One year ago today...

     My dearest Natalie. Today you are celebrating your 1st birthday. What a wonderful year it has been. I remember every detail the day you made your debut. Nothing happened the way we planned it. At 11am, when mommy was supposed to be in the OR, the lead anesthesiologist was on her 7th try at getting my IV in place. I almost passed out, TWICE!  And when she said that she might have to put the line in centrally (in my neck), I was ready to walk out. Daddy claims he wouldn't have let me leave, but I sure would've enjoyed seeing him try to stop me!  You will quickly learn, stubbornness runs maternally & paternally for you...good luck with that!   

  We knew well in advance of your birth that you had a complete AV canal defect and you'd require open heart surgery, we just didn't know when surgery would take place. Your cardiologist reported, "she could need it immediately or she could go 3 or 4 weeks before requiring surgery. We just won't know till she’s outside the womb".

    On January 28^th 2011, Daddy was the first to have a glimpse of you, besides all the medical staff, mommy had to wait till you were checked out by the NICU team.  You scored a 7 on your first Apgar, and an 8 on the second. Your team of doctors & nurses were most pleased with how well you were maintaining your O2 levels, so they let Daddy carry you across the room, to the surgical table, to meet me. You were so peaceful swaddled in your blanket & hat.  You looked like one of your sister’s baby dolls. I had him hold you close enough so I could kiss you and breathe in your new baby smell, had I not been tethered to the operating table I would have scooped you up and never put you down.  Once my O2 nurse blotted my tears, of pure joy, away, that's when I noticed. You had distinctive folds in the corners of your eyes and the skin on the back of your neck appeared full. Your features were not prominent, so I doubted my suspicions. The thoughts of "does Natalie have Down Syndrome?" made my heart beat extra hard and I felt as if all the blood had exited my body, I felt cold and shaky throughout. I whispered to your daddy "do you think she has Down Syndrome?” he glanced at me and shrugged his shoulders and immediately readjusted his happy gaze back to you. The NICU team only gave us 2 minutes to enjoy you before they whisked you away in a little incubator. That's when the tears of fear started flowing, fear of the unknown. Were you going to be ok?  Were you going to be taken to A.I. DuPont Children’s Hospital?  Did you have Down Syndrome? If so, would you be high functioning?  Would you live with us forever or would you move out with friends or a boyfriend?  Was I strong enough to be the mom you needed me to be?

   Once I was settled in recovery, we immediately powered up our phones to share the happiness of your birth, many people (Mumsie, pops, gram & Kelly) were just as concerned, as your mommy & daddy were, about your outcome. We were thrilled to say that you were in stable condition, that news spread like wildfire!  When the Neonatologist walked in to our room, I knew why he had come. He looked as if he was carrying the weight of the world. As he talked about your heart defect and how along with that, sometimes there's a chromosomal abnormality. I just smiled and said "yeah, I thought she might have Down Syndrome. I just wasn't sure.”  He smiled back and appeared relieved that I wasn’t going to have the reaction he anticipated that I’d have.  Once the doctor had confirmed our suspicions, daddy and I took a moment to process the info.

      Since you were in the NICU, I wasn’t admitted to the post-partum floor, instead I went to the high-risk OB floor, as there are no babies on that unit.  It felt like an eternity for the nurse to do my assessment, all I wanted was to visit you in the NICU.  It had been several hours and I was aching to hold you in my arms and have snuggle time.  Sadly, I had to wait for the rest of the spinal block to wear off, go for a walk around the nurse’s station and wait for escort to bring a wheelchair.  I remember the ladies at the NICU desk were not friendly and there was a strict scrub down process before we were allowed access to the nursery.  Once we navigated the maze of incubators, we finally reached our destination.  You looked so cozy.  You were calm, quiet and settled.  And I couldn’t wait to snatch you up, un-swaddle you and hold your bare body against mine.  I wanted nothing more than to try and nurse you.  Since your Neonatology team whisked you away from our OR so quickly, they wrote your name down incorrectly.  You were listed as “Nathan”.   Naturally, your NICU nurse thought you were a boy and she admitted she was quite a surprised and confused when she changed your diaper!

