EZRAH'S TRACH STORY - learning about the triplets (pt. 1)

[@maggiem1065]

I’m a respiratory therapist and a new mama to a 9 month old and I just want to say that you are so strong. Everything that you and the boys have been through, I’m in awe. You are all survivors and it’s just so incredible to see that strength. God Bless you all 🙏

[@ecole08]

They are the strongest people! Truly inspiring. God bless their souls

[@meganjones1326]

Thank you for sharing the story behind the babies, i am a twin and we where born in the February 1998, ment to be born May. We where 2Lb or less at birth. We where in the NICU for 9 mouths after many operations each , me including open heart, bowl, ventilation, blood transfusions, i got blood poisoning at 8 hours old. It took me almost a year to sit, walking started a year and a half with lots of therapy, many other operations. Your babies are so strong. I am 24 and still struggle. With learning difficulties, brain damage, hydrocephalus-fluid on the brain, mental health issues, physical therapy on and off, learning to talk-communting what on my mind. I still use baby blankets, (dummies- i find the sucking, soothing when it comes to depression, anxiety and sleey) difficult day to day- i can't work- mentally/ emotionally im NOT great, yet watching inspirational videos like yours are amazingly strong. Keep strong.

[@stuff1784]

You are strong ❤

[@whiteraven69]

Megan..Thank you for taking the time to write a brief sharing of your twin story . For someone who self describes the challenegs you’ve overcome , I admire your strength and courage .

[@selinamattocks]

Praying ezzy comes home soon. I think i will cry with joy for you when ezzy finally comes home. You should train as a nurse when the boys are grown up a bit and all their issues settle down, you would be fantastic nurse and have all the qualities. I pray for you all everyday and send you positive thoughts xx

[@julieannemichelle]

I love to see moms like you!!! You are so involved and educated on all of your babies and giving care too!! You and your hubby are the reasons why all of your babies thrive so beautifully!!! You’re a wonderful mom and caregiver!!

[@angelagovig1450]

Oh my word, I can’t wait to see Ezrah’s new skills! How cute to see him rolling over and pushing up!

[@ashleydanielle9026]

Girl I am literally SOOO proud of you. You are such an amazing mama to these boys. God made you their mama for a reason. I have full faith that Ezrah will come out of this stronger than ever. He will come home soon!!! 🤍

[@pollackvygotsk8205]

Just discovered your channel and am so glad that I did! You're such an amazing, awe-inspiring example of a mum. The babies are so blessed to have you.

[@ninakaiser2930]

What a great update, very detailed! My heart went out to you when you shared at the end about the Lanolin and lips that if there isn’t a Primary Nurse there they might not care as much. I am a former pediatric nurse from Germany. Here the nursing system is a bit different. But still there are always those that really care and take great care and are really thoughtful with their patients. And then unfortunately there are others. To accept and cope with this situation can be really challenging! Nowadays I am a patient myself, so I know both sides pretty well. Wishing all of your family the best - and looking forward to part 2!

[@mackenzieheavilin7563]

So incredibly proud of your strength you and Braxton have had during this. The boys are blessed with the best! Proud of how far the boys have all came! Praying for Ezzy to come home soon 🤍

[@gracieshepardtothemax1743]

I know you may not see this. But I’m compelled to write. I was a baby in the nicu for a very long time. My health and body physiology is very rare. I’m 40 now and they didn’t know if I’d make it past a year (born without an inferior vena cava, failed auto kidney transplant, collateral circulation). I understand the whole “child + consent thing”. Although I KNOW my mother would have absolutely loved videos like these if they existed in the early 80’s. I’m certain you only share what you feel acceptable to share. People who have never had to go through what you are experiencing have zero idea how helpful and encouraging these videos can be. Watch this after your video of Ezra coming home is released! Congrats little guy! Pray life only gets easier!

[@shellygreen3014]

I am so sorry your family has these struggles…you are a Rock star mother…. Many people will learn from your journey ♥️ hang in there and prayers for all your boys

[@kaylabaker6068]

I’m a NICU nurse and you explained all of that so well that I learned some new things (we don’t have trachs at my hospital)! You are an incredible mom!

[@jcwittig]

I completely agree with you on the tree tracheostomy trach is the best idea. Being a pediatric maternity nurse I have been blessed to nurse quite a few trached kids. As soon as they have a stable airway they thrive and grow so quickly. My niece was born at 28 weeks and has had a traitor in tar life She is now 22. The reason she needed hers inserted was completely different She her trachea was a dead end. Meaning that she couldn't breathe at all unless she had the trach in. We Hope and prayed for years that maybe she would be able to have reconstructive surgery and eventually not have a trach anymore. This didn't take place for 18 years but now she's still thriving she's still herself but she doesn't have her trach. It is very scary thing to be facing as a parent but it gives you and your child the opportunity be discharged from the hospital.

