Anticipating 6-8 week NICU stay in August with a 2 y/o at home - advice or information?

[baohomotorprovn250932]

I am 6 months pregnant with my second child and was informed a couple days ago baby has a critical congenital heart defect known as truncus arteriosus as well as a VSD. After meeting with MFM and pediatric cardiology, we were told there is no reason not to anticipate I would carry to term at this time but that baby would be immediately transferred to NICU following delivery. We were told to anticipate a 1-2 week stay in NICU followed by open heart surgery and a 4-6 stay in the pediatric cardiology ICU.

Reading through some of the other posts here, I feel lucky to have a relatively long period of time to prepare for our stay in the NICU / PCICU. We are also lucky in that the children’s hospital where we’ll have to delivery is only 30 minutes away from our home. But, does anyone have any insight on what we can do to prepare or what we should expect? Any advice for managing having older children at home (I have a 2 y/o son and 12 y/o stepson)? I also feel like I need clarification on how much time I’ll be able to spend with her while she’s in the hospital. Are we expected to leave her, are there “visiting hours” we need to adhere to, or can we stay as long as we like, including overnight?

 

[nicolelovesjesus]

@baohomotorprovn250932 Hello! My CHD baby was my first, so I cannot give you insight into managing with older kids. She was in the hospital for 5 weeks for her first surgery and 3 for her second. We lived 45 mins away. We stayed in a hotel for the first two weeks after birth, which was conveniently across the street. We stayed all day at the hospital and then went back to the hotel at night. Some days, she was paralyzed and sedated, so it was simultaneously easier and harder to be away from her; those days, I’d go home to see my dog. During her second surgery, she was 4 months old and knew me as mama, so I felt more compelled to spend every night at her bedside. Our step down recovery unit had small rooms with beds in them that you could rent, and some parents did overnights there or just naps throughout the day.

 

[baohomotorprovn250932]

@nicolelovesjesus Thank you for sharing a little bit about your experience - it helps a lot

 

[trancamhongkgv]

@baohomotorprovn250932 I can’t speak specifically for what to expect or how to manage other kids, as I only have my one, but I know that “visiting” varies by hospital, you should find out now but stay on top of any changes that may or may not happen if pandemic restrictions ease. Our hospital encouraged only one parent but didn’t ever tell us we couldn’t both be there. Some hospitals only allow one parent per 24 hours, many only allowed infrequent visits and others allowed none at one point.

I personally think it’s BS. I understand the reasoning for the restrictions, but I think it’s nonsense to consider parents of any minor in the hospital as “visitors,” we felt we should have been more “partners in his care,” which is how our hospital treated us, and ultimately when we were able to bring him home the doctor discharging him said if we hadn’t been there so much asking questions and they hadn’t gotten to know us and how capable we were, they would have kept him longer, so us being there a lot allowed us to bring him home sooner. This wouldn’t necessarily always be the case, our guy was just still vulnerable enough that he desatted very quickly when they tried him on room air, though we all knew he wouldn’t pass that test, but apparently, ridiculously, it’s required for insurance to ok home oxygen, and he didn’t just fail it, he failed it spectacularly and turned purple

 

[katrina2017]

@baohomotorprovn250932 Our hospital had a policy that you could only come and go once per day. You could stay as long as you liked, but they didn’t want people coming and going multiple times per day. As far as staying overnight, I think it depends on if the NiCU has private rooms or pods. We had my in laws come stay with us to be with our 2 year old. It was a big transition for him, but when I got admitted to antepartum I didn’t think I’d be there more than a day, so I told him I was going to an appointment but then didn’t come home until I was discharged 3 days later. The fact that you have time to prepare your 2 year old is good. It’ll help ease the transition.

 

[menorah]

@baohomotorprovn250932 I have a 3 year old with a 13 day old in NICU now. I was also admitted to antepartum for 20 days before my c-section, so altogether was in the hospital 24 days and still going back daily now to visit our 34 weeker. If you have family that can help with your toddler I would definitely take advantage of that. It’s been a god send to have grandma and cousins nearby that our daughter is excited to go spend a few hours everyday with. Now that I’ve been home from the hospital for a week my toddler does show more separation anxiety anytime we leave the house, she’s worried I’ll be gone for days/weeks which breaks my heart.

My new baby has not had surgery so it may be different yours but he has “touch times” every 3 hours and that’s when they do all his care - checking temperatures, feeding, changing diaper, etc. We make sure we’re there at least one touch time per day. At our hospital parents can come and go as much as they want but it’s encouraged to also let baby rest so they can grow and heal. For the first few days they even kept his isolette covered with a blanket to keep it dark and quiet. There’s no set visiting hours so we can come 24/7 but with a 3 year old at home we haven’t spent any overnights there with the baby. They only allow both parents to visit together every other day so some days we have to take turns, but I’m sure that’s hospital dependent.

Good luck, I hope your baby has a smooth NICU stay. It’s been so hard with a toddler but I definitely recommend leaning on friends or family as much as possible. I truly don’t know how parents do it with no outside support, but I know everyone does the best they can for their babies.

 

[sheball]

@baohomotorprovn250932 My wife and I are living your future though our daughter has Nager syndrome. We have our 3 week old daughter in the NICU who just got her trach Friday so we will be there for 4-6 more weeks. At home (100 miles away) we have a 2 YO son. We are going back and forth every few days. He misses us when we are gone but by the third day of us being home he is ready to be back with grandparents. He has been doing the best the days he goes to daycare and has a somewhat normal routine. He does act out and fights us at bedtime (we think it's because he wants to see us every waking moment).
I suggest you build your support network now! We created a group chat with the people we trust to take care of our son and have delegated to my mom to coordinate while we are gone. We just shoot a message with the weeks plan to that group and our support system takes over. It takes so much worry off of us.

Our hospital gives us as parents 24 hour access to little miss and a webcam for when we are gone. 1 sibling visit every 30 days for big brother. I suggest you ask about "primary nursing" for your daughter's stay and get set up with your favorite nurses. The night nurse that volunteered to care for little miss has been a god send when we have been home and advocates for her every step of the way. Everyday she works she automatically has our daughter so she knows every detail about her. If the hospital your going to is like ours talk to your social worker and palliative care, they are there for you as much as your child. Our social worker really takes the pressure off when we are at the facility and helps us make arrangements and loops us in on available resources. Palliative care is there to ensure our baby is getting the care she needs and is comfortable. That team has had some great discussions with us and really brings things into perspective.

Finally take care of yourselves. I'll repeat that TAKE CARE OF YOURSELVES! Leave the hospital at least once a day. We started doing a good quality supper or going to target to buy a small gift for our son/ finding a decoration for her bed spot, or just walking around a near by shopping plaza. It will eat you up sitting by the kiddos bed for 15 hours. Hell we splurged for a nice hotel room one night.
Find a way to accept the help your offered... this has been tough for us. People are offering because they care about you and want one less worry. Let someone mow the lawn, walk the dog, cook you dinner. It will let you focus on what's important! We both have had therapy appointments and I'm researching marital counseling. We aren't having any problems but want to do some preventative maintenance.

 

[ana83]

@baohomotorprovn250932 Hi There! My little one had a 70 day NICU stay. My advice would be check in with your NICU/PCICU regarding visitor restrictions. They change frequently now-a-day due to covid, etc. Remember the NICU and PCICU could have different restrictions so check with both departments. Also, my advice is don't let anyone try to guilt you into how much time you should spend there, everyone has different situations. There was 2 days during our stay where my husband and I couldn't go at all due to work/mental health conflicts. Best wishes to you and your family!