New here? Say Hello! March 2008

In November 2005 i gave birth to identical boy triplets by c-section. After 4 days on life support we had decided to take them off. they were born at 26 wks and 6 days. all three of my babies had swelling and bleeding in the brain. holes in their hearts, seizures, a machine was breathing for them. 1 of my triplets even had open heart surgery. the other two were suppose to have the same surgery. then the doctor told us that they were not going to recover from the bleeding and swelling in their brain. so we decided to end their pain and take them off their life support. i still remember holding my babies while their taking their last breaths. with one eye half way open looking at me. till this day i still remember that.

My techniques for calming down...I'd just try to focus on something else, mainly.
After a while, I learned to tell the differences between my moods - whether or not it would be a long or short crying-spell.
Like I said...my son HATED to see me cry and would either get REALLY mad at me or start crying himself - which in turn made me feel worse.
I'd go for walks...I like to go for walks...and occassionally my son or a friend would go with. It didn't matter who was with me, just as long as I wasn't alone.
I think my Dad was one of my main "lifelines". I can call him and just talking to someone ALWAYS calms me down (like last night ). I'd always call him if I'd been crying for more than 15 - 20 minutes.

My Husbands Coping:
He went through the coping with me the remainder of the 2 weeks we had together. After which, he worried ALOT about me as I worried ALOT about him - I had family and friends here, he didn't where he was...but his commanding officers were VERY understanding and told him to take a few days off. He just told them that he'd rather work...it woud be easier that way - keeping himself busy. His little stint overseas was 4 months...so when he came home, we kinda picked up where we left off - but he would ALWAYS breakdown after he'd been drinking (kind of a buzz kill ). I had to talk to him about his breakdowns a few times...'cause if we'd argue about something, he'd bring our daughter into it somehow...when she'd have nothing to do with it. After a while...and after reading the "kicker" book, I told him of some of the things written in the "Dad" section of the book...and he felt a little more at ease with the feelings he had. Also, we've always been open about talking about her which helps both of us...she'll always be part of the family and we always include her in family get-together prayers - which also helps, knowing the family thinks about her as much as we do.

WOOO...got a little winded there...
Feel free to ask me all you want - I'm happy to help.

Welcome other Share Newcomers!!
Thank you for sharing your stories and I hope you find comfort and friendship here at Share - I have!

I can't imagine how difficult that must have been...but at least you were able to spend those last moments together - how special is that!!! I'm sure it made you feel more at peace - knowing that they were at peace...no more pain.
Kudos to you for being so strong; that's a very difficult position to be in.

Always a part of your family - always your babies!
I hope you find comfort in knowing that LOVE was all they knew!
Erin

I would like to take this opportunity and welcome all our new SHARE members. It's wonderful to have you here.
Our hope is that while you are visiting SHARE you receive the comfort and support that so many others have found here.
I know personally, SHARE has given me just that. It's an amazing community full of amazing people that are here for each and every one.
Please take a moment and share your story with us in the "share your story" section:

http://www.shareyourstory.org/webx/Share%20Home/Share%20Your%20Story/

We look forward to getting to know you and your family.
All my Best,
Colleen

Welcome to Share, I am so sorry for your losses.

We lost two of our triplet boys in the NICU also, and like you, we had to make "the choice" for one of them. It was heart wrenching. A doctor once told me that letting a child go is one of the most loving things a parent can do.

Shonda

For me this is very recent, I gave birth to my son on March 4th; he was not quite 20 weeks. I'll post my story when I have a chance. But briefly,

By the time I had gotten to the hospital I had "hourglass membranes" meaning the placenta had descended and had pushed out of the cervix (which as best as could be determined had opened on its own). There was only a slight chance of being able to push the placenta back in and maintain the pregnancy and we had no way of knowing for how long and what quality of life the baby would have.

We named our son Joshua Daniel and he was with us for 68 minutes and will be forever in our hearts.

Everyone tells me that it's not my fault, but in the back of my mind I wish I had been that annoying patient who called at every little thing because there were signs, but even when I mentioned them to my OB at my visit the week prior to this happening, it was thought to just be "normal," until it was too late.

The hospital actually gave me one of the books previously mentioned and they have a wonderful bereavement center for pregnancy loss that has been very helpful. We also realized what wonderful friends and family we have. We've already discussed trying again (and know I will be followed by a peri next time and more than likely undergo a cerclage) and we can't wait to get the green light!

