wordless wednesday

her heart surgeons

Our little Phebe has always had plenty of energy, so I was wondering if/how we would notice a difference, post surgery.

Well, I am actually starting to notice some changes in Phebe already. She has more stamina now... for example, climbing the stairs used to be a bit of a labour for her, she would puff her way to the top at a relatively slow pace, however now she can climb them without nearly the puff it used to take her and at a much faster pace too. Also, on a hot day when we would get into the car, she used to sweat a lot, like it literally ran down the side of her face, however on Sunday past, after church, we got into the hot car and I noticed she just had tiny little beads of sweat, pretty much like the rest of us had before the A/C kicked in! And of course, the vibration that we used to feel when holding her, it's now gone, I imagine she's really appreciating her quieter little engine!

Yesterday we had a follow-up appointment with Phebe's cardiovascular surgeons, to make sure everything is progressing as expected. She had a chest x-ray and some bloodwork done. And indeed she is doing wonderful! In fact, she is back up to her pre-surgery weight, not that she lost much weight, thankfully... but still! And her incisions are healing at an incredible pace. The surgeons basically told us she can do whatever she wants now and not to be holding her back! Of course, there is still the 4 weeks left for her sternum to heal... and no lifting her underarm, but yeah, we can deal with that. So that's us done with the surgeons.

Our next visit will be in four weeks with her Cardiologist, Dr. Wong. He has been following us closely this past couple of weeks, while we were in hospital. He would pop in for 'social visits', as he called them and he was also in the operating theatre, when Phebe was having her surgery.

I am so in awe of this team. Really, I'm so grateful for each of them. And the compassion these surgeons have shown our family, it's just so obvious how much they love their jobs and the children. Yesterday, Dr Maharajh - the Chief of Cardiovascular Surgery, who performed the intricate part of Phebe's heart surgery, kissed the top of her little head. Melt my heart. ♥

We're so thankful for Dr. Maharajh and Dr. Shanmugam and their incredible God given skills. These two amazing men fixed our little Phebe's heart.
Don't they have such a quiet strength about them? They are so warm and caring. Such kind men.

one week ago today...

This day last week is already such a distant memory.
However, there are so many emotions wrapped up in this day, I doubt very much that I'll ever forget it.

Today I asked Phebe if her heart felt better and she replied: "I like it heart fixed!".

Love this girl of mine, I wish I had half the courage she has.

a successful surgery!

You created my inmost being; You knit me together in my mother’s womb.
I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.
Psalm 139:13&14

Firstly, let me just say... Praise the Lord! Our prayers were answered in a BIG way, to God be the glory.

Phebe had her surgery on Thursday 30th May and was discharged on Monday 3rd June - 4 days post-surgery! In fact, she took her first cautious steps just 24 hours after surgery on Friday 31st May - where she walked to the toilet for a pee - she was having none of this diaper stuff! Her progress was nothing short of a miracle. I have to admit though, she got a lot of her tubes/wires/lines/catheter taken out just before she took those 8 steps back and forth to the toilet and we knew she was in a lot of pain while they were being removed... she was exhausted and promptly fell asleep! By Friday evening she was given the go ahead to be taken from the intensive care unit to the surgical ward.

On Saturday the doctor's came around, they were amazed with her progress and said she was in a position that she could almost have went home, but because she was just 48 hours post-open-heart-surgery they just didn't feel right about sending her home so soon! She walked to the playroom and thoroughly enjoyed her time there, she spent a good part of the day out of bed, she wanted to sit on the seat, she wanted her noodles... basically, there was no stopping her!

By Sunday she was marching around the ward, chatting and showing off her new pajamas to the nurses, she was even trying to CLIMB! I was amazed with her progress.

On Monday all her monitors were turned off and she had her final ECHO, x-ray and bloodwork... I say final, but in fact this ECHO is her new baseline, her new normal, with her fixed heart! We also gave her a little bath, which she loved. We were later discharged, 4 days post-surgery!

God is so amazingly good.