    During your, much shorter than anticipated 30 hour stay in the NICU, it seemed as if the staff interacted as little as possible with us. It was as if they were afraid to mention the words “Down Syndrome” or “Trisomy 21”, fearful that a meltdown would ensue.  No meltdowns here.  Just fear of the unknown, panic about your potential needs and anxiety about our future together.

    Here we are.  Exactly one year later.  As I rock you to sleep and breathe you in, I can’t help but think of the movie Home Alone.  Specifically the scene where Macaulay Culkin goes outside in the dark to announce to the world “Hey, I’m not afraid anymore.  Did you hear me?  I said…I’m not afraid anymore!”

      My dearest Natalie, I'm no longer afraid.  I'd like to think that this is the best gift you received today. Happy 1^st Birthday Love Bug!

Bath-Time

  Firsts are happening all day, everyday, all around the world.  But when a first happens with a baby, it's considered a milestone. When you’re the parent of a child with special needs, milestones don't come easily.  They require determination, hard work, tears and hours upon hours of therapies.  Often we are so elated that our child has reached a milestone, that we want to scream it from the rooftop; and while we are up there, we may as well make it a party. I'm talking fireworks, champagne, dancing and stogies. Since none of the above are acceptable forms of celebration by an 11, almost 12, month old, splashing will have to suffice.

   Typically, bathing Natalie is laborious and exhausting. You name it, we've tried it.  Sponge baths, baths with mommy, baths with sister, shower with mommy, bathing in the kitchen sink, bathing in a bumbo, bathing lying down, bathing sitting up.  No matter which way I bathe her the end result is always the same, she is in tears and I'm as soaked as she is.

  This evening bath-time ended the same as always, only because splashing is the new celebrating. Natalie celebrated...hard!  I'm talking wet floor and soaked mommy, daddy & sister.  Fortunately, Hannah needed a bath so we tossed her in the tub, too. What separated this evening’s bath-time from previously dreaded baths?  Natalie's awesome physical therapist, Karen.  She and I have been discussing our tubby-time drama and she came up with the most simplistic solution. We are forever grateful, as I never would have thought this could be the answer to our prayers. 

   Although there was no party on the rooftop, there was plently of clapping, cheering and splashing.  I'm contemplating busting out the champagne now that the girls are in bed:) 

P.S. the only tears shed by Natalie were the result of her playtime bath-time coming to an end.

Croup & Craziness

This post is Rated-R do to the use of foul language.  Enjoy.

    Natalie had recently finished a round of antibiotics, as in 4 days prior.  She always battles nasal congestion and on several occasions I have whisked her off to the pediatricians office when it wasn't necessary.  But on January 2nd, Natalie awoke with a barky cough and wheezing in her chest.  She sounded like a cross between a seal and a yippy dog, you know the type.  The little pipsqueak of a dog that you can't see in the car you pull up next to at the pharmacy but as soon as you step out of your vehicle it's at the window barking yipping at a decibel that would make one's ears bleed.  Thank goodness Natalie's bark wasn't that high pitched!  Either way, it didn't sound good.  Leave it up to one of my kids to become ill when the pediatricians office is closed.  I cringed at the thought of taking her to the ER, knowing that every other parent in the DE, NJ and PA area had taken their child in for the exact same issue and reason.  After much deliberation and a pep-talk from a good friend (who also happens to have a beautiful little girl with her very own set of designer genes!), Natalie, Kelly & I were off to A.I.'s emergency room.  I even packed a bag with our necessities, should we be admitted.

