first 10 months; part 2 - OEIS

Delayed posting (from 2013)

Home Coming

April 2012 (Troy comes home)

When we brought Troy home, we had a present that we gave to Trevor that is from Troy; it was a Car's 2 jumbo jet "Everett".  This made Trevor feel special and welcoming of his new brother.

Trevor was curious and at first wondered who is this little guy and was a little protective of his territory, but eventually slowly warmed up to him.  I said to myself and also to Daisy, wait a few more weeks, and he's gonna see another baby come home.  

When Troy came home, he was fairly trained in terms of from a routine standpoint.  Having been in the NICU has its advantages, one being that he's already on a schedule.  Unlike bringing home a newborn just a few days old, where you're still trying to figure things our or get into a routine (as we recall with Trevor), Troy was on a 3 hour schedule.  eat sleep eat sleep every three hours.  Troy helped us get into a routine and prepare ourselves for the eventual home coming of Trent. 

May 2012 (Trent comes home on Mother's day 5/13)

So, the first few days (and weeks) with Trent home, it definitely took some adjusting. 
Trent had about 3 medications to take (Antibiotics, Iron, Sodium Bi-carbonate); which isn't so bad along with a bunch of ostomy supplies.  Prior to coming home, we got our refresher training on ostomy changing although I've been attempting to practice changing his bag as much as we can when he was in the NICU.  Looking back, he only needed to change his bag maybe once ever 2 to 3 days, now it's a daily change.  Trent also was in this ace bandage mermaid wrap; and would stay in it for the next 6 weeks (as I recall).  The wrap was to keep his hip align and also to prevent him from stressing out his abdomen.  It was definitely some work at each diaper change.  He was wearing XS preemie diapers; it looked like those ultra thin tiny maxi pads and it certainly can hold a lot of pee.  The XS preemie diapers was used so that it doesn't splay his legs too wide versus using the regular NB diapers.  Also, we would give him some PT (physical training) exercises doing bicycles on his legs to help stretch and flex his knees so it won't get stiff and allow some blood circulation at each change.  So a diaper change would take us roughly 15 minutes each time and we change him at least ever feed.  

That first couple of days was definitely challenging.  First the sleep deprivation x's 2.  I recall when Trevor came home, we could take turns waking up and tend to him.  But with two babies, they would either wake up simultaneously or wake up back to back and we'd be zombies.  We were literally just getting no more then an hour or two of sleep each night.  There'd be times where both of us would be up rocking both boys at the same time.  

First pediatrician visit (5/16)

Key Dates:
5/21 - First follow-up visit with surgeons after going home
5/23 - 2nd follow-up visit

June 2012

6/7 - Trent blood test (to check for anemic)
6/8 - Boy's 2 month check-up
6/17 - Father's day
6/22 - Blood draw (Had to draw blood several times, due to inconsistent results)
6/25 - Urologist visit

July 2012

7/6 - Boy's 3 month check-up with pediatrician; noticed hernia
7/11 - Renal & Hip Ultrasounds
7/23 - Ultra sound reviews; Surgeon's please with the Renal Ultrasound, Hip ultrasounds confirms Trent has a mild case of Hip Dysplatia on his right hip.  Left Hip is ok
7/20 - Blood test for GI; reduced XX medication

Was supposed to have Spinal Cord MRI this month, but was canceled due to flooding

August 2012

8/3 - Boy's 4 month check-up

8/7 - 8/8 - Spinal Cord MRI @ Lucile Packard; overnight stay

8/13 - Initial MRI evaluation with Surgeon; referred to Neurosurgeon

8/27 - Hip X-Ray; Orthopedic Surgeon evaulation of hip and foot

GI Dr Visit; most recent blood test confirmed Trent's sodium content is stable and he is allowed to stopped taking the Sodium Bi medication

