The Vega Family

Scroll down to see updates as the Vega family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Update 6/22/23

I am opening this for the second time in tears as I genuinely did not think that I would be accepted. I appreciate this greatly, I feel like any words that I can put together in a sentence are just not enough. After all is said and done and I recover from this financially I hope to be able to donate as much as I can and as often as I can as I want to help anybody going through this as well.

I had originally opened this around midnight on the 22nd, also in tears, shortly after having my surgery getting the FETO balloon on the 19th. Though I am healing, well I am terrified. I had my daughter at 19 years old and will hopefully be 22 when I have my son. Nothing could have prepared me for the emotional wreck I have been after receiving my MRI results finding out my son is in the severe category. Nothing could have prepared me for having a child with this kind of birth defect as there is so much that goes into it. I would be so happy to give a better statement/more pictures when I am in a better place mentally as all I have running through my head on a day to day basis is panic not knowing what/when things will happen after receiving this balloon so recently.

I decided to name my son Noah, it was a name that absolutely melted my heart the same way my daughter’s (Nicolette) did when I first heard it. 

Update 7/20/23

I am writing to you from the hospital at 33w2d pregnant with my son Noah. My membranes ruptured prematurely on Sunday night while I had the fetal balloon in my sons trachea placed still. The drs were able to stop my labor in perfect time to do the fetal surgery to pop the balloon however labor has not started back up. There’s talk that I may be induced around 34-35wks though there is nothing set in stone as they're trying to keep baby in and growing as long as possible to make his surgery to repair the hole in his diagram as easy as possible on him. Honestly it’s been so rough mentally stuck in a hospital bed so far away from my almost 3 year old daughter and it took me a few days to come to terms with all of this, though the days are not getting any easier for me I am getting through.

I’m so happy to let you know that we started this whole process pre fetal balloon with an o/e total lung volume of 21-23% with 39.3% herniated liver. According to my MRI on 7/12 we are now sitting at an o/e total lung volume of 68.2% with 45.3% liver herniated. 

My son’s lung capacity has TRIPLED in a few days shy of a month, I saw his left lung for the first time EVER and I could not be more grateful. We are sitting at a good 4 1/2 lbs so he is big enough for ecmo if need be but drs seem to think he will be able to cry when he comes out and fingers crossed he will be good on a ventilator! Yay!! Now I’m in the home stretch of this pregnancy just waiting for baby Noah to decide when he wants to come out and until then I will be in this hospital bed.

Update 7/28/23

I figured I’d send my second update this month as I wanted to let you know that my son decided we needed to share a birthday today which is so exciting! He came into the world at a good 5lb6oz at 11:09am, I was 34w3d pregnant and he made it through 11 full days after my membranes ruptured prematurely before he came. He is ok but he is struggling to breathe as they’re still trying to stabilize him on a ventilator, with that being said he did not come out crying unfortunately it was just too much for him. He had his last echocardiogram at 4 today so I’m hoping to get good news with that as last time he was borderline needing a heart surgery. I’m hoping they can get him stabilized soon and hopefully sometime in the next week or two we can figure out a surgery date to get him on the road to recovery unfortunately ecmo is not off the table as he is struggling still. 

This is my son Noah Vega and I am so beyond grateful to be able to welcome him into the world, I would greatly appreciate all the prayers he can get right now as he needs it so much. Thank you SO much and god bless everyone reading this update!

Update 7/30/23

I just wanted to update again and let you know that my little Noah got put on ecmo yesterday and we are currently waiting for his surgery to repair the hole in his diaphragm which will be at some point today. He is in the best hands he could possibly be in and I believe that with my whole heart. 

I was warned about all of this possibly happening but truly no matter how many months you spend mentally preparing yourself for what’s to come, it all goes out the door when it all happens. My body is in complete shock and myself along with my family are all hurting so badly. 

Update 8/4/23

Just wanted to let you know that Noah turned a week old today and I got the call early this morning that my little Noah kicked ecmo’s butt!! He is getting his surgery to get taken off ecmo as I’m typing this. His lungs have had such dramatic differences every single day and he’s finally been able to eat my breast milk through his feeding tube. I am so grateful and I genuinely needed this to keep me going, this whole last week has been so hard but I have never lost hope. To celebrate, here is a picture of him from yesterday when he heard my voice. It was the first time I was able to see his eyes as he has been so sedated. 

Update 8/27/23

This month he kicked ecmo’s butt along with the ventilator, cpap and the high flow oxygen. He healed from all 3 of his surgeries very well with minor bumps in the road. He struggled with svt however he is stabilized on medication for that. Noah is now on the low flow oxygen and he has been trying to bottle/breast feed (which ever one he takes to better we will do). Unfortunately the last few days he has been exhausted from the oxygen change and starting the bottle feeding so we have been giving a lot of his feeds through his feeding tube and letting him rest and recover. Monday he has an echocardiogram to see if his pulmonary hypertension has been able to heal. 

