Monday, January 18, 2010

The unpredictable

So some of you know how the NICU is and how a coming home date can be unpredictable. It looks like Haley's coming home date will most likely be Thursday now. The doctor wants to do a sleep study to make sure Haley is sleeping well on room air and doesn't need any supplemental oxygen. She doubts that Haley will need to go home on oxygen, but she is doing this 6 hour study just to make sure. As much as I want her home, I totally agree with the doctor doing this test. I also want to make sure she is completely ready to come home. She will come home so very soon so one more day will be ok. Let's hope Thursday will be the day - for sure.
I enjoyed spending some time holding Rachel today. Her surgery for a g-tube and fundo is planned for Wednesday. We hope and pray the surgery will go well and she will recover quickly. We are also hoping this surgery will be her last and that it will help her come home sooner than later.
We have a busy week ahead of us, but Haley coming home and Rachel having surgery will all work out.


  1. I can't wait until Haley comes home this week. You will love it so much and make sure anyone that comes and visit to use sanitizer. You have to worry about RSV/flu season. Thank you so much for being so diligent in blogging. I love to read about your family. I know when you come home with the girls, you will not have that much time to blog on a daily basis. But know that you and your family are much loved even though you don't know me. My daughter Samantha was born 3 months premature so I know about being a preemie mom. God Bless and I am so excited for you all.

    God Bless,
    Nicole from CA

  2. Be so very careful of RSV- it is a bad illness. My son was a 26 week premie and was diagnosed with RSV when he was 7 months old. He had to leave the local hospital and to the near by big city. Due to complications and loss of oxygen his Cerebral Palsy is worst than it should of been. I was not hard enough to make sure that everyone washed their hands before they held him. If people truly love your babies, they will wash their hands without being asked. Just be careful!!

  3. Getting those last steps done and getting out the door can be SO unpredictable! But at least you know for sure that you are getting down to the last few things. I hope Thursday is the day! It will be a big adventure, but it will be wonderful to have her at home--you might need a recording of all the monitors beeping so Haley will be able to sleep :).
    As far as helping people remember to wash their hand, my NICU gave out this cute poem to stick on your front door about not coming in if you are sick--I can get a copy of it if you are interested.
    I hope Rachel's surgery goes well tomorrow! What a big week for your girls!

  4. Pryaing that Thursday is the day! That Rachel's surgery goes very well, and that she too comes home soon! Love and prayers!!!!

  5. Thanks for making the time to update your blog. I love the news and I agree that one more day is no big deal. It is important that Haley goes home when she is ready for it!

    Little Rachel is a champ, and her surgery today will be just fine. I will keep praying for you and the girls.

    Love, Claudia

  6. Amanda, your posts are always so beautiful. I can feel how sincere you are and how much you love your two adorable girls. I'm keeping my fingers crossed that Haley does well with her sleep study. While I know the disappointment that you feel that the day has been pushed back....the peace of mind that the sleep study will give you is worth it! I'm keeping Rachel in my prayers as well! She's a fighter!

    I too agree with all the previous posts about RSV and being strict about who you let into your house the first few months at home. My two surviving triplet girls were born at 28 weeks. Every entrance to our house has a huge bottle of purell next to the door. Unfortunately, your daughters health is your new #1 priority. People will criticize you for keeping them sheltered but ignore them!! Your beautiful girls health is more important! Sorry to go off on my soapbox, but I've been through it. Big Hugs to you! I'm praying so hard for your family to be reunited at HOME soon!!

  7. Wish I was close enough to use Purell so I could hold one, or both.

    Maybe some day.

    Congratulations! It has been a long haul and you have handled it well. I am sure it is the love you and Thomas have for each other that will see you through the rest of the 50 years until you can stop worrying about them.

    Virginia and Frank

  8. I'm sure they'll get the RSV vaccinations, so hopefully that will help. My full-term son had RSV and luckily was fine, but it was scary for a bit. I sure hope that Rachel is home soon.

  9. Amanda~
    I am sure you are excited to have her home. I totally agree- having a NICU preemie- with you on wanting to be ABSOLUTELY SURE that all is well. The breathing/sleeping was my biggest worry, so I am happy to hear the test will be done as well. I hope Miss Rachel does well with the surgery and will not need the help of the implements after long. I know that must be hard for you, but she does not need pneumonia from aspirations. Big hugs, my thoughts are with you (as well as my prayers) every day.

  10. NICUs are unpredictable. My Rachel got delayed quite a few times (in fact her brother got to catch up to her and they went home together) but the minute they were home none of it mattered and I was glad we did it right. Best wishes for your Rachel's surgery!!!! You all will be in our prayers!

  11. Bummer...I know how hard that is to have to wait. My trio got bumped a couple of times as well but finally made it home and we haven't looked back since!

    Praying that Thursday is the day!

  12. It is not much longer until Haley is home. Rachel will get along great with her surgery and will be home before you know it. Thank you for sharing your story.

  13. Hey Lone Star - do you ever really quit worrying about your kids -- my 51 yr old daughter still keeps me in the worry mode, as do her 49 and 46 year old brothers and her 42 yr. old sis... being a mom is just wonderful - it keeps on giving and giving! and i love it!!

    it will be so wonderful when this sweet family is all together under their very own roof - we all await it anxiously!

    Thanks Thomas and Amanda, you are such a blessing in my life! love to the girls...

  14. Rachel will be in my prayers. I hope Haley does get to come home on Thursday. What a beautiful thing to have her home. We all look forward to the day Rachel gets to come home too.

    I have said it before, but I just love how plump they are. So precious!

  15. Just a quick note to let you know that I will be praying for Rachel today while she has her surgery. Also, so excited that Haley will be going home on Thursday. Yahoo. :) Again, thanks so much for sharing your story with us. God Bless, sherri

  16. We will keep Rachel in our prayers today, that all will go well and it will allow her to come home with her mommy, daddy and sister very soon!!

    Yahoo!! Haley will be home on Thursday!! Now the fun will begin and the blessings of having her home with all of you!!

  17. What an exciting thought - home for Valentine's Day! It will be a little more complicated visiting Rachel, but so worth it. Our prayers continue for all of you and we pray Rachel's surgery went well. Love from Salt Lake City.


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