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

 

 

 

 

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.