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!

Sleep Training Day 1

After reading a sleep training book for babies, I decided to give it a try! Daylen still wakes up every 3 hours on normal nights and every hour when teething. I can not keep doing this because i'm at my limit for lack of sleep! Daylen is a year old and this should not be happening!!

After reading the book, I realized that it wasn't his fault that he continues to get up at night but the full blame is on us, the parents! Daylen does not know how to fall asleep on his own and giving him a bottle in the crib has been his sleep aid! We have been aiding him to sleep so when he wakes up during the middle of night, he needs his sleep aid to go back to sleep! That will happen no more!

Monday, November 21st was the first day I started the sleeping training. I started with nap time and I put him to bed without a bottle in crib! I fed him and rocked him a little before putting him down. Of course he cried but he was out within minutes for the first nap, and down within 30 minutes for the second nap. I've always been against the cry-it-out method, but the book helped assure me that this was best for him.

We wrote out a new bed time plan for him, which includes a bed time routine which apparently is really important and something we had never done before. We always just let Daylen call the bed time shot and then we change him and put him down with a bottle.

Here is his new bed time routine...
Bed time must be between 7-8 and the routine should only take 30 mins.
-Bath time
-brush teeth
-lotion/skin medications
-bottle/cup
-aspirin
-rock a little
-lay down

Last night that is exactly what was done and he went to sleep at 8pm and didn't wake up until 3:30am! I was suprised! After he woke though, he cried for a good 40 minutes and I tried the soothing and calming tehniques in the book but he was too upset. I didn't leave his side until he was calmed down for the most part but every 10 minutes for the next hour you could hear him wheep a little. The book says if baby wakes around 6am, its okay to bring him to the kitchen to eat food and milk. This lets him know when morning has arrived so that it will help his internal sleep timer stretch further. We made it to 5 am and his father finally caved in and let him have breakfast! He went back to sleep shortly after and didn't get up til 930!

If we can continue to do this well then I will be a very happy mommy! Lets hope day 2 goes just as planned!

12 month check up

Daylen had his 12 month check up last week and things went very well!

At 12 months old, he is 21 lbs 5 oz and 30 inches long! 

This puts him in the 50th percentile for everything now :)

How exciting! 

Daylen was switched to whole milk instead of formula which sounds NICE on my budget these days!

His pediatrician wants us to continue feeding him not only finger foods but also baby foods still.

We initially stopped the spoon feeding with baby foods because Daylen was not allowing

us to feed him with a spoon. He likes to be independent but his ped told us a trick and it worked!

She mentioned during feedings to give him his own spoon while i feed him with another spoon! 

The only thing that Daylen's ped was concerned about was his night wakings for a bottle. Yes, Daylen still takes bottles. I know by age 1 they should be using sippy cups, which he has no problem with, but always having him on formula was just easier for measuring in bottles. She emailed me a sleep book to read to hopefully help get him sleep thru the night. 

Daylen's 1st Birthday!! 11-11-11

Daylen turned 1 years old on 11-11-11 

...a true sign from god that this boy is indeed special 

and a rare kind!

We held his birthday party on Saturday, November 12, 2011.

The theme was elmo and we invited family and close friends!

I'd say about 35 people attended and I THANK each one of them for showing up!

Without them, the party would have not been a party! 

:) I'm so glad that my little heart baby has made it to his one year mark! This day was a very emotional day for. I cried because I was happy and I cried because I was sad and overwhelmed. Happy that we have made it this far and sad because that day, brought back memories of all the fear and worry that I had. Overwhelmed because I know we are getting that much closer to his last surgery.

Below are some pictures from his party :) 

I haven't had the chance to upload the really good ones yet!

The Birthday cake :)

Daylen and I with my long time best friend Ashley and her daughter Brooklynn

Playing with one of his new toys :) 

The season for sickness!

It's cold, flu, and RSV season!!!!!

Starting this month, Daylen will get 1 of his 5 doses of synagis! 

Time to whip out the hand sanitizers and enforce washing hands!!

:)

Dermatologist Update!

Since Daylen was 6 weeks old he had been having skin troubles and we finally got a name to his condition!

It's called eczema craquele which means the skin "cracks"! According to the dermatologist the skin stings in the cracks when anything is applied but Daylen has never showed any discomfort or itching!

We were given 2 different medications, one is for his arms and legs which is a compound mixed with vasoline, and the other is for his face which is less effective to the tissue! Some creams break the skin and cause the crack look and she things thats why his cheeks are always cracked looking and rosy!

We were also given new bathing instructions to help from drying him out!

Hopefully we won't need to go back but she says that Daylen's little palms are already showing sign's of his father's skin/iron condition in his hands!

Update!

