After we collected all our foods and got them loaded in the car, we headed into the zoo to check out the animals. Little Monkey was VERY excited about the train and wanted to ride it. We told him that maybe he and Pops could ride it later on after we checked out all the animals. This worked for a while but he did keep asking to ride it.

One of our first stops was to see the giraffes. They were quite large but very sweet. You could even feed the giraffes if you wanted to. Grammy decided that Little Monkey wanted to, so Pops paid our fee and we waited to feed the giraffe. I really wanted to touch the giraffe but the sign said that was not allowed because the giraffes don’t like it. I wonder if the giraffes really don’t like it or if it is more that the zoo doesn’t want everyone touching them or worrying about the giraffe biting a person.

Little Monkey feeding the giraffe

We continued on and took some fun pictures with the elephant sculptures. Little Monkey was a good sport and took quite a few pictures for us. This was my favorite picture from the elephants.

Little Monkey hangs from the elephant's tail.

We continued on and checked out some other animals, snakes, turtles, frogs, etc. We went in to see the birds and you could buy a cup of nectar to feed them. Grammy got us a cup and we tried to get a bird to come to us. Most of the birds we found were either already eating or sleeping. We finally found one to come and eat. He almost grabbed the whole cup from me but I held on tight. Grammy gave the cup to Little Monkey to get a bird closer to him and it worked. The only problem was that the bird did manage to grab the cup away from Little Monkey and spill all the nectar. Little Monkey still wanted to get a bird close to him, so I kept trying, even with my empty cup. I finally managed to get a bird onto Little Monkey’s arm. He was very excited about it.

Little Monkey and the bird

Overall it was a nice day and I think Little Monkey had a good time. It was nice to try some pku foods and get to take home quite a bit of pku foods for free. That night Little Monkey even had some pku animal pasta!

]]> http://kpmattingly.wordpress.com/2009/11/29/pku-zoo-day/ Sun, 29 Nov 2009 12:00:13 +0000 sunshinekmp http://kpmattingly.wordpress.com/2009/11/29/pku-zoo-day/

Over the weekend we went to Jacksonville for a PKU get together at the Jacksonville Zoo. Amazingly, even though I went to college in Jacksonville, this was the first time I have been back to the city at all since graduation day! Grammy and Pops came with Little Monkey and I. It was a nice day out and we had a nice time. We tried some new pku foods and formulas. We also talked to some other families,  the dietitian from Jacksonville and a representative from Nutricia.

Amazingly Little Monkey was willing to try some formulas, but only if the rest of us tried them too. I tried very hard not to make a bad face after drinking the formulas because there were other PKU kids at our table. Thankfully one girl told me she didn’t like the kind I tried either, so I didn’t feel so bad about it. They even had a pinata for the kids, filled with candy that they are allowed to have. Little Monkey liked trying to hit the pinata.

Pops and Little Monkey doing "cheers"

After everything was done, they gave us grocery bags and told us to fill them up. The Nutricia representative had brought a TON of food to give away. This is probably what really made the whole trip worthwhile. We ended up with all of this food to bring home free. I totaled it up when we got home and it would have cost over $150! It kind of looks like a decent amount for $150 until you realize that most of it is pasta, rice and cake mix. (Stuff that would cost you and me about $1 a box!) I am very excited about the advent calendar. Little Monkey has never had one and I had considered special ordering one for him this year, but they are just very expensive. Some families got way more than we did, but I did not want to take too much because I know Little Monkey doesn’t eat that much right now and there were families with older kids who probably go through quite a bit of food.

Lots of PKU foods to try!

A BIG thanks to Nutricia for helping support this event and providing us with all this great food to try for free! There is more to tell (and show) from our day at the zoo, but it will have to wait for another post.

You’ve been home from the hospital for 3 days and are adjusting to life with a new baby. You’re probably dealing with all of the wonderful new things that come along with being a parent: Crying, breastfeeding issues, sleepless nights, counting wet diapers and of course worried about every little thing. You’ve already had your first trip to the pediatrician and everything looks great. In fact, everything seems fine when all of a sudden you get a phone call.

