Thursday, September 25, 2008

More pics post op


when he was still feeling bad- he looked so
pitiful and was very quiet :(


he LOVES riding in the wagon around the
unit- we just have to tote a lot of
equipment


isn't his smile just sooooooo cute- who'd
have thought he was having all these issues?
oh wait- the morphine DOES help lol

Thursday, September 18, 2008

4th day post-op


nurse helping keep artery from bleeding

and he handled it very well, but morphine MAY
have had something to do with it lol


first time to hold since his surgery


little man looking more like himself :)


He did well today. They are still trying to work out his high blood pressure issues. The docs said 'its as if his heart has been running a marathon everyday since he was born- and now it can relax and doesn't quite know what to do yet'. so tomorrow we should be moving in with him and leaving within a week we hope. Murvin starts back to work Monday.
I would ask that you keep a few families in your prayers that we have gotten to know in the ICU- one family whose son today was having a heart transplant at 13 months old; another family who just lost their 1 month old baby; and a premie twin who also has heart complications. Just today they admitted 3 babies into the ICU for heart surguries or recovery and I just couldn't help but remember how small and fragile Parrish was during his first surgery.

What can be difficult about having a child with special needs is that you tend to think your child's condition or situation is the worst or your life complications are more complicated than other people that you meet. But what binds us all together in this strange world of 'heart babies' is that we all feel blessed and we all have had our moments of doubt, despair, insecurities and setbacks But we have not lost HOPE. I admit, many times I have not had much faith or hope when it came to what could happen to my son. When you hear things like 'statistics for survival' and 'about 65% make to age 5' or 'your child could fly thru theses surgeries and then have a heart attack at 2 or 12 years old- you think all is lost. And if I let myself stay in that mindset- what kind of life would that be for Parrish? As scared and petrified and afraid I may feel- I remind myself that for right now, at that moment- he is THERE. I had always HOPED to have a beautiful child and I did, and ever since we found out what was wrong with his heart every single thing that we have needed has fallen into place. I can't say that everyday I don't at least one second think 'oh lord, what if today is the day that something may happen' or 'will he grow up old enough to go to high school or ever get married, etc'. But all I have to go on, literally and honestly, is this gift of HOPE. Hope allows for those doubts but also for the enjoyment of not having to be upset until you have something to be upset about. I don't mean to burden all of you with these ramblings- but as one person reminded me of a quote 'laugh and the world laughs with you... cry- and you cry alone'. I really hope that I never need to accept that as truth. Thanks everyone for the support and I hope better news again tomorrow.


Dont forget- even though you can't post comments on this site- you can always email me at my personal address at: ashley_u233@yahoo.com

pics from day 3 after surgery






still a little puffy but all the diuretics have helped flush him out- we could actually see his eyes the next day :)

Wednesday, September 17, 2008

Good day- two videos and then pics and info

his FIRST feed since surgery, its just clear liquids right now because they don't want to overload his body and his lungs with too much fluid but here is what happened:


video

Tuesday, September 16, 2008

2nd day post op- very puffy due to increased blood flow to the head





he grabs at his crabbie :)

today they had tried to get him off of his ventillator and extibate him, but he wasn;t ready. he was doing very well, the machine wanted him to take 18 breaths per minute on his own and he was taking on average about 26 breaths per minute- but then his oxygen saturations plummeted from the 70s down to the 50s and he turned blue! they had to do immediate suction and someone used a bag to pump by hand to help him breathe. really freaked us (and aunt susan who came to visit with her friend) out very much. so, they put him back to where the ventillator did most of the breathing for him. he is starting to try and wake up- which they need him to do in order to see if he can breathe on his own- but his sats drop and his blood pressure goes up so there is a LOT of fine tuning to be had with his meds and getting him extibated. i just really wish i could hold my little man and make it all better. but they are keeping him sleepy and comfortable for the time being. we hope he does well tonight as they begin to try to wean him off of the ventillation support and then they will next talk about eating, etc....

parrish- few hours after surgery







the surgery went very well and the doctor was pleased with how it went. the hospital let murvin come in finally. we thought it would take all day long like his last one, so when the nurse called us a few hours into it and said the doctor needed to talk to us- we panicked and thought something was wrong! he walked into the room and i'm like 'you never leave the OR until you're done- what's wrong' and the doc goes 'but i AM done and he's fine'. I broke into tears I was sooooo happy! Now they just have to see how his heart eases into its new functions. the main reason for this surgery is to help the heart work less by circulating more to the lungs and will bring more circulation to the head (which can make them have headaches we're told). the doc also repaired his pulmonary artery while he was in there. it was easier seeing him this time than the last- much less wires but they were having a hard time balancing his blood pressures and oxygen saturations. he is on about 3 pain meds and a few other antibiotics and a blood pressure med at this point. they think they may be able to extibate tomorrow. he is on a ventillator this first day after surgery.

bathtime the night before surgery...




some pics from before surgery



daddy thinks they look alike- he likes his
hair :)



can you see the resemblance?? most nurses
think he looks like daddy but has mommy
expressions lol


lllloooooove my Peasley


they REALLY tried to make his crib 'fun'
but it just wasn't working. time i walked out
and came back in- a nurse- even the guys-
were holding him ALL the time :)

Tuesday, September 9, 2008

"Good Morning" song, hospital version lol

soooooooooo cute- even with all the wires!

video

attempt #2

he REALLY thinks he can take out this
IV- even with a sock over it for his own
protection lol



video

so smart- attempt #1

our little 3.5 month old is smart enough to try and
get his IV out :P he has been working on this
for days......

video

happy despite the monitors





So- we are still awaiting surgery news... could be any day now but enjoy the pics from the hospital and how much fun we are attempting to have while we are cooped up :P


Monday, September 8, 2008

Surgery NOT tomorrow....

