My miracle baby premature at 23 weeks and 3 days

Darlene - posted on 03/01/2009 ( 18 moms have responded )

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My son, Marc, was born premature at only 23 weeks and 3 days. He is now 15 months old. He has developmental delays and hydrocephalus and a few other things going on, but for the most part he is doing great. He is doing MANY things they told me he would not be able to do. For one, midline.....putting his hands together and holding them. he does that in which I am very proud of him for. He is the joy of my life and the apple of my eye. We have been down pretty much every road and over many bumps so if anyone would like to chat or if you know of anyone who has another child born this prematurely or your child has hydrocephalus and would just like to talk I am here. I would love to be able to talk to other parent's who are experiencing the same thing I am. It makes life a whole lot easier when you have someone else to talk to.

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Lindsey - posted on 03/10/2009

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My daughter was born at 23 weeks and 2 days.  She has been through alot in her little life.  She is now six years old.  She has had multiple surgeries and alot of physical,occupational, and speech therapy.  She has come a long way but she is doing great.  It is always nice to be able to talk to others that have had a preemie at such a early gestation.

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Hi, my son was born at 25 wks and is doing very well.  he spent 114 days in NICU.  It was a rough stay - we almost lost him to NEC - but since coming home he's been amazing.  He's now 13 months (10 corrected) and trying to crawl and stand.  If there's one thing I've learned inthis past year, it's that our little preemies will suprise us all, any chance they get. 

Courtney - posted on 03/02/2009

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Hello! I had twin girls at 25 weeks. One was 1 lb and the other was 1lb 5 oz. They have had many problems in the beginning and were in the NICU for 3 months. When they came home, they were on oxygen and had apnea monitors. It was very rough for the first couple of years. They had so many health problems. They are 4 now and doing better. They still have speech and hearing problems. They weren't expected to live when they were born but they are still here and doing better than any doctor has expected!

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Caroline - posted on 07/04/2012

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My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, stayed in hospital 4 weeks, 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. Now she is taller than me.
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Dulce - posted on 10/18/2011

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I'm on this boat right now... My daughter was born at 25 weeks and 4 days of gestation. She is still in the hospital, going on 6 months now. She just got a shunt put in this past Thursday for the hydrocephalus (grade 4). She has a hole in her heart and bad lung disease. Drs are waiting a few weeks to do a cath procedure to see how her heart is doing and whether she will need heart surgery soon or if it can wait. From my understanding, we are looking at atleast a few more months in the hospital =/

Christina - posted on 04/24/2011

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MY SON WAS BORN AT 23 WEEKS PLUS 5 DAYS HE IS NOW ONE YEARS OLD. HE IS MY LIFE HE IS 13 MONTHS NOW AND HE BABBLES ALOT HE DADA AND GOOOGOOO AND SMILES ALL THE TIME. HE WAS IN THE NICU FOR 5 MONTHS. HE HAD A LOT OF FEEDING ISSUES AND RIGHT NOW HE GETS A LOT PT, OT ST,. I AM TRULY BLESSED AND HEARING ALL YOUR STORY HELPS ME. THEY ARE ALL ANGELS.

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Quoting Jennifer:



hi, i had twin boys born at 26 weeks 6 days. they are now 9 1/2 months old. they have had a rough winter with so many colds, atleast no rsv, but then they get synagis shots every month. my boys seem to be doing exteremly well for being premiees they still arnt' doing things they should be for this age but i think that's to be expected. wish they made a book for developments at for specific ages and not a full term babies.






My twins were born at 32 weeks, not nearly as early as yours.  I always read the "What to do" books, but I would always look back too, just to see where they would be if they were full term.  That always helped me.  Like if they were five months old I would think they should really be 3 months old ect. 

Lindsey - posted on 03/11/2009

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My daughter was very lucky in that she has one brain bleed that was a stage two but it went away.   She does not have any neurological issues.  It is amazing how much she has come since she was aborn.  I never try to forget the battle she has gone through.  She works hard everyday to do the best she can do.

Darlene - posted on 03/11/2009

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Quoting Lindsey:



My daughter was born at 23 weeks and 2 days.  She has been through alot in her little life.  She is now six years old.  She has had multiple surgeries and alot of physical,occupational, and speech therapy.  She has come a long way but she is doing great.  It is always nice to be able to talk to others that have had a preemie at such a early gestation.



