Ava’s Story

I’ve been meaning to write our Ava’s Story for a while.  Since I had to opportunity to write it out for our church newsletter I decided it was the perfect opportunity to put it all together and finally publish it here.  

“They are worried about your baby’s heart.”

This was not the news I was expecting when I answered the phone call from the midwife.  That afternoon I had gone for my routine 19 week ultrasound and in my hands was an ultrasound photo showing a precious baby girl.  We already had four children – so how could something be wrong with this pregnancy after four healthy ones?

Three weeks later Jason and I sat on the edge of our seats at in the pediatric cardiology department of our local hospital.   Even to our untrained eye the echocardiogram that had been done didn’t look normal.   Finally we were called in by the cardiologist and his first words to us were  “Let me show you what a normal baby’s heart looks like, and then I will show you what your baby’s heart looks like.”

All I could say was, “Pass the Kleenex.”

The Cardiologist explained that our baby had a serious congenital heart condition called critical aortic stenosis – where the artery coming off of her left ventricle was so small, it was affecting the left side of her heart.  The most probably outcome of this would be hypoplastic left heart syndrome, where the left side of her heart would stop functioning and she would be born with only a half of working heart.    She would need open-heart surgery right at birth if she survived the pregnancy.   Or we could abort her now, wait until she was born full term and then hold her until she passed away, or try an experimental procedure in utero where they would try to fix the problem.

We left that appointment feeling completely stunned, not really believing this was really happening to us.  I was very emotional and just wanted to go home and cry, but we had to make a decision on the experimental procedure quickly and we knew we needed to talk to one of our Pastors.    Thankfully our Pastor Leo met with us right away and prayed for us and told us that going to Toronto was a ‘no brainer’.

After a lot of prayer and talking things out with family and friends, we found ourselves at Sick Kids Hospital in Toronto a few days.   We had another echocardiogram and talked to another cardiologist. He explained this ‘experimental’ procedure and said that if it succeeded,   baby’s swollen left ventricle would heal and a minor valve repair surgery would be all she’d need after birth.  This procedure carried a huge risk to the baby, but we felt that this was her best chance, and God gave us tremendous peace, so we agreed to have the procedure done.

We walked across the street to meet with the Obstetrician at Mt. Sinai who would do the procedure.  After waiting over five anxious hours to see him, we were finally called in.

The baby was miraculously in the right position and so the doctor and his team wanted to do the surgery immediately.  In a whirl-wind, Jason rushed to have me admitted while I was being prepped.  I was nervous and excited, but mostly hopeful that this would work.  Cardiologists were called from Sick Kids Hospital and the team was minutes away from doing a procedure on our 24 week-old unborn baby girl.

God truly answered our prayers and kept that baby in the right position until she could be sedated, then going in through my belly and into her chest wall they preformed a balloon dilation on her aorta that was so tiny and closed it was hard to believe the doctors possessed the technology and ability to actually try to fix it.   In less than 9 minutes it was over.  We praised God for His goodness, believing that He was going to heal her. The next day after a quick ultra-sound the surgery was pronounced a technical success and we headed for home.

Then came the heartache. In the next few weeks and months as we kept going back to Toronto for more appointments and echocardiograms it became clear that the baby’s heart was not healing.  Even though everything had pointed to God’s hand in that intervention, her left ventricle was slowly dying. We had to face the fact that our baby would be born with only half a working heart.

All that kept going through our mind was why did God allow this to happen if it wasn’t going to work?   We still don’t have the answer for that question. But we just clung to these verses in Isaiah 40:27,28,30b when God asks the people of Israel why they question Him – their way isn’t hidden from Him, He is the everlasting God, His understanding is unsearchable!

And this is where our faith had to kick in.  It’s easy to trust God when things are going right, but now things were going wrong and it was so easy to turn to despair.  But knowing that God knew what we were going through and that His ways were higher than our ways allowed us to choose everyday to trust in Him.  To trust Him and put the life of this baby in His hands.    In the months leading up to her birth and impending surgery, all we felt we could do was trust that God would be glorified however this story played out, knowing that God loved this baby and had a perfect plan for her life.