“This is the Hackensack University Hospital Genetics Department. Your baby’s genetic screening came back as a positive for a possible Organic Acidemia. We need to schedule you to bring your baby in for a blood test to confirm as soon as possible.” Genetic test? Organic what? As soon as possible?  Next, or possibly before, you get a call from your pediatrician, whom you probably just met, who tries to explain what your baby has just tested positive for. Your mind is racing and if you comprehend 10% of what is being thrown at you than you are ahead of the game. You hang up the phone, still in a daze, trying to get a handle on things, now looking at the crying baby in your arms with a whole new set of worries.

I am not a geneticist, or a doctor, and of course needed more information. So who did I turn to? Who else but Dr. Google. A quick search of “Organic Acidemia” returned some of the most horrific things you’ve ever heard of. The highlights include: very rare disorders that affect a very small percentage of babies, organic deficiencies that can lead to severe physical and mental development problems and the coup de gras: Your baby may look totally fine but could be dead within a few days. Fun stuff, huh?

If you just got one of these phone calls, or know someone who has, here are some things to be aware of.

-The false positive rates for these screener tests are pretty high. In New Jersey, where we live, they test for around 30 different genetic abnormalities. A drop of blood and urine sample are taken from your baby right before they discharge you. In New Jersey they test around 110,000 babies each year, of those, roughly 3% come back as positive for one of these genetic disorders. Only about 10% of those that test as a possible positive will end up having the disorder. Let me repeat that, 90% of the time this is a false positive. These false positive rates are for New Jersey and an aggregate from all of the genetic tests they conduct, so please check with your own state for the abnormality your baby tested positive for to get the accurate false positive rates. The point is not to get too crazy before anything is confirmed.

-Each enzyme deficiency has a very specific set of symptoms to look out for as well as a very specific prognosis. Whether it’s an Organic Acidemia or a Fatty Acid Oxidation Disorder, make sure you find out exactly what your baby screened positive for. Some of these are PKU, SCAD, Maple Syrup Urine Disease and about 10,000 others. Some are very severe while some are relatively minor. The biggest problem here is that most of these symptoms are something that all babies have: lethargy, discolored stool/urine, and lack of hunger. So try not to go too nuts, just keep doing what you are doing.

-These conditions are all pretty rare. So there is very little information out there and what is out there is mostly made up of horror stories on support sites. STAY OFF THESE SITES UNTIL YOU HAVE THE CONFIRMATION TEST. Use only sites like www.aap.org, www.webmd.com, hospital websites, or medical journals like the New England Journal of Medicine. All other information, including the information provided here, should be used for information purposes only and not considered fact until confirmed by a pediatrician or pediatric geneticist.

All in all genetic testing is a very good thing. It catches things that if caught early enough can be treated or managed. While it does cause a lot of stress and worry for people who will end up being negative( 90% in fact) the ends justify the means. If you are one of the unlucky parents who have to go through this I hope this helps and you end up being, as we were, one of the many false positives. If your baby is confirmed to have one of these disorders: be thankful that testing was done, it was caught early and know that there is hope.

Some Useful Web Resources:

List of Genetic Conditions

http://ghr.nlm.nih.gov/BrowseConditions

About Newborn Screening

http://aappolicy.aappublications.org/cgi/content/full/pediatrics;118/3/1304

http://www.webmd.com/a-to-z-guides/genetics-newborn-screening

Wednesday I got up and my Mom and I spent part of the day running some errands that she needed to get to. It was good for us to get out of the house again and try and focus on some other things. My sister was taking care of Little Monkette and my Mom had talked to her about how it was going. She might have gotten more than she bargained for but she was doing well. We decided to have Amy come over to Mom and Dad’s house with Little Monkette so that they could help out with taking care of her and I could see her. I was fine with it at first but the more we talked about it, the more anxious I got about her being there. I still decided to have them come on, knowing that if it wasn’t working out, we could have them go back home.

It was nice to see her and have her be around. I didn’t have to do anything and on Wednesday, I didn’t. I didn’t hold her, feed her, anything. I just wasn’t ready to. I was just glad to see her and know that she was being cared for. My family has done a great job of making me feel as comfortable as possible with the situation while trying to ease me back into things. Wednesday I took some medication to go to sleep again and Amy and my Mom took care of Little Monkette.