Phebe had so many friends and family praying for her, we couldn't have gone through this without them, we are so thankful for each of those prayers. The incredible surgeons and team that looked after us during our stay at CHEO (Children's Hospital of Eastern Ontario) are nothing short of amazing. I am just going to put the names down here, so some day when she's older, Phebe will know all those who loved on her and made this possible, especially those surgeons and their incredible God given skills. We are so blessed that they are part of Phebe's story: Dr. Maharajh & Dr. Shanmugam - the two surgeons that completed the surgery. Jocelyn & Andrea - the surgical nurse and social worker that kept us calm and updated prior to and during surgery. George & Marissa - the two nurses in the PICU unit that were with us during those first two days of recovery. And then there were many other nurses during our remaining days in the surgical ward (5 East, Room 3): Dianne, Rebecca, Shannon and Eleanor.

Now a little background... the 5mm hole they went in to fix actually turned out to be a 10mm hole and there is still a small leakage now, after surgery. We knew this was a possibility, because of the stitching around the patch. This leakage is very minor, at this stage it is considered a heart murmur, however there is still a high chance of probability that it will fix itself over the next few weeks. The scar tissue that forms around the stitches (that were used to sew the gore-tex patch on the hole) may close over where the leakage is. Also, this is definitely not a reason to go back in and fix it again, the only difference this slight murmur will have on her life is when she visits the dentist, she will need to take an antibiotic prior to the visit.

We are so relieved this surgery is behind us and we can't help but praise our little girl, for her courage and bravery. We were told when they woke her up after surgery, she was a little hysterical, asking for us... so they sedated her to calm her down. When we were finally able to see her, she could hardly keep her eyes open from the sedation, but you could tell how glad she was to see us. She would come in and out of reality, touching us, holding our fingers, appreciating us running our fingers through her hair. It was so special. This whole experience has created a very special unique bond between us all. She trusted us every step of the way, she leaned on us and I know she clung to our love and care even more than ever.

Here are some pictures (taken with my little point & shoot camera) to document her time in hosptial:

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Thursday 30th May : Pre-Surgery

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Thursday 30th May : Post-Surgery

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Friday 31st May : Day 1 Post-Surgery
Stomach tube out, electrical wires out, neck line out. catheter out and her first cautious steps to the toilet.
She was discharged from the PICU and taken up to the surgical ward, later that evening.

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Saturday 1st June : Day 2 Post-Surgery
She loved being reunited with her sister, that's when we saw her first grin of happiness.
We even made it to the playroom today. And she got to eat her favourite comfort food, Mr. Noodles!

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Sunday 2nd June : Day 3 Post-Surgery
There was no stopping our little fighter, she even went as far as attempting to climb today!
She also marched around the ward, chatting with the nurses and showing off her new pajamas.

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Monday 3rd June : Day 4 Post-Surgery
She got her final ultrasound, bloodwork and x-ray and we were ready for home.
Not before a bath and a final goodbye to Dr. Shanmugam, who she adored. He teased her a lot about Tigger & Foxy, which she loved!

Thank you so much for all your prayers and love, it is humbling how many of you have reached out to us in the past week.

[ the flickr set is here ]

surgery tomorrow

We met the surgeon that will be completing Phebe's heart surgery, three weeks ago, on May 3rd.

He walked us through every step of the surgery. Every little detail. The pros. The cons. The reasons. He made us feel so confident, so sure, so at peace. We know this is the right thing.

And yet as the day draws closer, emotionally, it gets harder. We need more than the surgeons words for peace of mind. We need our Heavenly Father's comforting words and to feel His arms around us, bringing us the peace that only He can. We know she is in great hands, and yet it is such a human thing to fall back on our own emotions. The Lord has kept her healthy and well in these weeks running up to her surgery, which is a miracle in itself. Lilah and I have both had horrible colds, sickness is going around and yet Phebe has been preserved from it all.

Tomorrow is the big day. Her surgery starts at around 9am and lasts approximately 5 hours. Your prayers mean so much to us, thank you.

her second cardiology appointment

Yesterday our Phebe girl had another appointment at the Children's Hospital for a follow-up echo and ecg.

