Introduce You and your trach Baby

Tonya - posted on 11/15/2009 ( 64 moms have responded )

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Hello! My name is Tonya and I am the mother of a beautiful little girl named Elly. She is 20 months old and has had a tracheostomy since 3 weeks of age. Elly was born 4 weeks early (36 weeks) with a small chin and a normal size tongue, as well as other issues. She did not have control of her tongue and would block her air with it causing breathing difficulties. Although Elly has had many tests, her doctors have not been able to come up with a specific diagonsis or syndrome. At this point in time, she is unable to swallow and has a feeding tube as well as the trach. I set this community up, in hopes to find other mothers going through similar situations as mine and I would love to hear your story. Please feel free to ask the other members of this community or myself any questions or for advice. If you need to use this community as a sounding board just to get things off your chest about the frustrations you feel towards doctors, hospitals, family members, or people who just don't understand what you are going through, please be my guest. After all, we all know how difficult and stressful life can be. I hope that we are able to help each other through this time in ours lives. God Bless and best wishes to all!

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Jessica - posted on 06/09/2012

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I am sooo happy that you had made this page!!! I was so nervous thinking I was one of the only moms that would have a trach baby. My son was born 3 months premature and has chronic lung disease, and the top of his trachea clamps down. Yesterday he had went in for surgery and I was such a nervous wreck! I was wondering when it gets easier, and how long does it take to get the learning of the trach change and suctioning down? I am so nervous, and I dont want people to look at me like I had done something wrong for my son to have a trach.

Joy - posted on 03/13/2010

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Hi! my name is Joy and future husbands name is Chris. We have a beautiful boy who is now a year and almost 2 months. We knew when he was going to be born he would have a heart defect as well as a multicystic kidney. unfortunatly He too was born at 36 weeks. but when he was born he wasnt crying or breathing and as soon as they put him on a breathing machine , first they thought he had a cleft palet and finally after about a month of not knowing his problems,other the the heart and kidney, they Diagnosed him with CHARGE syndrome. Charge syndrome is a very complex and rare gene disorder. because of the problems they have each letter of the word CHARGE, standing for a defect. the C stands for Colaboma, which bentley has in his left eye, H stands for heart which was his tetrology of Fallot, A stands for choanal atresia, which means he has a blockage in his nose. (which is why he has the trache as well as a Gtube to eat) R stands for renal problems...which he had a left multicystic kidney but it has descentigrated now and the cists have moved to his bladder. so he will need another surgery. The G stands for genitals which didnt affect him but when it does affect a baby normally boys have very very small penis's and girls have abnormal clitoriouses. And last the E stands for ears, which is hearing loss. Bentley has mild to moderate hearing loss in right ear and severe hearing loss in his left..but another thing you may not know is when they talk about the ear its also well known by the look. kind of like an elf ear but more round. the lobe isnt developed correctly. He also has facial palsy on the left side of his face. But he is our miracle. I wouldnt trade him for the world.I joined this part of circle of moms because I to feel alone when it comes to our situations, because there is no one around here that ive seen with the same problems. even when he was in the ICU in birmingham there werent any babies with all these problems at once either. I think the whole 5 months we were there, there was only one other trache baby and it was a girl. But to all those moms out there who just read this; and may be going through the same thing,Try to keep in mind that God isnt punishing you, God wouldnt put this child in your arms if he knew you couldnt handle it; there arent that many people in this world that can take car of a baby with special needs and that can deal with the stress and frustrations, back and forth to hospitals, easy sicknesses,and just pretty much learning to adapt to a whole new world But God could see the love in your heart and knew you before anyone else could be able to love such a beautiful gift and get more love than you ever expected in return. But if someone hasn't told you and being one who needs encouragment on bad days too, I am so proud of your dedication and love to your child through the easy and hard times. not everybody and do it, but God would NEVER give you something you couldnt handle. Just think of all the unconditional love you will always get in return for even some of the smallest things....even if its just a smile. thank you for reading comment if you like..i would love to meet more moms in the same situation as me!

Joanna (Asia) - posted on 12/15/2009

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Hi Tonya, thank you for starting this community . My little girl ,Monika, is 18 months old now and she's also g-tube fed and has tracheostomy due to undiagnosed issues. She was a full term baby developing well in the womb but after she was born it was found that she doesn't swallow, and she produces excess amount of secretions that blocked her airways. Also she had a central hypotonia,and complete left and partial right vocal cord paralysis. And so far no we have no name to the condition she has, after all kinds of tests; genetic, metabolic, MRI only showed some congenital changes in her brain called Cortical Displasia, which will be reconfirmed again when she turns 2 years old.Your Elly is sooo beautiful, almost looks like my Monika:) I just have a question for you, did you get any kind of immunization shots during pregnancy? The reason I am asking is because I did get a flu shot in my third month of pregnancy, and just can't help wondering if it has anything ( if at all) to do with Monikas issues.I even started a Conversation as my little research, to hear if other moms who took a flu shot in pregnancies had any problems in pregnancy or their babies after being born.

