Preemies

Shunacy - posted on 04/11/2013 ( 82 moms have responded )

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I suffered from HELLP syndrome prior to delivering my daughter 14 weeks premature. She was born March 32, 2013 with a due date of July 3, 2013 weighing only 1lb 5oz 13" long. These last 11 days have been a struggle but she's doing ok, just taking things one day at a time. Any other mothers of preemies who can offer advice and comfort?

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Diane - posted on 04/16/2013

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I know it seems shallow, and I'm the least experienced here, but doing something nice for yourself everyday might keep your energy level where you need it. Like a warm bath, when your body allows, or reading a parenting article that's fun, just something for maybe ten minutes so you aren't so overwhelmed to the point of total and complete exhaustion taking over in the next few weeks. If it's way off base, please forgive and move on to those more experienced.

Amy - posted on 04/15/2013

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You probably aren't thinking about this right now but as I was reading someone else's post it reminded me of something. Solely because of your baby's prematurity she should be eligible for social security benefits for at least the first few months. I wasn't given this information until much after the fact. Try to talk to the hospital social worker and if they aren't helpful go straight to your local social security office. It isn't much but it could help to defray some of the costs.

Alda - posted on 04/14/2013

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Oh, and one thing I can't recommend highly enough - something I think each and every mother should have - is an apnoea mattress for when baby is home. It could potentially save so many babies from cot death, especially premies. xx

Angela - posted on 04/14/2013

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My daughter was born at 31wks July 3, was due Sept 3. I had Pre-E and developed HELLP at the time of her birth we had to do emergency c/s. I had to leave hospital with out her and spent 44 days visiting her everyday while healing from c/s.

I can only assume what you are thinking, and worrying about. But I can say from one NICU graduate to another everyday is worth taking pictures of her beginning stages of life at this tiny size because when she leaves she will still be small but as the months ahead she will grow infront of your eyes without you actually seeing it till you slow down and look at those early pix!! Don't worry about the tubes, alarms, nurses BE THERE in the moment with her.My daughter is now 2.5yr going on 22yrs old. When I look back on pix we had in NICU (we have tons) I tear up every time because she is a gift.

Here is something that I had come across AFTER she came home from hospital. I did find comfort in it and this day I still choke-up. You are Mom of a special Preemie that will only bring you tons more joy than you can ever imagine.

How Preemie Moms Are Chosen~*~
(Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew. Forrest, Marjorie, daughter. Patron Saint, Celia. Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

Yari - posted on 04/23/2013

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Hi All,

All these stories relate so much to the experience I went thru. I had a preemie as well. I was 30 weeks when I had my Bundle of Joy on May 19, 2011. He was 3lbs 7oz and 19 inches long. He was at the NICU for one month and a week. It was the saddest, hardest thing to leave the hostipal without my lil one. When I was being discharged and knowing that I had to leave and that he was going to stay there, it felt like the whole wolrd was falling on top of me, my heart broken into millions pieces, you go thru emotions that you dont know how to control it. I prayed to God everyday to give me strength. I went everyday twice a day morning and then evening after my husband got home from work. You feel emotionally and physically drained out. It was hard at first but once we saw how well our bundle of joy was doing it gave us a sign of relieve. We knew right then that from the day he was born he is a fighter and will always be a fighter. Now my bundle of joy is 23 months old and will be 2yrs old on May 19. He has other cousins which he is the smartest and taller of all. I am so proud and happy of my wonderful gift that God has given us. For eveyone in this post, keep your head up and remember to pray and have faith that if your lil precious gift is not home yet he/she will be soon. Dont lose your hopes, sooner than you expected they will tell you that you could take him or her home and that would be the happiest day of you life.

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Janee - posted on 06/19/2013

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I feel for you.three of my for were born premature. 1 @ 33 weeks and the other two at 28 weeks. One of the boys born at 28 weeks passed away 45 minutes after birth...he soul have been four.the other two are five and thirteen now. Pray, pray pray.....o cannot stress this. Get plenty of rest add you are not looking out for yourself. Allow her to get plenty of rest when the doctors request (even when you wanna strangle the doctor and staff when they tell you you can't see your child because she is to anxious) sing to her when you can, skin to skin every chance, read to her, and most of all tell her how much she is loved. She is your angel......bring God into that NICU.bless the doctors and staff.......she is worth it....He will deliver her....bless you and your family.......love always still morning Kelly :-)

Janee - posted on 06/19/2013

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I feel for you....all three of my for were born premature...my beloved Kelly did pad away 45 minutes after birth. He was 1 lb5oz and 9 inches long. Be blessed....let her rest when the doctors request you too. Sing to her, read to her, every chance you get tell her she is loved.have add much skin to skin as you can.you get plenty of test as well. NICU can be overwhelming of you don't pace yourself.

Sue - posted on 06/01/2013

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My heart goes out to every one of you because I've been there and know what it's like to go through this and how scary it can be!

