Milk

Kinda a funny name for a post I know, but it’s all I can think about it.   First off, Ava is having another great day, and she is weaned off her morphine completely!  They are still giving her some Tylenol to help her if she is still uncomfortable with her chest tube and what-not, but it’s so exciting that she’s off the morphine especially since in her hay-day she was on so much that I was afraid she would never been able to wean off her narcotics. 🙂

But now for the most exciting news…  remember how I had mentioned that Ava had chylothorax?   Basically that means that at some point – maybe during her chest closure – her thoracic cavity got nicked and then lymphatic fluid or chyle was leaking in her chest and showing up in her drain tube.  And that’s not good.  That extra fluid can also affect her heart and lungs and that’s very bad especially in a baby like Ava.  So to help her heal, she was taken off my milk and she was getting portagen, this horrid fat-free formula that they typically give for 6 weeks.

It really bugged me that she was on portagen, even though I knew she needed it.  But I also knew that she never had had that much chyle leaking and that there was even some debate about putting her on the portagen in the first place.  So in my complete lack of knowledge of hospital protocol, I got this big idea that since Ava had been on portagen for over a week and still had a chest drain tube in, that maybe they would consider trialing her back on breast-milk.  My reasoning was that since her chest drain tube was still in, it would be an easy way to see if she was still leaking.     One of the nurses encouraged me to ask, especially considering the cardiologist that was on was the one most likely to agree, and so 2 days ago I asked him right after rounds.  And instead of saying ‘no’, he said ‘maybe’.

As you can imagine I was surprised, but pleased, and when he came by later, I questioned him further and from what I gathered, he just didn’t want to do anything that would put her back a step in terms of breathing, and he made it seem like he would consider trialing her on it some time next week.

Yesterday when I went to see Ava,  our nurse that day, Tori, told me that she had some exciting news for me, and that they were going to start trialing Ava back on breast-milk that day!  The next feed in fact.  I was so excited!  So that was yesterday and she’s been on it now for over 24 hours and so far, so good, they haven’t seen any chyle leaking into her chest tube and that’s great news because typically it would have shown up by now.   So please pray that things would continue this way, my milk it’s so much better for her and it encourages me to keep pumping, which is incredibly tedious.

And more good news, Ava is doing very well off of CPAP, she did 12 hours yesterday and she’s been off today since 7 am with no plans to put her back on unless she needs it.

Things are looking up, but again, cautiously optimistic as always. 🙂  But she is so good now that really doesn’t belong in the cardiac critical care unit,  I was teasing her nurse today that I was leaving her with the best paid babysitters ever and I hope he enjoyed watching her sleep.  So different than a few short weeks ago when she was so much work to care for. It also means that within the next few days she should move up to the 4th floor, where the care wouldn’t be as intense and which also means one step closer to going home, praise the Lord!

Wow,  what an incredible and amazing work God is doing in Ava.  And I know that things could turn around anytime and who knows when we will be able to leave, but I’m so thankful for the small mercies, like even allowing her to be back on breast-milk even if only a couple of days and that her breathing has improved so much.

Our sweeet sweet baby… sleeping today in a big girl sleeper since she can actually wear one now!

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And I shouldn’t forget to mention that yesterday we had a family visit with Ava!   Our nurse and the charge nurse went out of their way to move Ava to a separate room, provide some toys and crafts for the kids and we could all visit with Ava and just relax together, what a blessing.  They have been so good to us at Sick Kids, it really is an incredible place.  As well we had some friends come to visit yesterday it was so wonderful to see some familiar faces and spend time with friends, thanks guys!

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So it’s been a good couple of days, we are counting our blessings and still trusting in a great God!

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Today I will choose

I have to be honest – this morning I woke up feeling pretty down… which is kinda crazy considering things are going so well.  Ava keeps losing more wires – this morning they pulled her pacing wires which were there just in case she needed an external pace-maker – and there is even talk of her losing her second drain tube today!  We’ve been holding her everytime we see her and she loves her cuddles and she is even doing well off cpap – yesterday she was off for 4 hours!!  And through this I can just see the power of prayer and how God has been so faithful in healing her.