Anyway , nice to "meet" you. TTYS again:)

Joanna.

Brandy - posted on 10/23/2012

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Hello, my name is Brandy and I am the mother of a beautiful little girl Kennedy that is a trach baby because she a has narrow windpipe when she was born September 18 2012 . I also have a little boy he is 6 years old but he doesnt have a trach. I'm just wondering how did you all have kids and introduce your baby to your child to make them understand what's going on with their sibling so they would understand. Also due to her trach I decided to have a after shower as opposed to a baby shower that I will be having on Nov 3rd 2012 wondering is their a way to incorporate my baby without her being actually there and also let people be informed about her condition because I always say knowledge is power and I want people to know that she is not different then any other baby she just has a bit of precaution so if anyone on here that can offer up any ideas on this please email me at Brandyisme26@gmail thanks so much any and all advice is welcomed thanks alot:).

Tonya - posted on 06/13/2012

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Hi, ladies!! I'm so glad that you joined us! Since The circle of moms app can be some what time consuming to get to, I have created a page and group for our community! Please feel free to join us there as well! The links are: page - www.facebook.com/momsoftrachbabies and for the group - www.facebook.com/groups/momsoftrachbabies
Both of these are more activity than this community as well :)

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Marci - posted on 08/17/2014

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Hello I am the grandmother of a baby boy born with congenital problems. A trach was placed on his 8th day of life and he was 5lbs 9ounces. It would be very helpful to be able to communicate with other parents I'm not tech savey and I'm not sure how to become part of this group? I hope this reply section will get some notice My name is Marci My email is gillettking58@comcast.net

Shameka - posted on 06/28/2014

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Hello everyone! I am the mother of a beautiful, feisty little boy named Roman! He was born at 26wks. My husband and I have been traveling an hour and a half everyday for the past 4 months to see our little man and be with him every step of the way. He has chronic lung disease and has been unable to wean from CPAP, therefore he is requiring a trach. We just signed the consent form yesterday which was the hardest thing for me to do. I am a Respiratory Therapist so most feel that making this decision and caring for him at home will be a breeze. But its not by any means. With family and friends involved I still have feelings and emotions that I feel no one else can understand unless they've gone through this for themselves. With that said, I feel alone most of the time. My husband and I are "praying preemie parents" we've made it this far only because of God. It feels better being able to get my story out there and knowing there's a community of moms that know exactly how I feel. May God bless you all and your sweet little mircles!

Jennifer - posted on 03/07/2014

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Hi Tonya! Please forgive me if you've already gotten this comment but my daughter has the same thing and they call it pierre robin syndrome. She was full term at 37 weeks and got her trach at 3 days. She just had a gtube placed at 40 days. The conditions with pierre robin are small chin, difficulty breathing, and a cleft palate. My daughter also falls under moebius syndrome because she has a 6th palsy of her left eye and was born without ears in addition to the PRS. Her name is Jocelyn Everly which means 'rejoice always'. Sending love to all you moms as you face these challenges. :)

Ashley - posted on 07/26/2013

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hello everyone. im ashley. the mother of mr jerome wyatt jr. he was 2 months early and was ventilator dependent for 3 months off and on 3 different times. they then decided that he would greatly benefit from a trache, and g tube. he is now 5 months old, almost 6. he is still at the childrens hospital that he was sent to at birth. he started in the nicu, and has been in the imcu for almost a month now. he is getting closer and closer to being home. just a few more obstacles and hes free. lol. but honestly, he is my first child and i dont let my emotions show, my sons dad is so paranoid, he doesnt always understand my worries and constant want to be the only one taking care of him, or liking things a certain way. so i found this site to maybe gain some friends with my similarity. thanks.

Bekki - posted on 06/20/2013

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Hello!
I had a baby with pierre robin two weeks ago and he now has a trach. I would love to pick your brain! Please let me know if you wouldn't mind me hearing about your little girl and asking you for advice on how to get through the day to day at home :)

Bekki

Tiffani - posted on 05/16/2013

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My name is Tiffani I have a handsome 10 month old name Caleb. Caleb spent the first 3 months of his life in the nicu where the drs couldn't figure out why he wasn't breathing when he falls asleep. So at 2 months he was trach. Later we found out he had congenital central hypoverlation syndrome or cchs, which is very rare. He has to be on a vent 24hrs of the day as of right now. At first it was hard but its so easy now I love being this lil guy's mom. My only worry now is how long will it take him to walk?

Anna - posted on 04/10/2013

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Hello, my name is Anna. My son Adam is now 4 months old, he was born just in time, however he had difficulty breathing. It turns out he has bilateral vocal cord paralysis, so he got his trach at the age of 2 weeks. Then he spent 2 months in the hospital, he was trying to learn how to eat. Happily he did well and now we are home. If anyone wants to contact me - please feel free to do it)) I wish you all the best and health to your family and your babies.