September 2012

Visit with the Neurosurgeon @ Lucile Packard Children Hospital to review Trent's Spinal Cord MRI; Confirms tethered cord, but appears to be mild with fatty tissue; result in scheduling Spinal Cord surgery and postponement of hernia surgery

Went out on a rare outing to a friend's baby shower and took the boy's outdoors

October 2012

10/12 - Boy's 6 month check-up; recieves all immunization and flu shot
10/19 - Spinal Cord surgery @ Lucile Packard Children Hospital

Also watching the SF Giants in the play-offs against the St. Louis Cardinals Game 6 and a dramatic win; we eventually went on to winning the 2nd world series

November 2012

Uncle Kirby (my brother) comes visits and meets the twins

December 2012

No activity

January 2013

Cousin Lorelai baby sits

February 2013

Child development assesment

July 2013

Trent and Troy both starts learning to walk...

The past few months of 2013

So it has been quite a while since my last post.  Been super busy with everything and with the boys.  Ranging from both boys being sick (from diarrhea to bad colds) to the busy holidays and finally a busy month with multiple appointments.

Where do I start, I guess i can start with  stuff occurring in the past months based on major events all in this one catch-up post.  Also want to mention, that the boys including Trent are now fully mobile.  Trent is following everything that Troy is doing including climbing the couch and onto the table and switching on and off the lights.  An even bigger challenge to keep up with these two

Sept '13
September was a relatively quiet month with the exception of a few stomach bugs and diarrhea.  But it has occurred several times that we've come to learn to address it.  Although each time it occurs, we get scared.  But mainly treating him with lots and lots of pedialyte and water.  Trent also learned to siphon water from his syringes.

October '13
October was a bit more eventful.  The boys had their 18 month check-up, traveled for the first time (went down to southern California and visited Disneyland, and dressed up for Halloween and actually got to do some trick-o-treating.

Disneyland, lets just say, it was definitely a logistic challenge to travel.  The van was packed to the fullest, Trent's pump plugged in to the car's 120v power outlet, and driving in the middle of the night so the boys stay asleep through the drive and avoid any crying and whining. All well worth it.

For Halloween, the boys were pirates (like Jake and the neverland pirates).  Big brother Trevor was dressed as a fire fighter.

November

Thanksgiving was very low key; just had turkey with the family and snuggled together and stayed home (watched football). For Trent, he had one surgical procedure performed.  This was to determine whether he needed any orthopedic intervention or not on his hips.  Medically known, OEIS babies typically also have issues related with orthopedics (Hip, Spine, club foot etc).  Trent has a mild case of hip dysplasia at birth and he was wrapped in a mummy wrap for about three months with the intent of re-aligning them.  Trent also have a condition called ectrodactyly on one foot (where he's missing some toes).  It is the Hip dysplasia that is what's being evaluated.  Since birth, Trent's hip was offline and was then re-aligned.  We're now to see if it is indeed aligned and also how his hip socket has developed.  So Trent had a hip scope procedure performed under anesthesia.  Most of the time this condition would require either body cast, traction or other orthopedic intervention and most of the time OEIS babies requires this.  Fortunately for Trent, he passed with flying colors.  His hip was lined up well, his hip socket was slowly rounding into the socket (although not fully); and most important of all, Trent's displaying signs of little ill effects with his hip as he's demonstrating he's able to walk, run, and climb with little issue.  We (and the Dr) think it may be attributed to Trent having a twin which encourages competition and the two wanting to do everything each other does (including physical activities).  So Trent does not need any braces or casting (Thank you God).  Having noted this, Trent is now cleared for his next major surgery, his epispadius repair surgery (likely in the spring of 2014).

December

December was mildly busy, but we kept most of our Christmas shopping to be online.  There was just little time to do so and logistically, it was challenging, if we go out, we have to take all three boys with us.  That's a challenge in itself with just the two of us.  We took a new kids photo for the Christmas cards, and it definitely took a look a effort (trying to get three kids to look).  

