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. 

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

Hello, my only one.

Its almost 7 a.m. I get up and sneak out before shift change. I don't like shift change.
"Baby is on high flow oxygen, he struggled last night to..."
 I tune out The nurse who is informing the one replacing her for the day, as I walk out towards the elevator. I can't do that part. I cant listen to my baby's problems being listed, its desensitizing. It hurts my heart a little more when each complication is stacked up like that.
"For some reason we are losing baby's vitals, it seems with every contraction, his heart cant sustain himself. Hold on just one minute."

Literally with in 5 seconds there is a doctor digging up inside me for the pill that was inserted to soften my cervix, but actually sent me into labor, while another nurse is giving me a shot in the arm to stop the labor, another nurse is frantically searching for baby's heart beat on the ultra sound, another was feeling around my stomach trying to get an idea how strong my contractions were. I look over to Jordan, to see him taking pictures... yes pictures. Now I cant stop laughing thinking about this moment. I guess that is the one thing I asked him to do. (to his credit little did I know until later he was mending a broken heart watching baby flat line every few minutes, I was too focused on my pain to notice how often that was occurring) Then a fifth person walks in.

 "Hi Taylor, my name is Dr.Smith, I'm the chief of surgery here, and I wanted to ask, well not really ask, but kind of tell you that we will be taking the baby by c section. He cannot survive the strong contractions, at this point his heart is flat lining every single time, we are going to have to take you right now. Please sign this consent for emergency c section, please state here you have no living will, please initial here that you understand the complications of this procedure, and here that you understand the side effects possible with the epidural"
Jordan and i have a tendency that we have developed lately. We try to make a little too light of the situations we have been given. It seems to just break the tension in the Dr's offices, delivery rooms, operation rooms, etc. So when we are in the delivery room cracking jokes it just seems to make the nurses and doctors a little more comfortable. Doctors often pause and look at us after breaking news, ready for a melt down. We remain calm, and they always say how incredibly well we take things....only because we like to break down in private, pray, and regroup. So while in surgery the doctors were still cracking jokes, knowing now that, that is the atmosphere we prefer. but as they continue joking around with me, i notice my Jordan is still not in the o.r like he is supposed to be. I begin to panic, did they forget about him? I must have asked the Doctors 3 times where he was before he finally showed. He came in the room so handsome and scrubbed in. They had the separator up, but i could see their shadows, i could see hands moving and cutting, so i look away and at Jordan. My upper body was almost convulsing and my teeth were chattering. My body was going into shock. "Tell me a story" That's what my Jordan always says when he notices me being quite, or can tell I'm nervous. So i told him a story. Then of course i started singing some kanye. mid song i hear a little whimper. Jordan is taking pictures because i am not allowed to see my sweetheart, he is rushed immediately to nicu through a window in the o.r. I see a picture of him and just cry, he whimpered, i heard him. He will be okay.

Our days have become a blur of tubes, De tangling wires, machines, lights, and mask. Our hands and arms are rough, chapped, bleeding, and scabbed from the constant scrub down to get into the nicu. The monitors are my obsession. I get a swell of pride watching baby's numbers be right on track, and his breathing exceed expectations. Then I get a deep heart ache, and anxiety watching those numbers plummet. We may never be home at this point. I let my pessimistic side take over. But then he does it. He looks at me and reminds me I'm there for him, not to hear the constant beep of monitors. He brings me back to life when I see his face, he has this light inside that makes everything right. And when I see him I don't see all the problems, I don't see a baby connected to a million wires, or a preemie, and especially not a baby with down syndrome, in fact, most of the time I forget he has it, I just see my baby. It isn't weird, it isn't awkward, I'm his mommy, it is natural, he is mine. It is the purest form of love.
Jordan and I get to watch a living breathing miracle every single day. We were sent to a hospital out of state so baby could have the best possible care, and surgeries available for that perfect tiny heart.
"Did you see the Eco? It was truly amazing."
 Casey, One of Tregs nurses from the late night of his birth had been keeping tabs on baby, in fact, a lot of nurses have been, he has collected quite the fan club here at the nicu.
I looked up at Casey as I was hanging up my scarf and coat to see him grinning ear to ear.
Jordan and I run into baby's room in the nicu.
Blake is there.
Blake is our favorite nurse, with a very dry sense of humor,  and a secret heart of gold. He is Tregs number  one fan, he would never admit it, he wouldn't play favorites;) but the way he looks at him and cares for him is one of my favorite things to see.
"Did you get the results from the Eco?"
"Well....not officially...but.."
"okay ya not officially but unofficially, off the record...?" Jordan asked
"everything looked awesome....everything."
I cry. Today is the new best day that there has ever been.
Later on we get the official word from the nurse practitioner that every single initial surgery the baby needed is now unnecessary at this current point. He wont need surgery for quite a while.
God is out there, he heard the hundreds of hundreds of prayers for our little one. He decided not just to make our baby healthy with time, but to give us a miracle, there is no other way to describe it. Our angles heart is going to be just fine.
Treg still has a long way to go till we are released, some to do with having downs, some to do with being a preemie, but would i trade this for anything else? If its not him, no thank you. Ive got my angel.