Brittany - posted on 03/26/2013

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I have a Very similar case.my baby was 8 weeks early n born with a rare disease.she has no left eye, no left ear, cleft lip n pallot, and her brains under developed.she also had a tracheostomy bc her tongue would fall into her throat.she just got home n we to have to feed her through a feeding tube.Im okay with the extra things she needs i love her no matter what, i just really hope she strong enough to keep fighting n never give up.

Orla - posted on 01/16/2013

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Hi, I have a little boy Cian, who is a year old tomorrow. It's so nice to find Mums who understand as other people just don't get it. Cian was born 10days overdue by emergency section. It is still very raw so maybe eventually I'll tell the whole story but since me and my husband are still going thru it. Cian has never been home, never in his lovely yellow nursery, he has spent the first year of his life in hospital and still counting! Hopefully I will get him home by his second birthday ! Cian got a TRachy at 3months old, they couldn't figure out why he kept on arresting so they decided this was the best way to maintain his airway. Cian also has some kind of syndrome, he is missing his left kidney, his anterior Pituitary Gland which causes huge hormonal deficiencies , he has Pulmonary Hypertension, Pulmonary Stenois and left Broncomalisia and is on Cpap. They only found out about the Broncho Malisia at 8 months old, they put him on a Ventiliator in June because he kept arresting. I told them there was something wrong with my baby but no one listens to the mother! When I read the other woman's stories I feel I can keep going! It's very hard, yet our little people keep smiling so we have to try !

Colleen - posted on 11/22/2012

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Hello everyone! My name is Colleen and I am the mommy to Zoe Isabella,who has a trach and a GJ tube.She is about 4 months and 6 days old. She was born at 28 weeks, weighing 2lbs 7ozs. Zoe suffered a loss of oxygen 2 hours after birth and as a result, has some damage to her brain and nerves. She cannot suck or swallow and has an absent gag reflex. She spent 159 days (4 months) in the NICU and is now at inpatient rehabilitation for another 10-12 weeks before coming home. Zoe was on bipap ventilation for most of her stay. She has difficulty managing the secretions in her airway and protecting her own airway. She was struggling to breathe even with the bipap. We just got the trach done 2 weeks ago and she came off the ventilator the next day! It was a very hard decision but we did make the right one. Zoe is breathing on her own with the trach and is not struggling. She is so much more comfortable. It does suck that you cannot hear her cry but she is starting to squeak out the trach when she cries! The inpatient rehabilitation is the next step before we bring her home. This gives us time to learn how to care for her trach and gJ tube. And it's also to help Zoe to get stronger so that she can tolerate different positions and such. We are in the process of interviewing with home health agencies for private duty nursing.

Huguette - posted on 09/12/2012

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Joy Patterson: My son (now 2 years old) was diagnosed with choanal stenosis.. originally, they thought he had the CHARGE syndrome. He has a trache, as you mentioned because of the nose blockage and he has the g-tube because of course, he can't breathe so he can't feed.



My baby has gone through so much. He was intubated several times, had a seizure due to lack of oxygen, had 5 nose surgeries in hopes of opening up his airway and .. after a year of suffering, they finally trached him.



I always blame myself because I wasn't educated about this. I know now that my son should have been trached from the beginning rather than having all these surgeries and losing oxygen to the brain.



I read all your stories and all you mommies are brave, full of love and hope. Keep your head up, I too hope it gets better. My son may be decannulated in 3-4 months - I'm so scared about that though.



~ Figueroa Family

Tonya - posted on 09/10/2012

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Hi, Momas! We have a facebook page and discussion group set up now. I would love for you all to join us there. It is much easier to access and a lot more active.



Please join us on our fan page at http://www.facebook.com/momsoftrachbabie...

And in our discussion group at http://www.facebook.com/groups/momsoftra...



We have contests for giveaways frequently and we have over 300 members there. With more requesting to join or being added each day!



I hope to see you there :)

Emily - posted on 08/07/2012

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Hello! My name is Emily and I have 2 beautiful daughters. My oldest is a happy and healthy 3 year old and my youngest is going to be 9 months old this week. She has been through a lot in her short life...more than I could have imagined. I was induced at 38 weeks due to a "missing stomach" on a normal 37 week ultrasound. I had no idea anything was wrong up to that point and we were not sure what was going on. After having her, we found out that she had the Pierre Robin Sequence (smaller jaw, cleft palate, and tongue displacement). She was unable to swallow in the womb due to the airway issues and was 4 lb. 13 oz (not too bad actually). She was immediately transferred to the NICU where she stayed for about a month and a half. In addition, she has a paralyzed right vocal cord, and a smaller medulla (brain stem) on the right side. Her lungs are fine and she was able to breathe on her own, but she was trached at 3 weeks old to protect her airway because she could not swallow. She also received a gtube at the same time and a nissin for any reflux that she might encounter. We finally brought her home (and were terrified to do so) and of course the next day we were back in the ER for three separate trips over the three next days for her feeding tube falling out. It was actually just a catheter at that point because she was too small for a gtube (mickey button). About a month and a half later she had a cold and we had to go back to the hospital for another month and she was put on a ventilator. Her oxygen wouldn't stay above 90% and her heart rate was going above 200. I was scared out of my mind. The docs put her on a ventilator mainly because she has always breathed fast for some reason (normal breathing for her awake is anywhere from 40-80 breaths per minute). No one knows why, to this day, that she breathes this fast. They figured the vent would help control this. It has to some point, but she still can breathe without it. She does not require any oxygen, which is great. Our latest admission to the hospital was due to a very bad inner ear infection (which doctors didn't see the 2 times I took her to the ER earlier that week) that went into her skull. She had a fever for 10 days and no other signs (no increased secretions, or drops in oxygen, just an increase in heart rate that coincided with the fevers). It was an epidural abscess and required immediate surgery to scrape it out and put in a draining tube to drain the abscess. This infection caused a blood clot in her head and now she is back home and getting antibiotics via an IV line (picc line) and lovanox shots 2 times per day for the blood clot. I never imagined I would be changing trachs, trach ties, suctioning, giving shots, and now adminstering antibiotics via an IV line but here I am. I am so proud of my little girl who smiles through it all. She is a true inspiration and I could not love her more! If anyone has a similar situation or has been through something like this, I would love to connect! I work full-time and am a mother of two and find it really hard to find the support sometimes since most people can no relate. Thanks and I hope to hear from someone soon.
Emily

