Maddox at THREE Months...

In case you haven't realized, I just love my little guy, so here are a few pics...

 

Maddox at 12 weeks in an outfit from ME!!!

Maddox looking like he's laughing at his own little inside joke!  I love love love this one!

This isn't actually taken today, but we will use it as his THREE month SUPER Baby picture!

 

***Posts are written chronologically, but delayed, so Maddox turned THREE months as I was writing, that's why it may seem out of order.***



Keeping Mack in or maybe on the edge of the Maddox loop...

Mack is ONLY ten, but she is a very mature ten, but still a ten year old little girl.  I've always talked to her truthfully and as an adult, but also try and remember she's a kid.  When it came to Maddox, I wasn't sure exactly how to approach everything.  This was her new baby cousin she was SO excited for...UNCLE BRANDON'S BABY!  She LOOOOVES her Uncle Brandon.  I didn't want her to be too sad, scared, I don't know what.  Sometimes I may underestimate her.  She has been through some pretty heavy things for a ten year old.

Anyway, like I said previously, in the beginning I said that there was something wrong with Maddox's back and that he had to have surgery and left it at that.  From her reaction and the way she told other people, it seemed clear that she thought just that was pretty serious.  While I was gone, I updated her on Maddox when I visited him and sent pictures.  When I came home, I told her all about my trip and showed her even more pictures.  Things seemed positive to me so they probably sounded positive to her.

As I received news and updates, I shared the news (not all of it) with Bill in front of Mack.  More so she would overhear instead of telling her directly so she was always on the edge of the loop.  As grown up as she is, this was such new territory that I wasn't sure how to handle it.  Maybe it was me, maybe I wasn't ready to handle it with her, as much as I thought I was.  I think mostly I didn't know how she would handle it and in some way, I was trying to protect her and I didn't want her feelings for Maddox to change.  I don't know why I would ever think that would happen.  I know better.  She truly is a miniature version of me.  You'll see later how she fully handled it. 

As the trip got closer, I knew I needed to break the news to her that Maddox's legs didn't have any movement.  I had anxiety over how/when to do this.  I finally did it one night while we sat on my bed.  She accepted it and didn't say much  I'm sure that after I said it that I spun out some great things about Maddox just as I had when I had told her about the shunt.  Yes, he'd had a surgery where a tube went from his brain to his belly, but he is doing AMAZING and is more alert with his Mom and Dad!!!  What concerned me about Mack knowing things was that she wasn't asking questions.  She generally accepted what I'd told her and that was that.  THAT was unusual for MY child! That's what concerned me a little and made me wonder what she was really thinking and feeling about Maddox.  I never wanted to question and push though.  If she was fine, I wasn't trying to make her think and feel things she wasn't.

I NEVER used the word Spina Bifida in front of her because I didn't want her to google it and read any information that I wasn't prepared for her to have or know.  I also DEFINITELY never used the word disabled.  Beyond the first or second day that Maddox was born and I was in that initial shock and panic, I never even thought of him as disabled, so it was definitely never a word that came out of my mouth after those days.  I don't know if I am in denial, but it isn't a word that I choose to associate with Maddox.  I suppose I don't like the connotation that goes along with it.  I believe Maddox is a MIRACLE baby and we all believe he is destined for greatness.  Yes, he may use a wheelchair one day, but so what?  Maybe I should look up the definition of the word.  But, since this is MY blog about Maddox, for the time being, you won't be seeing/hearing me calling him disabled.  So, those were words Mack never heard.

She knew what she knew, she may have inferred other things, but she was just as excited as I expected her to be to go to CT and meet and love on Baby Maddox!

In Between, Details, and Definitions...

This post may be a bit all over the place.  These are bits I left out of other posts, definitions, clarifications, and things that happened between my two visits.

In Quotes and Italics are Kelly's words:

"Along with the Spina Bifida, Maddox was born with a soft cleft palate in the roof of his mouth, a severely clubbed right foot, and a chromosomal defect (a large deletion of chromosome 2), paralysis of his lower extremities apart from the belly button and below. It is not believed that he will have any control over his bladder or bowels at this time. The chromosomal defect is so rare that there are only 10 reported cases in the United States and none of them have the same symptoms. We were told that there is a 100% chance  that he will have some sort of developmental delay, but to what severity is unknown. They will be following him as a case study to see what happens.
       
