Thursday, May 6, 2010

Round 2


Well, looks like it's time to hop back in the ring.

We've been following up with Luke's cardiologist ever since his surgery last year. Pretty standard for open heart surgery. This past January, during his routine echo-cardiogram, his doctor noticed some problems cropping up. We've been keeping an ever watchful eye on him since and attending his many appointments. On May 5th we went back (again) and received the news that our chunky monkey will be enduring open heart surgery once again. Hopefully, for the last time.

Since my last posting (so,so,long ago), Luke has GROWN. At a very healthy 27ish pounds and 33 inches long, he has surpassed our wildest dreams of where he would be at this age. He is a typical 16 month old boy. His M.O? DESTRUCTION! If it can be dismantled, ripped, beaten and or a combination of all, he will have at it. Actually, he'll have at anything. As I type this he is very busily "taking care" of the recycling (read: unloading the entire basket). No one is safe from his whims. Our old, sweet dog, Sutter patiently endures all sorts of "love". The cats have learned to RUN when they see him. And, we are endlessly amused and enraptured by him. He is magical. We all sit around watching him explore the world around him and in turn we see the world anew. His new favorite thing to do is put his socks in his mouth and carry them around like a dog. (He has been watching his dog brother carry around his stuffed animals that way). He climbs the furniture,has learned that he can remove the floor registers and stuff things down the ducting and knows that he has 6 people who think the sun rises and sets on him.

Life can be crazy sometimes. Everything seems to happen all at once or in groupings. My mothers husband, my step Dad, Bill Ormond, lost his battle with esophageal cancer in February leaving her a widow for the second time. I was there with them when he passed away. It sucked to lose a Dad AGAIN. My oldest sister, Lisa, is in hospice care for ovarian cancer. She has been brave and patient and graceful. She is an angel. I have literally never heard her say one negative thing about anyone or her circumstance. The cancer is in addition to the M.S. she has had for many years. I have had many people say to me, " why does all of this have to happen at the same time?" or "why do so many bad things happen?" Honestly, I think, why not? What about the people who lost so much during hurricane Katrina? or the tsunami? or the earthquakes in Chile? or the parents who lose their child to a hate crime?

Life is amazing. And wonderful. And at times, painful. At the end of the day all of the things that we experience in our lives make us richer in compassion, wiser if we allow them to. We can take all of the tears, laughter, heartache, joy and be there for the people we will meet who are just starting their journey along the same paths. I have hope. Lots of hope. I can't help but think that someday there will be parents of a small child who will need an anchor in the storms that surround you while watching your child go through such a major trauma. That someone who is losing or has lost a loved one will need someone who understands. I have to admit that all of these things have softened me as a human being. I have always been a really optimistic person but these past few years have refined me even further. I have learned to think before I speak (mostly) and see that usually when someone says or does something hurtful it's unintentional.

So, y'all.....here we go. We are ready. Luke is strong. The bell is about to ring and he's going to knock this one out.

Thursday, April 9, 2009

Giggle Giggle!!




NOTHING beats the sound of a baby's giggle.

Tonight Luke giggled for the first time. YUMMY! He was snuggling with his Daddy and having a fun ol' time when it happened. Mike buried his face into Lukie's neck and growled as only a Daddy can and Luke broke into a giggle. Mike called me over and of course everybody wanted in on the action so within minutes most of the mob was watching as our newest toy (Luke) kept us entertained. Could he be any cuter? Hmmmmm, nope.
We also put Luke on the rug tonight to give him some tummy time. Now that his chest is healing, he can stand more movement and he loves it. Mike and I stare in awe and amazement as our supposedly "slow" baby wriggles and writhes his was around the carpet. Our continual mantra that we say is obviously Luke did not get the notice that he has Down syndrome and that he is supposed to do things on a slower pace. As he gets older he may in fact "fall behind" but we feel like he will always be right where he needs to be.

I love having a kid with Down syndrome. Every person in this family will become a better person from being around Luke. We will all learn to slow down and enjoy life more, to be more selfless. I hope. He is so sweet and I am smitten.
I am posting a couple of pics of Luke with his Dad and his biggest brother, Mike.

