Looking Back

Sometimes I like to look back at my blog and see what we were doing this time last year...or two years ago.

March 31, 2007 - Eli is so little...still looks like a baby!!
March 31, 2008

Dr. Henley

Eli decided to play doctor with Chase today. Chase was a very good sport!

Mom...The Instrument Maker

As moms, we have many roles....cook, housekeeper, doctor/nurse, teacher, etc. Sunday, I was an instrument maker. Eli decided that he wanted a cello and a drum. Here are my attempts at making instruments....Eli was satisfied.

Easter Cookies

It's a little early, but Eli and I made some Easter cookies yesterday. We had lots of fun and all the cookies are gone today! Thankfully we did not make the entire batch of cookies....even if we had, I'm sure they would still all be gone! : )

Eli enjoyed playing in a mountain of flour while I was cleaning our mess.

Gaining Weight

We are working hard to put weight on Chase. It is so hard for heart babies to gain weight, especially babies with complex CHD and heterotaxy. I think we are making a little progress.

A New Place To Sit

Upon Eli's request, I placed Chase in Eli's shopping cart and pushed him around. Chase and Eli thought it was so funny!

Gorgeous Easter Cookies!

Today Eli and I were in the car and talking about Easter. Here is the conversation....

Eli: I want to make Easter cookies

Mom: OK...what kind of Easter cookies do you want to make?

Eli: I want to make egg cookies and flower cookies and Jesus loves me cookies and tree cookies and plant cookies and snowman cookies and mommy cookies and monster cookies.

Mom: Mommy cookies?

Eli: Yes

Mom: What do mommy cookies look like? {Thinking this is a very risky question}

Eli: [No Response]

Mom: Eli, what does Mommy look like?

Eli: [with lots of sass in his voice] You look gorgeous!

I just laughed and laughed! I think that is the funniest thing he has ever said!! : )

Congenital Heart Futures Act

Congenital Heart Futures Act just introduced! We need your help!

Act Now By Contacting Your Senators & Congressman!

Last week the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support.

To learn more about the bill visit: http://durbin.senate.gov/showRelease.cfm?releaseId=309944

However, we still need your help. Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House.

It just takes a minute - here's how you do it:

1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses. (In Texas the Senators are Kay Bailey Hutchison and John Cornyn.)

2) Draft your email - (Templates below)

3) Make your letter personal to you. The template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started.

4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it!

If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort.

TEMPLATE

Dear [Lawmaker name here]

I am writing to ask for your help in making a brighter future for all those born with heart defects. Recently, the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570)and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country's number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.
-----

[Insert 2-3 sentences saying why you care - some examples:]

From an adult patient:
Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, "we just don't know". The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.

For a parent:
My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.

For a family member or friend:
My grandson was born with a complex heart defect and underwent three open heart surgeries before he was three. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to help us help him do well as he gets older. Please help me help my grandson survive to become a healthy, productive parent and grandparent.

From a health care provider:
As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.
-----

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thanks in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,

[name]
[full mailing address]
[email]

That's My Boy!

Here's what happens when you have a son that LOVES lawn equipment, LOVES being outside, and is learning to use the potty.

He also LOVES Fun Dip....hence the green hands and multi-colored face.

6 Month Check Up & Starting Solids

Chase had his 6 month check-up on Wednesday. He weighed 13 pounds, 15 ounces, and was 25 3/8 inches long. He's not on the chart in weight (one ounce short) and he's in the 25th percentile in height. When Eli was 6 months old, he weighed 17 lbs, 7 oz. So, Chase is quite a bit smaller than Eli. The doctor is not concerned about his weight. He is gaining and is not falling lower on the chart. We'll see what his cardiologists says next month.

Chase is sitting, but needs a little help with balance at times. I am so happy with his progress and look forward to seeing this little guy grow and develop! : )

Chase was approved to start solids this week. We started with rice cereal and bananas. He is not a fan of either. Today we tried pears....same story. I thought he would love eating b/c he loves to watch us eat. He licks his lips over and over as we are eating. I'm sure he'll get there, but for now, he's not a fan! A few pictures from the attempt to give him some pears.....

Chase always looks very confused when I put him in the highchair.
See....not a fan!

A Happy Good-Bye!

After 5 months, we no longer have any oxygen equipment in our home!!! Chase has not been on oxygen for over 3 months, but Chase's pulmonologist suggested we keep the oxygen in our home through RSV season. RSV season in Texas officially ends at the end of March so we had the equipment picked up this week. I couldn't be happier to get it out of our house! Hopefully, we'll never see it again! : )

Visit To The Arboretum

Yesterday, Eli, Chase and I went to the Arboretum. We had a great time! The weather was beautiful and the flowers are beautiful as well. What a fun, fun day!!

