Monday, August 5, 2013

Nate's first overseas holiday

After the stress and challenges of the last few weeks (wait make that 21 weeks!), and a sleep deprived week with Nate in hospital adjusting to his Cpap, Robin and I really really really (did I mention really?) needed a break away.

My parents were just amazing. They arranged for the three of us to come to Waiheke for a long weekend, and talk about wow!

I arrived on the car ferry with Nate on the Friday morning with a car full of Nate stuff. Nate's first holiday and first jaunt overseas! As I pulled into the driveway I was met by two very eager grandparents who promptly whisked Nate away and upstairs to Skype Grandy (my father's Dad). I was left to unpack the car of all the stuff, although I think I did get a brief 'hello' first?! :-)

Robin arrived on the ferry after work that night. We were both exhausted but just so thankful to be away from our very small, crammed rental house, and all the challenges of the prior week.

Nate had a cot and mattress all set up for him, the house was spick and span and ready for baby stuff to take over (which it did :-)), the fridge was full of wine and yummy food, Dad's home brew was waiting for Robin to sample, the weather was SO good with sunny days, AND my folks had arranged for us to have a dinner out on Saturday sans Nate! What luxury!

The stress levels dropped markedly. Nate was absolutely doted on :-). And as you can see from the below, he was well and truly in his element, charming everyone....

One happy camper :-)
Chatting with Froggie and Grandaddy!

Sunny weather, Winnie the Pooh outfit comes on (courtesy of Uncle Craig!)

His repetitive tummy time drill didn't stop over our holiday weekend though - only now he had four people excitedly shrieking encouragement at him! The little man wasn't sure who to look at first :-)

Chatting to the black & white lady!

Nate also introduced Granny and Grandaddy to Ni Hao while we were there - a programme on Nick Jr TV channel which he just adores. Obviously that isn't the character's actual name (its actually 'hello' in Chinese), but that's what Robin and I have named her. Nate even recognises her picture on a mobile phone - causes great excitement and lots of leg pedalling! Now if only the sight of his cpap face mask would cause the same excitement.....

We arrived home feeling refreshed and reinvigorated. Disappointing to come back into our rental, but hopefully we can move back into our home in 10-12weeks time (touch wood!), and into an environment that doesn't add to our stress levels.

Nate attended his first developmental playgroup this week too, a free service for ex-NICU babies that runs on occasion. Granny and I couldn't believe his reaction - he was just so vocal with both babies and Mums, causing one mum to accuse him of being an absolute flirt :-). His muscle strength was (and always will be) his biggest challenge, but his motivation to lift his head was so strong. He lay face to face with baby Ruby, and squealed with excitement while gripping her hands and 'talking' to her. She was pretty non-plussed so he may have to work on his 'smooth talk'! Days like that are just so rewarding - inspite of everything, our little man makes SUCH an effort :-)

Wearing Granny's latest masterpiece!
My new threads from Daddy's Aunt Jean and Uncle David!
Enamoured with his Jemima :-)

 

Tuesday, July 30, 2013

The Check Ups begin

While we waited for the Starship appointments to begin, and a VNT (Visiting Neuro Therapist) from the Child Development Team to be allocated, we focused on starting what we could with Nate developmentally. Researching the other 100 odd T9M'ers overseas, we could see that when early intervention was applied, the results over time seemed to be much much more positive. Unfortunately with resource delays and a lack of funding in NZ, that approach won't be on the cards for Nate to anywhere near the same degree :-(.

However we're obviously committed to doing everything we can to help him, and so we've started to look at what else we can do for him in NZ, both now and in the future. It's more than a little daunting, just due to the sheer financial cost and time involved, but if it means our little man can walk, talk and have a better quality of life, then it's all going to be so worth it :-).

And so for now, we read to him, sing to him, chat with him, spend loads of time doing tummy time, and encouraging him to hold his head up on his own. We have started to see some really positive signs emerging, - his communication and socialisation skills are definitely emerging (quite the social butterfly!), and while his physical movements are definitely his greatest challenge and slow in coming, there has been improvement none the less :-).

Working on that neck strength!
Learning to lift my arms up!

Side lying and chatting to the black and white pictures :-)

And not long after, Starship swung into action on the medical front.

