“A bird in hand is worth more than two in the bush”
Old Proverb
Some time last week I was just thinking that we are parents again. I remember when Henry was two weeks old I would wake up around 2 AM with sounds of Amy feeding the baby. Sometimes I hovered around his bassinet making sure he is still breathing.
This time around it is not the case. There is a beautiful baby that the nurses are taking care of and we visit from time to time. I am still protective, but the nurses protect the baby at all cost.
John Lee this morning
We are rejoicing in every single moment that we would normally take for granted.
Amy got to hold John Lee today! We talked about how it has been two weeks since baby was last in momma’s arms yesterday. Today I stayed behind with Henry and got a text from Amy. It said, “They are planning to let me hold him around 2!” My heart was full of joy.
Beaming momma
Rejoice in the Lord alway: and again I say, Rejoice. Answered prayers!
What more can I say! We are grateful now, and hopeful for the future. We are looking forward to holding John Lee more—He will be hugged and squeezed with love.
“Except our own thoughts, there is nothing absolutely in our power.”
Rene Descartes
As we are getting closer to Wednesday I thought we should share more of what we understand about the upcoming procedure.
Amy had more time to speak with the doctors regarding surgery last weekend.
The current game plan is for surgery to be this Wednesday, May 29th, at about 9 am. This is going to be an all day surgery. The doctor described that John Lee has 3 Mapcas (abnormal arteries) that they will connect to a conduit to centralize blood flow. They are anticipating this to regulate the amount of blood flow out of the heart to the lungs. The conduit will have a valve for blood flow regulation.
Heart similar to John Lee’s
They also anticipate fixing the missing wall between the bottom two chambers of his heart. But they will not know for sure until they do the flow study during surgery. This will show them how the blood is pumping and if his heart needs the wall fixed now or later.
During this talk we came to realize that John Lee will be having many surgeries during his childhood. The conduit they will be putting in will not grow with his anatomy. So of course it will need to be replaced as he gets bigger. The doctors reassured that they will try to give him the longest stretch possible between surgeries. They do this by essentially putting a conduit in that is slightly too big and letting him “grow into it.”
Our little man at midnight
Our nurse today prepared Amy that he will have many more lines and IVs when he comes out of surgery. John will also either be heavily sedated or paralyzed for a day or two while he recovers so that he does not move too much. There will be lines coming out of his chest that measure the pressure in his heart. She reassured that those lines and IVs will gradually be taken out each day, so it will not be long before we are able to hold him again.
We are thankful for your uplifting messages and prayers. Please continue to keep us in your prayers. Some items on our minds and hearts are: we hope that John Lee is safe from infections. We also understand that we are in very capable hands and minds here in Stanford. We are still praying for wisdom for the doctors, surgeons, and everyone involved in John Lee’s care. Last, we hope that we remain healthy. Our health is important for our stay at the Ronald McDonald House.
Loren and Sue went back to Temecula this afternoon. It was great to have them around. They have been instrumental in providing us much needed family–they reunited us with our first born, and are the closest family we have. We will miss them until we see them again soon.
Henry enjoying Octonauts in the bosom of his grandpa
Amy with holding John Lee in San Diego
As of today it has been 2 weeks since we have held John Lee. This is understandably very painful for a new mother’s heart. Any new mom wants to hold her newborn, care for them, bond. But that is very difficult when baby is in the hospital. So the bonding process has to be more creative. The nurses allowed Amy to be apart of his care last night. She was able to bath him, change his diaper, clean his mouth, and help change his bedding. This all sounds so basic. But it meant so much. Something we have been learning is to take joy in little thing, in small victories. Being able to wipe the sticky goo off his skin left from bandages brought so much joy.
“Peace I leave with you; My peace I give to you; not as the world gives, do I give to you. Let not your heart be troubled, nor let it be fearful.”
Jesus the Carpenter
Rest
It has been slow. The last major event that occurred was the Cath Lab, and the doctors told us that they got what they were looking to get. John Lee has since recovered. It is fun to see him covered. He gets mad when he is uncomfortable, mainly due to the breathing tube. He has a fight in him.
As we know, he is going to have surgery next week. I cannot bare to think of it. I have such a weak stomach. I talk about it but it is hardly on my mind. I look at his tiny body and it is hard to imagine.
Time and time again we hear the saying ‘things have to get worse before they get better.’ The one thing I keep hearing is that babies get very sick after surgery. This is coming. This week is it. I am glad that we are not alone in this. We have people alongside us, lending their shoulders and more along the way. Thank you! Amy will tackle the details about the surgery in a few days. She spoke with attending doctor today and go clarity about what is going to happen.
Since it is slow it has been good to have Loren and Sue around. They keep us sane. We are going to miss having them around when they leave on Monday. After they leave we are going to have other friends visit with us next. We will talk more about them when they are here. We are very excited.
Monterrey Bay
Henry has also been a treat. His favorite word currently is ‘NO.’ Sometimes he says it before you finish telling him what is happening. Like, “Henry do you…,” “No!” “…want some Ice cream?” “Ummm…yeah!” Bad habits die hard. #thatparentinglife.
