Saturday, July 24, 2010

HOME sweet HOME!

Day 4 after open heart surgery...seriously, one would never know what this child just endured!! He was hysterical last night, chatting, crawling, and pulling up everywhere. I (Mom), am a nervous wreck! Not sure if it is just being on the other side of this journey, but the surgeon's discharge nurse scared me more about things we CAN'T do and what we don't WANT to happen (not that she thinks it will) more than the surgeon did about the surgery! First and foremost, NO child visitors (other than sibs and those are to keep a safe distance) and no public places for 6-8 weeks. She went on to make a list; church, store, Walmart, sporting events, birthday parties, school, family reunions, grocery store, mall, etc..basically full on home quarantee. She said one doesn't want that newly reparied heart to be compromised by any infection. We are to report back if any signs of fever, feeding problems, illess, fatigue, pain, redness, ooze, or drainage from incision (more about that another day), increased work of breathing, or chest pain. Then she told us that he needs to be in the car seat strapped correctly in case we have a car accident on the way home. WHEW! We are to keep the incision from getting wet (seems like a no brainer), but that means no spillage from feeding and even his own drool, not normally an issue, but as luck would have it he seems to be acting like he's cutting tooth! So, he wears a bib at all times but sleeping now. The nurse told us we are to "scoop" him, not pick him up under the arms, but that he can do what he wants physically. Well, let's just say he isn't any different than he was Monday! We thought he might be a bit cautious, but not a bit. He is crawling and pulling up on everything. I dreamt all night about his chest having some weird injury from all of this movement. I am hovering like never before. The only real problem would be trauma to the chest like falling on something (like coffee table or hard toy) while playing. We worked so hard to gain these skills and I was so afraid he'd forget them, but now I feel myself GASP everytime he does them! The nurse said kids know what they can do and won't do what hurts.

Many have asked what kind of pain meds he is on, you will be amazed to know only infant ibuprofin 2x's daily. amazing, huh?

Mike's post was so right, being home and seeing the kids can't be put into words. It was short lived with the kids; Mike, Taylor, and Mallory left for Tyler yesterday afternoon. You may recall Taylor's baseball team advanced to state the Sunday before surgery. State is this weekend. I almost cried hugging Taylor yesterday. It hurts my heart not to be there for him and I missed all of the sectionals games too. I've missed games before, but none so important as this. I know he understands, but nothing makes me prouder when he has a great hit or play and he looks to me in the stands and smiles from ear to ear. I am hoping someone will have their camera there and capture a few Kodak moments for me. Madeline spent the night at Grandma's and she and Grandpa left this morning for Tyler. So, a quiet house, just Parker and I. While I miss them terribly it probably is best to have the weekend to rest without them. I can rest and focus on Parker without feeling guilty for neglecting the other kids. I'm not comfortable leaving Parker to play alone or with the other kids in case an "accident" were to happen. Mallory is notorious for picking Parker up and I've had the "talk" about the importance of this now. One of the other rules on the "list" from the surgeon is "Supervise play with other children AT ALL TIMES." Good thing school starts in a few weeks, Grandma and I are going to be doing a lot of sitting on the floor!

We see the Cardiologist in 2 weeks and his Pediatrician too. But, the echos and other tests at hospital show a perfect repair. No leakage from the valve which is truly amazing! Dr. Fraser has an amazing gift
and he is passionate about helping children. We know that his hands were guided by the Almighty physician. I don't think anyone truly can understand that statement unless you've walked in our shoes.
My prayer is those of you reading don't ever have to understand what I mean, but I also know that if you do, "nothing is impossible with God."

I added some new pictures from the hospital on discharge day and the ride home as well as from this morning.

GO RED RAIDERS! Game time 8pm. Taylor, Mom loves you and so does Parker! Go big brother!!! XO

Friday, July 23, 2010

Discharge Orders!!!!!

