Tips for mothers

Perhaps you have just recently received news that your unborn child will be born with a congenital heart defect. Or perhaps you have found out that your child, who you thought was perfectly healthy, is suddenly facing open heart surgery. The shock, fear, and concern for your child may seem overwhelming.

Please know that you are not alone and that others have experienced this road. Hearts of Hope wants you to know there is hope!

Here are some tips and words of encouragement shared by mothers of children with congenital heart defects. If you are a CHD mother and would like to share a thought or tip, please feel free to contact us. We’d love to hear what you have to say.

Talk to another mother who is going through a similar situation.

Go for a walk, spend time in nature.

Journal your thoughts. Focus on your child’s progress of that day. Keep track of vitals and write out a short summary of what the doctors report at rounds.

Create a carepage or blog for your child.

Make time to eat. Drink lots of water.

Get as much rest as possible.

Allow yourself moments to cry and work through your emotions. Go easy on yourself and ask for the support of a parent or trusted friend. Remember that your family members and friends will be looking for ways to help.

Heart Mom Lessons

--Shared by Stephanie Husted, Mother to Braeden (HLHS)

Heart mom lesson number ten...

 Forget who you were and who you have been

 Life is about to take a detour

 And you will be shaken to your very core.

 You've just found out something's not right

 How will you make it through this plight?

 What can you do? What should you expect?

 Of life with a child with a heart defect?

 Heart mom lesson number nine

 You'll learn to say things are just fine

 When people stop... to just say hi

 There will be days...you long to cry

 Bound by worry...fear... and stress

 At times...you'll think..."I am a mess."

 You'll smile, when you long to whine

 Then say..."thank you"...we’re doing fine.

 Heart mom lesson number eight

 You'll learn just what it means to wait.

 Patience is a virtue right?

 Who really needs to sleep at night?

 A hospital room... not a permanent state

 As each day passes... home must wait.

 Patience is knowing...things won't stay the same

 Patience is accepting...a changing time frame.

 Heart mom lesson seven here

 Our children's futures still aren't clear

 Innovations continue to thrive

 Each year more children will survive.

 These children and their familiies

 Will rise to fight these CHD's

 Research is imperative

 Our kid's deserve a chance...to live.

 Heart mom lesson number six.

 It's clear life holds no easy fix

 If life were perfect...in every way

 I guess...I'd have no need to pray

 I'd still be living...blind...and dim

 Forgetting I must lean on HIM..

 I cannot change the way things are

 But prayer makes God...seem not so far.

 Heart mom lesson number five

 Cherish this day...your child's alive

 Today we frolicked in the snow

 (Did he like it? hmmm...well...no)

 I watched him smile..as snowflakes fell

 I thought...thank God...he's doing well

 A bundled boy...warm hat...one glove

 No doubt about it...this is love.

 Heart mom lesson number four

 There is always time for more

 More messes that need cleaning up

 More cartoons on T.V.

 More yes...I'm gonna tickle you

 (The best things remain free)

 More bubbles in the bathtub

 More stories...one more song

 More this little piggie went to market.

 One more...just can't be wrong.

 Heart mom lesson number three

 Their special hearts...help us to see

 Did I always understand?

 That God holds our lives in his hand?

 Before my child...I took for granted

 The gifts in my life...that God surely planted

 Before my eyes...I missed them...how?

 My heart child came...I see them now.

 Lesson number two...take heart.

 It is okay...to fall apart... It's not easy,we don't know

 Will we watch our children grow?

 God looks to his angels...saying see why I chose her

 She is not afraid to lose her composure

 In her heart...she feels defiled

 But nothing will stop her... from loving her child.

 Heart mom lesson...number one

 It must be said...we're never done!

 That day...will never come you see

 We'll always face uncertainty

 But I will face each day unknown

 Taking heart...I'm not alone.

 These lessons... remind me to cope

 Stand strong...believe...and always hope.

Helpful Tips for Parents who have just learned their child has a CHD that requires surgical intervention

Ask questions. Educate yourself about your child’s condition.

Find a reputable surgeon and set up an initial consultation.

Contact the Social Worker at the hospital your child is having surgery at. Ask questions about the hospital, the local area, and where to lodge. Ask the Social Worker for a tour of the hospital and unit your child will be after surgery.

Network with other CHD families to establish a support system.

Set up a carepage for your child through www.carepages.com. This will allow you to post updates and photos as well as receive messages from family and friends.

Ask your employer about Family Medical (FMLA) Leave Act.

