Friday, September 30, 2011

Reaching Mount Olympus

At the outset of every journey, the only certainty is the point of departure.

The destination may or may not be specified, but even when specified, it is by no means certain. And, the odyssey, between departure and destination, is the most uncertain of all.

My odyssey began 41 weeks ago as a single cell. The planned journey would have my cells multiply, rather uneventfully, for 9 months, while my mother and father went about their normal business. It was anticipated that I would arrive, ready for life, at the Queen of the Valley Hospital on September 23, 2011.

Alas, fate had a different plan.

I started out life with a twin. But, my twin was not meant for this world, and as such, it demised within 7 weeks. During my twin’s demise, the womb that I was growing in became a hostile place, but since I survived the tumult, Mama and Daddy decided that I must be Hercules.  That would turn out to be a good thing, because I would need great strength to survive the next 7 months.

Mama did not know it at first, but she has what the doctor’s call a bicornate uterus. A bicornate uterus is a uterus with essentially two cavities, which means that the space that I had to grow in was about half that of a typical uterus. Furthermore, I had to contort my body in perplexing ways to navigate my dumbbell shaped home.

After 6 more weeks, when Mama was about 13 weeks pregnant, I was getting more comfortable and skilled at maneuvering in my womb when all hell broke lose.

Overnight, Mama’s white blood cell count shot through the roof; it went from a standard value of 8 to over 30. Simultaneously, she experienced excruciating pain in her abdomen; furthermore, my father was in London at the time and it took him two days to get home, adding to everybody’s anxiety. Mother was so tough that she refused to take even Tylenol as she was worried about what the drugs might do to me in utero.

After two days of intense agony, she went to the hospital and had an ultrasound of her abdomen, which revealed a very large gall stone. It was decided that she undergo out-patient surgery to remove her gallbladder. As you can imagine, the anxiety, inside and outside, was intense as even simple surgeries become more risky when the patient is pregnant.

Alas, the surgery would not be simple.

When the surgeon (Dr. Loftus) was performing the laparoscopic procedure, he found a large and unidentifiable mass in her intestine. He consulted Daddy, while Mama was still under anesthesia and on the operating table, and they decided to remove the mass completely--without waking up Mama.

As such, the surgeon switched to an open abdominal surgery-which means that they made a large cut  in her abdomen to find and remove the unknown mass. My presence made that procedure far more challenging because the outer wall of my home would be exposed.

The great news was that the surgeon performed brilliantly and the mass turned out to be a non-cancerous abscess that was caused by the perforation of Mama’s intestine. That explained her very high white blood count.

What started out as a simple 1 hour out-patient procedure turned into a 4 hour surgery that required about 2 weeks of recovery time in the hospital with a tube in her nose, and not being allowed to eat anything, and another 4 weeks at home in bed. Furthermore, we learned the scary fact that Mama’s system had become life-threateningly septic, meaning that she needed a barrage of  seven serious antibiotics to fight off the systemic infection.

During this hospital stay, Mama received wonderful thoughts from dozens of family and friends; those thoughts brightened her spirits and helped her face the darkness with courage. After two weeks of brutal pain, during which time Mama fought like the Mother of Hercules, she recovered sufficiently so that she could go home and continue her rehabilitation there.

Throughout this drama, I tried hard to stay strong and carry on inside my bicornate home. Mama had been given a deluge of powerful drugs, such as Fentanyl, Dilaudid, and Propofol; those drugs gave me a mild buzz, but I was, surprisingly, able to keep a solid hold on reality throughout, which helped me survive.

After several weeks recovering at home, Mama and Daddy thought that they had seen the worst, and that they would be able to enjoy a normal pregnancy for the next 23 weeks.

They were wrong.

At week 20, the combination of the invasive surgery, the bicornate uterus, and the previous deluge of drugs, resulted in mom’s cervix dilating. That was very bad.

At 20 weeks old, I would not have been able to survive outside the womb. So, Mama and Daddy knew that they had to do whatever they could to keep me inside. Their first move was for Mama to have an emergent cerclage procedure-which means that a surgeon stitched Mom’s cervix closed. So for the 3rd time, Mom was under anesthesia and spent time in the hospital...I began to think that normal adults spend about 50% of their time as hospital patients.

