Ultrasounds and Living Day to Day

Well, we were happy to see our baby girl today. Happy to hear her heart beating strong and steady. She moved quite a bit, which is very much like her, so we didn't get many good photos like I had hoped. A snapshot of her profile and her little feet were about the only two worth sharing. Our ultrasound technician said that her kidney's were working great and there was plenty of fluid so that means she's been getting the nutrients she needs. As we had predicited, Rosalie is a little smaller than she should be. I'm 28 weeks and she is measuring at 25 weeks. She's a tiny little butter bean weighing about 1 lb 1/2. She should be twice that, but we were prepared for that reality. I will say, that our oldest, Lorelei, has been praying every night that "that thing, it's called a cyst, in Rosalie's head, will go away, God, heal her, please." Now, again, our children don't know anything about what's really going on. They only know what they heard the first ultrasound appointment and that was that she had a cyst on her brain. And looking at pictures of her brain today, the ultrasound technician said she saw no traces of it anymore. It was gone, praise the Lord. Even though the absence of it changes nothing in terms of Rosie's diagnosis, it was a little break in the rain for us. After the ultrasound, we waited to see the doctor for my routine visit. The reality I'm never prepared for are the conversations that have to take place from here on out. I don't like talking, let alone thinking, about how far we are willing to go to keep our daughter alive once born. I feel tears immediately falling when she tells me that Rosalie's lack of weight gain is now concerning. Concerning that she might not make it full term. Concerning in the fact that I might lose my baby before holding her. I let the tears fall as I look at Chris and stare into his eyes communicating without words how much I hate this. This is not normal. This is not what the last few months of pregnancy are supposed to be like! I should be shopping for sweet little clothes with ruffles on them! Creating the perfect space for her precious head to sleep at night! Not this. Not living day to day wondering if it's her last. I left the appointment feeling weary and defeated. Driving home, as the kids are screaming and yelling and arguing in the back, I hear a song I recognize on the radio. I couldn't tell you the name, or even sing it in it's entirety, but I knew one of the lyrics well and it instantly warmed my heart. The lyrics come from Isaiah 40:28-31.... "Have you not known? Have you not heard? The everlasting God, the LORD, The Creator of the ends of the earth, Neither faints nor is weary. His understanding is unsearchable. He gives power to the weak, and to those who have no might He increases strength. Even the youths shall faint and be weary, and the young men shall utterly fall, But those who wait on the LORD Shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint." Isn't that just like our God? Giving us hope when we need it and constantly reassuring us of his unfailing love? After hearing the lyrics, I went home and opened up my bible and read these verses and just felt a little more at peace. It gave me the strength to finish my day. To play with my kids outside with a smile on my face. Enjoying their laughter and cherishing it. Every day from here on can be hard if we let it. But I'm learning to trust in Him, that he will direct my life, my circumstances, my day to day. He is capable. And He is more than capable of caring for my Rosie whether it's watching her grow here with us or holding her in His arms in Heaven.

Pregnancy: 28 weeks and Grateful

I am 28 weeks today. Roughly 7 months. If you read up on trisomy 18, you might find that a lot of babies with this fatal chromosome stop growing around this time. I'm not sure why, they just do. Our doctor had told us of this previously, so we were aware. We've been aware for a while that Rosalie could leave us at any time. My prayer is that she won't. That God will allow her to make it to and through delivery so we can hold her and tell her how loved she's been thus far, and how much we will always love her. Today pours out an extra blessing because we have an ultrasound to look forward to in a bit. We are excited to see how much she's grown and just getting another peek at our precious little girl. Trisomy babies normally measure smaller than others, and I have prepared myself for that. I just hope to see a strong heartbeat this morning. As far as my pregnancy has gone, it's been pretty much like any other. She moves around all the time, especially to music, gets hiccups and seems to respond to her brothers and sister's voices! Even though this pregnancy is far from "normal", I/we are so grateful. Grateful for the blessing of another little one. Grateful that God would trust US to go through this trial. Grateful that my God forgives me when I'm crying and full of unbelief. Grateful that my God loves me and knows me and won't leave me alone in this.

