Hello Friends,

Today’s post will only apply to a small group of people, but if it can help and encourage just a few mamas, it will have been worth my time!

As many of you know, our son Daniel was born with a congenital heart defect called Tricuspid Atresia. As a result, he had three inpatient hospital stays and two heart surgeries last year. The first surgery was emergent when he was 6 weeks old and the second was a reparative, open heart surgery at 7 months old. These two surgeries were life changing experiences for us. They were difficult, but we have learned so much through this journey. 

We’ve gone through three different hospital stays with Daniel since his birth, and while I know many others have gone through even more, we’ve certainly learned a thing or two along the way. Today, I would like to share few practical tips for parents who are walking through a similar experience with their child.

Hospital stays are an emotionally, physically, and spiritually draining experience. Daniel’s first surgery (and our 2nd hospital stay) was the hardest experience I had ever gone through. Thankfully, by the time our 3rd hospital stay came around, we were much more prepared. 

Here are a few tips we’ve learned along the way, as well as some words of encouragement as you navigate a hospital stay with your child.

How to Navigate a Hospital Stay With Your Child

1. Acknowledge the Trial

I’m convinced that any hospital stay (no matter how short, or how well it goes) is a trial in it’s own way. As parents, I think it’s important to acknowledge the trial and the difficulties it brings. There may be inconveniences, set backs, disappointments, heartaches, or grief. This is normal. Please know that it’s okay to grieve, and it’s normal to struggle. There may be moments that you question the goodness of God and what He is doing. You may wonder why He hasn’t answering your prayers or why the answers He’s given weren’t what you expected. You may feel overwhelmed and afraid. Again, I believe these are normal experiences for any parent walking through a medical experience with their child. I think it’s important to be aware of these thoughts and feelings and know that you are not alone. Thousands of parents have walked through a similar journey. With God’s help you can walk through the trial with grace, and come out on the other side as a better and stronger person than ever before. These experiences will change you – but it will be much easier if you can acknowledge the trial and the sanctifying work of the Holy Spirit in your life!

“But he knoweth the way that I take: [when] he hath tried me, I shall come forth as gold.” Job 23:10

2. Before You Go… Get to Know Your Hospital

Hospitals are confusing places… and the bigger the hospital the more confusing it can be to navigate. When possible, arrive early for any/all appointments. When inpatient, take extra time to explore and find your way around. When necessary, ask someone to show you the way. Our third hospital stay was by far the easiest – this was partly due to the fact that we finally knew our way around the hospital. If you are going to be inpatient, here are a few things you ought to know about your hospital:

• Where do we park? Is there a specific parking garage that we’re supposed to use?
• Where is the welcome kiosk? 
• Where do we need to go FIRST?
• Where are the waiting rooms?
• Is there a family lounge where we can sit and relax?
• Where are the snack/nutrition rooms?
• Where are the lactation rooms for nursing moms? 
• Where are the bathrooms located?
• How do we get to the main floor of the hospital?
• Where is the hospital cafeteria?
• Where else can we buy food?
• What’s the best way to get to our child’s floor/room?
• How do we get to the elevators and where do they take us?
• What are the fastest ways to get from “point A” to “point B”? 

Throughout our hospital visits, my husband and I had to find the answers to the above questions… and many times, we had to figure it out on our own. Thankfully, there’s almost always someone around who can show you the way if you get lost. 

Make time to become familiar with your surroundings and learn how to navigate your hospital. It will make your hospital stay a whole lot easier!

3. Ask Lots of Questions

Before Daniel was born, a wise mama encouraged me ask lots of questions and always take someone to Daniel’s appointments with me. It’s can be difficult to hear and understand everything that’s said during a medical appointment and a second set of listening ears can help tremendously. As much as possible, my husband went to every appointment with me (with a few exceptions). As a result he understand and remembered a lot of things that I could not. He has a better understanding of Daniel’s heart condition as well as a better handle of insurance/financial issues that pop up. This freed me up to focus my attention on Daniel. Between the two of us, we asked lots of questions before, during and after doctor visits and procedures so we could be as prepared as possible. 

(If you are unable to take someone to appointments with you, ASK for special permission OR ask if a second person can participate via phone or video calls.)

4. Keep a Medical Record Book

If you don’t already have a record book of some kind – start one! You will receive an exorbitant amount of paperwork at doctors’ appointments and hospital visits. I use a three ring binder to keep track of important paperwork, contact numbers, and information that is vital to have in an emergency. Take this notebook with you to appointments. Write down questions or anything you don’t understand. Use this notebook to keep track of all the paperwork and info sheets you are given. This has been a valuable tool for me, and I would highly recommend this to any mama – especially if your child’s medical history is complex. 

5. Fall Back on Your Support Group

My main support person is my husband. He was such an encouragement to me during our hospital stays. We also knew that our parents were only a phone call away. Not to mention, we had the support and prayers of our church family behind us. 

A support group is vital. 

They can uphold you in prayer and step in to help when needed. Make a list of people that you can depend on to help in a pinch, and make a list of those who can pray for you during the difficult times. 

It’s also incredibly helpful to connect with other parents who have walked through a similar journey. Search Facebook for any groups that are specifically tailored to medical moms or families facing a unique medical diagnose. I am in a Heart Mom Facebook group that is especially insightful when I have a question that can be answered by another heart mama. Ask around and try to find a similar group that can help answer questions and offer support based on personal experience.

