“…but let your adorning be the hidden person of the heart with imperishable beauty of a gentle and quiet spirit, which in God’s sight is very precious”
Apostle Peter
For two weeks and three days John Lee has lived with his chest wide open. We were getting familiar with this wild unusual look he had going. I had never considered in my wildest dreams that I would look at my child, or anyone, and admire his/her heart beat visually. It is amazing and this is what we have just been experiencing.
Today the chest was closed. We will not miss this episode, yet we will marvel at what modern medicine is able to accomplish.
Overall he doing well.
John Lee is recovering from the procedure from Saturday morning. They were able to dial back on his sedation, after the operation, so he has been awake most of the evening. Because his diastolic blood pressure was low, they also stopped the diuretics—they have since resumed since the blood pressure has picked back up.
Resting
As mention the last post, the next milestone is to remove the breathing tube. Each passing day we are learning be patient and trusting. John Lee has been tremendously amazing in his response to what he has gone through. What a story he will have to tell!
His heart is special. We hope he will know and understand this fully.
Which of you by taking thought can add one cubit unto his stature?
Jesus the Carpenter
In a little one month old baby’s time everything goes quickly. It is amazing what can happen in a matter of hours.
I drove back home to Temecula on Wednesday, and got back to Stanford last night, Friday. I did not miss much, at the same time a lot has happened.
Thursday night Amy told me that John Lee was ready for his chest be closed. His doctors were talking about ‘sometime’ the next day, Friday. Friday morning came and we were certain that the procedure would be done at some point that day.
I had planned to start driving back Friday morning-ish. At around 11 AM Amy called me and said the did not have a surgeon available to do his procedure. She was frustrated.
We are certainly ready for the next step. John Lee has had his chest open long enough. At the same time we are thankful that they are able to ‘kick the can’ along. It means that he is doing well. Also understanding that there are limited resources, we appreciate the work they are doing for babies.
I am with him as I am typing this. They are currently prepping him for the procedure which has been scheduled for 8:30 this morning.
My trip south coincided with grandma Sue coming up. She came with Tanya Haynes. Henry is over the moon.
Thank you for not ceasing to pray for John Lee. We are encouraged each day and looking forward to the next phase, which is removing the breathing tube.
“Perfection is attained by slow degree; it requires the hand of time.”
Voltaire
John Lee got the washout today. He did very well. His chest is doing well–no infection. It looks like we will play the long game. He is still swollen, but making progress steadily. Tonight I observed that his head has shrunk considerably.
His attending physician told us that they are watching for Arrhythmia. It may be caused by the wires connected to his heart, so he is not on any medication for it.
“Their goal is to take it at his pace.”
So this is where we are. Due to the swelling it does not look like closing the chest will be happening this Wednesday. During the washout they tried closing and they were sure that he is not ready.
His head is considerably smaller
In other news, grandma is coming back this Wednesday. She is coming with a great friend of ours. We are excited. Henry is over the moon. He is asking by the hour when she will be here.
This past week I was actively practicing setting expectation. With Henry Gray. When I outlined a plan for him such as—you will practice your numbers from 30 to 40 then you can get some screen time. He easily meet his goals. When the expectations are set we have an easier time getting through processes.
At the hospital we have been given highly optimistic expectations a number of times. When this expectations are not met, we end up feeling down. Lately we have been setting lower expectations when we are getting new of a plan.
Meeting expectations too
John Lee has been doing great releasing the fluid build up from the surgery. When this started happening the doctor were optimistic and started talking about closing his chest the next day. As usual the next day was put off to the next day or two. It was Thursday night when when he started passing the fluid positively. Initially my reaction was to expect for a Sunday closing of the chest instead of Saturday.
It is Sunday and we just heard from the attending Physician. He said:
“He is looking good. At this point it would be harder to close his chest. We need to get more fluid off of him. If we can get 200 off today, another 200 tomorrow and same the day after it would make it easier to close his chest. We are at a higher risk of infection, if we need to we will do a chest washout to decrease that risk. Otherwise the best course is to ride the 200-off wave until he loses enough fluid. If the risk for infection gets higher, or his blood pressure drops again then we will move to close his chest.”