The cerclage was well performed, and Mom and Dad headed back to Mt. Olympus; but, Mom was under strict bed-rest orders. That meant that Mama had to stay in bed all day, every day, until I was born. Mama and Daddy hoped that I would stay put for another 17 - 20 weeks, but I had different ideas.

After everything that I had survived in utero, I started to think that I was ready to take on the world. So, I started to plan my grand entrance.

For the next 4-weeks, Mama was on bed-rest at home. That meant that Daddy did it all; he worked full time running his company; after work he would cook, clean-up, and help Mama get from couch to the bed. They had a lot of help from Grammie & Grandpa, who were absolutely wonderful.  Their presence allowed Daddy to go to work without worrying so much about Mama.  Mama even got readmitted to the hospital during this time for a few days due to a partial small bowel obstruction.  Those 4 weeks were rough on Mama & Daddy, so, I decided it was time to enter the world.

I started to force my way out and into the world again at the ripe old age of 25 weeks. But, Mama and Daddy had different ideas. They hurried to the hospital.  At the hospital, the doctors went into overdrive to try to keep me from making my grand entrance so soon. Mama was admitted as a patient and immediately put on a rich cocktail of IV tocolytics meant to slow her contractions that she had been having every 10 minutes since 16 weeks gestation. The drugs included magnesium sulfate, indocin, and nifedipine.

The first regimens of these drugs did slow my advance; and the next several weeks were challenging for Mama, Daddy, and me. Mama was now living in her 10x15 hospital room 24 hours a day, while Daddy would sleep at the hospital and commute to Berkeley or New York or Houston for work.

During this fourth stay in the hospital, Mama and Daddy had an outpouring of love and support from family and friends. Indeed, many of their friends brought dinner to the hospital and spent hours with them. Those visits lifted Mama’s spirits and gave her the courage to stay strong, even after she was diagnosed with Gestational Diabetes the week before I was born.

After a 5 week battle between me, Hercules, and all the tools and technology of modern medicine, ancient strength triumphed over contemporary brains. As such, on July 7th 2011, I decided not to wait any longer. I had, after all, fully conquered the womb, and as such, it was time for the next of my 12 labors.

I entered the world after 29 weeks in the womb, 11 weeks early and 30 miles to the south of the planned  destination at John Muir Hospital in Walnut Creek, CA. But my odyssey was far from over.

I entered the world at the fighting weight of 2 lbs 9 ounces and ready to take on my second labor. It turned out, however, that the doctors refused to let me leave the hospital because I was so small; I couldn’t breath on my own; and I couldn’t eat on my own. As such, immediately after birth, I was transferred to the Neonatal Intensive Care Unit (NICU) and put into a $100,000 humidity and temperature controlled incubator.

The NICU is an intense place. To enter the NICU from the outside, one must pass two guards and a locked door. Inside, the nurses, who are exceptionally well trained and hard working, run the show. All its captives’ vital signs are constantly monitored at the central command station, and one of the doctors is a 6ft 4 inch German who barks orders with the culturally appropriate authority.

My NICU team set goals for my development. The first goal was to breath without the positive pressure mask. I accomplished that goal in 3 days...no sweat. The nurses were impressed, but I reminded them that I am Hercules.

Next, I was supposed to stop losing weight and start gaining weight. Over the first week, my weight dropped to 2 lb 4 ounces, but then it started to climb. My the end of July, I was nearly 4 lbs, and by the end of August, I was nearly 7 lbs. Again, my nurses were impressed.

In August, although I had been breathing without positive pressure for over a month, I was still on a passive flow nasal cannula.  My oxygen saturation levels were frequently dropping from the high 90’s to the mid 70’s. That was because a valve, called the ductus arteriosus, that controls blood to and from my lungs and heart was stuck open. That little valve caused a fair bit of anxiety. Week after week, the doctors monitored the valve, and week after week, there was no change. I also had “preemie lungs”…meaning my lungs were not fully developed when I was born.

Between my preemie lungs and the ductus arteriosis, I had a hard time getting off the last bit of my oxygen;  and the lack of progress meant that my feeding progression had fallen behind.

For the first week, I was being sustained by sugar and protein through my IVs. Then, the doctors put a nasal gastric (NG) tub down my throat so that I could digest some of the great milk that the Mother of Hercules was producing. After about 3 weeks of being fed exclusively through the NG tube, I started to drink a bit of Mama’s milk through a bottle. But, since my respiratory system was still not quite up to par, the rate that at which I drank her milk did not increase very fast.

