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Mended Little HeartGuide

Diagnosis 3 In The Feeding My Baby Please review this form with the hospital nurse or your child’s pediatrician. Breastfeeding Your Baby I need to feed my baby every ____________ hours. My baby nurses for ____________________________ (time) on each breast. Lactation consultant (if any): _______________________________________________________________________ Phone Number: ___________________________ Email: ________________________________ _____________ Breast pump rented from (if applicable): _____________________________________________________________ Phone Number: ___________________________ Email: ______________________________________________ The CDC has information about storing breast milk. Date Feeding Time AM or PM? Comments 1 Development and Education Many children with complex congenital heart defects (typically those that require surgery and regular follow-up care) have neurodevelopmental issues. (See the Neurodevelopmental Issues section of the Mended Little HeartGuide). This means they may not develop at the same pace or perform academically on the same level as their peers without CHD. Here is a form to help you keep track of screenings and any resources you may need. Please review this form with your child’s cardiologist and primary care physician. Professionals who can perform neurodevelopmental screening (record any information that applies): Primary Care Physician: _________________________________________________________________________ Phone: _______________________ Email: __________________________________________________________ Neurodevelopmental Physician (if available): ______________________________________________________ Phone: _______________________ Email: __________________________________________________________ Educational Consultant: _________________________________________________________________________ Phone: ________________________ Email: __________________________________________________________ Early Intervention Specialist: _____________________________________________________________________ Phone: ________________________ Email: __________________________________________________________ State Department of Education Website: __________________________________________________________ My child has been screened for neurodevelopmental issues at: _______ 12 to 24 months Date: _______________________________ Results: ________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Questions I have: ________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ 1 Emergency Plan In the event of a serious emergency, please call 911. For a non-life-threatening situation that requires action, please follow these instructions: _______________________________________________________________________________________________ Here is the information you may need to care for my child: Child’s Name: _____________________________________________ Date of Birth: ________________________ Child’s Heart Condition: ___________________________________________________________________________ Surgeries or Procedures: __________________________________________________________________________ Child’s Normal Oxygen Saturations (Blood Oxygen Level): _______________________________________________ Parent/Caregiver’s Name: _______________________________________________________________________ Address: _______________________________________________________________________________________ Home Phone: ___________________Work Phone: ________________ Cell Phone: _______________________ (Circle the number to call first.) Parent/Caregiver’s Name: _______________________________________________________________________ Address: _______________________________________________________________________________________ Home Phone: ___________________Work Phone: ________________ Cell Phone: _______________________ Primary Care Doctor: ___________________________________________ Phone: ________________________ Cardiologist: ___________________________________________________ Phone: _________________________ Other Specialist: _______________________________________________ Phone: _________________________ If you can’t reach a parent or caregiver, call: ________________________________________________________ Relationship: ___________________________________________________ Phone: _________________________ Insurance Company and Policy Number: ___________________________________________________________ Things to look for in my child that indicate a problem requiring medical attention: ____________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Questions for Doctors Print or save copies of this page to make sure all of your questions are answered. Date: ____________________ Question for: ___________________________________________________________________________________ (Doctor’s Name) Question: ______________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Answer: ________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Do you understand the answer? Yes _______ No _______ Additional questions or thoughts: __________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Date: ____________________ Question for: ___________________________________________________________________________________ (Doctor’s Name) Question: ______________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Answer: ________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Do you understand the answer? Yes _______ No _______ Additional questions or thoughts: __________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Tests and Procedures Date Test or Procedure Reason Performed Results and Next Steps Transitioning to Adult CHD Care (For Your Child) When your son or daughter becomes a teenager, fill out this form with him or her. Please review it with your child’s cardiologist. Name (teen’s name): _____________________________________________________________________________ My heart defect(s) or disease is called: _______________________________________________________________ In my own words, this means: ______________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ I have had these surgeries or heart procedures: ________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ My normal blood oxygen saturation (SATS) range is: ____________________________________________________ Medications I currently take are: ____________________________________________________________________ _______________________________________________________________________________________________ I am taking these medications for (reason): ___________________________________________________________ _______________________________________________________________________________________________ I have a pacemaker: Yes _____ No _____ ICD: Yes _____ No _____ I have had a valve replacement: Yes _____ No _____ Date: ____________________ Valve replaced: ______________________Replaced with (type of valve). _________________________________ My pediatric cardiologist is: ________________________________________________________________________ Phone: _______________________ Email: __________________________________________________________ My adult CHD cardiologist will be: ___________________________________________________________________ Phone: _______________________ Email: __________________________________________________________ (Be sure to find an adult cardiologist who specializes in congenital heart disease.) I have made an appointment with the adult CHD cardiologist: Yes _____ No _____ 1 Letter to Family and Friends Dear Friends and Family, I need to let you know that my child has been diagnosed with a congenital heart defect (CHD). Finding out was very scary and difficult. Right now, I could use your help and support. There is no known cause of CHDs at this point, so there is nothing anyone did or did not do to cause my child’s heart defect. Parents can do everything right prenatally and still have a child with a CHD. CHDs affect people of every race, cultural background and socio-economic status — they do not discriminate. I know you want to be helpful to me, so here is what you can do: Please don’t tell me that things could be worse or that I should be grateful for all we do have. Please don’t compare my situation to anyone else’s or give me advice. Please do listen when I need to talk to someone, help me even when I don’t ask for it and send me emails, texts, letters and cards to let me know you are thinking of me. Please be here for me and let me grieve if I need to — even if it takes a long time. CHDs are the most common birth defect in the United States, affecting about 1 in 110 babies (40,000) each year. Around 25 percent of children born with CHD will need surgery or other interventions to survive. There are about 35 different types of CHD, and some children have a combination of two or more. For some types, there were no surgeries or procedures to help them survive until fairly recently. Luckily, many children born with CHD are now living well into adulthood. If you want to learn more about my child’s condition, please ask me the name of it and visit MendedLittleHearts.org to learn more. Don’t feel afraid to be around me or my child, but if you are sick or even think you may be sick, please don’t visit or let anyone else visit us who may be sick. Don’t be nervous about holding or taking care of my child; I will tell you everything you need to know. Please treat my son or daughter like a normal baby and not like a sick or fragile child. My child is strong and brave. If I become less social than I was, understand that it is not about you. I am trying to cope with changes in my life and my family’s life. Know that sometimes I feel like I don’t fit in with “normal” parents anymore, and I may be a little quieter for a while. I feel like it’s not fair that my child was born with a CHD, but I am trying to accept it. I hope you will too. Sometimes, I need to talk to other parents of children with CHD because they have walked this path and truly understand it, but that doesn’t mean I don’t value your wisdom. Know that CHD changes people, but in many good ways too. Thank you for being there for me during this time. Notes Save or print as many pages as you need for notes, questions or journal entries. _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ Feeding My Baby Emergency Plan Tests and Procedures Letter to Family and Friends Development and Education Questions for Doctors Transitioning to Adult CHD Care (For Your Child) Notes 1 General Information 2 Prenatal Hospital 4 Living With CHD 5 Forms 87


Mended Little HeartGuide
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