Yesterday Payton was pretty mellow. She was awake all morning until 2 when ENT (ear/nose/throat) came to look at her nasal passages, and she was given a little more sedation. We took a picture of her awake cause she just looked so cute :). We forgot the camera cord, however, and will post the picture tommorrow. Her right nasal passage is pretty much completely blocked, and right now she is getting a CT scan (x-ray) to look at her a little more to see if they can find anything. Tomorrow morning she is scheduled to go down to the OR and have ENT look at her again with her breathing tube out. Also, while she is sedated, plastics is going to remove some of the dead skin from her neck and put a dressing on it. The doctor today said that it's looking like she will need a skin graft. We have been and still are praying that the Lord would just heal that area completely. We ask that you'd pray for that as well. It's just been hard to have such a nasty peripheral issue on top of heart surgery.
We have some sweet moments with her in the day when we're able to just sit next to her bed and talk to her and enjoy her. Then there's moments when it's just hard to walk into the hospital for another day or hear things like they might need to do a skin graft. But one thing we do know is that the Lord gave us a sweet, sweet baby.
Thank you so much for your prayers. Please keep praying for her neck to heal completely and for the doctors to have greater insight as to why she struggles getting off her breathing tube (whether time and more growth is needed or it's something else). We are grateful that her heart and lungs continue to look good and praise God for that. We'll continue to let you know what we find out in the next couple of days.
Much love, the Joneses
7 comments:
Yeah I'm the first post today! I was so glad to hear you've been enjoying Payton - I can't imagine how hard this whole ordeal has been for you both. I pray that you will remain strong, that Payton's neck would heal completely and that you all will be able to come home soon! We miss you!
Love,
Karen Johnston
Hey guys: Don't know if you know who we are. I think you might know/remember our daughter Leah. We want you to know how much we are praying for both of you and especially your baby. What a testimony all three of you are to the sufficiency of God's grace. Love and prayers always...Ron and Cher Hoekstra.
Hey guys,
It is fun to see her with her eyes open. Arron, tonight is the first softball game it will be a bummer not to have you there. We all can't wait to have you back and to be able to see your little girl. Have a great night. We are all still praying for a full and fast recovery....Riley too.
Hi-
We've been praying for you all. What fun to see the pictures of your little girl. Praying for strength for you all and healing for Payton. And praying for God's grace to overflow in these difficult days.
Love,
Jenny Friday
Heather - Know that Evelyn, Lari & I have not ceased to pray for Payton and are standing with you believing for her total and complete healing. LK 8:50 "Fear not, only believe - and your daughter shall be made whole." God Bless! John & Lari
Aaron & Heather,
I just found out about your little angel being born and the problems she's having. The Friday's will be praying! One of my favorite psalms to remind me of God's special watchcare for those in need is Psalm 113. And remember that he loves Payton more than you'll ever know!
Love,
Mark Friday from Illinois
Heather and Aaron,
My name is Mir and I am friends with Kevin and Alli Shorter, who used to be on staff with Crusade (we all went to college together at NC State). Alli sent me a link to your site yesterday and I just wanted to encourage you by telling you my story (briefly). My son, Merrit (now almost three) was born with Pierre Robin Sequence and a cleft palate. His story is here: http://www.mirhaynes.com/page/july1.
Two things come to mind that I wanted to encourage you with.
First, Heather, keep breastpumping! You are giving Payton one of the best advantages she could possibly have. I pumped for 13 months for Merrit, who got my milk through his gastric-tube. I know how it feels to not be able to hold your baby (Merrit spent a month in the NICU and we didn't hold him til Day 7 b/c he was on a ventilator and then, on Day 4, was given a trach which he had til he was 15 months old). Knowing that you can give her something that NO ONE else can give her (your breastmilk) is a wonderful way to care for her at those times when you feel helpless and you can't even pick her up. Two things my lactation consultant recommended: rub a little milk on her lips and/or put a little milk on a 4x4 gauze square and put it beside her head; she knows your smell and those things will help her feel close to you and more secure.
I wrote an article about extended breastpumping and the unique challenges of feeding a child with special needs. I'd love to email a copy of it to you if you're interested. Email me anytime at mir.haynes@gmail.com.
Secondly, I wanted to say how wonderful it is to have such a great group of people standing beside you in prayer for your family and for Payton's progress. We were also incredibly blessed by friends, family, and even strangers who rallied with us to pray for Merrit. I know it is both humbling and encouraging to be so loved.
Payton is a gorgeous little girl. What a pretty little mouth she has! And I love the picture of her with the red bow in her hair. One last word of encouragement...I have met lots of parents of kids who had "rough starts" (my best friend's daughter also had open heart surgery; if you want to talk with her, let me know) and the one thing I have heard over and over is that all the poking and prodding and all the caretakers changes our kids' personalities--it makes them incredibly patient, outgoing, and tough. If there's a "bright side," maybe that's it.
You have a beautiful little girl, there. Enjoy every minute and know that you are standing strong in the face of one of the biggest challenges you may ever face. I am moved by your story and am standing with you in prayer.
Best to you!
Mir
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