For New Members

Intermountain Healing Hearts has over 500 members who, just like you, have had to sit in the "bad news" room at Primary Children's Medical Center (or other hospitals) and been told that they or their child has a very special heart. Some were diagnosed in-utero, others shortly after birth or even as an older child or adult.  We know what it's like to spend weeks or months in the hospital, and the challenge of bringing a child home on medications, feeding tubes and oxygen.

You are not alone in this Heart journey.  We "get" you and want you to know that whatever you or your child's struggles, Intermountain Healing Hearts is a safe place to talk about your fears, concerns, ask for advice, and be understood.

Members of IHH have or have children with one (and often more) of the 35 known CHDs including:  VSD, ASD, HLHS, HRHS, CoArc, Tetrollogy of Fallot, Tricuspid Atresia, Heterotaxy, Heart transplant, cardiomyopathy, DORV, TGA, etc. 

Every child has a different experience on their CHD journey.  Read the stories and experiences of some of our members by following their blogs.


Join IHH and receive a call from one of our Parent Mentors who can talk with you about their experiences at the hospital, raising a child with a CHD, and discuss some of the concerns you may have.  

Newborn Hospital Lists

Are you expecting a baby with a CHD? Are you preparing for your child's upcoming catheterization or heart surgery?  Here are some lists of things our members have found useful in preparing for their hospital stays.



BABY

  • 1-2 cute blankets for pictures... leave the rest at home and just use the ones the hospital will provide. You will probably leave the hospital with at least 5 new blankets that people bring as gifts/bingo prizes (all the babies get Bingo prizes on Wednesday!)
  • Cute socks or baby legs.... the hospital has the generic pink ones and those are fine, but if you want a touch of being able to dress your baby, this is the way to go. Baby legs are easier since he/she will have IV's in her feet some of the time and you can slide the baby legs over those. They also keep socks on her hands much of the time so they don’t yank out the breathing tube or feeding tube, so there is always a use for cute socks.
  • 1-2 outfits (preferably with snaps) ... they want them to be naked in a blanket for the most part so they can keep an eye on the chest incision.
  • You can borrow a variety of toys from the volunteers... They have lots of black and white things to look at which is really interesting for newborns, or the little teether type rings that clip together, just ask your nurse to help you find some visual stimulation things. If you have a favorite toy from home for them (maybe a gift from siblings to the baby that way they will see if next to the baby in pictures) bring it since they will let you keep whatever you want in her little isolette.
  • A nail file/emery board. The nurses are not allowed to clip babies fingernails.
  • Baby Lotion. PCMC does not have yummy smelling baby lotion…. They use some generic sterile smelling stuff. Babies should smell like sweet babies, so bring your own and you can just label it.
  • A noise machine or soothing CD's (we love Paul Cardall since he is an incredible adult CHD survivor). The hospital has lots of the sound spa things, but some of them don't work very well. You can borrow CD players and just label your cd's and put them on repeat. Soothing music was one of the few things that can sometimes bring down blood pressure and since the CICU is often a noisy place with lots of beeping machines, soft music and white noise were great.
  • Make a cute name card to put at the base of her bed. Use BIG letters so the medical team can read the name when they walk by... keep it around 4in tall x 8-10 in wide. You could also print a few family photos or make a photo collage with family pictures and your contact info, laminate it, hole punch it, and tie it to her crib so that her nurses will be able to read a little about your family and recognize you when you get there. This way, your phone number will also be attached to her bed if her nurse needs to contact you and someone else is writing in her chart.
  • Car seat and base... before your baby gets to come home, he/she will have to do a car seat test. They will buckle them into the car seat for an hour and monitor O2 sats to make sure they are breathing well. Just keep the seat in your car so it is ready when you need it.
  • Put your name on everything you bring to the hospital so it doesn't get lost - clothing, CD's, DVD's, camera....everything. You often shuffle to different rooms within the hospital so it's easy to lose things if they don't have your name on it.

FOR MOM & DAD:
Pack as if you are staying a month and then hope it is less time. I would recommend a big suitcase with long term stuff and a smaller bag that you can pack a few days worth of stuff in for when you sleep/shower at the hospital.

