Super Logan is HOME!

We did it!  We made it out of the hospital on Tusesday July 3rd!!  Monday night was another struggle staying in the room.  I know it's a growing trend, but I will really lobby for SLCH to get private rooms for all patients some day.  It is TERRIBLE to share a room, especially with babies that don't sleep through the night and never wake up at the same time.  It was just very awkward.  This poor, young family came in.  They were scared.  They had a 2 week old son whose heart had been racing.  Their home hospital couldn't handle the case so they were brought to SLCH by part of the very same team that brought us there.  It was about 10 pm when the arrived.  They were scared and confused and I felt just terrible being the girl sitting on the other side of the dividing curtain listening to all of their conversations with the doctors and their tears as they worried about who would stay with him and their struggles to feed a baby that hadn't eaten in almost a day due to all of the tests.  It just wasn't fair to them.

Tuesday morning came along and everything was looking up for us.  Logan was gaining weight and seemed to be back to himself.  We had to wait until nearly 10 am for rounds to come through, but when they finally did, the Dr. said "How do you feel he's doing?"  FYI, we have come to learn that this is a good phrase.  A very goood one.  They are testing the waters to see if you are ready to take him home or if you need to stay another day.  We were ready, very raedy to get home.  HOME!  We asked if there was any reason we couldn't go home and the answer as just two doses of Viagra.  Yes, Viagra.  I believe it's originally intended use was to get blood moving.  Laugh if you will.  We did. 

So there it was, just like that we were on our way.  It took a few hours to track down the prescriptions we needed, followup appointments and pack all of our belongings but we were going home and were thrilled!  Logan was almost back to Logan.  He was eating more than he had pre surgery, he wasn't sweating anymore, he was smiling and laughing again and was completely normal.  We felt good.  His echo, EKG and chest x ray came back and in our minds, if cardiology said it was safe to go, we were out of there!  

5 days, just 120 after open heart surgery - cut you open, stop your heart, patch some holes, shock you back to life surgery - we were going home.  For the record - I am really glad that I have no idea what actually happened in that operating room.  There was mention that he had a few problems getting off of bypass but I am really happy that I don't know exactly what that means.  If we were close to losing him, I don't want to know.  I care about what is here and now.  No looking back, only looking forward.  Onward and upward.

Home is good.  Home is very good.  We are all getting back into the swing of things.  We are keeping everyone home for the most part to keep the germs away, but that's OK.  We sat on the couch and watched the New York fireworks with flair.  We kicked back with a beer, belted out Neil Diamond, whistled our respective band parts to Stars and Stripes and enjoyed being home with the boys.  Both boys.  Happy and healthy.

We have some recovery ahead of us.  We go back to the pediatrician and cardiologist in the next two weeks, but this should be it. Heart fixed.  Crying baby at the moment so I need to jet, but it's a very good sound to hear.  Even the screams are something to cherish.  Way to go Super Logan!

Eat, Sleep, Poop

It really is like watching paint dry, being in the hospital.  Eat, sleep, poop, wait.  Later, rinse repeat.

We were promptely kicked out of the CICU on Saturday and the change was incredible.  One day we were in the ICU, poor Logan had so many tubes in him that he had his arms teathered to the bed to keep him from tearing anything out.  By Saturday afternoon everything had been removed and that list included - his nasal canula of oxygen, catheder, 3 chest drains, a line in his corated artery, and two lines in his wrist.  The only things that remained were the feeding tube, pace maker leads and his monitoring devices, which all were there just in case.

We went from not even being able to hold him, to being almost 100% on our own.  Within hours we were changing his diapers, breastfeeding and putting him into regular clothes.  Nurses were coming to check on him every 4 hours instead of every single hour.  The change was amazing.  How he could be that good to go just 48 hours after surgery rather amazed me, but he's been doing great!

We've really enjoyed watching his personality come back.  Each day brings along more smiles and even a few giggles.  Yesterday they pulled out the pacer wires and the feeding tube.  We had a chest x-ray, EKG and echo.  Now we wait.  And wait.  We literally watch him sleep.  I think the only thing keeping us here is weight gain.  He lost a few grams the first night in the cardiac step down unit and he did gain some back yesterday, but we aren't sure if it's enough.  Everything else is good to go.  It is the one and only thing keeping us here.  Sigh.