I am sorry to hear about your recent loss. I know what you are going through. I gave birth on March 2nd to Matthew and he was only with us for a few hours before the angels took him away. If you need to talk I am here.

Hello everyone

My daughter was born 6 wks early and stayed at the hospital a little over a month before she came home. She is now 3 and I am still learning about some of the growth and development challenges that she is facing. Although, she seems like a normal child; loud noises are too much for her and she does not take change very well. I look forward to meeting new people and learning being a part of this community.

I just joined today! My daughter was born 14 weeks premature she is now four and a half years old she still has a ways to go as far as development I look forward to talking with you all and being apart of this community.

Just some reassurance -
My son is 5 yrs old and was not a preemie (10 days past due date) and he HATES loud noises and also has problems dealing with change...it's perfectly normal for some kids. We recently attended a family gathering where there was a DJ - he went up to the DJ and asked him to turn the music off because it was too loud (he had also cried/whined about it for a little while)...lol Today we were at McD's and there were some girls being loud - he paused where he was and covered his ears 'til they stopped.

Hi Jodi-Lynn,
I am so very sorry for your loss. We have something in common... I just had our second daughter on Feb 18th and I was 20weeks along. We had to deliver our baby girl because I had placenta abruption. The placenta just pulled away and it caused her to not have any fluid around her. After they induced me, I was in labor for 36 hours and then we delivered her. She was 10 1/2 ounces... she was already gone.
My heart is breaking for you because I KNOW how you are feeling. My first daughter was born 4 weeks early due to pre-term labor. I was in and out of the hospital. I have an incompetent cervix and have to have a cerclage for my pregnancies.
I think it is wonderful that you came to SHARE... I don't know too much about it yet, but it is a nice place to come where people are so kind and want to hear your story and be there for you. It has really been a comfort to me... I hope you will find it comforting too.
You can read my short story if you are interested-
My thoughts and heart go out to you....
Denise

My wife and I are the proud parents of twins. They were born Feb 27 on exactly the 26th week to the day. We know because my wife and I had to go through infertility just to get pregnant.

My wife started having contractions and I was the first to suggest that they might be contractions. She was saying they felt like cramps. After asking several women about what contractions were like, my wife was re-assured that she wasn't having contractions. This all started on a Friday. By Monday she was feeling worse so she made an appointment with her OB. The OB took one look and told us to go straight to the hospital and do not stop. Talk about scary. The OB said that she was dilated to 3-4 and had a membrane bulging out. My wife lasted 36 hours after being admitted. She was amazing. All the nurses and staff were in awe of how hard she fought to keep her babies in so the steroids could have the greatest effect. By the time they took her to do the C-section, she was having 5 minute long contractions and was dilated to 7. She gave birth to our little precious angels. A boy and a girl, Austen and Emilee.

Austen was first and was the bigger of the two. He weighed 2lbs 2oz. He did very well right away. Emilee didn't want to come out but she eventually did. She weighed 1lb 12.5oz. She is a dainty little thing. She had some initial issues with breathing but started doing very well quickly.

Right away, you could see that something was up with Austen. He was pale compared to Emilee and he his head was considerably bigger. After a blood test, the staff decided that he was losing blood somewhere internally and they did a head ultrasound. They found that he had a Grade 4 IVH on his right side and a Grade 2 on his left side. I'm struggling just writing this. The doctors don't spare you on how terrible it might be. After 1 week they did a spinal tap to relieve some of the pressure. They pulled 27cc of fluid from his little head. He looked so much better. They contacted the closest hospital that has a neurosurgeon that will operate on premature babies to get Austen a VAD (Ventricular Access Device). This would allow them to pull the fluid off without doing a spinal tap. It took a few days but they were able to get him moved to the other hospital and scheduled for surgery. He had the VAD inserted without complication and it works great. He is now back at our local hospital with his sister.

Emilee has only had a PDA that was treated and is now gone. She has been trying her best to catch up to her brothers weight but she is still behind him.

They are both so wonderful and full of life. Its so hard to know that it is completely out of our control. I like to believe that Austen was had something wrong and that is what sent my wife into labor. The doctors think it may have been an infection. I still think it was his way of saying, "I need help."

