The Hilman's

Some of God's Greatest Gifts...

2009-08-28T18:52:00.004-06:00

Today is proof that there is power in prayer. It's a sign that God is here and God is good. Today your prayers have been actualized in a 2 year old who let go of the safety of his parent's hands and chose to walk. Steps that we were told he wouldn't take, steps that we've prayed for, steps that you've prayed for.

How does a mother say enough "thank you" for a gift like your prayers? I can't. But my heart is overwhelmed with the goodness that God has given us. Thank you for your faith that God would answer us.

Daily we are blessed to watch the workings of God in little Jake's life. Knowing that a child surrounded with so much prayer is destined for a part in God's work. Seeing that already Jake is touching lives with his God given abilities and sparkling personality.

I'm continually humbled by my little family, now of 4. Ethan is growing fast, already 11lbs! He's quite vocal in all his actions, and we love every sound!

I realize how small my faith actually is as I watch Jake explore our world from a new angle. While I claim a strong faith, part of we wondered if we'd ever get to today. So many blessing God has already given us with Jake's physically health and normal cognitive ability. And yet he continue to prove himself gracious again. Wow, it just blows me away.

Please be renewed that what ever your prayers they are heard and answered, in His time.

God's Blessings and Peace to you.

Melody

2009-03-12T21:34:00.005-06:00

So I know that it been half of forever. But this time I have a really good excuse. I am expecting our second little one in August (the 12th). And unlike with Jake, this time I was really sick for the first three months. That would lead me to believe it's a girl, but today at my ultrasound it was defiantly showing "boy" load and proud. So I beg your forgiveness for the lacking in my blogging.

It's been an exciting, but nerve racking 18 weeks. To be honest I think I had prepared for this child to also have spina bifida. For us parents that only know what it's like to have a child with a disability we almost have to accept the worst case scenario when we try for another child. We're a higher risk for a second baby with the disorder, and unless we're willing to accept that outcome you can't rightfully make the choice to try again.

That said, we've had a detailed ultrasound at 16 weeks, and what development they could see (most of the spine) everything looks "normal". Also my blood work has all returned with no abnormalities. That said it's hard to know how to act with an uncomplicated pregnancy. I am only used to the stress and emotional ups/downs with complications. My mom said I didn't seem excited to find out that everything looks good to this point. The only way I can explain it is "I don't know what to do with such an easy pregnancy. I feel like I should be "doing" something. Like I was prepared for another emotional rollercoaster and now I'm just suppose to go home and enjoy being pregnant" it's hard to get my head around.

Life is crazy as always. But we're working on some changes that will hopefully bring some sanity to the speed we live at. I have yet to return to the hospital, but am working part-time with my photography and loving it. I am missing the nursing, especially as all my girlfriends start returning to the hospital from their maternity leaves this month.

We're so thankful for Jake everyday. Nothing can explain how much we love him. It's impossible to imagine loving another child as much after all we've been though with him. I know we will, but it will be so different. But maybe that's exactly what we need.

Jake is working on his walking. It's the only thing keep him from being "normal" at this time. The last few months have been big steps for him though, he will walk with your hands (2 hands) most anywhere. I can see that he's starting to understand that walking will give him the chance to get places he hasn't been able otherwise. Keep praying for him in this area.

We will be going on a family vacation in April for 2 weeks. We really need it, both personally and more so on a family level. I pray it will be a time to reconnect as a couple and family. Any to just enjoy Gods glory.

Thanks again for all those that have faithfully followed our journies. We are looking forward to the next chapter of God's plan for us.

Mel

To my faithful readers...

2008-10-21T14:24:00.011-06:00

Okay, so I've been worse than horrible about keeping up with the writing thing. Life seems to have gotten away on us. The funny part is that I found time today while I'm watching and extra child. Somehow I managed to get Jake and Owen (the other little guy) down for naps at the same time.

So to catch everyone up to speed on our lives. The summer flew by. We made a few trips out to BC to see friends in Cawston (Keremoes) where we purchased the house that Kev grew up in. We're not totally sure what our plans for the house are but right now we've rented it to a family. They have done lots to start on the fixing up process, but there is plenty left to go.Also Jake and I spent lots of time with my family at the Tarchuk cabin on the Shushwap. Kev joined us for a few weekends in between...
It was so nice to be able to play outside all day long. Jake loves being outside. He got his first taste of lake swimming and gardening!

We made a weekend trip north of Fort Mac by plane to Fort Chip on lake Athabasca. It was a refreshing weekend of friends (Neil and Amanda Hilman, and Janelle Hilman), fishing, and NO CELL SERVICE.

We also were able to make it to Lloydminister for Kev's grandparents 60th anaversary party. It was so nice to spend time with them, and for Jake to get to be around that part of out family. You don't realize how fast the time goes.

We're working on building our new home on a acerage outside of Mac still. Things are coming along, but it's slow going. We're hoping to be in for Chirstmas... keep your fingers crossed.Thanksgiving was a fun time for us. We took my family and intruded on friends of Kev's. They were gracious and we are thankful for their hospitality. I got the chance to take my mom and dad to Headly to the Mascot Mines up on the mountain for a private tour by a friend of ours. It is so cool, everyone should stop there if they're going past.

2008-09-07T21:04:00.002-06:00

I know I haven't given people anything to read, I'll try to this week, but hopefully this will tie you over..... haha he's getting so BIG!

Mel

A few more trials...

2008-07-10T01:12:00.001-06:00

So i haven't written anything since May long about our journeys. Most of the reason lies in that we've been going through and a completely crazy busy 8 weeks or so. But Jakeys birthday is around the corner and I'm praying it's going to bring some good changes...

After a peaceful and fairly uneventful (well "medically" speaking) 8 months Jake needed his first shunt revision. Maybe I wrote that I can't remember.

Three trips to emergency rooms, one UTI (bladder infection), two medi-vac flights to Edmonton, two bottles of codeine syrup, eight trips to Edmonton, one course of antibiotics, a thousand phone calls to physicians, endless sleepless nights, and TWO more shunt revisions bring us up to date.

I'm laying in the parent bed in Jakes hospital room right now, listening to the famillar noise of the hospital. He just had that last shunt surgery tonight and already is doing great. No matter how much I can complain about the last couple of months Kev and I are so thankful for all our many blessings. Just walking the floor of our unit reinforces that.

So after hearing all the bad stuff be uplifted with some of the great God things happening in our lives....

Jake is perfectly deveopmentally on track. That spark in his eye looks innocent enough, but its backed with a quick brain and constantly inquisitive mind. Kev and I are blessed with eachother and a strong marriage centred on Christ. So many friend and family constantly keeping us in they're prayers. Owning our business and financially being able to take the time to have both Kev and I at Jakes bedside. I've been able to not have to return to work until the fall. So as you see we're really doing well.

A quick note to close.

I was so touched by the beautiful words of a friend that i need to share the jist of it with you all.

She met Jake for the first time a few weeks ago, after hearing everything and keeping up-to-date over the last year. It was late and Jakey in his beautiful and gentle nature reached out to her and just touched her face. I didn't pay much attention to the whole situation until a few days later when she brought up the experience in conversation.
She said something along these lines "never have I met some one that glows with the radience of Christ like Jake. It was like being touched by him I was being touch by God. Such a special and beautiful soul." As a parent and after all we've been though nothing is as touching as hearing that Christ continues to use our son. If someone so small and without word can portray Christ's love that way, how much better should I be able to with words and experience on my side? But maybe those two things are the very abilities that hinder. After all Jesus was the one that spoke for us to cometo him like children for such is the kingdom of heaven....

Just a few thoughts... Pls ignore the spelling errors.

Melody
Sent from my BlackBerry® wireless device

Happy Day

2008-05-21T10:17:00.003-06:00

Jake is up and at it this morning, his spirited self. Everything went fine over night, Kev stayed with Jake and I headed to my aunts after a long day. We will be heading home already as Jake is the fasted healier around. Keep us in your prayers and we need to be on the watch for infection over the next month. I added a few pictures of Jakes weekend at the lake!

Mel

A good day.

2008-05-20T20:01:00.000-06:00

Jake's surgery went off with out a hitch. They put a new tubing from the valve at the back of his head into his ventricle. This tubing is much longer, to accomidate his growth for the last year. The great part is that its the same size as an adults, so it shouldn't need changing due to size again. Also they put a different valve in that is for "adults". It flows more consistantly when lying and standing now that his head is fully formed (no soft spot).