Tiffany - posted on 07/12/2012

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Hi everyone, My little girls name is Brooke and she has a trach and gtube. she was born 36weeks. she has been on a ventilater since birth and a gtube since 2 months, she has a condition called Mitochondria (not sure which type) She has week muscle tone in her diapram (cant spell) and in her legs hands. She will be 3 in Nov. She also has hip Dyslpaysa and has had 2 surgeries so far on them. and has 1 surgery for her back she had a 60 degree curve from scolisosis. she was my first child and it was very hard to hear what the drs were telling me about her. I never gave up and still never gonna give up. She is a very happy little girl and my heart. Hopefully by next month we can get her off of the gtube, and she will also go up to 6 hours off of her vent at a time and that is so amazing!!!!!! Im glad i have found a group like this that i can talk to.

Bonnie - posted on 07/09/2012

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Hi I'm Bonnie. I had twins at 29weeks (1.5lbs + 3lbs). My bigger twin Hailey is healthy and been home since due date. Hannah my smaller one is now 15 months old and still in the hospital. Got her trach 3 months ago(right after her first birthday). She has a GJ tube and some heart problems. Where getting transferred to a smaller hospital for a 3rd try tomorrow! Hopfully home in a month!!
Our full story @" www.b-hannahhailey.blogspot.ca ":)

LIsa - posted on 07/06/2012

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Hi My Name is Lisa. My Little Girl was born at 25 weeks ( 4 months early) She was 1 pound She is about to turn 1 years old in 3 days, and is still in the Hospital as I speak.This is my first baby and it has been a long rough first year, Hoping it will get easier. She received a Trach when she was 4 months old. and also has a G Tube. Her airway was very swollen and narrow, due to My strong little girl always pulling out her tube, and having to be int abated many times. The Trach was going to by pass the swelling, and let her airway heal. She has had already one dilation to open her airway up, and is scheduled to have another one in few months. Since she has had the trach she has been sick with pneumonia 3x, and influenza. I learned having a Trach makes her more easier to get really sick. She is hopefully going to be coming home soon, and I am scared to death. I just want to put her in her own bubble until she gets older. I could you use some advice on what to expect when she comes home. Can we go out in public? Families get together s? How do I know if she is sick? anything to ease my mind. As being my first baby, and coming home for first time. I want to be ready.....

Ambreen - posted on 06/30/2012

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Hello Angela, How is your baby now? My son was born normal but picked up a nasty RSV when he was 5 weeks old. He is back home with trachi after staying in the hospital for more than 5 months. During his stay he had cardiac arrest and had to be put on ecmo for 3 weeks. He also have right diaphragm paralysed. He is doing good compare to what he went through.

I hope to learn a lot from you, so please share your experience with me.
Amber

Heather - posted on 06/13/2012

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Hi. My little girl is Peyton and is now 8 months. She has a trach and g button. At birth she was having trouble breathing and it was due to her vocal cords being under developed. No one knows why, she was full term. Her head size is a little small and seems to have some vision problems. She has a hard time eating on her own and is behind in everything. We have tried twice now to remove the trach but still have it. Like every mom I am full of emotions and sitting on pins and needles. No one knows what has caused any of our struggles. She has a severe reflux problem, which has caused her not to gain a lot of weight. Is there anyone else have these symptoms ? Also, how do you go to every day places? I am so nervous she will get sick.

