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:

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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.