Thursday I woke up and got my stuff together. Big Monkey came over from our house and picked me up. Amy was going to stay with Little Monkette. We dropped Roland off at a friends’ house and headed over to Uncle K and Aunt S’s house for a family taco lunch. Little Monkey was there waiting for us. He was excited to see us but also just as happy to watch his movie while we ate lunch. After lunch we headed to our hotel to check in and get ready for rehearsal. We also met up with Big Monkey’s Dad at the hotel. Big Monkey and I headed over to rehearsal and met up with everyone. Little Monkey was there too. He was too cute practicing walking down the aisle. Hopefully he will do as well on Sunday. Many people were asking about Little Monkette since they haven’t met her yet but we did not have her with us. I told them that we might bring her to the wedding on Sunday for a little bit so they can see her and meet her at least. It was a little tough to be at rehearsal with people asking about her because they were all congratulating us on her birth and asking if we were doing well and such. Of course we (me at least) are not doing so well, at least not as well as everyone seems to think that I should be doing. Also, one of the wedding coordinators was there and she had her son just two days before Little Monkette was born. Her son just slept the whole time but of course everyone wanted to check him out. I didn’t go check him out or anything; it was more than I wanted to focus on at the moment. After practice we went out for the rehearsal dinner at Delano’s. It was a nice place and we had a good meal.

After we finished dinner, Big Monkey and I decided to go back to my Mom and Dad’s house for a little bit to see Little Monkette. While we were there I decided that I wanted to hold her, so I took her from Amy and held her for a bit. I even changed and fed her. It did not feel natural or normal still, but I am glad that I did it. I feel like there is a bit of disassociation between her and I. Almost as if she is not my child, even though I am fully aware that she is. I know this is part of my journey with the postpartum depression and there will be a light at the end of the tunnel but right now it is still hard. After we hung out for a bit, Big Monkey and I went to the hotel for the night. It was odd to be there with no kids but it was also nice to be close by but away. This week has been a tough week and we are just taking it day by day.

At my doctor’s appointment at 37.5 weeks, the doctor told me that she expected to see the baby within the week. Of course, that did not happen. I was quite frustrated because I was more than ready to get her out! I made it to my 38 week appointment and had only dilated a little bit more. That doctor told me that he thought that I had a 50/50 chance of making it to my 39 week appointment. And wouldn’t you know it…I made it to my 39 week appointment. After trying to stimulate labor with the stripping of my membranes and doing lots of walking, the contractions stopped. And nothing happened on Thursday or Friday.

Friday afternoon my phone rang and it was a call from my doctor’s office. I was surprised that they were calling me because my next appointment wasn’t until Wednesday. On the phone was my doctor herself! She was wondering what was going on and why I hadn’t already delivered! She thought for sure that I would have been in the hospital on Wednesday night having a baby. She told me that she was on call for the weekend and she wanted me to come down to the hospital and get checked out. She said there was no promises of me being able to stay but that if I was at least five centimeters dilated I could stay and we’d have the baby. I was a little leery to pack everybody up and get Little Monkey and Roland to my sister and then us end up being sent back home.

We decided that we would take the chance and I started running around the house getting everyone packed up. Big Monkey was up at a friend’s house in our neighborhood, so I called him and let him know what was going on. He suggested I go on a walk before we headed down to the hospital in hopes that we could get some contractions going. My sister came and got Little Monkey and Roland and I took a walk around our neighborhood. I ended up at the top of the hill where Big Monkey was. He was nice enough to drive me back home. I finished packing and we both were able to take showers and head to the hospital. We stopped for some dinner (we learned this last time…eat before you go!) and then headed for the hospital.

As you can see, I haven’t posted for a few days. Needless to say that things are a little hectic and different around here. We are just trying to find our new way of life. I have been working on writing the story of what happened during Little Monkette’s birth, but it is hard to find the time to sit and type it all out. I will try and start posting it in sections so that at least you get something and it won’t be too much to read all in one sitting.

We are working on getting things figured out as to how things work with our new family of four. Yesterday we took Little Monkette to the Doctor for her checkup. She looks great and so far is doing very well. We still await the results of her PKU test though. Hopefully we will know before the end of the week.

This is actually try number three to get this post written, saved and published!!! This is crazy!

