So ... tell me about your NICU experience

[Kara]

This pregnancy has been quite the rollercoaster ride already, so I guess I shouldn't be surprised that we're now facing a premature birth and a stay in the NICU.

Background: I'm just about 33 weeks with baby #4. It's a boy and he has Down syndrome and a small to moderate heart defect (VSD.) I also have polyhydramnios (excess amniotic fluid) and there is increasing resistance in the umbilical cord, which means he's not getting the blood flow he needs. All of these signs are pointing to an early delivery, according to my perinatologist. I'm getting the steroid shots for lung maturity because the doctor is predicting a 50/50 chance of having to induce labor or do a c/s, primarily because the blood flow issue is worsening.

I know we're at a pretty good place in terms of gestation, but there are so many unknowns that could throw a wrench in things, and we might be looking at an extended stay in the NICU.

So ... tell me about your experience. What tips do you have for someone who is new to all of this, plus trying to balance three other kids at home?

Kara

[Jenn Barrette]

I don't have any experience, but I wanted to offer a hug!

[MissKim]

My BIL had twin boys born at 34 weeks. One was in NICU for a few days and then moved to the step-down unit (Special Care, I think?) for a few weeks. They were great in there, excellent security, room seemed comfortable for the family. The nurses were full of information and so kind and caring. Hopefully you'll get more info from someone with direct experience.

My blessings to you and your family.

[cindys732003]

Gosh Kara, I had no idea you were going through all of that. I have no experience with NICU, but just wanted to offer you some hugs!!

[NeverendingJen]

I have no personal experience, but I wanted to offer you hugs. I do know one thing I have read on blogs that a lot of moms of multiples do is leave a disposable camera or cheap digital with the baby so that nurses can take photos of baby when you aren't there, so you can be there in pictures if nothing else.

[ayaandjudah]

Kara,

I don't have personal experience but have lived through three NICU stays with my SIL. My nephew was born at 34 weeks and was in the NICU for about 3 weeks, my older niece born at 31 weeks and was there for 9 weeks and my newest niece was born at 35 weeks but incredibly small (2lbs 7 ounces) and was there for 6 weeks.

The nurses in the NICUs are absolutely wonderful. They're the most skilled nurses around. You can go in an out of the NICU at any time and they will answer calls 24 hours a day. Utilize them.

My nephew was thought to be a downs baby because he has no nasal bone. My SIL refused an amnio so we were all just waiting. He had one other marker too, I can't remember which one. He does not have downs though.

Much love and hugs to you.

[kim21673]

We had two NICU babies! Our first stay was a total surprise. Yes, three of our boys were born at 36 weeks, but they were all a healthy birthweight. It goes to show birthweight doesn't matter. Our biggest boy was 9 lbs 2 ozs and spent 8 days there for immature lungs. I won't lie...the NICU was scary and stressful but the nurses and doctors were awesome! Our third boy was 7 lbs 11.5 ozs and was born at 36 weeks too...he was in for 5 days for immature lungs and feeding issues. Our second NICU stay was more relaxing...well, as relaxing as it could be. LOL

#1 was in for 8 days...4 weeks premature, 9 lbs 2 ozs...he didn't get admitted until several hours after he was born. We noticed his legs turning purple. He was tested for a blood disorder and had to be treated for it b/c it took 72 hours for the results to come back and he would have died IF he had it and wasn't immediately treated. Once he was in, he would set off the machines while he fed and developed jaundice. They had to bring in better machines and they did a 72 hour Fact Study test on him to make sure he WAS breathing....turns out he is a shallow breather. It was a VERY tramatic time for us b/c it was a complete shock that he was admitted...I mean, he was 9 lbs 2 ozs...the biggest premature baby ever to land in the NICU at our hospital. Once we got over the shock and started asking tons of questions about further testing, he came home.

