I had two concerns when I was pregnant with Kate:
- That I wouldn’t be able to breastfeed.
- That she would be born with a cleft palate.
Both came true.
I had absolutely no reason to think either of these things might occur–no family history of issues, no related medical concerns, nothing. To be fair, I wasn’t aware that these two things went hand in hand–you can’t have #2 without #1. I also have to admit that at the time I thought a “cleft palate” was the lip deformity (which I now know is called a cleft lip; a cleft palate is related but different). My first concern was triggered by society, no doubt. What triggered my second concern was hearing during my pregnancy that a friend of a friend had a baby who was born with a cleft lip and palate. Once that worry was planted I just couldn’t shake it.
Now here’s what’s strange about that: I’m not usually one to worry.
Once during my pregnancy my amniotic fluid levels were reading low and my doctor seemed concerned but told me not to worry. So I didn’t. He followed it up by urging, “Don’t Google!” So I didn’t. My general opinion is this: I’m not going to spend my energy worrying about something unless I have good reason. A week later my amniotic fluid levels were re-measured and everything looked great. It turned out there was no reason for worry and I was glad I hadn’t wasted my time.
I’d heard so many different stories about babies being born with birth abnormalities when I was pregnant–everything from Down syndrome to neurological issues to heart conditions, you name it. It seemed like every week I was hearing or reading about another baby being born with some type of medical condition or concern. True to form, none of this shook me. I never once thought, “What if Kate has that, too?”
Until I heard about the baby born with a cleft palate.
It was the one thing I just couldn’t shake, although to be honest I wouldn’t say I dwelled on it, either. It was just there, somewhere tucked away in the back of my mind, and maybe once a week (maybe less?) it’d pop into my head and I’d ponder it for a minute and then put it away. My most vivid memory from our 20 week ultrasound is when the technician said, “Palate looks good…” as she moved the wand over my belly. I remember breathing a sigh of relief and thinking, Thank God. Afterwards, I taped Kate’s ultrasound pictures to the side of our refrigerator and sometimes I’d catch myself staring at them, looking for any signs of a lip deformity…and then I’d snap out of it and go about making dinner.
My unfounded concerns about not being able to breastfeed far outweighed my unfounded concerns about cleft lips and palates. I read as much as I could about how to get a successful latch and the importance of immediate skin-to-skin contact. I never read a thing about cleft palates. I talked to all my mom friends about what I needed to know for breastfeeding and how long it took to get the hang of it and what nipple cream they recommended. I told one friend one time that I was having these silly cleft palate worries.
Toward the end of my pregnancy my breastfeeding worries had completely obliterated those pesky little cleft palate concerns and I don’t think I thought about the latter at all during those last few weeks. More than anything I was just so excited to meet our little girl.
It’s impossible to think you could love someone as much as I instantly loved Kate.
Immediately following her delivery the hospital pediatrician looked her over, gave her a clean bill of health, and then handed her to her Daddy who brought her to me. Every pore in my body radiated bliss from the moment I saw her and held her in my arms. Our daughter had arrived.
G and I decided to have Kate spend her first night in the hospital nursery. It was a tough decision to make, but we’d barely slept in two days and I was ridiculously drugged and immobile thanks to my c-section. Kate’s safety was my top priority and I was hell-bent on making sure someone (who was awake and not drugged) had eyes on our precious child at all times. We agreed to have Kate go to the nursery, but requested she be brought back to me throughout the night to practice our breastfeeding.
The next morning the nursery nurse brought Kate back to our room for yet another feeding and I was ecstatic to be reunited with our little girl. I was holding Kate in my arms as the nurse gave us a brief report on how our last two hours apart had gone and then casually added, “I do a routine physical on all the babies in the nursery and I noticed last night that your daughter has a cleft palate.”
Greg and I looked at each other, then back at the nurse. After a second of silence I replied very matter-of-factly, “Okay. What does that mean, and what do we do about it?”
The nurse informed us that she had already called our pediatrician and he would be in later that morning to examine Kate and answer all our questions.
