Monday, July 13, 2009

Birth Plan

Birth Plan for Hope Jane Wodzisz
Due September 27, 2009
Induction Scheduled for September 21, 2009
Written by Gerald and Paula Wodzisz

We have written this birth plan for our daughter Hope, who has been diagnosed with Hypoplastic Left Heart Syndrome. We hope this birth plan is of assistance in guiding the decisions that must be made during the course of our daughter's birth.

We are not closed to ideas outside of this birth plan, but these should serve as a guideline. We believe that the following requests will help us make the most of what might be limited time with Hope.

Prenatal Care

  1. We would like to continue prenatal care as scheduled with Dr. Silber.
  2. We are doing everything to ensure we have time with Hope while she is alive and if the only thing that will ensure her being born alive is to deliver her early, we request induction of the pregnancy.
  • Jerry did not make it in time for the birth of Paul...I was only in labor for 1/2 hour at home and had him within 20 minutes of arriving at the hospital.
  • If Hope does not come naturally prior to 39 weeks, we request an induction at 39 weeks...we fully understand the possible consequences of induction, but we prefer to have her at the hospital, rather than at home or in an ambulance.
  1. We would like to be checked for the following conditions as often as possible with Hope:
  • IUGR - our son Jerry developed IUGR at 36 weeks gestation and if this occurs with Hope, we would like to be given the option of inducing labor if there is a possibility that Hope may not survive labor.
  • Umbilical cord issues - both of our sons were born with knots in their umbilical cords and our youngest had his wrapped around his neck when he was born. We request that all measures are taken to check the umbilical cord throughout the pregnancy and if a problem is found, we would like the option of having the pregnancy induced early, rather than taking a 'wait and see' approach and the possibility of a stillbirth.
Labor and Delivery

  1. Should pain medication become necessary, we prefer to start with a sedative, rather than a narcotic. If an epidural, please use an ultra low-dose epidural so Paula can assist with pushing. Please keep in mind that our main objective is for Paula to remain as alert as possible and have Hope born alive and spend as much time with her family as possible.
  2. If induced we request that the water be broken as early as possible. We found with our last induction that if the water is not broken, labor will not start.
  3. If delivered by cesarean section (which we would like to use as a last possible option), Jerry is to remain with Paula at all times.
  4. We would like for Hope to be monitored throughout the labor and delivery and to be immediately informed if Hope is experiencing distress. If there becomes a point in time where it appears that Hope could possibly die during labor, due to her breech presentation or other complication, we want to have a c-section to get her out and prevent that from happening. We would want to take the time to properly medicate Paula so she does not have any pain through the procedure, but at the same time, we want to ensure Paula is alert throughout it and that Jerry is by her side. We want Paula to have as best a physical outcome as possible, but our primary goal is to ensure that Hope has every chance to meet us and that she is protected from unneccessary pain and suffering. We have come so far in this journey to meet her and then let her go, that we will want to do whatever we can to prevent missing out on that chance.
  5. If relatives or friends are waiting or phone in, we request that a nurse please give them updates as applicable.
  6. We request that someone (probably Nancy from Palliative Care) contact NILMDTS to keep them informed of the progress so they are available to take pictures after Hope is born.
  7. Jerry requests that he be able to cut the umbilical cord and have someone take a picture if possible.
After the Birth