Let the race begin. If you happen to swing by and peer in our windows you are likely to see 6 people making crazy faces all just to make a baby giggle. Life is sweet.

Tuesday, April 7, 2009

I'm Still Here!!!

Bet you thought I had dropped off of the face of the planet, huh? No such luck!

Life has been pretty hectic and tiring since Mr. I'M STARVING!!!! (his words, almost verbatim, I swear) returned home. I kid you not, he just does not stop eating--ever. We are amazed at the quantity of milk that he can pack away. I am beginning to think that the legendary hollow leg actually exists. As a result he has been gaining weight rather rapidly. Okay, the truth is, at this pace the boy will be morbidly obese by, say, hmmmm, next week??!! In fact as I write this post, my husband Mike is sitting with Luke on the couch and he just finished feeding him. Luke is still fussing a bit. Mike looked at him and said, " You can't possibly still be hungry!" I said, "Wanna bet?"

Luke had his stitches removed last Wednesday and his incision is healing so well! The official call as of now is that the left valve is still leaky and that we will continue to watch it. Hopefully it will close into less of a leak thus eliminating the need for any future surgeries. Luke was very chatty with the 2 cute female interns and flirted away. His wily charms worked and he will taking them both out for sushi next weekend. Not bad for a 3 month old I'd say....

I am trying to get life to a somewhat normal place again. I still have to be careful about bringing him out in public (germy awful place that it is and all). We have to handle him carefully as well. No picking him up under the arms, we scoop him up under the bum and back instead. I am still a paranoid freak although the tendencies to shoo everyone away are dissipating. Being home again means back to laundry, house cleaning, carting kids to and from wherever they need to be, paying bills and such. Wait, that's right, those things AREN'T getting done. So if you drop in, I will blindfold you until we get to a clean room. Hmmmm.....do I have one of those? Call first!

I have resumed running (read jogging) again. My friend, Michelle, and I will be running one race every month until July when we will lose our ever loving minds and run a 1/2 marathon. Why am I doing this, you must be asking yourself (I know I ask myself that all the time)? Mike has been out of high school for 20 years now. I know, I know, dang, he's OLD! That being said, I do not want to go to his reunion in August looking like I am still expecting when the baby will already be 8 months old. I realize that that statement makes me seem as deep as a puddle, oh well.

Short post. Sorry. I will write more tomorrow and post current pics of the Fat Man and the other kiddos. Truth be told, the only reason I posted tonight was that I am receiving calls and e-mails from my mother and her twin sister,Judy wondering why I haven't blogged. They are double teaming me! You can thank them for more of my senseless rambling.

We'll talk more tomorrow, about dawgs and dawters (said with NY accent of course!), okay?

Wednesday, March 25, 2009

Birthday Surprise for Liam!





Today is Liams 10th birthday.
When I asked him what he would like for his birthday, he told me he wanted his baby brother to come home from the hospital. Sweet, huh? I told him that that wouldn't happen until Friday.
This morning I knew that I would be doing training at the hospital so I would be prepared to take care of Luke at home. I brought his car seat along to do an oxygen saturation test to make sure he would be okay on the car ride home. I scrubbed in and went to his bedside where I was met by his nurse, Anna. She looked at me and said, " Looks like you are ready to take your boy home! Would you like to today?" UM, YEAH!!!

So, I did all of the training I needed to do--infant CPR, how to watch for signs that something is wrong, etc. The docs performed the last echo cardiogram to check on the fluids that had been around his heart and lung. All of the fluids were gone, the valve that was still leaky had gotten a bit better. And by 4:00pm I packed my sweet blue eyed boy into his car seat and we drove off to face rush hour traffic together.

There will be many follow up visits, that goes with the territory. But, my baby being home with me is about the sweetest feeling ever.

I called home to let the kids know that I was bringing home a surprise for Liam's birthday. I called Mike to say the nurses had given me a gift to give the birthday boy. I loved seeing everyone's face when they saw Luke home. Liam asked if we got to keep him or if he had to go back. I hope he never has to go through anything like this again.

As a side note, I LOVED the staff at Children's. They were all so amazing at their jobs. His nurses were so dedicated to us and helping us through the most difficult times and cheering on his successes. Thank you is just not enough to say.

