Samantha's story
My husband Manuel and I were going to be blessed with a daughter! That's what the doctor said...as well as the 10 sonograms that he felt were needed because of our high risk pregnancy. The high risk was due to the diagnosis of my incompetent cervix. That word "incompetent" was always enough to make me feel somewhat less of a woman. It was explained to me that the two second term miscarriages I had previously endured were due to my weak cervix and not at all to anything wrong with either of the babies. Again...something wrong with ME and NOT the babies. Something wrong with me, in my heart, meant that somehow I was bad or not good enough of a person to deserve a little one to raise.
After finding out that we were indeed pregnant I had this feeling that God had
mistaken me for someone else...someone worthy (as I was not)...and as I stood in the 'Waiting For Baby' line, I felt I was really getting away with something I shouldn't. If only I was good and didn't draw attention to myself then maybe, just maybe I could have this baby. Every day that we scratched off our calendar led us closer and closer to believing that somehow we might be blessed after all.
After years of infertility and cervical problems I guess we had built up a protective wall in our hearts because we put off doing the things that normal expectant parents do...things like planning the nursery, choosing a name and heaven forbid should we go as far as to BUY anything! Instead, we tried to control the only things we could...things like good nutrition, taking in clean air, prenatal vitamins, caution not to over-exert...I needed to stay off my feet as much as possible and absolutely, positively - NO SEX! Yessir...this baby was greatly wanted...mommy and daddy were gonna risk their marriage and sanity because this baby was so greatly wanted!
We did all the right things...according to all the doctors. Our High Risk Specialist OB personally did every sonogram and never, ever mentioned anything other than how good everything looked with our little one. I remember seeing her face on several of the pictures and I'd even commented on how chubby her cheeks were...almost bulldog looking cheeks...too cute! Now I realize it's the typical look that I've seen other PRS babies have and it's because the chin is so tiny.
Anyhow, it was past the critical time for baby survival in our pregnancy and we allowed our families to throw us a shower...our friends and customers began giving us gifts...I designed the nursery...oh, how darling her new clothes looked hanging in HER closet! Then we did the big enchilada - we chose her name...Samantha... because we liked the thought of calling her Sam. We chose her middle name by combining our mother's names...Margaret and Lidia...and we came up with Marli. Cute, we thought, and our parents were so delighted. The big and the little things were done to welcome the new person into our home. We concentrated on reading as much as we could on the different ideology of raising a happy little girl....that, and we dreamed of what she would look and be like...oh, and better yet, what that first cry would sound like...gosh,
what that must feel like...heaven...pure heaven!
Since the pregnancy was high risk we needed to deliver Samantha before full-term...and it needed to be by c-section. The day finally came. Manuel and I didn't miss a cue...oh, no...we weren't going to be like those parents who take their kids for granted...we WANTED this baby...and we would prove it every step of the way! We would video tape EVERYTHING about this pregnancy.
Our trip to the hospital was beyond belief. We both agreed that surely we were dreaming. I was full of so much excitement that I didn't know how they were gonna put me under...my heart was racing and I just knew that anesthesia wasn't going to work! Well, it did...I had an epidural and all I felt were slight tugs at my middle. The doctor made play by play comments as he brought our little Samantha into the world. I don't remember much of what was said because I was having one of those little girl nervous giggle attacks! Then came the cry!!!!!!! Oh, let me tell you...nothing prepares you for the first sound of your child...no instrumental note sounds as sweet! Immediate tears
flooded my eyes.
I waited for them to do what all the books said...lay her on my chest...do that good bonding thing...I'd look into her eyes so she could see who's voice she'd been hearing for the past 9 months. She'd snuggle next to me as daddy and mommy exchanged that picture perfect look. Daddy would tell mommy how wonderful she was and how much he loved her for giving him the perfect little angel. I've seen it a thousand times on TV! Now I got to participate in this real life drama! Now was MY moment to shine! The sacrifices I was willing to make for this baby were about to begin to pay off! I was going to be unconditionally loved by my own daughter! Then all I heard was quiet...and
hushed tones began to float around the sterile air.
In my head I guessed that they chose to clean her up before showing her to me
because I continued to wait. Finally, they whisked her by Manuel's eyes really fast. I only caught a blur. I didn't even get a chance to think about why the room got so quiet...or to wonder about the doctor's comment that the baby needed oxygen. I was given morphine. It put me OUT.