This post is to give you medical updates on both Little Monkey and Little Monkette.

Last week we got Little Monkey’s lab results back from his most recent trip to the doctor. His phe level was 6.0 (This is on the high end of the acceptable range for our clinic.). Last time his level was 6.1. The dietitian decided to reduced Little Monkey’s daily phe intake just a bit. They figure if his phe intake is that high when he is fasting for the blood test, it is likely even higher during the day when he is eating. Hopefully this change will make a difference and bring his levels back down where they have been before. Little Monkey doesn’t have to go back in until December. (If Little Monkette also has PKU, we will be visiting them again much sooner…we will have to wait and see to find out if she does.)

Earlier today I went in for my weekly check on Little Monkette. The doctor was happy that I have made it to full term; I am 37 weeks and 2 days. I did not gain any weight this week. I did dilate a little bit more though. We are now at 3 centimeters dilated and still 70% effaced. I am measuring about a week to a week and a half behind so the doctor is sending me for an ultrasound to check her size. The doctor didn’t seem too concerned that she may be small as Little Monkey was small and I am small. She may just be slowing her growth because she is running out of room. The doctor still wants to get a look at her though just to make sure that she is on track, but just small. I will be going on Friday for the ultrasound, so hopefully we will know her approximate size then. The doctor said that she expects to see Little Monkette within the week! OH MY! Time to get ready… Well I think we are mostly ready already but I do need to pack my hospital bag and probably a bag for Little Monkey. I also need to wrap Little Monkey’s gift from Little Monkette that he will get from her when he comes to meet her. Today Little Monkette’s car seat arrived; I think that is the last item we actually HAD to have to get her home from the hospital!

I just wrote a post on this….and when I hit publish…..the entire thing disappeared….it will show up again, once I rewrite it. Sorry….come back in a bit and it should be here!

If you have had a child, you know that your baby is given a variety of newborn screening tests for inherited and genetic disease.  The most common of these tests is the PKU test, which involves a heel poking and squeezing the blood into various circles on a piece of paper.  The test is then repeated at 2 weeks at the doctor’s office.  Consider the following information from the website http://www.congenitalheartdefects.com/legislation.html:

“According to the Center for Disease Control and Prevention website , “One of every 33 babies is born with a birth defect. A birth defect can affect almost any part of the body. The well being of the child depends mostly on which organ or body part is involved and how much it is affected. “

“Within 48 hours of a child’s birth, a sample of blood is obtained from a “heel stick,” and the blood is analyzed for (up to) 35 treatable diseases (depends on the state), including phenylketonuria, sickle cell disease, and hypothyroidism”.

“Each year, at least 4 million babies in the United States are tested for these diseases, and severe disorders are detected in about 3,000 newborns.” This means one of every 1,300 babies tests positive for one of these diseases .

“Many birth defects affect the heart. About 1 in every 100 babies is born with a heart defect. Heart defects make up about one-third to one-fourth of all birth defects . Some of these heart defects can be serious, and a few are very severe. In some places of the world, heart defects cause half of all deaths from birth defects in children less than 1 year of age. “

Imagine how many newborn children could be helped with a NON-INVASIVE oxygen saturation level test!“

The information is sobering and yet still, CHD’s are not screened for in newborns.  On August 21, 2009 the New York Times ran an article which included the following story:

“In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.”

The article was written by By Darshak Sanghavi, M.D., a pediatric cardiologist.  Dr. Sanghavi goes on to explain that pulse ox screening for newborns could diagnose three-quarters of the babies whose congenital heart defects were missed or could not be diagnosed otherwise and would have been sent home.  Often times these infants are not diagnosed with CHD until after it is too late, post-mortem.  Dr. Sanghavi goes on to say that pulse oximetry testing is non-invasive and hospitals are already equipped with pulse ox machines.  The cost would be similar to the cost of the PKU screening or hypothyroidism screening.  He estimates that 1 out of every 2000 babies screened would be diagnosed with a CHD and treated, thus saving lives of babies who would otherwise be sent home without being diagnosed.

