Tonight there was a comment on my cleft blog that I moderated. As I visited that blog's dashboard, I was reminded that there were a few very old posts that I had never published. I opened this one (below in italics) tonight after not opening it probably since 2007. I had written it while pregnant with Johnny. I had written it in hopes of sharing our experience of having our first child born with a cleft. It highlights the ultrasounds, surprise cleft at delivery and things that other cleft parents might find interesting. Tonight after reading the un-published post, I recalled what a negative experience I had had with the ultrasound techs and even hospital leading up to Jimmy's birth. Johnny's birth was entirely different (perhaps because I knew what to expect and I felt like I was able to take control of the pregnancy and birthing process and not be pushed around like a number as I was the first time), so I hope to someday to jot down the specifics of Johnny's birth in detail like this too. I still am hesitant to post this post on the cleft blog, it is so long-winded and perhaps too many details for some stranger to take in who happens upon the cleftnotes blog. Maybe I'll never push publish there. However, I wanted to post it here. I want Jimmy to know the story someday. He knows parts of it. And I have posted snippets of it before here on the blog. But this is it in it's entirety. When he gets older, he can read this and perhaps it will fill in the gaps:
We found out we were pregnant with little Jimmy late April 2004 after I had missed a period and we conducted a pregnancy test. I can still remember sitting in that tiny little bathroom, my husband James standing beside me and this feeling of shock wash over us as we read the pregnancy test and realized this was for real. We were going to be parents! I must admit, I first felt quite overwhelmed, but that soon turned into excitement and joy. We had only been married for 4 months, and although it seemed quite fast, it felt right.
I do remember at the beginning of the pregnancy feeling stressed at times wondering how we were going to make things work and make ends meet once we had the baby. I often wondered if this worry/anxiety caused Jimmy's cleft to be honest. I'll probably never know. The pregnancy was otherwise pretty uneventful- no major events happened and I was just happy being pregnant.
I was working at Nu Skin, a beauty product/pharmaceutical company at the time, and James was in school at BYU getting his undergrad. James knew I wanted to be able to stay at home with the baby once he arrived, so he worked hard and fast at making sure I'd be able to do so. He was accepted into a program at BYU called the Mandarin Flagship Program a month or so after we found out we were pregnant and this was a huge blessing. The program would pay for James schooling and provide a stipend for him for 2 years in exchanges for a 2 year obligation of work for the government post graduation. It was an answer to our prayers.
I did have a little morning sickness which started in my second month and lasted until my mid fourth month. I only threw up 2-3 times during the whole pregnancy though, so nothing like some mother's morning sicknesses (adding this comment in April 2011: my morning sickness with Jimmy barely even qualified as morning sickness, but I didn't know that at the time. After having true blue morning sickness with Alice, I now know what the real thing is!). I did feel a sort of "car sick" feeling that loomed during those months. I began my prenatals after taking the pregnancy test (around 5-6 weeks) and for the most part took them pretty regularly. I know there were some mornings were I forgot, just rushing off to work, and I have blamed myself that perhaps those missed doses caused Jimmy's cleft. Since I am writing this 2.5 years later, I have a bit more hindsight now which includes the following: Currently I am pregnant with my second (and with this second pregnancy I was very vigilant with taking those prenatals, as well as starting them 3 months prior to conception)- and the baby still has a cleft, I realize that this is most likely not caused by the presence or absence of prenatals, but rather something genetic is going on.
I loved getting ready for the baby. We found a second hand crib and I sewed a little crib sheet and crib ruffle, and matching crib bumper. I also made a matching cushion to put on the old rocking chair we were using. I refinished some of the furniture in the room to match the crib.
I loved getting ready for this baby, for motherhood, something I had looked forward to my entire life. I loved being pregnant. I loved feeling my baby inside me, feeling him getting the hiccups and kicking and stretching. I could tell he was going to be a very strong baby.
