"He shall feed his flock like a shepherd: he shall gather the lambs with his arm,
and carry them close to his heart, and shall gently lead those that are with young." Isaiah 40:11

Monday, May 31, 2010

Day 9 and 10

From early on in our journey, it was a dream of mine to be able to share Rachel with our church family. I wanted so much for her to live long enough for this and it happened...we took Rachel to church yesterday! As we drove to church, with me cradling Rachel's little head in the back seat, I felt so incredibly thankful to God. Someday I want to write a list of all the ways that God has provided for us along the way. It will be a long one! I said something like this in the sharing time. I hoped that our friends would not pity us (and shy away from us) but feel our joy as well, our thankfulness for having the chance to know Rachel. It was so wonderful to see these people I care about holding and enjoying our little girl.

...Then Sunday afternoon happened...It didn't take much to topple me over. Just some chest pain. Every deep breath hurt. I was grumpy with Dave and the kids. Everything felt wrong. I didn't feel very thankful - I felt agitated and anxious. Sure, I will enjoy and treasure the time we have with Rachel. But after that? After that, my arms will still be empty. God I feel like a fake. I tell people that I feel blessed to have been given Rachel but today I'm just a hurting mother trying to make sense of this.

By Monday afternoon the physical pain had really increased. I talked to my Doctor and she suggested that I go over to Emergency to rule out a blood clot (because I had a c-section) so I did. I spent four hours there and no blood clots. Perhaps a muscle spasm or gas.. But as I stood waiting in the line for triage, all of a sudden I started crying..the kind where I didn't know if I could stop. I hadn't been away from Rachel much before today and the thought of what life will be like after she's gone, suddenly loomed before me. But as I stood crying in that line, a kind grandmotherly woman listened to me share about Rachel and I was reminded again that so often the people I have admired the most, are people who have gone through suffering. Thank-you God for sending this kind stranger.

I know there will be more of this to come - both times of praise - and of raw honest grief. Did you know that Job, when tragedy hit, tore his robe in grief and worshipped at the same time? This really surprised me because I don't think I would respond the way he did. God, help me to stay open to you even when my heart is fighting to close in on itself.

Saturday, May 29, 2010

8 Days Old

We took Rachel home again! This time we stayed for lunch and the kids and I had naps. Dave had even thought of cutting the grass except that winter has returned to Calgary....it feels good to do some "normal" things again. After all the wondering about when she would die, it is wonderful to be able to do life with Rachel. I'm glad that I can experience being a mother to three! Rachel is still stable, content. She eats, then sleeps. When she shows that she's hungry, she cries. Sometimes she tires herself out asking for milk and once it's ready, she's asleep again. She often likes to sleep with both fists curled up under her chin. She loves her special soother. I still can't get over how tiny she is....

Abigail has really begun to show signs of jealousy. This is another of the many things that I didn't think about while pregnant. I was preparing for Rachel's death, not her life. We even bought another package of preemie diapers today!!! When I bought the first package, I wondered how many we would use. Thank-you God for this gift of time with her!

THANK-YOU to all of you that have sent me emails or commented on the blog lately. I'm sorry that I have not been able to respond. I hope you are reading this because I want you to know that I read them all and they are a huge encouragement to me!!

I added some more pics to the slide show - and yes, Val I added the picture of the white dress the nurse hand stitched for her!

Friday, May 28, 2010

One Week Old

Not much new to report...Rachel was weighed this afternoon. But I was taking a nap at the time and Dave doesn't remember how much she weighed:) He says something just above 4 pounds so she's lost some which is normal. She's still drinking enough milk to stay hydrated which is good.

Rachel is doing much better than we thought she would be, even from a few days ago. So much so, that we are considering the possibility of taking her home! (We are welcome to return here when we need) However we've decided not to think about it this weekend and then revisit the question next week. Her heart appears to be compensating amazingly well despite all the abnormalities. We've passed the one week mark today!! Her life will still be short, yet it looks like we will have much more time with her than we thought.