Immediately after his surgery, the focus was on wound care and trying to get him to heal up. The neurosurgeon thought that his incision was so large that he may have needed a skin graft. A skin graft was a huge factor with how long he would remain in the hospital. Luckily Maddox was such a great healer, that this was not the case. His incision however was leaking spinal fluid. He also had hydrocephalus (fluid pooling in his brain causing pressure). On January 9th, a VP shunt was placed through his brain running down his neck and chest and into his belly. The purpose of this shunt was to relieve the pressure of the fluid from his brain, and to prevent it from leaking from his incision. This surgery proved to be very beneficial to Maddox. Prior to the shunt, he was lethargic, sleeping the majority of the day and not being very responsive to stimulation. He was a whole new baby after the surgery, much more alert and aware when his parents and nurses were around. His incision started healing much better once the fluid stopped leaking. 

For the first two or three weeks, Maddox received all of his nutrition from a nasal gastric feeding tube. This tube went in through his nose and down into his stomach. On January 7th, the doctors gave the ok to try and give him a bottle. Due to his cleft palate, he needed a special feeding bottle with a haberman nipple. This soft tipped bottle, allowed the person feeding him to "squirt" the milk into his bottle and not have to have him worry about sucking. After a very scary go about with this, and him choking a few times, they felt he did well enough that he could continue to practice. If he wasn't able to master this, there was talk of him having to come home on a feeding tube."

The below information is from The Mayo Clinic website to help explain Spina Bifida to you:   

Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them.
 
Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone.

There are three types of Spina Bifida, the most severe being Myelomeningocele, which is the type that Maddox has.

Also known as open spina bifida, myelomeningocele is the most severe form — and the form people usually mean when they use the term "spina bifida."

In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.

Neurological impairment is common, including:

• Muscle weakness, sometimes involving paralysis
• Bowel and bladder problems
• Seizures, especially if the child requires a shunt
• Orthopedic problems — such as deformed feet, uneven hips and a curved spine (scoliosis)

Maddox did not have skin covering his defect and did not have a "sac"...in other words, everything was open.  Maddox was also treated for meningitis because of the way that he was born. 

Doctors aren't certain what causes spina bifida. As with many other problems, it appears to result from a combination of genetic and environmental risk factors, such as a family history of neural tube defects and folic acid deficiency.

There are risk factors, but that is more detailed and I am not going to go that far, again this information came from The Mayo Clinic's page on Spina Bifida.  They do say: "Most babies with spina bifida are born to parents with no known family history of the condition."

You MAY see the commercials on TV relating birth defects such as Spina Bifida to prescription medications, that can be the case (Medications are a risk factor), but was not the case for Kelly and Maddox.

Again according to The Mayo Clinic Website there are a "Range of Complications", since we are all only a few months in and generally do NOT use the internet to learn about or diagnose Maddox, I am only going to share the ones that have affected Maddox thus far.  Early into this journey that we are all on I learned not to google much (plus there's not all that much info out there) becuase I didn't want to learn about Spina Bifida online, but through Maddox and WITH Kelly and Brandon.  On my second trip to CT, I told Kelly that I don't look things up often (every now and then for reference/definition maybe) and that I would NEVER try and guide her or make suggestions when it came to Spina Bifida, but that I WOULD share with her ALL of my BABY knowledge because I KNOW babies and that she could choose to listen to what she wanted and disregard the rest.  That's why I do not want to spew the entire internet at you in my blog...if you want to google, by all means, google.  Anyway, back to the "Range of Complications" Maddox has and/or will/may be affected by according to what has happened and been said so far.

• Physical and neurological problems. This may include lack of normal bowel and bladder control and partial or complete paralysis of the legs. Children and adults with this form of spina bifida might need crutches, braces or wheelchairs to help them get around, depending on the size of the opening in the spine and the care received after birth.
• Accumulation of fluid in the brain (hydrocephalus). Babies born with myelomeningocele also commonly experience accumulation of fluid in the brain, a condition known as hydrocephalus. Most babies with myelomeningocele will need a ventricular shunt — a surgically placed tube that allows fluid in the brain to drain as needed into the abdomen. This tube might be placed just after birth, during the surgery to close the sac on the lower back, or later as fluid accumulates.

