"B" Feeding

There is an endless debate on whether breastfeeding is best.  Formula bottle feeding has gotten a bad rap these days...  So many negatives as opposed to breastfeeding.  Sure, breastfeeding is convenient and free.  Personally, I love to breastfeed.  It's a bond like no other with your child.  They need you and you provide for them; what's not to love about your child needing you right?  My son Will, who is nearly five, was breast fed.  He pretty much figured it out before I even knew what he was doing (talk about instinct!).  He was hungry 24/7.  He read the book on getting fed every two hours and stuck with it for close to three months!  It wasn't until I went back to work and it became more and more difficult to slip away to pump did my milk supply slowly dwindle.  I'm not a milk machine by any means but we breast fed as long as I possibly could with him.  I didn't have a stock pile in the freezer; what I made he ate.  I've read about these women who have something like two gallons of milk stored away in their deep freeze and I wonder what milk bank they robbed to get all of that!  Geesh!  After six months and 4-6 teeth in his little mouth, I pulled the plug for good. 

So with Sloane, it was a no-brainer.  We would breast feed again for as long as I possibly could.  Just like with Will, I bought a 3 back of baby bottles in the event something happened to me and my milk supply and Derek needed to feed her (hey, I'm a planner, gotta plan for the worst).  But I had no intention of using them for at least 2.5 months...
When she was born and they told us she had Downs, I had no idea what that would involve in an infant.  I'm mean, she's a newborn; all the pain of raising a special needs child would come later right?  She had a good heart, her digestive track seemed OK, her weight was nothing to be alarmed about, she was a little on the short side but she does have Downs-she's going to be short right?  What does low muscle tone mean for a newborn?  We were about to find out. 

Having Sloane in our hospital room those first few days was a must.  The hospital made great strides in the last 4 years to make sure that happens. The nurses no longer whisk your baby away to check their vitals and weight along with giving them a bath.  They do everything in your room now.  I was pleasantly surprised.  We really felt like we were apart of everything going on in her life.  Whenever a nurse came into the room (whether it be my nurse or Sloane's nurse) Derek and I were either trying to wake her up to feed or trying to wake her up in the middle of a feeding... she slept ALL the time.  Any parent would say "Yeah" to that except that Sloane really needed to eat.  My milk supply was depending on these first few days with her.  We were really getting worried with the amount of time she spent sleeping.  Is it because she was born a week early; is this what premature babies do?  What we found out is that low muscle tone in an infant with Ds means the muscles in her face too.  Poor Sloane would try to breast feed and within the first 5 minutes, she would tire out and fall asleep, a deep sleep.  There was no waking her.  I felt so helpless at that point.  My mothering skills were failing me, she would not eat.  The nurses could tell I was struggling and in a state of desperation so we called a lactation consultant.  My first (yes, there was more than one) lactation nurse was about 7 months pregnant with a child of her own.  She was so nice and comforting to talk to.  She even confided that her child might have Ds but they're not 100% sure.  She knew Sloane had Downs and explained to me the importance of getting her to eat whenever she woke up.  Little did she know that Sloane would sleep for 4 hours at a time; completely knocked out asleep!  It was so difficult to wake her... I asked her how many children with Downs she has consulted with and she said none... NONE!  What do you mean none?  She said most babies with Ds are whisked away to the NICU and the nurses never see them.  I sat back in my bed and was in awe of my little girl... she beat the odds.  She didn't go to the NICU; she was with us in our room.  I was so determined right then and there to get her to eat, to keep her in our room.  I didn't want to lose her to the NICU... So we tried and tried but she just wouldn't stay awake long enough. 