We are so spoiled here. Meals made for us, our rooms cleaned every day, someone is reading the kids stories right now, the nurses take care of Rachel all night for us! It has been a haven of sorts..and going home will hold some challenges. But we will take it a day at a time...

We've been amazed at how many of the nurses, doctors, and various other care personel share our faith!! They have prayed with us and given hugs just when we needed them. Thank-you God for these beautiful, faithful people.

Thursday, May 27, 2010

Day 6

Today has been a wonderfully quiet day - our first! We miss our family but we are enjoying Rachel! She is drinking about 15 mls every two hours - The Doctor is happy with this amount. She said to Dave that she likes to see babies drink 8mls an hour to keep hydrated. She takes her time with her bottle and sleeps alot.

Rachel is so well loved!! A nurse here has hand stitched a little white satin dress for her!! It looks like a little doll's dress....It's so beautiful. She is rarely ever put down - always in someone's arms....
Today I sang "Jesus loves me" to her...and cried...I don't know the words to describe how i'm feeling right now...maybe i can finish this later.

i'm off to take my turn to hold her.

Jesus loves me! He will stay,
Close beside me all the way;
He's prepared a home for me,
And some day His face I'll see.
Yes, Jesus loves me!
Yes, Jesus loves me!
Yes, Jesus loves me!
The Bible tells me so.

Tuesday, May 25, 2010

Day Five

Hello dear friends! Thank-you so much for praying for us - we are doing well! Two days ago we were giving Rachel glucose water with a syringe - drops at a time to keep her hydrated. We wondered if her swallowing reflex wasn't working. But in the last few days we have seen a wonderful thing - she is now using a special bottle to drink only breast milk. Her intake has really increased and even though it is still much less than a healthy baby would drink, we absolutely love to see her chug this down. It is a strange feeling - this enjoyment of seeing her improve - and also trying to making sense of the knowledge that harder days are ahead. It is hard to believe sometimes that there is so much wrong with her body...We are so amazed by her.

Haberman Nipple
Because things were going well, we took Rachel home for a short visit today!! (and to pick up some things) We gave her a tour of our house. Ethan and Abigail showed her their bedroom. They are getting to know and love their baby sister. (and they are so proud of her) While at the Hospital one of my favorite memories will be of Ethan and Abigail helping to push Rachel to the nursery for her first bath. Ethan told everyone on the way that he had a new baby sister. oh my heart...it swells and breaks at once. These are such bittersweet days. The Flames Rotary Hospice is an incredible place and the kids love it here! So much thought has gone into it - and I really do want to tell you more about it someday! Lots of beautiful spaces, a Library, sun room, play room, Kids movies on a Big screen TV, Chefs that prepare marvelous food for us...This afternoon the kids did finger painting with a play therapist. We are so grateful for a place where good memories will be created for them (and us) even as we suffer loss. This place is only two months old - if Rachel had been born earlier we would not have been here.

First Visit Home with Rachel

Our family has gradually left to go home. We have one more day with our moms and Dave's sisters. Our moms are ready to return when things become more difficult here. I feel torn (as they do too) - we will miss their support but it will be good for us to be just the 5 of us too. Five of us....it has just begun to hit me that we are now the parents of three children. And we always will be even though one of us will go ahead to be with Jesus. These will be Rachel's better days and we are focusing on enjoying her now. We are taking lots of pictures and videos..I can't seem to be able to copy them into this post for some reason. But I will try again soon to add a few here.

Monday, May 24, 2010

Day Four

We just gave her some breast milk in a syringe and so far she seems to be taking it well!! We're alternating this with the glucose water. We have heard babies crying all the time. This and so many other reminders are all around us of what life could be and is not. It feels so good and right as a mother to be able to do this one thing for her.

just another note - Rachel is so loved by the nurses here!!! During the last two nights we have had a good amount of rest while she is passed around. Everyone wants to hold our little girl. During a stretch of 4 hours tonight, she wasn't in her bed one time!

We're looking forward to moving to the Hospice later and to being together as a family.