What is so concerning to me is 20 years later after our son was born at 28 weeks and thank God didn't have so many issues, that now days I'm seeing so many babies being born premature and some not as early as our son that have so many health issues.

It's making me wonder about all the junk in our food, preservatives, pesticides, water, GMO's, gluten/wheat, chemicals, etc? Why are so many babies being miscarried and/or born early with so many health issues now days? Does anyone else wonder about this?

Blessings!
Sue

Joanna - posted on 05/02/2013

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My beautiful little boy was born on 25th feb at 27 weeks. he weighed 637g. He has had 3 operations, got a stoma and 2 holes in his heart. He is still on Si-Pap and not feeding or putting on weight. We are now 66 days in NICU and just taking it one step at a time. We know we have months still to go in here and several more operations but our boy is a true fighter. His pure determination keep us going and as his little personality develops it makes the days more bearable. Keep hanging in there.... they are worth it.

Leti - posted on 04/25/2013

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Hello Shunacy. I too suffered from HELLP syndrome. Delivered my son 12 weeks early. He weighed 2lbs 3oz. His stay in the nicu lasted 87 days. Toughest days of my life. You are right, one day at a time. Sometimes just an hour at a time, is how I got through it. It is tough, but once you get to take your baby home, it will all be worth it. Remember, its a marathon, not a sprint. Take care of your health too. How are YOU feeling?

Diane - posted on 04/24/2013

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Tracheostomy: It seems really scary, but they put a small opening in the lower part of the baby's neck, below the voice box, so that they can give oxygen and breathing treatments to her. It's actually a good thing, because it sounds to me like she's been working too hard to breathe, and now they will make sure she gets the appropriate amount of oxygen. When it comes time to remove any tubing, the scarring is minute, and she'll be better off because of it.

Vicki - posted on 04/24/2013

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My daughter "Faith"was born on 3 July 2000 she had stopped growing at 24 weeks so at 27 weeks the Drs decided to give me an emergency cesarean due to her very small size. I was found to be suffering from Pre eclampsia . She weighed 526 grams and was 31 cm long and her head was the size of a tennis ball or smaller. I learnt very quickly to take 1 day at a time and it was usually 2 steps forward and 1 step back. She was in the NICU in another town (400 kms from our home) fir 2 months and then moved to our town hosp for 5 more weeks. She went home on oxygen for a year but other than having Chronic Lung Disease she was fine. It was always gonna be 1 step at a time for a long time. My daughter will turn 13 in July this year and apart from some learning difficulties, she is fine. I had a long struggle with her and I did it on my own. My only "rock of support" was my 12 year old daughter, who's world was completely turned upside down with the early arrival of her sister. I learnt that you need to talk to others about your concerns and above all "Ask for Help" if you need it, cause I didn't and I wish I had. Good luck with your baby and all the best for the future. Premmie babies rock......

Jo - posted on 04/23/2013

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My daughter was born in my sixth month at 2lbs 5 oz, only one lung developed. She actually lost a little weight. Every day is a blessing. She's forty years old and has four children after doing to tour in the US Army and finishing college. Pray and have faith.

Missy - posted on 04/23/2013

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Hello, i just joined. I am sad, confused and i have a lot emotions. My daughters doctor says she needs a surgical procedure done which is called TRACHEOSTOMY . Just the name alone is scary. have anyone experienced that and can you please tell me the outcome.

Diane - posted on 04/19/2013

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The post from Crystal made such good sense...finding other preemie mommies in your area and meeting with them....Maybe after a phone call, you might get some affirmation in your feelings, and make a new friend or two to walk your journey with you. Not only that, but to share theirs as well, and become close as mothers, raising your children together. It really does take a village to get and give support, bounce ideas off of, share you pain and your joys together. Much more than an old granny like me could give, who's never had to go through the anxiety ridden, constant agony that can come and go through your experience. You need to know you are loved by others going through the same thing, or, who have gone through it and come out the other end in tact.

Diane - posted on 04/19/2013

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The post from Crystal made such good sense...finding other preemie mommies in your area and meeting with them....Maybe after a phone call, you might get some affirmation in your feelings, and make a new friend or two to walk your journey with you. Not only that, but to share theirs as well, and become close as mothers, raising your children together. It really does take a village to get and give support, bounce ideas off of, share you pain and your joys together. Much more than an old granny like me could give, who's never had to go through the anxiety ridden, constant agony that can come and go through your experience. You need to know you are loved by others going through the same thing, or, who have gone through it and come out the other end in tact.

Leah - posted on 04/18/2013

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My twins were born at 31 weeks, weighing 3lbs 5 oz and 3lbs 3 oz, after enduring 3 long years of infertility treatments. They were in the hospital for 5 weeks, and thank the Lord, they had no major issues but Mommy was a complete basket case! Please know that they do pull through, grow up and live healthily and happily.