We drove south to Monterrey Bay yesterday. They bay area is stunning. It was a good break.
Today Henry got to ride on a train for the first time with the two favorite men in his life. We started in Palo Alto. I thought we were going all the way until Loren asked, “how far are we going?” At which I replied, “Burlingame.” It was both our first times in Burlingame on the side of the country. Vastly different from the one Loren knows.
“Sometimes being a brother is even better than being a superhero.”
Marc Brown
John Lee had the Cath Lab done this evening (May 23). It went well and and he is currently resting. When I saw him, about 10:30 PM, he was just waking up. All this means that they doctors did not get the results they were hoping for last night and we are looking at Wednesday, May 29 as the surgery date. Overall he’s looking well. We will be looking to hear from his doctors for a full report tomorrow.
John Lee recovering from the Cath Lab
Henry woke up in great spirits this morning. He played with cars before we went downstairs for breakfast. He was looking forward to go to the ‘hose-pital’ to see the train and John Lee, in that order. He was not disappointed. Rady’s Hospital has a train, it was fun. Stanford took it up a notch or a few notches. The boy had a great time with it.
We later met with the child life therapist. She had a teddy bear with lines to mimic John’s appearance. It was not a hit. We should have had planned for her to put lines on a car, which she said she had done before. Henry Gray was glad to meet his brother. On the way it the children welcome team at the hospital gave him a bunny for brother. Henry was happy to give it to his brother. When it was removed for brothers ‘giraffe warmer’ (bed), he made sure it was back in it. He talked about John Lee throughout the day.
Our little warrior
We glad he is taken by his brother. It is great to see, especially now. As rough as it may be, the family is close. As John Lee is fighting each day, it is great to see his big brother being part of it.
Earlier in the day we talked about whether the three year old Henry will remember this season later. We are doing our part to document the times and experiences as much as possible in this blog and in pictures.
The four of us together
Even in tough times we remain hopeful because of the love we see around us. The support we are receiving from our community is incredible. We are grateful to be blessed by you.
“So now faith, hope, and love abide, these three; but the greatest of these is love.”
St. Paul
So they had the conference/meeting today. We did not get much new information. It has been clarified that they are looking for John Lee to grow a little bit more, if possible. A bigger John Lee means easier surgical procedure. So today going forward they will continue to remove apparatus that is assisting his being so they can determine what he needs and how much he can do it on his own. The better he does the longer the wait.
They also got more information from San Diego. The Cath Lab that was done there was not as comprehensive as the doctors here would like. Depending how he does tonight, he may have to do another Cath as soon as tomorrow or Friday. If he does better, just as the surgery, we will wait longer. By the way, he has May 29 as the surgery day. Again, if he does well he may be bumped off for another day in future.
John Lee is the main news but his big brother is here! Henry Gray and his grandparents Loren and Sue arrived this evening. They said he did really well for a three year old traveling 441 miles. He gave us his famous hugs and even tried to show me how do the ‘squeeze.’
At dinner he put a smile on a lady who later told us he was just a joyful kid. I agree!
Tomorrow we have arranged for Henry to meet with a therapist to transition him into meeting his brother. She has tools such as dolls attached with similar devices as John Lee. Henry has not met John Lee yet. This event is worth putting on video.
Our home away from home
In the next few days we will be transitioning into having Henry Gray here and getting into a routine. Routines may be boring but as we have learnt, boring is good.
There are a lot of activities here so there will not be much idle time.
We are grateful to have the entire Kufa family together and the grandparents here with us.
“Be joyful in hope, patient in affliction, faithful in prayer.”
St. Paul
It has been raining a lot while here in Palo Alto. Everything is green or wet. It is also cold. It does not feel like we are still in California. I guess we are just not used to seeing this amount of rain.
Yesterday we walked to the mall, the greenly triggered Amy’s allergies. This morning she thought it better to stay away from the baby, just in case the tickle in her throat is something else.
So, morning I decided to walk to the hospital from the Ronald McDonald House so Amy had the car. My goal was to get in just in time to catch the doctors making their rounds. It is about half a mile walk—well, I was able to cut through the mall, probably shortened that walk. I also figured I might as well get familiar with this place. It is amazing what you may seen when you walk unlike driving.
When the doctors got to John Lee’s room they were happy with his numbers. Guess what? The better the numbers the longer the wait. His attending doctor told me that the Cath Lab is still on the table, but they are waiting for vein pressure numbers from San Diego. Their justification for a second Cath is the more information they have the better they will be able to do the procedure.
The familiar scene of John Lee’s room
Tomorrow they are presenting John Lee’s case. The attending said the surgery will be, tentatively, a week from tomorrow. Tomorrow is a big day!
Beautiful colors in Palo Alto
Also, tomorrow Loren, Sue (Amy’s parents) and Henry will join us. Loren and Sue will head back to Temecula on Sunday. It will be great to have family around for a few days…and of course we are excited for the first born here. He missed today’s dinner. It was hosted by Stanford University Men’s Basketball Team. He would have enjoyed it (I know it!).
We have also been deciding about the experience of being at the Ronald McDonald House. Since we both commuted to college, we think that is akin to dorm living. Look out for a post about the experience soon.
