Thursday, January 7, 2010

Latest happenings

The girls are doing well. Haley had her follow up eye exam on Wednesday and the news was good. The doctor said that he was optimistic that Haley will have some vision in her right eye. To help her have some vision, she will need to wear glasses designed for infants. We were given a prescription for infant glasses and I ordered them today. They will be ready in 2 weeks. I have never seen glasses so small! I chose some cute pink ones. She will look cute with them on. Haley continues to do well in level 2. She is still getting the bottle 2 times a day. She still isn't taking a lot of formula per bottle (4-10cc at one time). It's going to take her awhile to get to the point of her taking all her formula needs from a bottle. She will go home on a nasogastric tube while she continues to learn to take a bottle. Thomas and I are going to have to learn how to place the tube should it come out. I'm nervous about it, but will do whatever it takes to get her home. It may be another 2 weeks before Haley comes home.

Haley loving that pacifier.



Rachel is doing well. Rachel is still on the nasal cannula and the doctor feels she is doing well on it. She is on 3/4 liter of oxygen which is a lot and she won't be able to go home on that much. Her airway needs to continue to get stronger and her oxygen needs need to be lower before she will be able to come home. We don't know how long that will take. Rachel had to repeat a test to check her reflux. We are waiting on the GI doctor to give us the results. Most likely the GI doctor will place a g-tube in Rachel in order to get the feeding tube out of her nose and make feedings easier and better for her. Rachel won't be able to take anything by mouth yet since she is at high risk for aspiration. She continues to suck on her pacifier really well. We are so grateful for that. With her sucking on that it will keep her oral motor skills going.

Rachel has discovered her hands and fingers. She has been putting them in her mouth.



This is what has been going on with the girls lately. They are so beautiful! We love them so very much and are so grateful to have them in our lives. Yes it is hard to not have them at home and to see them go through so much in their young lives, but they are truly miracles who are suppose to be here to enrich our lives. Rachel and Haley are teaching us. They are teaching us love, faith, trust, hope and to never stop believing. Never stop believing in miracles and in our Savior Jesus Christ. These challenging times will end even though it doesn't seem like it at times, but Rachel and Haley will be home one day and they will fill our home and our lives with so much joy, happiness and laughter.

22 comments:

  1. They are so so cute. Thank you for sharing them. What a blessing.

    ReplyDelete
  2. What great things are happening. I've seen those lil infant glasses before and they are so tiny and cute. Miss Haley will be one stylish baby!

    I love when the kiddos find their fingers. Love the pic of Rachel with her finger almost there in her mouth.

    ReplyDelete
  3. Yeah for you and the girls! Always happy to hear of the strides they are making!

    ReplyDelete
  4. 2 weeks!! I hope she's able to keep to that goal and that yall have her home soon. They are so adorable :) That's great news about her eyes. Don't be nervous about learning!! You guys have been such great parents thus far, I'm sure you'll get the hang of it in no time :) I hope Rachel's test goes well!!


    Praying for you always,

    Christina McKinney

    ReplyDelete
  5. I am so happy that Haley is so close to coming home! Two weeks will fly by!

    ReplyDelete
  6. Ive been following your blog for a while but have never posted. Just wanted to stay that my daugther had a g-tube placed when she was almost 4 months old and while it seemed scary at first, it really wasn't that bad. She just turned 4 and is doing wonderful. Still have the g-tube and one blessing with it you'll find is giving any meds - makes it so easy esp if they are asleep. I pray that your girls continue to progress as well as they are.

    ReplyDelete
  7. They are looking so big and cute! I'm glad to hear they are doing so well. I can't wait to see pics of the teeny glasses :)
    I hope the GI doc has good news when you meet. Have a good day!

    ReplyDelete
  8. Haley will look so cute wearing glasses! My daughter Rachel did too, and it was funny to see her in diapers, pacifier and glasses (now she wears contacts). She adapted very well and I'm sure Haley will too. I'm very happy that she will be able to see.

    Rachel is getting stronger every day. Soon her oxygen needs will decrease. If the solution for her feeding is the g-tube, I hope they place it in as soon as possible so she can go home.

    I continue to send love and prayers your way.

    ReplyDelete
  9. Wow - after 5 months 2 weeks seems very short. Hope this dream comes true and that Rachel won't be far behind. I can't wait to see Haley in her styling pink glasses. What sweethearts you have and what wonderful parents they have! May our Heavenly Father continue to bless all of you. Love from Salt Lake City!