The ONLY other bits and pieces I have to add to this are that after I came home, I text every few days to check in on Maddox's progress and mainly his wound.  I SO hoped that he wouldn't need a graft or a shunt, although I KNEW the shunt was pretty much a definite from my cheated googling.  I knew he needed to be in the hospital, but I so wanted him home so they could be a normal family.  I'd come home and look through the pictures and cry and miss him and wish they could all be together!  Not wish that Maddox was different like you'd think because we were all happy with the Maddox we had, BLESSED with the Maddox we had, just wished the Maddox we had was with his AMAZING Mom and Dad morning, noon, and night!  After that, I wished and hoped Maddox would be home or well enough to meet his cousin, Mack, when she came to visit when he was a month old.  The hospital wouldn't give any timelines so I was pretty much losing hope there as time went on, but continued to be happy with his progress.  I still could've cared less if I could hold him, even though I wanted to, I wanted his parents to hold him whenever they wanted and Mack just to SEE him.  Brandon, Uncle Brandon to Mack said he'd MAKE it happen...Mack WOULD see Maddox!  He phrased it much differently, funnier, in a way similar to how I would've or how he said I'd knock people down to get to my nephew.  Once he said that, I KNEW he would MAKE it happen for Mack (HIS Burger Cheese!). 

When I got the first bottle feeding news from Kelly on January 7th, I was ECSTATIC!!!  I felt like that was a HUGE step and if they were talking bottle feeding in order to get him ready to go home, then it was REALLY HUGE!

When I would check in, sometimes I would specifically ask about THE shunt, is it looking like it's needed, have they said anymore?  Things were looking good, then one day I checked in with Brandon, obviously January 9th, probably asking how the bottle feeding went and received a text back saying that he'd just had the shunt put in and that the surgery went great, so on and so forth.  WHAT?!?!  Why am I finding out NOW?!?  Well, then again, the importatnt part is that it went WELL!  Then, after I could process what I read and breathe, I was actually relieved to not know until it was over so that I didn't have time to worry, panic, stress, cry, etc.  The scary part was over without me ever being the wiser!  So that was THAT!  TWO surgeries down!  Maddox is a BAD @SS!!  A few days later bottle feedings were resumed as long as incisions were cooperating!  I was excited that on my next visit when I talked to my little Baby Love that he would be able to look up at me and I could use my animated face and voice that I use with babies!  I couldn't wait to have a face to face conversation with Maddox!  It may sound like a small thing to some, but I was excited!  Last time, all of the things I said were whispered, and I'm sure I might whisper things again because I know Maddox can keep a secret, but I was excited to see his little face while I told him all the things I had to tell him...I couldn't wait!

 

 

Maddox's FIRST bottle!  The feeding tube is still there until he fully gets the hang of it!

 

 

Holding Mommy and Daddy's hands!



 



Maddox on his BACK!!  He wasn't able to be on his back due to his wound, but after having his shunt he HAD to spend some time on his back so that his shunt wounds could heal!  It was a welcome sight to see him like this!  I said he was probably more alert because he liked his new view, better than staring at a mattress!

 

 

Sleeping peacefully on his BACK after the shunt!

 

 

FIRST time in CLOTHES!! :-)

 

 

Maddox

 

 

Beautiful FAMILY photo!!  Maddox can be cradled!!

 

 

 Mother's LOVE!

 



My FIRST visit to Connecticut...

So, I'd made a quick rush decision to GET there...I needed to be with my family and meet Maddox and love him and then I could probably make myself feel better about everything that was going on.  I'll spare you the details of my CRAZY train ticket fiasco and ride, but it was just that on December 26th!  Before I left, I only let Mack know that there was something wrong with Maddox's back and that he needed to have surgery.  I let her know that he was a tough guy and that he'd made it through the surgery well, but that I felt like I needed to be there to support and love Brandon and Kelly and that I'd like to go ahead and meet Maddox a little earlier than planned.  She's a mini me in a 10 year old body and although that was all I was ready to share at that point, she realized that although she'd miss me, that I did need to be there and she was glad I was going.  So off I went. 

