Hudson's First Surgery

 Hudson had his first surgery on 7/2/13 that week he was intubated. He had a PDA ligation. His PDA was larger than we had anticipated and we were optimistic that this repair would allow us to go home, for Hud  to grow and then come back for his complete repair.

Prior to this surgery we went in for a heart catheterization. This allowed the Dr.'s to get a closer look at what was going on within his heart.. Just like every procedure there are risks, risks that you don't think will happen to you. You would think I learned my lesson by now with everything going on with Hud, but I didn't think anything could happen to him....boy does that kid love to prove me wrong. They go through the Femoral artery during the procedure and there is a possibility of losing the pulse in that leg. Sometimes it will return, other times it does not.  Hudson came back to me with no pulse in his left leg. I was terrified. They would continuously come by, placing their fingers on his ankle..then checking his heartbeat with their stethoscope, trying to find the rhythm just knew Hud wasn't going to get it back, I thought "Great, now they're going to have to chop his leg off too". I was a nervous wreck for hours. A fellow (a Dr. not a guy) Elliot came in and turned on the Doppler (the same as they use while you're pregnant) to check again. "I think I have one"..he looked over at me in the chair, raised his eyebrows and turned up the volume. There it was, that same echo I heard while he was in my womb.. that broken little heart beating away. I put my head down and shielded my eyes with my hand. I let those hours of anxiety empty out. My nurse, Tonya said "it's ok mom, those are happy tears..we will take those". They were indeed some of the happiest tears I have ever cried. Thank God.

The next day after his surgery, Hud was able to tolerate 21% flow. That was a huge deal for us. Finally, he could survive on room air. We had worked for that since birth so we thought for sure we were on the right track. He had gone through a heart cath, and the PDA ligation so there was no way he would not improve....right?? We had been through so much. Hudson was 4 weeks old and it was time for him to start actually living. He has paid his dues, so he can only go up from here. Hud recovered quickly from the surgery and we could have sworn we were on track to going home.

 

 

 

Unfortunately we were wrong and the surgery didn't yield the results we expected. Hud still had to work hard, still hadn't gained enough weight, and was still somewhat struggling to exist.

 

 

They decided that we would try using a cpap mask to give him some extra support. The cannula wasn't giving him enough of a break. He hated the mask, and fought for the whole 2 hours it was on.

 

 That left them no choice but to take it off and replace his cannula. The next day July 5th, only one day after having his breathing tube removed they decided to reintubate. I fought that decision hard.. I ran through all the reasons why and why not to. I was so torn. I didn't think he had enough time without the support to prove himself. I didn't think he needed to have the tube back in so quickly...He didn't have enough time to be a baby, all the sedation and pain killers weren't even out of his system yet. But I agreed, if nothing else but to let his lung tissue catch a break to recover. I could find something positive to hold on to...and I did. Just like I always do. Just like you HAVE to.

 So they reintubated my boy and that's where we stood for 2 weeks.

 

 

Independence Day

  July 4th has so many meanings to all of us. Besides the obvious, this was also Hudson's first holiday. And anyone that knows me, knows that I take my holidays seriously! I wish we could have celebrated differently but we made the best of it. I picked up a little 4th of July bib..sad that I had to sacrifice having him decked out in stars and stripes. Sad that I couldn't see his eyes light up (like what the!!!) as Em lit her sparklers. The holiday I had planned was drastically different. BUT I made sure he celebrated however possible!

  An important day all by itself made extra special because it was also the day Hudson was freed of the ventilator. That terrifying day a week ago finally concluded with a liberating moment for my sweet guy.
 It was something that we had waited for...something that symbolized Hudson was "better". If he didn't have this breathing tube then he wasn't doing so bad. The moment came when they gathered around his bed. I was just beaming with excitement for him, it was radiating out of me. He was ready, I knew he was.


They put his nasal cannula back in his nose, put the air on high flow...and with a few quick movements the tube was pulled out. His eyes watering, his mouth opening and closing...licking his lips, rediscovering that part of his body as he was taking his own breaths unassisted for the first time in a week. I was so proud of my boy. So very proud.

