Support needed!!! I am a mom of a 24 weeker whom is still in the NICU

Lydia - posted on 08/03/2010 ( 19 moms have responded )

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My daughter Jolie was born on april 25th, 2010, for no reason my water broke early and i wasnt able to stop labor, i could only stop it for 3 days, she was born at 24 weeks, her weight was 1.6 pound and 13 inches. Today she weights 4 pounds and is 15 and a half inches long she is doing better, she looks much more healthier, she is still on the ventilator because both of her lungs collapsed in less than a week after she was born. She has had minor eating disorders but its been a few days now that she tolerates milk better she takes 12cc every 3 hrs. She has anemia also, IVH Type 4, but it has stopped bleedinf and her head isint growing, i try to cope everyday by reading up on preemies and their stories, of course reading the bible and asking God for her recuperation. This is really desperating, some encorgement would be really nice and in good use as well some prayers for Jolie.

Than you!!

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Nancy-Suzie - posted on 08/13/2010

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Sadly there are no miracle solution. You'll find strengh in prayers and in looking at your little one. My son was born on July 4th 2010, Major PDA issues, Bas spells, and a NEC scare, 3 medical error from 2 different hospital... I saw him this past Wednesday turning blue as he had a terrible spell.. my heart sank, my soul cried but I need to be strong and present for him to get better. All I can say is that all of us mom of preemie are with you and behind you with all that is going on. As unless you have walked a mile in our shoes, you can't know how it feels to leave your baby behind after c-section or vaginal birth, leaving them in plastic boxes, with wires, monitors and staff, sleeping at home alone without a baby. Having to pump breast milk every couple of hours for a child you don't get to hold or touch.

The army of the preemie mom is behind you, helping you and praying for you. Even if my little boy needs prayers too, I will pray for you and I usually include the moms of preemie in my prayers ans we all need a bit of help.

Zamaris - posted on 08/12/2010

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My daughter was also born at 24 week it was soo unexpected, my water broke the exact same day as I turned 6 months. I know first hand what you are experiencing just know that with a little of hope everything is possible and don't give up on her she need you more than anyone. A good tip Jaylyns nurse told me was to touch and hold her as much as you can and I have to say it does work. God bless you an Jolie

[deleted account]

My son was born at 25 weeks and spent 3.5 months in the NICU. He had a lot of breathing problems and was on a vent for 2.5 months. We weren't allowed to bring him home until he stopped having de-stat spells. Now he's 2.5 yrs and has no problems (he needs a puffer when he gets sick but that's no biggie).

Keep strong and keep praying. Our little preemies have a way of surprising us all.

Liz - posted on 08/11/2010

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My daughter was born in January at 28 weeks, weighing 1 lb 15 oz. Both of her lungs collapsed on her second day of life. She was ventilated for two weeks and also suffered numerous additional problems, such as eating issues, massive inflammation of her bowel and non-surgical treatment to close two holes in her heart.

She was in the NICU for 3 months and finally came home on a heart and lung monitor one week before her due date. We got shot of the monitor after a further 7 weeks and she is now a healthy and happy little girl.

Her developmental milestones are in line with her corrected age and she is receiving some minor occupational therapy, but overall she is making astonishing progress.

Hang in there. Stay strong and keep praying for her. God is miraculous and His love really can and does make the difference. I will pray for you and your family too.

Becky - posted on 08/10/2010

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I have not experienced what you are going through with a 24-weeker. My son was born at 32 weeks, which has given me a huge heart of compassion for preemies and their families. Because of our short 23 days in NICU, our eyes were opened to the challenges and struggles these babies & families are facing.
I just want to pray for you and encourage you to keep reading God's Word and looking to Him!
I have found the Book of Psalms to be often very encouraging as the author expresses the burdens of his heart and cries out to God for wisdom or strength to make it through each day.
I will be praying for you and for little Jolie!

Andrea - posted on 08/09/2010

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i also had a baby at 24 weeks he weighed 1lb and 10ozs. he also had a grade 4 brain bleed and one of his lungs collapsed. he had several surgies on his head. he stayed in the nicu for 4 months before he was well enough to come home. he had to come on oxygen for extra help. i dont want to scare you but my little boy had surgery in january. he came home and the next day he was back in the hospital with severe damage to his brain stem. the pressure from the fluid built up and caused it. a week later we had to take him off of life support. he was 7 months old. i pray that your little girl pulls through and gets to make it home soon. i understand the long road you are going through. if you want to know more about my little boy i would be happy to anwser any of your questions.