    ReplyDelete
  10. I just want you to know what an amazing couple I think you are. I am so thankful for you blog. I was able to bring my little girl home from the NICU a few weeks ago after a much shorter stay, but I was able to find strenght in your blog and in your attitudes and testimony of the Gospel to help me get through what we went through. Thank you so much!!!!

    ReplyDelete
  11. its always so great to hear how the babies are doing! you have truly been blessed - and so have they.
    Keep up the great work. we love you!

    Erma

    ReplyDelete
  12. Thanks for the update! The website http://babieswithglasses.com/ has some good info and pictures of itty bitties in glasses. Might be helpful - definitely cute!

    ReplyDelete
  13. I'm so glad to hear the good news on both girls. It is nice that Haley will be able to come home even if she isn't taking all her feeds. I've heard that placing the n-tube isn't that hard.

    ReplyDelete
  14. Think about it Amanda, why are these babies having to go through so much in their young lives? Are you still glad you didn't go with selective reduction?

    ReplyDelete
  15. Wow hunterofserenity, no wonder you're having to hunt for serenity. Bitter much? Meanness much? I'd say yep. And until you lose your anger, judgmental behavior, bitterness and it's accompanying meanness, you will continue to have to hunt for serenity. That gift is only found in those whom have love for and compassion on their fellow beings.

    Amanda and Thomas, I just found your blog and I'm glad you shared your lives with us. Do not let people like hunter hurt you. Their meanness can be contagious if you let it. We each have to walk the path we feel impressed to walk. No one can reliably make our decisions for us, though plenty of people will second guess us or try to make them for us. Just keep hanging in there.

    I had 3 NICU babies to show for 9 pregnancies. No problems getting pregnant, just in carrying the baby. NICU is a tough place to be both for baby and parents. There was times I felt more like the family milk cow than I did the mom, but this too passes. All your babies have what they needed most - a mortal body. The rest is just icing on the cake, so to speak. Like any of us, they will have their trials. Some of us have our trials early in life, some later and some of us throughout our lives. The point isn't that we have trials, but how well we endure them. And you seem to be enduring it well. Keep up the good work. Oh, and it took us a couple of WEEKS with the baby home to actually feel like the "parents". lol Just so you know.

    ReplyDelete
  16. This comment has been removed by the author.

    ReplyDelete
  17. Amanda, I wish I could delete some people before you get to read something sooo ridiculous! There is no need for you and Thomas to put up with this.

    Shame on you, hunteroforserenity! The measure of a life after all, is not its duration but its donation and how it impacts others. The little angels received a mortal body, came here, and impacted several lives in a very positive way.

    ReplyDelete
  18. Darlene you are wonderful and Claudia i agree with you! Keep up your good thoughts Thomas and Amanda! lovies to you and the girls!
    Erma

    ReplyDelete
  19. I'm so glad to hear that at least Haley is getting closer to coming home. Both of my girls came home on ng tubes. Placing them is not that hard, especially when they are small. As they get older, it seems to bother them more. Just be sure to check for placement every time.

    Going home is very exciting, but your journey is just beginning. Be willing to accept help when offered. Your life will also be easier if you let a few other people learn to work the feeding pumps and learn to try to bottle feed the girls. Trying to do it all yourselves will be exhausting. When Rachel comes home with oxygen and a g-tube it will be even tougher. Two special needs infants is a challenge.

    I don't say this to discourage you; but in the elation of homecoming, be practical in preparing yourselves, your home, and the people around for the realities of premature infants. Have grandparents and others take the CPR course with you. Type of a list of rules for visitors: no sick people, no people who have been around sick people, etc., wash hands, etc. Get prepared for the volume of medicines: those rolling carts that are about 4 feet tall with multiple size drawers are great for sorting medicine droppers, those little tiny feeding bottles, and all the other stuff. Another one for the nursery room is good for ng tubes and all the rest.

    It's a lot of work, but it's entirely worth it. Can't wait to hear when they are home.

    ReplyDelete
  20. They are gorgeous! I am so glad to hear they are improving every single day.

    Many prayers... Always and every day.

    ReplyDelete
  21. The are so sweet and I love how much they enjoy their pacifiers!! Their progress seems to be getting better and better!!!

    ReplyDelete
  22. One more thing I love the cute little glasses they have it is hard to believe that they make them so small and so cute!!!

    Also ignore people with rude and inappropriate comments. The Lord knows exactly what he is doing and every spirit is precious and here for a reason.

    ReplyDelete

Thank you for the comments! We love to hear from you! If you prefer to not leave a comment on our blog you can email us at stanseljourney@gmail.com.