              My little was FREE.

 

 

 until my next post.

 

- one very happy mom

 

 

 

 

Month One

Dear Huddy...my gorgeous bright eyed little man.


  This is not how I anticipated we would be celebrating...I hate that all your time has been spent in a hospital. It makes me sad to state your official address as 2100 Erwin Rd. Durham, NC...because that's not our house. I sit beside your bed all day and think about what it would be like to see you in your crib, instead. I wish we could be at home, in our living room giggling as we watch Em and daddy rough house. I want to be annoyed that she was playing too rough with you, or smile because she did something cute for you. I desperately want that to be the life for you.
   I want to show you the world outside of wires, tape, tubes, medicine, monitors, heel pricks, strangers and pain. I can't wait till the sun light hits your face for the first time...the wind blowing across your cheeks, fresh air and smells other than "hospital" infiltrating your healthy lungs.  I can't wait to show you all of the amazing things you have no idea even exist...everyday I am bursting with anticipation. I am ready for you to be home. I am ready for you to feel safe. I know you are too. I wish there was more I could do for you, this can't be how your life was supposed to play out....this one isn't fair.
   I hope we are able to experience all of those things and more together. You are the bravest one month old I have ever come to know. You have taught me more than I imagined. I am stronger than I give myself credit for, and I know your possibilities are endless. I can see things I never noticed, I can appreciate things I overlooked...and I can understand that of which I am afraid. So as your mother, teacher and student I am in awe of the little man you are already shaping to be. I love you more every day, and I grow prouder of you with every passing minute. You are my perfectly imperfect son. My solace. My fighter. My survivor.


Keep holding on.



Because, I love and need you.
Mom

Happy one month little love.

Holding on to hope

I am positive that there are a few things in life that you can never be prepared for.

Seeing that tiny piece of you on a hospital bed with a machine pumping his lungs full of air, that air I admittedly take for granted all day, every day. Watching his body move and knowing its not being done by him is a strange realization. It takes some getting used to. You don't know what to expect. How much will he move, will he open his eyes, what is our new normal? It took me some time to adjust.. It was totally unreal. I needed a moment to gather my thoughts...We headed down to the lobby, grabbed a coffee and trekked to the parking garage. I opened the hatch to our trunk and just sat there letting it sink in. We didn't talk much, both kind of quietly picked our emotions up off the floor and gave them a good dusting. Pushed the negative out and let the positive settle back in. Out of the hospital room....just outside away from everything as I processed our "new". 

We ran into Hunters dad on the way out. I could tell he already knew what was going on. Our boys were neighbors again..only a sliding glass door to separate us. There isn't much that can happen around here without the other families noticing. As we walked out our eyes met miles before we did..there is something that happens when two scared souls suffering the same pains lock eyes. Its like all your thoughts and fears intertwine and there are hours of conversation had without the need for a single word..the connection in that gaze speaks about a level of pain few have ever experienced. A helpless pain. The pain of a parent that comes as they watch their child tiptoe on the very thin line of life and death. It's an understanding that can only be fathomed by someone in our situation. Truly An unforgettable moment. You share the same horrid life experience and you know the odds are someone has to lose...so when one of us teeters a little closer to stepping over that thin line, you feel sadness for them, not only because you have come to know and care for them but because you know it could easily in an instant be you. I'm sure a sorry and a sigh were exchanged somewhere in there...but there is nothing more memorable than the unspoken.

 We spent the rest of the day with Hud and our nurse Katy. I can't relay the importance of an awesome nurse during these stressful long term hospital stays. She is a complete match to our personalities. She loves to play with our daughter, she laughs at our jokes (probably the most important thing of all) and I'm always able to talk to her whether it be about my emotions, experiences or of course Hudson's medical issues.. Being completely comfortable with the person responsible for keeping your little one alive always makes it easier when you are on your way out for the night. I will always remain thankful for the days we have nurses like that.