#2 Born at 36 weeks, 7 lbs 11.5 ozs...pass meconium in utero, took a breath and cried during birth before they had a chance to suction his mouth...had to have chest xays and be monitored and treated for possible infection, wasn't feeding so he needed a feeding tube for a few days, developed jaundice...spent 5 days in the NICU

TIPS
Remember to not overdo it. You just had a baby and want to spent as much time there as possible but you have to take care of yourself and your other kids. You NEED rest. If your little guy has to stay, he will be in good hands...go home and rest at night and spend time with the other kiddos!!!

Can someone come and help out with the other kids? My mom came up when #3 was born and she stayed with #1 and #2. They were allowed to come up to the hospital for short visits but they stayed at home most of the time. DH went home around lunch time but I stayed at the hospital.

ASK QUESTIONS: Don't be afraid to ask why and what. We were so blindsighted by our first NICU baby's stay that we didn't ask a whole lot of questions until day 5. With our next NICU stay we asked questions from the second he was taken into the NICU for chest xays.

Make sure you pack a snack bag and bring your water!! I can't remember if we were allowed to snack in the NICU but we took a bag every day with us and could just go to the waiting room to grab a bite. Our hospital is 20 minutes away and I really didn't want to go that far to grab a bite and hospital food does get expensive after a while!!

Good luck Kara!! I hope you don't have to experience the NICU but if you do, remember that your child is in great hands!!!!

[emmasmommy]

Kim gave some really good advice

emma was born at 35 weeks and we had a 5 day NICU stay. I opted to stay in the hospital until she was released because I didn't have any other kids at home at the time.

Darik and I alternates staying in the NICU w her and sleeping in the room. it still all is a big blur, but the security, the caring nurses, and the way the drs relayed us info so quickly was what kept us going. I dont know the NICU that you are using but that seems like a pretty universal thing for NICUs.

good luck and you'll do awesome!!

[mrspotts]

My first daughter was actually born after her due date but had to go to the NICU. She swallowed meconium and also went into sugar shock. She was there for five days, and was also the biggest baby they'd ever had in there weighing in at 9.3 lbs!

Kim's advice was excellent! The one thing I want to add and I don't know if this a factor for you, but I think you should be warned. I was breast feeding my daughter and pumping milk for her so I didn't have to go in at night to feed her. The nurses swore that they wouldn't give her formula. Turns out they did because they left out 16 bottles of milk and it spoiled. All that work and my baby didn't get it! I've heard that this is quite a common occurrence because the nurses get so busy. So if this is something you are going to attempt I would highly suggest you watch the nurses put the milk in the fridge.

Good luck with your hospital stay and with your little one!

[rach3975]

((Hugs)) I know you've mentioned a difficult pregnancy, but I hadn't heard that your baby has Downs Syndrome and a heart defect. I hope everything goes well and you aren't facing a long NICU stay!

[Lyd]

Kaylin was in the Intermediate nursery for a week (a step down from NICU). The nurses are awesome, and the peds were great to keep us in the loop about how she was doing. I think you've received great advice in this thread so I'll just offer more hugs. Hang in there sweetie!

[Andrea Gourley]

Wow Kara, you have so much going on at the moment. I have no experience other than to send a hug and hope it all goes smoothly for you and your little man

[kscwgirl]

Just wanted to give you some hugs and love Kara!

[hollyxann]

No advice but I just wanted to offer a hug and some love.

[Julie Billingsley]

just wanted to extend a hug Kara (hugs)

[HeatherB]

Looks like you have lots of good advice here already!

Don't be afraid to ask questions and become your baby's advocate. If your baby is expected to be in the NICU for an extended period, there are some great books you can get that will help explain a lot of what is going on. This is the one I read cover to cover: The Premature Baby Book by Drs. Sears

My 2nd child was born at 28 weeks, and his early birth was completely unexpected. He was blue when he was born, couldn't breath, and had an apgar score of 1. He stayed in the NICU for about 73 days. Today he is a happy, healthy, and rambunctious 6 year old. NICU medical care is amazing!

Keeping my oldest in daycare really made all the difference. I knew he was well cared for, and I could spend the whole day in the NICU without feeling guilty.

