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.

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!

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?

SUPERMAN!

My son, Luke, is my hero. Seriously.

As I write this, we are 24 hours post surgery and he has made amazing progress. Early this afternoon they extubated him (pulled his breathing tube) to see if he could breathe on his own and he did pretty good. His lungs were still wet and sounded gurgly but he sustained breathing on his own.

I left the hospital after a LONG night of hearing many alarms coming from the many, many monitors that he is hooked up to. I needed sleep and the nurse told me to go get some at home since I most definitely would not be getting any by Luke's bedside. So at 6:00am when most people are getting off to work, I was rolling home to go to bed. I managed to grab some zzz's but felt really anxious to get back to my baby. I called to see how he was doing and was told that they had pulled his breathing tube and, honestly, I must admit I am glad I was not there to see it happen.

Seeing him this afternoon was incredible. He is so beautiful and I loved to see his face with less "stuff" attached to him. He was pretty peaceful until he decided that it was time to wake up. About then he realized that he was in pain, lots of pain and proceeded to let us know. Nothing is worse to a parent than not being able to help your child. I felt frantic as I watched him struggle to breathe as he cried. He was turning blue, in distress and obviously in pain. It felt like an eternity passed as the nurse got him some pain meds. They had taken him off of his narcotic pain meds so he could breathe on his own but in the mean time the other pain meds had not been sent up from the pharmacy. Did I mention yet that I was FRANTIC? When he finally got his morphine I'm not sure who felt more relieved--me or him. It was crazy to see how fast he checked out after that.

Thus beginning the very delicate balancing act that the nurses in the PICU find themselves doing. Luke was no longer in pain and was still breathing okay on his own. Then his blood pressure started to drop. More beeping from monitors. I'm feeling like a psycho mama bear by this point. Things finally settled down but by then I was wasted emotionally. Somehow I am supposed to keep making milk for this boy but the stress is killing my supply.

The cool thing about the nurses is that they are very ambitious in wanting to help Luke. He has his own nurse caring only for him so he gets excellent care. His day shift nurse, Molly, decides maybe we can try a bottle. I think to myself, this chick is obviously a crackpot! But seeing as she has been a PICU nurse for 25 years I decide she knows more than me and we go for it. As a side note, kids with Down syndrome are notorious for their feeding troubles. Add to that a kid having heart failure and it gets doubly difficult. Luke had done pretty well despite those odds until about 2 weeks ago when it became really obvious he was struggling to eat. For a kid in heart failure its like trying to eat while running a marathon, that how hard their hearts are working! Anyhow, it was taking him about 30 minutes to eat 2 ounces. Not good. Today though, he took 2 ounces of pedialyte and POUNDED it in 2 minutes. YEAH!!

So why is this post called Superman?? Well, what I didn't tell you yet was that when I went back to the hospital today I found my sweet, innocent, 3 month old baby in RESTRAINTS. Seems that he had decided that he wasn't into all those tubes and wires attached to him and he had been pulling them out. Part of me was so amazed that not even 24 hours after having open heart surgery my supposedly weak baby was giving the nurses a run for their money. Yes, I will admit that I even felt PROUD of him. That is my boy--coming out swinging and ready to rumble.

I have great hope. I am cautiously optimistic. I am tired. I am completely in love with a 12 pound blue eyed boy. He is Superman.

Free Fallin'

We jumped and we're free falling but I can see the bottom and its going to be okay. Luke is done with his surgery and things went really well. The bottom 2 photos are pre-op in his oh so stylie hospital jammies. The top 2 show the aftermath. I'm sure to everyone else it looks scary to see all of those tubes coming out of him, but to us all we can see is our beautiful boy with a heart that's finally the way it should be. Please, continue to send out your prayers, good vibes and whatever else you people have been doing because we feel it and we are SO grateful.

