As promised, I wanted to post some precious pictures of Ryleigh that have been taken recently. I wish all of you could see her in person, these pictures make her look much bigger than what she really is! As I was standing over her incubator today, I wanted her to feel my presence so badly. Sometimes I feel so defeated because I want her to know I am there, and I honestly don't know that she does. There have been many days that I don't even get to touch her, just because her blood gases don't look good. (These change hour by hour, and day by day.) I realized, God probably often feels the way I felt today. He is with us all the time, and sometimes we don't acknowledge or know that he is there. His loves pours down on us wether we acknowledge him or not. The love I have for Ryleigh is so overwhelming, and I know there is no way she could grasp or understand that.
Before we get to the pictures, I wanted to update you on what we found out today. The good news is, they were able to get the PICC line in! Praise God! However, we did have to go back on the high frequency ventilator. She is doing really well on it though. I am hoping that means we can get off of it soon! The PDA is smaller from the medicine, but it's still a moderate size. So, the doctors are just going to monitor it and see if the rest of it will close on it's own. Otherwise, she will eventually have to have surgery. I may get to hold her in a couple of days, and I am really longing for that moment! Continue to pray that Ryleigh grows stronger every day, and that her feedings continue to get bigger. Pray for her PDA to close on it's own so we don't have to have surgery! While your at it, pray for Aubrey as she adjusts to all these changes! Thanks friends!-Kam
Ryleigh loves to cover her face with her hands
Ryleigh in her cool shades
I love how peaceful she looks here
Today as they were putting in the PICC line, her oxygen tube got disconnected! A little scary! They said she handled it like a champ, and still was breathing pretty well without the support. They had to pump the oxygen manually with a mask on her face. Her sweet nurse Carrie (my favorite) told me I could get a quick picture without all the wires. I had to take it really fast, so she could get back to helping her breathe.
You can't really tell here,but this was when we first got to see her eyes opening!
16 comments:
This NICU is a scary rollercoaster ride for anyone! Prayers go to you and your family as you ride this ride. May God gide the hands of the doctors and nurses as they help care for sweet Ryleigh!
Kamara, I loved the pictures of sweet Ryleigh! Thank you for the updates & specific prayer requests. God bless all of you on this journey.
Amy Stewardson
Kamara, Ryleigh is precious! I love reading her updates and seeing her pictures. Thank you for the specific requests so I know just what to pray for. Just as you wrote before, I know Ryleigh is bringing more people to God, more often ~ I find myself praying for her and your entire family every chance I get! What a remarkable baby girl! I agree with you ~ being a parent really makes it clear to us just how God sees us as His children and we begin to comprehend how strong His love is for us.
Erin Gerdes
Kam-The pictures are wonderful. So glad the PICC line went well. Continuing to pray, as always, for Ryleigh. We will add Aubrey to the list, as well. Loving on your family.
Kamara, Ryleigh is absolutely beautiful. Her tiny little features are perfect and though she is little, she has quite the fight in her it sounds like! The pictures of her are precious--her hands up by her face, so sweet! So glad that the line went in and we'll keep praying for no surgery. I hate that you guys are having to go through this. I'm praying for your strength as you take things day to day, and sometimes hour by hour I'm sure. You are a great mom to your girls. She knows you are there, no doubt about it. I love you so very much. Praying for sweet Ryleigh and for Aubrey and Rod as well--I know these are long days for all of you. May God give you extra doses of strength today. I hope you get to hold her soon! Can't wait for those pictures!
You just keep hanging in there. I will be praying for Ryleigh to stay stable so that you can hold her soon! Love Carrie! She was one of our favorites too. She was always so encouraging and calmed my nerves. For some reason she was always able to make me feel like everything was going to be ok. Probably helps that she has walked this road :) Praying for Aubrey too.
So precious, Kam
She is so precious! We are still praying. Thanks for the update, Kam!
This is so wonderful. Your story of her grasping your finger is so precious. I have told everyone I know about you guys, and have asked everyone to pray, and they ARE. God's people are faithfully lifting up your family, and sweet Ryleigh. Think of what a testimony she will be! Psalm 31:24 Be strong and take heart, all you who hope in the Lord.
So good to hear from you, my heart broke as I read your previous post. Great to see sweet pictures of little Ryleigh. And thank you for sharing what the Lord is showing you in His love for us. That's awesome. You and your family are in my prayers and I think of you often. Thanks for keeping us updated.
Kamara, thank you so much for the updates. I know your time is spread very thin so it means so much that you have taken the time to keep us updated and I love the specific prayer requests.
Every time I read your posts I have tears in my eyes and a big lump in my throat. I know it is so hard, I'm so sorry. You are doing an amazing job taking care of Ryleigh, Rod and Aubrey, they are so blessed to have you! You are constantly on my heart and I'm praying for you many times a day.
The pictures were just beautiful! Ryleigh is so precious. I can't wait to meet her someday and tell her all about her funny mommy and all the practical jokes she likes to play. :) You know I've got quite an arsenal on you Kam! I love you so much and know that I'm praying for all of you. Hang in there!
Kamara-
I've been away from the computer, so it has been awhile since I commented. But NOT since I've prayed!! I've been the one who has had many praying for me and my daughter, and I am FOREVER changed by it. So, in these situations where I feel so much empathy for you and also so helpless in what to do.... I pray. Both the girls have prayed for Ryleigh too. It is POWER, and I hope you feel the peace and comfort that only He can give.
She is PRECIOUS. Such a remarkable little tiny thing. :) And I can tell that girl has some SPUNK!! She is such a fighter!
Praying for all four of you during this NICU rollercoaster ride and beyond... thank you for blessing us in sharing your journey. May God continue to be glorified through this little miracle!!!
I know I don't know you, but I found your blog through Ashley Nelson. I have been overwhelmed with your story and check your blog frequently so as to know how to pray. I am praying for your entire family and especially little Ryleigh. I am praying for God to continue to knit her together just as carefully as he does inside a womb. She sounds like quite the little fighter! I am in the middle of a high risk pregnancy and am 26 weeks - and have felt a connection to your story. Every time I pray for my little girl, I say a prayer for Ryleigh too. Keep fighting little Ryleigh!!
Bethany Good
Thanks for sharing what God is teaching! Beautiful baby girl!
J. OQuinn
These pictures are so sweet. She melts my heart. We love your family and are thinking of you and praying all the time.
Ryleigh is so brave and courageous and you are exactly right that she has found favor with our Lord! I am so glad the PIC line is in-what a blessing! Amen for the PDA shrinking, too. This is all so familiar to Garrett's story...his PDA closed "enough" to avoid surgery and he too had "lung disease"! Hang in there-it is part of the double edge sword of the ventilator-eventually, she will breathe strong on her own and her little lungs will outgrow that lung tissue!
We are praying so much for Ryleigh and also for you and Rod and Aubrey!!!
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