[mariewilcox]

Hugs to you Kara - I hope everything turns out as well as it can!

When I was pregnant with Cheyanne my water broke unexpectedly at 30 weeks. They waited 24 hours to induce me so they could get 2 steroid shots in for her lungs. They started induction at 6:30 a.m. and she was born at 7:34 a.m. weighing 3 pounds and 4 ounces. She spent 3 weeks in the NICU, which I was told was amazing. We had been prepared beforehand by the nursing staff that she could be there up to 8-10 weeks.

One thing to be prepared for is the delivery itself. Since they knew she would be heading to the NICU as soon as she was born they were prepared - I'm talking no less than 10 medical staff in my room! I was rather surprised because it wasn't the slow-paced, laid back delivery I had with my son! They had nurses, doctors from neonatal, my OB, and who knows what other staff. I didn't get to see her after she was born and DH didn't get to cut the cord. She was born and they immediately cut the cord and whisked her to the other side of the room to work on her (blue baby, cord wrapped around her neck 3 times and once around her feet). I finally did see her about 10 hours later when they took me into the NICU for the first time.

The NICU can be scary BUT I felt reassured more than anything (then again I have the type of personality that doesn't freak out easily). You just have to remember that it is THE BEST place for your baby and he is going to get the best care possible there.

The NICU Cheyanne was in was very laid back. DH and I were allowed to come and go as we pleased 24 hours a day. I put my milk in the fridge myself in a bin marked specifically with Cheyanne's name. We were taught the "scrub in" procedure and we had to stop and do that before going any further into the NICU. The nurses are wonderful and will guide you in holding/touching your preemie, etc.

Some scary things to know are that they are hooked up of course to monitors - one is for bradyarrhythmias (slowing/stopping of the heart) - when they go off it is scary but you will get used to it (Thankfully Cheyanne only had 1 in 3 weeks but the other babies went off all the time). Be prepared for feeding tubes and the fact that your preemie probably won't be able to suck for at least several days. Be prepared that your preemie might not take to nursing at all, but you can pump so he gets your milk. They have a special pacifier that they use to try to teach the preemie to suck (Cheyanne hated it and never took it ).

I had Christopher at home but he was older (13) so I worked out a schedule where I would go to the hospital after he left for school and would feed her breakfast (once she learned to take a little mini bottle - 1 ounce!). I would stay until lunch and DH would meet me there at lunch and stay a while. I then would go home and rest. After supper DH and I went up together to spend some time at night. I always called the nurse at 10 p.m. to get an update. Your first instinct will be to stay with the baby all the time but with other children it's hard and your baby will be just fine without you there 24/7 - you need to take care of yourself for when he comes home! They finally let her go home when she had reached 4 pounds 3 ounces and hadn't had a brady in 48 hours. She could suck and held her body temp.

Our NICU allowed us to bring in things to tape on her isolette - picture of her brother, a decorated name tag (scrappy style ), and I brought in a music box to play.

Gah! Sorry it got so long, but these are some of the little things I could think of... most of all keep the faith and learn what you can while he is in the NICU - the nurses are an invaluable source of information. Cheyanne is now almost 12 and is doing great.

[Mye]

Oh Kara - I know the feeling but first, let me give you a hug sweetie.

I gave birth to my twins prematurely at 31 weeks. My doctor anticipated a premature delivery so she gave me steroids when i was at 27 weeks. That gave us ample time to get their lungs mature (at least). However, my girls still stayed in NICU for a month - they don't know how to suck so they had to be fed via OGT (oral gastric tube). Plus, they were tiny at 3.3lbs and needs to gain weight first. It pained me to go home and leave my girls in the hospital but like Kim said "they will be taken cared of well in there". I saw how amazing my neonatologist is and the NICU nurses. I visit them every day for at least a few hours just so I can see and hug them. A mother's warmth and love is very important to premies so it's important to give it to them.

And like Kim said, take care of yourself too because you still have other kids. Make sure to ask for help from relatives so someone can look after your other kids. And yes, don't be afraid to ask.

