Cleft Palate Update

Well this is it. We had our HUGE doctor's appointment with Raegan's team last Wednesday.

Our appointment was at 8am in downtown Dallas. Our house is about 45 minutes away, but with morning traffic, it takes double that time. So we left our house at 6:30am which was tough on Raegan because she normally sleeps until 8-8:30am. She fell asleep right as we pulled into the hospital. Great.

The point of this appointment was to allow every part of her team to meet with us. This appointment last hours. HOURS! 

Raegan was a champ, for most of it. She was crawling all over the room and wanting to be into EVERYTHING! It was tough listening to the doctors when she was crawling all over me. But we made it through.


After all our appointments our ENT sent us to Audiology for a hearing test. During our meeting with the ENT she said she had fluid on her ears which is to be expected with a cleft palate baby since their ear canals are smaller and she's had a cold for about a week. 

So off to audiology we went. She checked Raegan's ears again and confirmed fluid on her ears. Then she did a hearing test. She had Raegan sit in my lap in a booth. There was a clear glass looking out where the audiologist sat. There were a set of speakers on either side of us and she would talk to Raegan through those. Raegan responded each time to her voice, but when she started doing just sounds, Raegan stopped turning to look at the speaker. My heart just sank. I had noticed recently that I was having to say Raegan's name multiple times before she would turn to me, but I didn't think anything of it.

After the test she said Raegan showed signs of mild hearing loss. This is to be expected of cleft palate babies which is why they suggest doing tubes in their ears during their repair surgery, which we are doing. She didn't seem too worried since Raegan passed her newborn hearing test and had a cold at the time of the test. She said we would retest 8 weeks after her surgery. I am praying the results come back perfect. I don't want anything else to get in the way of her developing normally.

Her surgery has been scheduled for April 30 and we will be spending at least 1 night in the hospital, maybe more. With Raegan's diagnosis of Pierre Robin, she is at a higher risk of complications after surgery. Her airway is small and since they are closing the cleft, it will make her airway smaller. There will also be swelling after surgery which may cause her to struggle with breathing. So her cranio-facial surgeon (who is doing the cleft repair) wanted us to be prepared for her to be in the ICU and to also possibly stay a few days compared to 1 day like other cleft repair patients.

I will try my best to do a quick post after her surgery to update everyone on her progress. Prayers that the surgery would go perfectly, there would be no complications, and that her recovery is quick.

For years I prayed for this child. For years I begged God to give Kyle and I a baby. And now we have her. No matter the struggles we have had or will continue to have, I wouldn't trade her for anything. God gave us her because He knew we could be strong. But we are only strong because of Him. He has given us the strength to push through when we felt weak. Only through His amazing guidance and grace have we gotten where we are today. I was meant to be this little one's mama bear and I wouldn't have it any other way.

17 comments

  1. What a little sweetie! I'll be saying prayers that the repair goes smoothly!

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  2. What a little sweetie! I'll be saying prayers that the repair goes smoothly!

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  3. Gosh... your baby girl is a champ. And so are her mommy and daddy. I look forward to hearing an update about her surgery. I will also say a prayer for her on surgery day! She is just the sweetest and cutest (I love all the pictures with her tongue sticking out)!!!!

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    1. Oh! And I bought Kensie that same floral romper.... I think we have great taste personally :) Sister from another mister!

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  4. I will definitely being saying prayers for all of you!! I can't imagine how hard this must be. That sounds like a long day of appointments. She is so very cute!

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  5. Oh she's so sweet!! Thanks for the update. Will be praying for a successful surgery, smooth recovery, for her team of doctors and for you guys. My daughter had surgery back in December and it was tough to watch her go through everything. You're right that God gave Raegan to you because he knew you'd be strong enough to take great care of her. Thinking of you!!

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  6. Your strength, and hers too, through all of this is amazing. I will definitely be keeping your family in my prayers! It sounds like you have a great team to work with.

    Our Little Miracles

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  7. We're praying for peace, comfort, health, wise and skilled doctors, and the best case scenario possible! Love from KY!

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  8. Glad they are on top of it all!! She is such a cutie, but I totally hear ya on being distracted during appts with them now! Busy little bunnies!! Best wishes for the surgery!!

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  9. Praying for ur sweet baby girl! She's going to be ok and u are such a strong mama for all this.

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  10. Praying so many prayers that all will go well!! XO

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  11. awww - what a sweetie!! Prayers! And big hugs to you!

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  12. Gosh you guys are awesome! Praying for yall!

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  13. She will knock that Surgery out mama! Let us know if y'all need anything. I believe you said she was in NICU after birth.(familiar with a ped icu then) May be wrong Ashley. Y'all have had your trials& y'all will conquer this bend in road as well. I am sure of it. Faith&Love. Prayers when day comes this month <3 SaraLee

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  14. Praying all goes smoothly and a one night stay is all she'll need.

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  15. Sending prayers, strength, and love to you all. She is such a beautiful girl. I hope that all goes well with the surgery and that her next hearing test comes back with good news. Let me know if you ever need anyone to talk to! I don't have experience in this, but I will listen to whatever you have to say!

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    1. Thank you Krystal! I am confident in God's provision and I know she's going to do great!!! :)

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