Riley Visit

We yet again made the LONG trip to Indy and -surprise surprise- we yet again survived it! I always stress so much when preparing myself for these visits, not that I assume the worse, but I do know developmental peds and our neuro surgeon are more...book, studies, research, and facts...rather than hope, promise, and accomplishments. Not that that is a bad thing, we all need to know facts but I think it's worth it to also look at where we started to where we are today. But, as always, I left with a happy heart and nothing but good news!




So to start the week we went to Developmental Pediatrics first. We met a resident, first only to be followed by the doctor. You remember, that Doctor? The first one we met that I swore I wouldn't see again. However, before I could even get my panties in a wad, his attitude was different, he was happy and so impressed with Blake- as he should be!!! First off Blake's height and weight, Blake was 10th percentile in weight, and..wait for it... 25th percentile in height!!! (These are BIG numbers for us, since we have never even made the charts!) All in all he seemed pleased with where Blake is developmentally, the only changes he recommends is adding speech therapy possibly starting next year, and we debated the use of a muscle relaxant drug to help with the stiffness in his left arm. I use the word debate with great emphasis...for most of the appointment the doctor, the resident and my hubby and I all weighed the pros and cons and it just seemed like everyone was 50/50. In one way it would help Blake is stretching his muscles and helping the development of them, however on the opposing side (the side Zach and I are currently on) it may hinder his progression thus far and over relax him. Zach and I chose to postpone this decision until we feel the tightness in Blake's muscle is A.) causing him pain and/or B.) We stop seeing progression and the tightness starts keeping Blake from moving forward in his gross/ fine motor developmental. The doctor and his resident both seem to agree with our choice. We are however going back to Indy sooner rather than later for a follow up early next year. All in all it was a good appointment.












Moving on to day two! We went to Blake's neurosurgeon that he has seen ever since we arrived in the NICU. But first, we had to wake up extremely early to take Blake to get another MRI of his brain to see the progression of his brain development as well as checking in on his shunt and making sure everything is properly working. Luckily it was again a fast spin MRI so no sedation needed, maybe a tissue for mom and dad as we had to listen to him scream and cry for about 10 minutes straight. But better than him having to be put to sleep for the procedure. But that's not even the hardest part. It's the reviewing of the results that is hard. This is the part Zach and I dread the most of our Indy visits. However, yet again, we were pleasantly surprised!!! Blake's doctor entered our room with a smile, announcing rather enthusiastically, how pleased and happy she was with the results. "Let's go have a look shall we?" So we followed her to this small room outside the exam room, Blake in arms. And there she pulls up not only the days MRI, last years MRI, but also Blake's First ever MRI from when he was in the NICU . It got so quiet you could hear a pin drop. That was until Zach and I moved back and forth between the three. We were amazed. Blake's first MRI showed very VERY large areas of injured brain tissue caused from the hemmorage. These were the films we refused to look at after seeing one in the NICU. We purposely removed ourselves from seeing these, they were painful, they were reminders of what could be. What Blake may never do, how much damage was done. This film is heartbreaking. Then beside it is the film from last year, a big difference, those areas were smaller, surrounded by matured brain tissue, showing development that we never thought would be there and only confirmed what Blake was exhibiting in life- WHAT AN AMAZING CHILD HE IS!!! Look at where he came from! But no way could the MRI from this visit be better, but it was! The area on his left side of his brain was completely gray (what it should look like) with only a small pinpoint of damage still showing on the scan. She explained this is showing how amazing the child's brain is, able to rewire, and redirect brain waves. (Remember I'm a cardiac nurse...the brain completely confuses me! Go figure!) the right side (remember Blake's left arm is the major effected- left leg slightly effected) still showed the same infarcted area-or damaged- area but was half the size as even last time! Zach and I were overwhelmed. So happy! Yet again, so bewildered and amazed at our son! The only slightly bad news we got, was our doctor insisting we go to the eye doctor upstairs rather than going home..BOO.. We needed to go get Blake's left eye checked out from a stye. She was concerned it had become infected. (We decided it was best to go since the developmental pediatrician had been concerned as well)




So on to another unexpected doctors appointment. Luckily our neuro doc had pulled some strings and we only had about a 10 minute wait before being seen. After a few dozen questions, a quick eye exam the diagnosis was.......Drum roll please....... A STYE! Go figure! Exactly as Zach and I said. So we were instructed to do warm compresses (which we had been doing for days now). We were given a eye ointment just to prevent infection so the appointment wasn't a total waste. Better safe than sorry right?!








