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!

Logan’s Story–Our Stay in the NICU

Sorry to leave you hanging for awhile on the rest of Logan’s story!  We’ve been doing things like this:

For more photos follow me on Instagram – user name invitedbylamaworks!

So after Logan’s makeshift baptism in the nursery, things kicked into high gear.  By about 7 pm the air evac team had flown from St. Louis up to Quincy and was ready to make the transfer.  They had a big stretcher full of equipment an a tiny little incubator for our little man.  We held on to him until we absolutely had to let go.  We gave him as many hugs and kisses as we humanly could before we packed him in.  By this point he had blood oxygen monitors on both arms and legs and also had an IV coming out of the top of his head.  It’s pretty safe to say that I’ve never been so terrified in my life as I was at that moment.  The flight for life team was fantastic though and promised to call us the moment they got Logan into the NICU.

It was also shift change time again so all of the nurses that we had that morning when I came in for delivery were there as well as all of the ones we got to know throughout the day.  Everyone stopped what they were doing and we all watched as they wheeled our little man out the door and off to his private jet.  We got hugs from every nurse and they all jumped into action to get us out of the hospital.  I needed to pack up what few things I had unpacked in my room, sign a bunch of papers, and make sure I had all of the necessary instructions to take care of me – oh yeah … I had a baby 11 hours ago??  Right, take an ibuprofen … I would need that.  We finally made it out and it seemed so unfair to be taking that big wheelchair ride down to your car with nothing in your arms except for bags of newborn clothes you hadn’t even gotten to unpack yet. 

We rushed home, unpacked, repacked and were on the road to St. Louis by about 8:30.  I was trying so hard to keep it together but I did take the time to call a few friends to let them know that we needed their prayers ASAP.  It also didn’t take long to have the first really major meltdown of the day.  There were tears before, but you really let go of things when you find yourself sitting alone in your closet not understanding why you are unpacking your hospital bag for a new one and not knowing what you need or how long you will be gone.  All I could think about was how unfair this all was.  You have an image in your head of what it’s like to have a baby and welcome him into your family.  This definitely wasn’t it.  He hadn’t even really met his brother yet.  We hadn’t changed a diaper. We didn’t get to snuggle in bed while we watched the Sweet 16 unfold.  Yes, we had completely forgotten that the NCAA tournament even existed at this point.  Its funny how something that at one point was going to be a big part of the day, just melted away.

There were tearful hugs to our family and of course to Jake.  What do you say to you 19 month old son when you aren’t sure when you are going to see him again?  You give him the biggest hugs you can until he squirms right out of your arms.

Logan made it to St. Louis well before we did.  We tried to nap on the way down, but that just didn’t happen for me.  We finally got to the NICU by about 11 and waited around for almost an hour before we were allowed to see him.  On an ironic note we did get to watch the remaining minute of the Marquette game while I pumped in the lactation room. Nothing had changed with Logan, so that was a good thing.  They were going to spend the night running tests and watching him carefully and insisted we get some sleep.  Since I had gone into labor 24 hours ago, it had been a full 48 hours since the last time I went to bed.  We couldn’t hold him since he was going through so much, so bed was a wonderful idea.  They had a spare room for parents that find themselves in the NICU with no place to sleep so thankfully we got a full night of sleep and it was wonderful.

Everything moved so quickly and then all of a sudden we all just stared at Logan 24/7 and watched and waited.  Friday – no changes.

 

Saturday – no changes, but one of the best days ever!  Jake came to visit with my parents and some family friends.  We were so grateful that they could find a way to bring him down.   I’ll never forget this big smile, “Mommy!!!!” and these little toddler legs running toward me and jumping into my arms.  We missed him so much!!  Unfortunately Jake was too little to be allowed back in the NICU, but we got to spend a few very precious hours with him up in the roof top garden and I gave that boy every hug I could!

Sunday – another echo – still no changes.  Sunday I was a bit of a wreck.  You see, Sunday was my 31st birthday.  Logan and I had a lot of talks while I was pregnant, more so as my due date got closer.  Aside from the basketball negotiations, I also told him that I wanted to be out of the hospital and happily back home by my birthday so we could celebrate.  We would have a fancy dinner.  There would be a big cake.  Presents.  Flowers. And of course some good old NCAA basketball.  We definitely were a far cry from that.  We were very alone and scared in the NICU.  There were no presents, no candles, not even a cupcake.  To make matters even worse we spent the entire day watching the family across the hall celebrate that they were going home.  I know that we had nothing to complain about compared to many of the families there, but it just seemed so unfair.  We also knew that the results of the chromosome study were due for a Monday delivery and we spent half the day reassuring ourselves that if it came back positive that we were OK with that and the rest of the day convincing ourselves that they were wrong because he just doesn’t look any different than a normal baby.  I was a very pouty birthday girl.