There was a small amount of bleeding when the old tube was being removed, so keep that in your prayers, its bad only because that little bit of blood can clog the new valve, which they would again have to replace. We're mostly in the clear after tonight.

Kev's asked to stay the night with him at the hospital, so im off to my aunts for the night.

In one month is the peak risk of developing an infection so keep us in your prayers.

Ill try to write tomorrow!

Love,
Mel & Kev
Sent from my BlackBerry® wireless device

Surgery

2008-05-20T07:56:00.001-06:00

Jake will be having a shunt revision today at noon. It's not a huge surgery, but every one is big to a parent. After all the trouble he's been having with the shunt this month they feel its best to lengthen the tubing from his valve into his head to allow for more growth. It will be done by scope with just a small incision. One night in hospital if all goes as planned.

I'll update our blog after surgery to let everyone know that things went well. Wish i would have realized i can post from my cell-phone last July!

Melody

PS. We were able to see Jan this weekend. His is so amazing, and Gods hand in his life and on his heart was so évident. He even called the cabin the next day to say thanks, his trach was capped and he is now able to fully talk. God is so good.
Sent from my BlackBerry® wireless device

Mothers Day Fun

2008-05-13T22:56:00.000-06:00

We enjoyed a relaxing day in the sun north of Fort Mac. Jake enjoyed playing in the dirt while mom dirt biked around. And what outing would be complete with out hotdogs?

Mel

Spring Days

2008-05-11T12:18:00.000-06:00

A few photos of event over the last weeks... M

News about Jake

2008-05-09T23:01:00.001-06:00

So we met with the neurosurgeon this afternoon and he feels that Jake will need a shunt revision. The question is just when. Right now theres no swelling in the ventricles, but it's leaking small amounts of fluid around the site in his head. So we are to be back in 2dmonton Thurs next week, unless he seems more affected earlier in the week.

Keep him in your prayers this week, as he is having periods of unrest.

All in all it's'good news, nothings happening thats damaging anything or causing immediate concern.

Melody
Sent from my BlackBerry® wireless device

A Jake Update

2008-05-09T10:53:00.000-06:00

We've had a long couple of weeks with Jakes shunt. It developed mild fluid collection around the pump, and we've been concerned about increased pressure in his head. Yesterday we saw our pediatrician in Ft Mac. Jakes blood pressure was slightly high which falls inline with a problem with his shunt. So at 8pm last night we packed up and drove to Edmonton. We're meeting with a different pediatric neurosurgeon, since ours is away till Monday. I'll keep posting.
M

The long road to recovery...

2008-05-08T09:22:00.002-06:00

There's a blog for Jan step on at the following address, this will allow notes of encouragement for the family. Please see it for more information.

http://ashleykascak.blogspot.com

M

Sad news

2008-05-07T13:20:00.000-06:00

A quick update on Jan:

A few clarifications from yesterday to get everyone on the same page. Jan was hit head on while returning home on his mountain bike in the morning. It was a hit and run, however the police have located the van and have possible leads to the suspect. He was talking when the ambulance arrived at the hospital, however with the high risk of a head injury (brain swelling) and pain management the medical team choose to induce a coma, which requires the person be intubated (a breathing tube) and on “life support”. He was transferred from Pentiction (spl?) to Kelowna ICU yesterday night, and was “declared” stable in the evening. Ashley and Kim are at the bedside as well as Jan’s mother Ann. Amanda with her fiancé Neil Hilman flew out there yesterday afternoon.

My mom called this morning (her and my dad went out to be with Kim and the girls). Jan is stable, and so far clear of brain damage, however that takes a few days to totally be in the clear. He has a collapsed lung that last night seemed to resolve with a chest tube. A broken femur and wrist, multiple fractured ribs, and his face is very damaged. There is a chance that a vertebra is displaced so he remains in a neck brace and their not moving him until the specialists have taken more x-rays today.

His face is going to require much care and attention, a plastic surgeon will be visiting the family today. Both cheeks, his jaw and nose are the majority of the fractures. I imagine (knowing a little of the medical field) this will require multiple surgeries, a few plates and possibly wiring his jaw shut. He remains intubated (a breathing tube), also called ventilated, because of the severity of the facial damages. He will have a tracheotomy (aka trach) today, which is a small hole through the lower throat to insert a breathing tube. That will allow them to operate on his face without the tube in his mouth. While his face is healing the trach will allow Jan to talk with out needing to breath through his nose and all the swelling. This will be a long road to recovery.

This list of injuries seems endless, however a quick glance at the positives…. God has already answered prayers.

While bones take time to heal, brain damage has life long impact on a person and family. Praise to god that he has already had his hand on Jan’s head. To all those bikers (both motorized and unmotorized) Jan would not be alive today if he hadn’t been wearing his helmet.
His lung seems to be re inflated and working better, and they think it might not have been punctured.
All the family was able to be here loving and supporting him. Had this been weeks earlier Ashley would be alone on the other side of the world.

I gave Amanda a quick pep talk yesterday before she flew out, and feel that it applies to everyone.

We believe in an all powerful God, one that listens to the cries of our heart and never leaves our side. Don’t stop praying or believing that he will do miracles. Our son is a powerful testimony that God does miracles, answers prayers, and uses tragedy to touch the lives of people around us. Don’t loose faith, our God is an awesome God. All we can do is continue to pray.

Alright it wasn’t quite that eloquent, but she got the point…. J

Moving forward...

2008-05-05T15:05:00.004-06:00

I know its been months since I last posted. Things are going well. Jake is growing like a weed. Here is a clip of his newest accomplishment... I'll try to write soon.

Melody

Busy month!!!

2008-02-26T20:17:00.006-07:00

I can't believe that it's been over a month since I last wrote. These last weeks have gone so fast, I would believe they happen if I didn't have some photos to prove it did.

Jake is growing so fast. He's almost crawling, but only going backwards right now. Talks all the time, and found a new habit at Grandma "T's" house how to blow raspberries while eating. He's loving his new jolley jumper from Grandma Hilman, get's so excite jumping!

He had his Spina Bifida Clinic the end of January. Everything went mostly good. The only thing is he has to have a small surgery in March (the 14th) by the urologist. And the other development is a small amount of urine reflux into the kidney's. This isn't a problem unless the child is having urine infections that move bacteria up into the kidneys. Jake's been infection free, quite an amazing thing considering we are catherizating daily to make sure there isn't any urine sitting in the bladder. Prayer for this last thing would be helpful, kidney failure is the greatest long term complication for spina bifida. We have such a great team of physicians in Edmonton!

We took two weeks and went to Hawaii with Jake and my family. It was fun even though the weather wasn't that great. My parents took him home the second week and Kev and I were able to spend some quality time together. Very nice.

Fort Mac is continually on the go, the guys have moved into the new shop and it really helped to organize everyone. Lots of work on the horizon, hard to imagine it ending.....

I'd love to hear from everyone,

God Bless!

Looking back....and forward.

2008-01-16T16:33:00.000-07:00

We were luck to be able to spend the holidays with family (both Kev's and mine). What a great time of fellowship. We were all spoiled.

The Sunday before New Years we attended church in Banff, a great service of sharing God's hand over the last year in peoples lives. I didn't stand and talk, even though there was so much on my mind. Problem is where do you start when so much has happened... I still feel lead to share some (not all- for lack of time :) of those thoughts....

Kev and I have been, stretched, twisted, molded, pushed, picked up, held and lead by our Heavenly Father. Never did I realize how much growth I needed. We stepped out of our comfort zone, into Gods "caution spirit moving" zone, to learn the power of prayer and what "stepping out in faith" feels like. I say feels because I always thought I knew what it was like, but after searching Gods will and trying to walk towards it we've realized that it is scary and overwhelming but God rewards with that action with peace.

Peace, God's Peace.... sooooooo worth it.

It bring me to tears to see God working out of what I at one time didn't want (please read March 07 to understand that statement if you haven't) .... our son. We are humbled when we reflect that in Jake's short life (6mths now) he has shown God to as many, if not more, lives than we have in the last 10 years... pretty humbling, but what a challenge. He is our little miracle boy, and everyone knows it, believer and unbeliever.

