Mom of a preemie baby boy born at 26 weeks

Caroline - posted on 07/04/2012

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. She began to thrive. I was elated!

I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. It’s now over 14 yrs later and she continues to take these special nutrients, she has attended normal public schools, she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway.
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Beth - posted on 10/24/2011

i hope everything is going well with ur son my son was born at 26 weeks also he was 2lbs 1oz now he is ten months and doing great he had surery the day he was born to put a valve in his belly for gas release he didnt have a venterlater until 2 weeks old then was only on for 2 weeks . he was in the hospital for 3months because he had sleep apnea but he is doing well with that alkso now he didnt have any monitors when he came home or anything. but what my question for u is when do i interduce milk to him do i do it at 12 months old or 12months his adjusted age im so confused with this adjusted age thing with foods and stuff klike that i dont wanna hurt him by interducing it to earily. i havent ever met anyone who has had a baby this earily befor and i cant really even find anyone on the computer eather to talk to

Brady - posted on 03/01/2010

mt daughter was born at 26 weeks as well. she too came home on a moniter and o2. i was just wondering how long your little one was on o2 at home thank you

Brady - posted on 03/01/2010

hi my daughter was born at 26 weeks and 6 days and doing well. she too came home on o2 and i was just wondering if your daughter is still on it. i m just trying to find out how long she will be on o2 thank you

Linda - posted on 02/06/2010

I hope you and your son are doing good. My 16 yr old was born 12 weeks to early. At 2 lb 10 oz. he was in the hosp for 6 weeks. I was lucky he had very few health prob. but was on heart moniter for 6 months. he had sleep apnea. he is now a freshman in high school. I was a single mom at the time but family and lots of prayer got us throught.

Elizabeth - posted on 02/04/2010

Tiffany:
Please consider signing up for Preemies Today - www.preemiestoday.org - it is very helpful to ease life with a preemie and provide relatable stories & great info. You can't look years down the road right now. It is too much - to wonder how he will develop. You just have to take it a day and a week at a time...it is all you can process.
Our 4th son was born at 25 wks (started preg w/ triplets, but lost two early on). No known reason for his early delivery...didn't have preeclamsia, though older boys were born early. I only had time for one shot, as he was born the same day the labor started. He weighed 1.13 at birth, spent four+ months in the NICU. He was on the vent for the first month, had a grade 1 bleed, intestines perforated, took a long time to get off cpap, had trouble feeding & growing and came home on oxygen & monitors. Within 2 months, we had him evaluated by the county to get in to the infant toddler intervention program. We get physical therapy weekly through insurance, speech bi-weekly and are now starting occupational therapy. He cannot drink thin liquids and has been recently diagnosed wih EE, a difficult esophageal disease requiring an extensive elimination diet, steroids and immunotherapy shots.
All that said - despite the difficulties - I wouldn't trade a day. Not one. We just celebrate smaller milestones. He just said the word "yes" last week for the first time past the age of 2 - a friend was here when I asked him (rhetorically) if he wanted more of something (we are partially signing to encourage communication and language development) and he said "yes" - I burst into tears.
These moments will come for you. In between, pray and then get some girlfriend time, a hobby, a passion - something to recoup and refresh. There is much to focus on with your son that you can get to overwhelm. Be gentle on yourself - your son needs you!
Blessings,
Elizabeth

Jennie - posted on 02/01/2010

My son born at 26 weeks weighed only 1lb 12oz and had a grade 3 brain bleed came home with oxygen tank and apnea monitor. He is now 5 and you would never know it now he is perfect.

Carrie - posted on 01/29/2010

I have twins born at 30 weeks. One also had Grade IV IVH with resulting hydrocephalus. We were given an absolutely grim prognosis. He is now 5 and doing much better that we could have ever of hoped. Don't get me wrong he is not "typical" by any means but through a lot hard work and great therapist he has made great strides. He started walking at about 2 with the add of a K-walker and nownjust has an AFO on the right foot, even climbing stairs fairly successfully. Talks up a storm; loves to sing. Attends our local church nursery school. He did end up with optic atrophy from the hydrocephalus so he has some vision issues.



One thing that we were told by a doctor that helped us stay positive was "We know very little about the human brain and even less about the baby brain. So no one can say that it is a lost cause." Nate's brain has found a way to rewire itself. It is a rough and scary road that your are traveling. Try not to look too far ahead the worry of the future will drive you mad. Try the best you can to live for the day and the future will take care of itself. If you have an specific questions please don't hesitate to ask.

