The past few days have been busy and we have not been getting much sleep. Haley had another eye surgery late last night. She was in surgery for four hours. The doctor wanted to get a better look at her eyes, but ended up doing more surgery on her left eye to try to save it because he found that her left eye (retina) was detached. The Ophthalmologist seems to think she will have less than a 5% chance of seeing out of her left eye. They are now worried about her right eye as well. They did not operate on it since there was nothing they can do. Only time will tell. They will keep close tabs on her right eye in the coming weeks. We still aren't sure how long it will be before we can transfer Haley back to Woman's. We will continue to pray for Haley's eyes and leave it in the Lords hands. We are hoping for a miracle. She was able to come out of surgery extubated and back on the nasal cannula. We were pleased about that. She will pull through this like the little champ she is. She is a very special little girl and we know that she will be strong despite not being able to see.
Our beautiful Haley
Rachel was seen today by an ENT (ear, nose and Throat) doctor. The doctor did not do the bronchoscopy, all she did was a consult. The doctor will perform the bronchoscopy on December 8th. We hope that she will not have reflux or any obstruction. We are proud of Rachel's progress otherwise. She is finally growing a little. She is up to 5lbs 7oz, which Means she gained an ounce a day last week. That is what the doctors want to see from her each week. We are so grateful for our precious little girls, they have such strong little spirits. We love them both more than words can express. We will continue to pray for their progress and development.
Feisty little Rachel with a death grip on that pacifier
amanda and thomas please never loose your faith in God. times have been so harsh and cruel to you both i just know that God will carry you through these times. you are such special people. amazing, wonderful, powerful people. along with God you will both keep haley and rachel safe, happy and showered in love during their time on earth with us. God has chosen you to protect and mind these beautiful baby girls. already you have proved that he chose so well. my heart breaks for you and for the girls at a time like this but i just know that you shall manage and things shall soon look so much brighter. lots of love and the kindest and gentlest of thoughts and strongest of prayers, love shirley....
ReplyDeleteThese babies have been through so much. I hope this is the end of their suffering and life will become more comforting for them. It is really a shame if Haley will bot have vision- that will make life so hard for her. Reflux is not a good thing either- babies with that illness endure so much pain. Go with the G-tube if it will give her some releif. My child has a mickey button, fundo and it is the best thing we did for him. He is no longer in pain. Suxh hard decisions to make. Good thing the two of you are strong. Lets hope the babies will gain some of the strength you have and survive through these set backs.
ReplyDeleteOne of my triplets has the Stage 5 ROP - she is blind after 7 surgeries - they were not able to save her retinas- although its very very sad for us - they dont know the difference. Its a challenge everyday - but you will come thru and there are great resources out there that can help. If you have any questions please email me
ReplyDeleteI'll keep on praying and crying out to God...
ReplyDeleteI am praying as well for a miracle.
ReplyDeleteThis is such a heartbreaking turn for your family. I know you have suffered so much already, it hurts to see you have to endure more struggles. I'm sure there will be hard decisions to be made about both girls in the near future, I'll be praying for you two that you have the strength and guidence you need at this time. You continue to be such wonderful examples of faith through adversity. It is sad that your girls are called to bear another burden, but they are both so strong and will get through this. They are so blessed to have each other and you two as parents! The fact that they are here and growing so strong is such a miracle, I'm sure the Lord has great things in store for them!!
ReplyDeletePraying for you always,
Christina McKinney
Our prayers are with you. You are strong and the Lord recognizes that.
ReplyDeleteAmanda and Thomas, only people with your faith and strength can endure so much. It is obvious that God would only trust these special spirits to special parents like you. You are providing Haley and Rachel with the best and doing your part beautifuly. Sometimes it is very difficult to understand His will; however, I know there are lots of blessings waiting for you. I can only imagine how you feel and I wish I was there to give you a big hug. Hang in there and stay srong. Please let me know if there is anything I can do to help you. You can count on me. I will continue to pray even more and I know miracles happen. I keep all of you in my heart. Love, Claudia
ReplyDeletei am so sorry for her vision problems, but there are lots of people who have sight that don't see.... haley will be just fine! she's here. she's loved. she is delightful..
ReplyDeleteRachel's not taking any chances on that pacifier getting away... she is so precious as is Haley...
love these babies soooo much..
Erma
They are both SO sweet! I am loving all the cute outfits! We will pray for her eyes and continued blessings for you all. Much Love, The Halls
ReplyDeleteWords can't adequately express our feelings about your brave, precious babies and about you and Thomas. We too are praying for a miracle for both of them and know that they and you will deal with the challenges with faith and courage. We have grown to love all of you and we love the darling pictures. Thanks for sharing your lives and faith. Love from Salt Lake City.
ReplyDeleteOne of the youth at my church is totally blind in one eye, but he functions at 100% - even plays the quad drums in the marching band! We'll be hoping that at least one of Haley's eyes is spared, but even if it's not we know how strong she and you are, and I'm sure she'll make her way through life fine, albeit with a lot of hard work. Same goes for Rachel - frankly, these girls kick butt! They will accomplish whatever they put their minds to!
ReplyDeleteThey are such beautiful girls. Thank you for sharing your story. Sorry to hear about Haley's eyes. Praying for a miracle.
ReplyDeleteWhether or not she is blind, you will make her life a wonderful one filled with joy and all that God has to offer. Don't stop praying - miracles can happen.
ReplyDeleteI have a son who was born with PFVS (similar to ROP but in full term babies) he had surgury at 2 and 3 weeks old and up until now he has been doing fine (he will be two in a couple months) today I noticed his pupil looked funny and we won't know what is wrong until tuesday when we travel to his eye specialtist...I am so worried about it...it is also his left eye. I just wanted to tell you that I understand how hard it can be...but don't give up she is a blessing and even if she doesn't see then HE has a reason for her to be here with you. Hugs and blessings
ReplyDeleteShannah Herzog