Natalie's Feeding Tube Removed

Natalie had her feeding tube removed today. The community team determined that she is feeding well enough with the special bottles we are using that she no longer needs to be fed through a tube. So no more sticking it back to her face and trying to stop her pulling it out again. It is lovely to see her without it. She has now reached 2.420Kg (5lbs 5oz).

First trip into town

We took our first trip out by car with Natalie today, going shopping in Cambridge. This was really a practise run for Mum and Dad with the car seat and the baby sling to see how well we coped. Natalie slept through most of the trip, including walking round the shops with her in the sling. We bought her some nice clothes and a few other baby essentials, then headed back home before she needed her next feed.

In the car seat ready for her first trip out

Sleeping on Mum on the sofa after a hard days shopping

Comfortable Pillows

Mum has lots of pillows to prop herself up while feeding Natalie and cuddling her on the sofa. Natalie needs propping up too as she cannot support her head yet, and Mum's nursing pillow is perfect.

Natalie trying out Mum's nursing pillow

Family Visits

Dad returned to work yesterday, feeling a little tired due to lack of sleep for the past week. He arrived home to find Natalie and Mum both fast asleep on the sofa. Dad cooks dinner and after eating it Mum falls straight back to sleep. Dad puts everyone to bed around midnight.

Today some of the extended family came to visit. So Natalie had plenty of attention all day.

Natalie now weighs 2.260Kg (4lbs 15oz).

Natalie meets her cousin Willam aged 2 and a half, and her Aunty Sarah

Aunty Sarah, Natalie and Mum

Nana holding Natalie

Natalie gets some rest in the evening

Grandparents Visit for the Day

Natalie had a visit from her paternal Grandparents today, the first time they have seen her since she came out of hospital. She was a darling all day and did her full cutest baby in the world repertoire. Dad is returning to work tomorrow, but Natalie did not settle down until midnight, and then had us up again at 1.00am! So we had a very poor night and Dad was very tired the following morning!

Here is a picture Grandad took of Natalie in Dad's arms

Natalie asleep on the sofa

Our first whole week at home

Well we have had a whole week at home as a family now, and it has been lovely. No doctors and nurses organising us and telling us what to do. It was great having the care and support of the hospital staff during the past 5 weeks, but it was really nice to finally be able to start to find our feet on our own! Ginge (our cat) has adjusted surprisingly well to our new arrival, after ruling the roost for the past few years. Considering he hates noise and disturbance, we were a bit worried about how he would cope with a crying baby. But once he got over the shock of this new unexpected noise, he has already started to ignore it. Unless it gets really bad, and then he slopes off to another room for a lie down. I think we could learn a thing or two from him!

Mum is learning to eat lunch one handed!

Ginge is first in the queue for the nappy changing mat!

Wrapped Up

Natalie continues to gain weight. She now weighs 2.080Kg (4lbs 9oz). Because she is premature she gets comfort from being confined and held close, like she would be experiencing in the womb. So she loves being wrapped up in a fleece blanket and held. She doesn't like being out in the open or too much noise and movement.

Natalie all wrapped up, contented in her blanket.

Exhausted!

All this getting up all hours of the night has left Mum exhausted! She sleeps in front of the television when Natalie sleeps!

Another tube bites the dust

Natalie managed to pull out her feeding tube again in the night. Two nights at home and two tubes gone! We are getting to meet all the various members of the community team as we have had to call them out two days in a row.

Now we have Natalie home we are enjoying putting her into all the lovely outfits we have for her. In the hospital she mainly wore clothes from the SCBU as they had a large collection of tiny clothes. Most of the ones we have found ourselves, and all the lovely outfits friends and family have bought her were a bit too big until now.

At night Natalie sleeps in a Moses basket next to our bed. She seems to be sleeping pretty well between feeds which at least allows us a bit of sleep per 3 hour feeding cycle. Dad is a night owl while Mum is an early bird, so Dad does the evening shift while Mum gets a few hours sleep. Then Mum takes over in the small hours and lets Dad get some rest. Natalie just sleeps when she feels like it!

Natalie sleeping in her Moses basket

Natalie all dressed up in her fleece jacket

First Night at Home

Our first night all at home together as a new family. Natalie needs to be fed every 3 hours round the clock, so we had to find a couple more alarm clocks to wake us up at all the right times. Natalie pulled out her nasal feeding tube in the night, so we started the day having to phone the special care community team who came round first thing to fit a new one. Once that was sorted out we mainly did a lot of washing, being at home for more than a few hours for the first time in over a month! In the afternoon we decided to test the pram, and took Natalie for a walk round the village green. It was rather bumpy and we had to go very slowly to avoid bouncing Natalie around too much in her cosy all terrain transport. She slept soundly throughout the excursion, but I think the fresh air did us all some good.

