Micro Preemie, Trach, G tube, BPD, Pulmonary Hypertention, On Ventilator in ICU, 9 months old

Brittany - posted on 02/10/2010 ( 6 moms have responded )

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My son is 9 months old he has so many issues (Trach Gtube BPD PH on Vent) and he is still in the NICU. I was wondering is anyone going through this or went through this.And can give advise.

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Linda - posted on 05/28/2011

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Hi There! YES I do know what you are going through. My son is not 9 and was in the NICU for severe BPD, trached g-tube. He's free of all tubes now. You can read his info on my website www.nicumama.com. Contact me if you have any question at all! Will keep you in my prayers.
Linda

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Tami - posted on 06/07/2011

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I have a 22 week Micro Preemie. She was in the NICU 16 weeks and 1 day, but who counted. One of the BIGGEST helps to me was a website all about Preemies. http://www.preemie-l.org/ Its list owner/administrator is based out of Australia but had a preemie and it was an awesome forum for questions and answers. I can tell you it was MY saving grace but I must confess that was 14 years ago. God speed my friend, it's a tough road but one we wouldn't trade for the life of our child.

Aleshia - posted on 06/05/2011

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Hello, I can definitely relate. My son was born at 24 weeks and 2 days, and has BPD, PH, and was on the vent until I asked them to trach him. He got a trach, gtube and fundo all at the same time and I was a wreck because I didn't know what to expect. He was born on April 28, 2010 and was released from the hospital on April 29, 2011. I am not sure what kind of person you are, but get use to watching your baby not all of the monitors. monitor watching was the worse thing that anyone can do. If you haven't already, turn the monitors around and watch your babies facial expressions, and color. If your baby is rosy, then his sats just fine. If you haven't already, learn how to give him his meds yourself, learn how to suction him yourself. Hold him as much as possible so that you get used to moving him around with the trach. Have them show you how to change the mickey button, Uzziah pulls his out fully inflated from time to time. You will do fine. Ask tons of questions, even if they seem like dumb questions to you, ask anyway. I have been home for 1 month and have been doing everything myself, because we do not have a nurse yet. I can do all of this stuff in my sleep and you can too. Hope all goes well

MOmMy LoVe U - posted on 05/30/2011

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I can't reAlly relate cause my son is just 1 month and 1 week old. He was born 15 weeks early he is in the NICU the Dr. Said he won't be able to come until he is 4-5 months maybe longer he is on tubes and the cpap to help him breath. But he's just taking a day at a time going day by day. I miss him so much I only got to carry him 2 times from the time he was born n he was almost a month old when I got the chance to hold him. But my son is on tubes and breathing machines. But just hang in there.

Nancy - posted on 02/10/2010

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Hey Brittany
So for starters where are you from? Just curious, my daughter is 3 and she was born with Bilateral Vocal Cord paralyisis. She has a translocation of the # 7 chromosome.um we spent thee months in the Edmonton NICU at the Stollery Hospital, it was hard I won't say it was easy, we were very nieve we thought we would be home in a week. Well try 12 weeks and it was overwhelming for us trust me we have three other kids at home two of which have special needs also another translocation of the #7 chormosome and Aspergers and ADHD actually we have two with the ADHD. So a lot of praying not sure if you are home yet but stay in hospital until they can get you homecare set up we did my daughters care for the first four months all on our own not fun to live on four hours sleep. But it gets easier with time make sure you get time to yourself because once you are let out it is a 24 hour job, I have to laugh at parents that can just drop everything and go out. We have to have someone specially trained to take care of our kids and it isn't easy on the relationship if your married because you always have someone doesn't matter who it is in your house. And yeah like Sarah said the Gtube is awesome you don't have to spend the time burping your son like a normal baby but there are days when you wish that they were normal. What training have you had? We had to be trained with CPR and how to change the Trach tube and feeding tube we didn't learn that till later but we had to have the CPR and trach tube changed before we could take my daughter anywhere even in the hospital. If you have your son on the kangaroo pump it is good for awhile till they won't sit still anymore then you go to boluse feeds. but you do alot of praying and hopefully you will get out of hospital soon unless you are already out. My daughter is suppose to be getting her trach out later in the year but then we also have to do heart surgery. She has a stenosis of the left ventrical. It is not easy when your sitting in the NICU and parents get to take their kids home or something we were five hours away from home so it wasn't easy, but it gets easier and it is hard when if you haven't held your child I remember all i did was cry because i wanted so much just to take my daughter home. but listen to the docs as much as you will probably hate to and take care of yourself because once you get your son home your days won't be your own. Hopefully you have some wonderful doctors in your community where ever you live because it is hard when your child gets sick and you don't have doctors that don't understand your child. You are the best advicate for them but when the docs get a child with a trach and or other conditions if it isn't a trained pedetrician or something then you are pretty much whooped we have alot of doctors who won't even take a look at my daughter we know she is sick but because she has a trach they don't usually know how to handle the situation. Hope this helps I haven't met too many moms that have kids with trachs um there are alot out there but hopefully for you it is only for a little while. We have another little girl in Grande Prairie Alberta that is where we are from that has a trach also.

Sarah - posted on 02/10/2010

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Hello Brittany,

Well I can relate in some ways, my daughter was not a preemie, but she was born with multiple health issues. She had pulmonary hypertension, she has been on the vent 5 times, she still has a gtube and we spent months in the NICU and PICU other the last year. First Cheyenne is 11 months old, born with Down Syndrome and all the above issues... now let me tell you the gtube is actually going to be such a benefit for you until your child learns to eat by mouth.. medicine and nutrition are the main components that will heal him and those can go through the tube. As far as the BPD I think once his lungs mature a little that should be fine, most children advance well from that from what I have witnessed. Cheyenne still deals with Pulmonary Hypertension, but she was born with a heart defect, I am not sure if that is the case with your son. Cheyenne takes meds daily for her heart issues, (9 meds three times a day) and until this month did not take them orally... it was the tube(mickey) that saved us! At first it seemed so mechanical to feed her... almost unnatural, but as time went on... I adapted and as I look back.. I am so thankful for the doctors that suggested we do that procedure. Now at 11 months she is at the point where we are comfortable enough to have it removed. I pray your son does better soon, I know long term hospital visits are agony... on the whole family.. but great is our reward.. right... when he smiles I am sure you could walk across the world if it would make him smile again. You have the strength and I wish you well.

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