Always a mummy………………..

Always a mummy………………..

Victor Frankl once said:

We cannot judge a biography by its length, by the number of pages in it; we must judge by the richness of the contents. Sometimes the "unfinished" are among the most beautiful symphonies.

Its been 34 days since we said hello to you Xavier and 35 days since we kissed you good bye until we meet again.

This journey has become so many things to me now; one of grief, strength (feels like none most days) the blessing of family and friends and us. The three of us….. trying to find our feet and our new routine and new normal.

We have been blessed with a network of family and friends that are incredible, this has been the backbone to helping us move from one day into the next. The glue has been my mum and hubby. These beautiful people have just hugged me and held when I have completely crashed because there are no words and that’s all there is sometimes.

I have felt no anger or resentment in any situation over the last month, which has been good because I think that those feeling would be harder to move on from. All I can say is hug those you love especially your children and tell them how important they are to you and how much you love them every single day.

Tiny Angel

For brief and fleeting moment, an angel touched the ground;
With tiny wings and halo, and sweet, soft angel sounds.

Blessing the lives of others, in beauty and in grace;
Those who saw the angel, knew God had kissed his tiny face.

The angel came for reasons we may not understand;
A journey brief, with gifts so great, and guided by God's hand.

So, rest now tiny angel, your work on earth is through;
In the beauty of God's perfect love we saw His gift in you.

Author Unknown

Anyone that knows me understands that I tend not to slow down very often.  There are a couple of things that I am having trouble dealing with and slowing down and quieting my mind is up there.  No I am not turning in a new age hippy…. mediation is helping but oh it is hard for an old dog, never been very good at learning new tricks.

The other speed hump is the physical side. Any mummy will know what I mean after a little one. I have all of that without my little man. That truly cuts very deep. Time everyone says is the healer. I am finding that the tears don’t come as often as before but saying that I have them streaming down my face.

Thank you the beautiful staff at the Mater, words just will never be enough for how you have guided us from the start and every single step of the way provided the tools and knowledge.

To everyone out there, please if you recognise that you are struggling with a situation and it seems to be getting on top of you and taking too much of a toll, please go to your Doctor and reach out to get some help.

Liz

xxxxx

Final Preparations and False Alarms

False Alarm!

Don't much enjoy these, and neither does Mum. We had a False Labor last week. Mum called me from work to say she was in quite a bit of pain so I went and picked her up and we went to see our GP.  Our GP tested the usual (blood pressure, temperature etc) and then checked X Man's heart beat and did a general observation of Mum.  Our GP thought it best that we head into the hospital so we packed ourselves up and off we went.

False Alarm

At the hospital they wired Mum up and began monitoring X Man's heart rate and Mum's contractions. The contractions Mum was feeling were very short, sharp and had no regularity about them. They did not progress into any rhythm or consistency.  Further checks were done and there was no other obvious signs of labor.  Mum was given some pain relief and given a bit of time to let it kick in.

After a while the pain did subside to a tolerable level.  The midwives were tossing up if to have Mum admitted for the night for monitoring just in case things progressed into true labor.  It was initially decided that Mum would stay overnight so I went and made arrangements for my work and also Mum's work.  When I returned Mum said that the midwives had come back and were going to do a test which checks for a protein which is present when labor is imminent within the next 72 hours.  This test returned negative so the midwives were happy to send us home with pain relief and instructions to return if things got worse.  Thankfully things settled down afterward and we have not had any issues since.

Needless to say, after this false alarm Mum didn't go back to work for her last two days.  She did go in on the Friday afternoon to say goodbye to everyone and apparently there were a lot of tears from everyone.  We were very spoiled by Mum's work.

Final Preparations

We had our last big checkup yesterday at The Mater with our Cardiologist.  Whilst there has been some improvement in the development of X Man's left side of his heart (from approx 25% to 33% the size of the right side), the size of the left side of the heart is still too small to work on its own and so we are still looking at proceeding with the surgical path. X Man is measuring well and our Cardiologist is happy that if X Man comes along now he is of a good size to operate, although if he can grow a little more between now and then they will be happier.

Final Preparations

We went for a tour of the Children's Hospital yesterday.  I was not prepared for the emotion that this tour brought. I think it really concreted what lies ahead and it shook me up quite a bit.  I said to Mum later on that in hindsight I probably shouldn't have done the tour as I believe I would have better managed things better once things were happening because I would only be focused on X Man and wouldn't notice the surroundings in the same way I did yesterday.  That being said, I am also in a way pleased that I did do the tour as I now know where X Man is going to be and what facilities are available not only for X Man, but also for Mum and I and also for Mr Two when he comes to visit.

X Mans due date remains August 1st, however, we really do not believe that we will get that far.  Mum is quite big (I am sure a lot bigger that she was with Mr Two) and the scan yesterday also showed that X Man has dropped and his head is down.  Just the last couple of days you can also see that X Man has moved down as he is sitting a lot lower than he has been.  I reckon we may see our little fella in the next week or so.