During Phebe's first appointment, on January 9th, she had each of these tests done which showed she had a 5mm vsd. Actually, this time we learned that the vsd is 5mm at one side and 9mm at the other side. Her heart has also become more enlarged since her last visit. So now we know for sure, she definitely needs this surgery.

She did great during both her tests. It sure is a long time for a 2 year old to lie still - especially during the echo. And I can tell it's uncomfortable and at times painful for her, but she is such a happy girl - she just grins and bears it. The staff are wonderful and in the words of her Cardiologist: "She's going to have the surgical team wrapped around her fingers!". Let me tell you, that is the truth! She has that way about her, her grin and sunny disposition can buy just about anyone over!

Did I mention she is the 90th percentile for height?! She's grown 3cms in the past two months! Our peanut maybe isn't going to stay a peanut for long! She still looks so tiny though, especially beside Lilah! Her sickness in the past few months has held her back on her weight, unfortunately. She's back down to the 10th percentile. She does love her food though, but during sickness she regularly gets diarrhea and sometimes throws up. I think it might be the side affects of the antibiotics.

We also got to meet her surgical nurse, who I have chatted on the phone with several times already. She is amazing. We are so very thankful to have this team rallying around our little girly.

sickness... and a surgery date

My little Phebe girl is sick again.

What starts out as a simple cold so quickly escalates into a deep chest infection. Today she woke up from her nap feverish and throwing up. I got an emergency appointment with our GP - so thankful for amazing medical care. She is on antibiotics again, 3 antibiotics in the past 3 months - that ratio is a little unsettling for this Mama. But unfortunately for Phebe and her heart condition, medicating her is needed right now to take every precaution necessary - even though the doctors admit that they are probably overmedicating her.

Through all of this, I'm just so thankful for Phebe's attitude during sickness, nothing gets our happy girl down. Our little sweetness has lived with this kind of sickness since she was born (we know this from the medical papers we got at referral) and she really doesn't know any different. Sometimes I wonder how much care did she get when she was sick in the orphanage? It's such a hard place for my mind and heart to go.

But here's the good news. God knew I needed this call today. The (Cardiovascular Surgery) nurse called this morning and my baby girl now has a date for surgery - May 30th, all being well. Yes, that is the day she'll be getting her little 5mm hole closed up and it'll be like a fresh new beginning for that little heart of hers. I so want my girly to be healthy and to live her life with less sickness. Of course, I'm human too, I'm worried and emotional at the idea of my tiny girl going through this surgery.

But my Father in Heaven, He gives me strength in my weakness. Today, he gave me this passage, how He knew I would need it...

"He healeth the broken in heart, and bindeth up their wounds" (Psalm 147:3)
"He telleth the number of the stars; He calleth them all by their names" (Psalm 147:4)
"Great is our Lord, and of great power: His understanding is infinite" (Psalm 147:5).

How great is our Lord! He is going to heal our beautiful little girl's (broken) heart and bring her comfort and healing. Not only does He know each of the countless stars by name, but each one of us by name too, including our little Phebe. How incredible is our God! His power and His understanding is something I can lean on, not only in my moments of weakness, not only in this life, but throughout eternity. He'll draw near.

her sweet little heart needs surgery

We've been together four months now. For real!

Four months of loving this little monkey has rewarded itself in ways that stagger me. She is such a sweet lovable girl. She is the first to come running to me and wrap her little arms around my legs for a hug. I doubt if there is a better feeling in the whole world, than that. And then there's the snuggling into my neck when I carry her up to the crib for her midday nap, along with the tiny little pursed lips, waiting for that kiss when I lay her in the crib... Of course, I always have to kiss Tigger first, but I'll take what I get!

She's a happy go lucky girl, she always has a bit of fun up her sleeve and she lives her happiness out loud. It's one of my absolute favourite things about her. She also has a mind of her own, selective hearing and can be all out stubborn - if she so pleases. But I wouldn't change a thing about her. Well, most days! Ha!

I absolutely love her in bunches.