  • Comfy pajama pants and sweatshirts.... most CICU parents roam the halls in PJ's and it is not a big deal. For the first week after having him/her, you will probably be bleeding a ton (the stress makes it all worse!). Be sure you have clothes you can just be comfy to hang out around her bedside all day in...you can get more stylish later!
  • Transition wear.... You will probably still wear your maternity pants after the baby is born for a few weeks, but as your body recovers you will need some pants that wouldn't fall down.
  • Nursing bras/garments. They have private pump rooms on every floor, but it is definitely a faster process if your clothes are conducive to it.
  • Pads for post-pardum bleeding. You will probably be there longer than the supply from the hospital will last.
  • Layers...the hospital is ridiculous on temperature control. In the summer, sometimes it is roasting hot (which the babies love) and alternately freezing cold when the AC is on.
  • Digital camera/video camera. You will be stressed and not think about it, so make a mental note now to take pictures of her EVERY day...even the bad post surgery days so that you can look back a few days later and realize that your baby looks better and is improving. Don't forget the charging/camera cords/batteries. If you do lose one, the Parent Resource Center on the 3rd floor has all kinds of cables you can borrow, as well as a computer lab with a secure connection so you can log on to bank accounts and pay bills, etc.
  • Laptop if you have one. Sitting by the bedside all day can be really long. Books and magazines are great to read while pumping, but can be hard to focus on by the bedside. A laptop is great to watch movies, blog, look up medical terms, etc. It is nice for surgery days too to keep you distracted.
  • Pocket tissue packs- you can never find a box of kleenex in the hospital when you need a good cry. The pump rooms are usually well equipped if you run out.
  • Crystal Light water bottle packets... not necessary, but very nice. You will get water mugs from the U hospital and it is really easy to forget to drink enough under the stress to keep a good pumping milk supply. Using flavor packets is a good way to change it up from the basic water (and the hospital has the really yummy ice pellets) and it really helps to drink enough.
  • Chapstick, an extra toothbrush (one to leave in a little personal items bag at the hospital...some days we would be there all day and my teeth felt nasty!), headache medicine/pain reliever (you will have your IB Profin 800 prescription from just having a baby, but it’s not a bad idea to take a bottle with both Tylenol and Motrin in smaller doses.
  • Blank Notecards (nice for writing a quick thank you or a sympathy note to a family you may meet) and stamps... mail the thank you's right as you write them.
  • Snacks... stock up at the store before she is born. There will be plenty of days when you just don't have time to get away easily for a meal, so granola bars, crackers, fruit snacks, etc. became meals.
  • Hand sanitizer. You will use the hospital stuff all the time, but when you are out in public, you will find yourself sanitizing after touching everything just to protect you and your baby!

Hospital Tips

Here is some valuable advice from Heart Mommies that have walked the path before you. Take it all with a grain of salt, as opinions vary and different babies and situations call for different things. Hopefully this will help to make your path a little easier. Heart Hugs <3

GENERAL ADVICE
  • OTC Fenugreek - if you are going to be pumping - your milk supply will likely decrease during the stressful CICU days or weeks (Domperidone is a more powerful prescription you can also get from your doctor)
  • DON'T buy a pump. Your heart baby qualifies you for a hospital grade home health pump. Get a prescription from your doctor and save your money
  • Set up a "calling tree", email list, text group, blog, facebook etc. to let friends and family know how things are going. Cell coverage is not great in the hospital.
  • Make a list of things you need/want help with. Email it to your family, friends, church etc. Many people want to help but don't know what to do or how to help. Things like carpool for other kids, babysitting, laundry, walking the dog etc. Keep the sign up list handy and put someone else in charge (mother in law, sister etc) so you can touch base with them and not the whole neighborhood.


BRING TO THE HOSPITAL
  • For the post-surgical floor, snap-up jammies
  • Womb sounds lamb for when you are not there
  • A disposable camera for the nurses



WHILE AT THE HOSPITAL
  • Take note of nurses you like - let the Charge Nurse start a list of preferred nurses for you
  • If nursing and/or breastmilk is important to you, be sure the doctors know and become friends with the Lactation consultants - they are an amazing resource
  • Take a pic of your baby before surgery. You will cherish the pics of the perfect little chest with out stitches or the "heart scar"
  • Get out. It is hard to leave the little one but you have to maintain your sanity. Even if it is just to grab some fast food. Take care of your self.
  • There are laundry machines, internet access and other helpful things- ask a nurse or another mom for help finding them.
  • You are the hand washing boss! Make sure everyone that comes near your baby is properly sanitized, even sweet old grandma needs clean hands. 
  • Keep a journal from day one of everything, nurses you had, things you were told about your child, procedures done, milestones. You will forget things you wish you could remember.
  • If you are into Alternative Medicine, have your team refer you to Integrative Medicine. Dr. Gershan is great - she can help you with oils, acupressure and massage to help your baby!


**DISCHARGING QUICKLY**
  • The *second* they say "Home" get prescriptions filled - that takes the longest so do it right away.
  • Make sure you know the brand name AND generic name of all medications you have to give when you get home.
  • Also contact the discharge planner and make sure home health is set up and advised that you're coming home - get any formula, supplies, or oxygen right then too.
  • THEN, when the Nurse Practitioner's do their preliminary rounds in the morning which is usually 6-7, ask them to do the discharge paperwork right then.  That way when the team rounds all you need to do is have your nurse print it out and sign it and you're out the door.
  • This works best if you know the night or day before but if you find out in the morning, hit the ground running!!!!


HOME FROM THE HOSPITAL
  • If your baby/child has required a lot of suctioning in the hospital, ask for a prescription for a deep suction machine for home (a lot of us also swear by a NoseFrida for portable suction and if you don't have insurance).


TAXES $$$
  • Keep track of all your miles to and from the hospital (they can be tax deductible) Even while you are pregnant.
  • If you live a long distance from the hospital you may even be able to deduct your meals and hotel (see a CPA- even for a consult)
  • Keep track of all your out of pocket expenses- RX, Co-Pay, etc (they can also be tax deductible)


BABY SHOWER ITEMS FOR A HEART MOMMY
  • Visa gift cards to help with gas and food
  • Snap pajamas (not zip)
  • Freezer Meals