Rosa - posted on 04/18/2013

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I also suffered from the same thing (hellp syndrome). My son was born at 28 weeks on 3/2/2013. He is still in the NICU. HE weighed 2LBS 4OZS and was 14" long. It has been the hardest thing I have had to go through. It gets a little easier to see him as I see him growing and doing better. I still cry, that is just something I can't help. I have 2 other children and they were not preemies so I have had a hard time adjusting. He is 6 weeks old and weighing 4 LBS 11 ozs and is 18" long. Soon you will see the little milestones she will make. That also has helped me. When he went from the ventilator to the cpap and now the vapotherm. I go every day to see him and try to hold him as much as possible. I talk to him and tell him how much we love him and want him to come home. I noticed when I tell him that he tends to do better. He had 4 blood transfusions. 2 were from the blood my husband donated. Its a hard roller coaster ride we are going through. I just try to keep myself thinking soon he will be home. Nothing anyone tells me helps me feel better that he is in the hospital and not at home. I noticed what kind of helps me is when I'm holding him and just staring at him.

Rosa - posted on 04/18/2013

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I also suffered from the same thing (hellp syndrome). My son was born at 28 weeks on 3/2/2013. He is still in the NICU. HE weighed 2LBS 4OZS and was 14" long. It has been the hardest thing I have had to go through. It gets a little easier to see him as I see him growing and doing better. I still cry, that is just something I can't help. I have 2 other children and they were not preemies so I have had a hard time adjusting. He is 6 weeks old and weighing 4 LBS 11 ozs and is 18" long. Soon you will see the little milestones she will make. That also has helped me. When he went from the ventilator to the cpap and now the vapotherm. I go every day to see him and try to hold him as much as possible. I talk to him and tell him how much we love him and want him to come home. I noticed when I tell him that he tends to do better. He had 4 blood transfusions. 2 were from the blood my husband donated. Its a hard roller coaster ride we are going through. I just try to keep myself thinking soon he will be home. Nothing anyone tells me helps me feel better that he is in the hospital and not at home. I noticed what kind of helps me is when I'm holding him and just staring at him.

TIFFANY - posted on 04/18/2013

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i have 3 childrens all preemies...for me when i gave birth to my first daughter it was simply hard for me to deal with.....because the first thought and reaction is ...its my fault maybe i didnt do something right ....what i can tell you at times things will get easier just be your child support system ....i believe they can feel your vibe and just pray if you believe in that..i just gave birth to a boy january 3 2013 after being told it was basically not safe to have another child prior that my second child erupt my uterus but that god he was healty but stood some time in the nicu unit..basically best advice is to stay strong with head held high god is big let me tell you! i hope this kinda helps u

TIFFANY - posted on 04/18/2013

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i have 3 childrens all preemies...for me when i gave birth to my first daughter it was simply hard for me to deal with.....because the first thought and reaction is ...its my fault maybe i didnt do something right ....what i can tell you at times things will get easier just be your child support system ....i believe they can feel your vibe and just pray if you believe in that..i just gave birth to a boy january 3 2013 after being told it was basically not safe to have another child prior that my second child erupt my uterus but that god he was healty but stood some time in the nicu unit..basically best advice is to stay strong with head held high god is big let me tell you! i hope this kinda helps u

Sue - posted on 04/17/2013

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Our son also came home on a monitor and it was like brain washing! I hardly slept at all those days! He would move around and his leads would come lose and that thing would go off right when I got to sleep. Finally after about a month he was not having any spells so we asked the doc about taking him off and they said ok. He slept in my room though in his little bassinet and I was constantly watching over him to see if he was breathing! Whew! Hang in there!

Sue - posted on 04/17/2013

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When our son was born premmie 20 years ago, I got several books so we could know what was happening. There are some very intelligent people down throughout history who were born premature! And back in those days they were put in a shoebox and prayed over to survive! No medical technology back then. I'm sure now after 20 years it's even more advanced! Hugs to all!

Sue - posted on 04/17/2013

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When our son was born premmie 20 years ago, I got several books so we could know what was happening. There are some very intelligent people down throughout history who were born premature! And back in those days they were put in a shoebox and prayed over to survive! No medical technology back then. I'm sure now after 20 years it's even more advanced! Hugs to all!

Shunacy - posted on 04/16/2013

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I cry from reading you guys posts everytime I log on! I can't believe the support and encouragement I've found on this site. It's definetly what I've needed over these last two weeks! I sincerely appreciate everybody's stories and kind words and though I know each child is different,just reading how you guys preemies are leading fairly normal lives gives me so much hope! I too was a preemie born at 36weeks in 1989, I try to look at myself as encouragent,I don't have any major medical problems,I was a straight A student from kindergarten until graduating from high school,Ive been in the military 5 years and I'm currently in nursing school. If I can lead a normal life I know my babygirl has the same drive and determination that mommy has. When I visited Kaelin today,I read a few of your posts to her while kangarooing as encouragement to keep progressing so she can be a preemie success story as well. Her heart rate had been in the 180s 190s all day but while I was holding her and after putting her back in her isolette she has maintained a 168 heart rate, 100 o2 sat and 55-65 rpm. It's truly amazing how touch and hearing my voice changes her mood. Thank you guys so much for the advice and prayers and well wishes. I feel as though I've found a new family with you. :)

