The last couple of days have been full of surprising news. Wednesday they called us mid day and informed us that they were getting John ready to move to the floor right then. Big Shock! The doctors said he is doing really well and can go ahead to the PCU where he will remain until discharge. He still is on IV nutrition and will be for the next two weeks. The doctors explained that his lymph system is very injured and is going to take some time to heal. There could be many reason for the injury, his extreme swelling, blood clot, surgery, etc. but there’s no way to know for certain. The only thing to do right now is let his body heal on its own.
Amy and John Lee on Tuesday
Yesterday they tried for the MRI without sedation, but he moved his head too much even though he was asleep. So they will try again next week. But the surprise yesterday was that he doesn’t need oxygen anymore! The nasal canula has been removed and he is completely on his own and doing great!
And todays surprise was that the doctors said they are taking out the chest tube tomorrow because there has been no output for over 24 hours. So much has happened!
And the big excitement for Amy today was to have skin to skin with her sweet baby. That has happen ended since he was two days old. It’s been a good couple of days.
Amy is currently there alone but has some visitors coming tomorrow. One of her best friends is coming tomorrow with her family. Amy is looking forward it.
Nasal Cannula is gone!
It’s hard being away from home for so long and also not putting down roots. It’s kind of a weird feeling being somewhere indefinitely, but knowing it’s not forever. We didn’t move here. We are just living here for now. It’s like a long stressful vacation.
“…Rejoicing in hope; patient in tribulation; continuing in prayer…”
St. Paul to the Romans
May 8th we welcomed John Lee. It has been an incredible two months. We have learnt a lot about ourselves. We have experienced extraordinary love from our family and friends, and strangers.
Two months old on daddy’s birthday
We have are constantly reflecting on our time with John Lee. Our faith has been stretched to say the least. It has been a demanding time where we not only received an awesome gift of a son and also witnessed wonders of modern medicine. We could never have come up with our experiences.
Our lives and of those around us have been stretched to pray and hope. We have specifically been looking for endurance.
Let me touch on my lovely wife Amy. When we found out that we will go through a period of uncertainty, Amy was preparing to begin tax season; we were certain of a grueling four months (January – April) of work. She would have to go through it while pregnant, full of uncertain emotions on top of all other emotions experienced by an expectant woman.
Expecting John Lee
She handled it with gusto!
Then came delivery. She delivered quickly, on the day when her water broke, but John Lee had to be taken away. She could not see him she recovered.
As a new mom, I am sure, you are look forward to feeding (she planned to breastfeed), nurturing, and do all the new mom stuff. This would not be happening—although while at Rady’s, for a small period she got to breastfeed.
So how do you deal?
Amy did everything is could and was to by the medical staff. On top of that we knew that there is an army of prayer warriors lifting us up in prayer. We can feel it! It was not easy not to be able to hold John Lee when she could not, nor be ‘mom’ all the time to the little guy. She cannot always hold, feed, nor change his diaper, bathe him etc.
Having our faith stretched does not mean we are capable of handling our situation with ease. On the contrary I believe our mandate has been life altering beyond what we can bear. It is humbling to admit this. Friends reading our blog posts may assume that we are grasping our situation just fine, but we are heavily relying on sustenance that is not from within us. Again, I reiterate that we can feel it when you lift us up in prayer.
In past posts we mentioned that I had been back home twice. During this period I could feel being removed from a heaviness. On the second trip I evaluated what was happening. Where we are there are great living quarters, with great amenities. The people are broken like we are. Their lives have been altered in different ways.
We share stories a cross tables. Update each other on what is happening with our loved ones. Rejoice with each other on great news.
The atmosphere is heavy.
So being home is great. The situation is greatly reduced to your own, even in hard times. When in your are in a communal environment, it is amplified.
These have been some of our experiences Since John arrived.
My hope is for Amy to go home soon, with John, and experience singularity and being a new mom. Meanwhile, we are here and we need endurance together with the families around us to get past the valleys that may seem endless at times.
—Quick update on John Lee—
Today they had put a new chest tube in due to fluid building up around his lung. Part of this build up is from his lymphatic system leaking fat from the formula. So now he has to go back on IV nutrition. This could be another week or two. As long as John Lee is on IV nutrition, he will be in the icu.
