Good Rough Days

“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.

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.