   Surprisingly, the ER was not crowded and we were taken right back to a triage room where an ER tech weighed Lil’ Miss Natalie and took her temp.  He then proceeded to tell me "I don't know why you're here, she's breathing fine and her color looks good".  Immediately I was berating myself for bringing Natalie in and not waiting till the next day to have her examined by the pediatrician.  Just before I burst into tears for becoming an overreactive mom, the ER nurse walks in, took one look at Natalie and says "wow, I'm really glad you brought her in.  She definitely has something serious going on.  Let's get you back to a room".  Ha, Take that you stupid tech...as I childishly stuck my tongue out at the back of the his head. 

    Once in our room we have a few nurses stop in before the doctor arrives.  I wish they would come in at the same time, I really dislike telling our story over and over.  Plus it’s late, past my bedtime and my brain is tired.  Natalie’s heart defect, although repaired, can throw a wrench into any plan and this evening it caused complications with her plan of care.  After a quick debate with the cardiac team and review of her recent EKG and echocardiogram, it was decided to give her racemic epinephrine and steroids.  The epinephrine nebulizer treatment would open her lungs, relieving the stridor and retracting.  The discussion that took place between the ER and cardiac team was over the epinephrine inhaler.  Epinephrine…increases heart rate…constricts blood vessels…not good side effects when you’re dealing with a fragile heart.  Most kids would receive the treatment(s) and sent home after an hour of observation, Natalie on the other hand had the pleasure of being hooked up to the heart, respiratory and oxygen monitors and observed for 3 hours.  At the end of our three very long (pacing the floor with Natalie; sending Kelly on ice & hot water runs; and maybe 30mins of sleep for Natalie) hours, we were free to go home.  Once reviewing and signing our discharge papers, we hightailed it out of there.  It’s amazing how vacant I-95 is at 3:30am, with the lack of other cars head & brake lights I struggled to stay awake.  After arriving home and settling Natalie into bed, I finally crawled into bed at 4:30am. 

    I awoke on the 3rd at 7:30AM with Ben –dressed in his work attire- standing over me, asking if he could leave for work to make his 8am meeting.  I’m fairly certain I gave him a look that must have made him fear for his life because I woke up to coffee and a cheese omelet awaiting me in the kitchen at 8:30. Today was the day that our new Keurig and I became BFF’s.  When Natalie arose from her sleepy slumber, she was pale and had dark circles under her beautiful blues eyes.  I felt bad for her, I knew she had been through a lot just a few short hours prior so I thought nothing of her discolored skin.  It wasn’t until she awoke from her afternoon nap that I realized she was still in distress.  I made two phone calls 1) Ben- letting him know he needed to come home to take over Hannah duties, 2) the pediatricians office to make certain I wouldn’t end up at the ER with the staff wondering “why the hell did you bring your kid in again?”  While waiting for Ben to arrive home, I re-packed our bags and tried to mentally prepare for the evening ahead.

After x-ray

           So, there we were, less than twenty hours from our last trip in and less than seventeen hours from our release.  Only this trip there was a much longer wait…for everything!  An hour wait before getting a room; another hour to see the doctor. Perhaps my meltdown (after having been in the ER for over 2 hours) when the nurse came to get Natalie’s vitals helped speed along the process, because within ten minutes Natalie’s doctor came in.  The best part, it was the same doctor as the night before, and I loved her.  She was very direct & to the point and I appreciate that out of a doctor, no BS or skirting around the issue at hand (I discovered my need for doctors like this while helping my mother-in-law through her two battles with cancer).  Dr. D did not like that Natalie had had another episode of retracting along with purple extremities.  Upon her exam of Natalie, it was revealed that her liver was enlarged and Dr. D was very concerned.  At that moment, Dr. D said she was admitting Natalie to be monitored closely.  At this point it was midnight and we had seen a new day begin in the ER; I was running on 5 hours of sleep in the last 42 hours.  Knowing she was going to be admitted, we decided to settle in and try to get comfy, as we were going to be there a while.  Comfortable was the last thing the ER staff would let us become, during the next 2 hours Natalie went in for x-rays (my favorite part was when the x-ray tech asked me if there was any chance I was pregnant…I just laughed in her face…she proceeded with her work) in which I had to pin my child down to the table and attempt to hold her in one position for 2 minutes.  Now, for those of you who are not familiar with children with DS, they are VERY flexible.  Sometimes it’s as if you are trying to pin down a skillful octopus, oh and don’t forget to add in the wailing…you know, because the octopus doesn’t want to be pinned down, she wants to roll around and explore this lovely new table!  The x-ray tech put this little piece of fabric across Natalie's legs with an even tinier piece of Velcro…she discovered quickly that it wasn’t going to hold Natalie's lower extremities down and unless she wanted a lovely shot of my radius and ulna, she needed to figure out another method of getting Nat’s legs to stay still!  All of that was endured so we could find out an hour later that everything looked good on the x-ray.  Better safe than sorry.