Jennifer - posted on 01/28/2010

Hi Tiffany ~ My daughter was born in July 2009 16weeks early weighing 1lb 10ounces. The NICU team monitored her for a brain bleed, but she did not have one, but she did have trouble breathing and was placed on a vent. She is now home on O2 and a monitor and over 9lb. I can tell you that while the journey is a tough and long one, it is worth it to see your miracle baby smile or just squeeze your finger.
I truely believe that God is working through these preemies to give us strength, hope and love. Their milestones are just a little different then a full term babies and that makes them all the more special.

I will keep you and your son in my thoughts (all good ones!)

Barbara - posted on 01/27/2010

Hey!!! my son also was born @ 26 wks. it was the scariest thing that ever happened, besides when he almost came out at 18 wks. i thank you for sharing your story, because it is comforting knowing that you weren't the only one out there with the same issues. He is truly our miracle baby!!! when he was born, they took him off the ventilator later in the evening, and was placed on cpap and nasal canula. He surprisingly did well the 2 and a half months he was in the nicu. The only problem that he had was a heart condition. we learned about that a week after his birth. it was very crazy. but they transferred him to children's hospital as soon as they found out. the cardiologists took great care of him. he was able to come home with us before having surgery at 36wks gestation and 5 lbs 11oz. it was really heart wrenching though, b/c there were all these signs we had to look for, to see if his heart was okay. he had his surgery in may. and has been doing so well. just keep praying and stay in high spirits. i know its hard, but they are our children. and this only makes them even more special!!!

Heather - posted on 01/25/2010

hi, my son was born at 27 weeks. He also suffered a grade 4 bleed, caused from a staph infection. His was on the left. He is now 4 years old. He has mild CP his right side. Other than that he is a typical preschooler. He receives OT and PT once a week each. That has been the key, as he started his therapies as soon as he came home and believe he wouldnt have come this far without it.Especially since they pretty much said he may not walk. talk etc. when he left the hospital. I really didnt tell anyone at first because I didnt want anyone to put him in a box so to speak until I could gauge his progress.Now, his speech is fine and cognitively he tests for his age. It took him a few years to catch up though so dont worry,( Ex. he didnt walk until his 2nd birthday and didnt potty train until 31/2. He is a picky eater because he has texture issues. He used to wear an AFO on his right leg only because his ankle cord was tight.) Anyway, I hope all is going well and if you need any advice PLEASE do not hesitate to email me. Hang in there! Heather

Alicia - posted on 01/25/2010

my boy was 8 weeks prem, he went through so much, i had ovarian cysts one twisted so had to have operation when i was 20 weeks pregnant then had pre-eclampsia which is why he was early, and the only thing that kept me positive was the thought of my baby, you just gotta keep your head high and keep positive let everyone else worry, your little boy needs you and will look to you and your smile. hope that helps

Jennifer - posted on 01/24/2010

My son was a 28 weeker.. he weigh 2 lbs 11 oz. He also suffer from IVH Grade 2 on the right side of the brain . So far the bleed has dissolve and he does suffer from alittle stiffness in his legs and will be starting early intervention program.

Emilie - posted on 01/23/2010

My son is 4 1/2 now. He was born at 26 weeks in May 2005. He had a grade 3 IVH. He needed PDA ligation surgery at 3 1/2 weeks old and finally came off of the vent a week later. He also had craniosynostosis (soft spot closing early). He had laser surgery for ROP. He came home on oxygen and caffeine.

He is now going to preschool, learning his numbers and letters (he already knows colors and shapes) and generally busy being a 4 year old. It was a long journey with lots of doctor and therapy visits, but it was all worth it. Keep up the good work, it gets easier!

Brady - posted on 01/22/2010

my daughter was born at 27 week on nov 5th. She also had a brain bleed but it was a stage 3 as well as stage 2 retinopapthy in her eyes. We brought her home yesterday on o2 and a moniter. I saw your story and just wanted to say that it takes alot to be a parent of a preterm baby. I have only been doing it for 2and a half months and its hard you have been doing it for awhile so keep up a possitve attitude and just love your son and things will work out. This is how i have been dealing with my daughter and just know no mater what your son will always love you and thats the best reward you can have.

