In the NICU

I'd read about a lot of moms whose cleft babies had been whisked away to the NICU following birth, because the hospitals were unprepared for them, uneducated, and uncomfortable having them room-in with them.  But I knew it wasn't the case with us, because my hospital was informed and well-educated with clefts.  However, soon after giving birth, they told me he had to go to the NICU, because not only was there meconium in the amniotic fluid, but I'd had a fever during labor, and they needed to monitor him for a possible infection.  I was devastated.  I wasn't prepared for that at all.  It was such a huge disappointment.  After all of those months of worrying, I was finally going to get my chance to really bond with my baby, and that was now getting taken away from me.

I got to hold him for a couple of hours before they took him away.  One of my fears was that he would be neglected in the NICU, because how could a baby with a deformity be loved by anyone but his own parents?  It was such an incredible relief to learn how very wrong I was.  The nurses there adored him.  They would carry him around, dote on him, and cuddle him when I wasn't there.

 One nurse, after bathing him, offered to put a bow into that incredible hair of his, laughing as she held up a dark blue one.  She finally decided she'd better not since she suspected my husband probably wouldn't love that idea.  I loved how they loved him.  Another nurse devoted a lot of time into learning how the bottle would work best.  She would practice, then show me so that I could feed him easily.  He always had the biggest burps, and she would proudly announce it to everyone who would come by for a visit.  Being there was such a positive experience.

I still wasn't totally comfortable with feeding him, and they decided they'd keep him there one more day for my sake.  I was really annoyed by that, but at the same time, grateful that they were anxious for me to feel comfortable.  We used the Johnson-Mead squeeze bottle with the pigeon nipple.  We would line the notch up with his nasal septum (since he had a cleft palate), and then we would squeeze the bottle gently, letting him swallow about five times, and then letting go so he could catch his breath.  This worked the best,

and allowed him to drink his bottle with ease.  He was such a great eater, and I am truly grateful for one less thing I had to worry about.

My mom came to meet him, even though I was hesitant since I was still hurt from her cold shoulder.  I wanted to keep him away from anyone who wouldn't love him, and I didn't feel ready to face another rejection to my child.  Before she saw his face, I told her that he had her same chin (ironically, a cleft chin).  As soon as she saw him (and that he shared her chin), she grabbed for him, and all the coldness melted away.  She was absolutely in love.  I understand now the fear and confusion and questions she had, but at the time, it was very difficult for me to deal with.  I mean, if there should be one person who's going to love your children besides you and your spouse, shouldn't your own mother be it?  Anyway, once she met him, all of her fears disappeared, and she was ready to completely love him and let him in.  I know that not all family members are able to brace the cleft, however.  I've heard of other grandparents not being either able to or willing to bond with their grandchildren until after the surgery, but again, I think it's just the fear of the unknown.  It's scary not knowing what to expect, and knowing that eventually, the face is going to change after surgery.  It doesn't make it any less painful to deal with, but there it is.  I guess understanding an outsider's point of view makes it easier to move on, because that's why we have these babies, to teach us a love and tolerance we might not have had otherwise.  All that's really and truly important from the moment after birth is that you love your baby with a deeper love you ever could have imagined, and that you're there to be their advocate in a world that may or may not be quite ready for them.

Birth

My due date was two weeks away, but I had an overwhelming urge to pack my hospital bag.  I shoved the thought away, because the rate I do laundry, I didn't want to have my clothes packed for two entire weeks and be out.  Instead, I chose to shower and shave my legs, and I even painted my nails.  You know, just in case something were to happen.  I even started sleeping on top of a towel with the hopes of my water breaking.

