The girls are doing well. Haley saw her eye doctor yesterday. He said that her right eye shows no changes. She still has a lot of scar tissue in her eye. It doesn't seem to be healing. Her doctor said that she may only be able to see shadows. We still have hope and faith that she will be able to see more than just shadows. Only time will tell. Her left eye as we have previously reported is detached and she won't have any vision out of that eye. Since her left eye is detached, it doesn't open as wide as her right eye. Her doctor is recommending a prosthetic eye cover which is like a contact lens that will help her left eye look more natural like her right eye and will help her left eye to grow. Later this month we will go for a consultation for this prosthetic eye cover. Haley seems to be getting closer to getting that tube out of her nose. She is now drinking 4oz bottles (4 bottles/day) during the day, but is still not taking enough to get the tube out completely. She is also still getting viagra (sildenafil) for her pulmonary hypertension every 6 hours. Having the tube makes it much easier to give her that medication. She pulls the tube out almost daily. So when she pulls it out we give her a break from it until she absolutely needs it. At Haley's last pulmonologist appointment the doctor said that her pulmonary hypertension has gotten 50% better and is getting closer to not needing the viagra medication anymore. I look forward to when that will happen.
Daddy and Haley goofing off
Haley touching her toes
Rachel rolled over!!! Unfortunately I didn't have the video camera ready. She rolled over unexpectedly. It always seems to happen like that. There have been many photo opportunities that I have missed due to not having the camera ready. I now have the video camera near by for when she rolls again. I will post the video when I get it.
Rachel and her beautiful blue eyes
Rachel sticking out her tongue. When she gets excited she sticks out her tongue.
Last week we tried letting Rachel taste some applesauce. She seemed to enjoy licking the spoon, but didn't like it when the spoon was put into her mouth. She is going to require a lot of therapy to get her to eat. Since she was not allowed to take anything by mouth for so many months, it will take some time for her to get the hang of eating.
Rachel wanted to hold the spoon as I was giving her tastes of some applesauce. I think most of the applesauce was on her mouth than inside her mouth.
It took three years of therapy to get our daughter, who was born prematurely, to eat properly. She'll be 7 soon and she still requires her food to be cut into little bits (she has global muscular weaknesses and chewing it hard work for her) and would rather use her fingers than utensils. But she eats, her weight is FINALLY within the normal range and I just give thanks for my Blessings.
ReplyDeleteThe girls are adorable, as usual. I bet Grandma and Grandpa were so thrilled to be able to hold their precious grandchildren!
ReplyDeleteHaley's eye looks so much mroe pronounced that usual today. Maybe it's because she has her glasses off. Well, we can only hope and pray for her vision to improve so she can see this beautiful world around her! And thank goodness for the prosthesis so her eyes look the same. That will be a blessing to her later on in life when she grows up.
ReplyDeleteQuestion: Does Haley respond to interactions with your faces- like, if you make faces at her, does she respond to you?
Haley looks SO CUTE touching her toes!!!! SO CUTE! I love those babies!
Good for our lil Rachie for turning over! What a big girl she is!!! Awww! :)
Thinking of you and your babies. I'm glad to hear of them making progress with their health and development. Reading about Rachel and the applesauce reminded me of when my 23-weekers were first starting feeding and we sat them in a kiddie pool on the living room floor to contain the mess. I hope you have found other preemie parents to talk with about their experiences. I'm not sure I've mentioned it in previous comments, but I have found wonderful support through Preemies Today and Preemie-L online groups.
ReplyDeleteAmanda - you can get some really cute babies books with lots of different textures to feel, and Braille as well as printed writing so that Haley can start getting used to it.
ReplyDeleteFortunately we are blessed with the ability to fully enjoy our world even without using sight - Haley won't miss out on anything. She'll learn to read (Braille), attend school along with her sister, work using a computer and get about using a range of skills including any useful vision she has. Your gorgeous girls will be just fine - regardless of what disabilities they grow up with.
i just can't believe how these little girls are growing! they get prettier every day too! that's pretty hard cause they have always been adorable!
ReplyDeleteso glad Gma and Gpa got to come and visit. i think grandchildren are about the greatest gift i ever received! bet they do too!!
Love you!
Erma
I love seeing their sweet smiling faces. They are so cute!
ReplyDeleteThank you for explaining the issue with her left eye. It had bothered me for a while why her eye seemed to be shut all the time - that makes total sense that since it isn't being used, it pretty much just closes up. It is AMAZING what these doctors can do to cosmetically fix something like that. I do hope that she gets some vision in the other eye, but even if she doesn't, I am sure that she will excel regardless!
ReplyDeleteAmanda and Thomas, I'm happy to see how the girls are developing well. They are catching up and slowly will reach every milestone they are supposed to. Haley and Rachel are fighters and will continue to amaze all of us! Thanks for sharing!
ReplyDeleteLove,
Claudia
It's nice to see that the girls are doing so well.
ReplyDeleteJust wondering....do the babies have any teeth yet?
ReplyDeleteDaddy and Haley together is so cute and sweet!!! We pray that Miss Haley will have some eyesight and she is a fighter so who knows what miracles may still be in store :)
ReplyDeleteRachel is so darn cute and the picture of her with her tongue out makes me laugh!!!
They do look so alike and there is not doubt they are sisters. I see both of you in them!!
I know this is a late post, I was just catching up on blog entries and I rarely comment, but I'd be happy to talk to you about experiences with eye prosthetics; I'm 30 years old and have had eye problems since birth and wore a prosthetic contact lens starting at a young age. Eventually I had the eye removed due to glaucoma and got a prosthetic eye (or glass eye), but they make some incredibly realistic prosthetics these days - I'm a teacher and my students have no idea that one of my eyes isn't real unless I tell them! Feel free to contact me at deallp@gmail.com, I'd be happy to talk to you about it. Belated congratulations to the girls on their first birthday!
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