It’s been a while since we have posted. Mostly because not much has happened. We are playing the waiting game, again. The biggest thing going on is learning to juggle a 3 year old and a 2 month old, while locked in a hospital.
But as I sit and wait for my baby to heal, I think of everything there is to be thankful for. Here we are living in a beautiful city that in normal conditions we would not be able to. The weather is almost always perfect, which provides us the ability to go for walks anytime of day. And walking is great for stress relief, which we need! We have family and friends that have visited which has made our time feel a little more vacation like. And we have been able to visit fun places up in the Bay Area. We have met so many great people and made new friends. In normal conditions we would be exhausted from getting up at all hours of the night to care for our newborn, but here we have nurses that tell us to rest while they care for him. There has been lots of uninterrupted time to be quiet before the Lord, and that time has been rich. Thankful for employers who are gracious. Thankful for the two churches who are ministering to us. Thankful for parents who care for us.
It’s so easy in these situations to be angry, depressed, overwhelmed. But changing your perspective makes all the difference. Our time here has been hard. And at the same time, our time here has been a blessing. Someday, when we finally make it home, we will look back on this time fondly and thank the Lord for all He did.
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.
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.
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.
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.
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.
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.
Yesterday morning I was in John Lee’s room early. When I arrived, I was told that they had big plans to start feeds later in the day. He was peacefully sleeping most of the morning.
At one moment alarms went off on his monitor. The nurse was checking on her other patient at this moment (John Lee had progressed to having a shared nurse instead of a dedicated one/two). When she returned she went straight to the oxygen, when I assumed he was desaturated.
Some time later I left to switch with Amy and also run some errands.
I spent the rest of the day with Henry.
In the evening Amy called and said John Lee has been having strange episodes and his lung had collapsed and the team at the hospital have been trying to figure out what is happening. She decided it was important that she stays at the hospital with him and get news from the team.
They had X-ray done which confirmed the collapsed lung. Other major concern is seizures, which were also confirmed later last night through an electroencephalogram( EEG).
Since then he had three more last night and he is now on medication to control the seizures.
The plan now is for John Lee to have a CT or MRI either today or tomorrow.
The feeds were started yesterday and the new episode has not detracted that progress. He is continuing to progress with feeding steadily. The CPAP is also going to be removed today and he will go back to the hi-flow.
“Anxiety does not empty tomorrow of its sorrows, but it empties today of its strength.”
It has been a few days since our last update. A lot has happened during these days even thought it has felt slow for us.
First, we start with John Lee:
John Lee is making positive strides. They have removed the line that went to his heart, both chest tubes, and some other wires that were monitoring things. His CPAP is off and he is now on a basic breathing cannula. All his drip medications are off! He is being weaned off the last of his pain meds. The last step is to get him back on formula. We are almost to the recovery floor!
Losing most of the tubes means that we hold him easier. We are thank for this because John Lee has not been held much since birth. The more strings he loses the sooner Henry will get to ‘squeeze’ his little brother.
What needs to happen is they need to see that no fluid builds up in his chest from the formula. The chest tubes came out sooner than they had wanted. The entry sights were not looking as good as they like and decided to pull them since the tubes had been in so long. So now they have to monitor the fluid differently. We are praying he has no issues switching back to formula, and eventually back to mommy’s milk.
We can have lots of snuggles now with so many things out of him. Physical therapy and occupational therapy come by regularly to work with him and give him messages. Lucky boy! They showed Amy to let him practice sucking on her finger. He does so great!
While putting this post together the attending doctor just reminded me that tomorrow is a big day as John Lee will go back to feeding. He also mentioned that, depending on how the feeding goes, he may be moved out of the ICU on Monday.
Second, Life after Stanford:
In previous posts I mentioned that John Lee was born at the tail-end of my final university semester. During this semester I had taken few job interviews and continued to pursue job/career endeavors while were are here in Stanford to the tune that I have gone back home twice for interviews since we have been here.
