NICU AND BEYOND!!! Our new support forum!

As you can see, we have been renamed. This forum is now not only for our precious NICU babies, it is now also about the reality of raising premature babies. Alot of us have had a hard time in our experiences with having premature babies. There are many of our children with long lasting effects and some without. This forum is now for all of us. Please feel free to discuss anything having to do with your premature babies here. We will be a support forum for moms with babies in the NICU through the upcoming years of dealing with adjusted ages.

Please share your experiences with us. We will all be here for each other.

 

Kristi I am looking forward to sharing in the newly named forum.

Jacob and Nathan were born at 29 weeks on 4th of July 2002 (I can't believe they are almost four!!!!!!!!!!!!) They spent the first 8 weeks of their life in the NICU. We have dealt with several issues related to prematurity.

Nathan suffered a grade IV brain hemorrhage and as a result has left hemi CP. He gets PT and OT 2x a week, but is doing awesome.

Boys decided mommy can't type anymore today so I will have to share more when I have more time or when a question I feel I can be helpful with arise's.

 

Hi there, wanted to add my thoughts to those of Michele. Great idea. We are dealing with issues caused by prematurity complicated by TTTS. My sig says most of it so I won't repeat it here.

Sharon

 

Hey! What a great idea! There are so many things that preemie moms have to deal with that other moms can't understand. I think it's a wonderful idea!

I am a SAHM to Annabelle & Olivia born at 27 weeks! Annabelle has a VP shunt, with no revisions yet! She is doing great, walking and talking at 15 months! Olivia, who had PDA surgery and was vented for 30 days, has no problems, and is also a walking talking 15 month old!

I also have a DS who is 24 months who is my "wild card", making everyday more interesting than the next!

I look forward to getting to know everyone here, and I feel in good company with all the expriences everyone has had!

Andrea

 

Thanks for all your comments and stories. Here is a summary of mine:

My girls were born at 26 weeks gestation. They are now almost a year old. Emily has a VP shunt and muscle tightness in her legs and feet that we are getting therapy for. Audrey was in the NICU for almost 5 months. She is getting better about holding her head up while on her belly. She suffered mild hearing loss in her left and moderate in her right. She is also has to wear glasses. She has some feeding issues that we hopefully can get fixed. She is also still on oxygen at night and hopefully after her sleep study in July we can get rid of that also.

I am looking forward to getting to know each and every one of you and sharing our stories.

 

This is a wonderful idea!

My girls were born at 30 weeks but, according to the docs and nurses, acted considerably younger. They were both on the vent, CPAP, and cannula. Both had PDAs but didn't require surgery. Nicki had a grade 1 brain bleed which we only found out after the fact. Emma had stage 0, zone 3 ROP which resolved without treatment. We also dealt with reflux and anemia. They were in the NICU for 14 weeks and 16 weeks, so while we didn't have a lot of the major problems that many preemies have, we did have a very long NICU stay because of feeding and breathing issues. Emma came home without support (but still a reluctant feeder), but Nicki came home with O2, monitors, and an NG tube. We were pleased when she was able to get off the NG tube in less than a month and the O2 by Thanksgiving (she came home in early October). We have been very fortunate in that the girls have not had many lingering problems related to their prematurity, the main one being their weight. Nicki still has yet to hit 20 pounds and they will be 2 in June. We were also blessed to have the preemie clinic at our hospital, which we have been using as our pediatrician since they came home. We've had access to nutritionists and occupational therapists for evaluations through every step of their development, and many of the people they see in the clinic have known them since they were in the NICU.

While the girls don't show many long-term effects from their prematurity, I sure do. I went through a lot of emotional ups and downs regarding their birth and hospital stay, and it took me almost a year to move past some of those emotional roadblocks. Moms with only full-term children can't always understand, so it's great to have a forum with other parents who have had similar experiences. I'm looking forward to getting to know parents of preemie toddlers and children better.

