Cheers for Pat

"And in the end.."

2009-03-21T20:28:00.000-07:00

Today we cremated little Patrick. We had a beautiful little ceremony in a utilitarian crematorium with almost everyone who was at the service on Thursday present, plus Pui's sister, just arrived from Thailand. Three monks were there, and chanted a traditional ceremony. After the monks had finished chanting, everyone sprinkled the comforter and blanket Pat was in with Chrysanthemum petals. The blanket he was in was one he had been on several times in his short life, and had little animals and vehicles, and had text reading "On an adventure" and "Going home!"

The things you remember.

It was a nice way to say goodbye to our son. We are saddened to be parted from him, especially so soon, but partings are always sad. We will be sad for awhile, I'm sure. But we intend to remember his time with us joyfully - he has taught us so much about ourselves, our relationship with each other, and our relationships with our family and friends (so many friends!). He showed us what we value, and just how important love is. He brought a fullness to our hearts, and while our hearts ache with his departure they are no less full. If the Beatles were right ("And in the end the love you take is equal to the love you make") then Pat will take love all out of proportion with the length of his stay.

Tomorrow we will have a memorial service to celebrate Pat's time among us, and acknowledge that we miss him. Pui and I fully expect it to be both difficult and fulfilling. We hope that the cremation today and the memorial service tomorrow will be enough of a closure for us, so we can begin to figure out what the future might hold in store for us next.

We say goodbye, and go on with our lives, but Pat will always be in our hearts. We will cherish the lessons we have learned from him as much as we will cherish the memory of every moment we had with him.

Farewell.

Video of Pat

2009-03-20T17:20:00.000-07:00

This video was taken the night before his surgery - the last time we were really able to interact with him, and the first time we saw his eyes since his first day. It can be seen on Youtube also.

Farewell, little Pat.

2009-03-19T16:57:00.000-07:00

Patrick Praj Mullarky died today around 1:15 PM, in his parent's arms. He was 13 days old. He was loved deeply in his short time among us.

Shortly before Pat was conceived, his aunt had a dream that her recently deceased father, (Pat's grandfather - Khun Tar) was walking down a beach holding hands with a little boy. It's a thought I've liked since I first heard it: Khun Tar sent him to us. When we return to Thailand, we will scatter his ashes along the same beach Khun Tar's ashes were scattered. So Pat can go back to Khun Tar, and can tell him of his adventures here with us.

We had so many people help us out today. The hospital was incredibly kind and generous. They offered to help us collect various keepsakes, since in his short time we didn't have a chance to get any. They helped us collect a lock of hair, get hand and foot prints on some cards and ornaments, and made some casts of his hands and feet.

His skin was a mottled red and white. When I asked the nurse about it, she said you see it on people who have raging infections, or have some neurological problems or damage effecting control of the capillaries. Poor Pat. He was so mottled and looked very tired. We decided to proceed with no further delays, so Pat could be free to go onto his next adventure.

Then the nurses started to remove his IVs and washed him up. We helped with his hair. Finally, all he had left was his neck IV with his morphine, chest tubes (clamped and cut short) ,and the ECMO connectors to his heart. In the room we had my mother, father, sister, and Tammy.

They picked him up off the table, and put him in our laps. We were in a small love seat they had brought in last night, with pillows on our laps. We held him for about 15 minutes, telling him how much we loved him, how glad we were to have had him in our lives, and not to be afraid.

Then we told the nurse to turn off the ECMO machine. He died peacefully shortly thereafter.

Everyone had a chance to say goodbye in his last minutes. We held him for some time after he died - it was hard to let him go, even though he was already gone. The nurses put him back on the table, and began washing him up. I took a sharpie out and drew a small heart-shaped mark on the inside of his left heel - an identifying mark so that if he is reborn we can identify him. Then the nurses called in a surgeon to close him up: remove the ECMO cannula and chest tubes, and close his chest. We didn't stay in the room for that part.

When I was going back to the room to dress Pat for his trip to the Funeral Home, I ran into Dr. Cohen. He gave me his condolences, and told me that we should in no way blame ourselves. Heart defects are not caused by anything known - they seem to be a random occurrence across all populations. He said that worry that this would happen again should not stop us from having more children. I was very grateful to hear this - it was something that was tickling at my mind. I thanked him for everything he had done, and let him know that I considered the care he got to be probably the best in the world.

Back in his room, Pat's color had returned to what it was when he was first born, and he looked more peaceful than he had for days. He was clean, and his chest had been closed. Except for bandages on his chest, you almost couldn't tell what a trial his poor body had been through. We dressed him in a puppy-dog jumper his grandmother had bought him, with a matching hat. It was very cute.

We didn't know what to expect in bringing Pat to the funeral home, but I didn't expect to carry him on my shoulder like he was asleep for over an hour. I offered Pui a chance to carry him, but she said she had carried him for 9 months, it was my turn to carry him awhile. It was very bittersweet. I got to carry and cuddle my baby boy ... but he was dead. It was so hard to think of him as not alive. He felt like my sweet little son in my arms. And in a way he was.

Pui's friends - Muek and Mew - were amazingly helpful all along. They contacted a Monk, and got him to meet us at the funeral home just a few hours later. The ceremony was small, but beautiful. Muek and Mew, their son and Khun Yai were there, as was Peter Luton, My sister Katy and her husband Rick, Tammy, my niece Ysabel and nephew Rob, and my parents.

Pat was swaddled in a blanket and comforter, in a large wicker flower basket set on a central table, with the small Buddha locket Elle gave him. That was where I last saw my son, as we left after the ceremony. He will be kept safe at the funeral home until Saturday, when we will meet the Monk at the crematorium to cremate Pat.

Once home, I found the video camera and managed to transfer all our video of Pat - all 25 minutes of it - to the computer. We watched them through. In the next few days I'll try to make a small mpeg or three of the best moments. I also have probably a thousand pictures of Pat's time with us - I plan to make a few Flickr sets of the best ones.

And now what I hope is the hardest day of my life draws to a close. If you have children, hold them dear while you have them. They are not ours to keep, but the memories we have of our time with them is.

We will have a memorial service for Pat on Sunday, that will be open to all. It will be 3:00 PM at Eastshore Unitarian Church, in Bellevue WA. Everyone is welcome. Please, no flowers or gifts - make donations to Children's Hospital instead.

A hard day, with help

2009-03-18T22:16:00.000-07:00

This has been one heck of a hard day. We have seen immense kindness and support, and help beyond what we could have ever expected.

When they were doing rounds on Pat, we asked if Dr. Lewis-Newby could talk to us about questions we had about when, and under what conditions, should we consider withdrawing life support. Just after they took Pat out for his C/T scan (quite the complicated process) Dr. Lewis-Newby met with us and we discussed not only when that decision needs to be made, but quite a bit about Pat's condition. She told us that Pat was a very very sick boy, and as an ICU doctor she sees many sick babies. She thought he had only a very small chance of surviving in good enough shape to leave her ICU, much less what problems he would face having made it that far. She discussed with us what our options might be, and how disconnecting from the ECMO might work. Doctor Mithya Lewis-Newby was compassionate, understanding, calm, supportive, and had all the information at the ready. We were both very impressed and thankful she was there.

Pui and I returned to our room. We knew when we came here that there was a chance that Pat would not survive to leave the hospital. Pui told me that she thought Pat was here to say "Hi!" before moving on. We were all together in some previous life, and he wanted to stop by and brighten our lives a bit before getting on with it. It does seem to me that he's been telling us since Saturday that he's ready to go. First the crash after the surgery, then the Lactic Acid, then the cranial bleeding. It's like he agreed to give the surgery a chance, but thought it wasn't for him and has been trying to let us know since that he wants to move on.

So we decided that we would remove him from the ECMO machine, and let him die naturally in our arms.

We called Pui's family, and told them what we were thinking. Khun Mea (Khun Yaay to Nong Pat) said that he was only here for a brief visit. He had snuck out of heaven to see us, and was being called back. She said we should draw a mark on him, and wish that he would come back to us when we have another child. We also called some Thai friends here to try and figure out how to get in touch with a Thai Buddhist temple. Then we went down to stay with Pat while we could.

While we were there Dr. Lewis Newby and Dr. Cohen came in, to tell us the result of the latest C/T scan. It was not good news at all. There was another sizable bleed, and two new possible infarction areas. The swelling in his brain was also increasing, and they felt that it had not reached it's maximum. Dr. Cohen told us that he thought there was virtually no chance that Pat would not have severe brain damage if he somehow managed to survive. He said he thought all of the damage we were seeing was a result of the trauma of the crash, the CPR, and the ECMO installation, which was in turn ultimately caused by the leakage in his tricuspid valve causing his heart to work too hard.

We let them know of our decision to let him go. We decided tomorrow would be the day: that would give us and the hospital time to prepare. Us, mostly.

We also discovered that the hospital would allow us to do something they normally do not let parents do with their ECMO babies - we could hold Pat. We leaped at the chance. It turned out to be quite a process - ECMO babies are not easily moved. It took 5 people and 20 minutes of planning and checking, plus furniture re-arrangement. But they did it, and Pui held Pat for an hour and I held him almost as long. I didn't think I was going to get another chance to hold my boy again, but I did, thanks to the kind patience of the hospital staff.

Speaking of the staff, I have to say that we found one nurse particularly awesome. Her name is Ann Neymeyer, and she watched over Pat four 12-hour days in a row. She was diligent, matter-of-fact, calm, capable, knowledgeable, and unfailingly watched out for Pat's best interests. In the days she was there - the roughest of his short life - he could not have had a better caregiver. We - Pui and I, and Pat - think she is nothing short of miraculous. At the end of the day when she had to change out all of Pat's tubes, figure out how to get him to the C/T and back, plus two ultrasounds and a doctor's conference, she apologized to us for not giving us more time during the day. For a woman with only two arms, she sure as heck gets a lot done!

But Ann is not the only person who has really been fantastic. All the doctors and nurses have been great, and we have never doubted for an instant that there was nothing that could have been done that wasn't.

When Pui's friends heard that Pat was going to be leaving us soon, they came to the hospital. There the grandmother (Khun Yaay) told Pui that many years ago she lost a son at 18 days old. As is a belief in Thailand, she drew a small mark on the foot of her baby before he was cremated, to help her identify him if he was reborn and she met him. Many years later, her grandson was born with a mark right there. We plan to leave a small mark on Pat. Perhaps some day we'll see a little boy with a birthmark there - and we'll wonder, and feel both happy and sad.

I wish with all of my heart that things had worked out differently. I wish we could have taken Pat home with us and loved and held him like all parents do. But we did have these days with him, and they have made everything worthwhile. We will not mourn losing him - we knew that was the chance we were taking, and really, how sure is anyone of a long life? - but we instead will treasure the memory of every moment we spent with him.

Now it is very late, and we are completely wrung out. And tomorrow promises to be even harder.

Tough days. 1 week 5 days old.

2009-03-18T12:12:00.000-07:00

Another day, another drama. This morning we slept in until about 8:30, and when we went down it was to see that the oxygen exchanger - his ECMO lung - was leaking. A yellowish foam was coming out of the base of the exchanger at a leisurely rate. Apparently, this happens when the filters get old. So they changed it out for one that is typically used for adults - a square box that does the same thing. They didn't use that earlier because it is harder to wean Pat off of the larger one - the larger size makes fine control more difficult, or something. Neither Pui nor I missed the implication that they expect he will be on ECMO for some time.

In some ways, the leak was good - his swelling has gone down dramatically, so he looks more like he did before surgery. Previously, his ears were being squenched together as the skin around them swelled. Now his ears stand out from his head and are fanned out like they should be. I never thought I'd be so happy to see ears.

In most ways, Pat appears to be remaining stable. His chemistries are consistent, his lactic acid levels are hovering around 7 (a high level, but at least it isn't jumping up off-scale), and his electrolytes etc. all appear to be good.

The main worry now is his neurological health. He's been off that paralytic medicine for a day now, but still hasn't moved. They suspect he isn't clearing it, so they aren't very concerned about that yet. They have reduced his morphine as well, because it can block neurological responses also. They are also worried that his pupils aren't responding to light, and they have contacted the Neurological team and scheduled another C/T scan of his brain.

It's a difficult time for Pui and I. I think we soured breakfast for a lot of people in the cafeteria as we tried to accept that Pat may have irrecoverable severe brain damage. He hope he doesn't, but as time goes by the odds diminish. On the way to breakfast we met a woman whose 6-year-old had walked into surgery, and now would definitely never walk again, might not ever move again, and may not even survive. We talked for a little while, and agreed we were all in a difficult place. I don't know if it's better to have a newborn in this situation or a child you had been with for years. I don't think it really matters - we're parents with desperately ill children; there is no better way to be in this position.

All we can do is what we have been doing: wait, hope, and shower Pat with love and support.

St. Patrick's Day - evening. 1 Week 4 days old.

2009-03-17T20:53:00.000-07:00

Today was both good and bad. Pat appears to have stabilized his lactic acid levels - his dialysis brought the levels down to 9 (the scale ends at 20, and he was above that last night), when they turned off the dialysis and since then his levels have been ever so slowly decreasing - they are now 7.5, or thereabouts. Also, his heart appears to be regaining some strength: the beats per minute and the strength of the beats are improving. Finally, a Doppler ultrasound of his intestines showed good blood flow down there.