Mikaela - posted on 04/15/2013

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My older sister had a premature baby born in 2011, it was one of the scariest things my family has ever experienced. He was born on October 29th, just two weeks after my daughter was born. My sisters due date was January 12th. My nephew weighed in at 1 lb 15 oz but quickly lost 5 oz during the struggle to get him to eat. He was a fairly healthy little boy for being so premature but it was still a very scary experience. While my sister's family's biggest goal was to get my nephew home for Christmas, they knew it was best to take it one day at a time. The biggest problems they faced where keeping his body temperature at an average and getting him to drink his formula/breast milk and keep it in. As time went on, they were happy to finally get the news on December 15th that my nephew would be able to come home December 18th! It was such a relief to hear that he was finally up to the required weight limit of 5 lbs and he was able to make it home for Christmas! Then on January 21st my nephew was rushed to the ER after needing CPR performed on him as he quit breathing in the back seat of the car. The emt's were lucky to revive him but it is still a question as to what exactly caused him to stop breathing. Doctors believe it was the formula that he was put on which continuously seemed to make him spit it up and give him upset stomachs. It took several different tries in formula to get it right after my sister had to give up breast feeding due to a low supply. Since January 21st, 2012 we have not ran into any more big problems thankfully. It took several months to get my nephew onto the correct growth charts but he is now a happy and healthy little 18 month old who actually weighs MORE than my daughter now! We are so thankful for him in our lives, he brings a smile to anyone's face! :)

Lindie - posted on 04/15/2013

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Hi. I am so sorry that you had to go through that. I was diagnosed with HELLP syndrome in 2008 and my son was born at 32 weeks gestational. I was in ICU for a couple of days while my son was in NICU so I didn't get to meet him at first. I remember feeling anxious and scared all the time - not exactly how I pictured my first weeks as being a mom. I didn't know what I was doing. I didn't get to go to prenatal classes or experience any of the ordinary things expectant and new mothers were experiencing. I had to deal with monitors and learned very early about saturation levels etc. Apart from that I was guilt ridden thinking that my body had somehow failed us and what if I had done things differently or been more careful? In order to spend some of that negative energy I embarked on a research mission and found that there is no way I could have changed the outcome anymore than I can change water into wine. When I realized that, my focus shifted and I started writing letters to my new son, telling him everyday about our journey, about my fears and my hopes for him. I cried and laughed in the letters, It was a great outlet and I found I couldn't wait to tell him about our day - that is when I finally started healing and he followed suit. The only thing we can do for our babies is love them, talk to them and hold them and there is no greater healing power than a mothers touch - the rest is up to the doctors. The reason why I am telling you this is because you need to take care of yourself in order to create a stress free environment for your daughter so that she can heal - babies are connected to their mothers in a way that defy logic. I look at my son now and I am in a way glad about our journey because it has helped shaped us both into the people we are today. Remember that both you and your daughter are awesome. Good luck Shunacy - it gets better everyday.

Danielle - posted on 04/15/2013

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I had HELLPS 10 years ago with my first child. It's scary, my blood pressure took a year to go back to normal. Take care of you, you can only do so much for your baby. I learned as much as I could to help my daughter and went to the hospital as much as I could. Communicate with the medical staff. Ask to kangaroo your baby, pump breast milk, it rally is best for preemies. Stay calm a much as you can. eat beets, they are good for your liver. Your body will heal. My second and third kids, no issue. My first daughter just turned 10 and has no problems from her prematurity of 13 weeks weighing 1 lb 12 Oz. Utilize all help available to your child. Early intervention of physical therapies, all of it. Pray to God, lean on your support, enjoy how tiny your child is, it will change quickly.

Carissa - posted on 04/15/2013

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My twins were born at 27 weeks gestation. They just turned 16 and got their driver's permits. They are doing great; truly awesome kids. I remember those days in the NICU. I think I developed a form of PTSD and Post Partum Depression. PTSD because seeing your babies in this state, living the roller coaster, is traumatic and shocking. Do what YOU need to do. If you are spiritual at all, pray. The combo of docs, medicine and faith is what, I believe, helped my babies and me. I will say a prayer for your sweet little girl-- if that is okay. Sorry, I don't want to offend anyone. Please keep us posted as to how she's doing. Power to the preemies!