 

Thank you all for this new forum
I have emailed this forum to say how much your support has ment for me. I have had much emotional trama because of guilt. I had thought I should have done more somehow to keep the twins for a longer time. now with your support and with my fantastic husband great strength both emotional and all else im finally seeing the light. our nicu stay might be a long one, but I draw great hope as each twin has improved greatly, each day it really is a rollercoaster ride both phyically and emotionally, thanks for a place to vent fears and frustrations. Each mother out there has helped give me the needed support that has improved our journey. You have given me directions when before I felt lost now I can go the the nicu know the lingo have strenght to talk to the doctors and my boys are doing very well. Both are off the ventilator one on it much longer than the other. Funny now the smallest boy in wieght and size has caught up and past the other even though he has had more breathing trouble. Should we worry about ashma. also both boys still have alarms about breathing that slows stops and heart rate increases or drops. dr are monitoring situation now they have been moved to a third room im concerned only now instead of two nurses and 4 babies they are in a room two or three nurses and 8 babies will he get same level of care. Worried he will set back if nurses are too busy with others. I know the nurses do all they can but I still worry thanks this forum it is a life saver maria

 

HELLO I AM NEW TO THE SITE. JUST WANTED TO TALK TO SOME PARENTS THAT HAVE BEEN THREW THE SAME THINGS I HAVE, MY TWINS WERE BORN ON 5/2/2006 @ 31 WKS. THEY WEIGHED 3.5 AND 3.6.BOTH WENT ON A VENTLATOR FOR A DAY THEN WERE TAKEN OFF. BOTH BEING TUBE FED B/C THEY ARE NOT ABLE TO USE BOTTLE YET. I HAVE HAD ALOT OF UPS AND DOWNS IN THE PAST 3.5 WKS WITH THEM BEING THERE, ONE DAY WE GET GREAT NEWS THEN THE NEXT WE HERE BAD. IT IS SO UP AND DOWN. I ASK ALOT OF QUESTIONS TO EASE MY MID THOUGH. I AM HAPPY TO SAY AS OF 5/26/06 TWIN B CADEN FINALLY IS HOME. HE IS ON A PULS OX, NASAL CANABELA (CANT SPELL) OR OXYGEN AS WE ALL WOULD SAY,AND AN APNEA MONITOR. THEY ANNOY ME BUT REALLY PUT ME AT EASE KNOWING I WILL HERE A LOUND BEEP IF SOMETHING GOES WRONG. ALL THESE WIRES THOUGH NEED TO GO. HA HA! I AM SOOOO HAPPY TO HAVE HIM HERE WITH ME FINALLY. TWIN A CALEB IS STILL IN NICU NOT DOING SO WELL. LOTS OF APNEA AND WILL NOT FEED FROM THE BOTTLE STILL. PROUD TO SAY HE IS 4.13 THOUGH. HES GAINING WEIGHT JUST WONT USE THAT DARN BOTTLE. I LOOK AT CADEN AND JUST PRAY EVERYDAY THAT CALEB WILL COME AROUND LIKE HE DID SO I CAN HAVE BOTH MY ANGLES AT HOME IN MY ARMS .

 

Hi I too am new to this site my Beautiful twin daughters were born 6/30/06 34 weeks and 6 days gestation. After a wonderful vaginal delivery and great birthweights (Allison 5lbs, 14oz. & Breanna 5lbs. 11oz.)they were both wisked off to the NICU. I know that I am so lucky and my heart and prayers go to all and everyone who has had to go through this for any amount of time, because the week that they were there was the hardest week of my life. How was I to know that eating was going to be such a problem but just as the neonatologist said once they catch on there will be no stopping them and we would get that wonderful phone call to come pick up our daughters, and we did but not at the same time Breanna caught on a little quicker than her older (by 5 minutes) sister. But 2 days later we got the call to come and pick up Allison. So they are both home doing wonderful now.

Now lets just see how the next 18 years go...

God bless you all

 