After about 8 weeks of this struggle, my oxygen levels, seemingly overnight, improved dramatically. The little valve was getting smaller on the exams, and my lungs were finally maturing, to the great relief of Mama, Daddy, and my Doctors.

At the beginning of September, with my O2 levels steady, I became determined to escape the NICU and join Mother and Father on Mt. Olympus. Getting out meant eating on my own. So, I focused.

At each feeding, my objective was to consume as much milk as possible through the bottle--as opposed to through the tube. I started to make great progress, but it is exhausting work…akin to running a Marathon each time.  After about three weeks, I had gotten up to drinking about half of my food through the bottle.

At that point, the Mother of Hercules did something unexpected; she told the hospital that she was taking me to Mt. Olympus, even with the NG tube still in my nose. Everybody was surprised, but they sensed her determination. My feeding continued to progress, but regardless, one week after Mother stated her intention, we were packing up my hospital room.  She & Daddy were confident that I could continue my feeding progress at home…and frankly they were tired of driving an hour each way to the hospital every day to come see me. 

Packing up the room that had, effectively, been my cell for 3 months was emotional. In a weird way I had come to like the place. It was, after all, the only home outside of the womb that I had ever had; I had also become very fond of the caring and skilled nurses who took care of me. While leaving that room for the last time, I had a profound realization that dozens of mortals had been devoted to helping me get into the world safely. Even someone with godlike strength needs a community and needs others.

And so, Zeus and Alcmene put me in their chariot, and we traveled north to Mt. Olympus.

The point of departure was certain; the planned destination was wrong; the timing was wrong; but the journey was profound. I almost didn’t survive; my twin didn’t survive; and Mother was admitted to the hospital on 4 different occasions--once for a life threatening issue. The odyssey was more challenging than Mama and Daddy could have imagined at its onset, but they stayed strong and carried on; their fortitude was the first lesson that they taught me.

It might have been nice for Mama to have had a typical pregnancy; that certainly would have been easier. But, out of the hottest fires come the strongest steels, and as Dad’s hero often said, “A life without strife is a life not lived.”

The journey is now a part of our fabric; it made us into a family.

It made me into Hercules.





This is me during my car seat challenge test.  This car seat thing is ridiculous!  But, I passed my test & didn't have any desats or bradycardias.


                               My going home outfit courtesy of the Graubarts!






                                 Mama & Daddy busting me out of the NICU!


                                            Riding in my chariot for the first time.


                                                My front porch!  Mount Olympus is awesome!



                                               Hanging out with Daddy


                                 The MamaRoo is Amazing!  I particularly like the "car ride" option




Tummy time on my activity blanket & snoozing on the Boppy Pillow

     The two kitty cats were so intrigued with me...they kept meowing the whole day!  But, now they love me and we are all good buddies!

Wednesday, September 28, 2011

Adventures with the babysitters

Dictated to Auntie Cara Richoux!

9.24.2011    Call of the Wild

 Today I am officially a term baby!  Yesterday was my due date!  Can you imagine if my mamma had to give birth to me now? I am a far cry from 2 pounds! As with most important people, I had my own ideas and agenda, so I determined my own due date. Today I am a very healthy 8 pounds, 12 ounces, and I am ready to bust out of this NICU!

  My parents had to jet over to LA for my uncle’s wedding this weekend, and they decided that I am now big enough to be left with a babysitter!  My NICU nurses are wonderful, but my mamma is quite particular, and wasn’t quite comfortable leaving me for the day unless she could be sure that some reliable babysitters were close at hand. She needed to be sure that I would be cuddled and loved by some familiar faces, so she left me to my very loving, capable Grandma Colton and my Auntie Cara. This may have been a mistake….

