Dear Santa, you freak me out!

When I was younger I loved going to visit Santa, never once was I ever terrified of Santa. Santa and I were always friends because I knew that in the end it would always work out in my favor to be nice to the guy. My sweet Oliver, however, is terrified of Santa.

For about the last 4 or 5 months Oliver has really started to be a little weary of people he doesn't know so Nathan and I knew going into this year's Santa visit it was probably not going to end well. So my very smart husband thought that bringing a few dum-dum suckers along might make Santa a little less scary for O. We had to wait in line for about 15 minutes and of course by wait I mean I waited in line while Oliver and Nathan threw about $6.00 worth of pennies in the mall fountain. But as we got closer and Oliver was saying "ho ho ho" and talking about Santa and it appeared as though this might not end as badly as we had thought.

Finally it was our turn, Nathan went a few steps a head of us and slipped Santa the dum-dums telling him "these might make it better for all involved" and Santa gave his signature jolly belly laugh. Please keep in mind Oliver had yet to lay eyes on Santa, so he was almost skipping toward Santa's area because he just knew that since we had waited in line this long for something it had to be a good thing. I wish now that I had gotten this on video, but as we rounded the corner he got one look at Santa and turned to me and said "up mommy, up". I tried to encourage him to meet Santa on his own but the poor boy wouldn't let go of my leg long enough to even breathe let alone actually meet Santa. So I did what any good mother does I picked Oliver up and placed him right dead smack in the middle of all his fears, Santa's lap. Then I did the unspeakable, I walked away him.

Nathan and I weren't sure who should have received more of our sympathies over this experience, Oliver or Santa. So after just a few seconds I went over and picked Oliver up and Santa gave O his dum-dum and through his tears Oliver was able to tell him thank you for the sucker and then we walked out of the mall like Santa never even happened. Oh but Santa 2012 did and we have the evidence and it will forever be a part of our Christmas decorations because really it's just a fantastic picture.

O! You better watch out!
You better not cry
Better not pout
I'm telling you why
Santa Claus is coming to town

 

-Erin-

 

 

He's Two.

Two years ago our lives changed in ways, at the time, we never could have imagined. Oliver Davis was born at 7:27pm. He had red hair, chubby cheeks and the ability to melt my heart in an instant. I can remember almost every single detail of the day O was born as if it were last week...

For weeks I had been getting the "make sure your bag is packed because you probably won't make it to next week's check up" speech from my OB. That speech is agonizing. I remember walking around thinking I was like a ticking time bomb. I remember Nathan and I not wanting to go anywhere unless it was absolutely necessary for fear my water might break in the middle of Kroger or something. I mean could you imagine, "Clean up on aisle 12." Oh my word, what a nightmare that would be. But as we were approaching the 40 week mark I felt nothing more happening than growing frustration because I was so over being pregnant.

December 16, 2010 was a Thursday and it began like most any other day, it was Oliver's due date and Nathan was going into work late because we had, what we hoped to be, our last OB appointment before meeting the child we had already grown to love so much but to which we had never formally been introduced. We got to the doctor's office around 9:30 am and my doctor assured us that it was almost over. Looking back she had such sympathy in her voice probably because I was HUGE. She said if Oliver didn't come on his own we were to report to the hospital the following Monday night to start the labor process by induction, but she also said it wasn't likely that inducing me was going to work and that Tuesday morning she would make the decision to deliver him via c-section. The ultrasound technicians had been watching O's weight closely and were estimating him to be around 9 lbs, but always with the caveat that they could be off by a pound in either direction, meaning there was a possibility that I could have been carring a 10 pound baby.  I mean, some people buy Thanksgiving turkeys that weigh less than that. The doctor made it clear to Nathan and I that it was not likely that such a large baby was going to come out of me without surgical intervention - apparently I am just too petite and not built for it.