Unhappily, the C/T scan and the ultrasound show that there is some minor bleeding in his brain, his brain is showing signs of swelling, and there is an area in the ultrasound that some people seem to think is an area that was damaged last Saturday night when he crashed. Others don't seem to think that the images mean that. Also, his kidneys are still not working. The doctors say that is not unexpected, and that they think dialysis can be used to carry the load for the kidneys until they can get a chance to recover themselves.

So why is all of this damage showing up now, days after he crashed? Apparently, when they cooled Pat down after putting him on the ECMO, it gave him a head start on the healing. Now that he is back to 36C, the swelling and other problems are becoming apparent.

It's a little hard to see our little boy, laying still and all swollen with the fluids he's been pumped up with. He looks like a very fat little baby. Very fat. but it's all fluid. They stopped the paralyzing medicine earlier today, but with his poor renal function and dialysis only running a little, it will be "some time" before he starts to move a little. We don't want him to move much - not with two tubes sticking out of his chest cycling all of the blood into and out of his body.

It was quite a performance earlier this evening, when we watched the nurses change shifts. Nurse Ann (whom we really like) spent almost 40 minutes reviewing all of the history, current thinking, every trace, medicine, blood chemistry, test results, IVs, and ECMO with her night-shift replacement. I was actually a bit surprised at how well I was able to follow things: I have unwillingly learned a heck of a lot these last 11 days.

All in all, he seems to be doing better now than he was yesterday. Pat is a very sick little boy, but at least he isn't an urgently very sick little boy. At the moment.

Pui and I are now getting ready for bed, and hopefully some sleep.

St. Patrick's Day - morning

2009-03-17T08:03:00.000-07:00

Pat has been hooked up to a new ECMO and a dialysis machine all night, and appears to be recovering a little. His lactic acid levels are still high, but no longer off-the-chart high. The nurses and doctors here are doing everything they can, and Pat seems to be cooperating. He is still desperately ill, but at least he's stabilized for now.

Somehow Pui and I actually managed to sleep last night, though not a lot. I figure this roller-coaster ride is far from over, but at least right now we're not going down. There are ups and downs to come: we are just hoping that the trend becomes more up than down.

Someone defined the difference between hope and optimism for us. Hope is when you examine all the data and alternatives, and find cause for thinking something good may happen. Optimism is when you ignore facts and data and decide that all will be well. We have hope Pat will get better. Pui pointed out that they aren't necessarily mutually exclusive - you can both have hope and be optimistic. So we will be hopefully optimistic - optimistically hopeful? - that Pat can and will recover. Besides, it's St. Patrick's Day - if there was ever a day to trust the luck of the Irish, this is it. Especially if your name is as Irish as 'Patrick Mullarky'.

Dire straights

2009-03-16T21:15:00.001-07:00

It's now a little past 9 PM. They didn't do a heart catheter on Pat. The C/T showed no problems with his brain or intestines, and even gave them a decent enough a look at his heart that they decided they wouldn't need to catheterize him.

The bad news is that his lactate levels have continued to rise unchecked. When we returned to see Pat, the Critical Care Doctor (Dr. Lewis-Newby) and Dr. Permut (Dr. Cohen's associate) waiting for us. They explained that his lactate levels were off the scale high, and that is not good news. They are doing everything they can, even changing out the ECMO, but they really don't know what is causing it. Dr. Permut thinks it is probably related to the intestines, as he felt any damage that would create that level of lactate would be visible in the brain, but not necessarily in the intestines. But that's about all they can figure out about what is happening.

Both Doctors were very good. They let us know what they were thinking, what they have tried, and will try, and how good Pat's chances are. At this point, he's in dire straights. Basically, it's all up to him now. They are doing everything they can - everything that anyone could do.

The brightest point was when Dr. Permut said that they have had children recover from situations this dire before. We aren't giving up, and won't give up.

Pui and I are out of the area while they trade out the ECMO for a new one, but we'll be back once they finish and we can get back into the room. It's going to be a long night.

Pat just can't catch a break. 1 week 3 days old

2009-03-16T17:23:00.000-07:00

Pat is in C/T right now, and will go to the catheter lab after that. This morning his lactate levels started to rise, and around 11 AM his nurse (Nurse Ann - we just love her) called some doctors over after running the test several times. A doctor explained to us that the lactate levels is a measure that indicates when something isn't getting enough oxygen.

There followed an ultrasound scan, an X-ray, and another ultrasound. At the second ultrasound Dr. Cohen and Dr. Permut joined the discussion, which went on for some time while Pui and I watched - very alarmed and not following what they were saying at all.

Dr. Cohen came to us as soon as the discussion started to wind down, and explained several things to us. First, they don't know why his lactate levels are high - they scanned his brain and intestines (prime suspects, apparently) and didn't find anything. Also, they still don't know what started the collapse on Saturday. So they planned to do a C/T scan to see if they could find what tissues aren't getting enough oxygen, and a heart catheter to see if the repair is as solid as it appears in the ultrasound, and if the problem might be that the tricuspid regurgitation is greater than they thought. (The tricuspid valve is the only working valve inside Pat's heart, between the right atria and the the right ventricle.) Dr. Cohen told us that the catheter is basically a fishing expedition: they don't really know what they are looking for, and hope to recognize it when they see it. It seems clear the C/T is the same - they are just looking for anomalies.

He also raised the possibility of Pat needing a heart transplant. It's basically a last option, and one they won't seriously consider until all other options are ruled out. If the problem is his tricuspid, he has few options. He said that in babies this young, the flaps of the valve are like tissue paper - too fine and fragile to operate on. Even if we seriously consider a transplant, Pat will have to get much better than he currently is. We pray that it never gets to that point.

Getting Pat moved is a major undertaking: his ECMO machine and all of his IVs all had to be carefully unplugged from the wall, and all the leads to the stationary monitors had to be moved to temporary ones. When they finally wheeled him out to go to C/T, one of the nurses said "I don't think we've ever moved a baby with this much attached. We should get a picture." I didn't take one - I was too numb.

So now we are waiting. It's nearly 6 PM Monday, and the tests should take at least 90 minutes to run and who knows how long to review. Poor Pat - he just can't catch a break. It feels like it's one damn thing after another. We just want him to get better, and all we can do his OK what the doctors want and talk to him and touch him whenever we can. We have a video of him looking up at us and then falling asleep in him mommy's arms, from the night before his surgery. I think of it all the time.

The kindness of strangers. And Friends. 1 week 2 days Old

2009-03-15T20:34:00.000-07:00

Patrick is "Stable". No one is saying much about prognosis, waiting to see how he recovers after a couple of days on the ECMO. He does appear to have at least minimal organ function in his liver, kidneys, and brain - good news. But not a guarantee. We are hoping and praying as hard as we can for the best outcome.

While the medical care here is outstanding, what has really made an impression on us today has been how kind everyone is.

We've been receiving email and comments by the bushel, including some from people that have been in the same or similar circumstances. It's good to know that while it is risky, many kids have been through this and come out OK.

In the early afternoon, some Thai friends of ours stopped by unannounced, with fresh fruit. Pui was able to speak Thai beyond a grade-school level with a very nice complete family - Mom, Dad, Son, and Grandma. They have some local Thai restaurants that are really good - Noppakao in Juanita and Silver Spoon in the Trinity area of Redmond.

While we were all talking, the Mom of the baby Pat shared a room with the first night after his surgery came. She had a little angel with Pat's name on it. She gave it to us with her best wishes, completely out of the blue. Very thoughtful. We later hung it beside Patrick along with a Buddha image given to us from our friend Elle back in Bangkok.

I went back to sit with Pat some more, and after a short period of time the CICU desk called that there was a package there for us. I went and found a bag full of food with my name on it: "Rob Mullarky, father of Patrick Mullarky". I found no "from" message. The food looked really good, though I still didn't have much of an appetite. Both healthy and yummy, a rare treat. It felt really nice receiving it, actually. A little like a Secret Santa gift after a bad day.

I put the bag away and returned to Pat, musing about how nice people were, when I got paged again - another visitor. This time it was the Rev. Peter Luton, the man that married Pui and I not quite two years ago. He sat and talked with me for a little while, and we were shortly joined by Pui. Peter was great, as always. When he left us we were both feeling better.

After spending a little more time with Pat, I went upstairs to take a nap. I slept like a log for about three hours. When I woke up I checked my email, and discovered that our Secret Santa was Wyndi and her husband Steven (not David! Sorry about that! - Rob) the parents of Izabell (see her blog here). Pui and I were beginning to feel a little hungry, so we decided to try some of the food they brought us.

It appears that, when you are stressed and scared, "a little hungry" actually means "ravenously hungry". The food was as delicious and healthy as it appeared. Pui took one taste of the first dish and said "They must know I'm Thai." Bullseye, guys. ;-)

Just now Pui just told me that they are going to start Pat on Lasixs (a diuretic) to try and coax his kidneys into working a bit better. The doctor told us that this is not unusual behavior for a baby's kidney after a cardiac arrest episode like he had. I find it both reassuring and a little disturbing that they know what is unusual for infant cardiac arrests.

Pui and I plan to sit by Pat a little longer tonight, then turn in before it gets too late. We are feeling a lot better today than we were yesterday at this time. Our baby is in dire straights, but there is hope, and he is in the very best care. Heck, just look at the picture below:

If you look closely, you can see Baby Pat laying on his back in the center of the spider's web of tubes and wires. The ECMO unit is the stand on the right. I had envisioned it as a big box, maybe with a few tubes feeding into it's mysterious innards. In fact, it's a number of components all plumbed together with tubes and watched 24/7 by a dedicated technician. Very impressive.

If you don't mind alarming photos, the next picture is what Pat looks like now. Or rather, as he looked at about 1:30 AM last night, but there has been little change since then.

The ECMO tubes are the big red tubes. They take out, oxygenate, and pump back in his blood. He is very swollen - if you leave your hand on his head with just a little pressure, after ten minutes or so you will squeeze some of the fluid out of his skin there: when you take your hand away, you leave an impression. It's more than a little unsettling. I've started moving my hand every minute or so. His little ears are all squeezed together by the surrounding skin swelling. When he's older, he going to have to become pretty darn overweight before I start becoming alarmed.

OK, about time to go sit with Pat awhile and then say goodnight.

Scary, scary night

2009-03-15T01:28:00.000-07:00

First, Pat is still alive.

There is some question about whether he will last the week.

Pui and I had gone home at about 7 to try and get some sleep. Grandma was staying at the hospital. At about 9:40 she called us, telling us that the CICU desk called and said that Pat's parents needed to go there. I was so unsettled I dropped the phone. I rousted Dad out of bed and got him to drive Pui and I to the Hospital: was in no condition to drive.

It was an incredibly long 15 minutes to get there.

Once there, we learned that Pat had crashed a little earlier: his heartbeat and breathing had essentially just stopped. The doctors manually massaged his heart for almost an hour, until they got the team and equipment together to put Pat on the ECMO machine. (ECMO - extracorporeal membrane oxygenation - is basically a heart-lung machine.) He told us that they were trying to hook him onto the machine as we spoke, but that we should be prepared: usually children are put onto the machine in much more controlled circumstances, with more preparation. Also, given the type of sudden crash and prolonged CPR, there was a chance of severe organ damage.

About an hour later, the doctor returned to tell us that Pat had been successfully plugged into the machine, and Pui and I could see him in a few minutes. And I thought the drive in had been long.

The doctor (Dr. Mazor, a straight-shooter who has the good taste to share my first name) explained to us the benefits and dangers of the ECMO, and we discussed possible outcomes. He was encouraged that the initial chemistry from the hook-up showed that his organs hadn't all stopped working, and appeared far more hopeful than he had been an hour earlier. He hadn't been pessimistic earlier, but he was careful not to give us much in the way of expectations.

We were able to see Pat about 20 minutes after that. He has a new bug red tube coming straight up out of his chest, and another one going in at a flatter angle. He is considerably more swollen than he was before. He is completely still because of the drugs he has been given to stop him moving and keep him from feeling any pain. They have lowered his core temperature several degrees Celsius, because it appears that helps slow down metabolic loads and gives him more chance to heal.

We will know in the next two or three days if he will survive this setback. It may take longer to discover if there has been any permanent damage to some of his other organs, most notably - and terrifyingly - his brain.

It's now 2 AM, and Pui and I are going to try and sleep. Not the kind of night we were hoping for. :-(

Norwood-Sano recap - or - WHAT happened to Pat?

2009-03-14T14:58:00.000-07:00

I've mentioned in the blog before that the surgery Pat is called the Norwood-Sano. What the heck is that?

Normally, a human heart pumps blood Left Heart -> Body -> Right Heart -> Lungs -> Left Heart, etc. But without a left ventricle, Pat's heart can't work that way. So the doctors here did four things.

First, the ductus arteriosus (the DA) - the connection between the Pulmonary Artery (the artery from the right side of the heart) and the Aorta (the artery from the left side of the heart) - is cut. That was what was keeping him alive, but after this surgery it's not needed anymore. All babies are born with the DA open, and it closes usually in the first week after birth. Unfortunately, that was what was keeping Pat alive, so his was being kept artificially open using a drug called prostiglandin. Prostiglandin has other side effects (poor temperature control, discomfort, etc.) and can't be kept up for long.

