Tregs surgery

Tregs diagnosis once made me feel isolated. But the week during Tregs surgery I watched an army surround Treg, complete strangers, embrace him in prayers, and in your thoughts. I’ve never seen anything like it. You all made Tregs surgery feel less scary, and more like a blessing, knowing he would be healthier than ever once he recovered.

Below are some of the pictures I took from

His surgery! If you would like to see I also made a YouTube video covering the whole process I’ll link here

When buddy was finally feeling more like himself and wanted to play with his Mickey and of course ball

Right out of surgery, still under anesthesia 

The waiting game (we spent two weeks in recovery)

Waiting for sweet boy to finally wake up

The day before we left-clearly he was feeling good!

Note his bloody nose from trying to yank out his tube while still extubated 

 Poor little babe.

i believe in prenatal testing, regardless of the abortion rates

why a mother to a down syndrome baby believes we should all have the option to free prenatal testing, even though it leads to 9 out of 10 abortions of a down syndrome baby.

me-“why aren’t you replying?”

me-“hello….you are starting to freak me out. just answer, did you get a hold of the dr.?”

husband-“lets just talk when you get home.”

i ring my husband.

“sweetie, i wanted to wait till you were home, but i got a hold of the Dr. and he said the results came back. Its okay, but i think there is a good chance our little one will have down syndrome.”

i was in the supply room of my work. i started crying hysterically. women passed by, asked if i was alright, i just couldn’t stop crying. i left work and rushed home. and we cried together. we cried for the life we thought our baby was going to have. and the reality we thought down syndrome was.

So when asked the question-why do you recommend the testing, If you don't believe in abortion, I say this-
regardless of who you are, what a good person you are deep down, you mourn a diagnosis. Every single family I have talked to took time and just cried. Because finding out your baby is going to have Down syndrome is hard. There is a lot of unknown. Many people have that mourning time once the baby has already arrived. Because they had no testing done, so their baby is a day one Down syndrome diagnosis. I found out because of non-invasive testing (meaning no risk of hurting that baby) that Treg would have Down syndrome while he was still in utero. So I had weeks to mourn, and research and be able to know everything I could, to give Treg the best quality of life, before he even arrived. So the moment he arrived I could jut enjoy my son. Soak up every moment of his new born life. Completely love him for everything he is. Rather than spending that time mourning, crying, and fixating on my newborns diagnosis.

I flashed back to this moment after an article i read. It was about the 60 minutes special that just ran on down syndrome and non-invasive prenatal screening. Those are my results up there^^

i did the typical quad screening and had some what of a red flag. I tested rather high for down syndrome, for a woman of my age. 1 in 80 chance my baby would have down syndrome. It still left me with a big uncertainty though…logistically the dr was saying i would have a 1.25% chance my baby would have down syndrome… that still seemed like pretty slim odds. and my Dr. agreed. he said most he had seen were somewhere closer to 1 in 4 odds. So he asked me if i would like to do non-invasive testing just to give myself peace of mind. I’m a worrier. So i opted to do it. 

obviously you know how that ended.

But thats all we got. we just got results.

I wasn’t offered any knowledge on down syndrome, i wasn’t offered research on down syndrome. All i had was my perception on down syndrome. and it was just the same as everyone elses. I had little knowledge about down syndrome, and i feel ashamed to say that my opinions were grim, and narrow-minded. 

although i was offered two things- the option to keep, or abort my pregnancy,

9 in 10 women with my results abort.

The 60 minute special discusses that Doctors in australia are lobbying to make the non invasive prenatal screening free. This is concerning Down syndrome advocates due to the high abortion rate, after a positive screening. We are concerned because we get to see the life that would have been taken. The life that fills ours with so much love, joy, fulfillment, and happiness. A life that we are so truly and genuinely happy with, we want everyone to be able to get the chance to feel this way.

But i don’t think it is the testing that is causing abortions. Its 1-the worlds negative perception on people with down syndrome, and 2- the lack of knowledge readily available once you get that positive result. I don’t believe the world will change its perception anytime soon (though i will try my damnedest for my son.) but i do think it would be very possible, and very easy to have information readily available for those who receive a positive result for the screening.

