16 Things Expecting Moms of Babies With CHD Should Know

You are weeks away from the arrival of your baby. You might feel like you have waited so long for this day yet still feel so unprepared in every way possible.

I want you to know I feel for you. I feel your pain, your anxiety, your nerves, your fear and your excitement all rolled into an aching ball inside your stomach; the cause of your restless nights and distant mind.
I feel you because I’ve felt that, too. I’ve been there, right where you are standing now, and I’ve felt the depth of the waters you are about to jump into.

I want you to know I’m here if you ever want to talk or ask a question. Although, because I’ve been where you are, I know  you might not be quite sure what questions to ask. Either that, or you have so many questions you don’t know where to start.

So having known what I know now, here are 16 things I would have told myself before my baby’s birth day:

1. Take a bit of comfort wherever you go.

During labour or while staying in the hospital, take a little bit of home with you. Be it the music you love, your favorite warm blanket that smells like home on your hospital bed, your perfume or a drawing from your children to display on your mirror. Take a bit of you to make yourself comfortable. Reach each of your senses and distract your mind. Alleviate a tiny bit of stress and make the inevitable space you’re in a safe and calm place.

2. Always take your time making decisions.

Ask for some time and think about your decisions before you rush into them. It may feel like time is not in your favor and situations may often feel out of your control, but remember this is your body and your baby. Ninety percent of the time, you have some time up your sleeve so use it to feel in control again. Use it to help yourself feel comfortable with the next step. You won’t regret thinking things through, but you might regret not asking for a moment to think.

3. The NICU is overwhelming.

The NICU is bigger than you imagine it to be and it is lined with rows and rows of sick babies. Tiny plastic boxes holding the tiniest bodies you have ever seen — all hooked to machines, struggling to survive, fighting for a chance to grow and thrive, pushing against the struggles of their miniature organs. Some babies smaller than the palm of your hand. True miracles in their rawest form.

And it’s hot in NICU — it’s overwhelming, it’s emotional and the temperature is purposefully higher than normal for the newborns to be comfortable. The NICU is not somewhere to wear your slippers! Take a large bottle of water to hydrate yourself and take regular breaks so you can breathe some fresh air and revitalize your body before entering the overwhelming heat for hours again.

4. It’s hard being the only Mum on your ward without a baby.

There’s no easier way to say that. In the middle of the night, while you’ve set your alarm to express milk again for your baby, you will hear the baby next door with its tiny newborn cry and you might feel jealous. Like the sound of kittens in the night, you lie awake and wish the bassinet next to your bed was used. You might feel empty yourself, ripped off; it might feel unfair. The nappies in the corner of your room will be unused for the duration of your stay, and the after-birth pain and blood stains in your bed might seem worthless. Remember in these moments you aren’t alone. I know it might feel like it, but remember all the babies who are downstairs in the NICU, and know there are many other mothers lying awake at night, too. Make sure you take the NICU’s phone number and call them each time you wake. The nurses don’t mind, and it may give you a few more hours sleep after you’ve checked in.

5. Ask questions.

Don’t stop asking questions and no question is silly. This is your baby and you have a right to know what medications and lines are in your baby and why. The more you ask, the more you’ll learn about your baby’s condition and the more empowered and prepared you’ll be for the road ahead.

6. Distract yourself when it’s surgery time.

Easier said than done, I know, but try and plan to eat while your child is in surgery. Ordering food, eating it and talking to your family takes time, and time equals distraction. Try and get some fresh air as well. Leave your phone number with the nurses and get outside the hospital walls before they feel like they’re closing in on you.

7. Take in all the details of your baby despite the tubes.

After surgery, your baby will be covered in medical equipment on nearly every inch of their tiny body. Look around the tubes, over the wires and really see your precious baby. Notice their hair, their perfect skin, their long nails. Remind yourself of the perfect human you created and turn a blind eye to the medical equipment for a while. Talk to them, hold their hand, pat their hair. Bond with your baby and be with your baby as best you can.

 

8. Take time for yourself.

Even if that time is simply going to the toilet just outside the ICU, still take this time regularly throughout the days. Give yourself some time to breathe away from machines and away from everyone. Give yourself some moments to process what’s happening, some moments to muster up some more strength. Take a walk outside the hospital, even just to the end of the street. Breathe in some fresh air, allow your thoughts to settle and when you go back in, you might feel refreshed and ready for the next step.

