~Updates~

*Please note that updates will appear with the most recent post at the top, to read earlier posts just scroll down.

August 2005

On the 31st of May 2005 Phelicity underwent her fontan completion at the Columbus Childrens hospital in Ohio. Phelicity had a pericardial extracardiac fontan, what this means in parent terms is that her pericardium was used to create a tunnel to her pulmonary artery so that her blood can go directly to her lungs. This was done on the outside of her heart so that her heart did not have to stop beating. Due to a team of Drs who are dedicated to providing excellence, at no point during any of Phelicity's operations did she require a blood transfusion. This eliminated many complications that can occur as a result of receiving blood.

After surgery Phelicity had low sodium levels for a few weeks and this took some work to improve. She also had large plural effusions that resulted in a total of three chest tubes over 7 weeks. There were a lot of ups and downs  during her 7 week recovery, but eventually she came through.

Our friends in Ohio were kind enough to provide our family with two meals a day for the time that we were in hospital for this we were grateful, it was a mammoth task.

To the nurses and staff on 6WCC, you touched our family forever. We never imagined that our daughter would receive such wonderful care anywhere, you treated her as though she were your own. The trip to Canada to renew visas was made a little less traumatic because we new that you were all there. Phelicity still hates the needle room and sings her walking song along with her bath time song "I need to have a bath in the sink sink sink because 
stink stink stink".

Lets not forget that during her hospital stay she also had a new baby sister that she thought Mummy and Daddy brought just for her. Arabella Pamela was born on the 6th of July. Again this was made easier because of the help of our friends and staff on 6WCC.

For Drs Galantowicz and Cheatham and their amazing team, we will never know what to say in gratitude for what you have given to our family. No words will ever be enough, but know that you hold a special place in our hearts.

On a sad note, whilst in the U.S we were hosted by a wonderful friend Aileen, who opened her home up to us. This same kindness was also extended to a family from Sweden (Aziz and Maria) whose son Kevin also had HLHS. We became a family in just a short time. Sadly our dear baby Kevin died, leaving behind wonderful parents and his twin brother Robin. We will always love Kevin and look forward to a time when we will be able to see him and hold him again.

To our friends in Australia and the US who supported us throughout these last three years, THANK YOU!!!

Finally we are home again in Australia. Phelicity is a happy and extremely active three year old girl. We look at her fondly and think of how brave she is and all that she has endured. Although we close a chapter in our journey, we look forward to many wonderful years with this little girl who despite a difficult start has proved true to the meaning of her name and brought "happiness" to the lives of those that she touches.

Ben and Veronica Sneesby, parents to three beautiful little girls.

May 2nd
Phelicity has returned to the United States after demonstrating signs that she may be growing out of her last surgery. A cardiac cath was performed  last week that showed Phelicity had develped some collateral viens in her  heart. These were not helping her, so tiny coils that look like a spring were used to close them off. Drs Cheatham and Galantowicz were able to have a good look inside her heart, and say that she is a good candidate to have the fontan completion. This should be the final surgery that she will need. Her fontan completion has been scheduled for the 31 of May. We are living  with a friend who has kindly opened up her home to us. We have also been provided with a car to enable us to be independent during our stay. Our family is surrounded by caring friends who have demonstrated true friendship and love.

March 2005

Phelicity continues to go well. She had a visit at the cardiologist last December and he was really happy with the results of her echo. It turns out  that Phelicity will become a big sister in July when she turns the big number three. She is eagerly awaiting something more interesting to happen to Mummy's belly. Checkout the photo of the new baby.

Mahalia is great and they have fun playing together. We are not sure yet  when Phelicity will need her next operation, we just enjoy having her so well. We want to thank everyone for their continued support and best wishes.
Ben, Veronica, Mahalia and Phelicity

26th of January 2004

Phelicity Brooke-lyn Sneesby now 18 mths old, the same age that Mahalia was when we were told of Phelicity's heart defect. Phelicity continues to blossom weighing in at 9kg. Although Phelicity is not walking she keeps all that care to watch amused with her commando crawl, it will be only a short time till she takes the long awaited steps. Phelicity is well known for her beautiful manners always happy to say thankyou, see ya later and I love you. In Dec she had grommets put in her ears as she was having constant ear infections, the grommets would appear to have done the job and Phelicity is maintaining good health. Our plans for this year at present are quite unclear, however, we are planning a return trip to the United States in July so that Phelicity can have her fontan completed. This is going to require yet more fundraising so that we can give Phelicity this next gift. We love her more than ever and not a day goes by that we don't think how special and lucky we are to have a beautiful heart child our family. Mahalia now 3 old loves to boss her little sister around and is never short of a story to tell. Once again thankyou to all those special people that have given Phelicity a chance at life

UPDATE May 12th 2003

Phelicity is almost 10 mths old now and has defied the odds that we were given and is living a normal life as a beautiful daughter and a playful little sister and best friend to Mahalia now 2 year old.

Phelicity returned home from America on the 19th of January. She has been well apart from having endocarditis on her tricuspid valve, which required 6 weeks of antibiotics she had 4 weeks in hospital and then the daring team at Gosford Hospital let Mummy and Daddy bring her home and give her IV (long line) antibiotics, something they had not done before, with a child this young. That went well except she broke her line and after a very quick dash to hospital, had that repaired. She was just trying to keep the NSW Ambulance team, Doctors and us on our toes.

