Hospital Again...

Rebekah and I are heading to the ER this afternoon. Her sats have not improved from yesterday, and she is laboring to breathe more. We are going to have some tests run, possibly another chest x-ray and a decision about where to go from here. I'm guessing we will at least be kept overnight while we try to get this respiratory illness under control.

Thanks for praying.

Nancy

CHD

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held her, I'd waited so long,
It's knowing that I need to help her grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking her sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do her nails look blue?
It's cringing inside at what she's been through.
It's dozens of call to her pediatrician
He knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching her sleeping; her breathing is steady.
It's surgery day and I'll never be ready.
It's handing her over, I'm still not prepared,
It's knowing that her heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that she'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching her chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.

This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)

Long Awaited Update

Yes, I know, Rebekah's adoring fans are longing for an update! :) So, I will do my best to fill you all in.

Rebekah came home from the hospital on the 31st of January through ice and snow. Although nowhere near the amount of snow that was predicted, the boys still enjoyed the inch or two that we did have and were very excited that Monday was declared a snow day.

Aaron, Caleb, Mommy, Justin, Daddy, Rebekah and Zachary

As you can well imagine, everyone was excited to have Rebekah back home. The boys practically fought each other over who would get to hold Rebekah and help with her. In a good way, of course! :)

Rebekah did very well for the first week or so that she was home. On Tuesday, we had a cardiology appointment with Dr. Lucas. Rebekah's heart function continues to look good, and we are so pleased by that. At least the extra stress of trying to breath has not had an effect on her heart. We do have a new date scheduled for Rebekah's heart catheterization. If all goes as planned, we will be leaving for Charleston on March 8th, to have the catheterization done on Tuesday, March 9.

Zachary and Rebekah

We also saw Rebekah's pediatrician on Thursday of last week. Rebekah has been exhibiting some symptoms of c. diff once again, so she is back on Flagyl to treat it. Incidentally, during Rebekah's GI appointment today, the nurse practitioner said that c. diff is even harder to get rid of (and easier to relapse!) in kids who have a compromised immune system. That could explain why Rebekah is fighting it again so soon after we thought she was over it. Anyway, our pediatrician also decided that Rebekah should remain on oxygen until we have the heart catheterization in March. He feels that since Rebekah really couldn't get off in the hospital, he would be more comfortable waiting to see what the doctors in Charleston decide about the need for oxygen. As it turns out, he made the right decision!

Justin and Rebekah

Now fast forward to this past Sunday. Rebekah started working a little harder to breathe and seemed to be struggling a bit more. Nothing major, no severe distress, just a little heavier, faster breathing now and then. But, it was enough for me to notice....and enough to keep noticing it throughout Monday when she definitely started sliding downhill.

Aaron and Rebekah

So this morning I called our pediatrician and explained what I had been watching the past couple of days. By today, Rebekah was definitely having brief periods of moderate distress - tight coughing, wheezing, significant retractions and fast, heavy breathing. Dr. DeMoss called in a prescription for an oral steroid to help open Rebekah's airways to see if that made a difference. Then we went to our scheduled GI appointment this afternoon. From a feeding standpoint, Rebekah is doing well. The nurse practitioner made only some minor increases in the amount of formula Rebekah is getting in her overnight feeds.

Caleb, Daddy and Rebekah

Our nurse practitioner listened to Rebekah's breathing and watched her (at that time) mild respiratory distress and decided to order a chest x-ray while we were there. Radiology is in the same building, so it would save us a trip to the hospital if our pediatrician had decided to have an x-ray done. The x-rays are still clear - no different from the last x-ray we had taken at the hospital before we left. That's good news! However, when the nurse practitioner checked Rebekah's O2 sats, we found that she was only barely satting around 80% and frequently dipping to 77-78%. And that was with the 200cc's of oxygen she was using. So, our NP called Dr. DeMoss and he decided to increase Rebekah's oxygen to 300cc's, continue the oral steroid for 24 hours and see if there is any change - hopefully for the better!

All dressed up!

Tomorrow we have an appointment with the infectious disease doctor. He follows Rebekah's immune system and troubleshoots any potential problems we may have with her low immunity. We will be re-checking her O2 sats while we are there to see how we are tomorrow and then a decision can be made to continue the course of treatment we are on, or return to the hospital. So far, increasing the oxygen has seemed to do a lot to relax Bekah's breathing tonight. She isn't struggling as much and looks better overall. We will see what tomorrow brings!

Oh, Rebekah was weighed and measured at her appointment today. This is the "official" weight and measurement that we compare using the same equipment each time. Rebekah is now 11 pounds and 8 ounces and is 24 inches long. Accounting for a three week stay in the hospital, I would say that's not too bad!

For tonight, we are going to rest (hopefully) and keep a close eye on Rebekah. If there is a change in the amount of oxygen Rebekah needs (for the worse), or if her distress worsens in any way, we have orders to immediately head to the hospital. I'm hoping the increased oxygen and steroids will help keep us at home this time around!

Please keep Rebekah in your prayers, and specifically that she will be able to fight this respiratory illness. Also, please keep our friends, Erin and Milo, in your prayers as they are adjusting to life without their sweet Josiah.

Nancy

CHD Awareness

In honor of CHD (congenital heart defect) Awareness week, I wanted to post some facts that I found:

• According to the March of Dimes, congenital heart defects are the #1 birth defect. It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. To put CHD in better statistics: about 10,830 babies are born each day and out of those babies about 411 are born with some sort of birth defect. Out of those 411, about 87 are born with CHD.

• Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

• More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

• Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

• Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured."

• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

• It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained specialists.

In our family, CHD has affected 2 of our 5 children. Obviously, Rebekah has a complex CHD called Truncus Arteriosus, but her brother, Aaron, was also born with two mild heart murmurs that resolved themselves by his fourth birthday. CHD is much more common than you may think!
We are very thankful for all of the research that has been done for children like Rebekah with CHD. Thirty years ago, Rebekah would have been sent home with us after birth, and we would have been told to enjoy her for the few months that we were able to. She would have had a less than 10% chance of seeing her first birthday, let alone the rest of her life. The surgeons and doctors nationwide who give of their time and talents to help children with CHD have our utmost respect and appreciation. Thank you for all that you do!!

New Routine

We are back at home and trying to settle into a new routine. It is probably one of the hardest adjustments I have had to make. With Rebekah's feeding and medication schedule, I am up quite a bit at night and do not have the luxury of naps or sleeping in later in the morning. Just something else we are working out!

I have pictures of the boys with Rebekah right after we got home, but, honestly, I am too tired to get them uploaded and posted. So, I will hopefully get them up tomorrow.

Rebekah is doing about the same. She still has a lingering cough that we are trying to get rid of. Her feeding is going well, and the g-tube is still working well. She has been more fussy today for no reason that we can determine.

I'm off to bed to try to catch up on some sleep. Keep praying for us and for Rebekah!

Nancy