I guess deep inside I was alarmed because I struggled to shake off the drug in the recovery room. I remember being told that there was something wrong with the baby. Difficulty breathing was mentioned. Cleft palate was mentioned. Oxygen was mentioned. Many surgeries was mentioned. Many doctors was mentioned. Not breathing was mentioned. I kept asking to see my baby. No one would listen! This led me to become even more alarmed! I delivered Samantha at 1pm and wasn't allowed to see her until after midnight! Finally, I pulled myself out of that hospital bed and I'm sure I had the look of a demon in my eyes because NO ONE tried to stop me from seeing her then!
I made my way to the nursery and when one of the nurses commented that our
families were under debate as to who she looked like that I realized that THEY were allowed to see and hold her before I was allowed to. I don't know why this happened...but, I think it had to do with a misjudgment on what was in my best interest. Manuel followed this misguided twit's advise, something I'm sure he'll never do again because I've threatened divorce court if he doesn't make sure that we confront our problems TOGETHER, head on, in the future. What exactly do they think happens to a woman's mind when she delivers a child?
You know, when I did finally get to see Samantha I was amazed to see that she
looked normal. What was so scary that they couldn't let me in on it sooner like they did everyone else? This wasn't BAD...nothing wrong here...I gave birth to a cute cabbage patch looking baby! It must have been that morphine after all...I'd only imagined a problem. Cleft palate? Must have been someone next to me in the recovery room...I must have heard the nurse breaking the bad news to the lady next to my bed. Whew! This didn't look so bad. I was perplexed as to why they didn't allow me to see her sooner.
Then came the first alarms from the apnea and pulse oximeter monitors. Then
came the first sight of the suction and tube feedings. Then came the look of concern in the attending nurse's eyes followed by the rush of several other nurses to Sam's bedside. They got her repositioned and the alarms were reset and all of a sudden it hit me! This WAS about Samantha. She WAS less than perfect. She had a hole in her palate and her tongue was WHERE? How was I going to do this? How was I going to do what these highly trained nurses do? How was I going to stay awake forever just to respond to all these monitors? What do they mean I can't breast-feed?
Nope, the next thing I was told was that all the beautiful things that make breast-feeding so wonderful were going to be impossible for us. Samantha just wasn't going to be able to do it. Pumping was going to be as close as I could get. So I hooked myself up. Gosh, God forgive me, I felt like a cow. The rhythmic suction is something that still makes my skin crawl. I got more and more angry as the machine made it's wheezing noises and as it seemed to suck the life out of me. Samantha was hooked up to monitors that stayed in the nursery and I was hooked up to that damn pump machine in my hospital room. Nothing intimate about this...how in hell was I supposed to make my milk let down? I felt like such a failure. I became infuriated. How could I not WANT to do this...I knew of all the GOOD breast-milk does for a little one...yet, I knew it wasn't what I had pictured in my dreams...none of this was! I not only felt like a fake mother, I felt like I was being asked to do the impossible.
We own our own business and after 2 weeks I was going back to work part-time.
How was I going to watch Samantha like a hawk so her breathing wouldn't become
blocked during her sleep, take the twenty minutes to pump and the thirty minutes to feed her and somehow find time to drink so much water that I'd feel like I was swimming in my own skin...just like the nurses advised? She was feeding every two hours, and sleeping for an hour and ten minutes in between...when was I supposed to sleep? According to my calculations there was zero sleep!
Now don't get me wrong...I was completely committed to not getting ANY sleep
just like other parents explained while I was pregnant...but, they as well as the books said that the time to sleep was while the baby slept! Those constant alarms told me otherwise! Daddy had to work...our families were scared to death of Sam...no one wanted the responsibility of keeping her alive. I was the most scared I've been in my life. I wanted this little girl to be happy just like in my dreams...I couldn't let her slip through my fingers...it seemed to all rest on MY shoulders. She looked like she was in
so much discomfort. What could I do? First time mom...didn't know any of the ropes...no one could advise me on what to expect. I didn't have any instincts because I was so dazed.
Days in the hospital passed...no cranial team of doctors came to visit me. No
advice came from anyone. Then came the time when Manuel and I tore into each
other...we usually were the pillar of salt for each other but because both of our hearts were equally involved here we were literally stunned. He looked me dead in the eye and angrily told me that he married me because I never let anyone run me around. He said he had once admired my strength. The person before him was being weak and he didn't recognize her. He couldn't understand why I couldn't just say that everything was going to be fine with Samantha. He said HE could take care of Samantha every day and that I could work instead. Although, when I said..."okay", he looked like he was caught in a lie. I told him that he was lying to himself and that I wasn't being weak...I
was just being realistic!
