Wednesday, January 27, 2010

10 Pounds---YOU READ RIGHT

Hope has finally hit the big 10!!!  We are so excited that it is hard to find the words to express how we are feeling.  She is getting so big and so is her personality.  She smiles all the time (except when I have a camera) and loves to stick out her tongue.  She is still enjoying her rice cereal, but we only give it to her a few times a week.  We are still trying to make sure she gains more weight for her next surgery and don't want her liking the cereal too much.  Hope is also doing a lot of rolling around, although she refuses to roll from front to back.  She really doesn't enjoy tummy time much at all and trying to get on her back just makes her really mad and frustrated.  I know she will eventually get the hang of it.  We are breaking down tonight and actually taking Hope to the grocery store with us.  I know she has to be sick of being in the house all the time and most of the time when she goes out she is going to the doctors.  I am hoping that if she goes to a few different places it might not be so bad when she goes to the doctor.  We shall see....

Some sad news that I hate to write about...let alone think about.  Two CHD babies got their angel wings this week.  I am deeply saddened every time I read about another baby earning their wings and I spend days crying for their parents.  I pray every single day for all the CHD babies and their parents and I am also praying extra hard for a cure to all this heartbreak.  One day I would love to see a cure for all the heart problems and never have to read another post about a baby getting its angel wings from a CHD.  I would appreciate if everyone would say a prayer for Josiah and his parents.  He is an amazing warrior in the CHD fight and lost his battle...he will be missed so much.  Rest in peace Josiah.  Please keep Ruby's parents in your prayers as well.  Ruby is now an angel, but she fought really hard to stay here on earth with her mom and dad.  A nasty lung infection interrupted her sweet life and I have been praying so much for her since I found out. 

I hope everyone is keeping their children close and spending as much time with them as possible.  As a mom, I can tell you that priorities definitely change and I find myself living in the moment more than I ever did before.  It is amazing how much you miss during the day...every little thing is such a joy.

Thank you all for keeping us in your thoughts and prayers.  We appreciate all of the thoughts, prayers, and especially knowing that there are many people out there that are following us on this journey through life.

Wednesday, January 20, 2010

Cardiology and Rice Cereal

Today was Hope's every other week cardiology appointment.  No echo today which meant that it was a quick and easy visit for everyone.  She did really good for most of the appointment, but decided to get fussy when Dr. Prieto tried to listen to her heart.  I don't think she likes to have anything put on her little chest.  The cardiac nurses also decided to pull out her one stitch that has not dissolved.  Hope and I have very sensitive skin and I think that makes the stitches that much harder to dissolve. Nothing much has changed and we did not really discuss Hope's next surgery...other than she is doing well and it is not yet needed.  Her saturation levels have stayed about the same - high 70s to low 80s and they won't address surgery until they hang out around the mid 70s.

We went to the pediatrician last week to get Hope's 4 month vaccinations.  Solid food was discussed and we decided to try rice cereal.  Hope really did well and was able to get a few teaspoons down.  We didn't try much or for very long because she really needs to get her calories from her fortified formula so she can gain more weight.  They just want her to try and learn how to eat solid is more developmental for Hope than actually getting her food from solids.

Not too much else is going on around our house.  It has been as quiet as it is going to get with 3 little ones under 5 years old.  The boys love to spend time with Hope and now that she is smiling, they love it even more.  She is trying to actually laugh and I can't wait to hear the first laugh!

Please keep our heart babies in your thoughts and prayers.  I have read through some of the boards that I belong to that a few babies have earned their wings.  I am also extremely sad when I read about that happening because I can't imagine how hard it is for the parents.  The babies are in heaven and have a whole heart, but their parents are here on earth and suffering from a broken heart.  There are also a lot of little ones that are gearing up or just had surgery...please keep them in your thoughts and prayers as well.  I could probably use my whole blog space to keep up with all the heart babies I follow.