Time for our second lactation consultant... Elisabeth. She brings with her a hospital grade pump and a big bag of supplies.  I'm thinking to myself "No way am I pumping!"  But we're desperate, I'm desperate.  She needs to eat.  Each time Sloane's nurse brings the infant scale in my heart sinks.  How much weight has she lost this time?  Is she OK?  For a little while, yes she's OK but she needs to eat. 
The lactation nurse shows me how to pump my colostrum, what little colostrum I'm producing, into a vial.  Then she chooses the smallest syringe out of a stack of 12 to extract the 1ml of colostrum to force feed Sloane.  1ml seems like so little yet when I'm feeding it to her, it takes all her energy to swallow it down...  What am I going to do if I have to feed her 1ml at a time?  We pretty much repeat this routine all day... With every drop that runs down her cheeks my blood pressure rises.  "This is liquid GOLD Sloane... you're wasting it!  You need to eat!" What are we going to do?  Sloane's nurses, sensitive to new parents of a child with Ds, come in and inspect her feeding chart every hour on the hour.  "How much has she eaten?" "When was the last time she had a wet diaper?"  All viable questions but you feel like you've been put on the chopping block eat time.  "Are you performing as a parent" is what they're really mean to say... Go on, check her heart beat, see if she's still alive as she lies there sleeping... I can't remember a time when a nurse didn't come into the room and I didn't start crying immediately after they left.  I'm failing as a mom.  Derek was being so supportive but I'm failing...
Well, in walks Daisy (I think that was her name-it's the exact opposite of who she really is so that's all I can remember in a name).  She's a fill-in nurse.  I don't even think this is her floor or her expertise.  She walks right in and starts checking out our sleeping baby, never mind knowing how old she is or what's going on in our room when we're alone.  "When did she eat last?"  I reply about two hours or so ago (it's on the chart lady, just read the Damn thing!).  "How much did she eat?"  About 3ml I reply.  "Uh, she needs at least 30cc every 2 hours!" (that's 30ml people...).  I tell her that's impossible, I can't make that every 2 hours!  She's only 2 days old, my milk supply hasn't even come in yet for crying out loud!  "Well, we need to get a lactation consultant in here" she spouts off.  Yeah, you do that lady!  I reply "Elisabeth was just in here 2 hours ago, why don't you call her back in."  She looks at me with a surprised eye, either surprised I know the lactation consultants name or that one has even seen me.  I don't know but I want Daisy out of my room this instant. 
She finally leaves and the tears come pouring out.  I'm sobbing and Derek is just beside himself.  I know he's thinking how could this nurse come in here and bring my wife to the point of feeling like a complete failure.  This is our second child, not our first; we know what we're doing here... But I feel like I'm starving this poor innocent child.  I just can't sit here and let that happen.  I know the next step but I just can't get myself to do it.  I would be giving in and then truly failing at the one thing I'm supposed to do.  Elisabeth returns and she reassures me we're doing everything we can to help Sloane thrive.  I'm OK, I'm doing a good job, I'm a good mom.  We discuss our options though and I tell her I'm willing to bottle feed but I just want to give this another try.  She consoles me and tells me it's my decision.  She's so supportive, she makes me feel like I'm doing the best I can.  We need more Elisabeth's in this world! 
Well, guess who comes in for another check... Ms. Daisy. THIS time her attitude is drastically different; 180 degrees different.  "How are we doing?" in a super pleasant tone.  We reply and she says "Well, if we need to supplement..." and right then Derek jumps on those words "What do you mean supplement, we're not supplementing with formula!" he says not so nicely.  She replies "...with the syringe feeding..."  That's better... He'd had it with her abusing his wife, but at least she explained herself.  We're not bottle feeding lady, Elisabeth said we're doing OK.  Daisy reiterates "Just keep trying and if you need anything, let us know".  Sounds like someone got her you-know-what chewed out by Elisabeth for her attitude towards a couple who have been through more in two days than she has her entire life.  I imagine Elisabeth informed Daisy of Sloane's condition and Daisy didn't bother to read the chart and find out for herself.  I imagine Elisabeth told Daisy no woman produces that much milk the second day after having a baby... I imagine Elisabeth instructed Daisy to BE NICE! 

