping for an appropriate outfit that would fit him for when we would need to bury his sweet little body. Now, I'm wanting to find him appropriate outfits for while he stays in the NICU.  I feel so grateful for this glimmer of hope. So grateful that his definite death sentence has been sat aside. So grateful that there is a greater chance of me looking into his eyes and watching Shane and Taylor hold him versus him being still born. I'm just so grateful for Thomas. So grateful I get to experience this much love. So grateful to be his mother. So grateful for the power of prayer and the comfort that I am able to feel during such a dark & unknown time.

I have no idea what the next couple of weeks will look like or what the delivery will look like or what our first moments with him will look like but I am currently cautiously optimistic.