Bradley & Brysons Journey

Happy 4th birthday to my sweet handsome boys who made me a mommy!
I can’t believe you’re 4! You both are so smart, so caring, love to give everyone hugs, have a love for elephants, giraffes, paw patrol, Danny Go, Trains and big Trucks! You have grown into little men who love to take care of each other and others. I am so glad I never listened to the doctors and pushed through all the hard times to have you here on earth! I love you baby boys and hope today is a special day!! 🩵 💙

From the last belly pic in the hospital on bed rest
To Bryson being on life support and in the NICU 2mths to Bradley needing help to feed and regulate body temp and in NICU for 8 days
To the boys now learning to write and they never stop being silly
What a crazy 4 years it has been! Wouldn't trade it for anything in the world!

Want to know the number one statement that makes special needs moms roll their eyes faster than you can say “IEP”?

“Special children are given to special moms”🙄🙄🙄

If you have a child with disabilities you most likely just cringed, right? Same, trust me.

But hear me out. As much as I hate that statement, what if we ARE the perfect moms for our children?

What if instead of thinking you aren’t doing a good enough job, beating yourself up for not doing more therapy exercises, having a cleaner house, playing with your child more...

What if instead you decided to believe that you are EXACTLY who your child needs?
(And special even?🤭)

Ask yourself, “If not me, then who? Who better to raise and love this child?”

Our kids don’t need constant, perfect, happy, smiling parents. They need us.

Being a good mom is about LOVE, not about never making mistakes. ❤️

XOXO,
Lauren

Haven’t done an update in a few!
They’re now 3.5!!

These boys have been growing like crazy. Bryson graduated speech therapy about a month ago and continues to wear orthotics and attend physical therapy weekly. Since being out of school for summer (knock on wood) he hasn’t been sick! I’m so nervous to send him back cause I don’t want to see him so sick like last school session. We have a follow up for Brysons scoliosis tomorrow as he keeps saying his back hurts. Hoping it’s nothing to be concerned about!

Bradley was suppose to get speech during summer but his school slacked and are terrible at communicating. After my mom fell and got hurt, Bradley had to attend brothers therapy sessions with us and after talking to the therapist about therapy locations and what was needed, Bryson’s therapist (the best!) said she thinks Bradley would benefit from speech therapy at their location and she would like to do the evaluation herself. Bradley ended up qualifying and he just started and now attends speech therapy every other week!! He as well has been healthy since being out of school.

They’re both excited because they have new friends that we hung out and went to an event and lunch with. Both mamas we were with are also twin mamas and each one of their lil ones have CDH. It’s so nice to be able to connect with others who have been through the same and understand you.

Can’t wait to see what is next for these lil men in the next couple months!!

Yesterday Bryson went for his MRI of his spine to check on his spinal cord to make sure there are no injuries due to the scoliosis. They also did an echocardiogram to check on his heart and make sure that organs and his spine are not pressing against it. He was such a champ through it all. He had to be sedated by IV medication. I told the nurse practitioner yesterday that I demand the vein finder be used on him the first time so he didn’t have to go through multiple sticks since he is a hard poke and he tenses and it blows the veins as soon as they stick him. I am so glad she listened to me and the specialist used lidocaine injection to numb the spot before IV insert and she got him on the first time! After his MRI they brought him to his recovery room and did the echocardiogram while he was still asleep. They got all the necessary information needed since he was still!! ♥️

The doctor called this morning and left a voice voicemail. She said Brysons MRI and Echocardiogram came back NORMAL!! Thank you Lord! Thank you to all who have prayed and kept him in your thoughts. This was just what I was needing to hear! 💜

Bradley also went for a sedated MRI and he didn’t even cry when they did his IV. He watched them the whole time. He only cried when the nurse took him from my arms to carry him to the MRI room. Such a strong boy! His ENT wanted better view of the inner ear that the otoscope cannot see. We are still waiting on results!!