6. Meditate on Scripture

During our hospital stays, I did not have consistent daily devotions. I read my Bible when I was able, but it was easier to focus on one verse or passage of Scripture for the duration of our stay. During Daniel’s birth and subsequent stay in the CICU (Cardiac Intensive Care Unit), we read and meditated on Psalm 121. This Psalm was like a lifeline for me during that time and again during his surgeries.

While it would be ideal to have a regular time with God each day of a hospital stay, it’s not always realistic or feasible. Sometimes you won’t have the time and other moments you won’t have the physical or mental strength to sit down and have a proper time in the Word. I would encourage you to head into your hospital stay with at least one verse or passage of Scripture that you can cling to. 

7. Take Time to Eat

This may sound like a no-brainer, but between the the busyness of a hospital stay and the loss of appetite from the added stress, it can be difficult to get proper nourishment. Before Daniel was even born, the social worker at our children’s hospital reminded me that when Daniel was in the CICU I needed to make the time to eat. Eating a proper meal (or even a high protein snack) will help give you the energy you need to keep going. There’s enough to deal with – don’t exacerbate the stress by trying to handle it all on an empty stomach. If time is an issue, have your food delivered to your room. Keep a stash of snacks in your bag and in your luggage.

Note for mamas: if you’re nursing a child, then it’s even MORE important for you to be getting enough nourishment. Take the time to eat. 

8. Take Regular Breaks

When my husband and I were in the hospital with Daniel, we thoughtfully structured some break times into our day. In the mornings, I would take a walk down to the coffee shop in our hospital’s atrium. The walk and the hot cup of coffee were equally refreshing. Another “break” we scheduled into our day was a regular lunch break to the cafeteria. We could’ve had food delivered to Daniel’s room, but it was refreshing for us to walk down to the cafeteria and enjoy lunch together. We got some time to ourselves away from Daniel’s bedside where we could fuel up and talk about our day and Daniel’s progress (or lack thereof). 

Days in the hospital can be equally draining and dull (depending on what’s happening – or NOT happening). It’s important to schedule in some breaks for yourself.

9. Find an Outlet

It’s incredibly helpful to have an emotional outlet of some kind. A way to share what is happening and how you feel. For you, this may be talking to someone about your experiences, or writing everything down in a journal. For me, it was helpful to share updates via text and social media for those who were praying for us and wondering how we were doing. I also took lots of pictures during our stays to document the experience. While there were many pictures I didn’t share, I did share some. Now, it’s nice to be able to look back on those tidbits I saved and remember the experience. It’s also encouraging to see how far God has brought us in this journey!

Find some kind of outlet where you can share what’s happening. Make sure it’s an outlet that is life-giving and not draining. Journaling, blogging, taking photos, or even making a scrapbook of your experience are all wonderful ideas. 

10. Celebrate Progress – No Matter How Small

Every child’s medical journey will look different. Whatever road you are traveling with your child, remember to celebrate any/all progress no matter how small. There will be discouraging days when it feels as if there is no end in sight. It’s easy to get so lost in all the negative that you are unable to see any progress. You must fight that tendency in every way possible. Diligently look for the good. Look for the answered prayers, even if they don’t show up the way you expected. 

Celebrate progress, no matter how small!

11. Don’t Compare Your Journey

In the hospital you will meet many families and many children walking through a unique situation. You will see children who appear to be crushing it and you will see children (and parents) who are struggling through some un-imaginable circumstances. No matter who you meet, resist the temptation to compare your journey. Every child and each diagnosis is unique. It’s easy to become bitter or envious when someone else’s child seems to be leaps and bounds ahead of your’s and doing amazing. Choose to rejoice with them instead. Accept the unique journey that God has given your family and resist the urge to compare. 

12. Choose JOY Anyway!

During Daniel’s first heart surgery/recovery I had a conversation with a fellow heart mom who impacted me more than she will ever know. We met in the hallway and she openly shared her experiences with me. It had been a long and difficult journey for their family, but in spite of the less than desirable circumstances, she radiated JOY. I marveled at how often she smiled during our conversation. I left that conversation feeling convicted and encouraged. Her road was far more difficult than mine and yet she had such a positive and joyful outlook in spite of it all. Her example showed me that no matter how difficult the journey may be, you can still make the choice to be joyful anyway. I will forever be grateful for that chance encounter with a heart mama who taught me a valuable lesson!

A Few More Tips:

Mended Hearts and Mended Little Hearts – A website and organization for families walking through heart disease.

Girl Meets Change by Kristen Strong – This was an encouraging book that I read shortly after we received Daniel’s pre-natal diagnoses. While it’s not specifically written for medical moms, there were so many truths in this book that I could apply to our experience.

Adaptive Clothing – Kid’s with medical needs often need special clothing. Kohl’s has a line of adaptive clothing for kids which includes clothing with abdominal access (in the case of monitors, ports, tubes, etc.).

Final Thoughts

There is probably so much more that could be said and shared in this post, but I will leave it at that. I hope and pray this post is an encouragement to just a few mama’s. If this post was helpful to you, would you be so kind as to leave a comment below and tell me? If this does not apply to you in any way, please share it with a mama who may need the information I shared today! Walking through a medical journey with your child can feel like an isolating experience, the only ones who truly understand are those who have gone through similar journeys. I would love for another mama to know that she is not alone!

With Lots of Love,