October 12, 2013

Dr. Google Is Not Always Helpful

I have thought about doing this post for a long time but never got around to doing it but I recently meet a beautiful little girl in the nicu who was born with a cleft lip just like Drew Bear. After talking to her mom recently about her daughter's upcoming surgery it brought back many of the emotions of finding out Drew had a cleft lip during his 19 week ultrasound. I remember the night we received the phone call from our ob telling us what the radiologist had found I googled "cleft lip". The pictures that came up scared me more than hearing the news because everything that came up on Dr. Google was from corrective surgeries done in 3rd world countries. The results of these surgeries are so different than the results from surgeries performed in the states. We are blessed with amazing medical doctors, clean hospitals with sterile equipment and surgery is completed at a very young age compared to poorer countries where surgeries often take place when the children are school age. I am writing this post in hopes that when parents learn that their child will be born or has been born with a cleft lip that when they turn to the internet they will be able to see Drew's before and afters and gain some reassurance that everything will be okay.

Before our baby was diagnosed with a cleft lip I can only remember seeing one other baby who had one. It had been a couple months prior in the nicu I work at. This little girl only spent a couple of days on earth before she was called home to heaven. Not only had she been born with a large cleft but also chromosomal abnormalities that were not compatible with life. So when the call came the evening of our ultrasound and my doctor stated that there was concern that our baby had a cleft I kept seeing this little girls image. She was absolutely beautiful but her bilateral cleft was what one saw when looking at her. I was so scared for my unborn child and what his/her future would be like.  After telling Paul it was totally fixable and trying to pull off the "this is no big deal and things could be so much worse" attitude I called my mom and the upbeat outlook I had quickly dissolved as she and I talked about the increased chance of chromosomal abnormalities and other deformities that come along with a baby born with a cleft due to everything that is going on when the face is developing during the seventh week of gestation. I then turned to the internet to start searching for pictures of before and afters of babies who had corrective surgery done on cleft lips. The pictures did not help. Most of the pictures were from Smile Train, 'an international charity that provides cleft palate surgery to those in need'. Now this is an amazing organization but many of these children would have benefited greatly from having surgery earlier in life due to the way that the skin toughens on the face as a child gets older. The website also shows some of the largest cleft lips and no one wants to think about their beautiful child being anything but "perfect". I quickly learned that a high school friend of Paul's had recently had a daughter who was born with both a cleft lip and palate so I quickly emailed him needing any reassurance I could get in regards of what to expect. Other than Baby Aubrey I did not know a single person who had a cleft. There was not an adult I knew besides a tv actor that my mom told me about who had surgery many years ago. It was hard to imagine what our baby would look like as he got older after having his/her lip repaired. Here is part of the journal entry I did on the night after getting the call and searching the internet for pictures of babies born with cleft lips; 


"This evening we got a call from Dr. Murphy with some sad news. It appears you may have a cleft lip. Your palate looked okay and your other organs looked perfect. We are leaving on vacation in the morning for 10 days but when we get home we will have a follow-up ultrasound to learn more. This news saddens mommy. I know that a cleft lip can be fixed and there is little problems afterwards but I hate knowing you will be in pain with surgery, you may not be able to nurse when you are first born, and I don't want people to stare at my beautiful baby. I know God has made you perfect in everyway and He will give me strength over the next couple of weeks. I love you so much and I can't wait to hold and cuddle you in my arms. I want to smoother you in kisses and sing to you. I love you my sweet & beautiful child."

Two weeks later, after we got home from a fabulous vacation in the Bahamas with the girls, we met with our ob. I was shocked when we started to discuss the plan of care for our baby and our ob said he had to give us the option to terminate our unborn baby but we only had a couple of days before it would no longer be an option due to the gestation we were at. I think my jaw literally hit the floor. I was just amazed that someone would choose to kill their child because of something that was purely cosmetic. No other markers had come up on the ultrasound that showed any kind of chromosomal abnormality and we choose not to risk an amniocentesis because no matter what anyone told us there was no way we would not give our child a chance at life. Our doctor knew that this was not an option for us but he is mandated to inform parents of their choices. I don't think I will ever be able to forget the two times in my life I have been given the choice to end my child's life; Drew's cleft and our quadruplet pregnancy. It makes me hurt to think that I was given the option of not ever witnessing the smiles or feeling the arms of some of my children wrapped around me in the most amazing hugs that only a child can give. 

We continued our pregnancy and 10 days after our baby was due it was time to meet our son or daughter. A quick labor and after 2 pushes we had our little boy. He was quickly taken to the warmer to be checked over and I remember my son being brought over to me and after a couple minutes of being totally smitten over my newborn son I finally saw his cleft. I remember thinking how when I first saw him and held him I did not even see his cleft lip. I noticed it during the time that I was taking in each part of my little boys face as only a mother does; his amazing curly hair that already needed a trim, his big blue eyes, his perfect smile that had a cleft in the top lip. He was totally perfect and he was mine. My biggest concern from week 19 til the day he was born was whether he would be able to breastfeed or not. Everyone I spoke with from doctors to speech therapist told me we would have to wait until he was born to see how large his cleft was before we would know if he would be a successful breast feeder. I cried tears of complete joy when he was less than 10 minutes old and latched on as if he had been doing it for months.

The next couple of days were spent adjusting to life as a family of 5. The girls were so in love with their baby brother. Paul and I were amazed at how easy life with one baby was after having twins. Drew's cleft was just part of him. When he was about two weeks old I ran to Home Depot for something and when I got back into my car I got an email saying that the sneak peek for Drew's newborn photo session was ready. My internet connection was not great so it took forever to load but the first picture I saw had me sobbing in the Home Depot parking lot. I was seeing what my son would look like without his cleft lip for the first time. I accepted his cleft but I knew he would someday have it repaired and that one picture allowed me to see what he would look like after his surgery.

