Two Months Old

“…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.

Rhinoceros

“Without pain, how could we know joy?”

John green

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.

Slow Days 3.0

“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.