It is time…

Welp, with only 10 weeks left until I’m considered full term, I think it’s time we let you in on a little update on Baby Guard #2!

I think I’ve tried to write this hundreds of times already, and I know I rehearse it in my head over and over every day but I’m feeling a short and sweet vibe right now so here goes:

At our 12 week ultrasound we discovered that although baby is growing strong and healthy, he or she will be born with a cleft lip and palate. The other times I’ve tried to write this post, I’ve done so in a more narrative way, describing how the moment of hearing this news felt and the emotions that followed during those next days and weeks. To be honest, most of it was quite a whirlwind and it was hard to put into words, as each day, minute, second felt different. For me, being told the news that our miracle will be born with a birth defect, feelings of grief, anger, bitterness, and sadness swallowed me up and beckoned me to climb back into a pit all too familiar.

I am grateful for the pruning and refining God did with my heart through our years of grief and infertility. Isn’t it amazing to see the fruit of learning to let God dig in and uproot the ugly parts of ourselves? I have allowed myself to feel the depths of my anger and sadness over the fact that my child will be born with a funny little smile, that it will endure at a minimum three surgeries (two being in it’s first year of life), that it will wear a scar on the most looked at part of it’s body, that it could face bullying or ridicule as a child, that once again I will not be able to breastfeed my child, that once again we don’t get a “normal” story.

By God’s grace, He has not allowed me to stay in those places of bitterness long, as He has reminded me over and over and over and over again that this baby is a miracle, that He is knitting it together in my womb, that he or she is an answer to a prayer I’ve cried for many years, and that if my hands are closed to what He is going to do in and through this then I will be missing out on Him fulfilling his promise that “…in all things, God works for the good of those who love him…” Romans 8:28.

So what does all of this mean? We intentionally waited to share this news until we met with baby’s surgeon so that we could 1) have all the correct and appropriate information to answer any questions and 2) give ourselves time to process and feel comfortable with this unique situation our family finds ourselves in! Here are some quick facts about what the heck it even means for baby to have a cleft lip/palate and how our next year or so will look:

Cleft lip and cleft palate comprise the most common birth defect in the United States. One of every 600 newborns is affected by cleft lip and/or cleft palate. (Who knew?! We certainly didn’t!)

A cleft lip is a separation of the two sides of the lip. The separation often includes the bones of the upper jaw and/or upper gum. A cleft palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse, or join together, as the unborn baby was developing. Cleft lip and cleft palate can occur on one side (unilateral cleft lip and/or palate), or on both sides (bilateral cleft lip and/or palate). (Baby Guard will be born with a unilateral cleft lip with some palate involvement, though we won’t know the extent until birth).

Cleft lip and cleft palate are congenital defects, or birth defects, which occur very early in pregnancy. The majority of clefts appear to be due to a combination of genetics and environmental factors. (So here’s where Ryan and I look at each other and shrug because we do not have any family history of clefts and there is nothing I did during the pregnancy to “cause” it…this was HUGE for me to hear! Doctor calls it an “anomaly”. Sweet.)

A few specifics:

  • Baby will not be able to exclusively breastfeed (ugh, grieving that one again…). So I will put in the hard work of pumping while having a newborn and 1 year old…you can go ahead and start praying for that!
  • Baby’s “cleft team” will be the doctors at St. Joe’s, though surgeries will take place at Phoenix Children’s. We really like our surgeon already!
  • Baby will get it’s first retainer at about 2-3 weeks old! Ha! It will work to mold the mouth and begin to pull the lip and palate together even before surgery. It will also help shape the left nostril which will most likely have some flattening due to the pull of the lip tissue.
  • Baby’s lip will be repaired at 3-4 months and is an outpatient procedure
  • Baby’s palate will be repaired around 8 months and will most likely be just one night in the hospital
  • Baby will then need one more surgery around 7-8 years of age for a bone graft in it’s upper jaw between it’s baby teeth falling out and adult teeth coming in (another outpatient procedure)
  • Baby will possibly need a surgery around 3-4 years of age to lengthen palate depending on how speech is going
  • A few areas cleft palate can affect are feeding issues (baby will use special bottles to eat), ear infections, and speech development issues. Not to mention, some possible dental/orthodontic needs later on.

Ok, so I hope I’ve kept this sweet because I know I didn’t keep it short! All in all, the past 15 weeks have had their good days and bad days. Thankfully, the good outweighs the bad and we’ve been able to talk to some folks in our community who have gone through this and have affirmed that what we’re feeling is normal, but encouraged us that the joy that’s to come when we meet our baby will far surpass any fears we may have right now. This little one is not a cleft with a baby, it’s a baby with a cleft and it will still have tiny little fingers and toes, chubby little thighs, a soft little belly, and good grief is this child going to have the brightest blue eyes! It’s still perfectly precious and a complete gift from a Father who doesn’t make mistakes πŸ™‚

And now, I finally get to share my most favorite ultrasound picture of them all!!

