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Guest Mama – Valentina

This week I am honored to introduce you to Alexandra.  She is a beautiful mama who reached out to me a few months ago.  Her baby girl Valentina was born with Down Syndrome and unfortunately a lot of other health issues.  Alexandra hasn’t been able to share her story completely yet, until now.  I am so grateful that she trusted me to help bring Valentina’s story to you. 

Not many understand what you feel. Everyone feels something different when they have to say good-bye to their baby. No parent should ever have to bury their child, but sometimes you just have to.

I was very much jealous of the new moms, having their baby’s around the time Valentina was born. It did not seem fair at all. They give birth, they have visitors at the hospital, they go home, they take tremendous amounts of pictures of their newborn. Social media made it worse; you begin to envy them. Then you have to learn how to turn away from it or look at it in a new perspective. I do not remember when I stopped being jealous of others, but it did happen without me even realizing it.

My first time being a mother, was being a mother to a sick child. I believed we both suffered, but I suffered more…because I had to witness what my daughter endured. A baby, a small baby, after one day of being old…has surgery. The next surgery happens forty-eight hours later, an emergency. surgery at that. I remember why that happened. Ugh. The third surgery follows a week after that. Only one week with no surgery, but of course there were obstacles. Your newborn has to be transported to the children’s intensive care from the NICU, because they find blood clots. A few days later…machine becomes faulty, causing your baby’s heart to stop and having to be revived. The scariest phone call at six in the morning ever. I forgot I was recovering from a caesarean. That week goes by, but the beauty of that week, was seeing my baby open her eyes again after so long. Understand she is incubated, and under heavy medication. Fourth EMERGENCY surgery, we were told the chances are very very very slim. I honestly believed that when the doctor left the operating room, she was going to come back with the worst possible news ever, but no! I got another day with my baby. Surgery five comes along to finish up surgery number four work. A few days after that reality sets in. I learned within a one week time span, my daughter being incubated, was her being on life support. If she were to be off it, her heart will slowly stop beating. She was living because of a machine, the machine was assisting her. She was strong through all that though. My daughter did fight very hard, but at the end I felt as if she were fighting for me and her father. Fighting for us to realize that she is meant to be with our God. Those five weeks we had her…her father and I kissed her, hugged her, held her, smelled her, washed her hair, combed her hair, read her books, played her music, told her stories, and always told her we love her. I hardly ever left her side and if I did, I felt guilty.

I had to find a new strength within myself that I never believed I had. In doing so, I felt the dedication and determination to still provide the best I could ever provide to my baby. Even though she was incubated, she had a G-tube in her stomach for her feeds. She was being supplied her nutrients and TPN, but there was an occasion or two she was able to have breastmilk. Those were one of many happy moments. I pumped everyday, up until the very last day I had with my sweet girl. In five weeks I was able to store 498 ounces of breastmilk, which I donated to Mother’s Milk Bank in MA. There were many times I wanted to give up, because i just knew she was not going to have my milk, but I could not find myself ultimately stopping. Pumping, was my hope that my baby will come home. I have endured the horrors of pumping. They promote the beauty of breastmilk, but not the hard work that comes along. Being a milking cow was not easy, but it was my hope.

Five weeks, thirty-seven days of happiness, sadness, and stress. Will I do it all over again? Yes, yes I would. I had my baby in my belly for thirty seven weeks. I saw my baby. I held my baby. I kissed my baby countless amount of times. I learned a lot in those five weeks. My daughter taught me her strength, and I had to be just as strong. I tried not to break down in front of the nurses or doctors, because I simply did not want to be bothered with a social workers. So much occurred in such a short amount of time, I honestly cannot believe I experienced it. I admired my husbands strength too. He was there day and night, and still working his full time job. I know he was exhausted, but he loved his little girl. I know he loved her more than me, he would not admit that of course. My husband and I married AFTER our daughter passed away. We felt we needed to be united as one, and be a strong family. We were told many times, many of those who are put in our situation, do not make it. My husband and I surround ourselves with love, and we made sure our sweet girl knew of it.

We both learned from the beginning we had to be strong and fight. We had to have faith. It is so hard to have faith when you cannot see it, but if you allow to fall back on God, faith will always be there. God never left our side; we may have here and there…but He never left our side. He guided us every single step of the way.