It is said that knowledge is the most powerful weapon, to change the world. 

if everyone knew the facts; and then maybe the not-so-fact, like how it feels when Treg looks at me with those almond eyes, or wrinkles that little button nose, or reaches those hard to get mile stone. Those statistics might be different.

Tregs therapies/exercises we practice at home

Ever since i knew Treg was going to have down syndrome, i have spent countless hours researching, and reading, trying to find ways to give Treg the best quality of life. We spend about 2 hours total a day, outside of therapy (which we have 3 times a week) working with Treg. Between oral skills, fine motor skills, physical milestones, we work on quite a lot. these are some of the things we do through out the day to help Treg meet those mile stones a long side typical children. Keep in mind- 1. Treg has an AMAZING team of therapists that are always there to help, and come up with new ideas for us. 2. Treg has extremely great tone for a baby with down syndrome. 3. he hates most of these. Thats why there is lots of fussing and crying in these videos hehe. Although, i will say once he gets good at a skill, he cries much less, and finds more enjoyment in his abilities, so it is worth the tears!

Jordan got a bunch of sensory balls off amazon, and we use the noisiest (tregs fav) ones to move around his face, to try to get him to follow around.

so this stepping is just a reflex, but is needed for walking. i do this with treg not for the actual walking aspects, but because it works his core, helps keep his head up for long periods, and keeps him weight baring on his legs.

this is to help treg keep on all fours, and rock hands to knees, a necessary step for crawling. a lot of times treg just wants to be on his elbows, but this helps support him on all fours for longer periods. 

although Treg has been rolling for quite a while, i still like to keep him rolling. we had a rolling regression at one point, i think due to a big weight gain, so it became more difficult. also, he still needs lots of tummy time anyway!

Eye contact. Treg still fell with in normal range for eye contact as far as mile stones. but it seems to be something he still has difficulty with. Mirror time has been key to helping his eye contact, and i have notice since i have been more consistent in making him do mirror time, he has become better at it, even smiling at his little reflection!

Looking back; an honest look back at my prenatal Down syndrome diagnosis.

I wanted to be more real than I have in my other posts about Tregs diagnosis. When I wrote my first blog to update everyone in my social media circle that Treg was going to have trisomy 21 I had already had so much time to consul my feelings, and feel positive emotions on our diagnosis. After the video we were apart of recently,  I had so many moms reach out to me and ask me, out of fear, how long did it take me to truly accept the diagnosis, and love Treg?  On the outside, just looking at my social media, reading my blog, it looks like I am made for this. It appears that Treg is the child I always thought I would have. That his diagnosis doesn't phase me, and that I actually enjoy tending to all his special needs. Well that is the truth-now. Although it was no where near the life I thought I would have, and I wouldn't have ever wanted this, before he came. So I just want to be raw and real for the new mothers that get the trisomy 21 diagnosis.

Down syndrome was in everything from the moment I got a positive on the quad screening test. I felt it from the moment I woke, in my morning prayers pleading "please if it's in your will, let Treg be a normal child." 

In every laugh someone else was having, I would think "they are lucky they can have so much happiness." In every baby I saw "why can they have a normal child?" I lived in Houston, and on average the mothers are quite a bit older, because they are career women. How did these women twice my age, have typical children? In every tear, when I would imagine my life in the future with a special needs child. I was so bitter. Down syndrome was in every feeling. Stealing all my happiness. 

I would say to myself secretly, that this was a mistake, and it would just be a miracle when Treg came out totally normal. He was so strong, so wiggly, he couldn't possibly have Down syndrome. But all the signs pointed against that secret wish. I slowly each day became a little less resentful. I began thinking of all the things I could do for Treg. I began to focus on the technicals. Everyone has a way of coping. mine was that if I was going to have a baby with special needs, I would give him the best shot he could get. I would  get him the best therapies, the best education, and know everything i possibly could to help Treg. I dove into research. I learned so much about Down syndrome, and I knew how I would take care of Treg. Because that was the only way I knew how to love him. But I didn't feel that bond. I would still find myself weeping in my car after work. Then one day I found myself in my car again crying over a problem with my insurance and worried about Treg not being taken care of. Saying to Treg with my hands on my stomach "it's okay, mommy will take care of us." My love for Treg was distant. It was hard. I never felt like he was "my baby" That was the first time I really remember feeling like a mother to Treg. 

