Hair

It seems almost sacreligious at this point to post pictures of Andrew that are less-than-flattering, but I want to make sure that I immortalize everything about him, both the good and the....not so good. The steroids definitely did a number on him, which appeared most prominently in his swollen cheeks and hair loss. I know some of this may have been due to natural hair loss in babies his age, but I think the steroids may have accelerated the process. These pictures have a good angle on the bald patches that were left on his head.

The puffy cheeks were cute in a way, especially since we were expecting them to diminish over time. Some of the lesser side effects were not cute, but sometimes funny....they read like a steroid warning label. He had a little acne on his chin...just a couple of small bumps. And though he was losing hair on his head, he had plenty of hair in other places. On his chin, on his chest, and on his legs; he was like a little old man.

One hair location that I don't think I can blame on the steroids is his forehead. He was born with hair coming all the way down to his eyebrows, and while most of the other "baby hair" rubbed off as it was supposed to, this just got thicker and darker. I'm guessing my Greek and Italian blood had something to do with it...let's just hope that any future babies (especially girls) don't share that trait.

Home Again

No news, but we're home safe and sound.

I know that not everyone reads this blog every day, and that each day some people are still discovering the news that Andrew hasn't made it. I hate that people have to find out in such an impersonal and piecemeal manner, but in some ways I feel like we're going through the same process. We wake up every morning and have to remind ourselves that we aren't going to visit the hospital today. I still have on the armband that identifies me as a NICU parent; there's no real reason that I haven't taken it off, but I've grown used to it and it feels like nothing is permanent until it's off my wrist. I'm not deluded enough to actually believe that, but it is a nice memento.

Thank you all for the kind emails, cards, and calls. This blog's continuation is a tribute to you as much as it's a tribute to Andrew.....it is a place to celebrate his impact on all of us. The pictures and stories will resume tomorrow.

From the road

D and I have found ourselves the unfortunate beneficiaries of a bunch of newfound free time. We would give it up in a second, but for now we're going to take advantage. So, I'm writing this from a hotel room in San Francisco, where I was sent on business. I'm working and D is grading papers and trying to relax...hopefully the hotel spa will help.

I'm going to cut this short so I don't have to type on D's iPhone keypad any longer. More when we get home tomorrow night.

Lip Cuteness

Here are the pictures I mentioned yesterday. I know they are bittersweet, but I hope everyone enjoys seeing Andrew free from tubes and gadgets. The disparity between this and his usual assortment of gear really emphasizes how much support he needed. A situation necessitating such support for years (perhaps forever) is really not the kind of life we wanted for him.

On another note, there was a comment asking about Willow...she thanks you for your concern. She's doing much better since our visit to the vet. The steroids had some not-fun side effects, so we quickly discontinued those, but she hasn't shown any signs of pain recently. We've been trying to make her take the doggy stairs instead of jumping up and down from the couch; that's a game that we don't always win, but she's been better about it recently. All in all, she's acting much more like her regular self, and we're happy with her recovery.

Precursor

There wasn't much to say today, so I want to talk about tomorrow. I plan to post some pictures of Andrew tomorrow, and I wanted to give everyone a heads-up....the pictures are from after his breathing tube was removed. He was still very much alive at that point, but I know it may be too soon for some of you to even think about the end, and these pictures may stir up those thoughts. Personally, I think he looks beautiful and peaceful, and I know from being there that he was completely comfortable. He was on my lap the entire time. His face was a little red from the tape and his cheeks looked even bigger than normal; there was no tape to keep them under control. His upper lip is completely visible, and looks just like mine.

Anyway, the point is, don't tune in tomorrow if you don't want to see these pictures. Wait a couple of days and I'm sure there will be something more innocuous on the blog's front page.

Weekend

D and I had a nice weekend, and it helped get me ready to go back to work tomorrow morning. On Saturday, D and her family upgraded the backyard with a new set of sprinklers and a beautiful new path. There's some remaining brickwork and planting yet to be done, but the completed portion is quite an improvement. I'll post some pictures in a few days. Today D and I took Willow to dog beach, where we've been only once in the last six months. Willow got to run around in the sand and get some exercise; she also met fifteen or twenty dogs along the way. Some pizza and a recorded Chargers game ended the weekend nicely.

Medical Professionals

I know I've talked about Andrew's nurses before, but I really can't overstate their importance. Having the right nurse sometimes meant the difference between a good night's sleep and a night filled with anxiety; fortunately, he had lots of good nurses. First and foremost were his "primaries," nurses that had Andrew whenever they were working. Having primaries enabled Andrew (and us) to get consistent care and support from someone that knew him well. Through his five months, they spent as much (or more) time with him than we did, and came to understand his likes, dislikes, and idiosyncrasies. They made cute little signs listing all of Andrew's favorite things, and posted them in his room for any nurses that didn't know him as well. They were just as protective of him as we were, and we really came to think of them as family. When the time came for us to let Andrew go, they were both there to make sure everything went exactly right. Now, a week later, we miss them as well.

I have kept this blog name-free, except for Andrew's, and I won't change that now to list every nurse that touched our lives in the last five months. Fortunately, I don't need to....every day there are new NICU babies that get to experience their care firsthand. I would, however, like to mention just a few of his non-primaries by deed, if not by name:

• J was at our hospital when Andrew was born, and stabilized him until he could be transported to Childrens. She was always there to listen to our concerns and provide a comforting hug.
• J is a 30-year veteran that had Andrew at every stage of his progress...on ECMO, on hi-fi, on conventional ventilation, and extubated. Her kindness and experience really helped us through some hard times, and she was particularly attentive to whether D had been able to hold him recently.
• K was a night nurse that gave Andrew a bath during almost every shift she worked. That simple act of cleaning him up, making him smell like a baby (with a touch of lavender), and sharing any and all Andrew-related information over the phone really made us comfortable with his care and appreciative of her extra effort.
• R constantly told me how beautiful Andrew was (though they were all jealous of his eyelashes). Even at his puffiest, while sedated and recovering from surgery, she saw the cuteness shining through, and I loved when she pointed it out.
• S is a night nurse was there several times when we went in after hours; he quickly figured out just what Andrew liked, and was always willing to get him in the right position, with the right oxygen levels, so that he was comfortable and happy.
• E often works with preemies and said that her favorite part of the job was holding the babies before they get to go home. The nurses never got to hold Andrew for a long period of time, but her sweetness and kind heart came through nonetheless.
• One veteran nurse, N, bought Andrew a pair of socks with little duckies on them and called him her boyfriend.
  