So we had a plan and as we were leaving my doctor realized she needed to send me to do the 40 week stress test.  We were ushered down the hallway and into a room with a big lazy boy and I was instructed to push a button every time O moved, once I was finished my doctor came in and said she didn't like what she saw and asked me if I had eaten anything. I wanted to reply sarcastically, "ummm there is no room left in my body for food, so no I haven't eaten", but I was polite. She sent me out to eat breakfast thinking it would change the results of the test. So after eating something we went back and took the test over again and then they told us we could leave. We were almost to the parking garage when we heard my doctor calling my name and running after us. I looked at Nathan and said, "this can't be good". She told us that the baby was "stressed" and that he would need to be delivered by c-section today." Ya'll, she almost had to pick me up off the floor. I just kept repeating the word "today" over and over again in my head. Oliver had offically outstayed his welcome and he had run out of room (her words not mine). His heart was decelerating because each time he moved he was compressing his umbilical cord. After that brief, but life changing, conversation we were told to go straight to triage where we had to sit and wait for 7 hours all because I had just eaten. They kept close watch on Oliver's heart and were ready to take O if it got worse but wanted to let the food settle so that I wouldn't have any negative reactions to the anesthesia.

Finally the time had come and I was taken to the OR, which has enough material for it's own post, but the thing I remember most vividly is watching a nurse in the corner counting all the medical instruments, while Christmas music was playing in the background.  From that moment on I just prayed my way through every single step. I didn't even realize they started when they were telling me that it was time to "push" and by push they meant one doctor kneeling on me pushing on my stomach. And then I heard him.  It was the sweetest sound I have ever heard. Upon hearing the sound of O's first cry I just remember saying to the Lord "we did it, we actually did it". Nathan went immediately to Oliver's side and I could hear Nathan saying "he has red hair, he has red hair!" Seeing Oliver Davis Hinson for the first time, I believe, is the closest I will ever get this side of heaven to seeing the face of Jesus. It was an amazing day.

And somehow just like that he is 2. He is 2 and can actually carry on a conversation that I can understand (most of the time), he can tell me what he wants for dinner, which most nights is either pizza or noodles, he can spot a bulldozer from a mile away, and best of all he can give me a kiss every night and tell me he loves me. Everyday that Nathan and I have had with Oliver in our lives has been a day full of unspeakable joy. Becoming a mother is a beautiful, God ordained task and one that has seen, and I am sure will continue to see, its ups and downs but I would trade it for nothing. 

So, today he turned 2 and he is now peacefully asleep in his bed with a firetruck, an elephant, a book, a bulldozer and a puppy all because that's how 2-year-olds roll.



December 16, 2010                                       December 16, 2011                              December 16, 2012

"Behold, children are a heritage from the Lord, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one's youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate." Psalm 127:3-5 

-Erin-

Catching up...

The dust has now settled from our initial trip to Cincinnati and we have gone back to living a semi-normal life. Nathan and I have been reading all the materials we received while in Cincinnati and gleaning new information daily, but I know I have emotionally reached a place of great peace. Even though I read a little more every day about the clinical aspect of Spina Bifida my soul is calm. I know it’s only because the Lord has provided it. "The LORD gives strength to his people; the LORD blesses his people with peace." Psalm 29:11 Most days we’re so busy with all that life presents us, I forget all about Spina Bifida. I don't even think about it much anymore when Henry moves, which is a great blessing as that was something I really struggled with after receiving the news. My heart would ache for him and for me but now he moves and I am only reminded of the child that God has given us to love. This is a reminder I receive often because he is constantly moving, but more on that in a minute.
   
As I said emotionally I am feeling pretty great but physically I am exhausted. It's funny when I was pregnant with Oliver my second trimester was fantastic, with Henry I get up, take a shower and then feel like I should lay back down for a nap. When I was pregnant with O, I remember he was a calm baby, even after he was born he was very easy going. I can remember I used to pray many times throughout the day that he would just move so I knew he was ok. More times than not Oliver's movement was in the form of hiccups. The poor boy would get them and they would stay for hours. With Henry I find myself asking the Lord for a break. The boy is moving all the time!!! There are moments when I am in serious need of a dramamine because I feel as though I am rolling on the high seas. So it makes me wonder what this means for Henry's personality and what he will be like when he gets here? Oliver to this day is still an easy going child, and for the most part, a calm child. I mean as calm as it gets being an almost 2-year-old, which I guess isn’t very calm at all. (ha ha ha) I know that the day Henry is born this  journey is really just beginning for us, but I find that as I am waiting for all of this to really begin, I stand with great strength and with much more anticipation of who Henry will be, rather than waiting in worry about who he may not be because of his diagnosis.