Our daughter Ava Samantha Grace was born Dec  4, 2012 in the early hours of the morning at Mt. Sinai hospital.  I was prepared for them take her away immediately, but I was not prepared for her to be as purple as a blueberry!   Ava’s heart defect was depriving her of oxygen so they quickly whisked her away to stabilize her.   An hour later, after allowing my husband and I take a quick peek at her she was taken to Sick Kids Hospital.

Two days later I was walking beside Ava’s bed as they took her to surgery.  Jason and I wondered if we would ever see her alive again.  During the long and difficult six-hour wait, Psalm 23 was on my mind.   It seemed like Ava was walking through a valley where death was lurking in the shadows.   We placed our trust in God knowing that He is the giver of life and we prayed that He would be guiding the surgeon’s hands and holding her safely in His arms.

She survived the surgery!  But now back in critical care she looked more bionic than baby, there didn’t seem to be a square inch of her that wasn’t covered in wires or tubes. She was still on a ventilator and her chest was still open, the only thing covering her tiny beating broken heart was a piece of gauze.

The days were long as all we could do was sit by her bedside, waiting for her to stabilize.  We couldn’t hold her, only touch her hands and stroke her head, and pray for her to recover.    One nurse commented that we were coping so much better than other’s in our situation and we knew it because God was keeping our hearts focused on Him and His plan for our little Birdy.

Finally, almost two weeks after her surgery, Ava’s sternum was fully closed and things seemed to be headed in a good direction.  But God still had some challenges for our family to face.   The very next day, I took our daughter Sarah who was 5 at the time to a walk-in-clinic, only to be sent back to Sick Kids. It was there that she was diagnosed with Type 1 Diabetes.    This was a huge blow to Jason and I, and it was so hard to understand.  We were dealing with so much with Ava, and now we had another child with a life-threatening disease, a disease with a steep learning curve.   It was five days before Christmas and the stress on our family and our relationship was incredible and we didn’t know how we were going to cope.   It was hard to keep it together in front of the children, but thankfully all they were thinking about was Christmas.  To be honest I didn’t want anything to do with Christmas, there didn’t seem to be much to celebrate that year.  But once again, God showed us through our children’s joy on Christmas Day that we still had our family and His love and those things were worth celebrating.   Going forward we decided to divide and conquer.  Jason took on the diabetes education and care for Sarah and I concentrated on Ava.

We were finally able to take Ava home February 11th after 68 days in hospital.  We had battled feeding intolerance and heart issues for our whole hospital stay, but the staff was now confident we could care for her at home.   It wasn’t home for good and we knew that.  Ava would need another heart surgery when she was around 6 months old, but for now we were thrilled to move back home and have our family all together.

We loved having Ava home, but it wasn’t easy!    Her care was demanding, and her feeding and medication schedule kept me busy almost 24 hours a day.   The doctors had warned us that many babies with this defect don’t make it through these first months, so we tried to be diligent in her care and were in touch with her heath care providers daily.  Thankfully so many people pitched in to help to keep our home running smoothly and our church organized meals for us and my mom would often stay and Jason  was keeping good care of Sarah and the other kids.   Our family had adjusted well to this new crazy life of having Ava home, the kids helped out when they could and showered Ava with love.

Unfortunately in mid April, Ava was hospitalized in London with what turned out to be influenza B.   She was quite sick and even when she got home things just didn’t seem to be right, her breathing was laboured and she would get clammy.   All we could do was to hope and pray that  God would heal her little body so that she would be healthy enough to get her second surgery which was coming up.

On May 5th  Ava was well enough that we could take her to church to have her dedicated.  Our Pastor Norm prayed for her and we were so encouraged by our church family.     But five days later we were back at Sick Kids for a routine clinic visit and it was then that they said her heart function was decreasing and we would have to stay, they were going to admit her.

It was now May 10th, Jason’s 40th birthday , Ava was five months old and I couldn’t believe that she and I were now back in Toronto.   Jason and the kids were still in London so our family was separated once again, however we were confident that it would not be for long.  The doctors had been very positive and were saying that if Ava could have some testing done on her heart in the upcoming week, then they would plan on booking the surgery she needed for the week after.  I was envisioning a speedy recovery for Ava and being back at home that summer as a family reunited.