I mentioned my husband and I had learned from the beginning to be strong and fight, well that is because we learned while I was still pregnant at twenty-two weeks that our daughter had a heart condition (AV: atrioventricular canal) that required open heart surgery, we also learned that she had Down Syndrome, which is very common for these babies to have a heart defect. I honestly hated myself after. I only say this, because when I learned of the results, I became selfish. I prayed for the doctors medical report to be wrong, and that my baby was going to be healthy. I was scared while being pregnant. The society we live in is so scary, I did not want people to mistreat my girl. I automatically wanted to protect her. I thought me knowing of her having Down Syndrome was going to mentally prepare me, instead it taught me, even while being in denial, that I had to be strong. I had to enjoy my remaining weeks of pregnancy with my baby. I could not let the countless amount of appointments bring me down. It was almost taking a toll on me, that I took control and cancelled so many of them! Of course my OB had to explain the what if’s, but I knew she trusted my instincts.

Just know that we (family and friends who knew what was going on) prayed hard for our girl. Heart remained strong, her having Down Syndrome was not a problem, she was born with a completely different condition that is apparently also “common “ in Down Syndrome babies…imperforate anus…no anal opening. At first I thought it was funny; I tried to have a sense of humor during the difficult times. Her having this condition, caused the many surgeries. At first everything seemed okay, but something else was wrong.
My daughter became septic. When exactly? I do not know.
Her heart remained strong.
Down Syndrome what?
Imperforate anus what?
Hello sepsis…Good bye sepsis.
At the end of it all. There was a miracle. It was not what I wanted exactly, because I wish my baby was here on earth with me.
Her soul was too beautiful for this earth.
She belonged with God.
I felt her soul was no longer here on earth, when she took her last breath in her parents arms.
Yes, my husband and I decided that enough was enough.
My baby was tired, and she fought hard for me, her dad, and herself.
It was time that we all had some peace. It hurt for a very long time, and everything felt like a dream, and sometimes it still does.
What can I say? I am human, you think these things. You question our God, and then you feel guilty for questioning Him; well at least I did.
My God was by my side anyways. He knew what I was going to say or do.
He wrote both our stories.
My daughter’s story is beautifully written.
I will still cry here and there, like I said I am human.
I will always love her. I will always miss her.

I am currently pregnant with her little sister. I was scared at first, but I am also leaning to enjoy this pregnancy day by day.
That is another day for going into details about being pregnant after infancy loss.

Valentina Faith Mejia. My favorite girl.
I will always celebrate you.
I know your presence is around me always.
I love you.

-Alex

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Guest Mama – Bridget’s Story

This week I’d like to introduce you to Megan!  She has the most adorable baby girl who is getting stronger and stronger each day!  I am so glad she was willing to share her story with all of you!

img_5006Our precious girl, Bridget Regan, was born December 5, 2016, but her story began long before that. I was just out of my first trimester when on June 30, 2016, I got a call that would forever change my life. I opted to have NIPT (non-invasive prenatal testing) for no other reason than the test was 100% covered by our insurance. I can promise you that had this test not been covered (it can be quite expensive), I would not have had it done. Without giving it much thought, I figured the test would completely rule me out as a carrier for any kind of disorder or disease; I literally never gave it a thought that my baby may come back with an abnormal test result. Early that June morning, I got the call from my OB that my NIPT testing had come back as high risk for Down syndrome. Even with this news I figured, “oh ok, but what does ‘high risk’ really mean? And I’m sure these test results have false positives all the time…” As the news started to sink in, I scoured the internet for stories of false positives. There were a few, but I quickly realized that the new NIPT testing was far more accurate than the Quad screens of days past. A knot grew in my stomach and in my throat as the reality of what I may be facing quickly hit me like a brick wall. My OB scheduled an appointment for me at a Maternal Fetal clinic to do a full body scan that day.

img_5011I remember the feel of the leather of the couch in the genetic counselor’s office. I remember what she wore, what I wore, the art on the wall, the carpet underneath my shuffling feet, the path down the hall we walked as I felt the tunnel vision closing in on what she was about to tell us. Our baby had a 91% chance of having Down syndrome. She asked us a myriad of questions that no new parent wants to face – did we know anyone with Down syndrome, any history in our families of genetic disorders, and finally the very worst of all – how would we proceed with this pregnancy. Until that question came, I wasn’t listening to all the words she was saying. It’s like I could see the words coming out of her mouth but my heart was in a tailspin of emotion and my mind was trying to catch up with my heart. What did she mean what would we do? This was our precious baby and though the news was heavier than I could have ever imagined, there was no “option” for us. This life was ours to raise and protect to the best of our abilities and not to be discarded based on a preconceived notion of a diagnosis. Our baby is more than worthy.img_5002

Following that conversation, we had a full body scan ultrasound where a heart condition was discovered that all but confirmed the diagnosis. Then a brand new fear crept in as they explained that our baby’s condition was so severe that it would require surgery within six months of life. We’ve been closely followed by cardiology teams since then and Regan is expected to have surgery sometime in March.

