Tuesday, June 30, 2009

Pericarditus update...

Barney went to see the Cardiologist today and he would like to get to the bottom of why it keeps happening and returning so quickly. So Barney had to have lots of blood tests and he goes for an ECG tomorrow afternoon. He will see the Cardiologist again in 6 weeks time.

The Cardiologist wants Barney to go and see the Auto-Immune Dr again to see if his dry mouth is an auto-immune disease, which can cause Viral Pericarditus. It can also be triggered by a cold too, but they still need to know why!

I guess once they can get to the cause they can try to cure the Pericarditus. So something else to add to our list right now! YAY

Back to DHMC tomorrow for the twins too - U/S, Maternal Fetal Medicine Appointment, Pallaitaive Care Appointment and hopefully a tour of the Birthing Facility too. I will post again with more news in the next couple of days.

Tuesday, June 23, 2009

Oh yes,

and this is by no means secondary to the babies, but I forgot to add this bit, sorry Barns!!

Barney has spent some time earlier this year in the ER and outpatients due to Pericarditus (inflammation around the heart). This caused him chest and upper back pain. Since then he has had an MRI which has revealed no continual problems, but we did have a repeat of this episode today. He has viral Pericarditus and will be seeing the specialist again next week to see why it keeps coming back.

Will keep this updated as we have news!!


....I am sitting in my car outside my house while Grace sleeps in her car seat! I cannot carry her up the stairs in the house to bed anymore due to my enormous belly growing incredibly quickly! So when she falls asleep in the car I hang out with her and surf the net. I came across the link for our blog and will start to update this on a more regular basis now.

There is something important I need to share here and that is about our babies. On May 26th, 2009 we went for our ultrasound to find out that we have two wonderful boys. One of our boys, whom we have named Luke Alexander, is very happy and healthy and our other little boy, Samuel (Sam) Oliver, is probably very happy, but not so healthy.

Sam has a congenital birth defect called Anencephaly which is not compatible with life. This essentially means that his skull has not formed and therefore has not created the ideal environment for a brain to form either. An Anencephalic baby can grow and develop pretty normally in utero, but will not survive very long after he is born. We have been told that he will probably leave us before he is 48 hours old.

Here is the definition of bitter-sweet right here and how do you deal with that? How can you plan a nursery and a funeral at the same time? So what happens now? These are the millions of questions we asked ourselves a month ago when we found out about our little boy.

Since then I have been on many websites and have found wonderful support in the local area and on the web. We are firstly fortunate to know so many wonderful people who are there for us and will be there for us in the next few months. I have found a couple of groups/resources on facebook that have been very welcoming and supportive. There is a great deal of imformation out there, it is just a case of knowing where to look.

Our Midwife was there for Grace's pre-natal care and birth and she was at the ultrasound when we were told the news and has been, and still is, a fantastic support to us. I am going to continue under her care for as long as possible and she even said it may be possible for her to be at the birth, I hope so.

Dartmouth Hitchcock Medical Center (DHMC) has also been fantastic. A couple of days after we found out about Sam I dropped in to see my IVF nurse to tell her the news and she immediately called people in the Maternal Fetal Department to see if my appointments had been taken care of for follow up. On Friday May 29th we were in for another ultrasound and to see the Genetic Counsellor and the Maternal Fetal Doctor. Sam's condition was re-confirmed and they took some wonderful pictures (see above).

Since then we have seen the Palliative Care team at DHMC and they will be helping us to come to terms with what is happening in our world right now and what will be happening after the birth.

Our next appointment to see everyone is on July 1st.