Would you believe it if I told you I wasn’t upset?
I really wasn’t. I mean, I heard what the nurse said, but I just kept looking at Kate and all I felt was sheer happiness. I remember later confessing to a friend that I think that nurse could have came into our room that morning and said, “Excuse me; I noticed your daughter has a third arm growing out of her back…” and I probably would have beamed with pride and said, “She’s advanced.”
You just couldn’t tell me there was something wrong with our precious girl.
The next week of Kate’s life was a whirlwind of hospitals and specialists while Greg and I got all our questions answered, including finding out that breastfeeding was not an option for us due to Kate’s cleft palate. It was official–my two pregnancy concerns had become realities. Only now they were replaced with much bigger, significantly more important concerns:
- Helping our daughter overcome this challenge.
- Making sure she knows she has been loved unconditionally every moment of her life.
A few months later I was talking to a friend who asked how Kate was doing and I gave her my proud update. She asked about Kate’s cleft palate, so I filled her in on that too. Then (in regards to Kate’s cleft palate) she said, “So other than that, she’s perfect.”
To which I firmly replied: “No. With that she’s perfect.”
I am typically a ‘silent’ follower – but I just had to comment! First off – Kate is absolutely beautiful!!! Secondly -“She’s advanced” – made me laugh out loud at 7am
My 7month old is ‘learning’ the word “NO”. The other night before dinner he was trying to crawl out of the dog door so I told him “No” and for the first time ever my precious baby boy flipped over and started kicking his feet and crying. Yep – he threw his first fit. I say to my husband “Oh my – he is throwing a fit like a two year old”….to which my husband beamed “He is so advanced.” 
and just as you said – even with fits we think he is perfect!
Hi Dusty, I am so glad to hear that your baby girl is OK. I was following your “tweets” and was sad to hear she had a rough few days but glad that everything is better and that she is on the mend.
My daugter was born with a huge open wound on the top of her head from a rare dermatological condition called Acutis Aplaysia. We were devestated at first and so worried about her getting a staph infection while we were in the hospital. There were even a few doctors at the hospital that examined her that told us depending on the severity of the the wound, there was a chance of brain damage. It was rough few weeks for us in the beginning with numerous doctors appointments. Thankfully, our daughter did not incur any brain damage and her sore finally healed nicely. She does have a obvious scar ball about the size of a nickel at the top of her head with no hair growing out of it. Our pediatrician feels that plastic surgery should be able to take care of it when she is older. I can fully understand how you feel, to us, our daughter is perfect and nothing will ever change that.
So glad Kate is doing well, I am so sorry that your family had to go through that, but like you said, she is a perfect little girl and you are very blessed!
Karen
Isn’t mama’s intuition amazing? When I was pregnant with my daughter they said everything on the ultrasound looked great but I kept looking at the picture and obsessing about her umbilical cord. On the way to the hospital I kept saying “I feel like this is going to be a c-section. I just want her OUT. I want the doctors to get her OUT.”
Sure enough, during my induction her umbilical cord burst. It was terrifying. She spent 2 months in the hospital.
She’s doing so much better now, but that intuition haunts me. In your case, it was probably better not to know in advance. Why worry when obviously Kate is a superstar?
Anyways, I wanted to reach out because my daughter has pretty serious feeding issues due to her birth and subsequent reflux and I know feeding isn’t easy for Kate either. If you ever need to chat about it don’t hesitate to get in touch.
You are so right. Kate is perfect in every way!
This is a great outlook for a mom to have. I mentioned before in another comment that I was born with a cleft lip and my mom always loved me unconditionally and always showed me off to people. She was so proud of her baby and even if they pulled back a bit because they didn’t understand what was wrong with my lip, she always said I was perfect looking and raised me the same as she would have if I didn’t have a cleft lip. It’s a bit different with the palate because people can’t see it but it’s a great attitude to have because of any challenges you’ll have with her moving forward…
Kate is absolutely perfect!