When I was 20 weeks along with Jimmy, we had the routine ultrasound. We were really not impressed at all though with the procedure and the way the ultrasound tech performed it. First of all, I had scheduled the ultrasound in the afternoon, the latest appointment they had open in the day so that I wouldn't have to miss much work, and James wouldn't have to miss much school. When we got there, it looked like everybody had left for the day. The tech brought us into a room and then switched us to another room and then proceeded to try and turn the machine on. She couldn't figure out how to turn it on until she finally got another guy (looked almost like a janitor), to come in and help her figure it out. After awhile they figured it out and she proceeded to do the ultrasound. James and I had so looked forward to this appointment and were anxious to see our little baby for the first time. The tech really rushed through things and even made an off color joke about our baby being a boy. Lastly, the tech didn't want me to look at the screen while she was doing the ultrasound which I thought was odd. She turned it toward her and every time I would kind of strain to get a peek she would tell me to relax and lay back down. We definitely were not impressed with our first ultrasound experience, but we just brushed it off. The cleft was never detected during that ultrasound and we left thinking everything was perfectly normal.
During my next check up, I told my OB about our experience of it all feeling very rushed and not really seeing anything on the screen when seeing our baby for the first time. He told us he would send us in for another ultrasound and that hopefully we would have a better experience the second time and get to see our baby better.
Needless to say, we went again, we did have a different tech, but it still felt very, very rushed and impersonal. I just assumed this was how all ultrasounds were. I do recall the tech saying that the baby was covering his face and being shy. Little did I know how impacting this would be on her not getting a good look at his face. Once again our baby's cleft went undetected. During the last half of my pregnancy, my OB wanted to move my due date up a week since the baby was running large. Now in hindsight, I realize that our baby was probably running large because both my husband and I are tall, big people. But I was a first-time mom and the thought of getting to see my baby even sooner seemed like a dandy thought, so I let them move it up a week. When that week came and went and still no baby, my OB had me go and get a non-stress test done at the hospital to make sure the baby was doing okay now that he was "overdue".
During that check up, they did another ultrasound and measured the amniotic fluid. They said that it appeared to be a bit on the low side so they wanted to induce me right there on the spot. I called my Dad (who is a family practice doc and does OB too) and he told me those amniotic fluid measurements they do via ultrasound can oft times be very inaccurate and I should feel okay about not wanting to be induced and wait a few more days. He knew my desires to go naturally, so I was hoping to not have to be induced. The hospital then made me sign a form that I would take full responsibility if something were to happen to my baby should this be the wrong decision to not be induced and leave the hospital that night. Talk about something to stress out a totally pregnant lady! I shed lots of tears that night, but I felt right about not jumping the gun and getting induced. I vaguely remember that being the 22nd of December.
In retrospect, I realize that this was the third ultrasound I had at this hospital. Why the cleft went undetected I will never know. Maybe it was meant to be that way. But I do wish the ultrasound techs there would have been more thorough in crossing their T's and dotting their I's and looking at my baby's face when scanning for any anomalies. It is supposed to be routine. It would not have changed the outcome of course, but it would have changed our readiness.
I had no preparation at all for what I would experience during delivery. Early detection would have meant I could have read up on clefts and understood it better and been all the more prepared when seeing my baby for the first time. Many of you reading this may have found out via ultrasound about your babies cleft. Don't get me wrong- I think it is hard to find out ANY way about your child's cleft. It is difficult no matter what or when to find out your perfect little baby will be born with a cleft. But it is in my opinion much easier to go through the shock and emotions one goes through when finding out about the cleft, before the baby arrives. So consider yourself blessed if this is your case and you have found out via an ultrasound! It makes the first meeting of your baby a lot easier, and it will make those first moments much easier emotionally on you and your family.
Me with my friend Leah, trying to get ourselves to go into labor
One week after the stress-test, I was still pregnant and during an appointment, my doctor stripped my membranes and broke my water (although he made me promise not to tell the hospital that he popped it, I guess they didn't like that). He told James and me to meet him at the hospital in a couple hours and we would have a baby! We went home packed our bags and then checked into the hospital. I began to feel giddy and was a bit nervous. I had read countless books on labor and breastfeeding. I had read "what to expect when you are expecting" from cover to cover. We had attended a couples childbirth preparation class for months prior. I felt ready, yet looking back, I realize there really is nothing that can totally prepare you for your first labor. It is probably the "best" or should I say hardest kept secret mother nature has ever had. I remember after going through it thinking, this is what EVERY mom has experienced in order to bring a child into the world?!!! How do we all survive?!
The labor was somewhat long. I got an epidural after a few hours of not being able to handle the pain from the pitocin despite my hopes to go naturally. I remember my husband holding my hand and providing me a lot of support during the labor.