• One respiratory therapist, E, would sing to Andrew as she worked. On Monday when all the nurses were coming by to say goodbye to him, she came and sang to him one last time. She has a beautiful voice, and it felt like a wonderful tribute to him and to us that she would share her song with us.
• C is a respiratory therapist that was always trying to look ahead to making Andrew's next extubation successful. She came by to check on him often, and was very supportive of him (and us).
  
• L asked me (and my mom) about my grandma whenever she saw us; when Yia-Yia passed away, she was very kind.
  
• M got her hands on several CDs of soothing piano music, and offered to put it on his mp3 player to help him relax.
• J managed to remain cheerful even on the most frustrating of days. Though we were too disappointed with Andrew's progress to fully appreciate it at the time, her optimism brought out the good in the situation, however tiny.

Though the nurses spent twelve hours per day with Andrew, the other staff also had a significant impact. We met at least ten neonatologists, three nurse practitioners, two surgeons, four anesthesiologists, a dozen respiratory therapists, two nutritionists, three infectious disease specialists, two physical therapists, two occupational therapists, and five social workers while we were there.

We got to know each of the neonatologists and really learned about their different styles of care. Their quirks were endearing, their dedication was apparent, and their actions kept Andrew going no matter what obstacles appeared in his path. They endured our endless questions, they always collaborated to come up with the absolute best course of action, and they kept us well-informed throughout the process. They also gave us their honest opinions about Andrew's progress and prognosis; these were sometimes hard to hear, but we appreciate their candor.

The respiratory therapists gave Andrew breathing treatments, kept his tube clear of condensed water, and generally made sure he continued to breathe. They used whatever technology they had to in order to make it work, including several different ventilators, custom tubing, nitric oxide rigs, helium tanks, and hand-breath bags. Since many of his problems were lung related, he got extra attention, which we really appreciated.

Aside from the nurses, doctors, and RTs, our social worker was particularly wonderful, and really helped us navigate the NICU experience. She set up family conferences, helped us with visitation issues, and was generally available to talk or provide comfort at any time. She helped us find our way around in the early days, supported us through a long five months, and made everything as easy as possible on the way out.

As you can tell, it takes a lot to keep a NICU going, but it's a well-oiled machine. In the end, I am not exaggerating when I say that the doctors, nurses, and other staff at San Diego Childrens Hospital are heroes. They saved Andrew's life many, many times, and allowed us to get to know him and experience our son's beauty and personality. They also save other babies every day, and provide that same wonderful opportunity to families all over southern California. It was plain that they loved Andrew and that he touched their lives just as they touched ours. We will forever be grateful.

Awkward Moments

I stopped by the grocery store to get some lunch stuff today. As I was checking out, the register printed a coupon. Generally the cashier would put it together with my receipt and hand it to me on the way out (or throw it in a bag); instead, she handed it to me and said, "Can you use this?" I took it and looked at it.....infant formula. I have no idea why the Ralphs computer associated this with the lettuce, tomato, and bread that I was purchasing, but it was a bit of a shock.

I shook my head and said, "No." She followed up with salt in the wound. "No more babies?" Stunned again, I gave her another shake of the head. I realize the question was completely innocuous, and that she probably assumed my kid(s) had grown past the infant stage and wouldn't require formula; it was still surprising.

I'm sure these things will have less emotional impact after some more time has passed.

Time Flies

During Andrew's stay in the NICU, every day seemed like the longest day of our lives. Between a full day of work, constant calls to the nurses, an afternoon visit, driving to/from the hospital, pumping for milk, and continual anxiety about his status, time seemed to stretch. It definitely felt like a long five months.

Now that it's over, however, the experience seems to be compressed in my memory. While people were here for Thanksgiving, I found myself telling stories or referring to events that took place "a month or two ago." When I went back and thought harder about those particular events, I realized that they all took place before Andrew was born, without exception. It's as if the entire five months has condensed into a month in my mind. I suppose this phenomenon came about because our normal lives were on pause while dealing with this ordeal; it's as if someone just hit the "Play" button again.

I don't know how this will feel as we move forward. One one hand, I feel like we've lost time and need to catch up with our lives. On the other, I wouldn't give up the memory of a single day spent with Andrew. I worry about what would have happened if he had made it and we had gone through the entire process of getting out of the hospital and dealing with longer-term issues; I fear that we would've lost years of our lives, and lost some of ourselves in the process. As it is, I feel like we got to spend some wonderful time with Andrew, but didn't lose our personalities in the process. Our lives have been enriched, rather than devastated.

Helping Out

I hope everyone had a wonderful Thanksgiving. Ours was a very nice 7-person dinner at home....great food and great company. I'm guessing there won't be much blog reading on turkey day, or even the day after, so I'll keep this short.

I had a call from the organ donation group earlier this week, during which I answered a long series of questions about Andrew's history in order to determine his candidacy for donation. The set of questions is mandated by law and they can't assume anything; they have to ask each and every question and get a verbal response, which is then recorded for legal reasons. The call included questions that obviously applied (any recent surgeries, recent transfusions, etc.), but also included some off-the-wall questions for a five-month old that's been confined to a hospital (sex, recreational drugs, visits to Africa, mad cow disease, etc). It may have been sad if the questions weren't so outlandish...fortunately I was able to find the humor in the situation. I haven't found out whether he was considered a valid donor, and I don't know if we'll ever know what tissues went where. Our hope is that his heart valves especially are used to help babies with major heart defects. In our five months in the NICU, we saw many babies with their chests open after cardiac surgery. If one of those babies could benefit from a valve transplant, I feel like Andrew will have made a difference in yet another life.

