well what can I say, write, tweet, post etc.... but that he's doing great. Better than I could have dreamed. Hes so independent, brave and full of energy.
First his doctors appt... cardiology gave him a 3 years pass. His echo, ekgs and what not are all great even after his endocarditis earlier this year. The doctor says he saws him in fine health and to return when he was 5 before kindergarten... can you believe that KINDERGARTEN!!!
Pulmonary said the same. He free to go but mostly likely will return when he started school.... he i can take that.
GI just want him to gain weight..... Well he has. he's gain about 5 good pounds since we last went to GI. He still has his mickey button but takes nothing through there. All by mouth. He's a real snacker. Snacks all day long. Love rice, chicken, and of course pizza!
He's talking up a storm. Loves video games!!! Is a daredevil ( even though it scares mommy to bits)
He's a true boy. Never stopping or letting anything get in his way. We're getting ready for the holidays. Halloween is almost here and he was to be Mario from the Mario Bros. and this Thanksgiving will be his first he will truly sit down and enjoy. Then it's his Bday in December he'll be three. WOW 3 years since he was only given a 15% chance of living. I can't believe it. God has blessed us. We are grateful.
Hope all are doing well and God Bless.

p.s. thank goodness for the autosave because some how it didn't post my blog and i thought i had to type it all over again lol

Wow its been a while since Axels last update. Well he turned 2 in December and is doing great. Hes been talking up a storm. He recently started sing the Wonder Pets theme song. Brings tears to my eyes he's doing so well. He has OT twice a week. He likes his therapist. Things are progressing slowly. He eats about 80% of his daily intake by mouth yet is still at 21pounds. He runs around so much he burns the calories just as soon as he eats them. Becoming very vocal in what he wants. Repeating almost everything we say. Also a very cute dancer!!! Gangam style is his favorite. He does the little horsey lasso move. Feeling very blessed to have him doing so well. Hope all y'all are doing great. Prayers and hugs to you all !!!

I know it's been a while since I've posted about Axel. But I'm glad to say he's doing great. He passed his swallow study, except he can't drink from a straw(something he loves) because he asparates very slightly. His weight is about the same 20 pounds. He is walking great. A little wobble but is fast and stop for no one. His big brother Jando started Pre-K in August and Axel hates it. He misses his big brother so much. But I've been taking him to the gym daycare and he is able to play with other kids even if just for a bit. but all in all he's doing great. Talking a little not much. That i know will take take. HE is med free and we are just waiting on the doctors to say he can get rid of his mickey button. Which i know won't happen since he is still small for his age. Oh well. He also had his first hair cut now everyone can stop calling saying Aw what a pretty girl. lol Hope all are well, take care (((hugs)))

Tomorrow Axel will be 18 months old. I can't believe it. He has improved so much since my last post. About two weeks ago he started walking. He is doing so well. We thought he wasn't going to walk till he was 2 years old. He just didn't seemed to want to try. But now he is everywhere. When I see a door open in the house i look towards to floor thinking he's crawling but have to raise my eyes because he is walking in the room. He is also climbing on to the sofas and the beds. Riding his ride on toys much easier and just being a boy. he's been doing so well that his PT has been discontinued. He is now over 20lbs and over 30 inches long. We hope to start his OT again after we see the ENT in July. All his dr. appts have gone well. Aside from some mosquito bites Axel is in the best health I can pray for. Hoping all is well in the CDH world Take care :)

Axel was recently switched from pediasure to Boost Kids Essentials. He's been on it about a month and what a difference those calories make. He might not be a butter ball but he sure has filled out to where one can notice it. Carrying him has become a switched from arm to arm or switch from parent to parent thing. He is getting heavier. One thing his is getting better at and i can say has mastered is pulling up. Anywhere and everywhere he is standing. He cruises along things nicely but to take a step with no one holding his hand he still doensn't want to. Who can blame him? He knows it would be total face plant. I'm glad he hasn't gotten there yet. He has had me on my toes a lot lately. Becoming a total boy. By that I mean he is rough and tough. Lunging at everything that is out of his reach, falling to the side hitting his head and getting right back up not even shedding a tear. This morning he totally surprised me by lunging at me while I was just waking up. Right in my face. I was so upset but so proud that he is getting so active. He scoots all around the house. Trying his best to keep up with his Big brother. Standing up everywhere grabbing anything on the edge of the kitchen table. I have found 2 remotes, a few cups and some toys in the toilet. ALL AXEL'S DOING. *BIG SIGH* To think a year ago he was in the NICU being prepped to have a gutbe placed. His 5th surgery. I tear up just thinking about it. My little miracle is growing up so fast. To all those just starting the CDH journey thinking it can never get better, it will and one day you'll be finding your favorite pairs of sunglasses in the toilet too. My prayers and (((hugs))) to all the Cherubs families.