Amy - posted on 04/15/2013

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I have been a level 3 NICU nurse for 15 yrs and I have the upmost respect for everything parents go through. No baby is ever the same. No outcome is ever the same. It is a highly stessfull job with immense rewards and sometime extreme sadness; and always stressful for parents who are desperate to see greatness in every situation. My advice is to communicate with nurses, doctors, therapists. Ask lots of questions. Please please please try to remember that there is not only one way to do something. People have certain ways they prefer to do things- it doesn't necessarily make it wrong. Please be patient. Your babie is running the show. The more we push sometime the more they back track.NICU is a roller coaster- some days are good some days are not. Rey to remember that they aren't supposed to be in this world yet so you would be seeing this craziness- have faith that things will happen according to divine plan. Remember we are all part of your team and want the best outcome for your family no matter what that may be. Kangaroo as often as possible it will double our milk supply. On a side note, families that constantly claim about staff or come in with negative attitudes all the time drive away staff from wanting to take care of their babies whereas families that are friendly and show appreciation have a better experience. No nurse does this job without loving it and wanting to make a difference

Tracy - posted on 04/15/2013

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My daughter was born 16 weeks early, weighing 1 lb, 2 oz. It was a very rough road, for her and for us, her parents. Family/community support was so vital. I'm happy to say, now at 8 years old, weighing 45 lbs, our daughter is doing great and is a truly amazing being! As soon as you're able to do skin to skin holding, do it! Breast feed if you're able (ours was basically "recreational" for bonding, but was very special). Those preemies are fighters and the technology out there is amazing! Sending you and your whole family lots of love and support.

Michelle - posted on 04/15/2013

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I had a little girl 10 weeks early. I spent every day and almost the whole day in the NICU for 28 days with her. She progressed well and the nurses in the NICU were the best. Listen to them and ask them anything. At 6 years old you would never even guess she was a preemie. In kindergarten she is doing well and learning everything. Just take as much time as you need with her every day. Sleep at night b/c you can now but not once she comes home. Just enjoy her!

Zenobia - posted on 04/15/2013

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I had high blood pressure and I deliveryed early as well. I was due in September and I had my wonderul son on June 25, 2011. He was 1lb 9oz and had to stay in the hospital for 3 months. My son is a fighter and he came through. Your daughter will be fine. Premature babies are very strong. You make sure you visit often and talk to her, read to her, touch her. Even if you stay only 20 minutes a day because is it very emotional for Mom to.

Sue - posted on 04/15/2013

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Our son was born at 28 weeks, 3 lbs in 1992. They predicted he would be 1 1/2 but he was really big. I was 6 months pregnant when my water broke and he was born a week later. I remember pumping and take his milk every day. They had to put it through his nose and he would have spells. He was in NICU for two months and came home at 5 1/2 lbs. It was very challenging and tough for us to go through. We had a very strong faith and many were praying. I still remember all the bells going off when he would stop breathing and how scarey that was. He would go up and then down. Each day got better and better and he grew stronger. He knew he was loved! We were there every day! He's now 20 years old, 6 foot tall, very handsome and smart. He attends UT Permian Basin University in West Texas. I'm praying for you and your little one! Hang in there, it gets better!

Jesyka - posted on 04/15/2013

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I haven't gone thru what you going thru I will keep you and your little one in my prayers. With the love you have for your little one she will outcome it and praying that you would have her soon in your home.

Daphne - posted on 04/15/2013

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Amy is correct- this may not be something you are thinking about right now - but because of her birth weight alone she will qualify for disability which will help tremendously with hospital bills - (which are going to stack up- and something you should not be worrying about right now) My son was born at 28weeks weighing 2.2lbs because they knew he was going to come early I had steroid shots twice before delivery.. he lost down to 1lb 12 oz and was only 13" long had 2 surgeries before getting to come home (because of issues most common with premmie boys hernia's etc) - Dont be afraid of all the alarms going off in the NICU - you will learn to adjust to them - I pray she does well and in a few years you will think - was this girl really a premmie! Once mine turned 6yrs old he began to not be the runt anymore! NOW he is 9yrs old - weighs 110lbs and is almost 5ft tall - the starting pitcher of a local travel team and has NO health issues besides asthma.
God Bless!

SUJATHA - posted on 04/15/2013

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My daughter was born in the mid-seventh month and weighed only 1.26 kgs. Don't worry. She is doing fine right now. Just a little slow in speaking. But otherwise she is more active than normal children. Take it slow and stay put for a while. Don't be tense because that will affect your flow of milk. Eat the right foods that trigger a healthy flow of milk. Happy mothering. Things are going to be fine.

Kristine - posted on 04/15/2013

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My twins were born March 23rd,2012..my due date was July 10th. Very similar to you. They were 1lb 4oz & 1lb 7oz. There is nothing that can prepare you for what is to come! I didnt think my babies would ever come home. I honestly didn't think they would. The main thing I can tell you is be there with your baby as much as you can be! It is hard to endure day in and day out...but your baby needs you! I was fortunate to be able to quit my job(my husband worked) and be at the hospital everyday all day! I would sing to them, pray with/for them, and talk to them through the isolette. I was their biggest strongest advocate. I would get to know all the doctors and nurses and ask questions all the time. There is a huge difference in babies that have support and that don't I found out. I saw babies that didn't have their parents support day in and day out and it truly makes a difference!!! When it was too hard I would go pray in the chapel..somedays the only peace I had. But the main thing that got all of us through is Jesus Christ! After a looong hard 5 monthes in the NICU, my boys have been home since August!:) both on oxygen and my one son has an NG tube still, but doing miraclous!! Write me if you want to talk!:)