Our sweet Regan has now been in our lives for exactly two months and suddenly I couldn’t imagine a world without her. She is gaining weight like a champ and her sweet disposition makes me so proud to call her mine.

img_5050Throughout this journey, I’ve had the pleasure of following other mommas and families of these precious children with Down syndrome. What started as a scary diagnosis opened a window into some of the most supportive and compassionate people I’ve (virtually) met. These first few months with Regan have been such a joy but certainly not without their difficulties. I imagine Regan’s future will be the same: filled with happiness and some stumbling blocks, but I can’t wait to see what it holds for us. The fear of the unknown is washed away when I look into her precious blue eyes and know she’s already changed my heart forever, and I know she’ll change the rest of the world’s hearts too.

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Therapy Update

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Sitting in protest

This past week Jana has been making her therapist work!  She has not been cooperating and honestly, has been throwing a few tantrums here and there.  She has officially started army-crawling on her own pretty consistently.  Before rolling was her way to go…literally rolled EVERYWHERE!  But now she has realized that she can just push herself forward a little and get where she wants faster.  What does this mean for therapy?  We now instantly are forcing her to work on crawling on her hands and knees!  She is NOT happy about it.  Her therapist explained it to me like this, Jana’s mind has figured out first how to roll and now how to arm crawl.  In her head she knows how to get where she wants, shes good at it, and doesn’t need to change what she’s doing.  Prior to her army  crawling on her own, she didn’t mind us working on her hands and knees.  I find that so interesting!  As soon as her mind clicked and learned one task, she now fights moving forward to learn the next steps.

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Refusing to move!

So here we are.  I am now forcing her to work throughout the day.  I have been getting a LOT of bad looks and some screaming.  But she’s doing it.  Still in her shoes all day…but now we’ve added a pair of high top Converse…cause well they are cuter 🙂  I’ve posted a few videos from her therapy.  For those of you who still think she always so sweet and quiet…you should have a look!  lol

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Why Mother?!

 

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With an Aching Heart

FullSizeRender-2Yesterday heaven received a warrior.

I’d like to introduce you to Walt.  He was born with Down Syndrome and a congenital heart defect.  He underwent countless surgeries and procedures to keep his heart and organs working. He spent way too much time in the hospital and not enough time being able to just be the precious little boy that he was.  He endured so much pain and struggles but with his loving family by his side, he kept fighting.

Yesterday, just 3 months short of his first birthday, Walt went to his eternal home. This past weekend he was sent home to pass in peace. Yesterday morning he FullSizeRender-3let go in safe in his mamas arms and ended his pain.  Now instead of pain and struggles, he is joyously in the arms of our Lord. No more pain, no more tears, no more surgeries, little Walt is finally at peace.

Since I read the news yesterday on Walt’s Instagram page, my heart has truly ached  for his family.  Today they awoke with a part of their heart missing.  Though they are at peace because they know his pain is over, it doesn’t mend the hole that I’m sure they are feeling.

I’m not just sharing this with you to break your heart. Many kids face these same struggles Walt faced each day. Jana was born with a congenital heart defect. By Gods grace she has not needed any surgeries, but that doesn’t mean she is forever in the clear. So many tiny lives are taken away sooner than their parents were wanting, but that doesn’t mean their lives weren’t worth it!  Some people feel that this is reason enough to abort Down Syndrome babies. BecauseFullSizeRender-1their lives might not be as “fulfilling” as typical children. I can pretty much guarantee that Walt’s family wouldn’t trade a second of his life to insure they had a “healthy typical child”. I’m sure they will cherish ever smile, every snuggle, every tear that they shared with their little warrior. Even though his life was short, it was worth it!!

For the past year Walt’s family have set up a fund to help other kids facing the same struggles as Walt. They’ve helped other families who are watching their little ones struggle.  They made sure Walt’s life had a purpose and that they were able to share Gods love with others. I encourage you to visit their site. Take a look at more photos of little Walt and see how much God has blessed this family.

