A smooth surgery.

Chloe went in to surgery about 8:45 this morning and was out in the PICU (paediatric intensive care unit) by 12:15. The surgeon says the operation was smooth with no surprises and she’s been stable since then. The nurses are amazing. Mike and I are so relieved but we also know that she needs to keep fighting strong and do well. Hopefully she will come off the ventilation tomorrow and breathe on her own. And hopefully they have the band on her artery just right so there will be no need to open her chest again.
More updates later but mike and I are very grateful for all the prayers and positive messages we’ve received. Here’s little Chloe after the surgery.

Surgery is on

Well it’s all systems go here at the hospital. The cardiologist has decided that its best to get her in for surgery. So tomorrow is the day for her first open heart surgery on her pulmonary artery.

She’s been on continuous tube feedings now for over 24 hours and is a lot more settled and happy. Although as I write this she is getting bloods taken for pre operation tests, which doesn’t make anyone happy. Poor little Chloe though is strong and likes to punch her arms and kick her legs at the doctors! Everyone comments how strong her little legs and arms are! Hopefully it’s a sign of a strong fighter within.

Please pray for her and her family and all the doctors.

Finally, here’s a picture of her chilling out in the bath tonight!

A little check up turned into a hospital stay

So yesterday Mike and I took Chloe for her weekly check up with a new cardiologist at the Mater. He was very thorough and so far happy with how she is progressing.

He explains it that they actually need to see the decline in her so that they can fix her just the right amount. We have seen her become more laboured in her breathing lately, especially the last few days.

More concerning was her lack of weight gain. Because she is working so hard to feed she is burning the calories too fast and therefore not putting on weight. It’s almost like she is constantly running a marathon but isn’t getting enough calories to sustain that pace. So although she is gaining, it’s just not enough.

So the doctor thought it best to put her in hospital and get a nasogastric tube in. This will enable tube feeding along with some bottle feeding. Hopefully the ‘lazy’ way of eating will help her gain weight. We are also fortifying the milk with some added supplements.

So Chloe and I are ‘rooming in’ at the Mater while we get the feeding right. This may mean surgery will happen sooner or we will go home with a feeding pump for her.

It’s all a bit stressful for everyone but we are also acutely aware of how she will have many little hills to climb like this. And as usual, she battles on looking all cute. In fact, I’m pretty certain she will smile at us any day now! I’m actually convinced she smiled at me on Christmas Day!

Santa pic

Chloe’s first Santa photo! She’s almost smiling. 🙂

Christmas is coming!

I have totally forgotten that Christmas is coming fast. And I realise that come Christmas day, Chloe will be one month old. Cannot believe how time goes fast.

I sometimes look at her and think ‘how can something be wrong’? She looks so perfect and cute. Albeit little. But as she approaches four weeks old I’m reminded by what the doctors said initially, ‘at about 4-6 weeks she will start showing signs of heart failure’. Truer words could not be spoken.

I actually thought she was doing really well, and in most cases she is. However, she is not putting on weight at the expected rate. She has only just reached her birthweight and the doctors would be happier if she gained more weight than that. Mike and I would be happy if she gained more weight than that! It would seem that her heart is showing signs of labouring during feeds and she just doesn’t have the strength to ‘eat enough’. So we are topping up her feeding with bottles now. Took a little trial and error but she drinks it well. We are hoping at her checkup next week she has put on at least 150-200g. This is the normal, though nothing about Chloe is normal I guess!

We had a cardiology checkup this week and the doctors are very happy with her heart and it’s current circulation. We also took her for a blood test. Our paediatrician would like us to test for something called ‘Smith-Lemli-Optiz Syndrome’. A simple blood test will be able to indicate whether she is absorbing enough cholesterol which in turn is a marker for this syndrome.  Obviously we are praying that she does not have a syndrome and the blood test was a waste of time!

Chloe seems to think that the echo is a massage and falls asleep. What a good girl!

It’s not as bad as it looks… her little feet bandaged after the blood test.

Apart from the tests we’ve done and some little excursions out, she is doing really well. Mike was super excited to take her for her first Santa photo this Christmas. She is also developing at a normal rate too. She seems to know our voices and when she is awake and alert she looks around to find us when we talk! All very good signs.

Surgery is scheduled.

Our first Christmas as parents is fast approaching! It’s surreal and hard to believe that Chloe has been ‘out’ now for just over two weeks. She’s still so tiny, approaching 3kgs (she may have reached it already) and nothing we have for her fits! Even 0000 doesn’t fit, it’s too big! Lucky it’s summer time so it’s warm and the necessity of lots of snuggly clothes isn’t an issue.

We have seen a paediatrician on the Gold Coast last week who knows about her heart condition and is confident that he can ‘follow’ her progress. He actually phoned the other day and asked if we would get Chloe a blood test to test for a syndrome he has been researching. I’m putting it off, I don’t want to see her scream being jabbed with a needle and I’m not really interested in hearing a positive result! But we will get it done, and we are believing and hoping the test will be negative.

