Now that the 9 month journey into motherhood had come to fruition, my immediate focus was on that precious baby girl who depended solely on us for survival!
When Sophia was born and placed on my chest for the very first time in the delivery room, the nurse placed her on my breast to see if she would latch on. As hard as she tried, and boy was she strong-willed and determined to latch on, she simply could not. Her cleft lip did not allow the proper suction needed to be able to breast feed. It was sad for me to see her efforts fail, but this was something I had already been prepared for well in advance. In the hospital I was taught to pump and a lactation nurse assisted with the extraction of that very important colostrum. Though it wasn’t much, every little ounce was helpful and fed to her via syringe. I was able to pump for just a few months because my supply would diminish with each passing day. I have a very vivid memory of pumping one early morning at home, for over an hour only to spill my entire supply…boy did the phrase “don’t cry over spilled milk” take on a new meaning for me!!! I didn’t have enough milk to store, so I would pump, then feed her immediately with her specialty, Haberman bottle. We alternated between breast milk and formula.
At two weeks we had our first appointment with her dental team. This little person who I vowed to protect was scheduled for a dental impression in order to create a custom mold, which would enable them to make a mouthpiece (similar to a retainer), that would assist in closing the gap prior to surgery. It gradually applies pressure to lessen the severity of the gap and also helps shape the nose prior to surgery. The process of holding down a 2 week old while they fill her mouth with goo and force it closed in order to create the impression was not a pleasant experience to say the least. I did not have the courage to hold her little arms down while she screamed bloody murder and everyone just sat there counting down with the clock. The impression had to harden enough to be useful and if we weren’t patient and didn’t wait the allocated time, we would just have to repeat the already gut wrenching process. As I said, I was not strong enough to partake in this procedure (not the first time anyways), so daddy had to step in and take charge while I cried by myself in the back of the room. What seemed like a lifetime of helplessness to a new mom, was actually completed in under two minutes. The doctors and nurses were an amazing set of people with nothing but compassion shown for all the parents going through this process. We had 4 babies going through the process at the same time who were roughly the same age. If I can recommend anything to someone in my shoes it would be to have a bottle ready at the end of each procedure, this saved us every single time. The process is not painful, but it is very stressful on the little one AND the parents. In addition to having the baby’s bottle ready, you should also consider having one waiting for you at home! 😉
Sophia started with roughly a 13 mm gap and went through several appliances (NAMS) before surgery. We had visits once a week and new appliances were made as needed, we went through about 5 or 6 in total. Since their skin is so fragile, a special tape is placed on each cheek to avoid the constant ripping of the pieces that are changed numerous times throughout the day. As you will see in the pictures below, the appliance has a piece that sticks out which is then used to attach rubber bands and tape on her check to create the pressure required. The piece was held together with glue that made it stick to the roof of her mouth. The longer the NAM stayed on, the quicker and better her gap would close. We were very strict on following doctors orders, she even slept with her appliance. I found feeding to be a little easier as she now had a makeshift palate which assisted with suction. We did however go through quite a few nipples which were not cheap or easy to find at the time. I believe they are now sold in local baby stores but back then there was only 1 place on-line that sold them. After about 4 weeks of wearing the NAM, they added a piece which went in her nostril. This piece was responsible for opening, stretching and basically re-shaping her nostril which was flat at birth. She took to the NAMS quite easily and never complained or tried removing them. I think it was our constant use of the piece that just made it second nature to her.
Our dentist commended us for being so strict and staying on top of it throughout the 5 month process. Turns out Sophia broke the record for having the fastest closure on her opening. I believe her gap was less than 5 mm when we were done prior to surgery.
Suffice it to say we did not sleep very much for the first 5 months, between pumping, feedings every 3 hours and constantly checking to make sure her mouthpiece didn’t fall off and get lodged in her throat. In order to be able to check on her constantly, we decided to bring her to bed with us and kept her in a portable carrier so we would not roll on top of her in the middle of the night. This worked extremely well for us.
