If Your Baby Needs Open Heart Surgery

Update:  Here is a link to my full hospital packing list: https://drive.google.com/open?id=1FzROktZ9IWOKyDiKdieuBXiJrbYBzTSxvExoJf335Jw

This blog post was originally created and conceptualized over at The Blessing of Verity.  With permission from that blog owner, it is being moved here so we can keep updating and expanding the post.

We are hereby soliciting experienced advice to help other parents prepare for this situation!  We want this to be an ongoing project, so…

• If you have any ideas and/or short anecdotes to contribute, please put them in replies to this post for us to consider. We put quotation marks around all the advice that came from friends.
• If you are a relative or friend of the baby’s parents, please check out the last section of this page for ideas of how you can help lift their load.
• Thank you to everyone who is helping to contribute to this list!

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Packing Beforehand

• It’s a good idea to keep your bags packed if your baby is in an unstable condition and you live a distance from the hospital.  You may need to get there quickly, and it will save trips back and forth later.
• “Hang a picture of your baby above her bed. The nurses love to see them when they don’t look sick.  I think it helps the nurses see them as babies and not just as ‘patients.’”  [Since our baby has Down syndrome, I chose many pictures of her being enjoyed by siblings, so the medical people could readily see that she was a valued member of a loving family.  We found space to hang all of them.  ]
• I wish I had known that Verity would be allowed to have her own special blankets.  I would have packed those.
• You can take a few brightly colored favorite toys for your baby to look at while he or she is recovering.
• Don’t forget your camera and extra camera batteries.
• Take your cell phone charger along.
• Pack the music CDs that are especially soothing to your baby.  The nurses will find a player.
• “Take a great hand lotion. You will be washing your hands a LOT. Mine were cracked and sore by the end of the week and I wished I had a good lotion with me.”
• Also remember to pack your lip balm.  Hospital air really is dry.
• “Whisps (disposable toothbrush that has toothpaste in it).  You’ll likely have hungry/tired breath and it feels so good to freshen up even a little.  Disposable face cloths to clean up, too.”
• “Bring a notebook, pen, and a book.”
• “Cash card for obvious reasons.”
• “Get a cheap pillow and blanket (something you won’t mind tossing when you leave the hospital [germ city]) if you’ll be sleeping in the hospital.  They’re a hot commodity.”
• Don’t forget to pack your supplements, like pre-natal vitamins, which you should still be taking, ahem.
• Pack nightclothes in case you get to stay at the Ronald McDonald House.
• “Bring yourself a sweatshirt and long pants. It gets COLD in the hospital!”
• “Bring slip on shoes such as crocs to wear.”  ”The hospital floors are extra hard, so the crocs really help your poor sore feet.”
• Take things to do while waiting long hours with no visitors or others to talk with.
• ~Books to read
• ~Supplies for writing thank you notes
• ~Baby book
• ~Laptop
• “Pack outfits that have snaps up the front for your child to wear. They will be diapered only in the ICU, but once they are released to the step-down floor they may be allowed to wear clothing.”
• “Bring your baby button-down clothes to put on. It is a lot easier to see them when they are dressed and it hides a lot of the tubes and wires. It may be helpful to bring a size bigger so they don’t have to be stretched over IV’s.”
• “Do take comfy clothing for your child, their favorite blanket, and favorite stuffed animal for them. Depending on your ride home you’ll need it.”
• Pack a couple of empty, sturdy tote bags for all the extra stuff you’ll take home from the hospital with you.  They’re also handy for taking your day’s worth of snacks/supplies to the hospital from the RM House.
• Take along a large, re-usable water bottle.
• “We slept with a couple of her favorite burp cloths for a few nights, so when she came out of ICU, she had smells of mommy & daddy.”
• “If you have other kids, find a babysitter or someone who can come with you, because when the doctors come in, the focus goes to your little patient, and it’s hard to soak in all the information as it is.”
• “Don’t overpack! Somehow you accumulate tons of stuff during hospital stays and when you go to leave you barely have room in the car.”
• “One of my strongest memories is still standing beside my son’s bed for 22 hours while he cried.  He wouldn’t let me sit down for 5 minutes before he started crying again, so I was basically there, on my feet for a full day.  I really wanted something more comfortable to stand on.  Last week I was walking through Bed Bath and Beyond and I saw PVC gel mats for standing on, they would be perfect and easy to disinfect.

