Our little "Tayvie-Doo"

Tayvion's Third Christmas!!

2008-12-11T19:44:00.000-08:00

It is Christmas number three with our little precious Tayvion and we are so excited to celebrate another year of good health, lots of laughter and lots of LOVE! You have reached unimaginable milestones and are doing very well in regards to your overall health this year as well. We have had a few scares, but nothing we weren't able to get through with some strong antibiotics and steroids! You have had some unexplainable (to doctors anyhow) bleeding in both ears, so we have been keeping you comfortable with ear drops and motrin! You are a little fatigued more easily now also, so I am wondering if we shouldn't make an appointment for Endocrine soon to check your thyroid levels. You have finally reached the 20 pound mark and weighed 21 pounds even at your last weigh in...you will not be the "biggest loser" this year, that's for sure...and I have an amazing bi-cept to show for it! =0)

Your brother loves you to pieces, however, has become more aware and sensitive to public scrutiny that we go through daily. We recently went to see Santa at a Children's Morning and on the car ride there, he was very concerned with how others would receive you. "What if they laugh at him, Mommy?" he asked me. "What if they make fun of him and make him cry?" I again (for what seems like the hundredth time) explained to him that I would not let anyone hurt either of you, with words or hands, and that if people stared at our little Tayvie-doo, we would act proud of him and show others how wonderful you are and how much we love you. And if questions were asked we would tell them, "That is how God gave him to us, and God makes all mommy's boys so special." He held and rubbed your little hands all the way there, and I could hear him in the back seat telling you, "Don't worry, Tayvie, I won't let anyone pick on you. I love you." My heart melted and I realized that I have the BEST Christmas present each day in the gift God has given me when he blessed me with such beautiful angels in my life! I was so happy when others received you with tons of compliments about how "precious you and your brother are." I made sure to point out how much others loved you both and thought you were so cute.

How could you not love these adorable little Christmas faces???

You are so FUN right now and absolutely love all of the joy and laughter the holidays bring...the decorations, the lights, the songs..."Jingle Bells" is your FAVORITE and we sing it hundreds of times a day for you!!! You anxiously sign, "more," when we are finished so we will sing it again for you! Your brother ADORES you and loves your new matching jammies!

Cousins are the BEST

2008-10-19T15:59:00.001-07:00

You absolutely love your cousins and I am so happy that you are beginning to show an interest in others, particularly young babies who love to roll around our floors with you, pull down your pants as they chase after you, trying to use you to crawl, and pull out your hearing aides each chance they get!!! We were blessed by a visit from Uncle James, Aunt Chrissy and little Dylan last weekend and they spent the entire weekend with us, cutting wood for the winter, going to the pumpkin patch, and hanging out! You loved playing with your cousin Dylan, and loved that he would roll around with you, even though you loved using him mainly as a pillow for your head! I love the happy little bug you can be on the days when you are feeling your BEST! God bless you!

Yes, My child has CdLS...who am I???

2008-10-15T19:00:00.001-07:00

This tends to be a more difficult question for me this week...although I find it a very good blog-challenge question for all families who are blessed with any type of child with a disability in their family...I do not typically have time to participate in "blog challenges", but found this one a MUST for me this week...

