New to NICU life....my son born at 24 weeks..need advice.

• By snopro142
• Posted April 8, 2008 at 3:45 am
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Yes!
Your 24weeker has a great chance. I am the father of a former 26.6 weeker born 2lb7oz/14" who spent 81days in the NICU with the hole in the heart (PDA), Stage 2 ROP in both eyes, NEC causing an intestinal perforation, almost no blood pressure for days, severe liver disease, multiple transfusions, on ventilators for a few weeks and Grade 2/3 bleeds on both sides of his brain. It has been a long 18months, but now we have a 21lb / 30" incredibly bright toddler who is meeting almost all his milestones. His intestines were reattached w/no lasting problems, his bleeds went away, the hole in his heart closed, his liver has healed, his eyes are perfect and he runs and climbs like a crazy man.
There is always the looming spector of problems with micro preemies. The most improtant thing is to stay positive and go and see him and talk to him as often as you can and when you are able, hold him as much as possible. Many of the staff in the NICU thought that it was how we acted that had the most positive influence on his recovery.
Stay strong and deal with each problem as they come up. Dont spend all your time worrying about what could happen as it will drive you crazy. JUst love your child as much as possible and take it day by day.

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• By erikar
• Posted April 8, 2008 at 4:05 am
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28 year old Mom of a 26 weeker born 10/11/07. I have PCOS also (not that it had anything to do with my water breaking at 24 weeks) but my baby was also an IVF baby. Sarah was born weighing 14 ounces and given 0% chance of survival in her first 60 minutes of life. We were told to "turn off the machines and let her pass away in our arms". She had blood sugar issues, 3 blood transfusions, no brain bleeds, no heart issues, a BROKEN LEG (due to Osteopenia), was on on the vent for 4 weeks, Vapotherm for 8 weeks and regular oxygen until the day before discharge. My husband and I brought her home on 2/1 after 114 days in the NICU with no oxygen support. Because she has reflux, she is on an NG tube to help supplement some feedings. Not too bad for the baby with no chance of survival. She weighed in today at nearly 8 lbs and is 6 months old this week- 3-months corrected. Please see our blog we made to document our journey. Go back to her first days of life and you can follow our roller coaster. I am not going to lie, this is going to be the hardest thing you will ever endure but with love and faith you will get through it. PLEASE CALL the NICU 20 times a night. I called every time I was up pumping and asked the same questions. You are the mom and don't forget that!
babygirlrees.blogspot.com
If you comment make sure to tell us you are fromt he preemie support group.
HANG IN THERE MOMMA. Your son needs you to be strong for him!

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• By Lynn3
• Posted April 8, 2008 at 6:23 am
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Yes! Absolutely, yes!!!!! Your son does have a chance! I am a mom to former 27 week old twins. I was hospitalized at 25 weeks due to preeclampsia. Everyting changed overnight. I went for a routine physical and was admitted right away. I didnt' even know there was anything wrong. My baby girl weighed 1 pound 5.6 ounces and my son weighed 1 pound 4.8 ounces. They are turning four years old soon. I still remember vividly what you are going through. We spent 109 days in the NICU receiving both terrifying and surprising news daily. There are some days I can't believe we made it through it all, but we did! You will too! My twins are doing very well! I understand how you feel, but I found it the most helpful to focus on what I could do each day for my babies. What happened, happened. No one can change it. Keep us posted. You and your son are in my prayers!
Lynn3

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• By LogansMommy07
• Posted April 8, 2008 at 7:26 am
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I know exactly what you are going through, and when we were going through it all I wanted to hear was that my son would be ok. My son was born at 28 weeks weighing 2lbs 8oz. He went through 3 transfusions, and one bad infection that he got from the picc line. He ended up coming home on oxygen and got to come off of it pretty close to his actual due date. He is now 11 months old, and weighs 22lbs and is an energetic and inquisitive little guy. Thank god that with all the technological advances that the hospitals have even the tiniest of preemies have excellent survival rates. There was a baby that was going home a week after my son and he was born at 22w6d, of course his stay at the hospital was longer, but the point was that he was doing amazing and going home.