It has been a little over one year since Axel has had his open heart surgery to repair his TOF/VSD. I can't believe it. This little boy who scoots around my house spilling gallons of lemonade and bags of marshmallows all over the living room was once having TET spells and passing out. He would sat to 25 or lower pass out then come back up. It was so routine I wouldn't even flinch when it happen. I would take over the nurses positions and not think twice. Now he is all about the house as if he was born with everything in the right place. I am so happy about him being able to do all that he does but am forever sad for those who never make it. Your mothers are forever in my heart and soul. Watch over them and visit them at night letting them know you are fine and caring for them.

Today was a day like no other. The morning routine was the same as always. Axel was running around on the floor while Jando slept in late. I was watching an espisode of 16 & Pregnant when Axel made his way towards me. He stands up leans in his head and lays it on my knee and says "MOM, MOM!" I looked down and was taken aback. This little red headed boy that had been only saying "DADA" for the passed few months finally said "MOM." I was so happy I looked up ready to tell everyone what he said but then realized no one was home. LOL silly me. ButI know and thats all that matters. I was worried he would take longer than normal to say it. I know Cherubs go at their own pace and I have accepted it, but still always have that hope he might do something around the preset milestone. Today he did and I couldn't be happier or prouder. Now I try to imagine what will be his next word? Jando? Grandma? Chupon (spanish for binky)? NAN (what we call food)? Nita (what we call meat)? The sky is the limit and I'm so ready for this Next Adventure with AXEL <3 MOM!

We have had lots of things going on lately. We've moved into a new house. The move was easy and Axel loves the new place. He scoots everywhere with ease. Pulling up everywhere he can get a grip. His last check up with ECI nutrition said he had gained 1lb and 3oz. in one month. It might not seem like much but its better than nothing. He has been struggling with his weight gain forever now. His being more mobile doesn't help any either. Burning all those calories. Wish I could do that, lol. He's been in great health and eating well. Taking 7.5 oz of pediasure and 2 oz of puree food by mouth at each feed. He has 8 teeth, four on top & for on bottom but really doesn't know what to do with them but bite his binky. He starts OT next week at TCH hoping they can gives me a few more tips on how to get him to eat more. Just very blessed he's healthy right now and happy. Couldn't ask for more :)

Axel has had a gtube/mickey since right before he came home from the NICU. This April will be one year. As hard as I tried to get him to eat something by mouth he wasn't having it. He passed his swallow study back in the beginning of September, but only purees. He still failed thin and thick liquids miserably. So we started slowly giving him purees. But most of the time it ended in failure. We had started therapy with ECI but soon D/C it and asked for an appt at Texas Children's. The soonest opening is in March. I decided to really take this in to my hands and do my best to get him eating by mouth. I went out and bought about $40 worth of baby food. All flavors and colors. lol. Axel was going to eat by mouth whether he liked it or not. I'm glad to say my stubbornness paid off. When he sees that spoon (plastic no metal just like his daddy lol) coming to his mouth, he spits out his Binky and opens wide. When I am feeding him by tube he wants to eat by mouth at the same time. SO happy he is realizing that eating by mouth is good. He can take about 7 oz of pediasure while eating 2 to 3 oz of baby food by mouth. Some days he can eat 4 oz. Yesterday he ate guacamole, refried beans and chile con queso. A real little red-headed Mexican boy. lol Wishing he would gain weight. HE has so much energy. Hates taking naps, and is scooting all over the place. He had to install a door to keep him from going into the kitchen and the new rule is the restroom must always be closed. The waste basket is too much temptation in both places.