Tracey - posted on 04/15/2013

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My daughter was due on 23/10/2005, she arrived on 03/09/2005. She was an emergency C-section, after being in labour for 5 hours, and already having written on my notes that I suffer from sciatica, so when I say I can't push I can't, she was whisked away to SCBU. she was delivered at 23.45, I was taken to a recovery room and left there until some one came to see me at 08.00! Oh they'd had a busy night! I was taken to the maternity ward, and basically left to keep asking questions. I didn't get to see her until late that afternoon. Yes, I did kick up a stink, so the lovely midwives did me a favour and let me stay on maternity for an extra 2 days, ( I was there for 6 altogether, pure hell). I was on a main ward in maternity, Ok there were only 4 beds to a room, but when everyone around you has there baby and you don't it's heart breaking. I even had some of the other new mothers turn away from me and whisper to their families. I thought I was doing the right thing by hanging in there and being close to my baby. How wrong was I. when I finally discharged myself, had a decent nights sleep and came back in my own time to see my little girl things started to get better. I was told that because she was pre 35 weeks she wouldn't suckle. Well, she did, began to thrive. luckily for me a friend was a SCBU nurse and had worked on the ward so could 'translate' what was happening. Altogether she was on SCBU for 3 weeks, came back in for the last week to stay with her in their special room. When we came o take her home we were told that she had crashed twice, once the night she was born and again 3 nights later. I arrived home without my local midwives being informed, they did not know until I phoned them in tears 2 days after we got home. Once home she really did start to thrive, I continued with breast feeding and she soon went through both boobs and a bottle at feed time. By 4months I had to start her on solids to keep her satisfied, and give me chance to catch up. She is now 7, the tallest in her class and the most beautiful child. She has a few issues with needles and pain, but we are working through this. She is incredibly bright and can tell me where anything is that I have mislaid. I didn't follow the advice given to me, just do what you think and feel is right for you and your baby.

Sheila - posted on 04/15/2013

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Hi, slightly different response, I was a preemie, back in the early 70's!! I was born mid February, when my due date was the end of May! I weighed 2lb and was born with what doctors thought was a dislocated hip - as my right leg was twisted.
I underwent a great number of operations as a child, which was probably a lot worse for my parents than it ever was for me, I got spoilt rotten and ate lots of ice cream!

Now I lead a full, normal, happy life.... am a Mammy to a beautiful 3 year old daughter via fertility treatment (but my infertility is not in any way connected to my premature birth).

Yes there may be hurdles to face, and tears to shed....but these babies may be small, but they're tough little fighters....wishing you and your little fighter all the very best.

Aleshia - posted on 04/14/2013

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My phone is not wanting to cooperate. Long story short, his biggest problem was getting of the vent. He still doesn't eatwby mouth and is delayed. Smart as a whip

Aleshia - posted on 04/14/2013

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Hello, my son was born at 24 and 2, he weighed 1lb. 6oz. and was 11.5 inch long. Nobody could have prepared us for his 366 days spent i. n the NICU. I had to reon my faith to sustain me I didn't realize the severity of the situation because I walked around in a fog for that year, I'm sure it was do to the shock of it all. I had several issues with this pregnancy, which may have caused my water to break at 23 and 5, prolapsed cord caused the emergency ceas

Melissa - posted on 04/14/2013

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Medicine is doing amazing things with Preemies these days. Spend as much time as you can with her talk to her, she knows your voice and it comforts her. Touch her even with only one finger until she is strong enough to hold. Pump breast milk for her to be given as soon as she is strong enough to have it it will be very beneficial to her growth and weight gain and her brain development. Plan that you ARE going to bring her home. Pray for her and get others praying for you and her; prayer makes a difference. What is her name? I will be praying for her.

Jennifer - posted on 04/14/2013

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My son was born at 25 weeks gestation weighing 1 lb 12 oz. He was 13 inches long.
It is a world I never knew existed until I was smack dab in the middle of it. My water broke (slow leak that was discovered at 21 weeks) and he managed to stay in the womb for 4 more weeks.

I found writing my thoughts and reaching out for support and prayers really helped me through everything. There is (as you can see from even just the comments here) a whole network, a community of parents who have gone through similar experiences. I will keep you and your daughter in my prayers.