I look forward to watching them grow and I hope and pray for them to be healthy. No matter what, my wife and I will love them.

Oh yeah, my wife and I are both twins

Hello everyone. I just found this site while browsing for information and support on preemies and the NICU experience. I just gave birth via emergency c-section on March 12th, 10 weeks early, and my baby is currently a patient in the NICU. She is healthy for the most part, but very tiny. This has been the most trying couple of weeks of my life (the week of hospitalization before she was born and the week with her in the NICU since). I'm just looking for other people who talk to who have been through this and know where I'm coming from.

Welcome to Share everyone!! I am so glad that you were able to find or heard about this site.

To those who are waiting for days on end for the news of a day when your sweet one will come home, be strong. It is so hard to hurry up and wait, but your day will come too.

To those who have lost a child...I have been there and I know that the hurt seems to be more than you can handle, but remember that you're only required to take one breath at a time.

Please know that we're here for any of you who need advice or a listening ear. Please keep us posted on your little ones or your daily life.
Tracy

I delivered my baby 13 weeks early, she weighed 1 pound 11 ounces. She spent two months in the hospital, and the third month in and out of the hospital. Today, she is a healthy 21 month old. You have a very beautiful baby. The smaller they are, the more of a fighter, I've found. We'll be praying for you and yours. Heather.

Hi everyone! I just found this site. My daughter was born at 26 weeks. She was 1lb 9oz & 12 3/4in long. Everything about her was unplaned. I was indirectly told I would never have a baby so I never worried about getting pregant. Then I started havein pain & the Dr. did a test & sure enought I was pregnant. At 22 weeks I had to have a cerclos done. Then I had to have the steroids to help develope her lungs & about 3wks later I was in the hospital for a weeks & she desided she wanted to come out & play. I was scared to death. I had no idea what was going to happen if she was going to make it or not. Now she is 5 month old & weights 7lb 13oz. She is my life & I thank god every day for her.

Destinee07

Welcome to Share and congratulations on your daughter. I'm so glad you found Share and I hope to hear more about your daughter.

She seems to be progressing well. Our little ones are truly miracles.

Take care,

Kelly

Hi everyone! My husband and I tried for 8 months to get pregnant so when we finally did we were ecstatic!! My son was born at 31 weeks and 2 days. I had a perfect pregnancy up until that point. I had some pretty painful BH for several weeks and the day before I went into labor wasn't any different...but I could tell something was going on that night. I woke up at 4am the next morning and realized that they were pretty consistent and very painful, so I started keeping track. They were coming every 5 min. and they were lasting about 1min to 1 and a half min. Called the doctor...obviously went to the hospital. They monitored me, checked me and I was dilated to a 3 almost a 4. They started me on Mag and Terb and I was on bed rest from that point. Not even allowed to get up to go to the bathroom...had to go in a bed pan....my husband needless to say is a saint!! 2 days later I had probably the worst gasteral intestanal pains ever. That evening they figured out I was in labor, checked me and I was now almost to a 5 with a bulging bag. Called the doctor and decided on an emergency c-section. Lincoln was born 4lbs 5ozs and 17 3/4 inches long. They took my temperature after the surgery and I had a fever which was a sign of an infection. On top of everything, I couldn't go down to the NICU to see him for 24 hours due to having the fever. Lincoln was perfect though! He was only on the vent for 6 hours and then breathing room air. He was perfectly healthy just needed to grow. The nurses were great but when I was able to start nursing it was hard to get all the nurses on the same page. I knew the only way for my baby to come home was for him to maintain his own temperature, which they hadn't tried to do, and for him to be able to nipple all of his feedings. It took me going to the hospital every 3 hours to feed him myself to make sure he was eating on time. After doing that for 24 hours I was able to take him home. He was only in NICU for 23 days! He is right where he is supposed to be developmentaly, he's healthy and happy!
5 months later we found out I was pregnant again, this time with a girl! Little earlier than we had planned but there is a reason for everything. I am now 31 weeks and been on bedrest for 3 weeks. I am just hoping to not have to go through the emotional hardships of having a baby in the NICU again. So far so good though.

Welcome to Share!! I'm so glad that you have joined us. Please know that we're here any time you'd like to talk and we love to offer out take on things even though it's not scientifically proven!!