Who am I? I bet several people reading this would be able to answer this perfectly for me, as I tend to be extremely energetic and passionate about my life, my children, and my family...yet as I attempt to answer this question tonight, most of my answers would include my children and my family, mostly my children...so it might prove more difficult for me to answer, than I had originally thought. I watched a Dr. Phil episode tonight that reminded me so much of my family and what it has become since the birth of Tayvion...and the family struggled with two young boys born with the same rare congenital heart defect, which spun their family into crisis, not once, but twice...Rev. T.D. Jakes said that the family had learned to survive in constant crisis mode, living life in the fast lane, due to the constant medical needs of their two young children. And I had to relate almost 100%, as my family too, has learned to live in a constant state of crisis and chaos since Tayvie-doo was born. I rarely speak of this constant state, as I tend to sugar-coat things for others, tell them how well we're doing, and hope for the best...but this constant state of chaos and crisis can at times be draining, to say the least. And it is not that I do not want to talk about these things with others, but often find that others may never be able to relate, unless they too, had the gift of giving life to and raising a child with such special medical needs. And what has become oh, so normal for our family, would look nothing short of chaotic to others...so at times, I find it better not to discuss any of it all, since it is too difficult to explain...so, who am I??? Well, during the day, I am a School Psychologist for children with severe emotional disabilities...I am a friend to the teachers and staff I work with and a source of support and encouragement to the teachers and children I work with...I counsel children with emotional disturbances and assist in managing their behaviors in the classrooms...I am a tender and funny person, finding the best in each teacher and student that I come into contact with during the day...By mid-afternoon, I drive home with my "mommy" hat on, pick up my five year old from school and head home to our beloved Tayvie-doo...some days I am able to change my clothing into something more comfortable as I switch mental gears to mommy-mode, as therapists come in and out of our front door, in hopes of helping Tayvion develop at the best rate possible...of course, I am also the chef, the maid, and the soccer/wrestling/t-ball mom, making sure we all eat before heading off to practice...I am also superb at mixing formula for the Kangaroo pump for the car ride here, there and everywhere!!! Oh of course, I am the laundry lady, who makes sure school uniforms and work clothing are clean, folded and put away for everyone to find...I am the person who keeps our home in order, writes out the bills, and notes to Kindergarten teachers to see what field trips I might be able to attend to remain involved in my five year old's life as well...so, Who Am I??? I am who I have become a Graduate level professional, a mother, a wife, and a woman in need of some time to herself...but I am also grounded and realistic that this is what my life has become and I would not change an ounce of it for all of the money in the world...I get sweet hugs and kisses from both of my boys and husband, and the rewards far outweigh all of the sacrifices...Tayvion is now waving hello and bye-bye, thanks to all of the hard work, devotion, belief, and love we have given him...he giggles, laughs, and smiles, sometimes having a difficult time going to bed, because he loves to be with me so...so much that he hates leaving to go to sleep...who could ask for anything more? My five year old thinks I am "the most beautiful lady ever," and "doesn't care that I have rolls on my belly (ha, ha)..." and his friends tell him, "Tre' your mom is pretty!" and he thinks it's great!!!! We share secrets, kisses (of course when no one is looking), color together, and read tons of stories...sometimes the same ones over and over...I am who I have become and will be who I am meant to be as I grow, mature, and age...I would not change who I am for anything...I am hoping to be all I can be in the many more years all my boys' lives (husband included)...for as long as we have to be in love with each other!!!

First Professional Photos...

2008-08-22T04:30:00.000-07:00

I am happy to say that we finally did it---we finally took you and your brother for your first professional photo session together!!! YAY! We are accomplishing BIG things this summer!!! Although I made the appointment for well before your scheduled nap routine (thanks to nurse Tracey), someone was training and we waited for almost an hour...you were miserable, not to mention that I believe the lighting in the room really irritated you, as your eyes watered non-stop and you kept them closed for much of the session. I am so proud to be the mommy of these two handsome, wonderful BOYS!!! Your brother kept telling the lady, "don't do that, he has a feeding button, he doesn't like to sit like we do, he will cry if you move him because he doesn't know you, and he likes to lay on his belly...do you have any pillows?" She sure did, thanks to Tre'von!!!

Daddy's boy

2008-08-19T19:26:00.000-07:00

I guess that I haven't written much about your father, so I should add a ton about him, since he is also your primary caregiver in the evenings when he gets home from work...we share a lot of responsibilities taking care of you after Tracey has gone home and I give him props---he can take care of you like no other! You screech when you hear him come in the room and he screeches back at you and you laugh and smile...you know it's him and get so excited! I know that most days he is exhausted, since his work is very physical, but that NEVER stops him from getting down on the floor with you to play, feed you, or give you a bath...and the two of you have this "secret screeching lango..." I will never understand!

Brotherly LOVE...

2008-08-19T19:17:00.000-07:00

You love your brother...that is one thing I am soooooo certain of...look at your face, look at how peaceful you seem, when he is near, touching you, holding, you and being with you...

