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.
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.
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.
I chose to let my "Meeting Hudson" post be exactly what it was. I wanted to describe my emotions through it all without junking it up with all the medical issues we face. Still those issues are such a huge dictator in our life right now that there is no way I can side step them. So lets just jump right in to it.....
During our visit with Hudson we were approached by a NICU Dr. that informed us Hudson had a complete atrioventricular canal defect or an AVCD/AVSD. This means that the separation between the 4 chambers of the heart are not completely formed. Because of this, the oxygen-rich blood mixes with the oxygen-poor blood (this isn't a scientific explanation, otherwise I would have copied a google link or definition) and there is too much sent to his lungs. Essentially flooding them. His heart has to work harder to make sure everything gets enough oxygen..it beats faster.
Hudson, just like every baby also has a PDA or patent ductus arteriosus. This artery should have closed after birth, his of course did not. The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.
Coupled with his defect ...it's bad news bears for Hudson. Surgery to correct this life threatening defect (avcd) would usually need to be completed between 4-6 months old.
As sad as it all was to take in we knew that whatever it took we would do. We knew that there was a fix. Hudson just needed a few days to work on this new breathing thing and then we would get to take him home....right?
Wrong.
He required just a whiff of oxygen to keep stable. Every time they tried to wean him off he would dsat. He had many echo cardiograms, lung x-rays and blood draws. They sent his blood to the geneticist at UNC Chapel Hill and we waited days for the results. Mainly, we were just awaiting the confirmation of his Ds. There are 3 different types....one of them actually being genetic. It was important for us to know what to expect in his future. We had already been researching and planning out his care. We wanted our boy to have the best possible outcome.
Shane and I decided once we found out we were having a boy that we would be done having babies. One boy and one girl...who isn't OK with that?!
But honestly, after feeling robbed of an amazing birth experience I couldn't see myself ending on this note. If the Ds( Down syndrome) was genetic that of course would be a factor to consider with in our decision.
The blood results came in about a week later. That is when we discovered surprise number 123940930442. The Dr. started with the information on his Downs. In Hudson's case just a spontaneous defect of the 21st chromosome. Hence, he has Trisomy 21.
You see, those with Ds have 47 chromosomes while you and I have 46. Hudson has 48. That's right, my boy is extra extra awesome.
This is where we talk about said 48th chromosome. The blood results also found that he had yet another syndrome...REALLY??????? and the two combined were so very rare that there is virtually no medical cases to reference. He is somewhere around the 5th case reported in the world...yes, that's right....like, only 5 people ever have had this combo...(since medical/genetic testing has started to document) Who expects that kind of news?!
This syndrome isn't life threatening and doesn't change the outlook of his life expectancy. Basically, the symptoms are physically opposite of T21. A tall lengthy build to include long fingers and big feet(so maybe he didn't get those from daddy!). These children will often be taller than average. So it will be interesting to see how his T21 and this new syndrome mix. We are flying blind through that part of his life since only time will tell.
Now, if we fast forward a few days after that bomb...during a routine blood CBC they found some immature white blood cells. These malformed blood cells are found in cases of TMD(transient myeloproliferative disorder) and leukemia. Mmmmhmmm that's cancer. This will just be monitored with frequent reviews and if it continues to be an issue, there will eventually be a bone marrow biopsy.
WTH?!? Can my kid catch a break already?
Shane and I had been a constant in the NICU, while trying to maintain some kind of normalcy for Emerson, getting paperwork for insurance and birth certificates and social security documents done...don't forget working sleep somewhere in that mix. We basically lived out of our car...driving. I often forgot I had just undergone a major surgery. I was the last thing to be worried about though. My recovery with Hud was completely different than with Emmy. I think my body knew it had to heal quickly so I could keep up. Soooo thank you, body..for that...
