Thursday, May 31, 2012
Sometimes I wonder if I really understand what is happening. There are days where life just seems to go on like normal. Joy always pops up into our conversations somehow, but the day seems to be rather normal. For instance today the two younger boys and I were eating cheese and Jace broke off a little piece and said "This one is for Joy, I think that she is hungry." Then he put it in my mouth. I think these days are a blessing. I know that there will be unbearable heartache and pain that will come after she passes but we will overcome that when the time comes. It does not help me to dwell on the earthly things that I will miss with my sweet daughter, even though while I am writing this I cannot stop the tears. She is ours forever and I WILL get those sweet blessings with my baby, I just have to be patient. It is amazing how much love we have felt already. Every day I am so grateful for the kindness we are surrounded with and for the help I know we are receiving by the comfort of the spirit. I know our Father in Heaven has not asked us to do this on our own and there have been so many tender mercies given to us. One day I will never have to let her go again.
Monday, May 28, 2012
I went in for our 16 week checkup with our fifth child. I had been so sick with this pregnancy and had finally felt better five days (friday) before my appointment. Sunday I received a call to be in the Primary presidency. I was completely shocked because I had just been called three weeks prior to cub scouts and had been so excited to have the chance to have Jaxon in our den later this year and I loved my calling in nursery. They explained that they had not found a replacement for either calling so they asked if I would be ok fulfilling all of them possibly throughout the summer but no longer. I felt completely fine since they would not really interfere with each other and when I had sharing time I could find a sub for nursery if I was supposed to be in that week. I remember being so grateful that I was able to fulfill my callings and not have sickness invade my ability to serve. I felt like it was truly a blessing from the Lord, I just didn't quite know the depth of that blessing.
Our doctor wanted to do another ultrasound because she had a hard time getting an accurate measurement at our 12 week. About 30 seconds into the ultrasound she stopped and said "I was afraid of this." She then proceeded to tell us that our baby had a condition called Anencephaly meaning that her head had not fully formed at the top and neither had her brain. Justin asked what would happen at this point and she said that the condition was not compatible with life. Our hearts immediately dropped and I fought hard to hold back the tears and really understand what was going on. At that point Justin took over any talking because I was completely out of it and don't remember much of the rest of the visit. He had learned about anencephaly in school and had questions that I wouldn't have even thought of. We had another doctor come in that Justin knew and confirm our diagnosis and we were to see a specialist that happened to be up from McKay Dee the next day (tender mercy) As we left my sweet doctor gave me a hug and I remember walking out thinking "just make it to the car" Justin and I didn't say much and when we finally made it to the car we crashed. I don't remember the last time that I physically cried that hard. We had so many questions and felt so lost. I don't think we could even say anything. Justin works right next to my doctors office and had just gone on break for my visit so he needed to go in and make sure his patients were covered for the rest of the day. While he was gone I called my mom telling her in as few words possible what was going on, asked her if she could take Jaden to scouts and got off the phone. It seemed like forever before Justin got back but it was only a few minutes. Justin took me home and then he went and got our kids (jaden was still at scouts) Sweet Justin got them food then took them to a park so I could have time by myself. I spent the time on my bed just trying to wrap my mind around what was going on. Jadens scout leader who is my visiting teacher brought Jaden home and gave me a quick phone call to see if anyone was home. I told her I was there and she said I sounded tired and asked if everything was ok. I told her I had a rough day and would call her tomorrow to talk about it. Our parents came over and gave each of us blessings. In our blessings we were both comforted knowing that whatever decision we made that we would know that it was the right one for our family and situation at this time. It is amazing how blessed we are to have the priesthood in our families. I was blessed to receive a blessing not only from my father but from Justin as well and that was a very special experience and truly increased my faith. The rest of the evening went as normal as it possibly could and we tried to get some sleep but I don't think either one of us succeeded. The next day we got up, got the kids off to school and spent a special time together on our knees asking our Father in Heaven to bless us with kind and understanding nurses and doctors that we felt comfortable with and could explain everything well but delicately. There are so many tender mercies that Heavenly Father has blessed us with and the time during this visit is a very special one.