So why on earth would I be down?  Well I guess because we are getting close to going home – but I’m sad because in my head home just won’t be the same.   I’m going home with a sweet baby who will probably turn a bit blue when she cries (her oxygen saturation will go low) and who I’ll have to watch like a hawk for any signs of heart failure… so scary.  And then life at home will also be different with Sarah with her pokes and needles and carb counting and scheduled meal and snack times and it makes me just long for the good-old days when things were just normal and easy.

Am I whining?  Sure sounds like it.   But as I was lying in bed this morning I realized I have two choices here.  One is to get depressed over how my life has changed and how hard its going to be,  or instead I can choose to remember just how faithful God has been up until now and how He is going to remain faithful in the future.   Boy do I feel like a broken record, this choosing to trust is apparently is not a one time decision!  I feel so much more pity for the Israelites now and how they kept forgetting they could trust God – I can see now in myself how my emotions tend to over-come my logic and its so easy to forget God’s promises and wallow in unhappy circumstances – even though wallowing just makes me feel crummy.

So today I’ve decided to remember God’s faithfulness once again.  The hymn ‘Great is thy faithfulness‘ came to mind this morning as I was walking to the hospital.  The whole “Grace for today and bright hope for tomorrow” bit as well as the line “All I have needed thy hand has provided – great is thy faithfulness Lord unto me.” really struck me and comforted me.  I could then pray and ask God to forgive me for my lack of trust and just lay our future before Him once again… and just trusting that He will go before and provide.  Oh the agains and agains and again!  How I wish I didn’t waiver!!!

So I’m back on track – resting in His peace and trusting in His faithfulness.   And I do feel much much better just in case you were wondering, so much better than feeling crummy.  🙂  So now I can enjoy this beautiful day and more cuddles with my baby and can be happy in the fact that Sarah has put on over 2 lbs in the last week – and looks amazing and is back to her normal sweet and spunky self.  God is good!

Amen.

I held her!

Oh, what a wonderful moment!   I got to hold my baby yesterday, after 2 weeks and 6 days, I actually got to hold my sweet Ava.    And even though she’s not used to being held, she didn’t mind, snuggled right down and went right to sleep.

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And even though it might look like I’m nursing her, I’m not…  to bad really.  The little monkey does have chylothorax and so is on special formula which she is getting right now through her NG feeding tube.  I wish this wasn’t the case, but with everything else going on, I don’t have the emotional energy to worry about.  Small blessings I guess! 🙂

But holding her was so wonderful,  even though we still had to juggle cords and tubes.   But it’s possible to hold her now because she’s off the ventilator!    They removed Ava’s ventilator Christmas Day and so we got to see her face with just her feeding tube in and the kids came and she was awake and it was nice, we were actually all together on Christmas Day – even if it was just for ten minutes.

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Terrible pictures I know…  we forgot our good camera and the kids were crazy, but it was nice we got a pic of them together for Christmas.

So now moving forward, Ava is off the ventilator but still has to spend quite a bit of time on CPAP, which stands for Continuous Positive Airway pressure, which helps keep everything in her lungs open.  So although it’s another tube, it’s removable and she’s spending time off it each day.  They also removed a line that was in her neck and she’s losing one of her drain tubes today.  It’s so exciting to see these things being removed, and seeing her get back to looking more like a normal baby.

And on the Sarah end of things, we are doing well.  She is taking her insulin like a champ and we will spend more time tomorrow at the diabetes clinic for more training.  Now that we’ve gotten over the first hump, it’s time to learn more about it.

So that’s where we are at.    And we are actually feeling calm these days which is a nice feeling.  The other night Jason and I were really stressed, but then realized that we hadn’t spent any time together,  (one of us is usually here at the hospital while the other is taking care of the kids), and so much has been going on with Sarah’s diagnosis and wanting to be with Ava and then adding in Christmas – so our stress levels were super high.  But we know now that we need to take time each day to talk with each other and pray together and sleep is always good too.

It’s still a day-by-day journey here, but praise to God, we are getting through by His mercy and grace.  And every day is one day closer to going home!!  I can’t wait!

Merry Christmas!

Merry Christmas everyone and happy Birthday Jesus!

John 3:16   “For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.

And that’s what Christmas is all about… Jesus came, and He saves us and loves us and it’s so wonderful to celebrate His birth at Christmas!