Jason came down to be with us for one of Ava’s major tests – a heart catheterization.  She would be put under and a camera inserted into a blood vessel in her thigh where it would travel to her heart so the doctors could do some diagnostic testing.   We were confident that the results would be fine, and were totally unprepared when the surgeons came back with bad news.   Ava’s one and only heart valve was terribly leaky.  It was the culprit behind her poor heart function and it was raising the pressure in her lungs, basically removing the possibility of surgery.   This was devastating not only for Ava’s sake, but I started to see my plans for returning home and reuniting our family start to crumble.  The medical team started tossing out the words ‘Heart Transplant’ and these words soon became our reality.

On June 11th, when Ava was 6 months old, she was officially listed to receive heart transplant.  But this wasn’t a cure, the medical team were very clear that receiving a heart transplant is like trading one heart disease for another.  And not only that, but waiting for a heart could take from 6 months to a year.  A very long time, especially considering Ava’s deteriorating condition.   Jason and I were doubtful that she had a year to wait.

Thankfully were we able to get another apartment at the Ronald MacDonald House fairly quickly, so now our family was at least all in the same city, but we didn’t know how long our stay in Toronto would be.  Would we be there weeks, months, or even a year as we waited for a heart?   Ava wasn’t doing well and a few times we came close to losing her and we just kept praying that a heart would come fast.    Those were very tough days as I walked to the hospital each morning, not sure how I was putting one foot in front of the other.   Facing each day was becoming more difficult, but I never walked alone.  Each day, God would remind me of a verse or a song, or someone would call or come to visit or leave a message on our blog that would encourage my heart.    Jason and I knew that God was carrying us through each day and He was being so faithful

The end of July came and Ava was getting worse.  She was sleeping most of the time and it was clear she was in heart failure.  She was puffy as her heart couldn’t move fluid around her body, and even though she was on an adult size dose of diuretics, she was gaining fluid every day.  She needed help to breathe so she was on CPAP which was helping take some of the load off of her heart,  and she was on the highest dose of the heart medication that they could give her.   We were constantly talking with the palliative care team about how to keep her comfortable and how to prepare our children if something happened to her.  We were praying desperately for a heart which was the only thing that could save her, but it hadn’t come yet and time was running out.

Finally, on August 15, 2013 we had to say good-bye to our precious Ava.  God choose to heal her not by sending her an earthly heart, but by taking her up to Him and giving her a brand new body that would never hurt again.   It was bittersweet because although it was so hard to say good-bye to daughter – it had been harder still to watch her suffer and we felt God’s peace in knowing that this had been His perfect plan for her all along.

It’s been over 18 months now since we said goodbye to our precious little Birdy.  Often I think about how life would be if we had her still and my heart aches for the loss, but deeper down, I know that my heart is healing.    We have no bitterness or anger and looking back all we can see is God’s faithfulness and goodness to us, and we look forward to the day when we will see our Ava again.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

This is Ava’s verse that we were given and it’s now on her gravestone.  We hold on to this verse knowing that even though Ava’s heart did fail,  God is now her reality and our strength.

Best Mother’s Day Ever

Well first off…  Ava is doing good.  They still have her on continuous feeds (so she is being fed a small amount continually) and she is getting lots of diuretics and that has definitely helped her heart rate and breathing.   They didn’t really change anything for her today and we should have more information on what the plan is for her tomorrow when all the staff are back and they can have a group huddle about her.

So today is Mother’s Day.  And I wanted to say that I have been so blessed with my wonderful mother and a wonderful mother-in-law… praise God for putting these women in my life.   They have taught me so much over the years and have been there for us every step of the way on this Ava journey and I am so blessed.

But this afternoon I was alone with Ava in our room and I was feeling kinda blue and missing my family, and sad that we couldn’t be together for Mother’s Day.  I thought Jason was taking the kids to church and I tried phoning him afterwards and he wasn’t answering and was sad that I couldn’t even Skype the kids.