Axel had been doing great. We hadn't had any big things happen. He started scooting everywhere. Now we don't have to pick him up and carry him to every room we go to. He scoots on his own there. If he starts crying wanting me he cries and scoots to where i'm at. So independent on, but getting into everything. Every new stain on the carpet is all Axel's doing. I don't mind. He starting to get fussy every time we put him in the carseat. He knows lots of things are happening out side and he can't see them. But until he can gain just a few more pounds we can turn the car seat around.
A little over a week ago, He had a absess on his right buttocks. It kept him from crawling so we had to be hospitalized and stay over night to have it lanced. Another mini surgery under his belt. Pulmonary said he's doing great and we have cut down his viagra to 3 times a day and in 2 weeks to 2 times a day. Hoping to completely get him off it soon.
It's seems this new year has brought lots of Appointments. Fifteen in January alone. Cardiology said he's doing great. Still has a whole between his right and left pumping chamber but that it was fine. Sent him home on no restrictions and we don't go back till next year. GI is still worried about his slow almost no weight gain. Trying to try some new thing going to see how they work and we go back next month. He going this week for some fitting for some SMO. to Help him with his hyper mobility. He should be in gymnastics lol. Also getting a Chest CT this week to see his right upper lobe of his right lung. It seems it just didn't develop. We've tried everything to open it but nothing has worked. We even have a follow up with genetics. I'm very excited to go and see what they have to say. He has an extra piece on his 17th chromosome. I've tried to research it but there is nothing out there. The last time the genetics doctor told me I wouldn't find anything it's so rare. But thats Axel for you always coming out with the rarest and none heard of things.
So many things to do sometimes i sit back and look at my calender and go "wow who does all this?" But i remember it was worse in the nicu. At least after these appointments I can bring him home with me. This week Axel has an appointment everyday.
God is blessing me and keeping my eldest son in great help. He hasn't needed to go to the doctor once in almost 5 months. He starts school in August and He's so ready. I know he's tired of being here all day with mommy and Axel. Locked up not being able to play with any kids. Germs Germs Germs I tell him. We can't have other kids germs in the house. He just says "OK Momma" and goes back to playing in his computer. Thank goodness for Sprout Disney Jr., and Nick Jr. online. Keeps him sane and busy.
Hoping everyone is doing great. We sure are. GOD IS GREAT!!!

It seems each time the weather changes, which is like every week, Axel gets a cough and congestion. I worried so much he might get worse and we would have to go back to the hospital and stay a few days. But luckily with a few puffs of his inhaler he breathes a bit easier. But I know this is going to be our routine till spring comes around. Then the heat which Axel does not tolerate well.
Axel has ot and pt. He does well in both. Just that in PT he shows no interest in crawling on the floor. He'll belly crawl on the bed but the floor is out of the question. Weird. So now in pt we practice standing which he loves. I pray he can walk normally and not need afo's or anything like that. Why the PT mentioned he might need them is beyond me. He's still little, he has plenty of time to learn to walk. I have always had a feeling he would probably just skip crawling and go straight to walking.
We had a surgery follow up appt on hi birthday. The surgeon wished Axel a happy birthday and proceed to show me an xrays of Axel's chest from a year ago. I almost lost time. But i took a deep breathe and fought back my tears. The xray was blurry and his body was so little. You could clearly see his intestines all in his chest and where he had no diaphram at all on the right side. The he showed me the xray that we had just taken a hour before our appt. What a wonderful difference. Yes his heart is on the wrong side, his lung might be very little, but it was so clear. No haziness in his lung or chest his patch was keeping everything in place. He also gave us the great news that we didn't have to go back for 6 months. we've been going every 2 since he left to nicu. The news was bittersweet: I'm glad was can take a break from having to go so often but at the same time not having those xrays every 2 months to see how is insides are doing is going to worry me a lot.
A year a go today I can remember clear as day Axel had 2 trial offs on ecmo and did amazing. I remember the 30+ people crammed into Axel's little room all watching the monitor and his little body to see how he did. He passed with flying colors. and was taken off by midday.
Praying for all those whose little one's are on ECMO or coming off. Yes it is hard but GOD only gives you what you can handle.

Also I know i write a lot here and on facebook about Axel. I feel bad sometimes that i don't write as much about Jando(pronounced HONDO) My 4yr old. He's an amazingly smart handsome big brown eyed boy with the most long thick gorgeous eyelashes. Always asking questioned quick to jump and protective his baby brother, and very observent. He has learned or taught himself his ABC's, numbers, shapes, colors, body parts, etcs, etcs. All before he was 4. I am amazed at all that he knows and how fast he learns. His birthday is considered late so he can't go to pre-k till next year. But i know he's ready. He says some of the cutest things you can't help but laugh and smile. EX. "Mom I'm sick *cough, cough* I need soup to make it all go away." "Momma the moon is asleep the sun is awake."(i hear this every morning.) " I'm busy Momma, you get it." (when i Need help.) He understand that Axel is fed thru his mickey button and doesn't let anyone try to give him anything by mouth. When i said i was going to give Axel a cheeto Jando said "No momma Axel can't eat that, He get sick. If i shed a tear he comes up to me wipes it away gives me a hug and a kiss and "it's ok momma. It's all my fault." I'm very sensitive, I cry for anything some times. He was my first born and his my loyal sidekick. I love you Alfredo Alexander "JANDO" you are my first true love. Never though i could love someone so much until you came into my life.
Axael Lyxander I never thought i could love 2 people so much. OR how I could get have enough love for both but I do. AN enormous amount of love for you both.
Mommy loves you my boys