This was also the first time Trent and Troy was able to actually enjoy Christmas, opening their gifts (more like shredding wrapping paper) and playing with the boxes rather than the toys.  

Towards the end of December, Trent had a visit with his urologist (Dr. Kennedy), it has been several months since he's seen him. I guess its not a bad thing, less visits equals Trent's doing well.  Dr. Kennedy was please with Trent's progress.  He now feels that Trent would be ready for his epispadius surgery.  But not until a few evaluation procedures are done (e.g. a bladder scope and urethra evaluation).  That will be sometime February; actually he's scheduled next week, February 6th.  

So aside from the above, the past few months was although challenging, relatively manageable.  I guess we can say, we survived.  Many tell us they don't know how we handle three kids let alone Trent's special needs, but I guess as human beings, we adapt and adjust.

Thanks

Gaining weight; update since the NG tube

(This post was supposed to have been posted in August '13)

So its been several months since my last post.  These post are intended to keep track of Trent's progress and also his daily, weekly or monthly activities and milestones, but been quite busy lately and so lapsed several months.

Since the last post, (late April), Trent has been doing remarkably well with his feeding tube.  He's now at 15lbs 3 oz (gaining rougly a couple of grams a day).  But he's still not gaining enough weight as liked.  Nonetheless, he's gaining weight and that is key.

So for the next few months, it will be relatively uneventful.  Most appointments will be GI follow-ups every 2 to 3 weeks.  Trent also has to get blood drawn for monthly monitoring of his liver contents and other stuff.  Speaking of blood draw, he's doing quite well, before he would whine, now he just stares at the phlebotomist (specialist in blood drawing) and smiles while they take his blood.  On the other hand, his twin brother would whine, and literally cry at the top of his lungs when he gets stabbed with the needle.

So far so good.  A few major appointment comes up in November (Hip evaluation) with Orthopedic Surgery

Will update more later

Recent GI check-up..... (delayed posting)

POSTING of this blog that was left on draft mode (back in Mid May)

So back on May 3, Trent had his GI check-up after his two week observation from the first check-up.  Results are mixed.  Guess I'll start with the positive stuff.

In the past two weeks after his first GI check-up where he was just 11lbs 13 oz, we've been dilegently offering and feeding Trent his three solid feeds a day to supplement his lack of interest for milk.  So he would start his day with maybe 2 to 3 oz of milk in the early morning then follow by rice cereal for brunch, baby food or oatmeal in the afternoon and baby dinner in the early evening.  And if time permits we'll squeeze in a yogurt in the evening and some milk before bed time.  This seems like a lot, but in total its about 600 calories.  Overall, he's showing great interest in eating his baby food.  Thats a plus, because we want him to pig out.  The target was for him to consume at least 600 calories a day at a min, the more the better.  This was calculated by figuring out what 23 oz of milk (he should be taking) equates to in terms of calories.  Since he's only taking roughly no more the 12-15 oz of milk, the solid feeds is to make up the remaining calories.  To give you a comparison, Troy easily downs 5 to 6 oz of milk each feed (and can still take in some baby food).  And Troy would drink his milk roughly 6 to 7 times a day (every three hours).  At 22 cal/oz thats roughly about 110 to 132 calories per bottle.  So Troy takes in roughly 660 to 924 calories a day.  Trent on the other hand takes in about 550 to 650 calories.  So the issue is Trent's consumption in terms of "volume" is what's causing him to not gain weight.  Its just not enough.

So the positive news was that Trent gain about 4 ounces in the two week observation and weight in at 12lbs 1oz on his last check-up; he should have gained closer to 6 ounces though during the period.   Unfortunately, this gain is NOT sufficient enough, his GI doctor was not all that pleased.  It is also becoming more evident that Trent is leaning towards need a feeding tube.  Whether its a NG (nasal) or a G (in the stomach) tube.  The concern is if he's not gaining weight, it would impede on his development.   Fast forwarding another two weeks, he had a visit with his pediatrician and he hasn't gained weight.  With this, his pediatrician has recommended that we go forward with a feeding tube for Trent.