I haven’t heard anything about a discharge date yet or what it will look like as he has been having a bit of a hard time eating. 

This situation as a whole has been traumatic and exhausting- I am so grateful that my son had only minor issues and healed well however it’s been too many changes in the last month for my mom heart to handle. I am still working on finding some time occasionally to try to process everything that has happened and all of the scary things I have seen but it will take time.  

Here are some pictures of my family from the last few weeks- big sister Nicolette has been a HUGE part in all of this, she truly loves her baby brother and can’t wait to take him home one day!

Update 10/1/23

I am terribly sorry this is so late it’s truly been the hardest last few days. I just wanted to let you know Noah got discharged 3x this month and tonight we are getting life flighted back to Houston. Waiting on the flight as I am typing this.

Long story. Lots of highs and lows. I will send more of an update when I know more of what’s going on after we get back to memorial Hermann and as of right now I know nothing other than my son cannot oxygenate his body and he is breathing in a lot of co2. Thank you for your patience!

My little Noah’s right lung is collapsed. They are intubating him and placing an arterial line. They still don’t know what is causing this all. Currently trying to find a place to stay down there- Ronald McDonald has a long waitlist right now.

Update 10/14/23

As you know early morning on October 1st my little noah had to be life flighted back to Houston, from there they intubated him and placed an arterial line. When he was admitted his right lung was completely collapsed and his carbon dioxide levels were in the low 100s.

Noah also has severe pulmonary hypertension which this hospital stay they got him on a higher dose of his sildenafil to help with that. As of his last echo it hasn’t changed however the heart takes a long time to heal. No change is a good change though, meaning it’s not getting worse!!! A win I will celebrate.

Noah spent a few days on the ventilator and then a few more on the bipap, yesterday he was moved down to avap and if he does good on that they will likely keep him on that for a few months as his lungs and body grows.

As far as I know we are just waiting on some growth so he can get strong enough to breathe with less help.

As he grows and the weeks/months go by in the hospital and Noah is in a more safe spot they will address his feeding problems as we think he is still aspirating via reflux with his g tube in his belly. Right now they are bypassing his stomach and he isn’t having any problems but it is unsafe to do testing as of right now as he is still on a high amount of pressure from his oxygen.

I noticed that Noah loves Spider-Man and is very drawn to the color red. I have been working with the chaplain at the hospital who visits him every time he wears a bright red shirt to work. Noah has a Spider-Man that sits next to him in bed at all times to calm him and I am actively looking for a bright red Spider-Man shirt to wear every time I visit him.

Unfortunately we will never know what caused the event at home to happen however Noah is still here & fighting as hard as he can and for that I am forever grateful. Thank you all for the prayers!

Update 10/25/23

We talked to Dr. Harting yesterday and found that Noah’s bowels are pushing back up into his chest. Noah will have his surgery Friday, if not then Monday at the latest. It is mild for now however this could be causing his breathing problems at the moment. 

During the time of his repair they will do a fundoplication to stop Noah from aspirating on his reflux. 

I am so hurt. No parent or child deserves to have to go through any of this :(

Update 11/28/23

Hello! Noah is doing ok and growing so fast. Not much of an update this month, Noah spent the first few weeks of the month healing from his surgery as his bowels found their way to past the patch in his diaphragm last month. They got Noah all the way weaned back down to low flow and he did great for 3 days but on the 4th day they think he got sick. Tested negative for everything they test for however there was no doubt that Noah needed a break. Chest X-rays got cloudy etc. 

They switched his feeding to bolus feeds instead of continuous and they also switched him to formula only. The stress from this admission has tanked my milk supply and I have been trying not to be too hard on myself about it. Noah got moved all the way up to BiPAP about a week ago and now they are weaning again. He is on cpap currently and doing great! There is no talk of discharge yet but we have all agreed to let Noah take as much time as he needs in hopes to come home safely this time! 

Update 12/3/23

I wanted to let you know that Noah is now intubated and sedated. We are unsure of what is going on however they think something triggered Noah’s pulmonary hypertension. Today his o2 went down to the 20s and they had to bag him. 

Update 12/5/23

Noah had to be resuscitated a few days ago. We’re not sure what caused it but he had a pulmonary hypertension crisis and his pulmonary hypertension is now severe again. He is intubated and sedated now. Waiting on a lot of tests to come back as they think he may have an infection that triggered this all. 