We left the hospital with Sloane dropping 9% of her body weight.  She was doing better at eating but it was still such a struggle.  My Doctor offered us to stay another day if we needed it.  We were allowed to go home after three nights/four days but could stay a 4th night if we needed to.  I think he was offering because we had been through so much.  If we were afraid to go home with Sloane without the help of the hospital and nurses (no, not Daisy), we could stay another night.  My thought was, and Derek agreed, we stay another night and Sloane drops to 10%... then she's not allowed to leave!  No way are we falling into that trap...  We want to get home to our lives, to our son Will and our home. 
I was prepared to admit when we needed to supplement with formula and by the first week we finally gave in.  It's hard not to feel as a mother you can't provide for your child.  The time in the hospital was difficult.  My milk supply finally came in but it wasn't the same as with our son.  Her eating habits aren't as strong as Will's.  You need that constant stimulus in order to have a strong milk supply and it just didn't happen.  After the first week, I went back for another lactation consult.  I was pumping to try to get my supply up.  By the second week I met with the lactation nurse again.  I would pump three separate times in order to have enough milk for one of Sloane's feedings.  One ounce per pump session is not my idea of a productive 20 minutes...  But I kept trying; I just wasn't producing enough.  I tried supplemental vitamins, eating almonds, breast massages, relaxation time, anything to get my milk supply up.  Each day it seemed like we were feeding her more and more formula; she was gaining weight and growing and needing more food.  She rarely breastfed at all.  I would pump and we'd take turns feeding her from a bottle.  We were happy with her growth but I was a little sad that I wasn't the one solely helping that along.  Enough was enough though, no more crying and being selfish.  It was about Sloane not mommy.  By the time she reached one month of age I decided that my time was better spent and I stopped breastfeeding and pumping all together.  A few nights I would breastfeed, just to relish in the thought I was providing for her but it put her to sleep more than anything... She still needed me, with or without breast milk.  I needed to close that chapter in our lives.  And poof, gone were my opinions that every woman could breast feed.  I may have given up breastfeeding but that doesn't mean I gave up on providing for our daughter.  What I did provide in that small amount of time was useful and helped her grow.  I did what I could. 
I would give her a bottle in public and wonder what other women were thinking about me though.  Am I the mother that doesn't care enough to pull out my breast and feed my child?  Well, I never did that Will but that's beside the point.  Are they looking at me in disgust or disappointment because I'm feeding my child formula?  What will I say if they ask me if I breast feed?  I had my response all ready... a lie that is.  I'm not going to tell people my child has Downs and couldn't breastfeed well so my milk supply went down the drain... It's not her fault.  Nothing is her fault.  Luckily, no one ever asked... Either they just don't care or they don't dare ask.  Like it's any of their business anyway.  But I do worry about being judged as a mother.  I worry they'll judge our daughter.  What? No breast milk?  That's why she has developmental delays... Way to go MOM! 

I will have to say formula feeding does have it's advantages.  Besides the downsides of costing a fortune and always having to remember to bring it with you... you can feed your child anywhere.  I don't need to find a place to hide and breastfeed my child.  Eating dinner?  Make a bottle of formula and join in at the table Sloane!  Visiting my friends at the office?  Make a bottle and walk around the office with her!  At Will's gymnastics class?  No problem being surrounded by 100 strangers.  I got this covered!  The good news is she transitioned smoothly between breast milk and formula.  It's like she knew mommy was having a difficult time with it and she said "It's OK Mommy.  See, I can eat both.  I'm not picky!"  She makes everything seem better.  For how much we as parents have struggled with the realization that she's forever going to live with this disability, she sure does make it look easy! 

Baby Smiles

I'm jumping ahead 10 weeks here; this story is too good to wait on.  I have more to share from our hospital stay and the first few weeks but I don't want to forget this moment.

When reading about all the different developmental delays Sloane will endure; one would never believe anyone who says smiling is the only milestone that happens on schedule...  I certainly didn't believe it for a second; that is until it happened last night. 

Earlier this week Sloane flashed me a little smile, just one quick smile.  I have a witness with Derek that she smiled.  He saw it from the side as she smiled at me.  We were both so thrilled!  I thought for sure she'd do it again but days passed and I couldn't get another smile out of her for the life of me.  I had given up inside, thinking "oh, it was a one time fluke or gas or something other than my reflection of a smile that caused her to react the same way too.  That idea changed last night. 

It was around 4:00am this morning and I could hear her in her crib beside our bed wrestling around.  She rarely cries at night; we hear her grunts and feet kicking around in the bed more that we ever hear a mutter much less a cry.  Anyway, diaper change first, then a bottle.  By 4:30 we were burping and praying she'd fall back asleep.  I try not to talk to her too much at night for fear she'll stir awake and then not go back to sleep at all (been there too many times).  This morning though, she decided all on her own to stay up and keep me company... I took her off my shoulder and looked at her.  She could see my face from the light of the closet in the bathroom.  I could see her looking deep into my eyes, waiting for me to say something.  I gave in... "Hi sweetie. You sure are awake Sloane!"  A few more "Hi's" and "What are you doing awake's" later and I had her full attention.  I smiled brightly at her and waiting for her to lift her head up and come face to face with me.  She raised one eyebrow and them beamed back at me with a "coo" and "gurgle".  I think she saw how startled and excited I was; she beamed again at me.  I thought for sure we were going to wake up Daddy (and Will) next to us.  Nope, it was just me and Sloane having a converstion and smiling at each other!  I think I received 4-5 big smiles and probably 5 minutes of conversation before I realized it was nearly 5:00am!  At that point I didn't care.  I sweeped her up in my arms for a big hug and plenty of love you's and kisses. 

