Thursday, December 31, 2009

9 Pounds

WOW...I can't believe how far Hope has come in such a short amount of time.  When we brought her home from the hospital on October 28th, she weighed a little over 6 pounds...not much more than when she was born.  In 2 months she has gained almost 3 pounds and she has grown in so many other ways.  She is smiling like crazy now, she is grabbing for things, she is following us with her eyes, she is trying to roll over...she can go from her back to her side real well.  So many little things everyday that give us so much joy and happiness that it is hard to describe.  The boys love her so much and they can keep her entertained just by smiling at her.  Jerry even brings her his toys and tries to get her to play with them.  We are all so blessed!

The boys decided to build a snowman.  We really didn't have all that much snow, so they improvised and used a garbage can to create the snowman.  They loved it and he is quite the snowman.

Monday, December 28, 2009

Very Merry Christmas

I hope everyone had a wonderful Christmas this year.  We sure did!  Our scare earlier this week was nothing and we just spent a couple hours at the cardiologists having her confirm that Hope looked fine.  It was a wonderful appointment and put our minds at ease for the holidays.

Our whole family had a wonderful weekend with family for Christmas.  Santa stopped by on Christmas eve because he knew we would not be able to visit him and get pictures taken.  We even took Hope to Jerry's mom and dad's house for Christmas eve.  It was great being with family...Hope was her normal cranky self because it was her cranky time of the day.  The boys were thrilled to spend time with their cousins opening presents and playing with all their new toys.  Christmas morning was wonderful.  My mom came over to watch the boys open their presents and help cook.  It was perfect because Jerry is finally old enough to understand Santa and was really excited to see what Santa left for him.  The rest of the family came over all day and it was great having everyone with us for Christmas.

We are so thankful this year and God has provided so much for us this year.  It has been hard, but it has also been truly rewarding.  We want to thank everyone for all the help, prayers, and support this past year.  I know we are going to rely on everyone again next year.

Love, health, and happiness to everyone!

Monday, December 21, 2009

Christmas Pictures and Nerves

First things first...Christmas pictures.  I am not sending cards this year because I just don't have time.  I am posting them here for everyone to see and hopefully I will have more time next year. for my nerves.  The physical therapist came today and noticed that Hope is looking 'dusky'.  I wasn't too concerned because she didn't seem concerned and the home health nurse didn't seem concerned.  Now, though I am concerned and I contacted the nurses and am taking Hope to see the on-call cardiologist tomorrow.  I am so scared that they are going to find something wrong  and that we will need to spend Christmas at the hospital.  I am crying my heart  out as I write this because I am looking forward to Christmas this year with Hope at home and the boys being old enough to really enjoy it.  I don't want to think about tomorrow, but I can't seem to think about anything else. I am so worried that something may be wrong with Hope and I am also worried about not having a wonderful Christmas with my boys.  They have been through so much this year and I wanted them to be able to really enjoy Christmas.

Please say an extra prayer for Hope today and tomorrow morning.  Please pray that I am worrying for nothing and that she is fine.  All thoughts and prayers are greatly appreciated.

Monday, December 14, 2009

3 Months

Hope is 3 months today!  What a wonderful feeling and we are so thrilled with how well she is doing at home.  Christmas is almost here and Hope is the best Christmas present we could ever receive.  I hate thinking back to all the bad news we received, both before and after she was born, but it is hard not to look back and know how blessed we are.  God has been great to our family.

Hope has been reaching her milestones which is great.  Although I really like her physical therapist and she has taught me so much, I am glad that she is where she is supposed to be for her age.  They are going to stop her visits and that is kind of hard for me because the physical therapist is really hands-on and had taught me a lot about helping Hope develop.  Our feeding problems seem to be a thing of the past (knocking on wood as I type this).  Hope is taking 80-100 mls every 3-4 hours.  She hasn't been throwing up...except when she gets mad or isn't burped enough.  She is gaining pretty good and will probably be 9 pounds by January.  I am really trying to get some pictures of her smiling.  She and I will spend a lot of time smiling at each other and it is so much fun.  She loves to practice smiling and has been showing off to everyone that is willing to sit and smile at her.

