Friday, April 17, 2009

Let the Complications Begin

Today was my second appoinment with the wonderful Dr. S, my OB/GYN. The good news from the appointment is thatso far it doesn''t appear I am developing gestational diabetes again, and I am also now feeling her kick more strongly and more frequently, all great things. But...after my last appointment at 10 weeks he ordered a bile salts test, to get a baseline to compare against later on in case I began developing symptoms of Intrahepatic Cholestasis of Pregnancy, which is a liver condition that I had during my pregnancy with Joey. As it turns out he won't be getting a baseline, because the values are already substantially elevated, indicating that it has already started with this pregnancy. It's relatively early for this to have started already which can indicate that it will develop more seriously as well.

In case you don''t know what ICP is, here is the description according to the March of Dimes:


What is ICP?

ICP is a pregnancy-related liver disorder in which there are abnormalities in the flow of bile (a substance produced by the liver that aids in the digestion and absorption of fats). These abnormalities lead to a build-up of bile acids (components of bile) in the mother's blood, resulting in symptoms such as severe skin itching.

What are the symptoms of ICP?

The symptoms of ICP can range from mild to severe. Symptoms usually start in the second or third trimester of pregnancy. The most common symptoms include:

Skin itching: Itching often is most severe on the palms of the hands and soles of the feet, but many affected women itch all over their bodies. It often gets progressively worse and may interfere with sleep and daily activities.

Jaundice: This yellowing of the skin and whites of the eyes occurs in 10 to 20 percent of women with ICP. Jaundice is caused by a build-up of a chemical called bilirubin in the blood, resulting from the liver disorder and decreased bile flow.
A pregnant woman should call her health care provider if she has these symptoms.

How common is ICP?

In the United States, ICP affects less than 1 percent of women.

What are the risks of ICP in pregnancy?

ICP can be very uncomfortable for the pregnant woman. It also can hurt the baby. Up to 60 percent of women with ICP deliver prematurely (before 37 completed weeks of pregnancy). Premature babies are at increased risk for health problems during the newborn period and for lasting disabilities and death. ICP also increases the risk for stillbirth, though the risk is small (1 to 2 percent). It is important to diagnose and treat ICP to help prevent these potential problems.

How is ICP diagnosed?

There are a number of skin disorders of pregnancy that can cause itching; most do not harm the mother or baby. Blood tests can tell if a woman's itching is due to ICP. These often include a blood test that measures various chemicals that show how well a woman's liver is functioning and the amount of bile acids in her blood.

How is ICP treated?

ICP often is treated with a medication called ursodeoxycholic acid (Actigall). This medication relieves skin itching, helps correct liver function abnormalities and may help prevent stillbirth.

The health care provider monitors the baby closely (with ultrasound and tests that measure heart rate) to see if the baby appears to be developing any difficulties, such as heart rate abnormalities, due to ICP. If the baby is having difficulties, the provider may recommend early delivery to help reduce the risk of stillbirth. The provider also may do a test called amniocentesis when the baby is at about 36 weeks gestation to see if the lungs are mature. If the baby's lungs are mature enough for the baby to breathe on his own, the provider may induce labor at 36 to 38 weeks to help prevent stillbirth.

What causes ICP?

The cause of ICP is not well understood. Pregnancy hormones and heredity appear to play a role. ICP appears to be more common in twin (or other multiple) pregnancies, possibly due to increased hormone levels. About half of women with ICP have a family history of related liver disorders.

Does ICP go away after delivery?

Symptoms of ICP generally clear up on their own by about two days after delivery. However, about 60 to 70 percent of affected women develop ICP again in another pregnancy.

Doesn't that all sound so pleasant? The symptoms in my pregnancy with Joey weren't really noticeable until I was about 6.5 months along. It''s also very likely that ICP is wha caused Joey to be born a month early...I was scheduled to be induced at 37 weeks due to the ICP but Joey came on his own at 35 weeks 6 days. This time is a bit different...I started feeling itchy about 2 weeks ago but said nothing to anyone, I really believed I was being paranoid and imagining things. With me it also doesn't start on the soles of my feet and palms of my hands, which is the most typical. I started feeling my back get itchy (not fun when no one is around to scratch for me!) and the front of my calfs.

So today I started the medication, which will hopefully bring my bile salt levels in my blood down to a safe level for both the baby and myself. It should also stop the incredibly annoying itching, or at least make it more manageable I hope. In the meantime Dr. S. wants me to meet with a specialist at Mount Sinai Hospital in Toronto within the next 2 weeks for further advice on treatment.

