What’s in a name?

It’s been a week since last we posted, and we’d like to take a moment to update everyone on where we’ve been and what we’ve learned over the last few days. When last we posted, we were waiting until we could get an amniocentesis to determine baby’s gender and get a rough diagnosis of what we were dealing with.

On Tuesday, we went back to the Legacy Emanuel Maternal Fetal Medicine clinic for an amniocentesis, and to meet with the Fetal Care Coordinator, Sonja, about all the services Legacy has to provide for people in our position and for children who are born with some distinct challenges. Despite having heard some disquieting stories about gigantic needles and the doctor’s warnings about cramps and other unpleasantness, the amnio went very well. Stephanie says the needle was less uncomfortable than the innumerable blood draws she’d already been through for all of the cancer treatments and testing from five years ago or so. The doctors told us that the tests ought to have the gender and at least a rough idea of a diagnosis in just a few days.

The meeting with Sonja was fantastic – we are blessed and overjoyed that Legacy has a very, very well developed program for people who find themselves as expectant parents of just about every form of special needs child imaginable. The first thing she did was apologize for not having read through the pages and pages of information in our file – she mentioned that the office was a little busy right now. Sonja said that her office was currently involved with somewhere between 50 or 60 families – a revelation that came as somewhat of a shock to us. It was a reminder that we are not the only people to face impossible odds with the life of a child on the line.

That said, the office has a wonderful partnership with Randall’s Children’s Hospital, and the office is prepared to pretty well do whatever they need to do to meet our wishes and desires. Sonja even said she’d put us in contact with the counselors at Randall’s to help us talk with our other children about what is happening and what will happen with baby. We’re so thankful that the hospital is willing to work with us, and not hold expectations of what we will do with this child or how we will address the issues that will inevitably crop up. They are very much supportive of allowing parents to determine what’s best for their child, and also helping parents remember their baby with photographs, notes, or other mementos, whatever the parents like.

Finally, that brings us up to date. This morning, Stephanie received a call from our Genetic Counselor with the preliminary results of the amniocentesis.

Firstly, the results find that there is definitely triplets in the 18th chromosomes – meaning this baby has some form of Trisomy 18. There is a deeper set of tests that are being run in order to determine to what degree baby has Trisomy 18, but that will take another week or so to hear back on. The counselor said that it is most likely that baby has the most common form of Trisomy 18, which is where every cell in baby’s body is affected by it, but the deeper tests will verify if this is the case or not.

Secondly, we were told that baby is in fact a little boy.

The gender was hugely important to us, because we both felt like it would allow us to name this baby, which we believe is the first step in making baby part of our family. We don’t want our son be something to be swept under the rug, viewed as an unfortunate episode in our family’s history that we simply don’t talk about. We want Evelynn and Sienna both to know that they had a brother, however briefly, and that his tiny life was precious to both of their parents. We want them both to know that they will meet their brother eventually, and that it’s perfectly acceptable to be sad that they can’t get to know, love, and play with him here. Above all we want them to know that his life was just as precious to their Creator and King as anyone else’s is.

20161007_204154We’ve decided to name our son Isaiah. When we first were discussing creating this blog, a verse of Scripture popped into my (Dan’s) head: “Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert” (Isaiah 43:19). We very much feel that this is a wilderness we find ourselves in, and we have no idea where we’re headed or why we’re headed there. At the same time, paradoxically, we believe that God is absolutely charting the course for our family.

I remembered a second passage while putting this blog together, also from Isaiah, and it pretty well perfectly summarizes why we like the name:

Why do you say, O Jacob, and assert, O Israel,
“My way is hidden from the LORD,
And the justice due me escapes the notice of my God”?

Do you not know? Have you not heard?
The Everlasting God, the LORD, the Creator of the ends of the earth
Does not become weary or tired.
His understanding is inscrutable.

He gives strength to the weary,
And to him who lacks might He increases power.

Though youths grow weary and tired,
And vigorous young men stumble badly,

Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.

-Isaiah 40:27-31

We have always prayed that God would be glorified in all that we do as a family. I must confess I have no idea how God is glorified through the death of the person who’s the closest to unstained innocence as it is possible to be on this earth. I don’t know what we’re supposed to be learning, or what God expects for us in this stage in life. All we can do is hold on to the promises He’s already made:

For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me. I will be found by you,” says the LORD.

-Jeremiah 29:11-14

Again, we could never thank everyone enough for their prayers, support, kind words, and gifts. It’s all been a little overwhelming.

If you’d like, we could still use prayer:

  • Calming down enough to truly sleep has continued to be very difficult for both of us. When it’s quiet, that’s when the worries, concerns, fears, and emotions are the loudest.
  • Wisdom in creating the care plan for baby Isaiah – there are so many things to weigh, determine, and decide, we want to do what’s best and what’s right.
  • Peace for all of our hearts, and strength for all our spirits. Stephanie, Dan, and Evelynn are all facing challenges in processing such difficult circumstances, and the challenges each faces are different. We have all accepted that God has chosen to call Isaiah home, but that doesn’t necessarily remove the fears, feelings of inadequacy and guilt, or the sadness.

Thanks for bearing with us – we’re not sure how the next few months will go, but we are sure we couldn’t do it without you all!

With Love,

Dan and Stephanie

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5 thoughts on “What’s in a name?

  1. Words pale and fail us at this unbearably sad and heartbreaking time. Just please know we have you in our hearts and prayers. Love, Uncle John and Aunt Barbara

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  2. Dear sweet Isaiah…may the sounds of the heartbeat of your mom; the deep rumble of your father’s voice; the laughter of your sisters, be indicators from God to you of how much they love and care for you. Many of us love you and pray for God’s best for you and your family.

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  3. Our Lord has given you and will continue to strengthen you through this desert in your life. Isaiah is a wonderful name. God bless!

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