Crazy week

Well you’ll never guess where I’m writing this post from today… so I’ll tell you,  Sick Kids.

Ava and I and Jason’s mom came down yesterday for some clinic visits, but instead of going home, Ava got admitted and we are at here for at least the weekend, such a bummer.

So this crazy week for Ava seems to have all started last Sunday when my girls accidentally pulled out Ava’s ng tube just as I was going to get Ava ready for church for her dedication.  It was a bit stressful, but I got it back in, but even during her first feed with the reinserted tube,  Ava vomited up some of her milk.  That wasn’t like her, so by Tuesday after she had spilled quite a bit of her milk many times, I talked to both the Nurse Practioner here in London and in Toronto,   and we decided that her ng tube probably needed to be replaced.   So I replaced the tube and she seemed much better and that was good.  That was NG tube insertion number 1.

But the next day – Wednesday – when I gave her her daily dose of aspirin via her ng tube,  it got stuck in the ng tube and blocked it completely!!!  Oh man!  I’ve never had that happen before, but the tube I had put in the day before was a different ng tube than the kind we’ve always used from Sick Kids, and it had smaller holes and I guess I didn’t dissolve the aspirin well enough.   So after calling in some reinforcement, we replaced her tube again.    That was NG tube Insertion number 2.

But then her vomiting increased again and so once again I thought it may have been the tube, so Thursday night before her 11:00 pm feed, I inserted it once again.  Tube Insertion number 3.  And at that point I seriously thought that if we weren’t going to be going to Toronto the next day I would bring her to emerg in London, because the vomiting had been going on too long.

So Friday – we left for Toronto early and Ava had a GI consult for a G-Tube and they did say that she was a candidate, but in all likely hood she wouldn’t have the surgery until after her Glenn.  But during the appointment, Ava – who was sleeping in her stroller – didn’t look so good as she was breathing fast and her heart was beating faster too.   The nurse ran to get the Dr and I picked Ava up and she calmed down and was better by the time the nurse came back with the dr, so we finished the appointment and that was that.

Then Ava had her echo at 1:30 pm and after that we saw the Nurse practioner with the Single Ventricle Clinic.  But Ava was up to her old tricks and she was breathing fast again and her heart rate was fast and when the Cardiologist came in he said he wasn’t comfortable sending her home like this and wanted to admit her.

So she was admitted and the poor turkey had to get a chest x-ray to make sure nothing was brewing in her lungs and so before that, we once again inserted another ng tube – a Sick Kids one this time.  Tube insertion number 4.   But that tube just seemed to want to come out, so we inserted it again.  Tube insertion number 5.  But that tube had a hole in it, so had to do it again,  tube insertion number 6.  But the next tube, the wire didn’t want to come out, so that ng tube leaked from where it had scrunched up where the wire got suck.   So at 11:00 pm, we once again inserted another ng tube down my daughter’s nostrils.   Tube insertion number 7. Poor poor baby.

So here we are.   The plan for today is to give her more lasix and slow down her feeds to see if that takes care of the vomiting and the fast heart rate and breathing.   By Monday we should see if that’s enough.  If it’s not, it just might be the source of all Ava’s problems could be her heart, as her echo showed decrease function and more leaking from the valves.  Not good.  So if they are still worried about her heart, we will probably stay longer.

So please pray that it’s just a blimp that can be remedied with meds and rest.   God had a plan for Ava and for us, so even though here in the hospital is not where I want to be, I can be here in faith and trust.

God is good.  All the time.   I just never want to insert another ng tube into Ava’s nostrils ever again!

Amen.

 

There and back

So yesterday we made the trek to Toronto again.  Except this time it was Ava and I and Jason’s sister Lija (Lija – the cool Latvian way to spell ‘Leah’ ) and we left Jason and the kids at home.  It worked out better that way so Jason could be in town for Sarah.  Plus, Jason is the morning king.  He wakes up at 6 am every day to give Ava her 6:00 am feed, he then gets the kids out of bed,  feeds them, packs their lunches and walks them to the school bus.  Every day.  He rocks.