I had just resigned myself to a quiet lonely day, when in walked Jason and the kids!!!   Amazing!   My incredible husband drove down to Toronto with the kids just so we could be together today.  And how blessed am I to have such a great guy in my life that has no problem getting four kids ready, and spending 2 1/2 hours with them in a vehicle – well probably more like 6 in total – and being organized enough with Sarah’s diabetes, so we could be together.

We had a great afternoon together and enjoyed some Mother’s Day activities here in the hospital and now I can start the week energized and not down and depressed.

So thank you to my mother’s and my husband, and to great Dr’s and nurses here at Sick Kids.  We have so much to be grateful for today and that makes today,  the Best Mother’s Day Ever.

6 weeks of survival…

Ok – so we are 3 days into being home and I’m already exhausted…. oh dear.    And this is with Jason still home and my mom here and people bringing us dinners… scary huh?   It’s just that caring for Ava doesn’t leave a lot of room for sleep at night – I’m up for an hour at midnight,  feeding Ava, giving her meds and then pumping.   And then again at 3:00 am for at least a half hour feeding her again and then again for another hour around 6:00 am feeding her, giving her meds and pumping again.   Phew…

And with her ng tube,  feeding her is pretty slow, and it has to be slow or else she will throw everything up.   At the hospital they used an electric pump that just pushed her milk through her tube into her tummy over an hour.  But  since you can’t go home on a pump, we are using the gravity system instead which is a bottle that is attached to a tube with a drip chamber.  You hang the bottle upside down, adjust how fast it drips into the tube and let it go.  Except gravity is tricky because it can just stop when the pressure gets to high, or it can run through too quick,  and so it needs to be watched pretty close and because of that I’ve stopped using it at night.   I’ve tried, but night number two I woke up to realize that Ava’s entire feed hadn’t gone through at all, the milk was stone cold and she was starving.  I was so mad!    But another reason not to use it as night is just for safety,  if she somehow pulled her ng tube out, or if the milk started flowing too fast it could choke her.  So now at night I have to manually put the milk in a syringe and push it through the ng tube which I try to do over 40 minutes.  It’s nothing like feeding a normal healthy baby.  Nothing at all like getting up in the night and taking your sleepy hungry baby to bed with you and lying there nursing the baby  as you both fall contented back to sleep.   I wish.

And Ava still isn’t regularly breastfeeding…  which is a blog post in itself so I’ll chat about that later.

In good news, we spent yesterday afternoon at the hospital here in London so the cardiologist here could get a baseline on Ava.  She got a chest x-ray (poor little monkey) and an EKG, an echocardiogram and some blood-work.  A full work-over and thankfully everything looks great.   The nurse practitioner here in London was wonderful and I’m so glad that we live close to a good hospital.  We will be doing shared care, so next week we go back to Toronto and then back again in a few weeks to London.   We see each place once a month I think so every two weeks Ava will be seen by a cardiologist.  We will also be visiting Ava’s pediatrician here in London and we have a nurse that will come to our house once a week to check her out as well, so hopefully nothing falls through the cracks during this ‘interstage’ that Ava is in between her first two surgeries.   This isn’t a good time for single-ventricle baby’s as I think I mentioned before – they are very fragile with not much resistance so it will be nice to get through this time till her next surgery.

And that is where my six weeks of survival comes in.    Even though we are home, it doesn’t feel like home because I’m not picking back up my normal life… no baking, or shopping or cleaning or cooking, and it doesn’t feel that good.  But then after chatting with my wonderful caring and supportive husband tonight – who himself has had his hands full caring for the kids and trying to sort Sarah’s diabetes stuff out so she can go back to school – I realized that it’s kinda like taking your first baby home.  I always say that the first six weeks with a new baby is often just about survival, as you learn your new baby and get used to sleepless night… and that thought cheered me up because that’s kinda like life for us right now.   These first 6 weeks will likely be tough.  But as Jason says, she hopefully will get stronger every day and things will get easier and maybe even by the end of March we will be talking about her next surgery which would be awesome.

So it’s just about taking this day by day, sleeping when I can, not trying to do too much and just realizing once again that this is a moment in time.  God will get us through it.  It’s tough now, but I can hardly wait till we can look back in a few years and say, wow, remember when we first brought Ava home and how with the help of friends and family and by getting our strength from God, we got through.

