Wednesday, 30 November 2011

Some days are tough...

I wasn't planning on writing anything today, I was even explaining to my mom why it wasn't "worthy" of a blog entry.  Then I remembered that I had promised to be honest as I walked through this journey and felt guilty that I'd asked you to come along but was only sharing my strong days with you.  Today was not one of those days and it was a tough one.

I was laying in bed last night when the sadness started, I started to feel alone in my pain.  I tried to explain it to Shawn and although I felt like I knew why, I didn't know how to explain it to someone else without offending.  I need to be clear when I say, our friends and family have been VERY supportive and there is nothing they're doing wrong.  I just realized that when tragedy strikes it shocks people, the first time you heard about Hope it was shocking and sticks with you.  Together we carried that shock and the weight of the situation.  Over time the rest of the world has to go back to their normal lives, I've done it myself as I walk through tragedy with friends.  Life continues and nothing has changed, it's a sad story but you still have to live your lives.  I feel like the only one who can't just continue to live a normal life and it's lonely.  I have a long waiting period, another 4 months before the real journey begins.

Last night I had one dream after the next of Shawn and I meeting other families who have children with HLHS.  In most cases they were actual people that keep blogs I've read but have never met.  It was like my entire sleep was consumed with thoughts about Hope's heart and I had no way to wake up and get away from it.

Today I had a ton of love from friends; I had a friend here for lunch, dinners dropped off and a friend here for dinner.  It's not that I'm truly alone, I just feel alone in my pain.  Today was one of those days that I carried tears right on the edge of my eyes and fought to keep them back.  At times they fall without permission but I spent most of the day controlling them and saving myself from a cry headache!  My hope is that I'll wake up fresh tomorrow and ready to be strong again but for today I feel tired and like I'm not strong enough for this fight.  I would truly appreciate your prayer not only for Hope but also for us!

Tuesday, 29 November 2011

The blessings are new every morning

Many people have asked how we're doing, it sounds wrong to say great but we'd be lying to say we were terrible.  I struggle sometimes to move forward in life, I feel guilty at times when I live like nothing has changed.  I have to remind myself each day that God's peace is what brings joy into each day and that although we continue to live our lives, we never cease to pray for Hope.

I work hard at staying busy and have wonderful friends who have helped keep my calendar booked.  It's been wonderful to see Hope's name all over the city with Christmas coming.  We are constantly reminded that our little girl is coming and praying that she gets to stay for as long as possible.  We still cry at random times, tonight we were watching a documentary about lottery winners.  It seems like a safe movie to watch but we were very wrong, a scene of a family having an ultrasound made us both tear up again.  I'm learning that it's okay to cry, but that if I make it through a day without tears, that's okay too.

Each day comes with new blessings, we find joy in the smallest things these days.  I've learned to appreciate each and every gift and not let things pass unnoticed.  Thank you to everyone who has been the blessing, or brought the blessing!

Friday, 25 November 2011

Halfway to Hope.

Today marks the halfway point in our pregnancy, 20 weeks until we arrive at our due date and know that, if we have yet to deliver...the doctors will make it happen!  We look forward to holding our Hope and seeing her face for the first time.  The last few days I have started to feel numb in a way and worried that I wasn't constantly crying any longer.  As I was driving today I finally realized that I wasn't numb, I was experiencing peace.

We already feel that our little girl has so much purpose.  Her heart may be 1/2 the size it should be but her impact is so much greater in this world as a result.  She has already been a testimony of faith and hope in Jesus Christ.  Can you be proud of a child that has yet to be born?  I have a feeling she's going to be a pretty tough little girl.

Thank you everyone for your continued encouragement to our family and your prayers for Hope.  We are blessed by the support that surrounds us and we feel stronger standing with each of you around us.

We've been keeping ourselves busy by setting up a 'Big Girl' room for Sadie.  It's coming together nicely and although we have no idea when we'll move her into it, it's a wonderful distraction.  We do plan to ready the nursery for Hope before we leave for Edmonton.  It's a step of faith as we can only pray we are able to bring her home with us.  It's important for me to move forward in faith and stay as positive as possible, it's a way to protect myself from allowing doubt to consume me.