Any help: email hlope2710@yahoo.com

thanks
Heather

Allyson - posted on 05/20/2012

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Amber, I have a huge problem with visitors too...especially on my husband's side. They are not open about their feelings whereas my family is loud and proud, openly expressing their love or annoyances. Because of this, they get really hurt feelings when they plan family dinners and we don't come. They live on a dairy farm, for crying out loud! Is that a healthy environment for a trach baby?? Um, I don't think so! My husband can't just say that to them, though, because he feels like it would offend their whole way of life and somehow mean they themselves are dirty and dangerous for our son. So, he makes up excuses when they ask. When it comes to our own home, that's a tough one. We moved a couple blocks away from my mom and sisters so that I would have additional help. Because of this, they are over a lot. Even when someone is sniffling, but I don't find out about it until after the fact, it seems. Since we never see his family anymore, when they come over I obviously let them hold him, but I smell things on them and it really stresses me out. My grandma is always covered in a really strong perfume, and I've mentioned it to her before and told her she can't hold him, but she still shows up reeking of it and acts like she has no idea what I am talking about. Even my mom reeks of hairspray sometimes and I tell her so and she gets all offended. In a perfect world, I wouldn't have anyone over unless they smelled generically clean like me and were in perfect, sterile health. I'm learning, though, that that just isn't going to happen. It's so frustrating that everyone reacts so sensitively, though. Don't they get that the well being of our little guy is far more important than anything else? Ugh.



So, to answer your question, my visitor policy isn't something I am able to do much about at this point when it comes to close family and friends. They want to see him, and I just don't know what to do. If one of them showed up smoking or covered in sand, I'd have no problem telling them off, but the slightly smaller issues I just have to deal with from time to time when they call.

Amber_ve - posted on 05/20/2012

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Wow I never knew something like this was out there. What a wonderful site!! My daughter was born 34 weeks and 5 days early and was diagnosed with congenital myotonic dystrophy. She was not breathing when delivered emergency c-section and was intubated and on a vent that was expanding her lungs due to them collapsing. She had the trach put on on March 9, 2012 and also fundaplacation of her stomach and gtube put in. She can swallow, just not suck or chew food, she will swallow baby food. Her name is Kendra and she is so beautiful but due to her condition she has very low muscle tone so she cant sit, stand, or even crawl yet and its really hard to have one healthy child and then to have one with needs. I know that God never gives us anything we cant handle but somedays its really hard. My husbands family acts like Kendra isnt even alive because due to the trach we dont have visitors in our home because Kendra catches EVERYTHING. We just got out of the hospital last week due to pneumonia we where there for a whole week!! Does anyone else have an issue with visitors, I dont allow anyone in here except for grandparents because every one has kids that go to daycare and my family respects it!! Its other family members that basically act like Kendra is not alive and that really really hurts, they dont ask about her unless I bring her name up. Please what is some of your visiting policies. Im Amber, mother

Jocelyn - posted on 05/16/2012

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Hello Allyson, great question.... Does it get any easier? Please answer veteran trach mommys. My son just got trached last week and he should be coming home in about to weeks. I'm happy but at the same time very nervous. I'm dreading my first trach change... I use to faint when i would get a simple shot and now I have to care for my precious son's trach and g-tube yikes! Lord give me strength! BTW Allyson I was excitedhot find this community too just that I don't think it's too active at the moment :( Your son is precious Allyson. My best to you and your little one.

Allyson - posted on 05/15/2012

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Oh my goodness I can't believe how excited I am to read about this community! My son Nolan has Treacher Collins Syndrome which means that he has a small chin, underdeveloped jaw, cleft palate, no ear canals, and he's missing an eyelid and cheekbones. He is 3 months old and has had a trach since 5 days old because he chokes on his tongue because there isn't room for it with such a small chin/jaw. He also has a G-Tube because of his cleft and trach. Does it get any easier? We've been home for 2 months and simply never get any breaks and have had quite a few scares. My husband and I just long for the day when he is more stable, and we have less sticking out of him. He's such a strong little guy and I love him more than anything, but oh my goodness, it's been tough!

Stacy - posted on 05/10/2012

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Hi, My daughter was born at 36 weeks and small. She had a cleft palate, small chin and tongue. They can find no reason, syndrome, or diagnosis as well for her. We have had many genetic tests done. We found out later that she had other problems as well. She had failure to thrive. Went home from the NICU with an ng tube for partial feedings and a special "pigeon" nipple on her bottle. She continued to lose weight but was eating well. She was aspirating her food so got a g-tube. It was just a HUGE blessing for her (as well as us). Now we have a trach - she ended up with pneumonia from an allergic reaction to an antibiotic for an ear infection. Went on a vent - they didn't keep her asleep and she would turn her head from side to side and pull out the vent. After she got better she had damage done to her muscle behind her vocal chords. Couldn't get her off vent for more than an hour so had to trach. We are speaking about a late summer decannulization but still need many more tests to confirm this. She is still having trouble with weight gain but 3 steps forward then 2 back so we do slowly gain ground. Have not had cleft repaired yet due to weight issues. We are moving in the direction of blended formula for her g-tube. Hoping the transition goes well and she doesn't vomit. Have infantile scoliosis as well so she has many things going on with her little body. But I am confident that all in due time she will be totally repaired and on the trach to living a healthy normal life. I do all care for her myself and find it a blessing to have her and to be able to care for her. I also have 4 other kids as well so we are a busy household. Live on a farm so much to do!!

