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 :)