We had a nice surprise today...the Palliative Care Team from Akron Children's Hospital came by with some presents for our family.  For anyone that hasn't read back in my blog, Hope was at Akron Children's Hospital after she was born.  The surgeon's did not think that she would be a good candidate for the Norwood because of her kidney problems, so they decided not to do the surgery.  We decided to take Hope to the Cleveland Clinic Children's Hospital and they performed the Norwood for her and the rest is history.  We were treated really well in Akron and I LOVE the Children's Hospital.  Everyone was/is great and we would have loved to have stayed there, but God had other plans for Hope and our family.  We are so happy with our decision to get a second opinion and especially happy with how well Hope is doing.  I am also thankful to everyone in Akron who walked our journey with us from the time I found out until today.

The hardest thing for me to think about now is Hope's next surgery.  It can be scheduled any time now and that makes me so nervous.  I really want to wait as long as possible before she goes back for her next surgery, but I also want to make sure we don't wait too long.  Hope is doing great and I worry every single day that something might happen.  I know the next surgery will hopefully be the last for a couple of years and in that way I am kind of excited to get it done.  I believe that God will show us the best time for her surgery and I have total faith in Him and in the doctors that are caring for Hope.

I hope everyone is enjoying the holiday season.  I know I will update again before Christmas, but until then...hug your kids a little extra, call your friends and family, enjoy the holiday season, and remember the meaning of Christmas...LOVE!

Saturday, December 12, 2009

My Kids

This is a collage of my little ones...all at 2 months old.  If Hope didn't wear pink I am afraid she would look exactly like her brothers.  I am amazed at how much they all look alike when they are young.  Jerry and Paul look so different from each other now.  In the picture...Jerry is on the bottom left and Paul is the bottom right.  They look so much alike and today they look so totally different.  Here they are getting their haircut...thanks to my sister for taking them (otherwise I am afraid they may never have gotten their haircut).

Here is Jerry...gotta love the tail.  I will have it cut when he decides he doesn't want it anymore.

 Here is Paul...of course he has a bump on his head.  I think it has been a constant since he learned to walk.  I didn't want to post the pictures where he was actually getting his haircut because he spent the whole time crying.

They look so different and I thought they would look so much alike when they were babies.  At least this probably means that as Hope gets older, she will look less and less like them and more like the beautiful girl she is.

Thursday, December 10, 2009

Cardiology and Nephrology

Yesterday was appointment day for Hope.  She started with the regular weight, height, pulse ox check.  All looked pretty good there.  Her pulse ox was lower than it has been 82 as opposed to 86, but Dr. Prieto said that is because we increased her Captopril...I guess when you increase that it puts more blood in the body and less to the lungs which means that the pulse ox goes down.  We will continue watching that number to make sure it doesn't go to the 70s and stay there or we will need to decrease the Captopril.  Everything is such a try and see what happens with Hope.  After the regular stuff, Hope got her echo.  She did really good for about 5 minutes.  She was happy and cooing and smiling.  That didn't last too long though and she went to her normal crying fit.  It didn't help that the tech was doing some training and taking longer than normal.  At least she didn't throw up on her this time!  After the echo we met with Dr. Prieto which went really well.  She said everything was looking just like she expected and she was happy to say that we could have an appointment free holiday.  We don't have to go back until the 30th!  She also took her off Pepcid, so we will wait and see how well Hope does without the Pepcid.  I am hoping she will be fine and not have any reflux.  After that was done, the cardiac surgery nurse came in to see Hope.  She had a couple stitches that needed to be trimmed and the nurse decided to go ahead and trim them up.  Of course, Hope decided she didn't like that at all and threw up all over.  I kind of knew we wouldn't get through the whole day without a throwing up session.  She always finds something to irritate her enough to throw up. 

