More news about our little angel

Well, I would LOVE to report to you all that after multiple different screenings the past few weeks, that it is just our little love bugs leg. Unfortunately it is not...

I had made a quite easy decision to change doctors from Blackfoot to Idaho Falls. I just felt this overwhelming feeling that I needed to have our angel at a hospital equipped with an amazing NICU. So last Thursday I went to Blackfoot to get my medical records. I sat in the car and was reading over them. When I got to my ultrasound results, I was astonished at what I was reading. Here is the actual report:

No fetal abnormalities were identified. The left tibia and fibula appear much shorter than the right. The left foot is small and deformed. The right foot demonstrates a probable abnormal configuration as well (most likely clubbed foot). The femurs and the right tibia and fibula appeared normal.

Spinal curvature appeared increased with increased kyphosis and the thorasic spine and lordosis of the lumbar spine of uncertain significance (this all means that instead of her spine looking like an S from the side, hers looks nearly straight, not necessarily problematic in her movement ability, but very painful). The cord appeared to be TWO-VESSEL.

HOLY SHIT!!!!!!! When my doctor called, all she told me was that the shortening of the left lower leg was confirmed. She said NOTHING of anything else. The 2-vessel cord in itself is life threatening to our little angel. At this point, I was SO glad that I changed doctors! So Monday of this week, Rayce and I went to our first visit with her, and was hit with yet another blow. Dr. Huggins sent us back for an ultrasound with her tech. And she confirmed all that we had already known. Just as we were almost done, Rayce asked about the spine, and that it seemed normal. The tech said that she didn't think so, so she started to scan again. She showed us the sacrum and said that your sacrum should be like a flattened bowl (basically this makes up the back of your pelvis, so it should be curved), but our little girls was splayed open.

Again, HOLY SHIT!!!!!! Excuse my french, but I just can't handle any more bad news with this little one. We had honestly thought that we had heard all there is to hear. So Dr. Huggins confirmed what the tech had said and scheduled us to see a Perinatologist (which we knew we were going to have to see anyway). I also now have to go in every week for the next four weeks to have a non-stress test and an ultrasound, then twice a week after 32 weeks until she's born to make sure baby is growing okay because of the 2-vessel cord. Ya know at first, I was just numb. I had no emotion for the news we had just heard. I just drove home numb. There is no other words to describe it. But my sister started texting me and asking me what the doc had said, and for the 1st time, I really had to confront the words... spina bifida. My baby has spina bifida. I don't ever want to say it again. I sit here and cry just typing the words because I never want to hear them again! The numbness is gone at this point telling my best friend, sister, confidant that my baby has spina bifida. And I just bawl. I sit in the car and cry uncontrollably for a good 20 minutes. No matter what anyone can say, I felt like I was melting away, that there was nothing right that I could do for this baby. I felt like at every point in this pregnancy where there should be a beautiful milestone, instead there is a devastating blow to the face. I just want her to be perfect.

So yesterday Rayce and I went to see the perinatologist. And once again I felt numb. I was just hoping beyond hope that there would be no more bad news. Just let any news that we would get either be good news, or just confirming news. I couldn't handle another blow to the face. I was starting to feel like a UFC fighter, that was pinned down against the fence, my hands behind my back, just waiting for the hit. But to our great surprise, the hit didn't come. We were there getting our ultrasound for nearly 2 hours. The perinatologist recommended that I had an amniocentesis. He felt that none of the defects that she is presenting are physically connected together. He said that he would like to check her chromosomal make-up, he fears that there could be an underlying problem like downs syndrome. Although he assured, and reassured us that he was confident that it isn't downs, she is showing NO physical presentation of that. After the amnio (which by the way hurts like HELL on wheels!!!!), they had me go to labor and delivery to be monitored for a few hours to make sure baby was okay and that I wasn't going into labor.

And for the 1st time in a month, Rayce and I walked away from a doctor for our little one, with our hearts not pounding out of our chests. Our tears were not flowing freely from our eyes. We finally got to walk away happy. The scans just confirmed what we already knew, and in all actuality, the doc said that the spina bifida wasn't bad at all. He might not even say that it is spina bifida. But I do go back in 4 weeks to have a follow up scan with him to check baby. I cannot tell you how happy I am today! And no matter what the chromosomes say, she is Rayce, and she is Me. She is ours, and I love her SO much! Our chromosomes made this little angel for us to love. No matter what the doctors say, or what she will look like, or act like, she is perfect to us. We will love her like no one else can. We will understand her like no one else can. She IS perfect! And we love her to infinity!

Sad month of love

(sorry it's a long post, but I felt like I really needed to get it all out!)

Well, this has been a crazy past few weeks for our little family. Three weeks ago Rayce's grandma (the one we live with) went to the hospital for high blood sugar. Now, three weeks later, she is still there, and not because of her blood sugar. She has had an overload of complications over the whole ordeal. She's had two major surgeries, a breathing tube placed twice, and now finally a trachea. As of tonight, she seems to be doing better. The nice thing about the trachea is that she doesn't have to be sedated, so she can slowly regain her strength back. We are truly hoping she is on the road to recovery. Ivory moped around the first whole week Grandma was gone, looking for "ma-maw". She would go sit in her chair and cry out her name as though Ivory was calling her to come rock her. It was so sweet and so heart-breaking at the same time. We miss her here at the house, but we know that she is where she needs to be right now.