And you know what, we have been doubly blessed this Christmas.   The kids have been spoiled rotten with presents from the Ronald MacDonald House and Sick Kids hospital, we are receiving cards and gifts from our family and church family back and home, and we are so over-whelmed with everyone’s kindness.

Even Ava was busy the other day and made us a card…

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Many thanks to her lovely nurses Siobhan and Kash, who took the time out of their busy day to help our little Birdy make this card for us (it is awfully difficult to stamp your own feet when you are three weeks old!)  It’s definitely a card I’ll treasure forever.

And here is Ava all decked out for the holidays in one of her sweet little hosptial kimono’s courtesy of my wonderful neighbors.  They keep talking about removing her ventilator, but so far it hasn’t happened, but I’m sure it will come out this week, Lord willing.    When it does, I’ll be able to hold her again!

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And then last night we were able to attend a church service with another Harvest Family, Harvest Oakville and were so blessed by it. Sarah struck up a conversation with a woman in the bathroom and we got to talking and when she found out our situation the first thing she said was, “Oh, how can we help your family?”   But I was able to reassure her that our own Harvest family at home was taking care of us splendidly,  but it was so lovely to meet her and see the warmth and the care that comes with being part of God’s family.

I’ll just close this by saying how much we love you all and miss you all and even though we aren’t where we want to be, we still feel loved by everyone and we still feel God’s peace on this Christmas Day far from home.

Merry Christmas from the Colley family!

Whirlwind

We have just had a whirlwind of a time here – we said goodbye to our sweet Ava yesterday after Sarah finished her morning at the Diabetes Day center and then packed up and headed home!   I was hesitant to leave my baby, but we needed to get our other kids and we didn’t feel comfortable sending Jason back with Sarah and having to manage her care,  since we are still in the confused and befuddled stage as we are trying to figure this whole diabetes thing out!

And then I find out that today they just might try to remove Ava’s ventilator!   Which is wonderful and scary all at the same time.  So please pray.

We are heading back to TO now,  so sorry we couldn’t go to church and be with our Harvest family.  I can’t tell you just how much we long for our life to return to “normal”, even though our normal is going to look quite different now.

I’ll keep you posted as always!

 

Our two troopers..

Our two sweet girls did so well today! And Jason and I survived the day as well. I’m still feeling the after effects of the huge shock we received yesterday, but I feel tonight like perhaps I’ve moved a bit closer to accepting Sarah’s diagnosis. For most of the day today though, I would just look at her and think of it and start to cry, still not believing that she is going to have diabetes now for the rest of her life. It even still seems surreal when I type it. It just doesn’t seem possible.

We learned so much today at the Diabetes day clinic we attended all day with Sarah, and even though it was information over-load on our very tired brains, I think we retained some of it. We learned that to get juvenile diabetes you first have to have the genetic predisposition to it – and then there is some sort of environmental trigger to start it. When both of those factors come together, your body starts attacking your beta cells from your pancreas – and since the beta cells create insulin, your body’s ability to make insulin disappears.

The frustrating thing is, is that they have no idea what the trigger is that starts it, or if there are different triggers – they just really don’t know anything at this point.

But we were assured today that it wasn’t anything that we did, or Sarah did, nor was it caused by eating too much sugar. It just happened. Just like Ava having Turner’s Syndrome. Like my dad says, we live in a fallen world, full of sin and decay and these things are just a part of life. I’m just having a hard time accepting that they are now part of my life. It’s our new reality, and I’m still bothered by it!

Anyway, we spent the day being educated by a really kind nurse and a dietitian learning about the types of insulin and how it works and how to inject her and when Sarah can eat and what she can eat.

So the drill for Sarah now is 2 injections of insulin in the morning before breakfast, 2 more injections of insulin before dinner and we have to check her blood sugars 4 times a day, so that’s 4 times a day she needs her fingers poked to get a drop of blood. That’s 8 pokes a day, my poor girl. But if anyone is tough, it’s Sarah. She had blood drawn in emerg yesterday with a butterfly needle and she watched it and didn’t get upset at all, she is much better at all this than I would have been at her age!

