9 weeks old…

It’s hard to believe that Chloe has reached 9 weeks old and already has one hospital visit and surgery behind her. As I write this she is sitting in the baby swing sort of ‘asleep’! I say that because she loves to not sleep during the day!

We’ve been home almost four weeks since the surgery. The only concern at this stage the doctors had was her feeding and weight gain. I convinced them that she could gain weight drinking from a bottle and that she didn’t need the ng tube. Across three days at hospital she steadily gained some weight so we were told to leave! Go home and be a normal family.

So she now weighs a grand total of almost 3.5kgs. She is even starting to fit some of the 0000 clothes we have!

She’s definitely started smiling every day and she loves to have a little conversation with herself, making little noises. I think she may let out a giggle soon.

So at the moment, all in all, she’s like a normal baby! Cries to be held, smiles, has some explosive nappies, doesn’t sleep when she should and overall just being a baby! Her scar looks incredible and is barely noticeable. Her recovery is awesome and hopefully she continues to go from strength to strength.

We still haven’t had one full week without a doctor visit but I guess that’s going to be her life. Here’s a little picture when I was playing photo shoot with her… don’t think she’s too impressed with the beanie!

Home sweet home!

Well after 15 days of sleeping on a bench seat at the hospital I finally got to go home! Of course so did Chloe and Mike.

The doctors have been waiting for her to turn a corner with weight gain, as they are more than happy with the outcome of the heart surgery. It would seem in the last three days she has steadily begun to gain weight, yesterday she weighed a whole 3019grams! More than she has ever weighed! I joked with the cardiologist about this and he sarcastically commented that she must be getting very difficult to carry around now that she weighs so much! I love a doctor with a great sense of humour.

So yesterday Chloe had an x-ray to check on any fluid build up (which can be a problem for heart kids) and it looked good. The doctor has prescribed Lasix, a medication to help keep the fluid build up away, it makes her pee more! Perhaps I should buy stocks in a nappy company. She only needs .3ml every day. Seems like such a little amount.

Since coming home though she has been very settled and is even showing more smiles! A good sign for her development. A trip out on Monday to check weight gain is on the cards, something that will need to be done at least twice a week until her review by the Cardiologist in 8 weeks. If the weight gain stops or slows, or if she loses weight, the doctors will need to put the nasogastric tube back in. I’m sending up many prayers that this won’t be necessary. At the moment I feel like I’m feeding her constantly!

Mike starts his new job on Monday, which is very exciting, so it will be time to settle down for a bit and hopefully feel like a ‘new’ family should! Sleep deprived and busy! The next surgery will be at around 4-6 months of age (She’s 6 weeks right now). This entirely depends on how she continues to progress. It also depends on how much she grows and how effective the pulmonary band is over the next coming months. I would love to think that we will have several uneventful months at home before we pack to head back for hospital.

As much as the last two weeks have been stressful and upsetting, we are now past it and there’s much to be grateful for. I read this quote on a friend’s facebook the other day..

Life is like a camera. Just focus on what is important and capture the good times, develop from the negatives and if things don’t work out, take another shot.

This is what we do right now. Concentrate on the smiles and all the joy that Chloe brings to those around her. It’s hard to believe all she’s been through as such a little baby, so resilient. On Monday her dressing comes off the wound and it can begin to heal. Both Mike and I are so thankful and grateful for all the prayers and messages we’ve received over the last couple of weeks.

Here’s Chloe relaxing at home in her pink bouncer. 

Smile interrupted

It’s hard to believe that this time last week Chloe was just coming out of her surgery. That was a dark day for all of us. One week has passed and although I’ve had days where I felt she wasn’t making any progress it seems as though slow and steady win the race.

Chloe left PICU on Friday to what they call close obs on the cardiac floor. She spent one night in the close observation unit and then we were moved to our own room on the cardiac wing.

I’ve missed updating the blog because its been very tiring! For all of us. Mike had his surgery, mum had hers and Chloe was putting hers behind her.

As it stands today the only thing she has left to do is prove she can feed well and put on weight. All her arterial lines and canulas are gone, the only thing left is her ng tube! I’m remaining positive that we will re establish feeding and that can go too!