I've added some older photos from last summer and your first winter, when you had your wild and crazy hair-do...when I look at these older photos, I can't help but remember how much your brother wanted a sibling---to play with, laugh with, and share a room with...and how much he has grown since becoming a big brother! He will being Kindergarten in a few weeks and asked me the other day if you could go with him. He is so gentle with you, but also so rough with you, which you love...he recently began doing some crazy Karate chop with you and you get laughing so hard that you "toot" and actually sometimes need your diaper changed!!! It's hysterical! He will be your hero for many days to come! He has grown into such a mature, strong little boy...he has had a monumental summer---taught himself how to ride his bike, without training wheels one week before he turned five, and basically taught himself how to swim the full length of our pool in almost a week...I can barely keep up with him in the pool any longer. He has your father's athletic ability and my brains...what a deadly combination!!!

Update on your eyes...

2008-08-19T18:58:00.000-07:00

Today was a tough day for us. We re-visited the doctor that originally saw you when you were six months old, almost a year and a half ago, for the potential Ptosis surgery (droopy eyelids)...the good news is, he was so impressed with you and your physical growth...the bad news is, the odds for surgery are extremely stacked against you. He basically told us that there are easy cases, mild, moderate, severe, and COMPLEX...he told us that you are the MOST COMPLEX he has ever seen in his career...so, our choices are: 1) leave your eye lids droopy, and hope that you continue to grow and develop and get past the hurtles that the droopy eyelids present for you, or 2) go for the surgery and be left with a host of other problems including: you may never be able to close your eyes again, we will have to use eye drops several times per day due to you not being able to blink or close your eyes properly, infection from the surgery which could lead to removal of the eyeballs, etc...we are devastated tonight to say the least...why is everything so difficult for you? Why can't one thing just be easy and actually work? It is the same thing we heard when we went for your consult for your cleft palate repair at the beginning of summer...let's wait and see, let's wait, let's wait, let's wait...As a parent, we always want to "fix" boo-boos, make life the BEST for our children, but with you, it seems like we are fighting and fighting and fighting, and not making much progress, leaving us feeling so desperate and helpless...almost defeated. I wish so badly tonight that you could talk and tell us what you think we should do, what you would want for us to do for you...and you continue to smile at me, laugh with me, hum your songs, and play as if life is the best...and only you know these things as so many of us miss each and every day. Your Coats' Disease in your Right eye is not doing well either, leaving us even more devastated at the possibility for one more round of surgery to seal the leaks in the vessels behind the eyeball and see what happens...your retina is at high risk of detachment at any point now, so again we wait, wait and wait...we are using prayer and hope that something will turn out right for you...I have to admit though, despite your visual delays, you are so SMART! You are consistently signing "more," "all done," and sometimes even "stop." You have picked up on sign language quicker than I thought you would, although you can be a typical two year old at times and only use it when you want to and feel like using it!!! We love you so much, Tayvie-doo, and hope we are doing right for you...we worry that sometimes our best is just not enough...I can remember all too well, the day after you were born, a Developmental Specialist came to see you and told your father, "Do not waste time trying to "fix" the things that are wrong with him. Love him as he is and let his development take its course as it will." I remember how mad your father was and how hurt we both were at the thought of someone telling us that, the day after you were born...but tonight I wonder how much this extremely wise man knew, about your development and the tough battles we would have ahead of us...tonight I will try not to feel so defeated, but will try to feel blessed by having you in our lives to love, as you are...

Our first camping trip!

2008-07-13T07:01:00.000-07:00

Well, we finally did it! We took our first camping trip together as a family!!! And what a trip it was...five days at Piseco Lake in a pop-up camper, and tent for you to roll in during the day, of course! We all had such a great time and you took your first ride ever in our boat! You HATED the life-jacket and cried until the boat started moving...and then you signed, "more, more, more!!" You slept through the night in your pack-and-play and adjusted well to the day-time routine of playing on the beach with your brother and taking lots of long walks in your stroller! You loved every minute of it!!!! We are so proud of the little man you have become and look forward to many more trips this summer, since this is my 1st summer off ever!!!

Happy Birthday, Two Years OLD!

2008-06-27T19:46:00.001-07:00

Wow, the time has just flown by without me! I do not know where it has gone, but we have all been so busy!!! On June 9th, you turned two years old and on June 6th, your brother turned 5! So, on the 14th, we had a nice celebration at our home for you both, together. That is the way Tre' wanted it. He wanted for you both to swim with family and friends and "eat cake." So, that is what we did. It turned out to be a beautiful day, right until the very end of the party when it rained, and so many friends and family were here to share you and your brother's day! It was VERY hot that day, so we took turns taking you in the pool and into the house into the air conditioning to cool you off...you do not do well with the humidity---you have a hard time breathing and you just want to be left alone...you took a nice long nap that day also, which helped you get through all of the excitement!