Healing.... this is something that is so touchy in the church today. Some believe without a doubt that God still uses this, in its physical meaning, today. Others believe that He works through people and doctors. And even more feel it was used only in the early Christian church. So where are we? James challenges us to have an active faith, something that Kev and I felt included stepping out of our comfort zone and praying with our elders for healing. Don't think this was second nature, or easy. It was hard, so hard. Was there lighting and miracles? Not literally, but when you hold my son don't for a moment think God didn't listen. Doctors told us he might walk. He'll walk no problem, the question is how fast will he run?
We talked with a friend recently the decision focusing on healing. After Kev and I reflected on where we stand on the topic. We concluded this. God wants active faith. Faith that if you've asked, He's heard. Steps of action, showing belief. So we prayed, knowing God heard. And we live every day thankful for what we have been given.

If Jake wasn't different that everyone else I'd never have the chance to discuss God with so many people. Today we are thankful for his difference. What a long way we've come.

I've rambled on a lot, so on to lighter things. We're heading to Hawaii for a short vacation this Feb. Very excited as the cold is starting to get to me..... Enjoy the pics, I'll right later in Feb.

Gods Peace,
Melody

2007-12-06T09:52:00.000-07:00

So much happens so fast when your having fun!

I forgot to write in November. Actually it's not that I forgot but more so haven't had time. We've been busy with our new shop, I've helped with all the interior design for that and the 8 houses we have on the go. Also we started building our house outside of town. The basements in and they are to start framing before Christmas.

I wrote thank you cards/Christmas letters this month, check your mail they should be coming soon. It was overwhelming because of how many people have reached out and showing us love and compassion through out our journey. Over 24o thank yous..... crazy.

Christmas is approaching fast and that means parties and travelling. Jake loves the car so that makes things easy. He got to experience his first hockey game in Oct, my mom and I went to the Oilers/Colorado game in Edmonton when we were there for his doctors appointments.

Jake is doing so great. Finally catching up to his milestones, rolling from front to back, grabbing toys, eating a little rice cereal. Growing like a weed. Over 20lbs!!! Must be a Hilman thing. He also cut his first two teeth last month! You can kinda see them in the photo.

My heart is so full at this time of year as we reflect on the blessings and provisions God has given us. If I would have guess how we would feel as a couple come Christmas last spring, it wouldn't have been with the joy and excitement we have. God has been our rock and continues to fulfill his promises daily in our lives.

All to Jesus.

Days Fly Into Months...

2007-10-28T21:51:00.000-06:00

I logged onto our site tonight to see when the last time I wrote was... and to my shock it was over a month ago!!! Sorry to all those that keep checking it for more pray requests and updates.

We had some big appointments last week in Edmonton with every specialist possible. All is great, better than we dared hope they would be. God has been so faithful to all the prayers. Never can anyone say that God didn't hear our crys (yours as well). Jake will run, not only walk! Maybe with some ankle braces, but never mind that. Also his kidneys are working great! All this is to afirming to us.

He's growing like a weed. Weights more than his cousin Matson. Hitting all his mildstones, talks away to us. He even went to his first hockey game last week.

We continue to praise our Lord for his gracious provision of health. Please continue to keep us in your prayers.

Melody

A heart of Gold...

2007-09-26T23:17:00.000-06:00

I don't have time to write a full update right now, but I wanted to say that we're home and all is well with both baby and mom and dad. I'll try to get a good update early next week. I'm taking my sister away for a few days as a 21st Birthday gift so I'll be out of town and baby is having a sleep over at Grandma T's house!

One of our cousins sent us this email, and with permission I want to share it with everyone. It so describes everything we've been feeling. Amazing how God gives us a glimps of others hearts, so pure and gentle...

"Just a quick note of thank you for allowing me the opportunity to spend those hours with your son. Honestly, I was nervous about the whole situation... you both know me, I am a perfectionist that worries about the fine details... I was worried about what I could do for him... somehow God turned the whole situation around. I did virtually nothing for him (perhaps popped his soother in a time or two :))... But rather, it ended up that he did SO much for me. I sat there watching him and was so awed by the perfection of God's creation that it brought tears to my eyes. How can one being be so precious? I wonder how it is possible that one little being can so completely steal ones affections through no 'work' of their own. What is our criteria for loving someone? If they can do something for us? If their personality is winning? If they view things the same way we do... Little Jacob has done none of this... he has not sought to win our affections... love spills from our hearts through no real doing of his. Something is coming to me... that is exactly how God sees us through the lens of His son... he doesn't see what we do for Him, he doesn't see what he can get from us, he doesn't see any of that... he sees the perfection of His own creation. He loves us because we are His creation. That is all. It is in our very inability to do anything for ourselves that He loves us. Hmm... interesting. There is something so absolutely precious about that son of yours... Like I said to you earlier Kev... it is beyond words. Even as I was praying for him last night, no words could express what I felt... thankfully we have been promised that through the Spirit, God understands the 'groanings' of our heart. "

Such sweet words, from a sweet person.

We love you.

A long day.

2007-09-17T21:28:00.001-06:00

So Jake made it though his surgery wonderfully today. He was sleep most of the afternoon, but gave mom a smile right before she left. He seems to be mostly his self this evening. The shunt is on the right side of his head, and only a small incision shows the "war wound." Under the skin there is a bump almost like a little worm about 2 cm long on the head and that is all you can see. There's also a small wound on his tummy where they coil a yard of tubing so he can grow and hopefully never need another procedure. Hopefully, God willing.

Kev is staying the night with Jake. It was harder on me than I thought it would be today. Guess when its your own child in pain and discomfort it pulls your heart strings. I'm going to get a nights sleep by myself, and already I'm lonely for my men. Their in good care with the nurses so I should rest well.

Again God has shown his grace in walking us through another journey. We feel so blessed to have him holding our hands and comforting. Thanks to Him for guiding the surgeons hands during the procedure, for giving the nurses the knowledge to care for him, and for providing us with loving supports from all sides.

Goodnight.
Melody

In Gods Hands

2007-09-17T21:28:00.000-06:00

Jake has had a rough couple of days. Things seemed to be going so well, he even slept through his first feeds five nights in a row. On Friday/Saturday Kev and I started to notice he wasn't himself. Very fussy at night, throwing up and a few other things. Finally after a very long night on Saturday we decided to call our neurologist. After a short discussion he asked that we make the trip to Edmonton for a check up first thing Monday morning. So we packed up after church and again came to Edmonton.

We had a MRI first thing Monday and then met with the neuro team. Although there is mild change since our appointment on Sept 7th the "clinical picture" (which is what the behaviour of the patient is) finally matches enlarged ventricles (fluid on the brain). Jake is scheduled for a shunt insertion tomorrow (Tues Sept 18th) at 9am.

The amazing thing is we feel totally happy and at peace with this decision. I keep waiting to feel out of control, more hospitalization, more medical gargen to learn. Yet as we sat in the pre-op clinic waiting to meet the anesthetist I turned to Kev and shared how totally blessed I feel we are with Jake. There we were watching parents with children with hundreds of medical complications and conditions, and all were facing is spina bifida. Only a shunt. I know this might not make sense to everyone, after all we have to face things most families only dread the thought of. Yet in Gods amazing grace we're not facing half of what others in this hospital are. And we have the protection of heaven and God's personal angles to carry us through.

How totally blessed we are.

My parents are in Europe so my sister is coming to be our "third wheel" and constant helper. Another amazing thing how illness brings out the best in those around you. We appreciate her and everyone that has played a special part in our child's life. Also the prayer warriors that have kept us in their thoughts. God has been so faithful to your prayers we hope you all see that.

Keep praying. I'll do my best to update our blog tomorrow night, or sometime during the day.

We love you all!!!
Mel

A good nights sleep

2007-09-11T09:59:00.000-06:00

It's been a long time since I sat down and wrote from the heart. That type of writing takes so much time and emotional energy. However since we had our best night yet with baby, I'm feeling totally refreshed.

I was holding this precious gift during a 3am feeding a few nights ago, when I really started to reflect on the last year. At this time the idea of parenthood was exciting, and the dream "perfection," slowly through pain and trials we have still been given that dream. Jake is perfect. Maybe not always in behaviour, but he was created by God and in that is perfect.