Next, the Aorta - normally the largest artery in the body - is very small for HLHS babies. The doctors cut his undersized aorta off of the heart and cut a slit along its length. They then sewed on tissue to make it a much larger artery.

Third, they sever the Pulmonary Artery, sew shut the side opposite the heart, and sew the newly enlarged Aorta onto valve the Pulmonary Artery used to attach to.

Finally, they install a gore-tex tube from inside the right ventricle and attach it to the Pulmonary Artery. The picture below (shamelessly lifted from www.pted.org) shows what the heart looks like after the Norwood-Sano is complete.

This is what Pat's heart looks like now. That's a big change. But after recovery he will be able to live without prostiglandin, and will be able to get big enough for the next procedure, the Glenn Shunt.

In the Glenn shunt they remove the gore-tex tube, sever the Superior Vena Cava, and attach it directly to the pulmonary artery. The picture below - lifted from www.cincinnatichildrens.org - shows the shunt on a HRHS heart. It labels the Superior Vena Cava as "3". The "4" is a Blalock-Taussig Shunt (B-T Shunt) being removed (The Sano Modification is now usually used instead of B-T for HLHS babies). After this surgery, all the blood returning from Pat's head and shoulders will go straight to the lungs without going through the heart.
Finally, when Pat is between 3 and 5 years old, the final surgery will extend the Inferior Vena Cava using more gore-tex ("5" in the chart below from www.cincinnatichildrens.org) past the heart to the pulmonary artery. Pat will then have a two-chamber heart, and may not ever need another heart surgery. We hope.

Post-Surgery Day 1 - Puff Puff Baby: 1 week 1 day Old

2009-03-14T11:27:00.000-07:00

This morning Pui and I went in and saw Baby Pat after what was for me a good night's sleep. Pui, not so much. She's sleeping now while I catch up on the blog. We came to the hospital and met Grandma at the cafeteria - Grandma slept here last night, something both Pui and I were very comforted by. We ate breakfast with a HLHS baby mother named Dena. Her boy is not quite 2 weeks ahead of Pat, and they are talking about being able to take him home Wednesday. They have our best wishes.

After we ate, I went straight to see Pat while Pui pumped some more milk. The knock-out anesthesia has worn off of Pat, but he is on Morphine and feeling no pain. He's moving a little here and there, and occasionally makes sucking motions with his lips. Keep it up Pat - we want to feed you through your mouth just as soon and as much as we can!

I have some pictures from yesterday to post. The first one is Pui and I wishing Pat good luck just before he was wheeled into the OR:

The next picture was taken around eight hours later. This is Pat in the CICU. You can see how many tubes and wires are there. Each one has a specific purpose.

Next, another shot of all the equipment Pat is hooked up to. (Pat is the pinkish bit in the lower right of the picture.)

The next picture is a shot of Pat's face. You can see how puffed up he his. This is normal for after a surgery as major as this. That's what I was told, anyway, and I believe them: they said it like they've said it a thousand times before.

Finally, an overall shot of Patrick. It's a little alarming. The ovoid area on his chest is a piece of rubber they put on over the opening in his chest. The three tubes coming out are draining fluids from his chest. He has an IV hooked into arteries on either arm. The tubes that are making sure he breathes go in through his nose. Looking at this picture, you can get a pretty good idea how major this surgery really is.
It's amazing that they were able to change so much inside such a little guy. They made some pretty big changes to his little tiny heart. It's scary to see our precious little boy looking so ... uncomfortable, but this is necessary if we are going to have him with us for years and years. And he is not uncomfortable - they have him on morphine, and the nurses are very aware and concerned that he not suffer.

Speaking with the nurse, we were told that Pat won't be aware of us much today, and that we should take care of ourselves. If taking care of ourselves means being in the room with him, or if it means just laying down and sleeping all day, we should do that. We plan to alternate, with eating and pumping milk in there as well. And writing in the blog for me. In the next few days Pat will begin to recover, will open his eyes and become more aware of his surroundings, and we want to be there for him at that time. And not be exhausted wrecks.

What a day: 1 week old

2009-03-13T21:15:00.000-07:00

It's now after 9 PM, and Pat is doing well. He's back in the CICU, with many many tubes and wires attached. He's puffy and very still - he only moves to breathe, aided by the respirator. Actually, the respirator is pretty much doing it all - he's so drugged he can't breathe unaided.

It's been a long, eventful, stressful, and exhausting day. Pui and I are about to go to sleep. I have some photos, but I'm too tired to post them now. Tomorrow.

The day has been tense and tiring, but more than worth it. Pat's heart has been re-plumbed so that he can live, and now all he has to do is hold on through recovery. Then he can start getting ready for the next major surgery - but nothing will ever be as dramatic or quite so risky as this first one. Pui and I will be able to sleep well tonight.

Norwood Day! Pat is in surgery.

2009-03-13T08:35:00.000-07:00

3:00 PM

Our aggressive waiting has paid off. We spoke with Dr. Cohen almost an hour ago. Pat is out of surgery, and they are getting him transferred to his new CICU room. Dr. Cohen said the surgery went smoothly, and there were no problems or issues. He did say that Pat is not out of the woods yet - he has just had a very major surgery and a significant physiological change, and has a lot of healing and adjusting to do. He will be swollen and puffy and utterly still. But that's a good thing.

His chest is still open, and will remain that way until the swelling goes down. It's not an open wound - there is a covering over it - but it also makes it easier for the pacing wires and chest tubes still in there.

We are now putting our mad waiting skills to use waiting to see Pat in the room he'll be in for the next few days.

Our little boy has gotten this far - but he still has a distance to go. We would have spared him all of this if we could, but we want to have him in our lives for years and years, and we have to do this if we want that to happen. It's worth it.

12:20 PM

We just got another page. The receptionist passed on the message that the repair is almost complete, and they will begin the re-warming process shortly. They induce hypothermia to do the repair, and Dr. Cohen told us that the re-warming process is long, slow, and takes a variable amount of time.

We are very glad to hear that the main part of the surgery appears to be over, and are going to re-double our efforts at waiting.

10:15 AM

I just got the first page. I called the NICU desk when the pager went off, and the receptionist told me we were paged to inform us that little Pat is all hooked up - he's intubated, has his lines all in, and sedated. Now the surgery proper is beginning.

So far, so good. Now we go back to our task: waiting.

8:30 AM

Pui and I got up at 5 AM, even though our alarm was set at 5:30. We spent a lot of the morning with Pat, until the anesthesiologist came for him at about five minutes before 8. We got to give him a quick kiss and orders to cooperate with the nice doctors, and we watched him get wheeled into the OR. Now we are finally eating breakfast. Trying to eat breakfast.

We will get paged four times. Once when they have all of the tubes put into him - for samples, for blood control, for drugs. Once when they put him onto the Heart-Lung machine. Once when he's taken off the heart-lung machine, and once when everything is finished.

The waiting has begun.

Big news - Tomorrow is the big day! 6 Days Old

2009-03-12T13:34:00.000-07:00

We had a fairly unsettled morning, followed by an exciting afternoon.

But first, the big news: Pat is going in for his surgery at 8 AM tomorrow morning. The surgery will last 3 - 5 hours (or possibly longer), and then he will be in essentially a drug-induced coma for, in the surgeon's words, "several days". He said not less than two and very unlikely to be more than 7. He told us that the surgery was well understood, and he thought the worst case was that he would come out on ECMO , essentially a heart-lung machine.

We are both terrified and very excited. Our baby is a strong little guy, and we are hopeful that this is the first successful step in giving him the chance for a normal life.

So, what is ECMO? It stands for "extracorporeal membrane oxygenation" (Duh). It is apparently a device that both circulates and oxygenates blood.

OK, back to the narrative. I went downstairs to see Pat after we ate breakfast at the Hospital, only to discover that he wasn't in the same room. He had been moved to a room in the CICU (From the NICU) overnight. (What is the CICU and NICU? NICU is the Neonatal Intensive Care Unit, for newborns. The CICU is the Cardiac Intensive Care Unit, for cardiac patients. Pat qualifies for both.) Apparently, the room he was in was a single room, and they had to make room for a baby that needed isolation. The nearest ICU room available was a CICU room just around the corner, with space for two patients. There is another child in the other half of the room (separated by a curtain) but we don't know much about her.

When I found the room Pat was in, a nurse was doing a sterile procedure and I couldn't go in. She was adding another PICC line, because the one Pat had was beginning to show signs of a reaction. So I had to go away for an hour or so. When we returned, it was to learn that the installation didn't work.

At the rounds, we heard the team go back and forth on whether or not it would be necessary to put in another PICC line, or another IV line, given that he would likely have his surgery tomorrow. You can imagine that our ears picked up at that comment. Someone had mentioned something like that a little earlier, but we've been hearing so many things I didn't really believe it. After rounds, one of the cardiology doctors came back and told us that he was indeed going in tomorrow, and the surgeon would likely come talk to us later in the afternoon.

In the meantime, I got another chance to hold Pat. For 90 minutes I got to hold him in my arms. It's amazing that doing nothing but holding a little baby in my arms could keep me so utterly enthralled so long. Heck, I get bored and have trouble keeping my attention on a 30-second TV commercial, much less a passive little sack of protoplasm for 90 minutes. A very cute, sweet, adorable, fascinating, and enchanting sack of protoplasm. I was sad when it ended.

Pui and I waited for the surgeon to come, until at last Pui could handle it no longer and left for the bathroom. She was gone barely 60 seconds when Dr. Cohen came by. Naturally. He was very nice and waited around for Pui to return, at which point he talked to us about the surgery, the timing, probable outcomes, where we should wait, etc. He answered our questions, and then we signed the release forms. Tomorrow at 8 AM he goes into OR. I wonder how much sleep we'll get tonight. "If" might be more accurate than "How much".

Before we met with the surgeon but after we learned he would be going in to the OR tomorrow, we (That is, Pui) realized that we had an appointment with the US Government tomorrow, so Pui's biometrics could be measured. We have three appointments for the same thing - one tomorrow, one 10 days later, and another 7 days after that. We had all three appointment notices, plus the surgical release. We called the Government help line to ask about the discrepancy, and their reply was to go to the first appointment but bring all three appointment notices. My Mom had the idea of calling Pat's Aunt Tammy (Tammy Mullarky) as probably the best person we could ask to help us out. We both agreed, and Mom called her while Pui and I waited for the surgeon. After we finished that, I talked to Tammy and was delighted to learn she was willing to help out. She came over to the hospital to collect our documents, and got to meet little Pat. He was in a particularly cute position - on his tummy with his little butt in the air. We are so thankful that we have so many people willing to help us out. If Tammy had been out of town, there are probably a dozen other people we could ask. Fortunately, we didn't have to. It's very reassuring to have Aunt Tammy on the case - she will do a great job for us, guaranteed.

New friends: Mirabel Alice the Cute

2009-03-11T22:27:00.001-07:00

The other day Cristy came over to me and introduced herself. I had seen her posts on the Seattle Conjenital Heart Defect group, but had never met her. She had her daughter with her - 4 month-old Mirabel Alice, another HLHS baby. And she is cute as a button. She is post-Norwood but pre-Glenn. She is interactive, looks at whoever is speaking (with big eyes) and when you smile at her she smiles back. She looks and acts like any normal baby girl, something Pui and I find very comforting. You can see a lot of pictures of her on her blog (Linked here) but I thought I would post the pictures I got. My only regret is I missed the smile that was on her face just before I took this first picture.

The second picture I think is cute also. I can't think whether it looks like I just took candy from her (I didn't! It was mine to begin with!) Or if she's just getting a head start practicing on her "Please can I have a car for my 16th Birthday" expression. ;-)

Out from under the lights! 5 Days Old

2009-03-11T22:10:00.000-07:00

Pat was doing well today. His bilirubin is down, so the blue lights and the nasty eye protection he had to wear (and kept trying to push off) was removed. He still needs to be in the tent though - being in a low oxygen environment is better than having to be on yet another drug. I just hope he doesn't develop an unhealthy attachment to plastic bags.

I went through and posted a bunch of new pictures on Flickr - you can see them by clicking on these words.

At this time we still aren't sure exactly when the surgery will be. "Sometime next week" is the official line. It's nice that they aren't worried about him being OK until then, but it would be nice to know. I think we won't have anything definitive until after the surgery team decides on the week's schedule Monday morning.

Until then, we can continue to hold him outside the tent a little, and hold his hand and touch him in the tent (with the plastic sealed as best we can around our arms) the rest of the time. His skin is so soft, and he seems to appreciate the contact: we can see how his breathing seems to be more stable when we hold or touch him. Not that we wouldn't spend all day there every day just to look at such a doll, but being able to touch him is a huge benefit. I think it helps Pat too.

Picture of Pat with his Daddy

2009-03-10T20:50:00.002-07:00

Finally, I got home and ate, and now am downloading pictures. While I was holding Pat, I needed to keep a tube with a low oxygen mix near him to help keep his SATs low (SAT is a measure of oxygen in the blood). The first picture is Pat in my arms.

The next one is me holding the baby.

Wait a minute ... that's my baby, but who's that bald guy holding him? That's not what my picture with my son should look like! It should look like this:

Yeah, that's more like it!

