Nutrition

I tracked Daylen's calorie intake today just to see if I could get him to eat the recommended amount of calories that a kid his age should eat! I got him to eat 1,350 calories worth of food and it wasn't exactly hard but it wasn't easy either!

I made sure he still got his recommended amount of fruit and veggies but not his usual intake! The kid loves to eat low cal fruits n veggies and that's what hurts his ability to gain fat!

If anyone has any tips or suggestions on what to feed a picky toddler whose favorite word is "no" that isnt packed with sugar then please feel free to comment!!! :)

Cardiology

Daylen went in last week for a check up and to see if he was ready for the fontan! Everything looked great except the cardiologist was not happy about his weight! He barely gained anything in the 4 months that we last saw his doctor :/

He plans on giving us a date for the fontan in July/August so he can gain a little more! My duty for the next three months is to get him to at least 30 lbs!

Since he was last weighed on Friday he's gained 4 oz!! I know it's not a lot but its a start! Ill be posting weekly updates of the weight gain!

Color

At 2.5 years old, Daylens color is more blue these days. His lips and fingertips turn purple pretty quickly. Apparently this is normal and just means Daylen is ready for the fontan! We have a cardiologist app on Thursday. After that, we will know a time and date for the last n final surgery!

My emotions over this are all over the place! I'm upset for the surgery and upset that he has to go thru this...but I'm looking forward to him being done with this.

I will update everyone when we find out more information!

Occupational and Physical Therapy

We get to say good byeeee to Dr. Escobar today

(Daylen's pediatric medical geneticist)

Daylen scored high on all his cognative and thinking tests at his visit.

I am one proud mother right now!

If anyone remembers, exactly 1 year ago, Daylen had scored so low that Dr. Escobar left it up to me to decide if I want to place him in therapy or not. He was borderline-behind from what I called it and it upset me so much.

Being the mother that I am, I was not about to let some stranger into my house to try and teach my child things that I can very well do myself. With that being said, my son scored a 107 and the words "advanced" came right out of the doctors mouth!

Cardiology - 12/19/12

Daylen went in yesterday for a check up with cardiology!

I swear the older he gets, the worse these check ups are!

We did manage to get an EKG and the pulse ox on him!

His oxygen was 80% and the cardio mentioned he will start looking blue more often

leading up to his surgery since the SAT's are dropping.

They dip into the 70's when he is angry or upset and we already notice

blue fingertips when that happens!

Next check up is in April and from there we will schedule his Fontan surgery!

3 cheers for the last surgery and fingers crossed his chest will never need opened again!!!!

Fontan is right around the corner! I was not okay with hearing those words come out of

the cardio's mouth but I know he must get thru this!

Daylen turns 2!

Daylen officially hit 2 years old on 11/11/12 :)

He recieved lots of love and lots of gifts!!

His 2 year check up with the ped went great! She was very pleased with our heart baby!

He weighed 26 lbs which still puts him in the skinny range but thats ok!

10-11-12

Havent been on in a while but wanted to announce (sort of late) that on 10-11-12. Daylen became a big brother to Greyson Quinn F. weighing 8lbs and 2 oz and 21.5 inches long!!!! Looks identical to big brother!

Daylen, a big brother soon

In less than a week, Daylen will be a big brother to a healthy little boy as far as we know!

Fingers crossed that any testing after Greyson is born, comes out ok!!!

Right now, I am scheduled to come in the night of the 10th so hopefully the little guy

will come on 10/11/12 :)

How did I get so lucky to have such cool birthday's for both of my boys

Daylen being on 11/11 and Greyson possibly 10/11/12

With that mentioned, another big event coming up is Daylen's 2nd birthday!

I was so emotional about his first birthday and so proud that he has made it this far!

Will every birthday with my little HLHS warrior be so emotional?!

I guess it makes it all that much more special :)

No dwelling

I wanted to take the time to write about how we, Daylens parents, try to really go above and beyond at making Daylens life as normal as possible. From the get go, we were told he has little chance at doing every day normal kid stuff from running around to playing sports. I feared for my son that he would grow up being left out just because he may get out of breath too easy or can't handle the physical activity that "normal" life brings. I tried connecting with so many heart moms and adult CHDers and instantly knew that this was a bad idea for me. So much finger pointing, atoo much negativity about pictures of surgery and recovery, too many opinions, not enough striving. I wanted to see how everyones kids were doing but in reality I just saw a bunch of parents constantly bickering or parents that were consumed in the sick part of their child's life. I saw too many deaths, struggles, and sorrow in the CHD world and saw too many moms and dads dwelling on the the need and support of the community rather than greiving in their own safe way. Even though I have no idea how it feels to lose a child, I do know how it feels to be apart of this hlhs world. It sucks.

 It brought great sadness to my life and that's exactly what I did not need. I decided to delete A LOT of heart moms and drop out of A LOT of groups and chose only those to stay in touch with that I felt I can continue to connect with on a positive level even if their children had passed away! Some people greive better than others and I need to see the better part of that. Deleting people was the best decision I ever made. I'm well aware of the statistics for HLHS and the success rates of our hospital. I'm well aware what could have happened, what can happen, and what could still happen. With Daylen we are in the living stage of life, not the grieving stage of life. I did plenty of crying during my pregnancy but he's here, and he's living. I need positive thinking in my world all while dealing with the reality of my sons diagnosis.