I wish I had known about this site 5 months ago. My baby boys were born at 31 weeks, and came on April Fools Day. So of course, no one believed us when we called to tell them I was having them. Bryson did very well, and after 5 weeks was able to come home. He came home with an apnea monitor, but we had no major issues to deal with. Hayden, on the other hand, spent almost 4 months in the NICU and had quite a struggle those months. Not only was he premature, which was enough to worry me, but he was born with Situs Inversus (mirror image organs heart on the right, stomach on the right, etc..) which typically doesn't cause health problems, but when the doctors were feeding him the first time he stopped breathing and had to have chest compressions. We later found out that his esophagus attached to his lungs, which is where the milk was going, and that is what caused him to stop breathing. He had a major surgery when he weighed only 3 lbs., and it was a surgery that took 4 surgeons. The 4 top surgeons in BR, Lousiana had never seen anything like it, but were able to repair Hayden's esophagus, along with a few more abnormalaties. God worked a miracle and both of my boys are together now. Hayden is on a feeding tube that feeds him constantly, but he can take a few bottles a day. His stomach is 4x's smaller than an average baby, so at 5 months old he only takes 1 ounce in a bottle. My experience with the NICU was one I would like to put in the past, not because of the nurses or doctors (they were wonderful), but it was the most difficult thing I'd ever been faced with in my entire life. When I had to leave them there, I left my heart every night. I wanted to hear them cry, I wanted to rock them without someone watching me, I wanted to bond like any new mother wants, and I just couldn't. My arms were empty at night and all I could do was smell the onesie they had worn and sleep with them under my pillow. Everytime the phone rang with the caller ID of the hospital, my stomach would sink wondering what they were going to tell me. What a blessing it was to bring Hayden home to be with his twin brother, and to have my family under one roof. All of Hayden's problems are fixable with time, and even though it may be a road with speed bumps here and there, we will get there.

 

i just realized that i had post back a while ago when the twins were first born so i thought id give an update on them now at 6mths. well caden is doing very very good he weighs alomst 16lbs and is rolling over now and trying to crawl lol notice i said trying he gets so mad when he cant get up.
caleb is still a little tiny thing he weighs i belive 11 lbs 2 oz and has no hair still lol. caden has a head full.
caleb is getting his 1st tooth and he looks soooo cute. i had a lady ask me the other day why my 2 mth old child has teeth already. i just laughed like mamn hes almost 7 mths old. that shows how little he really is. medically wise they both are doing good. off all theire monitors and free to be boys. caden is in need of getting a doc band for his head. but other than that all is well.

 

Hi, I am new to this site and chat rooms. I have 2 1/2 year old, Emily and fraternal twins Hannah and Isabelle who just turned 1.
Hannah and Issy were born on Thanksgiving morning last year at 26 weeks. I got a listeria infection which started my premature delivery. Hannah had the infection as well. The girls weighed 1lb 10oz each. They both had PDA ligations, this caused a vocal cord paralysis in Hannah. Issy had laser surgery for 2+ retinopathy. Hannah came home after 83days and Issy after 91 days in the Nicu. Unfortunately Hannah then caught a cold and spent another 3 weeks in a different NICU, this experience was not a good one. We have PT/OT/ST for the girls. Issy is crawling and only wants to be held. Hannah is commando crawling and is our serious girl. Big sister Emily is having some 2 year old issues and now jelousy particularly when the girls touch her stuff!!!
I think I am finally learning to relax a little. We fought so hard to get the girls to this point, I was constantly afraid something would happen and we would lose one or both of them, is this a normal reaction?

 

Hi ladies! I am a newbee. I'm a proud mom of twins; a boy and a girl; Nicolo and Nyanna. Will have to post their pics soon. They were born at 25.5 weeks and stayed in the NICU for 70 days. My daughter just got off of her monitor today...YAY! The last attachment for either one of them. Wow, what a long haul we have been through, but I'm so happy to have found this site. Nice to meet you all!
Jenn

 

I am new to this site, I have 8month old twin boys they were born at 27weeks Devin 2lbs3oz and Davion 2lbs4oz they came into the world on 9 December 2006. It was very hard for me but i really have so much to be thankful for they have no health problem they were just small. I am really happy that my friend told me about this site, because it helps to talk to those that know how you feel..

 

Hello everyone. I just became an aunt to two identical girls, Caroline and Olivia. Both were born late last night at 27 weeks gestation, and suffering from TTTS. Olivia is the larger of the two.

My sister had preeclampsia, and is very frightened. Her husband is home with the flu, and could not even be at the hospital. This was her first pregnancy at age 37, and she also suffers from a microvalve prolapse.

This pregnancy had not been easy for her. She was sick from day one, and suffered from morning sickness - morning, noon and night. And to see the most wonderful day of her life come with such worry... it breaks my heart.

Shelly and her babies are 400 miles away from me, and surrounded by her in-laws. But any extra prayers would be so helpful.

Any advice on what to expect?

