A growth challenge :-(

Over the next four weeks at home (Nate was between 8-12weeks old, and had been home since he was 6weeks old), we focused purely on growing.

The early period of this time, was characterised by a challenging feeding schedule that consisted of 30mins breast feeding, followed by a nasal tube top-up which took between 20-30mins, after which I would go and express milk for 20-30mins for future tube top-ups. Every 3 hours the whole process then had to be repeated again. It was exhausting! There was little time for us as parents for anything else, including sleeping, eating and showering.

The pressure was also intense. Every week the NICU Homecare Team, would come and we would wait with baited breath to see if our boy was holding his own. Talk about stressful!

However it was working and Nate began to make weekly weight gains, started to have more energy, and was able to spend a little more time awake with us :-)

Multi-tasking! Feeding AND reading!

Watching footy with Daddy

Well not always awake......but there physically!

My first Mothers Day came and went in this time, and Nate splashed out on a huge bunch of flowers for me :-). Life seemed to be getting slowly sweeter, even with the lengthy feeding regime.....

Hanging with my gorgeous big sisters

Within a couple of weeks of being at home, we were then called back into Starship to follow up on Nate's failed hearing screening. Unfortunately Nate failed the repeated test, so Robin and I were called in yet again for two more comprehensive tests. If you've never taken a baby for a hearing test, then you're missing quite an experience! The baby needs to sleep through the whole thing, and so you are put in a very small, very dark, and very quiet room, while electrodes are placed over the babies head to measure the responses to sounds. Just the attaching of the electrodes takes a good twenty minutes alone. Both Robin and I sat beside Nate, struggling desperately to keep our eyes open throughout these hour long appointments :-). How people work day-in day-out in those offices, neither of us could understand.....

The outcome of these tests was that Nate was found to have a permanent hearing loss in his right ear, an issue right inside the inner ear. We were advised that he effectively had one and a half ears, and that while speech development would not be a problem, he would ultimately need a hearing aid as he would likely struggle with multiple voices in a setting like a daycare.

Naturally we were upset. What we had assumed was just a random fail (especially as Nate reacted to sounds at home, jumping and startling with noises just as any baby would), had turned into a conclusive outcome. That took some adjusting to - something that didn't fully come about, until after a later incident.

More cuddles with Mummy

Within this period, we returned to NICU for some check ups and tests, given that we were still under their care. We had had concerns over Nate's struggles with oral feeding and growth since we had come home, and so his paediatrician undertook a few tests to see if there was anything else going on such as an infection.

One particularly stressful day involved me taking Nate for an ultrasound of his head, which revealed a brain bleed. At that point, I was told that an 'investigation' into his brain 'injuries' would be undertaken, and that I would be unable to leave the hospital as there was a suspected shaking of the baby. You can imagine a sleep-deprived, stressed-out, new mum's reaction - distraught does not even begin to describe it.

Robin came in from work straight away, and Nate was then taken for a cat scan which showed that the brain bleed was in fact an old bleed (our paediatrician told us this was likely to have happened when he was in the womb, and that this was not uncommon), which indicated there was no 'shaken baby' incident. A follow up brain MRI a few days later also showed Nate's brain to be within the realms of normal, bar some very minor observations, and of no risk of ramifications from the past brain bleed, or any risk of future brain bleeds.

I can't even do justice to how horrific that day was. We were hugely relieved to put it mildly. And now incredibly thankful that all we had to contend with was a moderate hearing loss in one ear.

Nate's 'glad your noggin is ok' outfit from Granny and Grandaddy!

 

Thankful that there was nothing else going on, we focused on keeping Nate growing. However we also wanted to make sure that we didn't have to rely on the nasal tube to do this in the mid to long term. Nate needed to come back to full oral feeds, and to maintain the benefits of breast milk through breast feeding (especially as expressing breast milk long-term for nasal tube feeds, was unlikely to be sustainable over time).

Because of this, we started to slowly reduce the volume within each nasal tube top-up feed, encouraging him to breast feed more. This was a fine balance, as we attempted to help him gain weight and build his strength for breast feeding, while at the same time weaning the nasal feeding out.

It was over this time that we discovered a different bottle - one that was designed for babies with a weak suck, which enabled babies to feed with a lesser degree of energy. We gave it a shot, and Nate loved it! All of a sudden Nate started to take larger feeds, and we started to see a marked difference in his weight.

Not long after this, we moved to fully bottle-feeding expressed breast milk, and over time we shifted to a combination of formula and breast milk feeds all via his bottle. We were so relieved to have got Nate's growth fully under control :-)

 

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