It seems that medical associations, doctors and nurses alike all agree that pulse ox screening could save lives and help in missing the diagnosis before serious problems occur.  However, they also agree that more trials need to be done in order to solidify the need for the tests.  According the American Heart Association, the tests run thus far have varied from being 0%-100% accurate.  It is agreed that during the first 24 hours false negatives are more common as babies pulse ox levels vary.  After the first 24 hours however, it seems that the screening is generally very accurate.  Because of these variances and discrepancies, the American Heart Association has concluded that “Currently, CCHD is not detected in some newborns until after their hospital discharge, which results in significant morbidity and occasional mortality. Furthermore, routine pulse oximetry performed on asymptomatic newborns after 24 hours of life, but before hospital discharge, may detect CCHD. Routine pulse oximetry performed after 24 hours in hospitals that have on-site pediatric cardiovascular services incurs very low cost and risk of harm. Future studies in larger populations and across a broad range of newborn delivery systems are needed to determine whether this practice should become standard of care in the routine assessment of the neonate.”  In other words more testing is needed.  Unfortunately, many professionals have taken this to mean that the American Heart Association doesn’t feel the testing is necessary or useful.  Charles Bankhead of the website MedPage today, which is supposed to be a useful tool for medical professionals, has written an article entitled “Routine Pulse Oximetry for Newborns Not Supported”.  This article gives the erroneous assumption that because of the high rate of different outcomes of the studies already performed, the American Heart Association doesn’t support the testing, when in fact the AHA stated clearly on their website that it does support testing and would like more trials to be run so the screening of infants can be put into place.  The article on Medpagetoday.com actually goes so far as to list an action point in the article in which physicians are encouraged to “Explain to patients that the American Heart Association and American Academy of Pediatrics have concluded that a test to detect congenital heart disease in newborns should not be performed routinely.”

These statements are harmful to the future of pulse ox screening in infants.  What can we do?  Get involved!!  Contact your local congress representatives and senators and tell them you would like to see a bill that would mandate pulse ox testing in infants.  Contact the American Heart Association asking them what can be done and start a grass roots movement with a petition asking laws to be passed the mandate this life saving testing.  Very few states have any kind of legislation to support CHD screening.  Let’s save some lives and start by screening for the Number 1 birth defect, heart defects.

類似DP的題目

#include <iostream>
#include <cstring>
#define MAX 501
using namespace std;

int map[MAX][MAX];
int sum[MAX][MAX];
int main()
{
  int pointN;
  int w, h, x, y;
  while(1)
  {
    scanf(“%d”, &pointN);
    if(pointN == 0)
      break;
    scanf(“%d %d”, &w, &h);
    memset(map, 0, MAX * MAX * sizeof(int));
    for(int i=0; i<pointN; i++) {
      scanf(“%d %d”, &x, &y);
      map[y][x] = 1;
    }
    for(int i=1; i<=h; i++)
    {
      for(int j=1; j<=w; j++)
      {
        sum[i][j] = sum[i-1][j] + sum[i][j-1] – sum[i-1][j-1];
        if(map[i][j] == 1)
          sum[i][j]++;
      }
    }
    int s, t, max = 0, num;
    scanf(“%d %d”, &s, &t);
    for(int i=t; i<=h; i++)
    {
      for(int j=s; j<=w; j++)
      {
        num = sum[i][j] – sum[i-t][j] – sum[i][j-s] + sum[i-t][j-s];
        if(num > max)
          max = num;
      }
    }
    printf(“%d\n”, max);
  }
  return 0;
}

小心overflow的情形, 可以用double解決

#include <iostream>
#include <cstdio>
#include <cstring>
#include <queue>
#define MAX 1000
using namespace std;

struct position {
  int x, y;
};
struct position pos[MAX];
double square(double a) {
  return a * a;
}
double dist(int i, int j) {
  return square((double)pos[i].x – pos[j].x) + square((double)pos[i].y – pos[j].y);
}
int cost[MAX];

int main()
{
  int caseN;
  int outletN, from, to;
  double len, len1, len2;

  scanf(“%d”, &caseN);
  while(caseN–)
  {
    queue<int> q;
    scanf(“%d %d %d %lf %lf”, &outletN, &from, &to, &len1, &len2);
    from–;
    to–;
    len = len1 + len2;
    memset(cost, 0, MAX * sizeof(int));
    for(int i=0; i<outletN; i++)
      scanf(“%d %d”, &pos[i].x, &pos[i].y);

