Highlights since last blog update

12/23/11 – Mommy changed my colostomy bag on her own for the first time

12/24/11 – My Feeding tube was taken out because I am consistently taking my feedings by bottle.  First time in my bouncy seat and loving it!

12/25/11 – My First Christmas!  Mommy & Daddy changed my colostomy bag together.

12/26/11 – I can eat when I want and how much I want because I am such a good eater.  Daddy is sick so he couldn’t come see me today.

12/27/11 – Mommy and Daddy are both sick and need to stay home to get better so they can take me home in a few days.

12/28/11 – I passed my car seat test as required before I can go home.

12/29/11 – Getting ready to go home tomorrow

12/30/11 (25 days old) – Discharged today.  I was home about 30 minutes before my shunt started leaking badly.  Mommy and Daddy rushed me to the ER at DeVos Children’s Hospital.  I was readmitted to the NICU, not feeling well, and not my normal sweet self.  

12/31/11 – Faith is doing okay... grumpier than normal and not feeling well still. She is just not her sweet self yet. Not eating much yet and getting fluids, antibiotics, and Tylenol.

1/1/12 - Faith is doing okay today but still sleeping more than before. She is eating more consistently and off of IV fluids. She is still receiving IV antibiotics. Her shunt was adjusted. They will continue to monitor her closely. 
1/2/12 - Faith is doing a little better each day. Today she is having some awake time which she hasn't had since before her shunt started leaking. They will continue to monitor her closely. No word on when she will come home. 
1/3/12 (4 weeks old) Faith is doing well today. Having more awake time and eating great. She continues to receive antibiotics (in case of infection) and is being monitored closely.
1/4/12 -Faith's brain shunt started leaking again this morning. She had surgery to have it removed and to put in an external shunt. After about 2 weeks they will put in a new shunt.1/5/12 - Faith is doing well today and seems comfortable.  She is still on ventilator because she has to be sedated for MRI @ 4 pm.  MRI rescheduled to 11:30 pm 
1/6/12 - Faith is doing okay today. MRI was finally done @ 1 am. No results from that until probably tomorrow. She is still on the ventilator but hope to have her off that by tonight. 
1/8/12 - Faith has been doing well. She was taken off the ventilator on Friday around 4pm. She is back to full feedings already and is such a good eater. The Pediatric Neurologist came to see her on Saturday. She is very pleased with her strength and abilities. She said that she is doing everything infants her age should do! :) She told us to start a college fund. This is the best news ever!
1/10/21 – 
7:30 am - Faith is in surgery to have the fluid/mucus drained from her vagina.  ShannyBear (our 7 year old Kitty) is also having surgery today to remove a tumor. 2 out of the 7 of our little family having surgery in one day is just unacceptable ... but necessary. Keep us in your thoughts and/or prayers. We appreciate all the support!

10:08 pm - Faith's surgery was twice as long as expected but she did well. She *should * be coming off the ventilator in the next few hours. She is doing well and has her favorite nurse Jen tonight. So Mommy is going to get some much needed rest after a very long day! 

1/11/12 (Due Date / 37 days old) - Faith was off the ventilator at 10pm last night. She had a very restful night. Very grumpy this morning but was very happy after getting her first feeding at Noon. Over all having a good day! :)

Updates on Facebook

We apologize for the lack of updates on our blog.  It is very difficult to find time to get much of anything accomplished these days.  We have been updating Facebook regularly because it can be easily done for our cellphones when ever we get a minute.  Is there anyone who checks our blog but does not have Facebook?  Please let us know if you do not have Facebook to get our updates: michelesunde@live.com. 

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