She’s also not being monitored on her SATs anymore, I overheard the cardiologist saying ‘mum keeps looking at it and worrying about it being too high so we’ve turned it off.’ The doctors are pleased with her progress so far.

Not long before her surgery, around Christmas I was definite she was going to start smiling soon. I was sure she smiled at me on Christmas. I decided that this surgery interrupted her road to smiling but today she delighted a roomful of about 8 people, by giving one great big gummy smile right at the cardiologist (isn’t mummy supposed to get the first one?). So it seems she’s turning a corner.

I can’t believe how far she’s come in a week. God has really looked after her. He must’ve been inundated with prayers.

After nearly 12 days in hospital Chloe got some fresh air! The doctor said we could go out in the pram for a short time, after I asked if we could! So she got fed and changed and we went over the road where we got some ‘normal’ food and coffee. Yum! And then back to hospital!

So the next part is to get feeding, put on weight and then the doctor will let us go home!

ICU… You see me

We are now a few days post surgery. Chloe is doing pretty well with just the little scare of necrotising entero colitis. The doctors are still monitoring this but they are happy with where she is at.

In fact, they are going to try some feeds today… 1ml per hour! Doesn’t seem much to us but its a lot to her probably. She wasn’t tolerating food before surgery very well and the doctors tell me this is due to her being in heart failure. So if she goes well with feeds today it will be a good sign.

She is a lot more settled today. Yesterday was a very grumpy day after they extubated her. I would’ve been grumpy too. She took a while to settle.

But just to make things even harder, Mike had surgery yesterday. It was supposed to be an easy day surgery but unfortunately the pain after was a bit much and he was sick quite a lot after the anaesthetic. So day surgery has turned into two night stay in hospital. And no, they aren’t in the same hospital! However, my mum is also in hospital getting a heart thing done so mum and mike can visit each other. It’s a pretty full on time for our family! I think Chloe is probably doing the best!

The surgeons continue to be happy with the pulmonary band so we hope that it will help keep her growing until her next surgery. This could be in about 4-6 months. It depends on how she is going.

Yesterday I had the first cuddle in three days! Here’s a pic of awake Chloe…

Chloe had a wobbly!

It’s been a pretty full on four or five days for our little family. Chloe is now more than 24 hours post surgery. She had a little ‘wobble’ overnight as the doctors call it.

In my family we always called a tantrum a wobbly!! In Mike’s family they called jelly a Mr Wobbly….
But the doctors today called what happened last night a ‘wobbly’. Chloe had a little unstable moment where the doctors are a bit concerned that she might have necrotising entero colitis. Although if she has they’ve caught it early and she has remained stable ever since. In essence it just means her blood flow was compromised to her bowel for a while. They are administering antibiotics and stopped her feeds to give her tummy a chance to get better. So she now has nutrition going straight into her veins. On the upside that will probably fatten her up a bit!

Mike and I have spent a lot of time with her today, and she definitely responds to our voices. She grabs our fingers and is slowly waking up. It’s funny how even with all the tubes all I see is her… And I still think she’s adorable.

Yesterday was a tough day. There is no doubt that I questioned God and at times had doubts about His faithfulness and protection. But the amount of prayers and texts and messages we received helped to restore my faith in what God can do. I know that He watches over our daughter and that with the amount of people praying there is no doubt in my mind that God is right there with us and her. We received this prayer from a friend which we wanted to share.

Lord our heavenly father we lift Chloe, Tamarra & Mike up to you, we ask that you wrap them in your love, let them feel your presence, give them strength & relieve them of their worry as they know they are the children of the most high God.
We pray that little Chloe feel your comfort & that her little body is receptive to the operation & treatment.
We ask Lord that you guide the surgeons hands & thankyou for the chorus of Angels that will be present in the operating theatre exhalting your name & witnesses to the miracle of little Chloe’s strength.
Amen

This pic is day two!! Chloe is enjoying a beautiful quilt made by a group of volunteers who donate to the sick bubs in PICU. It’s very pretty and has babushkas on it! Quite fitting if you know Mike’s family. She’s also enjoying a few home comforts, her giraffe and snuggly pink bear.