My sisters and mom were there too and I appreciated their support and despite my pain, we were all having a pretty good time. When my baby finally crowned, he poked his little face out and my doctor's first words were "Did you know he would have a cleft?". I had no idea what he was saying. "Wha? What is a cleft?" ran through my head. I became totally scared and feared for my little baby. I felt almost like I was dreaming. It wasn't real- I was just having one of those crazy pregnancy dreams. I would be waking up soon...
However, it was real. I have to admit, instead of feeling so happy for having just gone through my first successful delivery, and for having a beautiful little baby to show for it. I was in utter shock. I was so scared.
In my birth plan I had asked that they place the baby on my chest and let me nurse him. I am so glad they still let me and little Jimmy do this despite the cleft that had surprised us all. It was a turning point- a bonding moment. Despite the shock and fear I had experienced minutes earlier, holding my newborn baby up close to my chest and looking into his eyes, I was comforted and told him "everything is going to be alright". There was immediate love that overshadowed the fear. And I knew this wasn't a bad dream. This was reality. This was my baby. This was pure love. And we would get through this together. There was a familiarity to him that I immediately had. I felt like I knew this child, I had seen him before, and though words can't quite explain it, I felt like I was prepared for this little one. I touched his little hand and stroked his fuzzy back. A baby! I had had a baby! A beautiful little boy. I knew he was meant to be mine.
Minutes later, they whisked him away so he could be looked over by the NICU doc. They wanted to see if there were any anomalies associated with his cleft and so they did some thorough testing. James was such a good daddy, he followed his new little baby everywhere and tried to soak in as much as he could. He attempted to learn as much as he could from the doctors and their lingo and explanations of what a cleft is, what a palate is, what sort of expectations we should have and so forth.
I was transferred to a new bed (they had to flop me over as I had no feeling in my legs from the epidural, and I feared I was paralyzed as the feeling in my legs didn't return until the next day!) and then a new room. I remember James coming back into the room with our little baby an hour or two later and we had a very heart-wrenching, yet beautiful, unified moment. We both wept. I had never seen my husband cry like that and never have since. We cried huge tears of sorrow together. I remember my husband saying "poor little duffer" and sharing how he was worried how little "junior" would be able to lead a normal life. How would he get through life without being teased? I wept tears of sadness and fear. I was so scared that I had done something wrong during the pregnancy to cause this. I was so scared I had done this to my son by not remembering to take a prenatal one forgetful day. I had just become a mom for less than a few hours, and already my confidence as a mother was shattered.
I too worried what sort of challenges he would face and how my son would be treated throughout life. He looked so different than any other baby I had ever seen. How would the world accept him? A thousand doubts raced into my head and heart. I felt so confused, I had no basis for understanding what we were dealing with- "what in the world is a cleft?" I wondered. My only background with this was seeing ads in National Geographic for Operation Smile. I had no clue what a cleft lip and palate really was and what it entailed. "Why was my baby born with this? Isn't this something that only happens in 3rd world countries?"
James and I had some time alone- just us and our new baby. We prayed. We held each other close. We held our baby close. We vowed to help him lead as much of a normal life as we could provide. We grew closer and stronger that evening- our new little family of 3. Unified in purpose and love for each other.
James went home for a bit to shower and when he returned in the wee hours of the morning, he shared with me that upon returning home to our empty house, he had knelt down and prayed and opened his scriptures and read the following verse in the New Testament: (John 9:1-3): "And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him". Never before had I been so touched by a verse of scripture. It communicated to the depths of my heart and spirit, and spoke immense comfort to my aching heart.
I had an overwhelming feeling that the Lord understood and willed the trial we were facing and it wasn't because of any sin on our part. He was not punishing me or James for any wrongdoing. I have since felt strongly that this trial was just part of our growth and journey here on earth. We have been stretched and grown in countless ways. This trial- as hard as it may seem at times and then conversely, as minuscule at it may seem at other times, this trial was ours, and this was our "new life".
Also during this time, I remembered the moment which seemed so long ago, yet was only the night before where newborn Jimmy was placed him on my chest, and I shared such a treasured, special bonding moment with him. It spoke comfort to my heart once again. Where the love overshadowed the fear. I would recall this moment numerous times to get me through what lye ahead.