Maybe someday I will venture to Toronto alone with Ava, but at this point I’m too tired to drive myself, plus I  enjoy the company and the help of having another person there with me.   So thank you Lija for taking the time off of work and taking us!  And we had a great day together and Lija was very good about me dragging her all over the hospital and talking to what seemed like a million people, she is a very patient person.

And the good news is that the Toronto team was very happy with Ava.  Every time they see her in clinic they remark that they’ve never seen her looking so good and it makes me so happy and grateful to God for His goodness.  And I’m happy to report she’s gaining weight and growing, which is fabulous.  She’s only in the 3rd percentile for weight, but for her height she right around the 15th percentile.   It’s a little surprising that she is a good height considering she has Turner’s, but we’ll gladly take it!    And her echo looked good as well.  It’s funny though because they couldn’t get a good look at Ava’s shunt during the echo, and the tech even had a doctor come and try…  and I came very close to offering to show them how I’ve seen other tech’s do it, but I refrained.   I’m positive I could do it, but if I couldn’t I would feel very silly. 🙂

Now, the cardiologist that is part of the Single Ventricle Team we saw yesterday was a bit pessimistic.   He didn’t think Ava’s heart function had gotten worse, but he mentioned that it hadn’t gotten better either.  I was surprised that they hoped it would get better and asked him if they really expected that,  and he just said that a few kid’s hearts do.   He also threw out the word ‘transplant’ which I found a bit strange as we are nowhere near having to think about a heart transplant for Ava at this point.   I know that for single-ventricle kids, a transplant is often the reality, but according to the Children’s hospital of Philadelphia, there are thousands of people in the 20’s and 30’s living with single ventricle hearts, which is amazing news, although even then they often have to deal with other health problems.   Thankfully Ava’s cardiologist –   Dr. Jaeggi – also came by yesterday and he was much more optimistic and pleased her with echo results, which was reassuring.

And so walking away from that appointment I felt that over-all,  things were positive.  And we don’t have to go back to Toronto until April 23 for Ava’s pre-cath appointment.  Her heart catheterization is on the 25th of April and the dr did say that if the catheterization went well and they feel that the pressures in Ava’s heart are low enough,  and she is strong enough to with-stand surgery, that booking her next surgery in May might be an option.   That would be amazing!  And they also said that no matter what happens with Ava’s heart, she will be so much better off after the Glenn Surgery  (You can read more about all three of the surgery’s here) and it will just be wonderful to have it done before summer.

So that was our Toronto trip yesterday.  We left at 6:00 am and returned at 6:40 at night, a long day, but a good day and it’s so good to know we don’t have it do it again for a whole month.  And I’m always greatful when we can go there, and then turn around and come back.

Amen. 🙂

3 Months old…

Ok so I’m a little late, but our precious Ava was three months old March 4th… and she is also 10 lbs now too which is exciting.   And sometimes I look at her and think that she looks so ‘normal’….

ava blanket

But then the other day I held her and just cried for the fact that she isn’t a normal healthy baby, even just for her own sake.     She is who she is and I know that, but oh, sometimes my heart just gets the best of me and I just wish that we weren’t on this journey at all, and that my precious Ava was born perfect and healthy and that we didn’t have any worries or cares with her.

And now Friday at 9:30 is her echo here in London where we will find out if her heart function is still deteriorating or not.  If it hasn’t, her test in Toronto can be scheduled to see if her heart is ready for her next surgery.    If it has  there is a chance we will be admitted again into Sick Kids because she may need to go on some heavy-duty meds to help her heart out.

But we are still trusting God – as I was saying to a friend the other day – we have to trust God as there aren’t any other good options out there.. haha, but so true! 🙂

And I’m so glad He is faithful and sure…

O Lord, you are my God; I will exalt you; I will praise your name, for you have done wonderful things, plans formed of old, faithful and sure. Isaiah 25:1 

We’ll keep you posted!