This is a really bad picture of Dr. Prieto.  It is from the Cleveland Clinic website.  I will have to take a picture of her with Hope at our next appointment.  She is a beautiful woman and a great cardiologist.

This is Dr. Kwon and it looks just like him.  I have issues with Nephrology because they are the ones in Akron that basically made the decision that she would not be a good candidate for surgery.  Dr. Kwon understands how I feel and has already told me that it would never come to him for that type of decision.

Once we were done there we had to drive to Shaker and see Dr. Kwon (her Nephrologist).  The high winds knocked out all the power, so we got to sit in a dark waiting room for a while because we were early for the appointment.  The bad part was that without power it was almost impossible to warm up her bottle.  I finally talked to the cafeteria and they were able to find me some hot water.  Anyway...Hope seemed to really like Dr. Kwon.  She smiled and started cooing for him.  His nurse was jealous!  Her kidneys are the same...small and low functioning, but they are working and that is good.  Her blood work was a little better than the last time she had it done which is great.  She will have some more blood work done the next time she is in to see Dr. Prieto.  She will have an ultrasound done when they bring her in for her next surgery.

We are really excited about the holidays, but have not done too much to get ready for them.  We are blessed to have a great family and friends to enjoy the holiday season with.  Without our family and friends, this past year would have been impossible to get through.  Thank you to everyone that has kept our family in your thoughts and prayers and for everyone that has gone out of their way to make our lives easier...and you know who you are!

Tuesday, December 8, 2009

8 Pounds

Can you believe it?  She is 8 pounds today!  I am so very excited with how well Hope has done at home.  She is consistently drinking 3 ounces every 3-4 hours and sometimes she will take almost 4 ounces.  I know...when she gets older she will wish that it took weeks to gain a pound...rather than the 5 minutes it takes me after I eat a big meal.

"Time passes quickly. Many parents say that it seems like yesterday that their children were born. Now those children are grown, perhaps with children of their own. “Where did the years go?” they ask. We cannot call back time that is past, we cannot stop time that now is, and we cannot experience the future in our present state. Time is a gift, a treasure not to be put aside for the future but to be used wisely in the present."

-Thomas S. Monson

Sunday, December 6, 2009

First Bath

I know some people may find this hard to believe, but Hope had her first 'real' bath today.  We have been using these disposable washcloths on her since she came home from the hospital...for a couple reasons.  First is because they told us not to submerse her in water until six weeks after surgery.  That would have been in November, but we didn't have a baby bathtub.  We must have gotten rid of the boys because I couldn't find one anywhere.  The second reason is because the boys hate baths and have since they were we weren't really looking forward to giving Hope a bath.  We thought she would spend the whole time crying and being upset.  Alas...we tried it and she loved it!  She is the only one of my kids that loves a bath.  She could have stayed in there all day.  That has to be something she inherited from me...I could spend hours laying around in the bath.

Thursday, December 3, 2009

So Hard

It is so hard for me when a little baby with HLHS passes away.  Today I learned that Hailey did not make it out of the cath lab yesterday and I have spent most of the day crying for her and her family.  It breaks my heart to think about the pain and heartache her family is going through right now and also in the future.  Christmas is coming so soon and to think that they won't be spending it together breaks my heart.  Hailey was a real fighter in her journey and has earned her angel wings.  Please keep her and her family in your thoughts and prayers.

I found this poem for Hailey's mom and wanted to share it here:

We wanted so much to keep you
We watched you day by day
Until with breaking hearts
We saw you slip away.

God watched you as you suffered,
And knew you had your share.
He gently closed your weary eyes,
And took you in his care.

Your memory is our keepsake,
With that we'll never part.
God has you in His keeping,
We have you in our hearts.

 Nothing can be more beautiful,
than the memories we have of you.
To us you were someone special,
God must have thought so too.


