Little Things that make the Heart Glad

“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.

Slow Days

“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

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.

Burlingame, Kansas

Henry Gray is here!

“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.

Boring Days Are The Best Days

“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 

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. 

Boring days

Stanford – Settling

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.