I woke up on October 12th, and got ready for another ultrasound and weekly OB appointment.  I had hoped to maybe catch a glimpse of my baby's face in this one, to prepare myself for what was to come, but he was stubborn, and was facing away.  There wasn't a shot of even getting a peek.  Everything was looking great, except that when the ultrasound tech measured my amniotic fluid, it wasn't where it was supposed to be.  He asked if my water had broken, but I hadn't noticed.  Would I have noticed it?  I had developed a cough over the past several days, and, well, any experienced mother knows that coughing can have a...dampening effect.  Could that have been it?  Could I have lost some fluid during one of my coughing spells?  I'd noticed that over the past few days, my pregnancy was suddenly very uncomfortable, and I had really limited my walking.  Luckily, I had listened to my body and had taken it easy.  My ultrasound tech warned me that my doctor was probably going to have me induced that day.

I met with her immediately after, and sure enough, she asked if I was ready, because I needed to give birth that day.  I couldn't believe it.  I wasn't ready!  Not emotionally, and of course, my bags weren't packed.  But at least I had showered.  I was given permission to go home and pack, and to immediately come back.  There was an incredible amount of chaos and stress as we tried figuring out the whole babysitting thing, as well as my husband's work situation.  It was the worst day to be induced, because my mother-in-law was out of town on a bus trip (she was the designated babysitter), and some of my kids were in school and would need to be picked up later that day.

Normally, lying in the hospital and waiting for contractions to speed up was thrilling, but I still hadn't fully come to terms with my baby's cleft.  I wasn't ready to meet him.  There was still fear and uncertainty, and I dreaded each contraction I suffered through.  A day that was supposed to be beautiful and exciting was dark and sad.

At last, the time to push had arrived.  I was terror-stricken.  I didn't want to push.  I really didn't.  But I didn't have a choice.  When I finally heard the cry of my newborn son, every ounce of fear and dread disappeared.  Love, excitement and peace washed over me, and I grabbed for my child.  I looked at his face, and fell in love with the sweetest, most beautiful baby.

I couldn't believe I had wasted so many months worrying and scared of what he would look like, because in that moment, he was the most perfect looking baby I had ever seen.  I couldn't believe just how much I loved him!  The roller coaster had finally come to a stop, and at last, I was on the top.

Choosing My Cleft Team

On the day of my 20 week ultrasound, I was given a sheet of paper, and told to call someone from Primary Children's Hospital. Natalie Lyon was the program coordinator for the Cleft and Craniofacial Center. She would have information for me, and I needed to meet with her to set up a plan for my child's care.  It was not something I wanted to do.  It took a few days to gather the courage to call her, because calling her meant that what I was faced with was going to suddenly get real.

I drove down to Salt Lake, about an hour and a half away, and I sat with Natalie in her office.  She showed me pictures of children with different types of clefts, and we talked about different bottles.  We discussed upcoming procedures, surgeries, and finally, I was given a paper that had an overwhelming list of different doctors who could perform my son's corrective surgery.  I panicked, wondering how on earth I was supposed to blindly decide.  Each doctor had a different method, a different timeline, a different idea on how the cleft could be fixed.  Some did it as soon as possible, some required a lot of work and a lot of time.  Some would leave scars, and others would make sure the scars were minimal, but they were the ones that took the longest.  I didn't know what was best.

I finally ventured onto my Kids with Clefts Utah facebook group, and started reading everyone's posts.  I wondered who had chosen which surgeon, and finally narrowed my choices down to two plastic surgeons:  Dr. Rodney Schmelzer or Dr. Faizi Siddiqi.  I was told I could meet with both, and see which one I clicked with the most, and then I could choose who I wanted to go with.  Dr. Siddiqi was the first doctor I called, and I scheduled my meeting with him, which was about a month away.  Next, I called Dr. Schmelzer's office, and got my first appointment to meet with him in two weeks.

The meeting with Dr. Schmelzer went great.  I liked what he said, and what his credentials were, and more importantly, I loved that he had free team consultations, meaning the Ear, Nose and Throat (ENT), orthodontist, and him all met together with the patient to discuss progress and the next step (as opposed to scheduling these appointments separately, and dealing with the hassle of insurance and ever so precious time).  I ended up canceling my meeting with Dr. Siddiqi, because I knew Dr. Schmelzer was the right fit.  He was so kind as to give me a Dr. Brown's specialty bottle, and some advice on how to use it.

