Finally going home

Well...the cath didn't go exactly as planned. They were not able to get access to her veins and arteries through her groin. This means that they were only able to get pictures through the artery in her neck. Dr. Prieto assured us that it was no big deal and happens sometimes. It means that for her future caths they will know this and try to get access other places. Her is how we have spent the last few days:

Friday: Got to the hospital at 6:30 am. They tried to start IV fluids around 7:45 am and could not get an IV. I went back to the cath lab with Hope (only one parent is allowed in there). They put her under and then I had to leave. No updates until 11:00 am when I asked what was happening. I received the above news. After that we were hopeful that everything would be fine and it would only be a couple more hours. At 3 pm, Hope was in recovery. She was NOT happy! She was in a lot of pain and her sats were really low. Dr. Prieto was kind of worried about her sats and decided it was probably best if she stayed overnight for observation. We knew this was a possibility, so no big deal. Up to step-down we went...planning to come home on Saturday morning.

Saturday: Talk about bloating. We knew they were giving her extra fluid because of her kidneys, but she weighed 400 grams more than the day before. She doesn't gain that in a month, so we knew we had to spend the day trying to get the fluid off of her. The fluid was also affecting her sats...which means she was put on oxygen through a nose cannula. She hates that and I don't much like it either, but it was needed as her sats were running in the 50s...usually they are in the high 70s or low 80s. By 6 pm, we knew we were here for another night. Marilyn and John brought the boys up for dinner and they went home with dad...at least one of us got a good nights' sleep. I stayed with Hope and worked with the nurses to get her sats up while she was on room air. Around 8 pm, I pulled out the nose cannula and she was officially on her own. She did really well all night with her sats staying in the high 60s and low 70s. That was good enough to let her come home.

Sunday: We are almost officially discharged! Still waiting for daddy to get here to pick us up, but I am sure they will have the paperwork done by the time they get here.

We also have a date for the Glenn...March 8th. A week from tomorrow. I will write more about that later, but yeah...I am scared!

Tomorrow

Tomorrow is the day we take our sweet princess for her heart catheterization.  It is a huge day for us and emotionally draining.  We know it is necessary and that her next surgery is necessary as well.  It doesn't make it easier to know that we will be handing Hope over to doctors in the morning where she will be put to sleep and have to be intubated.  We have had her home with us for so long and she is such a 'normal' 5 month old baby.  I found the following poem from Stephanie Husted and it really hits home for us today!

Waiting...Hoping...Somehow Coping 

Do I really have to do this?

Why can't I just pretend

That she is just a healthy child

No broken heart to mend.

Why must I watch her closely?

And wonder everyday

If God's plan is a life with us

If God's plans let her stay.

A perfect plan...I know this
She's loved...I know that too
Yet, still I wish I could prevent
All that she must go through.

It's drawing ever closer

That all consuming date

And there is nothing I can do

But love her as we wait.

We'll soon be in that "waiting room"

It just does not seem real

I cry, I vent, I hope, I love

I'm not sure what to feel.

I'm scared, but I am thankful

for all of you who pray

I trust that God will hear your prayers

On our daughter's surgery day.

So I await her future

As I have from the start

With grace along this journey

And hope within my heart.

Change of Plans

So, we were all set to go tomorrow for Hope's heart catheterization. We had the bags ready, no sleep, the boys were taken care of, and we were as prepared as possible. Then we got a call from Dr. Prieto's secretary. Travis called and said that Dr. Prieto had an emergency come up and has a catheterization on another little baby tomorrow and it is an emergency situation. I guess it is kind of good that Hope is not considered an emergency, but I was kind of hoping to get it done and over with. Now, I will have to spend another nerve-racked day tomorrow thinking about the catheterization. She will have to have IV fluids because of her kidney problems and I am not looking forward to that either. I am actually not looking forward to any of it. So, I ask that you keep us in your prayers on Friday...extra prayers if possible. I would also like some additional prayers that Hope does good enough that she can come home Friday night, rather than us having to spend the night in the hospital. Weekends are never good at the hospital and I am sure it will take forever to get discharged on a Saturday...it takes long enough during the week.

I will update on Friday to let everyone know how Hope is doing.

Thank you for checking in on us and keeping us in your thoughts and prayers.

5 Months, Happy Heart Day, and Happy Valentines Day

So much to celebrate today!  Hope turned 5 months old and is the cutest little thing.  She is growing up so much every single day.  She has the cutest smile and loves to show it off to everyone.  She is teething and I am fully expecting one or two to pop through in the next month.  She has started 'talking' and I truly think that when she masters words, she will never stop talking.  She can carry on a 'conversation' for what seems like hours at a time. 

We have been trying to bring as much awareness as possible to CHDs this week and I am hoping at least one person has learned more about how common they are and the affect that have on so many families.  I wish there were more I could do and I know that I will be doing more next year. 

We have moved Hope up to a higher calorie formula this week.  She has not been gaining as much as the doctors would like, so they have increased her calories to 30.  This means that she get more vegetable oil mixed with her water and formula...sounds gross to me, but she seems to be doing fine.  She was on a different kind of oil and I just can't believe that vegetable oil is real healthy, but we were told that it can pack on the calories and she really needs that right now.  If she would sleep a little more, she would probably gain some much needed weight.  But...nope...she likes to be awake and playing during the day.  She will take a couple of 1 hour naps, but nothing more.  She is sleeping through the night and has been for a while, so that is wonderful.  The naps would help her gain weight, but I can't seem to get myself to force her during the day.  Hopefully the increase in calories will get some weight on her.