Good News

Last Wednesday we had an ultrasound to check up on Mr. Henry and his fetal movement was off the charts. His legs and arms were moving with great ease and with even greater frequency! The ultrasound tech just kept laughing at him. He would flip and flop and roll and kick and I assured her this was my every day with little Henry. Best news from the ultrasound is that Henry’s head is growing!!!!! He is now only measuring about a week behind in gestational age for his head size, so it’s still small but hey it’s growing! This is a huge answer to prayer, but something that still needs to be prayed over! I know without a doubt that the Lord hears the prayers of the masses that have been going out for Henry and our family and He is answering them as He sees fit. With each new answer God reveals Himself to me in a way I didn’t think possible.  More good news: the ventricles in Henry’s brain also went down by 3 millimeters. At the beginning of the month they  measured 11 millimeters and they now measure at 8 millimeters which  is well within normal fetal range. The size of the ventricles may fluctuate but this was a very good sign on Wednesday. 

I have my first doctor’s appointment in Cincinnati on December 18 and they will increase in frequency as Henry (and I) grows in size. For now our pregnancy experience with Henry is like any other baby with a few more doctors’ visits, but as we near that 30 week mark I will begin going to the doctor twice a week for testing and monitoring. Thankfully we have found a way that my doctors here can co-manage the case with doctors in Cincinnati so that I am not driving up and down I-71 twice a week until it is absolutely necessary!

I will leave you with this thought for the day...It’s hard to believe that we only have about 14 weeks left before baby Henry arrives, now if only we could get Big Brother to know what this means... Nathan and I have been trying to explain to Oliver for months who Henry is- but he is 23 months old – how much is he really going to understand? We have found some fantastic books like this one, this one and this one, however our sweet sweet almost 2-year-old now believes that there is something called a “Henry” growing in, on, or near his belly and he thinks that whatever is happening to mommy’s belly has something to do with a bulldozer. Let’s all hope baby Henry looks nothing or weighs nothing like a bulldozer! :)

Sons are a heritage from the LORD, children a reward from him. Psalms 127:3

Here are a few pictures from our Thanksgiving, hope you all had a happy and blessed Thanksgiving!


Information Overload...

This past Thursday and Friday (Nov. 8 & 9) we made the trip up to Cincinnati Children's Hospital (CCMH)  for our 2 day consult about Henry. I knew going into the two day evaluation that us going to Cincinnati was a good decision; I now know it is and will be the best decision we have made thus far for Henry. Hang on to your hat this is going to be a long post...

On Thursday, I had an MRI that lasted for an hour and a half, but might as well been forever. I have never been a claustrophobic person but after that it's possible that anyone could become claustrophobic. For fetal imaging they wrap you in these coil things making the space even smaller. I literally felt like when it was over if you turned out the lights I would have glowed, but it gave the doctors the information that they needed, so I did it with a smile on my face. From the MRI I went straight into a 2 hour and 15 minute ultrasound. Henry is a feisty little dude. He wanted no part of their poking and prodding which I find hilarious because he is in for a lot of poking and prodding. There were several moments of that ultrasound that lifted my spirits - at one point we could actually see Henry sticking his tongue out at the ultrasound tech. He waved a lot and he has really long fingers. At this point his feet show no sign of clubbing and his legs have movement, which we have been told will change but more on that in a minute. Please keep in mind that at this point in the day I had not had anything to eat or drink since about 8:30 am so when my mom, Nathan and I went up to the fetal care center for our last meeting I was really hungry. I was surprised when they brought me a sack lunch. It may seem silly but I was almost moved to tears over a sack lunch. I didn't ask for it nor did I even know it was an option but they knew I would need it. It was the simplest way that they could show me that they cared and that they were prepared for us. We then met with a nurse from the Fetal Care Center and she was fantastic in explaining things further and helping us understand what awaited us on Friday.