A lactation specialist soon came and visited and told me that my son wouldn't be able to nurse due to the face he wouldn't be able to suck with a cleft palate. Little did she know how much this news rocked my world (in a not so good sense). I had really looked forward to nursing, even read books on it during my pregnancy. She casually introduced me to a new bottle called a Haberman and showed me how to use it. She also set me up with a pump and I began pumping breast milk for my baby. I didn't want to do it this way. I wanted my baby to just be able to breastfeed like normal. I would still put him to my breast in hopes of a miracle. But he couldn't. It was like sucking through a straw with a hole in it. He physically could not suck. And so I began to accept the fact that I would just have to pump to get him the breast milk I wanted to badly to give him. It was the unconventional way. This was just the beginning of having a whole new world opened up to me as to how the cleft would affect his feeding and anything that involved his little mouth.
One other thing I do remember vividly experiencing in the hospital is being visited by a lady named "Holly". She knocked on my door the day after Jimmy was born and I was sitting alone in my room with our baby. I am so glad she stopped by. Holly was a mother to 4 children, one of whom had a cleft. She had given her name/number to hospitals in the area to call when a cleft baby was born. Thank goodness that hospital actually followed through with the invitation and contacted her. It made such a difference to my journey. I found it so comforting to hear from her experience that it would be alright. I had a lot of well-intended people (nurses, doctors, family members, friends) telling me my son's cleft was fixable, but it was hard to believe it was all going to be okay because nobody had been through it. However, when Holly came to visit, I felt so relieved and was given a surge of hope. She had been through it. She brought pictures of her beautiful daughter and family. And walked me through some things to expect and prepare for.
I don't remember much else that occurred during my hospital stay. When I look back at pictures I see my puffy, puffy eyes and am reminded that I did lots of crying. And I tell new moms that have a baby born with a cleft, that (crying) is completely normal. It is normal to grieve during this time. I've heard other moms say "you grieve the loss of your perfect child", and that is true.
I am grateful for the incredible support system I had at this time. My husband has and was always there for me. He's comforted me and held me close and lifted me up on countless occasions where I've been buckled with fear and felt no strength to stand .
My mom stayed for a while after the baby was born and helped me learn the ropes of being a first time mom, listened to my fears, wiped away my tears, and helped me get my ducks in a row by getting things lined up with a surgeon and craniofacial team. She helped me realize my baby was still a baby, and was not a cleft. She gently reminded me of how my own actions as a mother would make an important difference on how my son would view the condition he was born with.
I also had a wonderful sister who lived in the neighboring town and I leaned on for support as well as a great group of neighbors and people from church who brought in meals and stopped by to meet the new baby, to check in on us and pray with and for us.
We didn't have Internet at home, so I would often bundle my brand new baby up up (it was in the dead of Utah winter), and put him in the stroller and visit the local library so I could use the computers there and google "cleft lip and palate". I was trying as hard as I could to become acquainted with this condition. My Dad was wonderful and sent me numerous emails full of cleft lip and palate research that had been found in medical journals of his. I remember printing off pages and pages of "reading material" that I could bring home to my husband so we could better understand. After a few weeks, despite being on a small student budget, we made room in our finances to allow for internet at home just so we could easily study more about the condition and keep in better contact with family member's on Jimmy's progress.
It was then that I came across the plethora of support groups online for parents experiencing exactly what we were going through. This made such a difference in our knowledge and understanding of what a cleft entailed. It helped us be so much more proactive in the cleft journey and it was wonderful to hear from other parents and their perspectives and cleft journeys.
Through these groups, I learned to share. I learned and yearned to reach out to others that were going through what we had gone through. I remember reading countless other mother's accounts of their child's "journey" and how much these accounts helped me along the way. They helped me see that my newborn son, although afflicted by a cleft at birth, could grow up and have a very bright and normal future ahead. These glimpses from other families made such a lasting impact on me and gave me hope. And so that is why I share this story today. That is why I have put together this cleft blog. In hopes that it will strengthen or buoy up another parent that may be experiencing any aspect of the cleft journey.
So that, in a nutshell (a very big nutshell have you) is the story of my first pregnancy and the birth of our Jimmy. I know someday Jimmy will be a father and a husband. Someday he and his wife will have children. Children that very well may or may not have clefts. Regardless of circumstances they will experience a range of emotions upon meeting their children for the first time. I hope Jimmy will always remember what a precious, sacred experience it was for his own mother and father to meet their son for the first time and embark on the journey of parenthood. And that love always overshadows fear.
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