Rejoicing, rejoicing, rejoicing!!! 3 wet diapers later and we have DISCHARGE orders!! They said we will be out by noon.So, 72 hours after open heart surgery and we are going HOME! Makes me tear up thinking about it! I'm not sure I've ever asked anyone to pray for pee before, but I know God hears even the littlest of prayers! I am one tired Momma, up all night (I know Mike posted they start early, but he slept thru most of the night and missed all the fun) syringe feeding Parker water and expressed breast milk is not an easy process in addition to his normal feedings. I have a permanent cramp in my back, neck, and my biceps (despite the lack of Jillian Michaels) feel exhausted. The report on Parker is fantastic, echo shows NO leakage of the valve, CBC, thyroid and all other labs "perfect" (Drs words), as were xray. Parker has already started rolling over to tummy and pushed to sit (did it at 5am in bed and I about had a heart attack waiting for his chest to explode or him to scream in pain) so he is physically gaining his strength quickly. He is only on Motrin every 6 hours for pain.We will be housebound for some time and while we would love everyone to come and see us we will still be on "germ patrol." We need to stay illness free. Parker has an amazing immune system, but continue to pray for his strength. Add a prayer for our house as Madeline has had a low grade fever for the past few days. Grandma has bleached and scrubbed to kill and germs.More later, but for now a picture of him eating his cereal this am...

Friday Morning

Please pray for PEE.....We are so close to Parker going home and the last thing they need ot see is that he can pass regular bowel movements. The drugs required stopped last night and he needs to pass these through his system. He is so much more like his normal self this morning, so that is a realy encouraging sign.

Thye wake you up so early here - 4:30am. So I figured to tkae advantage and post an update. I went ot the house and saw the other kids for an hour or so - better than an energy drink. I wish Lara could get a dose of this also. Sleep is at a premium right now and our hope is Parker can get released today.

He is progressing so well. We just need that fully saturated diaper. See pics----Thanks for all of your prayers!

Wednesday, July 21, 2010

Evening Two

I snuck out to Fannin while Lara and Parker slept to get some "real air". The Med Center really does close down after 8pm - even the smokers are gone. i just had to get out for a while.

I have a funny story to tell - Parker had to take some oral medicine tonight and the nurse held him for a moment -mistake....He put it right back down her shirt. So, while I was leaving I heard some of the other nurses ribbing our nurse about having to change clothes.......

Parker is doing great.....almost so well that Lara and I feel strange. We really do feel the Lord's touch on Parker. He is such a trooper. We appreciate everyone's prayers and all of the help we are getting. By no means are we "out of the woods", but Parker is meeting all of the milestones in very quick order.

I would give all the praise to God in what has transpired in the last 36hours. It seems like a week, but it has not even been 2 full days. Hours seem to creep by inside the hospital.

The nurses are used to picking these babies up, for us it is like holding a glass doll. We are senstive to the littliest of things and are so worried about "tangling the tubes". We'll get used to it in the next few days. We need a little Grandma MA touch also - Lara's Mom. She is covering the home front along with Aunt Dorothy and Grandpa Rich.

We ask for continued prayer for a couple of things:
First, that the chest tube comes out tomorrow - a BIG milestone - means we go home 24 hrs later. Secondly, Maddie has a fever and that she gets better by the time we arrive back home.
Third, safe travels for Uncle Matt - he left today. It sure was nice seeing him and having him here for a few days. Lastly, that Mom and Dad take whatever slivers/shifts they can and get some restful/peaceful sleep.

Good night and God Bless - we hope all is well with you.

Day 2

Wow!!! Mom and Dad got some sleep at the hotel last night - per our the staff's orders - and we got back up to ICU around 6:30 am. To our amazement, a couple of tubes were gone. Then, as the morning progressed, a couple of more tubes went away. Then, we heard rumblings of moving later to 15 (15th floor - GOOD). Then, Lara got to breast feed and Parker became much more lucid......

It is now 11:30am and we are in our own room on 15th floor. The two chest tubes are all that is left and Parker is breast feeding for the 2nd time. Can I say, AMEN..........There is talk that tubes could come out tomorrow or Thursday. Discharge, provided no setbacks, is usually 24hrs later. Friday IS a possibility!

Pictures (less graphic for those that I emailed directly last night) will be posted later today. EVERYTHING at this point is good news. Off to hug my boy......

Tuesday, July 20, 2010

Last Post Surgery Day!

last update for tonight..Parker's breathing tube and NG tube are gone. He is sleeping now, intermittent periods of waking, just had a good one while another NICU baby was crying..even got a smile! They may give him some clear fluids tonight and hopefully we can hold him and i can feed him in the late morning. Things look positive to move to the 15th floor early afternoon, so pray for an uneventful night and no complications. Mike and I are going to get soem rest. This has been a marathon day and tomorrow we need some sleep. The prayers have been precious; we certainly feel God's loving embrace! Two pictures from today, one from right before they took him back and one tonight. The Drs told us how loving he was today in prepartion for surgery, lots of hugs, cuddles, and sweetness. They said they wished they had asked us if they could take pictures, apparently they don't get a lot of hugs..go figure!