On Friday my first appointment was with a Cardiologist, who did an echocardiogram on Henry's heart and thankfully all looked great! In the early afternoon my Mom, Nathan and I met with the Developmental Pediatrician at the Spina Bifida Clinic. She is exactly what one would imagine a German grandmother to be like, I half expected her to bring us German cookies and bust out in a traditional German folk song. I knew after meeting her she would be Henry's doctor, for crying out loud she wrote a book about Spina Bifida why would you not chose her to be your child's doctor if given the option?! At this point all the scans had been read and sent to the doctors so she was able to tell us that Henry's lesion is at L3/L4, which is something we had been waiting to hear for weeks. She then went on to explain what she has seen in other L3/L4 kiddos: it is likely that when he is young, Henry will be able to walk with the assistance of bracing and other supports. She did say, however, that most children with this type of lesion do chose a wheelchair as they get older because it requires such energy for them to walk. Keep in mind that, at this point, this is all speculation and will be determined only when Henry is here and is hitting these milestones like any other child his age would. With the location of Henry's lesion he will most likely have feeling in his hips, thighs and his knees but will have muscle weakness/paralysis from the knees down. She also explained that it is likely Henry will have to be catheterized his entire life because the muscles that would signal his bladder to function will also have paralysis and will most likely never function like mine or yours does. The same goes for his bowels, but we won't deal with that aspect of it until he is around 2 or so.  She gave us lots of information, including her book, but she kept saying one thing over and over that Henry is going to be a baby just like any other baby. His needs are not going to be that much different than any other newborn.  This gave me a great peace.

From there we met with a Social Worker and a Genetics Counselor from the Fetal Care Center and they offered us more information and explained in a little more detail what it would be like should we chose to deliver Henry in Ohio. Then at 4:15 pm they came to get us for the TEAM meeting. I felt like when I walked in the room I needed to introduce myself with a few letters after my name just to fit in. ("Hi my name is Erin Hinson, ABC, LMNOP, XYZ")  But they quickly made us feel comfortable; there was a maternal doctor, neurosurgeon, surgical director for the fetal care center, neonatologist, nurse coordinator for Good Sam and a few others. They began going over the scans with us. Seeing an MRI image is pretty cool anyway, but seeing said image of a fetus is amazing. I wish I could post a picture here but in one of the images Henry's face looked much like a fish you'd see in Finding Nemo 2, the entire room laughed, which made me smile. The most shocking thing the scans reveled to us is that, just like his big brother, Henry has a duplicated right kidney. Which means between our 2 boys we have 6 kidneys. That's crazy! They explained to us what Henry's surgery/surgeries would be like and that he would have to stay in the NICU for about 3 weeks. I have to tell you the entire time every single one of them called Henry by name as if they were all old friends. They know much more about my son than I do and it gave me comfort that they called him by his name - he's not just some Spina Bifida case, he is Henry Jude Hinson. They were very matter of fact with us, but along with that came some very scary moments. They have to lay out all the risks of what may be, what could happen, worst case scenario  etc., although they would always quickly follow the bad stuff with the statement that this isn't the case for all Spina Bifida babies but there can be some outliers. The neurologist that was in the room said something that made my mommy heart leap for joy and will be one of the things that will carry me through this journey, she told us that when Henry is born he will have function and it is their desire to keep him always functioning at that level or better. She then said "decline is not an acceptable option for any of our patients". It took my breath away, because up until that moment I had done a good job of keeping it together but I lost it when she said those words to us because as Henry's mom I am ready to fight for him in a way I didn't even know possible and it makes my heart full knowing that Henry will now have doctors who will fight for him just as much as I will!