And it is good to be home.   And I’d rather be here than at the hospital.   So I hope I’m not whining,  I just need to start this 6 week count-down and keep my eyes on the prize of getting her bigger and stronger.  So please bear with me, I hope I don’t get too grumpy and I’m sure eventually all will be OK.  🙂

This treasure in a jar of clay…

This sweet little treasure in a jar of clay…

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Ava who is our treasure… created by God perfectly, just the way He wanted her.

Before we had Ava, our Pastor Norm preached a sermon on 2 Corinthians chapter 4, verse 7…

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us…

And Norm explained that we are those jars..  we are frail and easily chipped and cracked just like the terra cotta flower pot that he dropped on stage to surprise us all – and we are even easily shattered.   I know that I can certainly relate, but it doesn’t matter that we are frail, because God can use us and work through us.  And then He gets the glory, AMEN.

And for His own purposes, He chose Jason and I to be parents of another little jar of clay…  our sweet Birdy, who already has more chips and cracks than most others.

And a month or so ago it hit me, that I’m a mother of a child who has a single ventricle heart and who someday may need a heart transplant and it made me sad… she’s not going to just ‘get better’ like my other kids and I started feeling guilty for even having her and putting her through all that she went through… and it was a very low time for me, a bit of a valley.  And as I was coming to terms with this, a kind friend sent me an email in response to hear that I was feeling down.  She wrote this..

My heart aches for you, but also rejoices in your faith and that I know God knitted Ava together in your womb — He did not make a mistake —  He made Ava as he planned. He also chose you to be her mom — He chose you with purpose. He will not abandon her or you.

And it still makes me cry.  Ava is just as she is supposed to be.  And even though she’ll always be my little chipped jar of clay,  she still has an eternal soul and I pray that I’ll be able to share with her this truth that Christa found for her… (from Pinterest of course)…

she was placed

And I think I can speak for Jason as well when I say that we wouldn’t trade Ava for anything, or even trade this experience of having her and going through her surgery and recovery.  It’s been quite the journey so far and tomorrow we start another as we come home and learn to care for her at home, but once again we have faith in our almighty God.   And I think that we can sum up this whole hospital experience in these words from later in the chapter of 2 Corinthians…

So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light and momentary affliction is preparing us for an eternal weight of glory beyond all comparison.

So we can say, to God be the glory, and thanks for giving us Ava, just as she is!

So tomorrow…

Tomorrow is the day… the day of Ava’s feeding study which I’m so nervous about.  For this feeding study they will give her a bottle of sugar-water and barium and take an x-ray video of her swallowing while taking the bottle.   This will show them whether or not her vocal cords have healed sufficiently for her to be able to drink thin fluids and not aspirate.

If the test shows that she is swallowing properly then that will allow her to start to learn how to breastfeed and she would also be able to start taking my milk from a bottle –   yahoo!  And hopefully that would lead to eventually getting rid of the ng tube!!!

And if her vocal cords haven’t healed and she still needs thicker fluids, well, I don’t know what we will do.    The hospital won’t thicken breast-milk because they have deemed the thickener needed to do it  ‘unsafe’ and so that leaves formula that has to be thicken with rice cereal – and the combination of those two hurt Ava’s  tummy so much and just make her want to throw up.

So please please pray that Ava’s vocal cords will have healed.  I so need to trust God with this and not stress because I know how I will feel if the news isn’t good.  So I’m not going to worry, I’m just going to trust a faithful God and know that He he will carry us through whatever the results may be.

And talking about removing her ng tube,  the other day when we replaced it, I snapped some pics of  Ava without it…

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Oh my beautiful girl!!!   I just want that darn tube gone for good… oh Lord, please give this mamma patience!!!

So now to change the subject, we’ve been in Ward 4D now for a month!   And as I was walking back to the hospital last night after having dinner with Jay and the kids, I was kinda shaking my head at how adaptable us human’s really are.    It almost seems a bit normal now to be here and live at the hospital.   The nurses and other people here are even starting to feel like family, except others keep getting better and leaving, while we are still here, which is a drag.

