Support for Baby Bexton critical heart condition

Hi. My name is Lizzie and I am writing this on behalf of myself and my family as our family has experienced an unexpected life event.

On 9/25/24 at 38 weeks and 4 days, we welcomed our sweet baby boy, Bexton via emergent c-section due to a late diagnosis of Chloestasis (liver problem in pregnancy).

After Bexton was born, he was instantly taken to the NICU. About an hour after being in the NICU, they were able to suction all the gunk off it of his lungs and realized that’s all he needed and he was brought back to me in my postpartum/recovery area. The pediatrician came to speak to us to let us know at this that time, they did not have any concerns but they did hear a heart murmur while doing his evaluation. They explained this can be common in newborns and it can take up to 24 hours to resolve. If after 24 hours, the murmur was still present then we would follow up with an echocardiogram. But from that standpoint, he looked beautiful and healthy.

A few minutes later, as we were still in the postpartum/recovery area, Bexton was making what we thought were normal baby cooing noises. The nurse had advised that they call this “baby singing” and although it’s cute, they don’t like to hear it. They said it means the baby is working harder to breathe causing them to make these noises. She advised us to keep an eye on it and if it persisted to definitely let our postpartum nurse know.

We finally made it to recovery room and everything seemed to be doing well. Bexton was latching and eating great. Our family came by to say hi to the newest addition and we were all hanging out. Bexton continued to do the “singing” but very periodically. My sister had mentioned she noticed his fingernails were darker colored and she had googled it and it was a sign of decreased oxygen.

We again, mentioned this to the nurse. They did vitals on Bexton and everything was still looking great from vitals perspective. They just advised to keep an eye out.

As the hours went on, we noticed Bexton had a little blue tint around his lips but they weren’t overly worried as he was just born and sometimes can take awhile for baby’s to get their color, etc, Vitals still looking great.

About an hour went by and Bexton had increased his “baby singing”. Dad spoke up to the nurse and said he didn’t feel as if something was right. She checked vitals again and everything appeared normal. He had asked for them to do a more thorough check to make sure everything was indeed okay. The nurse proceeded to do his vitals and check his oxygen this time. She couldn’t get his oxygen level over 40! She called her charge nurse and they switched out the machines, proceeding to see if it was an error. They were switching around where to try to find his oxygen levels at with no success. It was staying between 40-50.

They immediately called the NICU and rushed him downstairs. Dad was able to go be with him as I was not able to get up from just having surgery a couple hours ago.

About 15 minutes go by, they come back and tell me Bexton is admitted to the NICU.

Another 5 minutes go by, the tell me Bexton is being intubated immediately.

They ask if I am willing to have a team come in to safely transport me to a wheelchair so I can go downstairs to see Bexton. “Just in case” “we don’t want you to have any regrets by not being able to see him or be by him”.

I finally get down to the NICU. Dad is outside the room and there are about 10 people in the room surrounding Bexton and assisting in getting him intubated.

After the neonatologist had successfully intubated Bexton, she was able to come out to talk to us. She informed us Bexton was being transferred immediately to OHSU NICU as they have specialists that are able to help him through this process.

She didn’t have much answers as to what was going on as she didn’t have the special equipment that would determine what they were suspecting/wondering what was going on. She was able to obtain a chest xray which she said is not a through diagnostic test of the heart but it would help see what could POSSIBLY be the issue. She explained to us that Bexton’s heart was significantly enlarged and that a “extra hole” that babies have in their heart when their born was closing. She suspected from the xray that it looked like one of his normal valves were closed and this was what was causing the decreased oxygen. Again, we weren’t for sure and everything was placed in OHSU NICU hands. Baby was transferred to OHSU NICU and dad was able to ride and be with him the whole night.

Since I was still admitted as a patient, I wasn’t able to go and had to stay as an inpatient at Kaiser.

Moving forward, I was able to be transferred as a patient to OHSU so I could recover and be able to be there with baby.

After what seemed like an eternity of a night and day, we finally were able to meet with cardiologists.

They officially diagnosed Bexton with critical pulmonary valve stenosis.

They wanted to do emergency surgery the next morning. Based off of his echocardiogram, they weren’t 100% sure if they were able to do a less invasive surgery or if it would have to be an open heart surgery.

On 9/26/24 at 9:00 AM, Bexton was taken back to the OR for a less invasive surgery. He had a wire placed through his groin that was fed into his heart to build a “ballon” to be placed to allow his right stent to stay opened. After 4 long hours, he made it out of surgery and everything went well.

Bexton was able to be extubatne yesterday afternoon and placed on a low level of CPAP. His oxygen levels have fluctuated and they have went between level 5 and upped him to level 6 CPAP level. He is on a medication called PGE that allows that “extra hole” in the heart that everyone is born with, to stay open to ensure that the procedure is successful and his heart can properly function. This can take weeks up to months, it just all depends on his progression and how his heart reacts.

His heart has to learn how to properly function like a normal heart would since in the short time of his life, his heart has had to work extra and his body doesn’t know any different.

Bexton is on a medication to help relax his right valve/muscle on the heart. This medication can take also a few weeks to help him safely come off all the other medications and allow him to be released from the hospital.

Bexton is still in the OHSU NICU in critical care and is anticipated to be here for awhile.

As we don’t know what our future is going to hold in regards to this diagnosis and what we will have to do in our future, we are staying adamant our boy is going to pull through this and come out stronger than he already is.

Thankful to dad and my sister for looking out for Bexton. And so incredibly thankful for dad for speaking up and saving his life.

We are putting this together just to ask for additional help during this time for our unexpected medical bills we are going to be occurring. Along with just trying to keep everything else afloat this time.

Anything helps and is so appreciated. Even a quick prayer.

Thank you all SO much. ♥️