Well I guess that's the Reader's Digest version of our trip. I am sure I left something out but that's what I can remember for now, driving home last night I had a feeling similar to the drive home in college after finals week... sheer brain drain. They gave us tons of material to read and review so i am sure there will be more...

It wasn't even a conversation that Nathan and I really needed to have, but at some point during this 2 day experience we decided that we would delivery Henry in Cincinnati and his care would be provided by the amazing people we met over the course of the trip. This is what we know: I will be calling my OBGYN on Monday to officially transfer my care to the OBGYN group up in Cincinnati and they will deliver Henry at Good Sam Hospital at 39 weeks. A few hours after delivery Henry will be taken to CCMH, by ambulance, and he will set up residence in their NICU. At some point in his first 24 hours they will take him into surgery to repair the lesion, a few days later they may (most likely will) take him back into surgery to install the shunting system in his brain. We're not sure yet when I will have to relocate to Cincinnati - a lot of that depends on the rest of my pregnancy  But if Henry is anything like Oliver, he will be content to stay inside for as long as possible. They could have me relocate as early as 37 weeks or I could come up a few days before the scheduled c-section.

Prayer Requests

Many have asked us what to pray for as of right now here is the list:

Healing: Obviously I believe in a God who is in the business of miracles. I pray for the Lord to grant Henry and our family a giant miracle everyday. I believe if He chooses to the Lord could completely heal Henry's body, but I also know that my kind of miracle and God's kind of miracle may be different. The very fact that Henry's heart is beating and that we have found  been lead to a wonderful team to care for him at CCMH is miracle enough for me.

Pregnancy: Pray that from this point forward my pregnancy will be uneventful. No more surprises, no early labor. Nothing. Nada. Zilch.

Henry's Head: Right now Henry has a head circumference that is measuring about 2 weeks behind the rest of his body. This isn't uncommon for babies with Spina Bifida but we, the doctors, need to see it grow. This was probably the scariest part of the team meeting. Talking about what would happen if Henry's head and brain aren't growing, but again they said it is a common find and not something to worry about just yet. But come on I will still worry about it so we need to pray that away. Pray it grows; I want to deliver a baby boy that has a HUGE head! :)

Finances: It's not going to be cheap for me to drive up and down the highway every couple of weeks for OB appointments but it is what we need to do for Henry so we will do it. I will also be away from home for a possible 5 weeks before and after Henry is here, which means Nathan and Oliver will be driving up and down the highway. While we will be able to stay at the Ronald McDonald House, it's still going to be expensive for me to leave work a couple of weeks early and take a longer than average maternity leave. We also have no idea if I will go back to work full time or part time or not at all. A lot depends on Henry and the care he will need. Again all things we won't know until Henry is here. We are praying that Nathan would find a job that would allow us the potential to be a one income family but also have great benefits - because we're going to need those benefits!

Oliver: There are going to be a lot of changes for him in the days leading up to and after Henry's birth. It's likely because Henry will be born during flu season that Oliver won't get to meet Henry until we bring him home. Oliver's also going to be without me on a regular basis if I need to relocate early and during Henry's stay in the NICU. Oliver is a fantastic little boy, he adjusts well, but this is different than anything he has experienced in his 2 years of life. As his mommy I want to fight for him too and I know it's going to be hard on him and my prayer is that God would allow me to give myself some grace and not feel guilty for leaving him and that the Lord would give Oliver a peace during this time.

I know that just as He has promised God is going before us and preparing the way for us. I believe that this trip has made all of this real in a way it wasn't a few days ago. We have some realistic expectations now, we understand a little better what we're dealing with but we have also seen God beautifully orchestrating the entire thing. I found this verse a few days ago and I believe it will be one that now stays with our family forever. Just as you cannot understand the path of the wind or the mystery of a tiny baby growing in its mother’s womb, so you cannot understand the activity of God, who does all things. Ecclesiastes 11:5 (NLT) As many of you know I'm a planner. There isn't much I can plan for right now, but this verse and many others have given me a great peace. I know that at this very minute God is handling the planning. He is doing great things to prepare us, our families and our friends for Henry. I know that one day I will be able look back with the realization that God took care of everything. 