Talk to family members/siblings. Be honest and try to explain what will happen. Provide them with a brief overview of your child’s diagnosis and a summary of what will happen after birth.

Helpful tips for Parents whose child is diagnosed in utero

Ask questions. Educate yourself about your child’s condition.

Find a reputable surgeon and set up an initial consultation.

Contact the Social Worker at the hospital your child is having surgery at. Ask questions about the hospital, the local area, and where to lodge. Ask the Social Worker for a tour of the hospital and unit your child will be after surgery.

Network with other CHD families to establish a support system.

Set up a carepage for your child through www.carepages.com. This will allow you to post updates and photos as well as receive messages from family and friends.

Ask your employer about Family Medical (FMLA) Leave Act.

Talk to family members/siblings. Be honest and try to explain what will happen. Provide them with a brief overview of your child’s diagnosis and a summary of what will happen after birth.

Discuss your birth plan with the high risk obstetrician and get a feel for how they will handle the birth and exactly what the plan is for the baby after birth.

Choose a pediatrician for your child. Make sure it is someone local and one who understands your child’s diagnosis and has experience dealing with children with congenital heart defects.

As your delivery date approaches, make arrangements for someone to watch your children/pets/house.

Pay all bills and prepay if necessary so that you won’t need to worry about paying bills especially if you are unsure of the length of time you’ll spend at the hospital.

Be sure to pack bags and map out the quickest route to the hospital.

Make an extra effort to spend time with your spouse, get away for a night, or plan a special dinner together.

Birth of your child

Review your birth plan with your OB. Ask lots of questions about labor and what will happen after your baby is born. If you have certain preferences such as wanting to use a birthing ball, let the labor and delivery nurses know.

Plan in advance and think about who you may want in the delivery room. Ask the OB team what is permitted.

Ask a family member to take photos/video footage of you with your baby.

Keep in mind that things may not go according to plan. In fact, many times things don’t go as planned! The health of baby and mother is top priority. Don’t feel like a failure if things happen that are out of your control.

In most cases, your baby may need to be taken to the NICU after birth. Here you may see your child in an isolette, with IV pumps, and syringe pumps that administer meds. You child may receive oxygen or may be on a ventilator. There will be an overhead monitor that tracks your baby’s vitals. You will be overwhelmed with love and concern for your baby.

While Hospitalized

Be your child’s advocate! Don’t be shy to question why certain procedures are being done or ask about what medications are being given. Ask your nurse to explain any procedures or terms you are unfamiliar with.

Wash your hands frequently, especially when entering your child’s room. Require family members and visitors do to the same. Request that those with a cold or cough put off a visit until they have completely recovered.

Ask to speak with a social worker if you have any questions regarding lodging and insurance. If needed, ask if your child is a candidate for Children’s Special Health Care.

Ask about parking passes/meal coupons. Remember to get parking tickets stamped for a discounted rate.

Some hospitals offer free meals to nursing mothers. Be sure to ask the nurse to have a dietician bring daily menus to fill out if you are interested.

Ask to speak with a lactation consultant if necessary. 

Ask your child’s nurse if you can bring in photos to personalize your child’s crib or room.

Rest when possible. Take breaks when you need them.

Allow yourself moments to cry and break down. Go easy on yourself and don’t place unnecessary guilt on yourself if you need to take a break from your child’s bedside.

Take photos and post updates on your blog or carepage. Take the time to read messages of encouragement.

Don’t be afraid to ask for help! Your family members and friends will be looking for ways to help and would love nothing more than to run an errand, bring you food, or just sit and visit with you in the waiting room.

After Hospitalization-Transition to Home Life

Hearing that your child is going to be released from the hospital is both exhilarating and frightening. If your child is going home with medications, be sure you know what to give and how frequently. Ask the nurses to write up a med schedule for you.

Ask if the meds can be found at a typical pharmacy.  You may need to inquire about a compounding pharmacy. Ask about syringes for meds.

Inquire whether a home health nurse can visit and assess the baby at home.

Ask your child’s doctors or nurses what type of restrictions your child may have, if any.

Make arrangements to rent any equipment such as pump, or nebulizer, etc.

You may  need to limit the number of visitors when you get home.

Be sure to keep a list of important numbers or who to contact after hours.

Inquire about RSV (synagis) shots as a preventative to the respiratory syncytial virus.

Be sure to get a “going home” photo with your child! You may be nervous the first few days at home. If you have friends or family who offer to bring you a meal or run an errand, say yes! Enjoy your time at home with your child!