Our miracle.

Get ready this is a long post……but I have so many things to say…..

I have to admit that I am amazed to read so many responses left for Ivey. I am even more astonished at how far across the world she has traveled via the internet. It is humbling and I am so grateful to have the opportunity to share my sweet girl with you all. She is a miracle – literally.

As Ivey’s mom, it has been exhilarating to share the excitement of Ivey’s ‘new’ eyes with everyone. Her beautiful green eyes have come at one of the best possible times. I know that everyone is happy for her; however, I have done a poor job of explaining ‘why’ we are so excited about her eyes. You see, if you are new to Ivey’s life, eighteen months ago when she was born, she had a pretty rough start. And for the past year or so, she has diligently battled several medical complications and hospital stays. This past April, Ivey turned one and we had a HUGE celebration. We celebrated her life because medical opinion suggested that our Ivey would never live to be one. That small feat, living, has been only one small accomplishment that contradicts medical statistics when it comes to Ivey. Again, she is a miracle.

As most of you recall, Ivey was a surprise. We never suspected any complications until she was born. Her life began with much trivia. A cleft lip and palate, heart defect, microcephaly, a thin corpus callosum, severe contractures, anophthalmia, and other small things here and there were unbeknownst to us in the beginning. As time went by we began to learn more about her diagnosis, which is extremely rare, mostly from our own experience. Miracles do happen. You have witnessed Ivey in pictures and video contradicting assumptions about her. Chromosomes may be small, but they are packed full of punch, but no one knows a definate end result. Part of Ivey’s 21st chromosome has been deleted, which leads us to where we are and her future.

In the beginning of this journey with Ivey, we were subject to many unknowns about her and her diagnosis. Not one of her specialists has ever been privy to experience this particular diagnosis, and we have some very experienced – great doctors. So, most of Ivey’s future is up in the air; anything is possible, and she is exceeding all of her expectations that appear on paper. Once again, she is a miracle.

Some of you may remember the days when Ivey had an ng tube running down her nose to eat, which she loved to pull out. She threw up constantly because her stomach is smaller than average and we were constantly forcing food down her trying to sustain her. For a while there she was considered as ‘failure to thrive’. Her stomach has not changed, but now she has a g-j tube (or mickey button) in her stomach. All of her feedings are pumped into her J-tube bypassing her stomach, thus, no more throwing up and no more failure to thrive. Ivey will also have mental and motor delays resulting from microcephaly and her thin corpus callosum. There is no means to determine just how severe her delays (mental retardation) will be. HOWEVER, Ivey has already surpassed any speculations about her development. She has accomplished more in one and a half years than she was expected to accomplish in her lifetime. So as for milestones, that is why we go overboard. She wasn’t supposed to meet those goals at all. And as for her heart defect, we forget that she even has one. Oh years from now we will deal with it, but for now it is completely in the back of our minds. We visit her cardiologist once a year, and keep going. I would say that pretty much brings us up to speed on everything except her trach and eyes.

Next week marks one year with her trach, October 27th. The trach came completely out of left field for us. In one since, it is a God send; in another since, it is the hardest and biggest thorn ever in my side. Most people have never seen someone with a trach let alone experience everyday life with one. All I can say is that they are constant, non-stop, upkeep. Subconsciously, I listen for Ivey’s cough and sounds of distress, even in my sleep. A tracheostomy is plain ole hard work. I can not imagine what it would be like to be the one with the trach. Nevertheless, Ivey’s trach saved her life. The ENT said a couple of more weeks without it and Ivey more than likely would have died, and there would have nothing I could have done to stop her death. So last year, miraculously, she could not be intubated for her cleft lip surgery and received an emergency tracheostomy.
Her life was saved.

One year later, Ivey is doing awesome with her trach. Just yesterday she pulled it out and silently laughed. I do miss her cry and much of her laughter, a trach silences a baby except when she has her passy miur valve on, but we take the good with the bad. The doctors suspect that we will begin the process of decanulating Ivey (removing her trach permanently) come spring – after sick season. That brings us to Ivey’s eyes.

God gave me Ivey. Who am I to change her? But I have allowed it. Over the course of this year, Ivey has undergone several surgeries. The hardest thing that Matt and I have EVER done is hand our baby girl over for surgery. The moment where the nurse takes her from my arms is excruciating. Each time that it has happened, Ivey has been an extremely medically fragile little girl. We did not know if our baby would come back to us. Ivey survived her lip surgery, palate surgery, tracheostomy and insertion of her mickey button, but we did not know if she would make it home. But, she did. A miracle.

Ivey’s blindness has been a less consuming part of her diagnosis. Oh, we are worried about doing all the right things to help Ivey excel in this world, and her blindness is who she is. Ivey’s life is not challenged because she is blind or because she is missing that particular organ. Yeah, remember, she is missing what most would consider a major organ. Ivey can live without her eyes. So, we move on. Thank the Lord we are through with conformers.

Ivey's eyes are a moment in time associated with happiness. {No pain, hurt or fear exists}

For me personally, I got to experience a pseudo-moment with my baby girl. As a momma, the first memory I have with my boys is the moment when they were placed in my arms all wrinkly just seconds after birth. The moment I looked at them and they looked back at me. A year and a half later, I got that pseudo-moment. Oh, I know Ivey can’t see me, but there was something about looking down at her that reminded me of those moments with my sons. It reminded just how much of a miracle she is. And, she is a miracle!

Why green? Simple. My eyes are green.