Hard Conversation

This weekend Jerry and I had a very difficult conversation with Destiny (his daughter). We have put off telling her about Hope for a while and I told him that we needed to tell her this weekend. I don't know how much she understands, but it was a conversation we really needed to have so that she can get used to knowing that Hope will be sick when she is born. We also need to have a difficult conversation with her mom to make sure that she will be able to be there when Hope is born. She will probably be back to school when Hope is born and I would really like for her to meet Hope before she either has to go to NICU for surgery or if she does not make it for surgery.

I am more worried about Destiny than I am with Jerry and Paul if anything happens to Hope. She is 11 years old and really does understand death much better than Jerry and especially more so than Paul. I worry about how she will handle seeing Hope at the hospital and I also worry about her emotionally. I guess some of it has to do with not knowing whether or not her mom will be able to deal with the emotional issues that Destiny may have if Hope does die. I just keep praying for a miracle and find that when I pray...I really feel like God is listening and hears me asking for help. He may not be able to make Hope's heart full, but I know he will give me the strength and courage to handle everything that happens.

On a lighter note, the Mandarin Duck had 10 little babies this weekend. We went out to the coop to get them today and they are super fast. I didn't think the mom would have them out of the nest already, but they were up and running. They were getting out of the coop and that amazed me. The wire we have around the coops is less than an inch wide and they were still able to get out. It was actually a funny sight watching Jerry and I running around the yard trying to gather up these tiny little ducks. I am really glad we went out and got them before some of the predators we have in the woods got to them. They are all safe and sound in a little cage in the house now.

Updates

I don't really know where to start. Life has been going pretty good and even though I think about Hope every day...it is more with happy thoughts lately. She is moving around a lot in the afternoons and evenings and I am thinking she is a 2nd shift baby. At my last ultrasound she weighed 2 pounds 11 ounces and I am excited that she has gone from the 23rd percent for her age to over 50 percent. It gives me a lot of hope that she may be able to have the surgery...as long as she is at least 5 pounds.

My grandma was here from Michigan last week. She is 94 years old and still gets around pretty good, even with a walker. She and Marilyn came and spent most of the day with us on Monday and it was great having them over. We spent the day outside with the kids (after my conference call at work). The only sad part of the day was that she didn't know I was pregnant. I figured my mom would have told her but when I asked her about it she said she didn't want to tell her that I was pregnant and there was something wrong with Hope. I know my mom was trying to spare her feelings, but Hope is her great grand daughter and she has a right to know about her and to love her like her other great grandchildren.

On Wednesday I had my doctor's appointment. Other than the weight, the appointment was uneventful (which was actually pretty nice). I don't have to see either the doctor or the cardiologist again until the 5th of August and I am really excited that I get another doctor-free month! I know a lot of pregnant women love seeing the doctor and making sure everything is progressing as it should, but I feel her moving around every day and know that she is doing fine.

I created my Birth Plan and sent it over to the maternal fetal specialist that has been working with me through this pregnancy. I guess there are a few areas that we still need to discuss in the birth plan and she is planning to set up a meeting with my OB (Dr. Silber), the fetal cardiologist (Dr. Patel), the cardiothoracic surgeon (Dr. Smith), the perinatologist, a high-risk nurse, and a few people from the palliative care team. I think it is going to be a good conversation and I will be able to let them know how I feel about everything and make sure they understand mine and Jerry's wishes.

On Saturday I met with a group of women that have children with HLHS for lunch. It was great meeting women that have children with HLHS and find out their different experiences. Two of the girls are 15 years old and doing great. It was wonderful meeting them and it gave me hope and inspiration, but it was also kind of scary hearing about all of the problems they have experienced with their children. I know I am strong enough to handle the care that is required, but I don't know if Jerry is that strong. He has basically given up hope and does not really want to discuss surgery as an option. The thought of the surgeries scare me and the thought that she might die during the surgery rather than in my arms scares me even more. I know most pregnant women can't wait until they finally get to deliver their babies...I am not one of them. Hope is perfect and doing great while she is inside of me...it is when she is born that she will be sick.

I am going to vent a little on my journal too...only because my feelings were really hurt yesterday and I don't really know what to do about it. Robin (my sister-in-law) is pregnant with a little girl and is due about 2 months after Hope. My other sister-in-law (Danielle) who is Jerry's sister bought a couple of things for Robin's baby already. I know they have a closer relationship, but it still really hurt my feelings. Everyone knows that Hope is sick, but I was hoping everyone would be able to treat my pregnancy the same. I am being over-emotional about this, but it really did hurt my feelings.

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.

Sad News - Kaia Passed Away

This morning I found out that sweet Kaia...a sweet little girl whose blog I have been following has died. She was born with HLHS and her mommy and daddy did not know about it until after she was born. I have been praying for her to be strong and recover from the surgeries and the news this morning devastated me. I think in a way that I was fast-forwarding my life to when Hope was born and I really wanted everything to turn out differently. I wanted and needed Kaia to go home and live a happy and healthy life. I can't seem to stop crying this morning and I know Jerry and Paul don't understand why I am so upset this morning.

Marilyn is coming to get Jerry and Paul this morning so I can do a presentation. My grandma is staying with mom for the week, so we are definitely taking time out of our schedule this week to see her for a while. We haven't been to see her since Christmas and I feel really bad that we haven't made the trip.

I think today is a day of reflection and my feelings have been so hard to hide lately. Hope has been moving more and more lately and I love to feel her. It shows me how strong she is and how hard I am hoping she will fight for her life. I just want to know that I am making the right decision...if she is a candidate for surgery. I don't want her to feel any pain if there is not a very good chance that the surgery will help and that she will be able to grow into a happy and healthy little girl. My biggest fears are that we will put her little body through surgery and she will pass away hooked up to machines, rather than in our arms.

I have more doctors appointments on Wednesday and thankfully Marilyn will be able to watch the boys again. I really can't imagine what I would do if Marilyn were not available to watch them. She has been such an enormous help with all of these appointments.