God bless y’all! You are so good to remember that the little issue is indeed little in the grand scheme of things and you are so blessed to have a healthy baby girl!
Beautiful, mama.
Great, just got my baby back to sleep after her feeding…sat down at the computer to do some catching up on blogs and you were first read…now I’m crying:) Dusty, you’re a wonderful mom!!! And have a beautiful baby girl! Thanks for sharing this with us. PS. Yesterday was Maura’s 2 month check up so she got 3 shots…and I thought that was hard;)
Dusty, I’m so amazed at your strength, courage and your ability to put all this into words. You’re a fabulous lady. Isn’t the mind of a mom a crazy thing? I’m really fascinated by the fact that you “predicted” the challenges you would face. It sounds crazy, but I think deep down I knew Tommy was going to have craniosynostosis. He had a weird zigzag on his head in his 11 week ultrasound and no one said ANYTHING, said everything looked great, even said his skull was perfect when we mentioned family history – but I couldn’t shake the thought that he’d have something wrong with his head. Intuition for sure. How’s Kate’s recovery going?
This story reminded me of a story the my mom likes to tell about my own birth. I was born with a huge, bright red birthmark on my arm (and when I say huge I mean it’s still about 2 in x 4 in and since it was bigger when I was born it looked like it was eating the lower half of my arm). When she saw it my mom was concerned and asked the nurse what was wrong with me to which the nurse replied “Nothing, she’s perfect.”
Aww, what a beautiful post! Kate is perfect. I hope she’s recovering well from her surgery!
Dusty… I had a similar thing happen to me. I was so worried that my son Henry would have autism. Even before he was born that was my ONE big fear. Guess what? A week ago he was diagnosed with autism. My reaction? Very similar to yours. Acceptance and not really caring. He is perfect. Even with autism.
Thank you so much for sharing this story. I don’t know what makes women just know, but I believe that we really just do sometimes, and your experience and your commenters experiences are just more examples of something mysterious, yet quite real at play.
I hope the post-procedure recovery is still going well for Kate and for you guys. Gold stars for all of you!
jbhat
The last two “concerns” you listed and your response to your friend made me smile and tear up! You are a wonderful mommy and Kate is very loved!
love this post!
She is total perfection, and you my dear, are the best mom I’ve witnessed in a very very long time. Your strength and positive outlook on everything is so admirable. You are my hero, Dusty.
Love you.
I think I would have had the same reaction to your friends comment. A mothers love is blind guided by heart!
As a cleft parent myself, I related so strongly to your reaction when you found out.
We escaped the cleft palate but got hit hard in the lip department.
And Kate, just like my Gabriel is positively perfect.
I hope she recovers beautifully from her surgery and soon this will all be such a distant memory!
I so loved reading this, because I feel exactly the same way about my daughter who was born absolutely perfect, too! I absolutely believe that God gives us perfect babies and he doesn’t make mistakes. Hugs to your perfect, beautiful Kate!
What a sweet post! Kate is a lucky little girl to have such wonderful parents
It is one of my biggest fears that when our girl is born in January, there will be something “wrong” with her and we won’t bond. I’m not afraid about there BEING something wrong, though, I’m just afraid that if there is, I WON’T feel that sudden, overwhelming sense of love and perfection.
Anyway, so glad perfect Kate’s surgery went well!!
all you ladies out there who are scared about the bonding because your child has something “wrong” please go to kelli hamptons blog and read nella’s birth story it is truly heart warming but a warning it will make you cry and cry and cry! http://www.kellehampton.com/
Nicole – thanks for sharing that link – what an incredibly moving and wonderful story of love
These wonderful babies and wonderful mommas are ALL so lucky to have EACH OTHER! It is inspiring (and definitely made me cry!)
Thank you so much for your comments and for sharing your own stories. I am so touched!
@Skyelynn–What a great story, lol!
@Karen–Oh my goodness, it sounds like you were certainly put through the ringer those first few weeks! I’m so happy to hear your daughter is fully healed and doing well now. That’s wonderful news!