Tonight is Shawn's company Christmas party.  We're looking forward to a date night and the opportunity to sleep in tomorrow morning!  Sadie will be with her Oma and Opa and we know she'll be having a blast as they love her like crazy.  I'm sure she'll get her hands on a treat or two if she asks often enough :).

Over the next 20 weeks we'll be sure to post any information we receive from scans or appointments we have at the doctor.  It'll be a long wait but we'll make it to April before we know it!

Wednesday, 23 November 2011

She's a she and she has a name!!

We are thrilled to introduce you all to our unborn little girl, Hope Taylor Koslowski.  We received the news this morning that confirmed the first suspicion, she is a girl!

Wow, where to begin to sum up our appointment, it was 4 hours long and we will never forget to bring snacks again.  We started with a tech that did our Ultrasound/Echo on the baby's heart for about an hour.  It was long and a little boring.  She asked at one point if we were going to fall asleep as the lights were low and we were both tired after a bad night with Sadie.  When she was finished the doctors had to take a look at it so the waiting began...we waited for almost an hour!

A team of 3 doctors came into the room and said they had a few things they wanted to look at again and started the second Ultrasound/Echo.  This one was only 15 minutes and they did talk amongst themselves but they spoke in a bit of code, "yeah, I don't see that thing that we thought we saw".  Nothing we could pick up so we just sat and listened to them but didn't say anything.

When this was finished and the top of my pants was now officially soaked in the ultrasound gel, we were done with the tests.  We were lead into the consultation room to begin waiting, again.  We were there for about 20 minutes before 2 of the 3 doctors returned.  They began with the picture (a good one this time) of a regular heart and what it looked like.  Once she was finished she pulled out another sheet with a regular right side and a very miniature left side.  She explained that our baby girl does have a very small left ventricle but that it is not pumping any blood and is thought to be useless.

They officially confirmed our diagnosis of HLHS and informed us that we have a very severe case on our hands with the left side doing no work.  They asked us how we wanted to proceed and we were able to let them know that we were choosing to move forward with the surgery.  She began to walk us through the surgeries in detail, answer our questions and give us a lot more clarity.  After speaking with the doctor we are very confidently choosing to undergo the surgeries at the Children's Hospital in Edmonton.  They then began to go through some details for the rest of our pregnancy.

Shawn and I will now be seeing an OB in Calgary for the rest of our pregnancy and receiving scans every few weeks to continue to track the baby's growth.  At this point the right side of the heart looks VERY healthy and strong, no leaks or weak spots.  They will continue to look at this as it is good news for us going into the surgery with zero working parts on the left side of the heart.  The OB in Calgary will also be important if I happened to go into early labour for any reason.  Little Hope would then be airlifted to Edmonton.

We will be travelling to Edmonton at 32 weeks pregnant to meet with all the doctors we'll work with after birth.  We'll be undergoing a lot of the same tests so they can become personally familiar with our case and confidently treat our little girl.  We are going to be moving up to Edmonton at 37 weeks pregnant and have been cleared to deliver naturally!  As long as there are no complications we won't have to be C-sectioned as this is harder on the baby's lungs.  I won't be allowed to make it to my due date and will be induced if I get close.  Sadie's heart rate plummeted from the induction drug and we are praying against this.  Please join us in praying that I will go into natural and healthy labour sometime after we get to Edmonton and before 39 weeks ends.  Hope will be delivered and then taken with daddy to the children's hospital.  Once I am cleared to leave I will be allowed to go over and join them in the NICU.

After Hope is born she will be given a medication to keep the duct open that is pumping the blood to the rest of her body.  This drug can cause some breathing issues and she may need to be on a ventilator but we won' know until we get there.  The surgery will take place somewhere between day 3 and 7 of her life.  We are thrilled to have this time with her before the operation and were thrilled that she wouldn't be taken right away.  We won't be allowed to breastfeed during this time as it will be too difficult for her to eat and breath with the condition of her lungs.  I am able to pump and have them feed the milk to her through a feeding tube.  After surgery the average recovery is 4-6 weeks in hospital if there are no complications.  If Hope is in a stable non-surgical place, they will airlift her back to Calgary so that we can continue her care here and sleep in our own beds!