Today we heard back from the head of Cardio, Dr Wong. Have I mentioned he is amazing? Honestly, he just has this way about him that calms me in the best ways possibe. Anyway, he called to tell me that the 6 Cardiologists in today's meeting, all agree that Phebe's heart has been under strain for long enough and they want to close the hole in the next 4-6 months.

I am so VERY thankful the Lord has given us time between bringing her home and before this surgery. Time to show Phebe she is loved, time for us to bond together, time for her to trust us, time for her to realize we are a family and none of us are going anywhere, time for her to understand us English speaking folks, time so she can communicate with us. Thank you Lord.

I know Phebe's strength, her happiness and her gregarious easy going personality is the perfect fit for a patient. And my sweet little sensitive Lilah will be on the sidelines doing all the worrying for her - Lilah sure fits the caring big sister role, perfectly!

Every now and then, reality hits, and my Mama emotions get the best of me. It's just the love I have for this child - I don't ever want her to hurt. But I am focusing on the positive - God gave her to us because, well, most of all, she's our daughter. And she and her Baba will be able to exchange heart surgery stories and compare their scars! Not to mention, we have the best healthcare possible, we have some of the best Cardiologists, we even live 5 minutes away from the Children's Hospital! And the best part, this surgery is going to give her the best quality of life.

God is so good.

first appointment with the cardiologist

Phebe had her first appointment with the Cardiologist at CHEO today. She had three tests - a chest x-ray, an ECG and an Echocardiogram.

The somewhat short version is that Phebe has a 5mm (medium sized) hole (vsd - ventricular septal defect) in the lower chamber between the left and right ventricle of her heart. Unfortunately, the blood escaping through this hole is causing her heart to be enlarged.

Right now, it is hard to gage these results, because we have no medical history or past tests to compare these results to. Was the heart originally larger and is it decreasing in size as she grows? Or is it the opposite, is her heart becoming more enlarged as she grows? Those are the questions right now. If we knew the answers, the course of action would be a lot more straight forward.

There is a test they could do, an MRI of the heart, to figure out the amount of blood escaping through the hole, however, that would mean our little girly would have to go under a general anesthetic... and the Dr said, even though this would help him figure out what was going on, there is a high possibility that (after that test) she will need the open heart surgery anyway. So he is hesitant to know if this is the best option. He doesn't want to have to put her through any more extra procedures, especially ones that involve a general anesthetic. And especially since, as of right now, the open heart surgery is a high possibility.

Anyway, all that said, he feels Phebe's case is a little tricky and has decided to take her file and present it at a board meeting on Friday. This meeting includes 5 other cardiologists and 2 cardio surgeons. He wants input from other cardiologists in order to make the right decision. I am thankful that he is a smart man and wants the best for our girl, enough to get other educated opinions before making a decision. And I know that God is in control and Phebe is in the best hands and care possible.

For a 2 year old with a vsd, Phebe is growing very well. She is in the 75th percentile for height, she went from the 5th percentile to the 25th percentile for weight, in just 7 weeks! However, unfortunately with her sickness over the holidays she lost a fair amount of that weight gain. But the good news is, she can put on weight and it's only because of her two years spent in the orphanage that she was 'under target' for weight. The other good news is that she has no outward effects of this vsd at all, no blueness, no loss of breath, etc. and for that we are very thankful. However, there are issues that will transpire if her heart continues to enlarge - these issues would manifest themselves more when she becomes a young adult.

The Dr also mentioned that having the surgery at an early age would be better - she wouldn't remember much, recovery and healing would be easier and her scar would disappear before she becomes a self-conscious teen! Not that I can ever imagine Phebe being self-conscious, she has such a beautiful happy easygoing spirit. At the end of the day, we want Phebe to have the fullest life possible and if that means having surgery, well we are at peace knowing we will have done everything to give her that.

Anyway, that's as much as we know right now. Dr Wong will be calling us on Friday to let us know what conclusion he and the board members have come to and we will move forward from there.

Peace I leave with you; my peace I give you. I do not give to you as the world gives.
Do not let your hearts be troubled and do not be afraid. John 14:27