Daylen is now almost 2 years old and nothing holds him back from doing anything his little heart desires. He loves walking for blocks and blocks, he walks at his own pace and does very well keeping up w us grown ups when we go walkin. He loves throwing balls but what boy doesn't?! He has an arm on him and I can tell he's going to play baseball just like his daddy and uncle both did! He loves music, he sings and dances and plays the piano. He's no Beethoven but he enjoys doing it. He hardly ever sweats from what I see and never holds a fever. He's never been sick in his 21 months of life and we take great pride in that, especially because I've become so germ-crazy!

Daylen is living a normal healthy life in my eyes, half hearted or not, we don't see him as the sick child he is. It doesn't consume our lives and it's helped us tremendously. Daylen is too busy doing sideways flips off the couch and constantly tries to sneak mountain dew for us to even see the "sick" child in him. I hope he continues to do well and we are looking forward to being post fontan. I hope to see him do things in life that will make him happy. I hope we can continue to be positive and continue our normal way of life and I hope many others in the HLHS world do the same.

Remembering....

In December of 2011, a dear friend of mine lost her little girl at age 5 months due to complications risen from a mitochondrial disease discovered at 2.5 months old.

She was a doll baby and is loved by so many people here on earth.

Her 1st birthday was July 9th in which she celebrated up in heaven

and I can only imagine how beautiful it was.

Daylen and I celebrated her birthday by making her a cute little flower pot

and taking it to her along with some pink balloons :)

For more information on mitochondrial disease please visit:

http://www.umdf.org/site/c.arJJK0MJJhL0H/b.8053533/k.BDAB/Home.htm

http://www.energyforlifewalk.org/site/c.buITJdNTKmL8G/b.6333795/k.BF07/Home.htm

Update on baby brother

We decided to change the name from Leland Ty to Greyson Quinn :)

It just didn't stick well with us as time went by

and

I couldn't picture a Leland as my son so that is why we changed the name!

On another note, we were given another ultrasound at 28 weeks due to my awesome

gestational diabete for growth monitoring and he is not large at all!

...atleast not yet :)

He was actually measuring in the 47th percentile for weight

which is below average to be technical

but perfect either way!

Daylen was also average at 7lbs and 8 oz regardless of my diabetes so I'm hoping to have another not so small and not so big baby!

Thanks for reading!

Cath Results

July 17, 2012

8 a.m.

Daylen went in for a scheduled heart cath to see how his hemi-fontan procedure looks that was done the year before and to see if anything needed to be done prior to his last surgery. Daylen's ped cardiologist met with us a few hours after the cath begin and had mentioned everything looked beautiful and had said there was only 1 area of concern.

During Daylen's hemi-fontan procedure, he had both of his lungs patched  due to narrowing  at the lung openings that was discovered at birth. Since his hemi-fontan (4.5 months old) his left lung is showing narrowing again. His cardiologist mentioned they will either fix this with a stent or run condiut from his sup. vena cava and into his lung. If they do the stent, it can be done during another Cath prior to his surgery. We won't know answers until his next cardiology app in 4-5 months. 

9 days til next heart catheterization

Daylen is scheduled for a heart cath on July 17 at 8 am. 

Please pray for him that everything will go well with no hiccups!

All they are doing is getting updated pics and video of his heart function to help determine when his Fontan surgery will be.

He has done exceptionally well with everything he has faced so far! 

Keep the positive thoughts coming :)

Daylen has a little BROTHER!

20 weeks here

Expected to make his appearance in mid-October!! We are happy to announce he is 100% healthy as far as his heart goes and other developments!! It will be so weird and new to us to bring home a healthy baby without NICU visits or surgeries!!

We had a level 2 ultrasound scheduled with the same doctors that diagnosed Daylen with his heart condition! Everything so far looks good and we couldn't be happier! I will be making sure that new baby gets scheduled for an echo after birth so we can be sure there are not holes in the heart that were not visible on ultrasound!



Team Daylen - March of Dimes

March of dimes walk for Indianapolis is May 12, 2012 @ 10 am! Located at White River State park! It's a 3 mile walk and goes further for those wanting to the 5k!

So far, 51 shirt orders have been placed which is almost as awesome as when we sold the HLHS bands with Daylen's name on them!! We have, however, raised a lot more money this year without having to sell anything!! :) It's not too late to donate still! Just follow the link I have below to donate to my team so that we can reach our fundraising goal! All proceeds go straight to March of Dimes and from there they take care of where all the money raised will go! :)

www.marchforbabie.org/JenRo87

Daylen (1.5 yrs)

Heart Walks planned for the year!