Notes for lactating mothers

• “Take lots of good snacks and try, try, try to eat well.”  [My three goals for snacks were 1. protein, 2. calories, and 3. fiber.  Calcium is good, too.  Our parents' waiting area had free milk and single-serving cereals that filled several of these requirements at once.]
• “And drink tons of water, hospitals are so dry.”  [Find out from the nurses where you can get ice and water to keep your water bottle filled.  I didn't drink enough, and between that and all the hours spent standing and sitting, my feet and ankles swelled up.]
• You may want to pack plenty of Mother’s Milk tea and/or fenugreek and blessed thistle capsules to help boost your milk supply.
• Also, anything made with oats can help with milk supply, like instant oatmeal, oatmeal cookies, oatmeal breakfast bars and granola bars.
• I recommend eating on the hobbit plan.  Six meals a day, seven if you can get them.  Breastfeeding moms may be able to get hospital trays at no cost.  Ronald McDonald House may provide free suppers or other meals.  Parent waiting areas usually offer some free food, as well as storage space for your own labeled food items.  Hospital food is weak on the fresh stuff.  We appreciated all the fresh produce several friends brought us, like grapes, cherries, blueberries, bananas, peaches and tomatoes.
• “You will have to take care of yourself to keep your milk supply up. I pumped every 3 hours, but I should have done more during the day.”
• Have a back-up plan ready for someone to come with coolers and ice and take shipments of frozen breastmilk back to your home.  The nurses started out enthusiastic about how much I was pumping, but after a few days’ worth had accumulated in their small freezer, they began to make suggestions about storing it elsewhere!  In the short-term, the Ronald McDonald House will probably have more space in their freezers than the hospital will.  A couple of hours after taking a large load of my frozen milk to the House, the hospital freezer broke down, and by the time that was discovered, every bit of frozen milk left in there had begun to thaw and was consequently thrown away.  We were SO thankful that God prompted us to move mine when we did!
• “The hospital probably has lactation rooms for NICU moms. Ask where they are and use them. Also, I found that practicing with a hospital grade pump before getting to the hospital was a big factor in success for me.”
• “For nursing moms, get in touch with the hospital lactation consultant right away.  It’s nice to have someone to help you with your nursing goals and pumping really does make you feel like you’re doing ‘something’ in a situation when everything else is out of your control.  Some hospitals have a nursing room, some make you pump in your baby’s room.  The latter can be tough to do with all of the people coming and going and visitors.”