 While Grandma Colton was here, we cuddled, ate, and slept. Auntie Cara came shortly after my noon feeding, and I was sound asleep. Or so it seemed. As she lifted me from my crib… sniff, sniff… Declan?!  My nurse had instructed Aunt Cara that it is really important for protein synthesis that I be allowed to get some good REM cycles in after feeding, so Aunt Cara decided that the stinkiness that she smelled was a passing breeze (hopefully!),  and she cuddled me anyway. I slept soundly for the next 1 and ½ hours, but my tummy sure didn’t sleep! Guuurrrgle, gurgggglllee, gurrrgglllllleeeeee…

  I set a record today! When I was woken from my slumber to prepare for my 3:30 feeding, the nurse had to come help Cara because when she changed my diaper, I just kept going, and going, and going, and going…4 diapers later I finally stopped so they could put on a clean diaper!  I even soiled 2 outfits! Some might say I look a *lot* like my Dad. I may have learned some other tricks from him, too! ☺

  After my nap, Aunt Cara decided that I was rested enough to begin a very important lesson. My little rested brain is like a sponge! Aunt Cara spent a lot of time thinking about what to teach me while my parents were away. There’s so much she wants to show me, but my attention span isn’t very long yet, so we needed a simple lesson to begin. What better way to start than to learn something very special that is unique to our two families ? Someday when Uncle Bill & Aunt Cara have kids, we’ll be able to find each other anywhere! Today, I learned the Call of the Wild! (i.e. the weird hippo call that Mama and Uncle Bill learned in Africa last year.)

 Observe.  The resemblance is uncanny!


 Next post coming soon...."My Arrival at Mount Olympus"

Thursday, September 22, 2011

Mama & Me


Most people say I look just like my Daddy...and I agree.  Mama and my nurses just can't believe how identical I look to Daddy, but one of our family friends just commented on how my mouth looks like Mama's.  

You decide....





Mama circa 1978

                                                                                                         Me circa 9/2011
I'm 8lbs10oz today...quite a chunky monkey!  Still working on my feeds, but I am getting better slowly!  Mama & Daddy are hoping to take me home by the end of next week.  I will miss my nurses, but I'm starting to get excited at experiencing a whole new world!  I've never been outdoors yet, so I'm looking forward to seeing the sunshine (with appropriate sunblock applied), and feeling the wind on my face!

Saturday, September 17, 2011

We got Inked!

Mama & Daddy came to visit me one day sporting some new ink!  Mama came up with the idea to get my name tattooed on her side, and designed a very cool one with my first name in Celtic and my middle name in Greek. Daddy has been talking about getting a tattoo of the Second Law of thermodynamics for years, so when Mama told him that she was going to get one, he felt like he had to put his money where his mouth is!  Indeed, Daddy liked Mama's idea so much, that he decided to get the exact same tattoo in addition to the one on the Second Law of thermodynamics.  Daddy has already been teaching me the Second Law - it doesn't seem too complicated to me yet, so I'm not sure why it's this scary looking equation!  I don't think I'll ever forget it since Daddy has it forever on his arm.  I'm glad that I was at least equal importance to Daddy as his passion for the Second Law.   Mama & Daddy better hope that they don't give me too many brothers & sisters someday, because it wouldn't be cool to have my name tattooed and then not do the same for them. 

My nurses & Mama & Daddy had a little fun with me at the hospital and put a fake tattoo on my chest so I can look just like Daddy.  (Don't worry, it came off the next day!)




Oh...I'm 8 pounds 2 ounces today.  I was officially put on a diet since I am getting too fat too quickly!  So, they cut down a bit on my volume of breastmilk.  I'm still working on the feeding thing, but it is still so much work to finish a full bottle!

Thursday, September 15, 2011

House Invasion

Hi Everyone -

First, I would like to apologize for taking so long to get another blog post up.  Mama was really busy this week, and though I am incredibly intelligent, I still need her help as a scribe!

This week was Mama's ENT conference in San Francisco.  Though she didn't really go to the meeting during the day because she spent the days with me, she had obligations every night.  She says they were for work, but I know she was just really having fun with her friends from Boston & our family!
She even went to a SF Giants game & brought me back some cool gear!

Daddy's side of the family has other ENT doctors, just like Mama...including Granddad, Aunt Kristi, and Uncle Steve.  So, the whole House family was in town and they all had dinner on Sunday.  I was the talk of the town!  Uncle Hans (AKA Uncle Poseidon) came to see me on Sunday which was awesome!  He looks a lot like Daddy & he has a little girl named Sophie, my cousin!  I can't wait to meet her someday, but she couldn't come visit me in the NICU this week.   Granddad, Boppy & Uncle Steve also visited me this week...here are some photos!  Mama couldn't stop talking about how much I look like my Granddad!  I think that's a good thing!