Here are links to 2 different walks that Daylen and I will be attending! One is the march of dimes walk for premature babies and babies born with defects, and the other is the Indianapolis heart walk sponsored by the american heart association! Please take the time to check out both sites, and if possible, please donate and register to walk with us!


    http://www.marchforbabies.org/JenRo87    

http://heartwalk.kintera.org/indy/teamdaylen

Cardiology appointment @ 15 months

Daylen is scheduled for a heart cathiterization this June just to get a good look at how his heart is doing with the 2nd stage surgery. It will also give the doctors a better determination of when the last 3rd stage surgery will take place. His cardiologist is shooting for next spring of 2013 when Daylen is a little over 2 years old. His SAT levels are still looking good except for when he cries, they drop to the 70's but thats pretty normal.

Next appointment

Daylen's next cardiology appointment has been scheduled for March 7th! By that time, Daylen hasn't seen his cardiologist in 7 months!!! At the time it felt like March was forever away, far away enough for me to not stress or freak out but now the time is getting close and i'm starting to freak out. I know it's just a silly little doctor appointment but this appointment either means surgery or no surgery. At the time Daylen had his 2nd surgery they told us that Dr. Abraham usually does the last and final surgery a year after the hemi-fontan is done.....well...... March marks a year! As before, i'm sure we will have to schedule a catheterization as usual to get good pics and videos of his heart. I know the time is getting closer because he's starting to look more blue these days. Not blue enough to really notice or to worry about but I see enough blue in him to have noticed over time. He's looking like he used to before his hemi.

I really hope that this next surgery doesn't set him too far back, he's still not walking and lately gaining weight has been sort of an issue! Also to mention, his neurologist wasn't too happy with his motor skills tests. If his surgery isn't til later, I'd be so happy! I could get school out of the way, moving into a new home where he can recover, and possibly have a better paying job now that his medicaid no longer covers him.

Just when I thought 2012 was going to be a good year, I thought wrong.

Sweet baby Adalyn

Sweet little Adalyn Jean at 5 months old earned her angel wings on December 9, 2011. She was diagnosed with cardiomyopathy 2 1/2 months ago when getting admitted into the hospital for being lethargic and limp. After numerous tests and long weeks of waiting, doctors discovered she had a metabolic issue that was causing all of this. Although her life was a short 5 months here on earth, those 5 months were long enough for this little girl to leave such a huge impact here on earth. Family, friends, and even strangers put forth their faith and prayed for this tiny little beam of light. She fought hard, and her parents stood by her the entire time. I can say I feel very blessed to have been able to have this family in my life, her mother being one of my close friends. With my own son being diagnosed with a fatal/severe heart defect, I thought I was strong for what god laid before me, but I don't think I could ever be as strong as my dear friend Courtney. She's an inspiration and I hope prayers help give her strength to survive the long road that she and her husband have ahead of them in healing. God bless the Spence family and may Adalyn rest in god's hands now.

Adalyn Jean Spence

(July 9, 2011 - December 9, 2011)

"When tomorrow starts without me, and I’m not there to see,
If the sun should rise and find your eyes all filled with tears for me;
I wish so much you wouldn’t cry the way you did today,
while thinking of the many things we didn’t get to say.
I know how much you care for me, and how much I care for you,
and each time that you think of me I know you’ll miss me too;

So when tomorrow starts without me, don’t think we’re far apart,
for every time you think of me, please know I’m in your heart."

Sleeping Training update - Day 5

Day 2 of sleep training....
Daylen went to bed at 8pm, with his new bed time routine, and slept straight through the night until 7 am! That is 11 hours of sleep on just the second day! Keep in mind, he also had 2 day time naps! :) Where was the book like 9 months ago?!!!!

Day 3 of sleep training....
Daylen spent the night with his grandma and he had trouble going down. Not sure if it was because he was at her house and he loves to play! He didn't go down til 930 officially after waking up twice after she put him to bed! I agreed to 1 bottle since he really didn't take his bottle during his routine. She then reported to me that he had woken up at 2 am so she sat with him and let him work out crying and she was there to calm him. He was then up at 5 am and read to play. All in all, not as good as I hoped, but I'm guessing its because he was at his Grandma's house :)

Day 4 of sleep training....
Daylen went down around 9pm..later than what the book says to put him down at, but this time he cried a little more than usual. He also had a nap around 5pm prior to this which threw off his bed time for him. Daylen decided that banging his head against the crib, and crying was the best thing to do in front of me so I kissed him good night and left the room. This seemed to do the trick although the book strongly recommends not leaving in the middle of them crying because they feel alone...I couldn't just watch him bang his head trying to get a reaction from me! He slept the through the night again and woke up at 7 am :)

Day 5 of sleep training....
Daylen had 2 naps, one in the morning and one in the evening and finally went to bed at 830pm. I rocked him while he drank his bottle and after we played with his feel a little and we laughed :) I then told him it was "night-night" time and he agreed to it! He didn't cry, bang his head, or throw things out of his crib. I gave him his teddy and covered him up and he just smiled! After I left the room I heard him giggling and calling for "da-da" but this only lasted for a few minutes and now he is sound asleep!


I really recommend this book to anyone and everyone! This book makes it seem so easy and I can't believe i've been missing out on sleep that I coulda had!