Tracy

I am new to the March of Dimes Community. I am the mother of a preemie. My daughter was born at 27 weeks. She was a fighter from day one. She weighed in a 1lb 13 oz. Today she is 11 months old and 18lbs of joy. She is a true blessing. She is on track with her development. I am looking forward to watching her grow up.

Hello everyone. I am really excited to find this website. My daughter Ayah (Iyah) was born at 36 weeks with gastroschisis. She is a beautiful little girl (of course) with a very cute personality. Initially her prognosis was great and the surgeon was able to get the bowel back in immediately. We thought she would be home soon after but developed an infection and had to have another surgery on her 1 month birthday. That surgery did not go well and they had give her a colostomy bag. She was eating well via the bottle and wanted to eat but had to stop after she was out-putting too much. She did not eat for 4 weeks and had another surgery on her 3 month birthday. She now has no colostomy bag but it seems that she has forgotten how to eat. She has made quite a few small bowel movements and it seems that some of the food is "going through" but she had a lot of residuals/aspirates I think because her stomach is in shock.
If she does end up needing a g-tube or j-tube does anyone have any advice on feeding therapy or any other advice?

Although I've been meaning to join the Share community, I've put it off for many of reasons with the main one being time. I'm the mom of twin girls born at 30 weeks (conceived via IVF). Today they are healthy and happy with few setbacks associated with their premature birth. My daughter Kaley has a scar on her stomach that is the length of her belly due to surgery for NEC.

I'm currently the Co-Chair of the Family Teams Committee in Phoenix, AZ. I've been volunteering with the MOD for about 2 years. My girls are now 3 1/2 years old. I plan on continuing to volunteer and raise money for the MOD for the rest of my lifetime. Hopefully my girls will follow suit.

I've started a blog on Share and I also have another blog at http://www.twinpeas.com/wordpress. The Twin Peas blog is about infertility, prematurity and personal growth.

My hope is to offer support to other couples in the Share community who've experienced the premature birth of their child after infertility or those who have a baby with NEC. It's a scary disease for preemies and one that sometimes has life long consequences.

Kelly

Hello everyone. I am new to this website, and to the March of Dimes. I had my son in December 2007. He was born at 35 weeks and 3 days. He weighed 5lbs. 13ozs. He spent 12 days in the special care unit. I had many complications during my pregnancy, and knew he was going to come early. Thankfully, I had already had the shots to mature his lungs which I think helped him immensly. He is now approaching 4 months and he is THRIVING. He got weighed Tuesday and was 14lbs. 8 oz! I am so happy he is doing well and cannot wait to watch him grow. Thanks for reading my story, and I hope to make some friends here to talk about our experiences.
-Vicki

Hi everyone! My name is Patricia Eloy and I am the mother of a 27 weeker. Anna was premature due to an undiagnosed severe preeclampsia. I almost died. My blood preassure got to 240 over 140 and the doctors were unable to bring it down with medication. I was aluccinating and on the verge of slipping into a coma or worse. After an emergency c-section, Anna was born. She weighed 1 pound 4 ounces (it eventually dropped to 1 pound 2 ounces) and she was 12,5 inches long. She was one of the tiniest babies ever to enter the hospital's NICU. She was never sick, though. Despite a minor infection, she was there mostly to gain weight and get stronger. After 82 very long days, she came home on a heart and apnea monitor. One month after that, she was off the monitor. Now she is a healthy 7 month old baby and my husband and I are starting to talk about having another child. We are afraid of (us and the new baby) going through another NICU experience, but we have faith that things will be ok second time around.

Hi to everyone in the preemie community. My monster baby decided that at 28 1/2 weeks he wanted to cause a little havic and break our water one night after work. Ethan came into this lovely world after being on bedrest in L&D for 1 1/2 wks until the water level was too low and the doctors decided it was time. He came out a screaming baby boy( i don't know if he's stopped yet!) 4lbs 0oz and 16 inches long. For all of you that have been on the parent side, my thoughts are with you, from being on the healthcare side and the parent side, both are not easy. My monster is now going to turn one and is very head strong, I have changed jobs since I had him, it was too hard to handle others once my own was there, I am home more with him and we have a blast! His big brothers, how can I put this, enjoy him as best they can, they are 15years and 10years old. Take care and good luck to all!

