Looking forward, not back.

This week marks 8 weeks since (give or take) since Chloe’s first open heart surgery. It seems like we all have lived a lifetime since New Years Eve, when she had it done. The scar is fading nicely and you wouldn’t know it to look at her that she even has a heart problem!

So it’s time to start counting the days til the next one, rather than counting the days since her first. Chloe had her first post operative review today with the cardiologist, Dr Ward. Was a crazy morning, though I was super organised and we were ready to go in plenty of time…only to get in the car and it wouldn’t start! Thank goodness my brother lives so close and hadn’t done his school run yet, he popped up and jump started the car and we got going.

A review includes an ECG, her SATs, blood pressure and respiratory rate. Also Dr Ward has a poke around her liver (an enlarged liver can be sign of heart failure) and listens to her heart (Obviously!). She also has another echo. As per usual, she lay there placid and happy, well right up until the echo (which she usually loves). Except she was getting a bit hungry today so she had a bottle while the echo was happening which is always a bit tricky.

The ECG was great, her SATs have predictably dropped into the high 80s, the doctors are still hoping this will drop further. Her respiratory rate is excellent and not at all laboured (as it had been in the past). The pulmonary band is doing its job. Great restriction of blood flow to the lungs. However, the echo showed that her VSD (Ventricular Septal Defect – basically a hole in between the right and left ventricle) has closed a little. Further restricting blood flow. This is not an ideal situation as this helps the blood flow through the heart, rather than getting ‘trapped’ in the underdeveloped side. Dr Ward does not predict that it will cause any further trouble and he’s been on the money with everything else so I trust him!

He was happy for her to stop her daily Lasix medication. Which makes me unbelievably happy. Initially he was reluctant as he didn’t want to ‘rock the boat’ and negatively affect her progress, but he said he didn’t think it was doing much at this stage. Many heart kids are on lasix as a preventative measure of stopping congestive heart failure, I imagine we will revisit this medication fairly soon.

She will also now be booked in for her first heart catheterisation. I guess there will be many of these in her life. This will happen under a light anaesthetic and will require an overnight stay at minimum, as long as there are no complications with it. Basically, they send in a little tube to have a peak around at what is going on, which helps the doctors plan for the Bi-Directional Glenn procedure, the next big operation. This heart cath will happen in the next month, I’m awaiting the pre admission information. Dr Ward predicts the Bi-Directional Glenn will occur sometime in the next 12 weeks, so it’s time to count down.

It goes without saying that each procedure in itself is very scary. I’m not sure if knowing what to expect with PICU, close obs and being on the ward is helpful, I guess ignorance is bliss at times. But knowing the procedure and how amazing the doctors are gives some amount of comfort. During the last 8 weeks it has been very easy to forget occasionally that there is anything ‘wrong’ with Chloe, we’ve spent a lot of time chasing the genetics team about the prognosis on Smith-Lemli- Optiz Syndrome as well as her feeding issues.

It would be an understatement to say that I’m nervous about the next operation. And even though at times I fully question God’s provision and plan for her life, and ours, I know that He holds her in his hands. I would like to say that my faith has not wavered at all, but that would be a lie. Though I always know deep down that God is in ultimate control and that brings comfort, or at least it should! It’s that old adage of wanting to know the plan for the future, wishing I could look a few years ahead and see that she is doing so well. As well as the good old WHY? question!

She really has had the odds stacked against her, SLO kids often have trouble with feeding orally and gaining weight, and heart kids also have trouble. Yet she has gained steadily since her operation and even is starting to wear 000! Finally! We can only continue to pray and hope that she will continue to defy the odds and do exceedingly well.

Chloe having a cuddle with Mike’s grandma on the weekend.

Finally cracks 4kgs!

Well Chloe reaches 3 months old and finally cracks the 4kgs! After three months of always seeing a 3 at the beginning of her weights I was pretty excited to see a 4! Her weight gain continues to be the topic of most conversations and the source of much stress for me. For those who continuously ask, no I’m not getting anymore sleep! Chloe does not sleep through the night and requires a bottle every 3 hours even at night. So no, sleep doesn’t appear to be coming any time soon.

Feeding is also a source of constant stress, probably for her as well. She does not have a very productive ‘suck’ as she tires easily. After many efforts with many different bottles we found one that hopefully suits her the best. I’ve also taken to ‘helping’ by doing what I call a ‘fish face’! A little gentle pressure on each cheek to help form her mouth around the teat works wonders, and takes a little coordination from me, something Mike still has yet to master with his big man hands! This is the only way I can get her to take most of the bottle, which is still only about 90 mls. Though we must be doing something right because she is growing! She has grown out of her ‘newbie’ clothes, well, some of them and finally fits the 0-3 months outfits we have.

Life is busy with her, there is still yet to be a week where we haven’t visited a doctor or spoken with one on the phone! Last week we visited a geneticist to discuss the diagnosis. This was a private geneticist because after being told she had Smith-Lemli-Optiz Syndrome (SLOS) the hospital and QLD Genetics like to wait about three months before meeting to tell us what this means. Being the person I am, I was sick of waiting (still waiting for that appointment in mid March) so I made an expensive appointment with a private doctor. This was also to discuss cholesterol therapy, as children with SLOS don’t produce cholesterol this is a supplement which can work to help their development. The biggest problem is that the syndrome is so rare in Australia that there aren’t many studies or doctors who are knowledgeable about it. And the cholesterol therapy is mostly an experimental drug and so doctors here aren’t too willing to get behind it. So, we continue to try and source a doctor who might be able to help us get some! I will continue to advocate for anything that might help her along the way so I pursue this with doctors every time I meet with them.

This week we are visiting a chiropractor. Now I don’t hold much belief in chiropractors, but in saying that I’ve never been to one! But I’ve heard great feedback about how they can help bubs with digestive problems and feeding issues. So at this point I’m willing to try anything for her that doesn’t have nasty side affects. She is currently on another medication in addition to her heart medication, something for silent reflux called losec. It’s only been a few days but Mike is sure that it’s already doing something, I remain skeptical as per usual!

We also have a check up with the paediatrician. Last week we went to the nutrition clinic. It’s these visits where her feeding and weight gain are a massive issue. Chloe is now totally formula fed, for ease with managing calories and feeds. I don’t make the formula up as instructed but rather at 1 and 1/4 strength, in order to add calories for her to help weight gain. This is a relatively new development so I am looking forward to seeing great results at her weigh in tomorrow.

And I might be biased, but I think she is adorable and super cute! She is very alert and interactive and loves to squeal in delight and smile and play. She is particularly fond of a play gym that my brother’s family gave her. She has also discovered her hands and enjoys sucking on them quite loudly, in lieu of her dummy.So far, apart from her tiny stature, it would be hard for any stranger to know there is anything ‘wrong’ with her. On the upside, I’ve got far more use out of her newborn clothing than anyone thought I would!