It is such a rollercoaster ride one day your up and the next day you are down. Two steps forward one step back, but you have to keep only positive thoughts and just keep thinking about the day your little guys gets to come home with you.

The fact that your son has no brain bleeds is AWESOME!!

I know you are probably so busy right now, but if you have any questions my email is krisd814@yahoo.com.

Keep up the good work.

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• By obukurom
• Posted April 8, 2008 at 7:48 am
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My son was a 25 weeker. 1 lb- 11 oz. We spent 122 days in the NICU. He is now 2.5 years old and not a single problem from prematurity. I would suggest seeing if your NICU has a support group. My son was born at Northside Hosptial in Atlanta, we have a group- Parent's partnered for Preemies. They meet every Thursday night. It is a great place to talk to other people that are in your same situation and know exactly what you are going through. They were and still are a big help.
That is awesome that your son doesn't have any brain bleeds. I will be praying for your son and your family. Please keep us updated on how he is doing. Please email me (obukurom@netscape.net), if you have any questions or need to talk.

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• By funkyme
• Posted April 8, 2008 at 7:58 am
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Hey, you cannot think there isn't a chance.

My daughter was born at 27w6d. She weighed 1lb 1oz at birth and was only 12 inches long. I was in the hospital for 10 days before the c-section. Growth wise she was at 22 weeks - stopped growing after that in the womb. Almost all the docs being consulted told us to not even try going through a c-section. They advised I should opt for a vaginal delivery - that the baby would never survive - coz the baby was not going to make it anyways - or would have many issues, if survived. So we should spare my body from having to go through a major surgery. My husband and I could just not give up on the baby.

I am proud to say my little miracle is now almost 10 mos old , 7 corrected. Is meeting all her milestones and is a fun, healthy (though small) baby. She was in the NICU for 72 days and is now almost 12 lbs, 25 inches tall. huge progress for a baby not meant to survive!!

I agree with the dad who commented earlier - the entire NICU staff believes the quality of time we spent with her when she was in the NICU made all the defference. Collect yourself and just bedetermined to make a difference. Hold your baby and talk to him as much as you can - does not mean you have to be there 24*7 or agonizing over not being able to be by his side. Just make your prescence known. Each one of us have a sad story to tell - unfair, unjust things that led to it all. but one thing is for sure none of us did anything to make it happen - you didn't either. So please stop feeling guilty - save your precious energy and use it positively. YOU CAN MAKE A DIFFERENCE. Everything bad that can happen to a micro preemie need not happen to yours. believe in yourself!! Do keep us posted on how things go.

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• By scottj
• Posted April 8, 2008 at 8:36 am
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Your son absolutely has a chance! No one can tell you what the future holds for your child or give you any guarantees but like all these other parents told you, your son can survive and thrive. My son, Nate, is a former 25-weeker and today he turns 3! He had all of the ups and downs that you are describing in the NICU. He spent 100 days in the NICU, came home on oxygen and a monitor but today if you saw him, you'd never know his troubled beginning. He is awesome! You have a long road ahead but take each day as it comes and LOVE your son as much as you can, talk to him, sing to him, I really believe that the love the child feels helps to pull them through. God bless. You are in our prayers and reach out to us anytime!

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• By jodi2
• Posted April 8, 2008 at 8:36 am
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Congratulations on your little guy. Just like everyone else has told you, he does have a chance. I delivered my son at 26 weeks and he weighed 1lb 1oz and was 11 3/4" long. Because of his size, they treated him as a 23 weeker. The doctors never came out and said he wouldn't make it, but made it very clear we had a long road ahead of us if he did make it.

The other parents have given you great advice. I wish I had known of this website when my son was in the hospital. Like you, I had no one that really understood what I was going through. This is going to be a long roller coaster ride.