We dedicated Jake to our Lord on August 26th in Banff. It felt like the completion in a circle started at that church. This spring we knelt with elders and family petitioning God for healing, promising (much like Samuel's mother) to give our child back to Him for his plans. Some would challenge me on this, saying "but his wasn't healed" but I disagree.

When we started praying for him we had no idea what extent was wrong. In faith I believe that God did answer our prayers. Jake will walk (with a little help) and he is so perfect. Kev and I emotionally have done so well, far better than we ever could have on our own. These things alone show Gods grace.

I'll never be able to comprehend that some felt my baby wasn't worth keeping. Now holding him, seeing him smile, I'm so thankful for the support and prayers that helped keep us from making the worst decision of our life in terminating our pregnancy. And Jake is more thankful.

We were so touched by the numerous showers and gifts that both friends and family have given. Our heartfelt thank yous to everyone. And more importantly thank you for your continued prayers. Our baby has had more prayer in his short life than most have in a lifetime.

God Bless.

Life as a parent.

2007-08-21T15:55:00.000-06:00

So were getting used to early morning feeding and diaper changes. Jake makes his presence known constantly, so he's getting lots of cuddle time. I however am getting little to nothing accomplished in a day. But we're doing our best to enjoy this period of time, but it's taking a little adjusting.

We've been getting out and doing a few things, BBQ's and visiting. The cousins have been introduced, but I don't have any good photos cause Jake is always crying! Next week we're going to BC with my mother to enjoy the last week of summer. Oh ya and Jake is getting dedicated in Banff on Sunday the 26th.

I have to cut this short, once again the baby is screaming. Thanks for all the prayers.

Mel

Home Sweet Home

2007-08-06T18:53:00.000-06:00

So I know everyone has been waiting for a in depth update of our lives, and like usual we apologize that it's taken this long. Things seem to go so fast, and yet little gets done. He's an overview of the last few weeks.

We were moved from the NICU to a close observation room on Tuesday July 24th. This was an extremely trying time for me as mom. Having your own one-on-one nursing for the first week of your child's life is a hard thing to let go. It was as if they had just abandoned me and our baby. Not that they had, but the emotions surrounding this transition was so challenging. Jake was still have periodic apneic spells but they seemed to be improving.

After a few days on the floor with continuous monitoring the pediatrician doing rounds informed me that he felt it was time to "wean" mom off the monitors. I didn't realize how dependent I had become on the continuous feed of oxygen saturation and heart rates. It was as if I wasn't watching my child for signs of life but just the monitor. Any parent that has spent time in an ICU must feel this way. I have a new appreciation for the "difficult" parents that I've encountered on the pediatric unit, now understanding that loss of control.

We were discharged on Friday July 27th.

My oh my. What a challenging step in the whole situation. See we never were given a reason to the apnea spells. Just that they would get better (he'd out grow them) or they would get much worse. We spoke with specialists and they all concluded that there wasn't much to do at this time. The neurologist was convinced that they were not related to the increase pressure on the brain, and didn't want to make the life long decision of shunting based on the clinical picture.

I called my mom overwhelmed (as all first time parents do) with the responsibility of taking care of this baby. Cried my eyes out in the bath and fell into bed exhausted after two weeks of sleeping at the hospital.

We survived that first night on our own.

It's been so nice to be home. My mom can up this week and helped me normalize my child's behaviour and unpack our house. It was so good for me.

One piece of advice I'd give parents who's child has a "diagnosis" of any type is try to separate the disease or condition from the child. This has been a daily struggle for me. Every funny facial grimace or cry I want to run to the doctor and ask if it's related to his spina bifida. But beyond all that is a child, with a big personality that will take time from us to get to know. My pediatrician gave me a great bit of advice. "Throw out all those books, you will know, instinctively know as mom if something is wrong. Momma knows, listen to your maternal instinct." I'm working on it and it's been fun getting to know Jake.

Thank you for all the prayers, they have been felt. God has been so good to us we have many blessings to be thankful for. Jake will walk, having almost all the movement of his legs and feet. He doesn't have a shunt as of today, but the final decision will take up to 6 months. We were only in Edmonton for a week waiting, where it could have been a month. The hospitalization was short, only a few weeks and Kev was able to be with us the whole time. And best of all Jake hasn't had any apneic spells since we've been home. These and so much more. Praise God.

Monday July 23rd- Day 9

2007-08-03T11:17:00.001-06:00

We had a great night! No apneas, feeding well, and settling better. However Jake did think he’d be charming and visit with wide eyes for an hour after each feeding through out the night. Why can’t we do that in the day and sleep in the night?

Dr. Aronyk was thrilled with the night, and no changes in Jake’s head size and status means no shunt for now. We will continue to watch for apnea (which he has had two small ones this afternoon) and try to find the reason for it.

Another bath today, no more oxygen tubes, IV, or such. He even got to wear clothes for the first time. Please continue to keep the apnea in your prayers. Sometimes even the smartest physicians are unable to give parents reasons for behaviours such as this. I’m terrified that we may not know the reason and I have to go home with him. We might be moved out of ICU tomorrow if the day goes well. Possibly even be discharged by the end of the week, beginning of next if there are no changes.

Amazing. Utterly amazing.

Sunday July 22nd- Day 8

2007-08-03T11:02:00.000-06:00

Last night was long and stressful. More apnea, Jake was feeding well but hard to settle, seems to be having some gastric reflux. It may be related to the feeding tube. It causes the top of the stomach to stay open, allowing acid to move up. Daddy Kev stayed up after the midnight feed trying to settle baby for a long time. Mom got a few hours of restless sleep.

Jake wouldn’t wake up for his noon feed, actually I tried and tried to get him awake with little to no luck. It was scary because we’d been warned that lethargy is a sign of increased pressure in the brain. The neurosurgeon came a few times and carefully checked him out. The shunt would be an easy fix if the problem was related to the fluid on the brain, but this one decision lasts a lifetime and making it for the wrong reason would be equally bad. The operating room was notified of the pending decision and prepped incase Jake needed it immediately.

Finally at three Jake got restless and ate, and then ate again at 4:30, and then at 7:00. Talk about making up for lost time…

The need for a shunt will be re-assessed first thing in the morning, pending how the night goes, and changes in his “clinical picture.”

Saturday July 21st- Day 7

2007-08-03T10:49:00.000-06:00

Jacob is a week old today. He settled early this morning, and now is sleeping peacefully. They inserted his feeding tube back in and started him back on feeds through it. He seems to be doing 100% better.

I rock him early this morning and pour out my heart to God. Surround him with your angels, one touch of your powerful hand Father. Heal his pain, take away what burdens him. Give him rest. Heal him…

By lunch he is off oxygen, breastfeeding again, and curled soundly, sleeping like a baby.

The afternoon when great but we started to have more apnea spells around dinner. Praying that the night will go better.

We may never know what was wrong, but I know God does. The doctors feel it could be pain and increased his analgesic. Could still be that urine culture… but does it matter?

He’s in God’s hands.

Friday July 20th- Day 6

2007-08-03T10:41:00.000-06:00

The terrible, horrible, no good, very bad day.

I had a book named that growing up. Today has been on of those days. It started out good, Jake continued to feed well. But he is restless and unsettled. Around noon he started to have breathing pauses, apnea spells. I was calm for the first few and then a nervous wreck.The doctor on call has put him on oxygen, stopped his feeding, ordered blood work, urine samples, ultrasounds, and xrays. All to see if they can find the reason for the breathing problems.
The day is the longest in my life. I’m a blubbering basket case, unable to comfort my child. He cries all day. It tares my heart out. Never have I felt so helpless.

They start more antibiotics to cover the chance of infection. Look for aspiration in the lungs from feeding. Check the size of the ventricles to see if it’s increased pressure in the brain, requiring a shunt.

Everything seems to be fine. The blood works takes a few days, as does the urine. But Dr. Aronyk doesn’t feel it’s related to the brain. This is good, but leaves us unsure as to why the breathing problems.

Kev is my rock today. He sits at the bedside through the whole scary time, trying his best to comfort our child. I walk back and forward from our little room, crying. My heart breaks with each cry from our little boy. God what is going on?

I’m emotionally spent by midnight and literally crash. They have given Jake some sedatives, but he remains restless like something’s really wrong. Kev gets up through out the night to check on him.

God grants me sleep.