When we arrived the next morning we were greeted with a rarely closed curtain in the first room. We entered Huds room and found the glass door joining us to Hunter unusually closed as well. I thought it odd, but sometimes during in room procedures or discussions they will close the partitions.  As I rotated around I caught sight of Hunters monitors. The screens were dark, my heart sank. That sweet boy was waiting for a transplant and no monitors could only mean one thing. His dad sat cradling him in his arms...then getting up to place him back on his bed. Instant grief washed over me. I wanted to run in and see what was going on...ask a million questions...hug them...cry for them. In the same sense I didn't want to intrude, I battled with myself as to what would be the most appropriate approach. I wanted to imagine it wasn't happening only feet away from us. I wanted to pretend the reality away. If I don't believe in it, it can't exist.  I caught glimpses of the hardest moments any parent can imagine play out. He exited the room...I seized the opportunity, stepped out of Huds room and as he was talking "y'all did everything you could" to his Dr. he began to break down. I instantly interrupted the conversation and wrapped my arms around him to comfort...I'd have done anything (seriously, anything) to make them feel better. I whispered "I am so very sorry" squeezed harder.....backed away, grabbed his arm and said the only thing I could offer..."if you need something, please don't hesitate"..I wish there was something more profound that I could have rattled off instead. Regretfully, that is all I had. There really are just no words. Shane and I were in total disbelief for the rest of the week. We still talk about Hunter and I doubt we will ever forget. So, to that sweet faced little man who always knew when to pull off his pulse ox and toss it out of his crib for attention, the soft little voice that always wanted yum yums, the 1 1/2 year old who touched so many lives....rest easy now, sweetheart.
Nothing around here is easy, nothing.

Welcome to Holland

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

Yeah, Holland is pretty beautiful....

Helping Hudson

   I have never been one to ask for help or expect gifts. I do though understand that some of our friends and family want to help and show they love and support us.  This amazing group of friends created this site to allow that opportunity. Well wishes and love are also always accepted! Thinking of our little man is enough for us. Thank you for loving us, and here's to mending Hudson's broken little heart. 

If you want to catch medical updates as they happen (since my blog is a little delayed). Click the link below. 
Help Hudson Here


Without the support of my family, friends and even strangers we wouldn't have made it this far. You keep us going when we emotionally have nothing left. I can never put into words how much this means to us.

Dionna, Shane, Emerson and Hudson

 (that is the first time I've been able to write all of our names together like that)..    :)

 

Just a little sprinkle...

I was iffy about having a baby shower the second time around and made it a point to say no gift was required in the invite. I just wanted to celebrate our boy.  I didn't want people to think I was being rude or whatever other reason it offends..just wanted to make sure no one eye rolled the invitation to my second baby shower!

However, I wanted to make sure I did everything for him that I did for Emerson. I didn't want Hud to become a victim of "Oops you're the second baby so I forgot to take pics of all your first's, whaaat? I had no idea your sister had 200 pictures taken each day of her first year". I myself, am the second child and often find myself scowling at my mother as we look at old albums (just kidding Mom, love ya...mean it!)...



   We had our original baby "sprinkle" planned on 7/1 but of course Hud made his appearance on his own a day before, so needless to say we had to reschedule it. I chose the week after he was born. I wanted to make sure life didn't get in the way and we never got around to it.

 My sister had everything put together already and I also wanted to make sure her efforts weren't for nothing. OK, so hopefully that was enough justification for having my Sprinkle, for those that turn their nose up at them :)


It was gorgeous! I was so thankful to have the most important people there. Just what I wanted it to be. The décor and the food were perfect!


         
           She even made the cake!

 

 

 

 

 

   Blue nail polish favors....what a cute idea, right?

My crazy husband and I, above.

 "Wishes for Hudson" papers to fill out for the Hud man. Those were so much more special to read a week after having him and knowing everything versus if we wrote/read them the week before.
Dear Huddy,

I hope you learn... that being you is amazing.