I was finally beginning to feel in control of my situation.  I officially had my Cleft Team. He instructed me to send him pictures of my newborn as soon as possible so he could see what work needed to be done, and then to come up with a timeline.

Mourning

I went through a mourning period that lasted for several months.  There were so many nights that I woke up, wide awake at three in the morning, and all I could do was look up pictures of other bilateral cleft children online.  Don't do that.  The pictures there gave me nightmares, children completely distorted by horrific mouths and off-set teeth, noses bent oddly out of proportion.  I started believing I was growing a little monster, and I resented ever becoming pregnant.  Maybe I WAS too old to be having children.  Maybe the medication my obstetrician had prescribed somehow messed up my baby's development.  Or was it all those days of missed prenatal vitamins?  I had messed up, and my baby would never find happiness, and would lead a miserable life.

It didn't help that my parents were in a state of shock.  Instead of comforting me, or helping me find out more information, they began ignoring my pregnancy, never mentioning my son, or asking how I was feeling.  I felt like I had been plastered with a badge of shame.  I resented them, and avoided them whenever possible.  I couldn't face them, certain that they felt I had brought dishonor to their family.  They had already expressed concern earlier on in my pregnancy at me having more children, worried I wouldn't mentally or financially be able to care for them.  They had no faith in me before, but this?  This seemed to be the final straw of their disapproval.  With my husband gone at work all day, I felt completely and utterly alone.

The day I found out about my baby's cleft, I had a very difficult night.  Most of it was up, crying and worrying.  I thought about how all of my other children's births had been announced proudly on facebook, accompanied by about a thousand pictures of my newest bundle of joy.  I wondered how I was going to even do that.  Would my friends be horrified when they saw the broken face of my son?  I knew they were going to judge me for having an ugly baby, to talk behind my back about the tragedy of having a cleft baby.  They would feel sorry for me, and smugly look at the rosy, perfect little lips their own babies had, and post all of those pictures for me to compare my own child to.  But I knew that if I was ever going to get through this, I was going to have to have the support of my friends.  So, late that night, I took a deep breath, and announced the news.  The following is the post I wrote:

This is a difficult post for me, because it means putting my vanity and pride on the line. Every mother's desire is for the world to love and accept her children, to see their beauty and perfection the way she sees them. Today at my ultrasound, we found out that our sweet little son is going to be born with a bilateral cleft lip and palate. My heart was crushed, because I knew what it meant. Not only will I not be able to nurse him, but he won't be seen as beautiful and perfect. I'm so scared for the looks he'll get, I'm scared for the difficulties he'll face, and for the surgeries ahead of him. I guess the truth of it is what if I don't see him the way a mother hopes to see her new child? There's been lots of tears today, lots of fear and doubt.


I was flooded with love and support.  I felt like I had hundreds of arms around me, ready to boost me up and help me through this.  It was a relief, feeling like I had people who would be there to cry with me and encourage me. Some friends gave me names of their own friends who had babies that were born with clefts.  Two of them messaged me with their own stories, and shared some websites with me.  I joined a facebook group called Kids with Clefts Utah, and another one called Cleft Mommies. I found a few blogs, and was able to look at pictures of other people's beautiful babies.  They looked nothing like the original pictures I had found online, which was a huge relief.  I was finally on my way to getting educated and a establish a good support group.  It didn't always make it easy, though.  It didn't take away from the fact that I was going to have a baby that was disfigured.

There were some days that I breathed easy, and felt blessed that I had been given a great gift of overcoming the trial of fear and worry.  But then I would be overcome by feelings again of grief and fear and shame and guilt, and every other negative feeling you can possibly feel.  It was a terrible roller coaster ride of feeling at misery's depths, and then rising above them in comfort and peace.  Eventually, as my due date approached, the fear of having to deal with a cleft was gone.  I had met with my plastic surgeon, Dr. Schmelzer, in Salt Lake.  I was given two different specialty bottles to try:  a Johnson-Mead squeeze bottle, and a Dr. Brown's bottle.  I had a website to research:  www.cleftopedia.com.  I was armed with knowledge and had a cleft team.  All that was left was meeting my baby.  But there was a little problem.  I didn't want to meet him.  I was scared to look at him.  I had two more ultrasounds to check on his health (due to my age), but his cleft was covered both times.  I had no idea the extent of it, and was left wondering and worrying.  How on earth would I feed him?  How on earth was I to love his face?  What if I didn't love him?  I wasn't looking forward to the birth at all, and I felt like the worst mother on earth.  I knew I still had a lot of healing to do.

