And the other shoe drops...

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...

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 :)

 

 

Surprise

My whole life I've never actually been surprised...I was the kind of kid who ruined Christmas by sneaking peeks into her parents closet, the kind of little girl who begged her friends to tell her what they got for her birthday...that young adult who "accidentally" found an email about her engagement ring, yeah sadly that was me!

I was always complaining about how I've never actually had a legit surprise in life... Even though ultimately it was my own fault. So with this pregnancy I figured I'd wait to find out the sex till birth......wellllll maybe. BUUUT, We all know as a 28 year old woman I still wasn't able to curb my curiosity. Little did I know the day this little boy was born I'd get more surprises than I could ever dream of..Definitely enough to make up for the absence and absolutely enough to last a lifetime.

Let's talk about the day my little boy was born..

Hudson's birth: 5/31/13  weighing 6lbs. 8oz. and 20in.

Thursday night contractions were pretty regular and just felt different than my regular braxton hicks. We went in and I sat in the triage room for hours hooked to the monitors. We said we wanted to attempt a vbac, but after waiting with only morphine that had already wore off I was over it. I wanted to be done. Not to mention while waiting I heard 2 moms screaming their heads off and was scared shitless(yeah, that just happened.. I said shit).

My Dr. came in with an OR nurse to help me decide with various facts..blah blah blah. We decided to move forward with the Cesarean and my Dr. said he had two other procedures before he could get to me, so it would be a few hours. My contractions were crazy bad and I was at 5cm. I cried through every one and finally after another hour asked the triage nurse for some kind of pain medicine. My OR nurse, Claire was waiting for in there as well. She came in, checked me and said I can't believe they are letting you labor in this triage room with no meds waiting for them to finish. This is just horrid, what if something else comes up and they push it back even more? She left for a little then came back, moved me to a L&D room, ordered an epidural and waited with me. The anesthesiologist came in and administered my epidural. He asked all the usual questions (the ones you don't particularly remember, unless you had to answer yes to any of them) and just as the last words left his lips "....ringing in your ears"... slowly I began to feel pressure and started to feel a little off, my ears didn't have ringing but was more comparable to being under water. He asked Claire about my heart rate and she let him know it was OK. He then advised her it would probably increase and again, not much longer after that I went from 70bpm to like 120bpm, and had a bad case of the shakes. He immediately pulled it out and they pushed 2 bags of fluid through my IV within a 3 minute span.  He said he had hit a blood vessel and the meds went directly into my blood stream so he had to do it again. This was most uncomfortable. Finally, it was in, I wasn't in pain and life was amazing. About 15 minutes later a man comes in and introduces himself as the one who will be performing my surgery. Errrrm happened to my Dr?! As pissy as I may have wanted to be I also thought who cares?! I wanted Hudson out!

So they wheeled me in to the OR, prepped me and started. Shane was brought in and everything was how I remembered it being with Emerson. My Dr. was singing and carrying on with his tunes, all was going well. Next thing I know, Hudson was out. He was crying at first and then it was quiet. My eyes welled up- finally my boy was here! FINALLY!
 I waited for the typical update and for his sweet face to round the sheet so I could lay eyes on him for the first time. I waited and waited for the update...asking Shane if everything was OK. I could hear the nurses whispering and asked him to try to listen. He couldn't make out what they were saying, so I waited...finally my anesthesiologist said she would go check on him. She walked away..and again I waited. When she returned but didn't volunteer an update I chalked it up to maybe she forgot(heyyyyy give me a break, denial and drugs were at play here!). So...I continued to wait... Finally a new face popped around the corner. She asked his name, "Hudson" Shane replied. She continued to say "well Hudson is having some breathing difficulty and it sounds like he may have some heart issues we are going to have to take a look at......Hudson also has some markers of Down Syndrome".

 BOOM.
There is no font large enough to describe the impact of those life changing words.
 My head turned away from her while my world stopped, I didn't hear a word she said after that and I began to cry uncontrollably. Still being stitched up they tried to keep me calm but there was no chance I could be reasoned with.
I had waited 9 months to exhale...waited 9 months for that moment of his arrival to relish in the joy of seeing his face..all fingers and toes accounted for and of course to know we had a healthy, beautiful baby. I never got to have that exhale. I was robbed of that moment I had been anticipating. Instead it was replaced with grief, confusion, sadness, disbelief, and probably a little bit of anger. I was selfishly mourning that life I had already been planning out. Mourning the little boy I thought I was having, sad that my little man would have to one day face adversity. Thinking that they had to be wrong. Releasing each of those emotions in every tear that rolled. My husband was a rock, stroking my hair and resting his forehead on mine..assuring me we would get through this and everything was OK. Claire came around grabbed my hand and she cried with me. She cried like I could have been her daughter and her empathy let me know my reaction was OK. As I looked around and began to realize again that we were not the only people in the room I could only focus on their eyes. We all know that's really the only part you can see of a person when in the OR and every set of them was red. All of them trying to maintain a professional tone but each extremely affected by the circumstances.
 My anesthesiologist cradled my head in her hands and wiped my tears away. No sooner than she wiped that I was drenching my cheeks again. As she spoke I could tell she herself was fighting tears. Her voice was cracking as she asked me to try and calm down. Finally, they brought Hudson around and I calmed myself enough to kiss his cheek, instantly feeling guilty for my reaction and mentally confirming that my little man did indeed have Downs. As much as I wanted to deny it at the time, it was obvious.

