Ava Kallie You Will Always Be In Our Hearts

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Oct 12

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It’s been 8 years. 8 Years since our little girl was born and then left this earth several hours later. I’ve never fully shared our her story and thought it was time!

Ava Kallie was born at 1:08pm on Sept 2 2010. She was 7lbs at birth, 5 ½lbs once all the excess fluid was removed. Ava was 18 inches long. She had a small amount of dark brown hair & blue eyes. She got to meet her family & her big brother got to kiss her feet!

She fought hard from the 1st moment she came into the world, but unfortunately there were too many complications that she was fighting against. She left us for a better place later that day at 6:55pm.

The Journey… My Little Fighter Ava

January 5 2010, this is the day we found out about you! I was at work & needed to know if there was a little life growing inside me. I called your dad right away to let him know the amazing news, we were so excited. We thought we would try to keep it a secret for a while but it was hard. A couple days later we ended up telling Justin that he was going to be a big brother!

You gave me a hard time right for the beginning! I was nauseous so early & that feeling stayed almost till the end! I also started showing so much earlier with you! But you also gave me the joy of feeling you kick early on. I was only 12 weeks pregnant when I began to feel your kicks! You were a mover!

April 20, 2010 We got to see you for the 1st time & found out that you were a girl! You were so active & stubborn oit took twice as long to do the ultrasound. Plus you had your legs crossed so it was difficult to say 100% that you were a girl. The ultrasound tech told us that we may have to come back for another ultrasound because she still didn't get everything. We were so excited we didn’t give it a second thought that it was strange we would have to come back.

April 21, 2010, I was at work when I got a call from our midwife telling me that there were unusual findings on the ultrasound & she was going to send us to McMaster Hospital for follow up. I was told to be prepared to be there for most of the day so they could run an extensive ultrasound & meet with a doctor right after.

We went for the ultrasound which took forever and they called in several people to look on the screen. Then we were sent upstairs to the 4B clinic to meet Dr Mohide. We still didn't know anything. All I knew was that something was wrong. It was there that we were given the devastating news. The doctor began to tell us that you had a heart defect where your valves weren’t closing properly & you had a hole in your heart. They also said that you had a severe cleft lip & palate & possibly a Dandy Walker Variant in your brain. They said that with all of these things together it appeared that you possibly had Trisomy 13, a chromosome disorder - in which case you had a 50% chance of surviving through the pregnancy & if you made it, you most likely would not survive more than a few hours. We were shocked, devastated, numb, that part was such a blur.

They said there were a few things we needed to consider & decide that week. They were telling us that because there were so many “complications” we had the option of terminating the pregnancy. Well that was definitely not an option for me. I actually thought - how could they even suggest that? For one, God gave us to you, so HE was the only one who could take you away. How could this little girl that was so active inside me have all these things going on? What if they were wrong? Wrong about all of it or even part of it. What if you were our miracle baby who survived against all odds & grew up to be a healthy girl? I didn’t understand how all of this could be happening to us, to you? I had done everything perfectly in this pregnancy. I ate everything that I should eat, stayed away from the things I shouldn’t eat or drink. I took my vitamins, I exercised. I never smoked or did anything that was harmful. They told us it was nothing I could’ve done or prevented.

We also had to decide if we wanted chromosome testing done to see if you did in fact have a syndrome & find out more info about you. The only way to do this was through an amniocentesis. Of course we went ahead with that.

April 28, 2010 We got to the hospital just in time for the amnio but they were delayed 2 hours. Oh well, this gave your Dad & I a chance to talk about what we were going to do when you were born and if it came down to it how long would we fight for you. We decided then that we never want excessive medical intervention… meaning we did not want the interventions to compromise your quality of life any more then it may already be. We knew that we never wanted to be put on life support so the thought of any of our kids being on life support was out of the question.

It was time for the amniocentesis … they stuck a huge needle in my belly. The actual procedure was quick but then we were told we’d have to wait 2 weeks for results. A few days later the initial results came back! The FISH results came back negative! You do not have Trisomy 13. One test over & done with good news. Now we just have to wait on a few more results to see if you had a chromosome disorder or we could just treat your actual symptoms?

May 6, 2010 Back to McMaster. We needed to know exactly what was wrong with your heart so they were an echo to get a more in-depth look. They found a hole in your heart which according to the cardiologist, is not a big deal. It probably wouldn’t even need to be repaired. But they also found a severe leak from the one side of your heart to the other. So, now we had another doctor telling us that your chances of making it to term are very slim, If the fluid started to leak outside the heart, you would not make it. How? How could this be? You were still so active, your heart rate was always normal. It didn’t make any sense to me, it different feel real. So, the next step was a referral to Sick Kids in Toronto.

