“I can do all things through Christ which strengtheneth me.”

St. Paul

We have been waiting for this day to come for two years; John’s second surgery. It’s time for the conduit in John’s heart to be replaced. He has out grown the one placed when he was three weeks old and this morning the doctors at Stanford will place a bigger conduit.

As many of you probably know, John was born without a pulmonary artery. It was amazing the reconstruction that was done on his heart at only three weeks old. And it was quite a journey living up in the Bay Area for three months waiting for our sick baby to heal. Since then he has made so much progress. We take him to physical therapy and occupational therapy every week. He meets with an early intervention specialist twice a week. And he started speech therapy a couple weeks ago. 

John still doesn’t walk without a walker or crawl and he cannot speak. But he is sitting and he’s communicating! That boy is so stinking cute how he signs for “more”. And the smile on his face when you know what he wants can melt any heart. It took a year and half for John to be able to sit up on his own. We never gave up, and he worked so hard. Seeing him finally sit on his own was one of the most rewarding and victorious moments I’ve ever experienced. I have literally never been so proud.  This sweet child works hard! And he is the toughest kid I know. 

We know God has big plans for this boy.  

Surgery today went well. It was much faster than expected. The surgeons opened him up and took out the conduit replacing it with a bigger one. They also stretched the arteries allowing more blood flow between the heart and lungs. There was some bleeding, but they were able to contain it and give him something for clotting. Currently he is resting. The icu team will start waking him tonight or tomorrow. 

Please pray with us for his recovery. John already lives in pain, and who knows how much more after this surgery. Pray for minimal pain and good pain management for what he does have. Pray for protection from infection, clots, and seizures. And pray that he does not regress in his development. 

Please also pray for Henry and Ellie who definitely know something is up and are feeling the stress too. They love their brother. 

We are thankful for you all for coming along side us. All the prayers and words of encouragement mean so much more than I can express. Camera Du

“Sweet is the memory of past troubles.”

Marcus Tullius Cicero

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. 

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.

“Faith has to do with things that are not seen and hope in things that are not at hand.”

Thomas Aquinas

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!

“In every thing give thanks…”

Saint Paul

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”

Apostle Peter

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.

Which of you by taking thought can add one cubit unto his stature?

Jesus the Carpenter

In a little one month old baby’s time everything goes quickly. It is amazing what can happen in a matter of hours.

I drove back home to Temecula on Wednesday, and got back to Stanford last night, Friday. I did not miss much, at the same time a lot has happened.

Thursday night Amy told me that John Lee was ready for his chest be closed. His doctors were talking about ‘sometime’ the next day, Friday. Friday morning came and we were certain that the procedure would be done at some point that day.

I had planned to start driving back Friday morning-ish. At around 11 AM Amy called me and said the did not have a surgeon available to do his procedure. She was frustrated. 

We are certainly ready for the next step. John Lee has had his chest open long enough. At the same time we are thankful that they are able to ‘kick the can’ along. It means that he is doing well. Also understanding that there are limited resources, we appreciate the work they are doing for babies. 

I am with him as I am typing this. They are currently prepping him for the procedure which has been scheduled for 8:30 this morning. 

My trip south coincided with grandma Sue coming up. She came with Tanya Haynes. Henry is over the moon.

Thank you for not ceasing to pray for John Lee. We are encouraged each day and looking forward to the next phase, which is removing the breathing tube.

“For, brethren, ye have been called unto liberty; only use not use liberty for an occasion to the flesh, but by love serve one another.”

Author of Galatians

Everyday is challenging, but is also an opportunity; it depends which way you want to take it. It may be hard to see the opportunities when facing hard times. Some times we need a different perspective or re-alignment. 

In last update we talked about waiting. The circumstances have not changed much. We are still waiting for John Lee’s swelling to fall to an acceptable amount so that his chest can be closed. His organs continue to perform well, therefore the doctors are happy with the progress. They told us that each case is different, but it typically takes 7 to 10 days for the closure. Each child reacts differently the surgery as such the child’s healing is what determines how fast the closure would be. 

Meanwhile we have gotten to know some of the families here at the Ronald McDonald house. Each family is here because of a sick child. One family’s child in particular had the same procedure as John Lee, but has since had other complications. We sharing hope and encouraging one another while we face each day. Please keep the families and the children in your prayers. There are opportunities to reach out to other families while we are here. 

“Except our own thoughts, there is nothing absolutely in our power.” 

Rene Descartes

As we are getting closer to Wednesday I thought we should share more of what we understand about the upcoming procedure.

Amy had more time to speak with the doctors regarding surgery last weekend. 

The current game plan is for surgery to be this Wednesday, May 29th, at about 9 am. This is going to be an all day surgery. The doctor described that John Lee has 3 Mapcas (abnormal arteries) that they will connect to a conduit to centralize blood flow. They are anticipating this to regulate the amount of blood flow out of the heart to the lungs. The conduit will have a valve for blood flow regulation. 

They also anticipate fixing the missing wall between the bottom two chambers of his heart. But they will not know for sure until they do the flow study during surgery. This will show them how the blood is pumping and if his heart needs the wall fixed now or later. 

During this talk we came to realize that John Lee will be having many surgeries during his childhood. The conduit they will be putting in will not grow with his anatomy. So of course it will need to be replaced as he gets bigger. The doctors reassured that they will try to give him the longest stretch possible between surgeries. They do this by essentially putting a conduit in that is slightly too big and letting him “grow into it.” 

Our nurse today prepared Amy that he will have many more lines and IVs when he comes out of surgery. John will also either be heavily sedated or paralyzed for a day or two while he recovers so that he does not move too much. There will be lines coming out of his chest that measure the pressure in his heart. She reassured that those lines and IVs will gradually be taken out each day, so it will not be long before we are able to hold him again. 

We are thankful for your uplifting messages and prayers. Please continue to keep us in your prayers. Some items on our minds and hearts are: we hope that John Lee is safe from infections. We also understand that we are in very capable hands and minds here in Stanford. We are still praying for wisdom for the doctors, surgeons, and everyone involved in John Lee’s care. Last, we hope that we remain healthy. Our health is important for our stay at the Ronald McDonald House.

Loren and Sue went back to Temecula this afternoon. It was great to have them around. They have been instrumental in providing us much needed family–they reunited us with our first born, and are the closest family we have. We will miss them until we see them again soon.

As of today it has been 2 weeks since we have held John Lee. This is understandably very painful for a new mother’s heart. Any new mom wants to hold her newborn, care for them, bond. But that is very difficult when baby is in the hospital. So the bonding process has to be more creative. The nurses allowed Amy to be apart of his care last night. She was able to bath him, change his diaper, clean his mouth, and help change his bedding. This all sounds so basic. But it meant so much. Something we have been learning is to take joy in little thing, in small victories. Being able to wipe the sticky goo off his skin left from bandages brought so much joy.