Finally, I became unglued...I asked for the hospital social worker. I made my case. I guess I worried her because in just a few minutes she returned with Joanne Green's phone number and print outs of the WideSmiles web pages. Hummm...I reached out and back came SOME answers. I COULD still make decisions. I wasn't going to fall apart. I called for Sam's pediatrician. I made my case and ordered him to give us 24 hour nurses. I guess I worried him because in just a few minutes he had a home health agency at our room ready to go over their policies. OKAY! Here I go!
Pumping wasn't going to work...so, I did stop pumping and I challenged anyone
to point at me and blame me for every bad streak in Samantha's future and do you know what? To my amazement everyone understood! It is such a personal decision and I guess I mentally beat myself up about it because as I mentioned before...I was a less than perfect person who didn't really deserve a baby in the first place...I was cheating by even being here.
You know, in watching our video footage you can actually tell when the reality of
leaving the qualified hands of the nurses and doctors at the hospital came, because there's a few days missing. These are the days that I wish on no one. Manuel and I promised to help any PRS parents in the future because of what we went through during these days. Later we realized that we weren't at a level 3 hospital...meaning they didn't have a neonatal intensive care unit. Because of this they weren't prepared to have a Cranial Team visit with us, let alone ANYONE who had ever experienced this before. They just weren't used to following through with a Pierre Robin baby and her family. It took almost all of 10 days for the hospital social worker to get Joanne Green's phone number to me.
I called Joanne immediately and her voice was angelic...here was a survivor...and someone I could turn to for answers. Okay, now at least I had my feet on something solid. The best advise she gave me was to accept help when anyone offered it. I took the very next person up on this, it was one of my customers whose husband happened to be a hospital administrator. She heard of our experience through my husband and, low and behold, we were put in touch with the most generous and caring Plastic Surgeon in the world.
(RIGHT) Here's Samantha's Holiday Photo...we dared to take her out for the first time to a dinner party only because one of the other guests was a friend's husband and he is a neonatologist...what could go wrong? She was around 6 weeks old here. I remember how he made me feel so good because he said the worst was already behind us...oh, how we wanted to believe it!
The Plastic Surgeon was at our hospital room within two hours of our first phone conversation. He explained everything to us. She should outgrow this breathing difficulty in a couple or three months. She would undergo palate closure at around 10 months. Next thing was to make sure that she gained weight. We had his nurse assistant's personal phone numbers in case we had any concerns or questions. Okay, we could, maybe, with plenty of prayers and lot's of reaching out, hopefully pull this off! Maybe our lives were changed forever, but, maybe it wasn't impossible.
Today, Samantha is three months old...tomorrow is her doctor's visit...we fully expect to release the nurses of their duties...Sam is no longer having breathing difficulty...occasionally she'll set off the apnea monitor, but the pulse oximeter is gone, as well as the oxygen and the suction machines that we never used. Repositioning is easy to do...and Sam usually does this on her own unless she's in a really deep sleep. She used to set the alarms off repeatedly...I shudder at the memory! We were lucky...Samantha didn't need tube feedings or a tracheostomy. We did speak to a Plastic Surgeon that the pediatrician put us in touch with for a second opinion. He did want to intubate Sam and do a jaw extraction! Thank God we followed our instincts and didn't go for it. Sam's angel disguised as a Plastic Surgeon wanted to follow a wait and see route...and because of him there's not a scratch on our little one.
Boy-o-boy don't I look cute in daddy's hands? Samantha is around 7 weeks old here. She's practicing the look that made those cabbage dolls famous!
We have given our phone number to all of our doctors and advised them to pass
it on to any cleft affected families out there that are in need of someone to associate with. My most valuable piece of advise is to trust in yourself as that little one's caretaker. If you can't make a decision because you're in a daze then DON'T! Allow the nursery to care for the baby until you are back in the saddle...that's what they're there for. It doesn't make you a bad girl! You'll reach out when you're ready...and when you are...call me! I'll be there for you :)
This is Samantha at 8 months old (left) at
her girlfriend's 1 year birthday party.
Here's Samantha (post palate repair) at 11 months old (below). Amazing how she recovered so quickly after her surgery!
Lindy
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