Productive Paranoia

So I’m writing this today from the hospital in London – because Ava was admitted here yesterday… but not to worry, she is doing just fine.    Yesterday morning I called the Single Ventricle Hotline at Sick Kids in Toronto to talk to our nurse practioner there, because Ava just wasn’t right.  She had been vomiting with her feeds through the night and breaking out into cold sweats and was pale and listless in the morning.  So our NP told us to go to the hospital and had us call an an ambulance to make sure we got to the hospital safely.   And I’m glad we did because Ava was de-sating (her oxygen levels in her blood were dropping) and the paramedics were able to give her some oxygen on our way there.

In emerg I shared with the doctor that I had some concerns that her ng tube wasn’t in far enough and was causing her reflux and distress, so they ordered an x-ray right away to check placement and  then we just waited to see the cardiologist.  He came and ordered and echo, and thankfully we had gotten that one last week so they could compare.

Anyway, to make a long story short, the ng tube was a bit too high up, and so we could move it down, so her vomiting and reflux have stopped.   And her echo looks good compared to last week, but there is a tiny concern that her shunt may be slightly blocked.   Oh and her blood pressure is a bit high.  So we are hanging out here and waiting to see what Toronto says as the cardiologist here confers with them.

I’m a tiny bit anxious that Toronto may want us to come and hang out there for a few days, but if that was the worst of it,  it wouldn’t be so bad,   I could visit with all of the friends we made there! 🙂

And so our nurse practioner Sarah said yesterday, it’s best to practice productive paranoia with Ava (as opposed to paralyzing paranoia… hahaha).   She is very fragile, and as  the cardiologist reminded me again last night, 10 – 15% of single ventricle baby’s die before their next surgery, so we just can’t be too careful with her.

And I got some sleep last night as the kind nurse fed Ava all night for me and gave her meds.  How nice.

We are just waiting now to see if we can go home today,  and even if we can’t right away, we certainly aren’t suffering and I’m so glad that Ava is in good hands.

So thanks for all your prayers and hopefully will be able to update you again soon.

Thanks again for tracking with us through Ava’s journey!

Echo was good

Sorry to take so long to update on Ava’s echo-cardiogram that happened Monday morning, but I am happy to say that it came back saying all is well and her heart is doing fine.    We were definitely happy to hear that.

And then there is Ava’s tummy which has caused her so much grief, and well it’s interesting.   Because she had to be sedated for her echo, they didn’t let her eat for 4 hours before.   But then the echo was an hour late so it ended up she didn’t eat for 5 hours.  And then Sunday night, so the night before her echo,  the nurse that was on (his name is Steve and he goes to Harvest Barrie – cool huh?) didn’t like how there was so much pressure when he tried to get air from her ng (nasal gastric) tube, so he ended up replacing it.  And when they measured for the new one they ended up adding 2 centimeters to the length so it is a longer tube.  And then for a brief time after these things happened,  so  Monday night and Tuesday all day and then last night Ava’s tummy has been wonderful  and hasn’t given her much trouble at all.   So was it the new NG tube?  Or the little fast that she had, that gave her tummy a break?   We’re not sure but it was so nice to have Ava happy and sleeping peacefully.

But then today happened.    Oh boy.   So it started when we were working with the  Occupational Therapist to try to get Ava better at her occupation of being a baby.  hahahaha.  But seriously, Ava needs help learning how to take a bottle.    I had mentioned in my last post that Ava used to take a soother when she came up from the Critical Care unit, but with all the gagging and retching she did while she was on formula has finely tuned her gag reflex and now she utterly refuses to take a soother or a bottle.    But because the OT still thinks that Ava is not completely recovered from her vocal cord paralysis and still needs thickened fluids so she won’t aspirate,  she tries to get Ava to suck on bottles with thickened formula, even though we all know formula hurts her tummy.  But Ava needs to know how to take a bottle so she can do the feeding study where they x-ray her to see if she actually needs thickened fluids.  Confusing I know.

