Martin had his third open-heart surgery already (Fontan operation) in Charleston. To make a long post short, the third surgery was a success and we are finally back home safe and sound. Martin is doing wonderful. His oxygen saturation numbers are consistently in the 90s and his mood is much better (more on that). We are so grateful to finally be back home because out of all our medical trips to Charleston, this last one was probably the hardest and the most taxing. This is why, apart from short Facebook updates, we were unable to write any posts on this blog until now. We apologize for the lateness of this post.
To recap, Martin was born with a severe heart defect called Hypoplastic Left Heart Syndrome(Gracie, in contrast, has Tetrology of Fallot). Essentially, he was born with half of a heart. Children with this heart defect normally undergo three separate open-heart surgeries that are performed at varying stages of a child's development. It was finally time for Martin's third. He was the right weight, the right age, and his oxygen levels would frequently dip into the lower 60s especially with activity.
We were facing this final surgery with considerable dread mainly because since Martin is now older (2.5 years old), he would be more capable of understanding and expressing his fears, anger, and anxieties. As it turns out, this is indeed what made this last surgery the most difficult for us. The surgery itself was, thankfully, successful. But the days and weeks after the surgery were incredibly challenging. Having both arms strapped to the bed post-operation, having 3 chest tubes and 2 IVs in his neck and hand, and even just being confined to a bed for the better part of three weeks was torturous for him. To make things worse, the stronger pain medicines actually had a horribly adverse affect on him and so he could only take Tylenol near the end when removing the tubes from his chest.
All of these factors along with constant irritation and sleep deprivation drove his frustration to such levels where he would become inconsolable and would verbally and even physically react badly toward Jamie and myself as we did our best to show him love and comfort. Even though we are fully aware that his physical discomfort and various medications were affecting his mood, nevertheless, this was a very hard and hurtful time for us as any parent can imagine. Painfully hard. So that by the time we were finally discharged we were exhausted and more than ready to come home. The reason why it took so long to be discharged this time was because of a prolonged "pleural effusion" problem which occurs in many patients after a Fontan operation. Our total stay was 3 weeks, but it seemed like an eternity.
The bottom line is that, to our great relief, we are finally home and Martin has been enjoying a good night's rest in the quiet and comfort of his own home. He is so much happier now and the "old" sweet Martin has returned to us! He's a remarkable boy and has bounced back from this surgery with amazing resilience. We are so relieved that this last chapter in Martin's scheduled surgeries is behind us. It feels as though we have climbed a great mountain and looking back we are amazed at how far we have come. As difficult it has been, we have learned many important lessons along this journey that it seems can only be learned in extreme pressing trials. We all know this in our head, but it was drummed into us almost daily how very little control we have over a great many things in life. We have learned to trust more in God's gracious providences. It is not a fatalistic passive attitude that we have, but rather, a restful trusting posture. We're not perfect in this area of patience. Not by a long shot. But we are learning. And during the hardest times of Martin's frustrations and our attempts to show him love, it reminded us of how often we must grieve the heart of the Lord with our rebellious thoughts and our sinful words. If we, as parents, can be deeply hurt by those we love and care for, how much more true it must be in the spiritual realm. When we sin, it makes us pause and think of how our sin must hurt and grieve our Heavenly Father who continues to show us unconditional love and affection. I hope this truth can give us enough sense to hate sin with a greater passion.
We are thankful for the prayers and love of our family and friends. Every kind word is received and very much appreciated.
Martin's Third Surgery PhotosMartin's third open-heart surgery (Fontan Procedure) in Charleston, SC.
It's been a number of months since our last post. Life has been busy. The children are growing and Martin and Gracie are like two peas in a pod -- inseparable. Gracie is continuing to grow stronger and she learns so much day by day. Martin is a...[ abbreviated | read entire ]
Martin's Third Surgery PhotosMartin's third open-heart surgery (Fontan Procedure) in Charleston, SC.
Saturday: Say cheeese! Gracie puts on her 'funny face' for the first time post-surgery. She is feeling a LOT better as they let us take a walk around the halls without the nasal cannula! Poor girl didn't want to go back to her room but hopefully the doctors will see her doing so well and discharge us soon. Here's hoping for tomorrow! We can't wait to see how she does when she takes a breath of fresh air! We take so much for granted.