The nurse translated this as to saying, the closing date is tomorrow, but if they can push it we will be looking at a later day. This would mean that they will perform the chest washout tomorrow. We are looking great. He is still passing fluids.
They had to stop the diuretics last night and give him more fluid due to lowered blood pressure. He’s back on the diuretics again.
“If it were not for hopes, the heart would break.“
Thomas Fuller
A month ago today John Lee was born. It was a crazy day. If you did not read the first blog, here is a recap. I was getting ready for my first final. The exam was at 8:30 AM, and Amy’s water broke at 4:00 AM and the hospital was 56 miles away. When we got there, they settled Amy and started prepping for delivery. I left to take my final at 7:30 AM.
I was back at the hospital around 11:00 AM and John Lee was on his way. Amy depends greatly on her mom (she is a registered nurse) to interpret medical lingo. At this instance she was in Texas, returning that night. Her sister, Sarah, was at her side through entire delivery and more. We had family from Arizona, Dwayne and Nancy; Norman and Lisa Gomez were also outside when Amy began to push at around 2:15 PM. Amy pushed for about 15 minutes and John Lee was here!
Welcome John Lee
They was a NICU team in the room ready to take John Lee, we knew the complications first hand. This was the case. We were only able to see him in the room for about 10-15 minutes before they took him away. Amy did not get to see him after that until the next day.
In the Cardiac NICU after birth
When we found out that we would be in the hospital long term, the hospital helped us go on the waitlist at the Ronald McDonal House (RMH) in San Diego. Since John Lee came early we could not check in at the RMH. Amy was discharged two days after delivery. We learnt that you could pay a nightly rate to stay in one of the hospital room. We chose this option. So for three more night our hospital room was in ‘hotel’ state. During this time I was taking finals to complete my course work and degree.
Breathing tube gone
Meanwhile John Lee was doing well, they had removed the breathing tube they had put in him right after birth. He was almost breathing on his own. We thought that we may even be able to take him home and wait for surgery for a latter date. This did not last long though—they discovered that he was pushing too much blood to his lungs, and not enough to the rest of the body. This was opposite of what we thought would be happening. In no time the breathing tube was back on and they sent him to the Cath Lab promptly. The Cath Lab results told them a different story, and the determination was made to send him Stanford University for further expert care.
So here we are. It has 22 day since we have been at Stanford University. John Lee is month old and has had surgery since. He is critically sick from the surgery—to get better. The last week has been stressful to say the least. It is not easy to watch your little baby lying, swollen with an open chest and lines coming out of his body feeding to all sorts of machines.
Before SurgeryAfter Surgery
We were warned!
It is still not easy!
This few days have been lighter. We have witnessed the stubborn fluid leaving. John Lee has been peeing at least every hour. He has been responding well to diuretics. He is smaller than he has been in the last few days. We are lighter in spirits. As I am writing this the doctor are considering closing his chest in the next 24 hours. Throughout the day they have been positive. We have noticed changes in his structure and outline. We are ready for the next step.
Big brother stuff
We hope you know that we are encouraged by your prayers, comments and messages. We are encourage by family visits and all other support. Most of all we are encouraged by each other. Henry Gray is a delight to be around. We are fond of what he has been saying about his little brother. At night, he asks to pray for him and read ‘dadda book (the bible).’ He is talking more and more about hugging and squeezing John Lee. We cannot wait to see this.
A month old! I cannot believe it. Time is flying too fast. As each day passes by we are thankful for each other and our little men. We are thankful for our family at large…we are thankful for you.
“…Behold, the husbandman waiteth for the precious fruit of the earth, and hath long patience for it, until he receive the early and latter rain.”