 

QUOTE(PreemieTwinsAunt @ Sep 13 2007, 09:11 AM) [snapback]405870[/snapback]
Hello everyone. I just became an aunt to two identical girls, Caroline and Olivia. Both were born late last night at 27 weeks gestation, and suffering from TTTS. Olivia is the larger of the two.

My sister had preeclampsia, and is very frightened. Her husband is home with the flu, and could not even be at the hospital. This was her first pregnancy at age 37, and she also suffers from a microvalve prolapse.

This pregnancy had not been easy for her. She was sick from day one, and suffered from morning sickness - morning, noon and night. And to see the most wonderful day of her life come with such worry... it breaks my heart.

Shelly and her babies are 400 miles away from me, and surrounded by her in-laws. But any extra prayers would be so helpful.

Any advice on what to expect?


That is very nice of you to be so concerned about your nieces. Love the names, my oldest DD is Caroline. My two were born earlier than your nieces, see siggy for details, but they did very well in the NICU. I was lucky enough to get the steroid shots 10 days before Emilie was born, she was on a vent for 4 days, and Trevor NEVER went on a vent at all. They were in the NICU for 8 weeks. Emilie had a few ups and downs, that is very very common in the NICU, and got an infection, needed 4 blood transfusions and got a very mild case of RSV the week before she came home. Trevor had a much smoother ride as he only needed one blood transfusion.

I don't have any experience with TTTS, so that may make a difference in their NICU stays. But it does vary with each child. There were some babies in the NICU with us that were born at 35w and doing much worse than my 2 little ones. Mine luckily were healthy, they were just small.

You can expect them to be in the NICU until they would be 35w (pregnant) -their actual due date. It could be longer too, it just depends on so many different things.

Please feel free to post anything in the NICU forum that you have questions/concerns about with your nieces, or if you just need to vent or some answers.

I hope they have an uneventful NICU stay. :hug99:

 

hello all
i am new to the site. i had my twins Hailey and Gabriel at 30 weeks. they were born October11,2007, they were due December 18. they are in the NICU unit at Womens and Childrens Hospital. they are doing good. that hospital is a great hospital. Hailey weighed 2lbs 11oz and Gabriel weighed 3lbs 3oz. I can't wait until they come home. well i'm sure i'll be spending alot of time on here with you all.
Michele

 

QUOTE(Kristi F. @ Apr 19 2006, 05:27 AM) [snapback]94221[/snapback]
As you can see, we have been renamed. This forum is now not only for our precious NICU babies, it is now also about the reality of raising premature babies. Alot of us have had a hard time in our experiences with having premature babies. There are many of our children with long lasting effects and some without. This forum is now for all of us. Please feel free to discuss anything having to do with your premature babies here. We will be a support forum for moms with babies in the NICU through the upcoming years of dealing with adjusted ages. <BR><BR>Please share your experiences with us. We will all be here for each other.

Hi. I gave birth to a handsome baby boy and a beautiful baby girl at 28 weeks 4 days. So far so good. A few minor setbacks, blood transfusion for Gerard, both needed a lombar probe to check for meningitis. Gerard also has a heart murmur (possible PDA). But docs say these are all common. On the bright side Catherine has started ger gavage feeding and pumping is going well. Both pretty feisty! I got a temp and had to start iv / antibiotics so my discharge is postponed...very upset! I have a 2 year old boy at home and have been in the hospital since May 31st!!! Any and al advice and or support will be greatly appreciated!
Carolyn (cburke2)

 

My boys were born at 31 weeks and spent 67 and 74 days in NICU. We had lots of set backs, infections, feeding intolerences, prolonged intubation, PDA's all the usualls. They are now 8 months old and we have been receiving PT and OT for four months. They say my little guys has some motor/sensory problems that are common with prems and should grow out of it. My bigger guys seems to be developing fairly normally. I am having trouble with comparing them and their progress. I am also having difficulty with others comparing the boys as my bigger guy is 4 pounds heavier and 3 inches longer. I am also getting frustrated with PT and OT, they are confident that my little guy will eventually grow out of his problems but I am not so sure. I have done alot of research and I beleive that my little guy has cerebral palsy. They tell me it is to early to diagnosis and to just keep waiting. Well the waiting is driving me nuts!!! I want to know if there is something more I should be pushing for or doing for my little guy? I feel that I am not doing enough for him because he seems to be regressing in his progress lately. Does anyone have expereince with this ?? I would appreciate any feedback.
Thanks