Hope's second surgery will take place between 4-6 months of age, this surgery is much less dangerous than the first, although it is still open heart surgery.  The third and final surgery will take place between 1-3 years of age.  It is totally based on the weight and strength of the child.  They need the child to be at least 30 pounds and will wait for that time before operating.  Besides the surgeries there will be MRI's and cardiac catheters for other testing.  This is our best case scenario with no other complications coming into play.

The first surgery has a lower percentage of surgical deaths than we first thought and are happy to hear that.  We will be most at risk until the second surgery is completed.  During this time there is a lot of risk of sudden death and other complications related to the heart defect.  This will be a time of extreme faith and trust in our God as we keep Hope in his hands.  We know that God gives us our children as a gift, but they are His no matter what.  We pray that God will bless us with a long time to love Hope but we know that if he doesn't, she gets to be with Him instead!

They did not see any signs of other defects or syndromes.  At this point it appears that we are only battling the HLHS and for that we are thankful.  Being a girl, Hope has a chance of Turners Syndrome but does not show any markers for it currently.  We have decided against and amnio and will find out only after she's born if this is something to worry about.  Please pray against this with us as well.

Other than surgeries and complicated procedures that need to be done, the rest of our care can happen in Calgary.  We are truly lucky to have a children's hospital in our city and will get a bit more time at home as a result.  We are also lucky that Edmonton is driving distance from our house (3 hours) and that we know some people who live there.

We are struggling with the fact that they can not give us a life expectancy for Hope but have told us that she will need a transplant in adult or teen life.  Her chances of ever carrying a child of her own are very slim because of the danger to her health.  These are all things that we don't enjoy hearing and mourn for the loss of her dreams already.  We pray that she is passionate about adoption and drop dead gorgeous so that any man would not be able to help but marry her, even if they couldn't have a promised future with her.

We were told that as a child she will be able to keep up with other children and run around.  Once she is a teen she will notice shortness of breath and fatigue but they strongly encourage her to exercise.  It will strengthen the right side of her heart and is not dangerous for her.  Contact sports are out because of the blood thinners she'll be on but she could play soccer like her daddy.  Maybe she'll hate sports like her mom and won't notice the inconvenience at all!  HLHS babies are found to have a slightly lower than average IQ.  Knowing this in advance we plan to have Hope in music and language studies to give her a little boost in the brain.  We are praying she'll make the honour roll anyway and be spared from learning difficulties that will frustrate her.

Please continue to pray with us for Hope and for the rest of the pregnancy.  It looks like she will carry to the end and continue to grow, for that we are thankful.  Our prayers is for an on time delivery that does not need an induction, just like in the movies!  We are hoping to be able to successfully deliver naturally, that also means my mom would be able to join us for the delivery and that is a special gift.  We are praying that she will be strong at birth, that her lungs will tolerate the medication well and that her first surgery will be successful and that she'll recover easily from it.  We are praying for peace about having to leave Sadie so often with others and not be able to love on her ourselves.  We are blessed to have so many people that we trust to watch her, that is a gift.  Most of all, we are praying that this little princess proves them all wrong and grows the left ventricle to normal size and begins pumping blood to her body herself.

Thank you for caring and for your support.  Our journey continues and we will have many different struggles and appointments so we'll continue to keep you posted.

Tuesday, 22 November 2011

The Day Before...

Less than 24 hours until we meet with the specialist, have more tests done on the baby's heart and get more information than we'll know what to do with.  Anyone who knows me well would tell you that I am extremely impatient.  Reading Ephesians is always a struggle when I come to, "love is patient".  By only the power of God I have not felt impatient waiting for this appointment at all.  By the power of prayer I actually feel a lot of peace as we prepare for tomorrow morning.  I can't help but laugh when I think of how many times I've prayed for patience, I believe God is going to give me some finally!

A second mom in Calgary came over this morning to keep me busy, play with Sadie and make me dinner!  I sit here writing while Sadie naps, my apple pie for dessert bakes and my belly is full from a wonderful lunch that she also provided.  Wow, how can God bless you with more than one fantastic mom?  We truly are blessed by the people around us.