And finally...after three days, we had a quick visit to the new NICU, checked in with some of Blake's nurses . After the visit we then....Big sigh....finally got to drive home! Yay!!!


In the days later, Blake's eye is still healing but looks much better!




And bigger news...we packed up the bottles and have officially switched to sippy cups! After much therapy, and many different types of cups bought we have finally mastered the skill and have moved on from bottle brushes, cleaning five million different parts to clean, and sterilizing bottle after bottle....life is sweet now all I do is rinse and throw in the dishwasher! Time saver!!!And our baby is growing too fast!

World Prematurity Day

Today is World Prematurity Day. It is to help raise awareness for babies born premature and why they are born early. Most of you know our story and why this is so dear to our hearts. There are many organizations that help in this cause. Some that are near and dear to me are: The March of Dimes Riley Children's Foundation , Deaconess Women's Hospital , and Ronald McDonald House Charities (RMHC) .

All of these places and charities have helped my family in one way or another. With these amazing people and organizations, we would not have Blake with us today. These are amazing doctors, nurses, and people who give their lives helping babies and families through a very difficult journey that is the NICU. So please take time out of your day to research why this happens: CDC: On Premature Birth , and think about donating to these wonderful causes. They helped us get this little guy from an unimaginable 1lb 6oz, to the monster 20 pounder he is today!

18 month checkup

Blake just had his 18 month check up. Blake is weighing in at a solid skinny 20 lbs 4oz....and is measuring a BIG 32+ inches! Tall skinny boy! We actually aren't far off of the national average for his actual age! Blake is still developmentally behind, mainly in gross motor skills, but cognitively seems very smart. (We will give a more detailed report with our next blog post!) We will in the next two weeks be traveling to Indianapolis for our yearly visit to his neurologist for an MRI, and we will be meeting with, yet again, a new developmental pediatrician. Hopefully we will like this one, and they won't move far away to Seattle like our favorite doctor. These appointments are never Zach or my favorite type of appointments but we know how special our child is, and medically what will be will be...however we are going in with open minds, and expecting nothing but great news. Positive vibes and thoughts are always welcome though!

Happy Halloween!

Wishing everyone a Happy Halloween from the Hargis'!
Hope it's a HOOT!











What a difference a year makes! From Clark Kent to Mr. Owl!

Hair cut.

So Friday Zach and I broke down and decided to get Blake's shaggy do, that constantly aided in the question "isn't she a cutie", cut professionally. I thought I would handle this very we'll since we have cut his hair before....
This was the major cut I did Back in May!






So this time should be easy! But after the haircut I literally lost it. Tears running down my face, I quickly called Zach to tell him I hated the hair cut, and couldn't even talk about it I just thought she butchered it! So I rushed home to show Zach the horror I saw....and then- he looked at me super confused! Apparently it looked fine, actually looked really cute! Zach then looked at me with such compassion and amusement and asked me a simple question that simply took me back...
"Katie, are you sure you're not just upset that he got his hair cut and he looks older and is in fact getting older?"

And that was it! That was the fact I wasn't yet ready to face...my sweet little 1lb 6oz baby miracle, was no longer that....a baby! When did it happen? Those long days at the NICU when days couldn't go by fast enough, and now I can't get them to slow the heck down!

Remembering

Remember the day you found out you were pregnant? Remember that excited "Oh my God" moment? Do you remember the reaction of your significant other? Do you remember the speechless feeling?

Now, think back, do you remember the day you saw your baby on the ultrasound for the first time? Remember the sound of their heartbeat? Remember growing, and feeling the first kick, the first hiccup? Do you remember the day you went into labor? Surrounded by family? Do you remember the birth, and then moments later do you remember seeing your baby and holding them for the first time? Do you remember?
Remember that feeling...that "I am going to protect you, provide for you, and love you for the rest of your life....no matter what" feeling?

