Next Steps

This guy has something to tell you!

 

NO TRACH FOR ME! (At least for now)

Appointment went well. We are going to continue to monitor him and play with BiPAP settings. They were very happy to see how active and mobile he is, which gives us hope that he will overcome this with some time. We will do a follow up sleep study in August to see how he is progressing. This is very encouraging! 

We now have two pulmonology doctors following him. His pulmonologist who has had him since we started with them is a fellow, which means she's still studying to be a specialist, so we will add an attending who is a sleep doctor. This is great news because attendings have a lot more "pull" in getting things authorized and tend to be more willing to try unique things. 

Additionally, we have found out that there are quite a few policies and procedures that have been changed because of Wyatt. This is a good thing for us, as some of the policies were not working in our favor. At Wyatt's next sleep study he will have a respiratory therapist there who will adjust his BiPAP, as the sleep team uses a different machine which may not give us a good picture of how he does on his own machine. During the next sleep study all information during the study, or if anything happens, they will call his sleep doc and not the on call doctor. This will help with continuity of care. 

All in all, this is encouraging news. We continue to be hopeful that he's on a good path. 

5/23

Looks like someone has a case of the Tuesdays....

 

I took him off BiPAP and turned on the light and got this. I swear he's already a teenager. Little guy rolled over and covered his face. Punk. 

I'm pretty sure he was saying, "Nah. I don't want to get up today. Thanks." I feel his pain. I didn't want to face Tuesday either. But we did. And we killed Tuesday. 

Tomorrow is a big day. We meet with his pulmonology team to discuss next steps. We are hopeful that we walk away with a clear understanding of the results of his sleep study, as well as next steps. I anticipate there will be lots of questions, but that's been the story of his life so far. That kid, he's a conundrum. 

On a brighter note, he is really doing great with his rolling and sitting. He is rolling for a purpose and is determined to roll to grab a toy, or roll to grab a dog. I'll let you guess which one is more exciting for him (and the four legged friends). It's a really good thing we have tolerant pups. I mean, Duke is fairly convinced Wyatt is his baby. So it works. Wyatt is also showing improvements in his vision and is tracking people when they come in a room, or when someone walks by him. It caught me off guard when I went into his room when I thought he was falling asleep and he looked me straight in the eye and gave me a mischievous grin. He knew I was there and knew he was supposed to be sleeping. Stinker. Good thing he's cute. 

We would love positive vibes and prayers for a constructive appointment tomorrow, filled with a plan for Wyatt's care. 

 

(See what I mean about mischievous?)

Update

I spoke with Wyatt's pulmonologist last night about the results of his sleep study. He did not do well. Apparently there was conversation with the sleep lab and the pulm team about sending him to the ER during the study, but I wasn't privy to that information during the study (which, by the way, is super annoying). 

 

What does this mean? We have to determine the best way to treat his sleep apnea. It is either with high BiPAP settings or with a tracheostomy. We are waiting to get in with one of the sleep doctors to talk about next steps. I am hopeful with some time to process and after speaking with the sleep doctor, we will have some clarity. 

This wasn't the news we were hoping for, but it's Wyatt's reality and we will work through it. 

 

An Unusual Journey...

On the eve of my 2nd Mother's Day, I'm taking some time to reflect on my journey to motherhood and the adventure so far. 

I want to first take a moment to thank this guy...

 You know, the star of this blog. I want to thank him for making me a mom. I longed for this title for as long as I can remember and I can't think of a better guy to give me this title. 

 

There is no doubt in my mind how much I love this kid. I know I referenced it previously in the post titled, Love. And all of that still holds true. 

 

We started off a little bumpy. A NICU stay. A feeding tube. Oxygen. Lots of doctors. Leaving our son behind, while we went home. Scary days and nights. A surprise transfer to a new hospital. Going home with a bitty baby. 

Doctors appointments. Diagnosis. Another one. Still some more. More appointments. ER visits. Hospital stays. Surgeries. More ER visits. More hospital stays. Another surgery. A feeding tube. Oxygen. Sleep study. BiPAP. A new feeding tube. More appointments. Unknown future. 

It's a lot for a little guy (and his family!). But, I wouldn't trade it for the world. 

You see, this guy made me a mom. He's worth every worry, every diagnosis, every sleepless night, every beep, everything. He's worth it. He made me a mom. 

This journey has been rocky, to say the least. It's been an unusual journey full of twists in the road. A new destination. A surprise road trip (to Hopkins, of course). It's VERY different than the journey I imagined. But through it all, this kid has defied odds and he still calls me mom. 

(You'll have to excuse me... typing through tears is difficult...)

Being a mom is hard. Being a mom of a child with special needs is hard. Every mom has their own journey, mine is just a little unusual and full of surprises along the way. There are hard days (we all have them!). There are good days and bad days. There are more hospital stays, more doctors appointments, more to be written in our journey. But I'm lucky. His story is still being written. 