I'm also looking into options for milk donation. We still have a freezer full of bottles, and we'd love to be able to help someone rather than just discarding them all. There seem to be several options, ranging from global aid programs to casual email arrangements. One option is the International Breast Milk Project, which sends 25% of all the milk collected to Africa for children whose mothers have HIV/AIDS. The rest of the milk stays in the US and is processed into milk fortifier, which is then used in NICUs across the country. This program requires a blood test, a DNA test, and boxing/shipping all the milk to the program via FedEx. Another option is donation to a Milk Bank. This also requires a blood test and milk transport, and the nearest location is in San Jose. The milk all goes to help parents of children with lactose issues, in NICUs and across the country, but the testing/packing/shipping process seems a bit more strenuous; I'm trying to find an option with minimal difficulty for D, as she's been through enough. I've also found people offering to set up milk donors with those who need it via email. Though there would certainly be less oversight and bureaucratic red tape, the concept is a little creepy and I don't think I want something quite that unofficial.

That's it for now....Happy Thanksgiving.

Mommy and Me

Today was another pretty relaxing day, focused mainly on preparing for Thanksgiving and getting Andrew's arrangements squared away with the mortuary. I thought I was okay while signing the paperwork, until I found myself showing the mortician pictures of Andrew on my iPod Touch. I managed to get through it.

We're thinking about taking a vacation to get away and decompress; we'll see if I can take more time off work, as I've already relied too heavily on the rest of my team during the last five months.

Keeping His Memory Alive

With an abrupt ending to such a long ordeal, I know that it will be difficult for everyone to obtain their own form of closure, whatever that may entail. We certainly miss him already, and wouldn't want anyone to have to quit Andrew cold-turkey. To that end, I'll keep posting as long as people keep reading. For a while, it will be 100% Andrew....I still have thousands of pictures, hundreds of videos, and plenty of stories that haven't made it to the blog. That will blend into updates about D and me. After that, who knows?

Today we tried to relax and unwind as much as possible. We ran a couple of errands, cleaned the house a bit, and worked on some keepsakes (like scanning the prints above). We talked a lot about Andrew, about the future, and about our feelings. While there were intermittent bouts of tears (I'm sure the other customers at Islands thought we were crazy), we are also relieved. We no longer have to worry about him...about bad blood gases, CT scans, and upset "episodes." It's strange not to call and check on his progress every few hours, and unfathomable to go without a hospital visit. I have been at Children's Hospital every day for the last 157 days....the freedom to stay home is sad and refreshing at the same time.

Closure

We went in to the NICU this morning, spent some quality time with Andrew, and spoke with the doctors one last time. We discussed his CT results and his general prognosis, and we made sure everyone was on the same page....we and all of the doctors were in complete agreement that he had a minute chance of long-term survival, especially in a manner free from severe developmental deficits. We discussed how the day would progress, then spent some more time with Andrew. D held him, we took some more pictures, and we got another set of footprints on a keepsake ceramic tile. All of Andrew's favorite nurses happened to be working, so they stopped by his room and said their goodbyes throughout the day; they will really miss him, and it was a wonderful reminder of how much Andrew has touched the lives of everyone around him.

After Andrew fell asleep, they started a morphine drip to keep him comfortable; he's such a bruiser that they had to turn it up a few times before he even felt it. We sat next to his bed and held his hands until he was sleeping so soundly that he wasn't taking extra breaths above the ones the ventilator was giving him. We then moved him to my lap, added another sedative to guarantee complete comfort, and removed his ventilator tube. It was the first we've seen his beautiful upper lip in a long time (it looks just like mine), and we were able to say goodbye and kiss his little mouth. He was completely peaceful snuggled in my arms, and he slowly drifted away. At 7:03pm, the doctor confirmed that he was gone.

Of course this ordeal was not what anyone was expecting during our pregnancy. We've been heartbroken throughout the last five months, and we were devastated when we realized he wasn't going to recover as we had hoped. However, given the eventual outcome, we're confident that today went as well as it possibly could. We had a wonderful time with him the last few days, and were able to bid him farewell and obtain some measure of closure. He fought long and hard, and he was a brave little boy; today we simply allowed him to stop fighting.

Andrew Christopher Ryan
June 15, 2007 - November 19, 2007

Confirmation

Today we got back the results from Saturday's CT scan. Though we had already mostly made our decision based upon Andrew's long-term prospects, the images of his brain provided the confirmation that we needed to be sure. He has severe enlargement of the ventricles, which are open spaces filled with fluid in the center of the brain. Worse, he has extensive damage to his frontal lobe, which controls higher-order brain functions. The frontal lobe is generally considered the portion of the brain that makes us human, and plays a part in impulse control, judgment, language production, working memory, motor function, socialization, and spontaneity. Andrew's deficits are sizable; though the human brain can sometimes compensate for damage, those missing portions will never physically recover. These results essentially guarantee that he would never be able to progress to a normal adult mental capacity.

I realize that some of this seems sudden and overwhelming. Though this is his first brain CT, he has had previous brain ultrasounds that did not indicate this level of damage. Andrew's been very sick during the past couple of weeks, including infection, fever, digestive issues, and the necessity for higher levels of ventilation support. The longer infants remain on a ventilator, the more likely that long-term brain damage will result; these scans represent a not-unexpected complication that we have known was a serious possibility. They also correlate with recent signs of behavioral deficits that Andrew has shown.

What this all means, in the end, is that we have decided to remove Andrew from life support. This is obviously a difficult decision, one that no one should ever have to make for their child. However, after seeing the CT scan, I believe the progression of his disease has essentially made the decision for us. In anticipation of this outcome, we spent the weekend saying goodbye, and we are as close to at peace with it as one can be in this situation.

Tomorrow (Monday) we will go in to the hospital, meet one last time with the doctors, and say our final goodbyes to Andrew. After we spend some quality time with him, they will remove the ventilator tube and keep him comfortable with medication until he passes away. They will provide him with whatever he needs so that he won't suffer at all; at that level of sedation it will be completely peaceful. We'll also be able to hold him without any of the wires or tubes.

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Today we took lots of pictures, got hand- and foot-prints as keepsakes, and cut some of his hair to take home with us. We each got to hold him again, during which he was alert, interactive, and very comfortable. Knowing what we do about his progression and seeing firsthand some of the neurological signs that he's been having recently, it was especially rewarding to spend that time with him.