Hospital Life

• You may want to keep a journal of each day.  It may seem unforgettable now, but the details will blur faster than you think.
• “I would very strongly urge you to keep your arms ‘safe.’ It seems more convenient and easier to adjust that tape or do a procedure with her in your arms, but don’t!  We learned this the hard way and it took quite a bit to regain trust.”
• “When my little guy was having surgery, I tried to find something like this to know what to expect.  I don’t have any advice to share, our hospital experience wasn’t the best and was just a survival experience. If I could do it over, I would do what your family did and have my husband stay with me instead of going home early to care for the other children.”
• “After they take your baby back for her surgery, ask if you can see another baby who has had the same surgery so you will not be surprised by all the tubes, wires and monitors she will be hooked up to.  It really helped us.”  [The hospital staff planned to do this for us, but there wasn't a baby like that there to show us.  We were prepared, though, because we had seen pictures on other folks' blogs.  Someone did take us into the PICU ahead of time and show us where Verity was likely to be, right in the middle area where she could be seen from any spot in the room.[VIEW POST-OP PICTURES OF VERITY HERE.]
• “Your baby will look scary right after surgery is over and they’re in the ICU.  Lots of tubes, medicines, machines.  Just prepare yourself.  Each day they disconnected at least one thing from our daughter and eventually we were able to find her under all of it!  But just remember, they are sedated and have pain killers – this is harder for you than it is them!”
• “As soon as you see your child in the ICU, ask what everything is… what numbers are measuring, what medicines are and why they are given, what will make the machines beep, etc. It helps to know when not to panic if an alarm goes off.”
• “Sleep while your child is sedated.  That first 24-48 hours is your best chance to get some sleep and you’ll need it.  Especially if your child is anything like mine was when his bowels woke back up.  We had a miserable 28 hours and I was awake for most of them.”
• “Ask when rounds are done and try to participate in them. A lot of medical jargon will be used that you might not understand, but it may also give you an opportunity to ask a question of the whole medical team at once. And as soon as rounds are over, ask the nurses for any clarification you need.”
• “A very wise doctor in the NICU told me to not forget that my baby was still ‘in there’ because I was so overwhelmed by all the wires and tubes. I know that sounds obvious but it sort of jolted me back to focusing on him instead of all the things attached to him.”
• “Try to have your baby be the first thing you look at when you come in each time.  Too often, my eyes would be glued to the monitors as I rounded the corner.  Finally, our nurse told me that even when the alarms go off, she looks at the baby first.  It helped, but it was tough.  I was a big monitor junkie.”
• If you are inexperienced with hospitals, as we were, you may have some questions about rules and protocols, like we did.  It is a huge help to have a neutral person who can answer your questions for you.  We especially didn’t know what we were allowed to ask the nurses for, or how to interpret and respond to one nurse’s unfriendliness.   The answer man for us was the pediatric social worker.  Yes, social worker.  He was a normal, nice guy named Warren, and we forgot about his title before too long.
• “Prepare yourself to possibly have a different nurse every shift every day!”
• “Do not be afraid to ask questions no matter how stupid you feel. And if you don’t understand the answer tell them, or ask someone else to translate for you, and especially to draw pictures! It is easier to understand when drawn out!”
• “I just want to second the advice that if you feel or know something is wrong, keep talking until someone listens. This is your baby, your heart and soul…don’t be embarrassed or afraid, even if you end up being  wrong.”
• “Many doctors and surgeons can be quite intimidating. Remember these people care about your baby, and are on the same side as you. I was very intimidated by my son’s surgeon at first, but after two open hearts and then a heart transplant, we’re on a first name basis, and have a  ’secret’ handshake.”  
• “Don’t judge your baby’s health by the ones around you. Every baby is different, and although my child had many more admissions, he was generally more stable than those that spent less time in hospital. He’s got a lot of angel friends.”
• “Don’t let the numbers on the monitor drive you nuts. A lot of the times they are not getting a good read, and the alarms are false.”
• “Don’t panic with the alarms. Eventually you will learn what each one means, and unless you have a whole bunch of people running to the bedside, it’s not an issue.”
• “Stay calm in emergencies.  Don’t move unless someone asks you to; you might get in the way.  Don’t ask what is going on; everyone will brief you once the child is stable.  And please don’t become a panicked mess that someone needs to take care of.  You are just distracting from the care needed for the child.”
• “Don’t listen to the nurses when they say only one person can stay at the bedside. They have to say that. If you just do it without asking there is a good chance nothing will be said. Our nurse said if we want to squeeze onto the tiny bed it was up to us.”
• “Know when you need to get away. If a situation is too much for you to handle, tell the nurse you’re stepping out and go walk the hall.”
• “Don’t be afraid to sing to your baby even if people are watching!!”  [Same thing with praying--Joe laid his hand on Verity's head and prayed for her each night before we left for the RM House.]
• Take lots of pictures.  I wish I’d taken more, especially of Verity with her visitors.  There are some things only photos can communicate properly.  For instance, it would be great to have a shot of the crazy lines on Verity’s monitor that night before her surgery.  It would make this beautifully boring reading on the day of her discharge that much more dramatic.
• 
• “The doctors told me she might sound a little raspy or harsh from the ventilator. Nothing could prepare me for her cry though; it was very weak and sad and tore my heart out when I heard it.”
• “Make sure your camera has video for the first time you get to hold your baby again.  It’s the best feeling in the world!”
• There is time and then there is hospital time.  They are two separate concepts, not to be confused with one another.  A sense of humor comes in very handy when attempting to adjust to hospital time.
• “Sleep whenever you can.”
• If at all possible, spend your overnights at a Ronald McDonald house rather than the hospital.  You are unlikely to get good sleep at the hospital.  We were so impressed with the Hershey, PA Ronald McDonald House.  It was like staying at a motel, but at no cost.
• “If you have a great nurse listen to them when it’s 1am, and you are able to go get some sleep. We had a parent hotel, and the nurse told me I was doing no good if I was tired, and that she would call me if anything happened.”
• “Be prepared if you are in a teaching hospital that the doctors do rounds very early in the morning with student doctors, and they will ignore you and talk about your child as if you are not there.”
• Keep an open mind about getting to know other waiting parents.  There is a lot of pain in a PICU waiting area, and God may use you to minister to someone else.  God put me in the right spot to lend a shoulder to a weeping Christian mother whose 11 month old daughter with an E. coli infection had been screaming in agony for two hours.  God may also send others to minister to you, like the Mennonite couple whose 17 year old daughter had been brain-injured in a serious car accident.  They telephoned another couple whose daughter had Down syndrome, and asked them to come in to the hospital to meet us.  We were so touched by this.
• You will get used to the answer, “It depends on how your baby does,” to many of your questions.  We learned to apply a sense of humor here, too.
• “Be prepared for the transition from the ICU to the floor. To go from being constantly monitored and only having to go a few feet to find your nurse, to being checked every 3-4 hours and not being able to find your nurse anywhere, can be shocking. Know that someone is always watching your child’s monitor. However, I wouldn’t recommend leaving your child alone on the floor.”
• “One thing that helped us greatly was posting updates on a Caringbridge website. It kept the number of phone calls down, but people would write notes which gave us a place to seek encouragement when we needed it. It was also a great way for us to keep track of our daughter’s day to day progress. We often looked back at the website to provide doctors and nurses with an accurate description of her progress.”
• “No matter how much you want to comfort them after surgery, if they are wrapped and ‘tied’ or ‘weighted’ down with something on their arms/legs, DO NOT unwrap or untie them. It could prove to be dangerous. No one told us not to unwrap Brooke after her surgery and she moved wrong and pulled her arterial blood pressure line out. She started bleeding everywhere and all the nurses were blaming us. Just for trying to comfort our daughter who was screaming in pain, she could have died.”
• “Don’t get excited about going home until you’re walking out the door.”