On October 7th Drew was scheduled to have his lip repaired and also have his circumcision. The poor boy had no clue what hit him. The night before I sat and journaled to my little man; 

"Tomorrow is the day of your surgery. I feel I have the same emotions I had the night before I was induced with you. I am nervous for the surgery because it is my baby going in for surgery but I know God will be with you and you will do great. I am nervous that you will be in pain and I won't be able to do anything for you. But I think the thing that I am most nervous for is seeing you for the first time after surgery. I have fallen deeply in love with my little boy who happens to have a cleft lip. I can't imagine now what you will look like without it. Tonight when I was giving you your bath I started crying because I can't imagine not seeing your same smile again after tomorrow. I know you will be handsome after it is fixed but I just can't picture your new smile yet! I love you Drew David and you are completely perfect by God and I wouldn't trade you not having the cleft for anything. You have already taught me an amazing lesson in your short life - God does indeed make everything perfect in His eyes. Love you Drew Bear".

The morning of his surgery he was the happiest boy in the pre-op area. He charmed over everyone who stopped by his crib. I think the hardest part of your child having surgery is handing them over to the anesthesiologist. At that moment in time you are entrusting your child to someone you have only just met. You then go sit in the waiting room and every time someone walks in from the side door you are just praying that they are going to say your name and tell you that your child's surgery is complete and you can come on back. When the door finally opened and I heard "Drew Lesnau" I couldn't stand up fast enough. In recovery he was not a happy camper. His face was swollen and crusty. His cry was not one we normally heard from him. He was as pale as the white blanket that he was wrapped in. I knew his surgeon did a great job but at that moment I just wanted my son back, cleft lip and all. I tried nursing him right away more for my comfort than his but it took about 12 hours before he was ready to eat. We ended up spending the night at the hospital for pain control but by 7am I was begging for them to discharge us. I wanted to snatch up Drew's roommate on our way out and bring him home because the so called parents of this sick little boy were sure to let everyone know how much of an inconvenience their blind, deaf son was. Oh how my heart still aches for that little boy. 

Drew came home with no-no's on which were arm splits that did not allow Drew to bring his hands to his face. He did not like these one bit but his sister's sure had fun with them. Luckily for us Drew was not a thumb or pacifier sucker which would have been discouraged following his surgery. He was kept on Tylenol with codeine and I was so happy when about day 7 he went to just plain Tylenol. We were finally getting our little boy back once he was off the narcotics. It wasn't that he was in pain during those first 7 days; he just was not the smiley, happy little boy he always was.  

His scar healed quickly. At first his lip did not line up correctly but his surgeon had told us that it would take 9-12 months for it to fully heal. A little longer than normal because he is such a little white boy! The scar also stayed red until he was about 9 months too and then slowly faded to white. Today many people who meet Drew never know he once had a cleft lip. We do always know when he is getting a cold though because one of the first signs is the top of his scar near his nose gets red. Around the time he enters Kindergarten he will need a revision and this is just due to the way the facial skin stretches as a persons face gets larger. He then may also have to have a revision in his mid-teens. 

Occasionally I wonder what he would look like without the scar that runs from his nare to his lip but 99% of the time I forget that my son was born with a split in the top of his lip. Being a boy I am totally fine if someday he wants to come up with some cool story of how he got his scar because you have to remember he is Spiderman! 


Happy Birthday Little Man

His hair was awesome. We got so use to his cleft that it took us a moment to remember why every time people saw him in his car seat or being held they would always pause before saying anything about our baby. People were so kind and his hair gave him a total out because everyone commented on that! Kids were always the one that would come right out and ask about his funny looking lip.


Even as a mom I can say that sometimes his cleft was not attractive. When looking back through his pictures this morning this one still makes me teary eyed.
This was the first picture that I was able to see what my Drew Bear would look like once his lip was repaired.

The morning of surgery.


My baby right out of surgery. I wonder if dad's ever are the ones to hold their babies after surgery? That job is 100% mine in our family and I don't think I will ever give it up.

In his room on the peds floor after getting some morphine.

Drew and his no-no's on the way home.

6 day after surgery

8 days after surgery. Still on codeine which gave him such sad eyes. The upper part of his incision got very crusty for about a week which the surgeon said was normal due to secretions from the nose.

3 weeks after surgery

6 months post surgery. Happy Easter Drew-Drew

The 1 year mark after surgery to repair his cleft.

Happy Halloween...2 years post repair
Almost 3 years to the exact day he had his repair. Oh how I love this little man!!

4 comments:

  1. What a handsome boy! He makes me laugh and smile all the time whenever I see the photos you post, he seems like he's got such a mischievous, energetic personality! And he has such a fabulous smile, I love it. So glad for all the wonderful decisions you have made for your family and strictly as a mother—you were truly called to a large family, Krista! You would never know he had surgery to repair his lip and I cannot BELIEVE how much hair he was born with either!

    ReplyDelete
  2. Beautifully written, Krista, and such a story of hope for parents who learn their developing child has a cleft lip (or any kind of "abnormality"). God doesn't make mistakes! Drew is one handsome little boy. Thanks for sharing!

    ReplyDelete
  3. hey nice post meh, I love your style of blogging here. this post reminds me of an equally interesting post that I read some time ago on Daniel Uyi's blog: First Time Conversation With An Attractive Girl .
    keep up the good work friend. I will be back to read more of your posts.

    Regards

    ReplyDelete
  4. Thank you for sharing this, Krista. Drew is perfect! It's such a scary time when you receive a diagnosis of any kind for your baby . I hope the people who need to read this post find it. Much love to you!

    ReplyDelete

Related Posts Plugin for WordPress, Blogger...