We are getting ready to celebrate Lochlan's 3rd birthday in just a few weeks. He is one of the most amazing people I have ever known. Such a miracle, such a blessing. He has taught me so much about myself and the world. His strength and determination is inspiring. He has quite the personality. So funny and loving and happy. If you'd like, you can check out my blog and take what you can from it. I started it from the day my water broke.

www.mcdonaldsmiracles.blogspot.com

God Bless,
Jennifer

Staci - posted on 04/14/2013

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I suffered from preeclampsia complicated by HELLP before my son was delivered by emergency C-section on Dec. 27, 2002. My due date was Feb. 20, 2003. He weighed 3 lbs. 12 oz. and was 17" long. He spent 20 days in the NICU. It was a very difficult time. The hospital where he was delivered was over an hour away from our home; luckily we were able to stay in the Ronald McDonald House during his stay, but we only got to go home twice (one night at a time) during that time.
He is happy, energetic ten year old. He has some mild developmental delays and asthma, but otherwise he's healthy. He's still on the small side for his age (only about the 5th percentile for both height & weight).
My advice is to spend as much time as possible doing skin to skin. That makes a huge difference. Listen to your instincts when it comes to what is best for your baby. Do not feel guilty for needing to take a little break or a night out; just call in for updates. Remember to take care of yourself - if you don't take care of you, you can't take care of your daughter. And this will not last forever - things will get better!
Best of luck to you and your family!

Aubrey Ana - posted on 04/14/2013

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Just enjoy the time you have with her. I had my baby at 34 weeks because I developed severe pre-eclampsia. She was born 3.13 lbs. After staying a week in the hospital, due to the lack attaining a normal blood pressure, I had to leave my baby in the NICU for a month. I know its not as bad as experiences that other families have gone through, but still not the ideal nor healthiest situation for anyone. Anyway, I visited her every day, and prayed for her health and well being. And for my own because I wanted to be healthy mentally and physically for her. Everyday she got a little bit better. The day she was able to feed through a bottle was fantastic! And I thank the Lord all mighty for guiding me and helping through those scary days. What I would say to you is Pray. Just pray for your and her health. Also enjoy her company, sing to her, talk to her, hum, pray with her, touch her hands (if your not able to hold her) , caress her. Just enjoy everything about her. Not only will you bond with her, you will also share the love and connection needed to make you both healthy. My daughter is about to celebrate her 4th b-day. And she is a vibrant, intelligent, animated , beautiful little girl. And I can only thank my Lord Jesus for everything. I will pray for you both. But just take it one day at a time, one moment at a time. Before you know it, you will be looking back on these days with grace and appreciation for getting through it all. And looking at your daughter in amazement! God Bless you and your family.

Danielle Elizabeth - posted on 04/14/2013

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Sorry I know I already commented but reading this post has brought back do many memories of the nicu days. I wanted to add I honestly thought that week was the hardest 7 days of my life , but now looking back at it that experience shaped me as the mom I am today. I amazed myself with the " super mom" powers that overtook me once I thought my baby was in danger. I showed myself what I was capable of and it has honestly gave me that much more of a bond with my beautiful daughter and gave me a real life lesson on what's important . I ran around the hospital like a crazed woman with no sleep for 7 days after just having a baby and I got so swollen I cried when I tried to lift my legs into bed when I finally got to lay down bc it hurt do bad, but that experience showed me exactly what type of mommy I was and wanted to be ; which was one that would sacrifice and do anything for her baby. This tough time will really show your true colors and make you appreciate you a little more too

Tina - posted on 04/14/2013

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My daughter was born at 29wks gestation...She was only 2lbs 10oz. From meeting other moms in the NICU, and knowing my daughter had no organ issues at all, my time waiting was probably not as difficult as yours. Having said that, when we started out, I put on my "mommy armor" and prepared myself for a long hull. There were a few things that made the time more bearable. My faith in Christ was number one. I trust that God is sovereign and our lives are completely in His hands. I knew that there was a purpose for our daughter being born early and I needed to keep strong in doing the things that the Lord called me to do during that time. I was already a mother of 4 other children that I needed to continue to care for so as I made time to be at the hospital each day, I also made sure I came home to be with the older ones when they got out of school. Then when I was at the hospital, not only did I spend as much time as possible with my baby, but I also did everything I could to be part of her care as well. We would Kangaroo for hours at a time each day. I changed diapers and bathed her. I pumped milk for 3months. It was a good feeling to know I was caring for her. I was there during all of her hands on care when I was there and even did most of that when I was unable to hold her. I wanted to know as much as her nurses did, so I was always learning. I also surrounded myself with a great support group. Many friends from my church and I even met nurses and parents in the NICU that I could talk with regularly. Two and a half months flew by. The hardest part of the entire experience was the up and down when it was getting close to her discharge. I would prepare for a day that she would come home and she would have a BRADY. One day she was to come home and then that day we got a call that she wasn't ready and we needed to wait another week. Overall... it was tough, but it is an experience I wouldn't change for anything. My daughter has been home now 2 1/2 months. She is doing well and still growing. She is almost 5 months old and weighs only 9 lbs 8oz. But despite she is not even on the percentile chart for her age.... she is exactly where she should be developmentally. She would have been born Feb8th and she is doing exactly like she should be if she were born at that age. One other thing... if you are able, I recommend calling your local WIC organization. I never recieved help financially from the government for anything, but due to the fact that Danielle was unable to nurse, she had to go on formula. That cost was so expensive and a kind friend told me just to call and find out information. Danielle's formula has been completely covered. What a blessing that has been after all this.
Hope some of that helps. My blessings to you and your little one!