Wednesday, November 25, 2009

Happy Thanksgiving

I hope everyone that reads this and has followed our journey has a wonderful, safe, healthy, and happy Thanksgiving.  We have so much to be thankful for this year...more than we ever thought possible.  First and foremost, we thank God for our miracle and for answering so many of our prayers.  He has provided so much for us and we thank Him every single day.  Here is the rest of my thankful list:

My husband...he does not get the credit he deserves very often.  I am thankful that he is always here for me and for our kids.  He works his butt off every day and still comes home to work some more.  I know I need to tell him thank you more often and I plan to start today.

Our children...all of them are wonderful and I am thankful for each and every one of them.  I know this blog focuses on Hope and was started because of Hope and her heart condition, but all of our kids are so special and a blessing.  This is the first year we will all be together for Thanksgiving...Destiny included...and that makes it extra special.

Our family...every one has done so much for us this year and we are so grateful and thankful for having such a wonderful family.  Words cannot fully describe how much everyone has done for us and our hearts overflow with love and gratitude for every single person in our families.  They are truly heaven sent!

Our our family, our friends have offered so much support and help this year.  I have met so many new friends this year and I know these friendships will last a lifetime as well.  This year has been hard for many of my friends and I pray every day that they are grieving as they need to for the loss of their loved ones.  I cannot imagine the pain many of them are experiencing, but I know God will help them and hold them throughout.

My job...yes, I am thankful for my job and my husband's job as well.  Everyone has been great while we have been going through so much.  I went on maternity leave at a VERY busy time at work and my co-workers really helped out.  I have been getting back into the groove of things and I know I can call on any of them to get caught up.  There are so many people out of work right now and Jerry and I are thankful that we have jobs that we love so much.

Our house...with so many people losing their homes, we are thankful that we have a beautiful house overflowing with love.  Our house may not be the best and is definitely NOT the is still ours and it keeps us warm and happy.

Our health...we have managed to stay healthy through this flu season and we are thankful for everyone staying away when they are sick.  We have kept the flu, cold, and all icky stuff away and plan to keep it that way...hopefully forever (I can dream)!

I am thankful for so many other things that I just don't have time to write about all of them.  The ones I listed are the first ones that come to mind, but I thank God every day for so many things and I pray to God every day for so many people.

I hope everyone has just as much to be thankful for this holiday season.

Monday, November 23, 2009

Jerry's Fourth Birthday Party - Round 2

We finally got to celebrate Jerry's fourth birthday with most of our families.  My brother came to his small party last weekend with the rest of my family, but Jerry's family was sick, so we decided to have his big party with all the relatives this past weekend.  We didn't want to risk getting Hope sick, so we decided to wait a week and let all the cousins get better...we knew Jerry would love having all of them at his party too.

A little Hope update...she got the OK to start taking more in her bottle.  She is now up to 70 mls every 3 hours.  She is almost 8 pounds (3.68 kilos).  Today she was 3.43 which is 7 lb and 8.98 oz...really close.  She is also spending more time awake which is great.  She likes to hang out and check everything out.  She also loves to be carried around the house in the evening...around 7pm she is really awake and really wanting to be walked through the house.  I know it drives Jerry crazy because he gets to see her every day during her cranky time, but it just makes me realize how 'normal' she really is!

Hope got her Synagis shot today.  Synagis provides antibodies to babies to keep them safe from RSV...which would cause Hope really bad problems if she were to get it.  I feel so much better now that she has her shot.  This is the first shot/vaccine she has received and it is going to be a heck of a week for her.  On Friday she gets her 1 month vaccinations...she wasn't allowed to get them until 6 weeks after her surgery.  I know there are a lot of people that have different opinions on vaccinating, but I am all for it.  I want Hope to be vaccinated against everything. 

That's about it for now.  Please keep the prayers coming for our family and all of our friends.  Prayers everyone that meets Hope knows and everyone could use a good prayer. 