This ultrasound was a lot easier mentally because we had time to settle with the news but the emotions seemed to flow more freely. We were so grateful for our sweet tech who focused on all of our sweet baby's perfect little parts and didn't mention once her abnormality. She recorded the ultrasound on DVD for us which we are so grateful to have. Our baby was growing right on track and measured only a few days shy of out expected due date. The tech kept trying to get different views of our baby to see if she could tell the gender. Every once in a while she would say "now this is something that is usually only shown in girls at this age but I am not certain" She would keep finding different things that said girl but was not certain enough to give us a 100%. Of course I was quite emotional when we found out it was a girl but it was a happy emotional.
After the tech was done with our ultrasound she went out to find the doctor. He is actually the same doctor that I have seen with my ultrasounds since Jaxon. He came into the room, sat down, explained that she did have anencephaly and asked what we wanted to know. Justin said that since we had never been through something like this before we didn't really know what questions we should be asking and therefore asked what we should be asking at this point. I don't remember everything he said but he talked about anencephaly and the different types and that basically it was the most severe case of spinal bifida. Sometimes the babies have both but ours was just anencephalic. He said that she would most likely be born still but some that go to term are able to take a breath before they pass away. He said that it happens one in every thousand pregnancies and we have found that most are girls. It could either be genetic or chromosomal but we would not be able to tell unless they took some of her tissue and biopsied it. Our chance of having this reoccur is 3-5% if it is genetic. (the same percentage that we have with having another baby with a heart defect if that was also genetic) He said that there was nothing I could have done to prevent this from happening and it didn't happen because of a hot bath or a hard fall. He explained that most of us get enough folate in our diet and that the prenatal gave way more (which I took) He did tell me that the highest offered in a prenatal was 1 mg but that if we were going to have future children I would need to up it to 4 mg a day since they had seen less occurrences of defects on future babies with higher levels of folate (folic acid). He said that there may be a possibility that my body has a harder time absorbing the vitamin which was another reason he upped my dose. Then he started talking about our options at this point. He stressed the risk of future children if we decided to take this baby to term especially with my previous c-sections. If I went into labor between 22 and 30 weeks that my uterus would be basically cut in half or given a T and would severely limit or eliminate the chance for having more children. If I decided to try to deliver vaginally during that time period and my uterus ruptured that would result In a hysterectomy. At the time our safest option seemed to be inducing labor between now and 22 weeks. Neither of our options were pleasant because they all resulted in the loss of our baby. We talked about organ donation if the baby went to term and he felt like the organs would not be able to be used because the baby has a birth defect. We also talked about papers to sign if we decided to induce labor (abortion papers) then we started talking about people who were out there to comfort us. Different groups that are there to help couples in our situation. It is so hard to remember everything, the doctor was with us for over an hour. In the end he gave us his card with his cell phone on it and said we could call and ask questions at anytime. We joked about calling him during his sons baseball game since we had learned he was really into baseball and loved watching his son play and he said he would answer. His card also had a few other numbers of people written on it. From here we would need to have a follow up visit with my OB and go from there. We felt like we were finally starting to somewhat get a handle on things and I think at the time we were both leaning towards inducing labor although neither one of us felt like we could decide for sure. It seemed like one way seemed perfect then minutes later we would flip and the other felt right. I really didn't think that I would be able to emotionally take the baby to term. I hadn't started wearing any maternity clothes yet and didn't really touch them before 22 weeks in previous pregnancies. I felt that if I never got them out that it would help with the pain.
We went to lunch and on our way Justin tried to set up a appointment with our Bishop. He left a message and could not talk normally. He kept saying random things, you could tell that his brain was scrambled. He ended the message with a love ya and we both busted out laughing. It felt so good to laugh and just reminded me of how grateful I am to be sealed to Justin. He is truly my best friend.
