Any parents of 23-24 wk micro preemies

Any advice from any parent on how to deal with having babies in the NICU? Also can any parent let me know who long their micro preemie stayed in the NICU to give me a time line? thanks

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Hello!

Thanks for posting your response regarding my daughter Savana. Savana was 24 weeks and 5 days and she was born May 1, 2008 and she weighed only 14 ounces at birth! Savana is still in the hospital to this day. Please keep in mind as you go through this journey that EVERY preemie baby is different. In the beginning I used to compare every baby to Savana but I have learned since then to not do that it only puts more pressure on me.

But, what I will say is to pay close attention to everything the doctors say that your baby has. Find out the condition of your baby's heart, lungs and brain these are major and will definitely play a major factor in how long your baby stays in the hopital. And then keep in mind that the very fact that your babies are in the hospital will make the chances of them catching an infection very high.

The reason Savana has been on the hospital so long is because she was born with very immature lungs. Most of her lungs are stiff which means they can't work on their own and she will need to grow new lungs which will happen over the next few years. In the meantime Savana has a trach to assist her in breathing on a longer term as well as a G-Button because she has never been able to take a bottle because of her lung issues. Savana has broncho pulmanary dysplasia (BPD) which is basically chronic lung disease in infants. Savana's case of BPD is severe. Thankfully Savana has no other problems with her major organs her heart and brain are both in good shape...Thank God! Savana will eventually come home but she will come home on a vent and with a home health nurse until her lungs are strong enough for her to breath on her own.

Your situation will more than likely be completely different than what I am experiencing with Savana even though we both had micro preemies. I forgot to mention that Savana weighs about 15lbs now so just know that your little ones will get healthy and strong before you know it!

I am sure there is plenty that I could and would be happy to share with you about my journey with Savana. Please feel free to contact me if you ever need a shoulder of just have a question. This experience will test your faith but you will find that you are stronger than you could have ever imagined!!!

God Bless You & Your Family!
14ozMiracle (alice)
Laydehoward@aol.com

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Hang in there, Braelyn was born 11/5/07 and spent 6 months 5 days 7 hours and 41 minutes in the NCIU. He was born at 25 weeks but was consider 21 to 22 weeks in size. The cord was working only at 47% of what it was suppose to 3 weeks prior to the emergency c-section. We were given a ZERO% chance of survival inside or out prior to birth and stayed at only a 3% chance for about the first 2 1/2 months. As the previous post stated each journey is a differet one, with similar situations at different times. He did have a PDA fixed at 22 days and double hernia surgery just 3 weeks prior to coming home. We were lucky not to have any brain bleeds or pneumonias. Braelyn spent almost 3 months on the vent and continues at home on an 1/8 liter of oxygen. He does have bronchopulmonary dysplasia and residual pulmonary hypertension. He also has some oral aversion and reflux which has made eating orally at this point difficult to say the least. The oxygen he receives today is more for his heart than it is for his lungs. If I sat here and typed everything that went right and everything that went wrong during our hospital stay it would take a long time to get thru. Your NICU will most likely be a rollercoaster ride with many twists and turns and will at times seem like it will never end. My advice would be (and this was given to us by a family friend when we questioned how much should we allow in saving his life) is "if the doctors say there is something they can do, let them, if it is not meant to be, it won't matter what is done" I don't by any means for that to sound harsh, for us it was the reality of the situation. It broke our hearts to see this tiny little baby being poked everyday. Take each day as it comes and try not to worry about the things they tell you "could" happen. Focus on what is happening as it happens. The doctors in trying to be honest with you are more often going to give you the worse case senarios.

We have a site set up that follows braelyn's journey and we would be honored to share it with you.

www.braelyn.stevryn.com

Braelyn has been home now since 5/9/08, he is 12 pounds 11 ounces and started crawling on 1/1/09. He is a happy baby and truly loves life. He has problems with reflux and has never really taken a bottle or a pacifier. He has a g-tube for most all of his nutritional needs.