So today, Trent was admitted to the hospital; he will be getting a NG tube and we'll be learning the ropes of this feeding method.  While in the process, the docs took some basic vitals and checked out his electrolytes and learned that he has below normal sodium content.  What this means is he's going to have to take some supplements to offset that.  Likely he would need to do this for a while until he's able to eat more sodium rich foods (like french fries, chips =P).

So what originally was supposed to be a quick 3 day stay turned out to be a 6 day stay at the hospital.    The first few days was primarily to track his sodium levels to see if it goes back up with the sodium supplements and it did and issue solved, and now we can finally begin the tube feeding process.  Tube feeding did not begin until day 3 of the stay.  During the past 3 days, it was a lot of blood draw and heel stick, poor guy had to get stabbed so many times.  These next few days was also a challenge.  The challenge wasn't the feeding, but keeping Trent from pulling his tube out.  In 24 hours, I went from knowing nothing about tube feeding to having put back in his feeding tube through his nasal passage 3-4 times already.  It probably is a good thing as I'll have to be the one putting the tube in when we're home and was good to get some training and medical oversight on proper techniques.  Eventually, Trent settled in and got accustomed to the tube in his nose.  What bothered him the most is the taping, we're using some duaderm (prevents skin irritation) and tagederm tape to hold it down.

Finally after three days of observation, the doctors are satisfied with Trent's tolerance with the tube and we were ready to go home.  In just this week alone, he gained about 1/2 lbs (from 12lbs 1oz to closer to 12lbs 10 oz.)  Thats some serious weight gain in such a short time, but it was also attributed to all the fluids he got to re-hydrate him and the sodium supplements where the body thinks it doesn't have enough sodium and thus holding on to the fluids.  It will be expected that he'll lose some of that water weight once his kidneys realize he's got enough sodium and won't need to retain as much fluid.

So we came home that Saturday 5/25

Upcoming Surgeries

So yesterday (4/22), Trent went in for several appointments, (1) Orthopedic, (2) Urology and (3) general Surgery.  It was definitely a hectic day.  Aside from the visit, he also had X-ray on his hip, and Ultrasound on his kidneys.  Couple this with a last second visit for his twin Brother on a bad cough with a pediatrician.  All in all I'd say it was a good day with positive comments from all his doctors.

His Orthopedic surgeon was very please on how Trent's hip socket has actually improved rather than get worse.  We think its attributed with all his physical activities he's been doing to mimic his twin brother (crawling, trying to stand and climbing over stuff).  His orthopedic surgeon compared his xray from when Trent was 6 months and 1 year and it actually showed improvement, his hip socket was actually forming relatively well.  Although not the normal development, it was considerably better and favorable.  On the other hand it WILL still require surgery to completely correct and thus orthopedic surgery can be scheduled for as soon as when Trent turns 17 months old.  This surgery will entail the forming and rounding of his hip socket and re-positioning it followed by six weeks of being in a cast (this will suck).

Shortly after his ortho visit, he went in for his ultrasound of his kidneys, and a visit with his Urologist Dr. Kennedy (of LPCH).  Dr. Kennedy was please with how his kidneys are doing and also said it is growing quite nicely.  He emphasize how important this is because children with bladder exstrophy tends to need to pay closer attention to their kidneys.   With this news, Trent is now one step closer to his epispadius surgery.  Dr. Kennedy does want to perform a visual scope of his bladder (putting a camera through his urethra and checking to ensure all is well).  If this goes well, he will be ready for the surgery sometime this summer (July/August).

So now is the scheduling dilemma,  The epispadius surgery requires a 6 month recovery and cannot include any other procedures.  So this would put the recovery completion at Dec/Jan.  And thus the hip surgery cannot occur until next year.  The hip surgery cannot occur until Trent is at 17 months of age at the earliest and so would also push the epispadius surgery out to next spring as well.