May 11, 2010 Ultrasound #3 was another long one because you were too active to catch everything! Dr Mohibe informed us that the amnio came back clear! No chromosome disorder that they could find! BUT they were still concerned with all these other issues so another referral for me - to the High Risk Clinic. That means, no more midwife appointments.

May 12, 2010 Sick Kids EchoCardiogram with Dr Golding. Your Grandma & I drove to Toronto to see what the specialists had to say. Dr Golding repeated the same procedures as they did at McMaster. They found the same things but said you were happy & stable for now inside me! Best news yet! He said that you severe AVSD & leaking. But if it stayed within the heart you’d be ok. He booked a follow up when we get to 32 weeks. Keep fighting Ava.

June 2, 2010 Ultrasound #4 You gave us a bit of a scare today! Your HR dropped from 140 bpm to 70 bpm. So of course we needed to go for another test! This time we were having a non-stress test to check you out. Well, you did great! Nothing out of the ordinary with the test!

After all these test I had my 1st appointment with the High Risk OB Specialist. Everything looked stable for the moment. So no news is good news these days.

The one thing we did find out was that the ultrasound did reveal that you were really tiny. You were only 25% of where you should be. GROW AVA GROW! My BP was elevated compared to what it typically is, but really who wouldn't have a higher BP with all the stress! They told me I would be coming at least every other week for appointments, if not every week. Since you scared us in the ultrasound, they wanted me back the following week already. The doctor also wanted me off work starting today. This was a bit of a relief since I was driving to so many appointments & feeling so totally drained by all the information.

Your big brother, Justin is so in love with you already! He kisses my belly & listened for you almost everyday!

June 9, 2010 another “no news is good news” day! They are even letting me go 2 weeks before I have another appointment.

June 30, 2010 I had an early appointment because your Uncle Joel was getting married! The ultrasound was 1st as always. During the ultrasound I knew something was different. The tech told me to wait so she could see if the doctor needed any extra info. The tech wanted to make sure I was going straight upstairs for my appointment. Of course I was, I always did. Once I got upstairs, the nurse brought me into the non-stress test room & immediately began hooking me up. She said they needed to see how the baby was responding at the moment & the doctor would be in shortly to go over everything. That was unusual, the doctor never came in during the test. Once hooked up, you were being a sleepy baby, not moving much. But then when I think back to it, you had been moving less in the last week.

The doctor came in and began asking me if I had anyone with me or if there was anyone they could call for me. Then she began to explain that your heartbeat wasn’t good. The doctor said that when they did the ultrasound they discovered that the fluid leaking from your heart was now leaking into your belly.

In the last 2 weeks, your condition had gotten significantly worse. She said that the hydrops were now invading the rest of your body & your heart was not performing as it should during the non-stress test. She believed you were experiencing heart failure. I broke down, I cried & couldn’t stop. I had nobody with me & I was just told that you were not going to make it. The doctor thought it would happen sooner rather than later because of how quickly the fluid leaked in the past 2 weeks. SO again I heard the words “your baby isn’t going to make it”. But now they were telling me you only had days. Your dad wasn’t answering his phone. But your grandma answered & said she was on her way to pick me up since they wouldn’t let me drive. The doctor said to be aware of your movements over the next week & come in if they decreased at all. Well, I just felt sick & didn’t want to talk to anyone. ALl I kept thinking is you just needed to fight a little longer.

You’ve been such a fighter up till now, why stop? I knew that you were not well, had been told it so many times. But I just found it so hard to truly believe it. Earlier on I began praying hard that you would be OK. Now those prayers turned into hoping that you were not in pain. I prayed hard for peace & strength for myself which I believed is the only reason I was so calm most of the time. God gave me peace & allowed me to enjoy you!

Well over the next week, you started kicking & moving like crazy! You also enjoying sticking your head in my ribs! I didn’t understand how you could be in heart failure & distress but moving more than ever?

July 7 2010 Next ultrasound & OB appointment. The doctor was shocked, there was no change. She thought for sure you would have gotten worse. You were fighting so hard.

July 14 2010, You have finally grown! They took your measurements again & it was showing that you were actually where you should be! Some of that was extra fluid but they said you were definitely getting bigger! I was also starting to get bigger!

July 16 2010, well you gave me a scare today! I was terrified & stressed because I barely felt you move all day. Finally some movement, you must have just been sleepy.