His primary nurses are on today and tomorrow, and some of his other favorites have also had him recently. All of the doctors and nurses are heavily invested in Andrew as well, and have been wonderfully supportive and compassionate through this difficult time; we know they'll miss him very much.

I don't know that I'll be in the mood for extensive writing tomorrow, but I will post something quick when it's over. We thank you again for your support through the last five months. I know it's been difficult for everyone, and that this abrupt ending may come as a shock and be very emotional for you all. One of my biggest regrets about the situation is that Andrew never got to meet the hundreds of people that have been pulling for him this entire time. It's not fair to any of you that his only method of interaction was through my comments on this blog...you all deserved to see him up close and personal the way that we did.

We hope that our loss can provide hope, and even salvation, for other parents like us in the future. We asked the organ donation program at the hospital to evaluate Andrew as a potential candidate. Due to the course of his disease and legal issues around the method of passing, he can't donate full organs; he can, however, provide tissues like heart valves and corneas, which can be lifesaving and/or life changing, for the recipients.

We will likely spend the next few days (at least) at home by ourselves. Though the arrangements haven't yet been made, Andrew will be cremated and we will not be having a formal funeral service. Though his short life was obviously tragic, his presence also provided us with great joy, and we don't think that a somber ceremony is an appropriate way to pay tribute. We may have an open house, either here or in Orange County, at some point in the next few weeks.

Nice Day

We had a nice day with Andrew today. It was emotionally difficult, but we got to spend some quality time with him, and then we each got to hold him. After that, he took another field trip to radiology for a CT scan. They scanned his head and belly, looking for confirmation of neurological deficit in his brain and getting another close look at his digestive system. They hope to learn from Andrew by correlating his behavior with his brain status; they've already seen some abnormal behaviors, and they expect to see corresponding defects in his brain physiology. Hopefully this will help with prediction of outcomes and courses of treatment for future infants.

He behaved himself during the trip to radiology and back, and has been doing fine since. They haven't made any modifications to his ventilator settings, but he's comfortable and stable. We haven't heard from the radiologist about the test results, but I'm sure those will be discussed when we talk to the doctors again on Monday.

In the "piling it on" department, we took Willow to the vet tonight. She's been yelping a bit when we pick her up recently, and she's shown some delicacy in her running and jumping. After a series of x-rays of her back and pelvis, they discovered what looks like a compressed and calcified disk in her spine. It didn't seem as pronounced as it could be, and she is acting normally aside from this transient pain, so they didn't deem it necessary to keep her there or perform surgery. We got a prescription for painkillers and steroids to help her recover at home; now it's just a matter of keeping her from re-injuring herself.

At a Loss

As I mentioned, we had a meeting with the doctors today...more on that in a moment.

In the last five months of posting to this blog, I've gotten a lot of praise for my writing abilities, my knowledge of medical jargon, etc. Now I find that I'm at a loss for words. I was standing at Andrew's bedside today, looking into his beautiful eyes, holding his hand, and stroking his face. He looked back at me, his eyes brimming with personality and life, he grasped my finger, and he calmed at my touch. I thought about how to express that moment here, and I found I couldn't do it justice. Nothing I can write, nothing anyone can write, can begin to describe the depth of love that I feel for my son. He's sick, but he's perfect. He's balding, puffy, and covered in wires and tubes, but it all disappears so quickly when he looks into my eyes. I treasure every moment like this. I would do anything for him, and I can and will make every decision with only his best interest in mind.

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We talked with the doctors today, and if you hadn't guessed already, it wasn't a happy conversation. While Andrew makes continued improvement on a day-to-day basis, at least this week, his long-term prognosis is not as positive. The doctors have very little confidence in his ability to sustain himself long-term after extubation. If he failed the next extubation they would likely suggest a tracheostomy, which would insert a tube into his airway through a hole in his neck. This is generally considered a more long-term ventilation solution, and would likely require an additional hospital stay of one to two years. After that, he might be able to come home on a ventilator, but there would be no guarantee of him ever speaking or breathing on his own.

Unfortunately, the doctors estimate only a 5% chance of successful extubation. Though that number sounds surprisingly low, his medical history suggests that it's probably pretty accurate. He has to overcome a compressed bronchus, chronic lung disease, weak accessory muscles, and a tendency to clamp down and stop breathing when he gets upset. It's very difficult to stabilize him without a guaranteed airway; in the weeks that it would take him to wean to less support, he's bound to need some stabilization.

Even a successful extubation would be a long, hard road. It would start with continued weaning on his ventilator, then a significant amount of sprinting, and then an attempted tube removal. Just to get to that point would require at least a month. He would then start on something called BiPap, then wean to CPAP (which he was on last time), then move to high-flow nasal cannulae. Eventually, after a period of months, he may get to low-flow nasal cannulae, which would allow him to come home with a tank of oxygen. Even this best-case scenario would include its own difficulties and drawbacks. For instance, having never had any positive experiences involving his mouth, he wouldn't be able to eat by mouth and would require tube feeding for years. Even years later, he may not have the lung reserves to ever eat by mouth...simply the stress of chewing and swallowing while trying to breathe could kill him.

The more pressing long-term issue is the risk of developmental challenges. The doctors suggest a 95% chance of developmental issues; however, no one can predict the severity (or full range) of shortcomings. The four things they worry about are vision, hearing, cerebral palsy (muscular), and mental defecits. Even things that appear to be working now (his sight, for example), could deteriorate over time. At the serious end of the spectrum, he could be severely mentally handicapped, he could need hearing aids or be completely deaf, and/or he could require a wheelchair/crutches/braces/etc for life.

I don't want to keep piling on all of the awful possibilities. Suffice it to say that between the small chance of successful extubation and large change of awful developmental issues, we have about a 1% chance of having a normal five year old. This leaves us with some very difficult decisions. We will talk to the doctors again on Monday, at which point we will likely decide whether to continue forward toward another extubation. As we've all seen, complications have become the rule rather than the exception, and putting him through at least another month of trials with very little chance of success may be more than we want to impose on him.

