The Good, The Bad and The Not So Ugly

The Good, The Bad and The Not So Ugly

Wow, what a day!  At the end of my last post (Acronyms, Acronyms, Acronyms... An Update On X Man and Mum) I mentioned that we had a full day ahead of us at The Mater. Well, that day was yesterday.  All up we had four appointments, three with various departments within the hospital and the fourth with HeartKids QLD.  There was some good, some bad, and some not so ugly outcomes from the day. Overall, Mum and I are "frazzed", our heads are spinning as we work at processing everything.

Frazzed!!!

The Bad

Let's get this out of the way earlier and finish on a positive note...

Our second appointment yesterday was with the Neonatologist (AKA Baby Doctor).  His job was to go through things with us to ensure we understood what was happening now and on the road ahead.  We were hit with a bombshell, something that we had not even thought to consider and that no-one else had brought up with us as yet.  We were told that children born with a CHD are also commonly born with other genetic defects, such as Down Syndrome (just to name one that I am aware of).  Now the kicker here is, if there are other genetic defects, or other severe abnormalities within X Man, then there is a high chance that the surgeons will not operate, and we will have no choice but to allow X Man to pass peacefully...

Up until yesterday I had not even considered this, nor had Mum.  We believed that the only risk to prevent surgery is an undetected issue with the heart that would make surgery impossible.  We were not prepared for this news and it has impacted us quite a bit.

This being said, from all the information available to us X Man is growing at a perfect rate and we are remaining confident that we are brewing a little fighter who is getting ready for the fight of his life (if you ask Mum, he sure is doing a lot of training and workouts in there!).

The Not So Ugly

The first appointment yesterday was with the Diabetic Physician to check to see how Mum's first couple of weeks of test results for the Gestational Diabetes.  So far, apart from a single big blip (no more raisin toast Mum) everything is looking good toward Mum being able to get through the remainder of the pregnancy controlling the Gestational Diabetes with diet, so without having to use insulin.

The second half of our second appointment we were taken on a tour of the special care nursery where X Man will be taken straight after birth.  He will be here for up to a week, this time frame being dependent on day and time of birth, his health after birth, the surgeons time frames etc etc... It should be a day or so prior to the first operation that he would be moved over to the Mater Children's Hospital.  The tour was very good, we were shown where everything is and what we can expect during the time X Man is in the nursery.  For Mum, this tour had been a source of anxiety in the lead up to it, but I think with the bombshell we had been hit with moments earlier Mum's brain was "numb" (as was mine) and Mum was able to get through the tour without any issues.

Our third appointment for the day was with the lactation consultant.  Because X Man will likely be fed through a drip until sometime after the first operation, Mum will need to express to not only stock up ready for X Man but to also ensure that her milk levels stay high.  This was very informative and it gave Mum a clear picture of what lies ahead with regards to breast feeding.

On this note, if anyone has an electric breast pump that they would like to sell (or donate) please let us know, we will need one for home and apparently it is cheaper for us to buy one than to rent one.

The Good

A week or so ago, HeartKids QLD shared a very interesting article, a Q&A with Prof. Sally Dunwoodie at the Victor Chang Cardiac Research Institute (link). Prof. Dunwoodie is researching the genetic cause of CHD's. After reading the article, Mum and I discussed our thoughts on offering ourselves as case studies to Prof. Dunwoodie to help with her research.  For Mum and I, the cause of X Man's condition is inconsequential, knowing this is not going to help solve X Man's problem.  However, if our participation in this research goes toward providing answers to families why do want to know why, or even to a possible prevention of CHD's, then we would be be thrilled to know that our journey has provided such a positive outcome.

I sent a message to Prof. Dunwoodie and was excited to have received a call from her, albeit a Voicemail as I was working at the time.  A couple of more phone tags between us and I was able to speak to Prof. Dunwoodie yesterday.  We had a wonderful conversation about our journey and about Prof. Dunwoodie's research.  Mum and I have now been referred through to one of Prof. Dunwoodie's colleagues who is going to contact us to discuss how we can help from here.

We are going to be receiving so much over the coming months/years, Mum and I are very thankful for the opportunity to give a little back.

