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.