At two years old, you are the most amazing little person I have EVER met in my life! I am so in love with you and just absorb each little milestone or "cute" thing you do each day...and each day there is always a new one...you now sit perfectly on my hip (without throwing yourself backwards) and truly enjoy traveling around the house with me while I cook dinner, put laundry away, help Tre' with coloring or playing or just hanging out with me no matter what I am doing. I never thought I would be so thrilled to have a permanent baby on my hip, but you can sit there for as long as you'd like! I have waited what seems like forever to be able to carry you like this...and makes me feel more like your Mommy; for every mommy loves having a baby on her hip! After all, that is why God gave us such big ones! While on my hip, (just recently), if you feel you need my attention, you take your hand to turn my face toward you, as if to say, "talk to me, not them..." It is the CUTEST thing EVER!!! And then you smile...you have a smile that can light up the world...there are no problems in the world when I see you smile...if you can smile, so can I.

Your health has also been amazing. You have had a few bad spells getting through the humidity, and of course, along with that comes the oxygen and the endless nights of worrying about you...but you seem to make it through and have endless strength and courage.

Easter Egg coloring and drawing

2008-03-19T19:36:00.000-07:00

Tonight we decided to color Easter eggs. Tre' loves to color eggs and you decided you did also! We were quite impressed with you ability to hold the marker in your pincer hand, as you typically fling anything out of your hand that is put in it! You were so intent on coloring and made so many "thinking" faces as you did...of course, you also colored your shirt, the tray of the high chair and your face, but we are amazed that you were able to COLOR!!! Yay for you! Happy Easter!

So BIG in my standing frame

2008-03-15T17:46:00.000-07:00

Here you are in your standing frame....what a TASK this has been for you, but we KNEW you would get it eventually. You are stubborn beyond words and it has never been your inability to do these things, you just do not WANT to do sometimes! You have the most determined personality I have ever met, and most therapists melt at your most pitiful (fake) cry...so we take our time and make sure you are ready for each task we place before you! You know that each and every one of your therapists will snuggle and cuddle you if you cry and you use it to the fullest of your advantage sometimes...and I am left to just giggle and walk away at the sight of them sometimes with you, for I (as your mommy, of course) know your secret "manipulative cry" and I LOVE how smart you are to manipulate them all!!! We are so proud of you, Tayvie-Doo and know that although your development will be slow, you will develop in your own time and have already surpassed expectations of all who met you in your first 24 hours of LIFE!
We love you!!!

20 months old

2008-03-02T18:51:00.000-08:00

Today was a good day and you were so happy!!!! You love taking a "tubby" with your brother at night and laying in bed with him while he watches cartoons...Seeing this photo of you makes me realize how big you are now, and how you have lost that baby-look, despite how tiny you still remain...our challenge this week is to figure out how to increase your calories, since for the first time ever you lost weight this month...you have been so HEALTHY this winter and haven't had much respiratory distress, compared to last winter...so we are stumped! But you have also grown so tall...you are now 29 inches long and weigh 17 lbs. 10 oz...believe it or not on the Cornelia de Lange charts you are OFF the charts for you height and are showing up in the "normal" baby charts in the 10th percentile...you are in the 95%ile for your weight...so, should we even be worried about your weight loss??? And you have become so ACTIVE! You are now in your walker daily, you are standing in the standing frame for Physical Therapy (and also just whenever you'll get in it) for 32 minutes at a time! Your jolly-jumper is also your favorite, but we limit your time in it since you love to wind the thing up, then pick up your feet so you will SPIN! And if we put you down you will roll all over the house from the living room to the kitchen, looking to see where everyone is...

