Monday, January 11, 2010

Working towards home

Another week has seemed to flow by and the girls continue to progress in many ways. It has been a hard past few days for Thomas because he has been sick and has not been able to see the girls since Wednesday. It just breaks his heart to not be able to be with his girls daily. He is constantly calling and checking on them. He is so funny he insists on going with me to the hospital, but he sits in the waiting room while I visit with them. He says he at least needs to be in the same building with them. He is going to be a great daddy, and I love him very much.

Rachel continues to grow. She has reached yet another milestone in her growth curve. Rachel has reached the 8 pound mark as of last night. We continue to pray that she will continually gain weight well because her weight gain plays the biggest role in helping her overcome her reflux, lung disease and her floppy airway. She has such a fighting spirit and we are grateful for that. Thomas and I will meet with Rachel's pulmonologist, gastroenterologist and her neonatologist on Wednesday to discuss whether or not she really needs to have a fundo and g-tube put in, or to let her continue to grow and see what happens. The main worry for Rachel is if we don't do a fundo/g-tube she may micro-aspirate which will make her lungs worse and/or cause her to get aspiration pneumonia. We have been agonizing over what to do for Rachel. We want only what is best for her. We have heard bad things about a fundo and we have also heard how they have made all the difference in the world for other babies. We only desire what is best for Rachel, and we will continue to pray and find out what is best for her. We know that Rachel does have reflux, but we do not know exactly how bad it is. We always want to do the less invasive procedures first before we jump into more invasive procedures like a fundo. We hope that the less invasive way of her getting a gtube with out the fundo is what will work, but we will do what is best for her.

Rachel posing for the camera

Haley like her sister continues to grow as well. She now weighs in at 7lbs 10oz. It is also so important for Haley to grow because she also has reflux and we are hoping she will grow out of it so that she doesn't have to have a gtube or a fundo in the future. Haley is still trying to master bottle feeding, some days are better than others for her in regards to bottle feeding. We understood that it would take her a little longer to grasp the art of bottle feeding because she was born so prematurely. Her neonatologist suspects that she will need a g-tube in the future due to the long amount of time it may take her to take all her formula by the bottle. Currently Haley is getting transitioned to bolus feeds vs continuous feeds. When she gets to a more normal feeding (by bolus) schedule she will be ready to come home. Thomas and I will have to learn infant CPR and get the car seat fitted in our car before she is discharged from the hospital. We will be learning CPR this Thursday evening at Texas Children's Hospital. It is getting closer and closer for Haley to be discharged. What a great day that will be in her life and in ours. We hope that she continues to thrive and do well so that we will be able to bring her home as planned thus far.

Haley with her fingers on that feeding tube ready to pull. She has pulled that tube out 2 times today.


  1. Good news!
    I am just wantting to tell you that no one ever talked about G-tube for my triplets... of course they were not that premature(35 weeks and 3 days) but I am thinking of the two hours it took to feed each one every three hours... day and night... I hardly slept!!
    We often laugh about what my mother did for our son, she made a huge hole and once he had tried eating for an hour she would give him his bottle with the "pipe line"
    I understand it is hard to know what is the best... I am glad I didn't have to answer such questions!
    Bon courage!

  2. I'm very happy with the news. The pictures are beautiful as usual and the girls are realy growing fast! I can tell by the pictures how much they have developed lately.
    I hope Thomas feels better soon. Always praying for you.
    Love, Claudia.

  3. Your girls are getting so big!!! You don't know me, but I follow your blog and my girls were also preemie and had many similar issues. I also struggled with the g-tube/fundo and it's not an easy decision, I know. We decided against the fundo and were heading towards just a g-tube (same thing, my baby had severe reflux) and refused to eat and was in 3 NICUs for four months!! Somehow, we ended up averting either surgery and she is doing great and just turned a year old this weekend!! (She is on Simply Thick and Prevacid). If you want more info, let me know as I've been there in your shoes (at TCH with the same doctors no less)!! Prayers continuing for your sweet girls!! Kristen

  4. They are beautiful! Bobby and Maya loved pulling their NG tubes out... We used to joke that, when it was time for them to come out, they should just let the kids pull them out for fun.

    I am so glad the kids are doing so well!

  5. They are so precious...I am praying for them and for you guys!

  6. Go with the g-tube. It was the best thing we did for my son. Once we put the g-tube in his development soared. It takes so much energy for preemies to suck and drink. It is not a good idea to make the hole bigger like a "pipeline" as preemies need to be able to co-ordinate their breathing, sucking and swallowing all at the same time. The baby can choke or aspirate if too much fluid is coming too quickly from a nipple with a large hole. Plus it must be uncomfortable for the babies to have N/G tubes in their noses all the time. I shed many, many tears about the g-tube but after many years I can see all the benefits it has. My son eats regular food but because of his cerebral palsy the intake of calories is not enough. His spaticity uses up many of the calories he gains by food, so the continuous night feed is a great supplement. It is the best thing I ever did for my son.

  7. Is your pulmonologist dr. robertson?

  8. Such beautiful daughters! You continue to be in our thoughts and prayers. Your sweet family is remarkable, so strong and full of faith.

  9. Happy to hear the girls are doing well. Haley will be home in no time and Rachel will soon follow her. They are precious girls and you and Thomas are such an inspiration. Thanks for sharing your story.

  10. How cute is that!! they are adorable.

    so glad they are doing so well and growing. i know that you and the doctors will make the right decisions for them!

    thanks again for sharing these beautiful babies with us.

    Erma, Midvale Utah

  11. Amanda, I follow your blog all the time. I have a little boy now, he is 4 months old. As a new mom I can only imagine how hard it must be seeing them in the hospital! I will be so glad with you once ya'll get them home. It's amazing the progress they have made. I'm also inspired by your faith, and pray for ya'll all the time too!

  12. :-) our son is a wonderfull 24 year old young man...
    The pipe-line wasn't that huge!! he never got to eat easily from a bottle... never managed to keep a pacifier in his mouth!
    But he never got a g-tube and everything went well...


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