Friday, November 20, 2009

Cardiology Appointment

Hope had her cardiology appointment yesterday with Dr. Prieto and everything looks really good.  I am so happy with how well she is doing and I thank God every day for the blessings He has provided to our family.  Hope is doing better than anyone expected and we know that is God's power.

Hope has been spending her days hanging out in her swing, her bouncer, her bumbo chair, or just laying on the floor with Jerry and Paul.  She is happy and smiling and just enjoying her life so much.  She is getting bigger every day and I love to see her cheeks getting rounder and seeing her with more meat on her bones.  It amazes me whenever I look at her.  She has my eyes and when she looks at me, it is the most amazing feeling in the world.

We have increased the amount of formula we are giving her and she is up to 2 ounces every 3 hours.  She pretty much sucks down the bottle in just a few minutes.  I am thinking we may need to switch to bigger bottles pretty soon...or move up her calories on her current bottles.  We are waiting to talk to the dietitian to see which is the best route to go.

Jerry had to move his 4th birthday party to this weekend because all of his cousins were sick, so Hope will finally be able to meet most of her family.  I just told everyone to make sure that all of them were feeling fine and if someone is sick we would prefer they stay at home.  I know some people may consider us a little too over-protective, but we are really afraid of her catching anything.  After the surgery itself, infections and viruses are the leading cause of death in heart babies.  We are not willing to take that chance.  We have gone through too much and Hope has gone through too much to catch a virus and end up back in the hospital.

I would like everyone to pray tomorrow for baby Travis.  He is having his Norwood tomorrow and I know his mom and dad are really nervous.  Thank you again for all the thoughts and prayers.  Hope is doing better than anyone expected and I know it is because of the thoughts and prayers.

Heartfelt Blogger Award

This morning I was looking at the comments for my last post and I found that Lauren nominated me for the HeartFelt Blogger Award.  Lauren is a beautiful 22 year old that was born with HRHS and shares her story and answers any question a heart mom asks.  Her story is amazing and inspiring and I was thrilled when I found her blog.  I am glad she received the award already or I would nominate her because she deserves this award so much.  Thank you Lauren!

The Heartfelt Blogger Award is awarded to the blogs that make us feel all comfy or warm inside when we read them.

Here are the rules for this award...

1) Display the award logo
2) Nominate up to 9 blogs that make you feel comfy or warm inside
3) Link to your Nominees and leave a comment on their blog telling them about the award.
4) Link to the person whom you received the award

This is really hard for me because I read so many blogs and carepages every day that I could nominate so many to receive this award.

Stephanie gets this award because she writes the most amazing heart poems and her updates are like poetry as well.  It amazes me when I read her blog because there are so many times she writes (much more eloquently than me) exactly how I am feeling.  Braeden is one lucky little man!

Scarlett's Mommy because she shares everything!  Her thoughts, feelings, and the small things that only heart moms understand.  Scarlett is absolutely adorable and I am so happy she is doing so well.

Lisette gets this award because she is an amazing woman who shares all of her thoughts and feelings on her blog...and she is a wonderful woman.  I wish I could give her a big hug right now because she has gone through so much and just lost her beautiful daughter.

Stephanie gets this award because her blog is the first one I found and followed when I was pregnant with Hope.  Even though her sweet Kaia is now an angel, I love her blog and her artwork is undeniable the most beautiful I have seen.

Roger and Nicole because they have shared so much of their journey with everyone.  Travis is having surgery tomorrow, so please pray for this little guy.  He is so darn cute!

Jen and Iggy - CONGRATULATIONS!  Welcome to the world Magnus.  Their blog brought back so many memories of my pregnancy...thank you for sharing.

Alisha gets this award because she inspires me with her blog and Everett is amazing.  He is doing so well and it gives me encouragement just reading their blog.

The NUTS because you have to laugh every day.  Lisa shares so much of herself and her family and always in a way that brightens my day.  She is raising the cutest little nuts around!

Viola's mom because I love to follow along Viola's heart journey and her mom does a great job of sharing their story.