Sunday, May 23, 2010

Day Three

She is so beautiful...she has facial expressions like her brother Ethan, she has a blue vein between her eyes like Abigail, lots of dark hair, perfect little hands and feet...and each hour we get closer to saying good-bye, we fall more in love with her...she's opened her eyes for us several times today...here's a picture of one of those rare moments. We seize those moments, treasure them in a way we didn't (and couldn't) with our first two.

For the most part, she is very relaxed and she has color in her face. We can almost forget. Things were different from the start, she wasn't able to nurse and she was having some issues with mucus but this morning reality hit for us. We have had to suction mucus from her passageways much more often today so that she can breathe and is comfortable. This is really scary and we are glad to be in a place where we have so much support. (this is related to her condition and not bc she is a c/section babe) We have also stopped trying to feed her formula and have switched to giving her a little glucose water instead, a bit at a time so see if that will help with the mucus. The nursery staff have modified a soother just for her and hopefully that will help her work the mucus down (her swallowing reflex doesn't seem to be working). It is a natural instinct to want to feed our daughter but right now the aim is comfort. Because of the events of today, our Palliative Care Doctor feels that our time with her will be shorter than what we were told when she was first born.

As for me (kendra), recovery has gone really well! I am so thankful for that! We have also been blessed with amazing nurses, doctors, etc...there's so much i want to write but there will be time one day for all of that...thank-you for praying.

The Next Stage

Dear Friends,
What a couple of days it has been! Full of blessing, full of difficulty, full of tears. Tomorrow we are being transitioned from Foothills Hospital to an incredible facility for families with terminally ill children - the Rotary/Flames House Pediatric Hospice. We’ll have room for our other kids to live there with us, meals will be made for us, and we expect to spend the rest of Rachel’s days there together as a family.

It means so much to us to know that you also want to meet Rachel and know her. We wish we could have more time and opportunity to share her. However, we won’t be able to share her with most of you this way because our time with her will be short and we need to focus on being together as a family during the remaining days, and the Hospice also restricts the number of visitors allowed. In the meantime, just channel your love into prayer for her and us. We will continue to post updates as we are able. We appreciate all of you so much!

Friday, May 21, 2010

Arrival with Great Joy!

I am a guest blogger for Kendra.  I'm Val, Dave's sister and proud Auntie of Ethan, Abigail, and Rachel.

We have been preparing for this day for quite a few months now.  Finally all the the tests are completed, the wait time is over, and surgery is complete.  Family has travelled to be here for this special day.  We had lots of unanswered questions about what the day would bring.  What would Rachel present like?  Would she take a breath?  Would her heart beat?  Could we love her and hold her and watch her facial expressions?

We are so thankful for how the day has played out.  The C-section was booked for 1pm today.  Little Rachel was born a tiny 4 pounds and 12 ounces.  She breathed and cried.  Not a strong and lusty cry, but a cry none-the-less.  She turned pink and was given to her loving parents.

Rachel has a good amount of dark colored hair.  Her eyelashes are very long.  She sticks her tongue out a lot.  Ethan introduced himself "Hi!  My name is Ethan!" and wanted to tickle her.  Abigail is a very proud big sister.

The specialist came in to do an Echocardiogram.  Of the multiple issues that Rachel Amariah has, her cardiac anomalies determine the length of her life.  Things post birth are very much what was seen before birth with the addition of one more cardiac problem.  Her circulatory system is rather amazing.  Her little body has figured out how to compensate for some of her problems by creating vessels not seen in "regular" babies.  

Post birth the pressure in the lungs of a baby is quite high.  That pressure will drop in the next few days and as that happens Rachel's heart will begin to fail.  Her color will change and her breathing will become more rapid.  We expect to be able to enjoy her life for 2-4 weeks.  The next few days will tell us more.  The specialist says that she will likely experience no pain as her condition changes.  This is a big blessing!

Kendra is doing well post-op.  David is spending the night with them at the hospital while the other kids are with their Grandparents.  Kendra and Rachel will spend the next few days in the hospital and then decide whether to go home or to a hospice setting.  In the hospice food is provided and the family can just focus on being together and making good memories.