Thursday July 19th- Day 5

2007-07-23T16:47:00.004-06:00

And so parenting starts. I’ve been looking forward to feeding so much but fell overwhelmed with the enormity of the task as it begins. I have to be at demand of our little boy for the next who knows how many months. That is a little overwhelming as I am already having a hard time catching up on sleep. But Jacob is a pro, he catches on right away, and we’re feeling very positive. He had one spell of apnea this afternoon while feeding, and no one is sure why. They will keep us in ICU for a few more days to monitor.

He’s feeding tube was taken out later in the day. One less cord attached. I get to spend the night now that he’s breastfeeding. Also he gets a day of tanning under the lights to help lower his bilirubin.
Exciting and yet I feel sorry for Kev because he’s feeling a little left out of the pajama party. Soon we’ll be home and he can be part of three am feedings! Jake also had his first bath tonight, and loved every minute. Must have parents that like the water.
God continues to pour blessings over us. Can you believe some people thought this boy wasn’t worth keeping at 18 weeks pregnant? What a horrible mistake that would have been. He is so perfect, absolutely a picture of Gods handy work. The love of parent is overwhelming, so much so fast. Nothing in the world compares to it. Thank you Father!

Wednesday July 18th- Day 4

2007-07-23T16:47:00.003-06:00

Our wide eyed wonder.

How precious he is. Doing great! No breast feeding yet, but they inserted a small tube through his nose to give him my milk through. 3mls the first time! They will slowly increase it over night and if he’s tolerating it well by morning I’ll get to start feeds. Again another ultrasound shows little to no change in the fluid on the brain, so no shunt for now.

Another day of cuddles and much exploring, both by Jake and us. Again we feel the presence of the Holy Spirit surrounding this child given to us. What a wonderful world.

Tuesday July 17th- Day 3

2007-07-23T16:47:00.002-06:00

No more breathing machine! What a nice surprise when we arrived at the hospital. He is getting food through the IV because he still remains very sadiated on the morphine. Hopefully tomorrow well begin breastfeeding. I’ve been pumping around the clock every three hours to keep my milk supply. So far, so good.
The day was filled with much cuddling. Dad tends to hog the baby, we might need to get an egg timer so he gives others equal time. But I wouldn’t change a thing. He continues to improve at rapid rates. God is so good. I pray he is as much a blessing to others and he is to us.

Monday July 16th- Day 2

2007-07-23T16:47:00.001-06:00

So finally the update that everyone has been waiting for. Our apologies that it’s taken a week to fill those of you far away in on more details of our journey, but it is well worth the wait.
Jacob remained intubated (a breathing machine through the nose into the lungs) for today.

With the morphine they had him on for pain controlled he was calm and comfortable. We enjoyed the day of getting to know the features of this precious gift. His hair is the most beautiful colour (not that I’m a little one sided!), almost golden.

Jake’s ventricles remain stable, as seen through an ultrasound of the head (no increase in fluid on the brain). All ready he’s daddy’s boy. God has been so faithful in answering our prayers. He continues to kick with those little legs. All glory be to God.

Here we go!

2007-07-17T17:19:00.000-06:00

So much to our surprise my water broke July 14th while we were puttering around Babies'R'Us, very ironic! We picked up our bag and headed off to the hospital. What and exciting feeling to know that this is it, not to mention having no contractions and feeling just great!

We were given the option of waiting in hospital until I naturally progressed into labour, which I hear can take up to 3 days, or an induction. So we opted for the later and at 5pm got the process going.

I was set on not having an epidural but at 6cm and fully effaced, baby facing up, and tons of back labour I broke down and asked for one "sorry what did you say" our nurse laughed, "GIVE ME THE EPIDURAL NOW!!" 30 mins later I was resting in bed. Can you say AMAZING?! Why I waited I'll never know.

Labour and birth is such an intimate experience for a couple. It's so wonderful to see how husband and wife can draw together, with God's help, and experience one of the most beautiful passages of life. Okay so it isn't "beautiful" as it happens, but the ending is beyond words.

12 hrs later @ 4:55am little

Jacob Kohl Hilman

completed our family,

a true blessing from Christ.

God has given us so much joy, and much more than we were prepared for...

Example A) We got to spend 30 wonderful, amazing minutes holding our son.

Wait correction..... I got to hold, since Kev got to go with babe!

Kev went with little Jake in the ambulance over to the Stollery, and spent the day watching him. He is such a natural father, observing every move and even filling the nurses in on a few things! I was discharged early afternoon and dragged my sleepy tail over to see our son. He is perfect. Every inch of him is God given perfection.

At 8:30pm Jake went to the operating room under the wonderful care of Dr. Aronyk, and mom and dad went for a celebration supper. He arrived back to the unit, with a little breathing tube in his nose, and did awesome. As of yet Dr. Aronyk feels he will walk with little to no support. Praise God.

Kev and I were talking as we headed home that night about how God answers prayers in his own way. We struggle to grasp the reason for this, yet rest in his unending grace knowing that He is God, and will always be God. Some might challenge that Christ listened to a young couple calling out for a miracle at 18wks in a pregnancy gone against the grain. But when our son shines as bright as he does no one can deny God hears, and answers prayer.

Moving, weddings and contractions...

2007-07-13T07:40:00.000-06:00

So I'm finally down in Edmonton for the duration of our pregnancy. The last month has been full of events, all great fun. Where to start.

We officially sold our house in Fort Mac mid June. The remainder of the month was spent packing and moving bit, by bit. Thanks to all those that helped, being pregnant I was the least helpful through out this event. Mom and Kristen (my sister) even ventured up north to lend a hand. All is much appreciated.

Kev's company golf Tourney was held on the 30th. It was such a success with almost 60 people. I even swung my clubs, adjusting my swing to accommodate my ever expanded belly, and managed to get in a few prizes. Such a great time. I'll post some pictures if I remember.

Candace were married on July 9th under our heavenly fathers glorious creation outside of Canmore. The event was filled with love and laughter, family and friends. Candace was radiant in her happiness, by far the most beautiful bride. We were thankful to be part of such an intimate event. They now are honey mooning in Italy and Greece until the 26th.

They are also having an open BBQ @ Red Deer on Saturday the 28th of July. All are welcome, you can call Caley Hoskin at the office (780-743-8817) for more information.So I've covered all the moving and wedding, on to contractions...

Yesterday I started in "pre" labour. I was 2 cm at my doctor's appointment in the late afternoon. Nothing happened over night, although I slept like a baby. I'm hoping and praying that things will move along today. But that's totally out of my hands. Dr said it could be days, but also a couple of weeks. The only thing that is supporting it being sooner than later is that I went from 0-2 cm in one week, so the progress was fast. I know that everyone will be anxiously waiting an update, I'll try my best. But until the little guy is here I will be slightly occupied, if you know what I mean.

God has been so good to us. We've been blessed with family and friends that have provided us housing, and such here in Edmonton. We are so thankful for those that have contributed to making this difficult time easier.

Love, Melody

Slow down? Never!

2007-06-17T23:00:00.000-06:00

Daisy is the official flower of spina bifida.

The second week in June a photographer in Red Deer took some amazing photos of Kev and I. It was such a celebration of this baby. After everything we've been going through it was fun to stop and enjoy the excitement of expecting.

So like usual Kev and I have been gallivanting around the world. He surprised me this weekend with a trip to L.A. for a last get-a-way as non parents. It was great. We did much of nothing, and I introduced our little guy to life on the beach (which he informed me with much kicking isn't his favourite activity).

I have to praise God for the continued movement of our baby. He is such a fighter already, I never thought that something so little could cause so much discomfort. But I am grateful and Kev teases me that I love it (every minute). I wouldn't change it for the world. We are faithful that God will continue to answer our prayers. Last week we had an ultrasound and he weighted in at a health 4lbs 12oz.

Nate and Julissa (Kev's brother and wife) had there newborn via c-section on June 4th @710pm. Matson Dean Hilman is a healthy 7lbs 10oz and 20in long. He is so precious and beautiful, a perfect fusion on Nate and Julissa. I've been over lots to help with house work and meals. Even managing to sneak in a few cuddles. It's been a bitter sweet (but more sweet) experience for me. My heart envies them getting to spend the first weeks of his life at home, struggling through the things first time parents do. Exciting in the newness of a baby. Our experience will be shaped so different...