Brysons first CDH appt at Childrens Hospital Saint Louis!
He is going to have the best doctor and pediatric surgeon! Learned some new things that we have to look out for but over all he is doing amazing!
They said he had a pretty large grade C herniation so they’re surprised at how well he is doing with no major health issues. When we first arrived they had a speech and physical therapist come in and evaluate him. Then the CDH doctor and then the surgeon. If other specialists are needed they all come to you that day in the room they first put you in. Very convenient.

Things to watch and evaluate:

-sunken in chest will be watched closely by them. Usually doesn’t cause any issues but it can put strain on his heart and make him become out of breath. Usually people are just self conscious about it and they said they will cross that bridge of something needing to be done if they think necessary.
-have to have a swallow study done to see if when he is swallowing is it going into his lungs and if that is why he gets pneumonias cause he is never sick when he has gotten them. That is done when he is drinking and with a X-ray video.
-speech therapy
-oral therapy (for eating issues)
- physical therapy- he shouldn’t have his neck tilted so much to one side. But the scoliosis will cause that.
- will be referring us to orthopedic surgeon and he may need to start wearing a vest to help spine.

Wish us luck along this new journey of therapy and lots more appointments.

We’re settling in to our new house. We have had some good times so far. Getting to spend a lot more time with the family and the boys are loving it.
Bryson has been staying relatively healthy. Thank goodness. We haven’t had any issues post Covid for him except constipation which is pretty normal for this dude. Today we’re out gardening and enjoying the weather while it’s cooler out.

Been a while since I’ve posted on here.

In February we left California and made the big move to Festus Missouri where we have been so thankful to be able to stay with my sister, bro in-law and nephews since being here. They have adjusted pretty well. They love getting to see the family more!
Since being here we started attending church a couple times and the boys have been going to Sunday school! I cried like a baby the first time I dropped them off!! (So did they and they continue to 😔) They also have been pretty quarantined their first part of life and they have been getting colds here and there when we have ventured out. Bryson just got over a pneumonia about a week ago and now we are all slammed with the nasty COVID! So far we have been doing good. Definitely keeping a close eye on Bryson due to all his health issues.
We are due to move into our new home in a couple days if all goes well! I can not wait to have our own space. Aka mama gets her own bed again 😉

Perfect diagram to show what CDH could look like on the inside.

Brysons stomach, liver and intestines were in his chest.. his stomach was where his heart should have been but his heart was pushed to the opposite side where it compressed his lungs to where it wouldn’t grow like a healthy child’s insides.

It’s officially CDH awareness month!!
I will be sharing some stuff about it this month and things about Brysons journey. Any questions feel free to ask!

Haven’t been on here in a while to update!!

UPDATE:
Thank God!! Bryson is cleared from surgery aka no longer followed unless something is to happen and we need to be seen by them!! His X-ray showed his diaphragm is still in tact with the repair they did. The only thing the surgeon is concerned about is the scoliosis which can push on the organs and cause other issues which we are being followed by an orthopedic surgeon. We just had his kidney ultrasound and all came back looking good!! This surgeon said from the first time he saw Bryson to today he is a total different child. He always calls him “his miracle child” with how bad he was in the beginning. 💜

Day 4.
Medication

There was so much medication Bryson was on. I can’t even keep track with how much. We came home on oxygen, Pepcid, spironolactone and albuterol. Now as of today he no longer needs the help of oxygen, no more Pepcid or spironolactone and as needed use of albuterol. They had to wean him off fentanyl slowly so he wouldn’t have any withdrawals and he did so good coming off it and all the other hard medicine they gave him.

Day 3!
Surgery!
Bryson had surgery at just 5 days old. (1/27/2020) They were doing to try to take him to the O.R but they weren’t successful with weaning him off the machines enough to take him down. So they decided to do a bedside surgery. They had to move Bradley across from him to make enough room around Bryson’s bedside. They had to tell all the parents they weren’t allowed to visit during this time. They said surgery would be only a couple hours and he was done in about an hour and a half. No complications. Thank God. I wasn’t able to see him for a few hours after his surgery due to the NICU closing for rounds at that time even though the surgeon told me to go see my baby the staff wouldn’t let me. I cried and cried... I went and pumped in the NICU pump station room during his surgery so I could be somewhat closer to him. When I was done I walked towards his room area but obviously couldn’t go farther. I was so happy when I got to go back and see my baby (babies) after surgery and give kisses and touch him (and hold brother).
Pictures are from the day of surgery. I was so scared to loose my baby that day!