I hope you aren't afraid of ....spiders, because Mom is going to need you to kill them, and there is a strong possibility you will be required to kill other bugs as well. (Sorry I am not the put them outside kind of lady)

I hope you love.. your life. I hope everyday I will be the mom you need me to be and that you are so incredibly happy.

I hope you have your mothers...wit and love for crafts. I can't wait to joke with you and laugh and I'd be thrilled to share my love of crafting with you :)

I hope you are good at....detecting rain clouds, because your sister will point them out everyday! It'd be nice for some healthy competition!

I hope you have your fathers....smarts and good looks, he's a handsome man and you're already a very handsome little boy. I hope you're able to excel academically as much as you can!

I hope you remember....that you are my hero, the toughest person I've known. You are a fighter and survivor, and that you deserve nothing but the best in life. 

I hope you become....a gentle, caring soul and a reminder to the world of how important it is to love.

You've already changed my life and I hope as other mothers read my blog their child gets an extra moment of attention. A hug or a kiss, a quiet moment when they can exhale as they think about how relieved they are to live a different reality from me. That extra moment of love alone, makes this documentation of my emotions worth it. 

"Bagged"

  Walking into the waiting room to check on my boy's new set up in the PCICU..approaching the window my eyes were drawn just past the front desk clerk and instant fear smacked me in the face. I saw my son on a bed, arms wide to his side, his lifeless little pale body at the mercy of the Dr.'s. A bag being squeezed by (at the moment) the most important hands on the planet. My tiny little boy was being manually ventilated or "bagged". I was horrified and as I gasped the tears began to roll while I asked what was happening. It had been 5 hours since he was taken from me..way too long for a parent to wait without any updates, but we wanted to give them the time they needed.
 The receptionist completely lacking tact and compassion for the situation says "now don't you go doing that" in a tone as if my tears were annoying her. My heart began to thump hard in my chest as I turned my head and roared at her..."lady, that is my son and he is being bagged right in front of me..I NEED TO KNOW WHAT IS GOING ON?!". She got up and said someone would be with me as soon as possible.
  The worst was rolling around in my head, my son had just died...my son is dead...what am I going to do..my boy is gone. A fellow came out and greeted me at the door just moments later. She said Mrs. Moore, I am so sorry you had to see that, Hudson was having a really hard time with breathing and we decided the best option was to intubate him before it became a necessity. Holy shit. How can something so serious happen and Shane and I have no idea? I had a million questions but just wanted to get the gist of what was going on, so I held my tongue. Shane had popped in twice to check if he was ready before this and they said they were still getting him situated. We by no means expected a Dr. who had hands on our son to stop what they were doing and run to educate us...but there are a lot of nurses in there and someone....ANYONE..could have given me a minute of their time. We deserved that..we definitely didn't deserve what had just happened.
  I only caught a taste of the worst...and let me tell you, it is unbearable. It is everything you feel when that thought occasionally crosses your mind, for no good reason at times. Only 100 times worse, and I had a good reason. You know, the thoughts you would have as you read about other babies, or with no particular trigger you'd find yourself trying to imagine what it would be like if you were to lose your child. I'd be alone and a mess....but just like you, I could stop thinking about it..go to Emerson's room and watch her chest move up and down as she slept peacefully. I could stop thinking about it because it wasn't a reality. Now I face the thoughts everyday for my son, watch his chest move up and down only because a machine is forcing the air in, wishing it wasn't my reality.
I don't want to know what it's like...please don't let me have to find out. I'll ride this roller-coaster but I want to make sure we all get off when its over.

WARNING for my pics below, my son is intubated which may be disturbing to some.

Duking it out

 

 Since the moment that helicopter left for Duke I knew emotionally I needed to get there ASAP but the rational me wanted to wait until we had a plan that made sense. I was ready to leave right then, but played with the idea of leaving in the morning. A quick call to Mom and it was settled, we would go home to pack and head up.
 We got in around 9pm and walked back to see him. Through the door we had to get buzzed in to, a stop at the sink to scrub, a quick right and a glance later we were together again. It was magical. One of the students sat holding my guy in her arms. Something must have told her that is what I needed to see! It was reassuring for sure. Definitely let me know he was being loved even when I wasn't there. Of course I couldn't wait to get that nugget in my arms again.