-Erin-

Sometimes you just gotta put on the monkey costume...

This is Oliver's first real Halloween. He was a monkey. A really, really cute monkey. However, the very first time I tried putting the monkey costume on him it took me an hour. He was mad and wanted no part of becoming a monkey. I was mad and was determined not to be out done by my 22-month-old. He kept saying screaming "all done mommy, all done mommy!" He put up a good fight but in the end I did what every mother does at some point, I bribed him. I promised him a horse, candy, a bounce house, a pumpkin, more candy - I was desperate.  But even after getting him in the costume he still wasn't happy about it. Because, quite frankly, the kid is smart, he knew there was a good possibility that mommy was pulling his leg in one of her ridiculous stunts, and that there might not be a horse or candy or a bounce house.

Exhibit A:

This picture makes me laugh every single time I see it.

Ultimately, I was very thankful that all these things were actually at the fall festival and Oliver did realize very quickly that the monkey costume meant that people would give you candy. Dum-Dum Suckers are his biggest weakness.  As the weeks went on and we would tell him it was "monkey time" he would run to his room and wait patiently to put that monkey costume on because he knew what was coming. He didn't know how long it was going to take for us to get to the festival, trunk or treat, the zoo, etc... but he knew that when we got there there was going to be good stuff awaiting him, quite possibly dum-dums would be involved.

Our Very Happy Monkey

Today I felt much like Oliver the first time he saw me coming towards him with that monkey costume. I wanted no part of today. I didn't sleep very well last night, thanks in part to a trick-or-treater that rang our doorbell at 8:45pm and woke Oliver up. I have also spent 7 days talking and thinking about Spina Bifida. I have spent 7 days with people looking at me with sorrow in their eyes, and questions on their minds. Today I didn't want to talk about Spina Bifida.   Today I was tired both physically and emotionally, I was cranky and not very talkative. I think, for the most part, I was content to stay that way. I wanted to dwell and wallow, which is normally so not like me. And then I was reminded of a saying my mom just LOVES to throw out there when things aren't going our way: "no matter what, every day we must choose joy".  I was not doing a very good job of being joyful today, let alone making any attempt to actually try to choose joy.

So I did the only thing I know how to do, I prayed and went looking for comfort in God's word. Please keep in mind it took me much of the day to even realize that my attitude needed a God sized intervention or it was going to be a very long night before I could finally be one with my pillow again. So I began to read and then like a spiritual 2X4 upside the head the Lord reminds me: "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18 Ummm, yeah humble pie for one, please.

Spina Bifida will always have a place in our lives, I don't think there is ever going to be an occasion that I can just run and hide from it. I also know that Satan would just love to have me stay in the pit, but I know better than that. Spina Bifida will always be a part of us now because as Henry's parents we chose to love him no matter what the day we found out we were expecting. Whatever may come, he is ours and there is joy in that.

So it's been 7 days and we still have very little answers and there are a lot of questions. But just like Oliver didn't know how long it was going to take for us to get him to the candy, he knew that as long as he had the monkey costume on candy was a-comin', I may never understand this side of heaven why Henry has Spina Bifida or why we were chosen as his parents, but if we remain faithful and choose to see the joy in this journey we will find joy and there will be many blessings along the way.

-Erin-

Handling it...

For the longest time I believed that the phrase "God doesn't give us more than we can handle" was biblical. I have had to handle a lot in the last six months, so I went out in search of this scripture because I wanted, no, I needed to memorize this truth. Because I was starting to realize that maybe my definition of handle and God's definition of handle were very very different.

If in fact God doesn't give us more than we can handle why then does He require every single one of us to turn 2? I'll let that sink in for a minute. That resounding amen you just heard are all my mommy friends out there who have ever had to put shoes on the same kid 5 times during a 6 minute car ride, or found a potato in the toilet, or went to grab a tissue only to discover that every single one of them had been shredded into a million pieces, but placed back in the box. These are the things on any given day I cannot handle.  