It's been a while since I posted a new update so I figured I would give an update on the little guy! So far we are 7 months post hemi-fontant/glenn/bi-directional-whatever-you-wanna-call-it procedure! Daylen has done so well since March and all of his check ups are going great! We are not due for another cardiology appointment for another 5ish months (yes i'm counting down the months because I know the plan for the final procedure will be around that time!) Nothing major has happened that needs reported or else I'm sure I would have already put that on here! Daylen has caught his first virus since birth and broke out in his first fever ever!! Everyone tried telling me it was just him teething but I know my baby best and I knew something was not right! His fever climbed to 102 and stayed for a few days but remained mostly low grade! No diarrhea or drooling (which is the only 2 symptoms he has when teething)! After all was said and done with tylenol and waiting it out, Daylen broke out in a fever-related rash! I was told it was common with viral infections and that most babies will get it! I'm glad that it was just a minor thing and not anything major!

Daylen is scheduled to see a dermatologist in early November for his skin condition that I can not keep up with! It comes once a month and is only on skin that is exposed to the environment (i.e. face, hands, lower limbs, feet) and it comes in 2 diff forms, tiny red bumps, and a form of scabbing but its not actual scabs (no blood or caused from cuts) almost like his skin has bubbled and hardened. very strange! Nothing works and he doesn't seem bothered by it but I'm tired of seeing my baby like this!

5 month Post Glenn Cardiology Appointment

Daylen had another post glenn check up with his cardiologist and it went fantastic! He is almost 10 months old now and growing so much! Weighing in at 20 lbs and a little more than 2 feet tall (shorty), he didn't need an EKG done, but did have more pictures of his heart taken thru an echocardiogram. His o-sat's were 88 (but the probe had a weak signal so I believe they were higher) Dr. Parihk took Daylen off of the lasix completely and increased his aspirin (for blood thinning) to half a tablet every day now since he weighs so much :)

After all was said and done, Dr. Parihk said we didn't need to come back for another 7-8 months! How wonderful! The only downside to that is the fact that I know once those 7-8 months are up, they will be deciding on a plan for his 3rd surgery :/ (sigh) However, I can NOT wait until we are post-fontan!!

He was trying to crawl out of the office so we occupied him with food :)

9 month check up

Can't believe my baby boy is 9 months old! 

it's def a mix of emotions!

My little baby D weighs 18lbs and 14 oz 

and is 28.5 in long

and his o-sat's went up to 95 :)

such great news!

his color looks great

and the only thing we have had to deal with

is teething and early "tantrums" that start out 

with Daylen throwing his hands and then "crossing" them

all while making pouty faces.

its too cute :)

Little Mr. has an attitude!

But anyway his 3rd tooth is working it's way out so he is extra needy

for some cuddles and momma time! 

Daylen is eating food 3 times a day 

and mostly likes toast and cheerios for bfast, apples for lunch, and veggies for dinner.

So far he has tried chicken and loves it!

Project Acceptance

Here are a few pictures that Daylen and I got to take as part of a project known as 'Project Acceptance'. The photographs were taken by Charley Green. Below is a website where you can read about the project and get to know the people on there!

 http://projectacceptance.com/

http://www.facebook.com/ProjectAcceptance?sk=info

HLHS video of Daylen

Genetics testing results!

After waiting for almost 3 weeks on Daylen's genetics test...

we finally got the answers in the mail today...

We had a genetics test done on Daylen to see if there were

any chromosomal abnormalities

to see where Dave and my future stood

as far as having future children without birth defects.

Well.......the test came back.......

YAY!!!

So what does this mean?! 

It means that the next child (just like the rest of the population) only has a 1% of having a CHD

but because we already have a child part of that 1%

it puts our chances at a tiny 2%

I'll take that 2% chance over any other number that it could have been
 if Daylens's CHD was genetically formed. 

Clapping and waving :)

Daylen started clapping and waving around 7 1/2 months old. 

My mom taught him the clapping thing 

that goes along with a lil german kiddy rhyme

its too cute :)

he claps during diaper change now

and smiles 

cuz he knows he's smart 

Neurology and genetics appointment

Last week Daylen had an appointment with the neurology center to see how his growth and development was. They did a few tests on him and turns out he scored very well for a heart baby! His motos skills reached a high of 115% meaning he's doing things that babies a month ahead of him are doing! Physically he is measuring to be his age. They were very pleased with him and asked to see him again in 6 months! He weighed a good 17 lbs and 4 oz and measured 26 in long.

While at the neurology center, Dr. Escobar recommended we do a genetics test on him to see if his birth defect happened genetically or if it just happened. They can determine if our future children will have higher chances of having birth defects too. I am anxious to hear the results because I am not sure if I can handle another HLHS baby. As much as we love Daylen, its very hard to deal with and who is to say if the next one doesnt have a worst case of it. We will keep you all updated as soon as we hear anything in the next week.