Anyway, so Ava got a bit of formula from the bottle, and her session with the OT made her 12 pm feed late.  So then to get her back on track we started her next feed on time which didn’t give her a full three hours between meals,  which made her start to complain.   And then to make matters worse I gave her a dose of pro-biotics (thanks for the tip Vanessa!!) at the same time, and I think the combination of formula, too much milk in general and then pro-biotics which the cardiologist fellow says can cause gas when you start using them – have all combined to give her a not so happy tummy again, oh man!!!   This could be a very long night.

Now she seems settled for the moment, after a hot pack on her tummy and a bath and lots of cuddles, so hopefully it wont’ be that bad after-all.     And please continue to pray for her weight gain, she did gain 6 grams from yesterday to today, but they are actually looking for a 30 gram per day gain and so we have alot of work to do.

But now you know her heart is fine and her feeding issues aren’t directly related to that, so that’s good, but we still have a long way to go!!

We are here till we grow…

So it would seem that this little monkey…

ava

Needs to grow into her shunt!  She finally had her echo-cardiogram this morning and praise the Lord her heart function looked good – which is such a relief because that had Jay and I  really worried.

But now that they have ruled out that her heart isn’t working too hard, they’ve basically said that she is sending too much blood to her lungs because the shunt is too big – too big on purpose because it won’t grow and she will – and that is why her oxygen saturation’s are at higher levels than they would like to see for a baby who has had the Norwood heart surgery.

So the consensus today on rounds was that we have to stay here at the hospital until Ava grows into her shunt!    Oh man!  So does that mean days, weeks or months?  I have no idea.  Thankfully another cardiologist came by this afternoon and said that they really don’t want to hold us hostage here, and that if Ava is doing well in all other areas, that they would discuss her case with the team and hopefully we might be able to go home,  even though we would not meet the  protocol for sending home single-ventricle baby’s.  So all we can do now is pray and make Ava eat… lots.

And that’s not easy because although her tummy handles my milk just fine,  she can’t gain weight on it because it doesn’t give her enough calories and she uses up more calories than a normal baby would just by living.  And unfortunately her little tummy just can’t handle the extra volume she would need to make up for this – when they have tried to increase her volume she just throws it up, even though she gets fed over an hour.

So they supplement my milk with condensed formula for calories, but she doesn’t tolerate that well either,  so she still hasn’t gotten up past her birth weight of 8 lbs, even though she gets fed every 3 hours around the clock by her ng tube.   And it’s breaking my heart, but she’s having a hard time even sucking on a soother without gagging and retching so please pray that we can get over that hurdle so that she could start to feed orally… the occupational therapist was here again this week trying to get Ava to take a bottle but didn’t get too far, plus it really tires Ava out.

But her little vocal cord is starting to heal because Ava is getting louder every day, so hopefully we can do a feeding study before we get out here to see if Ava can drink non-thickened fluids without aspirating  – and that would open the door up for breastfeeding.   So many hurdles to jump over.

Thankfully she is doing well in other areas, and its so cool that Ava is now meeting our eyes!  My parents came down last weekend and my mom was so kind and stayed with Ava over-night and almost all of the next day to give me a little mini-vacation with my family and when she was here Ava started meeting her eyes and responding!   She was looking right at my mom when she snapped this pic…

avabyoma

And it’s so cool to see Ava start to meet these milestones, even though her prolonged stay in the critical care probably set her back bit.   But back to my parents, it was so great having them here last weekend and then we were blessed even more this week when friends came to  visit us yesterday and today.   We can’t tell you how much we enjoy these visits.  Our kids love seeing friends and Jason and I love it and it just makes us feel closer to home.  Just like when people send us emails or even leave comments on the blog,  we find  it all so encouraging, even though we might not always find the time to respond back.

So we are just going to get into a groove and take things day by day and pray that Ava will grow!

It’s heavy…

It’s a little strange, I feel like I have two lives.  One life is  here with my four healthy normal children, taking pictures of their first day of school, playing keep-away with them in the pool and reading them bedtime stories.

