Thursday, February 7, 2013

Congenital Heart Defect Awareness Week


 Congenital Heart Defect Awareness Week starts today until the 14th!   

Do you have a family member or know someone who was born with a Congenital Heart Defect? Congenital Heart Disease is considered to be the most common birth defect and about 40% of kids with Down Syndrome are affected by it.

In lieu of CHD Awareness week, here is Isabella's Heart Story!

Since I already have 1 in 2 ratio of carrying a child with Down Syndrome during pregnancy, the doctors have followed me & Isabella's heart closely by having Fetal Echocardiogram tests. The results were fine in each test & I was relieved to find out that despite of 99% chance that she may have Down Syndrome, at least, she'll have a healthy heart!

When Isabella was born, she required an immediate surgery that is related to a GI (GastroIntestinal Defect) and had to stay at the ICU shortly after I delivered her. On her 4th day (prior to surgery), the Intensivist told us that Isabella has a heart defect called VSD (Ventricular Septal Defect). The doctor probably saw the shock on my face & immediately said "Your baby has Down Syndrome, she will come with something". I admit, it wasn't very comforting but he said that the good news is, it's a small hole and she will outgrow it in a few months to a year.

2 day old Isabella at the ICU - and a visit from her brothers who after already scrubbing/washing their hands & is still sanitizing because they are eager to touch her.

Fast forward four (4) weeks of staying in the hospital (including a transfer), and after two (2) surgeries, two (2) procedures, a Stridor, some blood abnormalities (one is them is showing Toxoplasmosis - we didn't even have a cat, and RH Incompatibility). They also discovered that she also has Acquired Hypothyrodism, some kidney & liver problems (Jaundice & Cholestasis) and Gastroesophageal Reflux, the doctors were quite puzzled as to why she still requires an oxygen when the hole in her heart was small & everything else was being treated.

One of the new doctor in charge said that the murmur in her heart was so quiet - which means the hole is bigger. She asked for an immediate Echocardiogram. I even questioned it since Isabella's Echo is not scheduled for another 2-4 weeks (I guess I couldn't bear to hear a possibility of another problem when we were already dealing with one after the other. The initial 4 day plan stay at the hospital for surgery & recovery turned into a month.

True enough, they found out that the hole in her heart was not small but big, it was 5mm. They said that she needed an open heart surgery & the Cardiologist assured me that she will come back a new baby. I came home that night, cried & told my husband that I cannot take it anymore. He then said "Your daughter is fighting for her life at the hospital and you're just going to give up that easily?" Ha! That was a good wake up call!

Isabella was on a wait list for a heart surgery that has to be done in Edmonton, Alberta. They were trying to 'beef her up' prior to surgery so they added sucrose then eventually canola oil in her diet but very minimal success. Not long after, she was getting into so much heart failure {I know, the term sounded awful & I cried the first time they mentioned it in the morning rounds}. I guess in a way, it's like a never ending marathon or a never ending climbing up a flight or stairs for her that she couldn't even keep the food she eats for long before she throws it up again. Have you ever tried eating right after a 30 minute cardio/running?

Another Cardiologist was on duty at that time & have helped us bump up her surgery & the hospital in Edmonton agreed that her heart failure was getting worse. Her organs were also starting to fail. She was already on a daily CPAP at night & soon had to be in a ventilator. They were also kind enough to let her come home to us for a few hours, few days before the big day.

Isabella's first time at home but just for a few hours prior to surgery. 
On July 30, 2012 she was air transported to the Stollery Hospital in Edmonton, Alberta for her scheduled surgery on Aug 1, 2012.

They performed different tests and echocardiogram and found out that she has 2 more Congenital Heart Defect! Turned out she had a PDA (Patent Ductus Arteriosus) and PFO (Patent Foramen Ovale).

The surgeons rely a lot on the Echocardiogram so we had to wait until Isabella was asleep before they could do the test - this is non invasive & didn't harm her at all. 
Rick and the boys had to go back to the Ronald McDonald house the night before surgery. I barely slept, kept convincing myself that she really needs this and it will make her feel better. I couldn't even explain what I felt that morning as they wheeled us down to the surgery room in a stretcher. I don't think I have ever cried that much in my life. I don't remember praying as hard as I did that morning. As they took her off the oxygen tank, I remember handling her to the nurse & told her to hurry while she brings Isabella to the surgery table due to Isabella's low oxygen reserve .

One of the nurses escorted me back in front of the PICU where Rick & the boys were waiting.
Her surgery lasted 4 hours and they were able to fix 3 heart issues in 1 surgery and she won't ever need any follow up surgery at all.

The doors to the PICU at Stollery Children's Hospital. 

I saw the surgeon came out from the surgery room. I started crying again as he walked towards us through that long hallway. He said "Good news, your daughter did very well and the surgery was successful". I cried even more but this time, with happy tears. The other news was her electrical conductor may have been damaged or it could just be blocked (we were already told prior to surgery that it could be possible that it could be damaged).