Warriors For Walt

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Sleep in peace sweet little Walt

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New Shoes

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So today I purchased these lovely shoes for peanut.  Even though she has literally 15-20 pairs of adorable, stylish shoes (that she hardly ever wears truthfully) sitting in her closet, I had to go purchase these plain white stiff high tops.  They obviously scream baby orthopedics and I’m sure many families purchase these for their little ones.  They are just not our style.  So why did I buy them?  Here’s why…

On Monday at physical therapy, Betty was going over her progress again with me.  We are focusing a lot of getting her to army crawl consistently but recently she has been getting up on all fours to try to crawl on her own!!  She is also been trying to pull herself up not only to her knees (like we had been working on) but also to full stand!!  Every time she does it she gets so proud of herself.  Its so awesome!!  Because of this, Betty suggested I purchase high top shoes with laces to help her little ankles out.

FullSizeRender-1Here’s the issue: typically when your child starts walking, the last thing that is suggested is putting shoes on their feet that will prevent foot movement.  Typically we them to feel natural and allow their toes to move and develop as they walk.  Which is why the moccasin shoes are such a hit (that and the fact that they are pretty cute)  Barefoot is always best!  Kids like Jana however, often have poor muscle tone in their feet, therefore, they will often curve their ankles and even walk on the sides of their feet instead.  Betty informed me that all of her children she’s worked with who have Down Syndrome have some type of issues with their feet.  Currently, Jana has a good arch (flat feet is pretty common), she does not have a wide gap between her toes (surgeries are often needed to help align the feet better) her feet naturally point up and straight the way typical kids do (pigeon toed)  So why worry about the support now?  To hopefully help prevent her from needing braces as she gets older.  This support now will help her feet stay in place the way they need to and allow her ankles to get stronger as she continues to develop.   FullSizeRender

The plan is to have her wear them throughout the day.  When I am working on her standing, when she is trying to crawl, when she is napping!  All this time will allow her body to one get used to the weight of these bulky shoes, and also, keep her feet in the correct position.  Truthfully so far she is not a fan of them.  I’ve had them on her now for 30 min and she hasn’t stopped pulling at them or trying to eat them lol!  It took me about 5 min to put them on her because she kept pulling away!  I’m hoping the more she has them on, the less of a struggle that will be.   IMG_5474

So for now, I need to put away her adorable squishy Vans, her soft leather moccasins and her tiny little ballet flats.  She will be rocking these and I’m sure will be looking as cute as ever!!

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Honesty Time…

Ok…I’m going to be perfectly honest with you guys, there are times that I hate Down Syndrome.  Yes, that sounds mean and harsh, but let me explain.

I LOVE every single bit of Jana.  I love who she is because of having Down Syndrome and given I choice I wouldn’t change any bit of her.  But there are things about Down Syndrome I just really dislike.

  1. I hate how hard I have to push her and work with her to accomplish things most kids do without thought.  Everything seems so much harder for her and I just wish she had a break from that once in a while.  I hate that often times when she just wants to play and be a baby, I have to push her to do her therapy.  She gets mad and upset at me, but if we don’t do it, she’ll get even more behind!  I just wish she had a break.  That things could just happen for her naturally like “typical” kids do.  I know that this struggle with make her even stronger, but as a parent, we do try to make life easy for our kids as much as possible.  The world makes it hard enough on them as it is, why add to it!
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  2.    I hate being up with her all night and seeing how exhausted she is, but can’t sleep.  Last night alone she only got 2 hours sleep before 5:30 am.  That’s not good for her!!  That can’t be good for anyone.  But she does it.  Wide awake and happy…but extremely tired.  No matter what I do, I can’t figure out a way to help her sleep better.  Even with the sleep study we have scheduled in November, we still have a chance of being in the exact same situation.  Even though Jana still is decently happy through the day, the lack of sleep is deeply going to affect her overall development.
  3. I hate how people ask me about her milestones and then ask, “Is it normal for them to start doing that so late?”  First of all, THERE IS NO NORMAL!  All kids are different and develop at different times.  There are averages, but those are not set in stone.  Have you ever had anyone ask you if your “typical” kids were normal?  I sure haven’t!  Just like each typical child is different, each child with Down Syndrome is different.  Down Syndrome does not come in levels or degrees.  It just is and it affects each child differently.  Jana is exactly where SHE is suppose to be.  That’s all that is important to me.
  4. Lastly, I hate how I don’t know how to dream for her.  For each of the big kids, I can picture what they will be as adults.  Jojo will graduate from Art school and work at Pixar or Blizzard creating video game art.  Mason will go to some crazy IV League school and major in Mathematics or Engineering.  I still think he would make the perfect Sports Agent.  He loves sport statistics and money…perfect combo!  Jaylen will go to culinary school.  Get a business degree and open up a bakery where she will hire me. (She tells me that all the time)  They will each get married and have kids.  Drop them off to us for the weekend so they can get a break 🙂  Its easy to picture it all.  But how do I dream for Jana?  I can see her grown up, going to school, college maybe, being a beautiful girl.  But I don’t know how to dream big for her!  I want to see her married, having a career, being independent.  However, I’m realistic in knowing, those things just might not happen.  Down Syndrome takes that away.  Instead of pushing her to be independent and growing up to not need us, we have to somewhat teach her that she will always need help.  We will have to help her learn that she might not be able to reach the dreams and goals she has set.  But find new goals and dreams that are suited for her.  One day I might have to explain to her that its not a good idea for her to have children.  That she might not be able to live alone.  That there are just some things she will not be able to do.  Just thinking about those conversations crushes me!  We want our kids to strive to be the very best they can.  To reach for the highest star and not give up!  To tell a child that their dream just isn’t doable…that feels so harsh!