This site is filled with those who can offer so much advice. We didn't find this site until after we brought braelyn home and I have found that although we are strangers in one sense we are bonded by a journey thru prematurity and many open thier hearts, ears and shoulders to lean on in times of trouble or joy. And the advice I've seen given has truly helped.

We will watch for updates and be here if needed.

HUGS to you and God Bless you and your family during this joyus but difficult time.

llcbc (Lorrie)

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Hi!

The NICU is a tough road to travel with many ups and downs along the way.

We had 24 week and 5 day triplets, born on Oct 20 2008. Overall, we've been very lucky. Matthew was 1 pound 11, Madison was 1 pound 8, and David was 1 pound 9.

David was baby "C" and has had the most trouble. He spend nearly 11 weeks on the ventilator and has BPD and stage 2-3 ROP.

Matthew came home this past Wednesday on day 79 in the NICU. He came home at 36 weeks gestational... Madison should come home in a week or two, and David may take another 6-8 weeks.

The one thing to ALWAYS keep in mind... Every child is different and if you're having a bad day, it'll pass. We spent so much time wondering why David was doing so poorly, when in reality, Madison and Matthew were just far exceeding expectations. It took us a long time to realize that, and to not leave the NICU upset.

You have many friends in the Internet world, and don't be afraid to ask for help or vent. You also have a great resource in other families in the NICU. We've become friends with a few different families, and it's very nice to be able to talk to other people who understand what you're going through.

Good luck!

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Hi,
I had triplets on Nov 29 at 24weeks.. we lost our son, Noah, but our two girls Sarah and Lauren are doing ok. They are now 6 weeks/30weeks gest. All I can say, is that the NICU experience is filled with alot of lows and highs. I am only 6 weeks into it and some days i just want to cry and cry. So far both girls have lung issues and they are on ventilators. Sarah is doing good beyond that, she is up to full feeds and is steadily gaining weight. Lauren has had a difficult path, she tore a hole in her intestine about a week after being born. It has healed, but continues to have issues with it. Now she has an infection caused by the vetilator and also is having low platelet counts and has been getting transfused with blood and platelets.
Both girls have had no brain bleeds and no heart problems so that is great.

I try to take each day as it comes, knowing in the back of my head that there are going to be bad days and good days. The NICU that they are in have wonderful doctors and wonderful nurses. I understand what you are going through and am here if you want to talk.

I wish your little one all the best.

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My son, Dale, was born at 24w6d. We were told that he was about a week behind in growth (smaller than expected). He weighed only 1 pound, 4 ounces at birth. He spent 135 days in the hospital (May 25 - Oct 6, 2008). We were told in the beginning that it would be a roller coaster ride, and we didn't quite believe it until we really started experiencing it. A friend of mine said it best, "You were expecting Disneyland, but you got Magic Mountain." (For those of you who don't know the parks - Magic Mountain has much faster and scarier rides than Disneyland.)

We had a great primary team of nurses and doctors. I would definitely recommend building a primary team. Choose nurses and doctors that you are comfortable with and that you get along with. They will become very familiar with your baby, be able to recognize his/her likes and dislikes, and they will know his medical history inside and out. In our case, our son also became very comfortable with his primary nurses. It always seemed like his better days were the days when his primaries were taking care of him.

It is also very important to talk about what you are going through. Talk to your partner, parents, and close friends. Although they will never truly know the pain and fear you are experiencing, it will help you to talk about it. I talked openly with my husband all the time and it really made our relationship stronger.

Don't be afraid to cry. I broke down several times in the hospital, usually out of complete fear. You are human - don't be ashamed of your emotions.

Anyhow, I am sending prayers and thoughts your way. I hope that the NICU stay is as smooth and pain-free as possible.

Please keep us updated on your baby's progress.