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I know it's insensitive to put all this on a blog post...it's like breaking up with someone via email. I'm sorry. I know this will ruin some weekends/weeks/months. I'm sorry. I know some people won't get this until Monday, and will feel left out. I'm sorry. I know some people will disagree with whatever decision we make. I'm sorry. I would call everyone we know to discuss this personally if I could, but it's not logistically feasible, nor am I emotionally capable of verbalizing this at the moment. If you're still reading this blog after five months, it's because you truly care about Andrew and about us, and hopefully will understand. All I can do is lay it all out there.

Rest assured that we will do what we think is best for Andrew; this is not a decision we take lightly. We also have the utmost respect for every doctor and nurse at Children's Hospital, and owe them all the quality time that we have had with him. Without them, I would never have seen my son's personality shine through, and I appreciate that they have given me that opportunity. Obviously this weekend will be an emotional one for us, and I don't know how much I'll be posting. No final decisions have been made, and nothing irreversible will be done before Monday. We won't make our final decision until we talk to the doctors again and discuss the situation further, but please be prepared for any outcome.

D and I are giving each other the strength and comfort we need at this time. We thank you in advance for your understanding and support....we welcome emails, but aren't ready to talk about this yet. Please refrain from sending flowers/gifts; we very much appreciate the sentiment, but they can be an overwhelming reminder of an emotional situation.

Eyes Open

When we arrived at the hospital today, they had just turned off Andrew's paralytic drip. Within a half hour, he was wide awake, looking at us, and moving all his extremities. Though he was groggy for the first few minutes with his eyes open, he didn't get upset enough to cause himself any problems. He was very cute and well-behaved the entire time we were there, and that has continued since we left. D bought him a new NICU-approved mobile (all plastic, no fabric), and he seems to be enjoying it so far.

His blood gases have all been good so far, and they've been able to wean further on his ventilator settings. They're going to take it slow, alternately turning down his rate (breaths per minute) and pressures after each gas (six hours apart).

We have a meeting with the doctor tomorrow. I don't expect much new information, but we'll at least get the plan straight.

Drew's Blog by the Numbers

A few fun facts about Andrew, this blog, and you:

1. Andrew turns five months old today, at 4:58pm. The counter with his age seems to be an hour off, but it's actually correct....he was born during Daylight Saving Time.


2. This is the 300th blog entry, which averages out to almost two entries per day.


3. As of this post, there have been more than 25,000 hits. Many of them are obsessive family members with a hair 'refresh' finger, but there have still been thousands of unique visits.


4. Those visits have come from at least five different countries...US, Spain, Italy, Costa Rica, and the UAE.

Thank you again for everything....Andrew has built quite a community of fans, and he appreciates the support.

Here's a map of the last couple hundred hits from the US:

And a weighted map of all his US hits. Obviously Andrew has quite a bit of family in California, but even the lighter shades of green can represent hundreds of hits.

So Far, So Good

Andrew's still on the conventional ventilator and has been doing well today. Good blood gases have weaned him down from 26 to 20 breaths per minute, even with the paralytic drip in place. When a doctor comes around this afternoon, we'll see whether they are going to remove the paralytic and let him wake up again.

Putting His Foot Down

Andrew decided today that he really didn't like the high frequency ventilator. In the morning, he had a high heart rate and blood pressure, so they gave him extra doses of Ativan, along with some morphine. It didn't seem to have any effect on him, and they went up on his sedative drip. They also had to turn up the ventilator pressure.

I was in Sacramento all day, but met up with D at the hospital in the afternoon. We noticed that he was moving quite a bit; with the paralytic, 'quite a bit' means that he was moving his foot slightly, pointing his finger on one hand, slightly moving his other arm, opening his eye and occasionally breathing on his own. Since breathing above the hi-fi can cause problems, this is generally where they would turn up they paralytic.

After talking to the doctor, they decided that perhaps Andrew should stay on the same dosage, but be transfered to the conventional ventilator. He still wasn't down to minimal settings on the hi-fi, so this was a bit unexpected, but we were certainly in favor of the switch. So, as of 6pm this evening, Andrew has been on the normal vent. His blood gas tests have been better than they were before the change, and they've even started to wean his settings. Let's hope he can keep it up.

There weren't many other changes today. They'll likely start to turn down the dosage on the paralytic, as he won't be able to fully breathe on his own until it's gone. Since the major development occurred so late in the day, we haven't talked to the doctor about a timeline for his next steps.

Balding Baby

Though these aren't very good pictures, Andrew hasn't been very photogenic recently.

This is Andrew's version of Donald Trump's combover. D had just brushed everything into place...normally it's completely out of control.

His face is starting to swell again, due to being sedated/paralyzed for a few days. However, this is the first shot with his bandages off, and his scar looks pretty good.

Two Tidbits

There wasn't much change at all in Andrew's status today, so I thought I'd focus on two things I forgot to mention yesterday.

1. The bandages on Andrew's stomach are gone. The surgeon came by and took them off yesterday, and his scar looks great. If possible, it looks even better than it did last time, and this includes two incisions in the same spot.
2. Andrew is off contact isolation. I don't remember if I ever mentioned the reason that we have to wear gloves and gowns in his room; essentially, he had a positive test for a bacteria called 'steno,' which is a pretty contagious airborne bug that can affect those with compromised immune systems. Even though it didn't seem to be affecting Andrew himself, the fact that he was colonized (tested positive every time) meant that it was living on the plastic of the ventilator tube and could still be dangerous for other babies in the unit. In order to protect them, any time we were in contact with Andrew or his stuff, we had to wear gowns and gloves. Well, as of a negative test yesterday, we no longer have to wear a bunch of plastic....at least until the next time they take a sample and do another test. :)

Okay, that's it for tonight. There were no changes, aside from some weaning on the hi-fi ventilator. He's approaching minimal settings, but it'll probably be a couple of days before they switch him back to a conventional ventilator.

I've got a busy week with work, but I'll try to get some new pictures up in between trips.

Another Field Trip

Andrew took a field trip to Radiology for a CT scan today. They unhooked him from the ventilator, gave him breaths by 'bagging him' during transport, and then hooked him up to a conventional ventilator in the radiology room. He behaved well throughout, and there were no respiratory issues. The interventional radiologist was also able to attend, so they were prepared to drain any abscess that was found.