Ok- well, the surgery IS NOT TOMORROW. It is tentatively rescheduled for WEDNESDAY. Reasons being:
- he has had blood in his stool all morning and has had 5 poops in a row (which is very unusual for him and excessive)- the x-ray he had this morning showed what may be 'air' in a place in his abdomen or intestine which could mean he has a 'hole'. So they are ordering more xrays to make certain it just wasn't a bad angel earlier- he has to have a nasal wash (where they push fluid into the nose and suck it right back out to check for infection) which should be fun since whenever he gets water in his face or spits up and it comes out of his nose he acts like he's drowning poor baby!- he has to have blood work done to check for different things, but the nurse doesn't want to have to stick and it be for nothing and then have to do it again tomorrow or the next day for surgery........I HATE having to hold him down for his xrays and stuff- hope he doesn't hold it against me when he's older :P
will update again as SOON as I know more info

Saturday, September 6, 2008

1/2 of an Angel's Heart

½ OF AN ANGELS HEART

It's a beautiful day up in heaven. Jesus is rounding up his tiniestangels, to go live on earth, and be born.

One of the sweetest angel says to Jesus "I don't want to leave, I like it here, and I will miss you".

He reassures the scared littleangel that everything will be okay, and that he is just going for avisit.

He is still not swayed on this idea. So Jesus kneels down, andsays, "How about if you leave half of your heart here with me andtake the other half with you, will that be okay?"

The angel smiles and says, "I guess that will work".

But the little angel is still a little scared. He asks, "Will I beokay with only half of my heart?"

Jesus replies, "Of course youwill, I have other angels there that will help out, and you will be fine."
Then Jesus gives the angel more details about his plan.
He says "When you are born, your mommy will be scared, so you have tobe strong, and when you feel weak just remember that I have theother half of your heart".
"Enjoy your time with your family, playand laugh everyday."
"And when its time to come back to heaven, I will make your heart whole again.
Always remember that you are not broken, just tornbetween two loves."

Friday, September 5, 2008

having his say lol

video

new pics


his new crabby friend to wrestle with- he is so bored

sleepy time with froggy

he just learned to lift his head while on his
tummy before we checked into hospital

you probably think i'm crazy but....

For those of you that know me fairly well, you know that I am a worrier. For as long as I can remember I have been a 'mother hen' figure- maybe even sometimes more like the little chicken who thought 'the sky is falling' lol. But being in this hospital room with Parrish has brought out so many emotions and insecurities and a protectiveness that I never knew existed. My parents always told me 'wait until you have kids and you'll understand'. And THEY WERE RIGHT. I don't care how many times we have been in the hospital and Parrish has had to have blood drawn, or an IV redone or an xray or some other kind of test- every single time it effects me the same way as the first. I don't think I can even get 'used' to the idea of him being poked and prodded. And sometimes when I'm having to hold him to have something painful done I wonder to myself 'what kind of mom am I to put him through this?' And then I quickly snap out of that and remind myself that these pokes and prods and tests are saving his life. By all accounts he wouldn't be here- so, yes he may be crying and upset- but at least he is there, in my arms, crying and upset.
Right now we are in our room and I have been trying to bring attention to some readings they are getting on his EKGs that while they arent 'concerned'- they make me concerned because what I am seeing is not ususal for my son. I know they are probably tired of me asking questions and wanting explanations- but I would rather them get annoyed 20 times a day at me then me not speak up and be the advocate for my son and something happen.
We are so close to this next surgery, and I appreciate all of the continued prayers that we have received. I feel somewhat selfish that I have not been able to express my gratitude to each and everyone of you for your words of encouragement, but please know that they do not go unnoticed or unappreciated. This hurdle we are about to face on Tuesday is somewhat like the last... they still have to stop his heart and put him on bypass. But once he comes through this there will be a HUGE sigh of relief and we can start making plans for you all to meet our little miracle.
I read a poem by another 'heart mother' and to sum up went like this:
"an angel asked God why he would send such a special child to this earth since he will have many obstacles to overcome and many people who may not understand. But God said he has loving parents and family waiting for him and I am sending down this special boy because " through him, they will see me'....."
I am not a preachy person and by no means try to play on sympathies, but in looking forward to Tuesday, I hope that you are all inspired by our little boy. God DOES show himself in everday signs and everday I see my sign smiling back at me - I do give thanks to God....

100 Wishes for Parrish

  • 1.a handsome look- madeline
  • 2.adventure- nathan
  • 3.all the love in the world- uncle matthew
  • 4.best of health- uncle matthew
  • 5.bravery- mommy
  • 6.charming personality- madeline
  • 7.common sense-jane
  • 8.compassion-jane
  • 9.courage- daddy
  • 10.curiosity-daniel
  • 11. generosity- mommy
  • 12. gentleness- mommy
  • 13. health- mommy
  • 14. humbleness- mommy
  • 15. humor-nathan
  • 16. inner strength- mommy
  • 17. integrity-matt
  • 18. intelligence- daniel
  • 19. long, happy & fulfilling life- uncle matthew
  • 20. many caring people in your life that you can call family & friends- the cowleys
  • 21. no regrets- uncle matthew
  • 22. strength-matt
  • 23. true love- mommy