Now comes my most dreaded part of being Natalie’s mom, the IV.  Thank heavens our nurse, Heather, remembered us from Natalie’s trip to the ER in February (6 days after she was born- more on this story at a later date) and she was quick to recall that the IV team failed to properly insert on MANY attempt’s.  This time when the IV team entered the room, I knew it was my cue to exit.  If there is one thing that I can’t handle, it’s the sound of sheer pain in my daughters cry.  I escorted myself to the quiet room in hopes of being able to decompress.  I lasted all of three minutes.  I thought for sure that three minutes was a sufficient amount of time and I headed back towards our ER room, only to find Natalie’s roommate and his father standing in the hallway.  Turned out the poor kid was there for an earache, Natalie’s screaming wasn’t helping…I apologized profusely.  I didn’t hear screams, so I assumed it was safe to enter.  You know what happens when you assume, don’t you?  Sure enough they had failed, twice.  I walked in during attempt number three.  Seeing my mom and the nurse struggling to keep Natalie still for the IV lady, I knew I had to stay.  It took three of us to hold her down and Heather was literally lying across Natalie’s legs and had white knuckles from holding down her right leg.  Between that and the blood curdling screams coming from Natalie, I lost it.  Both of us sobbing and by the time it was over I looked down at Natalie and wondered how she didn’t drown from all the tears that had formed between the two of us. 

   Once we all had calmed down from the IV debacle, it was time to settle in and get as comfy as possible on the little gurney.  I’m not kidding when I say every time we fell asleep, someone else came in asking the same information as the previous person.  One resident in particular pissed me off.  Walked in, flipped on the blinding overhead lights, and talked loudly.  This set me off instantly…my baby was FINALLY asleep for the first time since her nap that had happened earlier in the day.  I whispered as if to prove a point that “look Dickhead, my baby is finally asleep and I’m trying my absolute best not to tear you a new asshole!”  Very loudly he replied with “It's only you in the room.  Your roommate is gone.  You will have to speak up I wear hearing aides, I can’t hear well.”  He proceeded to request info from the very beginning of Natalie’s life…I wanted so badly to flip my shit, yet I refrained.  And to this day, I don’t know why I contained myself.  If I run into him again, I will be sure to put a curse on him for when he has children, that he encounters the same difficulties that he inflicted upon me that evening morning.
    Around 5:30AM they came in to say that there was a room available on unit 2A.  Woo-hoo, we were movin’ on up...and it was NOT to the East Side!  Let me tell you, last year when Natalie was admitted twice to the Cardiac unit (2B), she had her own room.  All the rooms on 2B are private rooms and the parents are encouraged to stay with their children.  I had no idea how fortunate we were and I was about to find out how spoiled I was by everything 2B offered.  2A only offers shared rooms, this is not ideal…not for someone who enjoys her space, her privacy and lots of quiet.  When we were escorted to our room, I was convinced that we were in a closet!  My dining room was bigger than this room and somehow they had two cribs and two pull out cots crammed in that damn room.  Instantly my claustrophobia set in, I could feel my heart racing, I was having difficulty breathing and my eyes began to well up. Every time someone entered the room, the door would slam into Natalie’s crib (so much for a sleeping baby).  The bathroom door was next to my lovely cot and it would slam into my bed if opened more than one foot.  I used the bathroom once. It appeared as if it was used for storage.  From that moment on I chose to leave the unit and pee in the public restrooms in the hallway, at least I was guaranteed they were being cleaned!  Oh, and the icing on the cake was when they informed me that our communal bathroom was shared by 3 other families.  It was at that moment I knew we were NOT staying.  We would be home by dinner, even if it meant that I had to take Natalie out AMA (against medical advice). 