Update 12/7/23

Day 131 of fighting. I wanted to let you know we got one answer, he has tracheobronchomalacia (TBM). It is still a very new diagnosis so I am unsure of what it means for Noah and his oxygen needs for now, however we are still waiting to get a cardiac catheter done hopefully next week. This last episode of him crashing really took a toll on his pulmonary hypertension, instead of being mild to moderate like he was he is now severe again. They said his trachea is weak and collapses on itself without pressurized oxygen, so I am wondering if this could be caused by fetal surgery as he had the balloon in his trachea. I did bring up my questions and am hoping this could maybe help out the research that goes into a procedure like the FETO balloon, of course if it is a possibility! Any little bit of research that my son can bring to the table when it comes to CDH or even the FETO balloon is so amazing when it comes to helping other families and I am truly so thankful. 

Update 12/29/23

Noah is doing well. The cardiac catheter went good. His pulmonary hypertension is severe again however not as severe as the drs thought it was. The cardiac catheter also showed that Noah’s pulmonary hypertension responds well to oxygen and his medication so essentially we didn’t get any more information from that procedure than we already knew which is ok. I’m upset we did that procedure to not know anything more as the risks were so high (one of which being ecmo), however I am happy his heart is doing as ok as it can be for the situation and that there is nothing further going on. Noah was successfully extubated the following week after the cardiac catheter and he had some struggles but he is now on a pressurized cannula during the day and cpap mask at night. His co2 ranges from the low 50s to high 70s and it’s not making much sense to anybody because he used to sit in the 40s-50s. 

He also looks amazing even when his co2 is very high and before when he would even hit the 60s he would look like he’s struggling.  They have been weaning his sedation down to see how he does with the mask at night as he does not like that mask so it will take some getting used to. Noah is now strictly formula fed, so they are switching his feeds to bolus over 2hrs to see how he handles it along with his new formula as he does not need the high calorie like he did before. He is 5 months old and weighs 12lbs now!! Now that the hard surgeries are over he has been able to gain weight well. 

Yesterday 12/28 we finally talked about discharge and we are hoping to go home hopefully mid-late January. At home equipment has been ordered from what I heard but it’s a long process with insurance to get a trilogy machine from what I’m understanding. It is going to be a process to learn the at home equipment and get comfortable with the thought of taking him home after me finding him blue last time but everybody at that hospital is more than willing to keep him not only as long as medically necessary, but until I am comfortable to take him home as well and I am grateful for that as I don’t want to rush Noah by any means and I want him to be safe at home this time. 

We all agreed going home on cpap to let him grow is the best decision for him as of now, so there will be another hospital stay or two to wean him as he grows. 

Update 2/1/24

We have been home 2 weeks now!! Noah is on cpap full time via a ram cannula and is doing amazing!! 

It’s been super overwhelming since insurance won’t cover a lot of services Noah needs but we are doing our best to figure it all out. Noah has been denied for Medicaid a few times now but that sounds to be the only way we will be able to have a nurse, g tube care, physical therapy, speech, and occupational therapy. Insurance also doesn’t want to cover his sildenafil prescription for his pulmonary hypertension so I have been extra busy applying for every program under the sun to hopefully get him on Medicaid. We finally got Noah’s RSV vaccine and his 3 month shots (he just turned 6 months so we will get those in 1 month). We also found out Noah is not only teething but has an ear infection. 

In a whole, Noah is doing fantastic. He is breathing well and so far no major concerns. Noah has been happy, Nicolette has been happy, all is ok in the world right now and it’s still hitting me that at 6 months old we are finally home. 

Update 3/31/24

Late at night on 3/27 Noah started desaturating at home, o2 was around the 80s and he was working to breathe. I raised his oxygen and after contacting Noah’s pulmonologist to let him know, I took Noah to the ER in Lindale and from there they did an X-ray and confirmed a CDH recurrence and after waiting all night we got on the first life flight to children’s memorial hermann. Tomorrow will be his 3rd CDH repair. He has desaturated many times, however he is stable on the cpap mask for right now and we are hoping to get through how we are until surgery tomorrow. 

I am terrified, however Noah is under so much stress right now I can’t wait for him to get better.. 

Update 4/2/24

Noah’s surgery went very well! He has two patches now, his surgeon did everything he could to try to make sure this doesn’t happen again. Noah’s specialists have been absolutely amazing supporting not only Noah but me too. Nurses have been AMAZING as well. Noah has been having a hard time keeping his lungs open today, so we will not be extubating today. Noah has also been fighting off many sedations. My mom heart hurts badly but I know this is a rough patch and we will get through this. I wish I could take all of the pain away from my little guy. 

Update 4/28/24

Noah had his 3rd CDH repair on the 1st of this month (though I wish they just said April fools instead). Repair went great! Noah got a few infections in his trachea during the healing process and that slowed things down a bit and caused a lot of scary episodes, but all is well now! Noah just got extubated last Wednesday and he didn’t seem to like the cpap mask so we quickly went to the cannula and all seems to be stable in that department. 

Now we are working on getting him off his sedations with as few withdrawals as possible & we’re also working on getting his feeds back to normal!