Wow, it feels like we are way behind on blogging because so much happens and changes each day.  Faith’s surgery for her Brain Shunt went well on Tuesday morning.  The anesthesia wore off sooner than expected.  It was so hard to see her in pain and not be able to do anything for her.  We tried to console her but felt completely helpless.  Once the pain medication took effect, she was able to rest comfortably and was calm.

On Wednesday morning at 2:40 am, Faith’s nurse went into her room to check on her and she had extubated (took her own ventilator) herself and her stats were great! J  Girl already thinks she knows what is best for her!  At 5:30 am, they did a CAT scan to verify correct placement of the shunt.  The pediatric radiologist confirmed that the placement is correct.  At Noon, she was able to have her first feeding since before surgery and did well. 

When will we get to bring her home?  That is a question they cannot answer.  The Pediatric Neurological Surgeon will monitor over the next week or so to be sure that the shunt is working properly.  Faith will also need to be consistently taking 60 ml (2 ounces) at each feeding (every 3 hours) by mouth for a minimum of 48 hours straight.  Before surgery, she was averaging about 1 ounce by mouth and 1 ounce by feeding tube.  They feel that she was progressing well on her feedings before surgery and feel that she will have no problem getting back to that quickly.  We have also started to receive training on Colostomy care. 

We are both holding up fairly well considering the circumstances.  Faith is our #1 priority and we spend as much time with her as possible.  We do know that it is important for us to take care of ourselves as well.  We are doing our best to find balance. 

Thank you to everyone for your love and support! Happy Holidays!

With Love,

Steve and Michele

Surgery Tomorrow

We had a great weekend with Faith.  They took out her PIC line because she has been doing well at feedings.  She even started breast feeding!  

The Pediatric Neurologist came to check on her this morning.  Her head measured larger and her fontanel (soft spot) has changed.  He feels there is pressure now and scheduled surgery for tomorrow morning at 7:30am.  Please keep her in your prayers!

We have had 2 more good days together!  Today was Faith’s first time in clothes.  Mommy was so excited to pick out something for her wear.  They turned off her bed heater so that is one less wire she has!  Faith is now taking 53 ML (60 ML = 2 ounces) of breast milk.  They are increasing her feedings by 3 ML every other feeding until she reaches 65 ML total.  Once she reaches 65 ML, she will no longer need anything in her IV and can have her PIC (central) line taken out.  That will be one less tube she has!

We have had 3 great days in a row! Yesterday I was able to feed her twice, change her diaper twice, take her temperature, and snuggle. Daddy was able to have some snuggle time too.  Today I was able to feed and snuggle her and Daddy did the same.  Daddy also took her temperature for the first time.  It is amazing how doing the little things make us feel a little less helpless.  It is wonderful to be able to do something for her.  We are loving being able to do things for her and to bond with her. She is able to have a little more breast milk each day!

Faith will not be having surgery tomorrow.  The measurement of her head is exactly the same as it was at birth.  This means there is no pressure which is an awesome thing.  The longer they can wait to do surgery the better.  Time will allow her to grow bigger and stronger.  Time will also allow her abdomen to heal from her surgery last week.  This is important because when they put in her brain shunt it will drain into her abdomen. 

We do our best to explain what is going on.  Please feel free to post any questions you may have.  We will try to answer them the best we can and as soon as we can. 

We appreciate that we have so much love and support from so many people.  Many people have asked about visiting.  We appreciate it but have to do what is best for Faith.  Less visitors means less germs and less risk of infection.  Please continue to keep Faith in your prayers!

With Love,

Steve and Michele