After our phone call with Prof. Dunwoodie, Mum and I were privileged to meet Angela from HeartKids QLD.  Straight away Mum and I felt at ease and comfortable and it was also great to speak with someone who has traveled a similar journey to ours (Angela's son had HRHS and is now 9 years old).  We basically just sat there and chatted about everything. Angela's knowledge and advise was amazing and after the day we had had, so very welcome.  HeartKids QLD will become a part of our lives when X Man comes along and after meeting Angela today Mum and I are so grateful that this organisation is going to be there for us.

Earlier in the week HeartKids QLD posted to their Facebook page some awesome news regarding HeartKids QLD Medi-Hospital (link), where regional HLHS babies will have the chance to spend time away from the hospital with their family in a homely environment between surgeries. Currently these babies would be admitted to hospital for 4-5 months.  Parents will be trained in the care of their baby and report back to the hospital daily.  Whilst we are not holding our breaths and we would put ourselves ahead of any other family who needs it, Angela did suggest that there MAY be an opportunity for us to take advantage of these facilities if they are not already being used.  This would be awesome and so very much appreciated if we did have this opportunity.

The End (Start) Draws Near

August 1st remains the official due date, I am sticking with my guess of July 21st... We can look at it as the end of the pregnancy drawing near, or we can look at it as the start of X Man's journey drawing near.  There is no right or wrong, each has its own positives and negatives.  Mum has grown used to having X Man with her and the knowledge that X Man is safe and well while growing inside.  Right now Mum is in control.  The downside of this is that Mum is now getting nervous about birth, knowing that once X Man is born that sense of control is going to be gone as a lot of what happens after X Man is born is outside of our control.

For both of us we are excited that before we know it we are going to get to meet our little X Man and we are going to get to tell him face to face how much we love him.

Acronyms, Acronyms, Acronyms... An Update On X Man and Mum

Acronyms, Acronyms, Acronyms... An Update On X Man and Mum

HLHS, CHD, DORV, VSD, SVC, GDM... OMG WTF???

In my original post The X Man - Our Journey With HLHS (Hypoplastic Left Heart Syndrome) I introduced us all to our road ahead with our little X Man and his Congenital Heart Defect known as Hypoplastic Left Heart Syndrome. Today we had our next appointment with our Cardiologist (Mum & I thought he was our surgeon, but we found out today he is our cardiologist and that we would meet the surgeon(s) just prior to surgery).

The scan today showed that the left side of the heart is still only around a quarter the size of the right.  This makes it more likely that we will go full term and have no improvement in the left sides size. There have been a couple of very rare cases where the left side of the heart has miraculously grown to a size of 70% that of the right but as the size difference is so dramatic in X Man this looks unlikely in his case.

What we did find out today was what makes X Mans case of HLHS different from "classic" HLHS, which enables us to have the operations here in Brisbane rather than having to travel to Sydney or Melbourne.  In Classic HLHS (Hypoplastic Left Heart Syndrome) there is no "outflow" from the left side of the heart, rather there is "backflow".  In X Man, there is outflow due to a condition known as DORV (Double Outlet Right Ventrical).  Because of this X Man has a variation of HLHS known as Hypoplastic Left Heart Spectrum.

Double Outlet Right Ventricle with Subaortic VSD

In double outlet right ventricle, something goes wrong during the formation of the heart in the womb, and both great arteries (the pulmonary artery and the aorta) are attached to the right ventricle. No arteries, or only a part of the aorta, are attached to the left ventricle.

We also found out today that X Man has a hole in the heart, or in medical mumbo jumbo, a VSD (Ventricular Septal Defect).  This is a hole in the septum, the wall that divides the right and left ventricle. The VSD is actually helpful — it allows X Man to live. Without the VSD, blood that traveled to the lungs and back to the left side of the heart would have no place to go, since the aorta isn’t attached to the left ventricle, and no oxygenated blood would reach the body.

There are a number of types of VSD's, X Man has what is known as Subaortic VSD.  The VSD allows oxygenated blood flowing into the left side of the heart to cross over to the right ventricle, and be pumped out to the body through the aorta.

So, all up X Man has Double Outlet Right Ventricle (DORV) spectrum, subaortic VSD. small left ventrical, mitral valve, aortic valve, hypoplastic aortic arch/aortic coartation, bilateral SVCs (right SVC to right atrium, left SVC to large coronary sinus). This diagnosis provides a positive outlook toward the doctors being able to perform the Norwood Procedure after birth.