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Our twins were born at 23 weeks 4 days gestation (which we know precisely because they were IVF babies). We lost Olivia (Twin B) at 18 days but Hallie is now 31 months old and generally doing well. She spent 121 days in the NICU and came home on oxygen, which she lost after the winter. She only had a small (IVH 1) left brain bleed but her lung development was awful and she spent a few weeks on the oscillator, a total of 9.5 weeks ventilated, and had a PIE (collapsed lung) early on. She had systemic regular and yeast infections and was on a lot of antibiotics and an antifungicidal drug through IV for the longest time in the NICU. She never got NEC (thank God) but did have to have her PDA surgically repaired. She somehow barely avoided laser surgery for ROP. Two years plus down the road, she has fabulous eyesight and great hearing. She crawled at 8 months corrected and walked at 13 months corrected and sat up on time, too (can't remember how many months). She had wicked reflux and delayed gastric emptying and it turns out that she is allergic and intolerant of a lot of food (including cow milk, soy, eggs, berries, and probably many grains). She also has a paralyzed left vocal cord (fold) and a raspy little voice. She is speech delayed (expressive mostly) and this plus her feeding issues contribute to what her early intervention folks see as a global developmental delay. But we feel like they've overstated her delays a bit; she is super smart (knows the entire alphabet in english and sign and can read the letters and not just sing the song), counts to 20, knows all of her colors, shapes, animals, and the sounds they make and has a great vocabulary---just not a lot of two word phrases. Her left side is weaker than her right and she has low tone in her trunk but can walk, run, and is beginning to jump. She is a lovely child and a total joy. She has been a lot of work to raise, and her medical issues remain chronic, but we are so glad that she is in our lives and feel blessed by her presence every day.

I blog all about her at blogginghallie.blogspot.com if you want to visit and get the full version...

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As you can see from all the posts, every baby is different. My daughter was born at 24w 5d weighing 1lb 6oz. She spent a total of 105 days in the NICU and ended up coming home on O2. She will be 2.5 in two weeks and has done amazingly well for a micro!

Feel free to visit our carepage as I documented her progress each week of our NICU stay. She had the typical ups and downs but thankfully we avoided infections and NEC.

www.carepages.com
charlottesweb

Melissa
http://pregnanacyafterpreemie.blogspot.com

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My son, Owen, was born at 24 weeks 5/7 days and weighed 1 lb 12 oz. He was septic pretty much immediately after birth. He was on the vent for right at 7 weeks (he switched back and forth from oscillating to conventional several times). He had a Grade II IVH, Stage 2 ROP, PDA surgery, multiple lung collapses, and many more complications. He was released without oxygen after 111 days in the NICU.

He will turn 4 in 11 days. He's still a bit on the small side, but for the most part is a typical soon to be four year old. He loves the Wiggles, his dog, playing with balls, and chasing after his big brother.

I met a friend from the NICU (mother of a 23 weeker, 1 lb 2 oz) about a week ago at a kids play place for lunch. It was really unbelievable to both of us that in four short years the babies that we sat together and cried about for so many hours were now running and playing and you would never know how sick they had been. During those early days, neither of us could have even hoped for so much.

Just a few thoughts for you to help with your stay. Get to know your nurses. They will be a lifeline to you. Do the things you can do for your baby right now. Ask to change diapers, take temperatures, etc. I used to pick up my son's chart every day I walked into the unit. I would flip through it and read the nurses notes, etc. It helped keep me informed and made me feel involved when there wasn't much that I could do for my son. Most importantly, don't be afraid to ask for help. I was severely depressed for the first month or so after my son was born. I don't know what I would have done without ob/gyn and my family.

Take care.

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My daughter Katelyn was born at 25 weeks, but was the equivalent of a 21 weeker due to IUGR. She weighed 15.5 oz and was 11 1/4 inches long. They gave her a 5% chance to live. She just turned 5 in November (look at her picture above). They said she might not walk or talk due to her brain bleeds - Grade I IVH, some small bleeds in various areas, and a severe bleed that destroyed the majority of her left cerebellum. She is walking and talking. Granted she didn't walk until she was 3 (she was very mobile long before that) and didn't start really talking until she was 4. However, when she is older no one is going to be asking her when she started walking and talking. She went through all the usual obstacles that micro preemies go through - PDA ligation, ventilated for 2 months and on O2 until 18 months, NG tube fed, brain bleeds, BPD/CLD, hyper-this, hypo-that, a few seizures, ROP corrected with laser surgery, and the list goes on. She was in the NICU for 159 days and she came home on monitors (apnea and pulse ox), O2, NG tube, nebulizer treatments, severe reflux, and 12 different medications. Our hospital helped us get a medicaid waver (in Virginia it's called the Technology Assistance Waiver - but is also known in other states as the Katy Beckett waiver) that allowed us to receive 16 hour a day nursing care in our home to help take care of Katelyn. Otherwise, she was going to be in the hospital much longer. We learned how to change her NG tube, administer her meds, and everything else we needed to know to take care of her.

