The journey is not over

I thought that once we got Lily out of the hospital that things would be "normal" so to speak.  She didn't need a feeding tube and was taking full feeds by mouth.  She only needed oxygen for a little while.  She is on minimal medication and has no signs of pulmonary hypertension, which plagued her early days and was the reason for her needing ECMO.  As far as CDH babies go, we are pretty lucky.  However, Lily's journey is far from over.  Every CDH baby has a different journey.  That was something that I didn't fully understand before we started.

Among the specialists she has to see are neurosurgery and cardiology.  On her post ECMO MRI they found ventriculomegally (enlarged spaces in her brain).  During her initial head ultrasound when she was placed on ECMO, they found a resolving Grade 1 brain bleed (probably from cord compression at birth).  Because of these two things, she has been monitored by neurosurgery since she left the hospital.  Every 6 weeks we checked her head circumference and plot it on the growth chart.  From her last appointment in July her head circumference went from the 60th percentile to the 95th.  They are suspecting that she has hydrocephalus.  Lily is going to have a sedated MRI done on October 5th followed by an appointment with the neurosurgeon to decide what to do.  If its hydrocephalus, the two options require brain surgery.  I am so scared for my sweet girl.  Please pray that the MRI shows no hydrocephalus.

Lily also has two unrepaired VSDs and sees the cardiologist every 4 weeks.  Almost 3 weeks ago at her appointment, the dr said that if she didn't gain sufficient weight in 2 weeks (she had not gained in a month) that he was going to refer her to the surgeon to have her heart repaired.  Well Lily heard the threat and gained almost a full pound.  She is still a little bitty thing (11lbs 9oz at 5 1/2 months old) but she is feisty.  At her next appointment she will have another echo and chest x-ray to see if her heart needs to be repaired yet.  At this point it is not a matter of if but when.  Her moderate size membranous VSD is not likely to close on its own.

Lily has recently developed a cough so I took her to the pediatrician today.  He thinks that it is just worsening of her reflux.  However, if it doesn't improve over the next few days he wants to send her to the cardiologist sooner than her next appointment.  The cough she has could be a sign of heart failure from her VSDs.  The VSDs cause the left side of heart to push more blood to the right side of her heart which pushes more blood to her lungs causing fluid to accumulate in her lungs.  She takes a diuretic currently to help combat the extra fluid.  Please pray that we can wait longer before her heart needs to be repaired.

We also had her developmental screen on Tuesday and she is about 2 months behind in her physical development.  This is not surprising and its why I take her to OT and PT twice a week.  Please pray for big strides in development

Otherwise, when you look at my sweet Lily, you would have no idea she has been though and is still going through so much.  She is such a joy to be around and is always smiling.  We are enjoying having her at home and so is her big sister.  Now I will share some pictures with y'all!

Dr Big Sissy

 Visiting the SC aquarium

Family picture on the beach in Edisto


 Baby toes in the ocean

Beach baby rocking the bikini (you can barely see her scar)

Sweet sisters

 Big baby smiles

Beach girls

Beach cuties in the sun

Lily with her big sissy and cousin Caleb (also a CDH survivor)

Please continue to keep Lily in your prayers.  Also she has several CDH buddies that need continued prayer.