Thursday, January 14, 2010

4 Months

Time is flying by and we are enjoying every minute of every day.  I am totally amazed at all of the changes we have seen in the last 4 months.  Hope is spending her days smiling and cooing and it is so wonderful to see and hear.  She is still in the 9s...I never knew it could take this long to gain a pound.  I swear I can gain a pound just thinking about eating a brownie and it is taking Hope so long just to gain a pound.  I never knew how frustrating it could be to watch your little girl try and gain weight.  I just really want her to get to at least 10 pounds (preferably 12) before her surgery.  I am not sure if that will happen, but we are praying.

Hope had her vaccinations today and seemed to do fine with them.  She slept most of the afternoon and evening.  The doctor's office weighed her in at 9 pounds 11 ounces, but I am pretty sure their scale is wrong.  At home she weighs about 9 pounds 4 ounces, so we still have quite a ways to get to 10 pounds.

There are a lot of heart babies having surgery or getting ready to have surgery.  Please keep them in your thoughts and prayers.

Thursday, January 7, 2010

Cardiology Appointment

Yesterday Hope had another cardiology appointment and I can tell you it was one of the hardest.  We were there for over four hours because Dr. Prieto was so backed up in her appointments.  We started the day with weight and measurements.  She always does pretty good with these and has been gaining and her pulse ox and blood pressure is good.  After that our day of craziness began.  I am not usually a complainer, but yesterday I just felt it really necessary to state my opinion to many people in the office.  The echo was trying to say the least.  There is a fellow (cardiology student) that started doing her echo.  She did fine for about ten minutes.  Then she and I both started to get irritable.  After an hour, I put my foot down.  She literally cried for an hour straight.  I don't let her cry at home for more than one or two minutes and an hour seemed absolutely ridiculous to me.  I know that people need to learn and Hope has a different anatomy, so she is a good training case.  They did that in the hospital a lot and it didn't bother me one bit.  But...when my daughter is obviously in pain...I draw a line.  I spoke with Dr. Prieto about my concerns and I am hoping my suggestions will be taken seriously.  I suggested that the regular echo tech take the pictures that are necessary for Dr. Prieto as soon as we get in the room.  After that, if Hope is still in a decent mood, I don't mind people using her for training.  But...when they spent all that time training the new guy and still didn't get a good picture of her pulmonary artery...that is not good.  I am now off my soapbox...sorry, but it really was hard on my mentally to see Hope crying that much.

No talk of her Glenn and Dr. Prieto likes how she is gaining and how well her oxygen saturation is looking.  She is usually in the high 70s and she thinks we can hold off on the heart catherization until her sats stay in the mid 70s consistently.  Hope is also getting over her least it seems that way to me.  Her nose is not nearly as congested and her coughing is not too bad anymore.  I am so glad that she didn't get any sicker and I know that God is definitely looking out for her.

Here is another poem Stephanie wrote and it reveals my feelings much better than I could ever write them:

My fingers run along the line
Upon my daughter's chest
I ask her then
"Who loves you"?
Why mommy loves you best

"Do you know your brave and strong"?
"And hope shines in your eyes"..
Do you know each day with you...
Is like a new sunrise?

I wonder if you understand...
Just how you've changed my heart..
My prayer to God will always be...
"Don't ever let us ever part".

Do you know...sweet daughter of mine...
How very loved you are?
I could search for all my lfe...
But I need not look far.

For beauty rests within my midst...
In the heart of one small girl...
You've overcome so very much...
And live each day with joy.

Who loves you most I ask again...
A her ear....
Life has few sweet moments when...
Things seem so very clear.

Why mommy loves you silly girl...
She thinks you are the best...
You laugh at me in answer...
I know that I am blessed.

~Stephanie Husted

Thank you for keeping our family in your thoughts and prayers.  We really appreciate it and know that God has been hearing and answering our prayers.

Wednesday, January 6, 2010

Proclamations - a call to action

I have decided to become more involved in CHD awareness.  I want to bring as much awareness as possible to Congenital Heart Defects in order to increase the research and funding so that our children will have more options and updated research on heart defects.  I belong to the Congenital Heart Information Network as well as many other organizations.  This year I plan to work with them to bring awareness to CHDs every day, but especially the week of February 14th.  I have already received Proclamations from the State of Ohio as well as York Township. 

