A verse that was precious to our family regarding Martin. Out of context, but precious nevertheless. We tell our children that Martin has a broken heart, and the Lord is near.
First of all, I think it is necessary to express deepfelt gratitude for all who have called, written, and prayed for us. We are thankful for our family and friends -- both near and afar. I know it always sounds so cliche, even as I write this. But how else can I express my true gratitude for your prayers and concern for our family? Thank you.
We have named him Martin Alan Sang-Hoon Lee. Normally we wait until the birth before finalizing on a name, but we felt it would be easier to pray for someone by name.
We have received word just yesterday that our next ultrasound appointment has been scheduled with the cardiologist for next Thursday, October 13 at 8:30am. We are very much looking forward to that visit as we feel that a specialist will help us nail down more absolutely the current state of affairs. Over these past few days, we've looked over a number of websites that deal with the HLHS (Hypoplastic Left Heart Syndrome). It's very depressing. Especially the YouTube videos. I don't like to think of the awful procedures that he will undergo. It's plain awful. And if it can be avoided, that would be wonderful. This is no short-term situation. Doubtless, it will change his entire life. Needless to say, we have been praying for the Lord to heal Martin according to His will -- as I know some of you have also been praying. We will continue to pray this way until it is clear that it is not the Lord's will. From now until the next ultrasound appointment, little Martin is growing in the womb and perhaps his heart is becoming stronger. Each night, I have started to play some uplifting hymn music directly into Mommy's tummy. Who knows? Music perhaps has a unique way of strengthening the heart and inner spirit like nothing else. If he's anything like his father, music can only help -- we hope. Whatever the outcome, it is clear to me that the Lord will do what is best for us. He knows what we need, better than we know ourselves.
For those interested, I thought it would be helpful to make note of some of the more salient points of this HLHS syndrome:
Hypoplastic left heart syndrome (HLHS) is a congenital (present at birth) syndrome, meaning that the heart defects occur due to abnormal underdevelopment of sections of the fetal heart during the first 8 weeks of pregnancy.
When the chamber is small and poorly developed, it will not function effectively and cannot provide enough blood flow to meet the body's needs. For this reason, an infant with hypoplastic left heart syndrome will not live long without surgical intervention.
Hypoplastic left heart syndrome occurs in up to four out of every 10,000 live births.
In hypoplastic left heart syndrome, there may be abnormalities of other organs, such as diaphragmatic hernia, omphalocele, and hypospadias.
Your child will most likely be admitted to the intensive care unit (ICU) or special care nursery once symptoms are noted. Initially, your child may be placed on oxygen, and possibly even on a ventilator, to assist his/her breathing. Intravenous (IV) medications may be given to help the heart and lungs function more efficiently.
Series of three operations that are done in stages: the first one shortly after birth, the second at about 2 to 6 months of age, and the final at about 18 months to 4 years of age (these stages may vary depending upon the individual patient).
After surgery, the chest is often left open in most patients, but still covered with sterile drapes. The open chest prevents compression of the heart by the rib cage. The chest is then closed several days later, when the heart has had a chance to adjust to the new circulation.
While your child is in the ICU, special equipment will be used to help him/her recover, and may include the following: ventilator, intravenous (IV) catheters, arterial line, nasogastric (NG) tube, urinary catheter, chest tube, heart monitor.
Your child will be kept as comfortable as possible with several different medications; some which relieve pain, and some which relieve anxiety.
Infants who spent a lot of time on a ventilator, or who were fairly ill while in the ICU, may have trouble feeding initially. These babies may have an oral aversion.
Pain medications, such as acetaminophen or ibuprofen, may be recommended to keep your child comfortable at home.
Without intervention, most infants with HLHS will not survive longer than a few days to a few weeks. The series of surgical procedures is most often recommended over heart transplantation.
The first-stage procedure poses the highest risk for poor outcomes and death. Survival rates are higher with later stage procedures.
Infants and children who undergo the staged surgical procedures will require special care and treatment to support growth and nutrition. These children often have diminished physical strength as well as slowed developmental progress and will need support.
We covet your prayers.
But I should hasten to add that "prayer-fatigue" can easily set in for something as long-term as this. Please don't ever feel obligated to keep up with our situation. We all have our own lives to live, our own burdens to bear, and our own families to raise. If you happen to remember us, from time to time, we will always appreciate your praying for us.
This situation has definitely sobered us up. Made us thankful for our children. Made us thankful for our own health which we take for granted every day. I hope little Martin's condition will help us all be a little more thankful every day.
Dr. Cairns reminded us of this quote from Martin Luther: "Where we cannot trace God's hand, we can trust Him." Fitting reminder from a great preacher quoting the great Reformer, both of whom we had in mind when naming our Martin.
"I will bless the Lord at all times -- His praise shall continually be in my mouth." Psalm 34.
Martin Alan Sang-Hoon LeeHere are some ultrasound photos of our newest baby boy!