I might add at this time that I am also extremely grateful for handheld devices. Time flies when you can indulge your inner Crackberry/IPOD junkie and it keeps your mind off of the fact that your son is on a heart/lung bypass machine...

So now back I go to Oaktown, to my sweet angel who looks so amazing to me right now, tubes and all. I will be spending the nights with him whether he knows I'm there or not. I am not looking forward to sleeping on that thing they claim is a pull out bed.

And as the title of the blog says we are still free falling. I will feel like we have landed on firm ground the day I take my fat little guy out of the hospital and back home where he belongs.

Be okay, right?

Get Ready, JUMP.

Well, we made it through the day! A day of ECG's, Echo cardiograms, X-Rays, blood tests and meetings with the nurses. Oh, and the uplifting tour of the PICU (pediatric intensive care unit). Note the facetious undertones. Pre-op visits are interesting to say the least

All in all the day was not that bad. As you can see from the picture above, Luke was even wearing green in honor of St. Patricks day. That did not, however, keep him from getting poked, prodded and pinched. I tried to explain to him that our actual purpose in going today was just that--poking, prodding and pinching. Poor kid! Actually, Luke was calm as usual even as the phlebotomist used him as a pincushion trying to get enough blood for all of his tests. His blood clots really fast making him a hard draw.

We will go to Childrens Hospital at 9:00am tomorrow and check in. After a meeting with the surgery team they will take my sweet boy from me and go fix his broken heart. I was so glad to have the defect explained to me in terms I could actually understand. Sarah Scott, the cardiac RN in charge at CHO (accronym for the hospital) expained it to me in terms of construction. I FINALLY understood how it all works! Or in Luke's case, how it doesn't :(

So, back to my previous cliff metaphor.... Here I am now edged closer and about to jump. I'm ready and so is Luke. Here we go.

Yeah. Whoa.

Okay, so I am new to this whole blogging thing. I was so excited to see if people had actually checked this out and was so happy when I saw that a few of my friends had posted comments (thanks guys). So I followed the links to their blogs and um, wow. Yeah. Wow. They are amazing. Okay, so which one of you girls is gonna come over to my house (post surgery of course) and SCHOOL me??!! (Cathy?)

On a different note, I write this post late(ish) Monday night. Tomorrow I will be meeting with the team of doctors and nurses that will be helping Luke. I feel like I am standing on the edge of a cliff about to jump or rather be pushed. Everyone keeps saying it'll be okay and that makes me wonder if they are looking at the same drop that I am. Ah, blessed perspective. If I pull back, my view does change and I can see the "big picture". But honestly, this isn't a "big picture" moment for me. I need to focus and keep looking at the here and now for Luke. Just like with every other big event in my life, I know this will be over before I know it and I'll blink and he'll be 2. I am so glad to be dealing with all of this in this season of my life, having had some years of experience under my belt. I am wise enough to know that I really don't know much. All I do know is I love my little Downs boy so much that it hurts at times, that this will be over soon and that I really shouldn't write incoherrent (does this thing have spell check?!) posts when I am sleep deprived....

Who's ready to watch some cliff diving?

Surgery for Lukas

Well, the time has come a bit earlier than anticipated to fix Luke's heart. He goes in at 8 a.m. Wednesday the 18th of March. The day before his big sister, Anneliese's birthday! I'm not as nervous today as I have been in weeks past. I feel more resigned to the fact that whatever is going to happen is going to happen. It is a good, peaceful feeling. (That may change after I spend ALL DAY at Childrens Hospital Oakland tomorrow doing all of his pre-op and I am looking at the PICU!) As I have said before, the fact that Luke has Down syndrome does not phase me. To me and my family he just is who he is. The heart defect (AVSD defect) though, has thrown me for a loop for sure.

I will try to update this as frequently as possible with pics and info about Luke and what's new with him and the rest of our crazy mob. We are hoping for the best and are so grateful to our friends and family for all they are doing for us. THANK YOU!!!