Welcome to Holland

This is a poem I found through one of the mom's who's part of the S.B. Kids group I joined on BabyCenter.com. She sent it to me when I first joined the site and although it made me cry the first time I read it, I really felt like it described the feelings I had when we first found out that something was not right with our baby. Although now those feelings are already fading and I don't feel that overwhelming sadness or helplessness, it was a sweet and honest way to help others know a little about what it is like. I wanted to share it with you. :)

"Welcome to Holland"
By Emily Perl Kingsley, 1987. 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 some of that pain 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

M.F.E.O.

Does anyone remember the movie Sleepless in Seattle? It's a favorite with my family I know. :) Well, there's a part when Tom Hanks' son Jonah befriends a rather dramatic little girl and the two decide to write a romantic letter to Meg Ryan's character. To make a long story short they send it as if Tom Hanks has written it and the juvenile somewhat silly language makes for a pretty funny scene as Meg Ryan tries to figure it out. Well, there's a line in the letter that reads "let's find out of we are M.F.E.O - (made for each other)." The silly abbreviation and corny wording makes Meg Ryan roll her eyes, but it seems a perfect phrase to describe how I feel about our little baby. We are totally M.F.E.O. :)
We hit the 6 month mark and I already find myself getting impatient to meet him while at the same time enjoying every minute of having him roll and kick around inside me. And boy has he! He got the hiccups twice yesterday! It was a first for me and took a second for me to realize what was happening both times. So fun to think about. He's so active that I hope I don't worry when or if he finally settles down. We are beginning to buckle down and decorate his nursery (fun!) and will probably start the registering process soon.
These are fun times and hard times as we dote on the idea of our little boy while trying to push back the worry of the unknown that threatens to bring us down. However, most of the time we're happy, hopeful and postive so keep those encouraging prayers and thoughts coming so we can continue to walk by faith. :) Thank you for all your love.

A Little "Cousin" for our Baby

Baby Jane Darcy Weis was born this morning to my cousin Jenna and her husband Chris. She was 4 weeks early but a healthy 6lbs 6oz and 19 3/4 inches long! She seems precious and I can't wait to meet her! It probably won't be until this summer though until we introduce the two (since baby Jane lives in PA). So "Yay" for babies! Just wanted to share some happy news. Our little doodlebug is still kickin all the time. We're counting down the days until my next ultrasound. :)

Future Kickboxer

I had my 24week doctors appointment today. Just a normal check up but we heard his quick little heartbeat again. The doctor had to stay on her toes to keep up with the heartbeat because he was moving around so much. He kicked the little microphone (or whatever it's called) 3 times while we were listening. :) The doctor laughed and said he was "an active one." I knew that (he's always bumpin' around inside) but it was nice to hear. He's measuring right on and I go back in 4 weeks. Yay! 

To our family and friends, thanks again for all your love and support. We wouldn't be where we are without you.

Growing Strong!

We went back Feb. 4th for a check up with our perinatologist. He took this picture for us. Baby was measuring right on track at a healthy 1lb 3oz. :) He was moving around so much the ultrasound tech could hardly get a good picture. We were thrilled to hear that everything is looking very good so far. We keep praying everyday for our little miracle baby.

The Power of Prayer

We went to meet with a neuro surgeon on Jan. 19th to find out more about SB (spina bifida) and what we could expect. We sent this email out following the appointment. :)

We are happy to say that our doctors appointment with the neuro surgeon today went well. Dr. Hudgins was able to tell us more about how a "typical" case like ours would go regarding the surgery and recovery of our baby. He was willing to answer any questions we had but made it clear that much of the diagnosis would depend on how things go after the operation. At this time we know that the spina bifida is in a good place (the lower on the spine the better) and that any area of concern would likely be limited to the feet/ankles (weak areas that may take time to develop) and bladder (which is commonly affected by all forms of spina bifida). The doctor says that typically children with this case of spina bifida will walk and run (Praise God!) just maybe a little later than normal. For example, it may not 11months...but more like 18 months before he starts to walk) and possibly with some help from ankle braces at some point depending on what they see as he develops. David and I agree we can easily wait a few more months before our little boy starts running away from us. :) Most likely he will be in the hospital for about 2 weeks in recovery after he is born and the surgery is done. At this point it is also likely that a shunt will have to be put in to drain any fluid off the brain that will likely occur following the spinal surgery. After they release him to come home the doctor said that home life will likely be "just like having any other newborn." (So good to hear!) The doctor also seemed positive about the bladder control issues stating that either medication or sometimes surgery will help with any problems when the time comes. We are so thankful for the prayers and encouraging words that have been offered and that we know we will continue to receive. Even after the surgery, we will be meeting with doctors very frequently for the first year of his life and then at least once a year through his childhood. There are many other possible worries of course. Having a healthy baby is always a miracle -so many things have to go right even without the risks we are aware of. Prayers of patience until the baby's birth and surgery as well as an "uneventful" pregnancy in the months to follow are appreciated. We want to keep everything else normal and healthy for the next 4.5 months -- no more complications. :) Prayers of healing in the weeks and months to follow his birth are still greatly needed as well. Thank you so much for this great comfort -- the power of prayer. 

Fear and Faith

It was right before these 20 week pictures that David and I had some difficult news. Here is an email we send out to our church family and friends from that time. January 8, 2009.

"David and I are so grateful for the prayers that have been offered up for us and our baby yesterday and today. It has been a great comfort to us. We received very troubling and upsetting news at a doctor's appointment yesterday afternoon. My blood work from a routine appointment a few weeks ago showed cause for some concern. The blood test results were a possible sign of spina bifida (an opening in the baby's spine) so our doctor wanted us to see a specialist who would perform an ultrasound to make sure everything was okay. We had heard that this was often a misdiagnosis and therefore everything was probably fine. However, at the ultrasound yesterday the doctor was very concerned at what he saw. The ultrasound showed what looked like an opening at the top of the spine at the base of the brain. This location of spina bifida was very problematic and very rare. The doctor himself had never seen a case like this before and thought this to be very grim news for the baby. Based on this prognosis the doctor thought the baby would likely be severely handicapped or even unable to live outside the womb. He wanted us to see his colleague for a second opinion. Needless to say we were heartbroken and didn't know what to think or do. 

Today we went to see the recommended doctor for a second opinion. We were prepared to hear the same horrible news and were stunned when the ultrasound showed the neck/upper spine of the baby was fine and intact. The spina bifida is still present, but at a much lower point on the spine. In these cases the lower the opening the better. While the spina bifida still poses certain risks, (mostly to the lower extremities like the legs, feet, and bladder) it can and will be treated. We will be meeting with a neurosurgeon who will tell us about the surgery that will be done to fix the opening upon birth of the baby. During all this we wondered how this change of events could have happened. The doctors reasoned that the machine yesterday was not as accurate or that maybe the baby's position caused them to mistake the location of the opening. We feel God's hand in this new development and we will not cease to pray for the health and development of our baby as we continue to meet with the doctors.

We cannot begin to thank you all enough for the thoughts and prayers - our families have both felt an unexplainable peace and now a new hope for our future that we can only attribute to God's hand resting on us. We need your love and prayers more than ever now and ask specifically for you to pray:

* For the baby's health and continued development (especially that of the legs and bladder)

* That the opening will not widen or leak fluid to the brain (which is a common risk with spina bifida)

* That God will steady the minds and hands of the doctors throughout the pregnancy and surgery.

* That God will continue to give David and I the strength, peace and faith we need during the uncertainty and worry that lies ahead.