And thankfully Sarah doesn’t have to change her diet, she can still eat everything like normal – it’s just when she can eat has changed, they have put her on an eating schedule. Eventually I’m sure Sarah will get an insulin pump which will make life so much easier, but for now, it’s lots of pokes and a plan. Oh well.

And again, Sarah did great all day. Now she didn’t want to check her blood at lunch and really didn’t want her insulin at dinner, and I of course had to be the one to give it to her! I didn’t want to poke her with a needle just as much as she didn’t want me to poke her, but I think I was the only one crying. 🙂 We managed – thankfully the injections are done with a special pen like thing – and then she was fine tonight when we checked her sugars. Actually she was mad at us for not having a tissue ready to wipe the blood off of her finger after, but I would rather her be mad then sad or upset!

And can I just say how much I appreciated everyone’s kind words and comments today? Jason and I both appreciated them to much, and found them so encouraging! You all don’t know how much your supportive words mean to us, they help, they really do.

And I can’t forget to tell you about Ava, sweet little Ava! She was a doll today! I think God knew we wouldn’t have the strength to worry about her today and we didn’t have to, she had a great day. And we did end up getting to spend quite a bit of time with her during our breaks with Sarah. And we had a great nurse today who let Sarah spend time with Ava too.. that was wonderful.

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And best of all, this afternoon Ava had her eyes open and was looking all around, it was so sweet. She is being weaned off her morphine so she’s not in such a daze, and we loved seeing her eyes all bright and open. And I helped give her a bath today and I got to lift her up while the nurse changed her sheet, how wonderful it felt to hold her! I haven’t held her since December 5th, 16 days ago, and it did my momma’s heart good just to hold her in my hands for those few seconds. And she’s even breathing on her own tonight even though they haven’t removed the ventilator. And she had her catheter removed, so we are definitely making progress, we are so thankful.

So thanks to God’s grace we made it through this day. We are exhausted, but encouraged by how well things went today. Please keep praying that both our little troopers would have good days tomorrow as well.

Two sick kids at Sick Kids

So tomorrow we will have 2 sick kids at Sick Kids hospital. Remember how I said that Sarah had been drinking lots? Well I took her to a walk-in clinic today and they pricked her finger to check her blood sugar levels and they were so high the monitor wouldn’t read it. The dr was so kind and said the best place for her was Sick Kids and wanted me to take her to the emerg there. So after giving Sarah and I hugs (she did!!) off we went.

And there after doing some test on her, the dr came in and told me that Sarah has type 1 diabetes. My beautiful sweet Sarah. Never in a million years would I have imagined this.

And we feel like we’ve been hit by a Mac Truck… I took Sarah in today to rule diabetes out – not get a diagnosis!!!

Jason said to me tonight that God never gives you more than you can handle – and isn’t it crazy what you can handle? But I’m not so sure I am handling this.

So I went back and read my post from the other night to remind myself that the danger of all dangers would be to lose trust and confidence in the mercy of God. And God must have been trying to prepare me because I had read this verse this morning…

2 Corinthians 4:8
We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken; struck down, but not destroyed.

And its true. This diagnosis for Sarah hurts and it doesn’t make sense and we hate it – but I know we are not forsaken.

To God be the glory.

Her chest is closed!

We are very pleased to report that they closed Ava’s chest today just before noon and she seems to be doing really well.  She’s not out of the woods yet – between 12 and 24 hours things can get dicey – but we will just continue to pray pray pray!!

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Here she is looking a little more normal again which is such a relief!   And today has been a much better day over-all,  praise God.

Oh my little Ava – please Lord – please keep her steady over-night and let her chest stay closed!!

His eye is on the sparrow…

Today is another waiting day.  We really thought that today would be the day they would try to close Ava’s chest… but it didn’t happen.   Alot of that had to do with her surgeon,  he had 2 surgeries today and didn’t want to squeeze in closing Ava’s chest, just in case he wouldn’t be able to intervene if necessary,  so it’s planned for tomorrow… so please pray!

And unfortunately it was a bit of a distressing day, mostly because Ava seemed really irritable  and I couldn’t even touch her without startling her and then she would look like she wanted to cry… and of course she can’t really cry because of her ventilator and then that distresses me.   Oh dear.