Day 2.
Hospital...
Every day I walked into the NICU and looked at my baby I broke down crying. Not being able to touch my son when I wanted really sucked. Always having to ask permission to do anything really questions if you’re being a good parent. Having to leave my baby every single night broke my heart. here is what Bryson’s NICU room looked like and O.R.

Today starts CDH awareness month! The photo challenge today is "Date of Birth".

Bryson’s CDH was diagnosed around my 16 week ultrasound. My twins were supposed to be born March 6, 2020. Instead they were born on January 22,2020.

Bryson was immediately intubated and I did not see him or brother for about 24hours. When I finally got to see Bryson he had all these tubes and wires going everywhere, machines beeping, it was a scary. Nobody could prepare you for that when it's your own newborn.

The comparison between the very first X-ray and his most recent. In the most recent (right side) You can see both lungs and his diaphragm! On the left you can only see jumbled stuff. That jumbled stuff actually is his heart on the opposite side, his stomach, liver and intestines in his chest where there was a hole in his diaphragm which was making it so his lung on left side couldn’t grow. All his doctors and his surgeons are so amazing! So blessed to have a miracle baby!

Today was one of the best appointments and best news I have had in a year! Today we had Bryson’s follow up with his surgeon. We had an X-ray done last week they were able to read it and go over it all before our appointment today! Well the doctor showed me the X-ray and Bryson has lung growth! I asked how much has it grown and he said well let’s just say if you put a normal kids X-ray and his next to each other the person reading the X-ray wouldn’t know he has CDH! I started crying happy tears! He is definitely my miracle baby!

The X-ray where it is circled in yellow is Bryson’s lung they thought would never grow! 💜

Today is Rare Disease Day! My son Bryson was born with congenital diaphragmatic hernia, which occurs in every 1 in 2,500 live births. Only about 50% survive, depending on where they're born, treatment options, and a few other factors.

His diaphragm failed to fully form in the womb and his liver, stomach, and intestines were in his chest. He required a major repair surgery when he was only 5 days old. He has since had 2 more major surgeries since birth. He now has a Gor-tex patch on his diaphragm, which can come apart anytime and require another surgery. His right lung does most of the work since his left lung is hardly developed. His right lung is also hyper inflated which poses more risk. We see his surgeon every couple of months and his pulmonologist to keep an eye on him and they do routine X-rays to make sure things are ok inside.

The doctors all said he most likely wouldn’t survive. He showed them he is a fighter.

The doctors said he wouldn’t be able to crawl until way after being one... he was doing it before that..

This kid will do what ever the doctors say he can’t. He’s just like his mama! 💜

Anything you can do, I can do better!!

In one year Bryson has come sooo far! This was the day exactly one year ago that Bryson had his repair for CDH. My first kiss to him as well.
I thank god for my son to be alive every single day!

Have been putting together our story!

On June 29, 2019 I found out I was pregnant. I was feeling congested and just not myself so my sister suggested I take a pregnancy test. I went to the dollar tree and bought about 10 of them. 😂 Well that came back positive, so I took 2 more. Still positive. 😳 I was so nervous and scared and happy. Just so mixed with emotions.

Early on in my pregnancy at about 6 weeks I ended up going to the ER because I was having some bleeding. They do an ultrasound and you can see lil baby button. (My nickname for baby) at this point on U.S they only see one baby but the ultrasound tech kept making faces at the screen. Kept going hmm, huh, etc.. so that put doubt in my mind that there wasn’t just one. so they take me back to wait for the doctor after exam and they said everything looked good. So I was relieved. I sent the ultrasound pic to my friend and she automatically says there’s twins. I’m like no there’s not. It’s only one. 😂

3 weeks later I go to my first OB appt and I ask my doctor how many babies does he see? There’s only one right!?! He says yup just one! I’m like ok cause my friend sees 2 in the ultrasound from hospital. He looked again and said nope just one. So on my way I go.