 

So today, on this Mother's Day eve, I reflect on how lucky I am to be chosen to be a mom. To be Wyatt's mom. Thank you, Wyatt, for choosing me to be your mother. Your teacher. Your cheerleader. Your advocate. Your strength. 

I'm one lucky mama. 

Mommy & Me

On Friday we had the pleasure of working with a local photographer to take some Mommy & Me photos. To say they are amazing would be an understatement. Truly. Claire from Golden Moments Photography  captured Wyatt's personality so beautifully. I may have shed a few tears looking at these. Okay, it was more than a few. 

 

    

One thing that struck me with these photos is our baby Wyatt isn't much of a baby anymore. But I'm his mother, I can still call him baby Wyatt if I want. Right? I birthed the kid. I call the shots. 

We have a big week coming up this week. Wednesday is the sleep study AND daddy will be gone Tuesday-Friday. Rumor has it his parents will be here. And we are so pumped! Listen, if you don't have amazing inlaws, go and get yourself some right now. I mean, they are coming to visit while their son is gone because they want to help me. I'm sure the little man has something to do with the visit too. 

In all seriousness, Wednesday night is a pretty big night for us. We will titrate Wyatt's BiPAP. That means we will look for the best setting for his machine. If he requires settings beyond what can safely be done, he will need a tracheostomy. While we continue to pray that Wyatt tells us exactly what he needs, there is a really big part of me hoping the trach isn't what he needs. I'm hopeful to have answers on Thursday morning and will try and update here for anyone who may be curious. 

Here's to a fantastic week! 

Love...

When I was pregnant, many people told me I had never felt a love like this...

 

I couldn't quite understand what they meant. 

I knew love. I love my husband. I love my parents. My friends. My dogs. I love with my whole being. 

I found out I was pregnant after running the Pittsburgh Half Marathon. In that moment, I thought I knew love. I loved this tiny human. We loved this tiny human. We knew what love was.  

He grew and grew inside me. I loved him. We loved him. We knew what love was. 

And then something happened. Around 25 weeks we were told Wyatt had some unusual measurements and they wanted a second opinion at maternal fetal medicine. I loved that precious boy growing in my stomach. Oh how I loved him. We loved him. We knew what love was. 

At 26 weeks, we followed up with maternal fetal medicine. They confirmed something wasn't "right" with his measurements. They also saw something unusual with his heart and wanted a pediatric cardiologist to take a look to weigh in on his heart. I loved him even more, seeing him again. I loved him. We loved him. We knew what love was. 

Then at 28 weeks, we saw his heart. Oh how we saw that heart. From every angle. We were given a diagnosis, a scary one. Open heart surgery. NICU. Lots of people in the delivery room. I was being transferred to hopkins maternal fetal medicine for care because the midwives couldn't safely deliver him. I was scared. But oh how I loved that boy. I loved him more because he was mine & he needed me. He needed me to keep him growing and safe.  I loved him. We loved him. We knew what love was. 

Weeks passed. Lots of tests for me. Lots of monitoring. A few scares. Lots of ultrasounds. Lots of measuring. And lots of love, with a few tears thrown in for good measure (thanks, hormones). I loved him. We loved him. We knew what love was. 

And then, after weeks of conversations about making it as long as I could with him inside, he showed us he was ready to make his debut. You see, my boy has always been dramatic. A few crazy heart dips. Some weird measurements again. Crazy hair blowing in the breeze, er, amniotic fluid. He was telling us it was time. I loved him. We loved him. I knew what love was. 

On December 8th, I was induced. He didn't love it and neither did my body. Again, flair for the dramatic. You see, my boy only liked me on my left side and with a steady flow of oxygen. So on December 9th, after 16 hours of urging him to come out, he disagreed with our plan, and I was prepped for a c-section. He was telling us who was boss, and it wasn't me. I loved him. We loved him. I knew what love was. 

And then, I heard his cry. I saw him wiggle around. I saw his face. Felt his breath. 

I didn't know that kind of love until that moment. I loved him. I was his mama. 

 

They took him away so fast. I loved him. We loved him. We knew what love was. 

I held him. 

 

It wasn't until then that I understood this kind of love. It's fierce. It's intense. It's deep. This is the love I had seen before. You see, I saw that love when my parents looked at me. When my mom wiped away my tears. When my dad watched me play softball. When I danced around the room singing songs with him. That kind of love is fierce. It's consuming. It's deep. It's real. 

And now it's mine. It's my job to love this boy fiercely. It's my job to be his voice when he has none. It's my job to wipe away his tears. To kiss his forehead. It's a deeper love than I could ever have imagined. 

I often wonder what could be more incredible than the love my parents gave me. I found it. It's in my arms. 

 

This boy is love. I love him. We love him. We didn't know what love was until him.