Today, my girls are 6 years old, happy, healthy (Hey, Heather we gave birth the same year!). But the after effect on me is that I became an overprotective, paranoid momma. Something I still need to overcome.

[ayaandjudah]

Kara,

One of my dear friends has a gorgeous boy with Down Syndrome. They've been through a lot including heart surgeries. I know she'd love to talk to you and guide you through what to expect. I can ask her, if you're interested.

HUGS

[navaja77]

HUGS!!

I had my DD at 34 weeks because my water broke early. It was likely preeclampsia that caused the early arrival. She wasn't breathing on her own so we had to stay in the NICU. I personally had a great experience with the staff and facility even though I didn't sleep much and was so tired. The babies are all in private rooms called "womb rooms". I was under the impression that all NICU were that way but after we left, I realized that our hospital was fairly new in this concept. My DD did great. She was larger size that the average NICU baby. The only reason they were keeping her was because she wasn't breathing on her own then we had to go through this step process before we could take her home.

[WendyBird]

Hugs again Kara!

My DS Tyler was born unexpectedly at 31 weeks due to placental abruption. He was 4 lbs 1 oz and was in distress during delivery. He was immediately whisked away to the NICU and spent 30 days there. Luckily he didn't have any major complications - he spent about 12 hours on a respirator, got jaundiced, and was fed through an NG tube for 3 weeks, but his main issues were gaining weight and maintaining his body temp.

I was barely 20 years old and newly single (my ex and I broke up before we knew I was pregnant) - and I didn't even know I was pregnant until 22 weeks - so I was still adjusting to the fact that I was having a baby and be a single mom at that.

Kim gave you great advice. Don't be afraid to accept help. If you have family and friends that can stay with the kids and help around the house, don't feel guilty about letting them. And definitely take care of yourself! Don't be afraid to ask questions, and the nurses are definitely available 24/7. I would wake up in the middle of the night worrying so I'd call the NICU nurses and they'd give me an update on his last feeding, weigh in, etc...

I think having this warning - knowing that a NICU stay is likely to be in your futures is a good thing - you can prepare. You may not see him much for the first few hours and you will probably not be able to hold him immediately - Tyler was 2 days old before I got to hold him and even then it was only for a little while. Do see if they support Kangaroo Care - I didn't know anything about it until afterwards and would have loved some skin to skin time with him once he was stable.

I know yours is a different situation, but you would never know that my Tyler was a NICU baby - it took him almost 2 years to catch up developmentally, but now he is a pretty typical 13 year old - he is in gifted classes, plays trombone in Jazz Band at school, and is now taller than me!

[Penny Springmann]

Kara, keeping you in my prayers! (((HUGS)))

[amymom24]

I had twins at 31 weeks and they were both in the NICU for 7 weeks. The NICU staff is great and you won't have to worry about your baby at all! You can even call in the middle of the night to check in if you get up to pump.

In addition to the other great tips you've received, here's some more:
Are you a member of a church? If so, make use of help you can find there. If not, tap into any local community/family resources you have now and call them up and ask for help for when baby comes. I know it's hard to do, but you must do it for your own health! We received meals 2-3 times a week for a few months and it was a HUGE help. My sister also came once and a while to clean my house for me. Anything like that - if someone offers, don't say no!

Better yet, ask a friend you trust to be you "coordinator" so that she can deal with any offers of help that come through, and she can schedule meal drop offs and other help schedules. This way you're only communicating with one person as opposed to taking all kinds of calls/voicemails in your very minimal spare time.

All the best as you get through this. It will be tough, but you'll be a better person for it! Hopefully you'll get a chance to pay it forward to someone else in your life in the future

[WendyBird]

Originally Posted by amymom24

Better yet, ask a friend you trust to be you "coordinator" so that she can deal with any offers of help that come through, and she can schedule meal drop offs and other help schedules. This way you're only communicating with one person as opposed to taking all kinds of calls/voicemails in your very minimal spare time.

That is a great idea!