July 21 2010, this was the date we were headed back to Sick Kids. Your grandma & oma came with me. They confirmed the information the McMaster had given me in the last couple of weeks. Your leak had gotten a lot worse causing hydrops in the rest of your body. They also said that your heart had gotten very large due to the fluid buildup. This was causing your heart to push on your lungs. But you were still hanging in there!

The doctor told us that he wouldn't consider delivering you early because there were so many complications already, they didn’t want to add to that by bringing you out too early. So we booked an appointment for 3 weeks. They decided that I would be delivering you in Toronto, not McMaster in Hamilton. I was also scheduled to see a new OB at Mt Sinai in Toronto. I decided we needed to keep everyone updated better to have as many people praying as possible. So I setup a “care page” through Sick Kids. It lets me write details of what was going on & update the information daily. Anyone can sign in & read the info as well as leave messages.

Aug 11, 2010 Everything was the same as it had been that last few weeks. They were surprised that you hadn’t gotten worse but they still had strong doubts about you making it through delivery. They told us that once you are born, the hard part will be finding a balance between treating your heart & your lungs. Basically, whatever they do to improve your heart has a negative impact on the lungs & vice versa. So it will be a day to day assessment. We got to tour Sick Kids Critical Care which is where you will be immediately after delivery, once you’re stable enough.

Then we went to Mt Sinai (across the street) to meet with the High Risk OB there. He was great but again told us that the chances of you making it much longer are barely there - same as they’ve been telling me for the past 2 month & yet you’re still fighting! He said we have 2 big decisions to make over the next week before I go back. How do I want to deliver? This was surprising since all along they have been saying C-Section again. But he said I would be better off not having a c-section & he strongly recommended me having you naturally. The other decision we needed to make is how much intervention we want them to give you: none, keep you comfortable, or do everything they can to help you survive, or somewhere in between.

Aug 18, 2010 Now we’re going to Mt.Sinai in Toronto every week for my appointments until the end. You gave the nurses a hard time today during your ultrasound! So much moving around & rolling! Your Dad & I met the pediatric doctor to decide what actions we want to take after delivery. We decided that you had fought this hard so we wanted to keep fighting for you & we wanted to give you an opportunity to keep fighting. That meant that when you’re born, they would put the breathing tube in & assess you. We agreed that if your heart were to stop we did not want them to do CPR or give you epinephrine to restart your heart. If your heart were to stop, you would be deprived of so much oxygen that your quality of life would be very poor if you survived.

The doctors had given you a 10% survival rate & they were still saying you may not make it to delivery. The other decisions we had to make was much easier - we agreed that they should remove your fluid either just before or just after you were born. We also decided that I would have a c-section. This would place less stress on you & I needed to have something within my control at this point. They set the date, Sept 2 at 11am! We can’t wait to meet you & your big brother is tired of waiting for you!

I’ve started having braxton hicks contractions everyday. I’m in what they call false labour. We are hoping that you would stay in just a bit longer - you have less than 2 weeks to go. I’m having a hard time making it through the day now… there is too much amniotic fluid - usually at this point you start to slowly lose it - but I keep gaining it. But it's so worth it & I’d do it again for you!

Aug 25 2010 Everything stayed the same during the appointment. They ended up checking me to see if I was dilating because of the constant contractions & because your brother was born 3 weeks early. But nothing, they sent me home until next Thursday - The BIG Day!

I really truly believe that you are going to fight your way through everything! It has never crossed my mind that you won’t make it. Although there have been people reminding me of this all the time - so now it’s time for me to prepare for that possible outcome as well. This is so hard - putting together clothes & blankets for you if you don’t survive.

It’s the night before we get to meet you! You are so active, more than ever! You dad felt you kicking him in the back & you are keeping him up!

Today is the day we get to meet you! We are so excited & hopeful! You have been such a fighter the whole time & survived against all the odds the doctors gave you. We thought, how long will we have with you? Hopefully a lifetime, we never gave up hope on you sweet Ava.

We arrived at the hospital for 7:30 am so they could get me all ready for the c-section. 9am came & went & we had to keep waiting because there were other emergencies ahead of you.

Your big brother was scared to come near me because of the IV hooked up to me & the hospital bed. Finally, the doctor came in to tell us we would be going into surgery at 12:00!