I am having a very difficult time keeping up with this blog, so I will continue to post when I get a free moment...I am very busy these days---still working at BOCES and also doing one or two evals per week for the Center(for three to five year old children)...and of course, trying to keep up with doctor's appointments, therapies, wrestling practice for your brother, and the daily stuff...you are my inspiration to keep going...despite how tired I may be...when my "work" day is done, my fun begins at home with you and your brother! Each weekend I am reminded of how much I miss you when I am not at home, and wish that I could be here with you more during the week...I love being able to get up in the morning and see your smiling face (since you are sleeping when I leave most mornings), feed you all day long, play with you, give you a bath, and not be so rushed for appointments, work, or therapies...and you love to go "bye-bye" to visit family and friends. You get so excited to get in your carseat with your hat on! You LOVE hats, but love them more when they cover your eyes...you laugh so hard! On weekends, when I am home with you, I am reminded of how simple life can be and how we all need to learn to slow down and appreciate all of the little things in life...I am relaxed and a sense of peace fills our home when the door does not open and close a dozen times and the phone does not ring (or if it does I can chose not to answer it!).

Tonight your brother, Tre'von, asked me if he would ever have a "real" brother---I almost cried. When I told him he has a "real" brother, he said, "no, mom, a brother that will play with me and wrestle me." I know that he loves you---he brushes your hair every single day, lays on the floor with you, and pushes you around in your walker...but I also know that he too is affected by not having a "normal" sibling...I am hoping that as he grows he will understand more about you...and will understand what a gift it is to have you in our lives...I believe he will be a better person because of it, as we all are.

Christmas two with Tayvie-Doo!

2008-01-01T18:54:00.000-08:00

Merry Christmas, Tayvie-doo!!! You had such an amazing, healthy couple of days, most likely due to all of the flu shots and RSV shots you've been getting...our entire house was sick, including Tracey (your nurse) and Aunt "Bun," but not you...you have been super at fighting things, unlike the rest of us! =( We celebrated Christmas Eve here at our home with Mima, Poppy, Aunt Keisha and her family, Aunt Jolene, and Tracey. We started out the day by getting a "tune up" on your hearing aids in Albany...they decided to turn down the volume a bit since you are so over-stimulated while they are in

18 Months Old!

2007-12-21T17:06:00.000-08:00

I really want to capture your early months, but also want to keep track of latest events...so I will try very hard to do BOTH!
You are now 18 Months old...recently you had surgery for Coats' Disease in your right eye (11/28/07)...it was not detected until you were a year old, but progressed very rapidly...the vessels behind that eye were leaking blood and fatty tissue, putting you at risk of retinal detachment as well as a host of other eye problems, including the possibility of having to have the eyeball removed to prevent pain. We were devastated at yet another surgery for you...but what a little trooper you've proven to be...so strong and courageous...the most stubborn person I have ever met also...you have gotten so smart and strong. You are now rolling all over our house, getting stuck behind the television, under your bed, and the couch. You love knocking over Tre's Lincoln Logs when he builds, getting into his coloring books and crayons when he colors, and watching him play with all of his matchbox cars on the floor. You have developed beyond what most would have imagined for you at this point...but not me---I knew you would do it; I knew that no matter what, you would be so determined to do more than 'the expected.' You have always had that spirit about you---even way back when you were 2 weeks old, fighting your biggest fight after being drugged up and intubated for FIVE whole days, when the surgeons messed up, had to sew you up and wait to re-open you to do the operation the right way...

You are most hysterical during your therapies---somehow you have chosen your "favorites" and "not so favorites." Our home and our lives are bombarded with people in and out, all day long and all evening long...funny how you know that if you cry during therapy, they will immediately hug and kiss you, even if nothing is wrong with you...you already know how to manipulate the situation to get out of doing "work." You love occupational therapy and have developed a bond with Julie (your therapist) like no other...she steals your kisses and you get the biggest SMILE on your face---you know you have her wrapped right around your finger also, but funny how you don't have to cry for her to know that...you're too smart.

2007-10-29T15:17:00.000-07:00

My pregnancy with you, our little Tayvie-Doo, seemed completely normal...up until about 28 weeks. At 9 weeks, due to a horrible fall down our beautiful wooden staircase, it was confirmed that everything was "normal" and you were healthy, despite the bruises I suffered---thank goodness! At 16 weeks, it was confirmed that we would have another energetic boy and we were so excited for that we would another beautiful boy! Your brother, Tre'von, wanted a sister, but was OK with a brother also, as long as you would "play cars with him!" =0)

At 28 weeks when measured at my appointment, the doctor was shocked to find my belly only measuring 24 cm! There were no major concerns yet, at least for the doctor, as your daddy and I are both small people...I had only gained about 15 lbs. at this point also, which also wasn't a major red flag, since I only gained about 28 with your brother altogether and carried him to term. It was decided then that I would have a repeat ultrasound and meet up with the doctor again in a few weeks...at this point I was a little nervous, as I had noticed that you didn't "move" with the vigor that your brother had...I also was even more nervous that I didn't seem to be fitting into my materity clothing the way I had with him...I was gaining weight, but it seemed like it was in all the wrong places...