We made our way downstairs but by then I could tell all that stimulation had worn her out... I held her for a little bit longer and savoured those moments.  My daughter smiled at me, she actually smiled.  She was happy and she smiled.  I'll forever remember those gums flashing a great big smile, knowing she loves me as much as I love her in that moment.  I understand that some things we're going to have to wait a little longer to celebrate; rolling over, crawling, walking, her first words... But to see a smile; the one emotion that lets you know she understands how hard you're working to please her and make her happy; this makes a parent's dream come true.  You love your children from the moment they're conceaved.  To see your child reciprocate that back to you is beyond words.  You're doing something right, you're doing a great job, and she knows it!  This is why I love being a Mommy.  This is what I have been waiting for my whole life. 

At first I was disappointed that she would "struggle" to meet these milestones in life.  Now I see that these milestones will be worth the wait.  She was worth the wait too. 

Our Story

Where to begin... I'll start out our story from the day Sloane was born.

Sloane's due date was July 27th.  She came a week earlier via c-section on July 20th. We were looking forward to this day; everything was all planned out; we made arrangements for Will to stay with his grandparents, we had everything packed and ready to go, it was great. Our last few hours as a family of 3 were spent at home just relaxing with Will. It was hard to believe then that this was Will's last moments as an only child! He was going to be a big brother today! He was so excited; more so because of our excitement but all the same he was ready to meet this little baby inside of me we had come call "Baby Sloane".

Sloane's birth was planned for noon that Friday (convenient for the doctor I told him... No fun for me who couldn't eat past midnight the night before!). When we got there, it sort of felt like I was checking into a hotel... "your room is right over here, please make yourself feel comfortable, put your bags over here"... but of course hotels don't give you hospital gowns to wear and hook you up to all sorts of monitors! Anyway, Derek, Will, and Derek's parents were all there with me and Sloane. Surgery was a little late as usual so we took pictures and chatted about what was about to happen. I was actually told by the nurse she was already causing contractions.  And here I am, the experienced mother of one already, you'd think I'd know what a contraction was.  I thought it was just Sloane trying to make herself more comfortable in there.  Nope, we were actually having contractions!  It's a good thing she was entering the world today... 

 

By about 12:45, they were ready to wheel us in. I went in by myself and got prepped for the spinal tap/epidural. This is my least favorite part about c-sections. I won't go into detail but the idea of lying on a table with your arms spread out with no ability to move your body below your chest makes you feel a bit vulnerable. Beached whale is all I kept thinking when I looked down the table at myself... Derek, Dr. Kaye and the rest of the crew joined in and we were ready to go. This c-section was actually a lot of fun, no threat of a baby in distress (like Will), no waiting 20 hours for her to come naturally (like Will), no night time delivery (like Will...). Piece of cake! I would ask Derek what they were doing and he would give me the play by play.  The nurse assisting me was letting me know everything was going great.  I could hear the doctors' conversations as they went about the work.  And then at 1:13PM Sloane was born! All 7lbs 3oz of her!  I heard the cry of our baby girl and my heart just melted.  It all happened so fast. Derek took a picture of the moment her head popped out.  She was here and poof, my tummy deflated like a flat tire!  I kissed Sloane and she and Derek made their way to the prep table directly to my left to get checked out.  They weren't but 6 feet away from me but I was twisting my head back to get a better look at her.  All I kept thinking was "We have a daughter!  We have a baby girl! " 

 

 

Knowing what I know now; I never would have thought that in an instant my world would come to a crashing halt, like a ton of bricks being dumped on my chest... Unbeknownst to me, the nurses were talking in code.  I wasn't paying any attention to them. I was riding on the high of giving birth.  Any mother knows what that feels like.  You just ran a marathon and won!  You did it; you nurtured a baby inside of you for 10 months and you did it!  Nurses talking in code means their doing a good job... The next thing we hear though are words that still ring in my ear... Dr. Kaye said "How does she look?". What? What do you mean how does who look?  What are you talking about? You're surely not talking about Sloane... I froze. Right then I knew. I knew something was wrong with her. The nurse taking care of Sloane stopped talking in code. "I can't tell if she has a heart murmur (stethoscope on Sloane's chest) but she has signs of Down syndrome"  Down syndrome... two words no parent is prepared to hear for the first time.  It's like a bomb went off in my ears.  I could hear the nurse talking (eyes and ears this, hands that... all the associations with a Down's baby) but all I was listening to was the voice in my head "no no no no no no no no... not my baby, please, please take it back!" I started to cry.  I turned to Derek and asked "What does she look like?" He was listening to the nurse and trying to understand exactly what going on... "What does she look like Derek?"  He turned to me and said three little words "She is beautiful..."  Those three little words should have been enough, they really should have been enough. I just burst into tears, I couldn't breathe I was crying so hard. My nurse quietly asked me if I knew.  I'm sure betweenthe tears and sobbing breaths she couldn't understand a word I was saying but I told her we thought there was a chance at 15 weeks she could have Downs but we ruled it out when the specialist told us her heart appeared ok and all her features appeared normal.  She was supposed to be ok, she was supposed to be fine.  I realized then we wanted so desperately for her to be normal, we just told ourselves what we wanted to hear... The specialist said "appeared" but we heard "100% OK". More tears poured... The nurse then asked me if I wanted something to calm me down.  I looked at Derek and all I could think was "is he feeling what I'm feeling? is he ok while I'm breaking down? is he disappointed in my sadness"  I told her yes and she said I might not remember anything after this. Like I'm going to be able to forget this...

