NICU prep?

awolfff

We found out today that our baby has a mild coarctation of the aorta and as such, will need to be in the NICU once he's born and possibly require surgery. Really disappointed with the news, but would like to try and wrap my head around this and prepare us as much as possible. That being said, if anyone has any advice with coping/dealing with this, it'd be much appreciated. Any ideas on what we can bring with us that could make any of this easier? How did/would you handle visitors and baby bonding?

btm013

I don't have any advice but I wanted to let you know I am saying prayers. <hugs>

HayesRN13

I think the first step is talking to, and doing a tour to the NICU where LO will be. Each one has different policies and is set up different... Also they should be able to answer any questions at that time...make sure you bring a list of questions so you don't miss anything....it must be scary and I'm sure you have worries, have you spoke to the surgeon who will be doing the procedure?

awolfff

@btm013 thanks so much for your prayers and hugs

@HayesRN13 a tour is a really good idea. We took one of the hospital awhile ago, but didn't really see much of NICU..We haven't spoken to the surgeon. We've been kind of getting mixed information- the specialist told us that surgery is unlikely based on what she saw and is more of a worst case scenario, but our midwife was saying that he will need surgery and that the specialist should have given us a referral and phone number to schedule an appointment. Trying to reach out to the specialist so we can make the appointment and at least understand what the surgery entails and what to expect with the transfer between NICU at our hospital and children's.

HayesRN13

^^ I would try your best to go off of what the specialist said and try not to stress (easier said than done I know) maybe LO won't need it. Def get a NICU tour scheduled so you can get some questions answered and be prepared...Keep us posted too, thoughts and prayers for a heathy baby!

mlindzz

I'm a FTM, so I don't have any experiences to share, although we had a scare a few weeks ago when the doctors believed our LO would be arriving early and requiring a stay at the NICU. It was a lot to wrap our heads and hearts around, so my thoughts and prayers are with you.

My only advice would be to connect with with others in your area who have had experiences in the NICU that your LO will be staying at. Talking to other mothers was very reassuring. Another option would be calling the NICU directly, perhaps the team there or your doctor can give you more information as well.

At our hospital, only 4 guests can be registered to visit, so this helps limits company to only those you want to come by. I think it's a great rule, it help keeps LO's safe while also giving you the space you will need. Hopefully your NICU has something similar, and if not, make rules in advance for yourself and share your intentions with the staff. Others have shared in ither threads that the nursing team will be your best defense at keeping unwanted visitors away. And don't hesitate to be direct with family and friends and let them know that they will hear from you when you are ready for visitors. If you have to choose between feeling guilty because you stepped on the toes of your friends or family, or the guilt of not giving yourself and baby the alone time you need, you will regret much more the latter of the two. So stand your ground

One of my good friends assured me that as difficult as it is to imagine leaving the hospital once baby is born and he/she can't come with you, that once you see the care and concern shown by the NICU staff it becomes possible. I've heard they are some of the most compassionate staff you'll work with, and they're patient and happy to answer questions.

It was also recommended that when people offer to help, you say yes! You'll need the help even if you don't want it, so have a 'go to' list in advance. It will allow concerned and anxious friends and family to feel like they're contributing, while also helping you out. Perhaps suggest freezer meals, a trip to the grocery store, stopping at your house to feed the pets or take them for a walk, or maybe yourself or DH will need someone to get them out of the hospital for a while so asking people to spend some time with yourself or DH for a few hours to get a coffee, etc. I know I would have likely been reaching out to DH's good friends suggesting that they go with him to the gym to go blow off some steam every few days, etc.

Good luck! And be sure that you and your partner keep self-care at the top of your list so you can be the best you can be to take care of your LO once he can return home.

laceymarie3

@awolfff I'm so sorry your little one is going to need to go to the NICU. I worked on a high level NICU for over 4 years and saw many infants with cardiac problems go through the unit. As far as the NICU goes, know that the nurses there are very protective over the infants. They can be intimidating at times to parents, but just ask questions and don't be afraid to ask the same question twice or multiple days in a row. Because there is so much information that gets thrown out in the first days it is often very overwhelming and difficult to process it all. I always recommend using your phone or a pad of paper and writing down questions as they pop into your head, when you are standing at your baby's bedside you won't remember what you wanted to ask. 

Even though they have detected the cardiac issue, most often a surgeon won't make the official call to perform surgery until after delivery and more tests, i.e. ECHO. The last thing they want is to set a family up for a certain plan and then change it, or get an infant into the operating room and realize they need more information. I personally would put more stock in what the specialist said than a midwife, each has their specialty and shouldn't give advice on something that they are not trained in. 

A good resource is usually the NICU social workers, they see many different infants with a wide variety of health issues. They should be able to answer some of your questions about testing, transfers, cardiac surgeons, and might be able to get you connected with the cardiac social worker. 