Last night we officially named our baby and after a gender confirmation tomorrow, will allow you to pray for her (or him) by name.  We wanted Sadie's name to be a surprise but there are more miracles to announce with this second baby and her name doesn't seem like big news.

Thank you for continuing to pray for us, we'll be sure to update you at some point tomorrow after our appointment as well.  We are surviving, God is a wonderful comfort to our family and has raised up some incredible people to spoil us and make us constantly wonder, "are we that nice?"

Sunday, 20 November 2011

Support from above and beyond

It has been 4 days since we received the news of our baby's broken heart.  Reality has set in at this point and although we still have many questions, we have a general understanding that life will never be the same.

I don't know how to articulate this properly but, in a weird way, we feel blessed.  Last night I sat and read some of "Crazy Love" by Francis Chan.  Previously I found this book not to be very 'deep' and full of facts we've already heard.  My entire perspective on life has now changed and reading of God's love was like hearing it for the first time.  When I finished I sat and talked with Shawn, my heart full of so much thanks.  All my life I have wanted more of God, more passion for him, more desire for him, and more discipline to seek him.  I now have the privilege of being in a place of brokenness that requires me to not turn to Him at times, but to let Him carry me at all times.  I've finally gotten what I've always wanted, full dependence on God.  God can no longer be a part of my life but must utterly consume my life if we're going to survive this rough road.

Our friends and family have been amazing, this support is humbling to me and is also going to take some time to accept.  When I log onto our blog and see followers I don't know, get emails from strangers or hear people I've never met are praying, I am overwhelmed to say the least.  The things that used to matter are now so small in life.  I find it difficult to make meals for my family, a task I previously enjoyed.  I can't find the ambition to clean my floors and yet still find all the cheerios on my socks annoying.  Perhaps that will come in time but right now I just want to be with people, sit and read.

Many people have asked us what they can do or shared their desire to help and their uncertainty of what to do.  I like to do things myself and find it hard to accept help and especially to ask for it.  I believe this is something that is going to need some serious work in my life!  So I've decided to try and be honest, to make our lives more vulnerable and share our needs as they come up and force myself not to be ashamed of our need for help.

We need love.  The best thing you can for us right now is love on us.  To keep me busy during the day by going for coffee, hitting the grocery store, having play dates or whatever.  My thoughts are overwhelming and I truly enjoy being busy right now.  You can feel free to call but please do not be offended if we don't answer, at times I feel tired of saying the same things and can't seem to make myself pick up the phone.  Your words of encouragement and promises of prayer are a great strength.  Anyone that was around while I lived away from home will know that I love to write and receive letters...if you want to send mail I will open it with joy :).

We have been blessed by a couple of people dropping off meals.  It is a blessing beyond words to reheat something and sit down and eat.  Shawn really likes to eat good food and I feel guilty when I serve him a salami sandwich.  It is a blessing as a wife to serve him a nice meal, bless him through it and to know that I didn't even make it!  Tonight we have friends coming over with dinner to sit and eat with us, keep us busy and well fed.  This is a huge blessing, we love to spend time with you and want you to come by, don't be afraid to make us cry.

Christmas is getting closer and it's hard to think about decorating.  Sadie is getting bigger and we're planning to make a 'Big Girl' room for her.  These are all things I would normally love and although I'll still enjoy doing them, I would love to do them with company.   If this is the type of thing you enjoy, come and join me!

Most of all, please pray for us.  Feel free to share our story with anyone you know that will pray. We are not keeping our story quiet to protect our vulnerability.  We realize that the prayers of God's people is worth it and we choose to embrace the publicity of our suffering.

Thank you for your emails, your phone calls, your visits and your prayers.  We love our friends and family and are so lucky to have such a great support system.  We can only hope that you know how much we appreciate you and that no matter how consumed we are with our own situation, that we always take the time to be sure you know we care about your lives as well.  We love you all.

Friday, 18 November 2011

Our Story Begins...