And my other life is lived in hospitals, getting echocardiogram and ultra-sounds and talking with Dr’s  with lots of tears and concern surrounding our unborn baby.

Two lives, one blog,  so I apologize for the mish-mash of light stuff and heavy stuff to be found here, and just be prepared that this post is on the heavy side (and long side too).

So backing up to August 24th when they went in and opened up the baby’s aortic valve, they did an amniocentesis at the same time.  I’ve never had one before, and have never wanted one.  But I see now that the dr’s were definitely looking to see if there was a reason why this baby might have a heart condition.      Syndromes like DiGeorge syndrome or Down’s syndrome both could present with heart problems, although they were pretty confident my baby didn’t have Down’s or DiGeorge based on ultra-sound findings.

But as it turns out, my baby does have a syndrome,  Turner Syndrome.    My baby has a genetic problem.   Can you believe it?  I certainly had a hard time hearing that.   It was another huge shocker.  Never in a million years did I think that this could happen, but it did.   And her aortic stenosis can now be attributed to it.

So what is Turner syndrome?   Well Turner syndrome happens at the very beginning when cells start to divide and a piece of genetic information is dropped or garbled from the mix.  So where most women have two X chromosomes, our baby only has one X chromosome in some of her genes, and in the other genes,  one normal X chromosome and an isochromosome (a malformed X chromosome) in the others.

This loss of an X can lead to quite a few issues, but with a broad range of symptoms,  and they never really know how severe or mild  the disease will be until the baby is born and starts growing and these issues present themselves.  The most common characteristic of Turner’s is a lack of growth which results in short stature, as well as a lack of fertility.   It’s not inherited, any mother of any race or age can have a baby girl with Turner’s and there is a 1 out of 2500 chance that it will happen.  (There is a 1 out of 750 chance your child could have Down’s Syndrome.)

It’s one of those things that no parent ever wants to hear.  To find out your child will deal with something for the rest of their life that they will never be cured from is heart-breaking, even though the difficulties Turner’s presents typically can be over-come by modern medicine.  Still, it’s another challenge for our daughter to face coupled with her heart issue and we are very sad for her.

And speaking of the baby’s heart issues, we drove to Toronto again yesterday to have another echocardiogram done and meet with the cardiologist and see how baby’s heart was progressing.   I wasn’t planning on looking at the screen while they were doing the scan, but I did.   And when I saw that her left ventricle was still large, still not functioning well and that it wasn’t filled with oxygen rich red blood like it should be, but just a little blue blood trickling in, I started to cry.  I knew then that God had chosen not to heal her at this time and my heart started to really hurt.

And the cardiologist explained after the echo was done that the aortic valve has closed a little like they hoped it would, but still the pressure in her left ventricle is still so high and the function is still so low, it looks as though the left ventricle is burned out and it’s just a matter of time before the left side of her heart is lost…  and would go hypoplastic and she will end up with Hypoplastic Left Heart Syndrome.

But that’s speaking in medical terms.  We fully believe that there is still room for God to heal her, and we are still praying for that, but right now  it feels like God’s plans for our daughter aren’t lining up with my plans and I’m grieving.

I read recently that grief is an emotion designed by God to allow us to mourn things that we have to let go of.  Right now I’m grieving now the fact that if things don’t change, I won’t be nursing and cuddling and showing off a new baby, but watching her in a hospital room recovering from open heart surgery.   And what does that look like?   What does leaving my 4 young children for a long time and staying in a large city away from home for weeks and weeks look like?   Will Jason be able to join me?  The the kids cope OK?