I got there around 9 PM on December 26th and was greeted by my Dad at the train station, we did a little bit of chatting about what was going on...how could we not?!?  Still not understanding how this went undetected, how amazing Maddox already was, how strong Brandon and Kelly are, etc.  I was greeted at the house by Jane and David, who I hadn't seen in over 5 years, Brandon, who I hadn't seen in 3 years and Kelly, who I hadn't met.  Except for the circumstances, it was GREAT to be there and be reunited with everyone.  We all laughed, cried, caught up on life and the baby of the HOUR, month, and our LIVES!  :-)  I hoped I'd get to meet this little guy the next day, but did not want to push myself into any situations.  He is NEW to Brandon and Kelly, their time is limited, only two people at a time can be with Maddox, etc.  When they asked if I wanted to go with them the next day, I let them know that OF COURSE I did, but I didn't want to impose.  Kick me out when you need to, I will bring things to do, I'm thrilled and honored you are going to share your baby and your time with me!  I was in heaven being with my family, and especially being invited into Brandon's little family!

So the next day Brandon, Kelly and I headed off to Yale.  When we got there, Brandon insisted Kelly and I go in first...I kept asking if he was sure, but I was so excited!  We headed back, did all the hand washing and headed over to Maddox's bed where his nurse began immediately giving a report of his day!  If possible, I was more in love than I had been before meeting him.  I was so happy to finally meet this little guy and to see that he was "ok" and in good hands and to be a part of his daily update.  I couldn't touch, rub, kiss, and stare at this little guy enough...I had to drink him in as much as I could.  This moment meant so much to me.  I loved watching and hearing him suck away on that pacifier!  The nurse said that he sucks as he eats through his feeding tube and that he shows normal signs of newborn hunger...I clung to any information as exciting and awesome good news!  I cried and cried happy tears just to BE there!  After a good bit of time, we decided to head out so Brandon could come back and have a turn and I'd go hang somewhere in the hospital.

I need to backup some here...

After Maddox was born, due to some of his features combined with having Spina Bifida, the doctors said there could be some retardation and that they'd do some chromosomal testing on him to see what was what.  Well, as I walked out of the NICU at Yale with Kelly to trade places with Brandon, he'd asked her if she'd talked to the doctor to which she'd replied she hadn't.  Brandon said he'd just seen him and that he said that all the major/full chromosomal testing came back negative!!!  Yayyyy!!!  I was so happy to be there to hear the good news!  They'd just have to wait to hear back on partial chromosomes.

I headed downstairs and cried more happy tears and entertained myself until Brandon returned.  Brandon and I took a turn going in to see Maddox and then left for the day a little bit later.  It was a GREAT day!  I got to meet my Baby Love, share in GREAT news with Brandon and Kelly, see the amazing strength and love of two amazing new parents, and have some quality time with Brandon and Kelly as well.  We talked in the car about how great things were going in just a few short days compared to everything that had been said when Maddox was born.  We all felt like IF the WORST thing that happened was Maddox not walking, that would be nothing compared to all the things that could've happened or gone wrong. 

That evening after Brandon and Kelly headed home they had texted for some reason and Brandon said Kelly wanted to thank me for going with them...I said, she does NOT need to thank me, THANK YOU for taking me and sharing your time and your baby with me!  Brandon said he knew I didn't need to be thanked as he could see me knocking people down and out of the way to get to my nephew!  :-)  SO TRUE!!

A few days later we returned to the hospital for my last visit during this trip...I'd be returning to CT with my family in three weeks.  Brandon and Kelly were visiting Maddox every day.  Their drive back and forth was about an hour each way. 

I can't remember who I went in first with, probably Kelly and all of her breast milk!  Ha!  She'd been pumping and we all laughed at what a milk machine she was!  I was super impressed with how much milk she was producing so soon after baby especially when her little baby wasn't with her.  Again, I got to hear Maddox's update!  I can't remember all of the details, but I know he had been getting breast milk in his feeding tube all along and a Gatorade type mixture either in IV in his belly button or feeding tube, but by my last visit when Maddox was just 9 days old, he was off the Gatorade type mix (I think or coming off of it) and solely on breast milk!  I also THINK between my first and last visit they removed his IV or did shortly after my last visit, maybe I knew it was getting ready to come  out...I can't remember the details, I just remember knowing there were more good things to be excited about.  The amount of breast milk he was getting each feeding was also increasing and he'd gained weight...I think he was around 5 lbs 5-6 ozs.  It was another wonderful visit, this time I cried and cried because I did NOT want to leave Maddox.  I felt bad because I knew I had my own family to go home to that needed me, but I did NOT want to leave Maddox.  I loved him so much and the thought of being so far was breaking my heart.  Eventually I had to kiss Baby Maddox goodbye until next time, I'm sure I kissed him AT LEAST 21 times to last him until I'd see him again.