Amy - posted on 04/14/2013

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I had HELLP at 29 weeks and my son was delivered at 2 lbs 3.3 oz. He spent 49 days in the NICU. It was a rollercoaster ride. I felt very alone and that we would never get through it. 4.5 years later he is a typical preschooler, just off of his feeding tube, playing t-ball, and getting ready for kindergarten in the fall. It's incredible to look back on how quickly that NICU time seems to have gone by (it was the longest 49 days of my life while we were there) My advice to you is to visit as often as you can, don't beat yourself up if you miss a day, call for updates as often as you need to (even if you are calling several times a day/night, the nurses are happy to talk to you) ask a ton of questions, don't be afraid to challenge something you feel isn't quite right, lots of skin to skin contact, read to your baby (even if it's the newspaper - it occupies your mind while she get's the benefit of hearing your voice) get to know the nurses - they are miracle workers and it will make you feel better if you know a little bit about the people taking care of your baby, don't compare your baby to others, celebrate EVERY milestone, talk to the other parents in the NICU - no one knows better what you're going through than them and you may end up building a great support network and even lasting friendships. Whatever happens, you will get through this and you will adjust to life with your preemie. It may not be how you dreamed it would be before the HELLP, but you'll never be able to imagine your life without her. The things you go through in the NICU will make you appreciate every single moment in a way you never could have imagined. Most importantly, keep telling yourself that you will get past this. Because you will and things will be just fine. Hang in there. I know this is a very hard time.

Rebecca - posted on 04/14/2013

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I had a son born on July 27, 2010 @ 26 wks gestation. His edd was October 30, 2010. I had HELLP syndrome as well. I went up almost daily. He had a very long and sometimes rough road. I asked a ton of questions, even if to me they seemed dumb, but I wanted to make sure I understood everything. I called a couple times a day to check on him before I went up in the evening. I usually went up after I got my 2 yr old in bed. He came home eating from a bottle and was on a nasal canula (oxygen like old people) and on a heart/apnea monitor. He is now a very active 2 yr old. He will turn 3 this summer.

If you have HELLP once, there is a 50/50 chance you will get it again every pregnancy after that one. I unexpectedly got pg again when he was 6 mos old. I got lucky to not have it during that pregnancy although I did have a higher risk pregnancy because it was triplets and they were born on July 26, 2011 @ 28 wks gestation.

Paula - posted on 04/14/2013

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I also had HELLP syndrome and my twin boys were preemies. It is a long struggle, but everyday brings new surprises, smiles, joy, and pure wonderment. We held ours alot, lots of skin to skin, talking to them etc. But don't forget to take care of yourself as well. It is tough on everyone and your little one needs you for the long haul. :)

Danielle Elizabeth - posted on 04/14/2013

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I didn't have a premie , but I did have an infection due to my water being broken for too long before I delivered . They kept my baby in the nicu for a week to make sure she didn't have the infection also. I watched her go through a spinal tap and have antibiotics intravenously through a vein in her little head. They found out she did not have an infection which was a relief and made it harder in a way that she had to go through that for nothing . I breastfed her and slept on a cot in the nicu for the entire week. I don't believe I slept for more than 3 hrs a night the entire week. I know how you feel and how the worry can consume you, but you need to be strong for your lo and focus on the positives . Remember all the extra effort it takes to care for a child with some extra complications is so worth it , and honestly I do believe those of us who had to watch our babies struggle or worry about their health end up appreciating their perfect little healthy bodies even more than another mom. Just hang it there and one day all the hardship will seem like a distant memory but you will be stronger , more thankful, and appreciate your baby just that much more for the rest of your life

Monica - posted on 04/14/2013

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I have a premie (my miracle, my pride and joy, God's beautiful blessing to me). sleep when she sleeps breast feed her as much as she wants to. Hold & cuddle her a lot as momma is the most important one to her right now, tell her you love her all the time. she will know and understand even though she is not able to tell you. my baby has slept with me since she came home from NICU everynight and loves it...you may want to consider letting her sleep with you despite what the doctors or any one else says to you.
Remember she was in your womb for months before coming out, she felt safe, loved and protected there. then all of a sudden she is out and separated from you, but she does not have to be, you can hold her close to you at night while sleeping and the nice thing about her sleeping with you, it helps you to get a little more sleep and she can nurse from you right there in bed as you are both sleeping. you only need to get her up to change her diaper. this creates a loving strong bond with baby and momma and more that you do as well. God Bless to you and your baby...lots of love and light...

Nature (Ash) - posted on 04/14/2013

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I Know it is hard for you right now. Things will get better I promise. My babe was born at 32 weeks and weighed 1lb. She spent 75 days in NICU and is now 7 years old and running around driving me crazy. LOL Things will get hard at times but as long as you are strong you will get through this.

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