How did you deal having a premie baby?

Kimberly - posted on 09/10/2010

I guess I had a couple of weeks to prepare myself for it. I had placenta previa and she kept measuring small at the last few visits and they said she'd do better out than in. I think my husband and I momentarily put the excitement of getting to meet her so early before the fear of what was to come. I went into it knowing that Texas Children's sees preemies much younger than 32 weeks and they have done phenomenally well.I put my trust and faith in them. We almost lost her at 4 days old but she is a little fighter. We had a rocky road and I sometimes feel like I'm not off the preemie roller coaster just yet, but I don't have any other choice other than to do what I have to do. She was in the NICU for 3 months to the day. She's 18 months now and is the light of my life. It has definitely been an experience.

Kristel - posted on 05/12/2010

Same as above...I know what you are going through. My son was a premature by 14 1/2 weeks, weighing 1 lb 10 oz. I did a lot of praying during his stay in the NICU! And, I still do! They gave him a 50/50 chance to survive and he had IVH4 with hydrocephalus, BPD, AOP, was septic at birth and even died but was resuscitated.
I had a hard time dealing with him being so far away from me(an hour and some change) but I kept in contact with the NICU , calling and visiting everyday, looking into his file and asking questions. I got support from other preemie moms I had met and from my family and friends.
If you want to talk, just PM me! God bless! ♥

Pamela - posted on 05/12/2010

I wish I had found this website while my baby was in the NICU. Dd not have much info while going thru it all, now my 2lbs 6 oz 30 weeker is 19 month and 18 lbs and I am still very emotional over the whole NICU experience. And yes, other who have not gone thru it do not understand. Good luck, and congrats on bringing your baby home.

Tasha - posted on 05/09/2010

Im so so glad to hear that every one's child is doing great now that just brings a smile to my face :-) Its great to have other moms that know what I went through to be able to relate to everything.. My son is now 6 months old and weighs 20lbs! he is healthy as can be and growing great.. He gets a denver test done every couple months to check his development since he was a preemie... and they take his age as 4 months since he was 2 months early and his motor skills he is doing what a 9month old would be doing and his verbal skills is what a 7 month old would be doing.. he still isnt crawling yet but he tries so hard it just makes me smile at how well hei s doing and its starting to push away the bad things :-) I am so so greatful and he hasnt had any real bad complecations and he is doing so great!

Schmoopy - posted on 05/05/2010

I understand. I had a 29 weeker, who's now 7 years old.

I don't think you ever get over something like that. I still feel sad about my daughter's arrival into this world. I feel guilty when I notice little idiosyncrasies that she has because I know they're probably caused by her prematurity.

On the other hand, I feel so amazed and grateful that my daughter is as healthy and happy as she is now! I can't believe a baby who was born so early can turn out to thrive like she has.

You'll probably always feel a loss of your vision of how motherhood is supposed to be. But time will lessen your sadness. And your baby's growth and accomplishments will fill your heart and push away all that bad stuff.

Hang in there.... (((HUGS)))

Camille - posted on 05/04/2010

I feel you..my daughter also was born early 26 wks..she spent 3 months in the NICU..I was the most healthiest person exercised, never smoked in my life, eat everything that was good for the heath of my baby..and no history..but it happened to us..I started spotting..went to the hospital 6:30 am in the morning and was told that I was 2 cm dilated..really could not rap my mind around it...It was difficult but I was at the hospital everyday, until my husband and parents told me that I had to rest( had a c-section).I was in pain but I had to be there. Did take 2 days but that was enough..rain or shine...she had alot of complications...I will not trade this experience though..learned alot.but God had a plan, everything happens for a reason..and my little girl is a fighter..alot of steps was taken to stop her from coming that early but she was not taking no for an answer..Today, thank God..zero complications I'm very cautious..but I have a happy healthy Strong minded little girl(2yrs).. loved your story it was sad but all is well..Thank God..be well.

Lorrie - posted on 05/04/2010

My heart breaks for you but partially because I was there. I was mortified when my daughter was early. I didn't get to hold her until 24 hours later and then it was only for a few minutes until she had to go back into the incubator. I think that the worst day was when I had to leave the hospital and leave her there. I cried all the way home.
She is doing great down. She is a year old. But it took me 6 months before I could look at a pictures of her in the incubator without crying. I was very depressed and tried to figure out what I had done wrong for this to happen to my baby. All I can say is don't want to ask for help. Your baby deserves to have to there mind body and soul.
Write back if you want to talk more.