Few hours after surgery
We know she was in good hands but it was really tough to swallow to see your child like this and still feel helpless. Her heart's been fixed! That's all should matter but I couldn't help but worry about her recovery.

We were warned that she will be intubated (on a breathing tube) for a long time because she was in so much heart failure. But guess what? On day 5, they took her off the breathing tube and extubated her to CPAP and a Nasal Canula high flow the next day. Luckily, Rick was at the hospital that night & witnessed how great his daughter have been (before he had to go back to Calgary for work).

Isabella on a high flow nasal canula (oxygen).
On the 7th day, they moved us to the ward and happily told us that she was doing fantastic. She was awake, kicking & eating well. I wasn't being cynical but after hearing some horror stories, it almost felt too good to be true.

That night, the nurse on duty told me that she will take her off her oxygen. She was still being monitored and I was the one who was scared & kept on putting it back on. She let me a few times and finally told me that she was going to take it off anyways once I leave (funny) & so she did. When I came back the following morning, Isabella didn't really need the oxygen anymore. What big of a change is that?! I was so happy. We were all happy.

On the 11th day, Rick came back to drive the boys back home while me & Isabella were transported back to the Children's Hospital in Calgary.

The boys had a chance to escort their sister inside the ambulance and see how it looks like. No, they didn't get a chance to ride it but it was an awesome experience for them. 
We were greeted back by our family (doctors and nurses) at the Children's Hospital in Calgary. Isabella had to stay there for another week to recover and be observed. She did end up with an SVT (Supraventricular Tachycardia) but didn't require an internal pacemaker. Great thing is, it's controllable by medication & has a possibility of outgrowing it in a few months. 

Isabella was on sternal precaution for about 6-8 weeks. We could only scoop her and she wasn't allowed to have tummy time. I think the hardest for me was giving her a bath & letting go of the fact that she can finally be in her tummy. 

1 month and 8 days after surgery. Her stitches has healed very well. 
Fast forward 6 months, she is now rolling over (she's always on her tummy) and her incision has healed really well. She does not have a feeding tube anymore too! Of course, we are doing our very best for her not to get sick or catch a cold but we are thankful every single day that she has healed - for good. She did come back a different baby! If it weren't for our faith, we may not be where we are now. The experience that we had may not be the greatest but it made our family stronger.

Isabella, 6 months of age.

I'd like to leave you with a Bible verse from Revelations 21:4

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

You and your child may have a rough start too but it doesn't mean you won't have a happy ending. I genuinely wish the best of health to all sick kids out there.

To good health!

In April 2013, after several tests (Holter, ECG, EKG) and 13,000 extra heart beat daily, we were told that her SVT was gone. She doesn't need any medication and would only see Cardiology once a year. What a beautiful gift indeed!!!

Monday, February 4, 2013

Can You See Me?

Isabella had to go for an eye test last Friday at the Children's Hospital. It went great! She cooperated well and the Optometrist was awesome!

The Optometrist performed different kind of tests on her. Last one was using the drops to dilate her pupil (which Isabella tolerated well). Once their pupils are dilated, they become very sensitive to light so I suggest that you bring sunglasses with you and put it on after your child's appointment.

I added those stars because she was a rockstar during the test! :)

If you have no access to Physio, here is one easy exercise the PT suggested me to do that may help your baby too to crawl. Isabella is not crawling nor in the crawling position yet so I try to practice this exercise with her everyday.

I practice kneeling with Isabella by holding her knees together under her pelvis while leaning forward onto a support (which is my hand in her chest). If you notice in the last part of this 30 second video, she has pretty much tried supporting her weight by stretching out both arms. I pat her on the arm & acknowledged that she's doing a fantastic job!

Here is the mat that we use. It is from Tiny Love and the model is Super Deluxe Lights and Music Gymini Acticity Gym. We love this product! There are so many features why we love it but first of all, the music player is detachable so you can put the mat in the washing machine - very important for us that we can sanitize this. When I detach the music player (the red lighting thing in the video above that she's looking at), I use it as another toy. Second, it folds flat so it's perfect for our little home! Every feature on this mat, from the hanging toys, to removable toys, arch and music player, texture, little sounds from the animals on the mat itself are all useful and my baby enjoys it.
Tiny Love Super Deluxe Lights and Music Gymini Activity Gym
I hope you can use this exercise too with your baby.

You know, it's so easy for us to compare our child with someone else, especially when it comes to milestones & when some parent brags how their child can do this and that. I admit, sometimes, it gets to me and I'm guilty of comparing & worrying. When I do, I always try to remember that my child will achieve that milestone no matter what, it may take longer but she will achieve it. 

So here's to believing and to a wonderful week ahead of you! 
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