My son was in the hospital for 105 days. He had a hard time coming off the ventilator and gaining weight. We were fortunate there weren't any brain bleeds, his PDA closed with the help of medicine, his blood pressure was usually high, was on numerous different medications, had numerous blood tranfusions, and was very sensitive to noise and lights. He is moderately hearing impaired, but they are not sure if it is from the prematurity or if he would have had it regardless.

The best thing you can do is be there for your son. But, you also need to take care of yourself and let your body heal. There were a few days I didn't go and see him because I didn't feel up to it. The nursing staff will not think you are a bad parent if you stay home to catch up on sleep or stay home because you don't feel good.

There were days that my son could not tolerate a lot of talking, but just sitting by his isolette he knew we were there. On good days, I would read books or tell him stories. On bad days I would hold his hand for a minute. I was not able to hold him for longer than an isolette change until he 1 1/2 months old.

I understand your frustration of your son not being able to eat your milk. My milk flow did not come in very well, and did not last very long. It was frustrating for me. One day his feeds would seem so small and the next day they seemed so large. After awhile I could not keep up with him. I am sure they have encouraged you to keep pumping and freezing your milk. If they haven't, start doing it if you want.

By now you may start feeling a little attached to one or two of the nurses. That is good. I think that is what got us through our stay. The nurses aren't there to make friends, but it sure does help when you can bond with at least one of them. We would ask our favorite nurses questions we didn't understand, sometime multiple times. If we didn't like the way something was done, we would go to them. However, there were days I was jealous of these favorite nurses because I felt they knew my son better than I did. I think that feeling is normal of every preemie mom. But pretty soon you will be able to start changing diapers, giving baths, and when he is ready help with feeding.

The only other thing I can suggest is buying a book. I unfortunately cannot find the book that I bought while he was in the NICU. It was a great book because it explained life in the NICU and what you can expect when you go home and into the toddler years. I tried not to ready any of the things that may happen to your preemie while in the NICU, because it gave you something new to worry about. But whenever they would run a test, or if something happened I was able to look it up and read it however many times I needed to.

The fact that your son has made it this far shows that he is a fighter. That is what you need. My son gave the staff a run for their money, and I am so glad he did. He is now 2 1/2, always on the go, and is not scared of anything. Developmentally he is where he is supposed to be. He is still pretty small for his age, but doesn't let his size stop him.

Good luck to you and your family.

Jodi

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• By IanMommy
• Posted April 8, 2008 at 8:54 am
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I have a 25 weeker and he had lot of bad days we where there for 4 1/2 mths. Stay postive if you read remember not everything bad is going to happen. go to all the support groups you can find. My son is now 17 mths 21 lbs off all meds but flovent and has therpy two times a month.

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• By redbankrob
• Posted April 8, 2008 at 8:56 am
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My twins were in the NICU for 7 weeks and it's tough. They were born at 30 weeks so I do realize it's much different then 24 weeks. Matt stopped growing at 24 weeks and basicially was a 25 week gestation baby at about 2lbs.

The only advice I can give you is not to get to UP on the good days and too LOW on the bad days. Try to stay even.

Of course a 24 week baby has a chance!

A brain scan was always done with preemie babies at the hospital we delivered in NJ.

My little guy had one blood tranfusion, it's amazing that's it not the uncommon with preemies. The good news is that there is basically a 0% chance of getting any type of disease through it.

Before you know it your baby will be driving you crazy like mine are right now! Keep you chin up!