After the ultrasound, I met with the doctor and still wasn't measuring the way I should. He mentioned to me that the ultrasound showed you as being in less that the 5th percentile for head and femur length. "Maybe we messed up your due date," was all he had for me at this point...so we would repeat the ultrasounds every two weeks...this is when I began to be very nervous...why wasn't my baby growing? What if falling down the stairs really had hurt you? I began eating every few hours (healthy choices, of course) and decided that I would no longer exercise as I had been, to see if maybe you would grow better...had it only been so easy! At 35 weeks, FINALLY, it was decided that I would go for a Level 2 ultrasound in Albany, to see if there was something more going on that a level one ultrasound wasn't detecting...at this point I had had 5 regular ultrasounds and NOTHING had been detected...

On Monday of my 35th week, your Mima and Aunt Keisha joined me for a trip to Albany for a Level 2 ultrasound...I was very nervous, just wishing it were all a bad dream and hoping that you were healthy and everything would turn out just fine. One moment that sticks out in my mind now that I look back was when the ultrasonographer (?) asked me if I had opted to have any screening done for Down's syndrome? I immediately panicked and asked, "Why does he have Down's?" Of course, she could not say much about what she saw and told me that the doctor would be in to see me. When he came in, he gave me the same line, "You're small, baby's small..." Your heart was healthy and your brain seemed healthy, you were just very small---at that time, 35 weeks into my pregnancy, you only weighed 2 lbs. 15 oz. And if the doctor suspected anything else wrong, not a word was mentioned to me...it was also detected that the placenta was "thickened" and the umbilical cord was "marginally inserted," and in addition, the cord only had two instead of three vessels...I cried many hours for you after this appointment...I cried not knowing what was wrong with you, would I carry you to term, would you be healthy and able to live being so tiny when you were finally born...I loved you so much and just wanted you to be OK. I was ordered to have daily non-stress tests done if that's what I felt I needed for you to make sure you were OK...in addition to this, I was also ordered to see my regular doctor at least once a week until you were born...

That was on Monday and my doctor decided it was not important enough to call me back until Thursday...I was angry that he blew me off the way he did and even more angry at his response to me when I finally reached him after swearing at his secretaries (I apologized and felt badly, but was so worried about you)...when I questioned him as to why he took so long to get back to me after I was told to take all these precautionary measures to protect and monitor you, his response to me was, "well, if they thought you were that high risk, then why didn't they keep you in Albany?" He agreed to see me the next day, Friday, the day you were born, and also set up a non-stress test...

The day you were born seemed to go so slowly, yet things happened so quickly...God Bless the biggest angel in my life, your Aunt Keisha, for I do not know how I would have gotten through this day without her. We spent 6 hours together in the room for the non-stress test...and I never did figure out why it's called non-stress, because all I did was STRESS! You were not moving hardly at all this day and had slowed down your movement significantly since that Monday...your heart rate was very low and although you were not in any major distress, you only moved once in that 6-hour span...I was sent for a biophysical profile, which you failed, mainly due to lack of gross motor movements. At this point my doctor, who had left me there for over 6 hours without coming to see how I was doing or to tell me what was going on, came to tell me that an ambulance would be taking us to Albany Med where you would be delivered via C-section. I was devastated, scared, confused...I remember rubbing my belly hoping you would just start moving all around, like it was some kind of bad joke you were playing on us all for that day...Tre'von, your brother, was home with your dad, getting ready for his 3 year old birthday party for the next day.