We will inquire for a medical opinion, but will pursue the epispadius surgery as a priority.  It will facilitate him being in cast for 6 weeks better than having the hip surgery first and things going the other way.

On a side note, we also saw his general surgeon for a general visit and status on the baby steps to evaluating if Trent would be a candidate for a "pull thru".  He'll have a MRI first on his lower abdominal region and buttocks area to check for muscles and reflex.

Gaining some weight or else NG/G tube?

Its been a busy past few weeks and I haven't wrote much since the last blog.  Also still working on part II of the 1st year write-up.  

So, this past Wednesday (4/17) Trent went in for his GI and nutritionist check-up.  His Doctor was not pleased at all with his weight gain.  From the last check-up and now, Trent has only gained about 3.5 oz at 11 lbs 13.5oz.  That last check up was about 5 weeks ago.  Normally, a baby should be gaining roughly 1 oz a day; and had he reached this goal, Trent should at least be 13 lbs at the very least.   His Twin brother Troy weighs in at 16lbs 14oz for comparison measure.  Trent does have a fairly decent oral appetite, no vomiting or anything like that.  But Trent is only able to take in about 3-4 oz of milk per feed (for comparison, Troy takes about 5-6 oz a feed).  Trent's goal is 600 calories a day, and at 27 cal/oz of formula which equates to about 23 oz a day and at about 5 milk feeds a day (every three hours), that means he needs to consume about 4.5 oz each milk feed.   We're obviously not at the 4.5 oz a feed.  

So his GI doctor is requesting a stool sample test to see if he's absorbing the nutrients.  She is also throwing out possible next steps if Trent doesn't show signs of improvement on his next visit in two weeks of his weight.  Some next possible step she mentioned is a NG Tube (Nasogastric intubation) a tube through the nasal passage way down to his tummy and feeding him during the evenings.  I of course would prefer that he not be on the tube.  I have heard good things about the NG tube (short term), but if Trent goes on it, it'll be long term.  The NG tube does definitely help with weight gain as you're force feeding.    But drawbacks I've heard is vomiting, gagging and possible affects to the vocal cords and affecting his eating by mouth since now there's gonna be a tube in there.  

So the next couple of weeks, we will increase his "solid" feeds (from two feeds to three) to offset the smaller volume milk feeds and also fortify all his feeds including his middle of the night feeds despite us being in zombie mode.  Every calorie is going to count.    We're also hoping that his stool sample doesn't indicate anything abnormal.  

Shortly after our visit, Trent all of a sudden developed a much better appetite.  He's been able to eat all his rice cereal and his baby puree foods.  We're selecting the high calorie ones.  Since Trent will only consume the same amount in volume, need to trick him to get more calories with the same amount.    Trent seems to like his chicken and beef baby puree foods, I'm guessing he likes the salty-ness.  I've read that OEIS babies tends to lack sodium and have a taste buds for salty stuff.  

So far, Trent's been able to take in about 400 calories in milk and 200+ calories in solid feeds to get 600 calories.  I'm praying that the calories is being transformed into weight gain.  As the engineer I am, i'm tracking his every calorie in a spreadsheet to ensure he stays on track.  

So far, the past few days after the visit, We were able to get Trent to take in about 600 calories.  And some feeds, he's even able to take in close to 4 oz of milk (that's a really good single feed).   He seems to really like his baby puree Beef and spinach, Chicken brown rice type feeds more so then the fruity sweet ones.  Also his rice cereal has been pretty good up from 2-3 table spoon to 3-4 table spoon.  The one thing I learn that may be contributing to his better eating habits is methodology, I have to thank my mom for giving us some pointers and also encouraging us to be more patient and not give up on his feeds at the first sign of refusal but to try to persuade him to eat a little more after he stops. And so far, it's working, able to get Trent to take in another 20-30 ml (or 1oz) and putting in some fruity puree stuff with his dull tasting rice cereal.  