I do truly  miss living with my own family, and I can’t wait for us to get home, but I guess knowing that this whole hospital stay is just a short moment in time compared to all eternity is really helping to get us through.   And instead of focusing on how less than ideal the situation is right now for our family to be separated   we just try to keep focusing on that point in the future when we can look back and say, “Hey – remember how God so faithfully got us through all those months at Sick Kids?”   Thankfully the days just fly along here and its crazy that  Jason and I came to Toronto December 3rd to have Ava, two months ago.  So much has happened since then that I feel like I’ve lost all sense of time.

So please pray again for tomorrow.  I am going to need a huge dose of God’s grace to sustain me if the news isn’t good – but again – her vocal cords have to eventually heal, but patience can be difficult when you feel you’ve already been waiting for such a long time.

I love how I can share all this on my blog and know that through it we receive so much encouragement.   Thank-you all so much for sticking with us and travelling this journey with us!!

We are here till we grow…

So it would seem that this little monkey…

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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…

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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!

Another busy day…

It’s another busy day here at Sick Kids, and it’s hard to believe that we have  been here for 6 weeks!  The time has flown, probably because the days here are so busy.   Take for instance today,  we have already had a visit from the dietician , a visit from the occupational therapist (and she is coming back at 4 today), two visits from genetics, one visit from someone doing a research study, our daily check-over by our nurse practitioner,  a quick visit with a cardiologist, rounds of course came by this morning where they do their daily chat about Ava and that’s not including the nurse popping in every so often and it’s only 2:00 pm!

Yesterday was kinda more of the same, but it had a funny start to it.  I had been up late with Ava the night before  as her tummy was hurting her and then I was up a few times with her again in the night so I was so tired yesterday morning that I didn’t get up when my alarm went off at seven.  And even though I like to up and be ready to meet the day shift nurse, I didn’t worry because I thought I would wake up when he or she popped their head in the door around 8:00 – except I must have slept through that too.

So I was still sound asleep at 8:15 when in through my door burst the Orthopedic doctor and the resident!  I sure woke up in a hurry, and made an attempt to gather some dignity and look alive and alert as I listened to their findings with my foggy morning brain.

But I’m pleased to say that they only had good news.  Based on Ava’s x-ray of her legs and hips and after their assessment of her, they didn’t find anything clinically wrong with her.    They did see evidence on the x-ray of some previous interruption of Ava’s bone growth, but things are growing well now and she is healing.     She also had an ultra-sound of her hips done yesterday and it was perfectly normal so that was encouraging.  I know that Ava still doesn’t like being moved and complains at diaper changes but as my mom pointed out, she’s probably just sensitive all over , and I just noticed the discomfort of her legs more because that’s the only part of her that was being moved fairly consistently.   But the bone people will follow her up in 3 months just to make sure.

And then because of her Turners Syndrome, genetics has also gotten involved.  They also saw some things on the x-rays that made them curious, so they will also be following up with Ava in another 6 months to see if these things are resolved or need to be looked at.    And when I was talking to them they agreed to another blood test on Ava to determine her Karyotype for Turners – this test will take 6 weeks to get results and I’m really pleased as it should give us some more information on what to expect with Ava in the long run.

So that is that…  but we are still here at the hospital with no plans on leaving anytime soon.   The biggest thing that has everyone concerned right now is Ava’s oxygen saturation levels in her blood.   A healthy person has 100% oxygen saturation in their blood and you need that to live, but thankfully babies don’t have to be 100% and with Ava’s physiology, they would like her to be in the low 80’s.  Because of her single ventricle heart, and how the Norwood surgery works – her lungs kinda steal blood that is being sent to other parts of her body.  So when her saturations are high, that means that oxygenated blood is shunting back to her lungs instead of going out to her body and that’s not a good thing. It could also mean that her heart has to work too hard.   So tomorrow Ava is getting another echo-cardiogram to compare with her January 2nd echo to see what exactly is going on and if her heart function is decreasing or not.  I hope not!  Oh I hope not, we just want to go home.