I don’t know these things or have any answers and I don’t even know if before then or during that time God will call my daughter to come home back to Him.  But what I do know is that God has promised never to leave us or forsake us… and in the little things like providing baby sitters and parking spots and friends to cry with,  He has been there for us every step of this journey so far.   Here’s another verse I cling too…

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.  Deuteronomy 31:8

Do not fear, do not be dismayed…  but those are the two things that come so naturally to us aren’t they? We fear because we can’t see the future and we are dismayed because we are going places we never wanted to go.  But through all of this Jason and I are clinging to our faith in God, know that if God is telling us not to fear or be afraid it’s because He knows what He is doing and He has a plan and a purpose for our baby’s life and our live’s too.

A dear friend dropped by today knowing that I would be having a tough day (I was) and she brought me my 3 favourite things…  flowers, chocolate and a book (I’m so blessed!).   The book was Anne Voskamp’s book “One Thousand Gifts” and the first chapter is all about losing children believe it or not.  Anne lost a little sister growing up and her husband’s brother and wife lost two babies.   And in the first chapter Anne wrote…

There’s a reason I’m not writing the story and God is.  He knows how it all works out, where it all leads, what it all means.   I don’t.    

That spoke to me.  Of course we would change how things were going, if we could direct things differently we would.  But we aren’t in control, we can’t see the outcome,  and so we are choosing to trust the one who is… the one who formed us and knows us and has a plan for us.

He knows it’s heavy, but He is with us and will never forsake us.

Amen

Alot to be thankful for…

Wow – so if you have read the previous post (which I recommend) you will see that my dear friend Christa has posted our most recent news – that our unborn baby has a serious heart condition called critical aortic stenosis. 

What a shock is just putting it lightly.

After 4 healthy babies to find out news like this was the last thing we expected.   I expected to have the same kind of pregnancy as always, straight-forward and uncomplicated.  But just like getting pregnant with this little one in the first place, God clearly has other plans for us.  And even though this road ahead seems rocky at best,  God has been our strength through this time, and to show you just how faithful He has been, I think I will show you a time-line of the events that transpired since we found out our news Tuesday morning.

Tues, Aug 14 – After making our way home from the hospital and being prayed for by a wonderful friend who is also a pastor at our church, we made our way back up to the cottage, bewildered and numb.  My mom had been staying with the kids while we were away and although it was nice to be reunited with our family, we knew we had some big decisions to make.   We called our contact from the cardiologist we had just seen to tell her we wanted to go talk with the cardiologist at Sick Kids hospital in Toronto to find out more about the procedure that could be done on the baby now.

Aug 15 – 9:00 am We receive a call telling us that the Cardiologist in Toronto – Dr. Jaeggi –  was very interested in seeing us, as he thought he could do something for our baby, and could we possibly come in that afternoon or the next morning to meet with him.  As we had to make arrangements we opted for the next morning and started making arrangements to leave that night.

Aug 16 – 8:00 am, we were waiting in Sick Kids hospital in Toronto for an echo-cardiogram
9:30 – Met with Dr. Jaeggi after the scan who is the head of the fetal cardiac program.  He explained the procedure, how they could go in now and do a balloon dilation on our baby’s aortic valve.  This would in theory open up that valve, which could then save her left ventricle, which was already showing signs of damage from trying to pump blood through a closed valve.   If her heart continued to be damaged, she would end up with Hypoplastic left heart syndrome, which means she would be born with a non-functioning left side of her heart at birth – obviously NOT good.

10:00 am- With God’s peace flowing through us, we told him that we wanted to go ahead with it.  It was the baby’s best chance at saving her heart,  and even though the procedure comes with a high risk to her, we felt that if it were her time to go, that was in God’s hands not ours.  He was surprised that we had already made our decision,  and told us that the next step would be to go over to Mount Sinai hospital to go see the OB that was part of the procedure team.

10:30 am – We started waiting for the OB.   We waited and waited and waited…

12:15 pm –  Finally saw his nurse!  She wanted to do an ultra-sound to measure the baby’s weight to see how much anaesthetic she would need for the procedure, she told us she thought the procedure would be today – we were surprised, but still not really thinking it would happen that quickly as we had been told it might happen Friday or Saturday.   She explained that the  biggest concern was that the baby had to be in the exact right position for the procedure – and this was as the baby was doing flips and somersaults while she was trying to get her measurements.   And she also said they sometimes they had to wait hours for the baby to co-operate.  We started praying then that God would put his hands on this busy baby and position her correctly when the time came.   I had to stop eating and drinking and she told us we would be waiting again.

