Friday, May 29, 2009
First of all I want to apologize to those of you that will have to hear this news here. I just don't have the strength to make calls or talk to anyone. Our test results came back and our baby has a lethal skeletal dysplasia. Campomelic Dysplasia, One of the ones I dreaded and feared but was sure that God wouldn't allow. We are told we will have minutes and possibly days at best with him after birth. My heart is so broken as is Nicks and the childrens. I still have 3 months of pregnancy and fear others comments like when are you due? What are you having? I dread my doctors appointments where I used to walk in with such joy, where I would sit and look at pregnancy magazines and make plans and dream about my child's life. I am afraid to go to my ultrasound and fall in love with him even more as he looks so perfect swimming in my womb, I fear most of all giving birth to my baby and having to say goodbye to him. I fear never being the same again. Please forgive me/us if we hibernate for awhile.
Wednesday, May 13, 2009
I am so frustrated today. I just called Johns Hopkins to check on the tests they are performing on our lil guy. I almost fell off my chair when she said " the tests can't be started until we get the ok from your insurance." You see, that's why I hate making any calls. They never bring good news anymore. Nick was sensible about it when I told him and reminded me that the test outcome isn't that important. We are going to carry the baby to term and trust that God's will be done. I just long for hope. Some days I have so little to begin with and then things like this feel like a major setback. Even if the tests are negative for the lethal forms of skeletal dysplasia they are testing for, there are many other lethal and non lethal forms that they aren't testing for. I feel like driving to Johns Hopkins and slapping cash down and saying "now please start the testing!" Howwever, my car isn't in great shape, I have no idea where John Hopkins is, and I don't have the money.. LOL How's that for being helpless. I think there must be some grateness in being totally helpless. I know there is, I just can't feel it right now ;-) thanks for reading and I feel a little better after venting!
Monday, May 11, 2009
Yesterday was Mothers Day. Mothering runs deep in my veins as I am sure it does for many women. When my children were small I felt like such a good parent. I received many compliments on how my children were so well behaved, and I got really comfortable with my status as a good mom. As my kids get older I realize I am not the perfect parent, and there is nothing that can prepare you for when your sweet and loving babies turn into cell phone junkies declaring their right to privacy. Upon waking yesterday I heard rustling in the kitchen. Being the good mother that I am and not wanting to ruin any suprise of a pancake breakfast in bed, I stayed in bed and waited. Laying in bed waiting for the smell of pancakes to start swirling in from down the hall I started thinking about our unborn baby boy, mainly if this would be the only mothers day he would spend with us. I really hate it when I think like that but I haven't totally figured out how not to. Tears were soaking my pillow and my thoughts turned to my older children, we have been dealing with a lot of disrespect issues and other behavior issues. Mother's day... the words kept running through my mind. It used to be a day that felt well deserved. Now it feels more like a day of mourning, failures, and fears. In no way do I mean my children are failures, it's me I wonder about. It's hard when you are involved in a massive pity party to look outside of yourself, but I also thought about all of the women who are unable to have children, or have children that have passed away, or that are grown and long gone. I soaked my pillow a little more for them. By this point I was wondering why the pancakes weren't saturating my bedroom with their sweetness. I wondered if they had switched to eggs, they know i don't care for eggs, but they also probably know I would dutifully eat them with a smile and gratefulness. About then a teenager popped into my room with a cup of coffee that was quickly slipped on my nightstand and in a blink she was gone. The coffee was wonderful, and each sip brought me a little bit further out of my pity party. My husband came down and chatted with me for a few minutes and that conversation revealed that there wasn't any breakfast coming. The kids had thought about it and even started getting out supplies, but no one could decide who was going to cook, so no one did. It didn't matter. I truthfully wasn't that hungry, and the coffee had tasted better than normal. I made a choice to be happy with what I had. My husband, my children, my unborn baby with who knows how many problems, my less than neat house, and my less than dry pillow. I have been praying for the strength to embrace my life as it is, my husband as he is, my children as they are, especially peanut, to not fear his life or lack there of, but to love each moment that he is alive inside of me. So as I arose out of bed I took God's word and promises with me in my heart. The living room held all of my children and I felt such a love for each and every one of them and if God loves me anywhere near how much I love them, then I know I have nothing to fear.
Tuesday, May 5, 2009
TODAY we went to yet another ultrasound with the perinatologist from Missoula. I had mixed feelings about this appointment, excitement and fear ranked toward the top. Amazingly Nick was off work on time to make it to the appointment, Tuesdays are typically long hard days for him. We drove to the labor and delivery department at KRH and walked in the same doors you usually only go through to take the final steps in bringing your baby into the world. We were told to wait in the waiting room and our doctor would be out shortly. The waiting room walls were covered in perfect portraits of perfect babies and without saying a word to eachother, we knew, we knew the other was crying out for our baby to be like those, not even for us, but for him. A woman walked in looking like she was in labor, others came in with big smiles and teddy bears to greet the new additions to their world. We tried to smile at them and for them, but our insides were being turned inside out with fears for our baby boy. FINALLY the doctor came and got us and lead us into a room and told me to go ahead and get on the table. He started the scan and it was only seconds before our sweet little boys face appeared on the screen, so clear and perfect to us. I asked if it was 3d because it looked like a pudgy little baby face. He said it wasn't 3d, just a good shot! During the last ultrasound one of the doctors concerns was his mouth didn't appear able to close, it was always open, well these little lips were closed and looked perfect to us. (maybe we are partial, who knows) The dr then scanned more, measuring the baby's head, which measured right on track. Then to the most important... the chest measurement... it was perfect! The heart was also perfect size and a good ratio to his chest. A lot of times with the lethal skeletal dysplasias the heart takes way over it's share of the chest. This was the measurement I had been praying for and God has been so faithful. The ribs looked good, and really everything was near perfect until he got to the legs. Poor lil peanut, one of his femurs is quite bent, and both femurs measure short still, BUT they have both grown a lot since our last ultraound. It's a good sign that they are continuing to grow. The lower legs are worse than the upper legs in growth and are even further behind. BUT they HAVE grown since the last ultraound as well. The arms look better than the legs, the upper arms again are better than the forearms, but he is growing and his arms look to have good movement. He opens and closes his little hands and moves them about freely. His feet still appear to be clubbed, but this is something that they can fix. At the last u/s the dr was concerned about the babies pinkies being curled in and this time they appeared perfectly normal. Another answer to prayer! I have been praying so much for specific healings and can't help but rejoice in that they have happened. We are so GRATEFUL to all of you that have prayed for our baby. GOD IS LISTENING!!! So you cannot stop now. Please keep praying for his legs to grow and straighten! The same for his arms! Pray for continued growth of his chest too. We accept our baby and will love him just as God gives him to us, we just want him to live, and if we are granted that, we want him to be comfortable and happy. Thank you Jesus for the work you are doing in our lives even now. Today I got the only mothers day present I need. HOPE. Hope for our babies life. The doctor even said, he looks like a normal baby, except for his arms and legs. That may not sound like much to you, but to me, that was BEAUTIFUL! He said that it's hard to say but things are pointing towards a non-lethal dysplasia. There are still a few test results we are waiting for. They will be another two weeks. Ughh! They are also going to cost 1500.00 ! We are hoping the insurance will cover a portion of it, the dr said they probably won't want to, but he will write a letter indicating the need for the tests and that might help to get them to pay. THANK YOU ALL FOR PRAYING... PLEASE CONTINUE.... GOD IS AT WORK AND YOU ARE A PART OF THIS MIRACLE.