[Kara]

This is all great advice. Thank you so much. We're getting tons of support from our family and friends, including our church. And I'm so thankful for all of your hugs and prayers, too! I'm being monitored very closely right now -- 3 ultrasounds this week alone! - and am grateful for that, too. Hopefully, we'll be able to hold off on delivery for a few weeks, but I know that even if it happens sooner than later, we'll get through it.

[TeriBeary]

My son was in the nursery (didn't have a NICU) for 2 weeks after he was born. Since he was my first, I didn't have to juggle other children, but I would say to accept help from people who offer. I was on bedrest with my second for 7 weeks and had to have someone with me all the time because I had an active 2yo whom I couldn't chase after.

I'll be thinking of you, your family and your new little boy. I hope things go smoother than planned and you will all be home together soon.

[color of my heart]

came to offer a hug (:

my aunt and uncle had twins three years ago, and they were in the NICU for over a month, maybe close to six weeks. they were due in may, but came in february. they had the best nurses, and were so well taken care of. NICU nurses tend to be protective of their babies, my mom's an ER nurse and wants to do maternity. she always says that the nurses in the NICU are some of the best around. also, depending on what hospital you're at, they probably will have some kind of support for families. it all depends on where. i know that my aunt and uncle lived close by to the hospital, but accommodations could be found for families who had traveled. i'd ask the hospital, you never know what you'll find out.

[pomi]

Thinking of you Kara and sending hugs!

A friend of mine had her twins at 28 week, they were only a little over 2 lbs. She said the skin to skin contact with the baby (when it was possible) made miracles.

[julifish]

Kara - My hugs and prayers go out to you with so much going on right now! You got awesome advice here. I think the fact that you are asking for advice shows what a great mom you are. I'm keeping you in my thoughts and prayers that all will be well.

[nikkiARNGwife]

Avery was a preemie at 35 weeks but we were very lucky..he was big.. 6lbs 7oz and thankfully we had no problems at birth more serious than jaundice...although we did have to have him readmitted for that but not in the NICU.

I'm praying for you and that sweet little one every day Kara! He is going to be such a blessing I know it!

[AmberK]

All of my kids were in the NICU so I have TONS of experience. My first pregnancy was a twin pregnancy and the boys were born at 25 weeks but due to their size they called them 26 weekers. Colin was 1 lb 13 oz when he was born and Drew was 1 lb 11 oz. Apparently for twin boys at that gestation they were big.

I had NO IDEA anything was wrong until I had a little bit of blood when I went to the bathroom. Went to the hospital and was 10 cm dialated and about an hour later both boys were born via emergency c-section. They were transferred to another hospital that had a lever 4 NICU but that meant that I only got to see them for about 30 seconds after they were born and before they sent them to the other hospital.

Unfortunately, 3 days later Colin developed a SEVERE brain bleed (Grade 4 IVH for the technical term) and after many prayers and talks with the doctor we made the decision to take him off life support. (I was transferred to the hospital the boys were at to be with them when Colin took a turn for the worse.) The doctors and NICU nurses were all so sweet with us and made all accomodations for us during that time. I asked for Colin to be put in the isolette next to his brother so I could have a picture of them together and that it one of my most cherished pictures.

Drew spent 109 days in the NICU. Honestly, we had NO EARTHLY idea what COULD have happened with him when we were in the moment and I think that probably saved my sanity. It wasn't until AFTER we got him home and I sat down to really think about how close we were to losing him to that I realized the magnitude of our experience there. The first piece of advice we were given is to realize that with a micropreemie like Drew was for a while it would be "1 step forward, 2 steps back". He would do something incredible like breathing OVER the ventilator and then them stepping him down to CPAP machine only for him to stop breathing and then having to go back on the vent. He did that while I was watching him and saw his skin turn grey and lips turn blue and it scared me to death.

Our NICU didn't have 24 hour access because during shift change they closed the NICU down so the nurses could give report and that was confidential information. So if they ask you to leave dont take it personally even though sometimes its so hard. I often felt like "This is MY child and I have every right to be here with him" but I would just step out and go to the cafeteria and grab something to eat and then come back and be with him when the NICU opened back up.