The pics above are of Luke getting his last lead removed and him at home, where he belongs. Oh, and the big 10 year old, Liam. All photos taken by Mikey. Thanks, bud.
I'm not done with this blog thing. Stay tuned for more tales of the mob. The Edlinger Mob.



Movin' On Up







As the title of the blog says, Luke has been moved! He was taken from the PICU and put in the NICU on Monday afternoon. He had been doing well and they needed the bed space in the PICU. So, Luke went from being the little fish in the big pond to the big fish in the little pond. He looks enormous next to all of the micro preemies and preemies in with him.
Luke also had a special visitor on Monday. My aunt Judy from Las Vegas was in town and came by to see him and hang out with our family. It was great to have her there while they moved Luke to his new "room" and he even performed for her with a few of his famous lady killing smiles.
Tuesday we saw even more progress. Luke's last line was removed from his neck and he was taken off of oxygen and is now completely on room air. He now looks like he did when we brought him to Children's. No wires, tubes or lines poking out from him. It feels so incredible to see him looking so healthy!! He has been eating like a CHAMP and the nurses joke that if its been an hour and he makes a noise he must be starving--again.
He is so quick to smile now, too. So of course I spent all day yesterday screwing my face up all crazy trying to get him to smile. Seems the face he likes best so far is when I open my eyes really wide and stick out my tongue in imitation of him. He is outrageously cute and I am loving each new moment with him and his new lease on life.

I am off to the hospital this morning to do all of my discharge training so I will know how to handle his new needs at home. I am so excited yet nervous to bring him home. The kids will be home for Spring Break this upcoming week and it will be so nice to not have to deal with school schedules for the first week Luke is back. I know the kids are looking forward to spending time with their baby brother. They have missed him.

My 2 parting thoughts are these:

1: Luke is a pig. They weighed him 2 nights ago. 11lbs.6oz. They weighed him last night. 11lbs. 11oz. I have a feeling he's gonna be a BIG boy. That's the way I like 'em. Nice and thick.

2: Last night was probably one of the most terrifying experiences of my life. As I left the hospital to go get my car at the parking garage, I decided to take the elevator as I had parked on the 5th floor. As I stepped on the elevator by myself, it gave a weird little jerk. Hmmmm. The doors slid shut and I pressed the button for 5. Up I went until right before the 5th floor the elevator stopped and the lights went out. I pushed the button again but nothing happened. Then the floor dropped beneath my feet. I wont repeat what I said at that moment but I really thought I was going to die. It stopped dropping and I was freaking out. I picked up the little phone in the box ( now I can check that off my list of things I've always wanted to do. I've wondered if they really work.They do.) and the operator picked up the other line. Right then the elevator did a big drop again and I told the lady I didn't want to die, that I had 5 kids and to please send help QUICK!!! I've also often wondered what thoughts would go through my mind if I was about to die or thought I was. Trust me, you don't think about the things you think you will! I literally looked up and said to God, " You have got to be kidding me, right?!?! I am not ready to die yet and I just got a kid through major surgery. Seriously, this sucks."

Not exactly the conversation I thought I would have with God. I'm sure he was amused. All in all I was trapped for 45 minutes and went from calm to freaking out each time the elevator dropped. The only positive I could think of from all the drops it made was, sweet I'll be closer to ground when it drops completely. Also, I did sit on my ample behind hoping it would cushion what I felt was an impending blow. Obviously it ended well. They used a back up generator to restore power to the elevator. I'm alive so I guess it's true that only the good die young. I will admit that the thoughts I did have were very revealing and helped me clarify further what really matters to me in my life.

Well. I'm off to the hospital now. Thanks for reading my long rambling thoughts. I hope that you like reading these posts as much as I like writing them.

And YES, I will be taking the stairs when I get there.

Sunday, March 22, 2009

Roller Coaster part 2 / Graduation!






As low and down as I felt yesterday, I really needed the up of today.