This week I was asked by my potential employer if I am still interested in the position I had interviewed for recently so that they can prepare an offer. We have to wait until some time next week to receive the said offer and are hopeful for great news.
These are the main happenings of this past week. We are hoping to make at least to post each week, with a special update for any major events.
“Faith has to do with things that are not seen and hope in things that are not at hand.”
Last Monday Henry and I travelled to home. I had a job interview in San Diego. During that time Amy made gave us an update. You can read it here.
Since the last update a lot has happened. First, since the breathing tube came out and they are progressively lowering the help he is getting from the CPAP. This means that his lungs are getting stronger to work without the help. He is also on the lowest amount of morphine that can get from the drip. We are hoping he will be weaned off it soon.
Second, the strip covering John Lee’s sutures came off today. For the first time we can see his scare and the doctor’s handy work.
This morning Amy posted on Facebook that she could feel not holding John Lee for over a month. A number of friends followed in offering and praying for her so she could hold her baby. Minutes later the nurse asked of the last time she was able to hold him. She went on to say it is about time she held him again.
What followed was two hours of uninterrupted mother and son bonding time. I walked in and I held him for a full hour as well. We are thrilled! Little things we take for granted mean a lot more when we do not have access to them. We are thankful to experience and to know this.
More visitors came. We are thrilled to have the Gomez; Norman, Lisa, Kyle and Natalie with us this weekend. Oh! my! Henry is over the moon (So are we)!
We are thankful for all our friends. Your prayers. Your thoughts. Your encouragements. Your gifts. We are not alone as we walk this road. So thank you!
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!
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.
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.
Six weeks ago today our little fighter joined us. As the days go by we are learning that there should be an army of these little guys, because there is quite a good number of them. Everyday were meeting or seeing another family anticipating to take home a little guy or gal. John Lee has made an impression on us, and we are growing along with him.
His grandmother and Tonya left today. It was great to have them around. While they were here they relieved Amy and I were were able to go on a date.
Thank you Grandma Sue and Tonya!
Henry loves them. If he had his way they would live here with him.
While they were here they saw John Lee before and after his chest closure. We were hoping that grandma sue would be here when we learn his care. John Lee is taking his sweet time, therefore we do not know when we will be learning about his care.
Not much has been happening. When things happen we tend to look at them as almost normal. We do not want to them to be status quo, but we are learning to appreciate the boring, uneventful days, still.
Since the closure he puffed up again. Supposedly it is normal after such procedures. His arterial line quit functioning and they had to replace it. They had radiology do it. That did not work. Last resort was to do it surgically.
For next few days we will be looking to more recovery. He is doing it slowly, but surely so that is what we are anticipating. Since the closure they have been taking things out slowly, especially medicine. They are also letting him breath on his on, somewhat. This is the pace we are expecting.
With how fast time is going, in no time we will be holding him.
“…but let your adorning be the hidden person of the heart with imperishable beauty of a gentle and quiet spirit, which in God’s sight is very precious”
For two weeks and three days John Lee has lived with his chest wide open. We were getting familiar with this wild unusual look he had going. I had never considered in my wildest dreams that I would look at my child, or anyone, and admire his/her heart beat visually. It is amazing and this is what we have just been experiencing.
Today the chest was closed. We will not miss this episode, yet we will marvel at what modern medicine is able to accomplish.
Overall he doing well.
John Lee is recovering from the procedure from Saturday morning. They were able to dial back on his sedation, after the operation, so he has been awake most of the evening. Because his diastolic blood pressure was low, they also stopped the diuretics—they have since resumed since the blood pressure has picked back up.
As mention the last post, the next milestone is to remove the breathing tube. Each passing day we are learning be patient and trusting. John Lee has been tremendously amazing in his response to what he has gone through. What a story he will have to tell!
His heart is special. We hope he will know and understand this fully.