Help when will my 24.2 weeker twins possibly get off of the vent?

Hello all I am new my name is Angelina 31 mom to 5 girls and wife to an awesome man. In short I am starting to buckle! I am so frightened the girls will never get off the vent! I had my twin girls 06/10/12 via c section weighing in at 1 lb 5oz and 1 lb 3oz, I had the steroid shots and they were in pretty good condition at birth crying etc. Initially they were on CPAP the first day then they just were to tired and tiny to continue, so both were placed on the conventional vent. Baby B Paige was on the jet just recently for 10 days and now baby A has followed in her footsteps both were having issues with their lungs collapsing. I am thrilled Paige is off of the jet but now it seems like I have to pull the Dr's teeth to get an answer as to how (with additional lung stimulating medications) and when she will try CPAP. I asked just yesterday if I should even be preparing to bring them home, and all I got is he doesn't know. That made me feel like my kids are never going to come home, they have had a few infections and pneumonia once and recovered with medications. The biggest issue is their lung disease. London had her PDA surgery two weeks ago tis past Wed but still has a murmur (does not require surgery) they're currently 2 lbs 7 oz. As most of you know once they have an episode of illness or blood issues feeds get stopped and days later restarted. I just feel so lost and empty, I just want my babes to live and come home with a good outcome. We were lucky they only experienced a grade 1 brain bleed 2nd day of life that resolved itself and that everything else is fine. They have just turned 32.1 weeks but are 2 months old now. Please help me regain my sanity and hope. My original EDD is 09-28-2012.

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The rule of thumb is expect them to go home around their due date, of course that not set in stone. If they are struggling, it will be longer, if they are not it may be sooner. My 25 weeker came home 6 days after his due date. As far as the vents...it's a tough road but not uncommon for them to go between vent, jet, cpap, cannula....very normal for preemies, particularly micros. Good luck and keep us updated.

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Congratulations on your daughters! My boys are 27 weekers weighting in at 1 pound 12 ounces (800 g) each. P came home on his due date, C followed one month later. While in the NICU P sailed off the conventional vent, did CPAP for a couple weeks the high flow and low flow cannula. A month before he came home he went back on CPAP for a week; he just needed the extra support. C did vent, then oscillator because he got really sick, then back on vent, 2 courses of steroids, CPAP, cannula, CPAP, then cannula. They both cae home on O2 for a year. You never really know what's going to happen. One day they can be on CPAP, the next back on the vent. It takes so many calories and effort to breathe, sometimes they need the extra support to grow better. You've probably already heard, one step forward two steps back; I always said the boys were taking baby turtle steps. Does your NICU have a parents support group? Consider going if they do. Speak to your doctor about post-pardum depression. I got it while the boys were in the NICU and needed meds to cope better. Don't be afraid to ask for help. You have to take care of yourself too.

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I don't feel as if i have PPD which I did suffer from with my 2nd daughter. I just feel stressed and just mentally drained a bit. The girls have just stayed on the vent and I understand what the docs mean about them needing to grow more but their just not positive everything is always like the worst case scenario about everything. There are weekly NICU support meetings but w/ the time and day considering my distance is just difficult. I have however scheduled a care meeting for this coming week.

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I think the doctors jobs are to kind of be harsh in what they say and make you aware of what 'could' be the case, but as many know it isn't the end all, be all.

i'm a former 24-weeker and was on the vent for 70 something days, so it's just a case-by-case situation. you never will know what is going to happen, good or bad.

do you have any family members or friends who can help give you some emotional support right now?

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Hi Angelina, welcome. Congratulations on your girls! I love their names.

My twin girls Elizabeth and Kathryn were born at 24 weeks exactly. Elizabeth weighed 1 lb 6 oz and had NEC with surgery and colostomy and sepsis and stayed on the ventilator for 7 weeks. She spent 3 days on the oscillator at about 2 weeks of life. She was able to come off after her PDA ligation. She went back and forth between the cpap and nasal canula a couple of times and came home on oxygen until she was 9 months actual/5.5 months adjusted.

Kathryn weighed 15 oz and had sepsis and underdeveloped adrenal glands which made having steroids necessary. Because of the steroids her lungs did better and she came off of the ventilator after 4 weeks. She also came home on oxygen and came off of it the same time as Elizabeth.

They spent 136 days in the NICU and it was the longest 136 days of my life. It is a roller coaster for sure and it sounds like your girls are fighters. Doctors are required to give you worst case scenarios. I wasn't told my girls would probably come home until they were about 3 months old and they will be one year old on 8/25!

Hang in there! Make sure you are eating and sleeping properly and get whatever support you can. And come here and vent and ask questions. This site helped me so much.

Take care.