  We met a couple next to us with the sweetest little 1 1/2 year old, Hunter. His dad was military and his mom had a baby girl a day after I had Hudson. They were from Ft.Bragg so he offered some much appreciated guidance to Shane and I on leave and insurance information. There wasn't a day that went by that we didn't think about that little man. So much so that as we were out picking up new blankets for Hudson we came across the perfect hospital friendly toy for Hunter and without a second thought brought it back for him. They took our first family photo (of 4) for us. Occasionally, we would run into his father in the hall and catch up on each others babies. It's amazing how quickly your heart grows to make room for these families facing the same situation.

 I thought as we walked in everyday that this was officially the saddest place to ever. Sick babies crying, toddlers with IV poles racked with meds and children crying for their moms at night. Witnessing the effort put forth for these sick kids just to walk around the unit, 3 nurses pulling machines and pushing poles, acknowledging that was all the equipment that was keeping them alive. Even with PIC lines in their neck, masks on their faces, they almost always had smiley eyes. So happy just to be out of that bed, in that room where they spend so much time.

  After talking to the Dr.'s our plan was to get our boy to gain weight. Our mom, dad, sister and Emerson came up the next day, it was rough for them as well because they had all been able to visit him in the NICU everyday whilst at Cape Fear, but this new move meant less visits. There was a memorable moment in this move..after two weeks Em was able to meet her brother. She loved it and I know it did me wonders.

Having both of my loves in my arms.....Something I started to think I would never get to experience.

    There were no major procedures or revelations so after a week in the PCICU (pediatric cardiac intensive care unit) so we were transferred to a step down unit. I was able to hold and love on my little as much as I wanted. We were able to sleep in the same room and could actually have family time without worrying if Emerson was bothering anyone or being concerned about how many people were in the room with us.

I wouldn't have made it without my mom and sister. They have become an extension of me, knowing what I need when I need it and being there. Phenomenal ladies right here.

Though all of those perks didn't come without a price, the care was completely different. No round the clock monitoring..no nurse always feet away. Hudson was basically totally alone when we had to go eat or make a trip to Fayetteville for paperwork. That made me feel extremely guilty but it wasn't like I could pack him up and bring him with. As much as I thought about busting him out...that just wasn't an option.

  The one night we had to spend away we came back to a bad report. Hud had been inconsolable. My heart hurt and my mommy brain said it was totally my fault for not being there. As soon as I scooped him up all of his stats improved so that didn't help my guilt at all, but at least he was doing better.
The next morning at around 4:30am Hud had a fever and was experiencing an increased difficulty with breathing. The nurse had the rapid response team called to his bedside. Basically, the PCICU Dr's and nurses come over and access the patient and decide on whether or not they will take the patient back with them. Of course, Hud made the trip. We moved out of our room in the step down unit and waited to go back to see him in the PCICU.

A little bit of sweetness

In the middle of all that medical drama, we did have a few sweet unforgettable moments. See, when you have had a healthy delivery and baby you know what it is supposed to be like. You have your little person in the same hospital room where you can hold, kiss, love, and stare at your newbie all you want. You know what that is all about......and how amazing those moments are. Those moments did exist with Hud but were just sooo very different.

I could only be wheeled down to visit him..couldn't hold him..and had to get to know that gorg face through the glare off of his oxygen hood. Just a completely different experience to have to get to know your baby from a distance. I didn't feel so bad for me, I felt sad for him. He was born (which has to be somewhat of a stressful experience for them) and had been pricked and stuck..x-rayed and ultrasounded..in a room with loud alarms and other crying babies..noisy machines and bright lights.
My newborn was just this baby stuck on a bed. Love should have been the only thing that he experienced. I felt guilty. He was so close to me but so far from my arms. I wanted to hold my boy so.very.bad.



