Undoubtedly the first several weeks at home will be filled with follow-up appointments with specialists, Early Intervention evaluations, and spending time getting used to having your baby at home. No matter how involved you were with the care of your baby in the NICU, now that you’re home it’s all up to you! How do you get through these weeks and get to that coveted “we’re finally settled” feeling?
Read on to find out what other moms and dads did to survive those first few weeks at home.
Jaime: We sent out a mass message to let everyone know that while we would love to see them to please let us know when they wanted to come so we could create a schedule. Keeping a schedule of help is so important to help space out those “extra hands”. And do not be afraid to ask if anyone has been sick or around anyone who has been sick. The last thing you want is for your baby to end up back in the hospital and your friends and your family doesn’t want that either! Be sure to mention that other children cannot have contact with your baby for a while and don’t be afraid to educate your friends and family about how easily your baby can get over stimulated. Some people are used to bouncing babies and singing jumpy songs, etc. This may be too much for your baby, let people know what your baby needs.
Melody: Enlist your husband or neighbor/ friend nearby to run errands for you! Our baby came home Jan 28th in 30 degree weather, so NO WAY I was taking him out to grocery shop or pay a bill. My husband did all the shopping/errands on his way home from work.
Angelica: “Hibernate!!! Bonding time is very important!! For us our son was in the NICU 92 days. Cuddle. Sleep. Eat. Doctors appointments. That was our life for a while. We kept friends away but close family was welcome grandma, grandpa.etc. Short visits LOTS of hand washing!! It was flu season so everyone had to get vaccinated. And if someone was sick sorry but no visit for you.”
Sarah: Always remember – this is YOUR baby. If you don’t want visitors, stick to it and don’t let anyone make you feel bad about it. This is the time you have waited so long for. People who have not been in our shoes don’t understand how vigilant we have to be to protect our babies.
Babs: “Make sure the pediatrician you find is accessible at night and on the weekends, not just a nurse call center. You also want to be sure your pediatrician has experience caring for preemies. The nurses in your NICU may have good suggestions. Make sure you interview the ped before you take your baby for the first appointment. Ask if they will consult with your neo prior to your baby’s discharge. There is a lot of information to transfer about your baby!”
Tricia: One of the best things that helped me was having totes to separate things I need to grab in a hurry, I.e. Diapers, bottles, clean pacifiers. We also had our medicines in a tote with a handle, including the nasal bulb and extra burp rag to catch the bad reflux episodes that we would carry from room to room. Also don't be afraid if your little one won't follow the NICU schedule at home the first few weeks. You will develop your own rhythm over time.
Charlotte: I was strict about visitors and only allowed people who were there to help. The neonatologist said to keep them out of the public for the first year because of having immature immune systems and I did. I would rather do that than spend time in the hospital again watching the fight to live again. I also used diapers.com (I have no affiliation with them) as they deliver diapers and all kinds of stuff right to your home (no shipping charges with $49 purchase). Also some grocery stores deliver for a nominal fee. On the flip side it is good to get out even if it is for groceries!
Amy: Keep a backpack to keep any medical supplies in, i.e. extra cords to machines, oxygen tubes, feeding pump bags, etc. Post a list of all doctors’ names, numbers, and their assistant’s numbers and names on your fridge or other central location. This will save you from searching for numbers and lost business cards.
Jennifer: “My best advice to new at home parents is to just have patience. Cash was on his own little schedule at the hospital and expected the same when he came home. So we just went with it. He's been home a month and two weeks now and has re-adjusted his schedule to flow a little easier with ours. He knows what he wants and we happily give it to him. We were blessed and didn't have to come home with any equipment or medications, so our situation is a little different than some, but it's still a big lifestyle change for Mom and Dad (especially first timers like us). We know that everything will work itself out in time and until then we just hold him and love him and enjoy every second of him finally being home and "being ours".”
Carrie: Schedule down time for yourself. Have your spouse or friend take care of everything for even just an hour. If you don't feel like going out into the public then just read a book, watch TV or surf the net or better yet sleep :)
Sarah: Enjoy him! Finally, he's home and you have him all to yourselves. Just remember not to be in rush to share him. You've waited months for this and so has he. Stay in your jammies and let someone meet the well wishers at the do. There will be countless outings, appointments and visitors for years to come.
Arlene: Stock up on extra baby clothes. With all the extra running around, I'm only able to get laundry done once a week. I also stocked up on diapers so that I wasn't constantly at the store. Having help from my mother has been a godsend. She runs all the little errands I don't have time for. Sanitizer, sanitizer, sanitizer - my new best friend! Also, disposable changing pads - they have so many uses.
Kira: 4 days after being discharged from the NICU, we ended up in the hospital several times and we have learned that its best to have a bag packed for worst case scenarios. Important things to have packed include: NICU discharge paperwork so that future docs have TONS of info in their hands. We also packed extra feeding supplies. My daughter has a g-button and the last time we were at hospital they spent several hours trying to find feeding supplies that the ER usually doesn’t have readily on hand...you never know if it will be a quick visit or one that will last a few weeks.
Susan: Since we came home with oxygen I asked grandma to help me with the first couple of trips to the doctor until I got the hang of hauling all of baby's stuff. And because of RSV season, I scheduled all of our appointments at the least busy times of the day and always ask if there's a free room we could wait in if other children are in the waiting room. Your doc's offices should be used to this.
Sari: remember that a preemie does not become an ex-preemie just because they come home. Micro-preemies are incredibly unique and just because we track their development and growth according to adjusted age, doesn’t mean that they can be treated similarly to a full term baby that same age. When we’ve asked questions about our 27 weeker’s cough or breathing difficulties, we’ve often heard “Oh, don’t worry about it much, he isn’t a preemie anymore.” Quite the contrary! He may be 10 months old, but he’s a 10 month old with weaker lungs, a compromised immune system, and a medical history longer than most adults. Remember that YOU are your baby’s best advocate!
Brenda: Make sure you take time for you and your new baby to adjust to life at home, so take your time and start a daily schedule; always makes things easier!! And make sure you know EVERYTHING about your baby’s med/treatments and have all doctors’ numbers easily accessible!!
Jodi: When going to the doctor, do not bring your preemie into the waiting room. Call from your car and ask them to let you know when the room is ready so you can bypass any contagious people. When in the room, do not take your baby out until absolutely necessary. Have nurses or doctors wear a mask if they have any slight cough or not feeling 100%. After the visit, clean your baby’s hands and feet and take any toys your baby was playing with at that time and bag them to be washed when you get home. Some people thought I was crazy, but my 25 weeker needed me to protect him!