I know I don’t look pouty in that picture, but that was my official happy birthday picture!

Monday was a great – we got results back from his latest echo that showed no significant changes.  His PDA was starting to close but that didn’t change his blood flow at all.  His blood pressure still looked great and equal from his arms to his legs, his color was still great and he wasn’t having any dips in his blood oxygen levels.  Logan also decided he wanted to breastfeed that day.  He’s a very willful child.  The Dr. says we are being induced, he comes on his own.  A lactation consultant comes in and says that if he does have Down Syndrome, chances are that he may struggle with breastfeeding.  Boom- breastfeeding champ!  It was just one feeding and he was too pooped out for the others, but it was a start!. 

Life was good until they came in with those chromosome results. Logan has Down Syndrome. I thought we were mostly cried out by this point, but the tears silently fell anyway. We knew it was OK, but we still needed to grieve. Looking back now, the thoughts that go through your head just seem crazy. I judged myself then, but it’s normal to grieve. You’re sad that he won’t be successful. He won’t get married. He won’t go to college. He won’t have kids. Growing up he’ll look and talk funny and kids will make fun of him. Kids might make fun of Jake for having a brother with disabilities. You just don’t want to deal with it. You even wonder why you wasted such a perfect name on a child who is so less than perfect. You don’t wan to deal with special ed, homework challenges, behavior problems. You want your child to grow and gain independence so you jump forward 20 or 30 years and wonder if he’ll ever live independently and then dread the thought that you might be actively taking care of this child forever. Then you go one step further and you realize that when you aren’t here some day, he might be a burden for your other son to bear. Trust me, you want to turn and run the other direction and fast.

It takes time, and you need time to work through all of the muck before you raise your head up and say “Are you stupid? He is none of those things! He will, and you all will be just fine!!!” You slap yourself upside the head and move forward. You have to. He’s a baby and he needs you. Nothing in his future is set in stone. Things have changed so much in the last 20 years and many kids born with Down Syndrome go on to live happy and independent lives.  His dreams may be different than Jake’s but they are no less valid and we will help him to reach every goal that he has.  He will be happy.  He will play.  He will have hobbies.  He will go to school.  Some day he may even have a job and live independently.  You have no idea who he will be, just the same as any other child. You don’t know what physical or mental ailments he’ll have – just like any other child. So enjoy your baby!! Cuddle. Hug him. Kiss him. Play with those cute little toes. He is perfect. He is the child that God wanted us to have and we are the parents He knew that Logan needed. We are a family no matter what. For better or for worse right?

So that is just what we did. We dusted ourselves off and moved forward. Nothing would change. We have loved him since the moment we knew he existed. He has Down Syndrome. It’s not something you can fix or change. It is what it is, and we will do everything in our power to help him through life, just like we will for Jake. You can guide him and put him in the best possible situation to succeed in life – just like you would with any other child. Let him grow and show you what he needs.

 

Were we scared? Absolutely. Did we wish it were any different? Oddly, no. He wouldn’t be Logan without all of these things. It won’t be easy, but life is boring when things are too easy. I had an epiphany a few days later.  I struggle sometimes being a work at home mom.  I spent 7 years working towards a bachelors and masters degree in biomedical engineering.  It was hard.  Really hard.  I worked for 3 years after that and now I spend my time singing songs, cleaning and changing diapers.  It’s a tough adjustment.  But, this very moment is what God was gearing me up for.  I studied designs for health care professionals with disabilities.  I helped design policies so that people with disabilities had an easier time in the work place.  I spent 3 years working with children of all ability levels.  I saw their spirit and their challenges.  I fell head over heels in love with those kids.  Little did I know, one of them would be mine one day.  God has a plan.  He always has a plan. 

Throughout all of this we were really struggling with how best to feed Logan. He was on just fluids for the first day until it was decided that he didn’t need surgery right then and there. Then we started weaning him off of that and tried breast milk. He wasn’t exactly getting the hang of breastfeeding so he was having very small amounts through a syringe. The heart defect made him extra sleepy and he wore out easily so it was really hard to keep him awake long enough to even try to eat. Eventually he ripped the IV right out of his head, so we switched him over to a feeding tube.

One of the nights that we couldn’t stay at the hospital we decided to start bottles. I didn’t care how he got his food as long as he got it and a bottle wasn’t breastfeeding, but it sure was a step up from a feeding tube in his nose. One night he decided to take a full meal by bottle and we never turned back. You know what that meant? We could take out the feeding tube! He did one entire day on bottles and breastfeeding and proved that he could do it and even gain a bit of weight. One more wire off of him – one more step closer to going home!  It took us a full week to get him into full breastfeeding mode, but he did it and is now way more successful than his brother ever was!