The first five months flew by. Our baby girl was flourishing and her little face started to take on a new look with each passing day. Her gap was closing. Her nose was expanding, and we could clearly see the difference that her NAM made each and every day. She was growing and hitting all her milestones. She was eating. She was laughing and she was just the happiest baby on the planet. Her smile truly lit up the room and believe it or not, we knew we were going to miss her face after the surgery, we just didn’t know how much until it happened! In my next blog I will talk about her surgery and our experience in getting through it. For those of you going through something similar, try not to jump ahead of yourselves, this is a very long journey. Take things as they come and enjoy time with your baby. Take lots and lots of pictures because they change so much every single day. Take baby steps with your child and enjoy the ride. Much love to you all! ❤
Hello everyone and thank you for reading my story. I hope I am able to share some insight and depth into perhaps one of the most difficult times in a womans life. I hope I am able to relate in some way and help you through your journey as an expectant parent of a child who requires special needs! Remember to always keep the faith and let your experiences lead you to your destination. No matter where that journey takes you, I believe it is already written in the stars, so embrace it and enjoy the ride!
My journey into Motherhood was not an easy one. I suffered a miscarriage at the age of 29, my very first pregnancy (this has a story of its own saved for a later time). I was devastated to say the least. I lost my precious baby boy at home when I was 18 weeks pregnant and to make matters worse, it was on Christmas Eve… as you can imagine, my life was forever changed on that day…
A year later history would sadly repeat itself and I would lose my second baby at 12 weeks gestation, also at home. It was at that point the doctors decided to actually investigate the cause of my miscarriages because believe it or not, one failed pregnancy does not require much research as it’s considered “normal”. WHAT!?!?! This is not something a first time expecting mother ever wants to hear or accept. I was frustrated. I wanted answers. My first baby was born at home and he was alive and breathing for several minutes so clearly SOMETHING had gone wrong! Later test results would confirm he was healthy and growing at a normal rate. So what had happened?!?!?! I would never know until it sadly happened for a second time.
It was at this point that a series of tests would be performed to figure out the nature of my miscarriages. I had many procedures done during this time. For starters, my doctor ordered a Hysterosalpingogram which is an outpatient procedure where dye is injected into the uterine cavity/cervix, to check for abnormalities. In case you are wondering, it was NOT a pleasant procedure and I remember wanting to back out all the way to the examining room. But hey, I wanted answers and I didn’t want to expose myself to another potential failed pregnancy so I was willing to do whatever it took to get to the bottom of it. Off I went, with tear filled eyes and a terrifying fear of bad news that would impede another pregnancy. Luckily for me, the test came back normal!
After dotting I’s and crossing T’s, it was presumed that I “might” have an incompetent cervix which simply meant that my cervix was too weak to hold an otherwise healthy pregnancy and would open prematurely with absolutely no warning and no symptoms. Well I wasn’t very convinced that this was my “malfunction”, but was told it was “likely” the cause. My doctor assured me that my next pregnancy would go full term and that he would do everything in his power to walk me through every step towards a successful delivery. A cervical cerclage would be imminent in order to keep that baby nice and safe for its nine month journey in my womb. No biggie, just a few stitches would hold that baby in place right?!?!?! R I G H T ?!?!?!?! By this point I was 30 and though I felt as ready as I would ever be, the timing was just not right…yet! I was not on birth control, come to think of it, I had not been on birth control for most of my adult life, nor did I abstain from “practicing” as much as possible. As you probably already know, once you get that baby bug, it is a woman’s sole mission to fill that void despite the struggles and hurdles she must face. I tried, and I tried, and I tried… Three years went by and NOTHING. I felt defeated… I felt robbed of 2 perfectly healthy babies that would otherwise be here had it not been for my “defective cervix”… I blamed MYSELF and cried myself to sleep many nights. I was just ANGRY!!! Angry at the doctors for not giving me that magic answer I so deeply longed to hear, angry that they didn’t figure this out after my first miscarriage. I was angry that everyone would toss my feelings of sorrow and mourning aside and say things like “don’t worry, you are still young, you will have another”…WHAT DID THAT EVEN MEAN?!??! So the loss of my first two babies didn’t matter? Were they just collateral damage? and for what purpose? I was so confused… I was angry that people all over the world who WERE given the opportunity to procreate, were tossing those babies aside as inconvenient mistakes. I was angry at God. I was angry at the Universe!