On August 20, 2019 I volunteered to get an ultrasound to help a girl out for her schooling. I drove all the way to Temecula for this so it better be a good one. We arrive I do all the paper work and we go in the room and the girl says when are you due again? I tell her. How many are you having? I tell her. So the ultrasound tech starts the exam and she saw 2! 2 babies! She questions me again. Same answers I give her... but theres Twins! How was that possible!? I was scared. I was nervous. I was excited. I always thought twins would have gotten one of my sisters but nope.

Fast forward a couple months to October 4, 2019. That was a very hard day. That is the day I found out my twin B aka Bryson has congenital Diaphragmatic hernia. I remember not wanting to talk to anyone, didn’t want to see anyone, was hyperventilating and just wanted to be left alone but I went to work that evening. There was only one person I wanted at that point to cry to but that didn’t happen. The doctor didn’t have the bedside manners that she should have when I got the news. I started crying. I didn’t want to loose my baby/babies. She kept offering that they could terminate my pregnancy because the likely hood of survival is almost nothing. She explained a little more to me as I am sobbing and sitting there with my best guy friend as he learns the news as well. She told me to think it over and she will call me in a couple days to answer any questions I may have. 😳 I had questions then and there that I wanted answered but I didn’t get to. We didn’t qualify for the FETO procedure due to it being Twins. They kept wanting to do an amniocentesis but I declined. I told everyone I am going to love these babies no matter what. At this point I find some support groups on Facebook for CDH and I find a new high risk and a surgeon through someone whose daughter is a CDH warrior! My doctor was not located near home so every appt I had was done in Hollywood from then on. I had just about weekly appointments through my whole pregnancy. This doctor was so nice. Straight to the point. Was gentle when talking to me. Addressed all my concerns and worries. Answered my emails even when he was off. He also said there was a high chance of no surviving but never once told me I should terminate. He had a pediatric cardiologist come in and check Brysons heart during an ultrasound one day and he said everything looked great. Let me tell ya.. what ever they say looked good was a relief. No matter what it was!! I remember always asking him once he put the ultrasound wand on my belly is baby B alive? Does he have a heartbeat? The answer was always yes!! 💜

To be continued....

𝗪𝗵𝗮𝘁 𝗶𝘀 𝗖𝗼𝗻𝗴𝗲𝗻𝗶𝘁𝗮𝗹 𝗗𝗶𝗮𝗽𝗵𝗿𝗮𝗴𝗺𝗮𝘁𝗶𝗰 𝗛𝗲𝗿𝗻𝗶𝗮 (𝗖𝗗𝗛)?

Congenital diaphragmatic hernia (CDH) is a birth defect in which the diaphragm—the muscle that separates the abdomen from the chest—does not develop completely. This causes a hole where abdominal organs can migrate into the chest. When that happens, it doesn’t leave enough space for the lungs to develop normally, making it hard for the baby to breath. The hole caused by the undeveloped diaphragm may be small and allow a limited amount of intestine into the chest. Or it may be large and allow a greater amount of abdominal contents into the chest. This can include the intestine, stomach, spleen and liver. The amount of abdominal contents that migrate into the chest affects whether the lungs are moderately small or severely small. It’s shown that the vast majority of CDH infants do have enough lung to survive, but it requires expert management to help those with very small lungs survive.

𝐖𝐡𝐞𝐧 𝐢𝐬 𝐂𝐃𝐇 𝐟𝐨𝐮𝐧𝐝?

CDH is typically found during the 20-week ultrasound. CDH affects about one in every 3,000 pregnancies, occurring with relatively high frequency for a birth defect.

𝗖𝗗𝗛 𝗧𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁:

Treatment requires surgery to gently move the organs that have migrated back into the abdomen and close the hole in the diaphragm. This creates space in which the lungs can then grow, with careful care and monitoring from your baby’s physician team.

Hello everyone. I created this group to not only share Brysons journey with CDH - Congenital Diaphragmatic Hernia- but to also try and raise awareness. I will post pictures and updates along our journey. Some may be a bit graphic and others will be him super happy. So please like the page and follow along. If you don’t know what CDH is I will be making some posts of what it’s all about.