On his previous x-ray and ultrasound, it appeared that there was air and perhaps some fluid in his lower chest cavity, just below his left lung. When they were able to visualize the same area with the CT scan, they realized it was below the Gore-Tex patch, in his abdomen, rather than above. They inserted a needle and drew out the liquid. Instead of finding pus (which would be in an abscess), they found old blood. This was quite possibly left over from the surgery and probably harmless; they took cultures of the blood to make sure.

The rest of the CT was uneventful. They continued the scan, but won't review the details for a couple of days. There weren't any obvious issues, so it finished and they wheeled him back to his room. Not finding anything serious was a good outcome, so the scan is certainly a success for now.

However, Andrew had another post-scan issue. A few hours later, he had some more blood in his diaper. Since then, he's had a couple more. Though this would normally be very worrying and point to a perforated bowel, they can pretty much rule that out from the scan. That again points to colitis, a simple internal inflammation of his colon. Unfortunately, there's not much that can be done for it, aside from what they're already doing. He's still on antibiotics, they've taken cultures of everything to look for anything unusual, and so far he's doing well on the ventilator.

So, the day was essentially a wash. The situation they were worried about appears to be nothing, but there's still an unexplained problem to keep an eye on. His test results recently have been better, pointing to a lessening of infection. His gases have also been good enough to wean the vent settings a few times. Since there are no obvious action items, they'll continue with the current plan.....they'll wean the hi-fi, switch him to a conventional vent, wean those settings, and then try to extubate. He's obviously a long way from that point, but it's still a good long-term goal.

I'll post again if we get additional CT results....if not, the next few days should be pretty boring. As long as his dosages are correct, he just lays there sleeping all day. It'll probably be a few days (at least) before they allow him to wake up again; they want to make sure his other issues are under control first.

Quiet Sunday

Not much new to report today. Andrew had a pretty good day, in that each blood gas seemed to be better than the last. This evening has produced a couple of less-good results, but they haven't had to go back up on the ventilator settings.

The plan is to take him to Radiology tomorrow in the late morning or early afternoon. He'll get a CT scan that covers from his neck to his groin, so they'll focus on the possible abscess but also get a look at his belly and (hopefully) his constricted bronchus. If one of the interventional radiologists is available, he may be able to perform any necessary procedures while still in the scanner; for instance, he could drain an abscess.

The range of possible findings is wide, so we won't know much more until it's over; last time, we didn't get the results for two days, so it might be a while.

An Explanation?

We just got a call from the doctor, and they may have something on which to focus their energies. His most recent chest x-ray showed some air in an area where there had previously been no lung tissue. This points to a possible abscess in the chest cavity, which would provide both a location for infection and a reason for its effects on his respiratory system. Tomorrow they will take him for a CT scan to get a better look at the area; while they're there, they'll also take a closer look at his abdomen. The reason they're waiting until tomorrow is so that they can wean the ventilator settings and get him more stable for transport. If the abscess is confirmed, they will try to drain it...I'm not sure if that would happen in radiology, or if they would wait until the CT was complete.

Though this certainly isn't a good problem to have, we are happy that they have a possible source for Andrew's continuing issues; we prefer to know what we're facing, rather than dealing with continued mystery. However, we also have to keep in mind that they've suspected an abscess in the same spot before, and further tests revealed nothing of concern. I think this time the suspicion is likely more accurate...we'll see what the tests show tomorrow.

Andrew's most recent blood gases have been better, and he seems to be more comfortable on the sedative drip. He's already starting to wriggle a bit, which might require refinement of his dosage. He's always had a high tolerance for narcotics....let's hope he never develops a post-NICU drug habit. He's had a good day so far, and we hope it continues until we can deal with the abscess and any other outstanding issues.

Rewind

I wish I could report some improvement, but I can't. Instead, Andrew is back on the high frequency ventilator, which is a significant step back. He had an okay morning, but in the afternoon he spiked another fever and had an elevated pulse, blood pressure, and CO2. Even with additional sedatives, there didn't seem to be any abatement. After two bad blood gases (high CO2, but more importantly, low pH), they decided to try the hi-fi. They also put him on a constant sedative drip, which we have been expecting ever since they started him on the paralytic. Without appropriate sedation, he could be awake and distressed, but not able to show it through the paralysis; having the drip makes sure he's comfortable at all times.

Generally, Andrew responds pretty well to the hi-fi, and his CO2 quickly drops. This time, however, he wasn't as quick to improve. He had another bad gas, and they turned up the settings. After a breathing treatment, an airway suction, and a while on the new settings, he had much better results. Since we left, his heart rate and blood pressure have been relatively calm, likely due to the increased sedation. His gases have been up and down....not as high as they were today, but higher than they should be.

All the signs of infection are present, though it's still hard to pinpoint the source. His urine, blood, and airway seem to be clean, which rules out quite a bit. The thought is still that his digestive tract is the issue, but multiple x-rays haven't shown any perforation of his bowels. It's obviously affecting his respiratory status, but there's no known pneumonia or other specific lung ailment. At the moment, we're in wait-and-see mode....nothing seems to have gotten obviously worse, but it certainly hasn't gotten better, either.

A lot will depend on which direction the infection decides to go. If his fever (which is gone for the moment) comes back, it could cause further problems. If the infection subsides, we can turn off the sedation and return the focus to ventilator weaning again. The last few days have been incredibly emotional and stressful, and it may not get better any time soon. Though we hope for the best, we would not be surprised by a call from the NICU that says he's taken a turn for the worse.

Needless to say, we'll be checking in with the nurse quite often....at the last few checks, he has been nice and stable. Unfortunately, I can't update the blog after every call, so rest assured that everything is relatively calm unless I post otherwise.

Pause

Andrew had another really rough day today. He had continued signs of infection in his blood tests and continued respiratory distress. High CO2, low oxygen saturation, and low lung volumes accompanied by high heart rate, high blood pressure, and general discomfort. All the problems seemed tied to him "clamping down," whether voluntarily or involuntarily. Though neither is really his fault, the respiratory issues are all tied to other larger issues.

