Sunday, August 22, 2010

2nd Glucose screening

Another mommy update!

Turns out my glucose levels were high once again after my 3 hour glucose test (which wasn't fun at all). This means I have gestational diabetes (only present during pregnancy) and I will have to follow a diet plan to ensure I am getting the right amounts of nutrients, but also lower my sugar/carb intake. I will also have to test my sugar levels every day until I can learn to maintain my sugar levels right.

I've already changed my diet a little before I go meet with the dietician, and this is hard! I must stay healthy though for my baby boy because he will need it for surgery!

Sunday, August 15, 2010

Glucose Screening 1

Mommy update!

At my recent ob/gyn visit, I had to do the glucose test which wasn't bad at all. We ended up getting a call back the very next day and turns out my number was 164 which is really high! I guess they want the number to be under 140 so now I have to go back to do the 3 hour test! I really hope gestational diabetes isn't something else we are going to have to tackle! Especially since this can also affect our baby boy! My appointment is August 18 so wish me luck!! I will keep everyone posted!

Friday, August 6, 2010

Pediatric Cardiologist

We met our pediatric cardiologist on August 3, 2010. She performed a fetal echo cardiogram and followed up on the diagnosis we were given prior to this day. Sure enough, the words hypoplastic left heart syndrome came rolling off her tongue! She drew us diagrams of a normal heart vs an HLHS heart, and explained how each worked. She also drew us diagrams of how this condition will be fixed. The first open heart surgery is called the Norwood. This surgery will be done 3-5 days after delivery. The 2nd surgery is called the hemi-fontan aka the Glenn Shunt procedure. Depending on the baby, this surgery will be performed between ages 4-8 months. The last procedure is called the Fontan procedure, and this is usually done between ages 18-24 months of age. After all 3 surgeries are performed, there is still a possible chance of the child having a heart transplant in it's later years.

The pediatric cardiologist definitely shed some light us on, and gave us more hope than what the doctor had given us. She sounded pretty confident in the CV surgeon and the team here at St. Vincent. Of course I did my own research and found out that this hospital has the 3rd lowest mortality rate in the entire nation! That seems like a really good outcome for the patients! I was also told from other HLHS families that the CV surgeon at the children's hospital is one of the best in the nation. Can't wait to meet him! :)

We are scheduled for a follow up echo cardiogram because our baby likes to hide his heart from the professionals, so the cardiologist wants to try and get one last echo in before he gets too big!


After the extensive u/s was performed, I was told that they needed to do an amniocentesis to get the baby's chromosome tested for anything other conditions related to missing or extra chromosomes. I refused an amnio in the past, and the doctor could tell I was concerned about having thing done. He mentioned to us that the risk of having a miscarriage is lower than his chances of survival so I might as well do it. Looks like I had no choice. The doctor performed the amnio, which was absolutely uncomfortable. We were told the amniotic fluid would be federally expressed to New Mexico for testing and that we would have the first set of results in 48 hrs.

Sure enough! The genetic counselor called me on friday, July 30th and said that results are good news and chromosome 13, 18 and 21 were tested first and they came back great! Nothing missing, and no extras! We were so relieved to find out some sort of good news after the devastating news we received days before.

The diagnosis

19 weeks 
We went for a routine ultrasound at my regular OB/GYN office to get the latest update on our growing baby and to find out what the gender of our baby was. Surprise, it's a boy! Everything went well, however, the ultrasound tech wanted to schedule us for another u/s because she couldn't get a good picture of all 4 chambers of his heart from the way he was positioned. We left the office with plenty of cute u/s pictures, not thinking that anything could be wrong, we left the office really excited!

24 weeks
Once again, we went in for a follow up ultrasound at my OB/GYN's office in hopes that our baby was positioned good enough to get pictures of his heart. Unfortunetly, the u/s tech wasn't pleased again. She stated that once again she saw a shadow over the heart. She left the room to confront the doctor about what she was seeing, and to see if he would come take a look at what we were dealing with. The doctor refused to come in, instead he had us scheduled to see a specialist for an extensive ultrasound. After leaving the office, I was beginning to worry that something actually might be wrong with his heart, and no one was telling us anything. 

25 weeks
Our appointment for the extensive ultrasound was at St. Vincent Women's hospital with the Maternal Fetal Medicine office. At first, we had an u/s tech perform a 15 minute u/s and gave us detailed description at everything she was looking at. After this, a doctor came into the room and performed his own u/s, which took 15-20 minutes. After he was done examining the heart, he told us that it looks like the baby's left ventricle was not getting any blood flow and that his tubes may be twisted. He called this condition hypoplastic left heart syndrome and said the baby will need immediate surgery after birth. He also mentioned that babies with this condition only have a 50-70% chance of living into their teens. After hearing all of this, I was completely heartbroken and upset. Nobody likes to hear that their child's life expectancy could possibly be short. After this was mentioned, I pretty much zoned out and stopped listening to everything that was being said. It was unreal.