We are holding up, but are a bit fragile at this point.  I'm pretty sure I almost killed Andrew this morning because he got to go sleep in a nice comfy bed with our host family, complete with clean clothes and a shower, while I spent the night with our new  roommate.  He accidentally took my pjs home with him and then returned this morning having lost my one clean shirt.  I am currently wearing the shirt that I wore a few days ago that was wadded into a ball in a bag and the pants that Logan threw up on two days ago because I have no other pants with me.  Home seems so very close, yet so very far away.

While boring, our stay on 7W has brought on some more fabulous nurses that I wish I could be friends with in real life.  We have also discovered a few new restraunts and officially never want to have to eat at Applebees ever again.  We miss Jake terribly and absolutely cannot wait to go home.  We are waiting on doctors to round and give us the scoop and you can bet we'll fight our case to get out of here ASAP!!

CICU, Day 1

I am writing this at 11 pm while sitting in the CICU, so please forgive me if things are either incoherent or sappy as I am both wired and exhaused.

We made it through surgery!!  I can't even begin to tell you how relieved we were when we got the call that he was all done and that things went really well.  He had a few tough moments coming off of bypass, but he kicked it into gear and sailed on through.  They found that the two holes were each about 1 cm across, which to me seems huge compared to the size of his heart.  Closing them up should do quite a bit to increase the efficiency of his heart and he should start growing like a weed!

It seemed like such a long wait until we could see him again, but it was such a relief to see my baby!  We were quite afraid of what he would look like immediately after surgery, but you know it wasn't too bad!  He looked like sleeping Logan.  He was a little puffy, and the ventilator didn't look great, but he looked like Logan.  Nothing much happened the rest of that day.  We sat and watched and made sure he was stable.  Boring is good.

Today was a big step forward.  After all of the watching and weaning him off of things they started to let him wake up and took out the ventillator.  The vent wasn't breathing for him, it was just helping him and taking some stress off of him.  They got it out and he continued to do fabulous.  They were able to wean him off of most of his medications which was great.  It took a good portion of the day to get them out of his system, but hour by hour we saw more and more of our son return.  Even while sedated he was kicking his legs around like usual.  It absolutely broke my heart though the first time he opened his eyes and really took a good look at me.  A real focus and a small twich of his face that said, "MOM!"

It was so fabulous just to look at him, even if I couldn't hold him.  We could hold his hand and stroke his head, which is more than enough.

He did have some struggles through the day.  He seems to be quite congested.  We think it is his body reacting to being off a lot of the medications and he just needs to get everything out and equillabrate a bit.  He is also having a hard time coughing to get things out though which is making him really mad.  He's mad so he cries, but his throat hurts so when he cries he gets even more upset.  It's a vicious cycle so we are doing our best to keep him calm. 

 I can't tell you how much it kills me to see him clearly in pain and not being able to do more than stroke his head.  He's tired and I just know that if I could pick him up I could hold him just where he wants to be and bounce him right off to sleep, but the poor kid can't move.  He's got one arm taped down to a board to hold all of his lines in place, he has a tube down his nose, a wire coming out of his neck.  I'd be sad too.  

So that's been tough, but hopefully if he can keep his blood pressures under control tonight, some of that stuff can start coming out tomorrow and we can hold him again.  He needs some good mama snuggles.  

So we wait and watch some more tomorrow.  They did tell us that the CICU is completely full and if one more case comes in Logan will actually be bumped to a step down unit since he is the healthiest of the bunch.  Crazy hey?  It really makes you appreciate how healthy he actually is.  It also makes your heart break for the other 11 families on the floor.

So that's it for now, we wait and watch.  Everyone is really pleased with the progress he made today so good news all around.

Surgery Update

Well, we are thus far almost 5.5 hours into surgery.  Well, not into surgery but since we arrived at least.

We got in at 6:15 this morning.  It was a tough, tough  night.  I literally laid with Logan on our bed and smelled his hair for a good half hour just so that I wouldn't forget what he smelled like.  There were lots of tears, lots of snuggles, lots of hugs and pep talks.

By far the hardest thing so far was saying good bye.  They took us back to our pre op room and a bunch of nurses came in and out to get him ready.  Check his vitals, change him into a gown, get his bracelet on.  And my little rock star was just happy as can be, giving smiles out to everyone that came in.  I would pick him up and he'd start smacking away for food, but never got mad that I wouldn't feed him.  He would lie there all cute and cuddly looking up at me with these big innocent eyes and just smile.  It was a "Don't worry Mom, trust me" kind of smile.  You can lock eyes with him and feel safe and torn in two all at the same time.  My heart literally ached for him.  Sheer terror sets in.  It's not healthy to think that this is the last time you might see him, but I'm here to tell you that it goes through your head.  Big time.  You want one last kiss, one last snuggle, one last smile.

