"Worrisome, but not hopeless"

Those are the words Dr. Gien told me yesterday after the MRI and the echocardiogram.

I don't really know where to begin, so I will just state the facts as of now:
-The MRI showed she has a severe diaphragmatic hernia: half of her liver is up in her chest pushing her heart over to the right side of her chest, causing her right lung to be significantly smaller than it should be. Her stomach and intestines are also herniated into her chest.

-The echocardiogram (basically an ultrasound of her heart) showed she also has a heart defect known as Ventricular Septal Defect (VSD) and a coarctation of the aorta. Ellery's "left heart" is smaller because of the VSD, because she has had less blood flow to the left. As the fetus grows, a wall forms to separate the two ventricles. If the wall does not completely form, a hole remains. This hole is known as a ventricular septal defect, or a VSD. She also has a narrowing at one part of her aorta which is called coarctation of the aorta. VSD is a very common type of heart defect and is treatable with surgery. However, it becomes more complicated when you throw her CDH into the mix.

-she will have pulmonary hypertension and hopefully that will go away before she leaves the NICU. Otherwise she might have to be on oxygen and medicine for several months and/or a year.

-after she is born they will want to perform the diaphragmatic surgery within the first 3-4 days (so long as she is responding well to treatments). The sooner they can do the hernia surgery, the sooner they can fix her heart.

-after she has healed from her diaphragm surgery she will then have open heart surgery to fix her VSD.

I am overwhelmed by all of this information & feeling emotionally drained. After I had the MRI and echo yesterday, Bryan & I were able to meet with the heart specialist and with Dr. Gien. He told me that it was just another hurdle for her to overcome, but that it was not hopeless. I also read that 40% of babies with CDH also have another complication and of the 40 percent, 65% of those have a heart defect. So, it is somewhat common- just really unfortunate. I am just a little sick about the fact that my brand new baby will not only have to have hernia surgery, but also open heart surgery.

The next step is for me to come back to Children's in 4 weeks and have another ultrasound, MRI, heart echo and meet with the heart surgeon, pediatric surgeon and my team of doctors again. What they want to see in 4 weeks with all of the ultrasounds, etc is that her heart is growing along the lines it should be. So, that's what we will be praying for.

I just want to thank all of your for your comments on my blog and facebook and for all of your prayers in our behalf. The comments really do help and boost me up and help me to feel like I have a large network of supporters through this...so thank you.

Answered Prayers

For the past six weeks Bryan & I have been praying for Ellery's lungs to grow and for her liver to move out of her chest. Today I had a high resolution ultrasound and there was so much good news! Six weeks ago Ellery's lung was at a .6 Lung to Head ratio and today the Doctor said it looked, at worst, to be barely under a 1 (which is much better) and he thought it could even be well above that! Also, he said he didn't see much liver in her chest at all!! Six weeks ago I was told it looked like the entire liver was in her chest. What a great day! I know it is because of all of your prayers that wonderful things are happening! We just hope things will continue to improve and she will be strong.

I also got to see a 4D image of her face & she is beautiful. I just feel so much peace and am so much more hopeful for her arrival. I know that I am working with the best doctors and am in the right place for her delivery. The Doctor today who did the ultrasound is named Dr. Hobbins and he is a "world leader" in maternal-fetal medicine. He has been practicing for nearly 40 years! He told me that if he was having a child with CDH he would want it delivered at Children's Hospital.

I feel so blessed and really am so thankful to have such a loving Heavenly Father that hears and answers prayers. Thank you for all of your prayers & please keep us in them.