Then, Treg was born. I held him for the first time, and remember thinking how small and helpless he looked, connected to a million wires, and thought, I am your mother, and I will do everything in my power to make you feel my love. My love grew from a technicality to a feeling. Weeks went by and I found myself proud to talk about My baby having Down syndrome to others. then months went by, and Treg became JUST my baby. I didn't see a diagnosis. I saw my baby. It just takes time. Time to find a love beyond what Treg has, and who he really is, all his adorable quirks, that might even be Down syndrome related. But honestly I don't realize that they are, because those things are just what makes my Treg, Treg. 

 Now Down syndrome is still in everything. From my morning prayer, "thank you for letting me be Tregs mom." To every laugh. When I walk into my house and hear Treg giggling with his dad. To every baby I see, and think "I would totally love to have another baby with Down syndrome."  Where it used to only take, now It brings me all my happiness. 

That "someone" you know that has a baby with Down syndrome

"Yeah, I went to high school with a girl that has a baby with Down syndrome."
"I go to church with a girl that has a baby with Down syndrome."
"I knew a girl in college that now has a baby with Down syndrome."
"I worked with a girl that now has a baby with Down syndrome."
"The lady that does my makeup has a baby with Down syndrome."
I have many titles, sister, daughter, wife, mother, makeup artist; and now I just have the one it seems. The person you know with a child that has Down syndrome. When I first found out when Treg was just a growing little one in my belly that he was going to have Down syndrome I thought about what others might think. I thought, "are they going to think that something is wrong with ME, since I have a baby with Down syndrome?" I spent so much time in the beginning consuming my thoughts with what everyone would perceive me and Treg as. Did people feel sorry for me? Did people think it was something I did wrong in my pregnancy? Did people.... every thought about what someone else might think.
I never thought about having a child with Down syndrome. I even volunteered with children with severe special needs and the thought never even crossed my mind that I could possibly have a child with a special need. I was healthy, young, my husband is healthy, young. What could go wrong?
So when I found out, licked my wounds, and healed- I decided I would tell everyone. I wasn't ashamed anymore. (Yup, im pretty ashamed of myself I could ever feel ashamed of a beautiful innocent child of God, but I'm only human. And I felt ashamed that I didn't have what everyone in this world perceived as "the perfect child.")
Then I became known as your (place relationship here) with a baby that has Down syndrome.
     When people first found out about Treg there was a lot of "he probably won't have It." Or "don't worry so and so tested positive for that, and didn't end up having it." And I understand that. People felt uncomfortable, they didn't know what to say, so they thought that telling me my baby probably wouldn't have Down syndrome, would give me comfort.
     A cab driver asked jordan and I while taking us to the hospital to see Treg why he was there. After explaining he said "hopefully your baby will be healed."
     When working as a makeup artist for Lancôme my sweet friend Tori and I were telling a woman and her mom about Treg. (Disclaimer this woman is sweet as pie) her and her mom then put their hands on my belly (Treg was still in utero) and blessed him saying that "God does not accept imperfection." In Jesus name.

Im not hurt by people saying crazy things, honestly I just laugh most the time. Because having a baby with Down syndrome scares people. It makes them uncomfortable. I wish that wasn't the case but I can't blame them one bit. I was that person a year ago. So that's why I am MORE than happy to be your (someone) with a baby that has Down syndrome. So you can see Treg. See how happy and fulfilling my life is because of him. See him for more than a baby with Down syndrome. See him as A BABY. A baby who loves to laugh, smile, eat, jabber, and take baths. Just normal baby things. Let you see the zillion pictures I post, in hopes that you get used to that look. So the wide almond eyes, with the inner crease, and teensy tinny nose might start looking a little more normal to you. So yeah, Treg can definitely be "that person" you know with Down syndrome:). But he is also so much more than that.

surviving the nicu

     