It really is the toughest thing I have ever done in my life.

Since then though we've been doing really well.  They took Logan back around 7:30 and have been updating us throughout the morning.  So far so good.  He is currently on the bypass machine and has one hole fixed. An hour ago they were starting the repair on the second and larger hole.  Once those are complete they'll check to make sure everything looks OK, take him off of bypass and stitch him back up.  We think we should be able to see him again in the next few hours.  

We are by no means out of the woods yet, but it's a relief to know that things are going as planned.  No surprises, nothing unscheduled.  That's the way you want it at the hospital.  Boring is good.  

I'll try to update later tonight with a full run down on how he is doing.  Many thanks to everyone for the hugs and prayers!  We absolutely could not do this without the support of our family, friends and entire community. 

The night before open heart surgery

It's been a bit of a long week for the Mays clan.  Surgery was scheduled for yesterday.  Andrew and I tried to get as much packed into the weekend as we humanly could.  2 trips to the pool, ice cream, fabulous dinners, friends, family, and work of course.  I have had the pleasure of working with some wonderful women on their upcoming July weddings and they all really deserve a shout out for pulling things together on such short notice so I could finish before we left.   Sunday night was pretty terrible.  Saying good night to Jake and knowing that we wouldn't see him for at least a week, but him not having any idea that he would wake up tomorrow without his parents or his favorite baby.  We read extra stories and tried in vain to get extra kisses and hugs.  I may not have gotten any extra kisses but when I started crying Jake got very concerned, toddled over, said "Mommy, tears? Mommy, sad?" as he leaned over and touched every tear that fell.  He really is so sweet. It was a tough night.  I was lying in bed and I couldn't decide if I really wanted to go and be done with it, or scoop up Logan and run as far as I could in the other direction.  I know that he needs the surgery, but you see those sweet innocent smiles and he has no idea that within a day he'll be on a ventilator, and heavily sedated while his heart repairs after surgery.   I know it's much harder for me than it will be for him.  I am as prepared as I can be but just the thought of what he will go through and the minute that I have to hand him over and trust in God is enough to rip you apart.   Well, so we went through all of that and were all but in the car and on the road when we got the call from SLCH that there was a child that was more sick than Logan and we were getting bumped.  Surgery on Thursday, not Tuesday.  It was such an emotional let down.   It actually ended up being rather fabulous.  All of our work was done so we got an extra 2 days to snuggle and enjoy the boys, worry free.  I spent most of Monday snoozing on the couch with Logan snuggled on my chest.   It was wonderful and it actually made leaving this morning that much easier.  There were only a few tears saying good night to Jake last night and I am much more ready to go.  In a few days we'll be on the upswing of tihngs. Today we made it down to St. Louis and through all of our appointments.  Logan had another echo, EKG, chest x-ray and blood work done all before we met with both the anesthesiologist and the cardiothoracic surgeon. I felt like it was all so much to take in, but I really didn't learn anything new. I know the risks. I know that the chances that something will go very wrong are less than 1%. The ASD is so small that they will just sew it right up. The VSD however is a bit larger and will need a patch. He'll come out of surgery and need to be on a ventilator for about a day. He'll spend a few days in the cardiac ICU and then a few more days in the cardiac step down unit. If all goes swimmingly we'll be out of here in 5-7 days. None of this is new to me, but I am still terrified. That's OK. I should be scared. I am as prepared as I can be. I want to look at him and say that he looks perfect and we don't need surgery, but to be honest I think I'm just as scared of what happens if we don't fix his ticker. So get keep the warm thoughts and prayers coming, we'll need them! Surgery is on for 6 am on Thursday. He should be safely and happily in recovery by lunch time. I will try to post short updates here and there as I can. The official updates will probably come from my husband on the Caring Bridge site. Mine will be the more sappy arrangements :) Thanks for thinking of us!!

‘Twas Weekend Before Surgery

So here we are.  3 days before surgery.

How do we feel?  We actually feel pretty good about it.  The day we found out about surgery was tough. We always knew it was there looming – the big old elephant in the room – but it was never truly there.  The discussions we had with our cardiologist at previous appointments had been more in the context of months or years from now we would have to face it, so when all of a sudden surgery was scheduled for just 2 weeks away it came with some amount of shock value.