The next picture was taken at the moment I realized that, yes, I am indeed really a father now.

Finally, here's a picture of the sunset, with the day's last rays shining down on our little boy... in his plastic tent. The sun did shine directly on him his second day - well directly on him through one window.

Daddy's turn! Day 5

2009-03-10T17:25:00.000-07:00

Today I got to hold Pat for a bit over 45 minutes. I held him for a moment just after he was born, and then not again until this afternoon. When he was born, the day was sunny and cloudless all day. The next four days we had clouds, rain, sleet, snow, and freezing temperatures. This afternoon when I help Pat, the clouds disappeared and the sun shone down from a clear blue sky. Clear and blue from what I could see out the window, anyway.

Today he is under the lights all day, and is in his tent as well. He needs to be in a reduced oxygen environment pretty much all the time now, so when I held him I had to hold a gas tube before his face - a small price to pay. His bilirubin was down a little, which along with his increasing age means everyone is less worried about it. But he still gets to bathe in blue light. But it's OK - he's much more peaceful now. He is no longer running a temperature, and appears to be more comfortable. Mostly he just sleeps.

Talking with the people here, it appears that next Tuesday - a week from today - will be the likely day for his surgery. I think that's more of a guesstimate than a firm estimation, but it's better than "sometime next week".

I'm having trouble downloading pictures here this afternoon, so later tonight I'll post some pictures, including what will no doubt become an iconic father-son image.

Today's Cute Picture

2009-03-09T21:07:00.000-07:00

Bloggers seem to occasionally post cute pictures - so here is an obligatory cute picture.

Still not sure when: Day 4

2009-03-09T15:10:00.000-07:00

This morning I woke up early and drove in. I was near the hospital when Pui called me, saying that she had missed me last night. I had to ask her not to make me cry while I was driving - I too had a nearly sleepless night and missed her a lot.

We were there for the cardiologist's meeting, and learned that the team was thinking of having the surgery next week. So we still don't know when it will be - it could be late this week if another baby gets sick and can't go to their scheduled slot, or it could mean that we have at least a week to wait. We will just have to wait and see. We did hear that the surgical group is currently thinking that the standard Norwood/Sano procedure would be appropriate, even though he has moderate tricuspid regurgitation.

His bilirubin rose a little, so he remains under the bilirubin lights. Also, his SATs (Oxygen Saturation levels, I believe) keep creeping up and so he's under the low oxygen tent today. He's gained 119 grams (4.2 oz), a 4% weight gain in 3 days. Everything else seems to be going well, and the we choose to be encouraged that the doctors aren't worried enough to schedule surgery as soon as possible.

Pui and I did get a chance to touch him for about 40 minutes while the nurse was busy with other things. He really likes having something pushing on his head and his feet. The last picture is Daddy calming Pat. Well, Daddy's hand anyway.

Waiting for the doctors: Day 3

2009-03-08T22:21:00.000-07:00

The last two days have been both eventful and boring. Eventful in that we have learned a lot, boring in that there's not a lot for us to do. Mostly, we have been rejoicing at having Nong Pat to coo at.

Saturday morning I got paged at about 9 AM - the team wanted to install a PICC - sort of like an IV, except they run a line from an arm or a leg into a vein, and feed the line deep into the cardiovascular system. It isn't easily pulled out, and it delivers drugs and fluids deep into the system. They had been trying to install a second IV both at the UW and at Children's, but without success - Nong Pat's veins are very small and fragile. He already had several small pokes on his hands and feet, and the thought of one that would last a long time had strong appeal. They installed the PICC in his foot, and have been feeding him intravenously through it. When I was allowed back in (They didn't want me there for the PICC installation - I assumed it's a sterile procedure, what with all of that tubing going into his veins and stuff) Pat was under a little plastic tent. They had him in a low oxygen environment to help his circulation. It seems counter intuitive to me, but everyone was quite matter of fact about it. Fortunately, within a few hours they decided it wasn't needed.

The drug that is keeping him alive - Prostiglandin - has some side effects. It makes Pat cranky, and gives him a slight temperature. His crankiness goes away when he's held, so we make the painful sacrifice of holding and cuddling our baby every chance we get. It's hard, but we're willing to make the sacrifice. ;-)

We don't have the chance to hold him much - he's all tied into several tubes and wires, so moving him his a bit of a production. When Pui and I went to dinner, his Grandma Milly stayed and held her grandson for about 45 minutes. Eventually, Pui and I went home to get some sleep. I planned to write in the blog, but it was late and I was just too tired.

This morning we arrived just too late for rounds, but there wasn't much new to learn. The main thing we learned was that Pat's bilirubin was a little high, so he had to spend most of the day under the bilirubin lamp, wearing his little designer eye shades. (What is bilirubin? It has to do with red blood cell metabolism and is what makes jaundice and some bruises yellow. I hear.) The bilirubin light is a blue light that they put over him that somehow helps lower his bilirubin level. If he was a girl, would they use a pink light? (Just kidding). But it meant that we didn't get much of a chance to hold him today. Pui got two chances, when they were changing him and taking care of his connections and IVs. The nurse was very kind to let her hold him those times.

It appears that they are keeping Pat a little dehydrated, so that his heart has an easier time of it. He also is not allowed to eat, which is why he is being fed intravenously. That is apparently standard for Congenital Heart babies. He is slightly blue in his feet, but otherwise appears to be doing quite well. But that isn't helping him get rid of his bilirubin. They also put him on a medicine that helps his circulation, so hopefully we won't have to go back into the tent.

One thing the last two days has made clear is that Pat really does need surgery. They are working hard to keep him stable and thriving, but it clearly isn't easy - or sustainable.

My father had come down with a cold in the morning, so he didn't go to the hospital today. But my sister Katy did, and she was a huge help. She was with Pat for something like three hours while Pui and I were able to eat, nap, take care of nursing and other needs.

Pui decided to stay at the hospital overnight, and I came home to gather food, clean clothes, and work on the blog. A Long day.

Tomorrow, Pat's case will go before the surgical and cardiological team. We'll learn what they decide the best course of action will be later in the morning or early afternoon. The uncertainty will end, and then the waiting for the surgery will begin.

More Pictures of Pat: Day 1 (Barely)

2009-03-07T00:01:00.000-08:00

I couldn't sleep after saying 'goodnight' to Pat and leaving him alone in an NICU, so I put together some of the photos we took of him today and posted them here, in our Flickr site.

It was a very long day. Pui had a looong night, and began serious labor (with pushing) just before 9 AM. When noon was approaching, Pui - and everyone else in the room, but mostly Pui - was exhausted. The doctor suggested we try a vacuum or forceps. I think they were beginning to think that an emergency C-section would be needed: Pui was that exhausted from a night of hard contractions. We agreed to the forceps, and shortly before noon the room started to fill up with people. There was several people from the NICU, the team that looks over the baby, several nurses, several doctors, people all done up in scrubs (prepared for an emergency C-section, I think - I was too tired to ask). Then Dr. Sue, with Dr. Brown watching, used the forceps to pull Pat out during a contraction. Whew!

I clearly remember Pat coming out, but I can barely remember cutting the umbilical cord.

He was examined, cleaned, weighed, and handed to me. I didn't really know what to do, so I did what any good first-time father does in this situation - I handed him to his mother. Shortly after that, Pat was taken to the NICU (Neonatal Intensive Care Unit) where he had baby's first IV installed. His blood oxygen levels, pulse, and respiration rates were monitored as the Prostiglandin E - the chemical that will help keep him alive until his surgery - was introduced via Baby's first IV. Everyone who worked with him commented on how strong and healthy he was. When he was unhappy, he gave everyone a demonstration of how healthy his lungs were. And although he had bluish hands and feet at first, by 4:00 he was literally all pink.

Pui had a chance to visit Pat in the NICU twice - once about 40 minutes after birth, when she was in a wheel chair, and once about 4 hours after birth, when she walked over. The second time Pui got to nurse Pat. He didn't get any milk, but he did latch and suckle. He is truly our child - born to eat. :-)

At around 5:00 a mobile NICU unit from Children's hospital arrived, and I went with pat to the new hospital. I was exhausted and not thinking real well, so I was very glad when my Father and Sister managed to find us at the reception desk of the Children's Hospital NICU. We saw Pat situated, and talked with one of the Cardiologists. Dad and Katy went home, and I tried to sleep. But I couldn't. So I went down and said goodnight to Pat. Leaving him there alone was one of the hardest things I have ever done. But there is tomorrow, and all the tomorrows to follow.

Introducing ... Patrick!

2009-03-06T15:49:00.000-08:00

Here is Patrick about ten minutes after being born. We have some other pretty good pictures, but this one wins the initial "I LIKE that one!" contest.

Happy Birthday Pat!

2009-03-06T12:39:00.000-08:00

Patrick Praj Mullarky was born on March 6, 2009 at 12:14 PM. his weight was 2964 g, or 6 lbs 8.4 oz,

We are delighted to welcome him into our lives.

Will we see Pat today? 39 weeks 3 days in utero

2009-03-06T07:33:00.000-08:00

We certainly had an eventful night! At 8:30 PM, Pui was given cervadil, and in an hour some seriously uncomfortable contractions had begun. She got sick a couple of times, and lost the cervadil. The contractions became increasingly uncomfortable, almost unbearable, and by the time her 1 AM exam came she was really hurting. She was measured as dilated 4 cm, station -1. She decided she wanted an epidural, and by 2:10 AM it was in. At 2:13 AM the nurse pulled a cord off the wall, and 15 seconds later 5 more people came into the room and started busily changing her IV, rolling her on her side, giving her O2, etc. Including the Anesthesiologists, there were 8 people in the room. After 3 or 4 minutes, most of them left - it seems that sometimes the initial change the epidural makes will depress the fetal heart rate, but it usually recovers quickly when those measures are taken, and Pat's did. The epidural also had quite an impact on Pui. within minutes she was far more relaxed and smiling - two things she hadn't been in hours. At 2:45 the baby's heart rate dipped again, and Pui spent the rest of the night on O2. At 5:45, she was examined again, and it was determined that she was at 8 - 9 cm dilation.

With all of this going on, I didn't think I'd get any sleep, but I did get a little. Snored too, Pui tells me. Nothing like the Earnest support of a dear husband snoring away while she deals with being in labor to build that sacred marital bond of trust and support.

It appears likely that Pat will be born today. Perhaps before noon. I can hardly wait to celebrate his birthday!

Goodnight - tomorrow will be eventuful!

2009-03-05T20:58:00.000-08:00

We saw the doctors and the anaesthesiologists. Pui's cervix is fully effaced but not widely dilated yet, so she's on Cervadil (sp?) for the next 12 hours. Then they will see where she is and will probably induce labor. So there's a very real chance we'll meet Pat face to face for the first time tomorrow.

The nurses were just in here - they are going to give Pui a new, more comfy bed so she gets as much rest as possible tonight. How nice!

Now our job is to rest and get ready. It will be a tough job, but I think we may be able to meddle through.

We're at the Hospital!

2009-03-05T17:04:00.000-08:00

We are checked into our room at the UW Medical Center. We are in room #1 - looking out the window we can see Husky Stadium. Pui is all wired to the machine (Not wired, actually - the sensors are wireless) and appears to be having mild contractions - so mild we needed a machine to tell us she was having them. They are coming every 7 minutes or so. The nurses have been very friendly, and walked us through everything and reviewed our birth plan front to back.

We haven't seen the doctor yet, and will know more after she sees Pui.

Pat's on his way!

An end to the wait? We're waiting to hear....

2009-03-05T13:38:00.000-08:00

We talked to the floor nurse just after noon, and she told us that she expected to get us in this afternoon. She told us she'd call us when she knew a room was ready for us, so we wouldn't have to sit in the waiting room while they prepare.

Talking to someone who can tell us what's going on and demonstrate that they understand that this is an HLHS baby and they are making sure we have everything we need is very comforting and calming. Also, the comments from our friends who have been through similar situations helps quite a bit as well: Pat is really very safe right where he is now, and there's no hurry.

I'll update as I learn more.

Still waiting to go in. 39 weeks 2 days in utero

2009-03-05T08:07:00.001-08:00

We called in again at 5:50 AM. The nurse I talked to said that there was one room open for emergencies, but every other room was full and we should call back at noon. That's five delays in 18 hours. Little Pat is probably quite safe right where he is, but it's been over a week now since we last saw the doctor, and we are becoming concerned: what are the parameters for the best outcome for Pat? When will delays start to become a serious problem? Can we look forward to days of "Call back in 6 hours"? Is this a teapot tempest or something to get worked up about?

I guess we're a little freaked out that what we thought was going to be the one part of this whole process that had a little control over, we in fact have no control over at all. All we can do now is wait - and keep calling. We'll call again before noon, and keep at it until we are admitted. What else is there to do?