I was excited, nervous, scared, & happy all at the same time. They took 45 min to put in my spinal! Once they finally got it they let your dad in the room. We were ready to start! It didn't take long until you were out. I caught a brief glimpse of you while they took you into the resuscitation room. This was the worst part, we had no idea what was happening & I couldn’t move. Nobody knew anything because they were all still working on me. I just wanted them to leave me and go see what was happening with you. The door would open but I still couldn't see what was happening. What is going on with our little girl? You had to be ok since I still felt you move right up until they froze me. There was so much movement in the other room it must be a good sign that you were still fighting to meet us.

Finally they let you dad in to see you for a minute. He took a picture to show me because he wasn’t able to stay in there. You were alive! You were so beautiful, sweet, & perfect! I started crying right then. I was so overwhelmed by so many emotions. “Hang on just a little longer”. The doctors said you were blue when you came out, but I didn’t even notice. I just saw our perfect little angel fighting for life.

Once they finished my surgery I was taken to another room to recover, with a promise that I would go back to see you once you were stable. It wasn’t long before the nurse came & said your dad & I could come & see you! They wheeled me right beside you! SO precious! I felt so helpless with you hooked up to so many things & with myself not being able to move most of my body yet. You were so tiny, Your dad said your feet looked like mine. You actually had hair, it was curly & brown! You were quivering which scared me because I didn’t know why, it was like you were crying & I couldn’t comfort or hold you. You looked better then when your dad 1st saw you. You were showing signs of improvement, the doctors thought you were going to be able to be transferred to Sick Kids soon. I held your feet because your hands had IVs in the them. You were perfect & we were in love!

The doctors said we had to leave so they could get you ready to be transported. Shortly after, the nurse came back & said the rest of the family could come in, a few at a time, to meet you. This is when you started taking a turn for the worse. I knew something was wrong when they kicked family out & brought your dad & I back in. They told us that they thought you were having seizures & that your brain wasn’t getting the oxygen that it needed. I knew this was not a good sign. We got to be with you again & this time I could not stop crying, I knew we were losing you. But more importantly I thought you may be in pain & I could do nothing, I couldn’t even hold you. The doctors told me you weren't in any pain. They were trying to stabilize you & then reassess you. Your dad & I didn’t want you in any pain, so it was beginning to look like we were going to have to say goodbye. So soon after saying hello. They took us away while they worked on you more.

In the meantime they took me to a different room where I would be recovering for the next couple days. The paediatric specialist met us in the hallway & told us that you were still having seizures & you weren’t getting enough oxygen. If you survived through this your quality of life would not be good, if any. He said it was our decision what we wanted them to do next. We could have you transferred to Sick Kids for them to assess you again or we could choose to keep you comfortable with your family for the last few hours or minutes of your life.

When we found out several months ago that there were so many complications we decided that we would fight for you & with you, but we never wanted you to suffer. It was still so hard saying those words that night. You had fought so hard & we fought hard for you, but God had other plans for you. We decided to keep you with us & spend your last few moments with you. You grandparents went to visit you 1st. Then your dad & I went to say goodbye & hold you and bring you to your big brother. All I wanted was to hold you & protect you & take you with me.

The doctor came in & we knew at that point you had been taken to heaven. You were now at peace & safe. You fought so hard to meet us & we are so thankful for those 6 hours that you were with us. They unhooked your breathing tube & IVs & monitors. They placed you in my arms & I wrapped you in your blanket. We took you back to our room to be with you for 1 last time. We tried to explain to your big brother that you weren’t going to be coming home to live with us. He had been waiting months for the moment to take you home. But we had to break the news that you were in heaven with Jesus & the angels. Justin touched your toes & wanted to see you. He gave you a pink bear blanket that he picked out for you (just like his blue puppy).

Your Aunt Janalla was there to take some pictures of you & us as a family to remember that moment & remember that you will always be part of our family.

The hospital took moulds of your feet & hands for us to keep. We spent a bit more time with you & then said our final goodbye until we all join you in heaven. You may not be with us on earth but you will always be in our hearts. You will always be our sweet girl who was just too precious for life on earth.

There is not a day that goes by that we don’t think about you. Your big brother is always talking about you!

Love you so much, always & forever, never forgotten

Mommy

As a father this is the hardest thing to deal with. I didn’t know what to write until I came across a song with lyrics that melted me. Here are some of the lyrics that touched me.

Rest your little wings tonight

You’ve had a long & weary flight

Lay your head upon my chest

It’s time to sleep you’ve done your best

We’ve left your room the way it was

For no reason just because

We celebrate the journey that you traveled

Be courageous

We are waiting for the day

Precious little angel of mine

You’ll be safe until we get there

And now you cannot suffer anymore