Simone - posted on 08/08/2010

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Hi Jolie,first I must say that your little miracle is already living proof that premies are strong individuals. She has already beaten the odds and will be ready to come home soon. These little people always have to give us a little scare and keep us on our feet, but we have to learn to keep faith in God and continue to pray, he is answering daily. We have a lot in common. My baby was born at 25 weeks,no inducing or anything just went rite into labor. He was 1lb 10oz 12in long. You and your baby have given me encouragement and I do believe your baby will be home very soon. I am praying none stop for both of our little ones. Just watch and see him work for you all. Rest assured God will take care of you both.

Colleen - posted on 08/08/2010

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Well I was in the same boat you are in. Daughter born 12/07/08 @ 1lb 8oz, she then dropped to 1lb 6oz! She had level 1 and 2 brain bleeds. Same thing with ventalators, tubes, wires, the whole 9, such a scary situation. She was in the NICU for 103 days, and I thought she was never getting out. As one mom mentioned, the technology is amazing, as my daughter is amazing today, no sign of prematurity or any mental disorders. The thing that kept her in there the longest, after she started breathing on her own, was feeding. She could not feed enough from a bottle for them to feel comfortable enough sending her home. And sure enough, right at the time when she was supposed to be born (march 24 was the due date), she started feeding from a bottle great. Like the nurses said, it would be a light that would just click on in the babies head, and it did. I brought her home at almost 8lbs, just like a newborn.

So God does look out! Luck, faith, and great doctors and technology are there too! You will get through this. The best part about the hospitalization (i felt) was all the knowledge I got to obtain from the doctors and nurses and how to take care of this newborn. Not all mommies get so much help and experience before bringing the baby home. So take them up on any questions you may have. Get them to enroll you in the programs that follow your baby at home to help in her development. We still have a developmental specialist every week come over and "play" with her. We are truly blessed as I know you will be too!

Susan - posted on 08/08/2010

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Oh the joy and pain a preemies family goes through. I was blessed with a son, born at 30 weeks, at 2lbs. 13.5 oz., 14 1/4 inches long. I was blessed because he tried to arrive at 22 weeks. He spent two months in the NICU, had IVH3 and a second at a 4.He came home at 5 lbs. 5 oz. and is now a happy healthy 13 yr.old who is 4'10, 77 lbs. These babies are fighters. They give there all to get strong and healthy so that they can go home. One suggestion I would make is if by chance someone suggests therapy when your little one is older, go for it. I firmly believe that my son, who dr.s said wouldn't walk until three or four, if at all, hadn't had therapy he wouldn't be where he is today. He started walking at 17 months when I was in the hospital having my third son., a 34 week preemie. You and your family are in my thoughts and prayers. It will be a long and sometimes painful road but remember that nothing good comes easy. God Bless both of you.

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My daughter was born at 24 weeks, 3 days, and weighed 1 lb 11 oz,13.5 inches long. Her lung collapsed at 10 days and she had 3 chest tubes inserted. We had her on Do Not Resuscitate orders for 3 weeks after that. 82 days in the NICU, 5 weeks on a vent, 1 week on CPAP and then on O2 until she was 5 1/2 months old. No brain bleeds, ROP stage 3 plus, extremely developmentally delayed until about age 3. She came home at 4 lbs 5 ounces and 17.5 inches, on O2 and an apnea monitor..
She is now 15 years old. She has learning disabilities, sensory processing disorder and anxiety disorder. She is also extremely gifted and just finished 9th grade top of her class, while taking 10th and 11th grade honors classes. It has been a very interesting journey, handling both disabilities and giftedness.
some of the best preemie resources are the Preemie-L listserv for moms of preemies under 4 and Preemie-Child for preemies 4 and up. I highly recommend them both. Also get the book Parenting Your Premature Baby and Child, by Deborah Davis and Mara Stein - they also have a great website.
Sending good wishes and healing thoughts to you and Jolie

