Miracle Baby

Thank you for all of your prayers and financial help since Sara’s journey to a healthier heart started.  Knowing that they are being lifted in prayer has provided comfort for Danielle and Dave, and healing for baby Sara.  Since the last post Sara has had another open heart surgery – the Bidirectional Glenn.  This surgery gave Sara’s heart enough function, blood flow and better oxygen levels to begin her road to recovery.  At the beginning of the new year Sara had improved enough to come off of all oxygen support – this is a huge step towards being strong and well enough to come home! Here’s a picture from a few days after Sara came off of oxygen and moved out of Cardiac Critical Care.  Such beauty and strength in a tiny little body.  Sara is truly a miracle baby.

After two open heart surgeries,  numerous serious complications and ten weeks in Cardiac Critical Care, Sara has moved up to the heart ward on 4D where the doctors and nurse practicioners can focus on transitioning Sara to come home.  Home is likely still weeks away, as a plan is being worked out for Sara’s feeding (She is still needing the NG feeding tube), and physio to help recondition and strengthen her little body.  Finally, after weeks of spending the nights away from Sara at Ronald Mcdonald House, Danielle and Dave are able to stay with Sara in parent care on 4D at SickKids hospital.  This is a family photo from their first night together as a family in a very long time.  I would imagine that some tears were shed that night!

Please continue to pray for Sara – for healing for her little body, progress with her feeding and physio, and for the doctor’s to put the safest plan in place for bringing her home.  Sara needs to come home and grow and thrive with her family in preparation for her next open heart surgery.  As Danielle and Dave spend their last few weeks in Toronto they could still use your financial support.  The cost of living in downtown Toronto is high, any amounts are very much appreciated and help ease the financial burden that is on this family’s shoulders as they care for their baby girl. Etransfers can be sent to galgayd@gmail.com if you are willing to spare a little.  Thank you all for your support of this young family.

Sara’s First Christmas

It’s been quite an eventful few weeks for Sara since the last post.  Life at SickKids for a heart baby is often a rollercoaster.  One day things seem good and on the upswing, and the next day your baby stops breathing in your arms for no known reason.  It’s exhausting, and you need to spend each and every moment that you have loving your baby.  In Sara’s case, this is often all that Danielle and Dave can do.  Love her and touch her, and if they are lucky – hold her.

Danielle and Dave got a small Christmas tree for Sara’s hospital room.  The hospital is so cold and sterile, but this small touch may make it more bearable in the days leading up to Christmas.

Sara’s heart and little body have been puzzling her Doctors.  Twice now Sara has stopped breathing, and the reason for that hasn’t been found yet.  The doctors at SickKids have been doing many tests do try and understand what is happening with Sara.  They have determined that she may have damage done to her small bowel because of circulatory issues, and placed Sara on a 7-10 day stomach rest, where she is allowed to consume nothing orally.  Sara was hooked up to and IV and TPN Nutrition to keep her little body going – but 10 days is a long time to have an empty belly, especially if you are a baby.  After another episode where Sara stopped breathing while in her Mother’s arms, the doctors have done multiple Echos, a MRI and yesterday Sara went into the Cath lab.  Danielle and Dave have been told that they will get some answers on Monday.  It’s a heartbreaking and frustrating process when you can do nothing to help your baby and the Doctor’s have no real answers to your many questions.

At this point, it’s a waiting game for Sara’s parents…they have to wait, trust in the healthcare system and believe with all of their hearts that they answers are coming and Sara’s little heart will be able to sustain her so she can grow and be happy at home with her family.  Here’s a family photo of Danielle, Dave and Sara

.  As they face the unknown and fight for their daughter they are spending Christmas away from home and in a strange city.  If you would like to help them out financially, you can etransfer to galgayd@gmail.com, or email fellow heart Mom Krista at kspearns@hotmail.com .  Sara’s Aunt and Uncle came to visit her from Newfoundland this week…Here they are in her hospital room…When some answers are known, I’ll post a new update.  Until then, please pray for Sara and for strength for her parents and family.

This is baby Sara.

This is baby Sara.

Sara is a miracle baby who needs your prayers and support as she fights Congenital Heart Disease at the Hospital for Sick Children (SickKids) in Toronto.  Sara’s family lives in Newfoundland, but Sara has never been to her home because she has needed to stay close to the Janeway since her birth on September 18.  Sara’s Mom and Dad are Danielle and Dave, and they are living through the hardest days any parent will ever endure.  Sara is a Heart Warrior – she has Double Outlet Left Ventricle, Hypoplastic Right Heart Syndrome, Transposition of the Greater Arteries and Pulmonary Stenosis with a large Ventricular Septal Defect.  Quite a mouthful of terminology for such a tiny little person.  Sara’s complicated heart can be put into layman’s terms by stating that she has essentially half a heart.  This statement is oversimplifying a heart that is incredibly complex, but it allows those of us who are not doctors to have a general sense of what Sara is facing.

Sara’s family has been preparing for her to have her first open heart surgery in Toronto, a procedure called the Bidirectional Glenn which was expected to be in January 2014.  At her Echocardiogram in early November however, Sara’s heart situation had gotten worse and she needed to be immediately sent to SickKids by air ambulance.  Sara had her first open heart surgery much earlier than planned, at less than 2 months old and weighing only 8 pounds.  3 weeks after her open heart Sara is still in Cardiac Critical Care, but each day brings her new strength and progress.  Danielle and Dave are fortunate to be staying at Ronald Mcdonald House in downtown Toronto, but are facing an extended stay because Sara is unable to return to her home province until after her Glenn procedure and it’s recovery period in early 2014.  Sara’s first Christmas will be in Toronto, either at SickKids hospital or at Ronald Mcdonald House.  At the most recent update, Danielle is hoping that Sara will move out of Cardiac Critical Care this week and up to the heart ward on 4D.

An extended stay away from home for life saving medical care, with two parents who are unable to work because they need to be with their baby each day – it’s an incredibly tough financial situation.  Danielle and Dave need to be able to focus all of their strength and energy on Sara to help her heal, and they do not need the constant worry and stress of money issues adding to their burden.  As a heart Mom myself, I know that the money that our community gave us took one enormous burden off of our shoulders and allowed us to focus on our son’s lengthy healing process.  Danielle and Dave have not asked for any donations, but a group of fellow Heart Mom’s know what a difference a little help can make in an impossible situation.  A donation of $10 can make all the difference when it provides a meal for Mom or Dad, or a cup of coffee and a muffin during a long afternoon spent in critical care.    If you would like to help this sweet family stay strong during their time in Toronto, you can send an email transfer directly to Danielle at galgayd@gmail.com.  If you don’t use the etransfer tool, donations can be given to fellow heart Mom Krista Spearns and she will etransfer them to Danielle.  Krista can be contacted at kspearns@hotmail.com .

Most people never get to meet their hero.  I gave birth to mine!