Trusting and thanking God for his goodness!

Parker's Day -Praise God!!!

We just had our 3rd consult - this time with the Surgeon. Parker is out and being prep'd for CVICU and for us to see him (about 1 more hr!!!). Dr. Fraser said no surprises and everything went according to plan. He actually had a smaller second hole they repaired also.

We still have some critical milestones for Parker to overcome in the next 24-48 hours - breathing on his own, all vital organs and brain functioning properly, no bleeding, and of course no infections. Thanks for everyone's prayers - I cannot describe the warmth and comfort we all felt today. Not to say that MY heart did not jump every time the buzzer went off.

Once we get to see our little guy we will update again. Praise the Lord!

Parker's Day V2.1

Second update...all going well, no problems at all, mitral valve replaced, only surprise was instead of two small ASD holes one large GAPING hole. Doesn't change anything, just affirmation that this WAS the right thing for Parker. Fraser is finishing patching the hole, should be done in 30-45 minutes. Next update at noon. We are all well, grateful to God for his goodness!

Parker's Day V2

1st Consultation went well. Font Party of 6 your table is now ready.........

As Amy, our Physician's Asst. stated, boring is good and Parker has done great.

We are 10 minutes from incision time. I will keep updates posted.

Here's pic from this morning. Font Clan is keeping the waiting room lively to say the least.

Parker's Day V1 7:45am

Parker is currently in pre-op. Mom, Dad, and Uncle Matt had the heart-breaking experience of leaving our Parker with the surgeons to go "play airplanes". Beleive it or not, pre-op takes about 1.5 to 2.0 hours. We will be gettign updates every 1.5 to 2.0 hours - wireless is good - so I will try to do my best to keep the site updated (might not be as inspiring as Lara - but I will try to introduce some of oyu to my wit!).

I am exhausted - for the those following - Taylor's All-Star team won last night and will be headed to Tyler for State this weekend. For the boys, this was a great mental diversion. What a special experience for the boys!

I have the "pager" next to me on the table. It is essentially the same as what you get at the restaurant - which I will never look at the same way again. We are all wearing Parker's Prayer Team shirts - a big hit the hospital staff. Lara really did a great job with all of this stuff - might have overpacked - but a great job nonetheless.

Thanks everyone for your prayers. Please lift Parker up in the next few critical hours. Stay tuned for more updates

Monday, July 19, 2010

Pre Surgery Update

Today was the 6 hour marathon testing at TCH. Parker was a champ, endured all the test with his charm and didn't fuss much even when they needed to do a second blood draw. For some reason we never seem to get the orders right for Parker and blood draws..last time we had to go back a week later since they didn't draw enough blood. Parker had lots of fun pulling the EKG stickies off, that boy is in to everything! After being there all day, the nurse said there was a chance we'd be rescheduled, WHAT?! They have several sick babies that the perfusionists are tending too, so if they don't get well, no surgery for us. The Dr's office did call a little while ago to say we were "a go, barring any unforseen issues.." so please pray these babies get better and we go forward. Pray for the surgical team, Dr. Fraser, Dr. Mossad and anyone else that will be handling our precious boy tomorrow. Pray that there are no complications, that it is an uncomplicated repair, and that Mike and I get a few hours sleep tonight. The boys are in Huffman playing their last game for Sectionals. The weather is "iffy," so add a prayer that the rain holds out just a few hours more! We report to the hospital at 6am tomorrow, surgery starts at 7am. Not sure when I will get a chance to update here, but check our caringbridgepage for updates.
Blessings!!! Looking forward to a healed heart!!!

Saturday, July 17, 2010

Parker's Prayer Partner

I finished the shirts for us to wear to the hospital (thanks E! No Greater Gift for such a great idea) and the kids thought they were so cool! The girls wore them today to their tumbling lesson. Taylor wore his all day too. Isn't it funny that the little things can be so impactful? They came out great and I know they will be a constant reminder that God truly has a purpose and a plan for Parker and all of this! I have his other scriptures printed with the same picture for his crib in CVICU.."be strong and courageous.." Mike laughed when he saw me with the iron, said, "now you know how to iron!" Not quite honey..I'll leave that task to you, Grandma, or the cleaners! The baseball boys won their first sectional game last night 17-5, they are in Huffman now, but looks like tonight will be rained out. Never a dull moment around here!

Wednesday, July 14, 2010

Be Strong and Courageous!