An Update on Mum

While Mum was pregnant with Mr Two, Mum was diagnosed with Gestational Diabetes. Through careful diet management Mum was able to control the diabetes.  Last Friday Mum went and had the test done for Gestational Diabetes.  Mum has been careful with her diet from the day we found out we were pregnant, but alas, the results came back today and it is confirmed that Mum has Gestational Diabetes again.  Mum is confident that with continued control of diet that she will be able to manage the Diabetes just like she did with Mr Two.

The blood test also showed that Mum's iron levels were low, which could very well explain why Mum had been feeling off for the past few weeks.  Mum now has to take iron tablets to increase her iron stores to ensure there is enough iron not only for X Man but for Mum as well.  We have been told that Mum can expect to start feeling better as soon as a week from now. Fingers crossed.

Contortionist

We were given a copy of a 4D image the radiologist took whilst performing the scan today of our little contortionist.  Seriously little man, I know it is cramped in there, but how do you get yourself into this position?

X Man

X Man

Upcoming Appointments

We have a couple of weeks off now before we have a full day at the hospital with numerous appointments.  We meet the Diabetic Physician, we then meet the Neonatologist and have a tour of the nursery, and then we are going to meet up with a lady from HeartKids QLD to touch base.

Within the following month we will have another regular checkup at The Mater before another appointment with the Cardiologist at the start of July.  That appointment will probably be the final scan before X Man is born as by that stage the heart will be fully developed and the extent of the deformation can then be assessed ready to prepare for surgery.

Wow! All things considered, we're doing ok!!!

How are we going to get through this???

Ever since mum and I received the news of X Man having HLHS (The X Man - Our Battle With HLHS (Hypoplastic Left Heart Syndrome)) we believed that we had both been struggling to keep on top of things, especially our emotions. Both of us are prone to breaking down at the drop of the hat, more often than not if we are tired or if there is some sort of trigger to set us off.  Along with this is what seems to be the never ending list of things that we need to organise and/or put in place to prepare for the arrival of our little X Man.  How would we ever be prepared for our road ahead???

How are we going to get through this???

Mum and I always speak to each other and discuss everything.  We have an amazing support group of family and friends and we speak to them and keep everyone up to date with everything that is happening.  This is awesome and both Mum and I are so grateful for this.  However, all of our friends, all of our family, as well as Mum and I, we are all emotionally involved in this journey.  We are all on the same train with the same destination.  Mum and I needed an outlet that was emotionally removed, an independent ear to which we could openly communicate who was removed from the emotion of our journey (as much as is humanly possible). We had discussed this with the midwife at The Mater and we were referred to a counselor.

Being Prepared

On Friday we met with the counselor. Nervous as we were, my intuition told me immediately that our counselor was going to be great and I was put at ease making it easy for me to open up. Speaking with Mum later she also had similar feelings.  Mum and I discussed where we were at physically and emotionally. Our counselor guided us through our time from now until birth and was even able to provide us a brief explanation on what would haven once X Man is born (ie, where he will go, where Mum will go, where I go etc etc). We were very grateful for this information as it gave us a little more clarity.  We went through what we needed to think about and prepare for over the next few months so that when X Man decides it's time to come we are prepared as much as possible,

Guess what??? We are so prepared! Most of what was suggested to us Mum and I had either already taken care of or had already discussed and put in place a plan.  For me this was a shock because I felt that we would never be ready.  This was such a relief!

We're doing ok!!!

We spoke about our emotions. We spoke how sometimes we would break down, sometimes for no reason, sometimes with triggers. I thought maybe I wasn't emotional enough, that maybe I should have been more emotional than I was.

Well, the prognosis is, we are normal and our emotions are perfectly acceptable and to be expected considering the journey we have ahead of us.  The randomness of our emotional moments is nothing strange and can often be impacted by physical and emotional variables (we know this, especially when we are tired).

Redundant? Don't you go anywhere!

As our time was ending with our counselor and we all had come to the conclusion that we are actually doing quite well, our counselor actually said to us that we were making her redundant!  Not a chance in the world! We may be doing pretty well at the moment, but as things get closer and especially when X Man comes along and we are in that critical phase, I am sure that our counselor will become one of our best friends at the hospital whilst we travel our journey with X Man.

HeartKids QLD 30th Anniversary Gala Ball

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