Our Story

As a mother, one of the most exciting moments during pregnancy is the long awaited ultrasound, where you finally get to see how much your darling baby has grown and hopefully, fingers crossed, find out the gender. This pregnancy, our family was praying for a little girl. A sweet little girl that we could dress up and send to ballet with her older sister. We would call her Rosalie Hazel. The momentous day came around for us in December last year, (2012). Can that really only have been a month ago? The ultrasound seemed to be going great. We were elated at the news that we are carrying a baby girl and that all the fingers and toes looked like they were where they were supposed to be. Being the worry-wart that I am, I constantly studied the technicians face as she continued taking photos of our Rosalie. I noticed that she took quite a few more of her brain than what I thought to be normal. She didn't say anything in the end but "congratulations" and sent us into the exam room for what I thought would be a routine check up. One of our doctors came in and explained that Rosalie had a cyst on her brain. He went on to say that a lot of babies have them and they typically go away on their own by the third trimester and that we were not to worry. But to be on the safe side, we needed to see a maternal/fetal specialist and have a level 2 ultrasound. Of course, we were upset. Our special day had been tainted with this news and now we had to wait for this new appointment to check on our baby girl? Luckily, we didn't have to wait long. The very next day, we were scheduled for our level 2. We both went in nervous, not knowing what to expect out of this visit. I can tell you the reality of our ultrasound findings was not what I had thought. They discovered a heart defect in Rosaile that wasn't picked up in the first one. AVSD, Atrioventricular septal defect. In other words, our sweet little baby has a hole in her heart that would require open heart surgery at 3 months old to fix. Sitting there, hearing that news, Chris and I just looked at eachother and said.. "Ok. Ok." In our minds, this was happening and it was scary and unknown and not at all what we were wanting. But we know our God and that all things work together for the good of those who love Him. We would trust Him and meet the pediatric cardiologist and we would push forward and get through the surgery for our little girl's heart. Our doctor went on to say that with these type of defects, (the cyst and the heart defect) that there was a 50/50 chance that she might have down syndrome. In all honesty, that didn't and still doesn't matter to us. He went on to say that there was a simple blood test that we could do, instead of an amnio, that would tell us if she did indeed have downs, and that it was 99% accurate. We agreed to do the test if only so we could prepare ourselves in advance of what life with a down syndrome child would be like. We would hear the results in a week. That week went by, slowly. I was fretting more about heart surgery for my baby more than her having a genetic defect. One extra chromosome didn't matter to me. Or so I thought. Chris took the call, thankfully, that day. I wouldn't have been able to handle the conversation. He showed up at home early from work, and I instantly knew that something was wrong. With tears in his eyes, he said, "We need to go talk upstairs." He grabbed my hand as he lead me up. I kept thinking "If she has down syndrome, Chris wouldn't be so upset like this. What is going on?" And then it hit me. I looked up at him, mid-stair, and cried, "She has trisomy 18, doesn't she?" (Trisomy 18 is a fatal chromosomal abnormality). He nodded yes, pulled me into our room onto our bed and we both collapsed in a crying fit. Holding one another, our hearts breaking for our little girl and the knowledge that we won't get to raise her. I remember asking, "Why, God?! Why our little girl?!" This wasn't supposed to be happening. This couldn't be happening. The doctor said that this wouldn't even be an option in his opinion. Our daughter looked perfect otherwise in everything besides her heart. We were preparing ourselves for a life with a child with down syndrome, not a life without our daughter. Weeks have passed since the news that shattered our hearts. We ended up undergoing an amnio, just to confirm 100% that Rosalie did indeed have trisomy 18. The results came back the same. I will admit that my hope was wavering. Was this it? It was all so black and white. She would either die in utero and be stillborn or she will only live a few hours, maybe, if we're lucky, days. That's a hard thing to try and accept. I will say, that Chris nor I, have ever been mad at God that Rosalie has this fatal chromosome. If I'm honest, it's drawing us closer to Him. We are sad, uncontrollably sad, some days. But we are trying to live each day now, cherishing the kicks and the hiccups. Our prayer, ultimately, is that God will heal Rosalie completely. That we can raise our daughter, knowing God and reminding her daily that she is a miracle. If He chooses not to heal her, we pray that she will make it through delivery and that we can hold our baby girl before she goes to be with her Heavenly Father. Everyday, I wonder how we are going to do this. Say goodbye to our baby. It brings me to tears everytime. Some days to the point that I don't want to get out of bed. But I know that my God loves me. I know He loves my family. And I know that He loves my Rosalie. I can get through each day knowing that. Jesus answered and said to him, "What I am doing you do not understand now, but you will know after this." John 13:7 This blog is pretty much our "coming out". Not many people know, aside from family, close friends and a lot of our church family. Our own children don't know yet. We plan on telling them soon, we just don't feel ready yet. :/ I'm hoping that this blog will allow me to pour out some of my feelings and thoughts on carrying a baby with trisomy 18. Rosalie is our little baby. We love her and she is already so much a part of our family. As you read this, please don't feel sorry for us. Our Rosie is stil very much alive and with us and we celebrate that every day. To all of you that have been helping to hold us up this far, we love you and cannot thank you enough. I will finish this by saying... from “Jesus Calling” (by Sarah Young) I am your strength and shield. I plan out each day and have it ready for you, long before you arise from bed. I also provide the strength you need each step of the way. Instead of assessing your energy level and wondering about what’s on the road ahead, concentrate on staying in touch with Me. My Power flows freely into you through our open communication. Refuse to waste energy worrying, and you will have strength to spare. Whenever you start to feel afraid, remember that I am your Shield. But unlike inanimate armor, I am always alert and active. My Presence watches over you continually, protecting your from both known and unknown dangers. Entrust yourself to My watchcare, which is the best security system available. I am with you and will watch over you wherever you go.