We are less than a week away from surgery! As we prepare mentally and physically this verse continues to minister to our souls. Joshua 1:9 " have I not commanded you? Be strong and courageous; do not be terrified; do not be discouraged for the Lord your God will be with you wherever you go." This verse will be taped on Parker's bed in the CICU as a visual reminder for all of us! Courage is facing difficulties and obstacles, knowing God has promised to be with you. Joshua could move into the land with strength and courage, focusing not on the obstacles, but on God, who is completely trustworthy. We are moving into surgery peaceful, not focusing on the obstacles, but on God who is completely trustworthy!

Many have asked how are kids are managing...we are filled with thanksgiving and praise, they are all confident and not afraid. So many of you reminded us that kids don't have the same "hangups" as adults, boy, were you all far the biggest questions we received are "can I borrow Parker's fan from his room when he is in the hospital?" Uncle Matt and Aunt Dorothy are coming too, so the excitement of their arrival outweighs anything else. Love how God gives even the smallest gifts!

A few pictures of Mallory's favorite playtime activity with him a "haircut" before bed...

Thursday, July 8, 2010

God is real, no matter how you feel

Thank you Rick Warren for letting the Holy Spirit speak through you to me..

Isaiah 8:17 " The Lord has hidden himself from his people, but I trust him and place my hope in him."

"It is easy to worship God when things are going great in your life-when he has provided food, friends, family, health, and happy situations. But circumstances are not always pleasant. How do you do when God seems a million miles away?

The deepest level of worship is praising God in spite of pain, thanking God during a trial, trusting him when tempted, surrendering while suffering, and loving him when he seems distant.

Friendships are often tested by separation and silence; you are divided by physical distance or you are unable to talk. In your friendship with God, you won't always feel close to him.

Phillip Yancey has wisely noted, "any relationship involves times of closeness and times of distance, and in a relationship with God, no matter how intimate, the pendulum will swing from one side to the other." (Reaching for the Invisible God; Grand Rapids: Zondervan, 2000, 242)

That's when worship gets difficult.

To mature your friendship, God will test it with periods of seeming separation-times when it feels as if he has abandoned or forgotten you. God feels a million miles away. St. John of the Cross referred to these days of spiritual dryness, doubt, and estrangement from God as "the dark night of the soul." Henri Nouwen called them the "ministry of absence." A.W. Tozer called them the "ministry of the night." Others refer to the "winter of the heart."

Besides Jesus, David probably had the closest friendship with God of anyone. God took pleasure in calling him a "man after my own heart." (1 Samuel 13:14; Acts 13:22)

Yet David frequently complained of God's apparent absence:

*"Lord, why are you standing aloof and far away? Why do you hide when I need you the most?" (Psalm 10:1, LB)
*"Why have you forsaken me?Why do you remain so distant?Why do you ignore my cries for help?" (Psalm 22:1 NLT)
*"Why have you abandoned me?"(Psalm 43:2,TEV)

Of course, God hadn't really left David, and he doesn't leave you. He has promised repeatedly, "I will never leave you nor forsake you." (Det 31:8;Psalm 37:28; John 14:16-18;Hebrews 13:5)

Tuesday, July 6, 2010

New Skill!

the 4th was a busy weekend! I noticed on Saturday that Parker was sitting in the living room and I asked Taylor, "did he sit up by himself?" "Yes, mom, he does that.." then after nap when I came upstairs to get him, he was sitting!!! Over and over this weekend he went from sit, to crawl, to sit...YEAH! I recognize this is a small step, but so exciting! And then yesterday he was standing in the crib! He's been trying to pull up on things, but from his stomach using his arms only to pull, so my guess is now only a matter of time before stair gates need to go back up. So, here's a question...we started using kinesiology tape on his abs at the recommendation of his PT (I wore it on my biceps for a day to see if I could "feel" it). All of a sudden he is using his legs to crawl and the pushing up to sit happened! Probably a fluke deal, but maybe there is something to the psychology of the kinesiology tape! That and the NACD crawl boot camp, the PT/OT and constant practice maybe...If nothing else, he is in good company..the Olympians use it, LOL..forgive the "30 day shred" workout tape...I have to get my workouts in, Parker and I love that Jillian Michaels :)

Some pictures from the 4th..a great long weekend!!! I know Taylor seems absent in the pics, he is usually at baseball, so pics with him these days are few and far between. Mallory is refusing to smile, she is about to lose her top tooth, wish it would come out already! Tomorrow we have an ortho appointment..maybe he will "help" it come out, she won't let me touch it!

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