Marcie - posted on 05/04/2010

I know how you feel, you pritty much told my whole story right there, only difference is I had to go back home after 2 nights and 3 days and he was in the nicu for 2-3 months. It sucked cause u just want to be there with your baby and protect him. They said after the 2nd week of life he had fluid in his lungs and it didn't look good. Then when that got better they said he had to have a blood transfusion cause there was a low count of blood cells but lucky for him they only had to do it once. I should have been happy that I had brought a new life into the world but I was mostly heart broken and felt like something was missing when i had to go home without him, it kinda felt like i had given him up for adoption but I could never imagen doing anything like that. Just thought i would let you know i totally understand.

Heather - posted on 04/07/2010

It is one day at a time for me. At first I would just look at them as babies that were normal but then reality sat in that they were not normal. Even now that my twins are almost 14, tht they are not normal. Nathanael is smart and good kid but is ADD and has social problems(immature by about three yrs.) Then you see Jeremiah who sruggles in school 7th grade but doing 3rd/4th grade work. He is smart in different ways and he learns differently but I needed to realize that. My faith in God helps me too. My boys are perfect in my eyes because God knew I could handle it. Don't get me wrong I have my moments that I wanted to ask "Why do they have to be s but o different and needy"

Tasha - posted on 04/05/2010

Wow Brandy that brought tears to my eyes.. that is amazing and SO wonderful he survived and is doing well and you held on as long as you can and didnt let any doctor talk you into anything.. I agree our babies are the heros they fight for their life and they are so strong... My husband always says how he is so proud of our son because he is a little fighter and he know that he will do wonderful when he grows up :-) and Jennie if you need any one to talk to about your child I am all ears.. I think its hard A LOT of people do not understand what us preemie moms have or had went through ... we are all very very strong mothers and god has chosen us because he knew that we would be strong for our babies and be a rock for them through it all! ♥

Brandy - posted on 04/04/2010

When I was told I could have preterm labor, I laughed. My first was a week and a day late. My water broke the next day at 21 weeks. I was told I should abort because he wouldn't live anyway. No dr would even try to help him unless he was 24 weeks. I couldn't believe I was going to be a statistic. I knew he was ok and that it was my body failing him. I was told I would go into labor within a day and deliver a still born. I stayed pregnant with no fluid. I was told I would get an infection, then they would take the baby and he wouldn't survive because you need fluid for lung development. I was in different ICU's for 3 months. I finally got to set a date for a csection but went into labor at 31 weeks. I was in denial and couldn't get ahold of my husband. During the surgery they said to not expect him to take his first breath, his lungs would be too immature. Even if he could get one gulp of air and make a noise, his lungs would be too immature to oxygenate his blood so don't get hopeful. My husband missed the surgery, I was all by myself, and I heard a faint wimper of a yelp from my son in the other room. He survived. I had a hard recovery, but was never sad that my son was in the NICU. He couldn't survive outside of it. He's home and almost a year. I missed my then 2 1/2 yr old so much then even though I got to see her for an hour a day most days. I was a mom who needed to be in two places at once. I had made a decision from the begining to see this all the way through. Good or bad. I missed my hubby too. I was stubborn, educated myself, advocated for my baby, an emotional wreck, and now a survivor. People say we mom's are heros, but I truly believe our baby's are the heros. I was just being the best mom I could. My son had to fight like freaking heck for a chance. I'm a different person after this. Not worse, just different. He's almost a year old. He's ours. He survived.

Jess - posted on 04/03/2010

I think you just have to take it one minute at a time. Even now 7 months on I still cry thinking about our time in special care. My family had prepared themselve's for my niece to be born early, which she was. I remember sitting in special care meeting her with my bump and just thinking how lucky we were that this wasn't going to be us and then just 7 weeks later it was... It was heart breaking and I wasn't prepared at all ! But on the days when I start thinking its all just too hard and I need a break, I remember how hard I had to fight just to be allowed to bring her home, and it makes it all so worth while !

Jennie - posted on 03/31/2010

Let me tell you girls I had my preemie 14 weeks early weighing 1 lb 14 oz. And my lil man is now 7 months old and his been in and out of the hospital all of his life. He ended up getting a trac because his airway was too small. I don't think I can get anyone to talk to me about this. I have posted message needing support but nothing. We have been through hell and back.

Tasha - posted on 03/30/2010

that is wonderful that your son is doing so great :-) I love hearing all these stories about babies doing so great just puts a smile on my face!! My son is the same way he weighs 18lbs at 5 months and i just love seeing him grow and start new milestones! he is starting to pull himself up to a sitting position now.. its crazy how fast that they grow and you would never believe he was a preemie now :-) and that is wonderful he is really healthy thats a fact!