Jocelyn - posted on 04/30/2012

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Wow my baby is going through a very similar situation, only difference is that he is a 26 weeker. I also question a vaccine I got a few weeks before he was born and I'm very interested in hearing about your findings. Have you got a diagnosis yet? Is she swallowing or has more oral control now? Really hope to hear from you soon. My son is only 3 months (full term if I would have still been pregnant) and he most likely will soon get a trach and g-tube, which is honestly a scary thought at the moment. Please email me if you can at jocy552000@yahoo.com Thank you!

Brittany - posted on 12/17/2011

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My son Mathew was born on April 22, 2009 at 24 weeks 1 lb 7 oz 11 in long. He has BPD and pulmonary hypertension. He was intabated until he was 10 months old when he got his trach. In all he spent the first 16 months of his life in the Nicu. He came home on August 24, 2010 with the trach and on a home vent. He is now 2 and a hlf and still has the trach but has come off the vent and almost off the O2 so once he is off the O2 we will have the trach removed.

User - posted on 12/11/2011

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Hi Tonya,
Your story sounds very similar to mine. My baby is 4months old and was born with an under developed chin and normal size tongue. They call this Pierre Robin Sequence or Syndrome. In my case it's sequence since the small chin with the normal tongue was resting on the palate which caused to create the cleft palate. He is also on a feeding tube because of this. and he was trached at 1 month old because his tongue was blocking his airway. He is coming home in 2 days for the first time. He looks great and he lights up the room.

Lucina - posted on 08/10/2011

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Hey guys
I gave birth to my son a week and one day ago and he was diagnosed with lymphangioma of the mandible through sonogram, but apperantly he also has mass of blood vessels in the back of his mouth, throath, and from ear to ear He will be having a tracheostomy and gastrostomy tomorrow because the masses collapse his airway which causes him to not be able to breath without a tube down his mouth. I am really scared to take him home with all of that. Please keep him in you guys prayers. As of right now I am not sure on how long he will have both of them in.

Lucina - posted on 08/10/2011

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Hey guys
I gave birth to my son a week and one day ago and he was diagnosed with lymphangioma of the mandible through sonogram, but apperantly he also has mass of blood vessels in the back of his mouth, throath, and from ear to ear He will be having a tracheostomy and gastrostomy tomorrow because the masses collapse his airway which causes him to not be able to breath without a tube down his mouth. I am really scared to take him home with all of that. Please keep him in you guys prayers. As of right now I am not sure on how long he will have both of them in.

User - posted on 07/09/2011

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buffalo,ny and i'm so happy to have found this site ,it seems some of the moms here have most of the problems i have as well so here is hoping this site will be useful to me as well as i hope to make friends and help others

User - posted on 07/08/2011

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hello, i also have a 10 month old baby boy who has a trach but the nursing home he is in, isnt letting him home unless i have a backup person..such as a friend to help and i have nobody like that so idk what to do.

User - posted on 07/08/2011

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hello, i also have a 10 month old baby boy who has a trach but the nursing home he is in, isnt letting him home unless i have a backup person..such as a friend to help and i have nobody like that so idk what to do.

User - posted on 07/03/2011

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Hello my name is Toshia. I am the mother of a 2yr old that only had to see a dr to get shots then 7 months ago i had Dean, a little boy born diagnosed with Pierre Robin Syndrome & he has a cleft palate. He has glaucoma and extremely near-sighted. His ears are tubed but he still has moderate hearing loss. An MRI has the docs watching for craniosynostosis and he has severe obstructive apnea. He sees a physical therapist twice a week for torticollis also but thats the least of our worries.
Because of the bad apnea we are told he has to get a tracheostomy. I am freaking out! He is such a busy, curious baby excelling regardless of his disabilities. I am looking for advice or maybe a heads up on the direction our lives are going in? Any advice for someone who didn't even know what a trache was before 3 months ago? Thank you soooo much!!

Carmita - posted on 06/26/2011

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Hi everyone... Am glad that there is this page... I have a 5 month old son Grabriel diagnosed with Kniest Dysplasia (dwarf) He is really small, his chest is very small and would have difficult breathing and retract A LOT, he was also diagnosed with tracheomalacia... He has many things going on, due to his condition, he has a cleft palate, profound hearing loss and he has some vision loss... He has a Trachea.. He does eat pretty well (formula) but due to the cleft palate he swallows a lot of air and his belly will get extremely extended, Now he has an NG just for venting (it allows us to pull the air from his tummy) Now he has an schedule appoiment to get an GT (again just for venting)....

Deanne - posted on 06/22/2011

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Hi fellow strong Mom's! I am the proud Mommy to a beautiful baby girl born @ 25 weeks, weighing 1lb and 5 oz and 11 1/2 inches long. Hadley was intubated immediatley after birth and failed numerous attemps at extubation and was finally trached when she was 5 months old. A couple of weeks later she got her g tube. She has BPD, and now has Acquired Subglottic Stenosis but after a 178 day stay in the NICU she came home to us on 8-2-10. She is still on O2 but at a very low rate and we hope to be rid of that soon. She is 16 months old and walking with assistance of a toy and getting into everything. I am so glad to have found this site and to be able to read your stories gives me strength.