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• By laninews
• Posted April 8, 2008 at 9:10 am
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HI new Mommy,
you and I have alot in common. I too have PCOS and i also have a faulty kidney which is what cause me to get an infections thin out my plug and go into labor. My little girl was born at 23 weeks and let me tell you I blammed myself all the time. Im not sure of your religious believes but in my situation God has given me one of his special Angels to care for. My little girl had all of the complications a preemie could have. Like you we didn't know what was going to happen. We called every hour on the hour I had to go back to work the follow week after having my daughter. It wasn't easy and she was sent home on hospice and here we are over a year and a week from coming home and still do not know what will happen tomorrow but we do go and take her out she goes to therapy and visited our local youth fair and we are going to orlando florida for the first time this weekend. We were blessed at the beginning with patience, strength, guidance, and our doctors with the knowledge to care for our little one. I will include you in my prayers. Hope to hear from you

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• By becky5
• Posted April 8, 2008 at 10:16 am
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Don't blame yourself for what has happened. As badly as you wanted to be pregnant, I am sure you took care of yourself and that is all you can do. This is all a part of God's great plan, through trials we become stronger. I had two sons born full term, them my last one was born at 26 weeks. There were ups and downs, tears and smiles, but he is now 9, 10 in May and the only sign he was a preemie is that he is a little small for his age. Hang in there things will get better. PS part of the emotional issues right now are hormones and will get better soon.

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• By Mom2Elijah
• Posted April 8, 2008 at 10:17 am
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Absolutely your boy has a chance!!! My son, Elijah was born at 24 weeks as well on 5/6/07 and he weighed 1.4 pounds and was 11.25" long. This was also our first pregnancy and we didn't know what to expect after he was born. Everyday was scary, but we were told with micropreemies that they will have good days and then the next could be a bad day. It was always up and down. Elijah had no brain bleeds and the hole in his heart closed on it's own. He stayed on the respirator for 8 weeks before being able to breathe on his own. Their first attempt to take him off did not work. He had to go back on after 13 hours. He also fought off a few infections. He stayed in the hospital for 104 days - he came home the day before his due date. When he came home he was on oxygen and an apnea monitor for 2 months.

Today he weighs 15lbs 9oz and is 26" long. He actually just had his follow up appointment at the hospitals NICU clinic and he did great!! He is meeting all his milestones for his corrected age. They (and many others) told us that you would never know he was a 24 weeker.

I know all this can be very scary - my husband got me through a lot of it because I was always thinking the what if's. I blamed myself as well for him being born so soon, but it was nothing that we did. These babies are stronger than we think and he will pull through with flying colors. Be strong :)

Renee

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• By Jewele76
• Posted April 8, 2008 at 10:39 am
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Are stories similar. I also was dx'd with PCOS. We finally got a PG to stick (so we thought) well to make things short I went in for a dr appt at 24 weeks and I was already dilated to 3cm so I my dr had my hubby rush me to the hospital and there i stayedon strict bedrest for 11 days. He decided he just didn't want to wait my water broke and with in a few hours i had a baby via Vaginal delivery just like another poster said they didnt give him much hope Wyatt was born 12 inches 1lb 15oz. Here we are 2 and a half years later. It was a long road I will not kid you we spent 121 days in the hospital. Like you we didn't have the brain bleed but when he was 2 weeks old he had the heart ligation the meds just didnt work. He was on the vent for 2 months and was all over the place on what he needed some days he needed more O2 others not so much.
I was also a nervous wreck at night I could't bear calling so I always dialed and handed the phone to my DH then he would fill me in. The dread I felt was awful but as they gain weight it gets better. Likes som of the people suggested I would take advantage of support groups. We didn't have this option as my son was born in Germany and I wished the whole time I could talk with other parents.

You are in my thoughts and prayers!