I am asking that anyone that reads this blog to please contact your State as well as the city or township you live in to see if they will proclaim the week as CHD Awareness Week.  You can find more information here.  I would love to see one from every state and as many cities as possible!  I also have a button on my blog that you can click on and copy from the website.

Please spread the word on CHDs and bring awareness to as many people as possible.  The more people that are aware of CHDs, the more funds we can make available for research.  Remember...less than 30 years ago all children with HLHS were sent home to die or just died shortly after they were born. We have come so far in such a short amount of time and hopefully someday babies born with HLHS will be fixed completely and not have to live with 1/2 a heart.

Thank you for your support and God Bless!

Monday, January 4, 2010

Hope's First Cold

Something we have been trying to avoid since we brought Hope home has finally happened...she has a cold.  She is coughing and sneezing and just plain congested everywhere.  I am a nervous wreck about this, but the cardiology nurses are telling me she will be fine.  Her color is a little off, but her oxygen saturation is fine and she is eating the same as before without any problem.  She has a cardiology appointment on Wednesday and I am hoping she will remain this good until her appointment.  I hate running to the cardiologists when she is not scheduled for an appointment.  It makes me really nervous and afraid for my little girl.  There are times she looks good and like nothing is wrong...then when she is awake and coughing and her nose is congested it is really hard.  She just looks so miserable at those times and I feel like a horrible mommy.  No one else here or that has been in contact with her is sick, so I have no idea where she got this...not that it matters.  I am actually kind of glad that no one else is sick...that would be much harder. 

Please keep Hope in your prayers that she gets over this cold real soon and doesn't develop any other infections or problems from the cold.  A little prayer for me would be nice too as I am stressed, worried, nervous, and just plain scared for my little girl.

Sunday, January 3, 2010

Happy New Year

2010 has started off really well.  Everyone has been doing really well and we have been spending time with our families.  We have a lot to be thankful for and the dawning of the new year brings it all into perspective.  It is amazing what we went through last year and we have met a lot of new friends and learned so much about the heart.  I usually try to think of at least one memorable moment from the prior year, but 2009 brought so many moments it is hard to pick just one.  I will share a few memorable moments here and you can see that we have had many highs and lows in 2009, but we made it and our lives our changed because of 2009:

Happiest Moments

Finding out I was pregnant was one of the happiest moments last year.  It was such a surprise and unexpected, but we were so happy and knew that our lives would be blessed.
Finding out we were having a girl.  We have two boys and were told that Hope would be a girl too at an early ultrasound.  When we found out she was a girl, we were ecstatic.  As many of you know, Hope is a name we picked out long before we found out she would have heart just makes her name that much more significant.
The birth of Hope was a miraculous moment and our families were all there to celebrate with us and be involved in her christening.  It was a profound moment in my life that I will never forget.  I still remember every minute of that day.
The day we found out Dr. Mavroudis would perform the Norwood for us.  After the devastating news from Akron Children's Hospital, just hearing the words that he would take the chance was amazing.
The day of Hope's surgery...this is both a happy and scary moment, but looking back it seems more happy. 
The day Hope came home from the hospital was another amazing day in our lives.  We were worried about bringing her home, but it has been the best for her and our family.

Scariest Moments

I will always remember when we heard the news that Hope had Hypoplastic Left Heart Syndrome.  It was unreal and we really didn't understand what it meant.  Even after a picture and hearing all about it, we still didn't truly understand what it meant.
Hearing the words  'you should take your baby home (to die) because we don't think she will survive open heart surgery' is something I will never forget...I remember it too well somedays and I can't imagine ever hearing those words again.
Seeing Hope being wheeled down the hall on her way to surgery and then waiting for hours (although having my family there made everything a lot better).  I can't describe the feelings I had on that day and wish nobody ever had to go through that with their child.

Looking back over the year, I am really glad that I have more happy moments.  The scary moments were scarier than anything I have ever been through in my life, but the happy times made up for it in so many ways.

I hope everyone has a happy and healthy New Year!