Change of plans... 39 weeks 1 day

2009-03-04T21:29:00.000-08:00

We were packed and all ready to go. But as the day progressed, our check-in time got later and later. 6:30 - 7:00, then 9:00, then we were told we could either wait until the middle of the night or call and get another check-in time at 6:00 tomorrow morning. We decided that a night in our own bed would be more comfortable than sitting in a waiting room all night. Apparently, this is a good time to have a kid: they just don't have enough rooms available for all the people they have coming in, so induced labors are taking a second seat. Those women are all going into labor now just to bug us. I know it. ;-)

Tonight Pui cooked up a storm - a ton of delicious food, much of which we plan to have Mom and Dad bring us while we are in the hospital. When Pui gets nervous or excited, she cooks. Me, I repack. I repacked everything. I got everything into three small bags, separated by where the bags will go: one with me, and two with Pui - one full of stuff for her and her nursing needs, and another for her and for the baby's first day: hats, booties, and a blanket Pui's been sleeping on.

Tomorrow we call the hospital again at 6 AM, and we'll see how it goes. And we'll see if any of us get much sleep tonight.

New Friends: a normal little boy who happens to have HLHS

2009-03-03T23:14:00.000-08:00

At the CHD Support group on Sunday we met a little boy named Alyc and his mother Amiel from Alaska. He has HLHS, just like Pat. You can get a pretty good idea of Alyc's personality - at least what we saw of it - from his picture. He was an energetic, impish, and totally charming normal 2 1/2 year-old boy.

We were delighted to meet them, and are so encouraged by Alyc it's hard to describe. They were down from Alaska to check out something that they thought might have been an alarming development, but turned out to be nothing but good news. We are just beginning to understand the worry that brought them all the way here from Alaska, and the relief everyone felt when everything was OK.

If there is anyone who has a boy about Alycs age with HLHS and would like to get in touch with him and his parents - especially if you live in Alaska - just contact me and I can get you in touch.

Getting ready: 39 weeks in utero

2009-03-03T22:35:00.000-08:00

Tomorrow afternoon we are checking into the UW Medical Center. They will give Pui a drug to help prepare the cervix, and Thursday morning they will induce labor, if it hasn't started already. I expect they'll need to induce - Pui has shown no signs of labor yet. We take it as a good sign that Pat will be a good boy - we asked him not to come out until he was full term, and he hasn't. Once he's out and has met the world, we'll ask him to recover from surgery quickly and well.

Yesterday, our neighbor saw Pui and my parents getting into the car while I put a couple small bags into the back of the car, and jumped to the obvious conclusion. Actually, Mom and Dad treated us to a dinner at the Crab Pot. On our way out, I had grabbed our fully packed bags and put them in the car, so we would have them there ready to go. We didn't think what it might have looked like to an outside observer.

Today we did our last shopping - we went to a store that sells Thai magazines and an Asian market, the library, and a supermarket. Pui cooked up a delicious dinner - she may be 39 weeks pregnant, but she still likes to cook. I have no complaints about that whatsoever: Pui's cooking is delicious. We are now wrapping up everything we need to have ready - we will be back in Kirkland only occasionally this next month.

I will try to update the blog at least once a day for the next couple of weeks - there will be a lot happening, but I'm not sure when I'll have time and access to the Internet to blog.

Support Group Visit. 38 weeks 5 days in utero

2009-03-01T20:24:00.000-08:00

Only 4 more days! I think Pui is more than ready - being very pregnant looks very uncomfortable. Pui hasn't slept an entire night through in weeks, and her belly itches, she's sore, her back aches, and she has trouble climbing stairs. I try to comfort her as I can, and not let my relief show that it's her and not me.

Today we went to Seattle Children's Hospital and met with the Congenital Heart Disease support group they have there once a month. It was very nice for us - we had about a dozen veterans of children with all sorts of serious heart conditions telling us what we can expect, giving us useful information, practical advice, and sympathizing completely with our situation. Everyone we met there was great. We are very glad we went. I have a couple of pages of notes. If there is anyone out there in a similar situation to us, I highly recommend joining groups like this.

It's beginning to sink in that soon everything we've been hearing about and preparing for is about to begin. It's like being backstage and waiting for the curtain to rise - that last wait is the hardest part. Once the show begins you are busy working on it, and whether you shine or bomb, at least it's underway. So now we are waiting in the wings, rechecking our costumes and rehearsing our lines, just waiting for the curtain to rise.

This time next week..... 38 weeks 3 days in utero

2009-02-27T22:39:00.000-08:00

This time next week we'll be parents. Quite a thought. It's not often a person can make a flat statement like that, but with an induction scheduled for next Thursday, it's pretty safe to say that Pat will be here this time next week.

I've posted a series of photos I like of Pui as her pregnancy has advanced. You can see them if you click on this link. The first one is already posted in this blog, but I think only one other one is as well - most are new.

Yesterday we got to have a peek at normal childhood stuff when we went and saw my niece's science-fair project. I was really impressed with all of the kid's projects, though of course none of them were as nice as my niece's. She postulated that ice would melt at different rates when sitting out in the open depending on the surface it was sitting on. She made some predictions based on the hypothesis (namely, that ice on Styrofoam would melt slowest) and tested it out. Turns out, ice melts faster on Styrofoam than a piece of cloth - I would not have anticipated that. Nor would I have thought that it would take more than 2 hours for an ice cube out in the open to melt. Suddenly, those massive ice sculptures you see at parties and weddings seem a lot less transitory.

I can hardly wait until little Pat has a science fair. Though I also anticipate that he's going to have a hard time keeping his meddling father from taking over the project entirely. :-)

Today we also hung blackout drapes in our room. I was a little nervous - the last time I hung drapes (in my condo in Kirkland around 3 years ago) I totally botched the job. I had curtains hung, but I also had rows of holes - of various sizes and shapes - in the wall around them. That was bad enough - now I was going to do the same thing, only this time in a house I don't own. I drilled the holes and installed one set into a stud perfectly. But the next hole I drilled missed the stud. I had double-checked it with two different stud finders, but I still missed the stud with the drill. I decided to try another drill hole a little to the left, but as I tried to get back on the stool I was using to stand on, I lost my balance and stumbled back, hitting the wall with the drill and breaking the drill bit. I was not a happy camper - it was shaping up to be another fiasco like 3 years ago, and I still haven't heard the end of that one. We searched for the missing broken drill bit for some time, but never found it. It did give me time to calm down, and with a fresh drill bit I completed the rest of the two installations without any further problems. Whew! Putting together furniture doesn't daunt me, but ask me to hang a drape? Sheesh!

Pui and I also bought a copy of the game Guillotine, and played it this afternoon. (Don't tell anyone, but when she cleaned my clock playing the game, it was because I let her win. Really. I'm serious. I wasn't really trying. And besides, the sun was reflecting glare off the cards. It was!) We plan to bring the game with us to the hospital, to kill time when we have to wait around. Being crushed playing that game should be more entertaining than playing "I spy with my little eye..."

Time is getting short: 38 weeks in utero

2009-02-24T16:16:00.001-08:00

Time is indeed getting short! In just over a week we will check into the UW, and after an overnight they will induce labor. We are to call and arrange a time to go in on Wednesday, March 4 (assuming Pat doesn't decide to arrive early) and that evening we will check in. They will get us set up in the delivery room, and give Pui a medicine to soften the cervix. There's a chance that will kick off labor, but if it doesn't they will give her a medicine called pitocin to induce labor. So the very latest Pat should arrive will be March 5.

Because they know that there are problems with his heart, but don't know the actual condition, we will not get much of a chance to hold him before he goes off for an in-depth examination. We were hoping for a chance to at least get a picture of him and Mommy "pre-IV", but it looks like we won't get the opportunity. Hopefully, he'll have only what we have diagnosed so far, and so will get a chance to hold and nurse him before his surgery early the next week.

Today we put together the stroller/carrier/car seat, and installed the fixed base in the car. It was actually easy. It's nice - we're both quite pleased with it. All of these things are supposed to be a challenge to put together. I guess everyone uses the "Writing Instructions for Dummies" book, so dummies like me can actually understand them. Ah, progress!

Visit with the Surgeon: 37 weeks 3 days in utero

2009-02-20T16:26:00.001-08:00

Today we got up early and went to The Fetal Echo Center near Children's Hospital, to meet with the surgeon who will be doing Pat's procedure. Dr. Cohen very kindly took almost an hour to talk with us, even though most of what we talked about was provisional, based on what we know from the ultrasounds to date. After he's born, a much more detailed and extensive ultrasound can be done, and only then will the doctors be able to tell us with confidence what they plan to do.

Every time we talk to a person in the know, or read a more reliable source, the outlook brightens. Talking with Dr. Cohen continued the trend - after talking with him we both feel even more confident than we did before. And it's hard trying to find a more important source of information than the surgeon that will be doing the operation. We was factual and to the point. He wasn't super-friendly, but he didn't talk down to us or pull any punches. He was very clear about about what he did and didn't know, and what we could expect. And he was very confident. We liked the confidence a lot.

Assuming the diagnosis we have is correct and isn't changed with a closer scan after he's born, our baby will have about a 9 in 10 chance of coming home with us after a month or so. His surgery will happen 5 to 7 days after he's born, and we won't be able to pick him up or hold him for several days afterward. This initial procedure will be the most difficult of the three, and will take roughly four to five hours to perform. They need to induce hypothermia, and cool him off to 18 C. Then they begin the first steps that will eventually - after three procedures over several years - leave him with a functional two-chamber heart. When they are finished with this initial re-plumbing his little heart, they'll slowly re-warm him. Then it's up to him to hold on and recover.

It's not easy knowing that so much will happen to our little boy so soon after he's born. This is a serious exercise in trust. But the more we learn about the doctor, the team, the facilities, and all the knowledge and expertise being poured into this, the easier that trust becomes. Knowing in more detail what is going to happen is scary, but knowing also that everything is well understood and that the surgeon has such clear familiarity and comfort with the protocols is an even greater comfort.

We learned a lot in the meeting, and have a lot to wrap our heads around. But we do know that the take-away lesson for us is that we are all in good hands. Come what may, we can rest assured that early last December Pui and I made the right decision.

News Clipping

2009-02-20T16:02:00.000-08:00

LOCAL WOMAN SOUGHT FOR QUESTIONING ABOUT MYSTERIOUS BASKETBALL DISAPPEARANCES

Local police are asking people to keep an eye out for a mystery woman thought to live in the area, in connection with a rash of basketball thefts in the area. The detective in charge of the case, Officer Rookie Newbie, has started distributing copies of this photo after a co-worker suggested that the woman in the photo might be a person of interest. According to Officer Newbie: "Well, to be honest, I think we can explain how these basketballs were transported out of the area. What remains is to find the people involved and discover their motive."

This is Officer Newbie's second case, his first being an unsolved kidnapping of someone named Prince Albert. "We know he's in a can", Officer Newbie said, "We just have yet to discover where. We WILL catch the perpetrators though, you can be sure of that!" Although several other officers attended the press conference, no other officer was able comment on either case, being busy either rolling on the floor or gasping for breath from what sounded suspiciously like laughing.

New Furniture! 36 weeks 6 days in utero

2009-02-16T21:34:00.000-08:00

Yesterday and today were busy days. First things first: I got a call from my sister where she told me about some really good photography techniques for taking pictures of people. She very politely did not say "Rob, your pictures are awful!" That's the way I best take criticism - by being shown a better way, and past ... mistakes ... (See Pui's picture in the Feb. 14th entry) can be left in the past.

So I did what older brothers are never supposed to do, and followed my little sister's advice. I did the B&W thing on my own, but I think it worked. The result is a much nicer picture, and much closer to the actual person I see every day - and still can't get enough of.

Our main activity over the last two days has been putting furniture together. We got a crib from the couple across the street - Peter and Elizabeth, whose two very cute kids have outgrown it. Plus a changing table (which we bought almost as much for the shelf space as a place to change diapers), and a rocking chair billed as great for nursing mothers.

Construction was done by Yours Truly ... with a little help from my mother. OK, a lot of help from my mother. And my Dad. And Peter from across the street. And Pui. But except for that help I did it all by myself.

As You can see from the first two pictures, they all had some piecing together to do. But as the last two photos show, we got everything together, and built correctly. No need to sell Pui on the benefits of a crib with uneven legs (It's like a rocker AND a crib!) or that having a changing table that wobbles unsteadily is a good upper-body workout for the person trying to both change the baby and keep the table from falling over, or that the rocking chair wasn't meant to actually, you know, rock. It's all stable, firm, and the only parts that move are the ones that are supposed to. Better yet, there was no blood shed or pieces broken.

Tomorrow we have a visit from my cousin (that we are looking forward to) and a visit to the doctor (that we are not looking forward to so much.) We need to see the doctor as part of the immigration process, to verify that Pui has no chronic horrible diseases. Having seen as many doctors as we have recently, this should be mostly just boring - and expensive. Nothing to be done about it though, so we'll go and get the required boxes ticked off our application and then go back to focusing on the baby.

We are now both reading about how to raise bilingual children. Here in the Seattle area, that usually means English and Computer, but we are going to try to raise Pat bilingual in English and Thai. There's always time to learn Computer later. ;-)

Happy Valentine's Day! 36 weeks 4 days in utero

2009-02-14T20:50:00.000-08:00

Happy Valentine's Day!

I hope everyone reading had as good a day as we did. I gave Pui a card I spent some time picking out, and she cried. I'm hoping she cried because it was so sweet and wonderful she couldn't help herself, and not because she realized she was saddled with an idiot for a husband. She tells me it's the sweet and wonderful one. I'll take it. Pui got me two cards, and I almost cried because they were so sweet and wonderful. But to maintain my macho pose I told Pui I was trying not to cry because I stubbed my toe on the blanket. (I don't think she bought it. To be honest, a blanket was probably a poor choice for toe-stubbery.)