We are so thankful for all of your prayers today and request that you continue to lift us up.  We are relieved that things went so well and that we have had the chance to create memories with this beautiful baby.  Things will change.  Her heart will fail and Rachel will die.  The grief is different for all of us and most painful for her parents.

Welcome here Rachel Amariah Funk.  You are so loved!  Fearfully and wonderfully made....

Today is Rachel's Birthday

Today Rachel arrives. Beyond that, we don’t know what will happen nor how things will be. There is room for much trepidation. There is room for much fear.

But we go into today with the whole armor of God. Our struggle is not against flesh and flood, but against the rulers, against the authorities, against the cosmic powers of this present darkness, against the spiritual forces of evil in the heavenly places, and today these have one objective; to rob us of our faith in our commander-in-chief so that we are overwhelmed with fear and despair. This is the battle, so we take up the whole armor of God so that we will be able to withstand on this day, and having done everything, to stand firm. We stand, therefore, having fastened the belt of truth around our waists, having put on the breastplate of righteousness, and on our feet the readiness that comes from the gospel of peace. We stand, with shield of faith and helmet of salvation and sword of the Spirit.

We go into today with the Body of Christ surrounding us and praying for us. We go into today with Jesus interceding for us at the right hand of the Father. We go into today with the Spirit interceding for us with groans that words cannot express. We go into today with the Maker of the Universe as our shepherd – Rachel’s, Kendra’s, David’s. Yea, though we walk through the valley of the shadow of death, we will fear no evil, for thou art with us; thy rod and thy staff, they comfort us.
David and Kendra and Rachel

Wednesday, May 19, 2010

It's Time

Today I went to get blood work done in preparation for the c-section on Friday.  Then I checked out the Labor and Delivery floor of the Peter Lawheed hospital, just in case labor comes early.  I don't want a repeat of my last experience - wandering the halls in the throes of hard labor with Abigail, following an equally lost husband!! It struck me today that this is probably the last day I need to respond to a stranger's comments and questions about my pregnancy.  I'm tired of them.  I don't know how to respond. What do I say when my chiro's receptionist tells me how excited she is about our baby arriving soon and that I need to bring her in to show her off?  (she's likely forgotton the info. on my file)  I just say "Thank-you".  Or when my hair dresser asks me if I have any exciting plans for the summer?  (after I tell her our baby likely won't live long)  I don't blame them for not knowing what to say - I often feel at a loss myself.  It's shocking for people to hear things like this.  Most pregnant women are looking forward with joy and anticipation to Birth. 

Sometimes (in the right situation) it has opened the door to a conversation that wouldn't otherwise happen.  Today was one of the rare times I chose to talk about Rachel.  The woman supervisor at the Lab shared that she had cancer and she had prayed and God had healed her.  She was an encouragement to me, to trust God to know Best and to enjoy the time I will have with Rachel.  So, sometimes I also wonder if I will miss being pregnant and the attention given to this little one.  One day Rachel will be a memory and not a visible presence to the world.  I think her life will still open doors in conversation but in a different way.   

One more day.  Two more sleeps.  I will treasure this time but I feel torn - i both want to hibernate and hold off what is coming - and I want to meet Rachel.  Tomorrow family is leaving Manitoba so that they can be with us on Friday....After all the waiting, it is finally time.  God give me courage!             

Friday, May 14, 2010

Teetering on the Edge

Last night I thought we had finally arrived at THE DAY - the day when we meet Rachel.  So it goes without saying that I didn't sleep much.  During the nights, I find myself teetering on the edge of sanity, which is actually quite normal for pregnant woman at the end!  Sometimes both Dave and I dream that Rachel is born...and she is perfectly healthy....or something goes terribly wrong.  David even dreamt that I had given birth to a healthy Rachel and then somehow forgot to tell him that she had been born! Wow - God, sign me up for that kind of labor!