But God still has a plan.  It’s cool today because when I was talking to genetics, the Doctor  asked how I could seem so relaxed and calm with all we are going through, and I could reply without hesitation that it was our faith in God.   My soul definitely has grown weary through this long journey, but God is in the process of restoring me which I’m so thankful for.   I’ve been doing a devotional I found online called  “15 Days in the Word with John Piper” and even though I think that I just found it, I know that God led me too it.  The verse yesterday was this…

Psalm 55:22

22 Cast your burden on the Lord,
and he will sustain you;
he will never permit
the righteous to be moved.

I think when the journey is long, it wears you down.  But then I look back and I can rejoice at what God has done so far and how He has sustained us.  And looking ahead, even though we aren’t where we would choose to be, and even though things aren’t necessarily going the way we want them too, I’m still excited to see what He is going to do.

Thanks again for your prayers, God is still at work!

Quick update…

I’m so sorry I haven’t posted in so long!   For one, I have limited access to a computer now that I’m staying at the hospital and I hate blogging on my phone.  Thankfully I’m being loaned a laptop which will make staying in touch so much easier while I’m staying with Ava, so I should get back in the loop soon.  And I have so much to blog about!    I haven’t blogged about our other kids and how they are doing and I’ve been wanting too.  I will say that they are doing really well…. Jason is doing an amazing job taking care of them so I can concentrate on Ava, and it’s been great that they could start school at the Ronald MacDonald House this week so that they won’t get behind and we can establish a better routine.

Jason is also the diabetes king.  He has totally taken over Sarah’s care and knows her insulin doses and how many carbs she can have and what she can eat and I’m in awe of the amazing job he is doing.   At some point Jason and I are going to have to cross train on the girl’s care so I have a clue on what to do with Sarah, but for right now I’m more than happy to leave it all to him.

And then Ava.   We are definitely not home or ready to come home quite yet.    We still have some things to sort out and the big thing today is her legs and hips.   Since I’ve been taking care of her for over a week now I’m getting to know her better, and it dawned on me about 4 days ago that it wasn’t just diaper changes that made her cry, she was experiencing some sort of pain when we moved her legs.  So the resident came and checked her out and agreed with me and so Ava got an x-ray 3 days ago.   And today they are still trying to figure out what it shows and what it means!  They think that she has some sort of inflamation in her hips and maybe a fracture in her knee… so hopefully today that can get all sorted out and we can start dealing with her pain, poor baby and get some sort of prognosis and treatment plan if there is one.

And because she had a bad day on Wednesday with a very sore tummy we  didn’t complete her feeding study and it’s been delayed until next week.  They think they know why that happened and are sorting her out,  so that’s good, and she does seem to be much better although she still isn’t at her birth weight quite yet, so again we just wait and wait and hopefully she can start getting gaining weight and making some progress.

So that’s what’s been happening in a nut shell.  I’ve also been a bit emotional and down… I think the transition out of the intensive care has been hard and the future at home looks daunting and being away from Jason and the kids so much isn’t helping.    We had a wonderful visit from our friends and pastor Leo and Kim this week and that was very encouraging, and those who knew that I was struggling have sent me some wonderful emails that have been good for my soul,  and I think that I’m on the upswing now.   I know that God is still good and faithful, but I’m just feeling a little worn out,  spiritually and emotionally drained, but I know that is to be expected in a situation as challenging as this one is, but I also know that this valley won’t last forever.

So hopefully I can give an update on Ava’s legs soon and fill you in more on what’s been happening around here.  I can’t wait for that laptop!

The good news, the good news and the bad news

Ok wow, have we been busy!  You would think the days would drag by at the hospital, but I can assure you it’s the opposite, they fly by.     And it’s getting harder to find time to blog since I’m spending so much time now with Ava but I have a minute so I will try to catch up.

So as you see we have lots of news so I’ll start with the first good news…..which is very exciting….  when they did rounds this morning, the Dr said that in the best case scenario we might get discharged Thursday!  Thursday, this week!  How amazing and wonderful.

Now, that of course kinda depends on a perfect storm of everything coming together by then and I’m not so sure that’s possible, but I am very pleased that the word discharge was even mentioned in the same sentence as Ava,  that is such good news.   But even today they were a little concerned about her fluid levels which was affecting her breathing.  And it may be because they decreased one of her meds and if she has to go up on this certain med again we can’t leave.   So like I said, many things have to come together before we can go, but at least it’s being talked about, it’s exciting and scary all at the same time.