    int now;
    bool found = false;
    q.push(from);

while( !q.empty() )
    {
      now = q.front();
      q.pop();
      if(now == to) {
        found = true;
        break;
      }
      for(int i=0; i<outletN; i++)
      {
        if(i == now)
          continue;
        if(!cost[i] && dist(now, i) <= len * len)
        {
          //cout << dist(now, i) << endl;
          cost[i] = cost[now] + 1;
          q.push(i);
          //printf(“%d %d\n”, i, cost[i]);
        }
      }
    }
    if(found)
      printf(“%d\n”, cost[to]);
    else
      printf(“Impossible\n”);
  }
  return 0;
}

#include <cstdio>
#include <cstring>

int visited[10][10];
int main()
{
  int caseN;
  int n, k, i;
  int a[100], result;
  bool exist;

  scanf(“%d”, &caseN);
  while(caseN–)
  {
    scanf(“%d %d”, &n, &k);

 memset(visited, 0, 100 * sizeof(int));
    exist = false;
    result = k;
    if(result / n != 0)
    {
      for(i=0; i<100; i++)
      {
        a[i] = result / n;
        result = result % n;
        //printf(“%d %d\n”, result, a[i]);
        if(a[i] == k && result == 0) {
          exist = true;
          break;
        }
        result = result * 10 + a[i];
      }
    }
    //printf(“\n”);
    if(exist == false)
      printf(“0\n”);
    else {
      for(int j=0; j<i; j++)
        printf(“%d”, a[j]);
     printf(“%d”, k);
     printf(“\n”);
    }
  }
  return 0;
}

So, our son is now four months old and is the most amazing 4-month old you’ll ever meet.  Now, I am saying that as his dad, however that seems to be the consensus amongst quite a few of our colleagues and friends.  Over the past two weeks, he has been living at a summer camp for high school leaders (with his mom and me) and has been surrounded by over 500 kids and 100 staff, and they all say the same thing – he’s so alert, and never seems to put up a fuss.  Well, I think it all goes back to his birth.

My wife and I had a particular philosophy regarding the birth experience we wanted for our son, and despite or innate faith that we were doing the best thing for him that we could, she insisted on researching every aspect of our decisions. Fortunately, all the research she uncovered just reinforced what we planned to do, and gave us plenty of ammunition when we met with opposition (from our family).

We decided that birthing him in a hospital would be a traumatic experience that was completely unnecessary.  Instead, we chose a birth center staffed by 4 midwives (2 of which were nurses as well).  All of our prenatal care was done at the center with the midwives.  They reinforced our decision and reassured my wife that the birth process is something hard-wired in every mom.  When the time comes, she would know exactly what to do and how to deliver our son.  They would be there to assist and that was it.

With the decision to birth him out-of-hospital came the second bomb we dropped on our family – we were going to deliver him drug-free and we would not be putting anything toxic (i.e. medicines) on or into his body.  No pitocin, no epidural, no silver-nitrate in his eyes (my wife doesn’t have gonorrhea, so how could he contract that on the way out), no PKU shot (no one in our family is PKU sensitive), no Vit. K shot, and most certainly NO VACCINES.

On the day our son was born, my wife went into labor around 2:30 am.  We arrived at the birth center at 7am, and she quickly made her way to the birthing tub.  Unfortunately our son was posterior (his body was on her right side under her liver, as opposed to on the left side where there is more space), so her labor pains were all in her back.  Additionally, his placenta was anterior (on the front wall of her uterus) so he couldn’t flip into the right position (no matter how hard she tried).  She spent her labor in the tub, laying on the bed, squatting on an exercise ball, whatever she needed to do to help ease her pain. If she was thirsty, she had something to drink.  If she was hungry, we packed food for her to snack on. Looking back, there wasn’t a single ice-chip in the entire room!!!