    Look at this adorable face with those baby blues...who wouldn't want a little snuggle?

 Sometimes Huddy would lick the hood. It would look like he was attempting to lick his way to freedom! SO so funny.

One of our first pics together.. love this little monster and he loved his little paci.

Hudder butter had a name tag made for him which was cute...but that also meant your baby had been there for quite some time. Seriously the days mix together and feel like weeks and weeks like months.. you lose the concept of real time because so much is constantly happening and changing. So many way more important time consuming matters to worry about...Time was flying, just not quick enough to make this all a memory.

Then the day came when I was able to hold him. It was absolutely one of the best days ever (I now have days that trump this one but still). I can remember the excitement..I wanted to cry. The nurse heard me talking about how sad it was for him to just lay there all day and have minimal skin to skin contact. She walked away only to return with a smile. She said that there was no way she could let another day go by without me being able to hold him. She got the OK to let us use a tube of oxygen to allow flow while I held him. Milestone, enthusiastically accomplished!

(Huddy's first smile)

A notable low would definitely have to be the day I was discharged without him. It was hard to get wheeled out and have no baby in my arms. To make matters worse, I had to pass a mom being transported at the same time with theirs. Each time I passed a door with a lovely tag...my heart was heavy. I knew that they weren't going through what I was. Part of me thought that it wasn't fair that it was me but the other part acknowledged Hudson was where he was supposed to be. He had a great support system.... we might not be the most appropriate at times, and we might laugh too much, sometimes we argue, but we always love. He will always have love..........annnnnd humor ;)

We were ending week 2 in the NICU when one of the Dr.'s had approached us about Hudson's medical situation. We had no answers. Besides the change to a nasal cannula from the oxygen hood (which was major bc it meant I got to hold him whenever), we were no better off than we were 2 weeks ago, his progress had plateaued. I knew it...and of course so did they.
 The cardiologist wanted to know how we felt about transferring Hudson to Duke. Our cardiologist was actually from Duke and had a practice in Fayetteville that he worked out of 3 days a week. He was aware of the kind of care Hud would have accessible. We needed more tests and more answers...we just needed more than Cape Fear could offer. I knew medically Hud needed to go, but emotionally I didn't have a plan so I was scared to have him 2 hours away. I loved most of the staff, all of the NICU nurses were amazing. I had my favorite, Marcie and I was sad to leave because I was afraid the new nurses wouldn't know his story and care about him the way she/they did. I was torn but knew what I would do....so I signed the transfer papers just in case. Shane had bought tickets to go see Superman early that morning.....we were coming up on the time of the movie which just so happened to be the same time he might be getting life flighted out. Because the tickets were already paid for I decided to go with him...as much anxiety as it gave me to do so, I did it for him. I knew we needed some non NICU time in our life. There was no way we could have predicted that Hudster would be life flighted out. If you've seen the new Superman you know the beginning was really similar to our situation. Sitting in the leather chair while Shane munched on popcorn and slurped his soda I was dementedly picturing myself as Lara(superman's mom) and Hudson as Kal-El (superman) watching and reliving the day he was born. Then having to place him into an incubator and sending him off in a vessel all by his lonesome. SERIOUSLY?  That really just happened in this movie? WHY would my husband make me watch this?! Ugh. I was crying like a moron and no one could possibly understand why. I kept my phone in my hand on the loudest volume possible and didn't give 2 craps about anyone getting mad if it rang mid movie. Well, 30 minutes in and we got the call that Duke would be arriving in 30 minutes to take Hudson. We were 20 minutes away. I tore through town and we ran through the hospital and made it just before they took him out of his crib and onto the stretcher.

My heart broke...I was soooooooo sad. I had no idea when I would see him again. I wanted to follow them but I had nothing planned, packed or prepared. So emotional. We hurried to the heli-pad and watched them load up and take off. I was a mess.

Goodbye my little Superman, I hope to see you really soon.