 



yes it is very nice to speak to other mother's who go through the same thing as you. Mom's who carry full term do not know what it's like to sit in the NICU for months and months not knowing if your child will live or die. It's a scary situation. Having the multiple surgeries on top of that as well. Can I ask you, does your daughter have any neurological issues? My son has hydrocephalus and is shunted. He aquired the brain bleeds very early on, like 2 days after he was born with them progressing to stage 4 bi-lateral. I am so lucky I found a neurosurgeon in Philadelphia, (not CHOP), who is by far The BEST doctor that my son sees. Truly an amazing person. Very compassionate about my son's cares.





 

Darlene - posted on 03/11/2009

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Quoting Rebecca:



hello there I just wanted to say congrats and I also have a baby well now big boy but he was 23 weeks and 4 days, 1lb 7oz. They also told me he wouldn't do anything and that his quality of life would be poor. He is almost 2 and  we have had eyes surgery and hernia surgery but other than that normal preemie stuff. Developmentally they will get it he takes longer to do things but it happens. I also have a 3 yr old who was a 25 weeker 1lb 10oz . They are both special and the doctors said very poor things about there life to come but positivity works wonders :)



 



Hello! Is it amazing how doctor's can be sometimes? Positivity is the main key and whenever Marc does something they told me he would never be able to do I just sit there and go YES! We can do it.





 

Rebecca - posted on 03/06/2009

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hello there I just wanted to say congrats and I also have a baby well now big boy but he was 23 weeks and 4 days, 1lb 7oz. They also told me he wouldn't do anything and that his quality of life would be poor. He is almost 2 and  we have had eyes surgery and hernia surgery but other than that normal preemie stuff. Developmentally they will get it he takes longer to do things but it happens. I also have a 3 yr old who was a 25 weeker 1lb 10oz . They are both special and the doctors said very poor things about there life to come but positivity works wonders :)

Suzanne - posted on 03/04/2009

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My son was born at 24 weeks. I was told that he wouldn't live through the night. He is now 10 years old. He has mild cerebral palsy that the average person can't notice and has pretty severe ADHD. He has ROP and will wear glasses forever. He had several eye surgeries. He has light perception only in one eye. I almost freaked out, though, when his ophthalmologist talked about prepping him to drive! It's a long road, but it the drive is fast.

Jennifer - posted on 03/02/2009

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hi, i had twin boys born at 26 weeks 6 days. they are now 9 1/2 months old. they have had a rough winter with so many colds, atleast no rsv, but then they get synagis shots every month. my boys seem to be doing exteremly well for being premiees they still arnt' doing things they should be for this age but i think that's to be expected. wish they made a book for developments at for specific ages and not a full term babies.

Darlene - posted on 03/02/2009

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Thank you very much. Yes, I agree that at times it was touch and go when he was first born. 2 days after he was born the neonatologists actually told me if I was in anyway religious to call in my priest to have him baptised because they really didn't think he was going to make it through the night. THAT WAS TOUGH.....I am a single mom, so hearing those words come out of their mouths was more than I could deal with. I never prayed so hard for anything in my life. I had always wanted a child and I couldn't understand why this was happening to me. He got through it though and I thank God for him every single day of my life because he is my ray of sunshine. :)

Darlene - posted on 03/02/2009

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hello. My son was in the NICU for 5 months. So many issues. He had the ROP as well, but his was so advanced that he had to have the laser eye surgery. At this point, they said he was definetely nearsighted, they want to give him glasses but in 6 months. He also had mild to moderate hearing loss. They are telling me now that there is a possibility that he may never walk, but you know something up to this point he has shocked everyone including all of his doctor's and his neurosurgeon so like I tell all of them we just take it one day at a time. :)

Kirsty - posted on 03/01/2009

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My sister had a baby at 23 weeks and 6 days who is now 4 and starts school this year, he is doing really well although suffers from Chronic Lung disease and is profoundly deaf in one ear and wears a hearing aid in the other ear - he is a joy to be around although i know that times were really tough for my sister and her partner when he was first born and many times they did not know if he would make it or not. Your son is also a true miracle baby and looks gorgeous.

Sarah - posted on 03/01/2009

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Hi there! My daughter was also a micro preemie born at 25 weeks. She's now 16 months, almost 13 months corrected and is doing very well except she's on a waiting list for a speech therapist because she doesn't say anything except mama. She also had some eye problems. She had stage 2 ROP but luckily it corrected itself and didn't need the surgery but she now has a wandering eye and wears a patch so she doesn't lose her vision in it...It's nice to talk to moms who have been through the same things as you. Full term moms never seem to understand...How long did your son stay in the NICU?..My daughter was there for 90 days.

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