In 2007, just 4 years after my first miscarriage, my brother and sister in law announced they were pregnant. A few months later, 4 members of my family were all expecting their first little bundles of joy and while I tried to be happy for everyone, deep down in places I never shared, I was angry and resentful and jealous. Despite my loathing of people who played into pity parties, I fell trap to it myself. WHY NOT ME? What was wrong with me? For reasons unbeknownst to me though, I never reached out to a fertility doctor. I was adamantly against adopting, I wanted a baby of my own and if God had granted me the gift of two pregnancies in the past, then I suppose I felt it would eventually happen for me again, in a way I felt it was OWED to me. As the years went by and my first nephew was born, I gave 100% of my maternal and auntie loving self to that little being. Despite my original feelings, he made coping a little easier believe it or not. I spent every free moment that I had knee deep in his every accomplishment, no matter how small. I made a month day/birthday ritual where I would bring a cake and we would celebrate his life every single month. He was the sweetest baby boy, and he came into my life at the exact perfect moment that I needed him. I was elated to be an aunt and I filled my role as best I could. I was thankful to his mommy for allowing me to be such a huge part of everyday life with them. I was surrounded by family, I had 4 Godchildren and life just continued to move forward as it always does… My dream of having a child of my own who would call me Mommy was left in Gods hands once again.
In February of 2011, eight years later, my world would suddenly change. I lost my mother in law to Cancer that month. During her last days in hospice, we sat vigil by her bedside waiting to say our goodbyes. When my turn came, and we were alone in the room, I remember holding her hand and wishing her well into the next world. I prayed for her journey to be a smooth one. I told her I loved her, but before I was able to walk away, I felt the sudden need to ask her for one last favor. While I know this may sound selfish to some, there was not much thought put into my request, something came over me and the words were just leaving my mouth sooner that I could even process them. I thought perhaps she could intervene…some type of divine intervention if you will, and off I went. I said “If there is anything you can do for us, please help us bring a healthy baby into this world”. I promised her that I would love and care for it until my last dying breath. She knew better than anyone the struggles we had been through so what could one final wish through the soul of a dying loved one hurt? RIGHT?! RIGHT?!?!?!?! I felt a deep sense of peace after we spoke, even though she could only listen at the time and I walked away.
In August of 2011, just 6 months after my mother in law passed away, I was FINALLY PREGNANT! I was ecstatic, I was in disbelief, and I knew at the exact moment when that test was positive that my mother in law was 100%, unequivocally responsible for this great miracle in some way. After the initial shock wore off, I was immediately overcome with fear of course. My brain went non-stop with the “what-if questions”, what if it happened again, what if the surgery did not work, what if I was too old, what if, what if, what if. I am not a very religious person. I don’t attend church, but I do believe in God and I decided to let him guide me through this process once again… it was all up to him. One thing I learned through my journey, is that I didn’t have much control over anything.
While my pregnancy was the most anticipated life altering event of my life, it was also the toughest on me both mentally and physically. As promised my doctor held my hand and walked me through each and every tiny step of the way, he was another angel in my life. Hearing the amazing beat of my baby’s heart for the very first time is something I can never fully explain. It’s one of those things that you have to experience first hand to really comprehend, it was music to my ears. The sound of my little miracle’s heart, beating inside my body gave me the strength I needed to tackle this head-on. I had many sonograms throughout my pregnancy, probably two every month. Simple, everyday things like going to the bathroom became nerve-wracking for me (my first two miscarriages happened at home in the bathroom so you can imagine my constant battle in dealing with everyday life necessities). At around 16-18 weeks I had my surgery, they stitched me up and sent me home that same day. Once home I had to endure weekly shots of progesterone to keep that uterus healthy and growing, we were not taking any chances. Those weekly shots were not pleasant, but I did anything and everything to keep that baby safe. As if that wasn’t fun enough, I was not allowed to have sex for the duration of my pregnancy, we didn’t want any contracting whatsoever in that precious, life-filled uterus. My pregnancy was moving right along… I was following doctors orders and taking things as slowly as possible. During my pregnancy this time, we discovered I had a gene mutation of the MTHFR gene. For purposes of pregnancy, this meant that I had a folate deficiency, my body was not able to convert folic acid which is so important during pregnancy. This mutation is also linked to infertility and miscarriage and potential risk factors for the unborn baby. Things were starting to make sense now…
IT’S A GIRL!!!! We were over the moon with joy when we heard the news. While the sex was really irrelevant to us, being able to visualize a baby girl just made those next few months that much more REAL. Regardless of the sex, we just prayed for a healthy baby. If I didn’t mention this before, can you guess what my baby’s due date would be? My daughter’s due date was the same day of my Mother in law’s birthday, how’s that for coincidence? MIRACLES DO HAPPEN and God works in mysterious ways. I felt beyond blessed. I took it as a sign of good things to come!