In this crusade for scripture my end game was to be sure that at some point God was going to realize He had given me too much to handle. To my surprise there is no such verse. Can we all just take a moment to say YIKES! So to understand this further I did what anyone would do, I went straight to the google box. Surly someone else has an explanation for this. In my search I came across this blog and it explains that this phrase is believed to come from 1 Corinthians 10:13.  "No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it."

I love what the author of this post writes next: "This verse is talking about temptation to sin. I would contend that it's not talking about the unbearable sadness of losing loved ones. It's not addressing the experience of physical pain so intense you think you're losing your mind.  It's not about rejection so painful you can hardly breathe. We may be tempted during these experiences, and yet, they are not temptations in themselves. They're just hard, horrible things that happen to us when we live in a fallen world...

...I believe God allows things to happen to us that we can't handle all the time. He lets us fall, slip, be knocked into situations that Satan and our fallen world provide, not because He's a sadist who wants us to fail. No, He lets us come up against huge mountains we can't climb because He knows Who can handle them. Every time we dangle over a precipice of impossibility, we have a chance to let ourselves fall--into the arms of the Healer, Jesus Christ. I don't need some saccharine promise about having enough strength in myself to handle whatever is thrown at me. When I have no more strength left, what I need is to be reminded is to look to Jesus, my Savior who can not only handle anything, but He can make it glorious." To read the rest of her post click here, it's good stuff you won't regret it. 

It's not about what we can handle. It's about who we turn to when there are things that need handling. Things happen, life happens, Spina Bifida happens, potatoes in the toilet happen, but God can handle it.

The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged. - Deuteronomy 31:8


-Erin-

Learning to love the gray...

I am person who has always lived in terms of black and white...I hate the gray. Something either is or it isn't. Henry's diagnosis of Spina Bifida has planted me firmly in the gray. I'm carrying a baby whose future is unknown. Doctors could repair Henry's lesion and he could very well be like every other kid or he may never be able to walk, have severe bladder and bowel complications, seizures, and the list could continue, but it's all gray, it's all unknown and we may not know these things until well into Henry's life on this earth.

As I have been researching online and reading the stories of other families they have given me a hope that I didn't have a couple of days ago, but most of their journeys began with the gray, unknown diagnosis that is Spina Bifida. There have been some sad, dark moments over the last few days, and I am not naive enough to think there won't be more, but for now God has called me and my family to stand in the gray so we will choose to find the blessing in that and in return He will give us comfort and care when we need it.

Fall is my absolute favorite time of year and Oliver is as in love with pumpkins as you would expect any 22-month-old to be. His favorite book right now is The Pumpkin Patch Parable by Liz Curtis Higgs, who is one of my all time favorite Bible teachers. Oliver has so much fun pointing out the the farmer, the barns and all the vegetables, so really I don't mind that we read it over and over and over because it brings him such joy. Tonight we were reading it for the third time and I noticed on the bottom of one of the pages the words from Isaiah 66:2. Which reads "'My hand made all things. All things are here because I made them,' says the Lord." Reading these words brought tears of joy to my eyes. Of course Oliver looked at me as if I was a crazy person, but what's new there?

The Lord met me tonight in the form of a sweet children's book about pumpkins. I read those words from scripture over and over. "My hand made all things..." not just some things, He made ALL things. The Lord made Henry; and just like that God gave me the exact comfort I needed at the exact right time. I believe He will continue to meet me where and when I need. So for now, with His help, I am learning to love the gray.

-Erin-

A journey that's just beginning...

Yesterday, October 25, 2012, we found out that our unborn child, Henry Jude, has Spina Bifida. I am certain I will never forget October 25, 2012, years from now I will probably still be able to tell you what I was wearing . It's amazing the things we remember from such life altering days. Words have the power to inspire, to bring joy, to bring pain, to bring laughter but to hear my doctor say the words "Spina Bifida" left me feeling numb in a way I had not expected.