I'd say the same as others have said - pay very close attention to what the doctors are telling you. Ask lots of questions and be a strong advocate for your baby. There were several times we thought Katelyn looked sick and when we brought it up, sure enough they found there was a problem. Our doctors were very good about listening to us - probably because I did so much research and learned so much and became very knowledgeable about what was going on. I think that was my way of coping with the situation. Also, when your baby goes home start Early Intervention as soon as possible. Get as many services as you can and if you think your baby needs something that he/she is not getting fight for it. I supplemented the county provided services with private PT and ST as well and still do to this day. It has made all the difference. And remember every baby is different.

Today, at age 5, Katelyn is only taking 1 medication - Prevacid for reflux. The reflux has gotten much better and we are in the process of trying to wean her off. She is still developmentally delayed, but progressing beautifully. I only compare her to herself and as long as she is progressing I'm happy. If you trying comparing them to others in their age group it will just drive you crazy. Katelyn is on the Katelyn Hall development schedule, which is not documented anywhere. We are so proud of her. We call her our million dollar (the cost of her NICU stay) miracle. If you would like to see a video of her now, on Tues Jan 12, the March of Dimes will be posting a video on You Tube and on the MOD website. She is the 2009 National Ambassador for MOD. Also, check out her website: www.katelynsjourney.com.

Ashley

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Hi,

I've had 2 preemies. Our first was born 10 years ago at barely 24 weeks and was with us only a short time. She now watches over her little brother who was born at 24w5 days and spent 112 days in the NICU. He was on the vent for 28 days, had a bilateral Grade II/III IVH with PVL, PDA, Stage 3 ROP, more blood transfusions than I can even count and like others, the list goes on. He came home without O2 but on an NG tube & feeding pump just 5 days after his due date. He was diagnosed with mild cerebral palsy about 6 months ago. Today, he's a very happy 2 year old who I think can eat his weight in goldfish crackers!
As for your stay, like others have posted, do whatever you can for your baby...change diapers, take temp, etc. Don't ever be afraid to ask questions. It's a very long road and some days will be better than others...just take each one as it comes.

I wish you & your family all the best.
cj

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Sahanna is a 24 weeker her daily *photo* N.I.C.U blog is on her website: www.babysahanna.com.

I pray all will be well with your little one. God Bless.

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My daughter was born at 23w and 4days, she weighed 1pound and like all the other parents before me her NICU stay was a definite roller coaster ride. She was in the NICU for 100 days that were filled with all good days and I say that because everyday that I walked in that hospital she was still alive (so everyday was good). She had her typical micro preemie issues PDA, ROP (corrected w/ laser surgery), IVH etc., but through it all she made it! She came home with just a prescription for zantac (reflux) and I am greatful.

I agree with all the parents that every baby is different. I formed a relationship with the doctors, but most of all the nurse's and it made a difference especially in my life. I don't know if you are a believer, but one thing that I know got me through this experience was my relationship with God! He is able to perform miracles and although the medical staff is responsible for nursing my child to health, God is responsible for giving her life!

She is now almost 18 months old (14 months) and she is just beginning to walk. She had a time learning to sit up, but once she got it everything just seemed to happen all at once. I am always proud of her progress,I just have to sit back in amazement at all the things she has learned and goals met. She is a miracle and I thank God daily for allowing me this gift.

God Bless you and your family and if you ever need someone to correspond with please feel free to contact me.