A lot of families would bring a family picture to put in the crib next to their infant. You will have to ask about stuffed animals, most NICUs don't allow them because of germs. But you can usually bring blankets from home and, depending on what medical equipment he has possibly some onsies or sleepers from home. Our NICU lactation would give moms a baby washcloth to tuck into her bra and get her scent on and then put it with the baby to snuggle with. If you already have some little washcloths at home then you can pack a couple into your bag for delivery and be ready with it for your little one when you get to visit. Definitely ask his bedside nurses about doing skin to skin contact, helping to change his diapers when you are there, and helping with baths. Sometimes nurses forget to ask if parent's want to do these things, so don't be afraid to speak up.

I hope this helps you. If there are any other questions you have feel free to shoot me a message, best of luck to you and your little one.

awolfff

@HayesRN13 We are definitely going with what the specialist said. It's really frustrating that the two are telling us different information and I'd love to tell you guys all the fun details, but I might quickly turn this thread into another angry pregnant ladies thread! Anyways, I'll definitely post updates as they come and once baby is here

@MurLindzz thanks so much for sharing all the feedback and for the thoughts and prayers!! I'm glad everything worked out well for you guys

awolfff

@laceymarie3 all of this is such good info. Thank you!!

Nikelizabeth

I agree with @laceymarie3! I'm not a NICU nurse, but our son was just in there for 11 days because he was 5 1/2 weeks early. The nurses can be very intimidating and protective. We spoke with the charge nurse and assigned specific nurses that we were comfortable with. It was comforting to us and it made everyone on the same page. Before we did that every nurse had their own way of doing things and it got really confusing on what was the right thing to do for our son (how long to feed him, rocking him etc) Don't be afraid to speak up if you questions or concerns! We did and I am so happy we did. Be there as much as possible and do as much as possible as far as changing diapers and feeding etc, as much as you are allowed. Also, keep a boppy there and maybe a little blanket for yourself because it's pretty cold in there. It's really tough trying to be there often but it's really nice bonding with the baby if you are discharged before him. My prayers are with you and your family. Prayers for a safe delivery and healthy baby!
Oh also, we did not allow any visitors while he was there other than our moms once or twice. He is 4 weeks now and we are just now starting to let family and friends come by. We were too worried about getting him sick, because he was a preemie. Just go with your intuition and don't be afraid to say to people that want to visit if you're not comfortable. His health is more important and they can visit later.

seesea

I had my LO in the NICU for about 3 weeks. While we didn't experience what you may go through, our NICU stay was pleasant. We had a great support system and the nurses were amazing! I agree with PP about touring the NICU, discussing their policies and talking to the Drs.. For us only 2 visitors at a time were allowed and one of them has to be a parent. Also no children under 5 and anyone under 14 has to show proof of immunization. We were able to bring our own clothes, blankets, crib mobiles, etc to make it feel more like home. The nurses even provided a digital recorder so DH and I were able to record ourselves so the baby could hear our voices. We read stories and had songs on there. Also don't be afraid to ask questions most nurses are happy to help. While we were there I stayed by my sons bedside but instead of just sitting around I did whatever I could. I changed his diaper, fed him and did skin to skin for however long I wanted. I was fortunate to have a good lactation consultant to help with breastfeeding so even though we had to bottle feed I've been able to successfully nurse him. I'm not sure about your hospital but ours had a social worker that checked in on us from time to time and had referrals for counseling if it was needed. I hope everything goes well for you and your LO. Keep us posted!

KaLikeAWind

Ftm so I have no experience here but I did want to wish you, your family, and your LO well and send my hugs. I also wanted to say a good friend of mine had her daughter born very prematurely and the girl spent a lot of time in the NICU. Pretty much everything @laceymarie3 said, she also said, but from the parents point of view. She LOVED her NICU staff and to this day (her daughter is now almost 4) is still so enamored of them.

rklinge0

Aww so sorry. It is rough having a baby in the Nicu. Our stay was very pleasant as the nurses were really nice. I had brought blankets to let her use. They had given us a snoodle to sleep with so we could get our scent on it. She slept with it. Like other pp have said find out hospital policy to see about visitors. Also see if the hospital has a boarding policy. Ours did so we stayed 2 extra nights there so we could check on her at night. If they do get people to bring you food so you don't have to worry about it. Try to be up there as much as you can to see and spend time with l/o, the little dude who was next to dd was hardly ever visited and it was really sad.
Also remember to take care of you during this time. Its a lot easier said than done but if you don't your body will feel like crap.

awolfff

Update on baby

He was born on 6/7 @ 37 weeks. Labor went super smooth and he was born a healthy baby boy! They did the echo in NICU and did not find a coarctation or anything else wrong with his heart. He was in the NICU for a day and we were both discharged today.

Thank you all for your concerns, comments prayers and thoughts!