At around week 20 or 22 we were sent to a specialist who would perform that in depth ultrasound where they check for abnormalities, etc. I was not worried, why should I be worried right? After all, I had seen my growing baby every two weeks via ultrasounds at my doctors office. I had listened to her heart beating every single day at home with special equipment that we had. I had seen her grow as scheduled. By now we knew we were having a girl but up until this point, we had never been able to see her beautiful face and features. Each and every sonogram (and there were many) resulted with her blocking her face from us with both her little arms, it was just her comfy position in the womb… I wasn’t nervous, just excited to maybe get a glimpse of her little face. The technician came in and did her thing… she did her thing a little longer than usual and had a look I didn’t understand on her face at the time. She told us not to worry, but that she needed to consult with the doctor who would be in shortly to talk with us. I immediately went into panic mode of course. Daddy kept re-assuring me, but I couldn’t help the deep sense of panic that was rising inside me. The minutes seemed like hours…days…months… When the “Doctor” finally came in, he introduced himself and continued with the ultrasound. Nothing could have prepared me for the words that would come out of his mouth next. This “Doctor” told us that our highly anticipated baby girl would be born with a cleft lip and a cleft palate… I SIMPLY FROZE!!!! While he tried to show us the images, I was unable to see or hear anything beyond those words. The first images that came to mind were horrible ones I had seen on TV infomercials. I had heard of this happening in third world countries, but I had never, ever seen a real life person, much less baby with this “deformity”. While he tried to show us the images, we were not able to see them on the screen, perhaps it was Gods way of shielding us for the moment. The words that came out of that “doctor’s” mouth next were the most horrifying and disgusting words I would ever hear throughout my pregnancy, he said “you can terminate this pregnancy”! WHAT DID I JUST HEAR??? For the life of me, my brain could not process what I had just heard. Let me elaborate for you, this “Doctor” did not have one ounce of a bedside manner, he didn’t throw it out there as an “option”, he was basically trying to convince us that the right thing to do was to terminate this life that had been growing inside me for 5 months. This little being whose little heart was pumping blood throughout her little body and beating constantly, even as we spoke. This little person who was growing and developing little lungs, and a brain, and eyes, and ears… WHAT WAS THE MATTER WITH THIS IDIOT?!?!?! It took every ounce of strength for me to not sit up from that table and punch him dead in his face. To this day I still regret not telling him about himself. He told us about a relative he had with this condition as if to say he would have been better off “terminated”. I could not believe my ears. While I was still struggling with all the emotions that came with the news, my maternal instinct kicked in and I wanted off this “doctor’s” table as quickly as I could get up. I told him in a very strong voice that “termination” of my BABY was NOT AN OPTION FOR ME. I held it together long enough to get dressed and out of his office until I reached the hallway to the parking lot where I simply lost it…
The drive home that day was very difficult to say the least. I could not process the information in my brain let alone tell all my relatives who were anxiously awaiting an update from our appointment. We texted everyone on the drive home because it was too difficult to speak and we shared our news. We were not prepared to discuss anything or answer any questions as we just had no answers to give. My emotions were all over the place as you can imagine, I could not stop crying and once again fell prey to my very own pity party of “why me?” After a day or so, I just came to grips with my reality. Killing my baby at almost 5 months gestation was never an option for me, so moving forward was all I could do. I googled images and did lots of research on what to expect. Our friends and family were supportive beyond belief and news that someone on both the maternal and paternal side of the family had been born with a cleft surfaced for the first time. I accepted what WAS and continued to move forward. I never loved my baby any less, now I just had a deeper connection, a deeper sense of responsibility to protect her from assholes like the “doctor” who felt she was not worthy of living.
When my OB learned the news he was shocked as well as we were, but continued to do everything in his power to uphold that promise he had made me and walk me through my very difficult pregnancy. At one point he disagreed with the “specialist” and thought he had made a mistake. Remember we had not been able to see her face on any of the ultrasounds previously done. He held my hand through it all and to confirm the results, he ordered an MRI. I’m not sure if you have ever gone through an MRI machine, but if you have, you know that you have to be very still and not move while you’re in the tunnel…it was very interesting to me that an MRI would even be recommended considering how active a baby is in the womb at every moment. This procedure was another very uncomfortable experience that yielded little results. We DID confirm a cleft, and it was thought to be unilateral, but we could not tell whether it went all the way to the nose or whether or not the palate was also compromised. We did get some images, even though they were not too clear thanks to her motion, but we started to fall in love with her all over again, imperfections and all.
