First Week Home.

August 31, 2012

After a week home, today we had to do something a parent should never have to do. Its time, time for our little Conor to be honored with a headstone. A grave marker to commemorate our precious little angel....but what type? I was not prepared for the decisions we were expected to make- what color, what size, what cut, what do you want it to say.....what do you want?

"What do I want?"

I want my baby, I want to not have to make this decision, I want.....

I want things I simply can not have. 

We have been doing well since home, we were warned that once we got home it might strike us a little harder that Conor is truly gone...but to be honest I have felt the pain and grief of knowing Conor was never coming home with us, since we left Deaconess back months ago. I have felt the slow and heartbreaking truth that my baby will never again be held in our arms, we will never be able to kiss him, rock him to sleep, I have felt it...all along since day one. I think the hardest is not knowing...not knowing the famous question....WHY? But we try to not focus on why, but instead focus on his life, and remember he is always in our hearts, always alive in spirit. Every time our wind chimes sing, our weeping willow sways, every time the sun sets, and every time a tear falls down my cheek, I feel him. I feel the love for my little angel. He is alive in Zach, he is alive in Blake, he is alive in my heart. Forever and always. Death is something no one wishes to bring up, no one wants to remind someone of the loss they have endured. But the thing is, bringing up Conor doesn't remind me that he passed away, I never forget that he passed away...but do you know what bringing up Conor does remind me? It reminds me that other people remember him too, that it wasn't just Blake. That other people LOVED him too. 

So today Zach and I face a hard decision, face something that no parent should ever have to do...today we choose the monument that sits where our son lays. 

CONOR JAMES HARGIS. Beloved son, grandson and twin brother. 

Blake has had a multitude of appointments in the short time we have been home. This week we had two very important appointments. One with the Ophthalmologist to see the progress of his eyes post laser surgery, and an Audiologist. Blake had to see the Audiologist due to him failing his hearing screen in his left ear twice at Riley. Failing a hearing screen does not mean he is deaf, however, the probability that he could be deaf or having hearing loss was always high. The plus to this hearing screen was that he passed his right ear twice, so we knew he could hear atleast out of one ear. So our week started out...first up- EYES. Blake met with Dr. Englert in Evansville for a follow up exam- and good news Blake'e eye sight looks perfectly normal and his test for near sightedness was negative! We will have a follow up exam in 3 months, but for now all looks well and we will take it!! Second up- EARS. This test was a little more stressful than the eyes. We were instructed to keep Blake awake before the test so that he would sleep soundly throughout the hearing test which takes approximately 2 hours. So Blake and I woke up at 5:30 that morning, and at first we played, and sang, and danced. Blake did really well, and it wasn't until we were in his car seat that all hell broke lose. It was then 8:30 and my lil' man was T-I-R-E-D!! Poor baby was so fussy, and was not fond of mommy and daddy poking and constantly waking him up on the drive to the doctors. But all the hard work paid off. After a bottle, Blake passed out, and snoozed soundly the whole test! Expecting a in depth conversation about the options we had for Blake regarding his left ear hearing loss, we were instead shocked with the sentence "I couldn't believe it myself- After all Blake has been through you would expect some mild if not severe hearing loss....BUT....Blake has 100% hearing in both his RIGHT and LEFT ear!! I would give him an A- and the minus only because he has some mild fluid congestion behind his left ear!" It was wonderful news! Zach and I couldn't wait to call our parents! I immediately started crying to the girl explaining this is the FIRST victory we had had for a long time!! One part of Blake's body that works, and works well!! A truly answered prayer!! Our son- the fighter, the miracle baby! 

As hard as it is sometimes to only get to hold one of our twins...We know we were blessed with twins, blessed with each of them for a reason. We cherish every day with Blake, and count our blessings for having time with Conor. Our boys were born together to grow apart....One in our hands, and One in our hearts!

Trying out our swing seat.

 I dont know why but here are a few sad face pics...
I just love them!

 Bright eyed

 Don't believe it...

 I finally caught his pretend sad face on camera!!

 Blake hamming it up... ERMAHGERD!!

Blake "MY lil' Monkey" and his "My little Monkey" 

" Its too loud in here momma!"

 Aussie and Blake

 Sound asleep on the front porch with mommy

 Always the paranoid look

 Daddy playing the Mandolin for Blake

 Aussie always making sure everythings okay.

 Sleeping on his Boppy

 Being a ham!

Visitors

Now that we have been in our home for a week, I wanted to write a blog with information on it for all our visitors. We have been to Blake's pediatrician now, and she has left us with a few guidelines in preventing Blake from getting sick, and possibly ending up back in the hospital. Please if you plan on visiting us, read this blog first! 