Ruth - posted on 03/29/2010

i feel u..after he came out, the nurse just showed me his face and brought him to the nicu right away, was able to see him that night (after 5 hours).it was really hard for me to see my son being in the nicu for a month (w/ tubes, inside the incubator with the blue light, iv on his arm)...not being able to leave the hospital with him was heartbreaking...but after 3 1/2 weeks, we were able to take him home finally - what a joy! my husband and i visited him everyday at the nicu (feeding him and changing him). now he's 9 months old - and oh boy does he move a lot - all over the place.

Tasha - posted on 03/27/2010

Really.. that is weird to find some one on here that isnt that far from here lol... they asked us about going to the IU but my cousin had her little girl over there and said they didnt like the staff and alot of the nurses were rude so thats why we didnt go over there and we ended up at methodist... how is your little girl doing now... and thank you .. he is growing like a weed lol... I know they are just amzing little angels

Sierra - posted on 03/25/2010

AW! i know EXACTLY how you feel my daughter was in the RILEY NICU the same time your son was...MY daughter was there from september 6th to Oct. 30th and we moved over to special care in IU. I"m so glad He is doing well today! AND thank god for our little blessings.

Angela - posted on 03/25/2010

HI
My son was born in June 2008 via emergency c-section due to severe neurological pre-eclampsia and liver, kidney and lung failure (I had this due to the PE). He was just 24 weeks and 4 days gestation 669 grams (1Lbs 5oz).

I was an emotional and physical wreck. I spend 4 days in ICU myself and another 2 weeks up on the ward. The day I went home from hospital I cried and cried and cried when we got home and I looked into his room.

The first 8 months were so hard, and I couldn't look at other pregnant woman. I locked myself and Toby away from the world as I was so scared he would get sick due to his chronic lung disease. I soon learnt that I needed to lead as normal a life as possible and to stop worrying about all the delays etc that could happen. Yes we are careful in that we have not let anyone else kiss him until recently (he is 21 months old now). This was to help prevent diseases being spread to him (he has viral asthma too). We also have given him the swine flu vacc and are about to get him the normal flu vacc. I stay at home with him and will until his immune system improves and to help his development.

The best things I have done to cope with everything is:
1. join premmie forums
2. formed close relationships with other premmie Mums
3. Am founding member and president of a parents fundraising committee and parent support committee for the hospital Toby was born at.

We have only just started number 3 on the list, and it is amazing how this has helped me heal, being able to give back to the hospital and help parents currently in the NICU has been amazing. He also did a photo book of Toby's journey with exerts from the journal he kept while in the NICU and given a few copies of this to the hospital. Being told how this has helped other parents has been amazing, it not only showed his journey in the NICU but also showed how well he is doing now. Knowing I am helping other parents and families is just so amazing and has helped me to heal.

ANgela

Tasha - posted on 03/21/2010

Kristin thank you so much that means a lot to me and it is wonderful to hear that your daughter is doing wonderful and is in great health :-) ... and Kimberly I know what you mean about the NICU staff they were all so wonderful in making you feel better .. and a lot of the social workers they ad assigned to a lot of the families were wonderful .. My son had a set back at one time and luckly my husband was able to be there with me because i took it very hard and was so upset and the nurses and social worker were there for us and it was wonderful support... I love hearing all these success stories of our little preemies its just amazing to hear how well they all are doing!!

Kristin - posted on 03/20/2010

Oh Tasha I know those feelings. My daughter Cierra was born at 26 weeks, 1 lb. 12 oz. They told me I was not in labor and sent me home and at 3 am I woke up in extreme pain. When I got to the hosp. they again told me I was not in labor, until the sono tech saw her in the birth canal. My daughter was born shortly after, with no Dr. there and no one to catch her when she came out. (She landed on the bed, thank god I wasn't at the edge of the bed in stirrups yet) They whisked her away not to be seen for 1/2 a day. The NICU Dr. gave us a speech that was so unbelievable to hear, even though we already knew everything he was saying. "If she survives she might be mentally retarded, If she survives she might be blind, If she survives........" and so on. And even though Cierra was born in a great hosp. and they didn't have to transport her I know the feeling of being alone. My husband and I lived in Fl and the rest of my family and his live in NY and PA. You had some of your family able to be with you while your husb. couldn't be and that is such a blessing, but at the same time I don't know how I could have handled not being able to have my husb. hold me each night. I truely believe that God only gives us what we can handle. Myself I have had 3 open heart surgeries on top of countles other not as dramatic ones and being in the hosp. for months at a time and recovering from my illnesses can never even compare to the emotional rollercoaster it is having a "micro-preemie"
I am now pregnant with my 2nd, a boy! I am 21 weeks and scared to death. I have been put on bedrest already due to contractions and my cervix opening and closing. I am praying to God that I can go to term.
My daughter is now 3 1/2 and other than a little small she is in perfect health. If there is anything I can do to help you on your still long journey please do not hesitate to contact me.