Now for more good news… the Occupational therapist came today to try to bottle feed Ava and that little monkey took it!!  She has never been orally fed in her entire month-long life and she did it and actually took 15 ml from a bottle which was way more than expected.  It tired her out though.  Because she is working hard just to live and breathe – and she breathes more than a breath per second any effort like sucking  wipes her out, but she hopefully can build up some stamina and increase her amounts.

Now the bad news… they are more than certain that Ava’s left vocal cord is paralyzed due to nerve damage that she would have gotten during surgery.    And it’s not hard to tell, the poor baby can’t cry, she is very very quiet, in fact her hiccups are noisier than her cry.   So hopefully the nerve damage will heal, hopefully within 6 weeks, and even if it doesn’t, in baby’s the vocal cord on the other side will often over-compensate.  I hope and pray my baby gets her voice back!!!

And what I learned today from the occupational therapist is that your vocal cords protect your wind-pipe when you swallow.  So if they aren’t working, or in her case where one isn’t working, it’s harder to control whether fluid you drink goes down your wind-pipe or your throat to your stomach.   So in order to make  it easier, they have to thicken the fluid that will go in Ava’s bottle… and yes, I am saying bottle and not breastfeeding and that’s our reality right now.   Tomorrow we are doing a swallowing study with her where she will swallow glucose with barium and they will x-ray her to make sure that fluid is indeed going in her tummy and not her lungs – so please pray for that.   It’s not ruling breastfeeding out, just right now we need to wait for her to heal, but don’t worry, we will still practice, and do lots of skin to skin time.

So that is just a few of the the things going on right now -hopefully I can post more tomorrow!

Moving on up!

It was a big day yesterday,  Ava moved out of the Cardiac critical care unit and up to the fourth floor!  It feels so good as it’s a step in the right direction for Ava, going to the 4th floor means we are one step closer to going home.   Here she is, all bundled up like a pea in a pod, ready for her big move….

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The fourth floor is the cardiac floor, and so it’s all kids recovering from heart issues, or kids who are waiting for heart transplants.  It’s definitely more relaxed than the CCU and it’s so nice that we don’t have to call to the front desk and get permission to visit Ava like we had to do when she was in the CCU, now we can just waltz in and visit her anytime.

So in her new digs, there are four children and 2 nurses, it’s called a ‘step-down’ room.  And these nurses are still busy, but it’s a different busy than the CCU, it’s more feeding and changing diapers and monitoring vital signs busy as these kids are mostly awake and need attention like all kids too, so here it seems that they really appreciate when a parent is around and can help with their child.

And Ava is doing so well.  She still has her times where she breathes’ really fast, but her heart rate is good and for the most part her oxygen saturation levels are pretty good. They are still monitoring them and for her a good sat is around 80, but sometimes she is dropping into the 60’s or over-circulating and going into the high 90’s.    This is might be normal for her, but it would be better for her to stay around 80, so we’ll see what they say around that.  Last night when I was holding her she was dropping down, but when I put her back in her bed, she had a little cough and her sats went back up, silly monkey!   But it was nice that she didn’t have to go on oxygen, which is what they do for her when her sats get too low.

So today we will hopefully find out what her goals are,  and what we need to accomplish before we can take Ava home.  I’m starting to get excited about that, so please keep praying that we would keep moving forward.

We also have some more diabetes training for Sarah today – Sarah our five-year old who now checks her own blood sugar!  I’m not kidding!  She pokes her finger and knows how to use her monitor.  She is just something else.

The plan today was to also attend an information session to see about putting the kids in the school here at the Ronald MacDonald House next week, but both Erik and Sarah have sore throats this morning.  I hope it’s just because it’s insanely dry here, and not because they are getting sick.    God has been so good to us so far with our heath, and so I hope that we can avoid bad colds or even strep-throat as this could even jeopardize Ava,  so please pray for this as well.

Well it’s another day here and I gotta get going.   We had a fabulous visit by some of our friends and neighbors yesterday. Such a boost for our morale!   And it just makes me want to go home and see everyone again…  Lord willing it will be soon.  But for now, just grateful that Ava is moving up in the world!