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...

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...

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.

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

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

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.

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

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

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

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

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

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

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

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

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

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!

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.