Kimberley - posted on 03/20/2010

My daughter was 23 gestation weeks weighed 1lb 3 1/2 ozs had the same concerns about her lungs I beleive you are right about others not understanding what it is like I felt the same way when she was born You don't get that time of holding after the birth and then to have that little baby , with all those tubes and such Oh my!! They flew her by helicopter to ChildernsHospital with out me But my faith in God helped me get through it I knew He would take care of her Then going to the Childern's hospital OMG!! that was soooo amazing!! The NICU nurses and doctors !! I knew she was in very good hands. It's so hard to believe that all happened 16 yrs ago!! Now you wouldn't even guess she had gone through all that!! She will be 16 next month!! My little Miricle Child!!!!

Susan - posted on 03/19/2010

my daughter was born at 24 weeks weighing 776 grams or 1 lb 11 oz. I was in the hospital for 36 hours trying to stop the contractions but it didn't work. I was allowed to touch her and I did hear her cry. Her Apgars were just 5 at one minute and 7 at 5 minutes and she was put on a ventilator right away. My placenta did not want to come out and I was taken away to do a D&C, but my mother went with the baby to the NICU. I also was not allowed to hold her, but could touch her in the isolette. I held her for the first time at 28 days, though she was still on the ventilator. She spent 5 weeks on the ventilator, 1 week on C-PAP, and then on oxygen for another four months. Her lungs blew out from the ventilator when she was 10 days old and we had to have a total of 3 chest tubes inserted to keep the pressure from the air leaking into her chest cavity from affecting her heart. We put her on Do Not Rescusitate orders for three weeks until she recovered from that pneumothorax. She literally did not gain weight until she was over 6 weeks old. She came home after 82 days, at 36 weeks gestation, weighing 4 lbs and 5 oz. I treated my anxiety over all of this by reading articles on care of preemie babies and learning as much as I could about the best methods to care for her.
My daugther will be 15 in May and has moderate disabilites - Nonverbal Learning Disability, Sensory Processing Disorder and Anxiety Disorder. She is extremely gifted as well and is doing very well at school with the appropriate supports on her IEP. This week she is performing in her school production of Rent - we are enormously proud of her achievements.

Nadine - posted on 03/19/2010

My son is now 3 and reading all these posts brought me to tears remembering those first few months of his life. I live in Canada and was hospitalized a week before my water broke at 23w2d. There was a bed shortage here at the time and the only option was to be transferred to the states, away from family and friends. My son was born via emergency c-section 4 days later weighing 1lb 4oz. I had lost a daughter just 14 months earlier at 19w and was fearing the worst again. The first couple of days I could hardly bring myself to go see my son because I was sure we were going to lose him. The NICU staff were great, involving us in as much of his care as they could, changing his diaper, sponge bathing him in the isolette, etc. We were finally able to hold him briefly when he was 18 days old and that was when the bond finally happened! I stayed in a hotel a block from the hospital and spent every possible moment in the hospital. One of my best memories was when they were trying him on nasal cannula, he would do great while I was holding him so nurses said he could stay with the cannula as long as I held him... we cuddled for 5 hours until my bladder couldn't take it any more! It was amazing because before that holding usually lasted 20 min or so. Family would visit us whenever they could but for the most part it was me & my son. The nurses at the hospital were an amazing support! We were transferred to another hospital after 2 months and it was heartbreaking because I was so attached to the staff but I found the same support at the new hospital and from other moms staying at the Ronald MacDonald house. I have been extremely protective since we came home, to this day me & my husband have only been out just the 2 of us once. I have been very lucky to be able to work casually when my husband is home with our son, I think if we had to put him in daycare I may have had a mental breakdown! I have great respect for NICU and preemie moms, I know it has been life's greatest challenge for me but also came with the biggest reward! It has been quite a ride!

Sheryl - posted on 03/18/2010

I was like every one else here. I had an emergency c section at 30 weeks gestation and it happened so fast that first night that I really didn't understand the seriousness of it all. I remember being prepped in surgery and praying to God that I understood if it was my time to go but PLEASE save my baby. I didn't get to see him for 3 days and it was 5 days before I held him. But, I was able to start the Kangaroo care that day and did it everyday while he was in the hospital (six weeks) and continued it once we got home. He is now 8 months old and our bond is extremely tight. I cried every day but the closer we got to bringing him home, the happier my tears were. Those were some of the most fearful days of my life. My husband and I tried for years to have a baby so when we came early, I decided God gave me my gift sooner than most moms get! I still struggle with emotions over that time though. Very difficult, yet extremely rewarding!

