Support Network

Yesterday it was exactly 6 months ago that we first heard the diagnosis about Tahnee's diaphragmatic hernia (blogged about here). During that time we have had a lot of support from a varied group of people, all who we would like to publicly thank.

When you read the following, keep in mind that different people offer support in different ways. Someone who has experienced CDH understands and supports differently to someone who has shared a similar hospital experience of being in an NICU and from someone who is a family member or close friend. In the same way, a mum understands and supports a fellow mum differently than a male relative would.

• Our families – they shared our trials and happiness and were with us every step of the way through hugs, tears, emails, phone calls and meals.
  
• Mum Cooper and Mum Vander Linden– for looking after Lucas while we went to our doctor appointments and were at PMH and for taking time off work to do so.
  
• Natasha, Jessica, Rachel and Julianne – for also looking after Lucas while we went to appointments and when Tahnee was at PMH.
  
• Rachel – for taking the time to come and help us out by cleaning our house. It was awesome coming home to a nice clean house
  
• Katie – we know you wished you lived closer to help out with Lucas, but we appreciated all the meals and baking you sent up regularly.
  
• Rev Veldman – I think we are up to visit number 6 (and counting). Thank you for driving the long distance to the hospitals and visiting/praying with us.
  
• Our specialist Prof Jan Dickinson and her team – you were constantly positive at each visit and did your best to answer all of our questions and more. Thank you also for coming to see us after Tahnee’s birth.
  
• Our GP/OB/GYN Dr White – you were with us at the beginning of our pregnancy until you referred us to King Edward, but yet you still wanted to be kept informed about our baby and then about her progress after birth.
  
• The nurses, doctors and surgeons at PMH – we were able to go home each night and be assured that Tahnee was well looked after. We never had to worry.
  
• Our fantastic midwife at KEMH, Laura – without realizing it at the time, you kept us calm in the labour ward. Without you the outcome could have been very different. Thank you also for the opportunity to hold Tahnee straight after being born, something we were told not to expect.
  
• Our CDH Australia volunteer friends and their families: Sharon and Maryanne – almost every week we would receive a message or an email. It is also good to see your CDH children, Liam and Rebecca, doing so well and living normal lives.
  
• Our fellow CDH families, especially: Renee, Jaime and Jess – we have all traveled the difficult journey of CDH and have different endings, but we all shared the same emotions and only a fellow CDH family can truly appreciate what it all involves physically, mentally and emotionally.
  
• All the people who have being praying and thinking about us during our journey.
  
• All the people who have taken the time and remembered to ask our parents and siblings how they are coping with everything. They too were under a lot of stress and needed thoughts, prayers and someone to talk to.
  
• All those who have (and will) made meals for us since Tahnee was born – it made a huge difference not having to come home after a long day at the hospital and have to cook dinner. It gave us more time to spend with Lucas.
  
• Our bosses – thank you for giving us all the time off we needed and being so understanding about everything.
  
• The Southern River Youth for coming to do some yard work – again it left us more time to spend with Lucas and Tahnee.
  
• All those who have sent cards and/or presents – you have made the birth of Tahnee all the more special.
  
• Lucky last (but definitely not the least!), Martin, Kristy & Lachlan Visser – for opening up your home (and hearts) and looking after Lucas every weekday for the last month! I don’t remember a day that Kristy didn’t come out to the car to greet us J. Lucas loved going to your house and I could relax and not worry, knowing that he was getting all the attention, hugs and kisses he wanted/needed.

 We hope that we have remembered to thank everyone. If we inadvertently forgot you, please do not take it personally!

Homeward Bound

Last weekend I was asked by the doctors at PMH to "room in" which means stay there in the parent accommodation, which is attached to Ward 6B NICU. On the Friday night Tahnee slept in the Ward Nursery and I was paged each time she woke up for a feed. Then on Saturday and Sunday nights she was allowed to "room out" which means stay with me in the room. I just had to bring her back each night after midnight so she could be weighed. This was fantastic news as it mean we were again, one more step closer to bringer Tahnee home! The doctors also said that as of Friday night, her nasal gastric tube would be removed and it was "suck or starve".

On the Friday night Tahnee was expected to lose weight as she was now having to work hard at sucking for each feed. However, our little girl had other ideas and actually gained 50 grams!! Then on Saturday night she gained a further 95 grams! Sunday was a little different and she remained the same weight, however she opened her bowels up without medication, so that was a huge plus.

