3 weeks old

Little Tahnee is already 3 weeks old (and 1 day)! Time seems to be flying in one sense, but going slow in another. She continues to do well and make progress :)

Today I was able to get to the hospital before the doctors had done their daily wad round and assessment of Tahnee. When they arrived at her cot, they asked for an update and I was able to report that she had had minimal aspirates overnight and she was also taking well to the 5mls of milk she was getting every 4 hours (in addition to her continuous milk feed). These small amounts of milk are to encourage the suck&swallow rhythm. Tahnee is also having regular wet and dirty nappies as well, which indicate her bowels are working well.

The doctors then conferred and decided that since she was almost receiving the correct volume of continuous milk flow for her body weight and was tolerating it well, that they would start to wean her off the continuous and switch to getting feeds every 2 hours instead!! This is another step in the right direction :) Basically it means that over the next 24 hours they will wean her and start giving her feeds through her nasal gastric tube. The doctors also want us to alternate her method of feeding - one suck feed from either a bottle or breast and one tube feed. The reason they aren't going straight to full suck feeds is that it would require too much energy and she would start to burn fat and therefore lose weight.

Now, as a result of coming off her continuous feeds, Tahnee no longer needs to receive fats and fluids through her long line (IV in her arm), so that should have been taken out this afternoon :) Now she is down to 2 tubes: the nasal gastric in her nose and a sats monitor to measure her oxygen levels which is a probe attached to her foot. Almost tube free  :)

Feedback from the doctors has all been positive and Tahnee continues to make all the right steps towards coming home. Her challenge still remains to get to full breast/bottle feeds before being discharged and allowed to come home!!

p.s. Lucas LOVES seeing photos of Tahnee and saying her name...its very cute :) Whenever he is asked where she is, he turns to point at a gorgeous scrapbooked, framed photo that was kindly made as a surprise for me by my sister-in-law Rachel and is hanging on our wall.

Big Weekend

It was a big weekend for little Tahnee! On Saturday, I spent the morning with her at the hospital while Chris and his dad took Lucas to the woodshow. When i arrived at the hospital I was told that Tahnee's continuous milk feeds were being increase 1ml every 8 hours now (3ml/day). Then, while i was holding her, her surgeons came around on their hospital rounds and asked if she had begun suck feeding and said they would recommend that and another rate increase on the continuous milk feeds to the ward doctors. (Surgeons visit the babies they operate on while the ward doctors are on the ward all day). Anyway, we heard no changes were going to made to her feeding that day.

Then on Sunday when we arrived, our nurse told us that if I wanted to, then i could try and feed Tahnee her first proper suck feed from me!! Of course we were both excited as it means progress. The nurse also said that Tahnee was going up 2ml every 8 hours in her continuous feeds (6ml/day).

After going to express some milk first, I then sat down to feed Tahnee. It was a little strange at first, especially as she doesn't know how to work for her food! She got quite a large volume of milk in her mouth and refused to swallow it...so it came all back out again....and down my shirt and onto the chair! Then the nurse suggested i try a shield. That seemed to help a little as Tahnee did a few small sucks and swallows...but at least she was beginning to realise she needed to swallow! After a few more minutes we stopped as she was getting agitated. Chris and I then had nice snuggles until she decided that it was a good idea to projectile vomit yellow stuff (stomach acid we assume)! That meant no more attempts to breastfeed that day, but we are going to try again on Monday morning.

Just as we were preparing to leave we heard more news!! This time our nurse said that Tahnee was being moved from the HDU to the nursery...as they say on the ward "you move closer to the door then you go home"...and the nursery is 2 rooms closer to going home :) Naturally we stayed around to watch her being moved! Its all very exciting :)

Dressed in clothes

Tahnee's new bay in the nursery

Sleepy smiles

Face, Cot, Feeds & Clothes

On Wednesday we got to see ou beautiful baby girls' face properly for the first time :) This means she has been taken off her CPAP Ventilator and is able to breathe fully on her own!

Tahnee is also on a continuous milk feed (breastmilk), which has a purpose of getting her gut used to digesting food. She receives this via the green tube in her mouth (its now in her nose). She began this type of feeding on Tuesday and received 1ml each hour. On Wednesday this was increased to 2ml every hour and today it was upped again to 3ml, with the doctors saying they are considering upping it a mil twice a day! This is fantastic news, as they wouldnt increase the dose if she wasnt tolerating the milk.

Other big news includes the fact that she has been moved out of her warmer and into a cot! She still occupies the same spot in the High Dependency Unit (HDU) but we are able to have easier access to her and we are now allowed to pick her up and hold whenever we want, without needing permission or help from the nurse :)

She is also being dressed in clothes. Her tops are the pinafore type ones like the one used to hide her bowels (see previous posts). And yesterday she was also in pants and socks!

Each of these small baby steps means we are one step closer to taking her home :)

Selecton of her stuffed animals

Another Surprise Hamper

This afternoon I had a knock at the door and opened it to discover a friend with a HUGE hamper in her arms!!! When I had a chance to open the hamper I found out it was from a group of friends and it was full of things for myself, Chris, Tahnee and Lucas. This hamper included chocolates, blankets, clothes, a teddy bear, hair accessories, magazines, books and toy for Lucas, body washes and soaps, nappies, a wetbag, shoes and more :)

We are so grateful to our friends Bec, Cheree, Evelyn, Erin, Jono&Suzi and their families for their thoughtfulness in making us a hamper filled with many fantastic presents!