Donna - posted on 08/08/2010

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My daughter was born at 24wks+5days and only 1lb 10.1/2 oz. and was 15ins long. She was in N ICU unit for 3 months. She had difficult feeding so was feed by tube ever 2hrs and also trouble with her lungs.I lost her 3 times but she came back to me even more stronger than before.
I was with her every day reading small stories to her and i telling her how proud i was of her and tried to hold her hand, Just by giving her the sound of my voice made a big difference. It's hard but with all the love you can give helps so much and it makes a special bond. My daughter Cammie is now 7 yrs old and is fighting strong and as really no big health problems any more.
My prayers go out toYou and little Jolie i will be thinking about you both every day.
Donna

Misty - posted on 08/07/2010

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My daughter was also a 24 weeker that weighed 1lb 20oz at birth. She spent 142 days in the NICU & will be 2 in October. Believe me, I KNOW how hard the journey in the NICU is. It's hard to find other moms that truly had "preemies" that spend months in the hospital to understand how hard it really is. She also had IVH4 that resolved on it's own. Feel free to contact me with any questions you may have, I wish I had someone to talk to when my daughter was still itty bitty in the NICU! Prayers for you & your little Jolie's continued strength! I'm sure God will continue to hold her in his hands as he did our Courtney! They are truly miracles, savor every single day...

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HUGS!! I can only say that one of my great-nephews was born at 24wks (similar to you, my neice's water broke for no reason at 23wks and they were only able to keep him in for a week) - its been a lonnnng and tough road, he was in the NICU for about 7mos, BUTTTT he's going to be 8yo next month! He's a healthy and wonderful child. Still small for his age, but caught up developmentally and so much fun to be around. I'm praying your daily celebrations turn into yearly celebrations!!!!

Nikki - posted on 08/06/2010

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I will pray for you Lydia and Jolie now. :) Keep your faith in God above and His will shall be done. I asked God for his will to be done and give me the strength to handle it whatever He decided when it came to my son Ethan. Ethan was a 29 weeker and stayed In NICU for 3 months. He had a few scares ( heart rate problems, and terrible sleep apnea) Seems his monitor was going off every few minutes every time I visited. It was a scary and painful road and I know you feel helpless as i did BUT I put all my faith in GOd's will and God instilled in my heart that all would be just fine with Ethan. I received a call to come to NICU one day immediately and the pastor was there along side several doctors beside his tiny bed yet that moment was the calmest I have ever felt as I felt God's presence and I just knew he would pull through. The technology today is wonderful and Jolie has a great chance of continuing to get better. i know the hospital staff will do everything in their power to ensure she has a chance at life. Also the females are stronger in preemie cases. Boys do not fair as well so that is a plus. Again , I know how trying it is but keep faith and God will give you the strength no matter what. My son will be four this October so hang in there and you guys are being prayed for :) God Bless you both , Nikki & Ethan ...

Christina - posted on 08/05/2010

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I will keep you guys in my prayers! And if you want to kow anything about the nicu or preemie babies you should e-mail me at calebmama09@yahoo.com cuz my 7 month old daughter was in the nicu has a preemie for 3 months 2 day and she came home for a month and than she went back in the hospital for a week. She had open heart surgery before she was a month old but she is home now and she came home healthy and not on anything so if you ever need to talk e-mail cuz the nicu life is good and bad at times

Lydia - posted on 08/04/2010

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thank you all, ur prayers are so very much needed today she had a central iv put on her for better, beacuse she is so bruised up and she was smiling with me even thought she she had gone thru such a procedure. Tahnk you all so very much! and God bless you and ur little ones!!

Pip - posted on 08/04/2010

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Wishing you and your daughter all the best... My twins spent 3 mths in the NICU... such a roller coaster ride of highs and lows. I hope your time there will end soon and you get to take your daughter home. Best of luck

JoAnna - posted on 08/04/2010

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You are both in my prayers. Have faith that she will continue to grow and get stronger every day.

Serena - posted on 08/04/2010

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I can't say I know exactly what you are going through but I do understand the pain you feel in your heart when you see your daughter. My daughter had a whole bunch of tubes at first and I broke down the first time I went in there and subsequently for the next few days. Theres a reason they keep tissues in the NICU :)
I do know though that technology has come a long way and from the way it sounds you're daughter is a fighter and so are you. I will keep you in my prayers and just think when you are at her high school graduation this will all just been a memory and a great story to tell her :)

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