James the just
When they first told us something was wrong with our baby’s heart we knew it was going to be a long hard road. But we had no idea it would be this hard. Being away from home, dealing with postpartum hormones, and watching our child lie in a bed full of tubes not being able to snuggle him has been unbelievably hard. The stress is heavy.
And this waiting game isn’t helping.
Yesterday was an especially hard day. We went to the hospital excited to see John and hear about the progress he had made. Our hearts were fully expectant of good news. But we were sorely disappointed.
His swelling has increased. He had stopped responding to the diuretic that was reducing the swelling. His arterial line, that was just put in over the weekend, was not working. These were just a couple of the different things that were not going well. All the steps they were taking to move forward had come to a halt. Our hearts dropped.
His swelling is what is holding up the healing process. And the longer he is open the more risk of infection. We started asking people to pray.
Today we came to the hospital, still hopeful, but weary. Amy walked in and saw his feet. The swelling had gone down! The nurse said John Lee’s body was responding to the diuretic again! Not only was it responding, but they were able to give him the maximum dose! They haven’t been able to do that all week. He is still very swollen, his head was actually slightly more swollen, but we are seeing progress and he is handling it so well. Pee has never been so exciting!
When asked about the arterial line, the nurse said it works great. No issues! The doctors said they believe he has turned a corner. All his numbers and his body’s response to medication is encouraging the doctors and making us ecstatic. We are so over joyed! God is so good!
Tonight I walked in at 10:45 PM. While his attending nurse was giving an update I could tell, visually, that his swelling has gone down. Moments later the attending physician walked in and observed the same. When she left she said the team will be discussing closing John’s chest this weekend. One step closer!
Thank you for staying the course with us. We appreciate your prayers, time you spend commenting, checking on us and wonderful gifts.
John Lee is exactly 4 weeks old today. I would love to hold him. Yesterday I was talking with Henry about what we are looking forward to do when John Lee is better. We agreed that we want kiss him, hold him, hug him and give him the squeeze. Henry does an impression of what it looks like to squeeze John Lee—it’s hilarious. So we have been praying for John Lee to get better.
It’s 10:48 PM. I put Henry to sleep over an hour ago. I am now visiting with John Lee. The last time I was here was early this morning, for my routine ‘checking in.’ Today has been much different.
It has also been a week since the surgery. After the surgery we were told that they would close his chest last Friday. So we are learning that it is not as it seems. We love optimism, but too much of it can turn one into a skeptic when there is nothing to show for it.
Since the surgery there has been a blood clot in his right arm; the arm was turning purple. It was distressing. His arterial line stopped working so last Sunday they installed a femoral line. The significance is that there is higher chance of infection with the new femoral line.
The good news is that some of the swelling is gone, but not much to sing about at the same time.
Meanwhile, Henry is homesick. He hasn’t been himself lately. So we have been intentional in spending time with him. It is hard to maintain the routine we had so we are improvising but keeping some form of routine with him. We took him for a train ride in the red woods today. He had a grand time.
Each day has its challenges, maybe subtle but still challenging. We remain hopeful and looking forward to the day we will hold and squeeze John Lee.
“For, brethren, ye have been called unto liberty; only use not use liberty for an occasion to the flesh, but by love serve one another.”
Author of Galatians
Everyday is challenging, but is also an opportunity; it depends which way you want to take it. It may be hard to see the opportunities when facing hard times. Some times we need a different perspective or re-alignment.
Our little fighter
In last update we talked about waiting. The circumstances have not changed much. We are still waiting for John Lee’s swelling to fall to an acceptable amount so that his chest can be closed. His organs continue to perform well, therefore the doctors are happy with the progress. They told us that each case is different, but it typically takes 7 to 10 days for the closure. Each child reacts differently the surgery as such the child’s healing is what determines how fast the closure would be.
Meanwhile we have gotten to know some of the families here at the Ronald McDonald house. Each family is here because of a sick child. One family’s child in particular had the same procedure as John Lee, but has since had other complications. We sharing hope and encouraging one another while we face each day. Please keep the families and the children in your prayers. There are opportunities to reach out to other families while we are here.