Surprise Present

I’m finding it very difficult to put into words our gratitude over the gifts we received over the weekend. Last Friday my mum and sister drove up from Albany. They walked into our house with their arms full. They had a large hamper and two other packages. We were a little confused about who they were from, as we hadn’t been expecting anything, let alone something so big.

Well…after opening the hamper and reading the card, we found out that the gifts were from a group of girls who I had gone to school with! They had thoughtfully put together a gift hamper with food, socks, toys and other items for us and Tahnee. They had also included a present for Lucas which included books and a toy. AND they had bought a gift just for me….a beautiful, silver Pandora bracelet!! We were completely and utterly surprised and grateful and we believe that the words “thank you” are just not adequate enough! But we don’t know what else or how else to say thank you to the girls for their thoughtful gifts….so Sharelle, Jody, Charlene, Tahlia, Amy, Alison and Talitha…a huge THANK YOU from Chris, Tamala, Lucas & Tahnee J.

From C to C

Our little Miss Tahnee has had a MASSIVE day! Firstly, on Thursday we were told that she would be extubated (tube removed from her mouth) and switched to a different ventilator sometime within the next 48 hours. So on Friday we excitedly went up to the hospital, only to be told by the doctors that her abdomen was still a little tight and they wanted to keep her on the same ventilator and would reevaluate in the morning. After speaking with the nurse before we left, she promised us that someone would call us in the morning and let us know what would be happening.

Well…at 930 this morning we were called and told they would be removing her tubes!!!! They asked if we wanted to be there, but we said to go ahead as we knew we wouldn’t be able to hold her straight away anyway. So when we got to the hospital about an hour later, we got to see her on a different ventilator referred to as CPAP…this ventilator helps to keep her lungs inflated but makes her do the breather work herself.

Upon arrival at the hospital we also found out that she had been completely weaned off her morphine!! Another huge accomplishment for our little cherub. With all this happening, the doctor told us it would be after lunch that we would get our very first cuddles (the 10 sec hold when she was born doesn’t count!). Needless to say it was a lllooonnnggg wait till we got the go ahead. We kept ourselves occupied by expressing, having, talking with Tahnee and having a bite to eat.

Finally it was time!!!! The moment we had been waiting for for the last 11 days…our very first cuddles. Chris graciously let me have the first hold. It was a little awkward at first, as she still has some tubes attached (for fats, fluids and food). However, it was such a special moment to hold her that I can’t describe it in words…so photos will have to do J.

with Mum

with Dad

Resting

Special CPAP dummy

So all up today, Tahnee was taken off her morphine, switched to CPAP and had her first parental cuddles! We can't wait for our next cuddle tomorrow. 

8 Days Old and 2nd surgery

Hi everyone,

Well it’s been a crazy 8 days since Tahnee was born! A lot has happened since her surgery last week Friday. Firstly, since then the doctors have slowly begun reducing her midazolam (sedative) levels and it was turned completely off on Monday.

At the same time the doctors were also reducing her morphine levels (a bit slower than the sedative though). Over last weekend she was receiving 20micrograms per kilo per hour, and everyday they reduced it, until yesterday when it was down to 5micrograms per kilo per hour! They decided not to reduce it further as she was scheduled for surgery.

The next big item of news that we heard on Monday and Tuesday was that her operation was being brought forward, depending how she went. Her next operation to put her bowel back inside her body and stitch her up was scheduled for Friday the 2^nd September. Each day the doctors do their rounds and would push a bit more of the bowel inside. Gravity also helped to move it down. The doctors were extremely impressed with how fast the bowel was moving that they moved the surgery to WEDNESDAY afternoon (yesterday)!!

Wednesday was a very interesting day. In the morning we were able to introduce ourselves to the parents of another baby in the NICU. We had heard the day before that their baby was also born with a diaphragmatic hernia! Its great being able to share this journey with someone who is going through exactly the same emotions at the same time. We can each be a support for the other. That baby also went for surgery yesterday afternoon, but we haven’t spoken with his parents since then.

Wednesday afternoon at around 230, Tahnee headed off for her second surgery in less than a week. We were told the whole procedure, including going under anaesthetic, would take about 3 hours. However, after only 2 hours the surgeon was back with great news. The operation was a success! The bowel went back inside very easily and there was enough skin to stitch the wound closed without needing another patch!

Within minutes of returning back to the ward, Tahnee had her eyes open and was very alert. The nurses upped her morphine levels due to her surgery (just in case she was in pain). And since then she has returned to her “stable” stats, although overnight her pain scores were very high so the nurses upped her morphine levels back up to 20mics.

After surgery - no more bag!

This morning on their rounds, the doctors dropped the morphine levels. Once they reach a certain level (unknown to us) they will remove the breathing tube in her nose. They will more than likely switch her onto a different ventilator that makes her do more of the work. They hope to do this, as well as remove other tubes over the next two days.

As for me and Chris, we are doing well under the circumstances. Just the usual complaint that all “new” parents have – lack of sleep!! Our bodies and minds are also adjusting to the conditions associated with the NICU. The room is very warm, so we need to remember to stay hydrated. Plus we are learning all the medical terms etc.

Lucas is also adjusting okay. It must be confusing for him to not have mum and dad around like normal. Thankfully he enjoys his days that he spends with a friend while we are at the hospital. However, he is starting to do little naughty things – for instance my brown tile laundry floor became white when he discovered the laundry detergent tub on the floor was accidentally left open!!

He also wants to do things that mum does – and a few times he wants to “help” get milk out for Tahnee. This “help” includes him expressing milk from himself and also helping me by pumping the trigger. It’s very cute!