The rest of our stay in the NICU was fairly uneventful. Echo after echo showed no changes in his heart. Day by day they started disconnecting one monitor or another and by Thursday our Doctor said the glorious words, “So when would you like to go home?” Yes please!!! That was one thing that surprised me the most. They asked us if we were ready. Everything was very patient family centered. They asked us how we wanted to feed him. If we felt like he ate enough. How we wanted to make medical decisions. We are so used to having doctors telling us what is best, we always seemed to question our own intuition. Like with feeding. Of course he isn’t waking up to feed, you give him a set amount of food every 3 hours on the dot. If we stop doing that, won’t he learn that he has to wake up to eat? Sure enough – he did!

So Thursday – 1 week old. That was a good day. Our families came back down and we got to spend another day with Jake. We got to tell our families the news in person and, boy did it feel good! The only things standing between us and home were a car seat test, CPR class and a few “going home” videos. Amen!!!

So, we did it! 8 days after Logan was born – we finally got to go home! He still had 3 holes in his heart. He still had Down Syndrome, but we were going HOME. Home!!!! We spent all day Friday getting him and us ready to go. The first time he was wire free, I danced around the room! We spun in circles, did a little jig and then proceeded to walk down the hall to visit one of his nurses that was in another wing that day.

We knew we weren’t out of the woods yet and we still had a lot of cardiac issues to deal with, but it felt so gloriously good to go home. Little Man finally got to meet his big brother and we could welcome him into our home like we had planned on a week earlier.

Life is good.

Logan’s Story–Part 2

So where were we?  Logan went to the nursery, I went to my room … Fair warning that there may be a few tear educing moments in this post …

By about noon we were starting to get a little worried about Logan, but still just enjoyed the day.  We assumed they were waiting for our pediatrician to check him out as she was going to come over her lunch break.  We also knew there was a gaggle of nursing students in there so maybe they were all taking turns checking out his vitals.  Great to learn, bring my baby back to me please. 

We finally pestered a nurse to find out what the hold up was.  One of the nursery nurses came in to explain that they were waiting for our pediatrician.  One of the other nurses thought she heard a small heart murmur.  There seemed to be some confusion because not every nurse heard it and it hadn’t been heard on his initial exam right after birth so they were waiting for the doctor to come in, she was on her way and we would know more soon.

We didn’t want to worry our family so we kind of made up some excuses as to where he was and told them to go have lunch and come back later.  We kicked back, a bit concerned by now, but still happy enough to eat some lunch.  Jimmy John’s!  The first thing I wanted was a good old Beach Club. 9 months of not eating deli meat that hadn’t been microwaved makes you just crave a good deli sandwich sometimes!

One thing I will never forget about that day is our wonderful pediatrician walking into our room while we were eating lunch.  She came with a nurse and a textbook and had tears in her eyes.  I knew instantly that it wasn’t good news.  Andrew knew as well and just sat on the bed with me and squeezed my hand.  In those minutes that passed I didn’t really comprehend everything but she said that she did hear a hear a heart murmur and vaguely explained what that might mean.  She also took a deep breath and said, “There are also some signs that we feel that Logan may have Down Syndrome.”  I'm pretty sure in the 2 minutes she spoke to us the world stopped.  Just completely stopped.  Tears ran down my cheeks like a faucet and I hung on to Andrew like my life line. 

Nothing of course was certain.  They had already talked to the pediatric cardiologist and he had ordered an echo to see what was causing the murmur.  They had already sent lab work away to test for Down Syndrome, but it wouldn’t be back for days.  She said that he had slightly upturned eyes, a slight curve to his pinky finger, a slightly larger gap between his 1st and 2nd toes.  It was subtle, but combined with the presence of a heart defect, it was a possibility.  The good news of the conversation was that of all things – there seemed to be nothing wrong with his bowels!  The one thing that was the catalyst to labor wasn’t even a problem at all. 

We tried our best not to panic and just wanted to hold him.  We couldn’t take him out of the nursery and he was already hooked up to all sorts of machines monitoring his heart.  The nurses were all so fabulous and really encouraged us to cuddle skin to skin.  I sat on that hard as a rock chair and rocked my little baby and just cried, completely oblivious to how much physical pain I might be in. 

I remember just sitting there and staring.  Staring and rocking.  Rocking and staring and just silently crying.  he looked so perfect.  He looked like a perfect, tiny little baby.  I was trying to convince myself that it was all just a big mistake.  They would do the echo and realize that everything was fine. 

It was such a relief though to have some answers and to have him back in our arms.  He was so snuggly and wow, did he have hair!!  He had (and still does have) this fuzzy, poufy hair that just sticks straight up all over the place.  I loved it!  I kissed it and kissed it and held on as tightly as I could.  I wanted to protect him from everything and make it all go away. 