The Emotions

• “Remember that this is just one event in a lifetime of events.”
• “This one is from my husband who is a counselor: Put some thought ahead of time into what your coping technique will be and prepare. For example, his way of coping was avoidance – to stay with our 3 year old daughter and play interference with our parents, while my way of coping was to stay at the hospital from the morning after surgery until our son was discharged. And be gentle with your partner in whatever way they deal with the trauma of surgery and afterward.”
• “You may be tempted to take your stress out on your partner.  Remember to stick close together and support each other.”
• “Talk with your partner about how you handle very stressful situations and what your likes/dislikes are.  You might think you know them, but you have most likely never been in THIS stressful of a situation before.”
• “Go outside once a day and take a short brisk walk. Get away from the hospital if possible. Our children’s hospital is right by a nice park so I would walk down there and back. It reminds you, even if for a brief moment, that life goes on and that the world outside those 4 hospital walls still exists, and that you are still a part of it.”
• “Also, don’t be surprised if you don’t handle things in a way that you expected.  If you are immediately postpartum, your hormones are going crazy on top of having the stress of having a baby in the hospital.  Keep in touch with your OB on how things are going and how you are handling things.  Sometimes postpartum depression can manifest itself as anxiety.  Know that it’s okay to ask for help in dealing with that.”
• Don’t be surprised if you have one day in which all the various emotions are triggered by…anything, really…and they all come at once.  For me, it went like this:  I thought my presence would be soothing to Verity, and the first time I saw her eyes were open after surgery, I was super excited!  Almost immediately, I realized that she badly wanted me to pick her up, and she began to struggle against the arm and leg restraints and look imploringly at me.  But this made her blood pressure rise too high, which created the dangerous possibility that her delicate heart valve tissue could tear around the sutures.  It hurt terribly to know that my presence was bad for my baby and my tears flowed.  By the next morning, I was feeling very uncertain about my role, and approached her bed tentatively.  This was when her new nurse let us know that neither we nor our questions were welcome.  That was all the trigger my emotions needed.  The only place I could find to be alone was the bathroom in the waiting area shared by fifty families, so I cried it out to God rather quickly.
• “When my son was first born, I told anyone who was visiting him, that if you need to cry, please leave his bedside. He doesn’t know that what is going on with him isn’t normal. I want him to only know happiness coming from those that love him!”