Then he was gone. I was wheeled to recovery with Shane while Claire went to get my mom and sister. She allowed them in even against policy and even watched Emerson while they were back with me. No one knew, so when mom walked in Shane had finally given in and began to cry. Neither of us could get it out. Mom of course thought the worst case scenario and began to repeat "what?" "what happened?" as she cried and wrapped her arms around Shane. She thought the worst, that our little boy didn't make it. Finally, Shane was able to get the words out...."They think he has down syndrome and he is having some breathing issues" and suddenly our reality wasn't so bad compared to the alternative. Claire came back to give me a hug, rubbed my hand and said she wished us the best. She had stayed an extra hour and a half after she had got off. Just to support our family, and that was amazing. I was taken to my room where I was able to sort through what the hell just happened and try to make sense of it all. Meanwhile, Hudson remained in the NICU. I wanted to see him asap and start bonding with him. I felt that was even more crucial now with this change. Unfortunately, I wasn't able to see him for a few hours after delivery.



Don't you worry I'm planning to describe that experience separately.

Ladies and gentlemen, this is only surprise number one. Why don't you follow me on over to the next post.........but before that I have this gem to share.

 

This was in triage after they said we would be getting ready for a c section :) My crazy husbands humor gets me through most days.

It's a boy

"It's a boy", three of the most beautiful words I've heard since "it's a girl" was spoken some years ago. My mind instantly began to plan out our life. My sassy little lady and my sweet little gentleman playing with daddy in the yard, what it would be like grocery shopping with two instead of one, going to the beach, witnessing all of his firsts, spending time at Grandma and Grandpas house...while forcing many many family photos of them through it all! I planned his room around the green color we painted it for Emerson (she was moved to her big girl room). There was no question, Alligators it was. I handmade his wall art and bought the crib bedding. You know, did all the normal things moms to be do. My Dr. set our csection for 6/7/2013...we finally had a date and I had my life planned out, that quick. 

 The only thing missing was our boy.

What you've missed...

Not because I haven't been posting or anything.............!

Shane came home!!
Watch his video HERE  (Seriously you want to! It was super sweet)

I got pregnant!! As a result of the above :) ( see some pregnant lady pics below)

Em turned 3 years old see details of her mermaid party here (coming soon)

We took a trip to Disney World...what a blasty blast.

Shane turned 30..woahh

And we found out we were having a BOY!!!

Daddy was home this weekend, mainly because it was a 4 day and we were able to sqeeze a worth while trip home in...and it doesn't need to be said that of course we had an amazing time. This was his last trip home until he reports to his new unit here at Ft. Bragg in a few months.
 It's quite ridiculous the little things you come to appreciate when someone else actually does them. Not having to fill a sippy cup, getting to skip out on bath time...snacks..entertaining. It's so so soooo nice to have those little things get done and not actually be the one doing them.. It's sad that I can't remember a time having daily help. I am going to be in heaven when all of this is over. Each time I have to give him back to the Army it makes me realize how truly ready I am to have him home for good (well "good" isn't totally accurate, we are talking about the Army here). If everything goes right...my husband will be home on 8/18/2012...Ladies and Gents that is one day away from my bday! I hate to rush one of the few years left in my 20's down the drain buuuut the countdown has begun. Bring on 28 as long as my husband is the one delivering it to me. Well that's the major countdown anyways, we still have a week trip to Augusta to see him for the 4th of July. Next, Em and I are driving down for a day trip on July,18th for his AIT graduation...then FINALLy we will be heading down to Ft. Benning to pick up my Airborne school graduate and bring him home! I hate that our visits are coming to an end...but it means is that all of this is almost over. We have ALMOST made it...we've barely survived...but the finish line is finally within sight and I am ready to rip through that damned tape, stomp on it, punt it, and then burn it.

Sad rabbit isn't tall enough for lazer tag.

So over mini golf

Daddy teaching his lady how it's done properly

Again, Daddy teaching how it's done properly.



Memorial day cookout and some sprinkler action.



Memorial Day

My husband and his father participated in an 8 mile run, in which funds provided would be matched and donated to the Wounded Warrior Project. They ran down our busiest stretch of road carrying the American flag in honor of those who gave all. I am so proud of my guy. Watch the video HERE.

The world lost someone great..

This is my way of honoring who he was.


http://fortbragg.patch.com/articles/mark-salazar-s-death-is-a-loss-to-our-community

Mothers Day

Happy to celebrate the day with my ladies. Nothing super fancy just a BBQ and family....perfection.

Em in boots

Goodbye beloved rain boots, I'm sad to see you go! Sad because it means they have become just a memory..every picture will take me back to my daughters toddler years. I'll be able to remember how she would refuse to leave the house without them on, that when I hid them because they didn't go with an outfit she would still stand her ground until I caved. I'll remember trying to dig around in her closet to throw stuff together that somewhat matched for when we would go out in public...and secretly hoping it would be a rainy/over cast kind of day so I wouldn't have to explain! That..she even wore them around the house.....with nothing else on...yup nothing. I have my very own Em in boots..

Anyways, I figured it was too hot to wear them everyday now and started the search for something comparable ...I scored these gems at Old Navy (for those dying to get a pair). They were perfect!! She has all but forgotten about her rainy day wears.....


Meet "cwow-boy bootsth"..I'm sure you'll be real familiar soon ;)