Aside from all the "work" that Mama had to do this week, she did spend a lot of time with me trying to help me learn to eat better.  I have to say that I still really don't like this eating nonsense!  I mean, it's ok for 1 ounce, but they want me to drink 2 ounces, and that's just a crazy amount of work!  So, I still have my feeding tube for when I fall asleep while eating.   I'm 7 pounds 14 ounces today, which the doctor thinks may be a little too fat, so they cut back on my volume of feeds a little bit.  Mama says this is good because she still wants me to get home while I still fit into my cute newborn clothes!

                          Mama & Daddy at the Giants game.  I can't wait to go with them next time!

Mama & Daddy brought me this cute outfit as a peace offering to see if it would make me eat better!  (It hasn't worked yet!  I demand more expensive bribes!)

   The House family dinner.  (From bottom left around the circle:  Cousin Sophie, Aunt Kristi, Daddy, Mama, Uncle Steve, our friend Josh Meier, Boppy, Granddad & Uncle Hans


                  Me with Boppy, Granddad & Uncle Steve (he's getting married to Aunt Beth in 10 days!)















 Me with Granddad.  I look just like him!  Even the dimple in my chin.
 
 Mama with her people from Boston!

Wednesday, September 14, 2011

Great Grammie & Uncle Ben

Mops, Pops, Great Grammie (on Mama's side) and Uncle Ben (Mama's brother) came to visit this week.  It was actually Pop's birthday, so the family got together for lunch in Walnut Creek before they came to visit me.  Great Grammie & Uncle Ben have visited before, but this was the first time that they got to hold me.  It was really cool!  We took some fun photos, and even got to take a four-generation photo with Great Grammie.  I behaved myself the whole time too.  Mama says I'm a pretty mellow baby, but I'll prove her wrong once I come home! 

                                                  Great Grammie & me in my favorite hippo outfit

                    Uncle Ben holding me.  I can't wait until Aunt Aubree & Uncle Ben give me a cousin!


                           Pops holding me!  I was so relaxed with him.  He promised to take care of me when Mama & Grammie are out shopping...since boys don't like to shop!

                                                                  Four Generations!

Tuesday, September 6, 2011

I love my beautiful nurses!

Ok, so I am a lucky lucky man!  How many guys get to have at least 5 beautiful women wait on them hand & foot 24 hours a day?  I know you all must be jealous. I am definitely living a dream right now!

Ever since the day I was born, I have had 5 "primary" nurses.  Sure, I have other nurses sometimes since my primaries occasionally have to spend time with other babies (or even their own families)...but most of the time I get the same ones.  I got to hand pick which nurses I wanted to have for my primaries, and I sure did a good job! 

My nurses love me too...not only do they feed me and wipe my bum, but they also rock me and take me for walks around the NICU to visit other babies and other nurses sometimes.  After all, one can go a bit stir crazy staying in the same room & the same crib for 9 weeks! 

They treat me so well that I'm not sure I ever want to go home.  Besides, I've never even seen this mythical place called "home", though Mama & Daddy assure me that I will like it a lot.  I'm skeptical though, since I don't know how it can get much better than it is now...and Mama told me there aren't 5 beautiful women waiting for me at home! 

Here are some photos of me & my nurses:



This is Jenny, Alyssa, and Leilani














 This is me with Corie
This is me with April - she was the very first one to take care of me!

Oh, and I'm 7 pounds 3 ounces now!   Mama can't stop rubbing my fat little belly for good luck!

Sunday, September 4, 2011

Pathway "D"

Hi Everyone!

I hit a new milestone yesterday.  I advanced to what my beautiful nurses call "Pathway D".   Pathway D is the second-to-last step in my feeding regimen.  The ultimate goal is for me to eat whatever I want, when I want it (Pathway E).  Up until now, however, I was being fed through a feeding tube every other feeding.  That way I could stay asleep during those feeds, and only wake up every 6 hours to drink from my bottle.  I love sleeping!!!  But now, on Pathway D, I have to feed through a bottle every 3 hours -- they are not using my feeding tube!  Eating on my own is totally exhausting!  I prefer to sleep and be fed.  But, Zeus (my Daddy) tells me that I cannot come home to Mt. Olympus until I feed entirely on my own.  So, I am doing my best.  While Zeus feeds me my bottles, he occasionally hits me in the back with the force of a god.  See the video below...