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• By LoveMyBoys
• Posted April 8, 2008 at 12:12 pm
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Congratulations Mommy! Your son definately has a chance! He has parents who love him and you'd be amazed at how much that is! I also understand about blaming yourself - I actually had the neonatologist come in and talk to me about this and while cognitavely I know nothing could have been changed, it is sometimes still hard. My son was born at 28 weeks due to my severe and worsening heart failure - he was happy and healthy inside but had to be born at due to the risk of my life... once born, his life was at risk! He had severe respitory distress syndrome, tore a HUGE hole in his left lung, needed a chest tube, had a PDA, and ASD, a grade II bleed, a spontaneous intestinal perferation requiring surgery, intestinal blockages, severe feeding intolerance, several transfusions, clinic sepsis, ROP... a ong list - I was told on day 3 that they weren't sure he would survive and if he did what he would be like... after he survived another day and they did a cranial ultrasound I was told we would need to discuss discontinuing care if his bleed was a grade IV and maybe even III... to make a long story short he ended up coming home a month before his due date at about 4 1/2 pounds with no support (no monitor, no O2, nothing!) they called him the miracle baby! He is now 27 months actual, weighs 32 pounds and is 35.5 inches tall! No one believes his history by looking at him! That being said, those months in the NICU were the hardest of my life. Take things 1 day at a time, and there were lots of days we needed to take things an hour at a time! I found myself longing to talk to other parets who understood - ask the NICU social worker if there are any resources available. One more thing, the day I sat by Alden and was told he wouldn't survive was the first day I was really able to see him due to my own illness. After the dr finished talking to me she looked at the monitors and Alden said that the time we had just spent in there was the most stable she had seen him - she told me, he knows you're here... the night nurse later told me that she saw something change in him that night - he began fighting so hard and improving... being there with your baby, checking on him -- that's what you can do. He knows you're his Mommy...

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• By emmaemilysmom
• Posted April 8, 2008 at 12:33 pm
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Yes keep positive your baby will be ok I am the mom of 3 year old twins born at 28 weeks it may be hard but keep believing that everything will be ok it will email me if u need to talk we spent 3 long months in the NICU and our girls are doing great

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• By cadencesparents
• Posted April 8, 2008 at 1:59 pm
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Congratulations on your precious baby! Absolutely your boy has a chance of survival! Our daughter was born at 26 weeks weighing 1 lb 11 oz. She spent 87 days in the NICU, endured a PDA ligation (hole in the heart), Grade 3 Brain Hemmoraghe, and a duodenal web (instestinal blockage) that required surgery and also made it so she couldn't have breast milk until she was 1 month old. Today she is a happy 7 month old that has figured out if she rolls over she doesn't have to put up with Tummy Time, LOVES watching TV and standing and brings joy, hope and encouragement to so many people.

The NICU experience is a roller coaster like no other. Lean on your family and your loved ones. Don't let anyone tell you that you shouldn't be crying. Experience all the emotions that come your way, even grief, but never, ever give up hope. Keep pumping breast milk, it's the one thing you can do for your son that no one else can do, not even the neonatologist. I know it's immensely frustrating to know that you can make this liquid gold, but your baby can't have it yet. Drove me to tears so many times while we were waiting for her body to heal from the surgery. But once she started taking it, her feedings just took off. Pumping is a huge pain (if you can, pump in the car on the way to the hospital if you have someone else to drive you, sounds crazy, but if you are just sitting there anyways, you might as well. And it will give you more time with your son during your visits), but it truly is one of the best things you can do. And it's nice to be "in control" of something.
My advice to you is to stay off medical websites. This board is great, check out preemie blogs (a link to mine is below), but medical websites often list worst case scenarios that will just be scary and overwhelming. As the medical team at the hospital if you have questions. Post here for a wealth of information from other non-medical people who have been in your shoes.
The other piece of advice is to get a digital recorder so that you can record you reading stories, talking, singing to your son. The nurses can play this when you aren't around which will help make the time you spent away from the hospital just a tad bit more bearable. My 7 month old (4 months out of the NICU) still loves to listen to the recording my husband and I made for her. It's one of the few things that can calm her down when she is overtired. And it's fun to listen to us talk to her and get so excited when she peeks her eyes open. It reminds us of how blessed we are and how far she has come along.
If there is a March of Dimes program at your hospital, try and get involved. Our hospital had scrapbooking nights for NICU parents. It was nice to get away for an evening and just be around people who understood. Even though we weren't very social at the events, it was nice just to be with people "who got it" and were going through the same things.

Be there for your son and never give up hope. Your encouragement is the most powerful thing you two have.