This morning the thought came briefly to me today, "What would it be like to bring home a healthy baby girl?" and I was hit with such a powerful longing for that to be true.  God, I know you are able to heal.  You could re-arrange Rachel's heart, her brain, her body, and make her whole in an instant.  There are so many stories of you doing miracles - not just in the Bible - I believe that you still work this way today.  But I know that you work in other ways too.  You have given me such strength to face all the unknowns, strength that is so beyond me. I don't know what will happen tonight, or tomorrow.  I do know that the only way I want to face this, is with God's strength and not my own.  I'll go crazy otherwise (or just crazier in my case)

To all of you that have walked with us through the past four months, prayed for us, sent notes, made meals etc...THANK-YOU!!  We will not be able to respond to all of you (maybe not to any of you) in the coming days.  But I want you to know how deeply your care has moved us!! I have never experienced such an outpouring of care from so many people in my life!  I want you to know this because there may be times ahead when we will want our own space to be with Rachel, or to grieve - and this may seem confusing to you.  We may not respond right away when you offer help or to visit, or when you write us emails & cards - and yet we will still be so thankful for your efforts!!! They will not go un-noticed.  Thank you for your understanding.  We've never done this before - we don't know what life will be like, or how we will feel.  In many ways, this is when it all begins...We are teetering on the edge of an unknown world.  But we know who holds our Future!        

Monday, May 10, 2010

3D ultrasound pictures

Lips that look like Abigail's

Sticking out her tongue

Fist and Face

These pictures were taken at 37 weeks gestation.  I was told they probably would have been clearer if I had done them a month or two earlier.  But it wasn't too bad because there is still quite a bit more amniotic fluid than there are in 'normal' pregnancies.  We watched her stick her tongue in and out, kick her feet, and breathe! The technician pointed out that she has quite a bit of hair! She thought her nose looked like mine.   For most of the ultrasound, she was lying on her back facing up, which is good for getting pictures, but bad news for me.  This means, very likely that should I experience labor - it will be another back labor.  More confirmation that a booked c-section is a good idea! We love you baby!

Why We Chose to Carry Rachel

Five years ago today, Dave and I went to a lake near my parents's home.  We lit a candle in memory of the baby that was due to be born that day but who we never met.  May 10 is a day I will not forget.  Today, it doesn't hurt the way it did that day.  I know that God used that year of disappointment and waiting for good.  But it does remind me of another day - the day in October when I went to the Women's Hospital in Winnipeg to have a D&C done.  There was a young girl there and as I sat waiting to be called for surgery, I overheard a nurse asking her in a nearby closed office the question, "Are you sure?"  It struck me as terribly unfair - that I wanted a child so desperately and couldn't and this girl was in a desperate situation and felt she had to end her child's life.  Two women facing the same surgery with very different circumstances.  I have deep respect for people who walk with women in their journeys of decision and pain. 

Four years later, I too was given the opportunity to 'terminate my pregnancy'.  (wow, those words sound so chilling to my soul now) A way out.  Why carry a child who will die in the end anyway?  Or live for a long time with a severe syndrome and health issues?  Why put myself, my family, and a child through so much pain?  What point is there to that? And to be honest, for a time I wished I could take it.  The way ahead looked impossible.  The possibilities of how this would change our life - our plans for the future - absolutely terrified me.  Yet, I knew from the start that this option was closed to us. 

Some people have asked why we chose the way they did.  Others have secretly wondered.  I have avoided tackling this question here on my blog until now - but perhaps now is the time.   I do not want to debate the issue of abortion.  I do want to share from our experience and as you read about or observe our journey, and perhaps meet Rachel yourself, I hope that you will at least come to appreciate our reasons.  I even dare to hope that you will be able to see, along with us, the possibilities for Beauty and Hope, even in the midst of deep anguish.

Did our spiritual beliefs dictate our choice?  Yes and No.  I do believe the Bible tells me the truth when it says that God is our Creator, that all life is sacred, that He is the one who forms us in our mother's womb - we are known completely by him long before we are named by our parents.  This has shaped my view of when life begins and how we are to honor that life.  But on those first awful days, my thoughts and questions were not theologically abstract - they were intensely personal.  The question that immediately came to mind and stayed there, was this.  "How does one mourn a termination?"   