When I called your dad I tried not to be scared, but could do nothing but cry...I cried for many reasons; I never got to say good-bye to your brother that day and he was such a mommy's boy, I wanted to hugh him and tell him sorry for not being able to have his party the next day with all of us there, I wanted to wait to have you naturally so I could show everyone that you were fine, and somehow I instinctively knew deep down inside of me, that once you were born we would finally have answers, but life would never be the same...the ambulance ride remains a blur to me. And I know that the people riding with me were very nice, but do not have any recollection as to what they talked to me about. My mind wandered to so many places during that ride and I was so scared of what was to come. I longed to go home, start the pregnancy all over again, and have you grow and develop as you should have, and erase all that had happened up to this point...

If one thing in this life is true, I love your Aunt Keisha so much. She got me through child birth with your brother, and once again remained my angel on the day you were born. I believe that we were born for each other, as our mother has written in our baby books, and God knew how much we would need each other during times like the day you were born. She made sure lots of prayers were said for us that day and as I lay on the table for the c-section to begin, I knew that no matter what happened, we had lots of angels in our lives to love us and see us through no matter what may come.

I do not remember much about when you were born, but I do remember that when you finally came out, there was such a long silence from everyone in the room...all of the doctors and anesthesiologists who had encouraged me that "everything will be fine," were now silent and not answering my questions as I screamed them. I will never forget the stoic look on your father's face as he tried to keep himself together and comfort me at the same time. I screamed for someone to tell me what was wrong with you and then I heard you cry...all your father said to me was, "there is something wrong with his hands," and then it was decided that I would do better to go to sleep so they could finish operating on me and so I could see you when I woke up.

I was awoke to the vision of the chief of pediatrics at Albany Med holding photos in front of my face saying, "your baby has Cornelia de Lange Sydrome and this is what he looks like." I was so drugged up at this point that I could not talk...I had words in my head but couldn't move my mouth. I looked around the room from your daddy, to Aunt Keisha, and to grandma and grandpa longing for someone to make sense of it all for me...how could it be? How did we not know? Did I do this to you and how would I ever forgive myself if it were in fact MY FAULT? I was told that they did not know how long you would live and that several specialists were seeing you to assess how badly the situation was...all I knew was that you were my baby, my little Tayvion Marcus, and I wanted to hold you, nurse you, and love you so much while I could. I had to get to you, but couldn't move...my legs were still numb and I felt awful...my belly was sore and I felt like I would vomit at any moment. So, I fell back to sleep again, hoping to wake up and have it all be just a bad dream.

I will never forget the first time ever I saw your face...it was so very different from the first time I met your brother...I was overwhelmed with sadness for you; you seemed so tiny to me, all 3 lbs. 11 oz. of you, and so helpless...yet there was this overwhelming sense of a presence much higher than most of us ever get to experience while alive...you were like a tiny little angel and if I looked hard enough at you, I swore God gave you wings, which is why your hands and arms do not look like most everyone elses. And speaking of that, to this day your arms and hand deformities are the first thing people notice, of course, and I am sure that they are overwhelmed with the same sense of "pity" I felt for you when I first met you. It is difficult for me now to think back on my emotions those first few moments; it is difficult not to feel so guilty for the pity and sorrow I felt, but yet it was so raw and real to me in those first few moments...

You had so much hair, as did your brother, and the strangest little uni-brow and there seemed no distinction from your uni-brow to your hair line...there was just hair everywhere, all over you! And you had the tiniest little down-turned mouth and upturned nose. I saw subtle resemblences of your brother in you, you were as bronzed and brown like caramel, just like him when he was born, yet I also saw flash-backs of the photos of your "syndrome" that the doctor had shown me the night before. I was so sad not knowing how long we would have to get to know you, so sad not knowing what exactly CdLS was and how it would affect your life, and so overwhelmingly sad that I created this life for you...how could this have happened? Despite all of the questions we did not have answers to, I knew that I had answered some questions in my own heart and mind: I would love you forever, figure out how to care for you, and give you the BEST life I could for as long as we were blessed to have you with us. I was not allowed to hold you just yet since you were still fragile and being monitored so closely...I had never heard of a mother not being allowed to hold her baby and was a bit upset at that, but I touched your beautiful hair, rubbed your face and leaned in to kiss your beautiful skin...you smelled just as your brother did the day after he was born, that is something I will never forget! Shortly after our few moments alone in the NICU with you, where you would live for the next few months, we were taken away by a doctor to inform us of all tests done on you thus far.