To make matters worse, last night they started to see some evidence of chylothorax… which basically means that during surgery Ava’s thorax may have been nicked, and now chyle – or fat is escaping into her chest cavity.  Sigh.  Right now just a tiny bit is chyle is leaking in, so they haven’t done anything about it yet.  But if it starts to pool, they will pull her off of the breast milk they are feeding her through her nasal gastric feeding tube, and have to start giving her a fat-free formula for 6-8 weeks.  It’s upsetting, but I just have to trust that God will intervene, heal her quick, or just give me peace about this situation.  And I don’t think I had mentioned that they have been feeding her my expressed milk through her NG tube, and that is very good thing, and I love feeling like I’m doing at least something to help her.   And eventually I would love to nurse her, but after meeting with the lactation consultant and a nurse practitioner today, I’m realizing that even though it is possible, it just might not happen.  Again, something I just have to let go and leave in God’s hands.

Oh – and to just make matters a bit more complicated for us, our little Sarah (who is 5) has been drinking gallons and gallons of water in the past few weeks and it had made us a bit concerned – especially  as the first thing that comes to mind is diabetes… AUGG!!!   So as soon as we get her health card here, we will take her to a walk-in-clinic.   We need to rule it out for peace of mind.  We also need to lay it at the foot of the cross and just know that God won’t give us more than we can handle right now… please Lord, I don’t think I could handle this as well as Ava!   So please pray for Sarah, that she won’t have diabetes, and that this is nothing more than a crazy water-loving phase.

But there is good news.  Jason and I have been reading John Piper’s Advent devotional, and today it was about missions. But I found it very applicable to us.  Here’s an excerpt…

In the mid-16th century Francis Xavier (1506–1552), a Catholic missionary, wrote to Father Perez of Malacca (today part of Indonesia) about the perils of his mission to China. He said,

The danger of all dangers would be to lose trust and
confidence in the mercy of God… To distrust him would
be a far more terrible thing than any physical evil which
all the enemies of God put together could inflict on us, for
without God’s permission neither the devils nor their
human ministers could hinder us in the slightest degree

And it’s true, we can’t lose our trust and confidence in God.  Not through the terrible things, nor the waiting, nor the setbacks.  And I’m so thankful to my friend Christa who made this reminder for me which now hangs over Birdy’s bed…

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And I love remembering that His eye is on our little Birdy, and He loves her more than me, and I don’t have to fear for her or be distressed.   Thank you Christa, for the reminder.  And here’s the verse where that is taken from… Matthew 10:29-30…

 29 Are not two sparrows sold for a penny?Yet not one of them will fall to the ground outside your Father’s care. 30 And even the very hairs of your head are all numbered. 31 So don’t be afraid; you are worth more than many sparrows.

This is not an easy road and believe me, I’m not stoic.  I’ve shed gallons of tears, but I kept being led back to the grace and mercy of God in our lives, and I’m so thankful that His eye is on the sparrow, or in my case, our little Birdy Ava Samantha Grace.

Amen.

Reunited

We are together again as a family!  The kids came down on Saturday and it was so wonderful to see them again, it was hard to believe I hadn’t seem them in almost 2 weeks.   The kids were pretty pleased with the Ronald MacDonald House and I’m so grateful that there is lots for them to do here because keeping them occupied is going to be our biggest challenge.

I joke that we’ve traded the stress of not having the kids here, for the stress of having them here.  And ha ha ha, but it’s kinda true.  We can’t completely concentrate on Ava now that the other kids are here and need us as well.  But in reality, since Ava is still hopped up on morphine and can’t be held yet, it is a good time to spend with the others – especially with Christmas just around the corner.   And we do love being together –  as together as we can be as a family without our little Birdy here with us too.

And Ava is doing good – very stable and still wearing her little corset that is pulling her chest tighter a little more every day.   Again, like I said we still can’t do much more for her than talk to her and  stroke her head and hands and feet, and her chest does need to get closed so we can make more progress.  But after last week’s failed attempt, I don’t mind that they are taking things slow.  I don’t want a repeat of that stressful episode!

But at any time they could decide again to close her up again,  so please continue to pray for wisdom for the dr’s and for protection from infection for Ava, and that the next time they close her chest, it will work!