     After about a week of having my baby Treg in the nicu, I realized operation break Treg out, wasn't going to happen anytime soon. So i scoured pinterest for ideas, tips, anything about an extended stay in the nicu. And i found NOTHING. I was so sad. Not only was i a first time mom, the closest i had ever been to a nicu was greys anatomy. In my particular case, my baby was in the nicu for one month. Treg had an extended stay due to feeding issues, low birth weight, heart problems, breathing problems, and jaundice (twice). Which are all pretty common in babies with Down Syndrome-which if your new to this blog, thats what baby Treg has:)

     But i wont be focusing this blog piece on our particular case. I've gotten dozens of responses on my instagram and facebook when i posed the question to all nicu mothers "if you could give one piece of advise to a new nicu mother, what would it be?" and all the advise was incredible! So i have compiled a little list.

1. I'll be selfish and share what my piece of advice is. Now i may be a complete idiot but i had no idea what "care times" meant. I was all drugged up and crazy from my emergency c-section so when i snuck out of our room, and into the nicu at 4:30am the second day of Tregs life, the nurse asked "are you here for his cares?" I just stupidly replied, yes! and he told me the diapers were under his isolate. Well it took me a few days but i finally realized that Care times are just that, times you can care for your baby! In all nicus they occur every three hours, that is because after research and studies, it is proven that babies little hunger sweet spot is approximately every three or so hours. Our times were 2,5,8,11 round the clock. My favorites were early morning, and late night. No one was there, the nurses usually let me hold him as long as i pleased, and it was just quiet and peaceful. I would often opt to stay up late with Treg, and just skip a morning care and sleep a little. You go in, take his temperature (especially important if your baby isnt able to maintain his/her own body heat) change his diaper, the nurse would then listen to his heart, feel the pulses on his extremities, and then feed him. Feeding leads me to another thing, take all the free help you can get. Probably twice a day we would grab a lactation consultant, or occupational therapist, and ask for help with Tregs breast feeding. Its free and they love to help!

2. On a note of feeding, if your little one isnt feeding, learn to do the ng tube yourself. That is one thing i highly recommend. If you can be confident running your babies equipment, it will make going home so much easier! By the time we went home with Treg we were doing everything for him. We knew how to fix his oxygen, all the cords, what everything meant with that equipment, how to do his tube feeding, we were old pros! and trust me, you will be too when you leave!

3. Dont be afraid to ask questions. It can be intimidating when rounds come by your babies crib. A half dozen nurses and doctors speaking foreign medical talk. But that is the best time to ask your questions, and get straight forward answers. Most hospitals do round same time every day, so if you can only make it once or twice a week, write down all your questions, and unload! If you want to know an eta of how long you will be there, if you want to know "whats typical" in your babies circumstance, just ask! its your baby, and your his/hers advocate, you are your babies voice!

4. Which brings us to four. Do what you feel is best for your baby. Ever heard of the fed is better movement? Its heartbreaking that is even a thing. But the idea of it is, that feeding your baby by any means is better than starving your baby who cant for some reason sustain life of breast feeding. You have to ask for formula is hospitals, or else they will keep pressing breast feeding, so if you are so close to going home, but your baby isnt feeding, ASK FOR THE BOTTLE!

5. Bring snacks! Yes!!! Food makes everything better right? I remember days i wouldnt eat at all, because i felt i needed to be there, some days are just too important to miss honestly. I also brought my laptop to blog, books to read, i saw some mothers with coloring books, and of course a camera.

6. That brings me to six; take pictures!! I know your heart is aching. And it seems far fetched you will ever want to remember such painful times. but my nicu pictures are some of my most cherished. Below i have quite a few nicu pictures i adore, feel free to copy them, to make your own precious nicu baby photos. After all, your baby is only a newborn once, and you will eventually want to remember.

7. "This is only a season, whether its weeks, or months. You get to be a family forever" i had to quote that one because it was just too sweet, and so true.

8. Join a mothers support group, make friends of other parents in the nicu. You never know who you will meet, and who you, yourself could help. I was talking to a nurse about Treg having down syndrome and when the nurse left, the mother right beside me said "did i hear you have a baby with down syndrome?" "Olivia has down syndrome too!" This woman became such a dear friend to me. We learned how much we had in common, and she really pulled me through on the days i thought i was gonna make it. 