They still don't know exactly what the problem is, but it likely involves his digestive tract. With the blood in his diaper yesterday, the possibilities include colitis (colon inflammation) or something similar. So far there haven't been any similar signs today, so it's possible the inflammation has subsided a bit. There are also several worse possibilities, but none of the tests (blood cultures, belly x-rays) have so far pointed to these options. That being said, the only thing we really know is that we're not sure exactly what's going on.

We do know that whatever is going on, it's having a detrimental effect on his lung situation. He's fragile, and a problem in one system can cause other, seemingly unrelated, problems. Today, those problems required several doses of sedatives and paralytics, extra oxygen, and a higher rate on the ventilator. In the end, after several 'episodes,' they decided to be proactive rather than reactive. Instead of waiting for Andrew to cause a problem and then trying to catch up with drugs, they've decided to put him on 'pause' until his body has time to recover on its own.

So, he's currently on a constant drip of narcotics and paralytics. This requires that the ventilator be turned up to full support (30 breaths per minute), but it also means that his body doesn't have to focus on breathing. It's free to fight off the infection, heal completely from the surgery, and start back up his normal digestive processes. He's back on antibiotics and temporarily off all feeds. His numbers (oxygen/CO2) all look pretty good, though that's to be expected at such high vent settings.

We don't expect this to turn into another month-long ordeal like the last time he was fully sedated. Hopefully the antibiotics will take effect and his infection will clear up in a couple of days. Then they'll let him come out of it and wean back down on his settings.

Needless to say this wasn't the best way to end an already exhausting week. The vibe in Andrew's room has been somewhere between somber and grim; the doctors have also spent far too much time in there recently. It's been scary, and he's not out of the woods yet. Until they either identify the problem and fix it, or until his body has a chance to heal, there's always the chance of worsening issues. Andrew (and we) definitely need some rest....hopefully it will be a relaxing, positive weekend.

Ending a Long Week

Andrew decided to give everyone a scare today. Around 4pm, he was sleeping comfortably and behaving himself. Apparently he then did his little "eyes snap open and he's wide awake" thing. That part is normal behavior, but then he immediately dropped his heart rate and stopped breathing. Obviously a low heartbeat isn't normally his problem, so it was quite surprising, as was the speed with which it happened. Unhooking the ventilator and "bagging" him brought his saturation up pretty quickly, but then he went back to his normal antics. He had a high heart rate, high blood pressure, very low lung volumes, and seemed to be generally distressed. Blood cultures were taken and initial test results showed an elevated white blood count and other signs of infection, so they started up some discontinued antibiotics. It eventually took a couple of hours and a lot of medication to get him under control. Meanwhile, I was 1000 miles away in Seattle.

By the time the nightly shift change was over, everything seemed to be back to normal.....at least until I got there. The one thing that was still working well was his feeding. He was already up to 28 cc per hour, scheduled to go to 30cc (full feeds) at 4am. When I got there, he finally looked comfortable and was sleeping peacefully. He woke up and was looking at me, then let us know that he needed a diaper change. We found some blood in his diaper, which then led to a belly X-ray. Though there was no sign of anything obviously wrong on the X-ray, but they're stopping his feeds for the night and canceling his overnight sprints. They'll get a follow-up in the morning.

Though this was probably just a reaction to continued infection and some respiratory distress, it was a scary reminder of just how fragile Andrew is. He's stable now so there's no immediate worry....try to have a happy Friday.

A Long Week for All of Us

The last couple of days have been a study in contrasts....Andrew has had some really good moments and some not great ones. The most recent problem has been recurring tightness in his lungs. It's hard to tell whether he's getting upset and clamping down, or whether his lungs are clamping down and making him upset. It's probably due to bronchospasms, which are involuntary constrictions of the upper airway. When they happen, even normal breathing doesn't really move much air in and out of his lungs. Fortunately, they can be treated with bronchodilators, misted medications that I've collectively referred to as breathing treatments. He can go from agitated, desaturating, and spiking his CO2 to relaxed, stable, and asleep within 20 minutes after a breathing treatment. He gets routine breathing treatments a few times per day, but he's needed a few extra doses recently.

Fortunately, there are also lots of positives. He's down to minimal ventilator settings and only getting ten breaths per minute....he does fine with it unless he's either agitated or constricted. They've started sprinting him four times per day, for one hour each time. So far he's done well on some sprints and had to stop in the middle of others. On the aborted sprints, his constriction and agitation went away with additional breathing treatments. They've started scheduling his sprints to fall just after his scheduled treatments, and I think that will be a big help.

His feeding rate has also been significantly accelerated. They're now increasing by 3cc every 8 hours, and he's currently getting 19cc per hour. With "full feeds" at 30 per hour, he should get there within a day and a half. Hopefully his body will adjust quickly to getting so much nutrition through his digestive system and he'll be able to take advantage of the additional nutrients, antibodies, and enzymes that just can't be duplicated by a bag of yellow liquid dripping into an IV.

When we visited today, he spent a long time awake and attentive, looking at both of us pretty intently. He also kept sticking his tongue out at us, which was very cute. It made him look like he was smiling, which we haven't seen him do in months. I'm still not sure whether he was smiling at us or taunting us....I'm hoping for smiling.

Hands

Here's a quick video of Andrew's active hands. It was taken a while ago, during his feverish (and swollen) phase, but I liked the close-up. There's music to accompany the video, so make sure your speakers aren't turned up too loud.

Andrew Deets

When I arrived at the hospital, Andrew was not having a happy time. He was restless, he kept dropping his oxygen saturation, and his CO2 sensor was reading quite high (in the 90s and low 100s). He seemed to be clamping down and not breathing as he is supposed to, and his lung volumes were pretty low.

The respiratory therapist came in and gave Andrew an extra breathing treatment, which involves putting a mist of a bronchodilator (to expand his airways) in-line with his ventilator tubing. When the treatment ended a few minutes later, he was noticeably more comfortable. His volumes were better, his CO2 sensor dropped back down to normal levels, and he stopped desaturating. Most importantly, he seemed much less restless and started sleeping soundly.

I watched him for a while, satisfied myself that he was feeling much better, and headed home.