And as if having a very sick Grandma isn't stressful enough, we have had some devastating news with our little bun in the oven. Right after Christmas, we had gone in at 18 weeks for our standard ultrasound, and all seemed well. The lady told us that we were having a girl. And of course, I didn't believe her. My pregnancy with Cayge was a breeze. I was nauseous, but not to bad. That went away at the standard 12 weeks, like everyone says it does. My pregnancy with all three of my girls, I was SOOOO sick. And not just in the morning. I had to be hospitalized with all three of them for dehydration. With Ivory it lasted from about 8 weeks clear through 30 weeks. (I honestly thought I could possibly be dying!!!!!) So with this pregnancy, it was so much like Cayge's. I was a little nauseous, but not to bad. And by the time I hit 12 weeks, that was gone. I know that they say every pregnancy is different, but I was REALLY hoping for a boy! So, on the 1st of February, we went in to have a gender check. The lady is great, and I really trust her. (A different lady than my other ultrasound). Right off the bat she asked us if we had ever had a level two ultrasound. Rayce and I had no idea what she was even talking about. So she went on, saying that baby was being really modest, and that she couldn't really see anything. She then asked if at our last ultrasound, was there any concern with the spine. We, of course, responded no. She was trying to get a picture of our little one's face, cause we didn't get one at our last ultrasound. She then went back to check the gender and asked what we had been told about this little one's leg.

Now, one thing that we were told from the results of our 1st scan was that baby was severe breech, and the feet had not been detected, but not to worry, cause that was common with severe breech babies. SO, I tell her this, and she says that it is more than just this. She tells us that our sweet little angel has a club foot. I tell ya what, you NEVER want to hear anything is wrong with your child, no matter what age they are. She also tells us that she has concern for the spine. But this poor lady says that she shouldn't be telling us this because she "legally" is only supposed to be checking the gender, so I should probably talk to my OB/GYN about all this, and hopefully she would schedule me a level 2 ultrasound.

Talk about losing it. It hit both of us like 100 tons of bricks when we got out to the car. We sat and held each other and just sobbed like babies. We had to make a few stops after this, and on the way home (about an hour later) the ultrasound tech calls and tells me that she just can't stop thinking about our case, and that she would really like to call my doc. Of course I said yes!

So after meeting with my doc on the 7th, she scheduled me for the 10th for another standard ultrasound as a follow-up to my last one. I cannot express to you how much I just wanted to see my baby on that screen, yet dreaded hearing what we knew we were going to hear. I bawled all the way to Blackfoot (which is where my doc is). I didn't want to accept what I know I will have to.

After waiting for our appointment for what seemed like eternity (really it was about 45 minutes), we went back to the room. It is such a special thing seeing your little unborn baby on that black and white screen. She scanned her face first, and we got to watch her open and close her mouth. We could also see her tongue moving around. It was so neat, but the scan had to go on. I had not said anything to this tech, I kinda just wanted to see what she would see, and if she'd say anything to us. But I couldn't, I had to ask her, 1st about the spine. She spent a good 10 minutes there, then I asked about the leg. She started scanning the legs, then just stopped. She started scanning again, then got up and said she needed the radiologist right away. I knew it. I knew it was as bad as we had dreaded. He came in and started scanning. I could immediately see the color start to drain out of his face, and if I looked at him, he would quickly dart his eyes back to the screen. So of course, I had to ask. I said, please tell me the degree of how bad her club foot is. His reply was that it wasn't so much her foot, but it was more her leg. He had showed us that her right leg and foot was completely normal. Measuring right at 25 weeks. Her left leg on the other hand, not so good. Her left femur measured the same as the right, but her tibia & fibula was only measuring about 2-3 centimeters. And also her foot, really isn't a foot, it's more just a flap of skin and un-developed bone. My whole world was crushing my chest laying there listening to him tell me this. All I could think about is why her? Why this beautiful baby girl that seems otherwise perfect? Why her brother and sisters? What did I do wrong? I feel like my body let her down, that this is all my fault. I just wanted to run out of that room. And just keep running. Not for myself, but for her. I want so badly for her to have two full functioning legs. I want her to run and jump, and dance, and twirl, and do whatever she wants, on her OWN legs.

The scan had to go on, and the radiologist told us that he could not see anything wrong with the spine. So good news. And in all honesty, I would much rather her have one bad leg then a bad spine. As I lay there squeezing Rayce's hand, I looked at the beautiful baby on that screen and decided that I was so glad she was mine. Of all the people I know, I know that I can love her more than anyone else. (no offense to you all). But I know that she was meant for me.

Now that the shock is wearing off a little, I think about the timing that this precious little girl will be brought to us. She has the most amazingly talented dad that can make that prosthetic leg look cooler than anyone else's "normal" leg. She has Cayge, Icelynn and Shylee to be her guardian while they are growing up. And then when she gets to be older, Ivory will be her guardian, taking care to make sure she is never left behind.

So I go in to my doc in a few weeks to discuss my ultrasound results. I will then be scheduled for another ultrasound (a level 2) with a perinatologist. (that's a doc that specializes in bone development in unborn infants). So as hard as it is to hear it when people want to talk about it, or just when I even think about it, we know that this changes nothing. Our lives have become a lot more challenging, but we love her just as we did before. She is our little bun in the oven, and we just can't wait to meet her.