All in all, it was a beyond WONDERFUL visit to CT!  Not just with Maddox, but with all of my family!  I couldn't wait to get back with my little family in a few weeks!

 

 

Here are some pictures from this visit!

 

 

 

My First Night - Jane, Dad, Brandon, Me & David

 

 

SO Nice to meet you!  Hello Kisses From Aunt Meisha!

 

Aunt Meisha, Daddy & Maddox

 

 

 

Daddy's FIRST time holding Maddox!  I forgot to blog about this!  I was downstairs in the hospital when this happened so when I saw the pictures, I cried MORE happy tears!!!  Maddox was 6 days old!

 

 

Look at that beautiful baby face!!

 

When I walked in on my last day when Maddox was 9 days old, this is what I walked in to...a WIDE eyed Baby Maddox!!!

 

Mommy and Maddox

 

Maddox holding his Mommy's hand!

 

Aunt Meisha holding hands with Maddox...I didn't want to let go!

 

Me and the NEWest LOVE of my LIFE!

 

Oh, so hard to say goodbye for now!

 

See you tomorrow kisses from Daddy!



I'm just going to start at the beginning...

I found out in early May 2012 that my brother and Kelly were expecting a baby, but were keeping things kind of quiet at least until their appointment. They had their first appointment a few days later and we all learned Baby would be a Christmas or New Years Baby...he/she was due on December 28, 2012. I will admit right now for those of you who may not know...My name is Meisha Bellaflores and I am a baby stalker...December seemed SO far away and so did Connecticut...time to start planning my stalking NOW! I only hoped for them that if the baby was born before Christmas that it would be born in time for them to be home for Christmas AND/OR that the baby would be born before the end of the year so that it could be claimed on taxes!  Ha!

The next big event in MY life was my Mamaw, my grandmother, getting sick and dying.  I spent a few weeks, her last few weeks in WV, with my daughter, Mom, and Aunt in my Mamaw's house taking care of my Mamaw 24 hours a day until she died and caring for her through her funeral.  Needless to say it was a TERRIBLE and rough few weeks that led to an awful summer for my daughter and I, however I wouldn't trade it for ANYTHING in the world.  There is nothing I would've done differently and nowhere I would've rather been. Mamaw died on July 28, 2012 and Mack and I returned home to VA sometime around August 4-6 after having been gone 3-4 weeks.

I decided we'd suck it up and leave the house and hit the beach and act like normal people for my birthday on August 9.  On that day as I sat on the beach, I was given the BEST gift EVER!!!  I found out that I'd be given a NEPHEW!!!  I was given a nephew for my birthday!!  I mean, I still wouldn't GET him until December, but I knew what I was getting!  :-)  I'd have been happy either way, but that was EXCITING birthday news, so I took it as a GIFT!  I needed it!  Happy Birthday to ME!!  His name would be Maddox Alexander!!  A little bit of normalcy washed over me as I sat letting the waves wash over my feet!  What a GIFT!!  If there ever was a day that I NEEDED such a gift, today was that day!  Now on this HOT summer day, I could start planning what color blanket I could crochet for my new nephew!!  I was turning 30, but I like to spend some evenings crocheting like an old lady...don't judge.

Next up as far as I can recall, I friend requested Kelly on Facebook...or maybe I had already.  With Connecticut being at least an 11 hour drive, I don't get to see my brother as often as I'd like and I hadn't yet met his lovely lady, so I did the natural thing in this day and age and friend requested her on Facebook.  Once I did, it was so easy to see the VERY obvious love they had for each other, a love I knew my brother had never had before.  From what I could see, they both seemed to be as happy as any couple could be.  Even more than that, they seemed to be just as in love with their soon to be born baby boy!  It was such a refreshing and beautiful thing to witness, albeit online, from afar.  Oh, how I wished I could've been more apart of everything in person!  Anyway, I continued to watch Kelly's cute as can be little belly grow and grow as well as their love and their love for their baby.  Kelly is and was as I watched on Facebook at the time one of those people that I could tell without having ever met, or having had a real conversation with, that I knew I would LOVE!!!  I was just so happy for the two of them and soon to be three of them!  I already loved them all so much!