@Carrie–Wow, that is such an incredible story! I’m so glad to hear your daughter is doing better now. And you’re right, I’ve thought about our situation and I’m glad that it was something we did not know about in advance. Is your daughter still having feeding issues or has that now passed? We’re lucky in that Kate has finally outgrown her reflux, thank God. It may seem crazy to say, but up until her surgery that damn reflux gave us WAY more stress and heartache than her cleft palate ever did!
@lealou–I am grinning from ear to ear reading that about your mom. Thank you so much for sharing!
@Sarah–Oh sweetie, three shots are hard, and you’ll never hear me say otherwise!
@Emily–I don’t want to jinx it, but I think we may finally be out of the woods! Thanks for asking! I hope things are 10% back to normal with T. I’ve been thinking of you guys!
@(another)Kate–Another story that has me grinning from ear to ear. I love that!
@Chicago Mom–Good for you! I work with children with mental health issues and I’ve always said that labels don’t mean a damn thing. Your child is your child. Their behaviors, their attitudes, their feelings, their smiles, the sound of their voice–THAT is who your child is. Not some diagnosis on a piece of paper. Your son may have been diagnosed with autism one week ago, but he’s still the same boy he was one week and one day ago. Hugs to you Mama!
@Beth–Woman, you already know how much that meant to me. Thank you so much. :bighug
@Kelly–I hope the same for Gabriel!
@Ginger–My best advice would be to HAVE NO EXPECTATIONS. Just be in the moment, and whatever happens happens. You may feel that instant bond, and you may not, and either response is 100% NORMAL. Best wishes to you in January!
What a beautiful post. You are lucky to have that perfect girl, and what a lucky girl she is to have you.
I am “de-lurking” as I have been a silent follower for about a year. This post made me tear up and reminds me of my own birth story. I was born with a teratoma tumor that left the right side of my face crushed and I had 10 reconstructive surgery before the age of 13. My parents loved me unconditionally, never treated me differently, and never let me feel sorry for myself. Today, you would never know I was even born with a birth defect except a few scars.
Kate is so lucky to have a mommy like you and yes, she is absolutely perfect. Thank you for sharing your story, you have touched so many people.
I’m so glad that you shared that story. My nephew was born in 2009 with a cleft lip and a cleft palate. He was, and still is, the most beautiful thing I’ve ever laid my eyes on. Because his palate was full on, my sister had a very difficult time dealing with the “what would other people think?” phase…she worried that they would think she was an awful parent that did something to her baby during pregnancy. But the love she received from our family and the support that she continues to receive has helped her tremendously. My nephew has undergone his second surgery (he just turned 1 in Sept.) and is already healing wonderfully. They’ve forged his lips together and the roof of his mouth. His next surgery, when he’s about 3 years old, will entail rebuilding cartilage in his nose and continued work on the palate. But he’s a spunky little boy full of happiness and I know he’s strong enough to get through all of his surgeries at such a young age.
Thanks Good Egg!
@Jen–Wow. Thank you so much for sharing your story. It sounds like both you and your parents are such strong people. Hugs to you!
@Ashley–I wish your nephew all the best, and hope he gets to be done with those damn surgeries soon.
Thank you so much for commenting!
i have an 8 month old and i know that the hardest thing for a parent to deal with is knowing that their child is in pain and not being able to immediately fix it.
thank you for sharing your experiences. i am praying for you guys and for Kate’s complete recovery.
God bless you guys!
I am a cleft mommy myself. My son was born with a severe bilateral cleft lip and palate. He is perfect in every way. I love him more than life itself and I could not asked for a more beautiful baby. Our babies are fighters. I hope you will join us over on the Babycenter Cleft Lip and Palate Forum.
http://community.babycenter.com/groups/a56125/cleft_lipcleft_palate
We have a large group of wonderful mommies who are on the cleft journey and we are able to support one another and offer great advice to one another about our perfect little angels.