    Luckily for us the nurses shift change happens at 7AM, we arrived in our room at 6:20.  I’ve never witnessed an admission happen so quickly in the 4 times she's been admitted.  These ladies half-assed EVERYTHING!  At one point they had asked me if she was weighed in the ER, I lied and said yes (technically she was weighed in the ER…two days ago).  They took my word for it and didn’t weigh her.  My jaw almost hit the floor but I caught myself, as I was fearful of the germs.  Once half-ass Sally left the room, my mom, Natalie and I snuggled up on our cot and they slept for about 30-45mins.  I was afraid to sleep, I didn’t want Natalie to fall off.  You might be asking why I chose for her to sleep on the cot with us, instead of her crib.  Allow me to explain:

1) The door would hit her crib every time someone walked into the room.

2) The crib looked as if it was designed to cage a monkey (I wish I had taken a photo!).  I’m certain that these nurses have cared for some unruly children.  But when was the last time they had an 11 month old with Down Syndrome who scaled a crib and managed to escape?? 

3) It appeared as if said crib was left over from when the hospital 1^st opened in the 70’s.

4) The vintage crib was broken, show me your surprised face.  When I brought it to the attention of Nurse Ratchet, who admitted us…she applied medical tape and left the room.

Honestly, who would want to wake this cutie?

    Sometime shortly after our admission, a nurse practitioner stopped in to check on Natalie, she wanted to see her before rounds began.  This lady was very kind and respectful of the sleeping baby (and the sleeping baby's grandmother).  This woman clearly had her own children and knew one should never wake a sleeping baby.  I wanted to throw rose petals at her feet! 

     Natalie woke up when her roommate’s family (yes, family!  They were redneck just like us…squeezing two people on a cot.  Except THEY had a functioning crib on their side of the room) were asked to leave the room for his x-ray…we were more than 6 feet away, so we were ok.  Honestly at this point I didn’t care, what was one more dose of radiation?   All the commotion woke Natalie up, which was perfect as rounds were beginning, in her room!!  

This photo was taken right before the doctor entered her room.

  Upon Dr. P’s examination, he felt she looked good.  He said that perhaps she needed more time than most children for the medication to take effect.  I wanted to say "No shit Sherlock", but I refrained.  He said she could stay and continue to be monitored for the next 24 to 48 hours, but if I felt confident I could take her home.  I failed to hear what else he had to say because I was packing our bags and loading them into a wagon I found in the hallway!  About 30 minutes after that transaction, my mom, Natalie and I found ourselves in the gift shop picking up Natalie's free balloon.  I just had to get Natalie her free balloon, see...Hannah has had a Tinkerbell balloon in our living room since December and Natalie ADORES that balloon.  Sadly, Hannah barely let's Natalie look in the direction of said balloon, so I was on a mission to get Natalie her own special balloon that she could taunt Hannah with:)

   This is how our 72hours of hospital fun ended...we get home and I back the car into the garage.  Natalie is naturally sleeping, so I proceed to unload all of our stuff from the car before disturbing her.  I managed to carry all the bags (3 total), the bobby and the balloon into the house.  As I set the bags on the bench in our front hall I was left holding the red string that Natalie's balloon was attached too.  Apparently it was so warm in my car and chilly outside, that major shrinkage occurred and the damn balloon shrunk it's way out of the flipping ribbon.