Amanda
http://therowanblog.blogspot.com

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• By sillyraina
• Posted April 8, 2008 at 2:11 pm
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I am the mom of a former 23 weeker, I had a placental abruption of over 50% and the doctors weren't sure if I would even make it through the delivery or the baby because of the amount of blood lost. Marie-Rose was born 3/27/07, weighing in at 508 grams, or 1 lb 0.8 oz. She was 11 1/2 inches long at birth. The doctors told us not to get our hopes up, that it was very likely that she wouldn't survive the first 24 hours. Well, apparently they forgot to tell her that, LOL! It was a rough road in the NICU, she was on the oscillating vent for 7.5 weeks, couldn't tolerate the conventional vent at all. SHe had multiple infections, staph, geotrichum, lots of rare stuff, 18 blood transfusions. SHe had a PDA ligation, and 2 ROP surgeries. She has no peripheral vision due to the ROP. There were lots of days that we didn't think that she would be there the next morning, or even in the next hour. I hardly ever left her bedside. We had many NEC scares, but thankfully no NEC. She did have a grade 1 bleed in her brain, but no brain damage. After 126 days in the NICU she came home, on oxygen and with an NG tube. In October, the NG tube was changed to a surgically placed g-tube, and in February she came off the oxygen. She turned 1 about a week and a half ago. SHe is now a happy healthy baby, who is "morbidly obese", LOL!, if you can imagine that. :-) She weighs 20 lbs 11.5 oz., and is 27" long. She still aspirates everything so she has a g-tube, but she is off the oxygen and a wonderful baby. SHe can roll over and sit up by herself, rocks on her hands and knees, and soon should be crawling. She does wear glasses, but she is doing so well. Your son DOES have a chance. Keep praying, and just be there until you can hold him. When you can hold him, do it as often as you can. Talk to him. Keep pumping so that he can get the breast milk. Sleep with one of his blankets or something that is in his bed with him so that it gets your scent and then put it in with him so he can smell you. Good luck, and keep your chin up.
Raina

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• By Larnett
• Posted April 8, 2008 at 2:22 pm
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Congrats on your baby! yes he has a chance!!!!! My son a former 24 weeker was born May 14, 2007. He was 15oz, 11 inches long. We spent 151 days in the NICU, and every day was very up and down. He has had 5 surgeries, from a perferated bowel due to NEC, PDA ligation, ROP stage 3, Reostomosis, and a G-tube. He is 11 months old, 7 adjusted and he is doing great. He is on the small side, 13 and a half lbs, but he is my little miracle baby. His eyes are good, he can hear great, and he is slowing learning to eat by mouth. I know how hard it can be, but just hang in there. I will be thinking of you and your little miracle... please keep us updated!

Leah

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• By Sandy_Turnbeaugh
• Posted April 8, 2008 at 2:26 pm
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I will never forget that awful feeling of leaving the hospital and leaving your baby behind. My husband will tell people today that it was not your Norman Rockwell style birth. You have all of the thoughts of how great it is going to be and you will have your baby there and then you will both go home and then everything changes drastically and you don't understand much of what they are telling you. It is amazing how much you have to learn so fast. My son was born at 32 weeks, so I know my experience was much different, but I do remember everything was always changing with his health and it was one scare after another. It was always up and down and something different. That was 16 years ago for me and now my son is 6'3 and weighs 190 pounds. Call the hospital every time you wake up to make you feel like you are in contact with your baby. We even taped a picture of us and our dogs, I think it was more for us.
My point in posting is just to let you know that others understand and never forget, and to give you hope. When I was there, there wasn't anything like this and I didn't know anyone that had given birth to a preemie. This is so wonderful to have this sight. It is a long rocky road but you will get through it. When I see that stubborness in my son today, I remember that is what kept him alive when he was going through all of this. He is a fighter and I know he can get through anything now and I tell him that when he is going through a tough teenage struggle. I hope this gives you hope.

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