First up, we were called in for an ultrasound on Nate's kidneys and on his clicky hip. Both are relatively common issues with T9M. There was only positive news on that front - his hip had already come right on its own, and only one kidney showed some very minor abnormalities. The only thing we were going to have to watch for on that front would be urinary tract infections. We were told that while they would re-scan over the months/years to come, no further action was needed now :-).

We were already underway with Hearing, having sat (slept?!) through a number of hearing tests. We know that at some point we will be called back in for a hearing aid to be fitted for Nate's right ear. However given that he turns to noises now and communicates, this doesn't seem to be too much of an issue for him.

We were then called in to see the ENT Doctor (Ear, Nose, Throat). She apologised for the delay in calling us in from the waiting room, remarking that Nate had quite a case history to read. I took that to mean the reading around the rare diagnosis, as he certainly doesn't have a lot of hospital notes.... yet :-(.

That appointment indicated the presence of silent reflux (which we already knew and were already giving Nate treatment for), but a quick check of his throat revealed no visible abnormalities. We mentioned Nate's past snoring and occasional heavy breathing to this doctor, which was something we had previously told the NICU Homecare team about weeks earlier and they had run an at-home oximetry test. Apparently that test had showed some abnormalities that are not uncommon with premature newborns and even babies around 12weeks, but become less common as babies get older, as most should grow out of it. As a result we were soon to be be referred to the Respiratory Team to investigate that. The ENT doctor then arranged for a further two follow up at-home oximetries be run before we saw the Respiratory Doctor, in case things had changed over time with Nate. (For those that don't know, a pulse oximetry attaches to your toe or finger, and measures the oxygen saturation while you are sleeping. Try keeping that on a moving baby who feeds, plays and nappy changes about every three hours. Hhhmm yes).

Not long after that, I had a call from the Respiratory Doctor. He had reviewed the oximetries, and felt that rather than wait for our appointment (scheduled for the middle of August), where he would likely then arrange for us to come back in for an overnight sleep study, that we should just arrange that now. It was a Tuesday, and he suggested we come in on the Thursday. He said he'd prefer not to wait. Naturally we agreed.

And so on Thursday at 1pm we duly checked in to Starship. Talk about timing. Just a few days before the move to the new ward. The old ward was pretty ick to put it mildly!

The respiratory team arrived and began to set Nate up for the sleep study. It involves being covered in wire attachments that have to stay on all night. There are LOTS of them, and it took well over an hour to do. Nate was just SO affable throughout the whole thing - smiling and chatting up a storm - as they stuck bubble-gum like stuff in his hair and over his body to stick the attachments to.

Wired but laughing!
Rigged up ready to go
Having a cuddle with mum

Unfortunately the overnight sleep study didn't go so well - Nate has what is called periodic breathing overnight, in addition to having to work a bit harder to breathe when sleeping :-(.

As a result, Nate's doctor felt that he really needed to be on Cpap when he slept, and an apnea monitor. Cpap is short for 'continuous positive airway pressure', which basically ensures his airway is unobstructed through air pressure, which makes it easier for Nate to breathe over the top of this - so it doesn't breathe for him, just takes the work out of it.

I must admit that first night/second day was pretty taxing - not a lot of sleep and then some less-than-ideal news the next day. Dad came in to support me during the day while they were teaching me about the Cpap machine. I kept it together, but I think only just.

Nate, Robin and I then spent the next three days and nights in hospital getting Nate (and us) used to using a Cpap mask and getting the right pressure set for Nate - not easy!!! Robin had one night where he paced the hospital ward for a couple of hours with a very upset wee man :-(. Luckily we had some visitors over those days to keep us company - Granny, Auntie Chris and Cousin-in-law Claire, and Nate's big sisters Mia and Ruby - which was a welcome relief :-).

Nate also enjoyed showing his sisters his latest trick - rolling from his side to his back. He'd give a huge grin each time as he performed for them! As a result the excitement in his hospital room was very loud - I am sure the neighbours thought we were absolutely bonkers getting so excited over something so small :-)

Granny & Nate in Nate's hospital room
Nate with his new green frog from his sisters :-)

The end result? Now when Nate sleeps, he uses a Cpap mask and an apnea monitor, which looks like the photo below. The pads on his face are to help him get used to it - the mask is a little bit like getting new shoes, you have to break it in.

