Sunday, December 13, 2009

Continual progress

The weekend has come and gone just like that. Our beautiful little girls continue to progress. They are both steadily growing and seem to be getting stronger each day. We are so grateful for their beautiful little spirits. The joy that Thomas and I get each time we are with them is beyond description. We feel truly blessed to have both our girls here with us. We know they have been through so much, but we also hope they won't even remember it at all one day.

Rachel is doing reasonably well this weekend. She had her hearing screen yesterday. She passed in the right ear, but the left ear they couldn't get an accurate reading due to the noise from the cpap. They will check again later on both ears. Rachel is still on the dreaded cpap. They changed the cpap prongs she has been on. She changed from Argyle to Hudson prongs. Basically the Hudson prongs are bigger and a little longer. They fit in Rachel's nose better and don't move around as much. She really was having a hard time on the Argyle prongs. She seems to like the Hudson ones better. Rachel is weighing in at 6lbs 3oz. We hope she continues to grow because with her continued growth, some of her issues such as reflux and the floppy air way will get better. With time she will out grow those problems. Rachel just never quits. She will fight tooth and nail for what she wants. We love and cherish her so much. She is so darn cute.

Rachel with the Hudson CPAP prongs

Our Haley is such a calm baby and loves to sleep. She is not all that fussy unless her diaper is wet. Haley will be having a big week this week. She is scheduled for this Thursday to have her bowel reconnected. As Dr. Bloss does the surgery on her bowel, the opthomologist will also look at her eyes again for a follow up while she is under anesthesia. Haley continues to grow. She weighs 6 pounds 6oz. Haley is a little fighter. She seems to come through all these surgeries really well. Haley is such a beautiful little girl as well. We love and admire her very much. She just seems to plow forward and to over come all that stands in her way. Despite the challenges she will have with her vision, we know that will not stop her from being happy and living a good life. She and Rachel will always be loved and will always know they are loved by their mom and dad and their savior Jesus Christ.



  1. Praying for a great week for you all. The girls are BEAUTIFUL!

  2. the girls are just looking so cute!!! that photo of haley is just stunning !!
    lots of love to you all.........

  3. Someone in an earlier post asked why we screen infants hearing. All babies are or should be screened for hearing before the age of 3 months. Why? Because we know that 1 to 2 infants per 1000 are born with some type of hearing loss. In the NICU we also know that certain drugs often given to babies can cause hearing loss---Gentamicin immediately comes to mind. That is why if we have a baby that has recently been on Gent. or any other drug known to cause hearing loss, we wait to screen until after that treatment is complete.
    Hearing loss if undetected will impede speech,language and cognitive development. Early detection of hearing loss is of great benefit because language development begins before the infant starts talking. There are many genetic and nongenetic causes of hearing loss in infants, the more information we have,the better. We screen as a baseline so that if a problem is detected more extensive tests can be done and if there IS a real problem early intervention can take place.
    Often times a baby will fail the hearing screen on one day and pass on another. Why??? A lot of times if the baby is really fussy, moves around a lot, too much noise in the enviornment, equipment issues, the baby will fail. When conditions are better they pass. If the screening was good and you get a refer or fail it simply means followup is needed for the reasons i listed above.
    Hope that helps.

  4. I hope little Haley's surgery goes well this week! They are both little fighters and after all they've been through, I'm sure they can handle any trials that lay before them. I can't believe how much weight they've gained! Yet they're still so small!! My daughter was 6lb, 10oz and I remember thinking *that* was tiny!!
    I hope that you both are able to have the strength you need to endure this week. Your girls are so beautiful and getting closer and closer each day to being home with you!!

    Praying for you always,

    Christina McKinney

  5. You have such a wonderful attitude. You are correct in knowing that Haley will have a full and happy life despite the challenges she *may* endure due to her vision. My daughter is doing great and has been getting vision services from a teacher of the blind and visually impaired since she was a baby. She has a lot of strengths with regard to her vision, but a little girl in her class also has a mobility and training specialist to help her navigate the environment. And they are only 4! I only mention this because there are a TON of services available to her should she need them!! My thoughts and prayers are always with you and your girls. They are miracles and God can continue to heal them fully!!!

  6. daughter failed multiple hearing tests and not until she had a sedated test did we find out her hearing was and is fine!!

  7. Amanda and Thomas, I love the way you face challenges. I admire your attitude and I'm sure you will continue to be blessed. The girls are beautiful and very close to going home. I continue to pray for you, but will pray even harder for Haley on Thursday. All will be fine. Love and prayers, Claudia

  8. YOU are so remarkable! your sweetness radiates in every word.. thank you.
    i just love those little chubby cheeks. you can see how they have grown!
    love and greatest good wishes for Haley and Rachel in the coming weeks.
    Love you little ones! big ones too!

  9. Our Maya HATED the CPAP too. Just hated it. She wasnt a fan of the cannula either. She didnt like anything on her face or nose; I often think it is one reason she doesnt love pacifiers. It's just something else on her little face.

    We are praying for your babies. And for you.

  10. Kaylee one of our twins HATED all tubes, anything on her face and for a long time could not even be with her sister because she tried to take all of her stuff out as well!! Now she is a very, very busy 18 month old. That will be you before you know it :)

    I love Rachel's hat it is so sweet!! Haley looks so peaceful and we will continue to pray for both of their health and strength and continued development!!!

  11. Praying for a successful surgery and easy recooperation for Haley and for Rachel to do better with the new prongs which should help her to be less fussy and therefore hopefully grow quicker.

    p.s. Love the pic of Haley with her double-chin and chunckie cheeks! : )


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