This is back from 17 weeks but I just fall in love all over again when I look at it. Gah, that’s our baby!!

P.S. If you want to read further about cleft lip/palate or have any questions I didn’t answer here check out these reputable websites:

http://cleftline.org/
http://www.cleftadvocate.org/

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13 responses to “It is time…

  1. Love this post. This baby is going to be so lucky to have parents like you. All will be just as God planned.

  2. Cynthia Snyder

    Congrats to you both. My girlfriends son was born with a Cleft lip. It was hard in the beginning but he is now 9 and doing amazing. I know your faith is strong and God will be by your side every step of the way. This baby is one lucky little one…..

  3. Lindsay I don’t know where to start so I guess I will start with; I pray for you everyday. You are one of the most honest , genuine people I know. I so cherish all the times we had together and I know I have stumbled and fallen a lot of times but my faith would not but what it is today had you not been apart of my journey. I will continue to pray for you and your family and that sweet little gift. God makes no mistakes we are all created in his perfect image. He truly has big plans for you and your family.

  4. Lindsay, what a true gift from God….my husband was born with a cleft palate 58 years ago and you really can’t tell. My husband is so handsome to me and I love him very much, because he was a special gift to his parents from God. We will be celebrating our 38th Annivsay this year.
    “Little Guard” is perfect in God’s eye he has two loving parents that will teach him/her the true meaning of beauty…..love you girlfriend, Debbie

  5. Kaleen Godfrey

    So… I cry with you. Why? Because I know the heartache of being a parent. The timing of screaming, “why has this happened to my baby?” has been different for me, but I have screamed it! The guilt of trying to figure out whose genes are responsible, or who did what to conrtibute to my babys’ challenges… has still never been answered. Sleepless night praying for a miracle, crying myself to sleep. Anger! Why can’t my child be like the other kids? Why does my child have to suffer this? Why can’t I fix this for them? Why couldn’t it have been me? I’ve been there. And the truth, I don’t know any parent who hasn’t. Please hear from my heart that I am in no way minimizing your grief. I just hope you can feel the supportive tears of every parent who has ever had a child. It is truly the most joyful, heart-wrenching, beautiful, ugly and exposing process this life has to offer! You are not alone. Though our children’s defects look different… well, wrapping them in OUR arms of GOD’s love will tell them the most about who they really are! Praying for you and Ryan!

  6. You had stated babies are unable to breast feed my mom is a lactation consultant and I personally know she has had moms with children born with cleft lips/ pallets that’s jaw been scusseful at brestfeeding after there first surgery!

  7. Wow! Our God is good and faithful! I will tell you both that when I saw our daughter’s pictures for the first time I fell in love with her. Her pictures were taken at 3 and 4 months old and her bilateral cleft lip had yet to be repaired! I am so certain that when you see your precious baby for the 1st time, you too will fall in love! You will see way past the cut in the lip and grow to love your baby more and more each day! Myah’s lip was repaired before we went to China to adopt her and now, 7 months after repair, it is not noticeable unless you are really close to her. She is such a precious gift and we praise the Lord for the opportunities that God has opened for us to share with people because of her cl/cp!

    We are praying for you both!

  8. Lindsay, you are so courageous to share your story as you have. You have an abundance of knowledge and you have prepared yourselves quite well. I am a Speech Pathologist at Nationwide Children’s Hospital and I frequently see children with clefts, because I work with children who have hearing loss. I can send you some more information if you are interested in info. regarding speech development. I also have good speech contacts from individuals who specialize in cleft lip/palate. Or, you can contact me when you are ready for that info. πŸ™‚ The initial stages will be, like you mentioned, about feeding. You will get through this with Gods support and guidance, just look to him as you do for the answers and strength. Please let me know if there’s anything I can do to help.

    Best to you all,
    Shana Lucius.

  9. WOW !!! That is an amazing story . You both are such awesome parents and new baby Guard will be amazingly blessed to be in your family ….. We will keep you all in our prayers and thoughts. Thank you for sharing your story .

  10. Lily Alexander

    Lindsay-hey Lil mami!!! Its gunna be okay!! I know the strength and faith you have….we can all see the research you put into this…girl! You are such a great mom!!! I think you have such a great heart and you are sooooo humble in every way!! I love you soooo much!! Thanks for sharing your story with us and that beautiful picture of hour precious baby in your womb!!!! I’m sooo grateful to know you and I cannot wait to hold that precious Lil baby when its time to!!!!! Hang in there and just know we will ALL love to meet your baby!! We are all waiting so anxiously!!!! Love you girl !! I will keep prayin for you guys!!! ~~~~~ lily

  11. Lily Alexander

    Oh mannnn!!!! Of your precious Lil one!!

  12. Linds! I’m sorry to hear about the roller coaster of this news, but I’m so glad to know how much you still praise God for everything he blessed you with including a beautiful child. He is good!

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