Our little man is doing a grand job trying to get used to it - can't be nice having that thing approaching your face just as you start to drift off into happy slumber. But he is just a trooper through and through :-).

Hopefully he will grow out of needing this, as it could well be to do with his hypotonia or low muscle tone, which should strengthen over time. But regardless we will now get referred back to the ENT team, in case it is some sort of blockage in his airway that needs to be cleared. And he will need his tonsils out in time too. So more appointments to come on that front.....

 

Tuesday, July 2, 2013

Immediately post D-day

The next few days were a blur. In fact the next two weeks were a blur.

Mum and Dad came around the next day, once Mum was cleared to leave hospital. We all had a cry. We were absolutely devastated. And disbelieving. Nate was so healthy and doing so well - growing well, and starting to hit many of his milestones. It just didn't seem possible.

For us all, the next week or so was incredibly challenging.

For me personally, those weeks were full of thoughts, which I have since heard are absolutely typical in such a situation, but were incredibly disconcerting at the time. I was full of 'what ifs', 'what nows' and 'why us'. Platitudes of 'these things happen for a reason', 'you don't get more than you can handle' and 'Nate was meant to find us', seemed complete rubbish. I was angry, devastated, and I was grieving.

At first I spent hours holding, cuddling, feeding and talking to Nate, just basically willing it not to be. I couldn't stop thinking of the things that he/we might not have together in life. I'm not sure how many times I cried those first two weeks, but it was a lot.

And then I spent literally hours on the Internet researching chromosomal disorders, T9M, and every medical symptom and term that I came across along the way. I have become an 'expert' on stuff I never cared to know about - hypotonia, scoliosis, food pegs, kidney dilutions, Cpap etc etc. I found and joined a variety of closed Facebook groups globally and within NZ, and trawled through post after post to learn as much as I could. I found the other two families in New Zealand and made contact. One told me it would get worse before it got better. That didn't seem possible either. I read blogs of people who experienced similar shock diagnoses on their kids. I found poems that talked of the challenges for parents of special needs kids (see Welcome to Holland, and Getting out of Amsterdam Airport references below). I found articles on Huffington Post written by mums and dads whose children were living with a variety of disorders and the impact on their kids, themselves and their families. They were concerning. I hounded the hospital to bring our appointments forward. I hounded the Child Development Team for help. Basically, I sought to get some control over a situation that felt entirely out of control.

After two weeks had passed, I had it more together. For me, knowledge made it that bit easier.

To be fair, Robin had adjusted more quickly. He had been a rock right from Nate's early arrival, through all the challenges of NICU and Nate's growth issues, and was even more so in this week. His mantra was you can only control the controllable, and that there was no point spending time on 'what ifs'.

At that stage, only my parents and Robin's Dad Roy, knew - they were so supportive, and so absolutely committed to Nate and to us.

Around that time we made the decision to tell our siblings, all of whom live in the UK. It had to be email, as it was still just to hard to talk about. Just too raw. And once that was done, things started to get a little bit easier again. While they are all a long way away, we had their support.

Not long after that, we saw the Genetics Team, in an appointment that had been brought forward for us. They empathetically told us what we already knew, referring us to the Unique article, and to the fact there were two other families in NZ. So no magic chromosome remover there.

Then around mid-July we saw our Developmental Paediatrician, Dr Rosie Marks. By then we were prepared. Now some of the things we had seen with Nate earlier on, seemed linked. These things were by no means exclusive to a T9M diagnosis, but fitted.....his prematurity, the fact he was IUGR, his low birth weight, the hearing loss in one ear, a clicky hip, undescended testes, and his poor feeding.

I had a copy of the Unique article for Dr Marks and had made a list of every possible symptom of T9M, what we knew of Nate, and what action was now needed to check further. For example, some T9M children have obvious brain abnormalities, but Nate had had a recent MRI which had given an all-clear, so no action was needed there. However we didn't know about his heart, or his lungs, or his kidneys....and so on and so on.

Dr Marks was great - she took the list, had a read of the article, and has since set about making it happen for us. Over the next few months Nate will be checked out every which way possible. And then we will know exactly where we stand. At least medically. Developmentally there is no way of knowing - all we can do as a family is to do all that we can to help him to reach his very best potential. And that is exactly what we intend to do.