On November 16th Shawn, Sadie and I headed to the ultrasound clinic for our 18 week ultrasound.  We talked about whether it would be a boy or a girl and threw around some name ideas.  We agreed to have a medical student attend the ultrasound and things got underway.  The technician began looking at the babies profile, limbs and brain.  She continually described things to the student and would show her why our baby was healthy but what the signs of a problem would look like.

The baby was in a tough position so it took a bit of time for the technician to make a guess, she's guessing it's a girl!  A little sister for Sadie to adore.  Sadie began to get a little antsy so Shawn took her out to the waiting room to play.  The technician began to look at the baby's heart and seemed to get quiet.  She had me roll onto my side in an attempt to get a better picture.  She continually looked at the heart, no longer speaking to the student or myself.  I saw her type a question mark onto the screen and something about the left side of the heart.  It was all in short form and I wasn't sure what it meant but was certain a question mark was a bad sign.  I knew the ultrasound shouldn't be taking this long and began watching the clock on the screen.  When we passed the hour mark I began to really worry and wanted Shawn back.

The technician made a joke about me needing to pee and handed me some kleenex to wipe off my belly. She told me she was going to have the doctor to come speak with us and to wait in the room.  I ran to the bathroom and then quickly out to the waiting room.  I asked Shawn to come back in with Sadie and told him I thought there was a problem.  As we began to wait I told him she was looking at the heart and it was taking too long.  He tried to reassure me and told me not to jump to conclusions.  Sadie was going crazy, we hadn't expected such a long appointment and were running out of ways to entertain her.

After what seemed like a long time, a nurse came in and brought some cookies and a sticker for Sadie.  She told us we'd be more comfortable in a room down the hall.  As we walked down the hall to the 'Consult Room' I knew things were about to get worse.  We sat down and I told Shawn again, something was wrong.  We waited for a long time for the doctor to arrive.

The doctor finally arrived, with the medical student.  She looked like she'd lost a bet and was about to enter her worst nightmare.  The doctor sat down and talked to Sadie for a second and then told us he had bad news, it was very serious and going to be tough.  He started out by drawing a heart and apologizing for his artistic abilities.  He then scratched out the entire left side of the heart and proceeded to tell us that our baby was missing the left side of her heart.  He told us that the heart would not grow or develop any further and this was not going to change.  He then began with our options...

1.  Terminate the pregnancy and make the most 'humane' decision for the baby's sake.

2.  Carry the baby to full term, deliver here in Calgary and put the baby in palliative care until, "nature took its course".  He told us it would happen quickly and the baby would not suffer.

3.  Carry the baby to full term and deliver in Edmonton at the heart centre.  He told us the baby would go for immediate open heart surgery and would continue to have another 2 surgeries before her 5th birthday.  He warned us to think about the child we already had, the time we would need to spend away from home and the emotional strain on our family.

He apologized for ruining our lives, told us we had some tough decisions to make, and that a nurse would be following him in with our first appointment at the heart specialist for next week.  Tears were already streaming down my face but I had been staying composed.  As the doctor closed the door I began to weep and stood up to fall into Shawn's arms.  We had nothing to say as we waited for the nurse to arrive.

The nurse apologized for our pain and handed us the details for our first appointment.  We picked up our things and started the long walk out of the office.  As we passed through the waiting room and I saw all the excited moms and dads waiting for the first sight of their babies, I felt jealous.

Here begins a long journey for our family.  We have chosen option 3 without a thought and are awaiting our first appointment on November 23rd.  We feel overwhelmed by the people that need to be updated and decided a blog was our best option.  As we find out details or need to vent, we'll be here.

Right now we are not doing well and have many hours of tears and struggles.  We are thankful for our family and friends, their support has been amazing.  We are fully relying on the Lord for the strength we need each day and believe that he is going to carry us through.  We're not sure why he's chosen us and feel like we're not ready but are willing.

We are asking the world to pray.  Will you join us on our knees as we ask the Lord to heal our baby's broken heart?  We are asking for a whole heart and the faith to believe it can happen.  We need the strength to trust in God's plan whether he heals her heart or has us go through the first surgery.  We need wisdom as we research the best place for the surgery and the logistics to make it happen.  Our God is all powerful and we choose to believe in His power.