Hello Third Trimester!

           The Christmas season is upon us! It sure is a lot different with Addie this year. She understands more, and is so full of holiday cheer you can’t help but smileJ We’ve been so busy this past month! Shopping, cooking for Thanksgiving, working, and we even managed to squeeze in a vacation to Disney World. It was such a joy to watch Addie’s little face light up as she got to meet all her favorite characters, and she has been talking nonstop about the “dancing penguins and goats” on It’s a Small World. We had a great time.

            It is now back to cold weather and reality as we settle in for the home stretch of the pregnancy. I’m finally in the third trimester and remembering all the really “fun” things that start happening (I’ll spare you the details!). Meghan is moving like crazy- we can already see little lumps and bumps on my belly as she tries to make room for herself. It’s not always comfortable, but it’s a great reminder of her presence and strength.

            We’ve had 2 more ultrasounds and our follow up echocardiogram since my last post. Her ventricle sizes were only mildly increasing until this last ultrasound in which they did have a bigger jump. Her head continues to be about 3-4 weeks bigger than it should be at this stage in her development, which is not necessarily bad since it does allow a little more room for her brain to hopefully develop. The great news is that we found her left kidney. It is smaller and lower than it should be, but it is there. One or both of them are functional since my amniotic fluid levels are normal, and we can see that her bladder is filling. We also got to see her practice breathing on the ultrasound which is pretty coolJ

            The echo today showed that her heart is in a slightly different position than normal, and that there was a “trivial” amount of fluid around her heart. The good news is that neither of these things were concerning to the pediatric cardiologist in terms of function. He wants her to have an echo after she is born to be double sure all is well, but he said he was very confident that she will have a normal exam.

            The next step is to meet with the neurosurgeon in January, and we will continue to have ultrasounds until she is born. This last one was hard for me as what had been stable for a few weeks suddenly got worse. I knew that the possibility of it getting worse was greater than it staying stable, but it is still hard to see it happen.

I have been doing a lot of reading lately- some research, and some on parenting a child with special needs. I have found great encouragement in both. We are strongly considering going to Duke University for umbilical cord stem cell therapy after she is born. You can read more about what they are doing here: http://www.fetalhydrocephalus.com/hydro/Infusions-1.aspx . The rest of this website is also a great resource for information on fetal hydrocephalus, and has lots of stories of kids with this diagnosis. I am also reading Different Dream Parenting by Jolene Philo. It is a completely awesome resource for any parent with a child with special needs of any kind.

Of course, my greatest source of encouragement continues to be my savior. I struggle with a lot of different emotions as I walk this completely foreign path but He continues to remind me that He is in control, and she is His perfect, purposed creation, and I was chosen to be her mommy- regardless of whether or not I feel up to the task.

^“Then the Lord asked Moses, “Who makes a person’s mouth? Who decides whether people speak or do not speak, hear or do not hear, see or do not see? Is it not I, the Lord? Now go! I will be with you as you speak, and I will instruct you in what to say.” Exodus 4:11-12.

He continues to instruct me on what is truth, and teach my heart what to say….She is fearfully and wonderfully made. 

Faith, mountains, and very tiny hearts.

Admittedly, I’ve been struggling lately- partly because working full time and being a mom to a toddler while pregnant is NOT easy, and being physically tired make everything more amplified. But there is also more to it than that. When something like what we are going through happens in your life, you are forced to decide what you really believe about certain things, including faith. Bear with me as I attempt to put what’s on my heart into words…

Our pastor said in a sermon a few weeks ago that trials are the time when you discover your real theology. I agreed because I thought at the time it had to do with choosing life in the face of a poor prognosis. Now I am realizing that it is about much more than guiding simple choices. Your beliefs provide the basis for your choices, and a trial will test them, but they are also continuously refined through such an experience.

