Happy One Month Birthday, Sam!

October 28, 2014 One Month Old!!

I haven’t written anything for a while, though it’s not for lack of things I want to say.  More so, my mind has been racing with so many thoughts, but I’m having some difficulty organizing these thoughts into neat little bundles.  So much has happened since my last blog entry, namely, our little miracle, Sam Jeffrey was born September 30, 2014.  He is 4 weeks old today, and as I look at him peacefully napping on my chest, my heart is bursting.  My heart is happy, not just for this sweet dream of a baby we were gifted with, but also for the more intense love I feel for my husband, Jeff, and our two year old, Nicholas.  I didn’t think there was any possible way to love Nicholas more, but seeing how wonderfully sweet and compassionate he is with Sam, he just blows my mind every day.  I have heard some parents say they wonder how they will find room in their heart for the next child, and I’m wondering how there is so much space in mine to love Nick exponentially more.  He is a special soul, and as I have said before, I truly believe we were chosen for Sam because of his older brother.  Nicholas is a gift beyond measure.  As for Jeff, as any parent with a partner can attest, the love you feel when you see your partner caring for and loving your child simply multiplies when there’s more added to the mix! 

Before I write about Sam’s birth story, I have to begin with some background on Nicholas’ story.  We tried for a baby for almost two years, when we discovered that we needed some help with fertility issues, and Jeff had to have a surgery to reverse the effects of scar tissue from a double hernia operation blocking “the goods” from coming out.  Jeff underwent a 9-hour microscopic surgery to fix this issue and we then opted for IUI, Intrauterine Insemination, to conceive a baby.  The first attempt failed, but the second was successful, and low-and-behold, Nicholas entered our lives on September 24, 2012 via C-section, due to him being breech.  During this process of infertility, testing and surgery, my OB/GYN, Dr. L, was an invaluable resource of knowledge and support.  How many people can say they love their OB??  She helped our little miracle happen, and she was a loving and compassionate friend in the process.  Well, Dr. L moved to Atlanta, GA and I was sad for myself, but happy for her and this opportunity for her and her family.  Fast forward to January 2014, and Jeff’s surgery was, apparently, successful because we were pregnant again, ironically, without planning or intervention this time.  My new OB/GYN, Dr. M, treated me throughout my pregnancy, and she was the one to “break the news” of Sam’s diagnosis at 19 weeks gestation.  Since Sam’s diagnosis, as I mentioned in my other blog entries, we have found great support through the DS community online and we have met some local families.  Something that has struck me on this journey is finding out that 90% of prenatal diagnoses of Down Syndrome end in termination.  My heart breaks when I look at my son and realize some people feel he shouldn’t exist.  How can anyone think that Sam shouldn’t be here?  I have heard of so many other parents of kids with DS, throughout our country and elsewhere, tell stories of “professionals” encouraging termination, to “get rid of it and try again.”  I had some of these medical people let me know this is an option, but thankfully never “encouraged” it.  That said, termination was never an option for us.  Once again, I was blessed to have a compassionate and supportive OB/GYN, this time in Dr. M, who celebrated my pregnancy and the birth of Sam.

Sam’s birth story is a long one, but I’ll try to keep it short here. Sam was born on Tuesday, September 30, 2014, after a long first stage of labor that began on Saturday night.  Sam came a week early, and I will say, again, it was God’s blessing that Dr. L was on call that weekend and into Tuesday.  She does some per diem work for the practice, as her family and friends are still in the area, and she comes back occasionally to cover.  She was with me for my entire labor in the hospital, but had to catch a flight back to Georgia on Tuesday morning.  Dr. L had to fly back to Atlanta, and Sam was born a half hour after her plane was scheduled to take off.  While we were hoping to have both Dr. L and Dr. M there during Sam’s birth, how lucky were we to have my former OB, who I love, take us through my entire labor, and then my current OB, who I also adore, deliver Sam?!  It was the best of both worlds.  Because Nick’s C-section was due to him being breech, I was able to try to have Sam naturally.  I wasn’t progressing past 8cm, so we decided on an epidural before getting Pitocin.  That said, up until that point I felt like a rock star, breathing through contractions and staying quite relaxed, if I do say so myself.  In fact, when we got to the hospital on Monday evening, I thought for sure they would send me home, as I was feeling pretty good, and Dr. L confirmed I was 6cm and the nurses said, “She is way too happy and smiling to be 6cm!”  I have to attribute that to my hippy relaxation/hypnosis CD’s I listened to the months leading up to Sam’s birth.  I am a believer in the power of the mind!