Also, if you have a nurse that you don't get along with or you don't think is giving your child the proper care- DONT be afraid to talk to the charge nurse. If your child is going to be in the NICU for a long time then you need to have a good rapport with your nurse and you need to know that you can trust your nurse.

ASK QUESTIONS. If the doctor wants to do a procedure ask him to explain what they are doing in terms that you can understand. Drew had to go through so many procedures and I wanted to know just exactly what they were doing to my child. I also wanted to be there while they were doing it too. He had to be sedated for an MRI and I wasn't allowed in the MRI room but I was there when they left the NICU to take him and was there waiting for him when he got back.

Our 2nd NICU experience was MUCH different- Ryan was born at 36 weeks at 7 lb 12 oz but I had chorioamnionitis (an infection in my amniotic fluid while he was in utero) and it passed from me to him and he wound up with meningitis because of it. He stayed in the NICU for 3 weeks while he was given 3 different anti-biotics to get hte meningits cleared up. It was a less stressful time for us because Ryan wasn't as sick as Drew but I still had difficulty because the NICU wouldn't allow siblings younger than 16 to be in there. So I had A LOT of help from friends and church family who would watch Drew so I could go up to the NICU during the day to be with Ryan. (The NICU was about 30 mins away from where we lived) Then at night the whole family would go up there and DH and I would switch off going in and seeing Ryan while the other stayed outside with drew. That was probably the hardest thing of all the 2nd time around.

Please feel free to email me if you want to talk- amber at kazmir dot net
I know the NICU is scary and normally a child in the NICU at 33 weeks is not as serious as prior to 30 weeks gestation. My good friend is a NICU nurse and she said that at 30 weeks usually those kids are just "feeder-growers" meaning they dont USUALLY have any serious issues other than needing to learn to suck to be able to feed properly and gain weight. But I know with Downs and the other issues its going to be different for you. Wanted to wish you luck with everything.

[nsrush83]

I also had a child at 28 weeks...we spent a total 3 months in the NICU. The main piece of advice I have it take it day by day, take lots of pictures and start a journal. Writing things down helped me SO much. He is not a happyl healthy 5 year old..
I also had a twin nieces born at 27 weeks, one being still born..If you need any thing, feel free to ask!

[lovely1m]

I just wanted to give my support. While I had preterm labor and a placenta aburption, I was blessed to be able to hold out until 37 weeks and have a good sized baby who didn't need a NICU stay. Even the nurses during labor were great, I didn't even know the baby and I were having issues during labor until afterwords. Just trust your instincts with the nurses. Hugs!

[newfiemountiewife]

Kara, I have no advice, but I just wanted to send you a big hug!

[nesser1981]

No advice Kara, just lots of prayers for you guys! Hope the little man decides to stay put a little longer.

[Sherri Tierney]

Many of you have been through so much with your babies. You are all amazing!

No advice from me, but lots of thoughts and prayers, Kara.

I had a 20 week stillborn (incompetent cervix), one at 36 weeks and one at 37 weeks. Declan had a true knot in the cord and had the cord around his neck several times as well as mechonium in the fluid but I didn't know any of that until the day after he was born. Its scary to think about what could have happened but he was perfectly healthy and alert with apgars at 9,9. I can't imagine what some of you have went through, the rollercoaster ride and the uncertainty. It is awesome of you all to share your stories and be so supportive!

[abm234]

I have had 2 babies in the NICU and one baby in the "Special Care" nursery so unfortunately I've been there. Everybody left you great advice. The only thing I have to add is JOURNAL. Being the fabulous scrapper you are you had probably already thought of this. I did not journal for any of my kids and although at the time if feels like you will remember it all you won't! I barely remember anything!

I think if I remember right, on one of your previous posts I posted the poem "Welcome to Holland". I'm posting it again because I think its fabulous!



WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

[YepBrook]

Kara... HUGS!!! I have no advice to offer. Just hugs.