We (and by we I really mean I because A has been very calm and collected throughout) went through all of the sad stuff first.  “He’s just so little!” They will literally be taking my little 10 lb baby, cracking through his sternum, stopping his heart and putting his little body on bypass, sewing up these tiny little holes, getting his heart beating again and sewing him back up.  He’ll be on a ventilator for awhile when he comes back to us.  He’ll have a temporary external pace maker just in case.  It’s scary stuff.  No joke.

We’ve managed to move past all of that though and focus on the positive.  Once it’s done, we are done.  It’s only uphill from here and we can stop worrying about heart failure.  It’s he’s sweating, he’s hot – his heart isn’t failing him.  I’m guessing that Tuesday and Wednesday will be some of the worst days we’ve ever experienced, but it’s healing after that – baring there aren’t any complications of course. 

We’ve talked to countless people that have said this is a life changing surgery.  He’ll be more alert. He’ll gain more weight.  He’ll be stronger.  He’ll be able to play more.  He may be a completely different baby – but hopefully still one that wants to snuggle and sleep through the night!

There is still quite a bit we don’t know yet and won’t know until we talk to the surgeon, but we are OK with that.  We’ve seen pictures of what he will look like just after surgery and have talked to friends that have had this and other surgeries on what to expect so it isn’t so much of a shock.  We’ve successfully gone from scared to rock star mode.  You just have to do it.  There isn’t a choice and staying strong will help Logan stay tuff.  I’ll probably be a complete mess during surgery and it may last until I can pick him up into my arms again, but who wouldn’t be a mess?

It seems like this week has just flown by.  Andrew said it best when he said you have to spend the week preparing for a weeklong vacation – getting the house ready, finishing work, etc. – but with absolutely no benefit of vacation.  He’s almost got all of his ducks in a row at the office.  I am finishing up the last bits of orders for my July brides.  My mom is arriving this afternoon to watch Jake.  Fr. Leo is set to give Logan a blessing after mass tonight.  All we have to do is enjoy the weekend with the boys.  Make our last weekend out in the world a great one! 

Once we are in St. Louis we are going to try to do frequent updates on our Caring Bridge site to keep everyone up to date.  I may try to blog a bit if I can, but Caring Bridge will probably be our main source of information. If you’d like to follow along, just check out Logan’s page.  You can actually set up your account to receive text messages, emails or notifications on a mobile app to get updates as soon as we post them.

Thank you for your continued prayers!!

Get the Prayers Rolling!

Since we’ve been home with Logan, life has been rather ordinary – which is a fabulous thing by the way!  We have been meeting with both physical and occupational therapists 4 days a week and recently down to 2 days a week.   Thus far Logan is showing absolutely no delays and is even a little ahead of the curve when compared to a typical child.  We couldn’t be more thrilled!  When they say early intervention, they really mean early.  We actually had therapists coming over from the day he got home.  The more we can help him now, the better!

We’ve also had our standard monthly well baby visits with our pediatrician as well as our first visit to the Down syndrome clinic at St. Louis Children’s Hospital (SLCH).  So far so good!  He’s small, but growing well and not showing any sings of distress.  He even passed his one hour hearing test, so things are looking good.

We’ve also been meeting with the cardiologist on a monthly basis to watch over his heart.  At our first appointment we were really surprised to find out that the PDA had indeed closed and it didn’t narrow his aorta any more than it already had been and they no longer considered that a problem!  His aorta is a touch more narrow than it should be, but it’s not a dangerous thing and he should be just fine. 

I know that I should probably post more on that, but events changed a little bit today and I wanted to get you up to speed. We had been hoping that the remaining two holes (the ASD and VSD) would close on their own as he grew.  As a newborn the pressure in his lungs and heart were about equal, which is normal.  Once you reach about 2-3 months of age those pressures start to change.  We had an echo today that confirmed that and unfortunately it didn’t show the exact results that we wanted to see.

Right now, the pressure in the right side of Logan’s heart is a little high which is causing the pressure in his lungs to elevate a bit.  It’s fine for now.  He’s not in heart failure and isn’t in any real danger, but if we don’t fix it, there could be some long term damage that we won’t be able to repair. 

