Funeral Home

So we have been trying to prepare for what is to come.  We have started looking into what we would want and the cost of what a funeral may cost us.  This has been so hard.  No one should have to plan their child's funeral.  It has been a very emotional week to try to discuss this and to know what we want for her.  I set up an appointment with a funeral home to look at plots and all they have to offer.  My mom was so great to call and make the final appointment time and to come with me since it was during the day and I didn't want my husband to miss work (I want to have plenty of time off for everything else we have coming up).  I was very emotional driving there thinking how I can I be going to a place to look at funeral options for my child who is still alive and kicking inside me.  It brought up a lot of emotions and thoughts driving there.  So when we arrived the funeral director started talking to us and I immediately started crying because I was already having a hard time keeping it together. They showed us the caskets they offer and it was so hard to see the tiny little caskets and to think of all those who have done this before me.  He then showed us outside to the areas available for plots.  The outside wasn't as hard to look at but it is still all so overwhelming to make these decisions.  I want my child to live so it is very conflicting to do these preparations but I want to be prepared so we get what we want and she deserves rather than be in so much grief we just make quick decisions. It is a lot to see the price of everything too, but I have to look at it as this is what I can give her and I don't get to spend any other money on her so we can just do it (thanks to my mom for talking to me a couple nights before when I was having a mini breakdown about everything).

Angel Watch

So I was told about a program called Angel Watch, it is a great program for infant loss.  So I met with one of the nurses who help run the program.  The program offers help with birth plans, funeral preparations,  grief work, and they help get you connected to Now I Lay Me Down to Sleep (photography for infant loss).  It was great to talk to her and begin creating a plan and talking about what we wanted.   They have a lot of wonderful volunteers who have experienced loss and help others who are now experiencing the loss.  I am grateful for these women who sacrifice their time to help others deal with their loss.

Telling our Children

We decided to tell our kids tonight that their baby sister Elizabeth was sick.  My husband explained that she was sick and so we wouldn't get much time with her.  We explained that we might not get to bring her home from the hospital and that she might look a little different but they didn't need to be nervous to hold her that we could still cuddle her.  My son asked some questions about why she was sick and if she was going to have a toy at least in the hospital.  My favorite thing that he said was "I am still going to love her"!  I love how sensitive he is.  My daughter doesn't understand quite what we were saying and just was asking if she was bigger than the baby.  I am so glad that we can explain that Elizabeth has work to do in Heaven while we have work to do here on Earth and that we will be together forever.  We asked that they could ask any questions they had and that we would talk with them.  It was a hard conversation but I love my kids and how well they took it and how much they already love their sister.

Disneyland

We decided after the month we had that we deserved a vacation.  We already were planning to take the kids to Disneyland before we had Elizabeth but this definitely sealed the deal that we wanted to go and get away for a week and then come back and start making some of the bigger decisions we had ahead of us.  We also discussed that this might be Elizabeth's only time to go to Disneyland and although she couldn't enjoy it she was still there with us kickin away.  It was a much needed vacation and we had lots of fun.

Inspiration

I think when we deal with trials in our life we always are looking for quotes, talks, or scripture to help lift us up and get us through.  I have been given many great talks and quotes from great friends that have really helped.  I would like to share them! Quote Unknown Author "Don't fear tomorrow for God is already there".  Great talk "Because I Live, Ye Shall Also Live" (click on title to go to talk).  One of my favorite poems is "Footptints".  With the quote "I never said it would be easy, I only said it would be worth it".  These have all stuck out to me during this time in our lives.  I am just grateful for all the love and support we have received. There is not much anyone can do at this time for us or Elizabeth including myself but just pray.  So we are grateful for those who are thinking of us and praying for Elizabeth and our family.  We feel very loved and that is what matters during these trials in that we have others in our corner cheering us on because some days we need that more than you may know.  I am grateful also to my wonderful husband who has been my rock and we have been able to hold one another up when the other falters.  I know that this will be difficult but I can't imagine doing this without him there.  He has been there to every appointment and has made Elizabeth and myself number one, even though sometimes I don't listen when he tells me to slow down and not do too much, I know he is looking out for me.