Tasha - posted on 03/18/2010

I agree with both of you guys.. I honestly think that God chooses the preemie mothers perfectly.. he knows that they have to be strong and be a rock for your child.. it is hard but you know that you will get through it... It just makes that time with your baby even more special... and when I see my son laugh when i talk to him and smile really big because mommy is playing with him makes me feel so great... Even when he is upset or doesnt feel well... how he only wants his mommy that is ONE thing I will love for the rest of my life.. that he still needs his mommy :-) I love my little man and am SO blessed to have such a precious child! I think all of us are blessed with perfect little angels!

Anna - posted on 03/18/2010

it is hard , my son was 12weeks premmie, weighing 1063grams, i had to leave hospital before i could hold him, i cried all the way home. he is now a beautiful healthy 2yr old, still small only 9.5kgs. I am very protective of him, still today if any one is sick they cannot come near us. The one time he did get sick he was rushed to hospital with 40 temps and had fits. my parents have only looked after him for 2 nights in his whole life. I am now 23weeks pregnant and they have me on progestone to hold this one in for as long as possible.. People say it's hard tp bond with a premmie, but our bond is soo strong. I just take every day as it is and be feel very lucky to have him in out lives..

Tammy - posted on 03/18/2010

It all happened so fast I didn't have any time to think about it to be honest. I had a placenta abruption at 32 weeks, was rushed to the ER and from there an emergency C-section, the whole time I was scared for my son's life. They told me that he may not be able to cry when he comes out b/c his lungs were not mature enough, and i remember crying before i went back and when he came out, he was crying and I was so relieved just to hear him cry. The whole ordeal was very draining for me to say the least. Constant trips back and forth to the NICU. I was an emotional wreck. It has been one of the hardest things i have ever dealt with, but I'm not complaining, I have my little angel with me now. He is alive and healthy. He has developmental delays but other than that, a normal boy. God has really blessed me.

Tasha - posted on 03/17/2010

wow that is crazy .. that is a lot harder than not getting to see my son for almost a whole day .. I feel your pain there... i only got to touch his hand through the transport thing they had him in.. but thats good that your cut healed up well ... but that really was one of the hardest things I think any one would ever have to go through... A lot of moms dont understand what moms with preemies go through and the pain that they have to deal with ... when you carry your baby for so long.. and then surprise your not even ready and they are wanting to come out into the world.. and then you dont get to bond with them or hold them or kiss them or talk to them.... i know when they brought my son to me to see him before he left... i just broke down crying because it killed me seeing him that way.. i wanted to take it all away from him and didnt understand why he had to go through all of this!

Bo Lynn - posted on 03/17/2010

Practically word for word with my experience though after my C-Section, the cut was infected and I stayed in the original hospital for a week and a half after his birth. I only left that soon because I had the option to either stay another week and let the hospital continue care of my incision, or be discharged that day and have the wound left open to be cleaned and repacked with gauze twice a day by a home health care nurse. I chose the latter just so I could get out of there and drive 40 minutes that day (against dr.'s orders) to see my baby that I only had a picture and a memory of touching his foot.

My daughter was born the same way 3 years later though this surgery didnt leave me infected and I got to see her within 4 days...

I totally know where you were... I never felt so helpless...

Tasha - posted on 03/17/2010

Yeah I agree.. No one really understands how different and what kind of emotional wreck it is... and you know you have a special bond with your child.. I am very protective over my son.. I hate leaving him with my mom even for a few hours when my husband and I both have to work... I feel horrible for leaving him with some one else.. only because.. I didnt get to take care of him on my own for 2 months with out having nurses telling me to do this and giving him baths and feeding him when I was not there trhough the night... its just crazy!

Naomi - posted on 03/17/2010

u are not alone even tho u feel u are because no1 understands wat u went through.havin a premie baby is totally different from havin a baby full term.my son was born 9weeks early and was taken away from me.i didnt even get to c him for 24hours and its very hard to struggle that other people are lookin after ur baby wen it should be u.my son is now 10months old and even now people do not understand the emotion and wat we went through.im just very thankful my son is happy and healthy now

SAMMANTHA - posted on 03/17/2010

i kno how it feels to have a premie baby, my son was born 3 mnths early weighin at 1 lb 2 oz it was major iether 50/50 for him and me. email me and we can talk