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.

Meeting Hudson

As I was wheeled into the pod my eyes darted around the room full of isolettes trying to find the one that housed my little. I was unsure of what my reaction would be, just trying to mentally prepare for what I would possibly feel...You know those deep inner thoughts that you just don't share with the world.. But I knew also couldn't wait to see him and to be able to really study his face. Learn his nose, peer into his eyes, get familiar with everything that made him, him. Though I wasn't sure what I would think or feel the second time around, I know that I wanted to give him the happy, loving welcome that he should have experienced the first time around. There was no doubt that I loved this little being, he came from me. It was just something different, and we are all often scared of something that is different. Whether we care to admit it or not. I know that my son is perfect just the way he is, which is why I can be honest about how I felt at first. I know that I have plenty of room to be a better person, and this little boy would be my guide. He would open my eyes to things I didn't see. We would teach each other, and learn from each other and as I sit here 4 weeks later I can say I am more enlightened than I ever imagined.

As we approached his crib I was nervous, but had that anxious mom instinct that wanted to have her baby close. My arms were aching to hold him. He was under an oxygen hood and to my surprise didn't even look as though he had Downs. He was my beautiful little boy and I was finally able to drink him in.

 

 

The reality was that he indeed was the gorgeous little boy I had expected. He had my hair, my mouth (which also happens to be his sisters) Shane's beautiful blue eyes (which his sister also shares) as well as long fingers and big feet.

 

 

 

 

 I was so relieved. There wasn't anything to be scared of, we would happily share this life journey with him. He was meant to be here...my body...the doctors...his body...we all missed it and here he was just as he should be. Now the only thing I could think about was getting my hands on that baby.......

  yes...I am fully aware of how fantastic I look :)