We found out we were pregnant with Henry at the beginning of July and we were over joyed. As anyone would when you see that little plus sign on the stick you're immediately filled with hopes and dreams for your child, along with extreme exhaustion and all that other fun first trimester stuff. And then you hear your child’s heartbeat for the first time and your heart is full of pride; you never expect your doctor to come to you 9 weeks later and give you a diagnosis that you weren't expecting. We knew at about 18 weeks there was something wrong but Henry was too small for them to really know what we were dealing with. So we waited two weeks, had another ultrasound and Spina Bifida was confirmed.

So what is Spina Bifida?

As the days go on we will probably post an entire blog about what spina Bifida is exactly, but for today here is the short version. The information below was taken from the Mayo Clinic website.

"Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them.
Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone.

Spina bifida occurs in various forms of severity. When treatment for spina bifida is necessary, it's done through surgery, although such treatment doesn't always completely resolve the problem."


I spent much of the day yesterday on phone with doctors and nurses from Vandy Children's Hospital as well as Cincinnati Children's Hospital to see if Henry and I qualify for fetal surgery. Unfortunately one of the criteria for the fetal surgery is that the mother have a BMI of 35 or less. My BMI is 36. There was a big part of me yesterday that wanted to dwell on the fact that my weight was going to prevent Henry from having the prenatal surgery, but one of the nurses I spoke to kept making me repeat that Henry's condition was not my fault. She also said that I should take this as a sign that Henry and I were not supposed to undergo this type of procedure to fix his Spina Bifida. She kept saying over and over that the standard of care for babies born with Spina Bifida was repair after birth. She was a complete stranger and yet she offered me more comfort than I ever expected. her voice was calm and confident as she reassured me it was ok to be sad but that we were going to be ok.   

I will be heading to Cincinnati Children's Fetal Care Center next week to go through the two day surgery qualification program. Even knowing that we will not qualify for surgery, it was recommended we go because we will leave knowing more than what we know now. They will run a number of tests on Henry like a fetal MRI and an amniocentesis. That last one scares terrifies me. Once we have all the results from the tests we will meet with a neurosurgeon here in Louisville. The same surgeon that untethered Oliver's (our first born) spinal cord, so we know him and we are familiar with him and he is one of the best neurosurgeons in the country, and was recommend by both the hospitals I spoke with today. Henry will have surgery to repair the lesion within the first 24 hours after his birth. Which as a mom is the absolute last thing you want for your newborn, but it's what Henry needs. Nathan and I now know a lot about Spina Bifida but at the same time we know very little about Henry's case and what this will mean for his quality of life. In the coming days and weeks as we meet with doctors and specialists I have no doubt that more and more information will be given to us. They will run through scenarios of what Henry's life may be or may not be like. It's a journey with a lot of unknowns and those who know me well know that unknowns are not something I do well.

Right now it's hard for me to separate Henry from the Spina Bifida and that makes me really sad, because I know that Henry is more than Spina Bifida. So I find that every time I feel him wiggle I go straight to "he has Spina Bifida". Then I try to remind myself of the little things that I already know about Henry; like the fact that he loves chocolate milk (because I can't get enough of the stuff!) and he likes music. I know that Spina Bifida will always be a part of Henry's life but it will not always define who Henry is.

So why a blog?

Our journey is just beginning, and no doubt, it's going to be long, it's going to be overwhelming, it's going to be scary, sometimes painful and at times I imagine it will be heartbreaking. Nathan and I have family and friends that are both near and far and we hope this will be a place to stay up to date on our family, on Henry and his big brother, Oliver. This journey is one that will need to be covered by the prayers of many and some days I may write just to get it off my chest.

"Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end. "- Ecclesiastes 3:11.

Every day of this journey I will be reminded that God has chosen Nathan and I to be Henry's parents and so we will fight for him, we will love him, we will pray over him and we will believe that God has an amazing plan and purpose for this special child. This blog will serve as a reminder to us and to everyone that our God is faithful. I have no doubt that, in time, God will begin to reveal His purpose for the Hinson family. The verse above gives me great comfort because I don't have to know the scope of God's plan from beginning to end, I just have to have faith that He is the one with the plan.

- Erin-