Thursday, September 6, 2007

Not much to report

We had an appointment yesterday with Dr. G and unfortunately I don't have much to report. He explained to us again that the gene mutation they found looked similar to Thanatophoric Dysplasia but they had never seen anything like it before. They took blood from both Skeet and I and were just going to send us home. I had gone to the appointment thinking I would be able to see my little girl so I pushed a little and Dr. G finally agreed to do an ultrasound. He did mention that if it looked like Skeet or I were carriers of this gene mutation that they would probably stop doing any ultrasounds and would just "leave us alone". He also said that although he can't say 100% that it is lethal, he thinks that it is. I have to say that I am a little bit upset by his bad attitude the whole time we were there.

Luckily the tech that did our ultrasound was very nice and I felt comfortable asking her some questions. Avery was, once again, being very shy and was curled up in a ball in my pelvis. We got some great shots of the top of her head but couldn't see much more than that. We did see an arm and from the measurements she took her humerus was only measuring 14 weeks ( I am almost 27 weeks) which means it hasn't grown at all. This made both Skeet and I a little sad. I have been praying so hard that she would grow, even if it is just a little bit. Measurements of her chest and abdomen were also taken but from the position she was in I don't know how accurate they really were. Her heartbeat was at 152 when the tech checked and to me it looked like her chest had some room for lungs to develop, but maybe I just saw what I wanted to see. We did get to see her face and her cute little nose and lips for just a second, but like I said the position she was in made it almost impossible to see anything. One thing I was curious about was my fluid levels and the tech assured me after measuring them that they are normal.

After she was done the tech went to get Dr. G to see if he wanted to do any additional measurements. He finally came in and I could tell he didn't really want to be there. He zoomed in on her skull and he and the tech talked about seeing something in her brain, but I didn't even want to ask. He then mentioned that her head looked like it was abnormally shaped. When he looked at Avery's heart it looked to be beating extremely slow... even slower than mine. He said "it looks like we are losing her" without any emotion at all. I couldn't understand how her heart could go from beating just fine to almost not at all in just minutes. He moved the wand around and her heart looked fine again. So he blamed the software on the ultrasound machine! I was furious!!! After everything we have been through, he suggests that we are losing her right then and there without an ounce of emotion, then takes it back like it is nothing. I wanted to scream at him... I still want to scream at him. I wasn't ready to lose her yet and I was really starting to panic. So anyway, he ended the appointment saying that we will just wait and see what our blood test shows before doing anything else.

So we play the waiting game again. I have a feeling, and have somewhat accepted, that we won't know sweet Avery's fate until she is born. Skeet and I discussed it on the way home and have decided that we will stick with Dr. Sanders and have Avery in Cedar city. I truly believe that if she is going to make it, it won't matter which hospital she is at. And, if she doesn't make it, I would much rather have her close to our families so that anyone that wants to meet her can be there. I feel deep down in my gut that this is the right decision, and am relieved that Dr. Sanders will be delivering her as we had originally planned. We are very comfortable with him and know that he will be sensitive to our situation and supportive of our decisions. I will see him next week for a prenatal check up and will discuss a birth plan with him. Hopefully he will attempt another 3D ultrasound, I plan on standing on my head before the appointment.

Again, I want to thank everyone for their kind words, thoughts and prayers. Skeet and I have been blessed with amazing families and anytime I start to lose hope I know I can turn to them. They are constantly praying for us and truly believe in the power of prayer. They have been keeping me strong and I want them to know how much I appreciate all of them. I feel Avery move on a daily basis and I cherish every little movement I feel. I want you all to know that whatever happens, we will always remember your kindness and will be forever thankful for it.


Anonymous said...

In our experience, we found that when the doctors did not know or could not figure out what was going on, they told us the worst, or even avoided us altogether so as not to have to deal with our questions. I think that it is difficult for doctors to admit that they just don't know, as our society has labeled them as "all-knowing". We have found throughout Brandy's pregancy and Bryan's life that doctors often do not know, and sometimes make decisions and guesses that are not correct, even detrimental, because they do not want to admit that they truly don't know.

Keep having faith, and we will keep praying for you, your family and baby Avery. Godspeed.

YaYa to Bryan

Anonymous said...

Candi, I have been anxiously watching your blog for news. I am so sorry that your experience has been so disheartening for you and your husband. Sounds like Dr. G needs to go back to "bedside manner school." I am still praying for you and for Avery. Miracles happen. I have seen it firsthand.

Owen W's grandma

The Valiant Family Updates said...


Again, you can give a lifetime of love to Avery if that is what is to be-God is being brought such glory by PRECIOUS SWEET Avery's life, whether it short here on Earth or otherwise (which I KNOW how badly you wish it to be otherwise). If you must see the dreaded Dr. G again, just witness to him and show him the love of Christ and your faith that he can't rattle.

I know the cruddy stuff they "diagnose" but again, ultrasounds and tests are mysterious things and when they told me Owen would die and he had a funny head shape and too small a rib cage and every other thing-I BELIEVED THEM!!!

They were wrong! I thought to myself when people said how they were given fatal dx etc "glad your story turned out ok, but I've seen with my own eyes the problems they speak of-

I let them rattle me.

I am so sorry for this pain you and Skeet are going thru.

The waiting is horrendous.

I still wait today-but I am so grateful the Lord spared my Owen.

I pray He spares your Avery too-but if not, a lifetime of love packed into the moments, hours, or days is what you'll have waiting for her.

BTW, when is your due date?

Hugs and fervant prayers! ~Renay

Anonymous said...

Candi, My best friend and sister. there are no words that I could say to make you feel better. I love you and I am praying for you. I know this is so hard right now. I love you and I am here for you. You know that I will ALWAYS be here for you.
Love You Kate