My father, though, won the sweeps for best Valentine's gifts. The first picture is what he gave Pui. A flower (an orchid!), candy, and a little teddy bear. I would have been jealous and upset, but he got me some chocolate, so I didn't complain.

Poor Pui is really feeling the effects of being very pregnant. I took this picture just an hour or so ago. She has sciatica something fierce, and is generally achy and uncomfortable. At least she can sleep laying down: a number of her friends and relatives told her that they could only sleep sitting up in a chair the last few weeks. I just can't see Pui getting enough sleep that way - it's bad enough as it is with her needing to go to the bathroom every couple of hours because Our Little Angel is pushing on her bladder.

A couple of days ago we got rid of the sofa that had been in our room, so now we can start putting the room together in the way we expect it to be when Pat comes home. I get to put together a crib, a changing table, and probably a rocking chair. I like putting together puzzles, and really enjoy the 3D puzzles. These will be just like a puzzle, with the result being a usable piece of furniture.

We'll see how happily optimistic about putting them together I will be after the first one is finished. I predict one of two outcomes: it goes smoothly and I am eager to get started on the rest, or I will be nursing wounds and a grudge against the manufacturers while trying to convince Pui that, yes, the changing table is supposed to have uneven legs and trapezoidal cribs is the latest fad.

Pui was very impressed when we - my mother, father, and I - were able to get the sofa out of our room and down to the living room. Not only did we get the monster - which was longer than the hallway is tall - out a doorway that was narrower than the ends, but we got it around two very tight corners AND down a flight of stairs with no injuries, accidents, or broken objects or people. The sucker was heavy too. We moved it to the living room so the Salvation Army movers wouldn't take one look at the task ahead, shake their heads, and drive away without the sofa. Instead, two burly guys came in, picked it up, lifted it over the piano, and neatly tucked it into their truck. Bye bye sofa! Hello lots of space for baby!

Thank you! 36 weeks in utero

2009-02-10T13:42:00.000-08:00

There are a lot of people that have been a huge help to us - huge - that we haven't mentioned in the blog, and I'd like to thank them here.

My sister Katy and a group of her friends have been enormously helpful. Whenever we have a question, we ask my sister and before the day is out we have answers, suggestions, and experiences from several people. Much of what we have bought, the pediatrician we want to use, and all sorts of practical advice have come from this great group.

The medical people we've dealt with - everyone associated with Children's Hospital has been great, and the staff at the UW has been great also. The financial person we worked with at Children's - Gary Ostendorf - helped us figure out how to be able to get all the fabulous help we've been getting. The DSHS people we have dealt with have also been terrific. and our High-Risk Pediatric Nurse with the county - Sue Borgstrom - is amazingly helpful as well.

Then there are the support groups. Hope For HLHS and Seattle CHD are a couple of support groups that have been good sources of information already, and are clearly going to play a large role in our lives in the next several years. Seattle CHD is a local group, with knowledge and experience about things here in Seattle, and Hope For HLHS is a much larger international group with a huge pool of experience and knowledge about all things HLHS.

To all these people and all the others I haven't named ... THANK YOU!

Induction day - March 4: 36 weeks in utero

2009-02-10T13:24:00.000-08:00

Today there's not much going on - yesterday we saw the doctor again, and she said that she was going to schedule inducing labor on March 4th. Pui's body seems to be getting ready to deliver - Pat is head down and beginning to drop - so we are just hoping that he'll be patient enough to last until then.

when we got home, we had a letter from Immigration: they want Pui to go down for her Biometric scan on Feb. 27. We decided that it would be a bad idea for us to say we'd be there when there is a real chance that she may be in the hospital delivering Pat, or worse, have her water break there. So we've applied to have the meeting rescheduled. Either before Feb 19 or after March 20, when we hope the baby with either be home or at least out of danger.

Now we plan to spend the rest of the day chilling out, with me drinking many liters of water to help this gout attack become history!

Friends and Family: 35 weeks and 5 days in utero

2009-02-08T22:17:00.000-08:00

We've been continuing to prepare for Pat's arrival - we want to get rid of the couch in our room and replace it with a rocker, a changing table, and a crib. We have a changing table, and as of today we have a crib lined up. Now we only need to get the rocker and take care of the minor issue of getting the couch out. When they moved in, Mom and Dad had some professional movers bring the couch up: after finally getting it in the room, they said that couch is never leaving that room. So, naturally, we want it out.

Today we also had a visit from my cousin and her family. We really enjoyed seeing Cori and David again, but the star of the visit was their 13-month-old daughter, Talia. They are in the first picture.

Talia is a lot of fun - she is walking very well, just beginning to speak (Her "hi" is very cute), very curious about everything around her, and very sweet-tempered. A real cutie. The second picture is Talia laughing at a wind-up dancing toy.

My gout is still a problem, so I'm limping about and trying not to complain about it. Too much. OK, I'm trying to keep from waking the neighbors with my complaints. Very often.

The last picture here is of Pounce, my Dad's cat. He has the softest fur I've ever felt on a cat - like rabbit fur. He's quite large, and by large I mean fat. I think he's proud of his fine feline girth: when he's feeling good he shows off his vast expanse of a belly so the world can see. I wish I could relax that much.

Rob is limping: 35 weeks, 2 days in utero

2009-02-05T17:13:00.000-08:00

Alas, my gout is acting up again, and so I haven't been doing a lot of walking around. I have been able to work with some pictures, though. If you want to see some photos from the the shower, you can follow this link to Baby Shower pictures. I think I have everyone that came in at least one photo, but maybe not.

Pui and I did some more preparation for the baby as well. After sorting through all of the great stuff we got in the shower, we updated our list of things to get and went shopping. One major gift, from my mother and sister, was the travel set - a combined carrier, car seat, and stroller. It came in a huge box, and between that and the other things we bought Mom and I had to unpack and repack the car 3 times, while Pui patiently sat in the car. No doubt rolling her eyes and laughing. But we did get it all in, and didn't have to leave someone standing in the parking lot.

The next day I went to the doctor for my foot - I hardly got any sleep that night because it hurt so much. Since I have no insurance, I had to pay out of pocket: ouch. That hurt almost as much as the gout. Dr. Chaput was awesome, as usual, and helped me find the most cost-effective approach to dealing with this.

Today - pictures. I did the baby shower pictures, changed the wall-paper on my computer (a sunset from our Bangkok condo - the same place I took the picture at the top of this page), and did quite a few puzzles. Actually, it was nice to be able to slow down for a day and shirk all responsibilities. :-)

Next Appointment: 34 weeks 6 days in utero

2009-02-02T20:31:00.001-08:00

Today we went back to the UW for another NST and check-up with our doctor. It was fairly uneventful, though the nurse again used the joy buzzer on the baby in the NST. All it did was give him hiccups which made the measurements the wanted unreadable. That's my boy - already making it known what he does and doesn't like.

According to the doctor, he's doing very well. Boring and routine, that's how she likes our visits, and we agree completely. No more surprises would suit us just fine.

It was a beautiful clear day, but cold. The mountains were all visible going to and returning from the UW, standing out in all their snow-capped majesty. Cold-looking snow-capped majesty. You could almost feel the arctic air swirling past those glacier-bound peaks. We were quite glad to get home and get warm.

Tomorrow we are planning on going shopping, to fill in the areas the shower didn't fill. I hope to have some pictures of the shower in a day or two.

Baby Shower!: 34 weeks 4 days in utero

2009-01-31T20:12:00.000-08:00

Today my mother and sister threw Pui and I a great baby shower. We invited only our closest friends and family, but things were still pretty crowded. We had a great time, and people were incredibly generous. I didn't get the time to talk to anyone as long as they deserved - there were so any people there we know and like. There was a number of small (and not so small) children there. Once they discovered the "Monkey Room" (The playroom) we didn't see too much of them - but what we did see was very cute. Such well-behaved kids! I fully intend to spoil our boy rotten, so I should soak up the presence of well-behaved kids while I can.

Pui and I did almost no work at all setting everything up: it was all my mother and Sister, and all the credit for the success of the party goes to them. Well, them and the high quality of the people attending. ;-)

Before the shower, Pui and I went to the local Pancake House, where after a 25-minute wait (with pretty good people-watching) we sat down to a late breakfast ... more of a lunch, really. It was quite a feed. I ordered a half order of Blueberry Pancakes and got more than I thought I could finish. Pui ordered a full breakfast and got a lot of food. A lot of food. In the end we did a pretty good job of demolishing the food - we even came fairly close to finishing everything. We waddled out very full indeed.

Yesterday we went to Children's Hospital Fetal Echo Center again. We had another round of Ultrasounds (no more 3D renderings, alas!) and learned that the baby is doing very well in every way but that pesky Hypoplastic Left Heart thingy. The doctors said that it's a good thing that we have no other apparent problems, and that our baby has a "standard" case of HLHS. She was actually very encouraging. Everyone there was just as friendly as last time - a group of very nice people.

After the appointment, the nurse - an extremely nice and very knowledgeable woman named Lonnie (I'm guessing at the spelling) - gave us a guided tour through Children's Hospital. She showed us where the Operating Theater was, showed us the recovery areas (Neonatal ICU, Cardiac ICU, and regular ICU) the parent support facilities, and the cafeteria. The place is gorgeous. It has lots of fun and kid-friendly art throughout the hospital (Like the painting in the picture) and has an amazing ICU. There are tons of people everywhere, everything is spotlessly clean, and there are monitors everywhere. It all looks very modern, data-intense, and competent.

Still, it was hard to see a tiny newborn in the NICU plugged into six or seven IVs, with several monitors and cables. All sorts of lines, tubes, and cables radiating from a single tiny baby. Knowing that in just over a month that will be what our baby will look like is ... wrenching. However, we know what it will look like and what to expect. We'll be ready.

More Adventures: 34 weeks 2 days in utero

2009-01-29T20:55:00.000-08:00

It's been a mostly quiet couple of days. We had a hard freeze the other day, and the next day I went out back and noticed that a bucket that had been full of water was now iced over. I thought that I could pull a disc of ice off the top of the bucket, but no ... the sides of the bucket were cold too. Instead I pulled out what looked like a perfect large vase of ice. You can see it in the pictures. Inside it there were all of these fascinating structures of crystals. Not many survived pouring out the water, but some did - that's the second picture.

Pui and I and my father went out to lunch at a place called the Crab Pot. Pui saw an ad for their steamed seafood, and wanted some. We went to the library first (The Bellevue Public Library is very nice) and then to the Crab Pot on Lake Bellevue.

If you've never seen Lake Bellevue, think of a very large puddle (about 100 meters across) and imagine a bunch of buildings built on the water, on pilings, all around it. Now put a couple of fountains in the center, and you have Lake Bellevue. Anyway, we went to the restaurant, and Pui wanted to get a dish called "The Cove" - steamed mussels, shrimp, clams, corn, potatoes, and sausage served in a pile on butcher paper in the center of the table - but it has a minimum of 2 people ordering it. I finally agreed to be person number 2, and the waiter brought us our bibs (!) and tools of destruction. There was a crab cracker, a pulling fork, and a small mallet.

When I saw the mallet, I decided I liked this dish - any meal that gives you a small hammer to eat it with is a good meal in my book! The food arrived in a great big pile - as advertised - and Pui and I dug in. Darn if we didn't eat everything but one piece of corn and a couple of the half-potatoes! I was full for hours. Great fun.

Tomorrow we are going back to Children's Hospital, for a check-up with the Pediatric Cardiologist and to tour the facilities at Children's. Me, I'm hoping for some more 3D images of our little boy. :)

More snow?! 34 weeks in utero

2009-01-27T22:37:00.000-08:00

Yesterday we saw the doctor again, and had another NST. This time, the NST did not include buzzing the baby. The technician we had has a relative who is getting married in Thailand soon, so we had plenty to talk about. Afterward, we were ushered into a room to see the doctor fairly quickly. There, we had three separate people drop by to talk to us about services, our situation, and nutrition advice. Then we saw the doctor, who had a portable Ultrasound device with her. No new 3D images, but we did get to see Pat again. The doctor told us everything is going very well: we really liked hearing that!

This morning it was snowing again. I remember snow as a rare thing in Seattle. For something that is supposed to be rare, we see a lot of it! Fortunately, it started to rain in the morning and now all the snow is gone. Whew!

This morning my Mom asked me how I like my coffee, and made me some. I should have known there was a surprise coming - she's never made me coffee before. She did it very well and made a lot. A whole lot. We took a few pictures.

Me, every morning:

I kind of like these pictures, but I think someone doctored the center image: I have no bald spot! Really! Seriously! I don't! I don't! I don't!

Well, OK, maybe I do.

:-(

On Friday we are going back to Children's, and will have a tour of the facility. We're looking forward to that!

Snowing again! 33 Weeks and 5 days in utero

2009-01-25T12:45:00.000-08:00

It's snowing again here in Seattle, and has been for hours. It's not sticking or anything, but it is white stuff falling form the sky. Again. Actually, I like it - though I seem to be alone in that feeling.