I’m sorry that this post seems negative.  This is suppose to be the place where I open up and share.  So this is what’s been on my mind.  Down Syndrome has opened an amazing world to us.  I wouldn’t change that experience.  But having Down Syndrome takes away so much from Jana too. DownSyndrome.1[6]

 

 

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Pulmonary Specialist

Yesterday Jana finally had her apt with the Pulmonary Specialist.  This is the guy we needed to see to get the sleep study referral.  Which we did!  Yay!!  But let me back track a little…

We started our day in San Diego…we took the kids to Old Town for the first time.  I used to go there all the time when I was little and thought it could kill a few hours.  They liked it…but I do have a 15 year old now.  He wasn’t all that impressed.  Peanut loved it!  She always loves being outside…but since we live on the face of the sun, she hardly has that chance.

Her apt was at 2:00 at Rady’s.  It was our first time there so we saw a PA first and then the doctor.  We had to fill out a questioner about her.  What a big slap in the face to remember she is adopted when you have to write Unknown on almost everything!  I guess that’s just IMG_4921part of the adoption problems.  Anyway, they instantly agreed that a sleep study would be helpful because Jana has some issues.  First, she has bad blood circulation in her legs.  There is nothing that needs to be fixed but if she is still for a while her legs do turn slightly purple.  I bet that explains why she is constantly moving in her sleep.  Second, she snores!  This could be a blockage in her airway or she might not be getting the oxygen she needs.  (And obviously the Down Syndrome itself is a reason to do the study!)  The doctor went over our nightly schedule with her to try to see what can be changed.  His diagnoses….we hold her… A LOT!  We hold her to rock her to sleep and apparently that is not allowing her to learn how to put herself to sleep.  So we IMG_4923hold her too much…*sigh*  I admit it, we do hold her quite a bit.  And yes, I probably over confiscate for the fact that I didn’t have her during her first month.  And Daddy loves his time with her before bed because he finally gets to cuddle with her.  The doctor wants us to time ourselves before we pick her up.  1 min, 2 min, 3 min, and so on.  Yes, she will cry…and we wait 😦  Honestly, not sure how well this will go.  I was never able to do this with the other kids…and when she starts crying…she screams!  She loved the doctor though and enjoyed everyone telling her how beautiful she is 🙂

Last night was HORRIBLE!!  She was almost awake literally all night!  After being outside all day in the beautiful San Diego weather and not taking her nap, we thought she would sleep like a rock!  No such luck.  It was literally the worst night I think we’ve ever had.  She was awake way more than asleep.  No IMG_4952matter what we did.  She just seemed uncomfortable.  As soon as we would get her to relax, she would wake up again crying.  This morning at 5 I finally gave in and had her come in bed with us.  Its pretty much impossible for her to sleep with us.  She moves WAY too much!  But apparently being in bed with mama and daddy is super fun!  She was laughing and playing with us.  Yes, it was cute and we were playing back.  But we were exhausted too!!  How she wasn’t I have no clue.  Around 5:40 she finally crashed.  It is now IMG_495410:30 am and she is still in bed!!  Its almost like she pushes her little body to the point of exhaustion and then just crashes.  Unfortunately, we don’t have that luxury to sleep in every morning!  Praying we can get this sleep study done soon!!!