What’s the fix? Open heart surgery to repair the ASD and VSD.  Right.  They are going to take my little 9 lb (hopefully 10 or 11 lbs by then) baby, crack his chest open and sew up the holes in his tiny little heart.  Whew.

The good news is that he is growing well and is considered big enough to safely handle the surgery and once he’s had it it’s done.  The holes will be fixed and they should never be a problem again. He will continue to grow and thrive and become a happy and healthy toddler before we know it. 

The bad news is, they are cracking my baby’s chest open.  Small baby.  Big hole.  Nervous mommy.

He should be just fine though.  There’s about a 95-97% success rate and there are few complications to worry about.  He is also having surgery in the cardiac unit that is ranked #13th in the country, which really puts us at ease.

No surgery date has been set quite yet, but we are expecting it to be some time in early to mid July. Please keep our little man in your thoughts and prayers while we prepare for our next mini vacation to St. Louis.  We are grateful that at least this time around we can plan ahead to find a place to stay and find a way to keep our family together in the same city so that we aren’t all so far apart again.

Instagram Monday

What do you need to start the week off right?  How about Instagram Monday?  Assuming I remember ... each Monday you'll get to see a snippet of what's going on in my life.  It might be those cutie boys of mine, food we are eating, projects that I'm working on or just life in general.  Comments are welcome and appreciated!

Dreams Change, but that’s OK!

When you stay in the NICU for a week, you have a lot of time to think.  Not much happens.  You don’t have a permanent place to be other than at your child’s bedside.  You watch him sleep, you change a diaper, you nurse him, you watch the monitors beep away.  Day … after day … after day.  You don’t want to leave him to do anything else and you really don’t enjoy it when you do try to go out and do something fun. 

{For the record we did get out to go shopping a bit for things we left behind and I did get one really fat piece of cheesecake at the Cheesecake Factory a few days after my birthday – it was wonderful!}

So you think.

I think all of that thinking time really helped us to get through the shock of what was happening rather quickly. It’s just part of who we are. To us, there is no sense in dwelling on the things you can’t change. It’s not helping anyone. Dwelling only makes you sad and you just have to pick yourself up and move forward and figure out  a new plan.  Enjoy these newborn days before they are all gone.  When else would I ever have the opportunity to sit in a rocking chair with my snuggly little man for hours and hours on end without any other responsibility?

One thing that I’ve read over and over on all of the Down syndrome information is that you do need to grieve. It’s OK.  It’s more than OK. You do have a loss. You have lost the child that was in your dreams. The one who is (against all genetic odds) going to be captain of the football team, top of his class at Harvard, and a musical genius, all while getting both a law degree and an MD. I know it’s irrational, but you dream that your child will have the world.

It takes time and a lot of thinking.  When you first hear the news you are looking at this child wondering who he is.  He isn’t the child you thought you’d have!  He doesn’t look like you expected, he doesn’t act like you expected, and he certainly doesn’t have the future you clearly had dictated for him, but maybe that’s a good thing.  Let God shake it up a little.  Think outside the box of what’s “normal”. 

It was hard to look at Logan in those first few days and not burst into tears.  He was so cute, and so innocent and it all seemed so unfair.  This little child did nothing but snuggle, but was in for a much tougher life than we expected.  Maybe that’s the best way to describe the biggest emotion you go through.  It’s just not fair.  He didn’t deserve to have challenges before he even had a chance to live.

But then something changes.  Then you are nursing him one day and he opens those big blue eyes and locks them with yours.  He looks up with this innocent look that says “Mom, I’m OK!  I’m right where I need to be!” He doesn’t know that he’s different!  He’s Logan.  Just Logan.  It’s the rest of us that are prepared to treat him like he’s anything other than typical.  He’ll have dreams.  He will want to play sports.  He’ll chase the dog around just as much as Jake does (poor Luke – the dog has no idea he is such a great source of entertainment!). 

He was the one that told me things were going to be OK.  All we needed to do was love him. 

So it’s OK to change your dreams.  If everyone had the same dreams, where would the diversity in life be? 

{I know this is a picture of Jake, but it’s just too cute not to share!}

The Face of Down Syndrome

So you think you know what Down Syndrome looks like right?  You know the face.  You can easily pick out a child with DS.  It may look a lot different than you expect. 



Welcome to our family Little Man. 
You can see more photos from our photo shoot with Jennifer Lee Photographee.

Let's change the way the world views Down Syndrome!  If you have a loved one with DS and have a photo, post the link to the photo in the comments section below!