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I am sorry your daughters are struggling with their lungs. Being girls and getting steroids, even being African-American, to be honest, all is in their favor in this area, but sometimes having the best of odds for a particular gestation doesn't mean the NICU route is going to be easy. You just never know. The doctors have to be cautious in what they tell you right now because they probably don't know at this point how it will all work out, but there is certainly hope. My son was born at 23.0 weeks and was on a vent for 11 weeks, until right at 34 weeks. We were later told that 34 weeks can be a critical time to get them off the veny by. He wasn't until then, but luckily things all worked out in the end. He was on CPAP for 3 weeks and then a nasal cannula, which he came home on 7 days past his due date. He was on oxygen here for 4 months. When he got off the oxygen, we were told he was their healthiest BPD patient. So it was a major turn around. He did not deal with pneumonia or a collapsed lung as far as I know (we adopted him). He was on lasix some...that helped a lot with his vent numbers. Some babies need to go on steroids to help them get off the vent. That may be something for you and the doctors to look into if they don't start to improve soon. That's great about the small bleeds only. My son also only had a Grade 1 bleed. Keep us posted.

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I know exactly how u feel Angelina. My daughter was born 24w 1d and she was on the vent for 3 months with only 1 failed attempt to extubate. I did aLOT of reading and googling in my 5+ months in the NICU and I eventually got to the same point as u. I heard it wasn't so usual to b vented for so long. My daugter had a murmur that went away and kept coming back and she came off the vent the very next day after her pda surgery. Perhaps your daughter could be similar there? I just know how hard it is. My due date was 4/10/11 and my daughter didn't come home until 5/25, over a month past edd. Buuuut, she has had NO major issues requiring readmission since and she's doing amazingly now. I'm praying for u and those babies. Just look forward to that and look at the time in the NICU like they're just getting more perfect for u to take home!. Hugs.

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Hi Angelina ! Congrats on your twins ! My son was born at 27 weeks and he was 2lbs 7oz,he meaning we spent seven long weeks in the NICU. It was hard,frustrating and exhausting to say the least . I can totally understand where your coming from,w also wanted questions answered and got some of the same results as you. But just know that your baby's are in the best possible 24hr care and enjoy your sleep now if you can! My boy has been home a week today and it is so great to have him here but the adjustment can be trying at times. My wife has this saying which used to annoy me , but now helps me "slow and steady wins the race" it ha proven to be true for us and I wish you all the best !

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Congrats on your twins!!
My middle child was 27w5d and we kept hearing "not yet" when we asked when he was coming home, until one day they said "OK, he's going home tomorrow" WHAT? Last week you didn't know and thought it would be months...we then had to scramble to get everything ready for him. The day will come when they get to go home and it will be when you least expect it(at least it was for us). My newest edition was born at 35wks with no problems, no O2 requirements, basically perfect and they still kept her almost a week. Sometimes it makes no sense and you feel like you will never bring your babies home, but they will come home and you will be so grateful for the day-and never forget it!! Having a preemie is an experience that changes your life in so many ways, most positive and some not so much, but most of us wouldn't trade it for anything. Wishing you continued success with your girls and hoping you can bring them home healthy very soon!!

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I will also add that this site is invaluable, I did not have it when my 9yr old was in the NICU and it would have helped SOOO much before and after our NICU stay(my son was ultimately diagnosed with CP at 8mos), I had so many questions and felt so many emotions that "normal" parents didn't understand and I had no one to talk to that understood...or even knew what I was talking about. All of us were where you are now at one point, and we understand the feelings and emotions...vent, ask questions, whatever you need to do, we are here for you and that is an invaluable resource!!

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Welcome to the site and I am sending you virtual hugs! Congrats on your AMAZING fighters!

Going to a hospital every day can be seriously draining. And then hearing negative concerns can drain you farther. I think every parent on here can relate to this big time. And then there is the rest of life to deal with beyond the NICU.

Some thoughts:

- Can the hospital support group connect you with another former NICU Mom? Maybe the leader knows of someone or a local support group? You didn't mention where you lived. If you can give me an idea of the state, that would be great.

- Remember that while the doctors are constantly feeding you information you might not like to hear, they are doing it not only protect themselves but also to prepare you for the possible and I repeat possible worst case scenario. The doctors can be rather cruel in this respect and it is annoying. Sadly they see this type of thing day in and day out for years and decades. BUT - they do not know the spirit of your girls. YOUR GIRLS. Not theirs, YOURS. You know more about them then you realize.

- Sing to them, talk to them, read to them and whenever humanly possible touch them. If they can be Kangaroo'ed on the vent, do it. The more the girls hear you, feel you, smell you, the better the outcome for them and for you as well. You are going to have to push for this, not expect the pros to suggest it.

I am so glad you found this group as well. Please let me know if there is anything I can do to help further. And please feel free to "friend" me on here.

- Deb, Moderator

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Thank you Deb,

To answer your question I live in Northern, Va. I spoke with a fellow (Dr. of course but she is considered a fellow) the way she put it is the girls have had s many infections that it has majorly set them back with there coming off the vents due to needing the extra support during their illnesses. Hopefully we are past the infections and on to better days. They are still wondering if the infection I incurred while still pregnant had anything t do with the numerous infections they have battled but nothing has come back as to saying yes. Then there was the nasty infection Paige battled three weeks ago that landed her on the jet still they weren't sure if the infection I had caused it even though she became septic weeks later. The Dr even said the girls are unpredictable at times doing great then the next minute requiring high levels of support. So all in all the steroids to help them won't be used until the last resort so to speak. Im doing my best I guess the girls just aren't ready and their lungs are very sick I am just begging god to let them heal and wean off the vent and onto CPAP.

