Sunday, October 16, 2011

Danielle Jordan Alfonso- 09/07/2011


One month and eight days... that's how long it's been since we were blessed with this beautiful baby girl.  The birth of a daughter.  The re-birth of a mother.  I've been wanting to tell her story but its so hard to find the words.  I have had so many thoughts and emotions over the past few weeks, and I've landed on one that I'm sticking with.  Joy.  Danielle has Down Syndrome.  The day she was born I felt like I had lost the baby I had expected for 39 weeks but now I see that she is EVERYTHING I had expected and more.  She is perfect.  She is beautiful.  She's a child of God.  Her newborn smell is intoxicating.  I breathe her in and she makes my heart swell.  Her beautiful almond shaped eyes pierce my soul.  God must think a lot of me to bless me with this special child, to mother and to love deeper than I ever could have imagined.  I look forward to the world that Danielle will introduce me to and the lessons that she'll teach me.  I am hopeful for her future, and I'll share with her in triumph at every obstacle that she overcomes.

Daddy was there to hold her tiny hand.

Danielle spent her first week and a half in the NICU.  She required oxygen to help her cope with the transition of life outside the womb due to a Ventricular Septal Defect (heart defect).  Her VSD was diagnosed during an ultrasound.  The Dr. told me that this was a "soft marker" for Down Syndrome.  We decided we didn't want to risk the pregnancy with an amniocentesis.  Here's a link to an animation that explains the VSD better than I can.

She's doing very well now.  She's eating and growing without requiring any medications.  Her Cardiologist says its likely that the hole in her heart will close on its own without the need for surgical intervention.

Here is the story of Danielle's birth... the best that I can tell it.
September 6th.  It was a rainy day.  My Uncle Doug was in town.  He was on what he called "baby watch," ready to take on the responsibility of caring for Emily and Justin when I went in to labor.  I had an appointment with my obstetrician that morning.  She "stripped my membranes," during a pelvic exam to see if it would get labor started.  I had this done during my other pregnancies when labor never came on it's own and it didn't work.  I didn't have much confidence in the procedure, but I was 39 weeks pregnant and I was so uncomfortable... real pain.  I'm sure my ribs where bruised from being so full of baby.  We drove home and it wasn't until I stepped out of the car that I realized I was in pain after the procedure.  I hoped this was a good sign. 

The rain was still pouring down so the kids and I spent the rest of the day cuddled up watching cartoons.  I started having contractions around 3pm.  I made dinner, bathed the kids and put them to bed just as I always do.  I put myself to bed around 11pm.  I woke up around 1am with painful contractions coming every five minutes or so.  I shook my sleeping husband awake after a half hour of moaning in pain didn't wake him... geesh!  We left for the hospital around 2am.  The nurse checked my cervix and I hadn't made any progress, I was still only a few centimeters dilated, the same as the morning before when I had the appointment with my OB.  I was ready for some pain relief by 4am.  My experience with my other pregnancies was that after I had the epidural my progress was very quick.  I told the nurse that I was going to take a nap and I would probably be ready to have the baby when I woke up... she didn't think I was serious.

I woke from my nap around 7am.  I was about 8 centimeters dilated.  The nurse said something like "whoa, she wasn't kidding."  She went to go let my Dr. know about my progress and by the time she came back I knew it was time to push.  

5 pushes.  That's all it took.  More than I had expected actually, Emily was four pushes, Justin was three... so naturally, I thought two would be the magic number... but this baby was BIG!  8lbs 7oz.  I am thankful that labor didn't wait any longer... my goodness!  My husband was a great coach.  My family was there for the delivery of our other children and they took some of the responsibility of supporting me.  The person I want with me the most is my husband, and as much as I missed my family, it was kind of nice that it was just the two of us... he had no other choice than to take the lead. 

 I have always believed that things happen for a reason.  Life experiences, people we meet, decisions we make, time and place... all with a purpose, propelling us toward our destiny along the path that has been chosen for us.  Tepeyac Family Health is the practice that I chose after I decided that the Army hospital just wasn't going to work for me.  It really was a shot in the dark when I chose the practice.  They were the closest practice that was covered by my insurance.  As it turns out, they are a faith-based practice.  Their mission is to treat the whole woman, body, soul and spirit.  I didn't realize then that that's what I needed.  Dr. Marie Anderson delivered Danielle.  I knew the minute they gave her to me that she had Down Syndrome.  I couldn't speak, I was in shock, it was like an out of body experience.  My mind went blank and my body felt numb.  The pediatrician confirmed my suspicion moments later.  I can't elaborate about how I felt during these moments after delivery because there were so many emotions and thoughts that I couldn't possibly make sense of it all.  Dr. Anderson helped ease my heart with only a few words and her presence.  She has truly been blessed with a healing spirit.  I'm not sure she knows how much she helped me since my mind had completely left me after delivery.  I'm looking forward to seeing her at my postpartum check-up.  I'll tell her how much she impacted me... I'm sure it will be a sob-fest, lol.


First day without the oxygen.  Yay baby!

Leaving Danielle at the hospital after I was discharged was probably the hardest thing I've ever had to do.  As we left the hospital after my discharge Emily saw a family in the lobby getting ready to bring their baby home.  She squealed "baby!" and approached the family to see, sharing in their excitement for this brand new baby.  It took every ounce of strength for me not to turn in to a puddle on the floor of that lobby.  I felt like it should have been our baby that she was squealing for.  I somehow kept my composure... that is until we got to the valet outside the hospital where we ran in to one of Danielle's nurses.  It was Debbi, she was my favorite nurse.  She saw that I had been discharged.  She gave me one sympathetic look, a look that said I'm a mother too and I know how you must feel.  My heart broke every time I had to say goodbye to Danielle but I have to admit that she was in very good care in the NICU... and so was I.  The NICU nurses were AMAZING.  They were kind, understanding, compassionate and comforting.  They were my therapists during the hardest week of my life.   
My babies will never know how happy I was to see them on this day.  I let my worries float away as we cuddled up to watch some toons.

Home, Sweet Home...

Finally!  Danielle no longer required oxygen and her IV had been removed.  She was eating, sleeping, peeing and pooping... all the things a newborn does best.  We spent a few days watching and waiting.  She was doing very well.  There were no more episodes of low oxygen saturation or signs that she needed further treatment in the NICU.  So why isn't there any talk about discharge?  I know that she had charmed her way in to the hearts of the staff in the NICU but she was mine, it was time for her to come home!!  I had to make a case that she didn't require treatment any longer and that she needed to be with her family.  Thankfully the neonatologist agreed.  We put the kids to bed that evening and left them in Uncle Doug's care while we went to get our baby.  It was around 11pm when she came home.  Although it wasn't the way I had imagined her homecoming, the kids faces when they found their baby sister the next morning where priceless, all lit up like on Christmas morning.


Raising a child with special needs may be overwhelming at times, I'm sure, but I'm making a conscious decision to live for today and enjoy my family to the fullest... I'm holding on to this joy!

Worry is not concern which would motivate you to do everything possible in a given situation.
Worry is a useless mulling over of things we cannot change.
Seldom do you worry about the present moment; the present moment is usually all right. When you worry, you either agonize about the past, which you should have forgotten long ago; or you agonize about the future, which hasn’t even come yet.
The tendency is to skim right over the present time. Since the present time is the only time you can live, if you don’t live it, you’ll never get around to living at all.
If you live in the present moment, you tend not to worry.
-Peace Pilgrim

Thank you to our families and friends for all your love and support.