Due to Blake's prematurity a common cold could send Blake back into the hospital on a ventilator, or even be fatal. Blake is at high risk for serious complications like pneumonia, bronchitis, and other sometimes fatal virus's. So because of this there are some strict rules we must follow for the first year or so of his life. Zach and don't mean to be crazy, paranoid parents but after 4 long months in the NICU we did not fight along with him just to end up back at the beginning. So we ask that you understand that even though Blake now looks like a healthy newborn, he still has immature lungs, and does not have the antibodies to fight off illness that normal babies and kids do. So because of this we will be on house arrest through the first few months home, and then all winter due to RSV season. RSV season starts October and ends in April. If you do not know what RSV is there is a great site that you should read up on. www.RSVprotection.com. So from now, until April we will be on LOCKDOWN. Zach and I aren't looking forward to being couped up in our house unable to go anywhere including church, family gatherings, shopping, etc. but we are prepared to do what is necessary for our son. However, we can have visitors, and you are more than welcome to come and see us and Blake to keep us from becoming insane but there are a few simple rules and guidelines we ask that you follow. 

1. ALWAYS come in and wash your hands before touching anything (especially Blake) We have several hand sanitizers around the house as well.

 

2. We ask that you do NOT bring over children. As much as I LOVE babies and all our friends kids, we unfortunately have been advised to keep children away from Blake. Especially school aged children!

3. If you have been/have been around someone who is sick within the past 2 weeks please do not come over. Although you may not have been the one that is sick- an adult can carry antibodies of virus's and bacteria that lies dormant in them and then with one simple touch can pass it to Blake. 

4. If you smoke- please don't smoke right before coming over to see Blake and if you have to smoke- either bring a clean shirt to change into, or only visit and do not hold Blake. 

5. Please don't get your feelings hurt if we ask you not to visit. If Zach or I feel like someone visiting has symptoms of a cold or other illness we will ask you to leave. Not because we don't want to see you but we just really don't want Blake to get sick. 

I know we are being WAY protective, but it is DOCTORS orders, and like I said- we spent too much time in the NICU to take a few steps backwards with an illness, and our son's safety and health is our ONE and ONLY concern! 

Sleep Deprived, and Happy!!

To my antsy pantsy friends, family and followers...AN UPDATE!! 

It has been an adventurous, interesting and very VERY sleep deprived 3 days..

and Zach and I have LOVED every minute of it! 

Blake is doing well, acting like a newborn which he kinda is- if you use adjusted age anyway! Blake is now 4 and 1/2 months old: 3 1/2 weeks adjusted. He eats, sleeps, poops everywhere I might add!, and pees. Ever since we left Riley's on Tuesday Blake has turned into a piggie- instead of eating 2 ounces every 3-4 hours he is eating about 3-4 ounces every 3 hours. He sleeps through the night- haha just kidding! He sleeps all day and tries to party all night. Actually minus Thursday night Blake has been sleeping well, waking up at 2 and 6 and then wakes up for the day usually at 9. Zach and I are pretty good at tag teamin it- and I actually feel pretty well rested when compared to the loud room at the Ronald McDonald house! 

Blake had his first (of many) doctors appointments yesterday with his pediatrician Dr. Weyer. He still doesn't meet any weight or length that meets percentiles but he is gaining and growing that's all that matters! Blake is up to 6lbs 8.5 ounces, and is 19 inches long. Dr. Weyer seemed impressed with how well Blake is doing after all he has been through. He has really great neck control, and is going right along with milestones for his adjusted age. We go back in a few weeks for a weight check, which if blake continues to eat the way he is he will be a chunker before we know it!

Now for what you all have really been wanting...PiCturEs!!!

Just hanging out before his bath time!

He now loves bathtime!!

Aussie so protective...trying to see why Blake is crying.

We went and visited Conor's gravesite (still trying to find the perfect monument headstone for him) yesterday. It was a mix of emotions. It was hard to see Blake beside Conor's gravesite, all I wanted was to have them both side by side- but not in this way. However. as sad as it as,  it was also strangely peaceful, and we could feel our little ones presence. 

We thanked Conor for watching out for Blake- my boys. 

My fighter and My angel...beside each other and always in my heart!

Home sweet Home.

A glimpse into our "coming home" and first night outside of the NICU.

Blake was waving goodbye...so ready!

One last goodbye to the NICU.

Daddy waving goodbye!

Blake's first walk around the hospital.

Happy times! Happy tears!

Zach, Me and Blake with our nurses.

He is suave and he knows it!

We are coming home!!

Blake in Henderson with great grandma Evelyn.

So happy to be home!

Daddy and his boys!

Me and my doggie!! So happy to see him!!

Daddy snuggling with our lil' man

Blake slept a little- and woke up every three hours hungry as can be!! He is eating way more now that he is home...and Zach and I are happy to oblige and be sleep deprived as can be....because we are home and it is heavenly!!

Just a swinging away!

Next up our first meeting with our pediatrician on Friday...