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.

Monday, November 2, 2009

Catching Up

It has been almost a week since we brought Hope home and what a wonderful time we have had.  It has taken a little while to get the hang of everything...from late night feedings (I forgot what they were like), medicine, NG feedings, and the countless diapers.  I feel like I am finally getting into the groove of everything and we are starting to get more organized. 

Jerry's mom and dad bought Hope the most beautiful swing and she absolutely loves being in it.  She spends her days either in the bassinet, swing, or bouncer (or my arms of course).  The physical therapist came yesterday and now she gets to spend an hour a day doing tummy time.  The therapist modified it a little, so I am not just putting her on a blanket on the floor, but she will be a little more upright when doing tummy time.

We had our first NG tube replacement yesterday.  Hope decided to pull it out early in the day...yeah, I know she pulls at everything, so it was just a matter of time.  I also think that she decided she didn't want her food that way anymore.  She has been taking more and more from the bottle and has been taking full bottles (ok, they are only 1.5 ounces) several times a day now.  Anyway, Jerry and I put a new NG tube in last night.  It was a lot easier at the hospital! 

The boys went trick-or-treating this past weekend and Hope and daddy spent a nice quiet evening together.  Jerry left the light on and no surprise...we didn't have any trick-or-treaters come to the house.  The boys and I went to Brook Park with Destiny and had a great time with family.  I am posting some pictures of the boys because I didn't buy Hope a costume this year.

We are all going on Thursday for our H1N1 vaccinations (well, not Hope...she is too young).  We have all had the regular flu vaccines and I want to try and make sure we stay as healthy as possible through the winter.  We know people have different opinions on getting the flu shot and appreciate all of the family members who have gotten their shots to protect our daughter.

I know it sounds repetitive, but thank you to everyone!  We are so grateful for all the thoughts, prayers, and support that everyone has given us.  We appreciate you keeping our family in your prayers.  We have made it a long way and we still have quite a journey ahead.