Mum took Chloe and I to the Mater yesterday for a meeting with the surgeon who will do her first surgery. He is a lovely man, and the director of Paediatric Cardiac surgeries there. He is confident with her surgery but pulls no punches. Here’s a run down of what will happen…

The surgery is called Pulmonary Banding. It basically puts a band around the pulmonary artery to regulate the flow of blood to the lungs. Chloe’s artery is quite normal to big, so the danger is the blood will be too much for her little lungs, and when there is too much the heart gets laboured and she will start to show signs of heart failure. The key is to regulate the flow just right. So Dr Alphonso (or Nelson as he said to call him) will place the band on, while her heart is beating, and then leave her chest open for one day. This way he can make sure the blood flow is correct or he can adjust it to what she needs. She will spend this time in the Intensive Care unit and when he is happy with the surgery he will close her up there.

I say this all quite ‘matter of fact’ because if I think about it too much, it’s quite upsetting. Especially when you look at her, how little she is, and how ‘normal’ she appears to be. It’s very scary. I’m glad in a way that she has no idea what is coming and that she will never remember it. It is a risky surgery as it doesn’t fix the underlying issue of her underdeveloped heart, but the success rate is 90-95%.

There are a few other risks:

• the very real possibility of infection
• her kidneys may shut down briefly
• the use of bypass (hopefully it won’t be necessary)
• blood transfusion.

Our friends out there who are praying – please pray that she will avoid any ‘nasties’ listed and that she will sail through this surgery and surprise all the doctors. It’s scheduled so far for the 15 January, but there is a possibility that her cardiologist may want it sooner. We see him on 20 December for a check up and another echocardiogram.

In other news, Mike is again job hunting. It’s been a rough time since he had pneumonia in May to July, the redundancy and then he got another contract. Unfortunately, last week, the position he had ended due to the person who previously did the job wanting to return! Very underhanded and not at all ideal. As I write this he is at another job interview, so we are hoping this turns into something secure.

I’m still recovering from the c section and now it turns out that Mike will need surgery early in the new year too! When it rains, it pours.

All that aside, we have so much to be thankful for. As Christmas approaches, one of our wishes is coming true…having Chloe with us to celebrate our first Christmas as parents. With her at home, and hopefully not in hospital. She is doing so well and is so stable that it’s a huge blessing as well. We continue to pray that she will get fatter (!!) and stronger as her surgery approaches.

While I was thinking about the things that Mike and I are both afraid of, I read a devotion about fears. According to what I was reading there are 365 references in the Bible to not being afraid! One for each day of the year. It reminded me that God walks along side us and He is in control. At times we are still so angry and sad about her heart and what she has to go through, but in the end we have only our faith in God to trust in, which is far better than delving into the fears about what is coming. I keep reminding Mike to just ‘live in the moment’ and soak up all Chloe has right now. This is all we can do and take one day at a time. I’m biased I guess, but she’s pretty cute and it’s easy to sit and stare at her, I even love looking at her little feet and webbed toes! A little reminder that her imperfections make her perfect in every way.

 

Mike and I attempted to do Chloe’s footprints today! She was not impressed.

An answer to prayers…

I’m sitting on our balcony drinking a cup of tea enjoying the morning, the birds are chirping in the trees near our house. It’s very peaceful…FOR NOW! Yes, that’s right, we are home. Mike and I brought Chloe home on Saturday afternoon. She slept beautifully in the car and both Mike and I practically cried all the way home (it’s a one hour drive) as we only ever hoped and prayed that this day would arrive.

I’ve spoken a lot about God giving us the endurance to ‘run the race’… but I haven’t mentioned too much the power of prayer. The Bible says that we should bring out requests to God, that He will supply our needs. He says to ask and it will be given to us.

I don’t know if you would call what Mike and I did as ‘asking’, more begging if you like. Since the diagnosis we begged God that we would see her delivered safe and sound, which happened. We begged God that she would do well in hospital, and she exceeded our expectations and we hoped and prayed that we would use the carseat, the monitor, the cot, the clothes…the list goes on! All the usual things that new parents are excited about, we are too.

It’s overwhelming to know how many people near and far prayed for her safe arrival and how much God exceeded what we asked for. She only spent less than 48 hours in NICU, and we were told that she didn’t really even need to be there! It’s a good reminder that sometimes we box God in to the limitations of this world when He doesn’t live by those standards.

We only continue to thank God for her life and that we are blessed with her. And we continue to pray that she will get bigger and stronger as we head towards her first operation, which could be in about 6 weeks, we aren’t sure. That’s another hurdle I try, and Mike tries not to think about too much. We just want to enjoy her now, even at 4am when she isn’t asleep!

So here’s a few chuckles from our first parent diary! I think I’m up to about 5 or 6 attempts at putting a nappy on backwards and Mike is losing the battle with nappy changes. Chloe loves to ‘do her business’ just as you are swapping out the old for the new! A few ‘costume’ changes in the first day, as Mike would call it! All these things are just great reminders of how she acts like nothing is wrong!

For the future, we need to see a geneticist, to see if any of her heart problems, and short bones (and we have since found out she has no coccyx and a couple of webbed toes) are connected to a bigger picture. The hospital have been very helpful and the doctors are amazing. She had two more echocardiograms on her heart in hospital and the doctors are amazed at how strong it pumps. They are happy with her oxygen SATs which are in the 90s, just like a normal person! All in all, an amazing answer to prayers.