The rest of my pregnancy moved along normally. I read, I researched, I embraced my new life, I bonded with my soon to be daughter through conversations of love and dedication and promises made. I talked to her all day long. I was going to miss not having her in my womb where she would always be protected…from life, from bullies, from ignorant people who would never understand. Once she was born, her struggles would start immediately, from feeding uncertainties to surgeries, etc. I was going to miss my little floating miracle but at the same time, I could not wait to meet her and see her beautiful face and hold her in my arms and kiss her millions of times a day! I kept busy decorating her nursery and washing all her clothes and getting all her things ready, my nesting was in overdrive. I enjoyed an amazing baby shower surrounded by friends and the best family a person could ever want, we were as ready as we would ever be!! My OB recommended some of the best surgeons and we scheduled appointments with all of them. We met the surgeon who would transform our baby’s face and loved him from the start. We felt confident that we had done absolutely everything in our power to embrace her welcome. My doctor felt that she had been through enough stress and we mutually decided that we didn’t want to put her through the stress of sitting in a birth canal for hours, so we scheduled our C-section for my mother in laws’ birth date.
On May 14, 2012, our little fighter had plans of her own when she decided to come 2 weeks early. My water “leaked” at 6:00am and off to the hospital we went. After confirmation that my “leakage” was in fact amniotic fluid, we were admitted and waited 8 hours for our doctor to arrive. At the time I was not a happy camper to be in labor for 8 hours. I had mentally prepared for a C-section and assumed I would arrive and the earth would come to a sudden halt while my doctor magically showed up and delivered my baby girl. Looking back now, I am thankful to have experienced contractions and thankful to have felt those feelings of “motherhood” that I had yearned for so many years. At around 2:00pm, we welcomed our precious little bundle of joy weighing in at 8 pounds, 8 ounces and measuring 21 inches. Our princess Sophia Theresa was finally born and she had a set of lungs that could be heard throughout the hospital. Hearing that baby take her first breath, even though I could not see her yet, was the most highly anticipated sound of my life. She was ALIVE. She was breathing. She had finally joined our family and completed my life long dream of becoming a mother! The rest was simply not important at the moment. When the doctor took her out of my body, his first words were “it’s a pretty big cleft guys”…I think he was trying to protect us from the shock, but I can tell you with 100% honesty that when they finally placed that baby girl in my arms I did not see her “defect” at all, my love blinders were in full force and my mission was to protect, nurture and love, not judge! When the nurse brought her to me, she was screaming bloody hell, but the instant she was softly placed on my chest there was a serene quiet that could be “felt” by everyone in the room. She looked at me with her amazingly long lashes and just laid there, feeling exhausted from her very own journey into the world. I think at that very moment both of us just knew… she knew I was her mommy and would protect her from everyone and everything, and I knew she would be my life long friend and companion. It’s amazing how a fraction of a second can change your life forever! In a fraction of a second we discovered the real meaning of TRUE LOVE! ❤
My 10 year journey could not have been possible without the love and support of my family and friends. I am especially thankful to her father with whom I share the creation of this little miracle of life. We endured so much pain and grief in our first few years together, but through it all he held my hand and supported me every step of the way. I am fortunate and lucky enough to have found such a loving, caring and patient daddy for my girl…she is a daddy’s girl through and through and I feel blessed to have them both! I had the absolute best OB doctor who I not only consider a friend, but also an angel here on earth. We are beyond blessed with the best team of doctors who have transformed our little princess into the resilient, determined, smart, planet loving sweet angel that she has grown to be in her 6 years of life.
I learned many valuable lessons through this process. I learned to stop questioning the “whys”. I struggled with that question for many years, “why me”…well why NOT me? Perhaps this was my purpose here on earth. I feel blessed and beyond fortunate that God chose ME to be the mother of such a special child. I see things differently through her eyes now. I am not so quick to judge others and pride myself in teaching her the same… to be kind and humble and caring. I empower her with strength, knowledge and understanding that beauty comes from within and that we can all make a difference in someone’s life. My favorite quote of all time is “Everyone you meet is fighting a battle you know nothing about. Be Kind. Always” – Brad Meltzer
Please follow me for more stories and pictures of our journey through the first few years of life with Sophia. I am happy to answer any questions you might have about anything from feedings, to surgeries, etc. Thank you for taking the time to read my story and I hope it was helpful or insightful in some way. Remember to always chase your dreams and never ever give up despite the hurdles along the way…