I think we will walk more. Hopefully the heat will turn up a few notches. The rain does bother me, I love the green and wet weather. It feels clean.
“This is the day which the Lord hath made; we will rejoice and be glad in it.”
– King David
Lobby at Lucile Packard Children’s Hospital
This past weekend we had to learn about routine. As much as we would like to race to recovery we are learning that things just do not work that way. There is a lot of wait time.
Let me nerd out some. When learning about performance, especially in business, they teach us about value adding and non-value adding activities. Activities are viewed in terms of process time, inspection time, move time, queue time, and wait time. Of all of these activities the only one that adds value is process time. So we try to minimize all the non-value adding activities so the cycle is streamlined.
Since the day John Lee was born we have been waiting, processing, inspecting, moving, and queuing. So have the people following his life and progress. He was born at Sharp Mary Birch, then moved to Rady’s. At Rady’s they inspected him, while we were queuing for housing. He was moved to Stanford, Palo Alto. We queued for housing at the Ronald McDonald house while John Lee was being inspected. Currently we are waiting for other processes
Footprints!
Amy using colostrum for oral care
During this time, John Lee has been tapered off a lot of medications. He is awake a lot. It is great to see him move as opposed to when he was under paralytics. We have also been able to get few effects done. The nurse yesterday helps get foot prints of John Lee. Amy was ecstatic! We have also been able to administer oral cleansing using colostrum
His attending doctor told us the ‘boring days are the best’ because it means that there is not much commotion or activities. So we are learning to appreciate boring days.
Today was another mostly boring day. We rejoice in little things like he moved a lot. His eyes were open more and looking at us. He responded to us singing and reading to him. It is amazing how much joy he is bringing to us.
Look at those eyes
In the next few days John Lee is going to get a Cath Lab to map his blood vessels. The doctors will use that information to discuss plans going forward. We are expecting that they will make the decision on surgery this Wednesday.
Unlike Rady’s Children Hospital, Stanford allows children in the ICU as long as they are healthy. This is a huge change.
First, Henry has not met his brother yet. We don’t know how he would do meeting John Lee in the current circumstances, but we are excited for the them to meet nonetheless.
Second, we are hoping that Henry is included in all events of our little family, including tough times such as these. I believe that we can make memories out of everything situation. Maybe one day we will talk about them around a fire camp and if they ask, where was I? It will great to tell them, even better show them picture of them together.
Henry Gray announcing his little brother
Some time next week Henry will be joining us. We miss him so much. We are excited to have him here with us. Our first born is fun and easy going. We believe he’s a good big brother. He gives the best hugs, he squeezes the love out of you while saying, “squeeze!”. His mom is missing his chitter-chatter, and snuggles.
It is the little things. The may seem so little, but they are huge!
“There is nothing on this earth more to be prized than true friendship.”
– Thomas Aquinas
John Lee looks to be getting settled in the Stanford Children’s Hospital system. This morning his attending doctor told us that he did well last night. They are getting the results that they are looking to achieve. For now, we wait to hear from his attending doctor this afternoon.
Meanwhile, Amy and I checked into the Stanford Ronald McDonald House. We are grateful to have accommodations beyond what we expected. Our stay here is indefinite as it all depends on the care that John Lee will receive and the recovery thereof.
My graduation is tomorrow. Obviously I will not be there. It is bitter-sweet. On one hand I completed my degree (finally), on the other I cannot walk. I have been looking forward to this moment for years. Last week I was hoping I could bring my two boys to see me walk. Somethings are more important than others, therefore John Lee’s health must take priority.
While we are at Stanford, we are admiring the streets and the surrounding features. We are thankful to live here, in this state, in this country.
“For I do not seek to understand in order that I may believe, but I believe in order to understand. For this also I believe-that unless I believe I shall not understand.”
– St. Anselm
John Lee was transferred to Lucile Packard Children’s Hospital at Stanford University. Amy and I arrived at the hospital soon after he did. They were settling him in when we arrived.
The attending doctor briefed us that they are transitioning him to the care at this hospital. It will be different from what he was getting at Rady’s Children Hospital. For instance, they are weaning him off the paralytics he was on. We were already able to observe some movement.
The NICU cardiologist spoke with us and mentioned that they may repeat most of the procedures that were performed at Rady’s to get a better sense of how to approach John Lee’s care, this may include the Cath Lab. The decision about how to approach the surgery will be made next Wednesday.
At Stanford, the leading cardiologist for John Lee’s condition is Dr Frank Hanley. Another Cardiologist who may be in involved is Dr Michael Ma. We told that Dr Hanley and his team at Lucile Packard performs similar procedures, to what John Lee is anticipated to have, at least four times a week. We are blessed to have the team here taking charge and care of our baby.
UPDATE: May 17, 2019 11:00 PM
They moved John Lee to the unit where he will have surgery. The main concern is that he is pumping too much blood to his lungs and not enough to the rest of his body. The current goal is to maintain his blood pressure and get him to Wednesday. Other options include intervention this weekend if necessary. Dr Hanley is available if called upon. For now they are running tests and watching him.
Kufa Family 