[@WickedlyMe328]

I can’t imagine the stress of it all. My step cousin’s daughter was a 25 weeker who was in the NICU just about 6 months. She’s 22 now. There’s hope! Thank you for sharing your story!

[@ashanismith5033]

Wow I admire you! I'm a mother to 8 children and my youngest was a 25 weeker! She has a tracheostomy also and gone through similar health journeys to all 3 of the triplets! You made me cry i can just feel your pain for your child!! Nobody know unless they go through this! Shes died 6 times now but resuscitated successfully each time! We found out at nearly 2 she has no upper airway due to intubation damage! I can very much identify with so much you say and thank you for sharing as its helped me and others in similar circumstances!!

[@aminor22688]

You really are strong! My baby girl is 10 months. She’s about to go through heart surgery #3 and we’re beyond blessed to have her home now. But we’ve been in and out of hospital 2+ months of her life after birth and surgeries. It is a hard life. It takes a lot of mental and physical energy to be “that” parent. I’ve been watching your channel since before you even had the triplets. I can’t wait to see all 3 of your babies at home! I love your channel because I don’t feel so alone. Thank you for continuing to share your journey!

[@beckyz1393]

I love the loving look in your eyes when you talk abt the boys💙 You should be so proud. Everything you have been through is a lot. It is great you are helping other families going through the same thing. Love Ezzy looking in the mirror..reminds me of his dad during your 48 hour hospital stay!🤣 Much love and hope they can all be together soon. Prayers for healing. Take care of yourself❤

[@MelissaMalzahn]

All your boys are such Lil darlings. You have to take care of yourself first, he in good hands when you can't go. You both are very strong, very blessed.

[@smokindragon04]

You are doing such a wonderful job with all the babies,hang in there mama I know it’s hard but you got this!!

[@lindahundt150]

I admire you! You are the greatest mom to these beautiful boys. You are amazing!

[@KimberlyBoyer-z8m]

You are so young to be going through so much.I will pray for you and your family !!!🙏🙏🙏

[@latassat323]

Mutations can still happen even being identical! Cells won't behave the same in every situation. That's why one identical twin can get cancer and the other won't (not your boys, just in general, there's numerous variables that can happen) love you guys always!

[@ecole08]

So inspired by you, always! Praying for you and your babies, especially Ezzy. I hope he comes home soon!

[@aquiakeewinston9082]

Yes You have educated Us on A Lot You Are Doing A Great Job 👏💯👍🏽 I had My first child at 30 weeks He weighed 2lbs 9oz 17in had a hospital stay of 30 days Thank GOD 🙏🏽 I do know how leaving the hospital without Your baby is and the visiting and taking care of Yourself to be able to go up to the hospital to take care of the baby You Are A Wonderful Mom in My PRAYERS 🙏🏽

[@kimbaxter6135]

I think y’all are doing a GREAT job of taking care of those 3 beautiful baby boys💙. I don’t know of too many young couples that would go threw what y’all do everyday to make sure those boys are safe and beyond well taken care of. God blessed y’all with those babies because he knew you would LOVE them and take care of them for however long need be. I couldn’t even imagine how tired you are at the end of the day. And I agree with y’all in leaving Ezzie in the hospital until they feel it’s safe and he’s ready to come home. No one knows the heart ache y’all go threw knowing your baby is still in there and trying to take care of brothers at home. Y’all are the best parents period in my book. God bless and continued prayers.

[@jackierose3973]

Thanks so much for sharing all about Ezzy!! Looking forward to part 2.

[@jarivs85]

Great post!! Just wanted to congratulate you for making excellent choices considering the health of the kids. Love when you talk about the boys and the bright in your eyes it's amazing. Going good.

[@Jjes89]

Go ezzy!!! And go mom and dad! Sending you all lots of love from LA

[@moneysports1793]

YOU ARE AN AMAZING MUM. ALL THESE KZbinRS THAT GET THE SHITS ABOUT THEIR BABY BEING IN NICU FOR 1 MONTH. WAT A STRONG WOMAN YOU ARE. GOD BLESS YOU AND YOUR BABIES. ❤️🙏🇦🇺

[@carriecerino8243]

God bless you and your family! ❤️ If we all could be as courageous as you!! Continued Prayers and Blessings! They are the cutest little threesom!