Somewhere along the way, we heard of a NZ photographer referring to kids with extra genetic material as "superheroes". Taking photographic images that showed these gorgeous wee ones at their best. A positive spin on the 'my kid has more chromosomes than your kid' (nah-nah-nahnah-nah :-)). It resonated with us.

Nate had proven himself to be SUCH a battler in making it this far - he had stopped growing in the womb at 30weeks and was struggling prior to the emergency c-section at 33weeks, he had battled low platelets since birth, had struggled to feed/grow for about 15 weeks, struggling with what we later found out was hypotonia (weak suck), and yet STILL managing to grow. He was now hitting quite a few of his developmental milestones. He was smiling, chatting, recognising faces, and fast becoming a real little character. Our little man is absolutely a superhero :-)

This blog will tell Nate's journey - of a superhero called Nate-star......

Nate-star :-)
Bib courtesy of the Normans

Welcome to Holland http://www.our-kids.org/Archives/Holland.bhtml

Amsterdam International Airport http://www.undiagnosed.org.uk/archives/512

 

Tuesday, June 18, 2013

Tuesday the 18th June 2013

Out of the blue, I got a text from Wendy our Homecare Nurse from NICU, who had discharged us the week prior. We had got to know Wendy over our 12 weeks with both NICU and Homecare, and we enjoyed her visits with us. Wendy asked if we were still coming in the next day (Tuesday) to meet with Doctor Frank Bloomfield, one of the NICU Paediatricians. We were meant to have a 'discharge interview' with Frank and pick up a final report for Nate's GP, so we had been expecting this appointment to happen at some stage.

I text back and said that no we weren't, because the previous Friday the hospital had rung and cancelled that appointment. They had re-confirmed an appointment time for early August instead, and also told us that Frank had referred us to a different doctor for this. We hadn't thought anything of it at the time, other than it was annoying that it was now scheduled for a time when we would both be back at work. However given Nate had next to no issues to follow up with a GP on (a clicky hip that would likely soon right itself, hearing loss that we already had a plan around, and an undescended testes that should again right itself), we weren't concerned on the delay.

Wendy text me back and said that no that was a mistake, and Frank was still expecting us to see us. She specifically asked that I make sure Robin was coming too. Knowing Wendy, I knew straight away that something else must be up.

That night wasn't good. Both Robin and I were concerned, but we had no idea what to expect.

We arranged to meet at Starship shortly before lunch. It turned out to be a very short meeting. Frank was upfront in letting us know that a test that had been run some weeks prior (back when Nate had had his ultrasound, cat scan and MRI), had now come back. It was a genetics test. The test had revealed that Nate had an extremely rare chromosomal condition. So rare in fact, that only about 100 cases were known about globally. Nate had been diagnosed with Trisomy 9 Mosaicism (T9M). We were shocked, and had little comprehension of what he was saying.

Frank advised us that because it was so rare that he had had to go on to the Internet to get an understanding himself, and that while he would try to answer any questions we had, he had already referred us to the Genetics Team (the upcoming August appointment) who would be much better placed to answer any questions that we might have.

He briefly explained that everyone had 46 chromosomes, a pair of each chromosome, numbering from 1 to 23. One from Mum, and one from Dad. In some instances, issues occurred in the first few days after conception - sometimes instead of 2 chromosomes there were 3, or sometimes there were duplications of genes within chromosomes, or deletion of genes within chromosomes. When the issue was around an extra third chromosome, it resulted in disorders like Trisomy 21 (the most common, and referred to as Downs Syndrome), Trisomy 18 (less common than DS, and known as Edwards Syndrome), and Trisomy 13 (again less common, and known as Patau Syndrome). In Nate's case, an issue had occurred with his pair of chromosome 9, whereby instead of having 2 chromosome 9s, Nate had in some cases 3 chromosome 9s. Hence the 'Trisomy 9' name. However his condition was so rare, that it didn't even have another name associated with it.

The extra chromosome 9 wasn't consistent throughout Nate though - only 27% of Nate (tested by blood) had 3 chromosome 9s, the other 73% had the correct 2 chromosome 9s. Hence the additional 'Mosaic' name. Full Trisomy 9s (ie non Mosaic) are not thought to survive the pregnancy or their first year of life.

Frank explained that not only was T9M extremely rare with only 100 known cases globally, it was also entirely random as to when or why it happens. Effectively we had just won a global lottery.