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My twins were born at 28 weeks.
To expand on what has been said in previous posts, do all that you are allowed to for your baby. Change diapers, take temperatures, do kangaroo care, breast nuzzling if you are planning on nursing and if your baby is stable enough and your NICU allows it.
Read and/or talk to your baby often. He or she (they?) knows your voice. Your baby also knows your scent. Ask your NICU if you would be allowed to leave a blanket that you have held for a period of time against your body in the isolette so your baby has your scent nearby always.
Natalie came home after 96 days and Ethan after 122 days. Each baby is so different. I have seen many babies born at an earlier gestational age that didn't have the problems our babies (especially our Ethan) did and go home earlier. And there were 3 babies born around the same time and same gestational age as each other during our NICU stay and two went home and the 3rd (last I knew) was still in with no going home date yet in sight. Hard as it is, try to focus on your baby and not compare to others.

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Thank you very much for responding. Hearing stories like you helps me get through this. As each day goes by, I am now realizing that it is one day closer that my twins will be home. There are in GOD'S hands and that is how I am coping with this. Take care and GOD BLESS

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If I could add one more thing, if you haven't already, start a journal/calendar. I used a calendar to keep track of medical info for my son from about the point of one month on. Every day I recorded his weight and any issues (good or bad) that he was having. Looking back now, I am so grateful I did it. Now that my son is almost four, I remember all the "big" things from his hospital stay, but often refer back to his calendar for everything else.

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Hi we have a older 24 weeker and he is doing wonderful. everything everyone has said what i would of too, but it being awile ago, you have to beilve in your miracles and stay strong for not only yourself but your baby as well. This is a wonderful webite and there are soo many wonderful moms with advice to help out anyone. Hang in there and ask lots of questions about what ever understand. bless you and your littleone, hope your nicu is uneventful.

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I have 2 kids my 1st one is a boy he wa in the NICU for 2 months back in 1996 . I now have a little girl and she is still in the NICU she was born 5-11-09. She was 11 ounces when she was born . As for how long she will stay we really dont know it will all depend on how well she does . I will all the parents the best of luck

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Roller coaster indeed! Beautiful moments, because your child is here, and what is better than that? Very, very difficult and scary moments as well! Our boy was born at 24 wks and 3 days, weighing 1 lbs 5 oz. He had a lot of the typical issues; PDA (resolved with third time meds), BPD (moderate, and pretty much resolved by discharge), yeast and staff infections (really, really scary), anemia, inguinal hernias, reflux, ROP stage 3 (resolved on it's own). Etc. etc. By the time he was starting to get ready to come home, he had kidney failure. Since he only has one kidney (by birht), this was an incredibly scary situation. After two surgeries at hosptial two and three, he finally came home after 4 months in the hospital, two weeks after his due date.

He is now 8 mos, actual 4.5 adjusted and doing really amazingly well! The only problem we are battling at this point in time is reflux and related eating difficulties, although even that seems to be getting better. He is petite, but finally growing steadily since he is on baby foods.

It is hard to say what each child's path will look like. However way it will be, you love your baby more than anything in the world, and that will help you through the ups and downs!

Good luck to you!

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My 24 weeker came home a few days before his dues date, he was in the nicu 102 days. In regards with what to expect, I wish I could say, it really depends on the child and the circumstances. Carter did well in the nicu, no surgeries and bounced back and forth with vent, cpap, nasal canula, had ROP that spontaneouly resolved and he came home on a small amount of O2. See Carter's website if you'd like. I wish you the very best of luck!!

http://www.babysites.com/sites/carterbryce/

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I had 23w5d twins that stayed in the NICU for 124 days. We came home on May 15, 2009. They are going to be 1 yrs. old (Actual age) tomorrow. My son came home with oxygen, pulsox monitor and apnea monitor, we got rid of everything in June. My daughter amazing didn't need anything. They are both growing so fast and doing fantastic. I'd love to hear from other 23 weeker parents out there to share stories and learn from.
Michelle Lucas
mom to Dylan & Amanda
born 23w5d 1lb 7oz and 1lb 2oz

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