[@danielleayde2330]

I recently found your channel. I was a preemie myself. Technology and everything has come a long way. Wonderful family and the triplets are adorable.

[@beckyryan407]

Remember God never gives you more than you can handle. Keep the faith and your wonderful attitude.

[@mayapastrana4444]

Ezra looks so good 😊

[@adrim3749]

You are such a strong person. To have a baby in the nicu so long I’m sure is so mentally and physically exhausting especially with two other kids that do have extra medical needs. You both are doing an amazing job hoping you get him home soon. Though I did see on Instagram he had the rhino virus again 🥺💙 poor guy can’t catch a break. I’m hoping he has a quick recovery

[@suesalewski4800]

With his oral aversion my Zach didn't really eat until early childhood. The g-tube is great because you just let them eat what they want and then give them all the calories they need through the gtube . Then eating doesn't get negative. Always eat at the table together when they are older and give them food to try before you know it they will be eating. Keep it super positive. The speech therapist will help with that. My son took off in elementary school with his peers.

[@Tayona1095]

Food never goes through a trach

[@suesalewski4800]

@@Tayona1095 sorry I meant gtube.

[@janicemichaloski5292]

Your boys are all so very cute you are amazing parents 💗

[@oceanstaiga5928]

I got a trach as a teen, not for a long time tho. Ngl it did feel uncomfortable but it’s just a good solution for a longer time breathing support, definitely more freedoms for the one who has it and less risk of infection. I think it’s easier when like ezzy you basically don’t know any different, as a teen it got me scared that it could rip (I know it can’t but that fear be real lol). All the best for ezzy, my fellow trach dude! (One personal thing I was told that it will close up by itself when your young and get it out. And it did close up, but the scar looked real odd and I had to get a revision on it. So maybe in the future when he gets his out and you have a choice I’d say get stitches so it leaves a “more cosmetic” scar. Also I’m an adult now, nobody really asked me ever about the scar)

[@marykatesmith7375]

My baby girl one of my twins 27 weeker is still in the hospital ....botn less than a pound at 14 oz. She is going to be getting a trach this week hopefully. I can relate totally to Ezrah. I am excited about the trach (you know what I mean). She can be extubated but is on high bi pap settings. It's a crazy and scary life with these preemies but our kids are strong!

[@kimt1054]

I went back to watch one of your videos again but it's no longer on your public playlist. It's the one right before you delivered the boys where you were helping with a move. I was amazed at how much strength you had to lift all of those heavy items as heavily pregnant as you were.

[@skutovr]

Your boys are so lucky to have you 🤩

[@DevonLass]

I seem to remember in an earlier video that you mentioned that the twins shared a placenta but had their own amniotic sacs? If that is the case then that means that they aren’t identical. You are such an amazing mum and your boys are so beautiful ❤️

[@LadyDariaS]

She is strong 💪 ❤

[@kayleighglover2674]

I’m the one who asked about the inner cannula! The inner cannula is another piece that sits inside of the trach.. it makes sure the trach doesn’t get clogged but if the trach does get clogged you pull the trach & it should unclog it. Do some research.. not sure if they’ll do it for the little babe but I’m sure it would help if you’re worried about him getting a clogged trach.

[@kayleighglover2674]

I also don’t know your vent situation, but I’m sure he also has a humidifier. Whenever you go “portable” like when you leave the house, are you going to need any HME’s? If there’s anyway for you to message me I would love to chat.

[@mariesahota1478]

OMG IVE NO WORDS BUT 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏👊👊👊👊👊👊👊👊💗💗💗💗💗

[@susansgalaxy2219]

Sending love and prayers your way 🙏 ❤

[@Lin-dr9jk]

Your babies are just thriving I pray little Ezra gets to know a family soon..get comfort from his brothers...love from his family every day. I pray he out grows his trach and o2 and vent that someday he gets discharged its horrifying to think this baby has been kept from his family for so long...Dear God get Ezra home with his family!!!

[@tonyawilson9654]

Children’s Mercy is our son’s pediatric hospital. We have 4 teams that follow us.

[@tayblevs]

love the sweatshirt 🫶🏼

[@cecilialofgren1396]

Hi! I’m new to your channel and I notice Ezra’s head that is a bit bigger than “normal”. Why?

[@nyokasteenholdt2954]

I have identical twin brothers (they've been tested). But they are very different! There's 2-3cm difference in height, and they've had very different medical issues. Like only one of them needed braces, which is very rare for identical twins (the dentist took in the other twin to see how they were supposed to be).