Gloria - posted on 04/11/2011

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Hi my name is Gloria and my son is Ryan. He's 11 months old and is trached and has a gtube. He's been trached since he was 3 months old. he was born at 27 weeks and was diaggnosed as having respiratory distress syndrome and later broncho pulmonary dysplasia. He's doin fine but he' s still in the hospital. He's still on the ventiltor but will be able to come off eventually &) . well I look forward to getting to know you and hearing your stories about your lil ones soon.

User - posted on 02/05/2011

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my son was born at 29 weeks he has had a chronic lung disease since he was born has been on bypass for only 48hrs and had to go back to being intubated.. the doctors are talking about doing a trach on Monday and I'm just having a hard time coming to terms with this procedure.i feel like i have no control over my baby and since the doctors only tried bypass once I'm scared that they didn't give him enough chances to try to do it on his own. he olny had on try on bypass i feel like it was a rushed decision by the doctors. i haven't signed the consent to go ahead with the surgery. i'm not sure what to do.

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Maren - posted on 11/07/2010

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Moms,
It's great to see a site dedicated for kids with trachs. My son has a deletion in his 5th chromosome. This deletion is rare and we find no other person with it. My husband and I went through so much when he was first born being told he probably has a condition that was not compatible with life (Trisomy 13, 18). Dr.s sent for the genetic testing for those and when it came back negative they then began "guessing". Only after the genetic array was performed did we find out that he had a rare deletion. At this point Dr.s tell us "We don't know what is going to happen- Owen will write his book BUT do know he has a life limited condition." Dr.'s say that this deletion is the cause of his Pierre Robin sequence (he is trached), neurological condition (non specified), lung issues (defused mild atelectasis) so he is currently on a vent. He also has a g-tube, hypertonia, ligamentous laxity, hyper extensible joints and bi-lateral hip dislocation. Dr.'s have given him a life limiting outcome but I see more potential in him. He has shown improvements that were never thought to happen.
I agree with people who say that the trach is the best thing that has happened. When your child struggles to breath and also can't seem to do anything other then sleep due to them using all their energy on breathing- then the trach has been a life saver. On the other hand I struggle with the trach. The suction machine, the trach ties, the plugs. I have become very proficient in Owen's care with his trach but when issues arise I tell myself to think of the day that he no longer will need the trach. I love the good days and hate the bad! I'm very glad to have Owen with us and know that over time all these feels may lesson as having a child with a trach seems to be like having fingers on a hand. It will really seem like nothing. Look forward to it!

Stephanie - posted on 08/22/2010

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Hi. I'm so glad I found this community because it is hard to find people to talk to about this. My son Daxton was born at 28 weeks because I developed Preeclempsia and he had to be emergency c-sectioned to save both our lives. That was about 3 months ago and it has been an uphill battle ever since. Dax has BPD and has been on a ventilator since he was born. He has failed multiple extubations and they are not sure if it is his airway or chronic lung disease that is causing most of the problem. During his most recent reintubation, it was so hard to get the tube down his swollen trachea that his heart actually stopped. The doctors in the NICU were finaly able to bring him back but it was very scary. That event has pretty much sealed the deal for a trach which has been an idea on the table for about a month or so. We are hoping the trach will improve his airway enough that he may not need long term ventilation. I'm very scared about his upcoming surgery in which they will be doing his trach, GI tube, hernia and circumcision all at once. Up until his most recent episode with the reintubation we thought Dax was stable enough that his life wasn't at such high risk anymore but now we are thinking differently and afraid of how rough this surgery will be on him. We know he has to have it because he is so strong that he tries to pull his tube out every chance he gets and at this point another reintubation would be one of the worst things for him. If anyone has any advice or words of encouragement it would be much appreciated.

User - posted on 08/14/2010

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Hello my name is Lien and i am the mommy of two boys.My first born Kyler is trached,has a g-tube and a fundoplication.I had an all around perfect pregnancy and decided to go all natural and have him in a birthing center who claimed had all the things they would need in an emergency situation.Kyler suffered from shoulder dystocia during laber which meant that his shoulders got stuck and as time went by he started to be deprived of oxygen and when they finally told me that they were calling 911 i pushed so hard i got clots on my face since they didnt have the courtesy to cut me.He finally came out after about 10 minutes now add another 10 to 15 to get to the hospital where he took his FIRST breath becouse at the center they attempted to put oxygen but since he never took a breath and they didnt do cpr it was worthless.Kyler was our first child and me and my husband were very young and unexperienced.Noone thought he would make it considering all he had gone thue and that the brain damage was beyond severe he was put on the cool cap to cool his brain as a prevention for further damega and didnt even open his eyes till about 2 weeks later and even then his movements were minimal.Kyler had all 3 surgeries about 1 1/2 after being in the nicu and were very proud of our boy

Tonya - posted on 08/05/2010

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You are never to late to join, Wafa! Welcome to all the new members! Please feel free to add pictures of your trach babies or to ask any questions you may have. We are all here to help each other!