Regular Dr Viist

So today we went to our regular doctor to talk to him about all the results and specialist visit we have had. My doctor was great.  he apologized for what we have been through and stated that he has not been through anything like this personally but has seen how others have gone through it and could only speak through what he has seen.  We asked where we go from here with appointments and specialist.  We let him know that if he was comfortable we would rather just stick with him since he was the one who was going to be delivering regardless.  Our doctor stated that he would recommend just staying with him now that we know what our Elizabeth has.  He stated that there was not a lot of need for the specialist or cardiologist unless we wanted to spend the money.  He continued to let us know that he could monitor with ultrasound when needed and could perform an amnio to relieve amniotic fluid if it becomes too much and uncomfortable for me.  Finally, we felt that we were being listened to and our questions were being answered.  We discussed delivery and he stated why they don't like to do a c-section in terminal cases with babies but prefaced by saying that he would do whatever we wanted because she is our baby. (thank you someone who acknowledges that we should be part of this process and our voice is important).  I also left feeling relieved that I didn't need to go back to a doctor for 4 weeks.  I received a follow-up phone call from the genetic counselor checking in on us and she offered a program to us called "angel watch", I am not sure what this all entails but they are going to contact me, they help with planning a birth plan and more of what we want when our Elizabeth arrives.

Specialist Visit 2

We went to the specialist for a follow-up from the blood test results and the echo.  The nurse called us back and said that we were doing an ultrasound, which I didn't know we were doing just thought they wanted to talk with us.  So she starts the ultrasound. (I love seeing my daughter on the screen but I also am sick of ultrasounds and finding out one more thing so I was torn.)  She then finishes and says the doctor will be in and says it is a new Dr.  ( I was a little frustrated that they didn't tell us that it was a different doctor when we made the appointment.  I thought I would be seeing the same doctor. I wish they would tell us more I feel like I am being led blindly because I don't know the right questions to ask and they don't tell me anything either.)  So he starts doing his thing and is showing us some things.  He notices that one her toes kind of points out, which the beginning of me not liking him.  The way he said it I felt was not very tactful.  Also, I don't want to hear that my beautiful daughter might not be "normal" compared to others.  She is my daughter still and I love her, so when I feel like someone is not speaking nicely I still get protective.  After he does his part on the ultrasound he sits us down to talk and answer questions.  So we ask a few questions and he explains a few things.  The more he talks with us the less I am liking him.  I don't think I am old but after this I feel like I am old.  Every doctor ask how old I am and states that the older you get the more likely things like this happen because your eggs are old.  Lets understand 29 is not old but right now I feel ancient and that I did something wrong because it was my egg that technically had the problem when it formed with the sperm. We ask about pre-term labor and if we need to change any activity.  He says no but begins talking about c-section how they wouldn't want to do one... I am thinking ok neither do I so why are we talking about this.  He also stated that we wouldn't put me on bed rest because with Trisomy 18 there is not much quality of life so the reason for bed rest normally is to help the baby out but there is no need with Trisomy 18.  This made me upset because although I understand that her life is going to be short, she is still a person who respects some kindness.  This doctor was driving me crazy and I felt he should be more sensitive to these situations since he is a high risk specialist.  Understand I haven't gotten offended or took offense to others comment up til now but for some reason today he was off the charts of offending me.  He also was trying to push an amniocentesis that we felt was not needed at this point and just another risk. Trisomy 18 you can produce a little more fluid than normal, which led him to say that I will be abnormally large. ( yes that right he told me I would be abnormally large just what every pregnant women wants to hear.) I also just felt that they wanted me to keep coming so they could charge me an arm and a leg for the visit when really I think my regular doctor can follow me at this point.  I want to do every thing we can to get her here safely and be able to hold her but the specialist is not going to do anything different to make that happen anymore than my doctor.  In the end today was not a good day.  I had a break down as soon as we got home and felt so frustrated and upset.  I think I just need a break from the doctors appointments.  I can't wait for our vacation a week can't come soon enough.  All in all I just want to try to enjoy this pregnancy and the time I get with my angel and I don't need a doctor talking untactful to me.

Review

The last week we are just trying to process everything and try to remain positive.  We now that Elizabeth is a special person who is needed for a greater work on the other side and we may only get to have her here with us for a limited time so we are praying that we get to just hold her.  In retrospect to the first ultrasound about the cleft lip we feel silly for being so mournful over something that was so fixable but now that at the time it was difficult to digest, now we wish that is all it was.  We are just very grateful for all the support we receive and now that so many are praying for Elizabeth. One thing that has helped me also get through these few weeks has been another person's blog.  The medical websites have not been helpful in fact they are the opposite and I end up being very discouraged. The blog I have loved following is Juliet Faith.