Our preparations are just about complete.  Mum's hospital bag has been packed for a couple of weeks now and is loaded into the car.  Mr Two has bought X Man a little toy to keep with him at the hospital, and we are going to get another little toy that X Man can give to Mr Two.  We have some photos of us printed and laminated to put in X Mans crib so that when we aren't there he can still look at us and see us.  We have books ready so that we can read them to him, and we have some music to play quietly for him as well.

The managers at my work are looking after us and are more than happy to adjust my hours as required.  At the moment my parents are coming over of an evening when I am working to help Mum out with Mr Two and then they are heading home once Mr Two is in bed.  I used to work until 10pm but because Mum is not able to physically lift Mr Two and can't chase him around, my hours have been adjusted so that I can finish at 8pm so I can get home in case Mr Two wakes up.  It is this flexibility at work which Mum and I are very appreciative of.

Mr Two is as excited as a 2 year old can be about having a brother.  When we ask him "where's your baby brother" he goes over to Mum and pats her tummy and says hello.  He can also say his brother's name (no, I am not saying what that is).  We are also pretty sure that Mr Two can tell that there is something up.  He is playing up quite a bit and has become quite a handful, but only for Mum and I.  He is a complete angel for everyone else.  Very frustrating but completely normal, and my research has shown that this is quite common for toddlers who have a new brother or sister on the way or who can sense there is something wrong but not be able to understand what that is.  Mum and I speak to Mr Two about X Man and let him know what is happening because he is big a part of this journey as the rest of us.  He can't communicate to us that he understands and we can't really tell what he does and doesn't understand, but we let him know every day that we love him and that even when X Man comes along Mr Two will still be our special little guy.

What Next?

Just when we thought that all our appointments were over, we have another appointment scheduled for the 16th July to see the Obstetrician.  Somehow I don't think we will need that appointment...

So really, next stop is labor.  How exciting! Can't wait to meet the little fella.

Counting Down....

Counting Down...

It feels like a lot longer than 12 weeks since I started this blog and introduced you to The X Man - Our Journey With HLHS (Hypoplastic Left Heart Syndrome).  So much has happened for us in 12 weeks.  The good news is that when all things are considered Mum, Mr Two and I are doing ok.  We have moved into the preparing stage and are starting to get things ready for the impending arrival of X Man.

Counting Down to Maternity Leave

Not long to go now!  Already Mum's transition has started, including a reduction in work load as her duties are reallocated, as well as a relocation of desk so that Mum's replacement can transition into the team.  For Mum, this is a strange feeling.  With Mr Two, Mum's employment situation was different and there was no need for any 'reallocating' or 'transitioning' and therefore none of the emotion that has come with this experience.  It is a different feeling to going on leave for a week or even resigning from a job. But even through all this emotion Mum is also very excited that this milestone is rapidly approaching.

For me, this milestone is when I know that things are really real.  While Mum has still been working things have pretty much stayed routine.  When Mum goes on maternity leave, then I will know that on any day at any time within the next 5 weeks our little X Man will come into our world and into our lives, and our real journey will begin.

Counting Down Appointments

One Day of Appointments Left!

After today, we have one more day of appointments to go before birth.  We had an appointment today with our midwife, just a general checkup today, nothing major.  X Man measured nicely and his heart was beating strongly.

It is very strange... every time X Man hears his own heart beat he goes crazy and starts running around.  Drives the midwife mad chasing him to be able to get a good listen, and drives Mum bonkers as he bounces off all the walls.  It is almost as if he knows that there is something wrong with his heart and he is trying to run away from it.  Very strange...

Counting Down to Birth

When will X Man be born???

Officially 1st August.  If this little boy is anything like his big brother, he will be early.  I still think (guess) 21st July.  We don't want him to come too early though, we need him to continue to grow and get strong ready for his impending fight.

Preparing

Mum and I are starting to really get moving on getting everything ready and prepared for X Man's arrival.  Things like Mum's hospital bag ready for when she goes into labour, as well as little bits and pieces for X Man.  We were given a great suggestion to print and laminate photos of ourselves so that when we are not there X Man can look at us and get used to seeing Mummy, Daddy and Big Bro.  We are preparing books to take to read to him, and we are going to also make some recordings of us reading books that can be played to X Man so he can hear our voices while we are not there with him.  This may also be helpful for the nursing staff to help settle him if he is unsettled while we are not there.  We have even started cooking some extra meals so that we can defrost and reheat them on nights where we get home from the hospital and we are both too buggered to cook (I am pretty sure there will be a few of these...).

We have been very lucky to have received so much good advice on how to prepare for X Man's arrival and extended stay in hospital.  We are sure that we have not thought of everything and are more than happy for you to leave your suggestions in the comments section below.

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

Post by HeartKids QLD.