Some have been wondering what they can expect in the first few weeks with us. I've asked Dr's and they give a description of all extremes, telling you we'll be somewhere between that. Trying my best to break it down here's what were expecting.

I will be relocating to Edmonton prior to my due date to sit and wait for him to come. Can everyone repeat with me "BORING"!!!

After labouring as naturally as possible, hopefully with a vaginal delivery, we will get to spend a few moments with our newborn. "Don't worry, you'll get 15mins with him" one Dr said. I sat in shock. Don't worry? I've been carrying this child for 9 months. I love him so much. I dream about cuddling him and hold him. Smelling him and bonding. Your going to take him away after I've gone through the pain of birthing him.

15 beautiful, precious minutes.

The baby will then be transferred to a different hospital in Edmonton. The high risk obstetrics group works out of one hospital, the Stollery (children's hospital) another. Baby goes and mommy stays and goes crazy..... or at least is expecting to go crazy. Mom will discharge herself if the Dr's don't let me leave, trust me I am not spending a moment more than absolutely necessary away from the baby.

Little guy will go for surgery in the first 48 hours, but most likely first 24 hours. He then will be carefully monitored with ultrasounds of his ventricles (that's the fluid on the brain) for a week to see if a shunt (tube from brain fluid to abdomen) is needed. Something for everyone to be aware of- leg movement will be unknown for the first week. So please don't ask. The trauma of surgery to the spinal cord shocks the nerves so they need at lease a week before we will actually know the extent of nerve damage. During this time please pray with us that God will be mending his little nerves so he can have as much mobility as possible. Pray, fast, whatever you feel lead to do....

After that first week we'll have a better idea of where were going, what complications we may face and how long our stay in Edmonton will be. The Dr's have asked us to prepare for about a month.

We would love visitors, not campers. And how soon is unknown. I'll do my best to update all our faithful prayer warriors daily on his (and our) progress. Everyone is so excited to welcome this life into our family, after all we've been going through we feel like we already know him.

We meet with our new ObGyn next week, so keep your eyes open for a post then.

May 22 appointment in Edmonton

2007-05-26T11:42:00.000-06:00

So we had another check up in Edmonton on May 22nd, with our bazillionth ultrasound. Baby is doing great 3 lbs 8oz! Right in the middle of the age/weight charts. The ultrasound tech asked me if my husband is tall because baby's legs are very long! Tall and skinny like his father. For some more specifics: the baby's ventricles (the fluid on the brain) has remained stable since diagnosis. Dr. D was very happy with the minimal changes with the fluid. While there is conflicting evidence to support inutero leg movement being positive, Dr. Aronyk (the neurosurgeon) says it is positive, our baby is still kicking me unceasingly, and unmercifully.

I have to smile with the greatness of God's creation when he's wiggling inside me. What an amazing thing to carry life so precious. After all we've been through I keep telling baby "you kick me all you want, show me your a fighter, and show the world God is great".

So we continue to wait with the utmost peace in our hearts. God has given us a perfect gift, all ten fingers and toes. I'm convinced that his nose is just like Kevin's. Only about 8 weeks and we'll know.

God Bless,

Melody

Time is flying by...

2007-05-20T10:54:00.000-06:00

Hi All,

My apologies to those that have been checking our blog regularly. We have been busy with spring which seems to bring much work and play. I'll not be posting much over the next couple of months until I am in Edmonton after the 9th of July. We have lots coming up and there hasn't been any change in the status of our precious little baby. Your prayers and love are always felt, please continue to keep us in your thoughts over the next few weeks.

The happenings of the Hilman's:

Kev and I decided to put our home up for sale this month in a step towards moving to a 2 acre lot outside of Fort Mac, although this home won't be finished until next year. In the meantime we are moving across town to a new home of the company's. It's exciting but also added work. Cleaning, showing, packing, moving, etc. Luckily I was raised in this fashion (having lived in many homes growing up) so my mom is coming to help show me the exact method.
I'm back at work 2- 12hour days a week at the hospital. They have been good to me, but I'm still finding the days very long being on my feet. They are starting to swell, the joys of pregnancy. Who new growing a baby is so much work.
Julissa (Kevin's brother's wife) is getting close to her due date (June 10th) so we've been spending time together talking about the exciting and nervous parts of what's to come. I'll be busy in June helping them, something we're all so excited for.
Candace (Kev's sister) has just finished her nursing practicum in Fort Mac and last week was hired on the same unit I work on. It's been such a joy having her around. Also she is getting married on July 9th (a small, intimate, immediate family event by Canmore) planing and preparing are another busy event in our lives.
Dirk biking, golf, work, flying, baseball, mud-bogging, jogging, and other events are just a few of the past times of Kev this last few months. Like always nothing can slow those boys down.

An update from our last visit to the perinatoligist in Edmonton (April 22).

No news is good news. Baby is doing well, still kicking and moving around. No increase in swelling on the brain, which means as of this point there is no hydrocephalus... but that can change. He weighed in at a big, 2lbs 1oz and growing.

We have our next appointment on May 22nd in Edmonton and then May 30th with our OB in Fort Mac. I'll try to find time to give everyone a quick note of any changes.

Kev and I spent the long weekend at the Lake in BC with family. The weather's been beautiful. Kev and my brother are golfing outside of Vernon.

Love and prayers,

Melody

Spring + God = New Hope

2007-04-05T12:55:00.000-06:00

There's something about the spring that fills one with a new expectant hope. Something growing, just as the tulips are sticking there heads out of the dirt. Something exciting and promising. But also a lesson to be learnt. While the days are warm and sunny, nights are very cool even frosting still. See bulbs, like people, need to be seasoned. Slow in coming, taking time to get aquanted with the weather before they allow the delicate flower pettles to be exposed. While I long to see the beauty that is developing under the soil, it needs to come in Gods time to last. Just as our love for this special baby boy has been weathered, it needed it to be strong and of the highest quality. For this I am so thankful to our Lord.

I took the week and headed out to my family's cabin in BC to visit and spend some quality time with family. It's been wonderful. The weather is beautiful, sunny and warm (compaired with our usual Fort Mac weather). We've taken daily walks, spent hours visiting and mostly enjoying the gift of fellowship and friendship. A few tears shed, but mostly laughter and smile's. Kevin is driving out to join us for Easter.

While there are moments of sadness the last week has been filling us with a renewed joy. Good for us (myself and the baby). Peaceful. Thanks again for the prayers, I can't express how much we feel them. I will continue to update you.

God's Easter Blessing to All!

A change in our plans or accepting Gods?

2007-03-29T09:23:00.000-06:00

Hello All.

Well I know most of you haven't heard but we never boarded the plane to Germany on Tuesday. Yes some of you are surprised after hearing our decision to go. I'll try my best to give you an idea of what has taken place over the last few days, everyone reading this must feel like a yo-yo and it gives you a small glimpse at what our emotions have been over the last almost month now.

Kev and I have believed that from day one God had complete control in both our lives and the life of our child. We've spent time in prayer seeking Gods will, praying for direction, and mostly praying for healing (both emotionally and physically). Where doors have closed others have open, and each step of this journey we tried our hardest to open our hearts to the way our Lord would choose us to go. This has not been easy, as God works in mysterious and wondrous ways.

We had decided not to go on Friday last week, the financial impact of this trip was so overwhelming and unknown, we couldn't risk everything for possibly nothing. With no guarantee of any sort, not even helping our child, we felt trapped. Neither Kev nor I slept on Friday night, and both got up very early Saturday. After a tearful discussion over breakfast, we both felt so unsure of our choice. Mostly we felt that we were taking control by not allowing God to work out the financial aspects. So in a step of faith we booked our trip, allowing God the control and trusting in His plan (whatever that may be). We prayed hard that God would provide a clear indication about this if we were not following his path.

On Monday Dr. Hoffmann (my ObGyn here in Fort Mac) that has supported us from the beginning in fetal surgery call us in to talk with her. Only 14 hours before our flight she told us not to go. Just like that "do not go". After she had reviewed the fee's assessment she believed that we were risking financially investing everything we had for no guarantee's, and giving up what we will need to invest in this child's future, either way. Being from Europe herself, she felt the fees were way too high for any procedure, let alone an experimental procedure.

Have you ever felt God speaking to you?