Despite receiving this bad news today I am still so happy tonight, since our sweet baby Joey will be returning from Florida tomorrow! Jason and I have missed him terribly and we can't wait to see him. Unfortunately for him the vacation ends pretty abruptly over the upcoming week, he has an appointment with the pediatrician on Wednesday and a dentist appointment on Thursday, along with all the work he has to catch up on with his physiotherapy and walker class. Poor kid, he's more schedued than we are :)

- P, J & J

Tuesday, April 14, 2009

G-Tube Update

Today I received a call from Dr. J, the developmental pediatrician we met with in February. She was calling because Sick Kids Hospital sent her some forms regarding our consultation for a G-tube scheduled for May 19th and she needed further information from me.

When I told her of the new developments in regards to Joey's feeding she sounded quite alarmed, and said she will be calling Sick Kids tomorrow to get the appointment moved up because, in her opinion, this is now "rather urgent". She was not happy to hear that he was no longer taking any liquids at all (other than about 2oz of water in the morning and at night after we brush his teeth). I suppose there is a concern about dehydration, but I am very concious of it and know for a fact he is nowhere close to being dehydrated.

It was a bit disheartening to hear her language change from "if you decide to go ahead with a G-tube" to sounding more like this is a medical necessity, but I guess this isn't a shock. We've tried for over 3 years now to avoid a feeding tube, it has been difficult, time consuming and very frustrating. I think it's time to realize that we aren''t going to be able to fix this problem quickly, and in the meantime Joey needs to receive proper nutrition.

- P, J & J

Monday, April 13, 2009

Happy 3rd Birthday to Joey

On April 1st Joey turned three years old. We didn't have a big party this year, as we were leaving for Florida the next day, but we decided to have a low-key pool-side BBQ while on vacation. I can't believe it's been three years since Joey came into our lives! In some ways it feels like yesterday, but in other ways I can't remember what my life was like without him in it.

And in keeping with the tradition he started last year, a few days before his birthday Joey went on a bottle strike. For the majority of 3-year-olds this is not a huge deal, in fact there are few 3-year-olds still drinking from bottles (I know this because of the judgemental stares I get from people while giving Joey a bottle in public). But for Joey this is a huge source of nutrition completely cut out of his diet. Up until now Joey would drink about 2 cans of Pediasure Plus (1.5 calories per ml.) from a bottle per day, one in the morning and one before bed, but now he's decided he wants none of it. Last year he replaced this with eating a huge amount of varied foods...this year, he's just increased the amount of the 3 or 4 things he already eats, namely Minigo (strawberry only), pudding (chocolate only), yogurt ("pink" flavours only) and blueberry baby food. This new phase is troublesome for so many reasons...Joey still does not feed himself at all, and does not eat a lot at one sitting, so that means he has to be fed at least 6x per day, which is time consuming, and he will only eat for a select group of people (right now that's Jason, Grandma Phyllis and to a lesser extent, me). Joey's caloric intake has dropped from about 1200/day to about 900/day, if we're lucky. I'm not even sure that 1200 calories a day was enough, given that he is still EXTREMELY thin and weighs less than 25 lbs at 3 years old.

So the light at the end of the tunnel, if things don't take a major turn for the better, is that we received notification that our appointment with the GI clinic at Sick Kid's hospital in Toronto for a G-tube consult is May 19. I can say for sure that if things don't improve drastically we will be going ahead with the surgery, and Joey will likely have a G-tube in place sometime this summer.

I've always said that pictures of kids covered in food were completely disgusting and should be viewed by the parents only, but since Joey has such a negative relationship with food I tend to celebrate any milestones, such as this little beauty:

Smiling while covered in chocolate pudding and strawberry Minigo...yummmmy!

Joey did extremely well on the flight from Toronto to Tampa. We had some very nasty turbulence that scared me out of my mind, but didn't bother Joey and actually seemed to act as a tranquilizer on him:

Joey also got a chance to sport his new fancy schmancy Superman swimsuit on the beach, courtesy of Zia Jodi and Uncle Jason for his birthday:

Last but not least, while we were in Florida decided to go ahead and get an "elective" ultrasound, something not readily available here in Canada. This was for the sole purpose of finding out the sex of this baby, since I am one of those people that would find out the sex at conception, if there was a way to do so. I was 15 weeks exactly, and the person doing the ultrasound said right away that this baby, much like her older brother, put her goods on display immediately and she could tell us that it's a GIRL! Joey is getting a little sister :) Here are some of her first pictures:

Umm, apparently since there's nothing "pointing back" towards the arrow this indicates that the baby is a girl. I'll just have to trust them on that one, since this just looks like a messy blob to me.

Now this one at least looks like an outline of a baby :)

So Joey is still in Florida with Grandma and Papa Roy for another week, lucky guy. We're both enjoying some lazy time but I miss the little guy terribly. Only 5 more sleeps!
- P, J & J