12:30 – 4:30 – Waited and waited and waited some more… we were very bored and very keyed up, not a good combination. 🙂

4:30 pm – Finally got called to see the OB!  Dr. Ryan who is the head of the fetal medicine unit at Mount Sinai – started the ultra-sound on me, right away said she was in the right position, and we should go ahead with the procedure now!   Praise the Lord!!!!   We sent out the word to pray that she would stay correctly positioned.

4:45 pm – People went into action like you have never seen, Jason went down and got me admitted, the anesthesiologist was called, the cardiologists from Sick Kids that help with the procedure were called over, nurses prepped, I changed into a hospital gown praying and praying that the baby wouldn’t move.

5:00 pm –   Dr. Ryan checked the baby again, was worried she was going to make a fool of him as she had moved, but we kept praying and trusting God and when I got on the bed in the procedure room and they checked me again, she was in a great spot and still asleep, or at least not doing flips… my IV went in and a sedative given, they prepped and talked and made final adjustments to her position by externally manipulating her, something they could easily do since my previous 4 children had made things nice and roomy. 🙂   God is good, He held her there, what an incredible answer to prayer.

5:24 – Jason left the room and they started – they punctured my belly with a needle and gave the baby her anaesthetic and pain killers and then started the procedure, going through my belly again with a needle that had a wire and balloon inside…. putting the wire into her aortic valve, inflating the balloon and drawing it back through so that her valve would open.

5:33 pm –  The procedure was done!  9 minutes!  Incredible, absolutely amazing!  The cardiologist did a scan and could see that the valve had indeed opened, God is so good!

10:30 pm – Jason and I were walking back to the hotel room, praising God and rejoicing that it had been done already, what incredible timing!!!   I had been given something so that I wouldn’t go into labour, but I had God’s perfect peace that the baby would be OK.

4:30 am – Woke up in the middle of the night and felt the baby moving again!  She had come out of her anaesthetic, how amazing and wonderful, she was still alive, praise God!

Friday, Aug 17 – 9:30 am – We met with another OB at Mt. Sinai for another ultra-sound and everything looked great.  The baby seemed fine, blood flow to her brain was normal, and best of all that valve was open and they could see blood flowing through it – something they hadn’t been able to see before.  Now we just had to start waiting to see if that left ventricle will heal and shrink like they hope it will.

11:15 am – We were on our way back home!  With such a sense of joy and peace that God had been so gracious to us,  had wrapped His loving arms around us and orchestrated everything so perfectly that even the OB that morning had said it had all been surprising that everything had come together so well.  Dr. Jaeggi was supposed to be on leave, but had come in that day for us.  Dr. Ryan did this after his shift was over and the nurses even stayed late for us.  God brought them all together for His plan and purpose and no matter what happens from here on in, I will never forget that incredible display of God’s mercy towards this baby and us.  

So now we are back up at the cottage, but this time we are able to relax and know that whatever comes next we have so much to be thankful for.   We will be going up to Toronto again on Friday, so please keep us in your prayers as we hope to see some progress with that ventricle showing that healing has begun.

We want to especially thank our friends and family for their support this past week through emails and texts, thank-you, your encouragement was wonderful…
Thanks to my mom for staying with the kid while we were in TO…
Thanks to Jason’s parents – his dad for making hotel arrangements for us and paying for them..
Thanks to our church family for praying without ceasing for us…
Thanks to our friends who stepped in to help my mom with the kids at the cottage…
And the dr’s and staff at both Sick Kids and Mount Sinai hospitals, who although they didn’t even know us, sprang into action to do what they could for this little unborn baby girl.

All we can say now is that GOD IS GOOD and even though our journey is just starting we know we can trust in Him completely!!!!