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.
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.
“Patience and Perseverance have a magical effect before which difficulties disappear and obstacles vanish.”
John Quincy Adams
The last few days have been slow. Slow is good around here…I keep saying that! The slowness has had it rewards. Some of John Lee’s medicine have been stopped. So he is awake a lot more.
He is still on medication to remove fluids, only that it is not on drip anymore as they are giving it to him periodically. His blood thinners are being administered the same way.
John Lee’s next milestone is getting the breathing tube removed. Any moment now they will start letting him breath on his own for short intervals. They are calling this sprints. The goal of the sprints is to build his lung muscles to get the ready for when the machines are removed.
Trying out new tricks
It has not been able to get into a routine with Henry. We try but some days go too fast. Kids do not stay here for long, so it had for him to keep a friend. He’s is making friends just not keeping them for long. Meanwhile he is trying new tricks. Can’t know a growing boy!
Little brother will be in the good hands of the big brother soon.
“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.
“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.
“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.
“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.
Kufa Family 