There are so many other blogs I could award this too.  I follow so many and am inspired by so many people.  I also want to thank everyone for following along in our journey.

Monday, November 16, 2009

7 Pounds

Another milestone this week...Hope is now 7 pounds.  She actually weighs 3.18 kilograms and we have to track all of her weight in kilograms.  3.18 kilograms is actually 7 lb and 0.52 oz, so she really weighs over 7 pounds now.  She is eating and gaining like a champ.  I am so proud of her and the progress she is making.  She is showing everyone what a fighter she is and I love every minute of it.  Check out the Snuggin Go in the picture.  It is the greatest thing and I found out about it from another heart mom.  It really holds Hope's head in place in her car seat and she likes being in her car seat a lot better now.  If anyone is interested in getting one, you can find the information here.  The little girl in the Before and After pictures is Scarlett...another little heart baby.  Isn't she just the cutest little girl!

Her physical therapist came today and she is 'above average' for her age.  She is almost at a 3 month level in her gross and fine motor skills.  I almost cried when she told me that today.  After all the pessimistic comments that we have heard prior to her birth as well as after she was born, it is so great to hear how well she is doing.  I see how well she is doing every day and it amazes me that she has any sort of heart problem.  She is just like any other 2 month old baby.  Check her out sitting up in her Bumbo chair.  She loves it!

We didn't get a chance to have the big birthday party for Jerry this weekend because so many of his cousins were sick.  We scheduled a new big birthday party for next weekend.  My family came over this weekend and we had a smaller party with some gifts, cake, and the wonderful weather.  It was in the 60s all weekend and Hope even spent most of Saturday outside.

I am not sure if I will have time to update later this week, but I would love everyone to send out good thoughts and lots of prayers for another heart family.  The DiCarlo family has a little fellow named Travis and he is scheduled for his Norwood (the first surgery) on Friday.  It is going to be a stressful day for Roger and Nicole as they send their little guy for his big open heart surgery and they are going to need all the good thoughts and prayers that you can spare.

Saturday, November 14, 2009

2 Months

It is so hard to believe that Hope is 2 months old today.  She is such a fighter and has seen so many miracles and answered prayers so far in her life and we pray that she will experience many more miracles and answered prayers in her lifetime.  I spend a lot of time reflecting back to times when I was so scared, both before she was born and when she was at Akron Children's Hospital.  I feel like God wanted so badly to show me and make me believe in His power that he answered our prayers and provided miracles galore!

Hope basically hangs out all day either in her swing or bouncer.  There are times when she spends time laying around with Jerry and Paul, but she also has to get in her tummy time every day.  I was surprised when the therapist came over and told me that she needed to get in tummy time.  I just never realized how 'normal' she was because of all she has been through.

On a kind of sad note, we had to change Jerry's birthday party from this weekend to next.  Too many people were sick this weekend and I would feel horrible for him if no one was here for his party.  We are hoping that everyone is feeling better next week so we can have a nice birthday celebration (very late) for Jerry.

I hope this blog finds everybody well...I know the flu is going around and I am hoping it doesn't make it to anyone's house that we know.  This year's flu is really bad and I don't want to think about anyone I know catching it and having to suffer through it this year.

Tuesday, November 10, 2009

Birthday Wishes and Hope Update

Before I start on updating about Hope, I am behind in my birthday wishes for my family, so here goes:

Happy Birthday Dad (November 8th)

Happy Birthday Avaleana (born November 9th to Robin and Jerome)

Happy Birthday Mom (November 10th)

Happy 4th Birthday big boy (November 11th)

Check out the cat...she loves sleeping with Hope!

Check out the kids...the boys love spending time with Hope and she loves to spend time with the boys!