So because of her good progress, we were kind of hoping that she would be discharged on the Monday, so Chris took the day off work, and we anxiously waited for the doctors to do their rounds. The nursing staff were confidant we were going home and they had actually been preparing for her discharge, getting everything organised over the weekend.

During the morning the head nurse, Cathy, came around and said that Tahnee was eligible for an RSV (common cold) immunisation and this would arrive from KEMH by 2pm. We were happy to stay for this, as its not available from the doctors' surgeries, plus its very expensive and therefore only offered to babies considered to be at high risk. The downside of this immunisation is that it only lasts for a month. But at least she is covered for a month!!

FINALLY AFTER 5 WEEKS IN HOSPITAL AND 2 SURGERIES TAHNEE WAS ALLOWED TO COME HOME! :)
Mid morning we received the good news from the doctors - they were satisfied with Tahnee's progress and she would be discharged and allowed to go home as soon as the paperwork was done. We spent the new few hours giving her a feed and cleaning up the room. Chris did 2 trips down to the car with all of our stuff!

While we were feeding Tahnee in our room, we got a message from our nurse saying my expressed milk had arrived from the milk room. When we walked in we were shocked at how much had accumulated over the last 5 weeks of expressing!! It took Chris another trip down to the car :)

Just as were about to leave the Ward for the last time, a number of staff came in to have their last cuddle and a few photos were taken. It was a very special moment for us and we were very excited about taking her home. There was also another couple whose baby girl had been at PMH for the same amount of time and who we had gotten to know while the girls were in the Nursery, as their beds were next to each other. This couples' beautiful baby girl was also being discharged, so they came on the photos too! The nursing staff were actually quite disappointed to see us go, but also happy too! As parents, you form a strong bond with the nurses of your child.

L-R
Nurse Cathy, fellow parents leaving same day, us, Neonatal registrar
Nurse Kathryn, Nurse Nicole & Nurse Dana

Then, after walking out and loading Tahnee into the car, we drove out of the car park and headed for the freeway. We were on the Narrow's Bridge, about 10 mins away from PMH when we discovered that Chris didn't have his mobile phone on him. So that meant a U-turn and trip BACK to PMH to find it!! Luckily it was found, as it had been caught up in the bed sheets and the cleaning staff had already begun cleaning the room!

Finally, after this slight diversion, we were able to hit the road and take our baby girl home! Her first afternoon, night and morning at home were uneventful, with her sleeping for most of the time. Our biggest battle at the moment is keeping Lucas away from her and teaching him to be gentle! I have a feeling this will be an on-going battle :(

We are very thankful to have taken Tahnee home and are excited about settling in at home with our 2 children. We will continue to update the blog with events in our lives. And stay tuned for a slight re-vamp when we update the blog design with a current family photo :)

For those who are interested in figures:

At birth
* 3440gr * 56cm long * 37cm head circumference *
(lighter but longer than Lucas, same sized head)

At discharge
* 4225gr * 56cm long * 38.5cm head circumference *
(finally over Lucas's birth weight!)

Lucas & Tahnee

This weekend I was given a room at PMH and I was also told I could do something called "room out" which means take Tahnee out of the nursery and into my room. I am then responsible for feeding, changing and caring for her, just like I would at home, but with the nurses close by. And since we had already organised for Lucas to come up and visit with me, we were able to re-introduce Lucas and Tahnee. It was a very special moment for us both :)

Tubeless

On Friday Sept 23rd Tahnee had her final tube removed, the nasal gastric tube in her nose that tube fed her when she was asleep or not sucking. This meant we could finally and clearly see her beautiful face!

Soccer Carnival 2011

Saturday September 24th 2011 was the annual FRC Soccer Carnival and Grand Final Day. Unfortunately I was unable to go as I was at PMH with Tahnee, feeding. However, Chris and Lucas headed down and enjoyed playing with the pet animals from Old MacDonald's Farm and getting Lucas's face painted. Lucas chose to have a dog painted on his face, but when the artist was half way through he decided he didn't want it anymore, hence the unfinished face!