By this point our parents were back from lunch and we couldn’t really hide anything anymore.  We still only told them vague details – partially because we really didn’t know much more than that.  We told them they thought there may be something wrong with his heart and were running tests.  There was no mention of Down Syndrome to them.  Why?  We knew it would be hard.  DS wasn’t something that could be “fixed”.  A heart you can fix.  You can save someone with a heart defect.  Nothing would change if he had DS.  It is what it is. We knew that a diagnosis of DS in their generation meant someone who had a grim future and was institutionalized.    We were pretty sure that wasn’t what it means today, but one problem at a time right?

One of the most touching aspects of the day happened during all of the tests.  I was missing out on all of this bonding time with Logan.  All of those first moments where he learns my smell and my touch, lies on my chest listing to my heart beat with his.  One of the nurses came in with a small piece of flannel and told me to put it under my shirt.  He needed to bond with me and if I couldn’t spend my day cuddling away and chatting with visitors, he would cuddle with a piece of cloth that smelled like me.  It turns out that he had one with him too.  Every few hours we would switch.  We would always be together.  I could still be with him and be a comfort to him even as he was going through all of these tests.  It works both ways though too.  He was there to comfort me, because we both needed each other.  Are you crying?? I am, that’s for sure and I’ve been sitting with it for 2 months now!

I also wasn’t allowed to nurse him at all in case he needed heart surgery. Let me tell you, a breast pump while you are babyless is awful, especially when one of the nurses brings you photographs they had just taken of Logan to help stimulate your milk producing hormones. Stare at the pictures of your sick baby while you are hooked up to a cold machine yanking away at you. In theory it was supposed to help my milk come in, but all it really did was make me cry even more.

Around dinner time our pediatrician came back.  We left Logan with our parents in the nursery and went to another room to speak with her alone.  It wasn’t good news.  The details were very much a blur then, but she came to tell us that the echo confirmed that Logan had a heart defect.  He had 3 separate issues – a PDA, VSD and ASD. 

The most critical problem was the PDA – Patent Ductus Arteriosus.  In English??  Before babies are born they have a tiny blood vessel that connects the aorta to the pulmonary artery.  In most babies this closes off within minutes or hours of birth.  If it stays open the blood full of oxygen mixes with the blood void of oxygen and it causes stress on the heart.  Now they expected this to close at some point and not be a problem, however he had along with that a coarctation or narrowing of his aorta.  The location of this narrowing point was quite close to the PDA so they were afraid that as the PDA closed it may make the narrowing even more severe.  Major problem.

The other two problems?  Ventricular Septal Defect (VSD) and Atrial Septal Defect (ASD).  These were two small holes between the two lower and two upper chambers of the heart respectively.  Not an immediate problem, but could be in the future if they don’t close on their own.

OK, so now what?  Unfortunately we live in a smaller town and our hospital was not equipped for this type of scenario.  That meant that a flight team was on the way from St. Louis Children’s Hospital and would be there within an hour to transfer him to the NICU there.  He was not in an emergent need for care, but there was a chance that might change as his PDA started to close and he needed to be monitored carefully.

She also again mentioned the DS and how about 50% of babies born with DS also have these types of heart defects, but we didn’t really hear that part. Down Syndrome?  Whatever.  I don’t care. Put my baby's heart back together.  Make him whole.  Make sure he lives.

We were a hot mess by this point and were so incredibly thankful that our pediatrician offered to explain what was happening to our family, DS and all.  There were lots of shocked faces.  Tears.  A few questions.  Lots of hugs.  Our parents were all sitting in various chairs taking turns with Logan.  Andrew and I stood in the center and just clung to each other and cried.  And cried.  And cried even more. 

Over the next hour, I am still impressed at everything that happened.  My parents immediately said they were staying in town until we were back home, no questions asked.  Andrew’s parents were going to drive us to St. Louis after the plane took Logan – no ifs ands or buts.  By some miracle, even before all the drama started, I was in very little pain and my OB discharged me over the phone without ever seeing me again after I delivered.  Yep.  about 9 hours after I delivered a baby, just 12 hours after I arrived,  I was (thankfully) discharged.  Logan – I thank you for being a fast and easy delivery!

One thing I will never forget is that Andrew’s mom asked if our parish priest could come and pray with us.  At the time I thought, “Oh, how nice.  That would be lovely. The prayer of the sick.  He really needs this.  Let’s do it.”  But when Fr. Leo got there,  reality really sunk in.  Yes, he was there to pray for him and heal him, but he also came prepared to baptize him.  He came in with a solo cup of water and a sea shell and in the name of God, we baptized him.  It was at that moment that I thought I was going to lose it completely.  He was there to baptize him, just in case we didn’t have the opportunity to do so later.  Logan might die.  My perfect little boy that I had been dreaming about for months, might not make it and we were preparing him for eternal life if that was what God had planned on. 

It’s a moment you will never forget.  That sea shell will be with me forever.  I will never forget.