If I took things into my own hands, I would always wonder if I made the wrong choice.  I would always wonder what Rachel looked like, felt like in my arms. As a mother who already felt her moving in my womb, I knew in my heart that it would wound me deeply to know that I had ended my child's life.  I have the comfort (even with the added pain) of knowing that I did what I could for my daughter, and that her days on this earth ran their course, as they were intended.  At five months gestation, I had already formed a bond with the life growing in me, suffered morning sickness for three months, started to dream of who he/she might be.  How would I mourn (and heal) when I could never know or share Rachel with you?  I wanted her to be real in your eyes as well, as real as she was to me.

Also, if I take things into my own hands - I do not leave room for the possibility that God might heal her, or that Doctors (even with all their expertise) might be wrong.  And I do not leave room for the beauty and the good that can only come from walking through the pain.  Does this mean that I welcome suffering? NO!!! My natural inclination is to run as far away from it as possible.  But the truth is, none of us can really insulate ourselves from suffering.  I knew from that awful day, that either way I would experience deep grief for my child.  I knew that there had to be a way to face the pain and the unknowns in our future.  I know that for some of you this may sound like a foreign language but I am going to say anyway that ....The only way I know how to do this is to put my trust in Jesus, who also suffered for me.  And his suffering was not without purpose.  Because of his death, I have real life and Hope! I trust that our suffering too will not be in vain.  

Friday, May 7, 2010

Cherished from the Start..

We just received some pictures from a Maternity/Family photoshoot that we did a month ago!  I know these pictures will be so precious to us in the future.  Soon you will enter this world Rachel - we are eagerly waiting the day when we can finally hold you, kiss your face, and wrap you up in the beautiful blankets that have been waiting for you alone.  You are a cherished little girl and I know you will impact our hearts in ways we can only imagine right now...

Wednesday, May 5, 2010

Desiring Stillness

It's been hard to find time to write lately.  For months, time seemed to go by so slowly and now it seems to be flying. During the day, I am busy with Ethan and Abigail and day to day life.  At night I find myself sitting on the couch feeling Rachel move (and she moves alot) and I can't go to bed because I want to savor any time I have with her.  I feel bombarded with such a variety of thoughts throughout the day that I hardly know what to write here.  We may meet our daughter in a week!  What will that be like?  I know that I will fall in love with her!  How long will she live??? I am anxious about getting things ready, and it is something like the nesting urge, except instead of a baby room I think about a memorial service and our families' visiting plans. I am a planner and I want to be ready for every possibility.  In my own way, I am trying to take control of a situation that is so obviously out of my control.  I have to learn to be ok with many unknowns.  Many things need to be left in God's capable hands.  He knows my heart.  He knows what I ask for.  I will trust Him to decide what is best.

I am glad to see that some things I was anxious about before are falling into place.  I was especially feeling pressure about the decision about how and when Rachel should be born.  I had to make a decision that would be best for three parties - me, Rachel, and our families.  Although I always sensed freedom from our family in that regard, plans still needed to be made, time booked off work, flights booked.  But after a Dr. apointment on Monday, I felt as though many of my questions were cleared up - not all - but enough to say that we can go ahead with plans as they are!  If she does not come before May 21st, we will have a planned c-section on that day.  Also, I finally got confirmation that our siblings will be able to visit in Hospital (usually visiting policy does not allow this unless death is imminent)  Spring is a very busy time for our families, as it is Seeding time on the farm.  I am glad that my Dad now has someone working for him, which frees my mom up a little more to be out here with me.  I am so thankful that our family wants to be here with us and is making sacrifices to do so!! As I write these things, I realize how many of our needs are already being filled.      

On Sunday we were hugely blessed by our church!  An announcement was made that Dave is being given a one month compassionate leave, starting from the time of Rachel's birth.  Others will take over the pastoral needs while Dave is gone.  Afterwards, people gathered around us to pray for us and Rachel.  I was so moved by their tears and their obvious care for us.  This too was another event that God used to soothe the anxious thoughts in my heart.   

"Be still (Kendra)...Be still, and know that I am God...."

I still have so many questions.  God, help me to be still.