Day 22 ~ Capture Your Grief ~ Place of Care/Birth

Day 22 of Capture Your Grief wants us to share the place that looked after you whilst you were pregnant. Share a photo of those who took care of you and your baby. This could be a midwife/doula/friend/partner.

We had 2 nurses that were there during the labor and delivery. Of course, there were more nurses involved in our care throughout our stay but these are the ones I have pictures of. My nurse Monica in the first picture was with us during the earlier part of labor and my nurse Erin in the second picture was with us during the later part of labor, delivery, and the moments after.

I’m very glad that Erin was my nurse when Carleigh was born. It felt right for her to be there and she was very attentive to our needs. The whole staff during our stay was wonderful to both to us and our family.

Was it the right choice?

Lately there have been a lot of mommas with anen babies that I know who have given birth and are getting close to giving birth and it has been making me reflect a lot on my birth experience. I really question whether I made the right decision on having a vaginal birth. I know I shouldn't question my decisions since they were very difficult ones to make, but I just can't help it. Carleigh showed lots of good signs in my tummy. She moved around a lot and got the hiccups quite often. Her stomach and bladder always had fluid in them and I never developed poly, which is a good sign that she was able to swallow. What if I would've chosen to have a C-section instead? Would Carleigh still be alive today? That's what really gets to me. Did my choice let my daughter die sooner than she should've?

A vaginal birth is definitely more traumatic on the head of anen babies than a C-section is. However, we don't know the exact time that she passed. She could've passed before I even delivered her. She passed somewhere between 2 am and her delivery at 3:49 am. But I also chose to go into labor with her and for them to break my water. Maybe it was those things that were too much for her. I could've avoided all of that with a C-section. Although I really, really don't like the idea of a having a C-section maybe I should've went that route. The bad thing is I would've had to have a C-section for all subsequent pregnancies if I would've had one because my doctor doesn't do VBACs.

I guess I'm just a little conflicted about it all. Either route could've ended the same but I will never know and that will always be in the back of my mind. Either way I would've gotten to spend time with my daughter, whether she was born alive or not, and that's really what matters.

Updated Birth Plan

I took time last night to update our birth plan. I made a few changes and added some things too. I gave updated copies to Kathy, manager of Mother Baby Care, Dr. F, and Dr. Z. I'm posting our updated version so that other families who are going through a fatal prenatal diagnosis can benefit from it. I know it helped me a lot to read the birth plans of others.

Birth Plan

03/10/2009

At 21 weeks into our pregnancy we were devastated to learn that our daughter, Carleigh McKenna, has anencephaly. We realize that Carleigh will look different physically and will have facial anomalies. We hope that everyone can see her for what she is, our beautiful little baby. We may only have seconds or minutes with her, but we may also be blessed with hours or days. As Carleigh’s parents, it is our greatest wish to be able to cherish every moment we have with our baby, in a loving and caring environment. We have compiled this list of requests and wishes regarding her birth and care in order to make this experience as easy as possible for all involved. Please do not hesitate to ask us for clarification if it is needed. Please don’t mind if we change our wishes at any time. Our wishes all revolve around our need to spend as much precious time with Carleigh as possible and to prevent her from suffering during that time. Our wishes are as follows:

1. We ask that our daughter be referred to as Carleigh.
2. We wish to have a sign placed on our door that designates what type of situation Carleigh’s birth is. We prefer not to have extraneous staff entering our room without speaking to our nurse first (i.e. housekeeping, dietary).
3. If possible, we request nurses specifically trained in bereavement.
4. We are participating in a research study conducted by Duke for neural tube defects, which includes anencephaly. For this study blood must be collected from both Anthony and Holly. Also, cord blood must be obtained after Carleigh is born. Supplies have been provided by Duke and can be obtained from Anthony or Holly. Directions for obtaining the cord blood and blood samples from Anthony and Holly will be provided along with directions for packaging and sending all samples. If any questions arise a Duke researcher can be paged at 919-970-XXXX.
5. We are planning on a vaginal delivery. We prefer not to have continuous fetal monitoring during labor and delivery unless we request it. Periodic monitoring of heart tones is preferred. In the event that Carleigh’s heart tones are undetectable or decreased we may request an emergency cesarean section. If this were to happen, we would like Anthony to stay with Holly at all times.
6. We have arranged for a photographer, Ashley XXXXX, to be present during labor and delivery so that neither we nor our family has to worry about taking pictures. Also, Lindsey XXXX will be taking video immediately after Carleigh is born. Please accommodate these ladies as much as you can. Any pictures and video they obtain will be very important to us to look back on.
7. Holly would like to freely change position during labor. Suggestions regarding positions for laboring and later for birth are welcome, in the hopes that a proper position can help to diminish pain and make contractions more effective.
8. Assuming they do not rupture on their own, please do not rupture the amniotic membranes artificially. The membranes and fluid will help protect Carleigh's head during labor and delivery. We feel this will increase Carleigh's chances of being born alive.
9. As long as it is safe for Holly, we want her to be able to hold Carleigh immediately following delivery. If Holly is unable to hold Carleigh, we would like Carleigh to be handed to Anthony. We wish to cherish all the time we have with her. Every second counts.
10. We want Carleigh’s airway to be suctioned as soon as she is born to help her breathe.
11. We would like mechanical assistance to be used only temporarily to initiate Carleigh's breathing. We do not want any extraordinary measures taken to maintain breathing or to initiate her heartbeat. We request that blow-by oxygen be available if we want to use it.
12. Since it is possible that Carleigh is going to be with us for only a short amount of time we want every second possible with her in our arms, beginning from the moment of her birth. Please delay (or even prevent if possible) any procedures that can be put off until later. If any procedures must be done we ask that they be done while Carleigh is in our arms.
13. We do not want a hat directly applied to Carleigh’s head. We want sterile dressings applied first and have information on hand to help with this.
14. We would like Carleigh to be kept warm with the use of kangaroo skin-to-skin care, warm blankets, hats, or the radiant warmer if needed.
15. We do not want to have any routine admission medications given, such as erythromycin ointment, or Vitamin K, nor do we want her blood sugar monitored unless requested.
16. We ask that you give us privacy, without abandoning us. Encourage us to do whatever feels right.
17. We do not want Carleigh to be taken from the delivery room at any time, by any person, for any reason.
18. If Carleigh lives long enough we would like to feed her. Our first preference is breast milk. If Carleigh is unable to nurse, Holly would like assistance in expressing colostrum/breast milk to give to her either by spoon, syringe, or bottle. If none of these methods work we want her to be tube fed.
19. In the event that Carleigh does not die immediately, or soon after birth, we may consider having an IV inserted for the administration of pain medication. We wish to make Carleigh’s time on earth as pain-free and comfortable as possible.
20. In the event that Carleigh is experiencing severe seizures and seems uncomfortable or in pain, we may consider the administration of anti-seizure medication.
21. We want to have Carleigh dedicated to the Lord at our request. Our pastor, Mark XXXXX, is aware of our wishes and will be present to assist us with this.
22. We want the nursing staff to weigh and measure Carleigh when we request it. Should we forget to request it, please do it prior to her leaving the hospital.
23. We would like the opportunity to give Carleigh her first bath.
24. We have brought clothing for Carleigh, which we would like to dress her in. We do not want these clothes to be removed at any point or by any other person than her parents. Carleigh is to be wearing these clothes when she leaves the hospital.
25. If Carleigh looks like she won’t survive during our time in the hospital we want her to be with her and holding her in our arms when she leaves us. When she has passed please notify staff members who will come in contact with us. Please do not take her away from us after she passes. We will let you know when we are ready. If we are blessed with the opportunity to take Carleigh home with us please give us advice on how to feed her and care for her head (with dressings etc.).
26. Please do not allow anyone in our room without talking to us first. We would like to have the option to bring our family to in the room to meet Carleigh and spend time with her. We ask your assistance in keeping them updated as we request it. We might need your help with phone calls and getting visitors in when we are ready. Carleigh has family that is very eager to meet her. If possible, we want them to be able to spend time with Carleigh while she is still alive. Time is of the essence for us and we do not want any avoidable regrets or missed opportunities.
27. Any keepsakes that we leave with Carleigh, such as blankets, loveys, hats, and jewelry, are to remain with her at all times, even when she is taken from us. These items will possibly be placed later in the casket with her or stored in our memory box.
28. We do not want Carleigh to go to the morgue at any time. We request that the hospital contact Fisher & Edgington Funeral Home directly when we are ready to say goodbye to Carleigh. We wish for her to be picked up directly from us and be taken by a staff person from the funeral home. We have made prior arrangements for this. Fisher & Edgington Funeral Home can be contacted at (937) 382-XXXX.
29. We have contacted Kim XXX, who is affiliated with Now I Lay Me Down to Sleep, a bereavement organization, and have arranged for her to come to the hospital and take professional pictures of us and our baby if she passes while in the hospital. We ask that you accommodate her in anyway that is helpful. Her number is (937) 382-XXXX.
30. If any caregiver has a suggestion or an idea that you think may be helpful, please share it with us, as there are many things we might not have thought of.
31. If any nurse, doctor, or other caregiver on our team is uncomfortable with any of this, please excuse yourself from our care if possible.
32. We would like to have as many keepsakes and mementos as possible. Please save the following items for us to take home:

• the bassinet card
• hats
• baby blanket
• any photographs taken by the hospital
• hospital ID bracelet and cord clamp
• hand and footprints (we also wish to have footprints put in books we have brought with us)
• mold of hands and feet (we have kits with us)
• lock of hair if possible
• clothing Carleigh may have worn
• heart rate/contraction strips from any monitoring
• and any other things you think we may wish to have

This is a very difficult time for all of us. We truly appreciate your help and support, and ask that you understand the varied range of emotions we may experience. We also appreciate and find comfort in your expressions of grief, so please do not hesitate to show your emotions in front of us. We have tried our best to prepare for our short time with our little Carleigh. Saying “Hello” and “Goodbye” in such a short period of time will not be easy. With your help and support we hope to make this time as meaningful as possible.

Signed,

Anthony & Holly

Considering a C-Section

Lately I have been questioning whether I really want to deliver Carleigh vaginally. I'm not sure it is really the best thing for her, so I am considering having a C-Section. I am quite encouraged that Carleigh has a chance to live a little while because of her hiccups and my lack of poly, plus whenever I see her on the US her stomach and bladder contains fluid. All these are signs that she is swallowing, which is very good! I am afraid that proceeding with a vaginal delivery would cause trauma to her head and negatively impact her and that is something I do not want. While ideally I would love a vaginal birth, I feel that I must do what is best for my daughter. I have been asking some moms in both my ABFA group and on Cafemom about C-Sections to get a little more info on what I would be in store for and that has helped. Tomorrow I have an appointment with Dr. F and I'm going to bring this up to her. This would change my birth plan completely so I would have to change many things on it and then give the updated copy to those who need it.

I must admit that the thought of a C-Section makes me nervous. This is surgery I would be having! I know lots of moms have them and they go ok, but there are risks involved-more so than with a vaginal birth. I know policies are a little stricter with C-Sections too but I'm hoping that given our situation that they would be able to "bend" some of the rules for us. Of course, I need to find out exactly what the policies are and what we could get away with so that I can adjust my birth plan accordingly. So I guess I will know for sure tomorrow exactly how Carleigh is to be born!