Life has gotten a little busy around here, so the blog updating has been a little late in coming.  I wish I could update every day, but the only time I get a few minutes to update is when everyone is asleep and then all I want to do is go to sleep too.  Hope has really enjoyed being home and has decided that she doesn't want to be fed through the NG tube anymore.  She took it out last week and we haven't put it back in.  No problems with eating and I know we all enjoy life a little more with it gone.  I have to thank a fellow 'heart mom' for her wonderful suggestion on using the bottle nipple to give her medicine.  The syringes are not so easy to use and I felt like she was spitting out some of her medicine and that worried me.  Anne's daughter Avery and Hope were born on the same day and Anne shared her little secret with me...thank you a million times over!

We are still trying to get Hope to gain some weight.  It is slow going, but I know she will get there.  Babies with heart problems seem to have more problems with weight gain than other babies, so I am not too worried.  She is not losing weight, so that is good news.  No appointments this week and that is also good news.  It is such a pain to pack up everything and make the trip to the Clinic and watch Hope get poked and prodded for over an hour.  

The weather here has been great so we have been spending time outside.  Of course, Hope is dressed in many layers so she doesn't get cold at all, but it is such a miracle that she is able to get outside at all.  I prayed a lot before she was born that she would be able to see our beautiful yard...God answered my prayers.  She loves to watch the few leaves that are left on the trees and she stares at the blue sky and clouds.  I remember sitting outside when I was pregnant thinking about spending time with her and the boys out by the swing set and words can't even describe how wonderful it feels to be able to do just that.  God is GREAT!

Quick story because I am going to post pictures of this wonderful husband decided to try and trap the muskrat that has been running through our yard and tearing up the lake.  He set the traps and little Jerry has been checking them every day.  Yesterday he was so happy...'daddy caught it'.  I ran to the door and looked.  Sure enough, daddy caught something...a SKUNK.  I was rolling on the floor laughing (well not really, but it was the funniest thing because I was picturing how he was going to release it without getting sprayed).  Surprising enough he was able to get it freed without getting sprayed, but the skunk did spray and the yard still smells.  

Thursday, November 5, 2009

First Follow Up and NG Tube Update

Hope had her first follow-up appointment this week at the Clinic.  It started with a chest x-ray which was fine.  After that she had an echo...after she had her breakfast.  I tried to explain to the ultrasound technician that she had just finished eating and she might want to wait a few minutes before she started.  She decided to go ahead with the echo and of course Hope decided to throw up her breakfast on her.  I hated that Hope threw up, but I wish the tech had listened to me.  After the echo I decided to feed Hope another bottle and we were able to spend 15 minutes letting her digest the bottle before Dr. Prieto came to see us.  I loved hearing the words "her echo looks wonderful".  I had been dreading seeing her cardiologist because we always seem to get bad news when we see the doctor, but this time was great.  I felt like my little girl was showing everyone how strong she is and how much God is laying His hands on her!  We also met with the cardiology nurses and her incision looks fine and it doesn't look like she has/had an infection at all.  All in all, the appointments all went really good.  After our appointments I went to step-down and spent a few minutes with Erica and Kylan.  Kylan looks great and it looks like he will be going home this week.  I am so excited for Erica and Paul...they are great parents and Kylan will be so much happier at home.

The pictures I am posting today are special because you will notice that Hope does not have an NG tube.  She has been pulling it out a lot lately and we are going to test her today and see how she does without it.  She will need to take all of her food and medicine by mouth and we will be able to leave the NG tube out.  She has been doing so well lately that I am thinking she doesn't need it anymore...and I am sick of replacing it.  It isn't nearly as hard as I thought it would be, but I just don't like to know that I am the reason my little girl is crying.  She hates to have it put back and I think maybe she will realize that if she takes everything from the bottle, she won't need it anymore.  It will make all of us much happier.

Please keep us in your prayers as we know every day we have with Hope is a miracle.  We have cherished every minute and realize that life is so precious.  There are so many lessons we have learned on our journey and so many more we will learn.  We hope our journey shows God's miracles in life and helps everyone embrace life more fully and cherish everyone that crosses your path...every minute of every day.