Then came SANDY!  That is when I got my chance to have some one on one conversations with Kelly.  I had a lot of friends and family affected by Sandy and that left me in a panic for a while.  It wasn't like when we get a hurricane and lose power and it's 70 plus degrees, it was COLD there and that's what I think most people used to being hurricaned (I like to make up words) failed to understand and it irritated me.  You'll also learn there are plenty of things that irritate me.  Anyway, back to my point, they were hurricaned and at times, it was 40 degrees inside of people's houses and they were trying to keep their children warm, we don't have to do that when we have hurricanes.  Well, not having Kelly's phone number yet, and already knowing she gives longer and better answers than Brandon (I guess because he IS a boy!), I'd reach out to her on Facebook to see how they were doing after ?# days without power while she was 7 months pregnant with MY (all babies I LOVE are MINE, especially this one...HA!) precious cargo...I was worried about her tiny little pregnant self being so cold!  I kept wishing 1) they'd have evacuated here (normally we are NOT where someone would evacuate for a hurricane) and 2) they'd give up on living without power and come here NOW!  But, I could have used and would have LOVED a visit
from my brother and would have loved to meet Kelly and her bump, but since that wasn't happening, I kept in touch and checked in on Kelly and her well being through Facebook.  I loved her!  They toughed it out, and eventually their power came back on. YAY!

I continued to keep in touch with Kelly through Facebook, my Dad was always good about posting pics of his future Grandson, so I got to see the bump and I'd text my brother!  As winter grew near, we all started taking bets on when Baby Maddox would arrive and anxiously awaited his arrival!  Kelly's posts became cuter and cuter and we couldn't wait to see and meet that little guy!

Finally around mid December, we knew the date...a C-Section was scheduled for December 21st because Baby Maddox was breech.  Now that we all had a date, I tried so hard and wanted SO badly to be there, but with Christmas being so close and the distance and having my own family, I couldn't find a way to make it work, which was hurting my heart more than anyone could imagine.  I was able to be there for the births of so many friend's babies, but not my own brother's baby and it really did break my heart.  He seemed to understand and be ok with it, I was not and never really was.  As the day approached, I became more and more excited and anxious.  I text more and Facebooked more and Mack and I just could NOT wait for the arrival of little Baby Maddox and for our trip to meet him in January in less than a month, which seemed SO far away!  Finally, December 20th came, I sent a few good luck texts a long with the I love yous and some little suggestions!  I also asked my Dad to keep me in the loop on the 21st in case Brandon was overwhelmed.  I know how that day can go although today's technology wasn't available when I had Mack, I just know Labor/Birth day is a BIG and overwhelming day in a new parents life!