More Progress

Yesterday on their daily morning rounds, the Doctors were concerned with an apparent lump that Tahnee has under her scar (lower abdomen). They arranged for an ultrasound to be done that day. Unfortunately, we got the phone call that they were ready for her just before her feed time. But since we can’t keep them waiting we headed down to the US department armed with a bottle. For the next 30-40 minutes Tahnee was poked and prodded with the US probe. She was most upset as it was uncomfortable and she was hungry!! When we got back to the ward I fed her, but she promptly spewed it all back up...along with the next feed L. This was to be expected as her tummy had been played with and agitated!

The results of the US indicate that the lump is simply her kidney and nothing to be concerned about. So then, on their rounds this morning the Doctors once again played with her lump and let the student doctors have a feel too. All this just before a feed. Again poor mum got projectile vomited on!! It was very gross!! But at least everything with the lump is all good news.

The other good news that we received from the Doctors on their rounds is that Tahnee could be taken off her oxygen saturation (sats) monitor. This has left her with one tube, the nasal gastric for her tube feeds J

We were also told that she would be weaned from her 2 hourly feeds up to 3 hourly feeds. This is very good news as it means we are one step away from taking her home. She just needs to tolerate this change to her feeding and then start to suck every feed from either the breast or a bottle...and gain weight!

And that’s the latest progress update on little Tahnee J. Sorry no photos as I couldn’t find my camera today while I was at the hospital.

Sunday @ PMH

Weekends at PMH are vastly different on the weekends! For one its a bit quieter, there are less doctors and nursing staff on. Plus, there seems to be fewer parents in visiting their babies. This creates a more relaxing environment and gives us both more of a chance to talk and joke with the nurses :)

When we arrived at the hospital today we had a note from the night nurse (who we haven't met). Receiving a note from the staff is a rarity. This is what it said:

And this is how we found Tahnee.

Yellow and blue blankets

Yellow and blue clothes

Today the afternoon nurse was Bec, and she was lovely and kind enough to take a family photo. Its our first one with the 3 of us.

One of the nurses on the main floor (high dependency unit where Tahnee used to be) was Frances and we get along very well with her. She is fun and very talkative!! The location of Tahnee's bed has a window behind it and allows us to look into a section of the HDU, and we can actually see her old bay and bed area. Now Frances was working that same bed area today and her and Bec are good friends. In fact, Bec had just invited Frances to her wedding and Frances was very excited and pulling lots of faces and doing happy dances through the window. At one stage, Bec had gone into the HDU to talk with Frances, so we wrote notes to both Bec and Frances:

To Frances: "to Frances, I miss you, love(heart) Tahnee"

To Bec: "to Bec, PLS come SAVE me from my dad, love(heart)Tahnee"

This got lots of laughs and smiles from both nurses. And it even promoted another nurse to come into the nursery from the main floor to tell us how clever Tahnee was that she was already able to write notes :)

Now, to an update on Tahnee :) She had a good day. As of 11am she has been successfully weaned off her hourly feeds and continuous milk feeds and is now feeding every 2 hours. This means we are 2 steps away from taking her home!! The next step is 3 hourly feeds and then demand feeding, but a lot of NICU babies don't get to demand feeds as they are very used to timed feeds! I was also able to feed her 3 times today and she kept all of her feeds down! This is fantastic as she had a setback a few days ago when being weaned off her continuous milk feeds onto 2 hourly feeds. She began vomiting too much, so the doctors reverted back to 1 hourly feeds. But now she is onto 2 hourly feeds :)

We also bath Tahnee. I let Chris do the bath while i took photos. Bec our nurse also offered to take some photos of this event. Actually, she grabbed our camera a few times during the afternoon to take photos :)

Thank You SR Youth

We have been truly experiencing the communion of saints lately...just over a week ago, Kyle (brother/brother-in-law) asked if it was okay with us if a group of youth from our church (FRC Southern River) came around to do some work around the outside of the house. The youth have been volunteering their time to help various members of the congregation.

So bright and early last week Saturday morning Kyle came over together with Eric, Chris S, Nicole, Leon, Nikki and Katie. They all worked on various things including mowing the lawn, weeding and mulching the garden, pruning the rose bushes and generally tidying up. It looks FANTASTIC!!

We feel very privileged to be on the receiving end of their kindness and we thank all those involved!! Thank you for spending your time helping us out and allowing us to spend more time with our children, both at home and at the hospital :)

(I have been waiting for a time to take a photo and upload one, but the weather has not been cooperative during the times that i am home - will upload one when i get a chance to take one!)

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!