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congrats on your Lo's. The rule of thumb is they generally come home around your due date. My son a 25 weeker came home 5 days after my due date. We spent 3.5 months in NICU with PDA surgery @ 31 weeks. He came off the vent permanently 3 days after the surgery it was really a turning point for us. I know NICU is difficult but try to stay strong, talk to teh counsellor if need be. I know i ca=ertainly did when i felt i was loosing my mind which was almost every day.

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Angelinasgirls5, ah yes infections can cause some back tracking. My daughter had one in the NICU even after she had been progressing quite well. Thankfully she only had one as that was scary enough.

Northern Virginia! I am in that region as well. Do you know about Preemies Today (www.PreemiesToday.com)? They are a fabulous support group and I was on their board a number of years ago. If you connect with them and happen to talk to their president, Mary Beth Hazelgrove, please tell her I sent you. They have an online support forum and I believe, phone support. I would strongly suggest you connect with them if you haven't already because they have many a parent who has been in your exact shoes.

Respectfully,
Deb

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Thank you I will be sure to do so. Thank you also to all of the responses it means a million to me.

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It is true those infections are a major setback. My twin daughters were born July 2009 at 28 weeks. One weighed 1 lb, 9 oz the other 2 lbs, 2 oz. My smaller one was on the conventional vent for nearly 4 weeks which isn't too bad. However, she struggled to get off CPAP and later cannula. She was very close to come off o2 completely around 35 weeks or so and went septic because of an infection in her PICC line. She ended up coming home on o2 for six months. However, today she is a healthy 3 year old girl. I am sorry about your daughters. Have they talked about using steroids yet to get them off? Mine were both on caffeine for quite some time. Mine came home a week after their due date. Please keep us updated. The NICU is a long and terrifying journey for us parents. I will never forget my time there with my girls. Please reach out to us for support. We understand and are here.

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The Dr try'd to extubate Paige yesterday afternoon and poor Paige just laid there not knowing what to do. She did not try to breathe on her own not once so she had to be re intubated, the Respitory therapist gave her a loading dose during the attempt . The Dr told me she will be placed on caffeine, I will know more about their plan and next attempt date later this morning.

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I'm sorry that things have been so frustrating and stressful for you. My son was a 24.5 weeker so I am very familiar with everything that you are going through.

Have your daughters ever been evaluated for pulmonary hypertension? Pulmonary hypertension occurs when too much pressure builds in the blood vessels between the lungs and heart. This condition is not uncommon in ventilated preemies with chronic lung disease. In my son's case, the fact that he had this condition impacted his ability to be able to breathe without the ventilator. PH can sometimes be seen through an echocardiogram. A blood test called BNP is also very reliable marker, although it is a fairly new test for PH and some hospitals don't know about it or use it. If your daughters haven't been evaluated for PH, I'd push for it. PH can worsen when respiratory support is weaned so you will need to be mindful if, in fact, it is present.

I hope that the process goes more quickly for both of you girls. I don't want to be a cloud of doom, but I do want to caution that the "home by the baby's due date" standard that applies to most preemies may not apply to babies with severe chronic lung disease. I know that my son was hospitalized for a much longer time. I found myself a crazed mess when he was nearing his due date because it was clear he was nowhere close to coming home. I wished that someone had given me a more realistic time frame. Of course, I say all of this with the hope that your girls will turn a corner soon and come home as close to their due date as possible. Every preemie's journey is so unique... and the potential for amazing turn arounds and speedy healing is always there.

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Hang in there. Our daughter was a 23+0 weeker...on the vent for 13 weeks without any time off. She had so many infections during that time, I lost count. There was pneumonia, gram pos, gram neg, 70K WBC at birth, staph, etc. But once off the vent, she did great and is totally normal now. We had a lot of set backs frrom the infections too, but it can be ok in the long run, so I hope that helps to know. Our daughter even got RSV just one week after getting off the vent and did fine through that. Hang in there and good luck!

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Hii Angelina, congratulations on ur Angels it's a huge blessing. With the oxygen situation, just be patient and always keep in mind if they need it it's best for them to have the vent. My son was born at 25 weeks he was born 1 pound 14 ounces he was on the vent for longer than expected by the doctors they tried to extubevate him in 4 different occasion and he fail every one of them he just wasn't ready. Ofcourse as his parents I wanted him off but i finally realize that he couldn't gain weight if he was using up all his calories trying to breath, the doctor finally told us he needed to have a PDA surgery and I cried but he had the surgery and week later he was off the vent then he went to the Cpap then he came home weighting 4 pounds 5 ounces ;) he came home on .1 oxygen nasal canula, he came home january 2012 and was off the oxygen aprill 2012 he has never had any incedents off not breathing ever since we waited until he was ready so he would never have to have oxygen given to him. Patience is gonna be my advise because once they are ready they let you know ;) be patient I know it's hard and scary but this is our journey we are blessed just to have them. Please keep us inform of ur angels you will be in my family prayers.

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