Life is returning to normal for us at this stage. Mahalia is in pre-school and is just loving that as she spent so long away from other children in order to keep Phelicity well. Phelicity spends a few hours twice a week in pre-school so that Mummy can go to University. Daddy is having fun playing and teaching the sax, his first love (apart from Mummy).

Phelicity has a little leak in her tricuspid valve  and is under the wonderful care of her cardiologist at the Sydney Children's Hospital, who has always given her the best of care. We are grateful for the love that he shows to Phelicity. We would also like to thank the nurses at Sydney Children's Hospital C2S and Gosford Hospital for the care and support that they give to Phelicity and us.

UPDATE 17th December 2002

Today was one of the scariest and most emotional days of our lives, but all is well and our little darling Phelicity survived her major ordeal.

She was on the table for 8 hours and 45 minutes, and the doctors said that she has done so well and there were no complications.  She was on bypass and her heart was stopped for over 7 hours but it started right away when her blood was redirected.

WHAT A TROOPER!

Today there were lots of tears and our journey's end is coming near.  Although we are not out of the woods yet, the next 2 days are very crucial but we are very confident given her past history that she will be just fine.

 Thank you all so much for the continued support, we can't wait to come home and share our beautiful baby with you all.
 

UPDATE 2nd December 2002

Phelicity had her cardiac cath today in preparation for her Glenn which has now been scheduled for the 16th of December. This was done by Dr Cheatham. They took some lovely photo's of her heart. Things went very well and he found nothing that he didn't want to. In fact the Drs have said that Phelicity really couldn't be in any better condition for her surgery than what she is at moment. She now weighs 5.5kg or 12lb 1oz so she has doubled her birth weight. She has not had any viruses since we stopped seeing to many people. We are going to be even more careful over the next couple of weeks so that she is perfect on 16th. Thankyou to all for your continued support

UPDATE 14th November 2002

Phelicity had a cardiology appointment today, the last couple of weeks have been good to her. She gained 600 grams in that time, WOW. Her last echo two weeks ago showed that the bands around her pulmonary arteries are starting to get very tight now. So this means that not as much blood is getting to her lungs for oxygen. It looks like her next operation is going to be somewhere in the first two weeks of December. As yet no exact date. Phelicity is developing like any other baby, she sleeps through the night and always wakes with a smile for us. To see her happiness with life makes everything worthwhile. It is starting to get very cold here in the States and I'm sure that we are in for the coldest winter of our life. I will update again when I have a date for her operation.
 

UPDATE 24th September 2002

We are pleased to say that Phelicity is better. She still has a yucky chest but is well on the road to recovery. She had a big weight gain last week of 300 grams. So we must be doing something right. We are just trying to avoid to much contact with people at the moment so that we don't get sick again. Especially now that we are getting close to the next operation.
 

UPDATE 15th September 2002

Things are still going well. Time is going so quickly there are just not enough hours in everyday. This is good as we want the whole thing to be over but sad in a way as well because we don't know what the future holds for our little girl. She didn't put any weight on in the last couple of weeks so they have put her on a pump through the night and have increased the amount of formula that they put in my breast milk. Hopefully this works I'm sure that it will. She is getting stronger though and holding her head up better. She has had a flu for 1 and a half weeks and now is getting  a bad cough with it. But her last eco was great so things are still progressing.

UPDATE 14TH August 2002

SHE'S HOME!!!! We are so pleased that we can tell you all that Phelicity has come out of hospital. We are getting used to sleepless nights and dirty nappies.  We also have to remember to give medications on time.  But apart form that she is doing so well we just need to make her nice and big for her next operation. For now though we are going to spend our days loving both our girls as much as we can and if that involves some spoiling than so be it.

UPDATE 3rd August 2002

I'm so pleased that I can give you yet more good news. Phelcity had the PDA stent put in on the 31st and has impressed all. She was taken off the ventilator yesterday just one day later and is breathing with no problems. They have started feeding her now. They tried when she was on the Prostin's, however that affects the stomach and she didn't absorb the food. She also had her central line taken out yesterday. She has a picc line which will go as soon as they are sure she will have no problems feeding. We have been told that she will be able to leave the hospital in around a week when her feeding is established. We of course are very proud parents and are honoured that she is our baby.  Mahalia is just loving having a little sister and is adjusting very well to mummy and daddy being a little busier than usual.

UPDATE 31st July 2002

At 11:30 US time Phelicity had the bands put around the pulmonary arteries. She came through this with  flying colours and is in a very stable condition. We were very nervous and she did us proud yet again. The PDA stent is hopefully going to be done tomorrow. If this happens we will be giving you more good news again soon.  She looks very good, the chest has been closed up and they are confident that she isn't going to have any complications. Now all we can do is sit by her bed and wait.

UPDATE 27th July 2002

The latest is that we met with Dr Galantowicz this morning and he is very happy with Phelicity. She will have the pulmonary banding on Tuesday and the stent in the cath lab on Thurs. She is in a stable condition and things are looking very good.