The Ultrasound

I was almost 35, pregnant, and considered to be of advanced maternal age.  I was due for an ultrasound, the 20 week one where you find out the gender of your baby, and I was so anxious.  I'd already had 4 boys and one girl, and I was almost pretty certain that this was going to be a girl.  It had to be, since I'd already given away all of my boy clothes.

The day before I went in, I was struck with the thought that this 20 week ultrasound WASN'T just about finding out the gender, but checking up on the baby's overall health and development.  I couldn't believe I had never even thought of that prior to this, especially since I was such a seasoned mom.  Either way, in the back of my mind, I was preparing to learn that this baby just might not be perfect.

The big day arrived, and my husband and I anxiously waited to be called back.  I was incredibly nervous, especially since my obstetrician had sent me for a specialized ultrasound...just in case.  My baby was probably going to be just fine, but they had to check things out, just to be sure.  Once we were called back and the warm gel was on my stomach, my eyes searched the monitor, trying to find the baby's face, hands, and gender.  But my ultrasound technologist had her own method, and I was forced to wait.  By the time we made it to the face, I was dying to see the little nose and mouth.  She scanned over the face multiple times, but I just couldn't make any sense of what I was seeing.  I had seen enough ultrasounds to feel pretty confident in deciphering the images, but for some reason, this one was just a garbled up mess of grays.  I made out a little tiger cub's face, but surely that wasn't right.  After a minute of searching for a clear image of the face, she moved on to other parts of the body.  It was a boy, and I tried being excited, but the weight of disappointment clung a little bit to my heart.  I so desperately had wanted my daughter to have a sister, someone to share her secrets and crushes with, someone to have as her best friend.  We looked at his spine, his little feet and hands, then back up at the face for a clearer shot.  I figured she was trying to get the best picture for us.  But no matter what, those little lips and smooshed up nose evaded us.  Or so I thought, until she informed us that it appeared that our son had a cleft lip.

Those words should have hit me like a ton of bricks, but they didn't.  Sure, I was disappointed, and I would probably cry later, but for now, I felt I could be strong.  I had a friend whose baby had a cleft lip, and after it had been repaired, it really looked good!  I was okay.  As we checked out my baby's face closer, she pointed out where the cleft was, and said she wasn't exactly sure, but it looked like maybe it was a bilateral cleft, where BOTH sides of the lip were split.  It was then that I realized I WASN'T strong, and I broke down and cried.  She left to get a doctor who could give us more information, and my husband and I were left together to mourn the possibility of a defected child.

When we finally left the office, I felt heavy with the burden we were about to face.  I regretted ever having announced my pregnancy, because I didn't want anyone to know.  I didn't want to look at anyone, and I most certainly didn't want to talk to anyone.  My mother-in-law was babysitting our kids, so when we walked into the door, I hid in my bedroom and cried while my husband shared the news with her.  I ignored the ringing phone for the next few hours, resenting all those nosy people trying to pry into my life.  In reality, all they wanted was to celebrate the gender with us, but to me, it was having to admit to them that I was unable to create a perfect baby.

It took hours of crying and trying to gather strength before I was able to call my parents.  I told them the gender, and then timidly told them that he had a cleft.  I expected sympathy, reassurance, or something to find some strength from, but I did not expect the laughter from my dad.  "Good one!" he said between chuckles.  I froze, not knowing how to even proceed.  The tears that exploded were the only way he knew I was serious.  It was at that moment that I felt I was completely and utterly alone on this journey.