December 21st came and I was so excited!  I started texting more good luck and I love yous and texting my Dad.  I found out the C-Section was scheduled for 12:00.  I thought poor Kelly will be STARVING when it's all over.  I passed that message onto my Dad...they were having lunch before heading to the hospital and planned on bringing her some food.  I jumped in the shower sometime around 11:30-12:00 and said some prayers that all would go well during the surgery for Kelly and Maddox and waited as patiently as possible for when I'd next bit of news.  This is where things get rough... The next text I received was probably around 12:45 from my Dad and it said, "Baby was born and his back was open and his spine isn't developed and spine and nerves are exposed and his legs aren't moving"...I sent a series of panicked text messages with lots of curse words basically asking what this means, how did this happen, what do I tell my daughter who is expecting her cousin to be born at noon and awaiting his arrival?  Mack was in the next room.  I tried to have as discreet a breakdown as one can have.  I had NO idea what that text meant.  I had no idea if MY baby was going to survive.  I didn't know if I could handle this, how to handle this for my brother and Kelly, how to address this to my child, I had no idea what to do other than be in hysterics and PRAY!  I will admit that I am not a regular prayer.  I prayed harder than ever in my life.  To God, to my Mamaw, to whoever would listen and help.  I prayed that MY baby would be ok, whatever was happening, that he wouldn't be paralyzed, that he would SURVIVE.  Now 2-3 months later, it's almost a fog, but between that and everything with my Mamaw, that moment of panic and worrying about MY baby and his new parents and myself and my own daughter even had to have been one of the absolute WORST, HARDEST, and SCARIEST times of my life.  I knew how much Brandon and Kelly wanted and LOVED this baby and whatever was happening, I couldn't believe it was happening to them.  I wanted to be there.  I wanted to hug them.  I hated being here.  That may have been the worst part, being here.  Actually, I can't pinpoint the worst part...what was happening was the worst part.  I called my Mom in a panic crying to the point where she probably couldn't understand me...I don't really remember much of the conversation.  I remember her apologizing for this happening to them and ME because I'd had a terrible year, but really it wasn't happening to me, I wanted to fix it for them.  I do remember that my Mom asked if I needed to go because she KNOWS me and she KNEW I NEEDED to be there, but I KNEW that I couldn't leave Mack.  It would be our first Christmas at home, we'd always spent Christmas in WV with my Mamaw.  I'd anticipated this being a horrible hard Christmas without my Mamaw, but also a nice first Christmas in our house.  I couldn't leave, but I wanted to be with my other family.  Within an hour maybe...I have no concept of time, I received a text from my Dad that Maddox had Spina Bifida and that he would be transported to Yale.  Now that I knew what it was, I could calm down to a degree.  Calming down might be a lie, but I knew what was happening, I don't think there was any calm to that day, honestly.  Maddox would have surgery the next day to close up his back.  I was sent a few pictures of my beautiful nephew and my heart was more full of love that I thought was possible.  I looked up Spina Bifida, but not too much.  I was somewhat relieved...I figured he'd be ok as long as he could handle the surgeries.  I was ready to be his cheerleader and supporter 110%.  I was immediately thinking awareness, fundraisers, support, etc!  I will DO ANY and EVERYTHING I can for this baby, MY baby!  If it was possible, I loved Maddox MORE!  I have accepted this, I hope Brandon and Kelly can and will and everyone else will!  Even though I had jumped on board and was ready for whatever was to come that did NOT stop me from having a pity party for Maddox, Brandon and Kelly, and my family...I suppose.  This was all still within hours of birth.  Texts were flying back and forth with info.  At some point in between all of this, I did calmly show Mack a picture, which gave nothing away and said Maddox was born at 12:15!  Thankfully, she left with her grandparents shortly after so I was able to google, text, cry, call my Mom, go outside and smoke, lay in bed and cry more, repeat.  When Bill FINALLY came home, it was pretty much news to him because he had left his phone in his car, needless to say, he was just as shocked as the rest of us.  He sat in the recliner in our bedroom and I could see him glancing over at me to see if I was going to breakdown again.  I cried and cried.  At some point when Baby Maddox arrived at Yale, they gave all the worst case scenarios, Maddox will most likely never walk, have bladder or bowel control, etc.  There was more, it was worse...I can't remember it all, but those are the two that have remained to stick....he's overcome a lot of the others...in your face doctors!  Back to that day, the more I heard, the more I cried, the more I wanted to be in CT.  It was like when Mamaw died, even if I couldn't be with Brandon and Kelly, I wanted to be with my Dad, Jane(StepMom) and David(Younger Brother).  Those were the ONLY other people in the world feeling and thinking the things, I was thinking.  I wanted to sit at the table crying with them, being angry with them, whatever was happening...I needed to be with them.  I kept telling Bill that, but it was December 21st and I couldn't go anywhere...I could just text and feel drained.  I cried to Bill that I could NOT believe that MY brother who wanted a baby for SO long had a disabled baby, I asked if HE could believe that MY brother, Brandon,who HE knew had a baby that would be disabled for life?  Bill said no.  I didn't understand how this had happened to MY brother and how it had gone undetected.  I haven't really mentioned that, but I also had a lot of initial anger that something like that went completely undetected when everything I read said it shouldn't have.  So that is MY account of that main points I can recall of December 21st. 