While i was there one long day i went in to the parents lounge to pump. There was a mother there laying with her baby, it looked like they were preparing to go home. i sat down and began pumping and for some reason this mother had the inclination to ask me why we were there. I began to tell her about Treg, and how his problems were mostly relating to him having down syndrome. I talked about what an amazing little boy he was, and what a special spirit he had. She began crying. And explained that although she was taking home her baby boy, she had twins. one of which was in the process of being tested for down syndrome. Mothers in the nicu have such a sweet special bond.

9. One of my favorite things we did in the nicu was a "Treg and mom update" everyday. Everyday my husband would send a lengthy text chain with an update. we would talk about tregs weight, what we did that day, any accomplishments he made, or set backs, and how i was recovering from labor and c-section. All the details we could think of, and our family loved it! If we skipped a day, we definitely heard about it!

10. This was the most common response. Take care of yourself. Shower, eat, sleep, get ready. Your baby is in such capable hands. A nurse once said to me "this is the most expensive, and most qualified baby sitting you will ever have." Thats when i finally stopped staying till 2:00am and coming back by 8:00am. It is true. Not only that, but its hard to truly be there, mind, body, and spirit for your baby, if you are exhausted. I often thought "well i would be way more exhausted if Treg was home and i was taking care of him." That is simply in no way true. When in the nicu, you dont nap when your baby naps, you just sit there, worried and restless. I honestly sleep 10x more now that Treg is home. So get a couple hours rest, take a shower in the morning, and be the refreshed supermom your baby needs you to be!

Thanks to all the moms who helped, and gave wonderful advise!

nicu impromptu photo shoot;)

first family photo

baby toes and pulse oxymeters

the only holding we could do during jaundice time

moments after ripping out iv

first bath in nicu

skin to skin

babies first selfie:)

tregs little space

tregs info/goal board

treg was in the nicu over christmas so we made our primary nurses stalkings and santa treg filled them on christmas

the day we went home

-Roxy Newton

-Julie Shaw

-Jaquelyn Vega

-Keeley Gonzales

-Melissa Miller

insta

-@tanasiat

@jedediahsjourney

@berks.life.with_3.21

@madelinebphotos

@steph_anie31

@samantha_and_ben_steed

@kinanoel

A letter to my son with Down syndrome

A letter to my son.
       One day you might wonder why you are a little different, and when that day comes I have written you this.
      When this earth was created long ago, God knew all the people he made would forget with time what heaven felt like. That we would  need a reminder occasionally, so we would be our best selves, and be able to return to heaven. He thought of all the possibilities. How could he remind everyone on earth, what their beautiful life was like up above? After pondering and counseling with his son, they formulated a plan. They decided to make boys and girls like you. They needed special people, that warmed everyone's heart. that could be the nearest thing to an Angel on earth. Son you are so pure, you are truly the closest thing to heaven mommy will ever know.

      I might have decided to finally read you this letter because you, yourself, want to know why you are different; or perhaps someone was mean to you, and you wanted to know why. My son, not everyone will understand you, maybe they are scared, or uncertain what it means to have Down syndrome, there are many misconceptions. It is our job to educate them with love. This may seem like a big job, for a little guy. But you were "fearfully and beautifully made" just for this.  You may notice people avoid you, and look away. Please don't be scared to say hello to these people in particular. They may not know it, but that hello might be the exact reminder they needed, that I mentioned earlier. There might be people that hurt your feelings, It is okay to feel sad. But I have complete faith you will do the Christ like things and show them unconditional love. I know you will extend to them forgiveness. Please know their unkindness is out of ignorance. The best we can do for these people is be open. They may have never met someone with Down syndrome. You may look different, and sound different than what they are used to. But you can let them know that different doesn't equal scary. Be brave little one, be open to others, let them feel that infectious spirit that everyone is drawn to. Tell them to ask questions. Be patient.
     Mommy is so happy to be able to have you as her son, and more proud than you could ever imagine. I wouldn't change a single chromosome In that perfect little body. I can't imagine how I ever got so lucky to have a daily reminder of heaven, but I promise to try my very best to live up to the standards to make it back to heaven. Just to be with you.