Our son crowned around 1:30pm, yet it took another 1.5 hours of solid pushing to work his way out.  This is when the day got exciting and scary.  As with many babies, his cord was wrapped around his neck.  This really doesn’t cause the baby to strangle, rather it squeezes the cord and prevents blood and nutrients from getting through.  Because he was slowly working his way out for 1.5 hours, there was a lot of time that the cord was trapped between his neck and my wife’s body.  Once his head was free, the midwives quickly untangled the cord and my wife was able to work the rest of him out.  As his body slid out of her into the midwives and my hands, I completely panicked (internally).  His head was a deep purple, yet his entire body was ashen grey.  I thought he was still born.  The midwives were monitoring his heart beat and he had a strong pulse, but his color had me terrified.

Our four midwives swooped in like super heros and I stepped back and hid behind my camera.  They held him close to momma, rubbed his hands and feet, and had a portable ventilator ready if they needed it.  Then the most incredible sequence of events happened.  Our lead midwife carefully took his cord and gently squeezed her hand down the length of the cord (from momma to baby).  As the blood rushed through the cord, his color began to change and his skin looked much more human.  After what seemed to be forever  (probably about 2 minutes), our son tilted his head back, opened his eyes, looked up at momma and just let out a little sigh.

Our midwives call it placental resuscitation.   Our son didn’t need to take a breath since all of the oxygen he needed was being delivered through his cord.  He didn’t need medicine or an incubator, his body knew exactly what it needed, and that was just another minute or two to make the transition from the fluid-filled womb, to the cold air of the outside world.

Had we delivered him in a hospital, the instant his body was free they would have cut his cord and rushed him to neonatal intensive care.  He would have been on a ventilator and under a heat lamp. Most likely they would have administered medication to get his vitals up to “normal”.  Every hospital is different and I couldn’t say with 100% certainty what would have happened, I can only offer educated speculation.

Well, we didn’t cut his cord until about 45 minutes after he was born.  We decided that no matter where we were (birth center as planned or hospital in case of emergency), our plan was to let the cord continue to pulse and not cut it until it had finished it’s job of nourishing our son.  By the time my wife delivered the placenta (about an hour later), all of the oxygenated blood had been transferred to our son.  When the midwives allowed me to inspect the placenta, it was rather brown – not the bloody red color you may see in pictures or on tv (Discovery channel or something like that).  I believe that was because it did it’s job to completion.  It wasn’t cut off from our son too early.

About an hour later the midwives prepared an herbal bath for my wife and son.  The two of them soaked and spent a half hour staring at each other (while daddy had to hold back tears – again hiding behind my camera).  When friends and family see pictures of that day and of their bath together, the first thing they say is “I can’t believe how alert he is”.

Our son was born at 3:21 in the afternoon and we were home as a family by 8pm that same night.  We all slept in our own bed and had the joy of spending every moment with our son.  We didn’t have nurses telling us when we could hold him or feed him, we didn’t have family stuck behind a glass window or cramped into a tiny hospital room.  We had Olive Garden for dinner, and a living room full of family helping us.

So, that was 4 months ago and since then our son has had nothing in his body except breast milk.  He hasn’t caught a single illness (his 1-week older girlfriend has already had an upper respiratory sickness).  He was supporting his own head at week 3.  He started supporting his own weight on his feet at week 8 and is now able to stand with only 1-hand support.  He rolled over for the first time 5 days after turning 4 months old; and has only cried in public three times. He’s not fussy one bit, and he transitions smoothly between his parents and nearly every person who’s ever held him.  He’ll laugh, he’ll smile, and he’ll fit his whole fist in his mouth.

We have friends with babies close in age to our son.  He’ll have quite a few prom dates to pick from just from our immediate circle of friends. However, all of them were born in a hospital, and all of them have been medicated and vaccinated.   I know we made the right decisions for our son and it’ll be exciting to see how they all develop.  Will he be developmentally ahead of them?  Only time will tell.

A couple weekends ago, Big Monkey went down to south Florida with his Dad (Grandpa) to play golf in the PKU Golf Tournament. The event is to raise money for PKU Research. This is the second year that Grandpa has gone to the tournament. This year he also had two other buddies go with him. They all met down in south Florida on Friday and played a practice round of golf. Then they went to a social hour and out for dinner.