Other Considerations

• “Your baby probably won’t be in any pain when you take him/her home, believe it or not.  A little tylenol maybe but that’ll be it.  They recover pretty quickly!”
• “Follow your intuition.  If you are at home and you think something is not right, get your child seen.  It’s a simple matter of timing that can save a child’s life!”
• “Be open and honest with your other children.  Get in touch with the child life specialist at the hospital and see about bringing your other kids in to have them explain the procedure and ask questions.  Have them make a book for the baby or draw pictures showing how they feel and also showing things they hope to do together when the baby is older.”
• Be prepared that your baby may be discharged with a feeding tube.  I had unrealistic expectations of Verity’s post-surgery abilities.  She does have more energy than previously, but her feeding issues may take a lot more time, hard work, and patience.
• “I was also quite upset when our baby got a feeding tube. She had not had one previously so I was hoping she would just instantly eat better. Turns out the nurses had fallen behind on pain meds. Once we got that straightened out she started eating again. Now that she is home and off pain medication she is eating like a different baby.”
• Don’t forget to take pictures of your baby in the carseat on your way home, like I did.  It is such a wonderful feeling, and can also be a bit unnerving, to drive away and realize your baby belongs to you again.
• “When neighbors and friends call and ask if they can do something, ask them to make food for you to freeze.  You’ll want quick meals when you get home – you’ll be coming down from a ton of emotions, most likely will have a baby who doesn’t sleep well and a medication schedule that might be simple or crazy.  Either way, the last thing you think of is eating or feeding your family.  It’s nice to have food handy.”

Pass it on

• Don’t forget to write little notes of appreciation to any doctors or nurses who went above and beyond the call of duty for you or your baby.
• Donate needed items to the Ronald McDonald House and/or the parents’ waiting area at the hospital.
• Come back to this site and fill in what was missing from this list.
• Now that you’ve been there and done that, you can be a great help to parents who are behind you on the path.  Many of our amazing friends and family blessed us with most of the items on this list!  Every single person who visited us was a huge blessing.  What looks like a small thing to you will not look small to the parents in the midst of this situation!

How you can help them~

Caring Calendar (http://www.carecalendar.org/) provides a great method for organizing care and assistance for families going through big changes.


Visit them in the hospital when their turn comes, and…(pick one or more)…

1. Send a note to them at the hospital.
   
   …if they have a personal blog or Caringbridge site, read their updates so you aren’t asking them to say it all over again…
   …unless they want to, then give them a listening ear…
   …call first and ask what you can stop and pick up for them…
   …or just pop in and surprise them (like a couple of friends did for me, including one from SC who was in that hospital in PA with her mom thatday!)…
   …offer to transport their other children to the hospital to see them…
   …or give respite care to the people who are caring for their other children…
   …give them a hug at least once…
   …take them a CD of soothing music for themselves and/or their baby…
   …take them a tote bag full of goodies that they may find useful, and include some special surprises…
   …take along two specialty drinks, one for them and one for you, then sit and visit in an unhurried manner…
   …offer to take pictures of them and their baby (this may remind people like me to take a picture of the baby with his/her visitor!)…
   …tell them their baby looks beautiful, even all hooked up and medicated…
   …offer to take a load of stuff back to their house (maybe breastmilk to their freezer)…
   …ask if you may pray for their baby before you leave…
   …remind them that you are praying for them…
   …and then DO pray for them!
2. Send them a gift card for a gas station, in-and-out restaurant (like Subway), specialty shop (like Starbucks), or grocery store.
3. Clean their house while they are gone, and do their laundry.
4. Put a meal in their freezer while they are gone, or after they return home.  Even better would be to organize meals for their first week home or fill their freezer with quick, easy meal components.
5. Keep checking in on them during their baby’s recovery and remind them that you are praying.  Be sensitive to the fact that they may be eager to talk about things that have nothing to do with surgery, hospitals, medications and doctor visits!
6. Offer to take their other children for a day or partial day during the time that the baby needs to stay home to avoid crowds.  A playground would be a fun destination if your house isn’t suited for children.  This would be especially helpful if the baby has a follow-up doctor’s appointment!
7. Offer to stay with their baby while they go out for a few hours during the same recovery time.
8. Anytime you go to visit the baby, wash your hands well, and be sure to tell the parents that you did, so that they are not compelled to ask you.

Here is an addendum for toddlers needing OHS: http://www.chdknowledge.com/2012/08/if-your-toddler-needs-open-heart-surgery.html