All of the medical terminology was so confusing---we learned that you had a cleft plate (hard and soft, not to be confused with cleft lip, which you did not have), a VSD in your heart that should repair itself with time, congenital hypothyroidism, which meant you would be followed by an Endocrinologist, you failed the infant hearing screen, which meant you would need an official hearing test later on, you were anemic, which meant you would need iron, and for now, you would be fed by a NJ tube through your nose until you could tolerate nursing or drinking from a bottle...all of the other medical terms will come at a later date! Who knew I would know more than the doctors about you in the later months to come?!? The important piece was that your heart and brain seemed "OK" and you were breathing on your own without oxygen support (at that point)...

The next 24 hours were crucial, so the doctors told us...during that time, you would be seen by a Cardiologist, a Plastic Surgeon (for your hand deformities, as well as your cleft palate), a Geneticist, to confirm your diagnosis, a Pulmonologist, a Gastroenterologist, a Nutritionist, and a plethora of other "ologists" to make sure you were healthy and able to survive...you were a fighter from the beginning...however, eating was such a difficult process for you...I tried so hard to nurse you, but you were so tired, and never woke up to eat...therefore, a feeding tube was placed through your nose to sustain you. Well, you made it through the first 24 hours, and several hours to come...the doctors were amazed at your ability and desire to live, and we only wanted to have you in our lives to love...

I was released from the hospital after five days and one of the worst days of my life was leaving the hospital without you! I longed for the "normal" home-coming with my baby, longed for our "normal" life to pick back up where it was left off on that day you were born...your brother visited you often at the hospital and although just three years old, I will never forget what he said the moment he met you: "Mommy, can I give him three of my fingers so he will have some and I will have some?" Tre'von is and has always been your biggest hero, your best buddy in the world...and I do believe to this day that he would give you his fingers, if he could. He never asked many questions, as three year olds do, but just instinctively knew that something was "different" about our lives now that you were born...he wanted to bring you home each time he saw you, wanted you to open your eyes to play with him, wanted me to be the mommy he knew before you were born...after I came home from the hospital, your father and I did rotating shifts to be with you night and day---I dropped your brother off at daycare in the morning to rush to Albany to be with you, 35 miles away, and at 4:00, I left and your father showed up after to be with you until late in the evening...each night around midnight or so, when you were in the NICU with only the nurses, I could call to see how you were doing...I HATED not being there with you, but knew that your brother needed me at home as well...you had good nurses to care for you around the clock, but it still felt so odd to not have you home. I cried many nights wishing you well enough to be here with us, in your bed next to mine...I was so emotionally drained and still searching for answers as to how this could happen to you, how we didn't know, how we would care for you once you were home, how would we keep our home for you to live in if I couldn't work, how long would you live, would you ever walk and talk, would we be able to care for you by ourselves after so much nursing and doctor support? I prayed to God each night to give me answers, help me through this difficult time, and teach me how to care for you to get you home...and that's when it happened...

I woke up one morning before getting Tre' to daycare and decided that I was your MOTHER and I was going to feed you, I was going to care for you all day long and not ask for help from the nurses...I wanted to know you better than they did, I wanted to research everything and find the BEST situation for you to live in, I wanted to give you the BEST life possible...life in the NICU can be very enabling, but can also give you a sense of hopelessness that they (doctors/nurse) know better/more than you...so, from that moment on, I decided I was going to know MORE!

You still were not feeding well after two weeks and refluxing incessantly...upon reflux, you were aspirating and requiring such a significant amount of oxygen while eating...after contacting the Foundation for your syndrome, I decided it was time for an upper GI series of tests to be done...sure enough, you had SEVERE reflux and could not tolerate feeds without aspirating...two days later, at only two weeks old, you were scheduled for surgery...our nightmare had just BEGAN! The doctor decided that you would need a Nissen Fundoplication due to the severity of your reflux, and in addition to this, he would place a feeding tube, since your suck/swallow/breathe reflux was very poor.

The beginning...

2007-10-28T18:51:00.000-07:00

I wanted to start this blog for friends and family to keep touch and follow our "little Tayvie-Doo" as he continues to grow and flourish...but also wanted to write a bit about 'the beginning,' as therapy for me to remember and recapture the early events of your life...our little Tayvion Marcus Joyner.