[@barbaraparker9693]

Prayers always to the Fuller 5 🧑👧👶👶👶🥰

[@mykalajuhan1281]

My daughter was in the NICU for a bit and we also thought they were taking so long to make any adjustments to her care so we could start getting her home. We thought about discharging her but the social worker at the NICU said the doctors would call child protective services for discharging her. Maybe you can transfer him to a closer hospital or to a hospital that will work more to get him home. Just some thoughts I had.

[@caroletaylor7103]

Will the pulmonary hypertension resolve as he gets older?

[@griffithswife1704]

I pray he gets his trach out 🙏💜💜

[@courtneyfan9]

I think it’s so funny that you said they had to tie ezzy’s toys to his highchair so he couldn’t knock them off. Babies\Toddlers seem to love what I call I drop and you pick up game and I don’t mind playing it with them.

[@luzcortes4033]

❤❤❤❤

[@trinaogg2550]

I love hearing your story about your boys.

[@756Nichols]

Amazing family and I think that must have been a very hard decision. He's started rolling over -little star yes definitely his mile stones are amazing 🙌 oh waw I didn't realise that he would be able to get rid of his Trach 💙 I know that it easier for me to say but the people who are rude, insulting -stuff them. You two seem such capable parents. There's not a lot of advice on the internet okay I'm a mother and have a peg,Jej, Hickman line but when we looked to see if we could convince etc there was nothing our doctors hadn't a clue so yes definitely all you put on is absolutely amazing 😍🙂😃🙌 amazing idea with sign language

[@hayles023]

My nephew name is Ezra! He is currently 6 months old!

[@candilease938]

Will he always have a trach?

[@Lin-id9qc]

The settings were wrong on the portable vent that wasn’t your fault they did that to see if you would notice

[@juliebowers550]

God Bless!!!❤

[@Lin-id9qc]

I can’t believe the baby has been in the hospital this long I pray he gets home soon I feel like the nurses don’t want to let him go. I love long vlogs it’s hard to hear you..the more they suction him the more phlegm he will produce I wish you could transfer him closer or to Boston.

[@susangartman5252]

How old are the babies?

[@Missjose2023]

❤️🙏🏼❤️

[@mrspokitstheriot477]

I really wish I could find videos like this for my son's illness, or a similar one. Unfortunately it seems that most babies actually don't survive. But it was hard going from 3 healthy toddlers going into labour being told he'd be fine if he made it to labour (rare placental tumor) to having a sick baby and sick toddler and no answers (even 2yrs later) I thought about starting a channel to be that for someone else, but we still don't really have answers, just symptoms (some of which make no sense) but also I don't post my kids on the internet at all (not some moral thing about kids shouldn't be in the internet; if it were I wouldn't consume this type of content. It's because of an issue with a family member) also with living in a hotel I just don't wanna deal with negative comments. But considering how far and wide I searched for content just like this the night I was discharged and my son was admitted and some symptoms and potential diagnoses came rolling in, I have a pretty good idea of how helpful these videos are for some.

[@beckyryan407]

If you are going to teach sign language to the boys, you may want to have the nurses in the hospital start his learning process.

[@---BAM---]

❤️

[@stuff1784]

Question: I know all the boys have developmental/physical disabilities, but will all of them have mental/psychological disabilities as they grow as well? I’m curious, not trying to be rude. I am also SO IMPRESSED with your parenting skills.

[@maggiecastillo22]

I know it’s really hard to be there for your baby every day in the nicu. But please try hard because I had my baby in the nicu for 3 weeks and it was so sad to see babies alone all day crying and the nurses are amazing but they have other babies and can’t take care of one baby only. I pray for your babies.

[@ashleyk7323]

Kids don’t typically have inner cannulas just adults for long term

[@kathleenschoultz]

Hi. I am new at your vlog. You doing so good. I can imagine its very hard. You live in the US? Do you get help at home? I dont know how it works in USA. But do you get help for free when you have triplets with rare condition. If i lived in the US i would help you. I have free time all the time. I live in sweden. But i really want to go to US. Thank you for sharing your childrens story. It makes me think. That there are people like you out there, that really need help. Not just with the the triplets, but clean the home, make dinner, wash your clothes. Thank you all again. / Kathleen

[@hrose756]

I pray that your baby boy Ezrah comes home from the NICU.

[@davidasingleton8943]

Because their not consenting!? You are their consent! Their not in harms way! Those non consenting Karen’s need to STFU! I can’t stand people these Days! It takes no energy to mind you’re own damn business

[@jcwittig]

You may be putting their story on the internet out into the internet but you're not putting them and that is okay. You were not trying to exploit your kids you are trying to provide a safe haven and informational hub for other parents that are currently and in the future will go through the NICU.