So please Pray for Trent that he shows signs of weight gain.  Our target is for him to his 12lbs 11 oz by his next GI visit.  

Thanks

Stomach Bug?

So, this week, had a scare.  It started out as a typical Friday, and I am home with the boys.  Suddenly Trent started to vomit his feeds back up.  At first, it was his breakfast milk that my mother in law fed him while I took Trevor to day care.  Then when I fed him his breakfast rice cereal, that came back up about 30 minutes later.  All of it.  It erupted like a volcano; but it came up as if it was still quite fresh from just eating it.  I tried one more time with just a small feed of milk and that came up.  His poop was also very runny, like diarrhea instead of the pasty texture.  So I started to worry, and calls Trent Pediatrician.  I was by myself today, my parents just stepped out and so, I was left with the option of taking both boys with me by myself to see the doc.  On the positive side, Trent did not have a fever, he was not overly fussy nor did he lose his appetite.  Actually he was hungry and wanted his feed but not know what's causing the vomiting, I limited his feed.  

So at the doctor's office, he checked Trent out, he said, he's responsive, he's not fussy, and listened to his internals and perform some checks on his abdomen area said he didn't feel any obstruction (or obvious blockages).  And so this leads to either a typical stomach bug or something worse.  For the time being, it will be a wait and see.  We'll give him pedialyte and see how he responds to that and slowly re-introduce his feeds starting with breast milk.    If his symptoms gets worse, the doc said we'll have to admit him in for IV's and hydration.  

So, that first night was extra tough, Trent was extremely fussy, not because of the vomiting, but  because he was hungry.  He see's the bottle reaches for it.  He instantly calms down when we stick the bottle in his mouth.  But each feed, we would only give him 1oz (30ml) to feed as we learned, that is the amount he can hold down.  Earlier trial and error feeds resulted in him vomiting his milk back up (60ml's).  He wake at 1am, then at 3am, and 5 am.  Finally in the morning, around 6:30 we gave him a bigger 2oz feed and he was happy and felt the full-ness satisfaction and finally took a nice nap; he did have a small vomit, although it was less traumatic and was more like a big spit-up instead.  The rest of the mornings, we give him his feeds at 1.5 hour intervals to keep him satisfied.  We also put in a rice cereal feed to see how he responded to that and how his poop is as his doctor was going to call in and check on his progress.  Fortunately, he poop was not as runny but milky and he was holding down his feeds.  We would hold him for about 30-40 minutes at a time to ensure he's upright and not agitated that would cause him to vomit.  Boy we were tired.  

His doc calls and was pleased to hear how he's doing and advised us to continue our current path; smaller feeds at quicker duration.  As the day goes by, Trent seems to be getting better.  We gave him some baby puree feeds (peas and spinach)l nice and green.  He ate it with great pleasure and held it down.  A few hours later, his poop came out nice and "mushy", we were super happy.  Its a sign that he's getting better and that it may have been a stomach bug.  

Here is the TWIST just as Trent was ramping his feed up, Troy all of a sudden threw up his entire lunch feed.  Then it struck us, putting one and two together; we have recently switch Trent from breast milk into formula in hopes of getting him more calories.  And the breast milk was then given to his twin brother Troy.  Since Daisy cannot cold turkey stop pumping milk, it was to be a gradual slow down.    Well, with the vomiting, we decided to switch it back, and give Trent the Breast milk and give Troy the formula, or give Troy the remaining unfinished formula from the bottle that Trent has not yet finished.  We were using ready feed.  And barely a day of Troy taking Trent's formula, he too vomited and this triggered a theory. That it must be a bad bottle of milk.  

Although not fully confirmed, we felt confident it was the milk.  

Trent is now better, he is able to take his feeds and no more vomiting.  His solid feeds hasn't been back to his norm yet, but we're confident it'll get back to where he left off.