It's been several days since my last post, and a few things have happened. Our visit to the doctor was mostly uneventful. We had our first NST - Non-Stress Test - at the UW on Monday. They strapped two monitors to Pui's belly and monitored Pat's heartbeat for about 20 minutes. Then, because the nurse wasn't sure he was showing enough "Accelerations" (temporary increases in his heart rate) she pulled out something that looked a little like an electric razor with an oval pad in place of the cutting head, pressed it against Pui's belly, and turned it on. BZZZZZZZT! It gave off a loud buzz and vibrated against Pui's belly. "Non-stress test" my left foot! His little heart-rate jumped significantly and for some time, as did Pui's. And mine. But apparently it was enough, as the nurse didn't use her hand-buzzer on Pui again and let us go see the doctor.

We waited and waited for the doctor, but she was far behind schedule: we didn't mind - it's nice to know the doctor will give people extra attention when they need it, but it was long. Pui started to get hungry, so we asked the front desk for a pager so we could go grab something quickly in the cafeteria. Here's a hint: if you want a late doctor to appear, buy some food and sit down to eat it. Two bites in we got paged. We carried our food up, and Dad waited in the waiting room with our lunch while we saw the doctor.

We learned that Pui had actually lost a pound of weight since our last visit, but Dr. Cheng wasn't worried. In fact, she said that everything appeared to be going very well. She said that Pui needs to eat many small meals, because the baby is pushing on her stomach and making it so she could eat less at any one sitting. Forced to eat 5 or 6 meals a day ... I would like to have that. But then I like to eat.

In the following days Pui gained a couple of pounds, and I got an attack of gout. For the last few days I've been hobbling about - it waxes and wanes, and has yet to go away entirely. :-( On a happier note, we went to a delicious restaurant with some friends of Pui (If you are in the Seattle area, I can highly recommend three restaurants: The Silver Spoon Thai Restaurant, near Trinity Golf Course, Nopakao Thai Restaurant in Juanita, and Tom Yum Koong Thai Restaurant in West Seattle. All three are very delicious. The owners of the Tom Yum Koong are opening a restaurant in Bellevue next week, and we are planning to eat there - the Tangerine Thai Restaurant. I salivate just thinking about it. :-)

When we went to the restaurant, we also went to a Thai market, where Pui bought some Coconuts. When we got home, we realized that we didn't have anything like a machete or big knife to open them up. We talked about what we could use with Dad, and he hit upon a solution: you can see it in the picture to the right. Opening Coconuts with hand-saws probably isn't the best way to get at it, but it sure worked! We opened a hole big enough for a straw, and Pui had some nice, cool coconut water to drink.

That about catches us up: we have another doctor's appointment tomorrow, where we hope the scheduled "Non-stress Test" doesn't include any alarming baby-buzzers.

Inauguration Day: 33 weeks in utero

2009-01-19T22:19:00.000-08:00

This morning we got up early and watched the swearing-in ceremonies for the new President of the US. I was astonished at the number of people crammed into the Washington Mall. Quite a spectacle.

Now we can see our little baby moving in Pui's tummy. We can't really tell what part of him is making Pui's tummy bulge, but it's unmistakable. His favorite time for exercises is bedtime. Within minutes of the time Pui lays down for the night he starts jazzercising. I think it's cute and funny.

The weather here has been fantastic for the last few days, though so far today we have a lot of fog. Yesterday and today Pui and I went to the Kirkland waterfront and just soaked up some sun. You can see from the picture to the left. This picture was taken just after noon - you can see how low the sun is in the sky, even in the middle of the day.

Last post I mentioned that Mom and I were going to take two little girls sledding. In the end, there were three little girls, a teen-age boy, and 4 adults that all went as a group. The girls did not run us ragged, but it was certainly a workout. The picture below to the left is the guy that set up the excursion and both of the little girls we hosted. The picture to the right is Mom and the smaller sister. She was very cute in her bright purple snowsuit.

Finally, there's a picture of me in my snow outfit. We sledded for about two hours, then had a break for hot chocolate and home-made chocolate chip cookies. I had probably more than my fair share of cookies, but at least I didn't wrest any away from the kids so I figure it's OK. :-)

We sledded for about another hour, and then the girls unilaterally decided they were done. It was a bit of a relief - we didn't have the girls wanting to go back and sled some more in the car all the way back home. Instead they slept. I kind of wanted to sleep as well - sledding down the hill is easy, walking back up the hill, sometimes pulling a sled full of little girl, can take it out of you.

With the weather so nice, we are seeing some sunsets. Sunsets here can be beautiful - the picture below shows the sun set painting the Olympic Mountains purple.

Tomorrow we go back to see the doctor again - we'll have an NST (Non-stress test) and see Dr. Cheng. I don't know if there will be more ultrasound or not - we'll see.

Calm before the storm: 32 weeks, 2 days in utero

2009-01-15T22:07:00.000-08:00

Pui's belly is getting bigger by the hour. She's having some trouble sleeping, and climbing stairs is getting tiring. I love this picture: you can see pretty well how much Pat is making Pui bulge, but it really is more impressive in 3-D. I like being able to see and feel Pat move - he's an active little guy in there!

The last few days have been busy, but not without some fun. On Tuesday Pui and I had an early dinner with Helen and Valerie and played some Mah Jong. We had a great time, and it was great to spend some time with Helen and Valerie again: Helen used to be my neighbor, and Valerie lives right behind Helen. Before I moved to Thailand I used to play Mah Jong with them every week. Wednesday we were busy with various preparations and maintenance tasks: I helped move furniture around and learned how to clean electro-static filters: woohoo! Today we had lunch with my cousin and her family: she has two little boys that are very cute and friendly. My cousin and her husband clearly do a good job parenting - Pui and I were all but writing notes the entire time. Then this evening I went back to Helen's for more Mah Jong while Pui called back to Thailand on Skype. I had a lot of fun, and I think Pui did also.

Tomorrow my Mom is going to host a couple of little girls for a sleep-over. For her church auction, she auctioned off two overnight baby-sitting jobs. I have never met the little girls that are coming, but apparently they are both very very cute and very very energetic. There is going to be a little girl storm here starting tomorrow, and we are busy battening down the hatches (thus some of the re-arrangement of furniture). They arrive Friday afternoon, and on Saturday we (the host, the girls, Mom, and I) are going to go sledding in the mountains - another auction prize, this time one Mom bought. We are hoping that we'll survive the car trip up to the mountains in good enough shape to let the girls burn all their energy sledding. We'll have more adults than kids so hopefully we can tag-team - but I expect that in ten minutes we will be gasping for breath on the slopes while the girls run tireless circles around us. We'll see...

Cold days: 31 weeks, 6 days in utero

2009-01-12T22:36:00.000-08:00

For the last week Poor Pui has been suffering from a cold. She's having trouble sleeping at night (and thus I am too) and wakes every morning with a sore throat. We called the Nurse Practitioner, who basically said that most Over The Counter medications in small amounts is OK, but that there wasn't anything else really we can do. I wish there was something we could do to help her out, besides try to give her moral support. :-( Instead I try to help as I can. I have had Dad show me how to fry eggs and make scrambled eggs, and I have more or less figured out the toaster (those charred pieces of bread in the garbage had nothing to do with me, I deny all knowledge and/or association with those pieces of carbonized bread, and I resent the implication that I had a hand in their creation.) I have become a pro at making a warm fresh-squeezed lime-juice-and-honey drink, and even learned how to soft-poach eggs (though we decided the egg was too undercooked for a pregnant woman). All of this may not have helped Pui's cold, but it has certainly earned me some brownie points.

Today Pui had a craving for some lamb, so she, my father, and I went to Crossroads Mall and got some lamb dishes at their food court. The food was fairly expensive, and we got just a little bit of lamb. It was very tasty lamb, but still ... it was 3 or 4 times more expensive than that similar dish would have been in Thailand. The price of food here is one of the starkest differences. Aside from the temperature, that is. But another place nearby had some tasty ginger tea and yummy fried squid balls, so it wasn't too disappointing. (Four years ago, I would never in a million years have thought I would, in all seriousness, write anything like that last sentence. Funny how Life can change your existence!)

Pui's mother recently had a pace-maker put in, and being away from her mother when she was having a surgical procedure done didn't do anything to help alleviate her misery. But the procedure was a success and Khun Mae is doing well: to every one's relief. She's a delight, and we all hope for the best for her.

Smile for the camera! 31 weeks, 1 day in utero

2009-01-07T22:47:00.001-08:00

This morning we went to the University of Washington to their high-risk maternity care ward. Everyone there wasn't has relentlessly cheerful as they were at Children's, but they were quite nice and very good. We met with the Nurse Practitioner and OB-GYN we will be working with, and their obvious ability, competence, and assurance was very comforting to see. They didn't pull any punches or sugar-coat anything, but were straightforward and factual without being condescending. That group only deals with high-risk pregnancies, and many of those appear to be heart-related. We again didn't learn much new about the baby's condition, but we learned a lot about the hospital and what we could expect there. We spoke with a social worker as well, who was quite helpful and upbeat.

But the highlight of the visit was the ultrasound. The technician wasn't very chatty, but she was nice and captured and printed some really good pictures for us. The first picture is a profile of our baby: you can see him looking up, with his heat taking up the right 2/3 of the image.

What a handsome lad! What a nicely shaped head! When he was having his skull measured, they gave approximate date-equivalences for normal growth. While his body measurements were almost exactly equal to his actual age, his skull measurements were about 2 weeks ahead. He has a big head - just like daddy. :-)

The ultrasound machine had the ability to make multiple scans simultaneously, and then stack them up using software to create a 3-dimensional image, which then the technician was able to print out. These are the pictures we like the best. In the first one, you can see that he has his father's nose and his mother's lips. And nicely fat cheeks.

In the next one, you can see how he was comfortably pillowing his head on his hands. I think I like this one the most - he looks so comfortable and cute.

In the last photo little Pat is showing respect for his uncle Aid by saluting. You can really tell he's his father's son: he has his father's nose and his double chin.

The doctor told us that we want him to be healthy and full-term when he is born, a goal we plan to meet. He again checked out as completely normal in all ways except for that pesky left-heart thing. She also told us the calculations have him at approximately 4 lbs, 3 oz., and is in the 61st percentile for babies this age.

Before we left Pui got a flu shoot and gave some blood, and we made 5 more appointments over the next six weeks. We are going to become very familiar with the University of Washington hospital in the next two months!

Cold days: 30 weeks, 6 days in utero

2009-01-05T23:26:00.000-08:00

Last night the power went out in the middle of the night. Pui is trying to fight off a cold, and had been cold all day. Watching it snow (again!) all day when you are not feeling well wasn't a big help to her state of mind. She woke me up, and I got up and determined that, yes, the power was out. I figured that if it got cold in our room I could go wake up Dad and we could fire up the generator. So I did what any sleepy dad-to-be with a tired, anxious, sick, pregnant wife would do. I went back to sleep.

Fortunately, the power came back on before either the room got cold or Pui decided to gently prise me from slumber with a hefty jab from her elbow. And when we looked outside in the morning, the snow was pretty much all gone. Whew!

We spent most of the morning going over paperwork and scanning and printing documents. My sister had asked some of her friends about good pediatricians in the area, and passed along a lot of good recommendations. Now we have to start sorting through them. We already have some criteria: nearby, preferably with some previous experience with HLHS or major cardiac procedure infants, but mostly we want someone good.

The day after tomorrow we go to the UW Medical center to meet our OB-GYN and tour the birthing facilities. Should be interesting.

Visit to Doctors: 30 weeks, 3 days in utero

2009-01-02T21:23:00.000-08:00

Today we got up bright and early again and went and saw Doctors at the Children's Prenatal clinic. We were very impressed with how very competent, knowledgeable, nice, calm, supportive, and genuinely concerned everyone we met there was. Seriously. It's like they put antidepressants in the water, and have "Must be a very nice person" as an unbreakable job requirement. As parents of a baby at risk, we found it amazingly reassuring. The pediatric cardiologist who talked with us didn't pull any punches and admitted to not knowing a lot of things - but he answered every question calmly, patiently, fully, and spoke to us as educated adults. He clearly has a deep understanding of all the issues, and spent the time to make sure we understood everything he said. He reviewed all of the procedures that is going to be needed over the next several years. He said that despite one other worrisome feature (some apparent leakage in his working ventricular valve) he had a fairly standard HLHS, and the doctor was reasonably confident of a good outcome. As much as one can ever be.

The high-risk OB-GYN we met with was much the same, though he had less to say: other than the HLHS, our unborn son is very healthy. In all other ways he's doing great. The two people that run the ultrasound were very good as well: one woman only measured the heart, and she measured it in every conceivable way despite our little guy squirming around the entire time like a ten-year-old being given the "Birds and Bees" talk. The other woman examined the rest of the baby. One memorable moment was seeing definite proof that his urinary system worked correctly: right there on the ultrasound screen we could see him pee. It was unmistakable, and quite funny: the technician laughingly played it again for us. It was very re-assuring to have her and the OB-GYN tell us that in all other ways he is looking great. He's going to have a heck of a fight on his hands after he's born, and the healthier he is at birth the better his chances.

All in all, we did not learn much that was new about our baby's condition, but we learned a heck of a lot about the doctors and staff at UW and Children's - and all of it was positive. We are both going to sleep a lot easier tonight.