Although my first pregnancy was way off of the expected norm, I too remember these feelings. I remember like it was yesterday our first ultrasound....leaving breathless, speechless and pardon the language but scared shitless. I remember making phone calls to announce that we were not only expecting one little Hargis, but TWO. I remember the constant wave of sickness I felt, the utter disgusted feeling I had anytime I spotted or smelled chicken. I remember the first kicks from each baby, I remember sneaking in the back at work to Doppler the babies heartbeats. I remember the labor, and from that moment on I remember all the bad things, every ache, heartbreak, obstacle, and just utter horrible days we then faced day in and day out of our 141 day hospital stay.

But what I never talk about is the people I remember! I remember the NICU nurses and respiratory therapist whom not only took care of my babies, but who fell in love with our babies.

I REMEMBER.....
They were my hands when I couldn't hold Blake.




They were my eyes and ears when I had to be away from my sons bedside.




They were my sons caretakers, my sons life savers!



I REMEMBER.....
Not only did they take care of my son, but they took care of me. They held my hand when it needed held, they hugged me when I needed a hug and they sat and listened when I just wanted to scream!
They somehow would know when all I needed was for them to lift the lid of my sons incubator for 1 minute so I could lean in and give him his first kiss.




They would let my husband play blake his first lullaby on the mandolin at his bedside.




They would send us a text message of Blake (they will remain nameless) even though technically against policy, so that we did not worry when we had to travel back home for our son Conor's funeral.




They made us special signs, cards, and scrapbook pages on special days.




They included my son on their fun holiday celebrations...for example, half Christmas!




They would even give us a few minutes (as we acted ignorant to it) before telling us we had too many people at the bedside, even though they knew we knew better!



I REMEMBER.....
These women were a part of our lives for five months, and I don't know if I've ever taken the time to write on how much they meant to me and my family! The emotional strength they have to have, to come to work day in and day out in such a highly emotional situation for most families is incredible! So to the girls at Deaconess that cared for my sweet baby Conor before his passing, I thank you so much for working as hard as you did, and those that took care of Blake and allowed my whole family to sleep at his bedside for 24 hours when we swore he wouldn't make it through the night....I thank you!

And the same goes for my Riley girls! Oh lord, seriously you put up with my emotional high strung self for 4 1/2 months and laughed with me, cried with me, and were just amazing through it all! The surgeries, the bad days, the good days, really you were there for it all! I can't believe it's been over a year, and that in 6 months my son will be two! I know he would not be alive if it wasn't for the spectacular care we received from both hospitals! So, for what you do, from my husband and I we love you and can not ever begin to express how much you did for our little family! I don't have pictures of all of you, but you know who you are! Thank you so much for doing the jobs you did, and that some of you still do....the impact you had on our lives will never go away!




















You all are AMAZING!!

Hard Work

It's been a BIG week in our household! Blake is almost 18 months old, 14 months adjusted. Of course we have some developmental delays he can not walk, or pull up on things without assistance, but we know with time he will. Blake has not been able to crawl due to his left arm not having the strength it needs to pull his body weight into an upward crawling stance, but we knew with time he would get it and if you've met Blake you know that hasn't stopped him from getting around the house. He would roll from one side of the room to another in incredibly fast fashion! But as of this weekend, and many tears on my part....it's clicked! As Zach and I laid on the floor for playtime before bed Sunday night, their he went army crawling around everywhere! Sometimes using his knees but for the most part using his arms to crawl around everywhere! It will only be weeks before our house has a baby going everywhere! Time to baby proof! We aren't perfect parents we struggle sometimes seeing the frustration Blake has when he would try and not be able to do things, but after many hours, days and months spent it is so.....emotional, amazing and gratifying to see the hard work our son has put in paying off! Such a proud mommy and daddy we are!

I couldn't capture him using his knees as well as he has....but this still gives ya a video of my miracle baby making big strides to being mobile!!!