We are also waiting for him to have an MRI to determine the cause of the seizures. This will happen sometime this week. They are not rushing to do this because they care more about his respiratory condition. He is responding to medication for the seizures and has not had any since early Sunday morning.
Thank you for your prayers!
While we wait for his vascular and lymph systems to heal, we are hoping to be able to move forward with bonding. Physical and occupational therapy are working with him more too. His thumbs are very stiff, so he will be getting hand braces this week.
“Anxiety does not empty tomorrow of its sorrows, but it empties today of its strength.”
Charles Spurgeon
It has been a few days since our last update. A lot has happened during these days even thought it has felt slow for us.
First, we start with John Lee:
John Lee is making positive strides. They have removed the line that went to his heart, both chest tubes, and some other wires that were monitoring things. His CPAP is off and he is now on a basic breathing cannula. All his drip medications are off! He is being weaned off the last of his pain meds. The last step is to get him back on formula. We are almost to the recovery floor!
The Rhino CPAP is gone!
Losing most of the tubes means that we hold him easier. We are thank for this because John Lee has not been held much since birth. The more strings he loses the sooner Henry will get to ‘squeeze’ his little brother.
What needs to happen is they need to see that no fluid builds up in his chest from the formula. The chest tubes came out sooner than they had wanted. The entry sights were not looking as good as they like and decided to pull them since the tubes had been in so long. So now they have to monitor the fluid differently. We are praying he has no issues switching back to formula, and eventually back to mommy’s milk.
We can have lots of snuggles now with so many things out of him. Physical therapy and occupational therapy come by regularly to work with him and give him messages. Lucky boy! They showed Amy to let him practice sucking on her finger. He does so great!
While putting this post together the attending doctor just reminded me that tomorrow is a big day as John Lee will go back to feeding. He also mentioned that, depending on how the feeding goes, he may be moved out of the ICU on Monday.
Second, Life after Stanford:
In previous posts I mentioned that John Lee was born at the tail-end of my final university semester. During this semester I had taken few job interviews and continued to pursue job/career endeavors while were are here in Stanford to the tune that I have gone back home twice for interviews since we have been here.
This week I was asked by my potential employer if I am still interested in the position I had interviewed for recently so that they can prepare an offer. We have to wait until some time next week to receive the said offer and are hopeful for great news.
These are the main happenings of this past week. We are hoping to make at least to post each week, with a special update for any major events.
Today your author is Amy. Monty and Henry took a quick trip home. So I’m holding down the fort.
Since the last post our doctors have made plans for many changes.
This past weekend, they wanted to remove a chest tube and the RA line. But they found that my milk and the low fat formula they switched too, both are too fatty for him right now. The clot that’s in his arm is causing his lymph system to leak fluid into his chest and then out the tubes. If they removed tubes, then all that fluid will cause issues inside him. So axe that idea.
The RA line they cannot remove because they have to administer IV nutrition through it since he is not tolerating milk or formula. So again, axe that idea.
They wanted to wean off morphine, so they turned off the drip and started giving him periodic doses. He did NOT do well with that. John Lee got very mad, and in his frustration and crying, kicked one of the chest tubes and caused the suture to come out. So yesterday, they did end up pulling out that tube. Lucky John😉
Fortunately, that chest tube had stopped putting out fluid by then.
Now John Lee is back on a morphine drip and they are slowing the weaning process, but still moving forward with it.
Also due to his withdrawing they had to postpone extubating. That was frustrating. But praise the Lord, today was the day!! The breathing tube came out! He is breathing very well on his own. He has a CPAP right now and is doing well with it. The next step is getting him on what they call “High Flow”. It’s about three steps away from being able to move to the recovery floor!
Doesn’t he look like a rhino?
They have also removed the very frustrating arterial line. This makes me very happy.
Today was a big day for John. He’s been intubated for 6 weeks now! He’s showing off his breathing skills and pleasing the doctors. Plus he took a pacifier today.
But today was an even bigger day for mamma. I’m seeing so much progress in my little guy. And for the first time in 6 weeks, I heard my baby’s voice. It’s hoarse and quiet, but I can still hear it. My eyes immediately filled with tears of joy. It was like hearing your child cry for the first time when they are born, but better.
“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 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.
Kufa Family 