20 Week Ultrasound

We spent about 5 hours at the hospital today, and needless to say I am exhausted, so I will try and give you the shortest version of what we found out today. I was prepared for some bad news, but the results weren't exactly what I was expecting. To our surprise, his heart looks like it is functioning normally, may have a little murmur, but nothing severe. His brain is separated into a left and right, but there is nothing connecting the two, so he will not have normal brain function. His kidney's are enlarged as well. It does appear that our son won't look exactly like a normal baby either. They were unable to see any eyes, just the eye sockets. He has a severe cleft palate, and it looked like another hole in his face as well. He has six fingers on each hand and six toes on each feet. It breaks my heart that I will not be able to look into my son's eyes, or be able to breastfeed him. Right now it looks as if we will induce whenever it becomes medically necessary. If we choose to induce before 24 weeks it will not be covered under insurance, but anytime after that it will. It is very likely that Eli will not make it to term, and when I go into labor it will be induced, this could be anytime between 24-37 weeks. It looks like no matter when he is born, and if he can make it through labor, Eli will probably only live from a few mintues to maybe a couple of hours.I met with a neonatal intensive care specialist who put together a team of doctors and caregivers to help me from making a birth plan to planning the funeral. It is going to be a tough tough road ahead of us, and even though Eli is very sick and does not look normal, he is perfect in my eyes. Thank you for all of your prayers and support, we need them now more than ever.

Second Letter to Eli

Eli,

On Friday your daddy felt you kick for the first time. I think that moment may have been one of the most memorable moments of both of our lives. You are moving more than ever, and that is what I am thankful for this holiday season. Every time you move everything else stops. I forget about the fact that I'm exhausted, that I'm in physical and emotional pain everyday, and most importantly that you are not healthy.When I feel a little kick, nothing else matters. I am thankful for every little toss and turn you make because it means that you are alive and staying strong. So feel free to kick my bladder or dangle from my ribs, because nothing makes me happier than feeling my precious little boy.

Love,
Momma

When I Must Leave You

When I Must Leave You

by Helen Steiner Rice

When I must leave you
For a little while-
Please do not grieve
And shed wild tears
And hug your sorrow to you
Through the years,

But start out bravely
With a gallant smile;
And for my sake
And for my name
Live on and do
All things the same,

Feed not your lonliness
On empty days,
But fill each waking hour
In useful ways,

Reach out your hand
In comfort and in cheer
And I in turn will comfort you
And hold you near;

And never, never
Be afraid to die
For I am waiting for you in the sky!

The Holidays

I have mixed feelings about this holiday season. This is my first Christmas with Jon as a married couple, and it is also Dylan's first Christmas. I feel as if this is supposed to be a very special holiday season, since it is the first one with my new family, but I'm actually feeling a little sad about it. The anatomy scan and heart echo are scheduled December 23, the day before Christmas Eve.  I was told that Eli has higher than an 80% chance to have a heart defect, and deformities are also likely. They originally thought that the main problem was a heart defect since it was so high for so long.  If this is the case, it is going to break my heart because that means that he will have less of a chance to even make it to term. How am I supposed to be happy and joyful after this? I also feel really guilty, like I am taking away from Dylan's first Christmas experience. I know that she is still really young and doesn't know the difference, but I want to be able to look back and know that I made her first Christmas a special one. It is so hard to balance my focus between everything that is going on in my life right now. My appointment is two weeks away, and I can honestly say that all I want for Christmas is to hear good news about Elijah.

17 Weeks

I'm feeling him everyday now!

Another Song For Eli

Although this song makes me cry every time I hear it, I think it is absolutely beautiful. Eli is definitely my little angel.