He asked us if we had any questions. We were shell-shocked. I felt sick.

Robin asked if the diagnosis was conclusive. It was.

I asked about life expectancy. Frank couldn't answer. He said that due to the mosaic aspect, it was impossible to know in advance how he would be affected, as the affected genes or cells would be somewhere within him, but unknown as to exactly where. Because of this, there were some individuals that were profoundly affected, while others were only mildly. The level of Mosaicism also had no bearing on impact, ie a child affected by 6% could be more affected than a child affected by 40%, it was all about where the genes/cells were. It would be a waiting game.

He told us that Nate would be looked after by a team at Starship - doctors specialising in all different areas, like heart, ear/nose/throat, and so on, as well as the Child Development Team - and all led by a Developmental Paediatrician who would be assigned to us. This team would check Nate out over the next few months (and ongoing), and form an action plan where needed.

He had the article that he had found on the Internet but was loathe to give it to us. He stressed it was only on 14 known and extreme cases, and that there were likely to be many more people out there with T9M in milder undiagnosed forms. I told him that I would find the article anyway, and he might as well give it to me. He did.

That afternoon and night was much much much worse.

I read the article. It was appalling. It was a medical article that had not one positive strand of hope to cling to within it. I sat at home while Robin was at work, and cried.

My Dad rang my phone late afternoon (almost unheard of), and I answered in tears. I struggled to get the message out, only for him to then tell me that Mum was in Hospital overnight due to her high blood pressure. It was spiking and they had admitted her out of concern. Really things couldn't have been a lot worse. I insisted he not tell Mum out of concern it would make her condition worse. We decided to hold off until the next day when they had her blood pressure under control.

I spent the night researching T9M. I found Unique in the UK, who specialise in rare chromosomal conditions. They had a 20page document on T9M that was based on about 60 known cases. It showed a wide spectrum of variation as to how the condition could show itself. While some things seemed to be common - such as poor feeding, and hypotonia (weak muscle tone) which resulted in both walking and talking challenges - other aspects were extremely varied. Some kids were profoundly affected. Others considerably less so.

The diagnosis was still completely unwanted. And at that stage not really believed, or even accepted by us. Absolutely devastating. But while the article was disturbing, it at least showed that there was some degree of hope.

http://www.rarechromo.org/information/Chromosome%20%209/Trisomy%209%20mosaicism%20FTNW.pdf

The most precious little man in the world

 

Sunday, June 16, 2013

Happy times! Maternity leave as it was intended!

With Nate starting to grow well, things soon became a lot more settled, and a lot less stressful. Now all we had to contend with was tiredness and the prem thing, all of which seemed entirely manageable.

Nate was now 12 weeks old, nasal tube-less, and loving his new bottle. And within a month, we soon had over 5weeks of week-on-week solid weight gain! While still small, he was tracking well on his growth curve. We were extremely pleased :-)


With this growth, Nate's energy levels were also increasing weekly, and he was starting to show his personality more and more. He was proving to be such a character, and a complete chatterbox!
Pretending to pedal!
Cheeky!
We started to do more and more things with Nate....reading him books, having big chats, going out for walks in the neighbourhood, and even going out together for a weekend brunch. With Granny babysitting, I even managed a couple of days back at work. This was finally maternity leave as it was supposed to be!
SO excited to read with Daddy!
Big smiles after a big chat!
En route somewhere....

We also started to have a few more visitors, and Nate proceeded to charm all with his cheeky smiles, his noisy chatter, and his social nosiness (although in these shots, he looks worn out with all the excitement!). We also sent lots of photos and regular 'Nate Updates' to our families overseas.

Hanging with the gramps!
Four generations of Ryans!
Nate and his big sister

Everyone was completely smitten with our gorgeous wee man, but no-one more so than Robin and I :-)

Nate's first Mohawk :-)
Our beautiful boy!

We started to interview potential nannies, while at the same time overseeing our house renovation which was starting to pick up pace - in this time we finalised the kitchen, the bathrooms, and the wooden floors. Exciting!

In fact things were going so well by now, that the NICU Homecare Team advised us that they were now discharging us. We looked forward to not having weekly nurse visits and even more time to ourselves, and thanked them for all of their support to date.

And then, all of a sudden, everything changed.

 

Sunday, June 2, 2013

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 :-)