One year ago today After many hours of waiting and one good push AXAEL LYXANDER VEGA came into this world, without a sound and not moving, to turn my world upside down. At 5lbs. 10oz. and 9 inches long he had all odds against him. He was diagnosed with Right Congenital Diaphragmatic Hernia, Congenital Heart Disease, Persistent Pulmonary Hypertension of the Newborn, Low Muscle Tone and a great other things. After 4 months in the NICU, 5 surgeries (On ECMO, Hernia Repair, Off ECMO, Open Heart Surgery, G-Tube placement), countless iv's, pricks, probes, blood gases, electolyte checks, intubations, extubations, CPAP's, cannulas, medications, 20 different formula changes, and hours and hours and hours of crying, screaming, and asking why Axael GRADUATED from TEXAS CHILDREN'S HOSPITAL NICU LEVEL III (Purple Pod).
He's been home exactly 8 months. Even though we've had a few scares, including a bries battle with RSV, HE'S SURVIVED IT ALL.
It's been the roughest year of my life but I've survived. Becoming stronger and even meeting a lot of great people along the way.
God has given me the honor in being the mother of a child with many needs that need to be met day in and day out. And yet to they are miniscule in comparison to the enormous love I get in return from my amazing Axael.
HAPPY 1ST BIRTHDAY AXAEL!!!!!
MOMMY LOVES YOU MORE THAN WORDS CAN EVER SAY.

this past week Axel got the sniffles. but with Axel it's just never plain sniffles. We had to be taken by ambulance the second day of his sniffles due to low O2. He was SATing 75, 76. His pulmonary doctor didn't even have to see his chart, she just said you're not leaving here today. He was admitted put on antibiotics, high plow cannula, and steroids. by the next day he was off his oxygen and feeling a lot better. We were sent home that afternoon with a few meds and told to be kept inside. He's doing great just a slight cough left over. His weight is great now that he is on pediasure and off similac. About 15 pounds. NExt month my little man will be a year. So happy he's come so far, really didn't think in the beginning he would get this far. From his 15% chance of surviving to being the happiest baby i've ever seen. :)

Halloween was great. Axel got some candy and when he got tired and we followed the group we were with in the car, his big brother took his pail and asked for candy for him. How sweet. The beginning of November has gone great so far. Looks like he really wants to start crawling but his arms still need a lot more work. Today we saw the GI doctor for the first time. All I have to say is DR. J is great. No more formula now it's just pediasure. It has more calories and can give him more volume. The doctors basic instructions were as many calories as you can give him. His weight is still under the 3%and is kind of stalling out. So we have to more on giving him more calories. Everyone is always amazed at how he is such a happy baby and always smiling. God has given me a true CHERUB. The most beautiful smile with his 2 little teeth on the bottom showing when he smiles. Tomorrow we go to pulmonary and next week we start oral feeding therapy. Hope everyone's week is going great. Lots of hugs and GOD BLESS

It seems after being hospitalized Axel is out to prove the world he can do anything. His sitting solo was ok at best now it's great. His therapist said he would n't sit till after Christmas. He loves to watch Elmo. He started saying "BABABABABABA." I tell him "no" and he shakes his head no.He can play peek-a-boo(SO CUTE WHEN HE DOES IT). He's cut his first tooth. When I bathe him he wants to be in the toddler part of his tub and not reclining in the baby part. Most of all he wants to start crawling. He's going to moving his legs down great. Considering he was born with some skinny little legs very low muscle tone, his legs now are VERY STRONG. His arm have to catch up, but he lays on the floor and tries his best to crawl/ creep. He might not go anywhere but just watching him try is so amazing. He's gained 9 ounces and grown 3/4 of an inch. All of the above said IN LESS THAN A MONTH. My older son is 3, his name is Jando. He's about to turn 4. Very protective of his little brother. Understand everything about Axel without asking questions. Very smart little man. He's taught himself his colors, number and abc's. I'M SO PROUD OF MY LITTLE MEN. Can't wait for Halloween. Going to take BOTH MY BOYS trick or treating. HAPPY HALLOWEEN EVERYONE :-)