I had “accepted,” for lack of a better word, Sam’s diagnosis and was prepared for what that may mean.  That said, I was scared.  I was worried when Sam was born and put into my arms that I would look at him differently.  That I would search his face for signs of Down Syndrome, and that his diagnosis would skew good feelings of his birth.  When Dr. M checked me and said we were ready to push, I was overwhelmed with emotion, and while the medical team prepared and gowned up for the birth, I sobbed in my blankets.  As Jeff counted my pushes, his voice cracked and I knew, though my eyes were tightly closed, that he was overcome and tearful, too.  Four sets of pushes later, and Sam was placed on my chest.  I could barely see his face through tears.  Happy tears.  Tears of relief that Sam was ok.  I searched his sweet face for recognition that I’m his mommy, not for markers of DS.  I was in love.  After Sam was taken over to a table to be dried off and warmed up, I said to my doctor, “I want to do that again!” She replied, “Most women don’t say that right after pushing out a baby!” I meant it, too.  Nick’s birth was special, of course, because we got him in the end, but this was the most amazing experience of my life.  There are no words to describe this “miracle of birth.” It IS, without a doubt, a miracle. I'm still in awe of what my body was able to do.  Super Woman is an understatement.

A friend who also has a child with DS recently described their little guy as “magic.”  I couldn’t agree more, as Sam has been a dream baby.  At the risk of sounding cliché, when Sam looks into your eyes, it’s as if he is looking into your soul.  There is something special about him.  A woman who met Sam yesterday described him as a “peaceful presence.”  It is so difficult to put into words what my children have added to my life.  I am just so excited to see how things unfold.  I’m still worried about Sam’s future and his health.  I can’t look too far ahead, as I feel overwhelmed with what may come, or how delayed his development and cognition may be.  I’m trying to live in the present and enjoy my baby, my little family.  

One month later, I’m wondering when it will sink in that I have two children.  Three years ago we weren’t sure if we could have kids at all, and now we have two.  Life is strange. Life is beautiful.  We are blessed.

A Letter to My Unborn Child, About the Ache

July 23, 2014

My dear little one,

We are in the seventh month of growing you, and as the time gets closer to meet you, I find I have this aching in my heart and in my body.  I ache to hold you, to smell your fuzzy little head and sweet baby smell.  I ache to see your face and who you resemble.  I ache to have those quiet moments together, just me and you, nursing and cuddling.  When I see other babies and hear their cries, I ache to hear yours.  

Ten weeks ago yesterday, I felt an entirely different ache.  My heart and my body ached then, too, but they ached with desperation and sadness.  When I heard the words, “Your baby has Down Syndrome,” my body doubled over with this hurt.  Through the next two weeks, my heart and mind ached with grief.  I lost sight of you, my sweet baby.  I saw only your condition, not my sweet boy, and you became Down Syndrome.  It’s all I could see.  I couldn’t talk about you without crying.  I couldn’t think of your big brother, Nick, without aching for the brother he would never have, the one I had dreamed for him.  I couldn’t tell our family about your condition because I ached at the thought of upsetting them.  I couldn’t read Nick’s silly book “My New Baby” to him, because it made me cry and hurt and wish for different.  I was seeing what I had lost, and I could no longer see you.  I ached for this unknown. I ached so much because I wasn’t thinking about YOU, I was thinking about this one piece of you.  Part of you, but not all of you.  

I’m not sure, exactly, what brought me back to you.  What brought you back to me.  What dulled that sad, desperate ache.  The support of family and friends, – Oh, they love you so much already! – the welcome we received into this new community of friends with others just as wonderful as you.  These helped the sad ache, I’m sure.  But, I think it was you who brought me back, feeling you kick, reminding me that you’re there, my sweet baby.  That it’s you, my baby, not a condition.  Down Syndrome will be a part of you, and will no doubt influence the amazing person you will be, but it is not all of you.  You’re MY baby.  You chose me for your mom, and for that I ache with joy.

I stopped crying and haven’t cried since those first two weeks after your diagnosis.  You brought me back to the wonderful ache of anticipation and eagerness to meet you.  Don’t tell your brother, but part of me is even more excited than I was when pregnant with him.  I didn’t know what to expect with Nick, but I know how it will feel this time, to hold my sweet new baby, and smell his fuzzy little head and have those quiet moments of cuddling and nursing, just us - what no one else on this earth will have.  The feeling of loving someone so entirely, perfectly and completely.  I know that ache well.  

I love you forever and always, 

Mom

The Diagnosis

The Diagnosis                                                                            July 13, 2014

At a couple days short of starting my 7^th month of my second pregnancy, I hear a lot of “when are you due?” and “Do you know what you’re having?”  My answer, always, is “End of September or early October. And, yes, we are having a boy.”  In my head: “Insert asterisk: * and he has Down Syndrome.”  Whether I choose to share this information or not depends a lot upon who I am talking to, and whether it flows into the conversation.  Side note, it never really flows into the conversation, but I sometimes add it anyway.  Why?  Maybe I feel the need to say it out loud sometimes, or just to emphasize that it’s ok and I’m not embarrassed.  I don’t know.  I’m still sorting out feelings and testing these waters.  