Lana - posted on 01/16/2010

9 years ago my daughter was born at 28weeks gestation weighing 2lbs11ozs and 14in long. She too had oxygen deprivation and developed a grade 4 and 5 bleed in the right frontal lobes.Was on a respirator and numerous chest tubes. She had an external shunt placed at 8 days old to draw off the excess cerebral fluids manually. She was finally released to Riley's Childrens Hospital in Indianapolis, IN, at 48 days old, to have a permanent shunt placed. Since then she has had to have it revised once.She will be 10 years old in June, is in the 3rd grade with extra help in resource for math, spelling and reading. Uses arm crutches to walk. Has Cerebral palsy of both legs.She has caught up and passed her peers in size. Is one of the happiest and inspirational children you could ever meet. She has had extensive therapies and multiple surgeries on her legs. She continues to have therapy 1 time a week. And people in the stores have been known to stop and ask her how she is doing( they met her at therapy), and tell me what an inspiration she was to them to keep going. I truly believe that the power of prayer has kept her with us. We have had a few scares along the way...we call her our miracle child...and thank God for her daily. She has been a blessing to our lives and we wouldn't change her for all the gold in the world.
Please feel free to message me anytime!

Heather - posted on 01/15/2010

My daughter was born at 29 weeks. She had a grade 3 IVH on the right side of her brain and developed Hydrocephalus. She had the VP shunt placement and is now 10 months old and has never had a malfunction or any problems. It is very scary but the shunts are VERY sturdy.

Heather - posted on 01/14/2010

Congrats on having a baby, and I'm sorry about his problems. My second son was born 14 weeks early too and he also suffered from an intraventricular hemmorage. While his was only a grade two it can still be very scary. I'm happy to say that it resolved itself and he is fine now and I can only hope for the same thing with your son. Good luck

Denise - posted on 12/29/2009

My daughter was also born 14 weeks early, she suffered from oxygen loss to his brain resulting in a grade 4 intraventricular hemorrhage into the right side of her brain too, she had seizures,plus her eye site is 20/100 and I was told she has CP . I cried everyday I saw her in the hospital for 3 months. Everything seemed to going wrong with her and the medical bills keep coming,but I tell you the truth God is good. Her grade 4 intraventricular hemorrhage into the right side of her brain dried up into a little dot. She has no more seizures. Man!, I'm happy to say she is a16yrs old teenager with attitude...lol She does everything a teen age girl do. To look at her you would not believe she was born at 1.6 oz Even though we have our little and I mean little struggles with her disabilities I would not trade her for the world. So I tell you keep faith in God even when things look dark, He will bring your baby boy out. My baby girl is a true testimony that preemie baby can grow up to alright when born with medical issues. He will grow up to be a fine young man. Just believe he can.

Felicia - posted on 12/28/2009

i'm sorry u have to go though that i to had a preemie he was 24 weeks and had brin bleeds but came came out of it fine, i am sure your little boy will be fine i do not know if you prey but it helped me and i know it will help you to.

Carisa - posted on 12/25/2009

Tiffany I hope little Joey enjoyed Christmas as much as Cayden and Dyaln. We still need to do a playdate

Julie - posted on 12/22/2009

My son was born March 2008 at 26 weeks, 5 days. Initially, he had grade 2 on both sides, then right side progressed to a 4 and left to a 3. Aside from being small for his age (21.2 pounds at 19 months) and being speech delayed (but using baby signs), he is doing phenomenally well. The brains on these little guys are amazingly "plastic" and can really compensate for a lot of damage. I know there is the potential for issues is still high, but I am still amazed by him all the time.

My guy did not get hydrocephalus, so I have no experience.

Remember, the brain is an amazing organ that can really make up for a lot of damage. Your son is, I'm sure, amazing. He may be different from other kids, but he is still amazing.

Liz - posted on 12/22/2009

I hope your son is doing better now. My twins were born six weeks early in June 2008, my son was born with underdeveloped lungs, and had to be given steriod shots and was on a resperator. Once he was off of that he was on oxygen for a while, and as for my daughter besides the jaundice they both had, she had weight gain issues.



Although it is a struggle, and impossibly hard to see your child struggle for life, when you do finally get to hold him, and be able to bring him home, it makes you appreciate everything about your child (ren), and their accomplishments. At birth my son weighed four pounds 10 ounces , and he was eighteen inches long. my daughter was three pounds 12 ounces and seventeen inches long.



Now at 18 months old ( 16 and a half months corrected), my son weighs 26 pounds and is 34 inches. My daughter weighs almost 25 pounds and is 31 and a half inches.