Welcome 2009! 30 weeks 2 days in utero

2009-01-01T21:52:00.000-08:00

Today was a nicely lazy new years day. We slept late, and in the afternoon we went to check out Dad's boat. It was quite cold there at the marina, despite it being too warm to snow. The wind wasn't very strong, but it sucked out all the warmth from our fingers very quickly. Nothing like hanging around cold water in cold weather!

While up there, we thought we'd see if the outlet mall was open. Boy was it. It was thronged with people, and most of the stores were doing a bunch of business. We got a pair of jeans for me before getting sucked into the baby store. There Mom exerted her powers as Grandma-to-be to buy a bunch of cute clothes and hats and things ... including a bib that says "Cute but messy. Just like Daddy." I would protest, but its unfortunately true. After a hard day shopping, Pui had trouble staying awake on the way home. You can see some of the little remaining snow in the background of the picture.

Tomorrow we get up early and - despite the predicted light dusting of snow - we are going to drive into Seattle and see the doctor for our first thorough check-up since we arrived in the states. We are both excited and nervous: we haven't seen any new images for a month, and aren't quite sure what to expect from the doctor. I'm sure it will all be fine: everyone we have spoken with so far has been very helpful.

First Visit to Children's Hospital: 30 weeks 1 day in utero

2008-12-31T22:15:00.000-08:00

Today we got up early and went to Children's Hospital to speak with their financial advisor. It was the first time we went to the hospital, and we were very impressed. It's a very nice place, and they've clearly gone to great lengths to make it as child friendly as possible. You can see a picture looking back at the entrance below.

Everyone we met was friendly and helpful, and the person we met with with full of great advice and explained our options very clearly. Not far outside his office was an indoor atrium with an amazing sculpture hanging in the middle. Here's a picture:

We left feeling much better about how things were going to turn out: Seattle Children's Hospital is going to be a good place for our son to fight for his life.

After we went to the hospital we returned home and decided to rest before preparing dinner. In order to prepare the dinner, we just had to go to the import market. We ate lunch there and bought lots of cooking materials. We returned home and began cooking. Pui cooked up a delicious 4-plate New Year's Eve dinner that we shared with my parents and our friends the Standings. It was very tasty, and happily there are lots of leftovers! Now we are full and happy and wondering if we'll be able to stay awake for midnight.

Happy New Year everyone!

Storms in Seattle: 30 weeks in utero

2008-12-30T21:14:00.000-08:00

We've been in Seattle for one week now. It's been pretty bad weather, one storm after another. But the last two have been rain and wind, so the snow is pretty much all gone now. It was pretty, but inconvenient and tricky to drive in. But bad weather does mean that we have a good excuse to stay in and ... cook!

Below is Pui preparing some prawn. There is a great store here that has a lot of Asian imports, and we have made 3 visits already, with another one planned for tomorrow. We are going to make New Years Eve dinner for everyone, and will have to get the materials we need, so gosh darn it we're going to have to go back to the market. My parents celebrate the New Year at Greenwich Mean Time, which is 4 PM in Seattle. I think.

Besides cooking, we are spending time tying up loose ends in Bangkok from a distance, filling in paperwork, opening accounts, and generally doing everything we need to do when setting up a household in a different country when you have had only a few week's notice that you are going. Our son will never need to doubt that his parents will do anything to help him survive. I plan to use this story mercilessly when he's a sullen teenager.

Merry Christmas! 29 weeks 2 days in utero

2008-12-25T14:40:00.000-08:00

Merry Christmas!

We have been sleeping for most of the last 2 days. When we haven't been gaping at the snow. The view out of our window just about an hour ago was the picture below: Christmas in Kirkland!

When we arrived, we were shown to the room my parents prepared for us right away. It's above the garage and is next to the upstairs bathroom, at the far end of the hallway off the stairs. It's very private, and well-insulated - my parents had added a space heater, and the room was actually hot. We felt right at home. :-)

I took the picture below from the door, looking into the room. You can see Pui sitting on the sofa, recovering from our ordeal of sitting for hours and hours.

Yesterday we were going to have a couple of relatives over for Christmas Eve dinner, but another storm blew in so it was only us four for an enormously delicious feast. After all of that eating and napping, we needed to catch up on some more sleep.

Christmas morning I woke up early and went downstairs while Pui slept. I fixed breakfast for her, and after a couple of hours she came back up and snuggled in for a nap - that's the picture below.

All day long so far, it has rained or snowed. This weather makes it hard for the local wildlife. There are a bunch of hummingbirds around that have to be awfully cold. The picture below is of a bird about 3 1/2 inches long (8 cm or so). You can sort of see the snow falling behind her.

Walking is treacherous in this stuff, much less driving. We are very glad to be somewhere safe and warm! Just one more in our long list of things to be thankful for on this day.

Have a merry Christmas everyone!

Made it to Seattle! 29 weeks in utero

2008-12-23T19:39:00.000-08:00

We arrived safely in Seattle! It's every bit as cold and snowy as we expected, but the room Mom and Dad prepared was toasty warm. We traveled for 18 hours and are now exhausted - neither of us slept much (or at all) on the plane, so we are going to just hit the hay.

Goodnight.

Last post from Bangkok - 28 weeks, 6 days in utero

2008-12-22T06:41:00.000-08:00

Today we did not do much to materially prepare for our trip: we just finalized some bank stuff and picked up a few gifts to give to relatives of friends in Seattle. But we did a lot of emotional preparation - we spent most of the day at Pui's mother's place. We said our goodbyes to Pui's family and my cats over a couple of delicious meals and lots of conversation. There are so many reasons to like Bangkok and Thailand: the weather, the food, the people, the scenery, etc., etc. It's not easy to go.

Now I have one last re-packing to do, and then we need to try to get some sleep before going to the airport. Once on the plane, I'm thinking of obnoxiously singing "Up in the air, junior birdman!" at the top of our lungs for hours on end until we either get the front bulkhead aisle seats, we get upgraded, or they physically restrain and gag us. I guess laryngitis is a possibility as well.

It will probably be a day or two before our next post, from Icebox Seattle.

Good bye, Bangkok!

More preparation - 28 weeks 5 days in utero

2008-12-21T07:38:00.000-08:00

Today was mainly a day of getting ready. We had a great lunch with Pui's family at a belt sushi place, where we ate ourselves silly. Then we shopped for about five and a half hours. We returned to our condo and dragged up all the stuff we had bought over the last two days, and I realized that the bags I had packed already wouldn't cut it. So I unpacked them and got out the Big Purple Bag. I put all the heavy stuff in the Little Gray Bag, most of the rest of the non-clothes stuff in the Middle Red Bag. The Big Purple Bag is packed with an amazing amount of clothes, and actually weighs just over half of the Little Grey Bag. I got everything in and packed and managed to watch "Transformers" on TV at the same time. I imagine I'll have dreams of the suitcases transforming into Customs Officials.

I talked to my parents this morning - they were preparing for a storm they expected would hit Seattle that night. They have an emergency generator all set and ready to go. It was snowing hard when we talked, and they expected high winds to arrive in a few hours. Snow to weigh down trees and wind to knock them over. Fun times! Here in Bangkok it was sunny and 88 degrees F. We're going to have some adjusting to do!

A busy day preparing - 28 weeks 4 days in utero

2008-12-20T06:32:00.000-08:00

Another very busy day for us. We left in the morning and took care of phones and internet, shopped for some warm clothes, visited the hospital to get our full records and some last-minute questions for our doctor (He's very good), got cat supplies and returned home. Once there, we packed up the cat supplies and toys and loaded them into the car.

The cats - Prima and Zorro - were already freaked out by the suitcases being filled. When I pulled out the cat carriers and started packing up their food bowls and toys they knew something was up. Prima retreated to the bedroom, and Zorro hid. I gathered every thing I had packed and left to load the car. As soon as I was out of the door, Zorro re-appeared. When I returned a few minutes later, he kind of glared at me like he was saying "You shouldn't scare me like that!" and then sat comfortably by the porch screen.

So I grabbed him and stuffed him into one of the carriers.

I grabbed and stuffed Prima also, and we brought them to their new home: Khun Mae's house. The cats had previously charmed my mother-in-law and sister-in-law, so they agreed to take them. Once here, both cats immediately dashed under the bed in the room we freed them (Pui's old bedroom). It wasn't long before Prima was exploring the house and totally charming everyone all over again. But Zorro is still under the bed, glaring balefully at an entire world that is so unjust as to allow such indignity.

It feels good that we have found them a good home where they will be given the care and attention they deserve. We are staying at Khun Mae's tonight, partly to re-assure the cats and partly to re-assure ourselves.

My last day at Agoda - 28 Weeks, 3 days in Utero

2008-12-19T06:53:00.000-08:00

Seattle is now 3 days away. Today was my last day at Agoda. It was a little sad, but it's all for the right reasons. My Boss, Khun Joost, took me and the entire QA team (And the IT Manager) to a farewell lunch. The picture below shows, from left to right, Nong, Yung, Arjan, Chidchai, Yong, Joost, and Nok.

I've never seen a harder-working QA Team, and I'm going to miss them, Arjan and Joost, and even the hectic schedule. Agoda was not an easy place to work, but it was never boring, usually interesting, and often quite entertaining. I turned in my computer, my insurance card, and my elevator pass and walked out of the Agoda offices... only to walk right back in. Without an elevator key card, I couldn't summon an elevator to take me down to the lobby.

Immediately after leaving Agoda, for the last time, Pui and I went home to meet a delivery van bringing two big boxes full of baby supplies we had bought for Nong Pat before the HLHS diagnosis. It was a little hard sorting through the material, deciding what to take and what to leave behind, knowing that even if he recovers quickly he will be too big for most of what we have before we can use it.

I hope our second child is a boy, because boy or girl they will have a lot of blue infantwear.

We had a nice dinner with friends, and returned to continue packing. Now it's late, the bags are packed with what we have so far (this is just the first time - I'll probably re-pack at least twice) and we are ready to sleep: tomorrow is another busy day. I'll bet I can get at least 1 re-pack in.

28 weeks, 2 days in utero. 5 days until Seattle

2008-12-18T08:05:00.000-08:00

Today is Thursday and we arrive in Seattle early Tuesday morning, and we still have a *lot* to do. Today was a long day. It was Pui's last day in the office, and I got to play 'beast of burden' bringing her things down to the car. I think my Mick Jagger impersonation isn't very good: I only got worried looks and puzzled frowns.

We managed to get the Skype set up at Pui's Mom's house. We set up a repeater and had a brief conversation from the upstairs room to the dining room. The quality over 35 feet is surprisingly similar to the quality from the other side of the planet. One Skype, one world. I think it will help a lot to be able to see and talk to her Mom like she's in the other room. I know it helps me.

Now it's late and I'm a little punchy. So is little Pat - he's been trying out some calisthenics, to Pui's discomfort. And we have months to go. We're pulling for him to get as big and healthy as he can, and if it means a little discomfort for Pui, well, I will sympathize as much as I can. ;-)

28 weeks 1 day in utero

2008-12-17T06:10:00.000-08:00

Today a bunch of Pui's friends took her out to lunch, and she had a great time. Leaving Bangkok is going to be tough for her. I had some troubles when I came here a year and a half ago, but I had almost six months to prepare and get mentally ready. Pui has about a week. And she's pregnant, a time when she would really like to have her friends and family around. She's very brave. Fortunately, we will have friends and family around - just not the ones we originally expected.

We are beginning to pack. It's odd to be digging up as many warm clothes as we can find when it's so warm here. It's after 9 PM and 81 F, and I'm packing heavy wollen sweaters. Pui has a bunch of new clothes from friends and family. She's going to be nice and warm, and fashionable too! We're also trying to figure out what of the baby stuff we bought here to pack. The Carriage is out (won't fit in the overhead compartment) and one of the breast-pumps is on the cusp (220V only). Do we bring the bottle-warmer, or not? What about the very cute but not very warm clothes we bought? Maybe.

:-)

28 Weeks in utero

2008-12-15T22:35:00.000-08:00

Plans for travelling from Bangkok to Seattle are proceeding apace. Both Pui and I are wrapping up our jobs and getting everything in order. Pui has most of the work to do - we need to take care of taxes and payments and all sorts of financial stuff. I am mainly planning what to pack and wishing I could be more help to Pui.

Everyone we know is being very helpful and supportive. My workplace has been very accommodating, especially since we are leaving with little notice right in the middle of a very busy time. Pui's company has been even more helpful.

After work today we spent no small amount of time trying to set up a strong wireless signal so Pui's mom could easily talk to us on Skype when we are in the US, but still don't have the signal we want. We'll make another go at it tomorrow.

Now it's late, and time to get some sleep.

Hello! First Post - 27 weeks, 6 days in utero

2008-12-15T05:39:00.000-08:00

This is the first post in the blog we - Pat's parents - are going to have so that anyone who wants to follow his progress can.

Pat has HLHS - Hypoplastic Left Heart Syndrome. This is a serious condition that is invariably fatal if untreated. We are going to get him the best treatment we can.

The picture is one we got from ultrasound from 25 weeks 6 days, and is the clearest we've seen so far. How cute! Who would have thought a digital rendition pieced together from sound waves could be so cute?