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.

8 comments:

  1. Amy - you are such an incredibly strong person. Your faith in God and willingness to see both the stuggles and the blessings that are ahead of you is truly inspirational.

    Blessings to you and your family.

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  2. How could she not be drop-dead gorgeous with parents like you?
    That's not ANYONE'S concern! ;)

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  3. Thank you Amy for sharing so completely with us. I love the name Hope!! (though my guess was close)

    Even from a distance we feel very near you, Shawn and Sadie. Give them both a hug from us.

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  4. I second Sarah!
    We are doing a session on prayer with our small group and even though we all know how important prayer is I think that we forget how powerful it truly is! I pray that your faith and confidence in the Lord shines through and reaches people in need of Hope in this world through this blog! Xox

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  5. First of all, congratulations on confirming the gender. - and LOVE the name! Beautiful! Secondly, from what I understand, unless they're planning on attempting a biventricular repair at some point in time and rehabbing the nonfunctional left-ventricle, it's my understanding that it's pretty irrelevant how big or small the LV is. With Bodie, they were never even able to find any structures on the left side of the heart at all. In fact, both his cardiologist and the one who did our 2nd opinion said that was a good thing. If it's non-functioning, it's just basically a monkey on the back of the RV, forcing it to work even harder. Does that make sense? So I wouldn't worry about that making her prognosis any worse. And GREAT news that they didn't see any problems with the RV! Praise God!!!

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  6. Beautiful name for your precious little girl. Praising the Lord for every bit of good news amidst the challenges.

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  7. Hi guys,

    I look forward to hearing how things work out for you both. This is a rare condition but I am certain with the advancements in medical science and parental love things will be just fine!

    Excellent blog by the way!

    Adam Andrea (Shawn's colleague)

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