I have recently got back into the swing of things in keeping updated email posts, web sites & information. I had Dylan 3 years ago at 27 weeks. He weighed 2lbs 13oz & was 15 inches long. He spent 85 days in the NICU & had 2 surgeries. He is doing well now, he is behind to about a 5 - 10 month level depending on the characteristic. He is blind & has to shunts to help with the fluid on his brain. He just stared school in March & is loving it. We have already seen a huge jump in is development. We are pregnant again but aside from losing my hearing..yes, Mom can not hear...all is going well. We have now passed Dylan's weight & the 27 weeks... I can not agree more that these children are BLESSINGS & I thank God everyday for getting to be a part of Dylan's life.

My husband & I are huge supporters of the March of Dimes & hope to catch up with some new families this year in The Woodlands, TX.

On September 27 2006 my first grandchildren were born. Identical twin girls. Madyson arrived first at 8:02pm weighing2ib.3oz then came Makensey at 8:05pm weighing2lb. 7oz.They were so small you could hold them in the palm of your hand,their skin transparent,I had no idea they made diapers so small!It was so sad to see them in the incubator with all the i.v.'s,the feeding tube,the oxygen,not being able to hold them or touch them was so hard .I just wanted to cuddle them and hold them and let them know how very much they were loved but that was not possible.I seen them every day and told them how much they were loved but it just wasn't the same.I prayed for god to let us keep them and let them grow up to be healthy young ladies with families of their own one day, but still I feared the worst.God answered my prayers and the girls are now 18 months old and doing great, they are walking and getting into everything.I thank god everyday for letting us keep them , and for the wonderful staff in the NICU at T.C. Thompson Hospital,and I am thankful for organizations like THE MARCH OF DIMES that help babies have a chance to live.I wish everyone would donate to this outstanding organization whether it be $1.00 or $1000.00 it all adds up to helping a child live.

Hi Patricia,
Welcome to Share!!! I also had severe, undetected pre-eclampsia with my first pregnancy (I also had HELLP syndrome). I know how you feel about being afraid to go through the whole experience again.

I just wanted to share my experience with you - I had Alex in Novemeber 2004 at 28 weeks. He was 1 pound 15 ounces and was 14 1/2 inches long. In 2007 I had Sophia at 36 weeks - I was *very* closely monitored through the pregnancy and I had no signs of pre-e or HELLP, although I did have slight pregnancy induced hypertension, which caused them to deliver her at 36 weeks. BUT she was 6 pounds 1 ounce and was healthy and strong enough to come home from the hospital *with me*!!

Good luck with whatever you decide to do, and feel free to email me if you want to chat
Donna

Hello everyone. My name is Nicole and I'm so glad to find people who understand what I've been through, and am currently going through. Funny things is, I've been raising funds for MOD for 10 years and didn't know about this online community.
   I had a lot of problems with my pregnancy. I ended up in ICU at 18 weeks with very high bp. I was there for 9 days and released to bed rest for the duration of my pregnancy. The meds they gave me to control my bp also had adverse effects on my son, Robert's, growth. I had an emergency c-section on Nov 30th (26 weeks gestation)- he weighed 14 oz. His lungs and other organs were underdeveloped. He fought for four days and passed away on dec 3, 2007.
   Since then I've felt like I'm dreaming and hope to wake up with my son sleeping next to me. Reality is I won't. People don't know what to say, and nine times out of ten try to relate, but can't. They offer by saying "if you ever need to talk..." but what they really should do is add a disclaimer stating "I'll listen the first few times, but after that I'm done. And please don't call me at ungodly hours of the morning because you had a dream about your son that's so real to you. I have to work in the morning." Or my personal favorite "You'll have another" like that will ever replace my son.
   It's just nice to know that my feeling and emotions aren't crazy and I have someplace to turn for support.
Thanks.

Nicole, welcome to Share. I am so very sorry for your loss.

Had one of my friends suffered the loss of a child before we did, I'm not sure I would have known what to say either. After losing two of our triplets in the NICU, we realized that people want to say something...anything....to tel you know they are thinking of you. A simple "I'm so sorry" would have been enough. Like you, I didn't need to hear (at the time) stories of other losses of aunts, uncles, grandparents.........I needed to talk with someone who'd lost a child......for only they could truly relate.

I think you'll find some amazing women (and a few men) on Share that have experienced loss....and will listen. Welcome.

Shonda