When you are faced with a difficult situation, you are truly challenged to rely on yourself or to trust in God and His bigger plan.  I admit, I have not always chosen to trust. After all, that is how our culture tells us we should get through things. Be strong- self reliance is best. Turning to your “faith” is a sign of weakness, and admittance that you can’t handle whatever situation you are in. But when faced with something that inescapably affects the rest of your life, and more importantly the rest of your child’s life, for me there was no other choice than to claim His promises and stand on the only solid ground I have. So then the question becomes, what do I really believe about this “faith”?  The most well known explanation to me was Matthew 17:20 “I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘move from here to there’ and it will move. Nothing will be impossible for you”. So what does that mean? If I have enough faith that my little girl will be healed then she will? Maybe, but I know that prayers are not always answered in the way we want them to be. But what does the mountain really look like, and who’s mountain is it in the first place? Is the mountain this diagnosis? Or is my faith the mountain He wants to move? I think the answer comes in the surrender. Surrendering to His will, knowing that it does not mean that all will be perfect- it may be very far from it. But the Truth is that He is carrying us, and His will will be accomplished according to a perfect plan that I can only hope to see in retrospect. Even when my worst fears are realized, He is still sovereign.

Our pastor said in the same sermon that a trial will increase your faith and prove your faith is real. Thinking about it, what would accomplish that more completely? The miracle of answered prayer for healing? Or a very different answer- one that will prove daily that when I trust in Him, His grace will always be sufficient and His power made perfect in my weakness. I know that no matter what, good will come from this little girl’s life. She has already made me a better person. 1 Corinthians 13:2 says “if I have faith that can move mountains, but have not love, I am nothing.” I may not have this faith thing figured out, and my mountain may not move, but I know that His will, and no matter what, we will always have love.

As for the Meghan update, we had our fetal echocardiogram this week to check Meghan’s heart. Finally some good news! While the cardiologist wants to recheck things in a few weeks, for now we are “low-risk”. Praise God.

Meghan Grace

            The day we found out about the hydrocephalus we both discussed the fact that we thought we should name our little girl. I could hardly come up with anything since we had such a time trying to name Addison. The next day my husband went hunting and while sitting in a tree in the woods he decided on her name. I got a text message that said: Meghan Grace. I love the name, and I love that he named her.

Today we had a follow up Ultrasound with our perinatologist. First the good news: her ventricle sizes have NOT changed in 3 weeks (we were nearly promised that it would just continue to get worse). We believe this is a SERIOUS answer to prayer- Praise God, and thank you to everyone that has been so faithfully praying for this baby and for our family. We know that it is still severe and the prognosis remains unchanged, but we are very thankful for small miracles at this point. Our doctor said it was encouraging that we may make it to 39 weeks if all goes well but that we will still need to have a C-Section as her head is still measuring 2-3 weeks larger than it should be (if anyone knows of any places to get cute hats for newborns, let me know). The not so fun news is that at our first scan we were unable to visualize her left kidney, but that issue was mostly overshadowed by finding the hydrocephalus. When he checked again today we were told that she doesn’t have a left kidney, and that there is no blood flow through an artery to suggest that one is there. As long as the right kidney is functioning properly and there are no other urinary abnormalities this will hopefully not affect her at all- so that is good. However since we now have “two anomalies” he is sending us to see a pediatric cardiologist to have him check her heart. At both ultrasounds we’ve had her heart looked good, but as defects tend to travel in groups he wants to make sure.

Its been 3 weeks since we learned of Meghan’s condition. I have had some time to think, process, and accept the diagnosis, and all the unknowns that come with it. I have really learned to begin living one day at a time. Sometimes one task or one emotion at a time is all I can manage, but I know that the Lord is carrying me through all of this. He’s helped me see clearly something I realized a long time ago but never confronted. Tomorrow is not promised to any of us. My own life events plus working in the medical field for 12 (gulp) years has taught me that bad things happen to people- every day. People get sick, loved ones die, and unexpected tragedy befalls people more often than any of us would like, but that is the reality of living in a fallen world. We could have been given a healthy child, but there are no guarantees at what her life would have looked like. Life is precious, and very fragile. It would be very easy to have allowed this knowledge and experience to consume my hope a long time ago, but I believe my faith has kept me from doing that. Now more than ever I am trying to take each day as it comes, savoring the sweet moments I am given with my daughter and my family, and being very thankful that for now, I can carry this little girl safely inside me. Her life has already blessed me so much, and she is not even here yetJ

Thank you to everyone that has sent us cards and emails with such kind, encouraging words. Thank you to our church family who continues to lift us up in prayer. And thank you deeply to my friends and co-workers who have been so supportive during the last 3 weeks. Your friendship has been overwhelming, and means more than you know.

The Glass is Half Full

A few nights ago I was giving my daughter her nightly bath. I am absorbed in my thoughts as we now have so much more to think about- so many things that we never thought we would have to worry about. She was playing like any other 2 year old, and I’m observing her pour, splash, and laugh her way through the basics of physics. At one point she pours a little out of her cup, then a little more, then looks up triumphantly at me and proclaims, “Mom! The glass is half full!”