Not much new has been happening....her cath is scheduled for the 25th and the closer it gets, the more nervous we get.  Please continue praying for all the heart babies that are home, at the hospital, or in heaven. 

I wanted to include some pictures of the boys as well as the beautiful trees that were dipped in ice...they are magnificent!

Valentine's Day Poem

I just had to post this wonderful poem written by Stephanie Husted.  She is amazing and can put my feelings into words so much more eloquently than I ever could.

It's today that we honor every heart that is broken,
Too many are gone now, some words left unspoken.
A good fight is fought but still many don't stay,
So we have all learned to just live for today.

I once spent this day with sweet love cards to give,
Now I think of the children, who fight just to live.
40,000 babies affected each year
Inciting in parents the very worst fear.


The child you've wanted for so very long,
May never come home, for his heart is not strong.
Every second seems to echo an eternity,
Will my child survive this to come home with me?

I won't say it's been easy, I can't say it's been fair,
I will say through it all, HE has always been there.
Yes, on Valentine's Day, I do celebrate love,
Today my child lives, and today that's enough.


May we remember what today means to so many, and embrace life for what it is...a gift.

~Stephanie Husted

Heart Catheterization

The time is finally upon us.  The first step toward Hope's next surgery is a heart catheterization.  Edited to add that Hope's catheterization is scheduled for February 25th.  I am going to start by posting what a heart catheterization is for the non-heart followers:

This is an invasive imaging procedure that allows your doctor to evaluate heart function.  During a cardiac catheterization, a long, narrow tube is inserted through a plastic introducer sheath (a short, hollow tube that is inserted into a blood vessel in your leg or arm...Hope's will be in her leg).  The catheter is guided through the blood vessel to the coronary arteries with the aid of a special x-ray machine.  Contrast material is injected through the catheter and x-ray movies are created as the contrast material moves through the heart's chambers, valves and major vessels.

There are risks to this procedure, but we are praying Hope avoids all of the possible risks.  We are nervous and scared about the next month because after the catheterization, Hope will be scheduled for her bi-directional Glenn surgery.  There will be plenty of time to think about both in the next few weeks, so I am going to stop focusing on them now and move on to catching up with other stuff around here.

Hope is still doing great...one of the reasons they are scheduling everything.  Dr. Prieto wants her to have the catheterization and the Glenn before she starts showing signs that she really needs them done.  She said it is always better to do them before it is an emergency situation.  Hope's saturation levels have pretty much stayed the same and she is still gaining...although slowly.  They are a little concerned because her gain is slow, so the nutritionist will be calling later this week to see if we will move her calories up a little.  I'm willing to try anything, but I know that part of the reason her gain is so slow is because she is awake all the time.  She takes 2 naps a day and neither one is longer than an hour.  She is really active when she is awake and for any other baby, it is great.  For a heart baby...she needs the rest to help her gain weight.

Destiny and the boys are loving on Hope all the time.  It is so cute to see Jerry playing with Hope and talking to her.  He can get her to smile any time of the day.  Paul and Hope get their diapers changed together and spend the whole time smiling and 'talking' to each other.  Paul can be a little rough sometimes, but he always says sorry when he is a little rough.  Destiny is great with Hope and can make her laugh and talk all the time.  Every day is so special and I am treasuring each and every minute watching all of them grow up.  I know everyone says that they focus a lot of their attention on their kids, but I have been actively focusing on it every day.  I find even the smallest details of the day make me laugh, smile, and sometimes cry.  I am so much more aware of everything!

Please keep us in your thoughts and prayers and spread awareness of Congenital Heart Defects whenever you have the chance.

CHD Awareness Week

Yesterday was the start of CHD Awareness Week.  I am hoping everyone that reads this will know how important it is to bring awareness to Congenital Heart Defects.  Hope has been affected as have many other children.  Before Hope was born, we knew very little about CHDs...even though Jerry's sister was also affected by a Congenital Heart Defect that was repaired shortly after she was born.  When we were first told there was something wrong with Hope's heart, we naturally assumed it was something that could easily be repaired.  We were not aware of how serious some heart defects could be.  We certainly didn't know that so many children are affected by this every year. 

Please help us to spread CHD awareness, and pass this information on to at least one other person:

• CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).

• 1 in 10 of those born with a CHD will have a fatal defect.

• In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

• The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.

• There are approximately 35 known Congenital Heart Defects.

• Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

• There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.

• With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

• Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

• Only about 30% of the children who need a heart transplant receive one in time.

• About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

Education is the first step in helping these children live happier, healthier lives!

A HUGE THANK YOU

We have received so much help and Hope has received so many presents from so many people and I really wish I could find the time to get cards out to everyone.  I will one day...I just know it.  I want to thank everyone for all of their kindness, good wishes, and presents for Hope and for our entire family.  I want to especially thank a wonderful friend that I made while we were both awaiting the birth of our beautiful daughters.  Lisette is an amazing woman and has endured so much in such a short amount of time.  Our paths crossed because we were both given very grim diagnosis' for our daughters and were able to share a lot of the same feelings throughout our pregnancies.  It was a very difficult time in both of our lives, but I think we both grew a lot emotionally and spiritually.  Unfortunately, Lisette's little girl, Sami, did not survive very long after she was born.  I was and still am an emotional wreck when I think about this because she was born after Hope and I prayed like crazy that she would be spared as well.  I had convinced myself that if Hope made it, Sami would too.  Through everything Lisette has been a huge support for me and imagine my surprise the other day when I get a big box in the mail.  Lisette sent me some very special presents and I am so grateful for the presents and for having the chance to meet such a wonderful woman.  I can't imagine everything Lisette has gone through and then finding the energy to send Hope and our family presents.  I am speechless thinking about it right now.