This blog will mainly be my account, but of course I have asked Kelly for details I don't have or can't remember.  Plus, she will need to fill me in on updates!  Next well be her account of December 21st.

Kelly's account:  "We gave birth to a beautiful baby boy on Dec 21st, 2012 at Lawrence and Memorial Hospital in New London CT via C-Section due to breech positioning. The mood in the delivery room went from everyone being super excited and happy about the birth that was to come to shocked and full of gasps as our precious little boy was pulled out. Up until the moment of birth, everyone including our doctor believed that we were having a healthy baby. Even though we had adequate prenatal care including two ultrasounds, (one at 20 weeks and one at 38 weeks), his condition went undetected during pregnancy. During the 38 weeks ultrasound, they determined he was in the breech position, had low birth weight, and had hydronephrosis (fluid) on the left kidney. Maddox Alexander was born a tiny 4lbs 14oz. His size was stunted because of his Spina Bifida. Due to his unexpected condition, he was immediately sent to the NICU. He wasn't even weighed or measured in the delivery room. Within two hours of birth, he was in an ambulance being transferred to Yale New Haven Hospital about an hour away.       
Maddox was born with a large whole in his back called a myelomeningocele. Inside this defect, things such as nerves were not connected and missing. He was also leaking spinal fluid from this site. The evening of his birth, the pediatric neonatal surgical team came to talk to me about the surgery he was in need of. They told me that since it was so in depth and he was so young and tiny, that there was a large chance that he may not make it through the operation. Still in shock, I agreed and signed the consent. On Dec 22, at 7 something in the morning,at 19 hours old, he underwent a very in depth surgery to close up and repair his myelomeningocele. Because his defect was so large, the neurosurgeon had to cut flaps from the existing skin on his back to try and create a way to close up the hole. When the surgery was done, the incision took up the entire lower third of his back. After the surgery he remained on a ventilator for 2 days, and was only allowed to be in the prone (belly) position. We were not allowed to hold him other than a few rare instances where he was allowed to kangaroo with us, (we laid on our back and he was laid on top of our chests). I was able to do this for the first time on Christmas. This was the first time, 4 days after birth, that we were allowed to do any type of holding of our child. When the surgery was complete, the surgeon came in to talk to us. Because of the location of his defect, and the extent of it, they were pretty confident that he will never gain use or sensation of his legs. However we remain hopeful that he is strong and some kind of miracle will happen."

I can't clearly recall December 22nd other than knowing that Maddox's surgery went well.  I don't THINK until Kelly gave me her account now that I realized that she was told he may not survive the surgery...I CANNOT imagine being in her shoes, but what choice did she have?  I do remember that it was days before I knew Maddox's birth weight, which I felt like should've been another red flag in his 38 week ultrasound that something was wrong.  I made it through the next few days still in kind of a stunted fog.  On December 21st, in the evening, Bill did give me the go ahead to book a train ticket to go to CT from December 26th-31st.  That gave me some relief.  I could be with my family and SEE and TOUCH and KISS my baby in person and FINALLY hug my brother and Kelly.  By day two or three, I had learned though text from my Dad that Brandon and Kelly were accepting things, it was still hard, but they were being strong.  I cannot imagine being in their position.  Not so much for what was "wrong" with Maddox anymore as everyone had accepted it, but more for the fact that as a mother, I wanted her to be able to HOLD her baby, THAT hurt MY heart.  She always said she was ok with it, because as the wonderful mother she already was, she wanted what was best for her son, but I wanted all the normal new parent things for them.  Those were the things that broke my heart, although I understood Maddox needed everything that was being done. 

I went through Christmas and apparently Maddox helped me.  I had the best Christmas that I could've.  I wasn't dwelling on my first Christmas without my Mamaw.  I was dwelling on MY baby.  And, I was able to enjoy Christmas with my family here and for once watching Mack enjoy Christmas at home and playing with all her toys in her own living room...the Christmas we'd always wanted!  Now, it was time to pack for my loooong trip to see my Bellaflores family and meet that little baby of mine!

 

Here are some pictures from Maddox's first few days!

 

 

Baby's First Christmas

 

BEAUTIFUL Family Photo

 

Kelly getting to "Kangaroo" with her Baby Boy on Christmas Day