So our biggest supporter no longer wanted us going. And not the kind of "I don't really think you should go", but a loud "do not go". We had prayed God would be clear so could we deny this? So we laid down our wants and felt it was time to let go of this dream. You see I aways hoped in the back of my mind that this would "fix" my baby. Make him whole, make him perfect.

Perfection is in the eye of the beholder.

I feel like Robert Frost's poem (on the side of this blog). Two paths lying before me. One holds the dream of a "normal" life. The other is hard, unknown, scary, unclear, undefined, and long. How does a person let go of their dreams and step out in faith on a path with so many unknowns? They don't. Only God's supportive shoulder, leaned on in faith will get one through that trail, or this trial. And like Robert Frost, we take the one least travelled hoping, praying that will make all the difference.

My baby is perfect.

Made in the image of God, knit together by Him in my womb. Created to glorify our Lord.

Both Kev and I have had moments of tears over this choice, it leaves us feeling like we can't do anything to help him. It leaves us so helpless. We will spend the next three months knowing that medically our child could loose his leg function, where today his kicks me endlessly. It breaks our hearts, brings me tears. But somewhere in all this is a plan. One created by the creator, unclear to us we're allowing Him control. We can never tell you how much each prayer, email, phone call has meant. One is only as strong as those that support him. We are so blessed with you friends and family. Thank you seems so little, so insignificant. But we say it from the depths of our hearts.

Thank you.

Plans

2007-03-25T10:32:00.000-06:00

We had the best sleep last night, finally. Peace is hard to find, but we both woke up nervous but excited and feeling directed by the Lord. I did some more "surfing" on the web, reading stories of other families going through fetal surgery. It was up lifting and confirming to the choice we've made. At some point we've had to step out in faith (kind of like Indiana Jones), trusting the details to God.

One provision God has provided us is Glen Tully, he works on relocation of patients (ie. medevac), he's been such a wealth of knowledge and direction. Please pray God would continue to open the right doors for him and us. Thanks to Judy Eshenko for the contact, your fabulous.

We're packing and preparing today, a quick lunch and prayer time with some friends. My mom and sister are coming up to "hang out" for the couple of days. It will be great to see them. We're so thankful for Kev's brothers and how they are willing and able to take over things for Kev while were gone so the business doesn't suffer.

A quick shout out to Nadine for the thank-you cards your making, one less thing for me to do. I pray Gods blessing will shower you with your dreams. And Christine thanks for the hours of coffee and chats that have held me over these last few weeks, you are a gift from God.

John 9 talks about a blind man from birth. The followers of Christ were asking Him "who's sin caused this mans blindness? Was it his or his parents?" Jesus replied, "neither, this was so the Lord would be glorified". Our prayer is that our son would be just as the blind man.

A tool to glorify the Lord.

And we're off...

2007-03-24T16:40:00.000-06:00

We have spent the last few days in deep prayer and discussion regarding the future of our unborn child. There is nothing harder that trying to make a choice that is the best for him. While only God understands the plans for his future, we struggle to find that path under His direction.

We have made a choice.

We will be leaving to Germany on Tuesday, save any complications. I wavered even yesterday afternoon over this choice, knowing that we will probably have a child born almost 3 months premature. Some of the factors that helped us feel Gods direction...I prayed that if God wanted us to do this our neurosurgeon would be willing to help us by preparing a team for our arrival home. He is more than willing. I prayed that there would be a way for us to come home after the procedure and before delivery. Dr. Kohl (from Germany) called and told us that if there were no complications we could travel home 7-10 days post surgery, the only thing we're still praying on is the method of flying home. Alberta Health and Wellness doesn't think they would cover the medevac cost (approx $60,000), at this point we can't fly commercially.... PRAY HARD!!!
The only thing that has started to make us doubt our choice was the financial costs, but in the end we don't feel we can put a price on what's best for our child.

So we've been getting many calls, letters, and emails asking what people can do to help. We love each of you and continue to thank God for your support.

Ways to help:

Pray, before anything this is the most powerful gift.

We have set up a trust (sorry no tax receipts), as I mentioned in an earlier note what money we don't require will be going to help support spina bifida research and hopefully the founding of a facility in Alberta to start fetoscopic procedures.... the account is through CIBC transit/account # 00049 / 58-04930. Any donations would be wonderful.

I feel we will never be able to truly express our thanks to everyone for their love, prayers and support. May the blessings you have given us be reflected in your own life.

I'll keep you posted on the progress and dates.

An update.

2007-03-21T11:53:00.000-06:00

So we're back home after more doctors and specialists. Our meeting on Monday was with a pediatric neurosurgeon in Edmonton, Dr. Keith Aronyk. He is an amazing man that was very encouraging about our situation. One of his first comments was that we've already made the hardest choice, to continue with the pregnancy. Speaking with him has defiantly given us more understanding of the standard treatment options. While he doesn't feel that the research is conclusive enough of the experimental surgery he is willing to back us 100% understanding that as parents we have to make a choice that gives us the most peace.

Peace is hard to find, it lurks behind doors, around corners, and in odd places.

But we're still praying hard that God would give us a clear picture of His direction, and with that peace. Please continue to pray with us.

A final decision needs to be made today or tomorrow.

We love and thank each of you for your words of encouragement. They have been sunshine on our heart. You don't realize how many people care about you until your in a situation where they have the chance to show it, it is very amazing. We are forever thankful of the blessing each of you are from God.

News...

2007-03-17T22:38:00.000-06:00

So on Friday we found out that Calgary will not allow us to go ahead with the surgery. I'm struggling with God's direction in the mist of our distress. One day I feel things are pointing towards this experimental surgery, the next not. For the last two weeks my brain has been in overdrive and I'm worried it's going to go into "auto decomp idle" or neutral.

We've been praying that God would open and close doors. (Please continue to pray with us)

A close friend gave me the name of a lady in Edmonton at the Children's Hospital, she put me in contact with the chief physician that deals with spina bifida and pediatric neurosurgery. I spoke with him and it turns out Kev and I already had an appointment booked with him for Monday. So we're hoping to find some guidance with this at that time, keep it in your prayers.

We're feeling burnt out, but continue to renew our strength in the Lord. "It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness. " (Lam 3:22-23)

He said "Let there be light... and there was light"

2007-03-15T11:39:00.000-06:00

The last two days have brought a little hope into our lives.

The "big wigs" in Calgary have agreed to hear our request at a meeting tomorrow. This involves coming up with a bunch of paper work, funds and support from different people and associations. So far all is almost in order. If things don't work out for Calgary (which is our doctors first choice) the chief physician here in Fort McMurray has okay us to use this hospital. It's been amazing how he agreed to back us 100% in our choice.

I had another ultrasound yesterday and things remain stable. No changes from the previous, although our little man has gain 2 ounces, he's now 13oz.

I'm feeling hopeful. Kev and I were talking and praying last night about how we want God to direct us through the opening and closing of doors. It seems that doors are opening, we now just have to trust that He will do the rest.

Many people have been dropping us emails, they are all encouraging. Please continue to pray with us. Also I've been getting may questions about if people can financially help. We will have to financially support the physicians coming from Germany, so today a trust is being set up. It will already have enough in it to cover our costs, but both Kev and I would like to continue to support research into spina bifida over the next years. When the large trial from the USA is published (within 2 years) if the results are as promising as they appear Canadian physicians will be wanting to set up clinics to offer this treatment. We would like to continue to raise support for this type of centre when the time comes. If you feel led to contribute to our baby's trust, that is where money will be used after our expenses and a donation to Dr. Kohl's research in Germany. I'll post the information later today.

Prayer is the most powerful form of support, please give this before anything else. Only under the hand of the Great Physician will research progress.

Our Love,
Melody, Kev and the baby.

Hurry up and Wait...

2007-03-13T10:43:00.000-06:00

Not much change from yesterday. We're still waiting of some of the fetal-medicine heads in Calgary to see if they'll allow us the procedure. If not we'll try for Toronto, and then to Germany. Dr. Kohl (the fetal surgeon from Germany) remains in good spirits from his phone calls and emails. He's diligent at responding to my questions, which are tedious at times, never seeming impatient.

I was supposed to have a repeat ultrasound yesterday but Ft Mac was busy like always so I'm now booked in for Wen. I long for the chance to watch our little baby on the monitor. He weighted 11oz on March 6th, so I want to see how much he's grown.