Pop Quiz

I'll give you one guess as to where I was today...here are some hints:

1) This morning the radio weatherperson said, "There's going to be a little sunshine this afternoon, and that'll be about it for the rest of the week."

2) I saw a billboard for a financial institution that suggested I "Save for a sunny day."

Yes, that's right, I spent the day in beautiful Washington state, where even the largest mountains (Mt. Rainier) can be completely obscured by clouds and visibility hovers around 200 feet.

I kid, but it wasn't too cold and the scenery was very pretty. I even got to enjoy the predicted afternoon sun, which allowed me to see the mountain in the distance.

I'll be headed to the hospital from the airport when I land (I'm currently on the tarmac at Seattle Airport), so I'll post a little more about Andrew tonight. From what I've heard, he's having a pretty good day and can't wait to see his daddy. Okay, maybe I made that last part up.

A Message from the NICU

Andrew was a little antsy today, which they eventually determined was due to a renewed fever. His temperature got pretty high for a while, but it was brought under control with some Tylenol and Motrin. After that, he was much happier. Not much else to report....ventilator weans and feed increases are continuing as expected.

To make up for the lack of info, here's a quick message from Andrew....you may have to turn your speakers up to hear him:

Sunday, Sunday, Sunday

Andrew had a pretty good day today. By this morning he was down to 12 breaths per minute from the ventilator (from 28 in two days). That seemed to be a little tiring for him, so they moved him back up to 16. Aside from the one setback, the weaning is still moving forward. By the time we left the hospital today, he was back down to 14.

He's also starting to get food again. They started with 5cc over three hours, just to prime his stomach again....then they switched to 3cc per hour on a continuous drip. They'll increase it by 1cc every 12 hours (he's already at 4). Hopefully last week's surgery will allow him to get up to "full feeds" rather quickly, without any worry about him spitting up. Though no surgery is an entirely positive process, at least I can say that my baby will never throw up on me....at least not more than he can hold in his mouth.

It's going to be a busy week, including business trips to Seattle and San Francisco. I'll be heading to the hospital directly from the airport on at least two days, and the other days are jam-packed full of additional work. I'll try to keep the information flowing, but this week's entries may be more quick updates than long informational posts.

UPDATE: We just heard from the nurse that they've weighed him for the first time since the third of October. He's now 6.52 kilograms, which roughly equates to 14 pounds, 6 ounces.

Post-Op Pics

These are more recent pictures, from after his surgery. The surgeon was able to use the same incision down his midline, so the bandages should look familiar.

One of the respiratory therapists got cute with his "mustache."

Fever Pictures

These pictures are from a while ago, but they could also serve as Andrew's Halloween pics. Let's just say that he went as a mummy.

Daylight Saving Time

Another good day for Andrew. With more aggressive weaning parameters, he's gone from 28 breaths a minute to 18 in a single day. No fever, no major problems. He was very cute and seemed to be happy while we were there today.

Unfortunately, he's also starting to lose his hair. We think it's because of the steroids....they gave him a "booster shot" before his surgery....but it's still a bit disconcerting. He essentially scraped off his left sideburn by rubbing his hand against his head, and he's got some big bare patches on the top of his head from the blankets. I'm hoping he'll rub the extra hair off his forehead while he's at it.

Saturday Morning Quickie

The fever was minor and short-lived....a little bit of Tylenol made it go away for the rest of the night. He's had a good day so far, and has been weaned even more on the ventilator...good test results all night long.

Hot for Normalcy

Andrew seems to be back to normal today. Of course, normal means a high heart rate and a bit of a fever....fortunately, it also means that he was awake and alert. I didn't get to see him until after shift change today (8pm) due to a long work day at the end of a long work week. After he was asleep the entire time I was there yesterday, it was great to see him looking at me and happy....I missed him.

He still has to deal with the infection, but I feel like he's back to his usual self and won't have much of a problem. He's on the appropriate antibiotics and is past the sedatives he was on during surgery recovery. They're starting to wean his ventilator settings again, and have placed the "wean parameters" at a reasonable level; during the past two days, it would have been almost impossible for him to reach the test results necessary to turn down the breathing rate.

I feel like I'm not writing quite as coherently as I normally do, so I'm going to do myself a favor and go to bed. It has been an incredibly long week, and I look forward to sleeping in tomorrow. I hope you all have a wonderful weekend.

Eerily Calm

Yesterday, the goal was to keep Andrew calm and relaxed. Today, he was almost too calm and relaxed. He was a bit lethargic this morning, with a very slow heart rate (normally it's too fast) and not much interest in squirming, even when he was awake. They gave him an extensive bath to wake him up and get him moving, but he didn't become much more active.

When they rolled him from one side to the other, they noticed that his tummy was red on the side that had been down....when the redness didn't disappear after a little while, they realized that it wasn't just from laying there and suspected an infection. They took blood cultures and noticed that his "band counts," which also point to blood issues, had doubled during the day...it's very clear that he has an infection.

They put him back on his antibiotics, then switched to another new antibiotic when there was no immediate improvement. They started his feedings earlier today, but have since halted them until the infection clears. It's important to get this under control before he moves forward...fortunately, everything else seems to be relatively calm while he's recovering. He was asleep the entire time I was there, and his breathing (on the vent) has been pretty stable and normal. His temperature is actually lower than normal, which can also be a sign of infection, but it's less (psychologically) scary than running a fever.

We're playing a game of sit-and-wait for now, and we have to hope that the antibiotics will be successful. Until then, he's comfortable and not in any pain. More updates as he fights this infection over the next few days....

Keeping Comfortable

The day after surgery is always a bit complicated, and today was no exception. While I was there, he was awake and comfortable, though still a little squirmy. At other times, he was a little more fussy. They're trying to keep him pain-free, which sometimes requires some additional medication. His belly is still swollen from the surgery and he's still in the warmer-bed they used to bring him back from the Operating Room. He looks like a giant, and can touch both sides of the bed at the same time.....he's probably looking forward to getting back into his big-boy crib.

It's still a little early to talk about the next steps; we'll be focused on recovery for at least a few days. For now he's doing as well as can be expected after such a difficult surgery....more news as he becomes more awake and active.