On Saturday, they played in the tournament. Big Monkey said there was a decent turn out and they had fun. They did not win any of the big prizes or door prizes, but Big Monkey did get a “PKU Swag bag.” Inside the bag was a coupon for one food company and a gift certificate for another. There was also a box of cereal, mac and cheese, water bottle, banana muffin mix, blueberry muffin mix and vegetable masala meal. When Big Monkey brought the bag home, Little Monkey was SO excited that all of this stuff was for him! He has since tried the vegetable masala and at first said it was good but then we had to fight a bit to get him to finish it. I am excited for him to test out some of the other foods that he hasn’t had before.

The PKU Swag Bag! All for Little Monkey!

The golfers also got golf “swag bags” but I didn’t take a picture. It included a golf magazine, two tshirts, divot repair thingys, coupons and some golf balls. If there was anything else in there, I’m not sure but that’s all I remember.

Hidangan Baru Untuk Penderita PKU

I haven’t posted on here in quite a while. Truth be told, I got pretty disillusioned with the PKU diet for a while there and went sort of off diet.

I’m trying to be back on track now, so hopefully (when I remember!) I’m back posting again.

I really DO want to have good blood levels… no one knows what happens to us PKUers when we get older, and to be honest, that’s pretty scary. We don’t know how being off diet or having unstable levels now will affect us in 20 or 30 years time.

I’ve been trying hard to be really good since last Thursday, and to be honest I’m feeling a lot better for it! It was my 26th birthday yesterday, and for the first time in I can’t remember how long I managed to stick pretty well to my diet, though I have to admit that I didn’t take a single drop of formula.

I want to go back on the preconception diet so I’ve actually been fairly strict up until yesterday (and I have been again today). I’m doing blood tests twice a week at the moment, so I did one yesterday morning when I got up. I also did one last Thursday before I started the diet and I’ve been religiously following 9 exchanges and three doses of Lophlex LQ a day since, so I’ll be very interested to see what my levels have done over those four days. I’ll post my results on here as they come through – I have to go and post yesterdays yet, since it was a public holiday (yay! Work free birthday!).

Things are going well otherwise. I’m not feeling too down about my PKU at the moment – I’m actually feeling pretty motivated and I’m quite keen on maybe ordering some PKU food from Cambrooke in the US once Ed and I get jobs. Ed is here now, which is fantastic. I’ve missed him so much and he is a huge factor in me staying motivated to stick with the diet. I thought it would be a lot easier to be strictly on diet when I was living at home with mum again, but the way I manage my PKU has changed so profoundly that to be honest, she just really didn’t get it. She comes from the school of thought where I can only have very limited foods, but in the UK they taught me that I could eat pretty much anything I liked as long as I weighed and measured it and counted the exchanges. She finds it hard, and very confusing to see me grate up some normal cheese and put it on my baked sweet potato (or whatver), even though I’m weighing and counting it (and I’m only getting like… 16 grams of it!). It has confused her and one day she served me up something based on chickpeas, so that was when I realised I was going to have to work even harder. I know mum doesn’t do it on purpose – i’ve just confused her so much with my on-again-off-again diet that she doesn’t know whether she’s coming or going with it. Still, when I get home and dinner (not weighed or measured) is already on the plate it doesn’t make it easy when I have to tell mum that its got too many exchanges and I can’t eat half of it.

I suppose she hasn’t had to manage my diet for quite some years, but she really is trying to get her head around my ‘new’ way of doing things.

So… so far, so good. I seem to be on track and I’m feeling better. Less tired, less grouchy, less emotional. I’ll be really interested to see how far my levels have dropped since I’ve been strict, but its only four days so lets just wait and see. I’m fighting the urge to drop my exchanges down to 6 per day, but I think I need to do these things slowly, especially as I don’t have the management of a clinic behind me at the moment.

I do get my bloods done through the clinic in Sydney, but to be honest they don’t seem to have a clue. I have an appointment in Brisbane next month… we’ll see how it goes. Hopefully they’ll be better than the last doctor I saw!

I’ll post my levels when they come through… fingers crossed for me!

This week, Amy and I worked on PKU-friendly cake balls. It was Amy’s idea and we are using the recipe to enter a PKU Food Recipe contest. Check out this post on Amy’s blog to see the details of making PKU-friendly cake balls. (She also has a link on there to regular cake balls if you want to make them for your non-pku friends/family.)

Yum! Three different flavors!