I arrived at Children's to see my baby boy and as I stepped past the PICU doors to wash my hands (for the 1000th time) I saw a group gathered around Luke's bed. My heart sank as one of the nurses waved me over looking quite serious. I was anticipating bad news. I walked over and she said, " Good news! We pulled his chest tubes and his arterial line today!"


For those of you have ever been through anything like this, you'll understand what I'm about to say.


After she said that to me I swear, I could fly. I could have run a marathon no problem for all of the joy and adrenaline pumping through me. Like I said in the previous post--Roller Coaster!! I can't really put into words sufficiently, but as low as the lows are, the highs are even higher.


He had gone all night with no arrhythmia's, no climbing heart rate.


Part way through the day Luke graduated into a "big boy" bed. ( See pics) He looks so good to me. With each new tube, wire or probe that is removed it feels like we are so much closer to having our boy come home. Each little step feels like such a big triumph.


Luke and I had a great, mellow day just hanging out together and I even got to hold him. My arms have been aching to hold my little guy. I'd be a liar if I didn't admit that I was nervous. He still seems so delicate and I was afraid to dislodge the lines he still has coming from him. Snuggling him was just what the doctor ordered (pun intended...).


He also had visitors today. My friends Susan and Lori came by to say hi. Susan's daughter had the same operation a little under 2 years ago and she has been my guide through this whole deal. She is always so upbeat and positive that I can't help but feel like it's all good when she's around. Seeing her daughter, Charity, also gives me comfort and hope. She is a healthy, strong, adorable little girl who's doing great with her fixed heart. Mike also brought all of our other kids out today. As you know, we're kind of a motley crew so we got some pretty sideways glances from the nurses in the PICU and some scoldings of not to have so many people at a time by Luke's bed.OOPS...


I'm off to bed now. The rest of the house is silent and sleeping. So I'd have to say my final thought for the day is, who knows what tomorrow will bring? The only One who knows isn't giving me any more answers. Guess His last answer to "be prepared" still stands....but that's a story for another day!

Saturday, March 21, 2009

Roller Coaster







I am beat. Straight tired.
I didn't even blog last night. I literally came home from being with Luke and went to bed.

The past two days have been a roller coaster of events and emotions at Children's Hospital. Yesterday Luke did fairly well. There were a few episodes of pain and monitors beeping and adjustments to meds that needed to be made.

This morning I called to check on him. I usually call several times a day when I am not there to see how he is doing and if any progress has been made in his condition. When I spoke to his nurse (one I did not know yet) I was given the report that they were working on him. What? What do you mean working on him?!?! Right at shift change the incoming nurse noticed his heart rate climbing--quickly. 140bpm, 160bpm, 180, 200 --man something isn't right. She also noticed that he was having arrhythmia (irregular heartbeats). None of this was accompanied by any activity or stress-- in fact his blood pressure barely budged. After 2 doses of a medication things seemed to settle. Things like that are scary because they don't know what causes the malfunction. It's like faulty wiring in a house that causes the lights to go haywire.

I can't really even go over all of the other things that happen during the day. All I can say is that I am tired. I am not really doing anything physically draining but my body feels trashed. I have guilt that I only get up once at night to pump milk for Luke.

So, this post is short and not well thought out. But I do have to say that I would be lost without all of the people who have stepped up to help me and my family. Parents from my daughter Olivia's class are bringing meals in. My sister-in-law Liesl has pretty much stepped in to take care of my kids at home while she is still taking care of her own family. Actually, she is amazing and I adore her and will be in her debt forever. My mother who has spent the weekend holding down the fort.


I have another friend who is there for me day or night to talk to and always knows what to say, who's general presence calms me like no other. Thank you. I hope you know how much you mean to me. How much you are loved by me.


So back I go to my second home--the PICU. To my other family--the nurses and doctors helping Luke.

I guess generally speaking life is like a roller coaster with twists and turns and drops where you feel like your stomach is going to drop out. But sometimes its not exciting, just freaky. The truth of the matter is that on life's roller coaster you can't see the track ahead to anticipate when that hairpin turn is going to come--thus you can get a pretty gnarly case of motion sickness and whiplash. Well, since I can't get off the ride I guess I better sit down, buckle up and hang on.

Anyone have one of those motion sickness bags from an airplane I can use?