We returned home and searched for comfort in conference talks and also tried to find answers to our questions in the church handbook. We met with our Bishop and talked about both options and the pros and cons with each one. He echoed our parents and doctors saying that whatever decision we made that he would support us. He did talk about how if she were to breathe that she would be sealed to our family and asked if her taking a breath was important to us. That was a different and difficult question to answer. We both felt like the Lord had a way for these sweet babies to have their families and didn't feel like our decision needed to be based on whether or not she was able to breathe. At the time I could not wrap my head around the fact that she could live for a few minutes. It was much easier just planning on her being born still and not getting myself excited to see her alive and then being immensely sad if she was not able to breathe. Too much for me to handle. Our Bishop asked if he could share our story with the stake President and of course we were grateful for the thought. We left the church and quickly found a babysitter and ran to catch the last session at the temple. We felt like we had taken all the steps and really hoped that we could be comforted and be able to make a decision. As I look back now we were complete vegetables in the temple. There were so many tender mercies but I do think we were so exhausted that we were not able to see them all and by the end we were just sitting there trying to soak any inspiration in but unable to. By the time we got home we crashed and were finally able to sleep some but we were sad that we had not been able to feel which decision was right for us. I had told Justin that maybe we should let our baby go and focus on bringing more children to the earth. She already had her body and we were just holding her here with us. I thought that by maybe holding another one of our babies in my arms that it would help with the heartache of not being able to rock and hold this sweet baby. Justin went to work the next morning and was able to get us into an appointment with my doctor that day. We found out a couple things that day. One that we aren't super human and even though we may think that we can handle everything our bodies cannot and may react to things differently than we want to. Two, it is ok not to be super human. Justin came home from work and we tried again to ground ourselves and just spend time with each other and the Lord. It is funny to look back and see how differently our bodies were reacting but we seemed to be quite in sync with one another.
We tried to write questions that we would ask my Doctor. Here is a copy of the questions I had typed in my phone.
What are the pros and cons of carrying her until 20 weeks then delivering her?
What are the risks and pros to carry her full term?
If I did want to have other children after when could we?
It was amazing how differently our doctor looked at things than our specialist. They were on different sides of specialties. The specialist was way more conservative which is totally understandable. He deals with different defects and that is all. Our doctor was fairly confident after she looked at her notes after my last c section, that we would be fine to try to carry her to term. Even if we had to T my uterus she felt like I would be able to carry a baby again. She really didn't have pros or cons with either. She really left it in our ballpark, which we are so grateful for. She also had a colleague who had delivered a anencephalic baby and was able to donate some of the organs. She said she would try to find statistics on the risk of stillborning before term after 16 weeks. She felt like 60% was from week 1 and felt like our odds were better. She would also look more into organ donation and anything else she could think of that would help. We talked about the religious side of things, since she is LDS it makes it really easy to know we are on the same page that way. We left feeling so grateful for her and her expertise. Our gratitude was just overflowing to our Father in Heaven for allowing such wonderful people to help us.
It is amazing everything that can happen in three days an even though you feel like you cannot breathe and think, the Lord truly puts people in your path that are prompted and listen. When we were leaving to go to our appointment with our specialist, my visiting teacher showed up with a loaf of bread and a hug. She had no idea but listened to the spirit. It was so good for me to let her know what was going on an cry with her. She is a very dear friend of mine. The other just came up and tidied up toys in our yard. They brought me dinner that night. I also had our first presidency meeting that night and called the president and told her what was happening and that I would not be able to make it to the meeting and tried to tell her I would do my best at my calling but I felt like the Lord knew I needed to stay busy through all of this. She was so wonderful and understanding and affirmed to me that there was no question I was where I needed to be in my calling. Even with her full plate just being called as the president she brought me dinner on Thursday. My Relief Society President brought me some flowers and just sat and cried with me. I was supposed to be helping in both of the boys classes those days and when I told the teachers I was not able to come they were nothing but sweet. They didn't know what was going on and could have easily been frustrated with me leaving them high and dry but they were so kind. I also had a friend take the joy school class that I was supposed to teach Thursday, I didn't show up to scouts Thursday night and the primary president went in my place. My partner in scouts took over the activity even though I was supposed to be in charge that week and also brought us dinner. I talked to a dear friend. Of course I could never say everything our parents did. They took our kids, took my laundry... There are so many things they did that I could never recount. By the end of the week I was not only shedding tears to mourn but of an overwhelming love for the people that surround us and have shown so much support and love. It is so true that the Lord will never leave us comfortless, whether it is by the spirit or by people who truly know how to serve.
I know this is a forever long post and I am sorry. I have little time so this is acting as my journal too until I have time to sit down and write. It is so much faster to type. I have so much more to post about but will give you a break and post it soon.