Here is Natalie without a feeding tube coming out of her nose. I took this while I had the chance, before the community support team arrived to put in a replacement tube after she pulled the last one out during the night.

Natalie looks a bit lost in her carry cot. She is so tiny!

Mum with Natalie in the pram, out and about for the first time!

Natalie is all wrapped up as it was a cold day.

Natalie is at home!

We got to take Natalie home on Sunday night as planned! We strapped her into the car seat in the ward, and took her on a final tour to say goodbye to all the staff who had helped care for her over the past five and a half weeks. Then out to the car and into a big traffic jam! Eventually we got home only a little late for her next feed (she needs a feed every 3 hours at the moment, 24 hours a day). Natalie seemed quite unconcerned with the new experience of traveling by car. At home Mum and Dad celebrated with some champagne! Dad is spending the week at home with Natalie and Mum, getting used to a routine of changing her nappy, sterilised her feeding equipment, helping feed her, cuddling her to get her back to sleep, tidying up the kitchen, cooking Mum some dinner, changing Natalie's nappy again .... !

Strapped into the car seat ready to come home!

Mum and Natalie home at last!

Wrapped up on Mum's lap

Natalie with Dad and a glass of champagne

Natalie celebrating with Dad!

Coming Home Plans

This week has been a bit of a roller coaster ride to say the least. We seem to have been 'about two weeks' away from Natalie being possibly able to come home for some time now. So on Tuesday when the cleft palate team came to see Natalie, Mum discussed with them when we might be able to bring her home. They proposed an action plan as follows:

On Friday, Natalie moves onto the mother and baby ward, with Mum. They stay for two nights, and if feeding has gone well during that period then we should be able to take Natalie home on Sunday!

Then on the Thursday the consultant reviewed Natalie's progress and told Mum there was no way we would be going home on Sunday. Mum was very upset having had an end to the hospital stay in sight all week. Then she spoke to the cleft team again and it turns out that the consultant and the cleft team had not spoken to one another. So the consultant was advising based on criteria for a baby without a cleft palate, rather than on the recommendations of the cleft team! So now we were back on track to bring Natalie home on Sunday!

On Friday evening, Natalie was transferred into a mobile cot ready to be moved onto the ward, and Mum was re-admitted for the weekend to see how she got on feeding Natalie round the clock without the help of the special care unit staff.

Natalie now weighs 1.953Kg (4lbs 4oz).

Natalie in a cot ready to be transferred out of the special care unit onto the ward

Natalie puts on weight

Mum and Dad went out to see the main Cambridge city public firework display this evening, leaving Natalie in the care of the hospital staff. She had her weight checked again today and has now reached 4lbs!

Our 'big' little girl

Proud Mum

Breast feeding progress

For a few days Mum has been trying to get Natalie to breast feed, but we were unable to really tell whether she was getting any milk out. One of the midwives suggested trying latex nipple protectors (designed for breast feeding with sore cracked nipples). These would enable us to see if any milk was going in when Natalie latched on. So Dad went shopping to get some today, and Mum tried them in the afternoon. Success! Natalie was getting some milk, which cheered us both up and ended the weekend on a high.

Feeding by mouth successfully is one of the criteria we will need to meet before we can take Natalie home. She will still have a nasal feeding tube because she will get too tired taking all her feeds by mouth, but we need to be able to feed her if she pulls out her tube. Something she is become rather adept at!

It's not that her tube bothers her, she just likes to grab onto things

And that tube is just so handy to grab hold of and pull on!

Fireworks Display

Mum and Dad spent the afternoon at the hospital with Natalie, then had a parents 'night out'. Well we went outside into the hospital car park for the annual free hospital fireworks display anyway! Surrounded by a multi storey car park on one side, and tall hospital buildings on two others, the fireworks echoed fantastically. It was one of the loudest firework displays I have every been to. Several toddlers had to be taken away in tears after the first 30 seconds! We couldn't tell whether Natalie had heard the fireworks from inside the special care baby unit, but she soon settled down for the evening when we returned to see her afterwards.

Natalie alert after we got back in from the fireworks display

But before long she was sleeping peacefully again

Dad gives Natalie a Cup Feed

Dad had his first lesson in cup feeding Natalie this evening. This is a technique to allow her to sip milk from a cup rather than us feeding her via the tube in her nose directly to her stomach. Now we have found out about her cleft, we have been advised she will get too tired trying to get enough milk via breast feeding, so cup feeding is an alternative. You have to tip the cup at the same rate she sips from it, or she chokes on it. Tricky as she tends to try and grab the cup with both hands. Dad managed to get most of the milk into her mouth rather than down her chin, and was then taught how to burb her to get all the air out she takes in with the milk this way.

Natalie now weighs 1.749Kg (3lbs 14oz).

Contented Natalie after her feed