Wafa - posted on 07/24/2010

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hi, thank you for starting this group, i hope im not to late to post, i have a son Ali who is 5 years old now he was born 29 weeks premature weighing 1 lb 11 oz with chronic lung disease he does also has a g tube. he has been in a rehab facility for almost 3years it had been difficult for me. since hes been home he has improving we are hoping by september he will b decannulated so im praying for that. its a relief to speak to u moms who are going through the same and knowing im not alone. God Bless!

Melissa - posted on 06/28/2010

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Hi! My name is Melissa and I am the mother of a 4 year old boy, a 17 month old girl, a 6 month old girl and another on the way due in dec. Our 6 month old little girl whos name is Charlie got a trache a little over a month ago... She has laryngeal malasia where her larynx is too big and they tried to trim it up but that surgery didn't work so she had to get a trache until her airways get bigger as she grows. Im hoping I can learn a lot from others on this site cause we are very new to all of this...

Heather - posted on 06/16/2010

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wow reading all of these stories makes me feel a lot better because i now know im not alone. My name is Heather and i have a very energetic almost 4 yr old. She came early at 27 weeks weighing 2 pounds 6 ounces. She had acid reflux really bad but the hospital that she was in had no equipment to test for it. The reflux went in her airway and raised heck. She was intubated for 5 months while in the hospital and they couldnt figure out why they could not get her off the ventilation because she was at room air but still needed to tube. They sent her to Rochester hospital and they found the severe reflux and all of the damage it did to her air way. They have her a g-tube first along with pyloroplasty and a nissan fundoplication to see if it would ease the reflux. I did not so about a month after the feeding tube was placed she got her trache. She has since then pulled her feeding tube out herself and no longer needs it and we are in the process of hopefully geting it out :-) i think its been in long enough lol but if you ask her she wants it to stay in i am glad that this is on here because i think it really helps for moms to share experiences with their special babies i wish that this was here 4 years ago when i really needed it. i am completely comfortable with her trache now and have been through almost every situation with it and the only thing that i am scared about now is what might happen after she gets it out lol. if anyone needs any help or advice im always here to help if i dont know the answer i will deff. find it out

Kirsty - posted on 06/13/2010

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Hello, my name is Kirsty, I am a Mum of 2, my youngest bub Tyler is 4 weeks old and had a tracheostomy on the 27th May (13 days). Tyler has bilateral vocal cord paralysis. He was born in Nelson 11 days overdue. When he was born the docs whisked him away as they were conserned about his breathing, the peds thought he had Lyrangomalacia and it wouldn't be a problem, day by day he got worse though and we were transfered to Auckland hospital on his 9th day which is where we found out it was actually the vocal cord paralysis. The trache came as a shock and was quite upsetting but it is amazing how normal it feels now after just 2 weeks! We are still at the hospital, desperatly wanting to take our baby home for the first time (it should happen sometime this week). It will be great to get home but on the other hand, where we are there are at least 4 other trache kids in the ward at the moment, there is nothing unusual about it, it may be weird going back to a small town where I doubt there has ever been a child with a trache!
All going well though Tyler's vocal cords should come right in time and he may be able to get the trache out when hes about 2-3years old!

Johanna - posted on 05/19/2010

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Hello ladies. My name is Johanna and my daughter's name is Amirah. She was born at 27 weeks 5 days. She is 18 weeks old today. She was born at 1lb 4 oz, and now is almost 61/2lbs.

Tomorrow she will be getting a tracheotomy due to severe chronic lung disease. She's been on and off the vent since birth. And although I am nervous about the surgery I trust that her doctors know whats best for her.

Its comforting to read your experiences I truly am thankful to find this site. I really look forward to getting to know you all.

Joanna (Asia) - posted on 04/30/2010

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Isn't it wonderful when something so scary like our babies having a tracheotomy done is turning out to be a really good thing for them? I remember when our daughter was about to have it done I was really concern about this kind of surgery, "cutting into her throat". But the next day...actually right after she woke up from her anesthetic...she showed us with her behaviour that she needed it. She started smiling, kicking with her legs in the air as if she was running, which she didn't do before the trach because she was struggling for breath. Our girl didn't have to fight for her breath anymore. I was so relieved when I saw her like this, because I was really wondering if it's a good thing and necessery. It was. And that was the only way she would be allowed to come home with us.
and today she is approaching her second birthday (in June) and she is an extremely happy toddler.:)

Brittany - posted on 04/29/2010

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Hi, My name is Brittany. My son Mathew was born at 24 weeks. He has BPD and Pulmonary Hypertention and many other issues. He got his Trach back in Jan. He will be getting a G tube very soon. He just turned 1 year old on April 22, 2010. He has spent his entire life in the NICU, on a vent for 10 months. He is doing very well now. I think the trach was the best thing for him. He may be coming home very soon. He is eating baby food now and starting to do all the things he should be doing.

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