Arrangements

2007-03-12T11:04:00.000-06:00

We have been working hard over the last week to secure the best chance for the future. After researching out our options we feel led that this surgery is the direction that God is pointing us. Doors remain open.

Were in the process of locating a spot that will allow us the procedure. The political tape is so thick, I sometimes feel I'm sinking. Our physician here in town is amazing, she's done everything she can think of to get things rolling. In the end if Canadians aren't willing to let us do this here we will be going to Germany. We even lost one precious hour Saturday night! I guess the whole Provence did.

My affect is getting brighter each day. I know there are going to be more hurdle and bumps than a Saskatchewan farm road, but I believe God's hand is at work. The baby has given me a new feeling of purpose. Kevin remains our forever optimist, I'm so thankful to God for him.

My mom (Debbie) is starting some looking into fundraising, people want to help so it would be nice to give them a way. So many people have shown their love an support for us.

The baby was mad at me on Friday. I'm almost sure of this because he kicked me all night long. I think it's probably related to the ultrasound on Friday, our doctor spent an hour chasing him around my womb. He's already like his father, unable to sit still for a minute. We laughed about it.

I wouldn't trade that moment, or my child for the world.

The sun shone so brightly this weekend...

A New Day

2007-03-08T22:35:00.000-07:00

There is light shining in the distance.

We had a good sleep. Something I didn't think was possible. Before bed Kev found a lead on a physician from Germany, that is doing a similar procedure to the Americans. This is a far chance but I emailed him before we retired for the night.

He's already emailed back. Yes he does the surgery, he's already spoken with my doctor and he's will to come to Canada to perform the procedure if we can make all the necessary arrangements. Time is now the enemy. It would need to be done before 23 weeks. I'm 19 weeks tomorrow. Results are promising, it may give my child the chance to walk...

... he's kicking me, I stop ignoring him. Mommy's going to do her best, hold on. I didn't mean to not want you yesterday, my heart was just broken. I love you little one.

I've spent the last 18 weeks falling in love with what I wanted, today I start loving what God has given me. It will take time, but a much deeper love will be on the other side. I already feel that.

Kev is so excited. It's like God has given us an angel. Now to make the arrangements. So much to do so little time.

Nothing in all the grief classes us nurses take prepares one for grief. I feel sorry for each person I've empathized with going through a similar situation. I've through I could understand someones pain but reality is, it's so personal, I feel only Kev can share this with me. I know people are praying for us, we feel it today.

The nightmare is over, now it's just reality.

As I Walk Through The Valley

2007-03-07T22:00:00.000-07:00

This is by far the worst day of my life. The things I'm going to share are not stuff I'm proud of, but I hope they can help someone in their desperate moment, I pray that God will use them.

I haven't gotten out of bed. I want to but it's like I'm waiting to wake up from this horrible nightmare. I pinch myself, but all I feel is numb.

I spoke to one of the doctors from the USA involved in this large study on in utero surgery that is to be published in the next few years. Result are "very promising" and "ground breaking" but he's sorry to tell me because I'm not an American citizen I can't get in.

My last spark of hope fizzles out.

It's dark, so cold. I feel empty. My baby kicks me but I ignore him (yes it's a little boy).

I don't want him.
Even as I write those words I hate myself. What kind of mother doesn't want her own child? But being a nurse I know the reality of raising a child that could have major medical problems. I don't know if I am strong enough for that, I don't know if I can give up myself like that. I'm so selfish. I would rather my child sit beside our Heavenly Father in glory, than experience the pain that his life might bring.
Termination.
This little voice keeps whispering in my ear, "you have the right". The right to kill my baby?

Kevin remains my sanity, my rock. He spends all day at my side attending to my declining mental state. Holding my hand, telling me there's hope.

Hope?.... all I see is desert.

The computer hasn't left Kev's hand. He's looking so hard for someone, something that can help us. Please God show us your meaning in all this pain?

D-Day

2007-03-06T22:00:00.000-07:00

So the results are in... my baby has spina bifida (myleomeningocele). For those that don't know what that is look at this website: http://www.marchofdimes.com/pnhec/4439_1224.asp.

We're devastated. No parent plans to have a sick child. The prognosis is blurry (mostly because I have to see it through waterfalls of tears). The specialist tells us we have a few weeks to choose it we want to terminate the pregnancy. While he goes on to talk about how this is a medically justifiable reason to choose abortion all I can hear is "kill your child". As far as choices for the future, carry out the pregnancy and seek surgical intervention post delivery. I question him about in utero surgeries taking place in the states. He says not to get our hopes up, but agrees to give us the names and numbers of a few physicians.

I don't understand. Why didn't God answer our cries for healing? But in the back of my mind I keep thinking about these experimental surgeries, is this the healing God will provide?

I cry the whole 4 hours home. Kev is so wonderful, strong and supportive. But he's hurting to.

The future is so blurry.

Where is God in all this?
Melody

The Power of Prayer

2007-03-04T21:51:00.000-07:00

What an amazing experience.

While I don't feel the need to share details I want to encourage those that are needing God's hand in their lives to seek and you will find. We feel that by following God's commands we have been enriched with faith.

A thought from a study I did in Bible School:

Psalm 42:5 states "What are you so downcast, O my soul? What so disturbed within me? Put your hope in God, for I will yet praise hi, my Saviour.." (NIV). The word hope has a much deeper meaning than our English, in the Hebrew root. The word is Yâchal, which is a patient, loving and trusting hope, not the excited and expectant hope. This is the kind of hope we long for, Yâchal, to wait in hope for the Lord.

Anointing and Prayer

2007-03-03T08:00:00.000-07:00

Kev and I decided to drive to Banff for the weekend before our test. We've been doing lots of soul searching and James 5:14 talks about prayer and anointing for the sick. The whole chapter focus is on "Suffering and Patience" both things we need lots of right now. More importantly we believe God has the power to heal.

James 5:14 says "Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up."

So after talking with Norm (our pastor in Banff) we want to seek God's will for our child and meet with the elders. Its scary and totally out of our comfort zone. But as parents we want to do absolutely everything to give our child the best start.

Pray with us.

Bad News

2007-02-20T09:05:00.000-07:00

We got the results of our maternal serum screen (also known as a triple or quad screen) today. The news isn't good.

The screen measures levels of a protein in maternal blood, alpha-fetoprotein (AFP). This protein is produced my the baby and levels cross the placenta into the mom's blood. So by measuring the difference in levels it can be an indicator of a potential problem. Just because a test comes back abnormal doesn't mean there is something wrong, it just shows there is a high risk for the problem. The test predicts one of two things.
1. If AFP levels are abnormally low it can indicate genetic chromesome disorders, such as Down's Syndrome.
2. If AFP levels are abnormally high it can indicate a neuro tube defect.
This level is compared to risk factors and other hormones before results are made, the abnormal combination of factors is what increases the risk. There's a good website that explains this in more detail for those interested: http://www.marchofdimes.com/professionals/14332_1166.asp

So back to us...
My AFP levels were "exceptionally high" putting me in the highest risk category because of how low my other risk factors are (age, obesity, diabetes and more). This is devistating news. What if there is a problem with my child? Every parents worst nightmare. On top of this the soonest we can get in to see the specialist in Edmonton is two weeks from now. This is going to be the longest two weeks of our life. For more information on spina bifida see: http://www.marchofdimes.com/pnhec/4439_1224.asp

In constant prayer,
Mel and Kev

Ultrasounds... so cool.

2007-01-25T18:55:00.000-07:00

Today we had our first ultrasound. Everything looks good, very busy child. The doctor kept saying how she could believe how much it was moving. We've opted not to find out the sex. We're due July 25th which is right between mine and my dad's birthdays!

I've been feeling mostly good, with a little nausea. Nothing major. We just got back from Vietnam and China, a month flew by. It's good to be home and safe.

We feel blessed that God would give us the chance to be parents, what a great responsibility!

We love you all,

Melody and Kevin

Exciting News

2006-12-25T08:55:00.000-07:00

We're Expecting!

For those of you that hadn't heard we announced our news at Christmas time to our parents. Everyone is thrilled. Our tentative due date is the very end of July, but that can change. We have our first ultrasound after our vacation in January.

So far I've been feeling good. VERY tired, I can't believe how much energy it takes to make a baby. Also a little nausea, but no puking (yet). Merry Christmas to All!

Melody and Kevin