 I am continually humbled and amazed at all this little girl can teach me. She has made me a mother, a better person, and is preparing me for the rest of our lives together. I’m not so sure me teaching her the ABC’s is doing her justice. For that kind of exchange, she deserves quantum physicsJ In a time when I am so tempted to focus on and prepare for the worst, the Lord used her to remind me to focus on the positive things. This little girl is alive, we are not alone in this journey, and I have this beautiful little girl in my life who is going to be a fantastic big sister. It doesn’t mean I won’t continue to struggle, but there are certain truths that I am holding on to.

We had our MRI Wednesday (which was a very surreal experience in itself) and met with the pediatric neurologist yesterday. They confirmed the ultrasound results, and told us that the condition is indeed severe for her being so early along in development. The “good” news is that we didn’t find anything unexpected. Her brain tissue is being seriously compressed by all the fluid, and he said the best we can hope for right now is that it doesn’t continue to get worse. We will follow the size of her ventricles with ultrasound every 3 weeks. We still have no way of knowing what the outcome will be for her. She will have a shunt after she is born to redirect the fluid, and we will watch her development in the first year. He said this will give us a better idea of what her disabilities might be as we won’t even know right at birth.

My whole life I’ve been a hopeful pessimist. “Hope for the best, but really, expect and prepare for the worst because after all- you never know” is probably how I have approached most situations in life, even those that haven’t happened yet. My husband calls this worrying. I call it being prepared. I saw worrying as a part of the planning process- an attempt to prepare for all that might be. As my fears quickly turned to reality last week, I am realizing that I can do all the “planning” I want, but things are now completely out of my control. I am learning how to take things one day at a time, and continually lean on my faith for support. I had the opportunity to speak to a group of 250 people last night about our recent experience and belief that every child is purposed by God and deserves life. We have already seen how God is using this little life to accomplish His purpose. Addie may think our glass is half full, but I am assured that “my cup runneth over” (Psalm 23:5).

Thank you all for your responses of love, prayer and support. We have been completely overwhelmed with kindness. Please know that you are a blessing to our family.

Welcome to Holland

Let me preface this entire blog by saying I never thought I would be a blogger. Ever. But as the old cliche goes the only thing constant is change so here goes...forgive me if I am not as eloquent as I would like to be:)

It's been a little over 24 hours since we were surprised with 2 things: 1) It's a GIRL!!!! and 2) she has severe ventriculomegaly. This basically means that for some reason, the fluid made by the ventricles of the brain is not draining properly and is now accumulating inside her brain. This puts pressure on developing brain tissue. If this happens to an adult, they quickly have problems. However as babies skulls are not yet fused, the head can accommodate the swelling and continues to enlarge until the pressure is relieved. This can sometimes be mild, but in our case we were told that as it is very severe this early in her development, the prognosis is "poor".

Working in the ER, I see bad things happen to people almost daily. The world is full of situations we cannot control, and I have spent a lot of time leaning on my faith to stay grounded when it would be very easy to give in to fear. Finding out there is something "wrong" with the child you are carrying is a feeling I can't even begin to describe. When you find out you are pregnant you have hopes, dreams, and plans for your baby....You also have fears, but thankfully for most people those fears are never realized. Unfortunately for us they were, and coping with the significant change in cicumstance and having so many unanswered questions is very hard. Everything has just only begun to sink in. I spent a lot of time on google last night- not always a good thing, but I did find many stories that gave me hope. Yesterday was a day that definitely changed our lives but we believe that this baby is already a miracle, and are hopeful that through this process, we may get to witness a few more.

We have a fetal MRI scheduled for next week, and then an appointment with a pediatric neurologist at the end of the week. We understand that she will need a shunt placed in her brain very shortly after she is born to drain the excess fluid.

Joe and I haven't had much time to process all that this will mean for our family yet, and we will be forced to take things a day at a time since we will only have small pieces of information until she is actually born. BUT, we believe that we serve a God who is faithful, loving, and capable of miracles. We really appreciate your support and prayer for our little girl, and her big sister. Know that we are incredibly grateful for our family, our friends, and our church. We'll keep you posted on her name...

Lastly, I found this last night...gave me a little perspective as I am thikning about all that may be in store for this little girl.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."