  1. We request that Hope be placed on Paula as soon as possible after she is born. If she needs to be aspirated to start her breathing, that is acceptable, be we would like pictures of her on Paula as soon after the birth as possible. If Jerry is unable to take a picture, we request that a nurse or doctor take a picture, if possible.
  2. After we have spent a few minutes with Hope, we request that she be taken and cleaned and whatever else needs to be done after birth. If her health is declining, we request that she be brought to us as soon as possible.
  3. Hope is to remain with her parents at all times that it is possible.
  4. Because we don't know how long Hope will survive, we want to spend time with her immediately after delivery. Please delay and procedures that can be put off until later. With routine and necessary procedures, please perform as many as possible with Hope in her parents' arms. For the rest, please return her as soon as possible.
  5. We would like to have family and friends be allowed to visit at any time. We are not sure how long Hope will be alive and would like to make sure that all family and friends that want to meet her are able to visit.
  6. We have a few outfits for Hope and would like her to be dressed in one of the outfits we have provided after any testing is complete. We request assistance with bathing and dressing her when the time is right.
  7. Hope is not to be placed on artificial life support without our permission.
  8. We request an echocardiogram be done as soon as reasonably possible to determine whether or not she is a candidate for the first open heart surgery. We request that we be there for the echocardiogram. If Hope's health is declining, we prefer not to have an echocardiogram and spend as much time with her as possible.
  9. We request a full description of the results from the echocardiogram and if her diagnosis is no better than what we already know, we would like no lifesaving techniques implemented.
  10. If everything looks better than we are expecting and Dr. Smith feels Hope will survive the first surgery, we would like to be informed as soon as possible. Our main concern is being able to show Hope how much we love her and we don't want her to die in surgery...we would prefer not to put her through the pain of surgery if she will not survive.
  11. Hope is to receive some kind of nutrition. Paula would like to try breastfeeding, but if that is not possible we will use formula provided by the hospital.
  12. We would like assistance in taking photographs. We may have a video camera as well. Please help us with that also if we require assistance.
  13. If Hope dies during our hospital stay, please notify staff members as applicable. Please allow us space to grieve without abandoning us. We would like time alone to hold Hope after her death to say our goodbyes.
  14. We request a private room if at all possible that is relatively isolated from other mothers. We don't know whether or not Hope will survive for long and would prefer not to be reminded of all the healthy babies nearby.
  15. We request that the staff be notified that Hope may not survive and have a bereavement nurse available.
  16. We request that Jerry be able to stay in the room at all times and that visitors will not have to wait until visiting hours to meet Hope. This is especially true if the prognosis is not good. We want to make sure our sons and stepdaughter will be able to meet and hold Hope.
  17. We would like to arrange for Hope to be christianed and will provide a dress for her christianing. If the hospital has a minister to perform that service, we would like to have him/her available as soon as possible after Hope is born.
  18. We would prefer Hope not have a feeding tube. If she is not able to eat on her own, please discuss this with us before a decision is made to insert a feeding tube.
  19. We request that if Hope dies, we would like to have any organs donated. We would like to be notified if there are any organs that will be donated and whether or not they were actually donated.
  20. We request that an autopsy be performed and that the results be sent to us when the autopsy is complete.
  21. If Hope passes on, we will want to keep her with us for a period of time. We would like space to grieve, but at the same time, may need your help with notifying relatives and the funeral home, and in making decisions about next steps.
Keepsakes Requested

  • Bassinet Card
  • Hats
  • Baby Blankets
  • Any Photographs taken at the hospital
  • Hospital ID Bracelet
  • Hand and Footprints
  • Holds of Both Hands and Both Feet
  • Lock of Hair
  • We are open to other suggestions as well
This is a very difficult time for all of us, including you, as you work to support us and care for us throughout this part of our journey. We truly appreciate your help and support, and ask that you understand if we seem indecisive or even angry at times. We also appreciate and find great comfort in your expressions of grief, be it through tears or even through humor, so please do not hesitate to cry or be sad in front of us, if that is how you feel.

We have tried our best to prepare for this short time with our beloved Hope, and we want to be able to spend as much time with her as possible. Thank you so much for helping us and supporting us through this celebration of our daughter's short but precious and meaningful life.

4 comments:

  1. I know that was so hard to do and I am sorry you have to do that. You should contact the people from the Now I lay me down to sleep organization. You can find a link to them on my blog. They will be able to help you with photos and video. I am going to meet with a lady from that organization later this week to go over stuff. They are pretty much in every state. Give them a call, they are really nice and it's free for you. That way you can have very pretty pictures without having to worry who is going to take them for you.

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  2. I only just found you tonight. I am so sorry for you even having to make a plan like this. My heart just breaks for you.
    Please know you are in my prayers.
    xoxo,
    Marian

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  3. I am so sorry that you are going through this. I hope that after Hope is born, that her prognosis gets better and she will be able to have the surgery and survive it. Goodluck. I will keep you and your family in my prayers!

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  4. I know how hard this is for you and wanted to let you know that my thoughts are with you and your sweet baby girl. I lost my beautiful baby girl on June 19, 2009 due to multiple birth defects with her kidneys and bladder, she lived for 2 days and I cherished every moment that I had with her. It was a very difficult pregnancy with doctor's visits always riddled with the worst case scenarios and doom and gloom - it was a very sad and depressing time to say the least.
    I was reading your birth plan and saw all of the items that you want to keep should Hope pass away. I kept several locks of my baby girl's hair and put a lock of her hair (tied with a small pink ribbon) in a beautiful James Avery locket - heres the website to the locket

    http://search.jamesavery.com/?q=lockets&search_originated=1

    I had her initials inscribed in a beautiful scrolled text on the front and 'Forever in my Heart' and her birthdate on the back. I wear the locket on a longer chain so that it lays over my heart - I wear it everyday and it brings me a sense of peace to have apart of my daughter close to me.

    I would also suggest getting in touch with now I lay me down to sleep - it is an organization that takes professional pictures of your baby, free of charge. The hospital should have information on them. The hospital offered to call them for us, but we didn't due to how distressed and sad I was, the last thing I wanted to do was pose for a camera (other than our own personal camera) - I now wish that I had them to take pictures of our angel - when all is said and done all that is left are the memories and pictures.

    I wish there was something that I could say that would help take the pain away - It has been two months since losing my baby girl and I think about her daily, I miss her daily, but each day gets a little bit easier to get through. I truly hope your little angel continues to fight and proves all of those doctors wrong - Please feel free to get in touch with me anytime. My name is Melissa and my email address is: melissa3075@verizon.net

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