“For I was my father’s son, Tender and only beloved in the sight of my mother.”
King Solomon
Right after John Lee’s surgery the doctors were optimistic that his chest will get closed this weekend. It turns out that the optimism is not realistic. Yesterday the attending doctor told us that realistically, babies will stay open for five to seven days, due to size. This will apply to John Lee. Other factors such as blood in the lungs (due to surgery and possibly the breathing tube) and swelling are also prohibitive to the closing procedure.
John Lee continues to do well and in on schedule for the closing procedure.
We remain hopeful and thankful in waiting. We are glad to see our little guy pull through. This morning the clinical goal is keep John Lee comfortable and wait for the swelling to go down.
“Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.”
C.S. Lewis
Great friends
Warning: some of the pictures are graphic for sensitive readers
It has been a wild two days since the last update. Last night I went to put Henry in bed with hopes of switching with Amy visiting John Lee at the hospital. I did up Henry to sleep, but I also passed out. I do not remember when Amy came back. That went the update.
It kind of occurred to me how stressed we have been as the days go-by. I have had a headache. A rare occurrence. The day started off with me walking to the hospital to make sure everything was in order before John Lee was taken in for his procedure. At the hospital his nurse game an update of what was expected that morning, the anesthesiologist talked with me about the procedure. He said:
It will take 10-20 hours
He will be under and comfortable the entirety of it
It is common not to close the chest after the procedure
He will be very sick after the operation
He will not look great
He (the anesthesiologist) was from Zimbabwe
Then we talked about random things that are happening in the Malawi-Zimbabwe region. It is amazing how calming this was—therapy from my African brother.
Soon after they wheeled John Lee off and I went back to Amy and Henry. We would later receive intermittent updates about the procedure over the phone. He was doing well.
That morning my brother from another mother, Cody and his wife, Heidi and daughter, Georgia arrived. We soon were off to downtown Palo Alto. I cannot express enough how instrumental their presence has been. They have ministered to us greatly. Having them around during the period of the surgery helped both Amy and me not think, or worry much about the surgery.
Cody and his little girl
About 9 hours later we got a call from the hospital. It only said to got the front desk at the hospital, the surgeon would like to speak with us. We left for the hospital right away not knowing what to expect. When we got to the hospital the gentleman at the family center took us to a consultation room where we waited for perhaps 20 minutes. He later came back and apologized that we are supposed to go to John Lee’s ICU room. When we got there the surgeon told us that the procedure went well and they were able to connect the MAPCAS to the conduit with ease. They were also able to close the hole between the chambers. He went back to finish but called us to let us know that they will not be closing his chest up for another few days to let the swelling go down.
This is great news! All the possible best outcomes have been accomplished. Currently John Lee is lying in with his chest open (covered with a plastic membrane). We can see his heart beating. There are a lot more apparatus to help him get better, but this is expected. We are amazed at the care and expertise around us.
Today we have been updated further that they are more likely to close him up over the weekend. His organs are doing well. We were also expecting him to be under paralytics but he is not as they are observing that he is doing great. He is wearing a hat to that monitors brain activity. They are not concerned for him as he is showing great progress. It is standard for a baby his age.
John Lee resting after surgery
We are thankful.
Today we spent more time with Cody, Heidi, and Georgia. It has been great to hold baby Georgia and listen to a baby cry. Henry has had awesome time wrestling his uncle Cody…and the cars. We also had not met baby Georgia before yesterday. She was born a week before John Lee. A lot has happened since then. We are glad they brought her up to us.
Henry playing cars with uncle Cody
We are witnesses to amazing events. We were expecting a very long surgery (10-20 hours), it was complete in less than nine. The were expecting the doctors to only fix the pulmonary issue and fix the hole in the chamber at a later date–both issues where fixed.
We still have to take it one day at a time and I cannot get used to seeing my son laying with an open chest. We have hope beyond what we can see now. This has been John Lee’s music since just after birth.
Kufa Family 