My nurse whispered to Dr. Kaye and then Dr. Kaye reached over the screen and asked me "Are you sure you want me to tie your tubes?"  He looked over at Derek and looked back at me and said "It's permanent, so I just want you two to be sure you're done having any more children". Derek and I looked at each other and I could hear us both saying "Yes, we're sure. She's our last one. We're done."  There was no trying again to get it right.  What we didn't know then was that we did get it right.  She was perfect...

We were reassured her heart was ok by Sloane's nurse and Derek left with them so he could announce Sloane's birth to Will and his parents.

The following moments for me seemed like an eternity. I was alone. Alone in an operating room surrounded by strangers who just witnessed a not-so-pregnant woman having a nervous breakdown. I was alone with my nurse on the other side of this blue screen that shielded me from seeing the tubal ligation that was now taking place. She became my savior... She confided in me that she had twins once, a boy and a girl. The girl also had a disorder that took her life at a young age. She lived 8 days and in those 8 days they loved her with all their hearts. She was so special to them and Sloane would be special to us too. I needed that. I needed to know I wasn't alone, in that room and in this world. 

It's extremely hard to explain, especially if you haven't gone through it yourself.  There is a fear of being judged by those that don't have a clue what it feels like, who haven't walked in our shoes. Every time I thought of Sloane I cried. I cried for 4 days straight in the hospital. I cried a dozen times a day in the weeks that followed. I was crying for all sorts of reasons. Not just the sadness that overcame me but also for the joy in this life that has blessed us.  In the hospital, I couldn't talk about her or her Down syndrome without tears welling up in my eyes and a lump in my throat forming. My love for her is so deep and knowing that she'll be challenged her entire life brought me so much pain.  I have loved her from the moment I knew she was growing inside of me but I had pictured our daughter differently in my mind. Even though she was right there with me, lying on my chest sleeping, I felt like I wasn't given the baby I thought we deserved.  I felt so incredibly guilty for wanting her to be normal, our lives to be normal.  I wanted to rewind the clock and change the event that unfolded.  I mourned for the baby I lost the moment Dr. Kaye said "What does she look like?" Derek would try his best to console me. We tried so hard to console each other those first 4 days.  We tried to hide our emotions from the many people that entered our room... The guilt inside of me was so intense.  All I could think was I caused this, I gave this to her, it's all my fault... She didn't deserve this. It's just not fair... And what was I thinking, having a child at 40... Being Sloane's parent is a lifetime job and here I am having her at an age where I won't be around to take care of her her whole life! One of the reasons (among so many) we wanted another child was so Will wouldn't grow up alone.  The burden to take care of his parents wouldn't fall solely on his shoulders.  Now... not only does he have to take care of us; he has to take care of Sloane too... I look at this little boy who is so full of life and love for his little sister.  He loves her unconditionally and doesn't have a clue yet what his life is going to be like.  But in my heart I KNOW he's going to be the best big brother to his little sister.  God blessed us with such a wonderful little boy knowing that Sloane would be his little sister. Her protector, her mentor, her best friend. Derek and I feel blessed to have Sloane in our lives too. More importantly, she's blessed to have all of us to love and care for her and provide her with the best possible life. A chance to live life to the fullest. 

 

A dear friend gave me a better perspective on my faith in God. Instead of thinking God only gives us what we can handle; think of it as God will give you the strength to handle what you're given. Derek and I have been given not one but two special blessings.  I may not have imagined a little girl like Sloane as my daughter.  I know now that I can't imagine my life without her.