On Mondays and Tuesdays, there is a petting zoo at the arboretum. Eli enjoyed brushing the sheep and goats.

6 Months!

It is so hard to believe that Chase is already 6 months old! I am so proud of this sweet boy. He has been through so much in his short life, but has remained so strong!!!

Chase is now about 13 1/2 pounds and 24 inches tall (official numbers next week at his 6 mo. check up). He drinks his milk very well. He's not on solids yet, but we will probably be starting them soon. Because he is not nursing, I'm going to follow the doctor closer regarding his recommendations for cereal, food, etc. With Eli, we skipped cereal and didn't really do much other food until 12 months...not consistently anyway. Nursing was providing everything Eli needed....it's a different story with formula. : (

Chase is almost sitting up and developmentally on track according to his pediatrician. This is pretty amazing considering he has spent 6 weeks of his life lying in a hospital bed.

Chase is a great sleeper. He takes 3 - 4 naps a day and sleeps for about 12 hours at night. He wakes up once a night and goes straight back to sleep.

Chase smiles, laughs, and plays with his toys. He especially loves watching his big brother do anything at all!! It is so sweet to see the love between these two boys. There is nothing sweeter!!

Sweet Boys

Eli and Chase slept in the chair with Hunter for over an hour on Monday night while I was at 24 Hour Fitness. When I'm gone, I always worry about how things are going at home. I guess there is really no need to worry! : )

Home on Saturday

Saturday morning, Chase was discharged from the hospital. Eli and I were planning to pick up Hunter and Chase, but Eli was sick Friday night so we were not able to go to the hospital on Saturday. Thankfully, my Dad was able to go up to the hospital and bring Hunter and Chase home! : )

Chase is recovering well. He is eating very well and seems to feel fine. His sleeping schedule was a bit off, but as of last night I think we're back on schedule (just waking up once a night!). Chase doesn't have any activity restrictions, but he seems to have lost a little ground on sitting up....probably just from being on his back for a week....and he may be a little sore on his tummy too. We'll get there.

Thanks to everyone for all the prayers. We feel so blessed that Chase is doing so well.

Chase Update

Chase is still in the hospital, but continues to do very well. The doctors finally let him eat today. He has not had anything to eat since Monday! He started Pedialyte at noon today and did not have any issues. At midnight tonight, he gets to start on milk. If he tolerates the milk well, he should be able to come home tomorrow (Saturday)....Sunday at the latest.

On another note, Chase was taken off ALL his heart medications, including aspirin! His cardiologist said that he no longer needs them. WOW! I am shocked by this!!! Now he will only be on Previcid (for reflux) and Amoxicilian (b/c of his asplenia). I can't believe that I'm not going to have to prepare 6 medications in the morning and 5 medications at night! What a blessing!!!

ALSO, this may sound a little crazy, but Hunter and I were under the impression that Chase would require another heart surgery sometime around his second birthday. During the hospital stay, we spoke with Chase's surgeon and he stated that Chase's heart is considered fully repaired...no additional scheduled surgeries. His surgeon was able to repair all three defects during the surgery on September 12. I was shocked by this as well. I know it seems like I should have known this, but honestly, when the surgeon was talking to us after surgery, I don't remember much of what he said. I had just given birth 24 hours before and I was just focused on keeping Chase alive and taking him home. Since then, I've been focused on keeping him healthy and gaining weight. I've just recently had a chance to sit back and ask questions about his condition going forward.

I am so thankful to God for Chase, his doctors and all his caregivers. Chase is such a blessing and a miracle! It is absolutely miraculous that Chase has done so well given the extent of his heart disease and the statistics that we were given upon his diagnosis. We feel so blessed to have him with us!!! : )

Pics & Update

Chase was moved out of ICU and to the floor this afternoon. He continues to do very well. He was taken off the oxygen and may begin feedings as early as tomorrow morning. Once he is tolerating his feeds, we are out of the hospital!!! After being at the hospital for about 32 hours with no sleep, I came home to take a nap and Hunter took over at the hospital. It has been much better for Hunter...Chase is sleeping better and is feeling much better.

Eli and I headed back to the hospital this evening....Eli has been begging to see Chase. Eli enjoyed seeing Chase....and really enjoyed the vending machines and the fridge that is stocked with chocolate milk. : )

A few pics from the past couple of days.....

Mom & Chase after surgery
Chase after surgery - dramatically different than what he looked like after his heart surgery!

Awake, but still in ICU.

1 day post surgery - out of ICU and on the floor!

Peacefully sleeping

Mom & Eli playing in Chase's room (notice all the chocolate milk cartons....that's my Eli!)

Dad & Eli