We are calling him Sam, for now anyway.  I withhold my right to change my mind at any point!  We are starting week 28 in a couple days and Sam was diagnosed with Down Syndrome at week 19.  The week previous, I was called into my OB’s office to be told the baby screened positive for DS for the quad screen blood work.  I thought nothing of it.  My best friend had a false positive for the same screen.  This was just a false positive, and the baby will be fine.  Regardless, in lieu of an amnio, I agreed to take another blood test, called MaterniT21, that tests specifically for Trisomies 21, 13 and 18, just to be sure.  This test is 96-99% accurate.  The wait would be 8-10 days, so when I had my routine OB visit 7 days later, I didn’t think I would get the results, so I told Jeff to go to work rather than joining me for the appointment.  Long story short, the results were in, and they were positive for Down Syndrome.  The room closed in. There were tears and “You’re not supposed to say that.”   I called Jeff as soon as I left the doctor’s office, and he told me to come to his work.  We drove next door to the Lowe’s parking lot and talked about this news.  I went home, rather than to work, so I could calm myself down and research.  I didn’t research.  I cried.  I baked brownies and cookies.  I took the dogs for a walk.  I cried some more.  I ate most of the brownies. 

Of course, one of the nagging thoughts that first day was, “Why us?”  But, being a Social Worker and having heard some horrific first account stories, as well as having some very lovely people in my life go through traumatic events and losses, I quickly realized, “Why not us?”  No one is immune to this.  I’ve never been much of a “poor me” type person and I don’t plan on starting to be one.  Going on nine weeks post-diagnosis, I must say I’m almost embarrassed by my initial grief.  And it is grief.  Grieving the life I pictured, grieving for the sibling my first born, Nicholas, won’t have.  But, I know what I went through is normal because I have heard from so many others who gave almost mirror accounts of my feelings and reaction.  Much of the grief comes from not knowing what the diagnosis means, and what to expect. Now that I have absorbed the diagnosis and have done some research, I’ve moved past sadness and I’m now more concerned with the unknown medical, cognitive and developmental issues that we may face.  I know I will have some more grieving moments throughout our lives, but for now I’m ok.  I just can’t look too far into the future, because then I worry, “Will he have friends? Will he ever have a wife? Will he go to school and work? Will he have serious medical issues?  Will I have to bury my child some day?”  But, for now, I’m trying to live in the moment.  Sam is growing strong in my belly.  He does have a muscular VSD (a small gap between ventricles of his heart), which has a promising prognosis, and hopefully will heal itself.  If not, he may need surgery.  Bringing Nicholas for shots hurts my heart so much, I just can’t think of possible surgery.  So, again, I’m trying to live in the moment and not worry about what I don’t know.  That’s not easy for me.

Yes, I’m past sadness.  I want to meet this little guy, after he is fully cooked, of course!  I’m so eager to see his little face, to learn his quirks and personality.  I’m so excited to see how Nicholas is with his little brother.  I like to think that God must think we are doing something right to bless us with this little guy.  Or, He thinks Nick will make a wonderful older brother, because he is already so loving and compassionate – the kid tries to kiss ants, for goodness sake!!  Or, maybe he was picked for us because he needs to teach us something.  I mean, look at me, Type A Planner, having to take a step back and NOT PLAN everything!!  I appreciate life and all the big and little things, but I most certainly appreciate those little things even more.  I am sure this appreciation will amplify as we get to know the newest member of our family. 

As I wrote above, I have this nagging feeling that I’m supposed to make some sort of announcement to people when talking about my pregnant belly.  But, believe it or not, Sam’s diagnosis is not constantly on my mind.  HE is constantly on my mind.  What will he be like? What will he look like?  But when pregnancy inquiries come up, I somehow feel obligated to tell people of his diagnosis.  Most of those I have told have had positive and supportive reactions.  A response I don’t appreciate, though I know is coming from a good place, is “He is still a blessing.”  Yes, of course he is.  I am the last person who needs convincing of this.  He is my baby.  I know he is a blessing more than anyone on this planet.  Not one part of me thought any differently before or after his diagnosis.  Yes, I have grieved what “could have been,” but I never once grieved having my baby. 

Jeff, Nick and I have met with a couple families who have kids with DS, and we have talked to a few others.  I know the value of not feeling alone in a situation, and so talking with other parents has been truly uplifting and extremely positive.  This has helped me immensely on this journey.  I have told a few people that the outpouring of support from the DS community makes me feel as if I belong to some sort of special, exclusive club.  And it’s pretty awesome to go from this negative, sad place to this place of love and inclusion and support.  I suppose that is what is prompting this blog.  To share our story, in case it helps someone else.  Life gets busy, but I am hoping to continue this and share more stories as our family grows and we find out more about our little guy, Sam. 

Thanks for reading :)

Lauren