9. Use those around you and accept help.

Friends and family around you want to help, they’re just on the sidelines waiting for you to say it’s OK. Don’t be too proud, let them help or tell them what you need. Ask them to take the older kids to the park for the day, accept a home-cooked meal because nothing beats that, and allow Pop to mow your lawn for a fresh look when you get home. Asking for and accepting help is not a sign of weakness, it’s the opposite. It shows courage and it allows you to focus on what’s most important: you and your baby.

10. The ICU is draining, focus on your own corner.

The ICU, much like the NICU, is very overwhelming. It’s loud, the days feel never ending and the amount of medical equipment hooked up to each child is disheartening. Time will pass by slowly but fast at the same time. Sitting by your baby’s bedside all day is draining and emotional. Sometimes, lots will happen, other times not much will happen. Sunrise will turn to sunset in a flash as you look out the window and the traffic on the road never stops. The outside world will continue on even if your baby still won’t wake up. Try and focus your attention on your own baby. It can be easy to feel sad for children in the neighboring beds and it can be hard to block them out. But you have enough going on in front of you. Lean into your baby, talk to them softly and block the rest of the unit out. Once again, don’t forget those breaks! You need them so you don’t burn out. Your baby needs you, so refill that energy cup as often as possible.

11. Take a piece of home into the ICU.

Just the same as what you did for yourself, take a bit of home into your baby’s space. Brighten their ICU bed with their very own blanket or a soft toy to watch over them. It’s amazing what a little color from home can do for the mind. Bring a bit of sunshine to a dark moment.

12. Trust the staff but be vigilant.

There is no job more specular than that of those who save children’s lives. Like a synchronized dance, the work of an ICU nurse is mesmerizing, careful and very particular. They care about their patients like their own children and put every inch of their soul into their work. However, they are also human. Trust them, but remember as much about your baby’s medications as you can. This comes back to asking questions, again. Remember there is no greater advocate for your child than you.

13. Take photos.

This might sound strange but you will be thankful you did. Whether it’s one or 100, take a photo of your baby. Look back on it at a later time to remind yourself of all you’ve been through, of how strong your baby was, but also how strong you were, and how far you have all come.

14. Celebrate small miracles for they are huge.

As small as a moment may feel in the scheme of things for any other baby, it isn’t just another moment for your baby. The first administer of breastmilk through the tube, first suck of the breast, extubation, first cuddles — these are all huge moments and are all one step in the right direction. They deserve celebration.

15. Lean on your partner if you have one.

Or your mum or your sister, whoever is doing this with you. No one understands this road you are traveling better than the person standing right beside you. Allow yourselves time to debrief often. Chat about everything: your thoughts, your emotions, your decisions. Allow yourselves time to laugh — yes laugh — often as well. Laughter really is the best medicine and it’s OK to have humor. In fact, it might help you to have some normalcy in a world that feels so foreign. Embrace those moments and kick that guilt to the ground.

16. You cannot be strong all the time.

I’ve left this until last as it’s the most important. Don’t try to be a super hero, don’t try and pretend you’re swimming beautifully when inside you’re actually drowning. Own up to your emotions — do it for you. It’s not an easy ride and it’s OK to not feel strong. Talk to someone around you or write in a journal. Let your emotions out and feel the pain inside. It hurts, it’s hard, but don’t let it defeat you. Allow yourself these moments and then pick yourself back up and carry on again.

The journey you are about to embark on might be as scary as you’re anticipating — perhaps even more so.

But what you may not be anticipating is that you will also be incredibly strong. Your own strength might surprise you and you might wonder where it came from; it might be like you were born for this role of a medical Mum.

Your baby might also be stronger than you ever imagined. You might watch them fight and defeat the odds time and time again. You might stare at them in awe of their courage and determination, not just in those moments, but for the rest of your life.

You are about to jump into some murky waters, but let me assure you, you will get through this. Sure, at times you might feel like you cannot go on. But you will. You will wake up, you will put one foot in front of the other and you will be there for your baby. I can’t promise you it won’t be difficult, but I can promise that no matter what happens, you will end up back on dry land again.

You can do this.

Know you are not alone.

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