Sunday: Good morning to the sunshine. This little spot on our hospital floor is becoming Gracie's favorite place to look out the window into the clear, blue outside. This morning she is doing much better still. They let us take off the nasal cannula again and she's still in the low 80s. A good Sunday morning it is. Maybe today she can breathe the fresh air outside...
Discharged Sunday and back with her family! Gracie's color is looking really good and she will only improve as she grows and gets stronger.
We were discharged on Sunday! We are so happy to finally be back with our family! We missed them enormously and we were more than ready to be back together again. We are still in Charleston and will spend the next few days letting Gracie rest and...[ abbreviated | read entire ]
She is worn out but wakes up every few minutes to make sure her favorite "Martin video" is playing even though she's dozing off to sleep. She must've played the same video hundreds of times today. Doctors got a kick out of it.
Gracie getting an echocardiogram. The technician says what Dr. Bradley did is a work of art. It's all a bunch of colors on the screen to me but he insists that it looks so clean and perfect. What a blessing!
Another day at the hospital. Gracie had a big X-ray done this morning. It was our job to keep her "still" for the 10-minute scan. The size of this scanner is intimidating for anyone let alone a child!
We are still in the hospital, in the wing of the Children's Hospital affectionately known as "The Floor." Any pair of parents who have both tried to stay overnight in one of the rooms will know that it is aptly nicknamed. Well, today is Saturday...[ abbreviated | read entire ]
No more BLUE fingers! For the first time in her life, she has healthy, pink fingers! Oxygen saturation in the 90s and probably settle into the 80s. Much better than 40s!
She's a survivor! She came through the surgery and is doing really well with recovery so far.
Dr. Scott Bradley is Gracie's amazing heart surgeon. We are very grateful for skilled surgeons.
The surgery was a success! Yesterday was a great big day for Gracie. For the first time in her life she no longer has blue fingers, blue lips, or blue toes. She is a pink little baby girl! That was the very first thing we noticed when we finally...[ abbreviated | read entire ]
Our sweet Gracie -- a few days ago at her pre-op at MUSC. For a "heart baby" she really is all heart. Waving and blowing kisses to everyone including the pictures of people on the computer screens.
On our way to Charleston! Deja vu, all over again.
In Charleston. The day before Gracie's big surgery.
We are back in Charleston. Actually, we were back in Charleston just a few days ago for Gracie's pre-op. It was at that time we had the opportunity to meet with Gracie's surgeon, Dr. Bradley, to get it directly from him what he thinks will need to...[ abbreviated | read entire ]
Deja vu .. all over again. But this time with Gracie.
Getting ready for the heart cath. Gracie has a sweet and friendly spirit normally, but not so much after the procedure.
Recovering after the 6-hour heart catheterization.
Gracie had another visit to MUSC for a heart catheterization. We were here almost two years ago for the first time with Martin. Walking down those halls felt like a total repeat of history. After 6 hours in the cath lab, the doctor informed us...[ abbreviated | read entire ]
Gracie is beginning to understand what it means to be a part of a family. She loves the kids. And the kids love her.
Getting on the plane to head back home -- finally!
We are home! We finally made it back home late Thursday night after a very long trip from Guangzhou to Shanghai to Detroit to Greenville. Gracie did well on the 3 flights but was understandably very tired and so Jamie had the arduous task of...[ abbreviated | read entire ]
The wonderful lady who helped us get the medical expedite and who was our guide in China. She is amazing!
Severe heart condition. Either truncus arteriosus or tretralogy of fallot.
A picture of the other adopting families in our Bethany group in Guangzhou.
Today is our last day in Guangzhou, China. When we arrived on Saturday night, it was late and we were exhausted. The next day we were at the medical exams. And just yesterday we had our US Consulate appointment. Today we are waiting to receive...[ abbreviated | read entire ]
Mommy getting a warm hug from Gracie at a local Children's Park in Xi'an.
She adores her Mommy!
Our little Gracie's oxygen levels are very low. Today was the lowest we've seen at 61% according to the pulse-oximeter (normal levels are in the high 90's, Martin's levels are in the 80's). Pray we can make it back home safely especially on the long, stuffy 14-hour plane ride from Shanghai to Detroit. It'll be wonderful to be back home.
Today, we are leaving Xi'an, which is in the Central region of China, and are heading to Guangzhou, which is in the Southern region. This means three things. First, Gracie will be leaving her home province (Shaanxi) for the first time. Second,...[ abbreviated | read entire ]